Aging and Addicted
When you picture drug abuse, Canadian seniors may not come to mind. But the over-prescription of painkillers has made them another face of the opioid epidemic.
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, March 2017
When Bert Mitchell remembers his motor-vehicle accident in February 2003, the 67-year-old can still see the two tractor-trailers jackknifed ahead of him on Highway 401, just north of Cobourg, Ont., where he lives. As Mitchell careened toward the pileup, there was a collision in his own mind — a split second of dissonance — between what he would attempt and what he couldn’t possibly avoid. He then stomped on the brake pedal as his Toyota Corolla was rear-ended by another tractor-trailer and driven into and under the stationary trucks just ahead. It took emergency responders several hours to free him from the wreckage — an extrication that he recalls only as scattered images witnessed amid brief moments of consciousness.
When Mitchell finally awoke from an induced coma two weeks later, he found himself in pain so excruciating that he thought he would pass out. The nurses were palpating his chest, clearing fluids from his collapsed lungs. “It’s like the old adage,” he says, still bemused. “I heard someone screaming and then realized it was me.” He was later told that he also had a concussion, 12 broken ribs, two spinal breaks and other internal injuries, as well as a compound fracture in his left arm.
Several weeks on a morphine drip at Toronto’s Sunnybrook Hospital led to several more weeks at Northumberland Hills Hospital in Cobourg. After finally being discharged, he remained bedridden for the better part of a year, completely dependent on a combination of the opioid pain-relief drugs OxyContin and Oxycocet.
“Taking these painkillers was very pleasant,” Mitchell admits. “The pain would return slowly, but I would take an OxyContin, and then five minutes later, everything was great again. It was a comforting feeling that would wash over my body with every heartbeat. I felt confident, secure — and happy.” OxyContin also made Mitchell drowsy. Although his midday snoozes were satisfying, he would fall asleep anywhere and at any time — even while behind the wheel of his car. After several near collisions, his wife, Sue, took over the bulk of their driving.
While recovering at home one day, Mitchell, who was forced to retire as a training technician because of his injuries, was shocked to read about the addictive nature of the drug that he had been taking for more than a year. He decided to stop cold turkey. “This was a mistake,” he says. “In just a few hours, I felt that something was very wrong.” As the drug’s effects started to wear off, the severe, intractable pain came back in waves until it was all-engulfing. He began to shake and panic. All he knew was that he had to have more OxyContin. It was “impossible to resist.”
While the prevailing picture of an opioid addict may be a street-involved person living in a place like Vancouver’s Downtown Eastside, a prescription from a family doctor can mark the beginning of a downward spiral into addiction. Mitchell is one of the growing number of North Americans — many elderly — who have overused pain medication in recent years, sometimes with tragic consequences. Opioids like OxyContin and fentanyl have long been prescribed for chronic conditions such as headaches and arthritis, and are highly recommended following surgery or at the end of life. But as opioid-related overdoses and deaths continue to increase, and as our aging population experiences aches and pains with ruthless regularity, physicians are being asked to pause before prescribing opioids to patients.
The seasons passed slowly, and Mitchell’s blissful haze wore thin. His accident-related pain now had merciful limits, but he often felt frustrated, even despairing. Determined to kick the addiction, he steeled himself for what was to come. “After four years, I finally went to my doctor and went through a program of gradual reduction of OxyContin and the eventual switch to fentanyl patches,” he says. “But after the first several months, I started becoming dependent on [fentanyl] and experienced insomnia, involuntary twitching and depression at the thought that I had lost control of my ability to function. . . . I was also tired of feeling a sense of panic whenever there was a chance that I couldn’t get my prescription refilled or if I thought that I had forgotten [the patches] while away from home.”
So after seven more years of gnawing uncertainty, Mitchell — who had no history of addiction prior to using OxyContin and fentanyl — decided to go off the opioids once and for all, without consulting his doctor. Only this time around, he inched forward, reducing his dosage by simply cutting the fentanyl patches in half, then in thirds and, finally, in quarters. After about two months, Mitchell says that he discontinued them altogether and felt completely, unmistakably “free.”
Dr. Hillel Finestone, the director of stroke rehabilitation research at Ottawa’s Élisabeth Bruyère Hospital and an associate professor of physical medicine and rehabilitation at the University of Ottawa, says that “people are finally realizing that there’s a high level of opioid prescriptions, with some physicians not being careful enough evaluating the drugs’ addictive potential.”
“What’s happened is that people are being prescribed opioids for more chronic, more persisting painful conditions, such as a nagging lower back, neck and leg after an automobile accident or a fall down the stairs,” he says. “And that sets up this cycle in which [a patient] always needs more.”
Finestone, who is also a fellow of the American Academy of Physical Medicine and Rehabilitation and author of the 2009 book The Pain Detective: Every Ache Tells a Story, points out that most opioid users aren’t recreational consumers “sitting in the corner of their living rooms, in the darkened night. . . . These are people dealing with their pain.”
Roughly one in five Canadians — and as many as three in five seniors — live with some kind of irrevocable suffering. According to the Canadian Centre on Substance Abuse (CCSA), nearly 15 percent of the general population and roughly 16 percent of seniors use pain relievers such as morphine, oxycodone (best known by the brand name OxyContin) and fentanyl (typically administered through an adhesive patch). In fact, Canada has become the world’s second-largest per capita consumer of opioids behind the United States. In 2015, the number of Canadian opioid prescriptions was 19 million, according to 2015 figures provided to the Globe and Mail by IMS Brogan, which monitors the health-care industry.
But opioids can also bring about drowsiness, perspiration, constipation, nausea, vomiting and a loss of appetite, the CCSA says. And higher doses can cause sleep apnea, mood changes and an overwhelming feeling of euphoria, as well as a significant decrease in one’s breathing rate, which can lead to unconsciousness and death. People who are physically dependent on opioids — addiction can happen in as little as a week — may also experience withdrawal symptoms in mere hours if they simply run out of medication or decide to quit abruptly. Think of it as a terrible flu. Insomnia and lower-back pain may kick in. Chills can race through the body. For a couple of days straight, there can be major diarrhea, vomiting or dry-heaving, and even more muscle aches. In other words, opioids may not relieve underlying pain as much as they numb the suffering associated with withdrawal.
As a result, opioid users may take a daily dose higher than what’s recommended by their doctor; ingest them together with alcohol or other sedatives; and beg or steal opioids from friends or relatives. Some addicts obtain prescriptions from multiple physicians without disclosing their other prescriptions — a scheme called “double doctoring” — or resort to using street- or Internet-purchased drugs, which aren’t regulated and are therefore far more dangerous.
The effect of opioids on Canada’s health-care system is no less adverse. According to 2016 figures from the Canadian Institute for Health Information (CIHI) and the CCSA, opioid poisoning increased by more than 40 percent between 2007 and 2015. Across the country, hospitals recorded nearly 4,800 admissions for opioid overdoses in 2014, compared to nearly 3,400 in 2007. The CIHI and the CCSA reported that those patients stayed in hospital for an average of eight days, which is longer than patients recovering from pneumonia, heart attacks or hip replacements.
Last April, British Columbia even declared a public health emergency because of opioid-related deaths. By year’s end, the province’s coroners service announced, 914 people had died from overdosing on an illicit drug — usually fentanyl — a nearly 80 percent increase from 2015.
Across the provincial border in Alberta, 338 died due to opioid-related overdoses between January and September of last year. In Ontario, opioid overdoses are now the third leading cause of accidental death, killing two people in the province every day, according to data provided to CBC News by the Office of the Chief Coroner in October.
In 2015, one year after he finally got off fentanyl, Bert Mitchell’s appendix ruptured, forcing him to undergo emergency surgery. Once again, he spent a number of days in the hospital and was placed on a morphine pump for his pain management. Upon discharge, Mitchell — already stupefied by painkillers — was advised by his surgeon to take opioids. He objected strenuously, though, informing his physician that “under no circumstances” would he ever take something like OxyContin again.
“I was aware that I was addicted to OxyContin once and that I would be susceptible,” he says. “[My surgeon] said that he understood my trepidation and indicated that he would prescribe Percocet instead. But when I went to the pharmacy to fill the prescription, my pharmacist was visibly shocked. He knew of my bout with OxyContin and fentanyl because he filled my prescriptions during my recovery. He told me that Percocet was the same thing as OxyContin.”
Percocet contains far less oxycodone and is not as long lasting. Still, Mitchell’s pharmacist felt that the prescription was inappropriate for him and called Mitchell’s surgeon to express his concern.
“Did my doctor not even realize?” Mitchell asks. “This would seem to indicate that some doctors who are involved with pain management aren’t aware of what — and to whom — they are prescribing.”
Derived from poppies, opium has long been the elixir for pain. The ancient Sumerians are believed to have been the first to discover the flower’s euphoric properties around 3,400 BC; they called it “the joy plant.” In the early 1800s, German pharmacist apprentice Friedrich Sertürner separated the sleep-inducing compound from the poppy plant and named it morphine, after the Greek god of dreams.
In 1874, British chemist Alder Wright synthesized the drug that would come to be known as heroin. And by the turn of the 20th century, physicians didn’t prescribe much other than opiates for pain.
“Thus, addiction exploded — to a drug that people believed was safe because doctors said so,” Sam Quinones writes in his 2015 book Dreamland: The True Tale of America’s Opiate Epidemic. “By 1996 American physicians were tenderized to accepting opiates for chronic pain. Undertreated pain was an epidemic and physicians now had the duty, the calling, to relieve it using the new tools and drugs the pharmaceutical companies were inventing.” During that same period, “pain crusaders” even heralded Purdue Pharma’s new synthetic drug, OxyContin, as “the Holy Grail,” Quinones points out.
This “happy façade covered a disturbing reality” in the United States, Quinones writes: addiction has devastated the Rust and Bible belts, as well as other parts of the country. More than 15,000 Americans died of prescription opioid overdoses in 2015, according to the Centers for Disease Control and Prevention. That’s more than the total number of deaths caused by heroin or cocaine overdoses.
But there is a misconception surrounding who is most at risk of abusing opioids, according to Andrew Kolodny, the executive director of Physicians for Responsible Opioid Prescribing in the United States. In August 2015, Kolodny told Al Jazeera America that the rate of opioid abuse may be even higher among older Americans who receive prescriptions. “When you look at the groups that have had the greatest increase in problems associated with prescription opioids — for example, visits to hospital emergency rooms because of opioid misuse — it’s Americans over 65,” he said.
CDC data published in 2015 revealed that over 3.6 million Americans aged 60 and older used prescription opioids in a 30-day period. Between 2014 and 2015, the rate of Americans over the age of 65 who died from synthetic opioid overdoses increased by 25 percent.
Still, their opioid addiction remains a hidden epidemic, Kolodny told Al Jazeera. That’s because family members, friends and caretakers frequently miss the telltale signs of addiction. When an older person overdoses on prescription opioids before going to sleep, the cause of death is far too often listed as “natural.”
Pain experts in both Canada and the United States say that there’s still a place for opioids in health care, such as after a major surgery. And the risk of long-term opioid use in surgical patients is extremely low, according to Dr. Hance Clarke, the medical director of Toronto General Hospital’s pain research unit. Clarke led a study, published in the journal JAMA Surgery last August, about the use of post-surgery painkillers over one year. The 39,140 participants were 66 and older, had not taken opioids in at least a year and underwent major surgery between 2003 and 2010. The study suggested that opioid abuse occurred in less than half of one percent of the 20,744 seniors who received opioids after their surgery. The rest only briefly used drugs like OxyContin or Percocet.
“If you’re an elderly patient and you come into the hospital [for surgery] and have no chronic pain issue, the fact that you’re going to be on opioids short-term is probably not going to be an issue for you,” says Clarke.
While he says that there is “excellent evidence” that opioids can effectively treat acute pain after surgery, he admits that when it comes to a complex pain patient, his “prescription pad is only going to do so much.”
Finestone agrees. Opioids should never be the “mainstream treatment of pain,” he says. However, often “family physicians have few other treatment options for patients.”
He suggests non-pharmacological therapies, including physiotherapy, kinesiology and psychological counselling, as well as holistic practices like mindfulness. But these may not be covered by provincial health insurance and assistance plans. So the major impediment to receiving this “total basket of care,” according to Finestone, is “the financial hardship that’s imposed on individuals if they pay for all of these services, which can cost tens of thousands of dollars over time.”
He says that policy-makers and health-care practitioners must also come together to turn the tide of opioid over-prescription while keeping pain levels under control. This means a team approach similar to that established for cancer, stroke and heart patients, who are treated not only by physicians and nurses, but also by social workers, dietitians and physiotherapists. There’s virtue in this multidisciplinary care, he says. Both money and lives are saved.
But Finestone worries about what will happen to patients if they’re forced to suddenly withdraw from their painkillers. “What do you do when your family doctor finally wants to stop prescribing opioids, but you still need them because of the powerful physiological and psychological dependency?” he asks. “You can’t just be told, ‘Tough luck.’” In the absence of affordable opioid-substitution treatment and cognitive behavioural therapy, Finestone says pain sufferers may go straight from the pharmacy to the black market for their medication, instead of weaning off it altogether.
In his 2014 book, Being Mortal: Medicine and What Matters in the End, American surgeon and public health researcher Atul Gawande describes the human struggle “to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone.”
He writes, “If to be human is to be limited, then the role of caring professions and institutions — from surgeons to nursing homes — ought to be aiding people in their struggle with those limits. Sometimes, we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good that we do can be breathtaking.”
At 67, Bert Mitchell no longer embodies the downward spiral of opioids. Instead, he gives physical shape to a clean-living philosophy. In hindsight, the reason he first used the drugs oscillated somewhere between the avoidance of pain and the permanence of pleasure. Mitchell sympathizes with seniors who want to use opioids, especially if they’re in a lot of pain. He understands how they could “accept an inevitable addiction over a miserable existence.” As for people who are closer to retirement age and younger, he says that if they require opioids, every effort should be taken to control their dose and duration — “two or three days maximum.”
Today, Mitchell and his wife spend most of their time between their sun-drenched condo in Bonita Springs, Fla., and their three-bedroom bungalow in Cobourg. He plays 18 holes of golf whenever he feels well enough and remains active as a vice-president in the Retired Workers’ Chapter of the province’s Power Workers’ Union. The couple have always travelled, but in recent years they have taken trips to Mexico, the Caribbean, Hawaii and the French Polynesian islands.
Of course, Mitchell’s friends and family still ask him, “How are you feeling?” They know he still suffers from post-accident pain: the arthritic soreness and the scar tissue-related stiffness. But he says that he’d rather be this way than addicted to “this [opioid] crap.” In fact, he barely uses any medications, other than the occasional Advil or Naproxen and drugs for blood pressure and cholesterol. He opts instead for massages and “regular dips” in a hot tub.
“Yes, I’m feeling much better today,” Mitchell says, rather assuredly. “I finally have my life back.”
Sidebar: How different regions are tackling the opioid crisis
By KEVIN SPURGAITIS
As jurisdictions across Canada and the United States struggle to curb the use of opioids, physicians and policy-makers are offering both administrative and legislative solutions. It’s too soon to know which of their approaches will carry the day.
In March 2016, the U.S. Centers for Disease Control and Prevention (CDC) released new guidelines for prescribing opioids, recommending that physicians prescribe as low a dosage as possible — and for shorter periods. In August, U.S. Surgeon General Vivek Murthy sent a letter to every doctor in the United States acknowledging that over-prescription was a root cause of the country’s opioid problem and asking for their help in solving it. The U.S. Food and Drug Administration announced that it will require labels warning about the risks of prescribing opioids.
Addressing the huge gaps in Canada’s ability to monitor the number of people who abuse and die from opioids each year, federal Health Minister Jane Philpott and Ontario Health Minister Eric Hoskins announced in November that the Canadian Association of Poison Control Centres plans to set up a central database that will keep track of overdoses leading to either hospitalization or death. A more complete portrait of opioid overdoses and deaths — whether deliberate or accidental — will help policy-makers address the problem.
Canada’s maximum dosage recommendation, which hasn’t been amended since 2010, is four times higher than the CDC’s in the United States. But last spring, as the number of opioid-related deaths in British Columbia rocketed upward, the College of Physicians and Surgeons of British Columbia endorsed the CDC’s guidelines and then revised its own prescribing standards. The B.C. college required that the province’s physicians check their patients’ prescription history before providing any more opioids to them. In February of this year, the province announced that an updated set of guidelines will come into effect in June.
To combat what it calls the “growing problem of opioid addiction in Ontario,” the province’s Ministry of Health and Long-Term Care announced last July that it would no longer pay for long-acting, higher-strength opioids through the Ontario Drug Benefit program. As of January, those who receive the ODB — such as seniors and people with disabilities — have to pay for higher-dose prescriptions themselves or ask their doctors for lower-dose prescriptions.
Meanwhile, more than 80 Ontario doctors are under investigation after the Ministry of Health’s narcotics monitoring system revealed that they had prescribed exceptionally high amounts of opioids, like oxycodone and fentanyl. “The ministry detected some patterns which I would describe as unusual,” Health Minister Eric Hoskins told the CBC in November. “We’re talking about daily doses of opioids that are equivalent to roughly 150 Tylenol 3s being consumed in a single day. That’s a pretty high level of prescribing.”
Through the Cracks
Community living offers hope to people with developmental disabilities, but troubling gaps remain. Just ask Chris Stafford.
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, February 2014
When the autumn morning sky brightens over Burlington, Ont., the sight of the lakeshore dominates the leafy landscape. In nearby cul-de-sacs, post-war bungalows and row houses with curtained windows and manicured lawns intermingle. Inconspicuous among them is an older-style residence still painted pale beige with waist-high fencing all around. At the front, a shiny black plaque boasts of recent Rotary Club renovations, while a rubber doormat simply welcomes “Dear Friends.”
Inside, there is little in the way of decoration, but small touches express the lingering idea of home: knick-knacks and candy dishes have been placed on tables; knit blankets have been draped over a sofa and set of recliners.
As you enter one of the house’s four bedrooms, it’s possible to surmise the tastes and interests of its occupant. A fresh coat of electric blue paint brightens the walls, which are also covered with posters, including one from the TV sitcom The Big Bang Theory. Neatly piled by the bedside are a faux-suede Stetson, a plastic samurai sword and copies of Japanese manga fiction — graphic novels that are reassuringly linear to Chris Stafford.
“Honestly, when it comes to manga, I just love it,” says the 21-year-old as his mother, Andrea — who is visiting Chris for the day — intently watches from the corner of the bedroom.
Chris Stafford has a high-functioning form of autism. Since last fall, he has been living at Stratton House, a community-based home for people with developmental disabilities, along with three others and their aides.
If societies are measured by the way they treat their most vulnerable members, then it’s worth examining how we regard people with developmental disabilities. In Canada, more than 680,000 children, youth and adults are living with autism, cerebral palsy or Down syndrome, according to the Canadian Association for Community Living (CACL). At one time, people with developmental disabilities were segregated from society and warehoused in government-run institutions. But in recent decades, a philosophy of inclusion and equality has emerged, forcing most of the old institutions to close. In their place is community living, the idea that people with disabilities are best served by living with their own families, independently or in group homes.
For advocates of community living, the change in provincial policies was long overdue. But there’s a huge gap between the rhetoric and the reality. In Ontario alone, more than 12,000 people with developmental disabilities languish in a queue for group housing — some for as many as 15 years. And another 3,700 families await direct funding for in-home care, according to government statistics. That’s left many parents providing care themselves, helping their children to perform daily tasks, such as bathing, dressing and eating — or paying health-care and daytime aides an estimated $1 million over a lifetime. And for those like Andrea Stafford, who have children with autism, the expected price tag for physio and speech therapies, as well as what’s called applied behavioural analysis, is $100,000 per year.
When you first meet him, Chris Stafford comes across as an introvert — maybe slightly eccentric. He sometimes avoids eye contact or deviates from the subject at hand and resolutely attaches to another. He can recite verbatim conversations that happened a year ago.
Dressed in a denim jacket and jeans, an untucked T-shirt and sneakers, Stafford projects a youthful veneer. But his slightly furrowed eyes and mouth hint at an agonizing past. His troubles all started when he lashed out against his high school aggressors: those who jeered and forced him to crawl on the floor for loose pennies, capturing one demeaning episode on video and posting it to YouTube. It was “disgustingly cruel,” his mother says. Chris Stafford fell to pieces. His expulsions from school for fighting led to more fights at home — and a series of attempted suicides, for which he was hospitalized.
His mother, who is a single parent of three, working as a college program co-ordinator and studying for her doctorate, could not provide around-the-clock supervision of her son — especially not after he cracked her cheekbone and fractured her left foot. And there were no spaces inside group and respite homes, which offer families a break from primary caregiving, both permanent and temporary. So, after he spent three months within the social welfare system, including at a home for troubled teens, Halton Region Support Services suggested another alternative for the then 17-year-old: a shared room in a homeless shelter in downtown Hamilton. Shelter life was more than both Staffords could handle, though. Chris often missed curfews. Eventually, he went missing for an entire day, when he says he had to fend off a knife-wielding drifter.
Andrea Stafford, who visited her son almost daily, still tries to imagine what that period was like for Chris. The details of his own account shift with every telling. “I honestly never thought in my wildest dreams that they would place a teenaged autistic person on the streets of Hamilton,” she says. Around that same period, she ended up in the hospital on life support, after her immune and respiratory systems failed due to stress and her weight plummeted to 85 pounds. “Actually, I thought that it was more of a nightmare, and I just kept wanting to wake up.”
Eight months after Chris was kicked out of high school and the family’s ordeal began, he was finally offered a spot in a Burlington group home for people with severe developmental disabilities. It was the first of many.
Back in the late 1700s and 1800s, there were no services for people with developmental disabilities in Upper and Lower Canada. Those who weren’t provided for by family members often ended up incarcerated, living in deplorable conditions. In the 1830s, attitudes began to shift marginally, and concerned citizens lobbied the government to establish an alternative to jails: asylums. The first of these was built in Orillia, Ont., in 1876 — the forerunner to 15 other facilities in the province, giving residency to 50,000 people over time. And with industrialization came an increase in demand; more people migrated for work and turned their loved ones over to the state. Additional institutions were erected to meet the need. Well into the 20th century, these places were the only option available to people whose families couldn’t care for them.
Institutions fell out of favour by the mid-1970s, as ideas about integrating people into mainstream society began to flourish. In 1982, Canada’s Charter of Rights and Freedoms gave people with developmental disabilities the same status as every other Canadian. Provinces and territories soon followed suit with their own human rights codes. And in 2010, Canada ratified the United Nations Convention on the Rights of Persons with Disabilities.
Today, only four large-scale, provincially funded institutions — housing over 750 people — remain in Canada: the St. Amant Centre in Winnipeg and the Manitoba Developmental Centre, as well as Saskatchewan’s Valley View Centre, which is scheduled to close within the next three years, and Alberta’s Michener Centre, also facing closure.
Ontario’s last three institutions shut their doors in 2009. The Huronia Regional Centre in Orillia was one of them. When it opened in 1876, it was called the Orillia Asylum for Idiots. At its height in 1968, the sprawling red-brick facility on the shores of Lake Simcoe housed more than 2,600 people. Last September, the Ontario government reached a $35-million settlement with former residents of the facility for the emotional, physical and psychological abuse they experienced there. Ontario Premier Kathleen Wynne formally apologized to them in December, telling the press that the province “broke faith” with some of its most vulnerable residents within “the very system that was meant to provide them care.”
Even in Huronia’s cemetery, where 2,000 bodies are buried, many of the tombstones bear only numbers — no names. Some grave markers were at one point repurposed as patio stones leading to a nearby group home.
By midday, the late fall sky brightens over Burlington. Chris Stafford and his mother visit a music store, which stands out in a cluster of low-rise buildings, in the city’s industrial section. Inside, immaculate guitars, pianos and drum sets are proudly displayed. For Stafford, it might as well be a holy place. With his eyes widened and arms extended stiffly, he gives a look of utter reverence. Drawing the occasional stare from patrons, he grabs an acoustic guitar and excitedly strums popular songs like Oasis’s Wonderwall and Tom Petty and the Heartbreaker’s Free Fallin’. “Hey, do you know that one? Do you know that one?” he queries after each.
“Well, basically, I’ve been playing guitar since I was 14. I got my first learner’s guitar at 18,” Stafford says. “I just really like music in general, but mostly stuff to do with country. . . . I love Taylor Swift’s Safe & Sound, especially. So whenever I’m really upset, I play music or just listen to it. It automatically calms me down, and I really like that —”
“Hey, Chris, you’re about to go off on one again, buddy,” his mother quips with a throaty laugh, cutting short his enthusiastic rambling.
With short-cropped blond hair and a tawny complexion, Andrea Stafford is a ready mix of tenderness and assurance. For four years, she taught her son the intricacies of sarcasm — partly so he could notice whenever people made fun of him. Monty Python is one of their favourite comedy acts. In fact, whenever things become intense between the two, they’ll recite lines from the movie Life of Brian — affectionately and in mock English brogues.
“Yeah, whenever I’m accused of something I didn’t do or something that I don’t want to admit, I’m always telling my mom — as Monty Python would say — ‘Oh, just piss off,’” Chris says.
As her son continues to marvel at the guitars, Andrea Stafford quietly confides that she considers her family “fortunate” because Chris was finally welcomed into a group-home setting.
The Canadian Association of Community Living has long advocated for including people with developmental disabilities in society. Founded in 1958, the CACL promotes their participation as “full citizens” through deinstitutionalization, education and individualized supports. In essence, community living refers to a residential setting: family, group, respite or self-owned homes, the organization says. It’s meant to foster new abilities and a degree of dignity.
“We’re making significant progress on [deinstitutional-ization],” says Tyler Hnatuk, the CACL’s national co-ordinator of policy and programs. “It’s been families’ values, vision, passion and commitment that have inspired this movement for more than 60 years now. That’s enabled even more families to imagine and pursue a good life for their members with a development disability.”
But Hnatuk is the first to admit that what the CACL helped to create is far from perfect. “The closure of institutions has been a process that’s been very carefully pursued in order to ensure that investments are moved to communities,” he says. “But it’s been brought to light that in many areas, there is a crisis in the fairly basic support people with developmental disabilities need to enjoy a better life in those same communities. . . . And that’s something inherently unjust.”
In addition to the long waiting lists for group-home spaces and in-home supports, people with developmental disabilities are four times more likely to be excluded from community activities than persons with other disabilities, the CACL says. They also experience some of the highest rates of violence and abuse, women especially. Most are unemployed. And only about a third of people report that they make decisions about their everyday activities — whether it be conducting a financial transaction, signing a lease or accessing medical treatment — compared to more than two-thirds of people with other disabilities, according to the CACL.
Of course, attitudes toward people with developmental disabilities are slowly changing. But every so often, extreme cases of hatred and abuse surface in the news: a venomous note left for the mother of a 13-year-old boy with autism in Newcastle, Ont., recommending euthanization; a 22-year-old with a developmental disability held captive in a Hamilton apartment for three weeks — robbed, beaten, burned and abused.
It wasn’t supposed to be this way. Canada’s Registered Disability Savings Plan, which began in late 2008, provides incentives and grants to people with disabilities, promising a better quality of life. More recently, provinces have begun to offer assurances, too, if only tepid ones. In September 2012, Ontario’s then Minister of Community and Social Services John Milloy told the Globe and Mail, “I’m aware there is more demand than available resources out there. . . . I have a tremendous sympathy; I understand the challenges they are facing.”
Andrea Stafford has faced many challenges in her search for a group home for Chris. So far, he’s lived in three. For one reason or another — usually behavioural — Chris wasn’t the “right fit.” These days, she doesn’t see her son as often as she would like; his newest group home is about a 90-minute drive from her home in Georgetown, Ont. “This was the best that they could come up with because of the shortage of residences,” she acknowledges.
Dr. Wendy Roberts, the co-director of the Autism Research Unit at Toronto’s Hospital for Sick Children and the vice-chair of Ontario’s new blue-ribbon advisory panel on autism services, says she sympathizes with parents like Andrea Stafford. “These families didn’t ask to live in this world of autism and developmental disability. But they’re in it, and they now have no choice.”
To those on the outside, Roberts advises, “Just get to know a family who has a person with a developmental disability and closely look at what it’s like for that person and their family. It’ll really change your awareness of the systemic biases against them that exist.”
Twilight comes, giving the sky a bluish-grey translucence. The canopy above Burlington is still bright enough to turn treetops and chimneys into silhouettes, and sufficiently dim to make the streetlights beam. In the growing gloom, Chris and Andrea Stafford return to Stratton House after a day of shopping. Exiting the car, Chris walks briskly up the driveway toward the front porch, his mother right behind him. When she throws her arms around him, he offers no resistance — but no farewell, either. Instead, he scrunches his eyes ever so slightly again, leaving his face with a couple of expressions: stoicism and then a kind of mild amusement.
Chris still suffers bouts of depression, according to his mother. And he still holds some resentment for being “dumped” — as he describes it — on the streets of Hamilton not long ago. This acrimony has loomed over their visits. But it’s also had merciful limits; Chris has conceded that his mother had few options. So the two are now making headway, together, at least in small increments.
“There by the grace of God, my son isn’t in a jail somewhere even farther from home,” Andrea Stafford says. In fact, community living — particularly in group homes — has saved Chris, she insists. “But after travelling this road, I still can’t believe that, by and large, we have so little regard for people whose brains work a little differently. . . . Even though they’ve deinstitutionalized them, nothing has dramatically changed other than the fact that they’ve opened up the doors [of institutions] and said, ‘Here, now you take them.’”
For Andrea Stafford, there are many points of culpability. But she is adamant about what needs to happen next: as this next wave of children identified with autism and other developmental disabilities reaches adulthood, there should be a wider range of disability-related supports and far more group and respite homes than there are now.
“You know, my hopes and dreams for Christopher are no different than any other parent. First of all, I want things to work out for a while in his newest group home. . . . I want my child to be happy. I want him to live a little more independently and in a manner that gives him dignity and pride.”
Andrea then looks over at her son, catching his inquisitive glance. “Hey, isn’t that right now, buddy?” she queries. For a brief moment, Chris retreats into a mental closet. A look of perplexity pops onto his face. “Well, I guess that’s kind of true, Mom,” he says, before responding with something less resembling conjecture. “Okay, yeah, yeah, it’s definitely true.”
Beyond the Music
Immersive, multi-day festivals have become a modern rite of passage
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, October 2016
It’s midday by the time tens of thousands of festival-goers stream onto Montreal’s Île Sainte-Hélène. Some wear straw cowboy hats or floral headbands, tie-dyed shirts or paisley-patterned dresses as they drift over sunburned patches of grass. Others already dot the hillside, sprawled out or cross-legged. The banner mantra, “Catching Feelings,” intertwined with greenery, is raised against the unblemished sky. This, as cigarette, cannabis and fruit-flavoured smoke wafts through the summer air.
The live music at the annual three-day Osheaga Music and Arts Festival is never-ending on the aptly named stages: “River,” “Mountain,” “Green,” “Trees,” “Valley” and “Zone Picnik Electronik.” If it’s not reverberating, it’s pulsating. And if it’s not twangy, it’s utterly electronic. The performers have names like The Lumineers, The Arcs, Half Moon Run and Future. Halfway through his set, singer-songwriter Kurt Vile proclaims, perhaps facetiously but not mockingly, “This one is for Jesus.”
Outdoor music festivals have long been popular in Europe and South America, drawing crowds of more than 200,000 to the United Kingdom’s Glastonbury and Brazil’s Rock in Rio, among others. But in the past decade, these big multi-day productions have expanded rapidly in North America, too. Establishing itself as the biggest event of its kind in Canada, Osheaga — which just marked its 11th anniversary — now attracts 120 bands and more than 135,000 people.
One in five millennials attend at least one festival each year, according to a 2015 Eventbrite study. Their popularity may have something to do with the connections made and the momentary escapism. And with fewer North Americans identifying themselves as religious or attending regular services than members of any other living generation, outdoor music festivals seem to be filling a spiritual void, too. Whether they’re religiously affiliated or not, revellers say that they’re a part of something truly beyond themselves.
Attending Osheaga has become almost a rite of passage for millennials like Justin Zoras, who attended his first Osheaga in 2013. The 28-year-old admits that attending music festivals is an affordable way to witness countless artists in just a few days. But in the midst of this “exotic world,” Zoras also feels “surrounded by so much positivity,” he finds himself forgetting about his issues or problems.”
Perhaps, that’s because there’s “something almost tribal about it all,” Zoras adds, pointing out the totems and theme costumes, as well as the shirts and hats emblazoned with the word, “Osheaga,” worn by attendees.
Nancy Cholette, 31, has attended Osheaga four times. Says Cholette: “Even though I’m a late millennial, myself, I find our generation is connecting to (music festivals) much more than the previous ones. . . . And they unite people no matter what your social situation is.”
She continues: “It’s also the chillness of it all. You are on a hill, sitting on a patch of grass, drinking a beer. There’s no stress at all. It’s just music and the sun. It’s a change from the festivals I attended as a teen.”
In a 2010 study looking into the influence of music festival attendance on social well-being, researchers Jan Packer and Julie Ballantyne of the University of Queensland in Australia discovered that people “experience senses of engagement and connection” at multi-day events. Simply put, outdoor music festivals allow for close proximity and communal bonding. Not only is there interaction with other attendees, but also with artists themselves. Packer and Ballantyne note that young people attend festivals for so-called separation experiences — moments of “reflection on daily activities, experiences and oneself by feeling disconnected from everyday life.”
Of course, all of these sprawling multi-day festivals originate with the Woodstock Music & Art Fair, the almost mythological gathering held on a 240-hectare dairy farm in Bethel, N.Y., in August 1969. Woodstock attracted 32 performers, including the Grateful Dead, Janis Joplin and Jimi Hendrix — and 400,000 attendees. Renowned for the abundance of pot smoking, free love and an electrifying sense of social cohesion, Woodstock was called the most peaceful human-made event in history by Time magazine. Reflecting on the festival, Woodstock co-creator Michael Lang told the Daily Express in August 2009: “We were hoping it would be a seminal event for our generation . . . but we had no idea it would be seminal for other people as well.” The hippie ideals of “peace and love” didn’t last through the jaundiced decade that followed. Still, Lang said that Woodstock’s message remains relevant in the 21st century.
Perhaps most akin to Woodstock today is Burning Man. Dubbed by its organizers as an “experiment in community and art,” the annual gathering in Black Rock City, Nev., attracts an estimated 66,000 during the last week of August. The desert festival, which celebrated its 30th anniversary this year, began on San Francisco’s Baker Beach as a bonfire ritual during the summer solstice. The event, over time, took its name from its burning of a 40-foot, neon-lit, wooden effigy: “The Man.” Meanwhile, revellers — known as “Burners” — dance on the desert basin as electronic music is played by live, celebrated DJs. Some attendees can be found in spacesuits, head-to-toe bird outfits or just glow-in-the-dark body paint.
“This decadent ritualism, which can be both sincere and satirical, casts the festival as a semi-religious cultural happening,” Lee Gilmore, author of the 2010 book Theater in a Crowded Fire: Ritual and Spirituality at Burning Man, told Religion Dispatches in June 2010. “. . . Intriguing is the incredible array of art and ritual contributed by [Burning Man] participants that often creatively appropriates symbols and motifs from the infinite well of humanity’s cultural and historical experiences: temples, labyrinths, demons, angels, gods, goddesses, priests . . . almost anything imaginable . . ."
Interestingly, religion and spirituality do play a part in Burning Man, according to the festival’s own 2015 census. Although more than 70 percent of attendees report that they don’t belong to a religious denomination, more than half have some sort of belief system. Of these, about 45 percent are “spiritual but not religious.”
“I think Burning Man shows us the enduring importance of ritual as a vehicle through which humans connect with one another and as well as with a mysterious ‘more,’” said Gilmore, who is also a professor of religious studies and anthropology at California State University. “. . . Burning Man provides a venue in which to seek transformation for both the self and beyond. I also think it is symptomatic of America’s puritanical heritage to attempt to strip away the festal or carnivalesque elements of religion from what some might consider to be ‘authentic’ piety. But historically and cross-culturally, opportunities for celebration are often part of the ‘package deal’ that religions offer.”
By 2018, Osheaga organizers plan to accommodate as many as 65,000 people daily. They say that they aspire to stay true to their vision and purpose while appealing to an even wider audience. Of course, “the Age of Aquarius” may not be dawning again. But like Woodstock before them, these outdoor music festivals have the potential to shape what participants call the “default world” outside of places like Île Sainte-Hélène and Black Rock City.
As this year’s festival-goers converge one last time at Osheaga’s “River Stage,” the soaring sounds are in perfect sync with the rock-concert lighting — in hues of blue, red and green. Attendees’ arms are outstretched toward the popular, existential rockers, Radiohead. Here, the British band’s psychedelic and orchestral pop is at once mystifying and elevating. Lead singer Thom Yorke’s crooning is choir-like — even resembling Gregorian chants. Toward the end of the two-and-a-half-hour set, the band plays one of the last of its many encores, Paranoid Android. And its final lines linger as a kind of spiritual affirmation: “God loves his children, God loves his children, yeah!"
Northern Ireland’s Troubled Generation
A decade of peace has coincided with a disturbing spike in suicides among Catholic and Protestant youth
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, September 2008
BELFAST, Northern Ireland — There’s something uneasy in the Belfast air this Tuesday: the cotton-wool sky gives way to row houses and shielded shopfronts — most of it hidden behind skeins of fog. There’s the din of snack trucks and Gardai cars traversing wet concrete — their horns and sirens giving off a Doppler-shift whine. Also the bawls of straggling high schoolers and the clatter of windswept debris.
The noise is stark compared to the squinty-faced silence of Philip McTaggart, who shuts himself away from it all inside his North Belfast brownstone. Posturing loosely and with his broad shoulders keeled slightly, he instead preoccupies himself with wallet-sized photos of his son Philip — the first one showing Philip at an early age resting on his father’s shoulders. In another, he’s holding his baby sister up during his 15th birthday celebration. The teenager’s relaxed, devil-may-care attitude is evidenced in all but one photo — the last picture ever to be taken of him. “You see, there was something wrong with him right there,” McTaggart says, with a North-Irish brogue. “He just wasn’t happy. He was disconnected. Back then, my Philip was just trying to find his way through life and yet somehow he got lost.”
On April 23, 2004, Philip McTaggart Jr. hanged himself from a chestnut tree outside Holy Cross Catholic Church, in Ardoyne, North Belfast. He was only 17. Following Philip’s death, there was no excited knocking on the door, no opening of arms, no smothering of kisses. Instead, McTaggart and his family were closely investigated by police, coroners and insurance agents. Says McTaggart: “If someone dies of natural causes, from disease or because of an accident, people say, ‘Oh, this is terrible. God help the poor family.’ But the attitudes are somehow different if someone completes suicide.”
In the weeks and months after his son’s death, McTaggart wanted to be of some comfort to other Belfast families who had lost loved ones to suicide. Together with social worker Jo Murphy, he began hand-delivering pamphlets, and the positive reception led them to establish the Public Initiative to Prevent Suicide and Self Harm — known simply as PIPS — a project dedicated to the memory of McTaggart’s son, who was nicknamed Pip. McTaggart, at 44, is the chair of PIPS and volunteers his time as a counsellor. It has meant giving up his day job in the building trade.
Philip McTaggart Jr. was just one of hundreds of young people in Northern Ireland to have died unseasonably. His death was the first in a cluster of suicides in the Catholic community of Ardoyne. In all, 13 young men took their own lives here in six weeks — events that still linger over row houses like black plumes. Nearly a decade after peace broke out in the bitterly divided country, grieving parents are now asking a question that is neither Protestant nor Catholic: why?
Wondrous crags, luminous greens and wildflowers — Northern Ireland’s landscape has an almost mystic resonance. The capital city of Belfast also holds dear its rich heritage, with muck-and-brass architecture and moss-covered stonework. Former Catholic bishop William J. Philbin once described Belfast as “a city walled in by mountains, moated by seas, and undermined by deposits of history.” The sectarian conflict — the Troubles — raged here and in other parts of Northern Ireland for 30 years, resulting in more than 3,600 deaths and some 40,000 injured. It has now been 10 years since the Good Friday Agreement, which saw the formation of a joint Catholic-Protestant administration, including the nationalist party Sinn Féin. It has been one year since British troops withdrew from the country’s border area, completing a 38-year mission to keep watch over the Irish Republican Army.
Today, more than 1.7 million people live in Northern Ireland, according to the most recent Northern Ireland Census. Of the estimated 45 percent who are Protestant, the majority are loyalist, preferring that Northern Ireland remain a part of the United Kingdom. About 40 percent of the population is Catholic, many of whom identify themselves as nationalist and strongly favour a united Ireland.
The country is further down the path of reconciliation than many could have imagined, but the healing is far from complete. Suicide rates here have skyrocketed. A total of 242 people took their own lives in the country last year, according to the Northern Ireland Statistics and Research Agency (NISRA). In 2006, almost 300 people completed suicide — the highest number ever recorded in Northern Ireland’s history — compared to the low of 47 people in 1972, one of the bloodiest periods of the Troubles. But the numbers are likely greater because, as researchers point out, police in rural areas often report suicides as “accidents” to protect the privacy of relatives. NISRA also reports that suicide and self-harm in the country are most prevalent among young adult males. A higher number of deaths happen in urban areas, especially in the predominantly Catholic parishes of North and West Belfast.
To hear of suicide is chilling, numbing. But the stubborn core of suicide in Northern Ireland is as troubling as it is perplexing. This is a society that has been brutalized and traumatized by the years of violence. Depression and anxiety are widespread. And for all the success that peace and power-sharing have brought, they haven’t completely exorcized the North’s sectarian demons.
Deidre O’Neill’s brother John had been going through one of life’s rough patches. Neither a cluster of silver balloons nor anti-depressants could cure the charcoal mood he was in. According to O’Neill, he had been a call centre employee who garnered all sorts of prizes for hard work and leadership but had taking time off work for stress.
Then on Aug. 5, 2006, during a visit with his mum and siblings, John suddenly left the house, promising to return within the hour. He said he had to retrieve something from his home in West Belfast. But that hour turned into an entire evening, prompting O’Neill and her mother to go looking for him. Upon driving up his street, they found a flashing ambulance in front of his home. That’s when they learned that John had hung himself from the handle of a door leading to an attic space. Tucked away in his wallet were two handwritten notes: one for his partner, Ciara, and his four-year-old daughter, Caitlin, and the other for his parents and siblings. The letters were less angry than they were apologetic, according to his sister. He wrote that he didn’t feel happy and that he wasn’t living up to what he should be. He mentioned that he loved everyone and that he was very sorry.
“Johnny died just two days before his 24th birthday and it seemed he had his whole life ahead of him,” says O’Neill, her shoulders slumped and eyes softened. A tiny gold cross hangs from a dainty chain around her neck. “He was very proud of his young family, especially wee Caitlin, who he doted on and spoiled silly and often carried on his shoulders. Passing away, he has missed her very first day of school. Come to think of it, there will be plenty more firsts.”
O’Neill, now 32, still counts the months since John took his life. She decided to join PIPS as an administration officer in February. “To be honest, we don’t know what happened with John; there was nothing specific we could pinpoint. . . . “One thing is for sure: what happened changed our lives. . . It created a huge hole in our family that will never go away.”
“Why?” is always the hardest question to answer. In some cases, suicides can be linked to drugs, alcohol and solvent abuse. But in Northern Ireland, that’s the tip of the iceberg. The 2005 survey produced by Queen’s University in Belfast examined the long-term psychological effects of sectarian violence on society. Researchers found that a “considerable proportion” of the population experience “significant mental health problems,” which they partly attribute to Northern Ireland’s troubled past. Post-traumatic stress disorder, for example, is twice as common in Northern Ireland as it is in bordering counties. During the conflict, people’s coping mechanisms included a combination of “habituation, denial and distancing,” researchers noted. However, since the decrease in violence in the country, people have simply become less resilient to trauma.
A “national disaster” is how Gerry Adams, president of Sinn Féin and MP for West Belfast, describes suicide. “In my constituency, especially, recent suicides have convulsed local communities, exacerbating the sense of powerlessness that people may feel in their present realities,” says Adams, the Irish Republican politician who played an important role in the Northern Ireland peace process. “Part of the problem is that here in the north of Ireland, with the war over and people coming out from the trenches, there is less cohesion in particular communities. No longer facing threats and heavy militarization, neighbourhoods aren’t as tightly knit together as they were before. . . . But together, they suffer the events of suicide. Parents and peers feel guilty while the rest of the community worries about who will be next.”
This cycle of deaths has followed a familiar pattern, he says, with people living in the most economically deprived areas being most at risk. “Those academically unqualified have a greater difficulty accessing jobs in this new climate. . . . In Northern Ireland, like any other country where there has been great societal change, there is widening gap between the have and have nots, the blue-collar and white collar workers.”
Churches, once pillars of sectarian identity, are also caught in the currents of change. A decline in religious practice and a string of sexual scandals have helped to collapse what religious commentator Sean MacReamonn described as the “cultural scaffolding,” made up of “habit, assent, consensus, obedience [and] tradition,” within which churches thrived. A much more complex Ireland has emerged, one that is increasingly multicultural, diversified and secular.
Yet the churches still hold sway. It’s said that priests and ministers can still be found to-ing and fro-ing from parliament buildings. And during civil disturbances, it’s usually up to clerics to make sense of the situation. In 2001, Fr. Aiden Troy, the rector of Holy Cross Catholic Church and well-known civic peacemaker, witnessed one of the most shocking events in Belfast’s Ardoyne community and, indeed, in the North’s recent history. For several weeks in the fall, young children, parents and teachers going to and from Holy Cross primary school were subjected to taunts by Loyalist protesters. The placard and whistle protest, characterized by urine-filled balloons, pornographic posters and jeers about “Fenian whores,” arose following accusations that some Republicans had used the school route as cover to disturb surrounding Loyalist neighbourhoods. However, after several riotous weeks, Troy helped to bring the blockade to a peaceful end.
More recently, Troy has turned his attention to the problem of youth suicides. In addition to providing counseling, he engages young people whenever they come to get their travel papers signed — what he calls “the passport apostolate.”
“Self-esteem is quite low among youth and hope is sometimes lost,” he says. “In our post-conflict situation, their parents and grandparents may also find it difficult to live with this newfound peace. The days of vigilance to defend their area and to remain within the locality where everyone knew each other has passed. This new situation is leading to challenges to embed the peace and live in a more ‘normal’ way. One of these, of course, is suicide.”
Holy Cross is also where 18-year-old Barney Kearns took his life in February 2004, having attended the Requiem Mass and burial of his friend Anthony O’Neill, also 18 and a victim of suicide. After the funeral, the Kearns and O’Neill families went to a local club for food and drink. It was from there that Barney Kearns left, crossed the Crumlin Road and entered the Holy Cross grounds. A passing taxi later discovered him hanging from builders’ scaffolding atop the church tower.
“I quickly climbed up the scaffolding as soon as I was told about a body hanging on high,” Troy remembers. “All that could be done was to call out to the person in the hope that he might still be alive and assure him that help was on the way. . . . The emergency services arrived and with some difficulty recovered the body. On coming down from the scaffolding, a man approached me and asked what colour top the young person was wearing. I told him, and his reply was, ‘That is my son.’”
In the year before their suicides, nationalist gangs shot Kearns in both legs and forced O’Neill down a manhole for several hours. Former paramilitaries are now known more for violence and drug trafficking than advancing any political cause. Though they operate along sectarian lines, their victims are Catholic, Protestant or anyone else who stands in their way. Troy insists that these so-called punishment beatings had a devastating effect on the mental health of the two young men. As well, he alleges that hardliners on both sides are to blame for other suicides.
During the Troubles, the church helped to prevent society from going over the brink, but suicide and self-harm are different pastoral challenges, according to Lindsay Conway, the director of social services for the Presbyterian Church in Ireland. Conway says that the churches have moved on from the days when suicide was seen as both a sin and crime, when victims were even denied a sacred burial. The fear of eternal damnation that may have deterred suicidal people is waning.
“Today, young people are not coping at a level that is practical,” he points out. “They reach crisis an awful lot sooner than previous generations. When something bad happens to them, when somebody rocks their boat, it’s not chalked down as experience. It’s considered tragic in their minds.”
Conway continues: “This generation e-mails and texts until their thumbs wear out. But they’re not talking. They can’t say aloud, ‘I’m struggling — with school, work, relationships, sexuality.’ So there’s a desperate hopelessness there.”
Northern Ireland’s four main denominations have started to show a unified force, though. In February, church leaders discussed suicide with the country’s Assembly Health Committee. In a statement, clergy heads acknowledged that “churches have a clear role in the managing of this major social problem. It’s a process that begins with a funeral service, then a visit with a bereaved family and, in many cases, will continue for months and years.”
Rhonda Hill’s daughter Denise took her own life in September 2004. The 14-year-old, like many female suicides, overdosed on prescription pills. To her parents, Denise didn’t seem to suffer from depression, rather she was a “bubbly, happy-go-lucky girl.” As such, her death came as a total shock to her family and friends.
“We had no warning, no tell-tale signs,” Hill told the Irish News. “Following Denise’s death, we went through a phase of asking questions: why did she do it; why did I not see something; why did she not tell us — what do we do now?”
Following the death of her daughter, her 16-year-old son Joe attempted to kill himself three times. Says Hill: “Our son couldn’t cope with the loss and felt he should have noticed something was wrong. It took us eight months to persuade him to go and see a psychiatrist … we then kept constant watch, not living day by day but minute by minute.”
Frustrated with the lack of support services in the Greater Shankill Area — a predominately Protestant community — Hill and her husband, Michael, helped to set up the Greater Shankill Families Support Group. It was good to talk about her loss with people who understood. Only then did Hill realize that it was okay to laugh and not feel guilty. And most importantly, she knew her family wasn’t alone in a city — and a country — preoccupied with keeping the peace.
The spectre of violence is certainly not as stark as it once was. Yet the barbed wire remains, as does the 40-year-old Peace Line, the six meter-high wall of corrugated steel, chain link and concrete that zigzags through Protestant and Catholic communities of West Belfast. It’s outlasted the Berlin Wall although there is now talk about pulling it down, along with other barriers throughout Northern Ireland.
There is still the diverse array of political murals along the Catholic Falls and Protestant Shankill Roads. Off these thoroughfares, on the sides of shops and houses, Nationalist and Loyalist icons are immortalized and fallen brethren are honoured. Though, the more radical, hate-filled paintings by paramilitaries have been replaced with advertisements for junior football clubs, black taxis, home heating and, of course, suicide awareness.
There is still the marching season, between April and August. Tens of thousands of Protestant hardliners annually parade through Belfast and other Northern Ireland communities. On July 12, the Orange Order march commemorates the 1690 victory by the Protestant king, William of Orange, over the Catholic he ousted from the English throne: James II. The event used to spark tensions between its participants and Catholic bystanders. But in one more sign of rapidly changed times, Catholic protesters now heave up anti-Orangemen placards instead of Molotov cocktails, allowing the “kick the Pope” bands to pass peacefully.
Not least of all, there is Féile an Phobail, also known as the West Belfast Festival. However, what began as a politically charged parade during the height of the Troubles has become a carnival filled with traditional Irish music and drollery. Sinn Féin’s Gerry Adams says: “A sense of Irishness, a sense of Republicanism, a sense of being from West Belfast are still very acute in my constituency. But if you’re a 16-year-old, you probably won’t have any real memory or consciousness of the Troubles. My own grandchildren have never seen a British soldier or endured house raids and arrests; gun battles and explosions. I’d say they — and the vast majority of people on both sides — have a genuine desire to move forward. All that’s a good thing.”
Progress is doable, Adam says, but it is not inevitable. Séin Feinn wants unemployment, education and leftover sectarianism pushed to the top of the assembly’s agenda. On the issue of suicide, it has long lobbied for a regional prevention strategy and, in September 2007, Northern Ireland’s Department of Health allocated more than £3 million to such a plan. More recently, the department put its weight behind a 24-hour suicide helpline.
Paradoxically, while the Northern Ireland Assembly goes through its growing pains, the issue of suicide is bringing Protestants and Catholics closer together. Squeezed between the two enclaves in North Belfast, PIPS provides counselling, family support meetings and self-harm workshops to people of all religious backgrounds and political stripes. As Philip McTaggart puts it, “We’re in the right place and everyone feels PIPS is theirs, which is important. Religion and politics is left at the door.”
McTaggart remembers giving solace to a former member of the Royal Ulster Constabulary (RUC), which served as the police force in the country until 2001. British security forces praised the RUC for keeping order during the Troubles, but the nationalist community accused it of one-sided policing. On that day, the RUC man was simply someone needing help for a close relative. He wandered into PIPS carrying two big boxes of chocolates.
Atop a hill, in the rearward grounds of Holy Cross Roman Catholic Church, the winds come howling through the undergrowth. McTaggart stands before his late son’s memorial, a shrine of withered bouquets, weather-beaten plush toys, holy candles and pendants, as well as more faded pictures. A simple plaque is also screwed into the chestnut tree on which the young man hanged himself.
For McTaggart and other community workers, it’s been like an endless banquet of loss. But eventually, he admits, the tables will be wiped clean, the plates will be washed rigorously and the silverware scrubbed free of debris.
“These days, I feel a little happier with myself,” McTaggart says with a rueful smile. “I have to be as cheerful as I possibly can in order to make my wife and other two kids happy.” His son’s old chums seem happy, too. Some of them are married with children. Some still go to the discos and bars. Inevitably, McTaggart wonders what Philip would be doing today. Barbering? Bartending? Would he have a wife and children of his own?
“However much I’ve accomplished, I don’t think I’ll ever have complete closure. I don’t think anyone can after the suicide of a loved one because you’re constantly asking why and what if . . . those big questions. I’ll be doing that for the rest of my life, I suppose.”
Pacifism in a Post-9/11 World
Does traditional pacifism still have a role in the 21st century?
By KEVIN SPURGAITIS
Originally published in the UC Observer, September 2011
Forever seared into the collective memory is the devastation left by four hijacked passenger planes 10 years ago this month: the twin towers of New York City’s World Trade Center barrelling to the ground, leaving thousands — dead and alive — enmeshed in its remains; the pillow of pitch blackness rising up from the Pentagon’s west wing in Washington, D.C.; and the debris of Flight 93 strewn across a field in Shanksville, Pa.
Nine-eleven “came as a deep shock to those who have dedicated their lives to peace,” non-violence activist Michael Nagler wrote in his paper Hope or Terror? Gandhi and the Other 9/11. “Whether or not we lost a loved one in that explosion of hatred (as I did), violence challenges our faith and adds an extra dimension of grief for those who feel most poignantly the futility of violence.”
The attacks of Sept. 11, 2001 by al-Qaeda resulted in nearly 3,000 deaths and a profound sense of insecurity. Emerging from 9/11’s fissures today are three disparate visions of how to bring about peace. The first, led by the United States, has been the pre-emptive “war on terror” in places deemed the seedbeds of international terrorism. The second advocates a total commitment to pacifism in order to break the cycle of war, while a third position argues against both — that pre-emptive strikes are too aggressive but that pacifism, too, is an impractical doctrine in today’s world. Such critics say that the failure to resolve bloody conflicts in places like Sudan and Rwanda is just as inhumane; staging a military intervention in order to protect vulnerable people caught in war is the greater moral, ethical imperative. With the 10-year anniversary of 9/11 now upon us, with global conflicts continuing to put millions of lives at risk, perhaps Canadians and people of faith would do well to reflect on these competing visions of peace.
During the 1930s, pacifism was a formidable movement in Canada, and the Fellowship for a Christian Social Order, which included clergy and lay members of the newly founded United Church of Canada, was a strong objector to war. The ideal of non-violence had captured the group’s moral imagination after humanity’s capacity for destruction reached unprecedented levels during the First World War. When the Second World War broke out, many within the United Church struggled with Canada’s involvement. Nevertheless, while some clergy and laity remained pacifist or became conscientious objectors, most supported the war effort.
The church has never been a consistent proponent of non-violence when Canada goes to war, according to Very Rev. Bruce McLeod, now 81. “When you become a large [denomination] like the United Church, you far too easily become victims of the culture, losing the ability to stand over and against the status quo,” the former moderator says. “I’m not a doctrinaire pacifist, but I’m enough of one that I have never volunteered for military service.” He hopes there would be some level “of sophistication or skepticism on the part of citizenry as leaders wave their flags, blow their trumpets and summon them to the latest killing field.”
In 2008, responding to the “massive cruelty” of systematic killing and rape in African nations, the United Church endorsed a policy of “responsibility to protect.” It followed the World Council of Churches’ adoption of a similar position in 2006 — a growing international norm that looks beyond state sovereignty to the international community’s obligation to safeguard civilians caught in conflict.
Rev. Peter Denton is a United Church minister who teaches history at the Royal Military College in Kingston, Ont. In the book Believers in the Battlespace, Denton and his co-authors argue that military intervention creates more problems than it solves. “To make armed intervention the preferred tool for expressing international concern in the 21st century is to render ourselves clumsy and destructive — the well-intentioned bull in a china shop whose best option before very long is to get out before more damage is done.”
After nearly a decade of war in Afghanistan, Canada officially ended its combat mission in July, withdrawing almost 3,000 troops. Very Rev. Peter Short has shaken the oil- and grit-stained hands of Canadian soldiers — as well as those of Afghan army officials and civilians — as a member of the Interfaith Committee on Canadian Military Chaplaincy. “History will tell whether Afghans are better or worse off because of our involvement,” the former moderator admits. “At the same time, I think that Canada’s willingness to act and to sacrifice through the medium of the United Nations is a stride in the right direction. The world is small now and nations are intimate with one another in unprecedented ways. We cannot be indifferent or isolationist.”
In human terms, the American-led war on terror has resulted in 365,000 people being wounded and 7.8 million displaced in Afghanistan, Pakistan and Iraq, according to a study by Brown University’s Watson Institute for International Studies. An estimated 225,000 people have been killed — including 125,000 civilians in Iraq — and many more have died from the loss of access to health care, nutrition and clean drinking water.
In November 2005, Canadian James Loney and three other peace activists were taken hostage in Baghdad. Loney was in Iraq as a member of the Christian Peacemaker Teams, an organization that practices non-violent intervention in conflict zones. In exchange for freeing the hostages, the captors demanded that the United States release everyone it had detained in its occupation of Iraq. As a warning to the U.S. government, they murdered one of the activists, American Tom Fox, dumping his body in a Baghdad street.
Loney and the remaining hostages were rescued in early 2006 by British and American special forces. In his book, Captivity, Loney acknowledges the paradox of his liberation by a “phalanx of soldiers” — one of whom asked him to think long and hard about his peacemaking activities and the many people who risked their lives to save him.
Today, however, he is able to reconcile his rescue with his peace activism. “Simply put, we wouldn’t have been kidnapped if the U.S. and Britain hadn’t bombed, invaded and occupied Iraq, setting in motion the insurgency,” Loney says. “The institution that saved us created the very circumstances that required our intervention. . . . Our captors lost family members, they were full of hate and rage, and they took up the gun to end the occupation of their country. . . . They merely kidnapped us to get money to buy those guns.”
Loney often talks about “breaking from the mad spiral of retribution — the eye-for-an-eye, bullet-for-a-stone and bomb-for-a-bullet” mentality. “There is this blind faith in the efficacy of violence,” he says. “But human freedom truly begins when we live in accordance with this purpose: giving life, and not taking it.”
But others — even committed peace activists — point out that the refusal to intervene in conflicts produces more victims. Ernie Regehr is the co-founder and former senior policy adviser to Project Ploughshares, an ecumenical agency of the Canadian Council of Churches based in Waterloo, Ont., that promotes conflict resolution through non-violence and opposes arms transfers to the developing world. In the spring of 2003, Regehr travelled to southern Sudan as part of a small international assessment team. Earlier that year, a guerrilla conflict had engulfed the Darfur region of Sudan. Rebel groups took up arms en masse, accusing the government of oppressing non-Arab Sudanese. According to the United Nations, the Darfur conflict affected more than five million people, with several hundred thousand dead from direct combat, starvation or disease. Inside one encampment, Regehr met internally displaced people who had fled their burned homes and bombed-out villages in the Western Upper Nile.
The southern Sudanese saw themselves as “abandoned and victims of inaction,” he says. “Saying to them, ‘We’re not going to help you on the basis of [pacifist] principle and personal views’ was very difficult for the Sudanese people to understand. They would look at you and say, ‘Whether you participate in the Sudanese government’s bombing mission against us or stand by and do nothing, whether your inaction is the product of indifference or of a principled commitment against military intervention, it’s all the same thing to us.’”
So, too, was the international community derelict when it refused military assistance to UN peacekeepers during the Rwanda genocide, according to Regehr. Over the course of 100 days in 1994, Hutu hard-liners slaughtered an estimated one-million minority Tutsis and moderate Hutus.
Says Regehr, “In the days of the bow and arrow and the single-shot rifle, the dangers of escalating violence were very low. But in most modern wars, in which state-of-the-art precision-guided munitions are used, civilian and military casualties are much higher. As such, the aim of pacifism can’t be to isolate ourselves from the direct commitment of violence. We have to be committed to building the kind of societies in which the overall level of violence is reduced and is controlled over time.”
Since 1987, Project Ploughshares has tracked armed conflicts in the world. At least 64 wars have ended during the past 23 years, it says. In a minority of cases, governments defeated insurgents, or rebels prevailed and had their demands met. In a third of conflicts, fighting essentially dissolved. Half ended through negotiated settlements.
Last March, NATO forces, led by a Canadian general, enforced a no-fly zone over Libya. The International Criminal Court later demanded the arrest of Libyan leader Moammar Gadhafi for the killing, injuries and imprisonment of hundreds of civilians during the recent uprising in the country. Canada has defended as well as participated in NATO’s Libya mission, although the intervention — like that in Afghanistan — has been criticized as modern imperialism disguised as humanitarianism.
Conscience Canada, an organization that opposes the use of income tax dollars for military purposes, takes issue with Canada’s involvement in the region. “Today, supporting the troops morally and economically has pulled Canadian society toward a more militaristic frame of mind,” says Donald Woodside, a Quaker and the past-president of Conscience Canada. “Society seems to be much more willing to take the risk of annihilation and destruction through war than to take the risk of non-violence.”
He adds that the socialization toward war makes ending armed conflict much more difficult to negotiate. Violence, short of obliterating “the enemy,” will not bring dictatorships, let alone insurgencies, to an end, he says.
Although this month marks the 10th anniversary of the Sept. 11 attacks, peace builders around the world remember Sept. 11 — 1906 — as the birth of Mahatma Gandhi’s satyagraha or “soul force.”
“By strange coincidence, on Sept. 11, a date that now lives in infamy, Gandhi launched a new way of waging conflict that many believe can lead humanity from the mire of hatred,” says Michael Nagler, the author of Is There No Other Way? and president of the Metta Center for Nonviolence in Berkeley, Calif., which commemorates satyagraha annually.
To be sure, the 21st-century world is in a round-the-clock state of conflict. But Nagler says that “conflict is a natural part of life, and we need to find creative ways of dealing with it instead of wishing it will somehow go away.” He cites the gradual collapse of communist states in the early 1990s as examples, as well as the Arab spring, the Tunisian and Egyptian uprisings, which for the most part led to a peaceful transfer of power earlier this year. In his paper Hope or Terror?, Nagler writes, “Whether we’re aware of it or not, [St. Augustine] said, our deepest desire is ‘to seek fellowship and as far as we possibly can, peace with every man’ and woman — and all that lives. But those of us who work for peace are perhaps more aware of this desire and feel violations of it all the more deeply, for we not only long for but believe in peace — believe that it is possible even in our time.”
Will an expanding universe lead to an expansion of consciousness?
By KEVIN SPURGAITIS
Originally published in the UC Observer, February 2010
Last October, something extraordinary happened in the field of space exploration: 32 lonely planets were discovered floating outside Earth’s solar system. The existence of the so-called exoplanets was announced at the University of Porto’s Center for Astrophysics. Among the total 370 worlds astronomers have now identified are the Icarus-like “hot Saturn,” approximately 260 light years from Earth, and the scorched “hot Jupiter,” circling another star half the distance out. What’s coming into clearer focus too with the help of the Hubble Space Telescope and others: huge sheet-like superclusters — generations of stars that arose and then perished, their spectacular deaths spreading complex particles that eventually formed planets and allowed life to evolve, at least here on Earth.
Also in 2009, the world’s largest atom smasher, the $10-billion Large Hadron Collider, was reactivated following a false start the year before. It’s now helping scientists understand the makeup of the universe and its tiniest particle, nicknamed “the God particle” because its discovery could unify particle physics and help humans know the mind of God. Ultimately, the collider aims to recreate the conditions one-trillionth to two-trillionths of a second after the big bang, which scientists say marked the beginning of the cosmos.
Science, specifically cosmology, is revealing the universe as far more vast — and potentially more meaningful — than anyone could ever have imagined. From their space and ground-based observatories, cosmologists are providing glimpses of incandescent nebulae and glowing supernovae, as well as a look back into the time before galaxies were even formed. Not only are they on the verge of uniting space sciences under one mathematical umbrella — often called the “theory of everything” — they’re articulating a new Genesis story. They are figuring out how and when the universe began, what it’s made of, how big it is and how likely it is that other intelligent life exists. Scientists say that eventually, they may be able to tell us who we are and where we came from.
So will new cosmological discoveries render religion obsolete? Or could 21st-century cosmology, like ancient cosmologies before it, help enlighten and guide the way for humanity, perhaps even leading it beyond religious polarization? As American astronomer Carl Sagan once said, “A religion that stressed the magnificence of the universe as revealed by modern science might be able to draw forth reserves of reverence and awe hardly tapped by traditional faiths. Sooner or later, such a religion will emerge.”
Looking up at the heavens, early scientists first came up with a rather bleak picture of the universe: an endless emptiness randomly filled with stars. In the 17th century, the French physicist and philosopher-monk Blaise Pascal wrote that he felt tossed into a scientific universe that was “cold, shapeless and incomprehensibly huge,” in which humans are left feeling small and insignificant. This early Enlightenment universe was akin to a majestic, high-ceilinged cathedral — an impression that has lasted until only recently.
Today, our understanding of the universe has completely changed, says leading cosmologist Joel Primack, a professor of physics and astrophysics at the University of California. Back in the 1970s, Primack and other astronomers developed the cold dark matter theory, which explains how structures form in the universe.
Then about 10 years ago, the uncertainty regarding the basic parameters of the universe — as well as the expansion rate of the universe and the age of the stars — was resolved rather suddenly. Basically, for the very first time in human history, scientists had a picture of the origin, evolution and structure of the universe that was consistent with all the data and theories. “It was a fantastic development,” Primack says. “We’ve never had anything like this before.”
He is now using supercomputers to simulate the evolution of galaxies. “Perhaps the biggest change may be the realization that space is not simply emptiness, and we humans are not merely a random growth on the surface of a small planet of an average star, as many people have assumed for generations,” he says. “Today’s golden age of astronomy reveals a universe that is rich, fascinating and meaningful. It’s not just ‘out there’ but right here. And in it, we humans occupy an extraordinary place.”
Of course, cosmologists have a great deal more to learn. In the 2006 book The View from the Center of the Universe, which Primack co-wrote with his wife, philosopher Nancy Abrams, he says this new “scientifically accurate” creation story will continue to shape our understanding of our place in the universe for thousands of years. “The psychological and spiritual impact on me has been enormous,” says Primack. “And I think that all scientists who’ve made significant discoveries have had somewhat similar experiences. It’s not so different from the experience that religious people have in their revelations.”
Yet in a recent Yale University address, Primack said the universe has played no part in mainstream religions in modern history, except perhaps to demonstrate the glory of a creator.
One reason faith groups tend to ignore cosmology, according to theoretical physicist Stephen Hawking, is that the investigation of space and time has profound implications for the role of God in the universe. In his 1988 book A Brief History of Time, the renowned British scientist proposed that if the universe were completely self-contained, having no boundary or edge, it would have neither a beginning nor an end. It would simply be. “What place, then, for a creator?” he asks.
Likewise, Nobel Prize-winning physicist Steven Weinberg paints a picture of a “chilling, cold” universe with no significance for humankind. “The more the universe seems comprehensible, the more it also seems pointless,” Weinberg, an avowed atheist, wrote in his 1993 book, The First Three Minutes. Not surprisingly, it annoyed many religious believers.
For Christians and those of other faiths, the universe is inherently purposeful and humanity’s role in it is central. Historically, the Roman Catholic Church has vigorously defended its view of the created universe. There was Italian philosopher Giordano Bruno, who was burned at the stake as a heretic in 1600 for speculating, among other things, that other worlds could be inhabited. In 1633, the church also placed Galileo, the father of modern science, under permanent house arrest for challenging the view that Earth was the centre of the universe. But in the centuries since, the Vatican’s views have shifted radically.
In February 2009, the Vatican called for the study of the possibility of extraterrestrial life and its implications for the Catholic Church. It brought together astronomers, physicists and biologists to discuss the topic at a five-day conference in Rome — something that could not have been imagined without cosmological advances, says Vatican astronomer Guy Consolmagno.
The scientist has been scanning the heavens for two decades with the Vatican Observatory’s advanced technology telescope — known affectionately as the “Pope Scope.” Nestled in a silvery-white dome inside a state-of-the-art facility on the summit of Arizona’s Mount Graham, the telescope is giving Consolmagno hints about an interconnected planetary family. Here, science and faith coexist seamlessly.
“It’s hard for me to imagine why anybody would think there was a conflict between the two,” says Consolmagno, who is also a Jesuit brother. “Although a lot of people, especially very devout people, are afraid of science, [the Vatican Observatory] shows that a great way of getting to know the Creator is through that joy that we experience when we look up at the stars. [Science] causes us to look at God in a much bigger way. We want to encourage all religious people to embrace it and not be chased away.”
In the 2006 PBS documentary Faith and Reason, physicist and theologian Robert Russell, director of the Center for Theology and the Natural Sciences in Berkeley, Calif., pointed out that in the modern scientific age, theologians and religious people simply cannot afford to ignore new space discoveries. “In order for religions to maintain the power of their moral teachings, they must be seen to be in harmony with the truths of science.”
Michael Bourgeois agrees. He is an associate professor of theology at Emmanuel College, within the University of Toronto. His research includes the origin and destiny of the universe, as well as the relationship between evolutionary biology and Christian theology.
“I am someone who looks at the Hubble Space Telescope images with a sense of awe and wonder, and I think some of the people involved in putting together the composites recognized the kind of inherent beauty in those images,” he says. “Today, it’s now a short step to be asking questions about the significance of the findings of astrophysics and cosmology, particularly around the expanse of the universe. The findings of science will continue to stretch our current understandings of meaning and purpose. And in some cases, for individuals and perhaps for some religious institutions or churches, that stretching will lead to some snapping of particular understandings.”
After all, the last scientific revolution, which saw the Copernican-Newtonian cosmology overturn the medieval one based on the heavenly spheres, eventually undercut the rigid social and religious hierarchies of the time. And the royalty of France and England lost not only their thrones, but their heads.
Says Bourgeois, “One of the regretful things is that Protestantism and Catholicism once neglected the idea that inherent in both traditions is the ability to respond to new situations. And that doesn’t mean that you’re starting from scratch every time, turning your back on what’s been important in those traditions up until that time.”
Similarly, almost all the great pioneers of science were religious people who wanted their findings to support their faith. Contrary to popular belief, all three founders of the sun-centred cosmology — Nicholas Copernicus, Johannes Kepler and Isaac Newton — felt that their new understanding of the universe was merely an extension of their theology. Newton’s whole life’s work was purportedly a search for God. Even Galileo, a committed Catholic, wanted nothing more than for the pope to affirm his perspective of the heavens.
So what’s on the horizon? For starters, more learnings from old stars. Primack says these messengers in radioactive form, speaking the strangest languages anyone has ever heard, have been running through space for billions of years and are reaching Earth with news of their eras. It’s as if a runner from ancient Greece were just arriving today, breathless, carrying news of great consequence.
“As cosmic phenomena living in a cosmically pivotal moment, we must elevate our thinking to the level that our times demand. . . . An essential ingredient is portraying our universe with all the power and majesty that earlier peoples evoked in expressing their own cosmologies. Mythic language is not the sole possession of any specific religion but is a human tool; we need it today to talk about the significance of our universe.”
Such a historical sweep of understanding will lead humanity to a “wonderfully long-term future lasting literally billions of years,” Primack predicts. “But we’ve got to undergo a transition in the next generation or two, from exponential use of resources on the planet to more sustainable relationships. . . . That’s how we make our spirituality as real as possible.”
But the Vatican’s Consolmagno doesn’t look to the heavens to affirm his faith. “It’s not that my science underpins my faith, rather that my faith underpins my science,” he says. “In the end, science cannot prove God or disprove Him; He has to be assumed.
“Our worth, our joy and our meaning comes from the fact that in a universe this big, a God who is so much bigger than it can still have a personal relationship with me, with you and everyone else, including whatever green creatures are waving their tentacles in prayer in Alpha Centauri. . . . And faith will continue to grow nonetheless if it’s a true faith, if it’s not a dead faith.”
Consolmagno says that he never expected to see the day when there would be hundreds of planetary systems beyond our own to muse about. And he admits there are still some theological and philosophical questions to which we don’t have all the answers. “But simply knowing that the answers are out there has already caused us to look at [the cosmos] with deeper eyes and appreciate the true vastness of outer space — as well as the meaning of salvation for each and every one of us.”
By at least trying to understand this universe, he adds, we begin to understand a deeper level of ourselves.
Global Crisis, Urban Answers
Progress on climate change is pitifully slow. Can cities succeed where national governments have failed?
By KEVIN SPURGAITIS
Originally published in the UC Observer, July 2012
Once teeming with garbage, diesel transports and tenements burning low-grade “dirty” oil, New York City has undergone a contemporary restyling. To start with, thousands of pedestrians each day traverse the aerial oasis known as the High Line, a 1.6-kilometre section of the former New York Central Railroad above the lower west side of Manhattan. The stretch of greenway, lined with wildflowers and other plant life, bends through aging architecture before giving way to views of a midtown skyline and the Hudson River.
In recent years, New York City has also set a 30 percent carbon reduction goal and adopted the revolutionary PlaNYC, which will “promote solar and wind development within the five boroughs, expand the city’s hybrid taxi fleet and drastically reduce private vehicle use through tolls and reducing traffic lanes.” In the summer of 2009, the city announced the Empire State Building would reduce its energy use by 38 percent by 2013 — a retrofitting model for skyscrapers around the world. Cities are “innovative and nimble,” New York City Mayor Michael Bloomberg proclaimed to the press in May 2011. “[They] can often move quickly and boldly in implementing environmentally and financially viable solutions.”
Often regarded as ghastly imaginings of concrete and steel, megacities have emerged from the 20th century to become brighter, conspicuously greener burgs. As part of the C40 Cities Climate Leadership Group — which Bloomberg now chairs — they are providing stewardship on the environment where none has existed before and stepping up where global protocols and treaties have failed.
Created in 2005 by then London mayor Ken Livingstone, C40 is a network of 58 global cities representing nearly 10 percent of the world’s population. They say they’re committed to implementing “meaningful and sustainable” climate-related actions, such as energy efficiency in buildings, mass and non-motorized transit and advanced waste management. In 2006, the organization partnered with the Clinton Climate Initiative, an agency founded by former U.S. president Bill Clinton. “The collective effort is significant,” says C40 spokesperson Michael Marinello. Climate change specialist Ian Bruce of the David Suzuki Foundation agrees. “Quite simply, the effort to reduce greenhouse gas emissions and adapt to climate change will be won or lost in cities.”
And there is much to lose. The International Energy Agency showed global carbon dioxide emissions in 2010 to be the highest in history. Its data put the world on the trajectory toward at least three degrees of warming by the end of the century, and possibly as much as four degrees.
Yet there’s a phrase heard time and time again in any discussion of global climate policy: lack of national leadership. The Kyoto Protocol, adopted 15 years ago by the United Nations Framework Convention on Climate Change, committed industrialized nations to reducing their greenhouse gas emissions to below 1990 levels. As of September 2011, 191 states had signed on to the protocol, but an all-important United States refused to ratify it. Following the failed climate change talks in Durban, South Africa, last December, Canada made an environmental about-face, formally withdrawing from Kyoto altogether. Environment Minister Peter Kent pointed out to the press that meeting Canada’s target would have been the equivalent of “removing every car, truck, ATV, tractor, ambulance, police car and vehicle of every kind from Canadian roads.”
The lack of an international consensus on climate change has placed more pressure on cities to act. After all, more than 50 percent of the world’s population today lives in cities, according to UN statistics. By 2050, this figure will rise to three-quarters. As the primary centres of economic activity globally, cities consume most of the planet’s energy and account for nearly three-quarters of the world’s greenhouse gas emissions, C40 says. Cities are also the most vulnerable to climate change: 75 percent of urban settlements lie in coastal areas at risk of flooding and incremental sea-level rise. When Jakarta was deluged by floods in 2007, it cost the country US$879 million and resulted in more than 200,000 refugees. In Rio de Janeiro, intense rainfall in 2010 destroyed infrastructure and spread disease throughout flooded areas. New Orleans, which is still dealing with the effects of 2005’s Hurricane Katrina, will also lose significant areas to sea-level rises should climate change continue at its current rate, experts agree.
For many cities, becoming greener means making amends for past sins. As former Toronto mayor and previous C40 chair David Miller explains, “In North America alone, we made a lot of mistakes post-World War II and, particularly, in the 1960s, when we allowed urban planning and transportation to be thought of separately. And we ended up with cities that are built on sprawl models. Toronto was one of them.”
Currently, Toronto is the only Canadian member of C40. When he was in office between 2003 and 2010, Miller unveiled a plan to reduce the city’s greenhouse gas emissions by 30 percent by 2020, and by 80 percent in 2050. He also introduced a multi-million-dollar “clean and beautiful” city initiative, calling on Torontonians to pick up their garbage at home and in neglected public spaces.
“Individual cities can be a very powerful catalyst,” says Miller, who remains an adviser on urban and environmental issues to C40. “There is a broad appetite for local governments to act; they are neither paralyzed by their need to get international consensus or hamstrung to a need for near unanimity. And what happens in these major cities can quickly spread to small and medium-sized ones.”
What was once a top-down approach to climate change has become a grassroots or “bottom-up” one, beginning with mayors, councillors and local entrepreneurs, says Ian Bruce. Cities have a real capacity — and the will — to create solutions and build greener economies, he insists.
According to C40, member cities have collectively taken more than 4,700 climate change actions, while 57 percent have adopted city-wide greenhouse gas reduction targets. London, for example, aims to place 100,000 electric vehicles on its streets before 2020. To improve fuel efficiency, Buenos Aires is building a network of dedicated bus and taxi lanes. Meanwhile, Seoul plans to retrofit 10,000 buildings by 2030. At the same time, a growing number of cities provide recognition and rewards to individuals or departments that meet greenhouse gas goals. Rio de Janeiro, for one, doles out bonuses to public workers who achieve their emission reduction targets.
Of course, cities cannot go it alone forever. What’s being missed is the major role central and federal governments still need to play, argues John Bennett, the executive director of Sierra Club Canada, a grassroots environmental organization. “It’s really unfortunate that we have to depend on property taxpayers to reduce greenhouse gas emissions when simple solutions can be adopted by national governments, making it simpler and more efficient for cities to do their part,” he says. “Without substantial changes to building codes and industrial standards, which are traditionally a regional responsibility, cities will continue to be hampered.”
Miller takes a more optimistic view. Because cities have the clout to do something about climate change, they also have the moral obligation, he says. “Given that national governments have failed us, then the onus has to be on municipalities. And the good news is that cities have been preparing to lead the way on this issue for several years and are ready to assume that privilege.”
Rusty freight tracks — remnants of a begrimed railroad era — are still visible among the grass, trees and flowers along New York City’s High Line. Still, the promenade in the sky, running south from the Penn Station rail yards to the Meatpacking District, serves as an emblem for millions of environmentally conscious New Yorkers. It’s also a tangible example of how cities around the world are bridging their industrial pasts with a greener future.
Can Big Business Save the Planet?
Philanthro-capitalists are putting their money where their morals are, using cash and clout to redefine the meaning of good business
By KEVIN SPURGAITIS
Originally published in the UC Observer, September 2010
Resting comfortably in his den in Omaha, Nebraska, watching the horrors of Hurricane Katrina play out on his TV, renowned investor Warren Buffett first decides to send relief supplies to New Orleans before resolving to fix his broken country. In a high-mountain resort in Maui, he then gathers 16 billionaires and mega-millionaires, a gang of do-gooders that includes currency speculator George Soros, media mogul Ted Turner and comedian Bill Cosby. Their mission: guaranteeing health care and living wages for all, helping to unionize Walmart and creating the People’s Chamber of Commerce. With such wealth and resources at their disposal, they see to it that America is, indeed, reborn.
That’s the wild-eyed premise of Only the Super-Rich Can Save Us!, a 700-page populist fantasy written by consumer activist Ralph Nader — what he describes as “a fictional vision that could become a new reality.” Four hundred of the world’s wealthiest people control more assets than the poorest three billion, Nader notes in the book. If these super-rich stopped wallowing in “leisurely drudgery,” they could change things for the better.
So can big business really save the planet? The track record of corporate capitalism is hardly squeaky clean. Think of Dow Chemical or R. J. Reynolds Tobacco. But observers like Nader argue big business contains the seeds of profound social change, too. After all, globalization has helped spread democracy, increased wealth and education levels, and diversified local economies, according to New York Times columnist Thomas Friedman, one of the pre-eminent voices on globalization. What’s more, visionary CEOs say they are now instilling their companies with scruples and a sense of altruism.
Corporate social responsibility, or CSR, is fast becoming a part of everyday business. It has led companies to reform their organizational practices, to give generously to good causes and to form partnerships with non-profit groups concerned with the environment and public welfare. Critics, however, argue that corporations aren’t actually seeking to better the planet; they’re merely trying to win the public’s trust with a multibillion-dollar public relations effort. CSR skeptics also wonder whether big businesses will still be big-hearted during tough economic times — and if they can ever be as efficient as NGOs and various levels of government.
Over the past two decades, CSR has blossomed as an idea, if not a practical program. Public outcry likely had something to do with it. When the media exposed sweatshop conditions at some of Nike’s Asian factories during the 1990s, concerned consumers boycotted the sportswear company. In 1995, Greenpeace protesters mobilized against Shell Oil after the company announced its plans to dispose of an old oil rig, the Brent Spar, by sinking it in the North Sea. Pharmaceutical companies, too, were forced to respond to the HIV-AIDS pandemic in Africa.
“Government, activists, and the media have become adept at holding companies to account for the social consequences of their activities,” wrote CSR experts Michael Porter and Mark Kramer in the December 2006 Harvard Business Review. “As a result, CSR has emerged as an inescapable priority for business leaders in every country.”
When top executives begin to realize the impact of their choices on their surroundings, “the guilt is enormous,” according to Helen-Jane Nelson, director of Cecara Consulting Limited in the United Kingdom. As she told EnlightenNext magazine in 2005, “We’re at a point where leaders are beginning to recognize that their businesses are not sustainable, that the whole way that they have been doing business — the pursuit of continual growth — is not sustainable. The planet cannot tolerate it.”
The epitome of corporate altruism is Bill Gates. The tech tycoon, who with an estimated US$53 billion ranked second in Forbes magazine’s 2010 list of the world’s richest people, certainly doesn’t resemble a spandex-suited superhero. In fact, he looks more like a mild-mannered, behind-the-desk alter ego. But Gates, the founder and former CEO of Microsoft, is one of the world’s biggest philanthropists. This past decade, the Bill and Melinda Gates Foundation set out to enhance health care and reduce extreme poverty globally. To date, the couple has given more than US$28 billion of their own money to the foundation. Together with investor Warren Buffett, they’ve also launched the Giving Pledge, asking hundreds of billionaire Americans to give away at least half of their wealth to charity during their lifetime or after their death. More than 30 U.S. billionaires, including Ted Turner, have since made the pledge.
At the 2008 World Economic Forum in Switzerland, Bill Gates advocated a “creative capitalism” in which big corporations integrate doing good into their way of doing business. He noted that “capitalism harnesses self-interest in helpful and sustainable ways, but only on behalf of those who can pay.” Creative capitalism would extend the benefits of a free-market system to the world’s poor.
One company that has taken up the CSR banner is Coca-Cola. Its production plants are working with civil society and governments to implement a source-water protection plan by 2013. In partnership with the World Wildlife Fund, Coca-Cola has also started promoting sustainable agricultural practices and the conservation of the world’s most important freshwater river basins.
Says WWF Canada president and CEO Gerald Butts, “Coke has an enormous footprint all over the world and not just within their own operations. But the decisions they make on relatively arcane subjects, like procurement policy, have a big impact on ecosystems all over the world. For example, they’re one of the world’s largest purchasers of sugar cane and citrus fruits, and if they decide that they’re only going to buy sugar and citrus fruits produced in a responsible way, it’s going to benefit nature greatly.”
The principal goal of WWF’s partnership with Coca-Cola, however, is helping the soft-drink company reduce its own water consumption and carbon emissions. “If you want to change the world for the better,” Butts says, “you’ve got to deal with the types of activities that have made it for the worse. And when organizations like Coca-Cola are willing to make really substantive changes in their operations in order to make that happen, I think it’s almost a moral responsibility to guide them along that process.”
In the future, Butts adds, the WWF will work with more companies willing to overhaul their practices. “These partnerships are really important because we’ve had a long history of people in business and the environmental movement shouting at each other across a high wall, and not much has been accomplished through that approach. It’s time to take a different one, even one that’s risky for our own brand.”
Coca-Cola remains under scrutiny from watchdog organizations that accuse it of paying lip service to good corporate citizenship. Considering it bills itself as a “hydration” company, Coca-Cola certainly has an “insatiable thirst for water,” says Amit Srivastava, co-ordinator of the India Resource Center, which supports movements against corporate globalization. According to the centre, Coca-Cola used an estimated 290-billion litres of water in 2006 — enough to meet the entire world’s drinking water needs for 10 days. But until recently, the company converted as much as two-thirds of the freshwater it used into waste water.
In India, where 70 percent of the population derives a living from the land, many rural communities do not have ready access to water due to the control of local water resources by Coca-Cola and other companies. “Such an abusive relationship with water is downright criminal,” Srivastava says. He dismisses Coca-Cola’s CSR initiatives as “a frantic effort to repair its increasingly blemished image.”
Corporate-caused disasters can also raise doubts about a company’s professed commitment to social responsibility. This past spring and summer, after a blast aboard the Deepwater Horizon rig, millions of litres of oil poured into the Gulf of Mexico, soiling nearly 200 kilometres of coastline and threatening some of the United States’ richest ecosystems. BP, formerly known as British Petroleum, was the principal developer of the oil field where the rig was operating.
Just a decade ago, BP began marketing itself as “Beyond Petroleum.” But it didn’t take long for the United States Occupational Safety and Health Administration to fine the oil giant US$21 million for safety violations leading to a March 2005 explosion at a Texas City refinery that killed 15 people and injured 170. The following year, a BP pipeline leaked nearly 900,000 litres of oil into Alaska’s Prudhoe Bay — the worst onshore oil spill in the state’s history. According to a congressional investigation, the spill was caused by negligence and cost-cutting.
“BP is an amazing example of hypocrisy,” says Philip Mattera, director of the Corporate Research Project, a national resource centre in Washington, D.C., that promotes corporate and government accountability. “Here is a company that really prided itself on being socially responsible,” he observes, but the evidence now coming out reveals a “culture of recklessness” behind its operations.
While Mattera acknowledges some claims of social entrepreneurship may be sincere, he contends that many business leaders are only jumping on the CSR bandwagon to counteract the increasing cynicism people have about large corporations. “When a company spends more on advertising its environmental friendliness than on environmental actions, that’s ‘greenwash,’ the phenomenon where corporations preserve and expand their markets by posing as friends of the Earth. It’s completely cosmetic,” he says.
As “philanthro-capitalism” continues to boom, critics warn that the whims of the free market can’t be allowed to displace a vibrant public sphere. Safeguarding the environment and improving public welfare are the distinct roles of NGOs and the public sector, Srivastava argues. While social movements have years of experience in these areas, multinationals are now moving in without knowing “the ABCs” of collective reform. You can’t buy social change, he says.
Srivastava continues, “Whether we’re talking about the Bill and Melinda Gates Foundation or Coca-Cola, they have this whole market approach to solving problems.” But the market’s mood is always changing. Private enterprises, he insists, won’t be present during economically depressed times or when they’re forced out of business altogether. For others, he says, CSR may be a “passing fancy.”
Businesses aren’t charities, observes Harvard professor Michael Porter. At the same time, he rejects the idea that corporate growth comes at the expense of social welfare, or vice versa. Business and society are “interdependent,” he argues, and a company’s social and business agendas should go hand in hand. In a May edition of Business Week, he encourages companies to take a strategic approach to CSR and change their practices “in ways that enhance competitiveness while simultaneously advancing economic and social conditions in the communities” where they operate. By forging mutually beneficial relationships at the local level, big business will regain its legitimacy and “give purpose to capitalism.”
In Nader’s Only the Super-Rich Can Save Us!, do-gooder billionaire Warren Buffett isn’t on a messianic mission. But he and his fellow billionaires awaken to their responsibility to help build “a great and caring society.” Of course, whether business leaders can achieve in real life what Nader touts in fiction is another story.
In making machines that think like humans, are we creating an ethical monster?
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, February 2011
“A robot may not injure a human being or, through inaction, allow a human being to come to harm. It must obey orders given it by human beings except where such orders would conflict with the First Law. Thirdly, it must protect its own existence as long as such protection does not conflict with the First or Second Law.”
These are the famous Three Laws of Robotics written by Isaac Asimov in his 1942 short story, Runaround, which was later popularized in his collection of science fiction, I, Robot (1950). The Russian-born author speculated that humans would one day have to give intelligent machines fundamental rules in order to protect themselves from their creations. Call it a list of moral imperatives for artificial intelligence (A.I.) not unlike the Ten Commandments laid bare in the Book of Exodus.
Yes, science fiction has long portrayed machines capable of thinking and acting for themselves. But it’s quickly becoming a reality. After all, computer speeds are doubling every few months, and more powerful technologies loom on the horizon. There’s now a prototype of robots capable of reasoning, developing emotions and improvising — that are expected to support the fields of exploration, public health and even the arts. Although initially intended for good use, advanced systems have military applications, too — designed to select enemy targets on their own volition.
Like genetic research, A.I. has been the subject of serious debate among technologists and philosophers — not just Luddites and paranoid theorists. In the face of it, they are musing about this next breakthrough in human history while asking hard ethical questions of ourselves. Most of all: is society changing too fast, too quickly? Do our moral values allow us to recreate human beings? Are we on the verge of trumping ourselves, dooming our species in the process?
Human intelligence is best defined as the ability of an individual to adapt their behavior to new circumstances. It is not a single ability, of course; rather a medley of learning, problem solving and the understanding of language. The notion of thinking machines first appeared in Greek myths. Hephaestus, the god of technology and fire, was said to have forged living beings out of metal. The “golden servants,” described in Homer’s Illiad, were not just mindless automatons performing menial tasks at Mount Olympus feasts. They were both intelligent and vocal, and meant to do Hephaestus’ bidding.
But it was only in 1956 when John McCarthy coined the term, “artificial intelligence.” The computer scientist argued that computers can reason like humans — and his work to see that happen strengthened the development of A.I. The first glimpse of that advanced machine intelligence was in the spring of 1997, when IBM’s Deep Blue vanquished the world’s greatest living chess player, Russian Gary Kasparov. Reportedly, the computer showed higher intellectual processes characteristic of humans, such as the ability to reason and learn from past experience.
Even today’s personal computer is more complex than the electronic “brain” needed to land the Apollo 11 astronauts on the moon. And the world’s most powerful supercomputer processors are expected to soon shrink to the size of a sugar cube, according to IBM scientists. It’s referred to as Moore’s Law, the observation by Intel founder Gordon Moore, which states that computer processing power doubles every 18 months. This in mind, something called quantum computing — though poorly understood at present — promises to push A.I. further beyond the limits of conventional computers this decade.
“The ‘singularity’ is near,” award-winning technologist Ray Kurzweil wrote in his 2005 book of the same name. That’s when machine intelligence starts the path of becoming many trillion times greater than human intelligence — in ways we can scarcely even contemplate today. Singularitarians believe it could happen gradually or quickly, with benevolent or malicious intent. A kind of apostle of singularity, Kurzweil writes that once we pass this milestone, “the destinies of computers and of humankind will be indistinguishable.”
There are many benefits to A.I., researchers say. Robotics has made it possible to explore those parts of the world — and, indeed, those of the universe — human beings cannot see for themselves. And A.I. is positioned to support the evolving field of medicine. In August, QMI Agency reported that the first prototype of robots capable of developing emotions was finalized by British researchers. The system is capable of expressing happiness and anger — excitement and fear — and will show signs of distress if it doesn’t receive comfort from its creators. Scientists at the University of Hertforshire said that such robots will one day be used in a hospital setting.
Professional musicians could soon choose to perform with machines, too. In November, a robot called Shimon was showcased at the USA Science and Engineering festival in Washington DC, according to The New Scientist. Created by a team at Georgia Institute of Technology, the shiny, aluminum-steel robot was designed to play the marimba with fellow musicians and, in the future, is expected to even improvise with them.
Of course, with every technological step forward comes the fear that artificial beings will one day become the fittest. Such innovations are a source of great fear, loathing, and the grinding of teeth in Hollywood movies. They’re exaggerated in the form of evil cyborgs, super-computers — and a disaster for humankind.
In the classic film 2001: A Space Odyssey, based on a novel by Arthur C. Clarke, the HAL-9000 commandeers the spaceship Discovery to the horror of its crew The system grows increasingly erratic— some say psychotic. The human astronauts, in a desperate go at survival, are then forced to outsmart HAL and rewire its circuitry.
Continuing the tradition of portraying computers as technological nightmares, other sci-fi blockbusters have pondered different outcomes of machine intelligence: wide-scale devastation due to computer malfunctioning, mass subjugation and ensuing civil conflicts.
Imagine that Judgment Day has come and gone, completely levelling modern civilization. An army of androids roams the scorched landscape, as part of a collective of artificially intelligent, computer-controlled machines hell-bent on the extermination of the human race. Responding to a small group of freedom fighters, they then deploy an unstoppable cyborg assassin, who is destined to travel back in time to kill the matriarch of the resistance. That’s the wild-eyed premise of the 2009 dystopian film, Terminator Salvation, the fourth in a series. In the late 1990s Matrix trilogy, machines similarly triumph over the human race, modifying themselves to get smarter— and with their new intelligence, figuring out how to make themselves smarter still. Consequentially, humans are weeded out of the evolutionary tree, like the woolly mammoth before them.
The idea of a robot Armageddon entertains most people. But it worries computer scientist and mathematician Vernor Vinge, a pioneer in A.I. The retired San Diego State University professor is best known for his 1993 manifesto, Coming Technological Singularity, in which he argues that exponential growth in technology would change our world more drastically than any of our technology previously.
That same year, at a NASA-sponsored symposium in Cleveland, computer scientist and mathematician Vernor Vinge explained a scenario in a half-troubled, half-euphoric tone. “Within 30 years, we will have the technological means to create super-human intelligence,” he declared. “Shortly after, the human era will be ended.”
“Might an A.I. system be able to bootstrap itself to such a higher and higher level intelligence?” he still asks today. “Yes. In fact, this is one reason why I think super-human intelligence would be an almost immediate consequence of achieving human levels of intelligence with A.I.”
In September, the QMI Agency reported that researchers at the Italian Institute of Technology developed an algorithm allowing a humanoid robot, iCub, to teach itself archery. Dressed in a dollar-store feathered headdress and armed with a toy bow and arrow, the iCub is able to adjust its trajectory after every shot, eventually finding its bull’s-eye. The archery project was proudly presented at the Humanoids 2010 conference in Nashville, Tenn. in December.
The automation of weapons systems is a growing military trend, with the U.S. Army aiming to convert 30 per cent of its ground vehicles by 2015. Following suit, the British military last summer unveiled an aircraft designed to use A.I. The Taranis prototype, named after the Celtic god of thunder, is a stealthy, jet-powered weapon system that is completely autonomous. Unlike most other unmanned planned, which are controlled by humans on the ground and fly in a limited area in support of ground troops, Taranis could fly itself halfway around the world and select enemy targets on its own. “It could then carry out intelligence, surveillance . . . and strike with precision weapons,” Squadron Leader Bruno Wood, the Ministry of Defence spokesman for the Taranis project, proudly told the Globe and Mail. Taranis took four years to build at a cost of £143-million. Its maiden flight is expected to take place in 2011.
In July, the South Korean Army also deployed a set of armed-to-kill sentry robots to a guard post on the southern side of the Demilitarized Zone, a legacy of the Korean War more than a half-century ago that separates the isolated, totalitarian North from the westernized, industrial South. The robots, developed by a consortium of South Korean firms led by Samsung Techwin Co., use heat and motion detectors to sense possible threats and can fire 40-mm automatic grenade launchers at targets, according to the South Korean Yonhap News Agency.
Perhaps in a bit of prophesying, the South Korean government in 2007 asked a team of experts to draw up a Robot Ethics Charter. It attempts to ensure human control over robots, protect data acquired by robots and prevent illegal use of the technology. In a press release at the time, Park Hye-Young, of the country’s Ministry of Information and Communication’s robot team, said that these issues will need to be considered as A.I. becomes an increasingly integral part of our lives.
Even if the production of A.I. wasn’t motivated by the wish to “wage war more successfully anyway,” no autonomous robots or A.I. systems could ever the requisite skills to discriminate between combatants and innocents, says John Leslie, a professor of philosophy at the University of Victoria and fellow of the Royal Society of Canada.
“In fact, being attacked, defeated and perhaps entirely replaced by computerized monsters is clearly a possibility — and a very unpleasant one,” Leslie says. “While it’s wrong to think that humans are fine the way they are, it is equally wrong to think that the presence of artificial intelligence will inevitably make humans better. Such systems could be at the foundations of a society whose tyranny went far beyond that of George Orwell’s 1984.”
Leslie has gone as far as predicting the ways in which super-clever machines might cause the extinction of humankind. He muses that their cybernetic brains could be linked to tanks, submarines or other robots made to look as much as possible like people. They may argue to themselves that they are superior to the human race. They might eventually be put in charge of managing resources and decide that the most efficient course of action is for humans to be removed.
“If very clever machines are developed,” Leslie adds, “it seems inevitable that many people would want to be, to some extent, merged with them. This ‘transhumanism,’ for instance, would be as simple as implanting sufficiently small A.I. inside human heads.”
Naysayers, however, claim that such A.I. is not only doubtful but an unlikelihood. They include John Searle, a philosopher who teaches consciousness at the University of California. He argues that computer thinking is a simulation of one aspect of human thinking; not an emulation of it.
“People don’t know what they mean by ‘intelligence;’ it’s an ambiguous term.” Searle says. “If you’re talking about the ability to perform calculations, then for ten dollars, you can buy a pocket calculator that will out-perform any mathematician who ever lived. So what? That’s like saying a sledgehammer will drive a nail faster than a human thumb.”
He describes a room in which a non-Chinese-speaking person receives input through a slot in the form of written Chinese characters. By their side: a rule book written in the language they understand, informing them which Chinese characters they should arrange on another sheet to pass back out through the slot in response. Following these rules, the person would be able answer questions correctly in Chinese without having the faintest understanding of the language.
Searle’s famous “Chinese Room” analogy is designed to show the limits of mechanical ingenuity compared with the varied complexity of human intelligence. It’s also meant to show the boundaries of the famous Turing Test, devised in the 1950s by English mathematician Alan Turing. His basic argument was that if a machine could give answers to a problem indistinguishable from those given by a person — “fooling the observer into thinking it was human” — it could then be said to be thinking.
“At the moment, there’s no such thing as a commercially made conscious computer,” Searle points out. “Until you can design robots with consciousness then you don’t have anything remotely similar to human intelligence. And secondly, without consciousness, you don’t have that central feature of autonomy. The existing computers can only do what you tell them to do.”
He continues: “So I don’t have to worry that my computers are going to get up in the middle of the night and take over my home or office. . . . And if they happen to get in my way, I’ll simply pull the plug.”
Such scenarios don’t alarm philosopher James Mensch either. “The human brain does not work according to well-defined rules, so a machine cannot be devised to function as an artificial brain,” says Mensch, a professor at St. Francis Xavier University. “Also, in order for computers to have complex thoughts — and even emotions — they would have to have our evolutionary, biological inheritance.”
In his 2006 paper, Artificial Intelligence and the Phenomenology of Flesh, he argues that there is “little point in trying to make a ‘thinking machine’ more human by dressing it up in … artificial flesh.”
For more than 50 years, intelligence has been defined in terms of the algorithms that both men and machines can perform, according to Mensch. “I would like to raise some doubts about this paradigm in artificial intelligence research. Intelligence, I believe, does not just involve the working of algorithms. It is founded on flesh’s ability to move itself, to feel itself, and to engage in the body projects that accompanied our learning a language.”
Nevertheless, anticipating a potential menace, technologists are busy fleshing out the concept of “Friendly A.I.” Among them are researchers from the San Francisco-based Singularity Institute for Artificial Intelligence, a non–profit think tank dedicated to the advancement of beneficial technology. It’s strategically located just miles from Northern California’s Silicon Valley — home to some of the world’s largest high-tech firms, including Apple and Intel.
“We’re linking the development of Friendly A.I. to the common concern of humanity,” says Michael Anissimov, media director for the Singularity Institute, which is seeking “the ‘right’ fixed enumeration of ethical rules a moral agent should follow.”
Anissimov notes that A.I. wouldn’t necessarily have those same human instincts of self-moderation and caution. And something like benevolence is a phenomenon that only happened in our brains during an evolutionary period.
So far, the consensus on how to safeguard humanity goes like this: if initial settings are steeped with pacifist values at the very beginning, super-intelligence won’t rewrite itself into a destroyer of humans. Says Anissimov: “We need to specify every bit of code, at least until the A.I. starts writing its own code. . . . This way, it’ll have a moral goal system more similar to Ghandi than Hitler, for instance.”
Anissimov views technology as being useful only to the extent that it boosts the things that we like most about the human spirit.
He continues: “If these artificial intelligences are on our side, I think that we could solve a lot of the problems that humanity faces. And if they aren’t, I think that might be the end of humanity, itself, which is why the advancement of A.I. should be our number one priority right now.”
Technologist Ray Kurzweil, who sits on the board of advisors of the Singularity Institute, has said that the potential benefits make it “impossible to turn our backs on artificial intelligence.” In The Age of Spiritual Machines, published in 1999, he writes that people often go through three stages in examining the impact of future technology; “awe and wonderment; then a sense of dread over a new set of grave dangers that accompany these new technologies; and finally, the realization that the only responsible path is to realize (A.I.’s) promise while managing its peril.”
“Singularity,” Kurzweil argued, “is part of the destiny of evolution to continue to progress ever faster, and to grow the power of intelligence exponentially. . . . To contemplate stopping that — to think human beings are fine the way they are — is a misplaced fond remembrance of what human beings used to be.”
Isaac Asimov once boasted that science fiction writers can “foresee the inevitable.” “It is change, continuing change, that is the dominant factor in society today,” he wrote in the 1978 The Encyclopedia of Science Fiction. “But no sensible decision can be made any longer without taking into account not only the world as it is, but the world as it will be.”
In his 1985 novel, Robots and Empire, Asimov was careful to add one more edict to his list of commandments for machines: the Zeroth Law of Robotics. It states explicitly and poetically that “a robot may not injure humanity, or, through inaction, allow humanity — as a whole — to ever come to harm.”
The question remains, however, whether those values are adequately developed within humankind to ensure that an intelligence spawned from ours will abide.
Aid Under Fire
Mounting dangers are forcing humanitarian workers to rethink the way they deliver relief
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, June 2009
When the Sri Lankan military cornered the separatist Tamil Tigers along the country’s northern coast, more than 1,000 civilians — many with amputations or chest wounds — were holed up inside the region’s remaining hospital in Puthukkudiyiruppu. During 16 hours of cluster bombing on and around the facility, more than 50 people were killed — a toll that included patients, their relatives and at least one health aide. Overwhelmed doctors were reduced to handing out gauze and bandages to the seriously wounded — and leaving dead bodies entirely unattended.
It was to be the end of the quarter-century civil war. But the converging hostilities last May also resulted in the bombing death of Red Cross worker Mayuran Sivagurunathan and his mother, and prevented a Red Cross ferry off the coast from delivering food aid and evacuating the wounded, according to the International Committee of the Red Cross (ICRC), the non-partisan organization that assists victims of war and armed violence, as well as its participants. As one Red Cross employee expressed at the time, it was an “unimaginable humanitarian catastrophe.”
As global emergencies mount at head-spinning speed, aid groups are increasingly caught in the crossfire. Last year was the most dangerous year on record for aid workers, and 2009 isn’t looking much better. According to the Overseas Development Institute, a British think tank on international humanitarian issues, 260 humanitarian aid workers were killed, seriously injured and kidnapped in 2008 — the highest toll this past decade. The number of deaths among aid workers even exceeded that of UN peacekeepers. The reasons for the increase are as varied and complicated as the situations themselves, but it would seem that humanitarian aid just isn’t sacrosanct any more. As a result, relief organizations, some faith-based, are rethinking how they deliver it.
“There’s always a certain amount of danger and a dire risk of being caught in the wrong place at the wrong time,” says Bernard Barrett, spokesperson for the International Committee of the Red Cross. “But in recent years, we’ve seen a sharp increase in the numbers of casualties among our ranks. We continue to emphasize our neutrality. We do not make public pronouncements, pointing the figure at one side or the other. And yet, we’re facing more and more these hostilities.”
It’s now been 150 years since the adoption of the Geneva Conventions — what began as merchant Henry Dunant’s appeal for fallen soldiers in the war-ravaged plain of Normandia, north of Italia. The occasion, however, is marked with barely the raising of a glass. Enshrined to protect the sick, wounded and shipwrecked during wartime, the document evolved in 1949 and again in 1977 to guarantee the protection of humanitarian workers in conflicts. These protections include the right of aid workers to be treated humanely, to be free from violence to life and person, hostage taking, humiliating or degrading treatment, and imprisonment. But events of the last 12 months suggest mounting disregard for the Conventions — and the lives and efforts of aid workers.
In Sudan’s Darfur region alone, 11 aid workers have been killed and 189 abducted in the past 12 months. In March, insurgents kidnapped four Médecins Sans Frontières employees — including Canadian nurse Laura Archer — then released them three days later. MSF would not comment on the situation out of respect for the victims and their families. But in a statement after her release, Archer said the following: “. . . I’m thrilled to be home safe, though my main concern is not about myself nor my colleagues but about the people left in Darfur. . . . I hope that we can all put our attention and energy on to the people of the region — on to the beneficiaries — and I hope that the implications from this kidnapping are not affecting the community that we treat.”
Also in March, a Sudanese relief worker with the Canadian-based Fellowship for African Relief (FAR) was killed in the western Darfur town of Kongo Haraza. Adam Khatir, 39, was shot by two gunmen in the courtyard of his home. The bandits wanted a satellite phone belonging to Khatir, who had been working in his home village for the last five years, building up local agriculture through seed donations. That same month, the Sudanese government expelled 13 major aid groups after the International Criminal Court issued an arrest warrant for President Omar Hassan al-Bashir, accused of war crimes and crimes against humanity. The region, meanwhile, continued to be wracked by famine and oppression, as well as large-scale outbreaks of tuberculosis, cholera and malaria.
Last winter, relations between Israel and humanitarian organizations grew tense during that government’s 13-day offensive in the Palestinian-occupied Gaza Strip. With the stated aim of stopping Hamas’ rocket attacks on southern Israel and arms smuggling in Gaza, Israel bombarded bases belonging to the leading Palestinian organization, as well as houses, churches, schools and medical facilities, including the Shaja’ih Family Healthcare Centre, funded by Canadian taxpayers through the Canadian International Development Agency. In all, 13 Israelis and nearly 1,500 Palestinians — including some 900 civilians — were killed during the offensive, according Reuters. Another 5,000 Palestinians were injured. But not all the casualties were combatants and civilians. During the two-week blitz, a Red Cross convoy came under Israeli fire at the Netzarim crossing, which left one driver wounded. CARE International employee Mohammed Ibrahim Samouni, a Palestinian father of six, was also killed while distributing food and medical supplies to hospitals, families and feeding centres. His son was critically injured.
But nowhere have workers’ woes been more frustratingly illustrated than in Iraq, where aid organizations have struggled to gain a meaningful foothold since the US-led invasion of 2003. At the height of the Iraq War, 22 members of a UN aid agency — including UN mission chief Sergio Vieira de Mello — were killed in the bombing of its Baghdad headquarters. After that, the killing and kidnapping of aid workers only worsened, just as they have in Afghanistan. With 72 abducted and at least 23 killed in militant attacks, 2008 was unquestionably the deadliest year for aid agencies in the country since the 2001 U.S.-led invasion that ousted the Taliban. Large and vulnerable swaths of the country — up to 50 percent — is now inaccessible to major humanitarian activities, according to the UN.
One of the biggest dangers facing aid workers is the perception that they’re taking sides. Kevin McCort, CARE Canada’s president and CEO, says, “Assaults on aid workers aren’t exactly random; it’s not about workers being caught up in a given circumstance. . . . Despite of our best efforts to keep our aid impartial and out of power struggles, sometimes warring parties go ahead and define our work by their own politics.”
He continues: “More and more, there’s a willingness by fighting forces to expand their tactics to aid workers. We’re no longer seen as external to the fight. Often times, the best way to take over a piece of land is to drive people out of it, and so, anyone delivering humanitarian assistance and enabling people to stay put is merely obstructing that objective, in some perspectives.”
The Red Cross’s Bernard Barrett says neutrality has long been his organization’s core principle, yet its historical red and white emblem — emblazoned on all T-shirts, tent canopies and vehicles — is too often disregarded. “We invest a lot of time with all the different groups involved in a conflict, whether they be government sources, community organizations, armed forces or even those who may be considered terrorists. We always remind folks of who we are and what we’re doing in order to get security guarantees. . . . But when you’re looking at a given conflict, you’re looking at a situation in which emotions and opinions become polarized. There’s always going to suspicions as to why we’re helping the other guy, and why we’re giving medicine and food to civilians on the other side. It’s frustrating.”
Wariness on the part of some governments also puts aid workers at risk. Gary Kenny, The United Church of Canada’s program co-ordinator for Southern Africa and Emergency Response, says, “Zimbabwe, especially, has been very suspicious of any western intervention or involvement. There’s a conception that NGO members are all spies, trying to undermine African sovereignty. So they watch local aid organizations — those connected to western countries — very carefully. They expel them if they deem it necessary. This is driven not only by one-dimensional or superficial military agendas; it’s born out of post-colonial thinking and an utter sense of desperation. Naturally, [the hostility] in some African countries runs pretty deep.”
Some militaries, including Canada’s, have taken up humanitarian action. On the surface, it’s a laudable effort, but it’s putting aid workers in jeopardy. For example, in Iraq, U.S. soldiers for a time dressed in T-shirts and concealed their weapons in order to distribute food and equipment to local populations. It was a blatant effort to win Iraqi hearts and minds, aid groups say. Exasperating relief workers further, the former U.S. administration went as far as dubbing American NGOs as “force multipliers” for the coalition army — a description that made humanitarian aid appear as an instrument of foreign policy and nothing more.
“(The co-opting of humanitarian aid) has undermined the ability of ours and other humanitarian organizations to address the critical needs of civilian populations,” says John Nduna, the director of Action by Churches Together International, the agency through which United Church does most of its relief work worldwide. In Iraq, ACT has assisted many of the 2.8 million displaced persons, distributed food and hygiene items to thousands of families, and in the most remote and poor areas of the country it has built 25 shelters for highly vulnerable families. “When humanitarian action is used for political or military ends, it only further blurs the lines between military personnel and relief workers. Insurgent groups wanting to strike back at military targets will then strike back at anyone Western-looking. And it’s easier to target an international aid agency; we’re the ones without guns and bombs.”
In light of the increasing risks to relief workers, aid agencies have embarked on a period of self-reflection. There’s no panacea. The situations are as wide-ranging as they are complex. However, one of the solutions, says Nduna, is for the aid sector to come up with new security guidelines and policies for workers. “We’ve had to shift our thinking dramatically in how we prepare our members, so that they can operate safely in hostile environments and continuously provide the assistance that’s so desperately needed. Also, we now exchange information about threats and risks with other organizations more than we ever did before.
While poverty and a lack of opportunity is a problem in war-torn regions, anti-western sentiment remains a major obstacle. The United Church’s Gary Kenny says good public relations is desperately needed moving forward. “You can make some inroads into countries by creating a different impression of the value and need of humanitarian aid. An exceedingly important goal is the employment of local populations at the grassroots level — the basis on which the United Church works. We’re more interested in strengthening the capacity of the people and organizations in which we’re in partnership instead of deploying expatriate personnel.”
Around the world, 96 percent of CARE International’s staff members are from the countries where they work. “It’s about working with local governments, community leaders and religious leaders and being as transparent and accountable as we can,” says McCort. “It’s incumbent on us to demonstrate that we’re not in any country to push an agenda other than ending global poverty.”
Small-time banditry is both a fact of life in many developing countries and a threat that needs to be addressed. Aid groups are taking extra measures to protect themselves: using padlocked gates and surveillance cameras, as well as security staff. Mark Simmons, FAR’s director in Sudan, says showing up in bullet proof flack jackets and helmets — accompanied by military escorts — would only build distance between workers and local populations. For the most part, organizations such FAR are adopting an “invisible” approach, keeping a low profile as they support the work of local partners.
With guarded optimism, foreign aid agencies have quietly redeployed expatriate workers to Iraq following a drop in violence in the country to four-year lows. In an effort stop military forces from co-opting humanitarian aid, many non-governmental organizations are strongly reinforcing their independence by moving their operations away from political and military ones — even toward more rural areas, where they can serve more vulnerable populations in relative peace.
Gone are the days when international aid organizations operated with widely perceived neutrality. But Barrett urges all those who support international aid agencies to keep hoping and to focus on their successes. “In spite of the hijackings and killings of the agencies’ workers, even as the world is pushed to the tipping point, we remain operational,” he says. “We can’t naively think that we’re going to be able to do everything for everyone. We just have to constantly remind ourselves what our specific role is — what we can realistically accomplish. And when in doubt of a particular situation, we have to remember to say ‘no’ rather than put ourselves — and, of course, the long-term mission of our organizations — in danger.”
Prescription for a Pandemic
Scientists, activists and politicians agree that generic drugs can slow or stop the global spread of HIV-AIDS. So why haven’t they been made more accessible?
By KEVIN SPURGAITIS
Originally published in the UC Observer, September 2011
It was the right thing to do: passing a law that would help put affordable medication into the hands of people suffering from HIV-AIDS. Patients would live longer, healthier lives. Drug companies would still profit. But what started as an act of pharmaceutical goodwill has been watered down — if not discreetly shelved and abandoned.
In 2004, the Parliament of Canada responded to the urgent need for anti-AIDS drugs in many developing countries by creating Canada’s Access to Medicines Regime (CAMR). With wide support from political parties and civil society groups, including The United Church of Canada, the government promised access to the latest therapies at significantly reduced prices by encouraging brand-name pharmaceutical firms to allow generic ones to manufacture cheaper versions of their anti-AIDS medications. Described by NGOs as “a gift tightly bound in red tape,” however, the law has been used but once in Canada. In fact, the single generic company involved in the process vowed never to repeat it.
The reason isn’t as complex as the law itself. Brand-name pharmaceutical companies, concerned about patent protection and increased competition at home and abroad, saw to it that their generic counterparts must await approvals for each shipment of medication — a process that takes months if not years. As a result, CAMR continues to come short of its promise and leaves AIDS activists wondering if Canada will ever make universal access to treatments a reality.
“Quite simply, the resources needed to scale up AIDS treatment will have all the more impact if countries can buy the medicines they need at lower prices,” says Richard Elliott, executive director of the Canadian HIV/AIDS Legal Network.
The network, along with a number of Canadian activists and politicians, has been working to fix the flaws of CAMR. Bill C-393, a private member’s bill that would streamline the regime, is currently before Parliament. It outlines a one-licence process, whereby the government would authorize a generic company — right from the beginning — to handle all of its generic drug production. This would do away with separate negotiations and licensing for every single order of medicine by individual countries.
“What we have said to the federal government is that you can’t do things on a case-by-case basis, drug order by drug order, country by country,” Elliott says. “That doesn’t make much sense for the generic producer nor for the developing country that wants to buy.”
Reversing the spread of HIV-AIDS is possible. Mass prescription of anti-retroviral treatments (ARTs) could wipe out the disease by the middle of this century, according to the South African Centre for Epidemiological Modelling and Analysis. It’s part of a growing body of scientists who argue that without an effective vaccine, ARTs offer the best hope of preventing — and even eliminating — AIDS. ARTs, which must be taken daily, dramatically lower the concentration of HIV in a person’s bloodstream and, in addition to preventing the patient from developing AIDS, significantly reduce their ability to transmit the virus to another person.
Of course, no one country has the capacity to meet the global demand for these drugs. Indian generic manufacturers, most notably, have supplied more than 80 percent of donor-funded AIDS medicines to developing countries in the last seven years. But as Elliott points out, intellectual property rights agreements, administered by the World Trade Organization, have curtailed India’s production of second-generation medicines. It’s not clear whether the country can continue supplying generic versions of these newer and improved ARTs.
“We can’t keep viewing India, for example, as the global pharmacy of the poor,” Elliott says. “The picture is changing and will continue to get worse over the coming years.”
To date, the only Canadian company to deliver affordable drugs has been Apotex Inc., Canada’s largest generic pharmaceutical firm, which produces 260 medicines for 115 countries. But it took the corporation four years to make its first — and only — shipment of medicines. In September 2009, it sent a three-in-one AIDS drug, Apo-TriAvir, to Rwanda. In a May 2009 press release, Apotex president Jack Kay reiterated the need to fix CAMR. “The regime has not been successful in attaining its original objectives as declared when the law creating it (the Jean Chrétien Pledge to Africa) was passed,” he said. “We invested millions in the research and development of the product, legal costs in negotiating with the brand companies and made no profits in this process. In its current form, the law is not workable for us and, it appears, it doesn’t work easily for developing countries.”
In the absence of affordable anti-retrovirals, many countries, private donors and charities have heeded the call for change. This past September, Prime Minister Stephen Harper pledged $30 million to combat AIDS and other diseases at a UN anti-poverty summit. Canada promised to give another $540 million toward the same between 2011 and 2013, which represents a 20 percent increase on its commitment of $450 million over the previous three years. The world’s wealthiest countries have to forge “practical, durable solutions,” Harper said, and maintain “a shared sense of responsibility.”
Although increased AIDS funding this past decade has helped many of the nearly 34 million people living with HIV-AIDS around the world, there are still more than nine million — mostly in Africa — who need access to life-saving ARTs and cannot get them, according to Dignitas International, a Toronto-based medical humanitarian organization that treats thousands of AIDS patients in Malawi.
In a June opinion piece published in the Globe and Mail, Dignitas founders James Orbinski and James Fraser, both formerly of Médecins Sans Frontières (MSF), pondered if the world had forfeited victory in the battle with AIDS: “G8 nations committed to ensuring universal access to HIV/AIDS treatment, and their performance on this promise has saved millions of lives. Although laudable, the gains made over the past decade are less than what should have been achieved, and are now threatened by a retreat of these nations from their funding commitments.”
As is the case in other countries with a high prevalence of HIV, Malawi’s shortages of anti-retroviral drugs are partly due to delayed disbursements from the Global Fund to Fight AIDS, Tuberculosis and Malaria, according to Orbinski and Fraser. The international fund was established in 2002 to finance interventions against pandemics. But in these recessionary times, many of the world’s biggest donors have frozen or reduced their contributions to anti-AIDS treatments in particular. This has affected patients in Malawi twofold: Dignitas’s medical team can no longer take on new AIDS patients in its rural clinics, ensuring that only the absolute sickest — and most “immuno-compromised” — continue with their regimen. Secondly, those on treatment must travel up to 40 kilometres to the southern city of Zomba, where they receive a one-month supply of medicine at the central hospital.
Orbinski and Fraser described an environment where patients, distraught and exasperated, blame their nurses and clinicians. “They’re angry at us because we’re at the front line.” For patients aware of anti-retroviral medicine, the scarcity of treatment feels crueler and more inexplicable, the Dignitas founders wrote.
Their call for action is echoed by Rachel Kiddell-Monroe, the president of Universities Allied for Essential Medicines, an international organization working to improve access to medicine in low-income and lower-middle-income countries. With MSF Canada, Kiddell-Monroe also witnessed firsthand the impact of the pandemic in the absence of affordable anti-retrovirals. “I saw how men and women in Rwanda after genocide were left to die because there were no AIDS treatments available to them. Quite simply, the prices of drugs were too high.”
The major difficulty, she says, has been the “incredible power of the pharmaceutical lobby in Canada and its insistence on returning to diversionary arguments.”
The brand-name pharmaceutical industry once labelled CAMR “window dressing.” It argued that in addition to eroding patent protection, low-cost generics could be smuggled back to North America, undercutting the more expensive brand-name drugs. With more competition — and a lesser payday — there are fewer incentives to research and develop new medicines, Canadian companies say.
To make CAMR palatable to the pharmaceutical industry, some members of Parliament made sure that generic companies had to undergo a stringent application process for each shipment. But Kiddell-Monroe says their willingness to appease brand-name pharmaceuticals shows “either a real lack of understanding of international development issues or a wilful disregard for our commitments as Canadians — and as human beings — in favour of protecting an already lucrative drug industry. . . . So the fundamental flaw in the current legislation is that industry profit-seeking trumps the rights of patients.”
A single pill costing 15 cents to make can end up retailing for $1.50, according to Elliott. If GlaxoSmithKline, for example, has a patent on one anti-AIDS drug while Abbott and Pfizer have one on others, those three brand-name competitors won’t get together to produce a cheap, fixed dose that combines their three different drugs. It’s not good for their bottom line.
Says Elliott, “Generic drugs, like Apotex’s three-in-one AIDS pill, are the key, but not just on the pricing issue. Such manufacturers have the ability to produce products that make dosing simpler and therefore increase people’s ability to adhere, especially where infrastructure is limited.”
Canada has long been regarded as a “constructive, compassionate and humanitarian” actor on the global stage, Elliott says. But this image has been tarnished in recent years, partly due to its failed AIDS initiative, as well as the lack of progress toward the 2015 Millennium Development Goals, a set of anti-poverty targets set by UN countries that includes combatting HIV-AIDS.
“It’s a widely shared belief among Canadians that we should make HIV-AIDS medicines available and affordable to developing countries,” Elliott says. “We understand that we have the capacity to help save millions of lives and that we simply can’t wall off the public health problems that arise elsewhere in the world.
“Bill C-393, if passed, will finish what the country started in 2004. It’s a win for patients in the developing world; a win for Canadian generic companies that can supply those medicines; a win for brand-name drug companies that would receive royalties; and a win for Canada’s international reputation — all at no cost to Canadian taxpayers.”
It’s still the right thing to do.
Decoding Our Good Side
For centuries, theologians described empathy as a gift from God. Now neuroscientists suggest it’s simply evolution in action.
By KEVIN SPURGAITIS
Originally published in the UC Observer, November 2012
For theologians and philosophers alike, the essence of morality is the awareness that other people’s needs are as important as your own — if not considerably more. In fact, this social consciousness reveals that, by and large, we’re not purely in it for ourselves. Despite the unseemly behaviour that human beings regularly unleash on each other, we are inherently empathetic creatures.
In recent years, neuroscientists have begun to illuminate this idea, tracing the evolutionary origins of empathy and uncovering the genes that dispose some individuals to senseless violence and others to acts of altruism. They’re offering an explanation for the pathologically selfish Bernie Madoff and the innately virtuous Mother Teresa, as well as the rest of us who fall somewhere in between. To people of faith, such science threatens to reduce empathy to a mere physiological response — far from the mysterious interplay of forces thought to give rise to the human spirit. Still, whether we believe compassion springs from God or brain chemistry, empathy research promises to reshape our understanding of morality in coming years.
According to Charles Darwin’s theory of natural selection, only the fittest of a species reproduce and pass their genes on to another generation. This incentive would seem to encourage competitive, self-interested behaviour at the expense of compassion. Yet surprisingly, empathy — and by extension self-sacrifice — happens all the time in the natural world, as Darwin himself observed. For social animals, “those communities which included the greatest number of the most sympathetic members, would flourish best and rear the greatest number of offspring,” he wrote in The Descent of Man, and Selection in Relation to Sex in 1871.
Throughout human evolution, empathy is the “invisible hand” that inseparably binds us, argues ethical prophet Jeremy Rifkin. In his 2010 book, The Empathic Civilization: The Race to Global Consciousness in a World in Crisis, he describes the history of humanity in terms of ever-expanding empathic borders, from the blood ties of hunters and gatherers to our current age of growing transnational consciousness. “When we say to civilize, we mean to empathize,” he writes.
Today, research is showing how this “invisible hand” is inextricably stitched to our neural patchwork. In other words, we are genetically hard-wired to experience another’s plight as if it were our own. In its simplest expression, when one baby cries in a nursery, others invariably do also. When most people witness someone else’s suffering or read about a murder or assault, their palms perspire and their blood pressure sharply increases.
When this happens, areas of the brain that are more than 100 million years old, such as the limbic system, are actively engaged, according to Frans de Waal, a primatologist at Emory University and the director of the Living Links Center at the Yerkes National Primate Research Center in Atlanta. Empathy begins with “the synchronization of bodies,” he says — the sweaty palms, the rising pulse. We experience it first as a physical response, “not in the higher regions of imagination, or in the ability to consciously reconstruct how we would feel if we were in someone else’s shoes.”
As de Waal points out in his 2009 book, The Age of Empathy: Nature’s Lessons for a Kinder Society, “We aren’t Robinson Crusoes, sitting on separate islands; we’re all interconnected, both bodily and emotionally. . . . Members of the species Homo sapiens are easily swayed in one emotional direction or another by their fellows.”
There is even evidence that empathy is present in highly social mammals, such as dogs, elephants and of course other primates. For example, chimpanzees show consolation: they embrace, kiss and groom others who are distressed. De Waal, who was ranked among Time’s 100 most influential people in 2007, has collected thousands of examples of animal consolations, and found that the comforters are more typically females than males, as it is with human children.
Although genes tell us much about the roots of empathy, they’re not the whole story. De Waal says we are likewise influenced by the environments in which we grow up. Every experience throughout our lives can “modify genetic expression” — activating certain genes or switching others off — which, in turn, can set in motion new behaviours. In this way, “genes and environments intertwine.”
If you ask Paul Zak, the key to empathy lies with a 400-million-year-old neurochemical: a single molecule called oxytocin.
Zak is the founding director of the Claremont Graduate University’s Center for Neuroeconomics Studies in California. In 2004, after searching for a neurochemical basis for empathy, Zak’s laboratory identified the role of oxytocin — what he refers to as the “moral molecule” or the “love hormone” — in the behaviors of unacquainted humans. Oxytocin is the social glue keeping families, communities and societies together, Zak writes in his new book, The Moral Molecule: The Source of Love and Prosperity.
He believes that oxytocin first forged the bond between mothers and their babies. It then became the neurochemical motivator for positive social behaviours: holding the door open for a stranger or picking up something dropped, even if your own hands are full.
Says Zak, “We found that positive social stimuli of many types stimulate the brain to release oxytocin, and when it’s released, the self-other divide melts a bit and we start treating strangers like family.”
He continues, “The existence of a moral molecule shows that we are a better species than sometimes we give ourselves credit for. In a real biological sense, we are one big human family: we have the potential to care about nearly everyone on the planet. . . . As it’s written in Galatians 5:14: ‘You shall love your neighbour as yourself.’”
Zak, a “hopeful Christian” whose mother is a former Catholic nun, confesses to being enthralled by churches — Rome’s St. Peter’s Basilica even brought him to tears. He’s conducted several oxytocin experiments in places of worship and claims that religious rituals cause oxytocin release in about 60 percent of participants. Such rites endure because they “bring us closer to others — and perhaps closer to our loving selves,” he says.
Zak adds that the “highly empathic personalities” of Mahatma Gandhi and Mother Teresa likely released more oxytocin than most. “These moral exemplars had crises of faith and purpose like most of us do, but for much of their lives, they loved even those whom others thought to be unlovable.”
In another series of studies at Zak’s laboratory, when oxytocin was administered by nasal spray, it reportedly heightened trust and co-operative behaviour within social groups. The upshot? Researchers are convinced they will soon be able to cultivate empathy in human beings pharmacologically.
“To understand how something works is also to begin to see ways to modify and even control it,” says Guy Kahane, deputy director of the Oxford Centre for Neuroethics and the Oxford Uehiro Centre for Practical Ethics. “We can try to understand how the heart works from a purely theoretical perspective, but this knowledge would also be of immense use to doctors trying to treat heart disease. In the same way, our growing — though still rudimentary — understanding of the way our minds work will inevitably suggest ways to influence our minds or even directly tinker with our brains.”
Kahane points to sex offenders taking anti-androgen drugs to curb their libido and students using Ritalin to focus in school. In like manner, he says, we will eventually “influence our emotions, attitudes and behaviour by making ourselves more motivated to actually act on our moral principles.”
The idea of a morality pill calls to mind A Clockwork Orange, the Anthony Burgess novella adapted to film by Stanley Kubrick. The story sees an unrepentant psychopath, Alex, programmed by the state to respond with nausea to violence and sex. What makes us human, the narrative suggests, is our freedom to choose both good and evil, and for society to force individuals into righteousness is as sadistic as the actions of Alex himself.
Kahane acknowledges the story’s Christian theme but takes exception to the message: “Many believe that if you’re coerced to be good, then you’re not really good, and the act of forcing you in this way might itself be deeply immoral. But we punish people all the time. We coerce them. Secondly, the psychopath in A Clockwork Orange freely chooses to undergo treatment. . . . So it’s hard to see how [drug-induced moral improvement] will reduce our freedom.”
Still, the ability to choose to resist apathy is something precious, Rev. Ambury Stuart argues. “[Empathy] is not a broken clock that scientists should simply fix.” Stuart, of Toronto, was a meteorology scientist for more than 30 years before being ordained as a United Church minister in 2004. “Free will is the great gift of our consciousness, although also a source of great suffering,” he says. “If we didn’t possess free will, we simply wouldn’t be capable of grace. . . . If we limit ourselves by manipulating body chemistry, we become limited in a way and certainly far less human.”
He agrees with another scientist-turned-clergyperson, Rev. John Polkinghorne. The English theoretical physicist and Anglican priest has argued that “a world with a possibility of sinful people is better than one with perfectly programmed machines.” While scientists are keen to study and tinker with almost everything, the human spirit is not something they can ever measure empirically and eventually manipulate, Stuart says. It’s “purely a concept and principle of faith.”
He continues, “In the beginning of the modern era, it was believed that science would answer everything about the fundamental processes of life. That was the consensus. But the 20th century proved to be the great implosion of that hypothesis. It even brought us atomic weapons and pollution, among other things. . . . Science definitely has limitations; eventually its practitioners hit a proverbial wall.”
Stuart echoes the sentiments of Albert Einstein, who cautioned that we should be careful “not to overestimate science and scientific methods when it is a question of human problems.” The famed physicist also weighed in on empathy, noting in 1954 that “our task must be to free ourselves . . . by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty.”
While they may differ on the means, both scientists and the faithful can agree that it’s high time for humanity to transition from the kind of me-first culture that provoked the global financial crisis and its aftermath. Perhaps if we can harness our innate empathic sensibility and harmonize the planet’s relationships, as Jeremy Rifkin proposes in The Empathic Civilization, we can move beyond our “detached, self-interested and utilitarian” mindset and into an entirely new era.
The Science, Spirituality of Insomnia
For some, insomnia is a recurring nightmare. Others find it gives them a chance to reach deep into their souls.
By KEVIN SPURGAITIS
Originally published in the UC Observer, April 2008
One dreadful night, after being awake for more than 48 hours, I saw a peppershaker do a jig atop my kitchen table. Its moves were in perfect 2/4 time, set to some classic Irish reel unbeknownst to me. Bemused, I inspected the accoutrement more closely only to find it was just a humorous hoax of my senses. Insomnia is sometimes funny like that.
I often go to bed with drooping eyelids but invariably end up gawking at the ceiling. It’s as if my mind and body continuously war with each other while the rest of the world, maddeningly, slumbers peacefully. During this nightly Armageddon, shadows are overcast and streetlights buzz outside my bedroom window. Then the house speaks to me: pipes clank, water runs, walls shift in the dark. But then again, my brain is on the boil with ideas. They come in a sudden, gushing stream as if my head is being invaded by thoughts that aren’t uniquely mine. Maybe it’s the Higher Power –– I’m not sure how I’m supposed to know. What I do feel is that something bigger than me is goading me to nurture each brainchild.
Since the turn of the 20th century, we’ve cut back our average sleep time from 10 to seven hours. According to Statistics Canada, one in every seven Canadians over the age of 15 — 3.3 million of us — has trouble going to sleep or staying asleep. Data from the recent Canadian Community Health Survey revealed that life stress and the general hubbub of modern society mostly kept Canadians up at night. Nearly one-quarter (23 per cent) of people who described most of their days as being either “quite a bit” or “extremely” stressful reported insomnia. There are lifestyle, socio-economic, physical and mental health factors too. Experiencing insomnia the most are middle-aged people (ages 45 to 64) and individuals who are morbidly obese, which can trigger sleep apneas — the temporary cessation of breathing, especially during sleep.
Sure, insomnia might seem counterintuitive. Conventional wisdom insists that to perform at our best, we need a good night’s rest. The ancient Greeks even extolled sleep as a “sacred salve releasing humankind from (everyday) cares and compensating for its daytime proclivities.” But some of the best ideas have also been known to come out of sleep deprivation. It’s said that insomniacs can gain a better perspective and develop a strong sense of enlightenment. There’s also something about the night: the coolness, the mystery, the peacefulness. For worse or better, mystics, artists and deep thinkers alike frequently burn the midnight oil.
There is a whole history of sleep deprivation being used by religious types as a form of asceticism or to heighten spiritual awareness. The Indian mystic Sri Aurobindo claimed to have entirely overcome the need for sleep. He saw sleep as a sluggish, lower kind of consciousness that could be conquered through intense meditation. Similarly, the desert monks of the early Christian Church were known to deny themselves slumber. Coffee, too, owes much of its spread in popularity through its use by Muslim mystics in all-night devotions.
Ret. Rev. Gailand MacQueen, of St. Peters United Church in Sudbury, Ont., often awakes at 4 a.m., usually as a result of a dream or a worry. “ . . . But being awake for an hour or two in the middle of the night really isn’t a burden of any kind; it’s sort of a little treasure,” says MacQueen, who teaches psychology of religion at Laurentian University, and is the author of The Spirituality of Mazes and Labyrinths. “Sleeplessness simply allows you to get into another world that can’t be entered during the day.”
Macqueen also values the solitude that insomnia affords. It has long been a favored topic of poets and spiritual writers. The benefits of solitude and being alone come easily to mind in Henry David Thoreau’s work Walden or in the spiritual writings of desert fathers. In each, separating oneself from others in order to be reunited with the natural or divine appears both life-giving and rejuvenating. According to MacQueen, solitude at night can mean having time to read a book uninterrupted — or to compose one, to create a work of art, to reflect on life’s journey and mystery, and to ponder questions he cannot find time or space to address elsewhere. He says that those who spend time in solitude return to the world better persons. They are renewed and bring to their lives a heightened sense of balance and focus.
Investigations into insomnia’s more positive effects are giving scientists a new understanding of sleep deprivation. Interestingly, they agree it can lead to tireless stamina, incredible creativity, heightened awareness — and, ironically, a cheerful mood. During this psychosomatic arousal, there’s a shift in brain region activity. Parietal lobes, which play a role in one’s sense of self and spatial processing, reduce their movements. With less of a sense of self, a person could feel like they are floating, feel oneness with their surroundings or feel the presence of a higher power. The extreme of sleeplessness: vivid hallucinations may occur after 48 hours or less. It may explain many Virgin Mary sightings!
However, on a purely physiological level, humans on average still require at least eight hours of sleep a night, according to researchers. It’s genetically determined. During this time, hormones are secreted, healing muscles and strengthening the immune system. The body synthesizes proteins faster in the retina and cerebral cortex — the newest part of the brain in evolutionary terms — enhancing restoration and growth.
“In ancient times, people used to think sleep was the sister of death. But now we know the very opposite is true,” psychiatrist and sleep doctor Dr. John Carlile tells me at the Sleep Medicine Laboratory in Kingston, Ont. “It’s a very active, chemical time — a time for the renewal of our bodies.” Having practised psychiatry for more than 20 years in South Africa and Canada, Dr. Carlile now focuses entirely on the science of sleep and lectures at various universities.
Sleep deprivation, he says, impairs the functioning of the cerebral cortex. Keeping people sleepy is a great way to brainwash and manipulate. No wonder cult leaders and political interrogators allegedly use sleep deprivation to weaken subjects into compliance. Studies well document the negative effects of it although scientists have found that not everyone is affected to the same degree. Generally, without ample sleep, one can experience decreased vigilance; increased fatigue; impaired memory, speech and decision-making; not to mention irritability, anxiety and paranoia. In severe cases, over time, one could get delirium, according to Carlile.
“Simply put, if you don’t get your sleep, you’re going to do some serious harm to yourself in the long-term. You’re going to cause problems with your coping mechanisms in your brain and shorten your life a little bit. Deconstructing the mind in that way, in order to reached clouded states of consciousness, is therefore dangerous.”
There are exceptions, of course. Well known among sleep researchers is the record-breaking stunt by Randy Gardner, a 17-year-old high school student in San Diego, California. In 1964, Gardner stayed awake for 264 hours (eleven days even), breaking the previous record of 260 hours held by Tom Rounds of Honolulu. Lt. Cmdr. John J. Ross of the US Navy Medical Neuropsychiatric Research Unit monitored Gardner’s health and later published an account of this event — the scientifically documented record for the longest period of time a human being has intentionally gone without sleep without stimulants of any kind. On his final day without sleep, Gardner presided over a press conference where he spoke without slurring or stumbling his words — and generally appeared to be in excellent health. “I wanted to prove that bad things didn’t happen if you went without sleep,” said Gardner, who after completing his record, slept 14 hours and 40 minutes, awoke naturally around 10 p.m., stayed awake 24 hours, then slept a normal eight hours, researchers noted.
Back at Dr. Carlile’s sleep lab in Kingston, scores of people await testing and treatment for insomnia and related disorders. During my visit, he promises to sort me out too. The prospect tickles my fancy and gets me feeling like a kid in a candy shop. The hallmark of this Bohemian-styled office is an ornamental wall fabric woven by Dr. Carlile’s wife. It resembles a series of cat scans and represents the states of human consciousness. Human head molds, sporting the latest in sleep apnea devices, also rest atop his desk — doubling as new age sculptures. And electrodes — cardiac and snore sensors placed on the chest and abdomen — decoratively hang on the walls. With these, lab technicians are able to record patients’ brainwaves, heartbeats, breathing patterns and abnormal muscle movements over night, in one of six sleeping sanctuaries wired up with sonograms and infrared cameras. The sign on the front door of the building that reads, “Please do not make noise, people are sleeping,” is no joke.
In the middle of my interview with Dr. Carlile, a woman in a hyperaroused state knocks on the door, seeking Dr. Carlile’s assistance. She’s undergoing treatment at the clinic but takes a curious intermission in her sleep hygiene. Her implacable case of insomnia snowballed out of a single night of poor sleep. Her movements light and tentative, Dr. Carlile’s patient then leans awkwardly on the doorframe and appears to fold inward on herself. The dark bags under her eyes speak volumes about her condition.
Increasingly, bleary-eyed consumers are asking their family doctors for sleep medications, which are today as popular as Viagra, Botox and other “lifestyle drugs.” In the first seven months of 2005, nearly 25 million prescriptions for sleep medications were filled in North America, according to the U.S.-based IMS Health. And the number of adults ages 20 to 44 who took prescription sleep medications doubled between 2000 and 2004, says a survey recently released by Medco Health Solutions, a manager of drug benefit programs. The newest narcotics approved by the U.S. Food and Drug Administration (Ambien CR, Sonata, and Lunesta) aren’t as miraculous as their marketing suggests, but they’re far superior to traditional sleep inducers such as Halcion and Restoril. These older drugs make patients feel woozy and lose coordination, and are habit-forming.
When Oscar-nominated actor Heath Ledger was recently found dead in the bed of his rented New York City apartment, it appeared as though Ledger had overdosed on six types of prescription pills, including the sleeping variety. According to the New York City medical examiner, though, the cause of the 28-year-old’s death was really “acute intoxication” by the combined effects of the painkiller OxyContin, the anti-anxiety drugs Valium and Xanax, and the sleep aids Restoril and Unisom. Ledger had said in a November 2007 interview that his most recent completed roles in the Batman movie, The Dark Knight, and Bob Dylan biopic, I’m Not There, had taken a toll. “One week, I probably slept an average of two hours a night,” Ledger told The New York Times. “Suddenly, I couldn’t stop thinking. My body was exhausted, and my mind was still going.”
One never knows when insomnia is going to happen, according to Rev. Gailand MacQueen. “People should just accept that if it comes, it comes, and if it doesn’t, it doesn’t,” he says, referring to theologian Matthew Fox’s book, Whee! We, Wee All the Way Home. In Fox’s discussion of natural and artificial ecstasies, he heavily favours the organic experiences of friendships, sex, arts and craftsmanship, sports, travel and work. The Episcopalian minister and author shrugs off artificial — or what he calls tactical —ecstasies, including ritual dance, drug use, alcohol consumption, formal meditation, abstinence and celibacy, fasting and biofeedback, as well as voluntary sleep deprivation.
MacQueen continues: “There should truly be a loss of ego or social self in an ecstatic state or altered state of consciousness. The whole problem with tactical experiences is the process of getting to a higher plane is very ego-centered. You’re making the choice of trying to manufacture this experience instead of allowing the experience to come to you.
“But the temptation is huge. When I was in my 20s living in Hamilton, I had a religious experience while sitting in a pew of a downtown church. The incredibly awful feeling I felt that day in the dead of winter suddenly went away. And I spent a couple of years trying to recreate that feeling of peace. Like I say, it’s a great temptation.”
Dr. Carlile agrees. “Because we’re not in physical contact with what’s believed as the next world, we have these mysteries. It doesn’t look like science is going to help us solve these yet, so people feel they must go on some journey in their minds. It may be wonderment and a lovely episode of goodness. But a quick, material alternation of brain chemistry is not a valid (metaphysical) experience.
“Heed the Buddha’s warning: ‘Don’t waste your time on fruitless practices that aren’t going to give you real spiritual advancement.’ It’s not very profitable.”
Sure, sleep deprivation seemingly opens the doors of perception, providing me with a glimpse of an arcane universe. It’s also an outlet for connections not made during my upright hours — a dredging-up process for ideas I didn’t realize I had in me. But admittedly, these gains from burning the midnight oil are quickly lost when it becomes a regular habit. Maybe, just maybe, I should perform these sleep exercises the experts tout; pick up a “holy book” or even a “dime novel” in the light of day, as Dr. Carlile suggests; and patiently await that ‘ah-ha’ experience. It’s something to sleep on anyway.
Deep thinkers, light sleepers: Some famous figures in history were also famously insomniac.
Sir Winston Churchill (1874 – 1965), British wartime prime minister, statesman, orator and Nobel Prize-winning author. For most of his life, Churchill suffered depression — what Churchill himself referred to as his “black dog.” Some say it lead to the politician’s habit of sleeping only three hours each night. Churchill had twin beds and whenever he couldn’t fall asleep in one, he simply moved to the other. Only this way could he descend into blessed unconsciousness.
Samuel Langhorne Clemens, a.k.a. Mark Twain (1835 – 1910), American humorist and author, as well friend to presidents and European royalty. The father of American literature lay awake most nights. Legend has it that he that he once threw a pillow at a bedroom window while staying at a friend’s house. When the crash let in what he thought was fresh air, he finally fell asleep, only to find the next morning that he had smashed a glass bookcase.
W.C. Fields (1880 – 1946), actor and comedian. A “misanthrope who teetered on the edge of buffoonery,” Fields drank copiously, which many believe fuelled his legendary sense of humour. For Fields, sleep was the “Great Eluder.” Whenever insomnia wore him down during a film shoot, he would retire to his trailer for a few winks and likely a few swigs from the bottle. “The best cure for insomnia,” he once quipped, “is to just get a lot of sleep.”
Mary Faustina Kowalska, Polish nun and mystic. Saint Faustina claimed that Jesus Christ repeatedly came to her, commanding her “to spread the devotion of the mercy of God.” A few years into that mission, she became gravely ill and moved into a sanatorium, where she mostly lay awake in her bed praying for distressed souls. But the Catholic Church believed Kowalska to be delirious and denied her sainthood until 2000.
Thomas Edison (1847 -1931), American inventor who influenced the world with his phonograph and other electrical creations. But the “Wizard of Menlo Park,” as the press dubbed him, had great difficulty falling asleep. At 2 a.m., he could be found lying on a cot shoved against a rack of galvanic batteries in the gas-lit den of his laboratory. He claimed this is when he would experience a flurry of ideas, one of which was his “big bonanza” — the electric bulb.
Job, a character in the Bible’s Book of Job and a prophet in Islam. The thriving livestock rancher, husband and the father of 10 is renowned for his piety. But with God’s permission, Satan tests Job’s godliness with catastrophes, including economic hardship, the death of Job’s children and an “evil” skin disorder that keeps Job up at night. Shocked and outraged, Job cries out: “ . . . The evening is long and I’m exhausted from tossing about until dawn.”
In a few short years, social media has revolutionized the global conversation. But does more interaction mean better relationships?
By KEVIN SPURGAITIS
Originally published in the UC Observer, May 2011
I am fundamentally shy, embarrassed by disproportionate attention. Being swept up by the phenomenon of Facebook four years ago only underscored how ill-suited I am for relentless exposure through online social networking. When near-strangers approached me on websites with the familiarity of old friends, I felt fraudulent if I returned it in kind — bothered by the banalities of digital interaction and the limitations of expressing myself online. Still, I couldn’t resist. Indulging my curiosity for social media meant surrendering part of myself to it.
Inside a trendy brick-and-chrome-themed coffee house in downtown Toronto, I recently shared this anxiety with social media enthusiast Nick Valentino. Here, 20-somethings, wearing hooded sweatshirts and peeled goose-down coats, sit alone with their lattes, surveying messages on laptop computers. In the middle of the café, two women chat incessantly with each other, nonchalantly scanning their smartphones for e-mails and texts.
“Myself, I spend two to three hours a day reading and tweeting online, usually while commuting back and forth to work,” Valentino tells me over the roar of espresso machines and the fevered tapping of fingers. At times, the 36-year-old website developer talks with an instant-message brusqueness. Other times, he enthuses expansively about online social networks while trying not to sound too much like a “fan boy.”
Valentino was an early user of the social media website Twitter, which was launched in July 2006. Today he has three accounts. He admits he likes the acknowledgment Twitter brings — a response or retweet. The elation is an “8 out of 10.” “It’s exciting; you’re letting these people inside in what seems to be the safest way possible,” he says. “It’s a strange hybrid of the impersonal and personal.”
Earlier that day on Twitter, Valentino mused about mouth-watering pies, public transit woes and Prime Minister Stephen Harper’s vow to dismantle “the most democratic campaign finance laws in the world.” In one tweet he asked, “Was George Washington the victim of 18th century airbrushing?” In another, he riffed on a possible sequel to The Big Lebowski: “Guessing the plot will be about getting a new rug.”
Within a single generation, social networking on the Internet has reshaped modern culture and revolutionized how we relate to each other. For many people under the age of 50, online social networks have replaced television, newspapers and radio as their primary sources of entertainment and information. Social networking sites, such as Facebook and Twitter, are the first places they go to find love and ask spiritual questions. They have helped not only to organize political activists but to extend their reach in places, such as the Middle East and Europe, accelerating movements for change. Inside these electronic villages, we can connect with as many people as we like, simultaneously or successively. We can rebuild — albeit virtually — the kind of old rural communities where everyone knew everyone else.
But we’ve also lost control, say critics such as Steve Wozniak, the founder of Apple computers. “We can’t turn off our Internet; we can’t turn off our smartphones; we can’t turn off our computing devices,” he told CNN in December. So what are the implications of living in such a wired world? What impact will this constant connectivity have on future generations? Culture and technology critics focus on not only the exciting possibilities but also the distressing inevitabilities of this new society: the lack of authenticity, the loss of empathy for others and an erosion of physical relationships.
Canadians are right in the thick of the social media revolution. According to a 2010 ComScore study on Internet use, we spend more time online than users in any other country. About 68 percent of us are now online, and on average we log about 42 hours on our computers or smartphones every month. Statistics Canada says Internet use has increased steadily since 2000, with seniors being the fastest-growing segment of the wired population.
Canadians are also enthusiastic users of social media, too — more than 17 million are on Facebook, which places us 10th on the list of countries with the most accounts. Since 2003, Facebook — created by then-Harvard sophomore Mark Zuckerberg — has attracted more than 600 million users compared to Twitter, which now has 200 million followers together generating about 140 million messages — or tweets — a day, according to its developers.
With this explosion of social networking websites, you might guess that human relationships are flourishing as never before. You’d be wrong, though, says Robin Dunbar, a professor of evolutionary anthropology at Oxford University and the author of How Many Friends Does One Person Need?
Facebook friends shouldn’t be confused with real friends, he says bluntly. “Issues of social status and approval and the potential permanence of Facebook posts subvert all tendencies toward the types of authentic, risky communications that might lead to healthy and interesting relationships.” Put simply, people online are who they pretend to be, not who they actually are.
Dunbar argues that social networking has allowed us to amass thousands of acquaintances, but sites like Facebook and Twitter have not yet devised a way to cut through the “clunky, old-fashioned nature of relationships” themselves. Our circle of actual friends, he says, remains “stubbornly small,” limited not by technology but by human nature.
In 1993, Dunbar, a primatologist, proposed what’s now known as Dunbar’s Number of 150. That’s the maximum number of meaningful relationships that humans are capable of having — online and off. What was the size of Neolithic communities from the Middle East? An estimated 150. The basic military unit of the Roman army during the Republic? About 150 also. Even today, it’s the suggested number of Christmas cards one should distribute, even though I have never sent more than a handful each holiday season. Facebook, itself, completed analysis last year that showed that the average number of friends that its users had was somewhere between 120 and 130. That leaves just enough room for “Granny and Great Aunt Mary” who aren’t online yet, Dunbar says.
“The emotional and psychological investments that a close relationship requires are considerable, and the emotional capital we have available is limited,” he adds. “In the end, it’s actually meeting face to face — actually doing stuff together — that really makes the difference. And if you try to do it virtually, you are not only having increasingly impoverished relationships with people; you’re blocking the opportunity to go and meet new people and engage in the real live world.”
Our online acquaintances can be great sources of new ideas and information, and the Internet allows us to harness the power of these networks with “marvellous efficiency,” but they are distant, flimsy connections, according to award-winning writer Malcolm Gladwell. In a New Yorker article last year, the Canadian-born author of The Tipping Point and Outliers argued that online social networks are built around “weak ties.” The “evangelists of social media,” he wrote, “seem to believe that a Facebook friend is the same as a real friend and that signing up for [organ] donor registry in Silicon Valley today is activism in the same sense as sitting at a segregated lunch counter in Greensboro in 1960.” Facebook doesn’t succeed in motivating people to make a real sacrifice, he continues. “If you are of the opinion that all the world needs is a little buffing around the edges, this should not trouble you. But if you think that there are still lunch counters out there that need integrating it ought to give you pause.”
Researchers at the University of Texas, however, have reached a different conclusion. According to a study they conducted last year, social media websites strengthen ties in unique ways for different age groups. “Facebook is not supplanting face-to-face interactions between friends, family and colleagues,” media professor S. Craig Watkins told Reuters in November. “In fact, we believe there is sufficient evidence that social media afford opportunities for new expressions of friendship, intimacy and community.”
Last year, on the eve of Valentine’s Day, hundreds of people flocked to inaugural “Flitter” parties in Canada. They tweeted flirtatiously on their iPhones and BlackBerrys, vying for the attention of other single “tweeters.”
For Vancouver native Meg Fowler and her partner Gradon Tripp, love steadily bloomed 140 characters at a time. They both started using Twitter in early 2008. Soon they began to follow each other’s tweets and blogs. What began with mundane messages, like “I’m drinking coffee, so are you,” rapidly progressed into private notes between the two. After months of long-distance communication, they decided to meet in person in Boston, where Tripp lives and works. Sparks flew, and in April 2010, Fowler moved to Boston to live with Tripp.
“(Gradon) seemed nice and articulate online . . . and when I clicked through to his blog, he didn’t look too shabby, either,” Fowler, 36, explains. “But five minutes after I met him, I was completely comfortable. It’s impossible to describe how that was possible because I know it sounds loopy, but perhaps it was the result of the hours of online conversation prior to that fateful day.”
She continues, “Sure, [social media] comes with all the dents and frustrations that humans have in real life. It exposes you to weird people and not-so-great people. But with it comes an extra layer that can embolden people to say things they otherwise might not mention. . . . It not only leads to new relationships, but new opportunities, too.”
Fowler, a communications professional and co-ordinator of the charity group Social Media for Social Change, admits that not everything she says is particularly interesting or meaningful. But as she pointed out in a tweet from February 2008, “I know a lot of people who don’t need back story. They just take what they see. Just for those that do, I want to be warts and all.”
So what does the explosion of online networks mean for communities of faith? Aaron McCarroll Gallegos, the digital content strategist for The United Church of Canada’s interactive WonderCafe.ca website, suggests that “WonderCafe, and its French-language partner site, Caféchange, offer people in the United Church a unique way to connect with each other across regional and congregational lines. To others, they have offered the first real opportunity they’ve had in their lives to discuss spiritual questions. In our post-Christian society, situations like this are more common than many may think.”
The “give-and-take, more transparent character of social media,” he adds, helps the church shed its “sage on the stage” image in favour of a “guide on the side” model — something the church’s research has shown younger Canadians are looking for.
But surely biblical community requires more than fan pages and tweets?
As it happens, more people are using the Internet for religious and spiritual purposes than banking or dating services, according to Christopher Helland, an associate professor of the sociology of religion at Dalhousie University in Halifax. In a paper published in 2008, Helland examined the impact of computer-mediated communications on a variety of religious traditions. He cited a recent study by the Pew Internet and American Life Project, which found that 64 percent of wired Americans exercised their faith online. Although no comparable studies have been completed in Canada, these numbers reflect all North American Internet activity, Helland said.
“It should come as no surprise that the Internet quickly became adapted as a tool for communicating religion to the masses. Religiously motivated individuals and organized religions alike have always used media to spread their message. It has been argued that the Reformation would not have succeeded if it weren’t the manner in which Martin Luther effectively utilized the printing press. By the 18th century, the mass printing and distribution of pamphlets were a given within the numerous Protestant movements competing for adherents in Europe and the New World. . . . Today, people maintain their own levels of religiosity by going online and sending a prayer request to a world-wide prayer network, or viewing Jerusalem’s Wailing Wall in real time. . . . It’s a powerful connection.”
But there’s a downside to Internet religion. “It’s amazing how quickly people can get nasty online,” Helland tells me, pointing to Second Life, a virtual world on the Internet where people can attend worship, among other things, in avatar form. Some users do “inappropriate and horrific things” that they would never do in an actual sacred space. The Church of England, which hosts an eye-catching, three-dimensional environment, has booted out thousands of people for their improper behaviour, he adds. “For some, there’s maybe not as strong — and maybe not as deep — a religious commitment online. There aren’t the same ethical consequences for bad behaviour as there are offline. We all know the rules and regulations of traditional churches. They’re sort of embedded, even in the architecture.”
At 10:53 p.m. on Christmas Day last year, Simone Back, a 42-year-old charity shop worker from Brighton, U.K., posted her final Facebook message: “Took all my pills be dead soon so bye bye every one.” British newspapers reported that as many as a thousand “friends” looked at her page that night, and not a single person called for help. In fact, some Facebook users even taunted Back over her final status update, with one declaring that the fatal overdose was “her choice.” Another dismissed Back’s cry for help, saying, “She’s not a kid anymore.”
Sociologist Sherry Turkle says that the more we immerse ourselves in online social networks, the more we sacrifice in the way of depth and empathy.
“We have invented inspiring and enhancing technologies, yet we have allowed them to diminish us,” writes Turkle in Alone Together: Why We Expect More from Technology and Less from Each Other. In the book, Turkle paints a dismal portrait of human disconnectedness. She describes teenagers who are shaped not by self-exploration but by how they are perceived by others online, and mothers who are better at texting their children than talking to them. According to Turkle, users’ ability to relate to others spontaneously has atrophied as a result.
I asked Derrick de Kerckhove about why social media networks seem to differ from the corporeal kind. De Kerckhove is the former director of the University of Toronto’s McLuhan Program in Culture and Technology and author of The Skin of Culture and Connected Intelligence. He explains that social media networks are global pulses emanating from individuals and connecting with others who are like-minded but not known. With real-life relationships you get a buzz — from the body, from movement, from just being somewhere. “You’re not going to get that kind of buzz if you’re exclusively online.”
But de Kerckhove says there’s nothing to fear — social networks are another chapter in the story of language and technology. “We must always keep in mind that the big metamorphoses going on right now are the consequences of human languages being reprocessed by electricity,” he says. “The first big transformation occurred when language emigrated from the bodies of speakers to text written on walls, papyrus, animal skin and later paper. These shifts were accompanied by several revolutions, psychological and social. . . . So in effect, being human is now subjected to language transported by electricity, which is moving us into very different kinds of social individual conditions.” Personally, de Kerckhove has opted not to have a Twitter account — he prefers socializing face to face.
Back in Toronto, almost invisible in the vastness of the coffee house — now lit by laptop and smartphone screens — Nick Valentino reflects on what all this 24-7 connectedness might mean.
“When the first novel was written, they thought it was going to poison people’s minds, right?” he quips. “Sure, I see [online social networking] bordering on egotism sometimes. But I feel it enriches me and has put me in touch with good friends — people I wouldn’t have been able to connect with in real life. If I’m ever in Philadelphia, I wouldn’t hesitate to contact my Twitter followers and invite them out to coffee.
“Does it mean less time reading War and Peace? Absolutely. But is that necessarily a bad thing?”
For the record, Valentino has posted poetry on Twitter, too — daily and in exactly 140 characters. In March 2009, Valentino wrote in a self-serious tone, “Lately buoyed by the joy of sharing, a waiting message brings spirits crashing. Hope languishes, lies fallow, like too ripe fruit unplucked.” The following month: “Yet, not quite the fetid landscape some might have us believe. These pre-drawn worlds still inspire, provide a fertile ground for imaginings.”
For all their slick certainties, Facebook and Twitter may one day peter out. But there will undoubtedly be successors. The world is irrevocably binary. You’re either wired or you’re not. You’ve either given “thumbs up” on Facebook and tweeted on Twitter, or you’re curiously left on the sidelines. Like it or not, social media is a virtual experience that is pop cultural, political, amorous and, yes, even spiritual — perhaps just the stand-in we need for a real world that is fractured and ailing.
Besides, wasn’t it 17th-century philosopher René Descartes who said, “I tweet, therefore I am.” Well, he would have if he were alive today.
A General’s Mea Culpa
Former UN force commander remembers Rwandan Genocide 10 years later
By KEVIN SPURGAITIS
Originally published in the Catholic New Times, May 2004
Somewhere in Rwanda nearly a decade ago, Lt. General Romeo Dallaire, then former force commander of the UN Mission to Rwanda, journeyed down a precarious stretch of road in his Land Cruiser, subjected to sniper fire and the vacant stare of a three-year-old. Clad in a filthy T-shirt and tattered underwear, encrusted in dust and dirt, the orphan stood silently sucking on a biscuit — indifferent to his distended belly and open sores. Having seen many children — and their parents — hacked to pieces in a civil war, Dallaire amorously decided the boy would be the fourth addition to his family back in Canada. If he couldn’t save Rwanda, the general thought, he could try to save the child. However, the reverie abruptly ended when a well-armed rebel — no older than 15 — approached, yanking the child from the general’s arms and carrying him off into the bush. A struggle for the boy would have been fruitless, the general surmised. Not knowing how many gun sights were fixed on him, he reluctantly climbed back into his land cruiser and continued through the war-torn wasteland.
“The phrase, ‘Never Again, Plus Jamais’ has proven to be one of the most ineffective lines that could have been imagined,” Dallaire says while sitting in an auditorium at the University of Toronto. “I don’t think it has brought the results that can prevent entire genocides.” His words come on the 10th anniversary of when Rwanda President Paul Kagame, then rebel leader of the Rwandan Patriotic Front (RPF), ousted Hutu extremists from government. The Hutu hard-liners systematically slaughtered more than 800,000 minority Tutsis and moderate Hutus within 100 days, following a plane crash that killed Rwandan president Juvenal Habyarimana in April 1994.
Earlier this year, Dallaire finished duties as a UN force commander after testifying for the prosecution at the International Tribunal on the Rwandan Genocide in Arusha, Tanzania. After serving 35 years with the Canadian Armed Forces, the 57-year-old is now an adviser on war-affected children to the Canadian government. His newly released book on the genocide, Shake Hands With the Devil: The Failure of Humanity in Rwanda, is a Canadian best-seller. It is an account of his military experience in sub-Saharan Africa and an exposé of the UN’s failures, as well as a tribute to the Rwandan people.
Soldiering was not only his profession, but his passion growing up French Catholic in Montreal’s east end. The son of a non-commissioned officer in the Canadian Army, Dallaire attended mass every Sunday. On Tuesdays, he went to Cub meetings.
At the peak of his military career, he was dispatched to the Rwandan capital of Kigali in August 1993. The soft, mist-covered mountains, tiny terraced fields and rolling hills resembled “a kind of garden of Eden,” according to the general. His mission was described by Dallaire’s superiors as a classic peacekeeping operation — “a confidence-building exercise designed to encourage belligerents to get down to the serious business of peace.” It was to be the United Nations Observer Mission in Rwanda (UNOMIR). Modest in scope and size, the operation consisted of 81 unarmed military observers situated on the Ugandan side of the Rwandan border. When the genocide began, there were about 2,500 UN troops in Kigali, but a UN Security Council resolution dramatically reduced their force to a skeleton staff of 270 troops.
Meanwhile, a humanitarian crisis quickly enveloped the region with the attempted annihilation of Tutsis by Hutu extremists, including the butchery of children barely out of the womb. While Rwanda was awash in guns and grenades readily available in the local market for US $3, Dallaire was unable to persuade UN Secretary General Kofi Annan, then chief of peacekeeping operations, and the UN that he wasn’t some “gun-happy cowboy.” His unprecedented, coded cable message alerting the top brass was disregarded. He was painfully reminded that UNAMIR’S role was “limited to a monitoring function.”
Lt. General Romeo Dallaire, former force commander of the UN Mission to Rwanda
“My own mea culpa is this: as the person charged with the military leadership of UNAMIR, I was unable to persuade the international community that this tiny, poor, overpopulated country and its people were worth saving from the horror of genocide — even when the measures needed for success were relatively small.”
Dallaire also cites his own inexperience as a third-year commander of the 5th Brigade Group. Although he lacked peacekeeping experience on the ground, the elated three-star general was eager to take up his first foreign command. With no political expertise, background or training in African affairs, Dallaire acknowledges he was unable to effectively “manoeuver in the weeds of ethnic conflicts in which hate trumps reason.”
Dallaire may be deemed an honest man, but he is not unanimously regarded as a hero. Belgian Senator Alain Destexhe not only accuses the general of failing to protect Rwandans, but also abandoning 10 Belgian soldiers hacked to death by Hutu extremists. “It’s too easy to refuse to take any responsibility and to heap the blame on others, as he (Dallaire) did,” Destexhe told an audience during an April conference on the Rwandan genocide. Destexhe maintained Dallaire should either have disobeyed the U.N.’s order not to intervene or resigned his post.
In his book, Dallaire admits his small-scale peacekeeping mission was an adhoc, band-aid solution inexplicable to the families of those killed. Rwanda, he writes, was a nation dependent on foreign aid and international funding to avoid bankruptcy. The people of Rwanda were deemed an “insignificant black mass living in abject poverty, in a place of no consequence.” Dallaire was told Rwanda did not count.
“We are not necessarily guided in this era of complexity to bring the solutions for humanity. And why not?” the befuddled veteran asks. Killing women and children is not inherently a part of Rwandan culture. The practice was exported by white colonial powers, many of which conducted some of the most horrific human rights abuses for more rubber, tea and poppy, Dallaire charges. Hostilities between the Tutsis and Hutus were rooted in the Belgian colonial rule of the early 20th century. Then, Belgians viewed the tall, light-skinned Tutsis as a “closer kind of European,” elevating them to power over the majority Hutu — characteristically shorter and darker in complexion.
“The depth of commitment to these people was non-existent … Despite this catastrophic failure, (first world leadership) is still wrapped up in politics, self-interest and the electoral process of public opinion. It has not advanced to a level where there is consideration of these human beings.”
His eventual departure from Africa in August 1994, and his promotion to deputy commander of the Canadian Army offered no respite; the genocide’s barbarities haunted him in waking life and drug-induced sleep. A man apart, Dallaire says he fell rock-bottom in the late 1990s, plunging into a “disastrous mental health spiral” marked by several suicide attempts. He reportedly tried steering his car toward concrete barriers while driving from Ottawa to Montreal. And in April 2001, Dallaire was determined to cast himself into the Ottawa River, instead passing out drunk on a park bench. Affected by post-traumatic stress and facing exhaustion, he finally received a medical release from the Armed Forces.
Even a road trip with his wife and children harks back to one of many excursions through the RPF zone, where roadsides were littered with dead Rwandans — half-nude corpses and whitened skeletons in the “position of total vulnerability,” he recalls. In his book, Dallaire recounts how churches became sites of “calculated butchery” discriminately executed by armies and militias. Pregnant woman were disemboweled. Men’s genitalia were mutilated. Most victims were left to bleed to death. In hospital compounds, families huddled with their wailing, hungry and dehydrated children amid the smell of unwashed and decaying bodies. It was like a concentration camp, he says. “Here, the elderly suffered a slow death, and newborns brought anguish to their mothers, who couldn’t feed them.”
Men are now conspicuously absent in towns and villages — their numbers diminished following the genocide. Of the Tutsi women who were raped during that period, an estimated two-thirds now live with HIV-AIDS. One-quarter of all Rwandan children are orphans, according to NGO reports.
According to the Associated Press, in Kibuye town, 1,000 freed killers now walk amongst Tutsis, even drinking beside them in local bar halls. Two years ago, more than 25,000 so-called genocidaires were released back into the streets. And tens of thousands more will follow as authorities try to curb the country’s prison population, by reenacting traditional court systems imposing restitution and community service for convicted murderers.
“I was amazed at Rwanda and how it’s recovered in a clinical sense,” Dallaire told CNT. However, there are still, as stated by Rwandans, Tutsi survivors trying to readjust. There’s their reintegration with the large Hutu community. They are going to be entering the complexities that will have to be molded together.”
In Shaking Hands with the Devil, Dallaire describes the many faces of death during the genocide, “from the innocence of babies to the bewilderment of the elderly, from the defiance of fighters to the resigned stares of nuns.” He struggles to remember every one of them, yearning to disappear into Rwanda’s blue-green hills with their ghosts, he writes.
“Rwanda is the story of the failure of humanity to heed a call for help from an endangered people … We watched as the devil took control of paradise on earth and fed on the blood of the people we were supposed to protect.”
Dallaire remains self-effacing — a “simple pilgrim” unwilling to pardon himself for his paralysis as UN commander. Yet, he holds out hope for himself, Rwanda and the international community. The career soldier admits if he wasn’t an absolute optimist, he would be dead.
According to Dallaire, the UN must undergo a renaissance if it is to be involved in future conflict resolution. In the 21st century, the ‘blue-beret neutrality’ is tarnished, he opines, urging First World countries move beyond national self-interest. “We have not brought one solution to these very complex problems, and as such, hundreds of thousands, millions, have become internally displaced and suffering. This has not been a stellar fifteen years — This is the new world disorder.”
Dallaire extends a couple of questions to present-day leadership: “Are all humans human or are some more human than others? Do some actually count more than others?” The scantily clad child he once coddled along the road to Kigali bore the same eyes of his three-year-old. “Both the same, both the same, no different.”
Dallaire concludes emphatically but in a voice barely above a whisper: “We cannot permit ourselves to say that humanity is advancing, if the larger percentile is not treated with dignity, as having the hope and the serenity of seeing their falling generations evolve. They’re just looking to have their fundamental human rights, to be considered a complete human just like any of us.”
Out of Africa
Once a high-ranking official in Zimbabwe’s government, refugee Chris Mazhandu hopes to become a United Church minister and a force for change back home.
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, December 2007
Christopher Mazhandu looks serene as a monk gone to God, resting in a back pew at Stoney Creek, Ont. United Church, gazing across the chapel toward the pulpit. Here, he seems most at ease sermonizing on the politics of his native Zimbabwe. His face even has strange elasticity — expressionless one minute only to twist suddenly into a gaping, oversize grin.
Born in Central Zimbabwe near the capital of Harare, Mazhandu is the former deputy secretary of trade in charge of Zimbabwe’s export promotion — one of the first indigenous Africans to be placed at the top of the country’s civil service. In recent years, however, the 58-year-old has fallen from grace — forced to start from scratch as a political refugee living in Canada. These days, he is labouring to become a United Church minister — a dream almost cosmically intertwined with his desire to help rebuild his beleaguered homeland.
“I really don’t know what happened to my life,” Mazhandu says softly, as if uttering a confession. “Over the past few years, it hasn’t been easy for me inside and outside of Zimbabwe.”
The small, landlocked country is distinguished by Mount Nyangani, the nation’s highest rock face; Victoria Falls, one of the natural wonders of the world; and the stone enclosures of Great Zimbabwe, the largest ruins on the African continent. For years, it was a major tobacco producer and a so-called breadbasket for surrounding countries. But Zimbabwe’s riches have been inextricably tied to President Robert Mugabe, the African liberationist who became the country’s first black leader in 1980. His forced seizure of almost all white-owned commercial farms, said to benefit landless black Zimbabweans, has precipitated a decline in production and a collapse of the country’s agriculturally based economy. Anti-Western and suspicious of capitalism, Mugabe now presides over a nation, where poverty and unemployment are widespread, along with various civil, human and political rights abuses. The Brussels-based International Crisis Group (ICG) recently warned that Zimbabwe is “closer than ever to complete collapse.”
Mazhandu possessed a streak of stubborn idealism that did not mesh readily with Mugabe’s government. Following Zimbabwe’s eco-political meltdown in 2001, Mazhandu, his wife Margaret and four of his five children joined an estimated 3.5 million Zimbabweans — a quarter of the population — who fled abroad as refugees. According to UN statistics, some three million people have gone to South Africa, while 570,000 people have been displaced in transit camps within the borders of the country —victims of continuing evictions and violent farm seizures, as well as Mugabe’s operation to forcibly clear disease-infected slums. Consequently, the departure of the majority of the country’s professionals, including doctors, nurses, teachers and lawyers, has sent the health, education, public service and transport sectors spiraling into oblivion.
After the Mazhandu’s departure, their own property was seized, their possessions were looted and their life savings, which were non-transferable anyway, were considerably devalued. As Mazhandu puts it, “Mugabe came around and took off all the zeros from my pension.”
Stripped of their ego, the family first resettled in Toronto before moving into a subsidized apartment in Stoney Creek, a sleepy little cluster of subdivisions and strip malls in the eastern part of Hamilton. Mazhandu quickly became enamoured with the area. He liked the community’s stasis, its proletarian virtues and unassuming appearance. Here, Mazhandu’s long-dormant spiritual impulses were kindled anew, especially inside Stoney Creek United, where he and his wife come to pray every given Sunday and volunteer any other time of the week.
But his qualifications and education aren’t recognized in Ontario. One of the few places he could find employment was a meat processing plant belonging to a major food company. In 2005, Mazhandu first joined the line as a general labourer, gutting and cleaning hogs during the late night shift. The evisceration of animals, he admits, was “messy and dangerous.” But he was always careful not to julienne his fingers with any slaughterhouse machinery.
Today, he keeps slightly better hours and earns a better salary as the plant’s head supervisor of sanitation. But there are still the strains of a blue-collar job.
“I have been successful in that I’ve fit into the system, but not in terms of Bill Gates,” Mazhandu says, making a cage of his fingers, which bear a few cuts and scrapes that refuse to heal. “God watches over me and my family. I am no longer a refugee; I am a permanent resident of Canada. And I’m building up a new pension. To be honest, I have no complaints. I am, in fact, grateful.”
Margaret Mazhandu, formerly a teacher and entrepreneur — at one time running the biggest flea market in Harare — is now a part-time caterer and rehabilitation therapist at a private group home. Of her husband, the 52-year-old says, “Chris would never say it loudly and clearly, but it was very difficult for him to come from a good position in society and work for subsistence in a meat factory. But we could no longer afford a lot of things for our three daughters and two sons, who are either in university or finding their way in Canada.”
Then in 2006, Mazhandu and his wife returned to Zimbabwe to attend the funeral of his 85-year-old father, Rev. Enoch Muzondiwa Mazhandu. He was the last from a large, traditional Shona family. Self-educated, he was first an evangelist before becoming an itinerant minister of The Methodist Church of Zimbabwe. From 1956 onwards, he was a part of a generation of “bicycle preachers,” young ministers from the United Theological College of Harare who made huge sacrifices in building up the Methodist Church in southern Africa.
In his eulogy for his father, Mazhandu wrote: “(Enoch Mazhandu) healed the brokenhearted who had lost hope in this life, preached deliverance to those who were captives to this ephemeral world and recovered the spiritual sight of the blind to set them free of superstition. . . . On that score he was part and parcel of what one might call, ‘The Epworth Gang,’ trained to civilize the black man and give him both the physical and spiritual tools to free himself from colonial bondage and sin respectively. They were true liberators of our country, as they were by default, the mouthpiece, voice and conscience of the African.”
When Mazhandu and his siblings saw their father for the last time on Oct. 16, 2005 — before the patriarch left the U.S. for Zimbabwe to spend his remaining days — Mazhanda said he could see a “youthful spirit to do things for others” still burning inside his father. On that occasion, Enoch Mazhandu counselled his non-secular son to finally go to a seminary and do his part for “Jesus and the kingdom of God.”
Last year, Mazhandu enrolled at the University of Toronto’s Emmanuel College to complete a master of divinity, and is now en route to becoming a United Church minister. As an Emmanuel College student, he has a superabundance of energy. He admits he brings an intellectual hunger, eager to engage in opportunities for “gathered community worship and for personal, spiritual formation.” However, due to financial restraints and a work-related injury, he dropped out of school during the fall semester although he plans to resume his studies in January.
“I still feel strongly about becoming a United Church minister,” he says. “I ran away from this calling — this revelation — for quite some time. But the longer I ran, the more pressure I felt on my shoulders.”
He continues: “I don’t know what plans God has for me, but I would like the chance to repay humanity and use the Bible as a weapon back home.”
Ret. Rev. David Bisch, of Stoney Creek United, says: “Chris and Margaret are people of deep conviction, which I very quickly became aware of. It is actually their sense of social justice that is driving them to succeed in Canada.
“Chris’s future role as a United Church minister could provide a veneer of protection when speaking out in his homeland. It would be a terrific investment for the church to help him return to Zimbabwe by way of his skills and strengths and transform the country back to what he knew and loved.”
Mazhandu recalls his 2006 homecoming outside of Harare, where roadsides were littered with “zombie-like persons in positions of total vulnerability.” Fuel and power shortages were — and continue to be — a regular feature due to Zimbabwe’s US$35-million unpaid bill, as well as scarcities of coal and spares for power stations and mining equipment. The country’s bakeries also closed up and supermarkets were warned by the state that there would be no bread for the foreseeable future. Mazhandu describes hunger in some parts of the country as “disastrous and totally criminal on the part of the government.”
Mugabe has accused the U.K. and its allies of sabotaging Zimbabwe’s economy in revenge for the land redistribution programme. His government largely blames a long-running drought and electricity shortages for the wheat shortfall, saying that power cuts have affected irrigation and halved crop yields per acre. Despite its deepening unpopularity, Zimbabwe’s parliament recently debated a bill that will permit President Robert Mugabe to appoint his successor without holding a general election. Parliament is also expected to redraw constituency boundaries in favour of the ruling Zanu-PF party.
Nevertheless, there’s been an all too “quiet diplomacy” on the part of South Africa’s leaders, as well as Zimbabwe’s main opposition parties and churches. Mazhandu admits he wouldn’t push for the president to be overthrown, jailed or executed neither. He merely wants a second liberation. “As a Christian, I want to forgive Mugabe, as he was instrumental in an independent Zimbabwe and once called for the conversion of swords into ploughshares. I hope he lives as long as possible to see what is good governance.”
For Mazhandu, sitting in a pew inside Stoney Creek United arouses a whole orchestra of rich emotions: pride, patriotism, nostalgia for the past, hope for a rejuvenated future. “When I close my eyes, I see myself behind the pulpit of any United Church in Canada,” he says, his words now carrying a bit more conviction “I see myself working in the same capacity back home too. In the future, I envision modern, electrified villages in Zimbabwe — with running water and market gardening on a small, intensive scale and so forth. Only then can the spiritual deficits of people be dealt with. . . . Only then will my country be restored to its former glory.”
The Cuba Syndrome
Pills, chills and a communist manifesto
By KEVIN SPURGAITIS
Originally published in the Catholic New Times, May 2005
HAVANA — It’s still billed as a socialist paradiso. It boasts 60,000 physicians — one for every 136 people on the island, and a family doctor and nurse for every neighborhood. The cash-strapped nation’s medical schools also dispatch more than 20,000 practitioners to Africa and Latin America. According to the World Health Organization (WHO), its infant mortality rates remain lower than any other developing country. Fewer children die here than in parts of the U.S.
Judging by its caloric intake per capita, Cuba is faring well in 2005. Afro-Cubans are especially doing better today than they have historically, reaping the fruits of the 46-year-old Revolution: universal health care, housing and education. However, long-time critics of Cuba President Fidel Castro easily shrug off these gains. The Communist system here is still crumbling, they say, along with the Soviet and Spanish-inspired apartment blocks. The island’s archetypal charms — its ‘postcardesque’ seashores and palm trees — are eclipsed by rusty bicycles and horse-drawn carts. Anachronistic Chevies exhale black plumes. Big rigs haul their human cargo — the bulk of commuters — in and out of city centers. With these ‘Cold War’ deprivations, the Caribbean country narrowly stays afloat, according to Cuba watchers like John Kirk, a professor of Spanish at Dalhousie University.
“It’s a very bizarre situation in Cuba; the status quo here requires dabs of paint or dire plasterwork,” says Kirk, who has written about contemporary Cuba for more than 27 years. He’s also a consultant for Canadian NGOs and a volunteer with Cuba’s own fishing fleet.
When the Soviet Union’s subsidies to Cuba ended in 1989, the island’s 11 million people struggled. The average Cuban lost 20 pounds of body weight during the so-called Special Period between 1993 and 1994. More than 52,000 people went blind due to vitamin deficiencies. “… But there weren’t massive rebellions against Castro because everyone suffered equitably (amidst cutbacks),” Kirk says.
The country then had two choices: they could make concessions, or adhere strictly to their socialist principles and “go down faster than the Titanic,” he adds. They chose the former exit, creating a quasi-capitalist economy. In order to preserve the Revolution’s staples of free schooling and health care, the government legalized the U.S. dollar (the currency was dropped in winter 2004). And as many as two billion visitors were allowed to enter the island annually – more than 500, 000 were Canadians, the single largest tourist population.
With many sugar mills declared insolvent, Castro also took modest measures allowing small-time entrepreneurs — shoemakers, barbers, carpenters, tailors, etc. — to open up shop. And some state-owned companies were granted financial independence. Similarly, prostitutes and hustlers openly peddled in the ‘blackmarket.’mChild sex tourism reportedly flourished, too, seeing a number of tourists convicted of offences relating to the corruption of minors — those under age of 16.
Today, the Revolution’s virtues are still extolled with state-sanctioned graffiti. Cuba’s co-revolutionary figure and former industry minister, the late Ernesto Che Guevara, is immortalized on edifices. In addition, anti-American propaganda dots the Cuban countryside beside billboards promoting cultural exports like the Buena Vista Social Club.
Opposed by the neighbouring superpower for nearly 50 years, Cuba’s Communist dictatorship has been labelled “an outpost of tyranny” by the U.S. — a part of the so-called “axis of evil.” After Castro’s 1959 overthrow of the right-wing dictator, Fulgencio Batista, the U.S. government suspended diplomatic relations with Cuba. It’s also retaliated with an economic embargo and constant talk of regime change on the island.
“Given their deprivations and poverty, I’m amazed that the spirit is still with many Cubans,” says Canon Rev. Philip Wadham, the Anglican Church of Canada’s Latin America and Caribbean mission officer. He’s assisted the Episcopal (Anglican ) diocese of Cuba since 1997. “Cuban’s resiliency is just extraordinary. And the people are still gracious and hospitable. I rejoice with every one of them.”
Raphael, a Cuban national now living in Toronto, misses the balmy — sometimes sultry — weather and his “spirited” compatriots. However, the 36-year-old doctoral student admits that his homeland is not the same one he left more then seven years ago, when he joined the Cuban Diaspora.
“People are changing. People are aggressive. People are sad. They are not laughing all the time like they used to. There’s no time for that anymore — the laughter,” says a soft-spoken Raphael. Bearing a special visitors’ permit — and gifts — he periodically returns to Havana to see his family. He also sends money to his father, a professor and former revolutionary. With these foreign remittances, his close relatives are better off than most.
“They are living because I’m now working outside of Cuba, sending them money. It’s the only reason they can maintain a decent standard of living.”
Most homes in the country are filled with immediate family members and in-laws. Sometimes, there’s no telephone. And Internet-ready computers are superseded by shoddy TV sets and shortwave radios. Their ration cards or liberta offer a social safety net, though. According to Cuban government sources, the 30-product monthly food basket includes 2.7 kg of rice; 1.5 kg of refined sugar; 0.25 kg of beans; a small amount of coffee; 2 kg of salt, .25 kg of cooking oil and 1.5 kg of pasta. Everyone receives one toilet roll a day, plus soap and toothpaste. Chicken and fish vegetables are handed out upon availability. Nonetheless, these rations must sometimes be topped up with ill-gotten goods, Raphael says. Because the ‘dollar stores’ are expensive, some will smuggle daily essentials on a bus from Havana to Santiago de Cuba and back.
“If you work on a state-owned chicken farm, you’re going to want to sell some poultry on the ‘blackmarket.’ In Cuba, people are not looking for drugs, they are looking for things like cheese.”
In Castro’s Cuba, there are no death squads characteristic of other Latin American nations of old. However, the country is marred with a poor human rights record. According to Amnesty International (AI), there are some 600 political prisoners in Cuba, while the UN estimates almost twice that number. Seventy-five defendants were tried and convicted during a March 2003 clampdown. They included human rights defenders, labor unionists, librarians, medical doctors, teachers and Raul Rivero, a prominent poet and independent journalist. They were all accused of “acts against the independence or territorial integrity of the state,” and abetting U.S. policy against Cuba. Critics called the trials a “sham” without due process or adhering to international standards. Seven dissidents have since been released on health grounds, while others continue serving sentences between 6 and 28 years.
Raising the ire of democracy advocates, a firing squad also executed Lorenzo Enrique Copello Castillo, Bárbaro Leodán Sevilla García and Jorge Luis Martínez Isaac in April 2003. The trio was convicted under Cuba’s anti-terrorism legislation after hijacking a small passenger boat and endeavouring to leave the island illegally. Their appeals fell on deaf ears. Their relatives were informed about their deaths only posthumously. Castro claims his government is only curbing subversion and a probable migration crisis. In recent years, officials have refused visitations by both UN and AI monitors.
However, for more than a decade, Canada has joined other countries at the UN Commission on Human Rights, passing a resolution imploring the Cuban government to respect civil and political rights.
The Government of Canada says: “(The country) has traditionally maintained a balance view of human rights in Cuba, that recognizes the achievements in a number of areas including health and education, but also expresses concern about restrictions on political liberties.
“We would like to see significant changes towards democracy and a market-based economy in Cuba. Canada has a policy of engagement with Cuba and through our trade, aid and political and cultural programs, our presence there allows us to share these more broad, liberal, democratic values.”
According to political science professors Dr. Paul Brown and Martine Durier-Copp, with Dalhousie University’s School of Public Administration, Castro’s governance has shown an “impressive capacity” to re-adjust its policies, especially regarding capital punishment. There’s a lot of self-criticism that goes on at the highest levels. Cubans are not fearful of detainment for any sort of public outcry, rather the prospect of starving or dying from a non-communicable disease, they argue.
Advisors to the country since 1998, Durier-Copp and Dr. Brown head up Dalhousie’s Training in Economic Management Project (TEMP) on the island. With support from the Canadian International Development Agency (CIDA), it provides technical assistance and institutional training to Cuba’s public sector.
Says Durier-Copp: “Economic prosperity is not the be all and end all for all nations. Cubans are very happy people for the most part. They smile. They dance. They are jovial.”
Dr. Brown agrees: “To what extent can Cuba ‘open up’ and still retain its passion for equality? We’re not talking about Cuban Communism here, we’re talking about true Cuban Nationalism.”
Castro remains the paradoxical, proud papa of the Revolution. During the Dengue Fever outbreak in 2000, the president materialized in public, in a cavalcade of two jeeps and two limousines, Dr. Brown recalls. Without prodding by officials, people stood on park benches and climbed trees, crying out, “Fidel, Fidel.”
Seemingly benign even in his trademark army fatigues, Castro stepped outside his jeep, waded through the wide-eyed crowd and patted children on their heads before returning to his escort.
“Everyone wants to see him — and touch him if they can,” Dr. Brown says.
At 78, the autocratic leader has survived slews of physical and character assassinations. He is grayer, sicker and shakier these days, rumoured to have a ‘smorgasbord’ of serious illnesses: heart trouble, a brain tumour and Parkinson’s. Yet with extraordinary self-belief, he remains the flag-bearer of his own manifesto.
Of course, history will be on his side, as Castro declared in July 1953, after his failed attack on the Moncada army barracks pre-Revolution. At his trial, before sentenced to 15 years (pardoned after just two) he decried: “ … The country cannot continue begging on its knees for miracles from a few golden calves … The happiest country is the one which has best educated its sons, both in the instruction of thought and the direction of their feelings … Condemn me. It does not matter. History will absolve me.”
Half a century later, in a May 2004 speech, the Cuban leader denounced U.S. President George W. Bush’s continued sanctions against the island. Before demonstrators outside the U.S. Special Interests Section building in Havana, he said: “… You label a tyranny the economic and political system that has guided the Cuban people to higher levels of literacy, knowledge and culture than those in the most developed countries in the world.”
Along the stately Paseo de Martí, Habañeros can be found discussing baseball and Castro’s likely successor: his much-maligned brother Raúl, the first vice-president. According to Kirk, there will be no bloodbath in Castro’s wake. No sudden flood of foreign investments.
“As opposed to a massive rebellion against the Cuban political structure, you would see people with increasing levels of power, minus the charisma of Fidel Castro. And they would have popular support. Cuba will continue to have very solid, social benefits for the population, leading the developing world in terms of social statistics … The political system will remain similar — perhaps with more debate within a one-party structure.”
Dr. Brown wonders if the Revolution’s fervour can be sustained in the future. He’s also skeptical of the political alternative. “I don’t know how you can get an American-styled democracy and still have the extraordinary achievements that socialism has brought for the people,” he says. “It would be a tremendous tragedy if we lost — even with its warts — the Cuban achievement. We would be lesser for it as a global community.”
Billed as the ‘blind romantics’ by their opposition, many ideologues view the existing system as a near-perfect paradigm. Many others, like Cuban-American organizations based in Miami, deem the Cuban Revolution as the “Dark Beast.” But a disenfranchised Raphael belongs to a third group of political thinkers mainly from Mexico and Spain. The so-called Mexican Group, spearheaded by notorious young scholars Rafael Rojas, Cecilia Bodes and the late Jesus Diaz, sees the Revolution as simply a historical process that’s transformed Cuban society — in many ways — for the better, but in others ways, for worse. The group envisions a democratic state in which the decision-making process is not confined to a single “political player,” and where Cubans can speak for themselves and not through their government. This process, according to Raphael, must be a soft, transitional one lead by the Cuban Communist Party, itself.
“I wouldn’t want to be in Cuba right now,” Raphael admits. “No one really knows what’s going to happen in the future, but the way the system is going now, it’s going to get harder for Cubans before it gets better.”
In the capital city’s Vedado District, the street life is anything but dreary. The smell of rum, fried plantains and peppered fillet trounces the exhaust-filled air. By night, the barrios are afire, pulsating and reverberating. No whispers of a counter-Revolution here, rather chatter over steamy Afro-Latin themes and generic rumbas, mambos and cha-chas.
Along the avenidas, older gentleman trade barbs over a game of dominos. Around every other corner: impromptu, clamorous block parties and impoverished rhapsody. With virtually ‘next to nil,’ Cubans get on with things. They get by.
Demons and Drugs
Treating mental illness in Bermuda is still a ‘Catch 22′ situation. Although mental health professionals try to prescribe the best medication for their patients, the side effects of many drugs are often impairing — sometimes even devastating — to people’s daily lives. It can leave some individuals questioning what’s worse for them — the disease or the cure.
By KEVIN SPURGAITIS
Originally published in the Bermuda Sun, October 2000
HAMILTON, Bermuda — There is a knock at the front door, but Carol won’t answer. Representatives from St. Brendan’s Hospital want to treat Carol with the psychiatric medication she’s refused for weeks. Carol just wants to be left alone. While awaiting to plead her case before the hospital’s review board, she is disturbed by the prospect of being admitted back to St.Brendan’s for further treatment. So Carol stays put, creating a stalemate with the nurses and doctor on her doorstep. “I’m aware of what I’m doing, what is reality and what is not,” she cries aloud.
Carol has bipolar disorder — or manic depression. The illness leaves sufferers navigating the depths of depression and the intense highs of mania. When left untreated, moods continue to swing from one extreme to another. Symptoms of the manic phase include restlessness, reckless behaviour and grandiose delusions. Tell-tale signs of the illness during the depressed phase are intense despair, a loss of appetite and possible thoughts of suicide.
Because of her mental illness, Carol has been admitted four times to St. Brendan’s for as long as a month each time. Her last visit was in August after a relapse late summer. The 32-year-old single mother has been on trial leave from the hospital for the past seven years, only required to attend monthly clinical appointments and undergo mandatory medical treatment.
Mental illnesses are one of the most common conditions harming people’s health today. They affect one in five adults, according to the American Psychiatric Association (APA). Depression, post-traumatic stress disorder and schizophrenia are the most common mental illnesses on the island, the hospital says. There are over 600 patients treated by St. Brendan’s — the vast majority being voluntary outpatients.
Carol’s first vision appeared in 1993 in her Southampton home. She can close her eyes and vividly see both demonic and angelic images — those she only read about in the Bible’s Book of Revelation. When she opens them, however, they are still eerily present in the room, she maintains. Carol describes later experiences as being a visual, oral and physical sensation. Not only can she see things but hear them sing and feel them gently tap her shoulder, she explains. “It’s a strange feeling, they don’t seem real, but they are.”
She recounts the presence of hovering shadows with faded, pale faces, as well as glowing, gold feet stamped across the ceiling. “… Tons of them, just lighting up the place.” She sometimes feels as though she’s dreaming, but is later convinced her sightings are palpable. She used to become frantic, telling close family members all about it. Her episodes have led to repeated calls to St.Brendan’s by her mother. Here, unsightly apparitions are superceded by the many faces of doctors and nurses peering down at her — equally distressing, according to Carol.
“I believe in such things, although a lot of people don’t. The Bible talks about them, it’s not me making it up.”
Sitting in her one-bedroom apartment, Carol flips through a stack of old photographs, snapshots of those “happier times” with family, close friends and former partners. But she shamefully points out her weight gain in the photos taken after her diagnosis. Her metamorphosis from a slim-figured, lively woman to a slightly heavier, lethargic thirty-something is still frustrating, Carol says.
“I just want to go on with my life and get off of it,” she says of the medication that’s created persistent pains in her head and chest.
The most common side-effects of anti-depressant and anti-psychotic treatment, according to the APA, include decreased muscle control and constant drowsiness, as well as periodic nausea and headaches. In addition, Carol’s reflexes and sense of smell are not as strong as they should be. She also oversleeps, trying desperately to stay up at 7:30 a.m. only to fall back into a slumber until early afternoon. “It’s making me worse, I can’t even function. I can’t even wake up and start my day. I feel sleepy and drowsy. I can’t even brush my teeth as fast as I want.” She maintains she wasn’t always like this.
Carol’s disorder means a steady regiment of such pills. Because manic depression and schizophrenia usually require ongoing inter-muscular shots and oral tablets, St. Brendan’s has treated Carol longer than the average 12-month therapeutic period. “And they say I have to take this medication for the rest of my life,” she cries. “I know it’s the medicine, because I feel entirely different when I’m on it. I cant even move, I’m not even a real person.”
The ill effects of Carol’s medication have resulted in her dismissal from two retail positions, she alleges. Her sluggish demeanor and uncontrollable, bodily movement eventually took its toll on Carol — and her employers’ patience. The experience propelled her desire to “get off of the drugs.” While off medication, she’s held down secretarial duties and courier responsibilities at a Hamilton employment agency.
Her co-worker and supervisor, Mary-Anne Scott, has been supportive of Carol since her arrival last November. Carol is very good in her present position, always presenting an “ear to ear” smile to everyone she encounters, says Ms. Scott. “Those people are hard to find.” Since starting with the company, Carol has promptly arrived to work every morning. But despite Carol’s diligence on the job and inherent good nature, her real ambition is easily discerned by those around her. It’s obvious it’s not what she wants to be doing, according to Ms. Scott. “Her sales clerk job was one of the most important jobs of her life. She felt she was making a positive contribution with respect to her work life,” she says. “She is a person you can like very easily because she is very sweet and child-like in her thinking. You have a tendency of wanting to be protective of her.”
The confrontation in Carol’s home continues. “We just want to help you,” the hospital’s psychiatric team pleas. “No, just leave me alone,” the patient cries back. According to the hospital, protocol carried out by the outpatient service is one of easy-tempered care and in non-compliant cases a call to police. For Carol, the prospect of forcible detention at St. Brendan’s appears far worse than adherence to the hospital’s order. Because she doesn’t want to jeopardize her upcoming appeal, she finally concedes to take her medicine on the spot.
According to Dr. Harrison, the hospital’s “hands are tied” when a patient does not co-operate with them. “When people don’t have insight into their condition, they may feel as though they don’t need treatment. Sometimes, the hospital has to implement the Mental Health Act to ensure they receive the treatment they need.” He says the hospital holds regular reviews of its practice.
The Mental Health Tribunal, overseen by members of the Ministry of Health, is present to assess applications to discontinue therapy. In addition, an ombudsman with the patient’s advocacy service further investigates claims a patient or family may have concerning treatment. Dr. Harrison says he doesn’t look at the tribunal as an adversarial process; patients uncomfortable with their treatment can trust their case managers, doctors, nurses and the tribunal itself. “People will listen to patients,” Dr. Harrison asserts. The very thought of people abandoning therapy alarms Gerald Caisey, St. Brendan’s mental health program manager.
He says some people may require on-going examinations and subsequent treatment. He compares mental illness sufferers to diabetics. The stabilization of the disorder requires constant medication in order to maintain a person’s wellness. “It essentially depends on the severity of the symptoms the illness. You have to have ongoing affinity with the mental health services. Overtime, you’ll get people functioning to a point where they can effectively pursue ordinary interests and opportunities.”
Additional medication, he points out, can be prescribed and administered to counteract side-effects of anti-psychotic medication. “Once they get back onto their feet, they decide they don’t need it anymore. But another life event or trauma may take place making them susceptible to another psychotic episode.”
Carol’s mother, Alice, worries what will happen to her daughter if she elects to go off her medication again. She’s seen the before and after portraits. She painfully recalls her daughter’s hallucinatory episodes before therapy, and her bouts with midday sedation and muscle spasms during treatment — but worse, Carol’s withdrawal from therapeutic medicine altogether. After abstaining from prescription drugs for almost a year, her daughter was observed having severe insomnia, irritability and hyperactivity — symptoms associated with the discontinuation of most psychiatric medicine, according to the APA.
A history of mental illness has troubled Alice’s side of the family. Her father suffered from a depressive disorder. Her son has been treated for being delusional in the past. She now contends with an emotionally disturbed daughter who zealously reads the Bible in order “keep the demons away.” Carol relies on religion as opposed to science in order to get well, according to her mother. “She thinks she doesn’t need medicine, but she does. She is in denial. She doesn’t want to admit she’s gotten sick again and needs to go on medication,” charges Alice. Her struggle with her daughter has deteriorated from heart-filled pleas to routine reminders of her drug intake. However, Alice sympathizes with Carol’s aversion to almost all the drugs prescribed to her. And she admits she would like the hospital to try something else. “They really should.”
Steadfast in her liberation from treatment, Carol maintains the next time she “see things,” she will keep it to herself. “Why even bother if no one believes me,” she asks. This attitude adopted by some patients concerns Dr. Harrison. “If people are experiencing symptoms that are distressing them, they should seek professional help and be as honest as they can be about the symptoms. That’s the only way the people in the mental health profession are going to be able to help them,” Dr. Harrison explains. “They need to communicate exactly what they are experiencing.”
The benefits and disadvantages of psychiatric therapy have left both parties with conflicting ideas of what’s good for Carol. She argues that she’s no longer afraid of haunting visions. She fears another wrap on the door from the hospital’s community check-up group. She neither wants to be treated with anti-psychotic medication or to be escorted back to St. Brendan’s. Rather, Carol longs to re-integrate into a world free of drug-induced sedation and crippling side effects. But that fate is in the hands of the Mental Health Tribunal.
“They tell me (the drugs) are for my own good, but I don’t think so,” she says rather defiantly. “You know, I’m perfectly fine now. I just have to convince them that I’m better.”
The Killing Fields
Physician protests 800 deaths in the Philippines
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, April 2007
The morning of July 31, 2006, began like any other for Dr. Chandu Claver. In Tabuk, 315 km north of the Philippines capital, Manila, Claver and his wife, Alyce, drove their daughter, Cassandra, to school in their family Land Cruiser. The threesome journeyed across familiar terrain: steep slopes; sprawling, green valleys; Helen’s Farm and Chico Diversion Dam. Then down to the lower barangays, and through the municipality’s commercial center, passing street jewelers, loomweavers and rattan basket makers. Nearing the end of their journey, the family drove by the much-loved landmarks of Tuga Catholic and St. Joseph Churches. Their morning couldn’t have been more usual and benign.
But suddenly, two vans — one dark-coloured and the other white — appeared from the sides of the highway, a mere 500 metres from a national police camp. “After cutting off my vehicle on the thoroughfare, two masked men poured out of the vans and started shooting at my family with high-powered rifles,” Claver says softly and matter-of-factly. “They just kept firing and firing at us through the front and side windows. . . . Glass and ejected shell casings were everywhere. . . . All I could do was shout for everyone to duck below the dashboard and seats until it was all over.”
Later that morning, paramedics rushed the family to the Kalinga Provincial Hospital, where Claver’s wife succumbed to 26 gunshot wounds. His seven-year-old daughter only suffered a scratch on her head but was traumatized by the attack. Claver, meanwhile, was left with a shattered arm and a “life in a million little pieces.”
A surgeon and family physician from an indigenous tribe in the Philippines’ Cordillera region, Claver has been described as a “doctor of the people.” Since 1984, the 49-year-old has practised medicine in remote barrios in the heavily militarized provinces of Kalinga and Apayao. There, he helped to set up community-based health programs here, often in the midst of ongoing clashes between insurgents and the country’s military. “I suddenly came face-to-face with civilian deaths and injuries, as well as the evacuation of whole villages and its health consequences,” he says. Eventually, the physician took up human rights work, which he believes made him and his family targets for death squads.
Late last winter, Claver brought his campaign for justice to Canada as part of a five-member delegation from the Philippines sponsored by justice organizations and churches, including The United Church of Canada. The delegation urged the Canadian and U.S. governments, as well as the UN Human Rights Commission to “strongly and unequivocally condemn extra-judicial executions of dissenters in the Philippines,” which they say have claimed 835 lives since 2001. Among those murdered are human rights workers, lawyers, journalists, priests, ministers, lay people and Roman Catholic Bishop Alberto Ramento.
“We are looking for justice for our dead relatives,” Claver says. “We’re laying this down on the doorstep of my country’s presidential palace. As the commander in chief, Philippine President Gloria Macapagal-Arroyo has accountability in these cases.”
The Philippines has long been in a political tsunami. Even the return of democracy in 1986 was hog-tied by massive national debt, government corruption, communist insurgency and a Muslim separatist movement. In January 2001, Arroyo’s own succession to the presidency was tainted with allegations of election rigging and double-dealing, along with violent protest. In response, she had dissidents and prominent political leaders arrested without warrants, staving off the first in a series of coup d’états — the most recent in March. The Arroyo administration, promising to “build a strong republic,” now seems set on toughening up the bureaucracy, improving the economy, lowering crime rates and intensifying counter-terrorism efforts.
Because of their experience with counter-insurgency and anti-secessionist campaigns — and their close relationship with the U.S. military — the Armed Forces of the Philippines (AFP) is considered one of the strongest, battle-hardened armies in the world. It has declared an all-out-war against the New People’s Army, the armed wing of the Communist Party of the Philippines. The AFP maintains that many of the recent killings were part of an “internal purge” by communist guerrillas, who control parts of the archipelago nation.
In the first six months of 2006, at least 51 people were executed, compared to the 66 cited by Amnesty International during all of 2005. The shootings have rarely led to arrests, though. As such, Amnesty believes that the attacks are not random murders but a “politically motivated pattern of killings,” and says members of the security forces may have been “directly involved in the killings or else have tolerated, acquiesced to or been complicit in them.”
In February, UN fact-finder Philip Alston concurred, assailing the AFP for its role in supporting, training and arming paramilitary groups. The military is dedicated to the protection of the nation, he wrote in his report, but it has to put a stop to the killings. Alston and his team members also met with Dr. Chandu Claver, who told them that an effective witness protection program would help end the cycle of executions. “People are afraid to come forward to report killings. Everyone can be a target. There continues to be a lot of fear,” he said during his visit to Toronto.
Fifteen of the 835 people executed in the country since 2001 were members of the United Church of Christ in the Philippines, according to Bishop Eliezer Pascua, the general secretary of the church and member of the Filipino delegation to Canada. More than half of them, he says, “were very close to my heart, not only as my pastors but also as my friends.”
After seeing their bodies riddled with bullets, mutilated and disfigured, Pascua became an outspoken advocate for change in his homeland. “Many international organizations are finding that this could not have continued without the gross tolerance from the Arroyo government,” he says. “The president waited for 800 people to be killed before saying she would seriously look into this.”
Last summer, Arroyo set up a commission of inquiry, headed by former Supreme Court Justice Jose Melo, to investigate the killings and make legislative proposals. Pledging to “break this cycle of violence once and for all,” she stated, “I have directed [the Melo Commission] to leave no stone unturned in their pursuit of justice . . . the victims and their families deserve justice to be served.”
Arroyo later lauded the Supreme Court for creating special courts that will deal exclusively with unexplained killings. In the document that authorized some 99 new tribunals, the Supreme Court said that “the political affiliation of the victim, the method of attack and the involvement of state agents” would be the benchmarks for identifying a political killing.
But with the military watching both human rights groups and rebels through the same gun sights, and with the government’s “no permit, no rally” policy quelling protests before general elections, the United Church’s partners in the Philippines say they still run the risk of being falsely detained — or murdered.
Claver says he still receives mysterious text messages warning him to watch out for himself and his family. He remains in constant hiding, surreptitiously moving from safe house to safe house. He sees his three young daughters, who are staying with relatives, only twice a month.
Recently, he was asked if he regretted the fallout on his family from his human rights work. There was a steely edge to his answer: “Everyone does what he or she has to do. Some unexpected tragedy might befall us but these are not predetermined.”
Pressuring the authorities for investigations is a way for a generation of Filipinos to render some form of justice and put the past behind them. As Claver wrote in an open letter following his wife’s murder, “Many lives have been taken and many more are in danger. But let us not wallow in despair or be paralyzed with fear. Let not the death of Alyce, and the others before her, be in vain.”
Son of a Preacher Man
The prodigal child of two televangelists has returned to help rebrand Christianity in the United States
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, September 2008
NEW YORK CITY — Jay Bakker is cheerful and unfailingly polite, sitting inside the Blackbird Parlour, a Greek-inflected cafe on the north side of Brooklyn. Here, eccentric patrons sit around as less-known songs of heartache permeate the room. The tables are their own sort of purgatory, covered with tiny plates of grilled manouri cheese and leftover loose-leaf teas. But that’s just fine with Bakker. The 32-year-old takes a certain liking to this hodgepodge of strangeness. In fact, he says moving to New York City’s fringe two years ago was one of the best decisions he has ever made. “Although, it’s been a challenge,” he admits. “First, I grew up in a bubble until I was about 11. Then I got so used to being in the South, where everyone knows who Jesus is. But I come out here and you know, I might as well believe in unicorns.”
Born Jamie Charles Bakker in Charlotte, N.C., he was exposed in adolescence to the dark underbelly of organized religion in the United States. His parents, enterprising televangelists Jim Bakker and Tammy Faye Messner, pastored what was then the largest place of worship in the country until a succession of scandals rocked their ministry. The fallout drove Bakker to abuse drugs and alcohol — and far away from America’s premier megachurch. Today, he’s reconciled with his parents and past. He believes the experience has bettered him as a person of faith and led him to his own — rather unorthodox — ministry today. In New York City, he is pastor of the increasingly popular Revolution Church, “a place of worship for people who have given up on church.” As a self-proclaimed punk, he is challenging and, in fact, helping to redefine Christianity in the United States. He is able to minister to a disillusioned subculture with earthly authenticity.
Bakker’s own aesthetic — like his upbringing — is out of the ordinary. He sports a silver ring that protrudes through his lower lip and black discs that stretch both ear lobes. He wears a cut-off T-shirt, revealing arms that are tattooed to the wrists. Mostly, his body decorations are made up of Christian iconography: a tall ship with the words, “Heaven Bound;” a sacred heart with the words, “Blameless Sinner;” and a microphone with the words, “Preacher Man.” The phrase, “Help me lord” is indelibly spelled out on his knuckles too. But he’s most fond of the tattoo on his chest: a lion’s head embedded on the front of a freight train, with the words, “Drive on, LaValley.” It’s a tribute to his mother, who was born Tammy Faye LaValley and died in July 2007 at age 65 of colon and lung cancer.
Messner and her first husband Jim Bakker, a former Assemblies of God minister, are most remembered for hosting The PTL (Praise the Lord) Club, a popular evangelical Christian television program. By the early 1980s, the two had built the third most successful theme park in the country. Heritage USA in Fort Mill, S.C., along with the Bakkers’ PTL mission, survived on the donations of viewers, which reportedly exceeded $1 million a week. The New Yorker’s Frances FitzGerald once wrote: “[The Bakkers] epitomized the excesses of the 1980s; the greed, the love of glitz, and the shamelessness; which in their case was so pure as to almost amount to a kind of innocence.” By the end of the decade, a sex scandal forced Jim Bakker to resign from his ministry. Subsequent revelations of accounting fraud led to his five-year imprisonment. His early parole was partly the result of a massive letter-writing campaign spearhead by Jay.
Bakker’s portrait of his father is sympathetic and, at times, even worshipful. In his 2001 book, Son of a Preacher Man, he writes: “Yes, my father did things wrong. . . . The real tragedy, though — the scandal — is that his ministry got too big too fast and he compromised his methods in order to keep the place running.” But the New York pastor has never felt like his father’s keeper — not really. “Look, he’s got a lot of good qualities and some not-so great qualities because of how he was raised,” he says. “He still struggles with things like legalism and grace after renouncing his teachings on prosperity theology. But I believe in my dad, and I think he’s a good man.”
After witnessing his father go to prison and his parents’ ostracism by the religious community, the preacher’s kid says he walked “in the shadows,” saw many “dark things” and met many “dark people.” Bakker quickly became acquainted with things like ineptitude and self-loathing. He got depressed. He partied every weekend, diving headlong into Jack Daniels, marijuana and LSD. Of that period, he says: “I never felt like I was Christian enough, so that made me give up on everything else. My self-condemnation got to the point where I couldn’t look in the mirror anymore. I just wanted to kill the pain and feel good about myself again.”
Toward the end of his teenage years, he sobered up, took a job at the Gap and re-examined his Christian faith. Bakker, along with friends Kelli Miller and Mike Walls, started Revolution Church in Phoenix in 1994. They embraced a whole subculture of people who had been traditionally ignored by U.S. churches: punks, skateboarders and street kids — the very people who embraced Bakker during his darkest days. Inside a donated house, they held services that featured bands, disc jockeys and progressive guest speakers. The trio also hosted potluck dinners and skateboard jams. It was a chance for young people to hang out and listen to a message of grace “on their own terms,” Bakker says.
In 1998, a church in Atlanta offered to help build a second Revolution church in the city’s east end. It was a relationship that lasted five years. Once Bakker and fellow pastors became financially independent, they moved church services to a multistory rock club called The Masquerade, and then to a barroom called The Earl. Not long after, they created two more branches of the church in Charlotte and New York City — all supported by donations and proceeds from online merchandise: the kind of edgy posters, stickers and T-shirts sold at alternative music festivals.
It’s a sweltering Saturday in August. Down at the Rumblers Vintage Car Show, under the Brooklyn-Queens Expressway, Bakker is in awe of all the greaser and rockabilly types with their fine, unchecked arrogance. Men sport gas station work shirts and threadbare jeans, while women wear either tight-fitting floral dresses or tank tops with leopard-accented capris — their looked inspired by bad-girl pinup models of the 1950s. Bakker doesn’t even own or drive a car these days. He can’t tell you much about the inside of his favourite car, a streamlined 1949 Ford Mercury. “It’s just that The Rumblers is the greatest show on Earth,” he enthuses. “Hot rods and rat rods — they are just so beautiful. There are only a few true souls out there who get it.”
However singular his tastes, Bakker remains conservative in some ways. When you’re raised in literalist religion — in guilt — it’s hard to let go of the feeling that you have to earn God’s approval. “I believe Jesus walked the Earth, was crucified and rose in three days among other things, but I don’t think the Bible is infallible,” he says. “Other ministers have their minds already made up. They don’t want to discuss other theologies. And that’s just crazy to me. Your faith isn’t alive and it doesn’t grow this way.”
“Religion kills,” Revolution Church once loudly proclaimed. It was Bakker’s and his co-pastors’ way of saying, “Hey, we Christians have messed up and we’re sorry. If you want to give us a second chance without the bull shit, come visit us.” While that’s not the church’s official motto, Bakker argues, “it was a good thing to say publicly at the time. It started a lot of conversation. Of course, some people just thought it was a cool thing to have printed on a T-shirt.”
In an open letter to the media, Bakker once asked, “What the hell happened to Christianity? Where did we go wrong? How was Christianity co-opted by a political party? Why are Christians supporting laws that force others to live by their standards?” The answers to these questions are integral to the survival of Christianity, he believes. “People see this Made-in-America Christianity and say to themselves, ‘Why would I want to be a part of that?’ They are turned off by particular Christians and eventually the religion altogether.”
Bakker’s philosophy of inclusiveness extends to gay, lesbian, bisexual and transgender people. He actively supports their right to marry. But his “gay is okay” declaration came only a couple of years ago. First, one of his friends came out and then a former camp counsellor. Some members of his congregation followed. “I was like, this is so strange. All these people, who have been important parts of my life, are all coming out and are either being asked to leave their church or choosing to have nothing to do with their church. And I just wasn’t sure where I stood. Then I thought, how can I condemn these people for their love of another?” Bakker started looking deeper into the Bible and attended a gay-affirming church. That’s when it all came together for him, he says.
However, becoming a gay-affirming pastor wasn’t easy. People accused him of being a people-pleaser and taking the broad road. Some of his appearances were cancelled and a few people quit the Revolution Church in Atlanta. Says Bakker: “Gay marriage is a civil rights issue. All these people are being denied their rights. To me, the churches have so much power in that area that even liberal politicians like Barack Obama won’t say anything definitively about it. And that’s just really sad.”
It’s a late-summer Sunday afternoon. Bakker is in the back of Pete’s Candy Store, a hipster bar on the north side of Brooklyn. Surrounded by classic marquee lighting, he or his co-pastor Rev. Vince Anderson preach every weekend. Perched on a high stool, holding his leather-bound Bible, Bakker surveys the dimly lit room and adjoining hallway, where about 60 people have gathered. Most are in their 20s and 30s. At times more of an emcee than a preacher, he speaks without rhetorical flourish, making references to popular culture as well as the New Testament. “There’s really no problem in trying to live out a holy life,” he proclaims to the crowd. “The problem is when you leave out compassion. When you forget to love others. Forget to care about them.”
Occasionally, he loses his way in the middle of sentences because he has a mild form of dyslexia. But when he mistakes the word “emphasize” for “empathize,” he finds that Revolution Church members are usually forgiving. In fact, they seem to delight in his down-to-earth, slightly self-mocking language — his unassertive manner.
Granted, some attendees just want to see the prodigal son of two disgraced televangelists. But most yearn to be a part of an ecclesial community free from religious dogma. When Anne Ammons, 27, first stepped foot in Pete’s Candy Store, she thought, “Well, this is way cool.” “It’s open and inviting, and nothing like the evangelical church I grew up in,” she says. “People aren’t used to a pastor standing up and telling everyone about their life and how they messed up. It makes people feel more at ease.” Ammon’s husband, Chris, who grew up in a conservative Presbyterian denomination in Atlanta, has attended the New York City church since it opened its doors. “Here, it’s a little more organic,” the 29-year-old says. “Jay interprets the Bible in a way that appeals to me. Revolution Church, being held at the back of a bar, also makes people feel more comfortable. . . . That, and there’s $2 draft beer on Sundays.”
Toward the end of his sermon, Bakker takes notice of the bartender’s not-so-subtle cues. “God’s love, grace and compassion. At the end of the day, that’s what we’re trying to preach here,” the young pastor says hurriedly. “Alright everybody, that’s it. Let’s head on out and perhaps talk a bit longer outside. It’s hot as hell in here anyway, and we’ve got to open up the doors now and let the open-mic people in.”
After Sunday services, on the back patio of Pete’s Candy Store, Bakker takes a few long drags from his cigarette. He appears the worse for wear. Still, his spirits are high sitting in this smoky, kitschy oasis, surrounded by a mix of folks in skinny jeans and nondescript T-shirts. Still overheard are sometimes-sad rock songs and the below-ground language of disaffection — precisely the thing Bakker has a chance to rail against in his come-as-you-are-whoever-you-are ministry.
Sure, there’s a small part of him that would love to be the next Billy Graham, the popular evangelist who served as spiritual adviser to U.S. presidents. Then again, he’s seen how having that kind of power can refract one’s vision. Bakker, like many others, has bore witness to many big churches and even bigger scandals, including those of his own family.
“We encounter a lot of people who say, ‘Revolution Church is my last chance before I completely give up on God,” he says. “That’s super humbling and tells me that we’re in the position to do something good here. . . . It makes me think to myself, hey, maybe this is what the postmodern church is supposed to look like.”
Could two-tier health care today lead to greater ills tomorrow?
By KEVIN SPURGAITIS
Originally published in the UC Observer, February 2009
In the early morning hours last July, Cathy Cormier felt the worst abdominal pain of her life — the result of a large gallstone lodged in her common bile duct. In timely fashion, she received a diagnosis and medical treatment at the Halifax Infirmary site of the Capital District Health Authority. But the real problem began when Cormier, who is a nurse herself, needed something that is in short supply in Canadian hospitals these days: an infirmary bed. For two days, Cormier’s was a gurney pushed against the check-in desk of the emergency ward, where according to the Globe and Mail, she and the others were expected to rest until more hospital beds opened up. “Nobody pays attention to you once you are in the hall,” Cormier, 50, sharply told the newspaper upon her release from the hospital. “You are completely on your own.”
In a more shocking case, a homeless man and double amputee died in September after sitting 34 hours in a Winnipeg emergency room. Brian Sinclair’s death was the cause a preventable bladder and abdominal infection, the Winnipeg Free Press reported. All it would have taken to save the 45-year-old’s life was a simple change of his catheter and, of course, antibiotics. But the staff at Winnipeg’s Health Sciences Centre hospital was unable to treat him and, by the time his body was found in the waiting room, it was already stiff from rigor mortis.
The queues for health care across the country have been a common, alarming sight. Access to family doctors and emergency services has worsened over the years partly due to shortages of doctors and space. As a result, Canadians’ faith in a publicly funded health-care system — best known as medicare —has been rudely shaken, leading some to tout a mixed public-private system.
Boosters of this two-tier system, which already exists due to the upspring of specialty clinics, say that increased competition from the private sector would be a cure-all to wait times and would force the public system to be more efficient. It’s the kind of talk that troubles medicare advocates, who view private, for-profit clinics as a threat to the Canadian health system itself. They argue that the outright privatization of health services would actually draw many of the best doctors out of the public system and drive up the wages of medical professionals. They insist it’s not telling of a Just Society that’s supposed to treat sick people equally. But above all else, they say that the current system is already on the mend — so why even try to dismantle it?
Every year, Canadians make 14 million visits to emergency departments, according to Statistics Canada. They frequently call on their family doctors too. In Pollara’s 10th annual Health Care in Canada study, the most comprehensive survey of Canadians’ attitudes on medicare, only 57 percent of respondents recently said that they were receiving quality health care. More than two-thirds agreed that the health-care system needs major repairs or a complete overhaul. However, the national poll also revealed Canadians’ deep conflict about the role of the private sector in health care.
Like it or not, there are now 89 private, for-profit clinics doing surgery, MRIs and CT scans across the country, particularly in British Columbia and Quebec. These “boutique” physician clinics operate in the face of the Canada Health Act (CHA), which ensures universal coverage for medically necessary hospital and physician services, and prohibits private, for-profit health care practices.
Conservative think tanks, such as the Fraser Institute, clearly like the idea. The organization has dismissed the current system as a “single-payer health insurance monopoly” — one that doesn’t cover many advanced medical treatments. It argues that people should be free to buy private health insurance, as they do in countries such as Sweden and Australia.
In 2005, the Canadian Medical Association (CMA), the country’s main lobby group for physicians, also adopted a motion supporting access to private-sector health services and private medical insurance in circumstances where patients cannot obtain timely access to care through the single-payer system. CMA’s new president, Dr. Robert Ouellet, has prescribed a mixed public and private health-care system. He told the Globe and Mail last summer that “Canadians must wake up to the key role private health care can play in relieving the country’s ailing public system.”
Ouellet, who runs several private radiology clinics in Quebec, argues that the Canadian health-care costs have quadrupled in the last 20 years; the country’s doctor-to-patient ratio has plummeted; and by 2011, the number of Canadians over 80 will have jumped by 43 percent. In the face of a shortage of operating rooms, he questions the banning of surgeons, who provide 90 percent of their services in a hospital, from performing five to 10 percent of their surgeries in a private clinic.
Retired United Church minister Rev. Bill Jay, who is The United Church of Canada’s health expert, acknowledges that two-tier health care is already here but strongly urges “the need to carefully manage it.”
“Look, everyone can see the inefficiencies of the public system; we’ve all been caught in the aggravation of wait times,” says Jay, who between 2000 and 2008, carried out the church’s health-care advocacy through the Canadian Council of Churches’ Ecumenical Health Care Network, which he co-founded. “But the moment people start paying private premiums, they’re going to want to be exempted from paying for public health services. When doctors, nurses and technicians are poached by private clinics, more health-care practitioners will follow. It could have a siphoning effect.”
To boosters of health-care privatization, Jay puts its bluntly: “Look, you’re likely to scream for a social safety net when your parents begin to have health issues related to aging and they need expensive treatments for cancer and osteoporosis, or when, despite your own physical fitness, some unexpected thing like cancer befalls you.”
The United Church Moderator Rt. Rev. David Giuliano, who has spent the last couple of years undergoing cancer treatment, says “the more we move toward endorsing [private] care, it seems to increase the likelihood that those at the bottom end of the care system will get sub-standard treatment.”
It reminds Giuliano of the separate but equal schools for African Americans in the United States. “I don’t think anyone will tell you that those schools were funded in the same way Anglo-Saxon schools were,” he says. “I can’t imagine the Canadian health-care system won’t go in the same route if we insist that people with their pockets full of money can buy their way out of the system that is intended to serve everybody.”
He continues: “There’s no basis for an argument that rich people should be treated better than poor people in Christianity. From a theological starting point, those who are wealthy and have plenty of resources have a special call to those who don’t. True, we no longer live in a culture where that’s the basis of any argument, but as a church, we need to move out of that reality and lend our voice to the national conversation about health care.”
It’s been more than six years since former Saskatchewan premier Roy Romanow spoke out on Canada’s health care with the release of a wide-reaching report. His 47 recommendations — which included reorganizing family doctors into teams, computerizing health records and developing a national pharmacare program — were heralded as a blueprint for the 21st century. But up until now, little has been done to act on the report, critics say. Even Romanow, himself, has questioned what his 18-month, $15-million commission has accomplished. He told the Toronto Star that the CHA is “almost becoming a dead letter of the law.”
A major concern now is the “enforceability of the Canada Health Act,” according to Raisa Deber, a professor of health policy at the University of Toronto. “The law is essentially a floor, not a ceiling,” Deber says. “It says medically necessary services have to be paid for publicly, but it says nothing about how those services need to be delivered.”
She continues: “Your doctor does not work for the government. Your doctor is a small business entrepreneur who only bills the government. . . . When we’re talking about increased privatization of health care, I have doubts about a model that is based on the assumption that people are going to altruistic enough. Think about it, if I’m a venture capitalist in the field of medicine and I have this situation in which people are willing to buy their way to the front of the queue, why would I try to lower the number of people on my wait list?”
While the debate over Canada’ health-care system has carried on, the Conservatives have continued to implement the previous Liberal government’s 10-year $41.3 billion federal-provincial plan to strengthen health care. The federal government’s 2007 budget offered more than $600 million to provinces and territories to encourage them to implement patient wait times guarantees by 2010.
The Health Council of Canada (HCC), created by the 2003 First Ministers’ Accord on Health Care Renewal, has been closely monitoring the country’s progress in health-care reform. HCC interim chief John Abbott says “a number of accords, undoubtedly, are leading to some great things and there are reasons to celebrate.” In October, the council also endorsed the Conference Board of Canada’s report on Canada’s health performance, which gave the country a “B” ranking, placing the country 10th out of 16 countries in health performance. “Sustainability is now the goal to which we believe all of our government stakeholders aspire,” Abbott says. “And it is one that all Canadians will have to work collaboratively to achieve.”
United Church health expert Rev. Bill Jay agrees that much is now being done to reduce wait times for heart and cancer patients, as well as those needing hip and joint surgery, cataract operations or diagnostic tests. Jay continues to represent the church on the board of the Canadian Health Coalition, which aims to safeguard the legacy of the late Tommy Douglas, the Scottish-born Baptist minister who as leader of the Saskatchewan Co-operative Commonwealth Federation (CCF) and premier of Saskatchewan introduced universal public health care to Canada.
“[Today’s medicare] still fulfills the vision of its founders: that it would be there when we need it, irrespective of our ability to pay,” he says. “It’s still performing exceedingly well in terms providing necessary medical treatment across the country. . . . Whether you are paying no taxes as a person with a disability or a CEO of a prosperous firm, you have an equal chance of getting prompt treatment.”
But Jay admits that there is plenty of room for improvement, and that much more can be done to accommodate patients such as Cathy Cormier and Brian Sinclair.
“The prescription for Canada’s ailing health care is to fairly allocate existing resources to make sure that the CHA — and the public system as we know it — do not erode through double-dipping,” he says. “This really is an issue that affects all of us and not just the near-do-wells. It’s like the old adage from the Book of Corinthians, ‘If one member suffers, all members suffer together.’”
L’Arche Canada fosters social inclusion of people with developmental disabilities
By KEVIN SPURGAITIS
Originally published in the Catholic New Times, May 2006
Janet Munro is living longer — and significantly better — partly due to one thing: a shared life with community-care providers.
As a 44-year-old with Down syndrome, Janet finds she is most happy when volunteering with the L’Arche community for people with developmental disabilities. In particular, she enjoys performing with the Ontario-based dance troupe, Spirit Movers, and putting together information packets together twice weekly for parents whose children were also born with Down syndrome.
“I help with the mailings, make photocopies and work on the computer here,” Janet says softly, meticulously selecting every word. “People are very friendly and I really enjoy their company. I’ve made a lot of friends. . . But oh my goodness … It takes time to learn things. Sometimes I feel nervous and scared. Mostly, I feel happy, though.”
L’Arche is a spiritually based network of residential caregivers, made up of 130 communities in 30 countries, including Canada. The social justice paradigm, characterized by its workshops or day programs for people with developmental disabilities, sponsors a “community type” of living, rather than a medical or social service model of care.
L’Arche’s core members are people who have been diagnosed with developmental disabilities, such as autism, cerebral palsy (which may include an intellectual incapacity) and Down syndrome. Some members are wheelchair-bound. Some have communication impairments. Then there are those with behavioural and emotional difficulties. But whether they have physical or intellectual disabilities — mild or complex needs — all receive help from aides coping with the demands of their daily lives.
Today, there are more than one million Canadian children, youth and adults with intellectual disabilities, according to the Canadian Association for Community Living (CACL). In 1982, the Charter of Rights and Freedoms gave people with an intellectual disability the same status as every other Canadian. The 1980s also saw provinces and territories adopt human rights codes to help protect the rights of people with intellectual disabilites. Now, Ontario’s three remaining government-operated residences for adults with developmental disabilities are scheduled to close in the next two years. The January announcement followed last year’s court decision by Justice Charles Hackland, which acknowledged the government’s right under existing legislation to close provincial facilities. The ruling says that residents cannot be transferred into group homes or other community facilities without the consent of the individual or their family.
“We are absolutely thrilled about (the announced institutional closures),” says John Guido, the regional coordinator for L’Arche Ontario. “The quality of life for people living in an institution is as low as it can be. Today, it is more of a human place, but people are still isolated from society with little or no choice about what they’re doing in their lives.”
Describing institutions as “warehouses of people with developmental disabilities” and “dumping grounds for unwanted people,” Guido argues that not-so-violent offenders can easily find themselves in segregated wards, based on the whim of a single staff member. Rates of violence and abuse against people with disabilities, especially women, are also among the highest of any group in Canada both inside and outside institutions, critics of deinstitutionalization argue.
L’Arche, however, is a surrogate of sorts. Says Guido: “We provide a certain level of structure that keeps people safe. We give them a chance to be a part of something larger, instead of living depressed, heavily monitored lives.”
Philosopher Jean Vanier is the founder of the international movement of L’Arche communities. For his humanitarian work and social vision, Vanier was awarded the Order of Canada, the Legion of Honour (France) and the Pope Paul VI International Prize. Today, he still lives in the first L’Arche community in France, which he continues to exalt in his books. “ …When we let go of our usual categories and the productivity-oriented measuring systems so common in our culture, we can be surprised by the abilities that people with developmental disabilities often reveal — their keen sensitivity to interpersonal situations, the depth of their empathy, their willingness to overlook and to forgive, their faithfulness, their acceptance of difference, their originality, their capacity to be present and to cut through pretense, their resilience, the creativity of what they produce, and their gift for celebration. People with disabilities have taught me what it means to be human and they are leading me into a new vision of society, a more human society.”
In 1974, L’Arche Daybreak in Richmond Hill, Ont. erected its first house off the main property in downtown Toronto. Fives homes and one independent living apartment now constitute L’Arche Toronto. All residences are situated in neighborhoods that reflect the city’s “cultural diversity and rich tapestry.” In each community, four international assistants, routinely supervised by a house leader, service the administrative and special needs of four core members. Assistance is required with getting up in the morning, personal hygiene, dressing, feeding, communicating, housekeeping, laundry, informal health monitoring and going to bed. Emotionally and psychologically propping up L’Arche’s residents, informal caregivers get very little respite.
According to Amy DeMoulin, community leader of L’Arche Toronto, the independence of core members is less important than their ability to be part of society. The hallmarks of L’Arche homes are residents’ zeal and unbridled spirit. Their own pop and impressionist art is proudly hung in already vibrant interiors. At one house, a technicolour field of plush toys can be found out front. At another, taking out the garbage is pageantry, with clamorous bands marching out the front door to tunes like Dick Dyson’s “I Work In The Daytime (She Works At Night).”
“L’Arche is an environment where you can become who you are at your core,” says DeMoulin. “We welcome people for as long as we’re able to provide the support that they need. For many people, that means a lifetime. However, there have been people that have come here and have chosen to leave. That’s all part of the freedom we want people to have.”
Partially funded by Ontario’s Ministry of Community and Social Services, L’Arche Toronto is incorporated as a not-for-profit organization like other communities across the country. Additional monies are raised through its fundraising wing, the L’Arche Canada Foundation. The Toronto chapter also invites local churches to participate. On Monday evenings, core members and assistants come together at the Gathering Place, affectionately known as the GP. There, they worship and celebrate as a community. But though it recognizes the spiritual and religious needs and aspirations of its members, it also respects those with no affiliation, Demoulin says.
In Toronto, assistants and work support coordinators oversee core members in their work and volunteer placements: coffee shops, grocery stores, cosmetics boutiques, printing companies, daycare centres and food banks, as well as several non-for-profit agencies. According to L’Arche Canada, people with developmental disabilities may not be the most “economically productive” in their placements. They may be at the bottom of a competitive society’s caste system. However, they reportedly have a “humanizing effect” on their employers and co-workers. As a result, the ‘turnover’ of core members with jobs has been low in the last five years, the organization says.
Stephen Richardson, 48, is one of the founding core members of L’Arche Daybreak’s Craft Studio. These days, he works three days a week at Toronto’s Lemon & Allspice Cookery, a food catering service a part of Common Grounds Co-operative, which supports workers with intellectual difficulties. Even though he deals with a learning disability and other challenges, he identifies himself by who he is and what he does. Stephen is an artisan and pastry chef. He lives independently in a downtown apartment with assistance from L’Arche.
“Oh, I like cooking and I like baking cookies, brownies and date squares. I just made this thing called beef stroganoff,” Stephen says nonchalantly, sporting smeary ‘chef whites,’ an apron and trousers. “There are a lot of deliveries to be made here … There is no shortage of work.”
Taking pride in his work, he obsesses about late food orders and is picky about plates. “I usually cope with pressure very well. If we get busy, I know how to handle it. But if I start to feel too much pressure, I just sort of find something else to do.”
He continues, “I enjoy taking the bus to work. I like my boss; she is a nice person. Together, we make the big cookies and we sell a lot of them … I can do more here.”
L’Arche is aging, though. People with developmental disabilities, such as cerebral palsy and Down syndrome, are living longer partly because of their community-based care and partly because of the advancement of antibiotic medication. But now living into their 40s and 50s, those with congenital disorders are likely to experience early-onset Alzheimer’s disease. And despite cooperation between developmental service providers and care access centres, there are long waiting lists and a scarcity of support. Additional funding is needed for high-level, home-based medical procedures and even bathing, according to L’Arche Canada.
Guido says, “It’s a complicated reality for L’Arche now. Our whole culture has changed. We are becoming wiser in supporting people as they’re aging and dying … There’s a point when it is no longer viable for (L’Arche) to provide a certain level of care, when their needs are so high because of dementia, for example. It’s a choice we make like any other family.
“But L’Arche’s membership does not end when we stop giving services, when core members are moved to long-term care facilities … Instead of assistants setting goals with members, assistants are going to have to help core members let go of what they used to do.”
Perhaps it is a magnificent ideal, but not an impractical one, sources say of the revolutionary community. In the book, Enough Room For Joy: the Early Days of L’Arche, author and Jesuit priest Bill Clarke, SJ, writes that those who are “radically dependent on others” are never deprived of healthy relationships in L’Arche communities.
Guido admits his own life has been transformed by “true friendships” with people with a disability. He remains inspired by their natural simplicity, openness and affection.
“I’ve never seen people so well and strong and so resilient,” he says. “Many of them may have been imprisoned (in institutions) for years, because their families were unable to see them in another light. But they have been able to get through that to a place of maturity and capacity to be fruitful and life-giving to others. That should say a lot to people.”
Technologies to extend life are closer than you might imagine. So are the ethical and theological questions they raise.
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, July 2007
“I’m simply not afraid to die,” says a peevish Edra Ferguson, shifting in her wheelchair inside her studio apartment at Belmont House, a Toronto home for seniors. Having lived for a whole century leads to all sorts of biting exclamations. So does cataloguing the scores of people she has outlasted. A former Ontario court judge and recipient of the Queen’s Jubilee Medal, Ferguson can no longer conceal her 99 years. She is leathery skinned with thick, silver hair, and wears a threadbare housecoat, heavy sports socks and velcroed shoes. Her movements are also noticeably slower now and her speech meticulous. But she kept things upbeat for her 100th birthday, celebrated last August: just a few friends, her two children and niece — and pink, bubbly champagne. “Because champagne just isn’t champagne unless it’s pink,” Ferguson says with a throaty laugh that quickly gives way to a guffaw.
Eight years ago, Ellen Vincent also moved into Belmont House after giving up her home in Toronto following her husband’s death. Vincent is now surrounded by other Rosedale matrons and the usual geriatric trappings: fitness classes, yoga sessions, Sunday morning tea, early-evening bridge, shuffleboard and a nine-hole putting green. Once employed at a high-profile research firm, Vincent remains “busy as a bee,” participating in the retirement community’s many ‘activation’ programs.
“I’m in my ninety-third year of earthly life, and in that span of time, life hands you a tremendous number of difficulties,” says Vincent, who survived three heart attacks since September 2006. The second one put her out of her one-bedroom apartment and into Belmont’s long-term care facility. But even with her arteries hardened like peach stones, she remains in astoundingly high spirits. “Well, it was another hard move to make, let me tell ya. But you simply have to deal with what is put before you … Oh, I don’t know, it’s all part of life, I suppose.”
For centuries, scientists have puzzled over human aging. In recent years, their puzzlement has turned to excitement thanks to tantalizing developments in biotechnology that could make people like Edra Ferguson and Ellen Vincent more the rule rather than the exception. But the developments come laden with heavy ethical baggage. If the technology exists to prolong life, do we have an obligation to use it? Who gets to use it? Should it be used at all in an overpopulated, underfed world? For people of faith, the issues are as basic as whether humans even have the right to toy with the God-given order of things. Or does the God-given order of things include the capacity of humans to develop life-extending technologies?
Generally speaking, life spans can slightly increase with a good diet, exercise and avoidance of smoking. Physicians also prescribe nutritional supplements that contain antioxidant agents as anti-aging medicine. It’s a multibillion-dollar business that also includes hormone replacement therapy, which restores youthful levels of growth hormone, testosterone and estrogen. Though the widely recognized method of extending maximum life span is caloric restriction, known simply as CR. It has been shown to extend the life of almost every species on which it has been tested: rats, yeast and fruit flies. Then there’s the senior population of Okinawa, Japan. According to Okinawa Prefectural University College of Nursing, the city is home to some of the longest-living people on the planet. It boasts the highest ratio of centenarians in Japan — close to 50 people of every 100,000 in 2004. It’s said that Okinawa’s centenarians have managed to stay lean — and alive — by consuming about 1,800 calories per day (compared with about 2,500 calories in western societies). That means a steady diet of pork, tofu, purple sweet potato and jasmine tea.
However, the real causes of aging, according to other researchers, are the loss, deterioration and mutation of cells, as well as the overall decline of the immune system. Theoretically, the extension of life can also be achieved by reducing the rate of this aging damage, by the periodic repair or replacement of cells. A recent development in the field of life extension has been the work of biogerontologist Dr. Aubrey de Grey of Cambridge University. De Grey proposes that damage cells, tissues and organs be rejuvenated through advanced biotechnology.
“The first person to live to 1,000 might be 60 already,” claims de Grey. Born and educated in London, the self-described prolongevist leads the Senescence (SENS) project at the University of Cambridge. He is also the chairperson and chief science officer of the Virginia-based Methuselah Foundation, which promotes evidence-based interventions in the aging process. To this end, the foundation offers the multi-million dollar Methuselah Mouse Prize — or Mprize — to scientists able to dramatically extend the life spans of lab mice.
When he entered biogerontology, De Grey saw nothing wrong — nothing undignified — about death. What he hated was aging. Until very recently, anti-aging science was a real backwater within biology, he admits. But it is now considered the “granddaddy” of all sciences. “It’s the most important thing anyone will have ever achieved . . . When we get these (rejuvenation) therapies, we will no longer all get frail and decrepit and dependent as we get older, and eventually succumb to the innumerable, ghastly, progressive diseases of old age.”
He continues: “The various aspects of the biology of aging are now at a point where we are within range of putting them all together and actually implementing comprehensive, coherent interventions for the molecular changes that eventually kill us. This is something we should all be excited about because aging doesn’t just kill people, it kills them really horribly.”
According to De Grey, researchers have a 50-50 chance of developing the first round of comprehensive rejuvenation therapies within 25 years. Those therapies will be applied to those who are in their middle ages. It’ll buy them 30 years of time at first, but then those therapies will rapidly improved. But he concedes that scientists will never be able to render people’s bodies completely ageless. Like HIV/AIDS treatment, anti-aging methods are merely repair and maintenance work that will need to be applied periodically. “We will still die, of course — from crossing the road carelessly, being bitten by snakes and catching a new flu variant — but not in the drawn-out way in which most of us die at present.”
Prior to the 19th century, more than a quarter of those born expired before their first birthday, and many women succumbed to childbirth. French doctor Louis Pasteur, who highlighted the importance of hygiene and antibiotics, is credited as the person who has extended more lives by more years than anyone in history. Last century, average life expectancy skyrocketed by 57 percent, from about 49 years of age in 1901 to 77 years by century’s end. Canada, like most western nations, has experienced a dramatic shift in its population. Those over the age of 85 now comprise the fastest growing segment of the population, according to Statistics Canada.
De Grey compares anti-aging research to Pasteur’s. “From a theologically point of view, God put us here with the ability and desire to improve our world and give ourselves the best quality and quantity of life . . . I see absolutely no difference in developing a vaccine for people still in infancy and developing technology to save the lives of those who already lived a while. Old people deserve the very vest medical care like anybody else.”
A decline in mortality rates from various diseases is celebrated as the greatest of medical victories. So it’s not too far-fetched to say that the most important war conducted by modern medicine is that against death, according to Daniel Callahan, a leading bioethicist with The Hastings Center, in Garrison, NY. The not-for-profit research institute has explored emerging questions in medicine and biotechnology since 1969.
In his 2003 book, What Price Better Health, Callahan writes: “Unless we are over-burdened with pain and suffering, there is not much good that can be said about death for individual human beings, and most people are actually willing to put up with much suffering rather than give up life altogether. That seems a perfectly sensible response.”
But he questions why death is still denied, evaded, and in the case of many clinicians, fought to the bitter end for patients. Callahan’s own conclusion is this: “While it makes sense for medicine to combat some causes and forms of death, it makes no sense to consider death as the enemy. It distorts the goals of medicine to give it a permanent priority, taking some money from research that could improve the people’s quality of life.” At the Edmonton Aging Symposium last winter, Callahan further attacked the view that science will find ways to keep elderly populations healthy. It may not even be a wonderful life for them after all, rather a Malthusian nightmare. “If we all live to be 150, the hospitals would all be full and everyone would still say (life) certainly went by fast,” he says, adding that some seniors may elect or be forced to work much longer, eventually flooding the labour force. “So the only case for extending life spans is that some people want it and that doesn’t seem to be good enough.”
Regarding death as a disease, Callahan told The Observer it isn’t like any other physical pathology, rather a “natural, biological inevitability.” We may, or may not, get cancer or heart disease or diabetes, but we will surely get old and die. Slowing of the aging process to a snail’s pace then is not exactly a clean cure but an “indefinite forestalling” of the worst consequences and its final outcome: death.
Like Callahan, Canadian ethicist Margaret Somerville has long been active in the worldwide development of bioethics. Somerville urges society to be humble in the face of life extension. It must be cautious enough to “move beyond intense individualism and retrieve some ancient First Nations wisdom of looking back and forward seven generations.” She says there’s a fine line between sustaining the life of a human being and altering the very nature of that being. “We have these extraordinary powers to alter life itself — powers no other humans before us have ever had,” explains the founder and director of McGill University’s Centre for Medicine, Ethics and Law. “We, humans, are the result of four billion years of evolution. We’re the wondrous outcome of a combination of stardust and time. And we can now alter that combination in just fractions of a second.”
According to Sommerville, scientists also promise ‘extreme life extension’ in a variety of fields: nanotechnology, microbiology and biological engineering. Some combination of human cloning and cryonics (the deep-freezing of the body) could play an essential role in immortality, short of severe trauma. Robert Freitas, a nanorobotics theorist, suggests we may be able to create tiny medical nanorobots that could go through our bloodstream, find dangerous things like cancer cells and bacteria, and then destroy them. Others say we will continually create biological or synthetic replacements for dead or dying organs.
As well, transhumanists, who support new sciences to enhance humans, contend it will someday be possible to create cybernetic humans or at least upload human consciousness onto a computer system. At this point, the human body would become a mere accessory. People would live virtually and indefinitely. These same transhumanists see a radical future in which technology is the higher power. Perhaps an inconsequential fringe group, but their critics fear that their feverish “pro-technology doctrine” could worsen class divisions, pitting biologically superior humans against their lower-grade counterparts.
That’s pure science fiction to Very Rev. Bruce McLeod, the former moderator of the United Church of Canada and president of the Canadian Council of Churches. An “Old Boy” of Upper Canada College, a charismatic McLeod was the youngest moderator in the history of the denomination. Now 78, he insists that old age is a benediction.
“We’re simply not intended to be here forever,” McLeod says. “ . . . The sudden rush to make everybody live longer is really sad, inappropriate and even offensive; there’s a certain beauty about the aging process. There is a wisdom in the wrinkles.”
Of anti-aging impulses, he also says the bargaining for and stretching of life beyond all limits is an “evasion of this blessing of mortality.” He compares life cycles to those of waves. New people come into the world and open the way for change and development; others die to assist this replenishing of the species. To ask for more time is to interrupt the rhythm of birth and dying. For eventually, our own ocean must break on the shore, he muses.
“Perhaps all your natural functions deteriorate, you lose your eyesight, hearing or ability to walk. And arthritis becomes very painful. It seems almost like a signal from your body that you are gradually subsiding. To try to deny that is almost blasphemous.”
According to McLeod, the paradox is that the healthier people get, the more they want to spend on their bodies, not less. He says: “Only in an affluent society is the luxury of being able to stop aging possible. It’s terrible and unreasonable to pull scientists away from looking at hunger and poverty in Haiti and the Sudan, in order extend life spans (in the Western World).”
The life extension movement dates back to 1970, when the American Aging Association was formed. Denham Harman, originator of the free radical theory of aging, wanted an organization of biogerontologists that was devoted to extending human life span. Then Saul Kent wrote The Life Extension Revolution in 1980 and made a controversial appearance on the Merv Griffin Show. Responding to a deluge of supportive letters, he created the nutraceutical firm called the Life Extension Foundation. The non-profit organization has grown to produce a widely circulated magazine that promotes the benefits of many health supplements, such as S-adenosyl methionine and melatonin. Money raised by the Life Extension Foundation allowed Kent to finance the largest cryonics organization.
Nonetheless, the U.S. Food and Drug Administration (FDA) hasn’t viewed life extension as a valid treatment category. For years, the FDA plagued the Life Extension Foundation by seizing their merchandise and court action. In 1991, Kent and the foundation’s other principal, Bill Faloon, fought the federal agency and filed countercharges concerning their alleged mistreatment. And by 1996, the FDA dropped their case altogether. In response to the legal to-and-fro over the years, the American Academy of Anti-Aging Medicine (A4M) has grown considerably to create an anti-aging medical specialty distinct from geriatrics, and to hold conferences for physicians interested in this field.
With the pace and potential of their research accelerating, biogerontologists simply have an obligation to publicly discuss the timescale for slowing, halting or reversing human aging — what may be possible and when, according to Colin Farrelly, associate professor of political science and philosophy at the University of Waterloo. Farrelly is also a former research fellow at Oxford University’s Centre for the Study of Social Justice and a visitor in Oxford’s Program on Ethics and the New Biosciences. His research interests include the moral imperative to combat aging.
He insists that the ethics just has to keep up with the science. “We can’t be overly optimistic in assuming that genetic technologies will not pose any risk to us. Of course, they can. We must responsibly regulate the technologies to harness the benefits and minimize the risks.”
In his 2007 paper, Sufficiency, Justice and the Pursuit of Health-Extension, published in the science journal Rejuvenation Research, he argues that society should still heavily invest in research projects that seek to retard — even eliminate —the aging process: “The moral imperative to combat aging is important. . . . Our societies currently place a big premium, coping with the debilitating effects of aging: bone mineral loss, reduced muscle mass and decreased lung function. Aging not only affects the wellbeing of individuals, it puts pressure on healthcare resources. The stakes are very high.”
Besides, Farrelly maintains it’s widely considered a great thing when somebody makes it to 100. “My own grandmother lived to almost 100. If she was a centenarian living in the U.K., she would have received a letter from the Queen of England,” he says. “And typically, if you are living a flouring life and are in a loving relationship, you want those things to persist as long as they can. If we’re to be honest with ourselves, we want to wake up tomorrow and the day after that.”
American author Henry David Thoreau once wrote, “Time is but the stream I go fishing in.” Everyone enters that waterway at birth and floats along through life’s joys and sorrows. But inevitably, the water dries up and the journey grows harder.
Edra Ferguson compares surviving a century to winning a million dollars. But with that kind of milestone comes the toil of self-preservation. Plagued with Bell’s palsy, as well as failing legs, stiff limbs and hearing loss, she confesses she doesn’t like to be a burden to anyone but herself now. “We are just trustees of our own bodies. That’s our only business later in life — our challenge,” Ferguson says. Her eyes are both stern and prophetic now. Her heart is seemingly stirred. “You know all that said, I’m still not afraid to die.”
The Old Lady, the Songbird and the Gun
Community workers combat social ills and stereotypes in Toronto’s Jane-Finch community
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, September 2007
It was a weekday morning in June when residents of Toronto’s Jane-Finch community — familiar with the sounds of “pop, pop, pop” and police sirens — were rudely awakened by barking dogs and heavily armed officers from the Toronto Police Services’ Emergency Task Force. During the pre-dawn raid in the Driftwood Crescent public housing units — in suspected crack cocaine dispensaries — police seized 30 kilograms of cocaine, nine kilograms of hash oil, several kilograms of marijuana and a number of weapons, including sawed off shotguns, .357-Magnum pistols, .22-calibre revolvers, .38-calibre revolvers, a pellet gun with a blue bandana tied to the handle and 40 rounds of ammunition. Project Kryptic, as it was called, targeted the street gang known as the Driftwood Crips and led to more than 700 charges against 98 adults and seven youths. In the end, the gang that represented the greatest threat to the greatest number of people in Toronto put their hands up and said, “Pay attention to us, we’re a group that needs to be dismantled,” the Toronto Police Services boasted.
The operation followed a spate of gun-related crimes in the Jane-Finch area this past year, including the high school shooting death of 15-year-old student Jordan Manners. It went down shortly before the death of 11-year-old Ephraim Brown. The city’s 43rd homicide victim of the year, Brown was shot in the neck while attending his cousin’s birthday party at the Yatescastle public housing project in the Jane-Finch neighbourhood.
But while this rash of violence evokes images of east L.A.-style mayhem, the true heart of the neighbourhood is not gang members but regular citizens: teachers, parents, police, youth — and United Church congregations and community workers — who are trying against tough odds to build a strong and vibrant community. Theirs is an uphill battle, fought on two fronts: the power of gangs and the fear that violence breeds; and the pervasive social stigma that assumes nothing good can come from a place called Jane and Finch.
Centered around the intersection of two arterial roads (Jane Street and Finch Avenue) in north-west Toronto, the area is often dubbed the most ethnically diverse parts of the city. Here, there are 120 nationalities and ethnic populations and more than 100 languages spoken. There are disproportionately high numbers of refugees and immigrants, sole-supported families, low-income earners and public housing tenants. The United Way’s 2004 Poverty by Postal Code report explained that one in five families in the Jane-Finch region today live in poverty.
It wasn’t supposed to be this way. Originally developed as a model suburb by the Ontario Housing Corporation (OHC) in the 1960s, the community was planned to accommodate a dense population. However, little thought was given to the social infrastructure needed to sustain a healthy community life. As rapidly as it was erected, Jane-Finch experienced massive growth from 1961 and 1971. Between 1981 and 2001, the total population of northern Toronto communities grew by another eight percent — in poor economic families by more than 80 percent, according to the United Way. And by 2001, a paradigm shift saw immigrants ‘without a sou’ accounting for 62 per cent of all family populations.
“Yes, these are the people that we hold in our hearts as we work, on behalf of the church, to bring about justice,” says Barry Rieder, who for more than 10 years has headed the Jane-Finch Community Ministry, with the United Church of Canada’s Toronto West Presbytery. It is one of more than 30 grassroots associations, including social and health service organizations, addressing a wide range of economic, social and recreational needs in Jane-Finch. The so-called “energy from the edges,” Rieder’s ministry has long worked to make better the area’s spiritual, physical wellbeing, offering it pastoral care and advocacy through coalitions and networks.
Rieder seems right at home in the Firgrove Toronto Community Housing high-rise, where his office is located. On most days, he sports sandals, baggy jeans and a black T-shirt emblazoned with appropriate signage: “Jane and Finch’s finest. One love, one heart, one community.” He says: “Historically, many of these public housing communities are ghettoized from the rest of Toronto. They are wonderfully rich in culture, but they continue to struggle with these issues of poverty, isolation and systemic violence. It’s that simple.”
Community volunteer Merle Cowie has lived in Firgrove for more than 30 years. Says Cowie: “I wish the violence wouldn’t come here anymore. We don’t do the killing ourselves. We just do the grieving.” Another Firgrove resident and volunteer, Ann-Marie Chow, attended the barbecue where young Ephraim Brown was shot. Chow says: “We are human beings, living normal lives. We have the right to live in this universe, in this space and enjoy ourselves and our families. Unfortunately, the devil has a hold of many young people and they can’t be pulled back.”
Firgrove is relatively safer than most neighborhoods, sources say. Still, it’s badly in need of a facelift. Eyesores include sun-baked lawns, shoddy streetlights, gated public pools and poorly maintained basketball courts. Its high-rises and townhouses are either painted in drab tones or defaced with gangland graffiti. Hip-hop tags or “throwups” can also be found on the walls of recreational facilities, newspaper and mailboxes, park benches, utility boxes, as well as bridges and overpasses.
Today, Jane-Finch is home to Canada’s largest concentration of gangs. The Crips, distinguished by the blue do-rags in their pockets, lay claim to the North Side or Up Top above Finch Avenue, while the Bloodz set apart by red colours have the South Side or Down Bottom. Both groups are sworn enemies, although the Toronto Police Service says there is growing co-operation between the two. Some gang members even switch their affiliations along with their do-rags.
They have given public housing complexes at Jane-Finch more savoury street monikers: Connection, The Grassways housing complex at Firgrove Crescent and Jane Street; The Lane, the housing at Driftwood Avenue and Grandravine Road; Shore Shot, the Shoreham Court; V-Block, the Yorkwoods Village at Yorkwoods Gate and Driftwood Avenue; Y-Block on Yellowstone Street; D-Block, The Woods, the row of housing on Driftwood Avenue and Driftwood Court; and G-Side on Gosford Boulevard; as well the monolithic Palisades, the three adjoining buildings on San Romanoway that have long typified Jane-Finch.
Sporting gang-specific tattoos and gold-plated teeth coverings, crews make money trafficking in marijuana and crack cocaine; invading rivals’ homes, stealing cars, procuring prostitutes and operating ‘booze cans’ inside public housing complexes. According to the Toronto Police Service, hard-core gang members are culturally and criminally enmeshed in criminal activity — sometimes for life. Then there are associates, fringe members and young “wannabes” who drift in and out of neighbourhood crews.
However, the Crips and Bloodz are not entirely stag. Females, too, made up about a third of the arrests from Project Kryptic in the summer. They are girlfriends, middle-age moms and teenage mothers who willfully took part in criminal activity or were got caught up in the events surrounding their partners, brothers and sons. Some, like the Driftwood Crotchers, offer refuge for males, their households “stash houses” for weapons and drugs.
Getting out of gangs isn’t easy, sources say. In some cases, members are close friends, hang out at the same places and maybe attend the same school. Sometimes gangs make leaving dangerous; they may even ask you to kill someone. Young men and women longing for an exodus usually have to leave their neighbourhood or city altogether.
Some say the Jane-Finch community is living in “quiet agony.” However, Rev. Vicki Obedkoff of Downsview United Church, argues that the extreme violence is happening in a small geographical area; only a minority of people are actively involved in crime and violence. “I don’t feel like by walking around down here, somehow I’ll be hit by a random bullet. That’s just not how it is. When you live up here, you learn to weave your way around (the gun violence).”
Of her small, 120-member church, she says: ”I believe we’re on the cusp of an amazing intercultural ministry. We’re sitting in ecological paradise. There’s lots of healing potential, lots of healthy ecological and human resources. … It’s a struggle and a great act of faith, but people choose to stay and remain active in this community.”
Lynette Hamid, a Downsview United Church member, lives with her husband and three daughters in a middle-class bungalow off of Driftwood Avenue. “I live in a bubble because until only two years ago, I wasn’t aware that this was a very unsafe neighbourhood,” admits Hamid, who volunteers about 33 hours a week at Downsview United and other community organizations. “I have always felt pretty safe here. I know my neighbours and they keep an eye on my property.
“However, the threat is now very real … People always ask me why I don’t move to a bigger house north of the city. But I just say, ‘a bigger house for what, that’s more rooms to clean.’ We’re quite comfortable where we are, and I believe things will improve if everybody works together getting the guns off the streets.”
Her effervescent daughter Leah, 10, says: “Nothing really happens here, from what I can tell. But we have heard gunshots (at the Driftwood Community Centre) behind our house before. . . . I don’t want to start worrying or anything, but I know to come inside immediately after dark.”
According to Barry Reider, a diverse, lower-income population like Jane-Finch lends itself to all kinds of double standards and racial stereotypes. More attention, Rieder argues, is paid to white victims of violence than black victims. And so-called black crime is played up in the media while white criminals (i.e. Russian mafia, European gangs and right-wing biker gangs) get little or no coverage. As well, there is a litany of abuse, harassment and discrimination claims made by black youth and their families, in particular. Youth are routinely stopped by police or confronted by security guards in their housing complexes, he says. There’s overt monitoring by storekeepers too. Some youth are reportedly evicted from stores in strip malls despite doing nothing wrong. It makes residents here less willing to work with law enforcement whenever there’s real trouble.
This “No Snitching” street code is a real problem for police, according to Staff Sergeant Ian Lamond, with 31 Division’s Community Response Unit, which patrols Jane-Finch. However, Lamond says that after Project Cryptic, there was short-term improvement in the Driftwood community in particular. “People who were sick and tired of the gun violence began opening up to us in order to come out to enjoy their own neighbourhood,” he says. “They realized that their kids should be able to go out and play without someone shooting around them. And without their cooperation, we can’t do anything about that.”
Lamond continues: “We don’t have the resources or money to sustain that kind of initiative to sustain (Projecct Kryptic) over and over again. We can increase patrols only so much. So it’s also important that we get through to youth and adolescents when they are more responsive to us, when they realize that we are members of the community, ourselves, and that we are involved.”
The Toronto Police Service’s Community Mobilization Unit serves as one bridge between the public and the police. It includes the Empowered Student Partnerships program, the Public Education and Crime Eradication (PEACE) Project, the Newcomer Outreach Program and Family Services. There is also ProAction Cops and Kids, where police officers and at-risk youth interact under better circumstances: painting, drumming and fishing, as well as sports.
Sgt. Steve Hicks, also with 31 Division’s Community Response Unit, also wanted to make a difference in the lives Jane-Finch youth. So in 2002, he founded For Kicks Soccer, a series of sports clinics for youth. They receive lunch, a jersey, a soccer ball and an opportunity to discuss anti-bullying, leadership and other youth issues. Today, For Kicks has grown to include nine police divisions with officers with 15 divisions and units across the Toronto Police Service.
“We want to get the guns and violence out of here as well as end the cycle of ‘po-po’ (police) haters,” says Hick, who grew up in a crime-ridden neighbourhood in Toronto’s East End himself. “I’m straight with these kids when I tell them, ‘Stand up and be a leader in your community because it’s not the leaders who get shot dead, it’s the followers’ . . . I don’t believe that by the time these kids are 14, they are lost causes — no way.”
To their parents, Jane-Finch youths are diamonds treated like worthless stones — dropouts on the corner depicted as fools. As such, youth’s existence continues to be a grinding effort, guided by a need to divert attention to outside felicities. Losing themselves to this gut-religion or gluttony, as journalist John Howard Griffin once wrote, is their hasty exit from squalor.
Still, Rieder remains cautiously optimistic. What should come to people’s minds when they think Jane-Finch, he says, is a place where you can get any food in the world and witness any cultural happenings, rather than drugs, guns and violence.
“I think that the future for community ministries in Toronto West Presbytery can be great if we continue to provide a United Church presence of walking with oppressed communities who have been pushed to the edge. We are already on an exciting path of assisting congregations in Toronto West with their own transformation of moving from charity to justice. . . . But there is a limit to what we can do on our own.”
Single and with two jobs, social worker Doreth Brown is one matriarch trying against all odds to raise her children on her own
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, September 2009
Downstairs at Toronto’s Metropolitan United, the menfolk are on tenterhooks. The queue for a hot breakfast is unusually long this bitter March morning. A few stand stiffly and mouth a prayer, while others — addicts and alcoholics mostly — jerk their heads left and right, and fling their arms this way and that way. Amidst this procession, a thickset black woman with close-cropped hair, sporting a blue sweatshirt and jeans, moves in a manner that is without hurry or effort. She greets every other fella in line, listening to their rumblings of discontent. For one man who appears downcast and ill at ease, she softly hums a tune of her own making. “And how art thou?” she inquires, intoning the words of the Bible, and with the slightest Jamaican inflection. To another sprawled across the floor, she gently asks for a little courtesy, and he returns a disdainful stare. “Oh, we’re all smiles today, aren’t we?” she says, laughing uproariously. Having done this type of work for two decades, she remains undaunted by it — even wholehearted. You see it’s toil not only for the city’s down-and-outs, she admits; rather for her own kids.
Doreth Brown is many things: a social worker, a single woman, a devoted 47-year-old mother of three. Having been divorced twice now, with little or no support from her ex-husbands, she holds down two jobs in social services. Combined, she earns a middle-class salary, but it means long hours in often-cheerless surroundings as well as much time away from her young family — sometimes to their detriment. Her oldest, Andre, 23, from her first marriage, is still “trying to find his way” after serving time in prison for gun possession, she says. Meanwhile, her stepson Mario, 20, and daughter Tyana, 17, are coming to grips with young adulthood themselves. “I don’t like talking this way, but honestly, it’s been really hard for us,” Brown says matter-of-factly. “We do more than just get by, but it’s been a lot of work if you want to know the truth.”
The theme of single motherhood runs like an undercurrent through reports of troubled black youth — those whose fathers are in and out of their lives or have never been there at all. Children reap plenty of benefits from their single working mothers, but some disadvantages, too, given the limited time — and money — these moms can provide to their kids. The end result for many kids: shattered self-esteems and even forays into street crime. Also, between raising their children and keeping their jobs, mothers like Brown often neglect their own mental health, often with serious and sad consequences. Brown’s isn’t the whole story, of course: no single narrative can entwine the multiple layers of black history and culture. But in its own way, her experience provides an insight into the unique challenges facing single black mothers in Toronto and other big cities.
Brown was born — and raised by her store clerk father — in Clarendon, Jamaica, one of the country’s populous parishes. But there weren’t enough good jobs to go around, so when she turned 18, she migrated to Toronto to live with her mother and siblings, who left Jamaica when Brown was a child. In the troubled Jane and Finch community, on the city’s north side, she lived in overcrowded public housing — what Brown calls “P-housing.”
“It just wasn’t what I wanted for myself,” says Brown, who rather than descend further into poverty strove to rise above it. She decided on a career in social services, becoming a health-care aide for the aged and later a nursing clerk, as well as a program support assistant at a group home for teenagers. Since April 2002, Brown has worked the night shift at Seaton House Men’s Shelter in Toronto. In 2005, she took up a second job during the day, joining Metropolitan United’s community services team.
But despite these attainments, her two marriages were rather short-lived. Both before and since her career success, the men in her life were more like passing acquaintances, she admits. And it’s forced her to work longer hours to support her three children.
Her daily routine is hurried, regimented — more like a ritual of dispersions. She awakes at 6:30 a.m. in her Mississauga, Ont., townhouse and has two cups of black coffee. Prepares lunch and dinner meals. Readies herself for work. And then contends with rush hour traffic on her way to her children’s school and Metropolitan United, in downtown Toronto. Here, Brown, a former Pentecostal, provides outreach to the homeless alongside other community services counsellors. Often, she’ll lend a hand in the kitchen before lunch and make a run to the Daily Bread Food Bank, too. Then mid-afternoon, it’s off to Seaton House, where she counsels more clients — at times over a cold cafeteria dinner — and inspects the dormitories before lights out. Perhaps there’s time to catch her children’s happenings when she returns home late at night. Maybe even a snippet of one of her favourite TV dramas.
Recent statistics illustrate the continued decline of the nuclear family across the country. Single-parent families now comprise 15 percent of all Canadian households — up from 12 percent in 1990 — according to Statistics Canada’s 2006 census. More than 80 percent of lone parents are women. Indeed, the family portrait has changed. And anecdotal evidence suggests that black women are shouldering far more than their share of the parenting burden.
The story is much the same south of the border. In the spring 2005 issue of the Wilson Quarterly, a journal produced by the Washington, D.C.-based Woodrow Wilson International Center for Scholars, David Popenoe, a sociologist at Rutgers University, reported that nearly 50 percent of American children went to sleep each evening without being able to say good night to their dads — three times more than in 1960. The decline of fatherhood, he wrote, is a major force behind youth crime and delinquency, pregnancy, depression, substance abuse and alienation. It’s also a factor in the growing number of women and children living in poverty.
U.S. President Barack Obama also wrote about his own absent parent in his autobiography, Dreams from My Father. In June 2008, on Father’s Day, then-Senator Obama sharply assailed absent black fathers at Chicago’s Trinity United Church of Christ. “We need fathers to realize that responsibility does not end at conception,” he told the crowded congregation. The speech was striking for its setting, a predominately African-American church, and in how Obama directly addressed one of the most sensitive topics in the black community: whether absent fathers bore responsibility for some of the social problems affecting African Americans.
Brown often sings the praises of America’s first black president. Yet she’s a role model to her children in her own right. From time to time, her kids will inform her how “strong and brave” she is performing social work nightly at Seaton House Men’s Shelter, a refuge to more than 700 homeless in downtown Toronto — many with drug and alcohol problems and mental illnesses.
As Brown begins her rounds here as a client service worker, she recites the inscription on the front of Seaton House: “There are only three kinds of men: somebody’s father, son or brother.” The words bring her perspective even on the hardest of nights. At first, she’s greeted by male clients ambling in the main corridor, where the smell of air fresheners and industrial floor wax compete with the scent of strange bodily odors, alcohol and machismo. Straightaway, she’s involved in the assessment of Steve, an elderly man with stretched-out earlobes and spiky hair, who swerves and speaks nonsensically.
Brown takes on the temperament — if not the convictions — of a streetcorner preacher when working with Steve and others who are intoxicated or high on drugs. Because of their precarious states, she and other staff members often must check them into a detox centre or an emergency room, or place them in Seaton’s Annex Program for men with addictions. Some are later helped to find a new home.
Reynaldo Martinez, a shift leader at Seaton House, has worked with Brown for more than four years. “Upon intake, she’s able to examine each person — looking down below the surface — and figure out what’s really going on with them,” Martinez says. “She’ll quickly look over to a colleague at Seaton House and say, ‘Yo, this guy really isn’t on the level,’ and move swiftly and accordingly.”
Brown’s colleagues see the irony in a single mother working with down-and-out males. They’ve quietly wondered how she feels about those who have abandoned their own families somewhere down the line. But there appears to be no prejudice on her part — no ill will either. Says Brown: “I don’t hold any resentment toward men because I’m doing the single parenting thing. That just wouldn’t be fair. These men of Seaton made their mistakes, true. But they have regret. They talk about their families, their lives, how they’ve lost everything.”
Brown knows the perils of parenting alone, though. In 2005, her oldest son, Andre — then 18 years old — was charged with possessing a firearm for the second time. He was arrested along with two other young men while joyriding in his mother’s car. Later, he served more than a year in the Penetanguishene, Ont.-based Central North Correctional Centre.
Andre, according to his mother, had been a serial collector of resentments leading up to his incarceration. He had a doting mother to convince him he could accomplish anything, but an emotionally distant father who was seldom a part of his life and provided no financial support to Brown. As a result, Andre became a caricature of black male adolescence, posturing mannishly while denying his own frailty. Today, he is unemployed after attending community college and briefly working at an electronic parts company. His mother is now encouraging her son to find a job in the trades.
“You know, I was working too hard to put bread on the table for (my children), and I just wasn’t around that often to supervise my oldest son,” Brown says while sitting in the upper pews of Metropolitan United’s main sanctuary — a place of solace for Brown midday. Her spirits are lifted by the stained glass window above the west aisle door — a memorial to a “beloved mother and a beloved wife.” Depicted is the garden scene in which Jesus of Nazareth appears to the three Marys after his crucifixion. “You know, maybe if I spent enough time with Andre when he was growing up, he would be a better person,” she continues to muse. But that’s a whole lot of “what ifs.” And she’s partly consoled by the various letters Andre wrote to her while in prison. In one correspondence, he writes openly and prosaically: “Mom, you raised us good. It wasn’t you; it was me.”
Single mothers often transit between feelings of pride and feelings of shame, says Kerry Daly, a University of Guelph family relations professor and director of the Father Involvement Research Alliance (FIRA). And with good reason. In his paper, The Family Time Crunch, produced by the Vanier Institute of the Family, Daley writes: “With a kind of sacrificial tone, many parents talk about the importance of family time in order to make the children happy. But the discordance between their ideals and reality mean that many parents are living in a state of chronic guilt. They express guilt for working so much, for using babysitters and for not spending enough time with their children.”
Because stress and mental illness are inherently linked, it’s no surprise that single mothers suffer more frequently from depression, experience greater disability and report a lower overall quality of life than married mothers. Consider this data from the 2006 Canadian Community Health Survey on Mental Health and Well-Being: more than 10 per cent of single mothers reported symptoms of major depression, more than twice the level found among married or cohabiting mothers.
Mentally and physically, Brown sometimes shows the wears and tears of a single mother with two jobs. But mostly, her exhaustion is masked by a broad fixed grin. “Resilient, positive, yes, I’m those things. I just don’t believe in giving up in this life. People go on about having a bad day. Well, there’s no need to talk about that nonsense.”
Still, Brown often talks about black children — not just her own — getting short-changed, and men — not just those she’s estranged from — needing to “step up to the plate.” It’s a worn-out pronouncement, perhaps, but one echoed by parenting expert Dr. Wanda Thomas Bernard, the director of Dalhousie University’s school of social work. In her papers on black men and on fatherhood, Bernard explains that life is already pre-scripted for many males, and that a lack of opportunities leads some away from their families. She underscores the need for “other men” — relatives or friends of the family — to mentor children in place of birth dads who have died, left the family or were never there to begin with. “Such positive black men are best-kept secrets,” she writes.
Without the benefit of “other men,” Brown spends every minute of her weekend with her kids. This is when the family converges for trips to the Mississauga mall. Some housework. Some homework. Plenty of preparation for the long workweek ahead. That’s when she hears the rhapsodies of praise from her kids. “Mom, whatever happens, you’re not about to give up on us,” they’ll tell her occasionally. Other times, they’ll offer: “Without you, there’s really no us” — words all too soothing to Brown. “That’s when her eyes will light up and her smile will grow ear to ear, knowing the fruits of her labours have been realized.
“It’s awfully good to hear compliments from my kids now and again,” Brown says haltingly, trying to find the right words to convey both pride and self-effacement. “Yes, I guess it sounds just about right.”
Three years after being destroyed by a monster tornado, a small town in rural Kansas is setting a global standard for sustainable living
By KEVIN SPURGAITIS
A version of this article appeared in the UC Observer, June 2010
GREENSBURG, Kan. — The sirens started wailing at 9:15 p.m. on May 4, 2007. Sharon Schmidt was returning to her home in Greensburg, Southwest Kansas, when a tornado so huge it looked like Satan’s wrecking ball slammed into the township. The funnel cloud, nearly 3 km-wide and covering an additional 35 km, brought with it winds topping 300 km an hour and obliterated most buildings. Family cars reportedly cartwheeled over the three-storey Kiowa County Courthouse, leaving streaks of auto paint on the roof. Heard below the howling wind were bricks being tossed, glass shattering and rafters splintering into twos. Then suddenly — after 12 minutes of havoc — nothing. Only the sound of rain falling down into exposed basements. “Okay, this one is really, really bad,” Schmidt remembers saying during the downpour. “We’re in deep trouble here.”
Only when dawn came did the tornado’s true scale set in for her. Among the rubble, power poles and lumber scraps lay strewn like hay. Century-old trees were either uprooted, sheared or punctured by license plates, kitchen utensils and other oddities. Navigating the wreckage with nothing more than a pair of flip-flops on her feet, Schmidt found scarcely a roof intact, including the one on her rented home. She later learned that her former father-in-law had been pinned under his four wheel-drive pickup, which was tornado-swept and dropped back onto his property. The 77-year-old later died in the hospital.
In all, the EF-5 tornado took eleven lives in Greensburg. Ninety-five percent of the town was reportedly destroyed, leaving survivors without homes, businesses, schools and basic city services. Just days later, however, at a standing-room-only meeting under a tent, the town’s leadership committed to rebuilding. Only the new Greensburg would not be a replica of the old; rather it would be reborn as a sustainable community. And the majority of townspeople, including the Schmidts, embraced the idea.
Three years on — with a post-twister population of less than 1,000 — Greensburg is back “stronger and greener,” as the placards outside newly rebuilt homes proclaim. Its transformation from a town whose claim to fame had been “The World’s Largest Hand-Dug Well” to the greenest community in the United States testifies not only to the resilience of its heartland citizenry, but also to the power of environmentalism to cut across ideological, partisan and religious lines, uniting communities in a common cause.
Situated in middle-America’s Tornado Alley, between warm and cold air masses, Greensburg was a prime target for a killer storm but an unlikely beacon of environmentalism and sustainability. Before the tornado struck, Greensburg was dying. As it had all over Kansas, agribusiness had swallowed up family farms. Oil and gas production had exploded in the 1970s and ’80s, but automation in the booster stations meant fewer and fewer jobs. By 2000, per capita income had dropped to US$18,000, and about 12 percent of the population was living below the poverty line, according to the city’s own statistics. Thomas Frank, author of the 2004 book What’s the Matter with Kansas?, must have had communities like Greensburg in mind when he wrote that the Jayhawk state “is pretty much in a free fall . . . in the early stages of irreversible decay.” Frank’s book explores the state’s shift to the far right in the face of Republican economic policies that haven’t always helped it. Greensburg, like the rest of Kansas, hasn’t voted for a Democratic presidential candidate since 1964, when Lyndon Johnson won in a landslide.
In this part of the American heartland, political and religious conservatism go hand in hand. Battles have raged for decades over gay rights, abortion and the teaching of evolution in schools. Just outside of town, a sign in the undergrowth reads “Try Jesus. He never fails!” Before the tornado, nine churches served a population of 1,400.
Greensburg’s neighbour, Pratt, Kan., might seem an unlikely place to start a natural foods co-op, but that’s exactly what Daniel Wallach and his wife, Catherine Hart, did when they moved to the area in 2003. They were unaffected by the tornado but deeply moved by the destruction it wrought — and the possibilities for renewal it presented. Perhaps being outsiders gave them an advantageous perspective. Although skeptics likened Wallach to the Emerald City charlatan in The Wizard of Oz, he eventually emerged as one of the principal cheerleaders for Greensburg’s rebirth.
Today, Greensburg Greentown, the organization that Wallach founded in the wake of the disaster, helps sell the idea of sustainable rebuilding to homeowners and businesses, and points them to the resources that can make it happen. Among them are the U.S. Department of Agriculture and the Department of Energy, which have sunk millions into various projects. Federal funds have supported the retrofitting of the county courthouse and jail, one of the only structures left standing after the tornado, and the rebuilding of the city hall, the county hospital, the arts centre and the local high school, as well as private and city-owned businesses. All of them now meet the U.S. Green Building Council’s LEED Platinum standards, the country’s highest possible certification for green design.
More recently, the town became the first city in the United States to illuminate its streets with LED streetlights, which are projected to save 70 percent in energy and maintenance costs compared to old sodium-vapour lights. Another standout: the newly erected Greensburg Wind Farm. Owned by John Deere Renewables, it is made up of 10 1.25-megawatt wind turbines and aims to provide the town with 100 percent renewable energy 100 percent of the time.
“FEMAville,” the encampment of government-owned emergency trailers on the south edge of town that housed hundreds of twister-affected families, is now gone. About 250 low-slung ranch houses have been built in its place, about half of them using 40 percent less energy than a typical home before the storm.
Schmidt, a co-ordinator at the local mental health centre, lives in one of these new homes — a residence built to green specifications with the help of the Mennonite Disaster Service. It has energy-efficient lighting and heating, and superior insulation in the form of recycled newspaper pulp and insulated concrete form blocks. As well, her south-facing windows are shaded with trees and shrubs. Her kitchen is state of the art too and includes a low-water-use dishwasher.
Schmidt’s new home is decorated simply. The walls are mostly bare, except for family portraits of her two sons, her daughter and her grandchild. An old, wobbly table stands in the kitchen, along with three matching chairs — remnants of her last home. “Looking around the place, I’d say the old house was a little bit larger, sure,” she says. “But I own this one and I just love it; it’s such a sanctuary.”
Two years ago, farm couple John and Janice Haney, both in their mid-50s, finished their new home on their century-old, 40-hectare farm. “At our age, we really should have built back in town,” John says. “But to be honest with you, it only took us three days after the twister to decide otherwise.”
In some ways, their 2,600-square-foot homestead harkens back to earlier farmhouses. “Our house here is called an earth-bermed home,” Janice says, sounding like a high school science teacher. “We have dirt that is pushed up three-quarters of the way onto the east and west sides of the house, which provides natural insulation. As well, we have a geothermal heating and cooling system. And our pond out back was dug for us to enjoy the wildlife and for our household water to permeate back into the natural water table, where it’s used again.” There are only 36 other houses like the Haneys’ in the nation.
“We can be green without having to build multimillion-dollar facilities,” says Janice. “To me, it doesn’t make any difference whether a building is LEED Platinum or something more traditional like an earth-bermed home. You’re being environmentally friendly just by hanging your clothes out on the line. . . . Out here, I also have this big garden, and I’ve gone back to canning and freezing the food I grow. And it seems like, yeah, we’re reversing back to when my husband’s ancestors settled this land.”
The Haneys raise an interesting point. Whether they realize it or not, the people of Greensburg have embraced some of the values of an earlier time as they create a model community for the future. That’s part of what green living is all about, says Ruben Aronin, director of communications for Global Green, the American arm of Green Cross International. Global Green partners with local governments to establish green building programs.
Says Aronin, “That commitment and love of place is really at the heart of the green and sustainability movement. In a lot of our mega-cities, we don’t necessarily see the interdependence of natural systems. But in the rural heartland, there is a certain connectedness — the espousal of the frugal values that America has always stood for in some of its lore. So it’s rather fitting that the community of Greensburg first rallied around renewal and then embraced green building and renewable energies.”
Something else happened in the wake of the calamity three springs ago. The disaster presented not only a chance to rebuild what was lost but also an opportunity to make things better. Observes Daniel Wallach, “It’s powerful that all the different parties have come together to help fulfil this greater vision in the community.”
Wallach often talks about the green movement having “roots and shoots.” “The shoots are the innovative buildings, the LED streetlights and the wind turbines, as well as all of the material stuff, but those are all undergirded by a powerful root system that is from the heart and spirit.” With a little coaxing, environmentalism flourished from those roots when the tornado took away everything else on the surface. It led to personal as well as community transformations.
“I was one of the most ignorant people to green that you would find, and I wanted to stay that way, too,” says Pastor Marvin George of First Baptist Church. The 51-year-old is every inch a southern preacher man. Goatee. Leather sports jacket. Wing-tipped boots. A transplant from Benton, Ark., he has lived in Greensburg with his family since January 2001 — about the same time the U.S. evangelical movement began to flex its considerable lobbying muscle in the name of the environment, asking the pointed question, “What would Jesus drive?”
A self-described “Big-C” conservative, George typifies the transformation that many evangelicals have undergone in the last decade. “[The green movement] reaches far and beyond what my finite mind can understand: sustainability, carbon footprints and all those other things,” he says. “But what finally hit me was that it’s not about bringing a ‘little bit of liberalness’ to town, as some may have thought. It’s about the smart stewardship of resources on this Earth. God provided the plants and trees for us to use — not to be wasteful of.” He continues, leaning forward and grabbing a handful of chin. “It’s not a political issue, you see. It’s not a Christian or non-Christian issue. This is a way-of-life issue.”
Until recently, George drove a Toyota Prius hybrid— something he bought after his big sports utility vehicle was destroyed by the tornado. As well, he made certain First Baptist Church was rebuilt sustainably, right down to the bricks and mortar. He even picked out the light bulbs himself. First Baptist is just one of seven local churches that have been reconstructed.
“I’ll tell you what it’s done for us. It’s given us an ability to reach out to a younger base of people we didn’t have before. The younger ones have been thinking this way for years, you know. So we were able to assimilate them into our congregation. And they responded with, ‘Wow, this church is a really green church, something I want to be a part of.’”
Mayor Bob Dixson has watched his town transform from a dying remnant to a community whose rebirth warranted special mention from President Barack Obama in an address to a joint session of Congress in February 2009. Dixson was in attendance. Back in Greensburg and wearing his customary blue jeans and green dress shirt — the town’s name stitched into the left pocket — he cannot disguise his pride in what his town has accomplished. “There’s something special going on here,” he says, “and many folks can see that. We’ve shown great resiliency.”
Still, Dixson admits, there remains lingering fragility, “emotionally and spiritually.” He acknowledges that “rebuilding sustainable has really been instrumental in the saving of Greensburg.” But new construction has levelled off as a result of the recession. Partly as a result, Dixson spends a lot of time travelling across the country, trying to attract green industry. “Given the small scale of our town, given we’re a living laboratory for all things green, it really lends itself to being a platform for small clean technology companies that have good ideas. And with them might come ‘green-collar’ jobs that will keep kids in town after graduation and induce young professionals to settle down and raise families here.”
A clutter of catastrophe is still evident in Greensburg. Some semblance of a disaster zone. Once-stately maple trees stand damaged or rotting. Patches of grass, sunburned and low to the ground, lie beside stretches of cracked asphalt. On one derelict house, a frayed American flag still flies, and spray-painted over the peeling paint is the single word “Keep.”
In spring, the late-day sky over Greensburg gives off a strange orange glow. Thunderclouds, black and ominous, aren’t far away as Sharon Schmidt settles into a wooden chair atop her new veranda. The prairie winds whip against her face. “You know, I don’t always like this Hollywood-greeny thing,” she says, her words parcelled out slowly above the din of Bobcat tractors and cement trucks, and the pounding of jackhammers. “Sometimes, I think I just want my old house back. I want my couch back, you know? I want the high school back, and the gym where we had our prom, and all the kids played basketball and all that. The way things were.”
Still, the town’s green rebirth excites Schmidt. “I’m seeing things go up daily, and it amazes me. It was really quite phenomenal what happened here, and I need to remember that.” She continues to do her part — “the small things,” she says — recycling, turning off the faucet when she’s brushing her teeth and turning off the lights when they’re not in use. “I think there’s much goodness in this.”
Her 19-year-old son, Taylor — the youngest of three children — attended Greensburg’s city council meetings regularly after the storm, volunteered for Greensburg Greentown and helped form Greensburg high school’s first-ever green club. He is now in his first year at Kansas State University, studying foreign relations and leadership, as well as giving tours of the school’s own green-certified facilities.
“When I was growing up in Greensburg, if I’m going to be brutally honest, I couldn’t wait to leave,” he says. “But now, I can’t think of a better place to raise a family and to push for different things. . . . It’s because of our lessons, because of the deep spirit of humanity that has swept through Greensburg that we are who we are today. What we’ve learned, what we’ve gained, what we’ve been immensely blessed with has made all the difference.”
Of course, the world’s biggest hand-dug well will always be there, Taylor adds. But without question, the town’s green redevelopment is “something much larger than that.”
Lives Lived: David Albert Spurgaitis
Son, brother, nephew, cousin, friend, 'green thumb,' benefactor. Born October 24, 1971, in Toronto. Died December 9, 2003, in Toronto, of complications from diabetes, aged 32.
By KEVIN SPURGAITIS
Originally published in the Globe and Mail, January 2004
Dave was one of those unassuming souls who stroll in and out of lives without a stir. As his mother, Elizabeth, remembers it, he could not wait to be born, setting foot in this world nine weeks premature, just ahead of his twin brother, Paul. Despite a “wee” size and an operable tumour on his forehead, Dave grew up strong and lofty with the most expressive eyes. Yet his imperfect teeth and peaked complexion bore a child-like insecurity, too. He was soft-spoken, with a cemented smile, as a matter of consequence.
Although he developed Type 1 diabetes later in life, Dave stood tall with his shortcomings, never revealing frailty. A graduate in creative advertising, Dave made his living as a downtown sales associate, amassing scores of “Employee of the Month” awards and thank-you cards from customers.
He made his modest East York bachelor “home” — one meticulously decorated with both antique pieces and more thrifty furnishings. Big dreams and fancies were framed and nailed to the wall: palm trees and surf; vintage Volkswagens, as well as Mickey and Minnie. But while he had a palate for life’s finer things — usually imported cigarettes and ale, as well as the vocal timbres of Otis Redding, Nat King Cole and Nina Simone — Dave toted an old, tattered rucksack and sported dress shoes that had seen better days. He was absolutely fine with what he had and the way things were. This selflessness — the upshot of an Irish-Lithuanian, working-class upbringing — also led him to promote porch-side chats and Sunday strolls along Toronto’s Danforth Avenue, with his mother or best friends in tow.
For people’s birthdays and holidays, he frugally stockpiled knick-knacks in his cabinets, and cooked up Thai and Indian delights. It was only the year before his passing, however, when he learned to receive gracefully although as one friend put it, “he never fully realized he didn’t have to be the one putting himself out all the time.” Another friend unreservedly penned inside of a Hallmark card: “To the nicest guy ever! (He made) each person feel important enough to deserve (his) personal, undivided attention. (David was) always there even though (his) day was usually full and (his) workload heavy.” Yet he would be the one to thank you a thousand times over, completely unabashed.
In that way, he remained dignified for what’s really a half-life — a mere 32 years. But just how a schoolboy etches his name into a fresh piece of sidewalk, Dave, too, left behind an indelible mark. Dave, Wee Dave, D, the Perfect Gentleman — that Gentle Giant — was here.
Do We Face a Future Without Down Syndrome?
Advances in prenatal testing mean parents can detect the chromosomal difference earlier. What does this mean for the future of Down Syndrome?
By KEVIN SPURGAITIS
This article appeared in the UC Observer, September 2018
It’s a cloudless, sun-drenched evening in June as Alison and Jeff Senior, together with their three-year-old, Kira, arrive for Kira’s junior kindergarten orientation at Cedar Creek Public School in Ayr, Ont. The classroom is festooned with finger paintings, paper cut-outs of flowers and butterflies, and a quilted wall hanging of Winnie-the-Pooh. Scattered about are children’s toys, whose clanking, jingling sounds interweave with exuberant cries.
Kira is round-faced and pigtailed, dressed head to toe in pink and blue. With a wide-eyed grin, she unhesitatingly approaches parents and “future Coyotes,” stretching out her arms and uttering words of greeting.
“We’re so terribly excited [about Kira starting kindergarten],” says Alison. “She is all about people.” Alison concedes, though, that her daughter’s transition to elementary school is “scary” for them because of the many unknowns. Says Jeff, “When it comes to people with disabilities, those with Down syndrome — like Kira — are probably the ones that people are most comfortable with. That’s because they tend to be viewed as happy and easygoing. And, sure, there’s a real advantage in that.” However, he adds, while they may be accepted, and even valued, “they’re still not seen as full participants in society.”
In many ways, Kira and other people with Down syndrome have far better prospects today than at any other point in history. The life expectancy of a baby born with the condition has increased fivefold since the early 20th century, thanks to medical advances and better social supports. So it’s something of a paradox that the number of Down syndrome births could soon start falling as a new generation of prenatal tests makes it easier to identify potential genetic anomalies. Far safer than the traditional invasive procedures that carry a slight risk of miscarriage, the new tests will allow more women to make decisions about their pregnancies as early as the first trimester.
The potential popularity of this new testing raises important questions, however. Disability advocates fear that the technology will make it easier to screen out Down syndrome altogether. And they wonder what a future without any more Down syndrome births might look like. Will existing supports for individuals currently living with the condition wane? Will additional genetic tests follow, leading to the termination of fetuses showing signs of other disabilities? And what are the ethical implications of becoming a medically idealized society?
Down syndrome was first described as a condition by English physician John Langdon Down in 1866. It’s characterized by extra copies of chromosome 21 — three instead of two.
Approximately one in 750 live births — or 500 babies a year — are affected in Canada, according to the Public Health Agency of Canada.
People with Down syndrome have intellectual disabilities, usually mild but sometimes severe, and many children born with the condition experience thyroid, hearing or vision problems. They’re also at an increased risk for medical conditions such as heart disease, Alzheimer’s and leukemia. Today, a baby born with Down syndrome can be expected to live to nearly 60. Diagnosable prenatally since the late 1960s, Down syndrome has traditionally been detected with invasive procedures such as amniocentesis, which requires a sample of amniotic fluid to be taken from the uterus. The test carries a small risk of miscarriage. But a simple, cell-free test now looks at traces of fetal DNA in a mother’s bloodstream. First introduced in 2011, non-invasive prenatal testing (NIPT) is relatively pain-free and can be performed even earlier in a pregnancy than amniocentesis.
NIPT represents a significant innovation in prenatal testing, according to Vardit Ravitsky, an associate professor of bioethics at the University of Montreal. She’s one of about 30 researchers taking part in the PEGASUS project, which examines new screenings for conditions such as Down syndrome. The multimillion-dollar project has found that NIPT is highly accurate, with an almost 99 percent detection rate for Down syndrome.
Today, a handful of American companies offer the test to Canadians at an average cost of $500. When it was first introduced in the country, NIPT was only available as an out-of-pocket service. More recently, though, Ontario, British Columbia and the Yukon have begun funding NIPT for pregnant patients deemed a high risk for fetal chromosome conditions. They recommend that positive results from NIPT be confirmed through traditional procedures such as amniocentesis before any decisions about pregnancies are made.
Last year, headlines around the world announced that Iceland was on the verge of becoming the first country where no Down syndrome births occur. While screening tests are optional, up to 85 percent of pregnant women take them, and just as many who receive a positive result decide to terminate their pregnancy.
“We have basically eradicated, almost, Down syndrome from our society,” geneticist Kári Stefánsson told CBS News in August 2017. Of course, Iceland has a population of only 350,000. Between 4,000 and 5,000 babies are born there every year — only two or three with Down syndrome. By comparison, about 6,000 American children are born with the condition annually, and an estimated 67 percent of American women choose to have an abortion if their fetus is diagnosed with Down syndrome. Termination rates in much of Europe are similar to Iceland’s, while Canada lacks reliable data.
The possibility of eradicating Down syndrome worries Chris Kaposy, an associate professor of bioethics at Memorial University in St. John’s, N.L., and the author of the new book Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies. Our society tends to view developmental disabilities as a medical problem, he says, but that misses the larger picture.
Kaposy, whose nine-year-old son has Down syndrome, describes the condition as “just an instance of normal human variation. Some people have three copies of the 21st chromosome; some people have two. The people with three are in a minority and they have certain health challenges, but that doesn’t mean that the condition itself ought to be pathologized.”
For Ryerson University professor emerita Catherine Frazee, a leading disability studies scholar and activist, the news from Iceland is troubling. “It is deeply distressing to me to hear such a bold affirmation of eugenic intent,” says Frazee, who was born with spinal muscular atrophy. “Selective termination on the basis of disability is a clear indication of the extent to which ableist ideologies infuse our culture. Ableism is a world view that presumes the centrality of non-disabled experience, and by extension presumes the inferiority of disabled experience. It is one of many forms of tribal supremacy to which human beings are prone.”
In the early days of Alison Senior’s pregnancy, she and her husband initially opted out of any prenatal testing. But Alison’s 11-week ultrasound showed soft markers for Down syndrome, and they agreed to the NIPT that was newly available in Ontario. They figured that a positive diagnosis would help them to better prepare themselves. The results came back “99 percent for Down syndrome,” Alison remembers. A genetic counsellor then recommended the more traditional amniotic fluid test, and it, too, came back positive.
Alison experienced what Jeff describes as a grieving process: “You have this idea that your child is going to be a certain way. And now you have this reality that maybe that’s not going to be the case.” As a special education teacher, Alison also felt guilty for harbouring doubts about the future, knowing fully what a “child with an exceptionality” looks like in the classroom. She was happy to instruct such students, she says. So why was it okay for other people to have a kid with Down syndrome, but not okay for her to do the same?
While the Seniors are pro-choice, ending the pregnancy was never an option for them. “It just never dawned on us,” says Jeff, who is an elementary school principal. Ultimately, they accepted the diagnosis and began to prepare for the birth, with Alison undergoing more ultrasounds and meeting with maternal fetal medicine specialists at Hamilton’s McMaster hospital.
Kira was born in Grand River Hospital in Kitchener, Ont., in September 2014 — a mere four days before her due date. There were no complications. Alison recalls feeling excitement touched with sadness “as the reality of her Down syndrome became more real.”
Earlier this year, in a pair of op-eds in the Washington Post, writer and mother-of-two Ruth Marcus explained the views of the “silenced majority” of women who have — or would have — chosen to abort a fetus with Down syndrome. “I can say without hesitation that, tragic as it would have felt… I would have terminated [my] pregnancies had the testing come back positive,” she wrote. “That was not the child I wanted. That was not the choice I would have made. You can call me selfish, or worse, but I am in good company. The evidence is clear that most women confronted with the same unhappy alternative would make the same decision.”
A 2007 Dutch study explored the motivations of women who chose to terminate their pregnancies after a prenatal diagnosis of Down syndrome. Researchers found that more than 60 percent of respondents considered the burden of having a child with Down syndrome too heavy for themselves and their families. More than 80 percent believed that the child would never be able to function independently, and they wondered about care arrangements after their own death.
Canada has no legal restrictions on abortion, and pro-choice advocates believe this reproductive freedom must be maintained no matter the circumstances. Simply put, abortions for genetic reasons aren’t about “eugenics or discrimination against disabled people,” the Abortion Rights Coalition of Canada argues. In a recent position paper, the organization describes such abortions as a personal choice based on a woman’s “ability and preparedness” to raise a child with a disability. “Pregnant parents are the only ones in a position to evaluate what is in the best interest of themselves and their potential child. The most loving and responsible parents will consider all options and circumstances and make the wisest choice for themselves, and their family. Society cannot compel people to forfeit their own rights (or life) to save the life of another. Such a sacrifice must be entirely voluntary.”
In 2014, notable atheist Richard Dawkins went as far as saying that it would be “immoral” to knowingly carry on with a Down syndrome pregnancy. “Abort it and try again,” he tweeted, in response to another social media user who had commented that it would be “a real ethical dilemma” if she learned that her baby would be born with the condition.
Later, defending his view, the British evolutionary scientist wrote that he would not apologize “for approaching moral philosophic questions in a logical way.”
Anthony Skelton, an associate professor of philosophy at the University of Western Ontario and the former associate director of the school’s Rotman Institute of Philosophy, takes a practical approach to the issue. He supports prenatal testing, not because of any moral obligation but as a “matter of prudence.” When it comes to distributing medical resources, “people have to make decisions about whom to treat, whom not to treat, and how aggressively and so on.” We base these choices “on what we think is the worth of a life, which may be a function of the quality of life that the person has in front of them.”
Skelton says the quality-of-life measure doesn’t necessarily exclude people with Down syndrome. “The question really is about where in the spectrum of good and bad lives people with Down syndrome fall.”
It was just over a decade ago when then-minister of foreign affairs Peter MacKay announced that Canada would sign the United Nations Convention on the Rights of People with Disabilities (CRPD). The Canadian disability community was on hand for the March 2007 signing ceremony. It had worked for five years to see the CRPD come to fruition.
For people living with developmental disabilities today, there are earlier intervention therapies, more inclusive education practices and stronger legal protections in the workforce, as well as various programs for assisted independent living. “There is no question we’ve seen impressive strides in the recognition of equality and human rights of people with developmental disabilities,” says Michael Bach, executive vice-president of the Canadian Association for Community Living (CACL), which has been advocating for people with intellectual disabilities in society since 1958. “What’s more challenging, though, is the realization of these rights.” Despite ratifying the UN convention, “our governments have not actually recognized it in terms of public policy… That puts pressure on families, who are left to carry the burden of support on their own.”
Bach says that people believe the “broad rhetoric of inclusion.” But the numbers don’t always bear this out. Only 40 percent of students with developmental disabilities are fully integrated into regular classrooms, he says. People with developmental and cognitive disabilities are also three to four times more likely to die preventable deaths and four times more likely to be victims of violence, according to Bach.
If Down syndrome birth rates begin falling, this will only aggravate the inequalities, he says. “I have no question that there will be a downward pressure on public investment in services for people with disabilities.” The message for people with Down syndrome is that “their genotype doesn’t fit.”
As genetic science advances, some predict that it won’t be long before for-profit testing companies promise to screen for conditions other than Down syndrome. This prospect should give us pause, warns disability scholar Frazee. “Ethically, once we embark upon a course of action that implicitly endorses a certain threshold for valued human life — meeting certain benchmarks for cognition and physical function — there is no telling of where this aspiration for human perfection will end. To paraphrase [social and political theorist] Isaiah Berlin, to make such an omelette, there is surely no limit to the number of eggs that will be broken.”
She rejects viewpoints like Dawkins’ that consider the lives of those with disabilities less valuable and full of suffering. After all, she points out, “where happiness is the measure, people with Down syndrome, in particular, are arguably greater producers of happiness than people who do not have [the condition].”
Nearly all people with Down syndrome are content with their lives, according to Harvard medical geneticist Brian Skotko, who co-directs the Down Syndrome Program at Massachusetts General Hospital. Skotko’s team surveyed people with Down syndrome, as well as their parents and siblings, in 2011. The findings are clear: 99 percent of people with Down syndrome reported that they were happy with their lives and loved their families, while 99 percent of their parents said that they loved their child, and 97 percent felt proud of them. Only 11 percent indicated that their child put a strain on their marriage, and just four percent experienced regret about having a child with Down syndrome. Siblings of people with Down syndrome similarly reported near-unanimous love and pride for their brother or sister with the condition.
The positive results would come as no surprise to Janet Charchuk, an Alberton, P.E.I., resident who has Down syndrome. Charchuk won a gold medal in snowshoeing at the 2017 Special Olympics World Winter Games in Austria and has raised awareness about Down syndrome at the United Nations. “My life is pretty good,” says the 35-year-old, who has also lobbied for supportive living apartments in her town. “I’m healthy and active in my community. I have a job where I volunteer working with kids. . . . I have friends and a boyfriend.”
As Charchuk puts it, “I’ve always been me, and people like me for who I am. . . . I’ve always felt accepted myself, but I know of others with different abilities who have told me stories about not being allowed to go to their community schools, or even being in an institution. But that’s getting better now with more education and awareness.”
Ethical concerns notwithstanding, even disability advocates like Bach concede that new prenatal tests are here to stay. But the CACL is pushing for a disability-positive approach to genetic testing and counselling. “The train’s left the station,” he says. “We’re not going to be able to restrict the development of these technologies. What we need to do is cultivate a set of values in which their application doesn’t reproduce, entrench and exacerbate discrimination on the basis of disability.”
South of the border, Down syndrome has emerged in recent years as a new front in America’s abortion wars. Pro-life lawmakers in North Dakota, Louisiana, Indiana and Ohio have moved to prohibit abortion in cases of Down syndrome, and similar bills are currently being floated in several other states. Critics say the laws unfairly restrict a woman’s right to choose. Indeed, a federal appeals court struck down the Indiana legislation as unconstitutional, and a district judge blocked the Ohio law last March before it could take effect.
Bioethicist Chris Kaposy has weighed in on the abortion debate, denouncing pro-life campaigners for their “propagandistic use” of children with Down syndrome. Instead, he argues that the pro-choice and disability-positive agendas are far from mutually exclusive. “People with Down syndrome tend to lead flourishing lives,” he told the Guardian in May. “Their families typically thrive. Perhaps more parents would choose children with this condition if they knew these facts.” Rather than restricting abortions, he concluded, society should empower families “to make choices in favour of parenting children with disabilities like Down syndrome.”
Ravitsky would also like to see greater “genetic literacy” and better guidance for parents dealing with any prenatal diagnosis. Doctors, she observes, may be overly focused on the health complications of conditions like Down syndrome, in part due to a fear of liability, as well as a lack of time, resources and specialized training. Ideally, she says, “you get all of the information and all of the support, and you make what to me is a truly informed decision” about whether to proceed with the pregnancy — one that takes into account “not just the medical aspects, but the experiential aspects of raising a child with that condition.”
Inside the Seniors’ house, a wooden sign reads, “Bless our home with love and laughter.” After cavorting with her soon-to-be classmates earlier in the evening, Kira sits comfortably on the living room sofa, eating grapes and watching Beauty and the Beast on her tablet for the umpteenth time. All at once, she stands up and clambers sideways on the cushions. She loses her balance a moment later, careening forward against the arm of the sofa and erupting into giggles.
Alison admires her daughter’s high spirits. “She is so full of life,” Alison says. “She’s a ‘Here I am’ type of girl. . . . ‘This is what you got.’ And it’s all good.”
To help with Kira’s developmental disability, Alison and Jeff regularly take her to see a music therapist, two occupational therapists and two speech therapists, the costs of which are only partly covered by provincial and workplace benefits. Although she understands spoken language, Kira struggles to articulate some h’s and g’s.
“Despite her limitations of speech, she can make herself understood,” Jeff says. “She’ll grab your hand and lead you somewhere. She’ll tell you that you’re ‘not getting it, Dad.’ She’ll try a bunch of times but will find some other way to communicate with you. She perseveres.” “[Kira] has a spark, and I pray that never dies,” says Alison. “Ultimately, I want her to be that person who will stand her ground and who will always make people accept her for who she is.”