Confession time: I’ve been unable to write for the last two months. It’s been a time of side projects and talks, plus lots on the personal end, but in terms of disability writing I’ve done virtually nothing. What I did complete was somehow deleted by Scrivener, which, in my writer’s block haze, I took as an obvious sign that I shouldn’t be writing. So I took a break.
After spending over a year doing continuous research, I found myself frozen in a state of paranoid introspection. Why was I doing this at all? Why dredge up my own memories of rare and undiagnosed disability in the family? What if people found out that my sister and I have grown sadly distant – that I live hundreds of miles away and, within the parameters of her abilities, I do the best that I can but have a nagging awareness that our modern relationship fails her? Would I have to face my own terror about what will happen in the future, when my parents can no longer help with my sister, when she finds herself in a city with no kin and few personal connections (somehow, after 30 years), and here I am in one of the absolute worst states in the nation for adults with disabilities? Continue reading
Like many people in the disability community, I have been shocked by the recent one-sided media coverage of the upcoming closure of the State Supported Living Center (SSLC) here in Austin (including this, this, and this). I will have much more to say on this, but I wanted to address some key points first.
1) Make no mistake about it: the SSLC is an institution and institutions segregate people with disabilities by design. They are also part of a tangled history of marginalization, sterilization, eugenics, and what I would call a systematic erasure of a significant portion of the population and a denial of this kinship world.
2) Institutions are not an inevitable aspect of disability services. Indeed, as of 2011 there are 14 states that have no institutions for people with disabilities. This is not because these states have chosen to throw these individuals to the wolves; rather, they provide services to individuals in their communities.
3) In the landmark Olmstead v. L.C. ruling of 1999, the Supreme Court of the United States ruled in favor of community living. This decision asserted that Individuals with disabilities have the right to live in the least restrictive environment, dealing a decisive blow to the “unjustified isolation” of this population. Note that this happened 15 years ago. 15.
I will begin this with a disclaimer: my research does not focus on sex. It’s simply not my area and, for whatever reason, the subject hasn’t pulled me in as a scholar. That said, sex and sexuality have been recurring themes in my dissertation fieldwork. People want to discuss them. Parents, families, educators, psychologists, physicians, policy folks. As with any population, sex talk in the context of disability brings up anxieties, curiosities, and questions; it sparks discussion of risk (real or imagined), agency (ditto), gender, health, and the unknown. While none of this is unique to a particular group, the lack of space for conversations surrounding sex and disability as a whole gives pause. Continue reading
“But I’m a family member.” He gives me a blank look. “A sibling,” I clarify. “Really?” his eyes widen, surprised either at my statement or at his failure to recall. I nod and smile, assuming the situation is settled. I’m mistaken.
I cannot believe that I got bounced from the family mixer. I don’t even know what to think about it.
I find the words waiting, fieldnotes that I forgot I dictated after attending a disability conference for families and professionals. I recall feeling so energized after attending a session on family, rights, and community inclusion, presented by a father from Spain. I approached him afterward and introduced myself. I explained about my research and touched on my family background as I always do – just enough to assure parents that I, too, am coming at this from the inside. A few minutes in, we realized we had some friends in common in Guatemala, Argentina, and Boston. “Of course we know each other,” he said, once we discovered the mutual connections. “We are all family members.”