Silence and Noise

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?

The feelings began in January, all set for the New Year. Perpetual overthinking, not to be confused with depression. I wasn’t depressed, not at all. Not even anxious, really. Just stuck in a state of continuously overanalyzing everything in terms of disability, health, and personhood. I could not get out of it, could not turn it into something productive, could not really move forward.

Why was I suddenly convinced that everyone I knew and loved was undiagnosed or dying? Where had this fear come from? I’d never operated this way, yet I suddenly felt frozen. An itchy scalp triggered bizarre fears of meningitis; I almost convinced myself I was having a heart attack one night, or perhaps a pulmonary embolism. Everywhere, everyone began to be coded as somewhere on the autism spectrum.

I watched disability horror stories unfold in the news. A young, Black man with autism in the city where I live was shot and killed by a neighbor after knocking on his door early one morning, presumably confused and scared because he had run away from his group home. He literally lived across the street from his killer. The media and police cast it in terms of a disability inevitability. I was stunned by the explicitness of the denial of personhood, of the lack of value of a life. Months later, my eyes fill with tears as I think about it. I shouldn’t be so naïve. Here, disability, race, and gender were a deadly combination – because of what the public made them out to be. Because they were cast as a reasonable cause of death, complete with a requisite “Our thoughts go out to the family.”

I saw the growing opposition in Texas to closing institutions for adults with disabilities. This, despite ample national examples of viable alternatives. Despite a 15-year-old Olmstead ruling and the state’s agreement with the federal government to phase out institutions. People argued that institutions were the only safe option. Indeed, when the young man I mentioned above was shot, several news outlets used it as an example of why adults with disabilities were “better off” in institutions. It’s for their own good. And it’s for the convenience of society to not care for or acknowledge those who are different in particular ways.

I felt sickened, constantly, by the public displays of acute discrimination. Sickened by my own sister’s setup – living in a house “in the community,” but without anything but her most basic needs. No community, no interaction, no social network of support. Just bare life, albeit fully staffed and with a roommate.

I’m not sure what changed. We moved to a new house with better light and a beautiful yard. I began to write daily while watching the birds outside. That helped. A relative who suffered a tragic accident during surgery and was quite precarious for most of February began to show signs of recovery. That helped. I gave my first big-girl, paid, invited talk on sibling experiences with disability. That helped. I read some critically acclaimed books on disability issues and thought to myself: “Those folks didn’t say anything I haven’t already thought to myself.” That was certainly a wake-up call.

I’ve had two months to ruminate, but it’s time to get some stuff out there. The clock is ticking. We need new conversations, new contributors, new voices. We need more voices from more fields. We – somebody, whoever we are – need to push disability into popular consciousness in new ways. Because when I stop to think about what I see, hear, and read on the subject, I’m horrified. And it’s 2015.

It’s time to get back to work.

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