Interview with IACC Member Samantha Crane
Hi, I'm Sam Crane. I'm a member of the Interagency Autism Coordinating Committee. I'm also an autistic person and the Director of Public Policy and Legal Director at the Autistic Self Advocacy Network.
Choosing a Career
When I was in college as someone with multiple disabilities, I was really fascinated by how the brain works. And I thought I was going to become a researcher in psychology. So I majored in psychology and I did a year as a lab assistant at a language development lab at the University of Pennsylvania. But at the same time, while I was working as a lab assistant, I took a UPenn law school class on mental health, and I was really hooked by legal advocacy and thinking about things from an advocacy standpoint, and a legal standpoint. So at that point, I changed courses, went to law school, and have since then been really focusing on both legal and policy advocacy for people with disabilities.
Before I was at the Autistic Self Advocacy Network. I worked at the Judge Bazelon Center for Mental Health, which is a really great advocacy organization, focusing on advocacy for people with psychosocial disabilities. But I really wanted to go somewhere that was really self advocacy focused. I really liked the idea of working someplace that was both run by and accountable to people with disabilities themselves. So about five years ago, I came and joined the artistic Self Advocacy Network, which has really been a great place for me.
The Autistic Self Advocacy Network's mission is to build a world where autistic people are accepted, respected, supported, and entitled to self determination. Because we're a self advocacy organization, we really try to follow the priorities of our community and make sure that we're advocating for supports that really enhance our quality of life.
The Self-Advocacy Community
We're a community that wants hope, and want support. So our first advocacy campaign back when we were entirely volunteer led tiny oganization in 2006, was against an awareness campaign that portrayed autism as the sort of dark force that was holding children for ransom. And that was sending messages like, you know, we have your child and your child will never have friends and is doomed to a life of social isolation and will never live independently. Those are messages that autistic people often do hear about their future, and we found that it really negatively affects us. We are people like everyone else. We want to believe that we have hope in our lives.
What We're Advocating For
What we really want to advocate for is supports that help us meet those challenges. And we know that we have challenges better than anyone else. We know that we can face isolation, we can have difficulty living independently. But ASAN really wants to advocate for a world in which we have the supports to meet these goals like independent living, you know, good social life and access to meaningful work and meaningful other life activities.
The Autistic Self Advocacy Network is still a really small organization, we have about 10 staff members, and not all of us are even full time. But for such a small organization, we have a really broad range of initiatives. And the consistent theme is to make sure that everyone of course, has the supports that we need in order to live in the community. And that includes Independent Living supports, safety supports, communication supports, support with decision making, employment supports, and, you know, the full range of things that people might need.
The Role of the IACC
And the IACC can help in really two important ways. One, the IACC helps inform the community of new research developments so that people can know what is out there and what's known. It also helps give the community a voice in the direction of new research initiatives. This is still I think, very much, a work in progress. But I think that progress is definitely being made. During the time I've been on the Interagency Autism Coordinating Committee, we've had really important conversations about the issues that matter most to the community. And those include things like mental health, access to community based services, access to health care, and research on co-occurring health conditions that have a huge impact on the quality of our lives.
Issues the IACC Should Address
So our community really needs more research on services and interventions that improve our life course outcomes, and that includes participation in the community employment, long term mental and physical health and so forth. I think what the community often doesn't realize is that for the most part, there's a lot of agreement among members of the Interagency Autism Coordinating Committee that these are really important issues to research.
How can we cultivate new researchers and new areas of research, and translate those goals into real results for the community? I think that's an important direction for us to go in.