by Michael Kennedy & Patricia Killius
(Recorded and Edited by Deborah Olson, 1986)

As self-advocacy coordinators at the Center on Human Policy, we speak to professionals, parents, and the general public to tell them that disabled people have rights. We want them to know that we can make decisions and speak out for ourselves.

We also teach people with developmental disabilities and mental retardation that they have the right to self-determination and to live as independently as is possible for them. Both of us lived in institutions for years, so we know what it’s like for others.

One way we do this is to facilitate self-advocacy groups. In these groups, people like ourselves learn to speak out for themselves. People with all kinds of disabilities participate in the groups. Some of them still live in the institution, but most live in group homes, supportive apartments, with families and even independently.

In July, 1985, we held the first New York State conference of self-advocacy for people with developmental disabilities. The purpose was to give people with developmental disabilities the chance to speak out about their rights and the things they want to see changed. We also wanted professionals to see that we have a voice of our own. We want the same rights as everyone else. Nothing more, nothing less.

Definition

Self-advocacy means people with developmental disabilities speaking up and speaking out for their rights. For people who can’t speak, it may mean having someone interpret what you want to say. People with developmental disabilities should have the right to speak up and teach other people about their rights. We won’t always have someone to look out for us.

People need to listen to what we want even though they might not want to. Speaking out can be taking a risk. Sometimes you’re afraid a staff person might say no.

Some People Can’t Speak for Themselves

Some people can’t talk or communicate easily with others. Other people may be really shy or uncomfortable talking. This shouldn’t mean they can’t be part of everyday life. Someone with a severe disability can still live a good life in the community even though they can’t express themselves very well or communicate their wants clearly. They may need a friend who can speak for them. The best spokesperson for someone who can’t speak may be another person with a disability who can speak, maybe a friend of that person. Another disabled person knows where that person is coming from; they’ve had similar experiences. Professionals may say they understand, but in reality they haven’t lived as we have and haven’t had the same experience.

MIKE: Ted and I were in the same institution together many years ago. When we met again recently I could still understand him, even though he has really difficult speech and it’s hard for other people to understand him.
PAT: Even for someone who can’t speak at all, another person who’s disabled is still a good spokesperson just because you know what it is like to be a consumer or to live in an institution.

Self-Advocacy is About Having Choices

Living in the institution you don’t have the freedom to make choices. You are told what to do, for example, when to eat, when to sleep and when to get ready for work.

You have no choice about going places when the whole unit is going someplace. You can’t go out on your own.

MIKE: Now I can do things with other people or by myself if that’s what I want. At least I have a choice.

Self-advocacy, or speaking for yourself, is a big part of living in the community. People with disabilities who live in the community should have the right to make their own decisions, just like anyone else. For example, we should have the choice of who we want to work for us. In our apartment, the director will interview a person who wants to work with us. Then she will bring them to the apartment and have us interview the person. We ask things like, “Have you ever worked with disabled people before?” “What kind of recreational things do you like to do?” We ask this so that we can get a good idea of what they like to do and if we like the same thing. We also ask how they feel about transferring someone from one chair to another. We ask to get an idea of how they feel about being with us.

After these questions, the person asks questions of us. We’ll give them answers about where we work and what we do.

The following day we get together with the director and talk about that person. She takes our ideas to the board of the agency and the board usually approves who we recommend for hiring.

The choices you should have are choosing your own friends and having your friends come to see you, going to the church of your choice when you want to go, deciding whether to have a real job instead of working in a sheltered workshop or activity center, and lots of other choices. Sometimes people with developmental disabilities need help making choices, or even knowing what their options are. Parents, staff, and friends can help people learn about choosing, if they pay attention to the person.

Self-Advocacy Means Having a Say About Your Services

People with developmental disabilities can and should have an impact on services by participating in agency boards and councils. It’s important that we share our ideas because we use some of the services. Many of us have been getting services from agencies all our lives. We know that some services are good because they try to meet our individual needs. We also recognize that some services are bad because they don’t integrate people in the community and they don’t provide programs to help us become more independent. We can tell agencies what kind of things we need to live and grow in the community. But it’s not enough to have just one consumer on a board. If there are several with different disabilities or different experiences, providers will know more about your needs.

When we first got our self-advocacy jobs a lot of agencies asked us to be on their boards. They didn’t seem to be aware of other people with disabilities who could also speak on their programs.

PAT: The same two consumers shouldn’t be on all the boards in the community, because they’re going to get tired of hearing from us. There are other consumers who would learn a lot from the experience and also contribute to the board.

People with disabilities might need special supports to be on a board. For example we might need aides to help us get to the meeting, to help us with personal needs, for writing and reading, for speaking for someone who can’t speak or interpreting for someone who can’t hear. It’s important to have this support so that we can participate on the board. Without this support we’re just a token.

Learning About Self-Advocacy

All disabled people have the right to learn to speak for themselves. It’s important because there will be a day when our parents won’t be able to speak for us. Disabled people can teach each other how to speak for themselves. Role-playing a variety of problems or situations is a good way to learn self-advocacy.

There’s more strength in forming a group. One individual speaking out is easily over-looked. If you have a group of people who want the same thing, you have a better chance of people listening.

This is what we did in Syracuse. We drew up a list of friends and other people we knew. We told them about self-advocacy and asked them if they wanted to become involved. That’s how we got started.

We brainstormed some issues and talked about issues at every meeting. For example, we talked about transportation problems and education.

To teach ourselves about our rights we used a tool called Rights Now! It contains cassettes, pictures and a slide show about different people in situations learning about self-advocacy. For instance, finding meaningful work instead of sheltered employment, finding time to be alone with your friends, or working out compromises with the people you live with. Rights Now! is not available any more, but you might be able to get it from your state’s Protection and Advocacy agency.

Ways to Start a Group

We started our groups through the College for Living, but not everybody has to do it the same way. There are many ways to start a group. First, you have to find a good place to meet. It should be easy for everyone to get to it. Then you have to make a list of people to be a part of the group. It’s OK to start small. You have to let people know about the meeting either by calling them or seeing them at work or where you live. You have to agree on a meeting date and time that would be good for everybody.

When you have your first meeting, you have to be sure that everyone feels comfortable. You should have people introduce themselves and maybe say why they wanted to learn about self-advocacy. You may have to explain about self-advocacy first. If you decide to use theRights Now! material, you’ll have to tell them about the cassettes and pictures. Or you could show a film, like the People First film, or a slide show, like Our Voice Is New (which we helped produce) about self-advocacy. After the film or slides you can talk about some of the issues, like speaking out, having someone speak for you if you can’t speak well, or what it feels like to be labeled mentally retarded.

We and the people in our group think that it is good to form a group because:

1. People aren’t always going to be around to make decisions for you, you have to learn to make your own decisions.
2. You can learn about each other, everyone has different needs.
3. You can work together for new opportunities for people with disabilities.
4. You can learn about your rights as a citizen.
5. You can help other people who can’t speak.
6. You can have fun by meeting other people.

By speaking for yourself you make other people–group home staff, government officials, and the general public, see that you are a person just like them, not a “disability.” Self-advocacy is a part of living in the community. Without it we might as well be shoved back into the institution.