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Opinion Why the return of the Muscular Dystrophy Association telethon is unwelcome news


Ben Mattlin is the author of “Miracle Boy Grows Up” and “In Sickness and in Health.”

The Muscular Dystrophy Association recently announced its celebrity-studded telethon would be returning after a six-year hiatus. To many of us in the disability community, this was not welcome news.

The onetime Labor Day staple was notorious for pity-peddling and inspiration porn. The reboot, with Kevin Hart at the helm in place of the late Jerry Lewis, looks to be no better.

Granted, we can’t judge the broadcast until it airs on Oct. 24. Yet it’s already clear the charity has learned nothing from its past errors. Hart, for starters, is no more appropriate a host than Lewis was. He might make a welcome ally; in fact, a portion of this year’s intake will go to his Help From the Hart Charity for underserved communities. But he has never identified with the disability community, with disability rights or disability justice — other than from the charity model. He may understand disabled people as needy, which many of us are, but he hasn’t established that he respects disabled people or understands that our issues are civil rights issues.

Representation matters: You wouldn’t ask a white person to host a United Negro College Fund or NAACP fundraiser, would you?

Of course, the show needs a big star, and there are none with the neuromuscular qualifications, at least not yet. But even the guest list is distinctly able-bodied (Eva Longoria, Michael B. Jordan, etc.). The sole exception, Jillian Mercado, the groundbreaking model and actor who has a form of muscular dystrophy, announced on Twitter that she has misgivings about participating. She wants to represent her community fairly and said “if they have a problem with this … then [I’ll] remove myself.”

By comparison, the Cerebral Palsy Foundation always uses members of its community in fundraising. For years it held telethons emceed by Tom Ritter (brother of the late TV star John Ritter), who has cerebral palsy, and this year’s virtual event featured actor Micah Fowler, who has cerebral palsy.

Worrisome, too, is the name “MDA Kevin Hart Kids Telethon,” which is blatantly reminiscent of the old “Jerry’s kids” motto and smacks of the same patronizing connotations. (Speaking of offensive connotations, Hart, like Lewis, has come under fire for homophobic slurs.) “Jerry’s kids” might sound cute, but infantilization of disabled people is a serious and widespread problem. It’s not just waiters who ask our dinner companions, “What will he/she be having?” The attitude undercuts efforts to improve our perpetually high jobless rate, which remains at roughly twice that of those who are not disabled.

To be sure, many disabled folks need financial assistance. Living with a disability is expensive. A new motorized wheelchair can cost more than a car. Medicaid and private insurance don’t fully cover personal-care help, breathing machines or necessary medications. (Google “most expensive drug,” and you’ll see it’s a treatment for spinal muscular atrophy, one of the neuromuscular disabilities the MDA purports to address and the one I was born with.)

But does the MDA supply any of those things? According to its website, if you need a wheelchair it will provide “referrals to community resources.” True, it subsidizes lab research and, as a possible result, people with muscular dystrophy are living longer. I myself might be an example. But maybe those scientific developments would have occurred anyway. In any case, I can’t help feeling there is a better, more appropriate way to raise funds, a way without the stigmatizing humiliation.

I concede the MDA could still surprise us. It has, in recent years, largely stopped calling us “patients,” instead using “clients” or “consumers,” which sounds more empowering.

Nevertheless, its current ads — one says, “Kids with neuromuscular disease need your support more than ever” — are astonishingly similar to the smarmy hokum of the 1970s. That’s when I quit being a poster child. I was tired of the lies; I didn’t hate my disability and I wasn’t pining away for a cure. Later, I joined demonstrations against the “pity parade.” The MDA’s response was to criticize our efforts and try to demoralize us.

When the telethon was canceled in 2015, we thought we’d won. Evidently, we were wrong.

All we want the MDA to do is stop the condescension; stop portraying us as needy, sickly children. Stop undermining what we hope to achieve. If the MDA truly wants to help improve our lives, it must listen to us and respect our views. Let members of our community guide its priorities and fundraising efforts. Answer fundamental questions such as how many disabled people are on its payroll, and whether it holds corporate sponsors to any standard of accessibility.

In other words, it should put its money where its mouth is. And until that happens, until it welcomes our input and addresses our issues, we will continue protesting.

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