April 17, 2011

Cameron Wells from CJAM radio interviews Marcia Rioux on the DRPI project. Listen to the interview on the NCRA website or read the transcript of the interview below.

Transcript of the interview

Handi-link created and produced by: Cameron Wells, CJAM radio

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Hello and welcome to Handi-link. I’m your host Cam Wells. Today I’m going to be chatting with Marcia Rioux, Director of Disability Rights Promotion international.


Cam: So tell me a little about DRPI

Marcia: When Bengt Lindqvist and I started this work in about 2000, thinking one of the issues we really had was that people with disabilities were not monitoring their own rights. While they understood what was going on and they knew what was happening, they weren’t really monitoring their rights in a systematic way. The problem for disabilities is generally people assume that every person tells their story as just a one off story, just an anecdote. So we thought there should be a way to systematically collect information and get people with disabilities themselves to collect information about what was happening to their rights.

Cam: Can you provide an example of the rights you want to emphasize?

Marcia: We’re really interested in looking at some of the rights principles and seeing how those apply. Do people feel like they’re discriminated against? Do people feel like they’re able to make their own choices? Do people feel like they have a real chance to participate? So those are the kinds of rights we’re looking at. Those are very similar rights to those that are in the Convention on Rights for People with Disabilities (CRPD). At the time we started there was no CRPD but since then with the pressure from the disability movement around the world there now is a United Nations Convention that specifies those rights.

Cam: Can you tell me a bit about what DRPI offers?

Marcia: What we have done is we’ve been able to develop a method of collecting stories and information on the way government policies and programs work. We have a couple of things, one is we have a template or a model of a way of collecting information to look at government policies and laws and individual cases around disabilities. Additionally, we have a way to do qualitative interviews with people who have disabilities conducted by people with disabilities to ask them what their lives are like (what goes on day by day). We then look at these laws and policies the government has set up, and what people tell us and see if there’s a gap between the two. Is there a difference between the lives people are living and the policies and programs that are supposed to make those lives better? We’re finding there is a big gap.

Cam: What disability do you most commonly encounter?

Marcia: Because we’re doing monitoring and not actually helping them in a traditional sense it isn’t any particular disability. Our projects are all run through disability organizations. They are completely cross disabilities.

Cam: Can you give me an example of a success story?

Marcia: We did projects in Toronto, Vancouver, Quebec City and Newfoundland. In each of those places we found out a lot about the differences between what was going on and what the policies were saying. We were able to work with about 25 people in each area, so they would know how to monitor and, track their rights.

They know how to do the interviews, the analysis so they can continue to provide information to governments and their own organizations/service providers about what is needed. We are also working in five regions of the world, doing the same thing but in each case we’re providing training for people with disabilities to be able to do their own tracking.

Cam: Can you tell me about the training?

Marcia: The training is about a week long, people learn a number of things. Sometimes we discuss what disability means and about human rights. We then move on to learning about how to do interviews, using an interview guide, going into the field, and how to set up a project. So the people who take this training learn not only to track rights but also, gain experience in doing qualitative research.

Cam: So you mentioned the surveyors have disabilities.

Marcia: All of the surveyors have disabilities. There’s nobody who does the work without having a disability.

Cam: So can you tell me a little about the surveyors?

Marcia: They’re chosen by the organizations we’re working through, but they cover all types of disabilities. We have people with sensory disabilities, physical disabilities, psychosocial disabilities and people with learning disabilities. So, it really covers the whole spectrum and they’re all ages and abilities.

Cam: Since DRPI began how has it changed?

Marcia: We’re a research project. We support disability organizations but we aren’t one. Since we started in the year 2000, things have changed a lot in that we do now have a Convention on the rights of people with disabilities. We’re seeing a great deal of rallying and lobbying from disability organizations, who now have, I think, a greater sense of their right to participate and engage in the setting of social policy. The countries that are taking the Convention seriously are looking at new ways of putting in place policy and law that respects disability rights, but it’s a long road. It’s not going to happen overnight. It didn’t happen overnight with other types of rights: The Civil Rights movement in the US for example or Women’s Rights. People are starting to recognize there is an entitlement to a place in society.

Cam: What do you foresee for the future of the project?

Marcia: We’re now in the process of setting up regional centres, which, will be in five areas of the world. We’ve been fortunate enough in each area to hire a regional coordinator from that area. We’re able to hold regional and some country training. So I think it’s a train the trainers program, it’s a method of finding some evidence based data that I think is really important or really grounded data that comes from people’s lives rather than strictly from impressions. I think that will be very useful, people can use that for their own advocacy. They can use that to write their reports to the United Nations.

Cam: Which areas of the world is DRPI presently working in?

Marcia: We’re working in Eastern Europe, Africa, Latin America, North America and The Asia Pacific. We also have contacts in the Middle East.

Cam: I’d like to thank you for taking the time out to do this.

Marcia: Thank you.

Cam: For more information on the project visit the DRPI website.

Handi-Link will be right back after these commercial messages so stay tuned.

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Welcome back to Handi-Link. I’m your host Cam Wells. Earlier in our show we heard from Marcia Rioux, Director for Disability Rights Promotion International.

Really this is a remarkable idea. It’s giving the chance to people with disabilities to serve as self- advocates. They’re going out and teaching people with disabilities about their rights and how to take a firm stance on them. People with disabilities are like any other group in society. They need to first recognize their rights and strengths and then take the appropriate action.

The fact that they’re working in such a meaningful way reminds me we’re always pushing, driving towards making things better. For this week’s song I’m going to play It’s Gonna Get Better, by Genesis.

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Cam: That was It’s Gonna Get Better by Genesis. This song really serves as a reminder to me that we as a society are always trying to improve; we’re always expanding in our definitions of who should be entitled to what consideration. An example is the need for accessible buildings or accessible parking. These things should be taken into consideration on behalf of people with disabilities. For projects such as DRPI these considerations are priorities.

The fact that they have people with disabilities helping those in a similar situation who might not necessarily know their rights speaks well of the sense of community that can exist between people with disabilities. They can play off each other’s abilities. Marcia mentioned in the interview people involved with DRPI are coming from all ability levels.

This is a great thing as not only can you play off each other’s abilities but learn from each other along the way. I consider this a remarkable project. Since a relatively recent beginning, they’ve expanded to other parts of the world to see what life with a disability is like there. No matter where we come from or whether we were born with a disability or it was acquired we retain the right to be treated as human beings.

If you’re someone with a story of life with a disability write: handi-link@cjam.ca

In my opinion Marcia struck on the perfect parallels during the interview. She mentioned things like Civil Rights and Women’s Rights, things like that. People with disabilities are like any other group in society. As we grow, develop new treatments, ultimately new ways of looking at life with a disability, it betters us all.

A historical example is the first wheelchair, which was basically a large piece of furniture with wheels it was heavy and impractical and at the time this was considered acceptable until someone said we have to do better. These people have the right to get around and contribute, so we have to find a way. That is the beginning of progress.

Helping people with disabilities acknowledge their own rights in a way demonstrates another right: the right to dignity, the right to serve as their own advocates and to act independently.

People with disabilities can speak to their condition, needs and abilities as well as anyone else. If you want to speak to life with a disability write handi-link@cjam.ca

There are a million examples of groups asking for basic rights in society.

Disability rights are being acknowledged but they need to be monitored, which is very important.

The great drawback to establishing policies is a lack of monitoring, it’s fine to say yes all buildings should have ramp so you build a ramp, it can’t stop there it then needs to be checked periodically for safety.

Once you do such a good thing as establishing what should be in place for a person with a disability, you have to recognize it would be easy to fall off the wagon so to speak.

Acknowledging the need for upkeep and safety and change if necessary is a large part of dealing with people with disabilities because things such as accessible buildings must be at their best to help the disabled reach their best too.

Things like having a back up plan for facilities in basements equipped with elevators, in the event of a power outage, and a need to evacuate, the one time expense of a portable ramp can be life-saving.

I’ve often speculated businesses and organizations should periodically monitor disability satisfaction, which I’m pleased to see Marcia and the project are doing this in abundance. This can be so simple as a quarterly survey asking the question, Are all your needs being met? If not how can we help? If the answer was considered financially impractical, a person with a disability has every right to challenge that by saying, This is what I need to be a contributing member of society.

People with disabilities have to feel they contribute in a meaningful way. Giving them pointless busy work accomplishes nothing. A person with a disability has the right to feel their life matters in the work they do, the hopes they have and the things they enjoy. In this way confidence is born. When a person feels strong and secure in their abilities, their disability matters less and less. A great example is athletes with disabilities when on the field they don’t stop to say This looks like a hard play, I don’t think I can do it. They never do it, as they’re out with people like them, who understand. It frees them in a way. The mind has a remarkable ability to free the body. People with disabilities do operate on different skill levels. It is important that we play off each other’s abilities and learn, from each other’s ideas.

It wasn’t just one man who invented the first practical wheelchair it was a collaborative effort. Historically that was the first time people with paralysis could get out and experience life. That is a right we’re all entitled to, not just to live but also to live to the fullest.

Marcia’s group embodies this by giving a voice to people with disabilities to say, This is what exists on paper. I wonder what the application is. How can this help me?

This emphasizes the strength in life with a disability. Once again if you have a story of disability life write handi-link@cjam.ca

This has been Handi-Link. I’m your host Cam Wells reminding you we’re all equal, so get on out there and have a great one. You’ve earned it.