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A Disabled Life Is a Life Worth Living

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October 06, 2016

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A Disabled Life Is a Life Worth Living

In midsummer, I learned of the death of Laurie Hoirup, a prominent 60-year-old disability rights advocate in California. Laurie drowned in the Sacramento River after a July 4 celebration. She was well-loved and accomplished. She’d served as a chief deputy director of the State Council on Developmental Disabilities for five years and wrote books about living with a disability.

Laurie’s sudden and tragic death was not directly caused by her S.M.A., but it is a stark reminder of the vulnerability of disabled lives. She was deboarding a pleasure boat when the ramp to the dock shifted. The weight of her motorized wheelchair — and the fact that she was strapped into it — pulled her down into the water too rapidly for rescue.

Laurie’s death had extra significance for me, a 53-year-old husband and father of two, in part because we shared a diagnosis: spinal muscular atrophy.

S.M.A. is a congenital and progressive neuromuscular weakness akin to muscular dystrophy. Until recently, half the babies born with it would die before their second birthdays. Their hearts and lungs became too weak to continue. Medical care and understanding have improved the odds somewhat.

I initially manifested symptoms at about 6 months. I was unable to sit up, and doctors promptly called me a “floppy baby.” I never walked or stood on my own. At the time, S.M.A. was all but unheard of and nearly impossible to diagnose. Now it’s estimated to occur in one of every 6,000 to 10,000 births worldwide.

For people like us, simply enduring can feel like a tremendous victory. One bad cold, though, could spell our end. If our lungs fill with phlegm, we lack the muscle strength to cough them clear. Pneumonia is common. Some treatments help, but respiratory complications — and their impact on the heart — remain a constant threat.

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.

True, it is a hassle having to devise alternative methods for living a normal life. But when it works, Oh, how good it feels! How triumphant and liberating! I’m proud of my persistence and creative coping skills.

Of course at times I grow despondent. I fall into what I call “useless cripple syndrome.” Most of my able-bodied contemporaries are at the pinnacle of their careers, and I’m just getting by. I shouldn’t complain, I tell myself. Unemployment among disabled people is crushingly high.

Because of this, I feel positively driven to make good use of every day that I’m not stuck in bed with a respiratory infection or other ailment. Yes, that may make me an overachiever. I graduated cum laude from Harvard at 21. I became a financial journalist, and my essays have been featured in major publications, including this one. My second book will be published next year. I don’t say all this to boast. The point is, I want to accomplish everything I can while I still have the ability. I may feel fine today, but I can’t count on tomorrow — or even an hour from now. I’ve seen too many friends in the disability community perish too young.

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.

The perseverance to live fully with a profound disability comes, I think, in part from honestly facing your own powerlessness and frailty, and recognizing how much worse things have been and could still be. This can instill a delight in the now. In living with a disability, you’ve already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can’t change, may bring a kind of wisdom.

I realize that external conditions can make all the difference. My family has given me unflagging support. My parents fought to get me integrated into regular schools, long before it was mandated, and insisted I could become anything I wanted when I grew up. Today, my family’s financial backing allows me to hire the full-time aides I need to live a productive life. My wife provides for my personal maintenance whenever paid staff isn’t available. Without all this, I would not be where I am today, but I’d like to think I’d find a way to survive.

Laurie Hoirup lived a full, active life. I wish I could have persuaded Jerika Bolen and others like her to keep striving to do the same, not to put her hopes and dreams into the idea of a heaven of unfettered athleticism. I wish I could have convinced her that she wasn’t better off dead than disabled.

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