2 Self-advocacy and getting to know your rights

Exercising your rights is not always easy, especially for people with learning disabilities. This is because information about people’s rights is not always made available to them in ways that are accessible. Sometimes information about rights is deliberately withheld from people to stop them asking difficult questions, or challenging things.

To exercise your rights, two things need to happen:

• you need to know what your rights are
• you need to feel confident or empowered to assert your rights.

Having the knowledge and confidence to talk about rights can be difficult for people with learning disabilities. This is where self-advocacy comes in. Self-advocacy is about speaking up for yourself. It is also about people with learning disabilities coming together to have more power and to make changes.

Activity 3 The beginnings of self-advocacy

Timing: Allow about 10 minutes

Watch this video to learn more about how self-advocacy started and what it means to people with learning disabilities, then answer the questions below.

Download this video clip.Video player: Video 4

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Transcript: Video 4

MAN

1972, the Union of Physically Impaired Against Segregation was formed by Paul Hunt, a disabled man who had developed his ideas whilst living in an institution. He and others had been struggling with the authorities of the rights of disabled people to control their own lives. UPIAS are recognised as the initial seed which began the social model of disability when in 1975, they stated--

NARRATOR

"In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society."

[MUSIC PLAYING]

MAN

These new ideas were empowering and challenging to the existing medical model. The social model encouraged disabled people to speak up for themselves and campaign for greater inclusion and equal rights. In America at this time, the People First self-advocacy movement was growing stronger. And in 1984, they held an international conference, bringing together advocates from around the world. Attending the conference was a young impassioned Englishman who was ready to bring these new ideas of self-advocacy back to the UK.

GARY BOURLET

It was the first ever People First international conference. And that was in Washington State. And I was astounded by how much confidence people with learning disabilities could speak publicly. And I wanted to be like them. That's what I wanted to do.

And I brought the idea of setting up a People First back in London. Writing over 400 letters, handwritten, four pages long, spending my own postage money out of my own benefits, and instead of actually putting my name signing off-- because I wasn't so confident to sign it off, I put John Hersov's name on there instead.

JOHN HERSOV

A group of us went from London and Essex to America in 1984 to this conference. We were brought together by the campaign for mentally handicapped people and Mencap. People from the Mencap participation forum, including Gary Bourlet, who's remained a fervent self advocate all these years.

GARY BOURLET

It was very tough times as well because even the parents and carers were sort of not happy about-- I think they were sceptical, afraid, that sons and daughters were silent and now they can actually speak for themselves.

JOHN HERSOV

It was still quite a novel idea, a new idea. So the fact for people themselves to be able to talk with confidence about what was important to them, for a lot of people, was quite hard.

GARY BOURLET

And then they were saying, ‘John, your group is special. Ours never could do that.’ It was all that sort of thing going on.

JOHN HERSOV

And if we don't ask them and involve them in whatever we are working on or doing, not only are we going to be missing a very big trick, but we will fall into the trap of doing to, and for, and whatever other people without finding out what's important to them.

End transcript: Video 4

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Video 4

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1. How did UPIAS help sow the seed for self-advocacy?

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Answer

UPIAS said that people were not disabled by their bodies or minds, but by how they were treated by society. They said it was time for disabled people to start talking about what they wanted and needed, and that society needed to listen.

2. Why was Gary Bourlet so excited about self-advocacy when he visited the People First conference in Washington in 1984?

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Answer

Gary talked about his surprise at how confident people were, how they were speaking out for themselves. He wanted to be like that and was inspired to set up a People First Group in London when he got back.

3. What were some of the early challenges for self-advocacy?

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Answer

There seemed to be some concern – even from parents – about people speaking up for themselves. Some people suggested that Gary and John’s group was somehow ‘special’ or ‘unusual’ and other people would not be able to do what they were doing.

It took a while for self-advocacy to get off the ground in the UK. But those early sceptics were eventually proved wrong. By the 1990s self-advocacy groups were set up all over the country, in all different types of places, by a range of different people. The numbers and power of self-advocacy groups has ebbed and flowed over the years, often due to policy and funding issues and in recent years many self-advocacy groups in the UK have seen their funding cut.