That daughter, now a 47-year-old known as Bernie, lives with Mrs. Bainbridge and her husband, Chuck, in Whitby, Ont. Mrs. Bainbridge has to perform daily tasks like combing her daughter's hair and cleansing her wounds from medical interventions. Her husband drives her to doctors' appointments and shopping.
Bernie, who was born with seal-like hands, no right ear and partial facial paralysis, has become an accomplished watercolour artist, but remains utterly dependent on her parents.
Mrs. Bainbridge has suffered a series of strokes. Neither she nor her daughter wants to contemplate the future.
"Both of us pray every night to please take us now. I don't want to leave her behind and she doesn't want me to die before her. She cannot fathom the idea of still living when we're not here," Mrs. Bainbridge says.
Canada compensated thalidomide victims in 1991; the lump sums of $80,000 on average were ex gratia, meaning Ottawa recognized no legal liability. At the time, no one knew how long the thalidomide survivors would live, let alone what kind of health problems they would face.
Mrs. Bainbridge says she felt powerless to challenge Ottawa's package. She also felt strong-armed into signing an earlier settlement with the drug's Canadian distributor; families at the time were forced to sign confidentiality agreements to keep the terms secret.
"I felt that if I didn't sign, I was going to get nothing," she said. "But if I had known really and truly the extent Bernie would be suffering for the rest of her life, I would never have signed. It seemed like a lot of money at the time, but it was really a pittance."
Basics like physiotherapy are too expensive for some. Louis Gaudry of Winnipeg says he would like to alleviate the back and neck pain that result from his handicap, but he can't afford the fees. The 47-year-old, who has tried unsuccessfully to land jobs throughout his adult life, also looked into buying a raised computer-keyboard tray to let him pursue his interest in Web design. At about $300, "it's out of my ballpark," he said.
Survivors have spent their lifetime paying for someone else's error. Some have learned to brush their teeth with their feet, or rely on outside help for something as basic as washing their hair because their hands can't reach. Their bodies are degenerating quickly. For Ms. Benegbi, the simple task of pulling on her socks is an excruciating daily challenge, requiring her to double over to reach her feet. She is exhausted by the time she has finished getting dressed in the morning.
To the War Amps, which led the campaign for federal government compensation for the thalidomide victims, Canadian authorities cannot walk away from their responsibility in the tragedy.
"The consequences of this particular government mistake were just so disastrous," says Ottawa lawyer Brian Forbes, legal counsel for the War Amps. "When you think of the problems [the victims]have had with employment, housing, transportation, just their enjoyment of life - it goes on and on. I'm not sure the government should ever feel, 'Well, we've closed the book.' I think the government really has an ongoing obligation.
"Victims feel that the government surely could at least put forward some kind of apology for their gross negligence."
Roger Vadeboncoeur, a doctor at a Montreal rehabilitation clinic that treats many thalidomide patients, says he has been struck by the survivors' resiliency. Still, they are aging prematurely, he says, and a 2002 study of 26 thalidomide victims found that many faced health problems.
"These people have touched me. They complain very little and many have succeeded despite their handicaps," said Dr. Vadeboncoeur, a physician at the Institut de réadaptation Gingras-Lindsay. "But the more the years go by, the harder it will be to cope because of the pain. They may have been all right at 25 or 30, but it's getting more and more difficult dealing with the stress of day-to-day activities."
The thalidomiders' group has retained an Ottawa law firm to collect up-to-date data on their living conditions, with an eye to seeking financial help so they can live out their remaining years decently.
But in many ways, the apology means even more.Report Typo/Error