Disability Futures

It’s not generally acceptable in my segment of the disability community to harp on our defenselessness. Rather, the idea is to assert core competencies, to distance ourselves from the Jerry’s Kids’ model and anything else remotely pitiful. We seek fair treatment, rightful access to everything in society — jobs, romantic prospects, and so on. Highlighting the downside of disabilities seems counterproductive and self-pitying.

But the truth is, to live with a disability is to know an abiding sense of fragility. That isn’t always easy, but it’s not necessarily all bad either.

I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting, to exercise my full abilities in whatever way possible. Let’s face it, people with disabilities are nothing if not first-class problem-solvers. We find all manner of devices to enable us to raise a fork, drive a car or van, go to the beach. I now control my electric wheelchair with my lips, because my hands no longer function. These very words are being written with a voice-recognition computer.

Not long after the shock of Laurie’s fatal accident, the news came of a 14-year-old Wisconsin girl with S.M.A., Jerika Bolen, who was planning to end her own life by refusing life-sustaining treatment. Just a few weeks ago, she did, and died. News reports said that Jerika was comforted by the promise of an afterlife in which she would be able to move freely and escape her persistent physical pain.

My reaction to this is strong and difficult to express. Growing up with a disability, I often became isolated. Feeling devalued by my peers, with no confidence in my future, I experienced intermittent but profound depression. One can take only so many surgeries, so many bodily betrayals, so much rejection, before wanting to give up. Even today, I can pivot from utter terror over an itch I can’t scratch or a bite of food I can’t quite swallow, to almost unbelievable joy if I manage to clear my throat unassisted or zoom my motorized wheelchair through a crowded street. As disabled people, we are endlessly buffeted by circumstances beyond our control.

I dare not judge Jerika Bolen. I don’t know the entirety of her situation. But I do wish she had found the will to live. I’m saddened — as were many others with S.M.A, and some disability rights groups — to think others might grow so weary or apprehensive that they follow her example. I hope she received the same level of intervention any other suicidal 14-year-old would. I wish I could have told her about the psychological alchemy that can turn frustration into an internal fuel. If I’d had the chance I would have told her that society needs its disabled people, too.