Why disability-rights activists are furious about controversial MDA telethon returning after 6-year hiatus

Once upon a time before the internet, telethons — marathon television fundraisers known for their endless lineup of performers and rows and rows of on-camera volunteers answering telephones to accept pledges from callers — were charity event staples. And none ran for longer than that of the Muscular Dystrophy Association (MDA), a 70-year-old nonprofit that aims “to free families from the life-threatening effects of muscular dystrophy and muscle-debilitating diseases.”

From 1966 to 2010, the MDA telethon ran in its original format — showcasing a slew of entertainers and children in wheelchairs and their parents for more than 21 hours each Labor Day weekend and famously hosted by Jerry Lewis, who would end each telethon by dramatically singing “You’ll Never Walk Alone.” But following a split between the host and the nonprofit, the event was shortened each year until, in 2015, it was canceled altogether.

Then came September 2020, when the organization announced a reboot of the event — called The MDA Kevin Hart Kids Telethon, to be hosted by the beleaguered comedian. It promises a slew of celebrity guest stars (including Common, Don Cheadle, Eva Longoria, Jack Black and Cindy Crawford), and will be streamed on YouTube on Oct. 24, falling within National Disability Employment Awareness Month.

And while word of the returning tradition may not have even registered for some, it was a painful trigger for many disability activists, who had long viewed the telethon as a “stigmatizing,” “heartless” “pity party.”

“I call it ‘pimped for profit,’” Dominick Evans, a disability-rights activist and former MDA “poster child,” tells Yahoo Life. “They use your body, your voice, your words to make money. … A lot of us feel it’s a fundraising machine.”

Because of that, many have taken to social media, blogs and other formats to express the anger and mistrust that’s boiling over as this weekend’s event fast approaches.

“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,” wrote Ben Mattlin, a former MDA poster child (the children were known at the time as “Jerry’s Kids”) and author of Miracle Boy Grows Up, in a Washington Post op-ed. “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.”

While Mattlin admits he can’t judge the reboot before it airs, “it’s already clear the charity has learned nothing from its past errors,” he writes, breaking down the main problems as follows: Hart as host (who, though he may make a good ally, has never identified with the disability community, and who, like Lewis, has come under fire for using homophobic slurs); an able-bodied guest list (with the exception of model and actress Jillian Mercado, who tweeted in September that she’d be willing to drop out); the name of the event itself (“blatantly reminiscent of the old ‘Jerry’s Kids’ motto and smacks of the same patronizing connotations”); and, finally, allegedly not helping the community in direct ways with the funds raised.

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

An MDA representative tells Yahoo Life that Mattlin’s piece “does not reflect the current MDA mission. The community is at the center of all we do. We are hosting this event to raise awareness and remove barriers for our community.”

But Mattlin is far from the only one who remains unconvinced.

In an article titled “Dear Kevin Hart, The MDA is Heartless,” Emily Wolinsky, founder and executive director of NMD United and former MDA poster child, writes that “exploitation, whether it takes place in the entertainment industry or for fund-raising purposes, is unacceptable,” before sharing her personal story. She also notes “the MDA largely ignores Black, brown, and poor kids (and adults). … Underrepresentation on many, many fronts plagues disability-driven charities.”

On her blog, Karly Joy: Disability, Lifestyle and Nerdy Thoughts, young activist Joy wrote “Why I Don’t Support the MDA Telethon,” calling it a “huge pity party.” She added, “I was on the telethon when I was a baby, so I don’t remember actually being filmed. … My mom, on the other hand, remembers. Specifically, she remembers the crew making her cry right before turning the cameras on. That’s the goal. ‘Look at these kids, their life sucks. Maybe they’ll even die young, let’s cry while writing a check.’”

On Twitter, meanwhile, a flood of critics — many of them also former MDA poster children — used the hashtag #EndTheTelethon as part of an online protest organized by Evans, who tells Yahoo Life, “The first time I was on the telethon I was 10 or 11 years old and I slept in the greenroom. … I was there all night. When the phones were dead, at 2 or 3 a.m., they would get me up.”

“The MDA telethon has been one of the primary ways that people see disabled people on television,” explains Evans, whose activism specifically focuses on disabled representation in the media. “So, when the only image you’ve ever seen of disabled people is what MDA presents, you get very specific ideas about disability. … It’s a vicious cycle when disabled people are not crafting these stories, and then it’s the nondisabled view of what disabled is: We’re going to die without a cure, we’re going to have miserable existences as ‘half people.’”

Jerry Lewis and other baggage

“Half people” is a reference to the very deep roots of telethon criticism, some of it involving the polarizing Lewis — who ignited a firestorm and inspired a group of activists to call themselves “Jerry’s Orphans” (captured in a short documentary) after he penned a 1990 piece for Parade magazine from the imagined perspective of a person with muscular dystrophy. “I may be a full human being in my heart and soul,” he wrote, “yet I am still half a person.”

Before that — in 1981 — Evan Kemp Jr., a longtime disability-rights activist who died in 1997, wrote an opinion piece criticizing the telethon for the New York Times. “The very human desire for cures for these diseases can never justify a television show that reinforces a stigma against disabled people,” he explained. “These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives and segregate us from the mainstream of society.”

Kemp explained that the telethon stokes prejudices in several ways, including through its use of “poster children,” he wrote. “The innocence of children makes them ideal for use in a pity appeal. But by celebrating disabled children and ignoring disabled adults, it seems to proclaim that the only socially acceptable status for disabled people is their early childhood. The handicapped child is appealing and huggable — the adolescent or mature adult is a cripple to be avoided.”

It’s that sort of viewpoint — perpetuating the “ableist” belief that people with disabilities are less-than — that’s fueled the long-simmering controversy, providing the foundation for today’s protesters, who argue that events like the telethon may raise money, but come with a price of dignity.

Add to all that the criticism directed at Hart as host, and the entire event starts to feel like a powder keg. “How can they hire Kevin Hart and not think about what has been said by him about queer people?” wonders Evans, who identifies as “queer, trans and nonbinary.”

Still, when asked about the outpouring of telethon criticism, the MDA representative says the organization is focused on representation. “Our main goal is to ensure that the neuromuscular disease community is accurately portrayed,” she says. “We have an advisory committee, including people who live with neuromuscular diseases, actively engaged in providing counsel and guidance as we develop the program and we have representation on the event production team and as part of the writing process.”

As for the choice of host, the representative says, “We chose to work with Kevin Hart because we felt that there was a union with the missions meeting in the middle. Kevin’s organization, Help From the Hart, focuses on removing barriers for youth, and we support youth and adults living with disabilities. Together, we are focused on celebrating both of our communities’ accomplishments and helping people understand the need for respect of all people.” (For his part, Hart told the Hollywood Reporter that, as a child, he was in awe of Lewis’s hosting stamina, and also that he plans to play it safe in taking over the role. “We’re in extreme sensitive times,” he said, “and you have to carry yourself accordingly. It’s a must now.”)

So where does the money go?

With the pandemic practically eliminating other funding sources, the MDA rep says the two-hour telethon aims to raise “critical funds needed to deliver research, care, advocacy and resources” for clients.

According to Christopher Rosa, former longtime MDA board member and a person living with neuromuscular disease, “We hope that this show highlights the need for greater investment in the potential of people with neuromuscular disabilities, as well as the need for advocacy on issues critical to our wellness and independent living.” He responds to criticism of able-bodied involvement by telling Yahoo Life, “People with neuromuscular disabilities are richly engaged in MDA’s mission in general, and the telethon in particular. Several key members of MDA’s staff are either individuals with neuromuscular diseases or those whose loved ones are impacted by neuromuscular disease.”

And finally, regarding the stance among critics that the billions raised by MDA do not directly help people — the MDA has low grades from both the Charity Navigator and Charity Watch nonprofits on its allocation of resources — Rosa responds, “MDA leverages funds raised to deliver research, care, advocacy and resources to the 300,000 people across the country living with muscular dystrophy, ALS and related neuromuscular diseases. Funding also supports a network of multidisciplinary medical care teams at over 150 MDA Care Centers at the nation’s top medical institutions, [as well as] summer camp for more than 3,000 children, offered free of charge each summer.”

Anti-telethon advocates talk anecdotally, meanwhile, about a steady decline in services offered to clients by the MDA, including financial assistance for durable medical equipment. Still, there is one point most seem to agree on: that the MDA summer camp was a priceless experience. “I learned so much as a kid from the disabled adults when I went to the camp,” Evans recalls. “They were the only ones who showed me that I could have a future — they had families, they had jobs.”

Wolinsky echoes that, telling Yahoo Life, “The camp was amazing, because it was the one time of year we saw our people — we had boyfriends and girlfriends and … this peer connection, which was the best thing the MDA ever did for us.”

But still, she adds, “it was all under this premise of pity for these sad sacks that are going to die,” and recalls that there was always one day of camp set aside to film kids for the telethon, which was “the most miserable day at camp that you could imagine — camera angles where they’d zoom in on … drool on your face … and they’d use this sad music, like every hug we gave was our last hug. ‘These kids have no friends, they never have any fun, look at what we’re giving them!’ It was like exploitation on a plate.”

This year, as a proactive response to the telethon on the same weekend it’s happening, Wolinsky’s organization — a peer-led nonprofit by and for adults living with neuromuscular disabilities and promoting independence — will host an alternative event: a fundraising game night. And it comes with a message: “We want to make the point,” says Evans, “that you don’t have to denigrate disabled people to raise money for us.”

Read more from Yahoo Life:

• The coronavirus and people with disabilities: WHO highlights this high-risk group

• Disabled activist Alice Wong reflects on the Americans with Disabilities Act: ‘A law does not change the world overnight’

• Disability activist Lizzie Velasquez condemns TikTok trend of parents pranking their kids with fake photos of their new teacher

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