I give quite a few talks around the country on self-advocacy. Most of those talks are to service providers and parents, although there are some people with disabilities in some of the audiences. One thing that amazes me still is that although self-advocacy has been around for a long time now, since 1974 at least, there are some people who don't know anything about it. When I talk about it, they have a really surprised look on their face like it is a whole new world. Most people are very open to hearing about it, and I get requests to send more information about it from the people in the audiences. In this article I will talk about some things I want people to know about self-advocacy.
Here is what Self Advocates Becoming Empowered, the new national self-advocacy organization, believes about self-advocacy.
We believe that people with disabilities should be treated as equals. That means that people should be given the same decisions, choices, rights, responsibilities and chances to speak up to empower themselves as well as to make new friendships and renew old friendships just like everyone else. They should also be able to learn from their mistakes like everyone else.
The self-advocacy movement was started by people with disabilities, especially people who had been in institutions and state schools, because they wanted their basic rights like everybody else. But before they could exercise their rights, they had to fight for the right to be heard and to have choices in their lives. They had to find out what basic rights they had, and then they had to begin to teach others--other people with disabilities, parents, and service providers.
Self-advocacy is for everyone. Some people say to me, "It is fine for you to speak for yourself, because you aren't as disabled as my son or daughter, or the people I work with." I disagree with them. I say, "Have you taken the time to learn what that person wants or might need? Has the person heard about their rights? Is he or she facing an issue that they need support with? What can the person say for himself or herself, and how can you help him or her express more? Or are you just assuming that they want what you want for them?"
A lot of times I find that people have not taken the time to ask, and have just assumed they knew what was best for the person. I had one parent say to me one time that she always made the decisions because it was easier than figuring out how to help her daughter communicate. I said to her that I didn't know what her daughter's disability was, but there had to be a way that she could actively participate in the choices about her life.
The first thing they would have to do is figure out a way for the mother and daughter to communicate with each other. Next would be to try to discover how the daughter could learn more about the choices she has, and then how she could make the choices. The daughter could be supported to make an informed choice of some kind, even one the mother might not make or feel totally comfortable with. This wouldn't have to be a big choice. We know there is always a risk factor when someone is making choices for themselves, but people still need the opportunity, even if they make a mistake.
When people tell me that I am "higher functioning" than the people they are talking about, I feel like they are telling me that I don't have anything in common with other people with disabilities. It's like they are putting me in a whole different category and saying that I don't have any right to speak. It upsets me because I take it that they don't want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven't had the opportunities to experience different situations in life.
Instead, they should be looking at how much each person would be able to offer if they were just given the chance to voice their wants and exercise their rights. For example, I recently visited a group home and heard a staff person say, "How do you like the way I decorated the house? The manager said I could do whatever I want." That told me that the residents didn't have a say in how their home would be decorated, when they could have been involved in planning and picking out the decorations. This is a simple example but who knows how things would look if the residents had helped with the decorating? And how will those residents learn to make other decisions if they can't be involved in how their home looks? I don't think she had even thought about involving them. Later on she said to me, "We give choices." But even if that is true, it leaves the staff people in control.
Self-advocacy has become popular, to the point that it has become a buzz-word that people use without really knowing much about it. Some of the dangers of that are that agencies can use the word to make themselves look good, or that people will pick a select few of us to be on every committee, to give testimony, and so on, without looking for other people with disabilities who might have something to contribute. Then they can say that they have consumer involvement, without really having it, because the same "consumers" are doing everything.
Another danger of not really understanding self-advocacy is that people outside of the movement, like parents or agency representatives or public officials, tell us what self-advocates should be doing. They are always saying, "You should testify about this," or "you should be working on that," without realizing that we need to decide for ourselves what we should be working on and how much time we can spend on what we choose to do. It is hard for us because most of us have been taught that we should please other people, not disappoint them by saying no. Often the advisors (these are people without disabilities who support us in our self-advocacy work) have to help us set limits and see that it is okay to set our own priorities.
The self-advocacy movement is international. There are organizations in Britain, Australia, New Zealand, Canada, Sweden, and other countries. There is a new book about self-advocacy all over the world, and I recommend it highly. It is New Voices: Self-Advocacy by People with Disabilities, edited by Gunnar Dybwad and Hank Bersani, Jr. It has chapters by people from each of the countries that I mentioned. They talk about their philosophies of self-advocacy, in their own words, and about its history in their countries. There is a whole section on the United States, but I believe it is also important to see how people in other countries think about it.
The common thread, to me, is that people with disabilities want a fair shake in life. We want the same things as everyone else. We don't want our lives controlled by systems and the people who work in them. We know that everyone has to follow some rules, but it is impossible to have a meaningful life if you are always controlled by other people. I recently wrote a chapter on self-determination (Kennedy, 1996, pp. 45-6) where I talked about this issue in depth. I will quote some of the part where I gave suggestions:
People involved in the self-advocacy movement help each other to advocate for things like power-sharing and system change. As a movement, we work on broad goals, like closing all the institutions in the country, but we don't forget the individual person with a disability who has problems in his or her own life. We support each other as much as we can, and because of this we have learned many lessons about listening and speaking up.
References
Dybwad, G., & Bersani, H. Eds. (1996). New voices: Self-advocacy by people with disabilities. Available through Brookline Books, P.O. Box 1047, Cambridge, MA 02238-1047. $29.95.
Telephone 617-868-0360.
Kennedy, M. (1996). Self-determination and trust: My experiences and thoughts. In D. J. Sands & M. L. Wehmeyer, Self-determination across the lifespan: Theory and practice (pp. 45-46). Available from Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD. 21285-0624. Stock # 238X, approximate price $35.00. Telephone 1-800-638-3775; fax 410-337-8539.
The preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.
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The system...needs to support the idea of teamwork and power sharing between people and their helpers. The system also needs to support the idea that people should be able to live how they want to, even if the professionals would live differently. The system is there to assist, offering guidance but not threatening us if we don't take the advice. This always means listening to us, really listening, and giving us feedback that is honest but respectful.
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