Johanne Hébert survives an ordinary day at home through a series of acrobatic acts. She opens drawers with her toes. She brushes her blond hair by leaning over and running it through a hairbrush screwed into the wall. To take off her dress, she grabs the front of it in her teeth, and jerks her head backward in a swift motion.
Ms. Hébert performs these everyday feats because she was born without arms. The hands that come out from just below her shoulders are gnarled and twisted, ending in three fingers on one, two fingers on the other. Ms. Hébert, a quiet-spoken grandmother, lives inside a disabled body that is in constant – and increasing – pain.
“It’s very tough to be suffering,” Ms. Hébert, 52, says in her Montreal apartment. “I try not to show it too much.”
Ms. Hébert is a victim of the drug thalidomide. One day in 1962, her pregnant mother took a single pill because she felt nauseous. The doctor told her it was safe. The drug manufacturer said it was safe. The Canadian government okayed it as safe.
Thalidomide was not safe.
The “miracle” drug for insomnia and morning sickness was a hidden time bomb that worked its devastation in the womb. Children entered the world with flipper-like hands coming out of their shoulders. Others were born deaf, without legs, or with damage to their spines and hearts. Many more died, or were rejected by their parents.
“When I was born, my mother thought I was the Devil,” says Judith Pilote, who lives in Quebec’s Saguenay region, and was born without arms and legs. “She said she wanted to throw me in the garbage.”
The thalidomide scandal caused a furor in Canada in the early sixties, shocking a nation that trusted in the safety of medications and the federal gatekeepers who were supposed to screen them. The story has been largely forgotten, but its victims have never escaped it. Now almost all in their early 50s, many are exhausted and in pain, unable to work, and struggling to get by.
They are turning to Ottawa for help, launching what is expected to be an uphill battle. A detailed proposal submitted by thalidomide victims to the Harper government seeks a federal “survivor fund” to cover their growing medical and care needs. They argue that Ottawa sanctioned a drug that proved disastrous, failed to withdraw it for months after evidence of its dangers emerged, and still carries a moral responsibility to its victims. “They destroyed so many lives,” says Mercédes Benegbi, who heads the Thalidomide Victims Association of Canada. “They have to at least ensure that we can survive and age with dignity.”
Ms. Benegbi’s group submitted its proposal to Health Minister Rona Ambrose in September but received no response to it. Contacted by The Globe and Mail this week, the Minister’s office declined to comment on Canada’s thalidomide survivors or the association’s funding request, instead extolling the country’s record on drug-safety regulations.
Two of Canada’s 95"Thalidomide babies," Aline Vachon and Judith Pilote, discuss growing up with their deformities in this excerpt from a documentary produced by the Thalidomide Victims Association of Canada.
Canada as a global outlier
The association says that Canada’s 95 recognized victims face a health crisis. The number of survivors is shrinking – two have died this year alone; others have passed away silently over the years – and those who remain confront a future clouded by the drug’s legacy. After a lifetime of perseverance to cope with their disabilities – typing with their toes, washing dishes with their feet, working to earn a living on stunted limbs – their bodies are giving out under the strain. “We had the fight in us,” says Lianne Powell, a 52-year-old thalidomide survivor in London, Ont., born with one leg, one lung and one kidney. “But I am done fighting. I don’t have an ounce of energy left.”
Interviews with 19 thalidomide victims and family members from British Columbia to the Maritimes help shed a light on a group of people who quietly struggled to be independent through their adult years, often raising families and holding down jobs as they coped with their disabilities with determination and resolve.
But at middle age, many find that their pain is winning the battle over their resilience. “I always saw my handicap as a wall I could get around,” says Quebecker Nelson Emond, who, despite missing most of both legs and relying on prosthetics, worked at jobs ranging from gas jockey to production-line employee at Bombardier. “Now I see it as a wall I can’t get over.”
His decline began slowly. A few years ago, Mr. Emond started losing his balance. Walking became a Herculean task. He swallowed his pride and starting using a cane in winter. Then, last year, he had his groceries delivered for the first time because he could no longer muster the force to walk up and down supermarket aisles; one more piece of his prized independence crumbled.
“What’s going to happen when I’m not able to work any more?” he asks over the phone from his apartment in La Pocatière, northeast of Quebec City. “We have nothing to fall back on.”
Canada is becoming a global outlier in its treatment of thalidomide victims like Mr. Emond. The drug was launched by German company Chemie Grünenthal in 1957 as a “safe” sedative that was ideal for expectant mothers. By the time thalidomide was yanked off the market, it had created an estimated 6,000 to 10,000 damaged babies worldwide.
Today, countries with significant numbers of thalidomide victims have stepped forward with long-term support. In Britain, nearly 470 people get annual payments from both the British government and the successor of the drug’s distributor, totalling an average of more than $88,000 per victim per year. The German government gives its 2,700 survivors pensions that can reach more than $110,000 a year.
Ottawa gave Canadian victims a one-time compensation payout totalling $8.5-million in 1991. It came to $52,000 to $82,000 a person, depending on their degree of disability. The victims call it a pittance.
“Canada is the worst-off group of survivors that we have heard of, by far,” says Martin Johnson, who retired in May after heading Britain’s Thalidomide Trust for 14 years. Mr. Johnson tracks the status of thalidomide victims around the world, from Sweden to Japan, Brazil to Australia. “In Canada, it’s a double whammy,” Mr. Johnson says, “because neither is there a company supporting a scheme, nor is the government.”
‘Take it or leave it’
In the decades following the scandal, some Canadian victims reached confidential out-of-court settlements with Richardson-Merrell Inc., the distributor of thalidomide in Canada. Some families fared better than others, but the sums pale compared to the multimillion-dollar damages awarded in lawsuits against drug companies today. Families like Mr. Emond’s got as little as $10,000.
Meanwhile, the Canadian victims’ health woes are well-documented, their suffering written in grim statistics.
Four in five have witnessed a spike in muscle pain, and three-quarters say their health is declining, according to a survey by the association. Standing up for extended periods can cause extreme pain. Nearly one in four cannot care for their own hair. Just under half rely on friends and family for their needs.
The problems mirror those of thalidomide sufferers worldwide. “People are losing the use of the deformed limbs that they’ve relied on their whole life,” Mr. Johnson says, over the phone from England. “They’re deteriorating badly. They’re going down faster than people had anticipated, and they need more support. The cost of remaining independent is skyrocketing.”
Finances contribute to their worries. In the survey by the Thalidomide Victims Association of Canada, one in five said they no longer get a penny in compensation from either the drug’s distributor or the federal government. Among those who do, payouts are not enough to live on: Mean net income from compensation is under $14,000 a year. Most said they needed to work to get by, despite their infirmities.
Yet fewer and fewer are able to.
Paul and Peter Settle, twins born in Hamilton 52 years ago, grew up living by the motto that they could do anything an able-bodied person could do. As 15-year-olds in 1978, they were jointly chosen as Ontario’s Easter Seal Timmy, named for the disabled child in Charles Dickens’s A Christmas Carol who displays an “indomitable spirit.”
The twins still display that spirit. It’s their bodies that have ceased to co-operate. “My body’s wearing out. It’s taken such a beating,” says Paul.
Born with shortened arms and legs, Paul had to stop working as a library clerk at a high school in Hamilton this year because the job became too physically taxing. He used to wrestle, play trumpet and do stand-up comedy. Now, his pain has become so intense that it’s keeping him from sleeping. “I’m having more bad days than I’m having good days,” says Mr. Settle. “It’s finally taken a toll on me.”
His brother, born with shortened arms, and missing his right leg, worked for years at the War Amps offices in Toronto, but his health forced him to – reluctantly – leave the job. For most of the past five years, his life has been consumed by the basics of coping with pain. “It’s excruciating, but I deal with it,” says Peter, who lives in Milton, west of Toronto.
The boys’ parents received the grand sum of $20,000 from the drug company in 1967 for the damage caused to both twins. “At the time, it was ‘Take it or leave it’,” the twins’ 82-year-old mother, Maxene, says from Hamilton. “Now I think it’s a disgrace.”
Neither twin can afford small comforts to make their days more tolerable. Peter wishes he could see a chiropractor or get a housekeeper. For Paul, tasks such as shaving or changing a light bulb have become ordeals, and his legs start to ache after he stands for more than five minutes. He’s grown more dependent on his 23-year-old daughter and 18-year-old son, who lives with him. “I don’t want to be his burden,” Paul says. He wants to get back to work, and worries about the years ahead.
“All I’d like is decent compensation from Ottawa so I can survive, and pay my bills,” he says. “I’m trying to make my life as productive as I can. Ottawa is still responsible for our futures, and our futures are looking pretty grim.”
Canada approved thalidomide in late 1960, and the drug went on sale in April, 1961. Evidence had already begun circulating of its possible health risks, yet the Canadian Food and Drug Directorate did not remove it from pharmacies. It wasn’t until March, 1962 – three months after thalidomide was pulled off the market in Germany and Britain – that it was withdrawn from Canada.
“By placing an inadequately tested drug on the market and then failing to remove it immediately once its horrific side effects became clear, the agency and the distributor forever marred the lives of hundreds of victims and their loved ones,” the Thalidomide Victims Association says in its report to the Harper government.
Pain, and poverty
Canada’s failings are all the more glaring when compared to what unfolded in the United States.
There, a medical officer named Frances Kelsey – Canadian-born and educated, but working for the U.S. Food and Drug Administration – faced down the drug manufacturer and refused to approve thalidomide, insisting that the company’s testing was incomplete. Her vigilance kept the drug off the market and shielded untold numbers of families from danger. Ms. Kelsey, now 100, was awarded the United States’ highest civilian honour by John F. Kennedy in 1962.
Meet the 100-year-old Canadian doctor who saved America from thalidomide
Canada, one of the last countries to completely remove thalidomide from the market, has not apologized to this day. After a campaign by the War Amps in the 1980s, Ottawa agreed to its one-time compensation package. Victims of the drug, then mostly in their late 20s, were starting families and careers; the money was sunk into such pressing needs as electric wheelchairs and adapted cars. And then it was gone.
“At that point, people were starving and wanted to get on with it. We felt it was the best we were going to do,” says Paul Murphy, a thalidomide victim who lives north of Winnipeg, and was then the vice-president of the Victims Association. “We had no choice but to accept it. It was presented basically as, ‘This is what you’re getting.’”
Even at the time, victims sought long-term support for their health needs. Brian Forbes, who helped obtain the 1991 settlement as legal counsel at the War Amps, viewed Ottawa’s deal as a “first stage” that left the door open to further payouts. “We didn’t see this as a one-time settlement. We saw it as an initial stage of government fulfilling a responsibility,” Mr. Forbes, chairman of the War Amps executive committee, said from Ottawa. “We were very much mindful that these victims were dealing with an unpredictable life – and maybe a decade later, or 25 years later, they would face further complications that would require further government involvement.”
But Ottawa took exceptional steps to shield itself from future demands. Each victim who accepted the compensation money in 1991 was forced to sign a waiver agreeing not to sue the government “in respect to your being malformed by thalidomide.”
Ottawa’s conduct remains a sore point. “We’re all going to be dead, and the government is going to be rubbing its hands and saying, ‘We got away with it. We don’t have to pay for the tragedy we created in our own country,’” says Ms. Powell, of London.
Ms. Powell can no longer work: She was forced to give up her job in a call centre because sitting for extended periods was too painful. She relies on long-term disability payments from her former employer that will end when she turns 65.
Ms. Powell says she cannot afford medication to soothe her back pain or alleviate her asthma. She used to be able to walk with the aid of a crutch. Now she cannot make it around the park. “I feel like I’m living waiting to die. I just feel I’m holding onto anything I have, financially. You push and push and push yourself. You’re so fed up with pushing yourself.”
Montreal’s Ms. Hébert, who grew up in rural Quebec, used to bicycle, play badminton and cross-country ski. Now she can no longer put on her own socks. She spends hours each day lying on her couch, trying to alleviate the pain in her lower back and hips. Six times a day, she goes into the bathroom to inject a narcotic painkiller into one thigh, using her teeth to grip the syringe’s plunger and push down. Ms. Hébert, who lives in a 31/2-room apartment, dreams about having a caregiver come in to help with meals and housekeeping. She cannot afford one. “When I was young, I was able to get dressed myself. Not any more,” she says.
A ministerial sidestep
Then there is the psychological toll of living with physical deformities that caused such public horror. (“Your dark/Amputations crawl and appall,” wrote Sylvia Plath, in her 1962 poem Thalidomide.) Thalidomide victims in Canada are thinly strung out across the country, the vast majority concentrated in Quebec and Ontario. They remain rare enough in number that they still stand out.
“One important aspect that Thalidomiders are reluctant to talk about is their mental health,” Gavin Bamber, a 51-year-old from North Vancouver, said in an e-mail that he typed with his toes. “While it is embarrassing to need physical help from others and to suffer from physical ailments, it can be excruciating to deal with the psychological devastation of being not only disabled, but disabled in a manner that is fairly unique … we Thalidomiders have had to endure an extra level of being stared at.” The “psychological stress” can be daunting, he says. “People can be generous in their aid, but there is no quick fix for my thoughts, my emotional burden.”
Nor is the impact of thalidomide confined to the deformed babies it produced. Parents shouldered the financial and emotional weight of caring for disabled children and were often relegated to lifetimes of guilt, even though they were blameless.
In 1968, a B.C. mother named Joan Niblock wrote a magazine article about her young daughter, Alexandra, born with truncated arms after Ms. Niblock took thalidomide as a sleeping pill. “It will always haunt me, that for a few hours of sleep I had bartered my baby’s arms,” she wrote. Never emerging from the shadow of guilt that dominated her life, Ms. Niblock died in 2005.
“My mother never forgave herself; she went to her grave feeling guilty,” Alexandra Niblock said from her home in Chilliwack, B.C. Ms. Niblock, 52, says her mother had a nervous breakdown after giving birth to her. Altering Alexandra’s clothes by shortening the sleeves became a source of anguish. “She felt she was cutting my arms off each time,” Alexandra says. “She never got over that.”
The Thalidomide Association’s funding proposal, which would start with a three-year pilot project, seeks a lump-sum payment plus annual support averaging $100,000 per person a year. The fund would be run by an independent board, and the size of payouts would depend on victims’ level of disability.
So far, the funding request to the Conservative government has been met with silence. The Thalidomide Victims Association has been trying unsuccessfully to get a meeting with the health minister, Ms. Ambrose, since March.
Asked for comment by The Globe about the group’s request, Ms. Ambrose’s office did not address it. Instead, it vaunted Canada’s record on drug oversight, even acknowledging it came thanks to the thalidomide tragedy. “The thalidomide experience caused Health Canada to overhaul the Canadian drug-regulatory framework,” her office said in a statement. “As a result, Canada has one of the safest and most rigorous drug-approval systems in the world.
Yet there was no acknowledgment that the very children whose birth prompted the overhaul continue to pay for the fiasco, every day of their lives.
The victims’ campaign revives a tragedy that has begun to fade from the collective memory. Those who explain to strangers why they have fingers coming out of their shoulders are met with blank stares, or nods of vague recognition from those old enough to remember the scandal.
The neverending fallout
The person identified in media reports as the first thalidomide baby born in Canada was Kim Beeston, delivered in hospital in Toronto on Jan. 20, 1962. When she was six months old, The Globe and Mail featured a photo of her and her parents, Anne and Carl, holding their big-eyed, smiling girl.
For years, the media followed Kim’s exploits as she defied her disability. As a child, she was an avid swimmer and competed in wheelchair basketball. In 1979, she hitchhiked across Canada with her dog, Sam. In 1984, she camped in front of Toronto City Hall to press for wheelchair-adapted housing.
Then, Ms. Beeston retreated. Her body was spent. She became confined to a wheelchair and dependent on potent drugs to soothe her chronic pain. Finally, on June 27, 2003, alone in her one-bedroom public housing unit in Toronto, Kim Beeston died.
The coroner’s autopsy noted Ms. Beeston’s multiple surgical scars, spread across her body like a roadmap of thalidomide’s devastating march. It noted her four fingers on each hand, her shortened forearms, her “almost non-existent” legs and her “markedly deformed” feet and toes. Ms. Beeston was born with the damage of thalidomide, and its shadow trailed her to her death.
Then, the day after she died, her father took his life. Carl Beeston, 65, left a note addressed to his daughter.
“He was apologizing to her,” says Kim’s younger sister, Elizabeth Beeston. “He felt responsible that he couldn’t be there 24/7 to care for her. Ultimately, he was blaming himself.”
For Elizabeth, her family’s story is a lesson about the forgotten fallout of thalidomide, and the need to relieve victims’ suffering. The Beeston family’s tragedy began when Kim’s late mother swallowed a pill with her doctor’s blessing. The ripples of that single act never stopped.
“It’s just been forgotten here, almost swept under the carpet,” Elizabeth says of the tragedy. “But thalidomide destroyed a lot of families. I don’t think anybody should forget.”