Thalidomide survivor Marie Harnois, posesat home in Drummondville, Quebec, March 29, 2015. The sculptures in the background are works she has created herself. The government is set to issue compensation cheques to survivors in the coming weeks.Christinne Muschi/The Globe and Mail
Marie Harnois gets around on a child-sized tricycle so crucial to her survival, she has given it a name: Arthur. It's a homemade device that she steers with her only arm and propels like a scooter with her one, misshapen leg.
Ms. Harnois, a victim of the drug thalidomide, has been using it since the age of 12. She is now almost 51 – and is finally hoping to buy a new one: Ms. Harnois received a $125,000 compensation cheque in the mail from Ottawa on Monday, marking the initial piece of a federal settlement that is historic in scope yet, in the view of its recipients, deeply incomplete.
For the almost 100 Canadian victims of the drug, born with missing limbs and other disfigurements that cast a shadow over their entire lives, the cheques represent tangible recognition from Ottawa for the damage caused by the federally approved medication. It is their first compensation from the Canadian government in almost 25 years.
Yet the cheques are not a cause for rejoicing: The $125,000 is only half of what the Thalidomide Victims Association of Canada had sought. And the victims remain in the dark and deeply anxious about how Ottawa's more crucial, long-term financial settlement will function and whether it will be enough to support them in their older years.
"I feel relieved today," Ms. Harnois said Monday from her home in Drummondville, Que. "But I feel insecure. I don't want to spend money I don't have. We have to keep a cool head."
The cheques are the fulfillment of the federal government's Dec. 1 promise of "full support" to the Canadians damaged by the German-developed drug thalidomide, which was prescribed as a safe sedative for pregnant women after federal approval in the early sixties.
The money is a source of relief for victims suffering from the severe deterioration of their bodies as they enter their early 50s. Many say they will use the emergency cash, which is tax-free, to obtain basic services that had been out of their financial grasp: a visit to the physiotherapist to ease their chronic pain, home care to help with cooking and cleaning, or something as fundamental to their dignity as the purchase of a Japanese-style toilet with an automatic cleansing system.
Ms. Harnois hopes someone can design her a new tricycle that is lightweight and perhaps has a hydraulic lift, so she can reach her kitchen counter – at only 3 foot 10, her head barely clears the top of it. Her current tricycle, cobbled together by her carpenter father, is made out of wood and metal and weighs about 25 pounds. Ms. Harnois, who is unable to stand because thalidomide mangled her body when she was in her mother's womb, also needs a new van that can accommodate her recently acquired electric wheelchair.
In a letter accompanying the cash, Health Canada tells the victims that the sums are "ex gratia," meaning they are being issued out of moral rather than legal obligation. The letter says health officials will contact them in the next few months about how a third party will administer the remaining sum, which will be for medical assistance and could come to as much as $168-million for the entire group.
The uncertainty about how the long-term program will function leaves victims in a form of financial limbo. Health Minister Rona Ambrose sprang the federal package on the victims this month with virtually no warning and little explanation. Already deeply distrustful of Ottawa, which had ignored their pleas for assistance for years, thalidomide victims fear they will be on the losing end of a deal.
Mercédes Benegbi, head of the Thalidomide Victims Association of Canada, is waiting to meet federal officials to discuss the compensation package details. Her group was never told why Ottawa cut the requested $250,000 lump-sum proposal in half.
"The hard work still lies ahead," Ms. Benegbi said.
"Canadian survivors of thalidomide have been abandoned for years. This is a balm," she said of the cheques, for which she expressed gratitude. "But it is just a Band-Aid being applied to a fracture. Nothing is settled until we finalize the long-term agreement."