A life’s work: Jim Derksen and the fight for disability rights
Jim Derksen was only six years old when he – along with 9,000 other Canadians – was struck by the polio epidemic of 1953.1 Derksen survived an`1d has been using a wheelchair for personal mobility ever since then.
Derksen has worked with disability rights organizations here in Canada and across the globe – and his efforts have helped to change the world. He was one of the Canadians who played an instrumental role in helping to create the United Nations (UN) Convention on the Rights of Persons with Disabilities. The 10-year anniversary of this Convention is being marked around the world on December 13, 2016. Derksen is also a member of the Canadian Museum for Human Rights’ Inclusive Design Advisory Council (IDAC), which provides analysis, identifies gaps and gives feedback to the Museum on a wide variety of issues relating to accessibility.
In our interview, Derksen told me about how he became involved in working for disability rights, his experiences contributing to the UN Convention of the Rights of Persons with Disabilities and his thoughts on what are the new frontiers for disability rights in Canada.
Can you tell us about how and why you first became involved with the disability rights movement?
In the early days of my organizing, I learned to reject the shame that too many people with disabilities feel when faced with social rejection. For a short while, I was inclined not to mix with people who were like me because I saw how excluded those people were. When I went to university, I ended up living with a blind man – and so I got interested in his dilemma. He usually didn’t get his audio textbooks until about January or February. He had to coordinate many readers and note-takers, which was very onerous. When I left university, I got involved with meeting the needs of blind folks. I set up an organization to read textbooks and provide those books in an earlier way, in a high-quality way, not only to blind people, but to dyslexic people who couldn’t read as well.
After that, I began to see other people with other disabilities and I realized how excluded they were and how many barriers there were to their participation. I began to work with an organization that was pioneered by the Government of Canada, under the leadership of Pierre Elliott Trudeau, called the Company of Young Canadians. We were community organizers working in a variety of marginalized populations. We organized what is now called the Manitoba League of Persons with Disabilities. One of the big barriers for wheelchair users was that the public transit services were inaccessible. I remember we lobbied both the provincial and the city government, making the point that, like other taxpayers, we were subsidizing the public transit services for people without disabilities – but the design of the buses didn’t allow us to enter. The assumption in the public mind was that non-disabled people were subsidizing disabled people, but we kind of turned that on its head by pointing out we were subsidizing services for non-disabled people. That led to Handi-Transit services as well as ramp-equipped buses in town. As a movement, we kind of cut our teeth on this issue – more equal access to public services.
I went on to develop organizations across Canada, or to connect with people that were developing them, and to develop a national coalition, currently called the Council of Canadians with Disabilities (CCD). By 1980, we began to provide leadership to an international movement to develop a UN organization that would represent the needs of people with disabilities. That organization – Disabled Peoples International (DPI) – was founded in Singapore in 1981, but the office of the steering committee secretariat was in Winnipeg, Manitoba and I headed up that office. Currently Disabled Peoples International has member organizations in about 130 countries.
You were directly involved in shaping the UN Convention on the Rights of People with Disabilities. How did you get involved, and what was your role?
When the Council of Canadians with Disabilities was faced with the idea of a new convention on the rights of people with disabilities, we did not have an overwhelmingly positive response. The thing is that people had a hard time seeing our needs in the rights framework. Previous UN declarations on the rights of people with disabilities seemed to accept a lesser level of rights than the Universal Declaration on Human Rights (UDHR) in 1948. We finally recognized, however, that a new convention could combat ignorance and provide context for the rights outlined in the UDHR. On those grounds, we agreed to help develop a convention.
We created a new organization specifically to work within the UN to develop the Convention. That coalition is called the International Disabilities Alliance. Using the various national members of all of these international organizations, we were able to lobby governments throughout the world to endorse the Convention and to participate in the drafting of it. In Canada, we invited about 18 national organizations of people with disabilities to meet with us on three or four occasions to hammer out the wording that we would recommend to the federal government and also the Canadian delegation to the UN.
So I played a role in developing a consensus of the 18 Canadian disability organizations, but I was by no means alone. There were many people with various disabilities that brought their insight and experience to the floor. The papers we developed in those pan-Canadian meetings were well represented to our national delegation to the UN – and in fact, members of our working groups accompanied the delegations from Canada. And then finally, we worked to convince the Canadian government to sign on to the Convention. We weren’t always sure that we would win the day on that, but we did.
There were some very difficult things to achieve consensus on. For example, in Canada, it’s very deeply understood that each individual has the right to consent, or not to consent, to medical treatment, but that right has never been fully extended to people with mental health disabilities – and it’s still a very difficult issue. In fact, Canada’s signing on to the Convention on the Rights of Persons with Disabilities is subject to two reservations – one of which is that people with mental health conditions might have decision-making rights, but only if friends or members of their family would support their decisions around medical treatment, or would stand in as a substitute to make decisions on their behalf. We stood behind the people concerned with mental health in asserting their right to decide whether to agree to treatment or not on an individual personal basis, and the Convention itself calls for that. But Canada so far has reserved the right to interpret this in a conservative kind of way.
The other reservation is where the Convention calls for each member state to develop a monitoring device and a coordination device – that is, an office with some power to see that the Convention was implemented. That was never really established in the way that it had been envisioned in the Convention. The Government of Canada has delegated some additional duties to the Canadian Human Rights Commission and to another national office, but it’s just loading on another task to existing organizations that are already busy, so it’s a poor substitute.
December of 2016 marks the 10th anniversary of the adoption of the Convention on the Rights of Persons with Disabilities (CRPD) by the UN’s General Assembly. Canada ratified the CRPD in March of 2010. A few days ago, on December 1, members of Canada’s disability community met in Ottawa to work on a shadow report that they will submit to the UN Committee on the Rights of Persons with Disabilities. The report, in addition to the Government of Canada’s own report, will review Canada’s progress implementing the CRPD since ratification in 2010.
The shadow report will answer, from the community’s perspective, many of the questions the Committee posed to Canada in September 2016.2
This December marks the 10th anniversary of the Convention on the Rights of People with Disabilities – why do you think it’s important to mark this milestone?
I think it’s important to keep the Convention in the minds of people. I mean, we have committed by signature to honour this Convention. We are reporting on it and we are being compared to other countries. The Convention itself is a good articulation of the needs of people with disabilities. And if we don’t remember that those needs are there, and that they’re not met, we’re less likely to act on them. There have been improvements in many areas and most of these are articulated in the Government of Canada’s report to the UN committee. But there are many aspects of the disability experience that are not spoken to in that report. All of what is written in the report is true, but there are many things not addressed. It should be improved.
What is the new frontier in the struggle for the rights of people with disabilities? What comes next?
Well, there are many frontiers – but I think in Canada, one of the really glaring kinds of shortcomings is for disabled people who have Treaty status.3 Many of the Indigenous people in Canada are in a Treaty relationship with the Government of Canada. For Indigenous people in a Treaty relationship, education and health care are provided by the federal government. However, Canada is organized so that provinces are responsible for education and health care. In Manitoba, non-Treaty people have the right to have a wheelchair if they need one – including a power wheelchair, if needed – and to have it maintained. It’s a provincial policy, and it’s a very good policy. But the Government of Canada is responsible for providing wheelchairs to people living on reserves.
Historically, they provided only one manual wheelchair and the maintenance was understandably slow and difficult, especially as First Nation reserves are often far away from urban centres like Winnipeg. So there were people with disabilities who had no way to move from bed to washroom or kitchen table for long periods while they were waiting for wheelchair maintenance – and if they were not able to use a manual chair, they needed to rely on somebody to push them around, because they didn’t get power chairs. That’s just a small example of important human rights improvements in service delivery. Another is home care. Through the provincial home care program, I have the many hours of personal care attendant services I need every day, but the Government of Canada provides little or no personal care attendant services to disabled people living on reserves. Indigenous people living on reserves should have better services, better support.
1 “The Story of Polio,” from the website of the Canadian Public Health Association, http://www.cpha.ca/en/programs/history/achievements/02-id/polio.aspx (accessed November 22, 2016).
2 For more information, go to http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fCAN%2fQ%2f1&Lang=en). This past summer, Audrey-Anne Trudel (COPHAN), Jewelles Smith (CCD), Bonnie Brayton (DAWN-RAFH Canada), Frank Folino (CAD), Steve Estey (CRPD Secretariat) met with the members of the UN CRPD Committee to help them frame questions for Canada. For Jewelles Smith’s perspective on the work that the company did in Geneva, please see http://www.ccdonline.ca/en/publications/chairpersons-update/2016/CRPD.
3 According to Statistics Canada: “Registered or Treaty Indian status refers to whether or not a person reported being a Registered or Treaty Indian. Registered Indian refers to persons who are registered under the Indian Act of Canada. Treaty Indians are persons who belong to a First Nation or Indian band that signed a treaty with the Crown. Registered or Treaty Indians are sometimes also called Status Indians.” http://www.statcan.gc.ca/eng/concepts/definitions/aboriginal4 (Accessed November 22, 2016).