Interviewer: Patrick
McDonagh
People First of
Canada AGM in Victoria,
B.C.
November, 2000
Paul Young © Linda Dawn Hammond, 2000
Patrick: Tell me how you got involved with People First.
Paul: I was involved with the cross-disability local chapter in Sydney, Nova Scotia, and had been involved about nine years, and that's where I learned about the issues around disability. One day, I was listening to a local phone-in show, and I heard a man by the name of John Cox talking about People First. I had heard at another conference, at the cross-disability provincial conference, about a man talking about People First, but had no more information about it. Then when I heard Mr. Cox on the radio, it sounded like something I should get involved in because I had been labelled handicapped and I had been in a sheltered workshop and in segregated schools before that. So I made a phone call to him and we met at a local hotel in Sydney and shared some thoughts and concerns. We started to develop People First of Nova Scotia. At the same time I heard of a national project committee trying to start People First groups across the country. I asked to get involved with that, and then sat on the founding executive of People First of Canada as the first vice-chair. Then, three years after, I became the president of People First of Canada. That's how I got involved, that's why I'm involved, or one of the reasons. One of the reasons it's important to me is because of the early life history I have had. I was very lucky to get out of what I call the cocoon of impossibility, meaning sheltered, segregated classes, workshops, the traditional services that people with intellectual disabilities receive.
I thought that now that I have the so-called good life, other people with my history should have the same opportunities. In a very quick capsule, I can tell you that, as I said, I was in a segregated classroom, and in a sheltered workshop. I spent 12 years there and met some people who were instrumental in teaching me and helping me to get into radio. I spent 18 years as an audio technician at CBC in Sydney, Nova Scotia. So I made big money, I've gone on a lot of trips, vacations to Florida, I even bought and paid for a house, learned how to drive a car, bought a car, all these things.
I've climbed up the mountain to where the freedom is: freedom of choice, freedom of association, freedom to be secure and, as I said, to make your own choices.
But not all the people with my experiences have had the same chances and opportunities that I have had.
Patrick: How do you break out of that cocoon of impossibility?
Paul: I was very lucky to have met the right people at the right time. I think that we need to put supports in place, for all life aspects: put supports in place for education, put supports in place for living in your own community, put supports in place for having your own place - whatever aspect of life, there needs to be support around that so a person with a label - whatever the label is at that time - will be given the opportunity to have choices.
The day I met Stewart Marsh, a doctor who owned a private radio station, I asked him if I could hang around there and run errands. He gave me a job at $25 a week so I wouldn't lose my paycheque. Then I met some people who were at CBC, including a technician at CBC, Walter Pretty, who took me under his wing to teach me how to be an audio technician. He not only taught me how but helped me to become qualified to get a full-time job at CBC. That was all voluntary.
I think that programs of support need to be set in place so that we can have a good life and have freedom to make our own choices. For people to start doing that with the kind of experiences I have had is getting involved not with self-advocacy, because I think it's different, but with People First, which is an organization of people with the same history, talking about their stories, listening to each other, relating to the experiences or learning from the experiences. That gives us the strength to say as a group, "this is what we want."
Patrick: How is that different from self-advocacy?
Paul: Well, I think that self-advocacy is more around people advocating for themselves. There's nothing wrong with that, but there's always strength in numbers. I think a lot of areas within the movement of People First, or in the outer circle of People First, people have become known as "self advocates." Whether you are disabled or able-bodied, we all advocate for ourselves. The term has become a distinction; instead of using the "r" word or instead of using "developmentally delayed" or "intellectually challenged" or whatever, being a "self-advocate" has become the new label. So [a single self-advocate] is not as effective as a strong consumer driven movement like People First. That's my belief, that's where I stand, that's what I believe in and that's what I fight for every single day of my life.
Patrick: And you are now leading the Council of Canadians with Disabilities.
Paul: Just last June (2000) - I should know the date, I believe it was June 11 - I become the Chair of the Council of Canadians with Disabilities, which is where I originally started from, the cross-disability consumer movement. It's a national organization of people with disabilities speaking for themselves, "having our own voice" as the slogan says, and telling society that we want the support, we have views, here's what we think. We have been identified as persons with disabilities and we know best what we need. The word "consumer" refers people with disabilities who consume services, whatever the service agency, whether it be CIB [Canadian Institute for the Blind], or the Canadian Paraplegic Association, or whatever association provides services. People with disabilities consume those services. Before, professionals spoke on our behalf - doctors, professional organizations such as the March of Dimes - and those agencies were run by people without disabilities.
Patrick: Do you see this as a rights movement as well?
Paul: Oh, it's definitely a rights movement.
Patrick: I understand the notion of consuming the services, but is it important to articulate that this is fundamentally a human rights concern, that these services have to be provided as a human right?
Paul: Well, it's not just the services but also the opportunity to advance as an individual; for instance, maybe not have to live in some service-oriented place, if someone needs to have their own apartment or house, or whatever. It is more about rights for the person, and rights for the sector that is advocating for these rights. It is very similar to the civil rights movement in the United States. In some ways there are the same issues, and similarities of how to approach the issues. For me its quite exciting because it's not just what I said about wanting other people to have their lives changed and have the opportunities that I've been lucky to have, but to think that people with disabilities are actually speaking out and saying they want their rights. It's a very pioneering thing. Far be it from me to say, but I deeply believe that in a hundred years time the people who are involved in this right now and in the past may be written about or talked about, in how visionary they were. That's my take on it. It's a struggle...
I think you asked me what are the challenges and issues we've faced.
Patrick: Yes, I'm interested in knowing about that - both in specific terms, with specific issues, and generally.
Paul: Well there are a couple of issues, and the obvious issue is to get beyond the stigma of being disabled. And how society has viewed us, is viewing us, it affects the people with my history, it affects people with any disability. People's attitudes have become more of a disability than the disability. The belief that we can't do anything, that we aren't going to be able to contribute to society, that we have nothing to offer, has been brought forth by the charitable models of the agencies and well-meaning people in order to raise money to support or whatever, they have portrayed us in a very bad negative way. Another thing is that the focus is on the disability. They're always trying to fix the "problem," instead of supporting people to get on with their lives, supporting the disability, and finding out who the person is and what makes him or her tick as a person. That, not focussing on the disability, is the key. The "People First" name, the phrase "people first," says it all, because we are people first. The disability is there, yes. Support it. What do I need to be supported with the disability, how can I learn, what do I need to learn, what do I have to offer, what skills did the supreme being or God or whatever you want to call it give me? And that's the important thing, but our society is focused on the disability.
Society, with the global market, values people who make money, people who can present themselves well, look well, and fit the "perfect world"...but there is no perfect world.
The challenges, just to be sure I said it all, are the challenge within the disabled community to become organized, the challenge in the disabled community to get beyond the stigmas and the hurt that society has put on them, and to realize that we need to have our voice heard and to demonstrate to society that we are or should be equal citizens who can contribute to whatever country we are in.
Patrick: You mentioned the global economy and the competitive society - are we looking at something that will require different changes in economic perspective or different ways of valuing people which are not concerned with economics?
Paul: I think the economics is not the problem. It's the attitudes toward people that count. Once the attitude changes, the money will be there. They've been doing deficit reduction in this country and downsizing and putting our value on money, not looking at how do I make a citizen become whatever he or she wants. It's not just by providing them with jobs but providing them with a sense of who they are and what they are about. It may sound not appropriate these days, but people have lost a sense of what it means to be a Canadian. There was before a sense of how could we help those who are not as fortunate as us, and I don't mean in a charitable way, but making sure that the lower end of the scale is not so far from the higher end of the scale. That's been done away with. The poor get poorer and the rich get richer. No-one is taking care of the lower end of the scale and making sure it's not too low; instead, it's the survival of the fittest. That doesn't help people with disabilities.
Patrick: That doesn't help a lot of people - it's interesting because concerns like the one you just raised make this a really broad issue that affects a lot of people, not just those with disabilities.
What about the specific issues?
Paul: In People First right now, and in the CCD, it's the Latimer case. Other people perceive that people with disabilities are suffering, or that, especially if they are non-verbal, they are no use to anybody. Because of the values that society now has, people are quite frankly in very great danger. No-one should have the right to decide who should die and who should live. I believe that firmly, and I'm very concerned. The Latimer case is going to be very crucial to how we can change society's attitudes toward whether people are accepted or not accepted, and who decides what is suffering.
[Note: in January 2001, Robert Latimer's appeal was rejected by the Supreme Court of Canada, which ruled that he must serve a ten-year sentence for the murder of his disabled daughter Tracy. The verdict remains controversial as many Canadians support Latimer's claim that he was performing a mercy killing and thus should not receive a jail term.]
Patrick: That's a fascinating problem because a lot of people perceive "difference" as a form of suffering.
Paul: Yes, well, if you don't measure up to the well-dressed, well-kept, healthy, pretty, beautiful - whatever the phrase - then you must be suffering, you must be different and we don't want difference. And yet society says it wants difference.
Patrick: And it would fall apart without it.
Paul: Well, if we were all the same person, it wouldn't be very good.
Patrick: Thank you, Paul.
NOTE: Visit Paul Young's personal WEBSITE at:
http://youngandassociates.homestead.com/Index2.html
Paul Young© Linda Dawn Hammond, 2000
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