Spinal Muscular Atrophy 'Doesn't Define Me'

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SMA, which stands for Spinal Muscular Atrophy, occurs in one of every 6,000 births. Commentator Ben Mattlin has a SMA and is paraplegic. He is often asked what he would do if a cure became available. His answer: He wouldn't choose to be cured.

RENEE MONTAGNE, host:

Commentator Ben Mattlin depends on his health insurance. He's paraplegic. Many people with disabilities dream of the day a cure becomes available. Ben is not one of them.

Mr. BEN MATTLIN (Commentator): I get a lot of recommendations to join Facebook groups with names like Fight SMA. I never respond.

SMA stands for spinal muscular atrophy, and I was born with it. I've never walked or stood, and over time have lost the use of my hands. It's a progressive neuromuscular weakness. It occurs in one of every 6,000 births, and is the most common cause of genetically based neonatal death. So fighting it is a noble cause, and I feel for parents who've lost their babies, but it's not my cause. I can never support a group that aims to cure me.

My disability is part of who I am. It's all I've ever known. Who would I be without it? It doesn't define me, but it has informed every aspect of my life. Even as a child, I never dreamed of walking. Flying, yes. I wanted to be a superhero, but I never wanted to be just like everyone else.

My big brother, who doesn't have SMA, once asked me what I'd do if there were an operation that could fix my muscles but risked leaving me worse off or dead. No thanks, I said. Even then, it was the thought of losing my trademark wheels that terrified me, not death.

I can see that being able to do more physically would be helpful. I'd like to be a little less dependent on other people and machinery. But when I try to picture myself stripped of my disability, it leaves me feeling cold and lost. My Facebook friends might not agree. Many people with SMA do feel more physically vulnerable than I do. Yes, I know I wouldn't be here without scientific progress.

Yet I can't help having a mental block against medicalizing disability. It just doesn't square with my particular form of disability pride. After all, if you dream of a cure, aren't you saying we're not okay as we are? And if we focus on medical fixes, don't we risk misdirecting our energies away from the external inequities that we can and must end: the barriers of architecture, attitudes and economics that truly handicap us.

Disability is a fact of life. It's here to stay, so why not celebrate it as another part of human diversity? Call me crazy, but I sort of like myself just the way I am.

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MONTAGNE: Commentator Ben Mattlin lives in Los Angeles, where he's working on a memoir.

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MONTAGNE: It's MORNING EDITION, from NPR News.

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