Conversations with Self-Advocates: Part III
You may have noticed that here at the Special Hope Foundation, we are very proud of our Self-Advocacy Advisory Committee, and for the value its members add to our organization. The committee reviews the proposals that the Foundation receives and provides input on whether or not applicants should receive funding, and whether a proposal is designed well for people with disabilities.
I had a chance to talk to committee member Brent White about his experience as a self-advocate, and about what he hopes to accomplish on the Self-Advocacy Advisory Committee:
How did you learn about the Special Hope Foundation?
Brent: I have a friend who serves on the board of the Special Hope Foundation.
What has been your experience with health care through the years?
Brent: Health care is very vexing to me. I find doctors and hospitals to be frightening and inaccessible. I am autistic and most medical professionals have no idea how to work with me or deliver information to me. I am perpetually lost in the medical environments.
Was there an “aha” moment when you realized that you wanted to advocate not just for yourself, but for others with disabilities too?
Brent: I started working as a paraprofessional in a community based transition program about 15 years. It was my first experience being around neurodivergent adults and when I first realized that I was autistic. I witnessed a lot of pathologizing and infantilization of the ND youth we worked with. Choice making, problem solving, or the right to risk and fail were denied by overbearing staff.
The system did not serve the youth in any meaningful way; it simply perpetuated dependence on the staff and special education as a whole. The dysfunction of the system also felt very personal to me. I had had the chance to start an adult transition program for the Berkeley Unified School District in 2009. As far as we know, this is the only program of its kind which is both designed and managed by autistics. The focus is on self-determination from a uniquely neurodivergent perspective.
What kinds of things would you like to accomplish on the Advisory Committee of the Special Hope Foundation?
Brent: I would like to bring my experience as autistic program designer and focus on self-determination.
Read part one and two of our Self-Advocate series:
The mission of the Special Hope Foundation is to promote the establishment of comprehensive healthcare for adults with developmental disabilities designed to meet their unique and fundamental needs.