'Cure' Me? No, Thanks

Near the end of last year, the Food and Drug Administration approved the first drug for the treatment of spinal muscular atrophy. A number of my Facebook friends rejoiced. “A Christmas miracle!” one of them declared. But I am not so sure.

Yes, S.M.A. is the No. 1 genetic cause of infant death. And the new drug, Spinraza, sold by Biogen and developed with Ionis Pharmaceuticals, will be a godsend for many. Without it, babies born with this condition, which causes debilitating muscle weakness, have only slightly better than a 50-50 chance of surviving past age 2.

According to clinical studies of more than 170 patients who took the drug, 23 percent of infants died and 40 percent achieved an otherwise unlikely or impossible degree of motor function, such as the ability to sit up unassisted and even, in some cases, to stand and walk.

Spinraza is supposed to be beneficial for those with a later onset, too, because it works by increasing the body’s production of the SMN protein, which is what’s lacking in those of us with S.M.A. But the long-term effects are unclear. The F.D.A. approved the drug in less than three months under “priority review.”

As someone born with S.M.A. 54 years ago — a wheelchair user since the age of 3 who has never walked or stood — I fear for those like me who may never look at their lives the same way again. I fear that Spinraza, while giving hope, and perhaps a stronger and longer life, to some, may also release a torrent of self-doubt, of pent-up insecurity about our inexorable dependence and emaciated bodies. In some ways, it could make it harder for many of us to live with this type of disability.

Like many disabled adults, I’ve long since become accustomed to my physical limitations and all they entail. Call me set in my ways, but I can’t fathom not tooling around on wheels or no longer needing assistance with all manner of physical tasks, such as brushing my teeth and driving my lift-equipped minivan. I’m comforted to be always in the company of helpful people and devices, to truly understand the notion that no man is an island. This is the only way I’ve ever known.

Even as a child I felt this way. My mother, a firm believer in the power of modern medicine, would tell me about Jonas Salk and his polio vaccine, to shore up her hope of an S.M.A. cure. I recall responding that I didn’t want to give up everything I’d grown used to, everything that made me me. My disability experience had already informed my perspective on the world, and I had no interest in risking any alteration.

I know now that it’s not all about me. My disability takes a toll on my family. It’s a drain on my wife’s energy and time, not to mention the wherewithal of our children. It’s a financial burden on my father and stepmother, who help with the bills (my personal-care attendants alone cost $40,000 a year).

Yet none of them are urging me to take the leap. It’s not as if Spinraza is truly a cure anyway. It may slow or stop the progression of weakness in some users, but the underlying condition remains. While approved for every age and for every stage of S.M.A., it’s apparently most effective with kids (and adults with a recent onset of symptoms). So although it might restore a modicum of muscle tone, I may already be too far gone.

I concede that less deterioration sounds desirable. But what of the risks? Listed side effects include possible respiratory infections, kidney toxicity and blood clots. None of which would faze me if I had nothing to lose, but I do.

Equally daunting, the drug has to be injected directly into the spinal column several times a year. So it’s a commitment. It’s also an enormous investment, costing as much as $750,000 the first year and $375,000 annually forever after.

To be sure, surmounting fears and obstacles like these is how I’ve lived much of my life. Even Spinraza’s newness — the sense that those who sign on are being guinea pigs — wouldn’t stop me if I were hankering for a medical solution to my life’s complications. Furthermore, I recognize that I wouldn’t have survived as long as I have without medical interventions. So it’s not passivity or some kind of technophobia that gives me pause here.

My primary objection comes from my hard-won sense of self-esteem. Long ago I decided that if I was going to like myself, I had to make friends with the disability that was inherently part of me. Living with a disability is not easy. That’s why I became an advocate of fair treatment and equal access: I knew deep in my bones that things could be better. It wasn’t that I had to pull myself up by my bootstraps. Rather, society had to change, become more inclusive, more open to and validating of people with disabilities.

If instead I’d put my energies into fund-raising for medical development, that would’ve been a betrayal of my core belief — namely, that I and all my brothers and sisters in disability are O.K. as we are.

This resistance to the cure mentality is shared by others and surfaced this month at the South by Southwest festival in Austin, Tex., where the title of a panel on neurotechnology — “The End of Disability?” — angered so many participants that it became a heated topic and hashtag on social media. Some thought it evoked eugenics. “Do they have an #EndOfAbleism session?” someone wrote on Twitter.

The organizers of the panel later apologized, but did they truly understand that this is akin to the difference between saying “the end of racism” and “the end of race”? One takes aim at the problem; the other, at the victims of the problem.

To be clear, I have nothing against any advancement that will help others. Not everyone with S.M.A. (or any other disabling condition, for that matter) has the support I’ve benefited from. But not all of us in the target market are actually seeking this solution. I can’t help feeling there’s a contradiction between taking pride in one’s disability and hankering for a cure. You don’t try to cure something you like about yourself.

I acknowledge that as I age with S.M.A., I am troubled by my increasing difficulties with swallowing and breathing and the now complete loss of use of my hands. Yet even if the drug did help head off further debility, I’d have to face feeling like a traitor to the movement, a turncoat to the cause of disability pride.

None of this is to say that medical science shouldn’t be pursued or that those who are drawn to this drug and its potential benefits should not take it. It’s just that it will never be the beacon of hope for me that it already is for others. Because I know that even if it did eradicate S.M.A., the disability community will still be plagued by unnecessary and unfair impediments to equality and justice. Those are ailments that medicine can’t do anything about

^{Ben Mattlin is the author of the memoir “Miracle Boy Grows Up.”}

^{Disability is a weekly series of essays, art and opinion by and about people living with disabilities. The entire series can be found here. To reach the editors or submit an essay for consideration, write opinionator@nytimes.com and include “Disability” in the subject field.}

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