Penny Collenette, a former senior fellow at the Kennedy School of Government and former director of appointments in the Prime Minister's Office under Jean Chrétien, is an adjunct professor in the University of Ottawa's faculty of law.
There are 35,540,400 Canadians. 95 are thalidomide survivors.
These tremendously strong individuals have endured physical, mental and emotional battles that many of us can only imagine. They were not even alive when their mothers, on the advice of physicians, took medication to combat the sometimes rough symptoms of pregnancy.
Through absolutely no fault of their own, but rather through the fault of Canada's Department of Health (which in April, 1961 authorized a drug in spite of evidence that it was causing birth defects), they were born with rare disabilities, including severely underdeveloped arms and legs, as well as defects of the intestine, heart and blood vessels. In other words, they were medically challenged both inside and out.
People who live with disabilities learn to be tough, to adapt to conditions, and to accept what they cannot change. It's called survival. And it's a testament to their courage and resilience that they have survived, though times must have been hard for this unique cohort. Technology was not advanced when they were growing up in the sixties and seventies. Simple acts were very difficult.
If you wanted to watch the news, you needed to be able to get up and turn on a television. There were no remote controls to press with a finger or a toe.
If you wanted a clerical or administrative job, you needed to be able to physically bash on a typewriter -- something that would be very difficult without arms.
If you wanted entertainment, you needed to go into a movie theatre and sit in a seat which was designed for people with legs, not stumps.
If you wanted to call someone, you used a rotary phone – hard to do without arms. Bluetooth was far in the future.
And if you wanted to be a competitive athlete? Well, in Canada it wasn't until the 1976 Torontolympiad, which later became known as the Paralympic Games, that athletes with an amputation or visual impairment had a forum in which to compete, and it wasn't until 1981 that the Canadian Federations of Sports Organizations for the Disabled was established.
In other words, there was little or no infrastructure for these unlucky 95. Worse, there was miniscule help and that help was negligent and uncaring.
The original compensation award in 1991, to 109 individuals, was $52,000 to $82,000 per individual. Disability devices, not to mention salaries of caregivers, would have eaten through that settlement in little time. What was worse, the survivors had to sign a waiver declaring that they would not sue the government. It is truly shocking that this kind of punitive agreement was legally permitted.
Over the years, these 95 remaining individuals have aged. While many seniors routinely have their knees or hips replaced with state-of-the-art medical treatments, these senior thalidomide citizens cannot replace limbs they never had. Instead they struggle for dignity, fairness and support in their final years.
In November, 2014, after a fruitless round of letters and calls to the Minister of Health from the Thalidomide Survivors Taskforce (originally founded in 1987 to support the efforts of the War Amputations of Canada), The Globe and Mail decided to headline the story and the situation. The survivors were asking for a $250,000 lump-sum payment and an annual pension (as Germany has managed to do). A pension would have provided them with stability and choice, taking uncertainty out of the equation.
Within a week, the country had mobilized in indignation and so had the House of Commons, which voted unanimously to provide "full support" to the survivors. The Minister and the government immediately agreed to a meeting. Hopes were high. People breathed a sigh of relief.
If people expected anything, they may have assumed that within a short period of time, the Minister and the president of the Thalidomide Victims Association of Canada would hold a joint press conference on a weekday morning, announcing some type of consensual agreement.
But that didn't happen. Instead, three months after the fact, the minister chose to have her own press conference to announce her own side of the settlement. It offered $125,000, not $250,000, plus a fund of $168-million fund to which the survivors must apply for "extraordinary medical needs" -- no doubt through an excruciatingly long extraordinary bureaucratic process. Applications cannot begin until next year.
According to reports, the minister gave less than an hour's notice of her announcement to the Thalidomide Association and for whatever reason, she chose to release it on a Friday afternoon -- a timing traditionally used to hide, rather than highlight, an announcement.
Aside from the disgraceful lack of courtesy shown to the Association, there was a reference to a mysterious third party who will apparently administer this fund. Who will that be? Will the government play a "father knows best" role without representation from the Thalidomide Association? How will the fund be administered? Is it an endowment fund? Will there be an appeal process, in the event of a rejection? Will there be an advisory committee? Was any thought given to the use of technology to make it easier for applicants?
We don't know any of this because the minister was not forthcoming. Was this announcement simply a staged show, full of smoke and mirrors, designed for show and not substance? Whatever the strategic reasons, it is not enough.
95 Canadian thalidomide survivors don't deserve better. They deserve the best. They haven't got it yet.