There is growing recognition that people with disabilities should not only participate in research but also shape it.
The better question is how we can involve people with disabilities in the first step of research -- deciding what to research and how to research it, and deciding whether what we have is a question or is not a question. Researchers know that coming up with the right question is half of getting the right answer.
Hank Bersani, President, AAIDD
It is also important to make sure that people with disabilities receive the support they need to exercise power and control, both in their own lives and in decision making processes. An example of innovative adaptation comes from California.
Making My Own Choice is a real simple little handbook. The book tries to give as much flexibility as possible. It takes you through five major life areas – friends and family, health and safety, living options, and so on. Part of the book gives you the story of someone else and what they did - all real people who made real choices. The other part is where you put in your stuff. The picture book is designed to have you go through the stickers and pick the one that is more representative of what you want to do. We asked people, if you don't read, and you use these pictures, how can we make the pictures more flexible?
Another piece is an adaptation for people who sit on committees. We have people sitting on all kinds of committees and there are no adaptations. So now we are putting together a CD of different pictures and icons. We are field testing them with consumers. Hopefully, people across California will start to use them so that we have a common set. So, what is a picture of an agenda to me is a picture of an agenda to people in the other end of the state. So when a consumer travels and does different things at the local, regional or state level, they have a common understanding of what we are talking about.
Carol Risley, CA Office of Human Rights and Advocacy Services