In May, 2012, The Special Hope Foundation provided a grant to the Autistic Self Advocacy Network (ASAN) to develop a policy brief series educating the disability professional community and the public about healthcare barriers, challenges, and needs of adults and youth with intellectual and developmental disabilities.
The project, Pacific Alliance on Disability Self-Advocacy (PADSA), was launched in February, making it possible forself-advocacy groups in California, Oregon, Washington, and Montana to receive help in developing additional skills to lead their groups more effectively.
We recently talked to the project’s coordinator, Stacey Milbern:
How long have you been involved in the self-advocacy movement?
I’ve been involved in the Disability Rights Movement since I was about 17 years old. I spent my whole childhood trying to run away from disability — doing whatever I could to hide my difference and compensate for the fact that I used a wheelchair. It’s something that is a relatively new thing in society — youth with disabilities are growing up more mainstream (a result of the Americans with Disabilities Act) and although that is an absolutely fantastic, needed thing, it also means that more youth with disabilities are growing up without seeing people like them (in the past, more of us would have been forced into segregated schools). I avoided anything associated with disability because I thought it would make my peers notice that I was not “normal”.
When I was a high school junior, I signed up to go to a leadership conference in Washington D.C. I didn’t really know what it was about, except that if you were a student with a disability you got to go on a free trip to DC. I was shocked to arrive and find out that it was a conference for people with disabilities to learn about disability rights. The thing I avoided so long was in my face.
Surprisingly, it was refreshing. It was the first time I felt like I didn’t have to work hard to hide my difference. Like I could just breathe deeper, a full exhale inhale breath. I felt like I wasn’t a freak. I learned the history of disabled people advocating for rights, and I felt like I could be a part of a movement, that by having a disability, I inherited a legacy of struggle, passion, and advocacy. I committed my life to disability rights at that point, and have worked in the movement since
Who were your earliest mentors/inspirations?
I’ve had so many inspirations and mentors since joining the movement. I’m really thankful for that. The biggest one is my friend Patty Berne. She runs an arts organization that focuses on disability and sexuality called Sins Invalid: An Unashamed Claim to Beauty in the Face of Disability. She has a body/disability and access needs that are very similar to mine.
When I was about 23 years old, I was still living with my parents in NC and was getting to a point where I stopped imagining that my life could be different. I couldn’t imagine a situation where my family wasn’t providing all of my care and making my decisions, or one where I’d get to live a life that I wanted to (being out as gay, for example, or living in a city with public transportation so I can get around when I want).
Patty and I started talking on video chat, and she invited me to visit her in the Bay Area. I stayed with her, and it blew my mind to see a woman who needs as much support as I do managing her life in the way she wants to.
When I moved to the Bay Area about a year later, she taught me so much about how to be an adult with a disability and all the responsibilities that are required when you have complicated support needs like ours.
What, in your opinion, is the greatest challenge for self-advocates with disabilities?
I think the biggest barrier is the fact that the system/society is not designed for us.
We are living in a world not constructed to house us. Regardless of whether it’s an intellectual, behavioral, physical, sensory or chronic health disability, almost everything we touch was not meant for us, and we have to — on our own or if you’re lucky, with other people — figure out how to make it work.
For example, in the healthcare field, doctors are not paid for the extra time it may take to fully serve someone with a disability, so they are often less interested in providing care to us. It’s the same thing with transportation – taxi drivers, bus drivers, etc. don’t get paid more for the extra labor it may take to serve us so there is a disincentive to provide service to us.
A school might not accommodate a certain learning style and in fact, rather than trying to accommodate to various learning needs, often uses a one-size-fits-all-model. And it it’s not the individual teacher – it’s the whole educational system set up that way. For those on public benefits, the government does not allow us to get married — if two people get married, their asset limit is counted together, making it impossible to live on. If we look for housing, it’s impossible to find one that meets are needs and if we do find one, we often have to modify it to work for us. The biggest barrier is an inaccessible environment that often refuses to accept us.
A success story from your work that you would like to share?
I work at the Center for Independent Living as a Program Manager. I manage our Independent Living Skills program (one on one instruction manage our training program (teaching people with disabilities how to use public transit), and our youth program (supporting youth in preparing to transition to adulthood). We believe that people with disabilities are the experts of our own lives, and most of our staff are professionals with disabilities themselves. We are cross-disability, meaning that our clients have all kinds of disabilities and support needs. Independence does not mean doing everything yourself, but taking more control and direction over your life.
Regardless of the situation, one of the coolest feelings in the world is seeing someone break through fear and take a step towards independence that they didn’t think was possible. We have the right and ability to chase after the dreams and lives we want – just like everyone else.
Stacey Milbern, in addition to her work with ASAN, is a Program Manager with the Center Of Independent Living. Stacey has been working in the disability community since she was 18 years old. She delivered the Annual Shriver Lecture at UCSF’s 13th Annual Developmental Disabilities: An Update for Health Professionals Conference.