June 27th, 2016

Disability Present and Future

A couple of weeks ago, I unexpectedly had time to pick up groceries here in Capitol Hill. The only problem was that I had to briefly turn my back on my unlocked bike to do it.

My bike, a vintage deathtrap with lots of chrome

Though I hadn’t asked for help, a mother wrangling several children pressed her oldest into service guarding the bike. He was talkative and polite, probably about eleven, and definitely a little unusual. As he struck up a conversation with me about how I looked like a character from an obscure show, I became increasingly sure I had met an autistic child. I checked out, thanked him, and got my bike back. Before I could say anything to his mother, the family was gone. I rode away grinning.

The boy seemed alright. He was engaged with the world around him, looked reasonably happy, and was clearly confident enough to share his interests with other people, even strangers. The reason I smile whenever I see an autistic child, really any child with a disability, doing well is that I am Autistic, myself. I was born just after the passage of the ADA, and I represent one possible future for kids like the bike guard.

Some children like him will grow up to need a lot of help. Some will need very little. All of them can have rich, worthwhile adult lives under the right conditions. At almost 24, some may go up to Washington for quintessentially ambitious-twenty-something internships like I have this summer. By the time they do, I hope that is so normal and visible that it stops being an interesting story even outside of disability circles.

I also want him to have livable options if he grows up to need more help than I do. I don’t take the privilege of being able to take this internship, something I wanted to do that happens to be a few hundred miles from my family of origin, for granted. That option is not available to most of the disability community, either because supports are inadequate to meet the individual’s needs or because there are perfectly adequate supports but other people refuse to let the individual try, take risks, and maybe fail.

That said, there are people who need more assistance than I do with daily living who are accommodated and free to go about their lives: non-disabled people, people who have no disability label. For instance, hardly any non-disabled people these days would feel as comfortable as I do changing a set of spark plugs, but most non-disabled, American adults drive cars. How does it work? Services exist. Mechanisms for funding the services exist. These people get by. Their need for help and the help they receive are not stigmatized. Why should things be any different for people with labels? It doesn’t have to be, and this blog is about how we build something better.

I hate talking about, and could never speak for, any overarching disability community. The truth is that there are a lot of disability communities with different needs and concerns. Sometimes priorities and organizing overlap, align, and unify, sometimes not. The one thing I feel fairly comfortable saying almost all of us want is ownership of our own lives, futures of our own, the kind of self-determination I have where no one stops me from pursuing a tough course of study like law or spending a weekend with a friend in New York City. This blog is going to be about spreading self-determination so that disabled adults have dignity and children with disabilities can look forward to the kinds of long, rich, interesting lives that people without disabilities wouldn’t be opposed to having. If we have these conversations and intentionally support self-determination, the boy who guarded my bike will keep doing fine. By the time he is my age, an ambitious, disabled adult traveling alone in a strange city may be a story that feels less surprising to hear, and he will be able to do whatever his talents and work ethic allow, disability and all.

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