Emily Wolinsky was around 14 years old when she organized her first protest. Wolinsky, now 43, has spinal muscular atrophy, and was attending Rotary Sunshine Camp in Rush, New York, a free summer camp for kids with neuromuscular disabilities sponsored by the Muscular Dystrophy Association. The 70-year-old organization is the nation’s most prominent nonprofit for people with neuromuscular disabilities.
Wolinsky went to MDA camp for most of her childhood and loved it. But there was one aspect about camp she felt “icky” about.
Every year, her MDA summer camp set up a “media day” in which a camera crew would film disabled campers and later use some of the footage in its famed telethon, “The Jerry Lewis MDA Labor Day Telethon” — the MDA’s annual fundraising extravaganza.
“They never filmed us looking like happy kids,” Wolinsky told HuffPost via Zoom. “They always zeroed in on us getting carried out of the pool with our asses hanging out or with drool.”
By the time she was a teenager, she had had enough of it.
“I was furious. And I was like, ‘I don’t want to participate,’” Wolinsky recalled.
“The Jerry Lewis MDA Labor Day Telethon” was a pop culture phenomenon hosted by Lewis until he made his final appearance in 2010. It aired every Labor Day weekend from 1966 to 2014 and raised nearly $2 billion during its run to fund research, clinics and summer camps for people with neuromuscular disabilities across the country. The star-studded event would feature a flurry of celebrities like Jennifer Aniston, Dolly Parton, Ray Charles, Betty White and Jerry Seinfeld. It also showcased kids with neuromuscular disabilities.
Some of these children would appear live on the telethon, and a select group of these kids would earn the special title of “MDA Poster Child,” more commonly known as a “Jerry’s Kid” by 1976. Other children with neuromuscular disabilities were also featured in filmed footage that would air on the telethon, which Wolinsky said was sourced from MDA camps.
But regardless of whether a child appeared live or was filmed, they were always portrayed the same way, according to Wolinsky — “sick or weak.”
Wolinsky certainly didn’t see herself that way, and neither did her fellow campers. So, one day, they organized a boycott.
“We all put up our middle fingers every time the cameras came around,” she said. “We wore ‘Protest’ buttons. We ran away from the cameras. They couldn’t get any footage. The cameramen were really upset and were trying to guilt us into doing stuff. But we were openly shutting them down left and right.”
She remembers, however, there was at least one camper who was willing to talk on camera.
“I had a friend who put blood makeup on his face. He was really into [the band] Kiss, and he dressed up all Kiss-like and told the cameramen, ‘I’ll do an interview,’” Wolinsky, who is now the president of NMD United — a nonprofit organization composed of adults living with neuromuscular disabilities that offers aid and support to their disabled adult peers — recounted her friend using a spooky voice.
Wolinsky noted that at the time — in the early 1990s before Google and social media were easy ways to gauge information — she was completely unaware that her instinct to protest the telethon wasn’t exactly a unique response.
“We didn’t realize there were all these adults that were actually organizing protests [against the MDA telethon],” she said. “Like, going to MDA’s headquarters and protesting, and putting out articles and stories.”
Last weekend, the MDA brought the telethon back for the first time in six years. The organization partnered with comedian Kevin Hart’s Help From the Hart Charity to create a “reimagined” version of its famed fundraiser, called “The MDA Kevin Hart Kids Telethon.” It was Hart’s first major hosting turn since he resigned as emcee of the 2018 Oscars amid controversy over past homophobic tweets. Despite its efforts to depict disabled people in a more positive light, many disabled people HuffPost spoke to said the telethon still fell short and can’t be separated from its demoralizing and exploitative past.
The MDA Telethon’s Painful Legacy
The news last September that the MDA would be bringing its telethon back incited major backlash in the disability community. Many disabled people had long criticized the Lewis-era telethon for its demeaning and pitying portrayals of kids with neuromuscular disabilities. They said the telethon and its host contributed to damaging stereotypes that have helped shape society’s unfair attitudes toward people with disabilities.
And despite assurances from the MDA that the new telethon would be “updated” and crafted with the input of people with neuromuscular disabilities, many disabled people felt that the telethon could never be fully removed from its painful legacy.
In 1973, Lewis held up a child with MD during the telethon and announced, “God goofed, and it’s up to us to correct His mistakes,” according to the Baltimore Sun.
Lewis also wrote a notorious essay for Parade Magazine in 1990, in which he imagined himself as one of his “Jerry’s Kids.”
“I realize my life is half, so I must learn to do things halfway,” he wrote. “I just have to learn to try to be good at being a half a person … and get on with my life.”
The essay provoked protests, and a group of self-described “Jerry’s Orphans” picketed the event in more than a dozen cities in the early 1990s, per The Hollywood Reporter.
Two weeks ago, Dominick Evans, a filmmaker, movie and TV consultant, disabled activist and former MDA poster child, organized a protest on Twitter against the upcoming revamped fundraiser with the hashtag #EndTheTelethon. Disabled people used the hashtag to express their distrust of the MDA and share stories about how the old telethon negatively affected their lives.
Andraéa LaVant, who has spinal muscular atrophy type two and is the founder of a disability-focused strategy and communications firm, told HuffPost via Zoom that she was involved with the MDA from about age 6 to middle school.
Though she and her family weren’t “deeply involved” in the telethon, she did appear on the show via her local news station in Louisville, Kentucky. LaVant, who serves on the board of NMD United and was the impact producer for Netflix’s documentary “Crip Camp,” told HuffPost that she absorbed the message that she was “less than.”
“[The telethon was] essentially saying, that we came into this world, or somewhere along the way, you’ve become broken,” LaVant said. “You are less than and you are not valuable the same way that an ‘able-bodied’ or ‘non-disabled’ person is.”
The telethon also portrayed many of its young participants as being at imminent risk of dying ― a message some internalized ― to encourage the public to donate money to fund research and a cure.
This message and tactic had a very specific translation to her as a kid, said LaVant.
“You’re just wondering if you’re going to die, to be honest with you,” she said.
Evans, who is queer, trans and non-binary, became a poster child for the MDA at the age of 10. They were instructed to use this donate-or-kids-will-die fear tactic to raise funds when they appeared on the telethon, they told HuffPost over the phone.
“They’d tell me, ‘Everybody loves you! If at 3 a.m. and nobody’s calling, can you put out a heartfelt plea?’” Evans recalled. “And I would get up there and say, ‘Please let me have a life. I’m 10, don’t let me die. Can you please donate? You’re going to let me be able to go to college and get married and have babies.’”
Like with LaVant, this negative messaging as a child messed with Evans’ head.
“I internalized it. I believed I needed to be pitied,” Evans said. “I believed I was less. That’s why every day until I was in my 20s, I was suicidal.”
How The MDA Tried To Fix It
In response to the criticism the MDA has received over the years, Lynn O’Connor Vos, president and CEO of MDA, said in a press release ahead of the new telethon that the organization’s updated version would be “firmly dedicated to ensuring that the neuromuscular disease community is accurately portrayed and celebrated in all of the programming with our community advisory committee providing counsel, and having representation on the Telethon production team and as part of the writing process.”
“Three years ago, our organization brought on new leadership,” the MDA told HuffPost in an emailed statement. “To adapt and update our approach, protocols and structure so that we could ensure that our programs and offerings meet the needs of all members of our community.”
The statement added, “We regret that anyone feels disrespected by incidents that may have occurred in the past.”
Former MDA board member Christopher Rosa, who has limb-girdle muscular dystrophy, was part of a volunteer advisory task force of adults with neuromuscular disabilities that the MDA consulted with for its new telethon.
The group, which consisted of “six to eight” disabled adults, was formed to help ensure the messaging in the revamped telethon “reflects the true, authentic voices of the families that we serve,” Rosa told HuffPost via Zoom.
This group advised the production and creative teams to make sure the messaging around the show “acknowledged the very real difficulties of living day to day with a neuromuscular disease,” according to Rosa.
He added, “But at the same time, articulating the experience of people with neuromuscular disease in the way that we see ourselves, and in the most empowering terms.”
The Reimagined Telethon
On Saturday, “The MDA Kevin Hart Kids Telethon,” aired live on YouTube at 8 p.m. ET for two hours and raised $10.5 million, per the MDA.
It featured celebrities like comedian Loni Love, musician Fat Joe and actor Leslie Mann answering phones and cracking irreverent jokes, as well as taped segments from stars including Michael B. Jordan, Cindy Crawford and David Beckham.
Though the new telethon was in some ways significantly different from its predecessors, some disabled people said it still missed the mark.
Wolinsky called the fundraiser “just plain strange” and an event that was “completely missing some major opportunities to address significant issues facing our community.”
Dan Levy, best known for comedy series “Schitt’s Creek,” also taped a segment for the telethon. Some in the disability community expressed their disappointment that he appeared in the fundraiser, especially since he crafted so many authentic and touching storylines about the LGBTQ community in his beloved series.
Levy’s segment acted as an introduction for “classic moments from telethons past,” a montage of old footage from the Lewis-era event ― something that could be seen as strange choice given the heavy criticism past telethons received from many in the disability community.
Wolinsky shared with HuffPost a self-made “MDA Telethon Bingo Card” with each square filled in with predictions about potentially offensive things she thought might happen in the new telethon. Two of the squares on the card read, “Jerry’s legacy is highlighted” and “Old telethon montage.”
Another controversial decision was featuring Bryan Cranston in a taped segment in which he wished the telethon a happy 70th birthday. In 2019, the “Breaking Bad” star received backlash from the disability community when he starred as a quadriplegic in the movie “Upside” (co-starring Hart), with critics noting there are very few film roles for actors who are wheelchair users.
Like past telethons, the fundraiser also included a lot of kids with neuromuscular disabilities. The new event avoided blatantly offensive “half-human” language or suggestions that all the kids participating were going to die if viewers didn’t donate. But it still perpetuated harmful ways of viewing disabled people, disabled critics said.
The MDA did not immediately respond to HuffPost’s request for comment on criticisms about the new telethon after it aired.
The kids each had a brief taped introductory segment, and then Hart would interview them. The children and young adults described things they enjoyed doing, like creating art, skiing, swimming, joining a choir or LARPing society, watching Marvel movies or living on a college campus. Hart made remarks that he was “very impressed” by their interests and activities and said they inspired him to “feel all warm inside.”
Though Hart’s sentiments about these kids may have seemed empowering to some, he was using language that disability activists have long said is laden with ableism, a term that describes discrimination against disabled people.
“The language used at the ‘MDA Kevin Hart Kids Telethon’ evolved from pushing the false narrative that kids with [neuromuscular disabilities] are dying to a continued ableist rhetoric that we’re somehow inspirational for simply living our lives,” Kendra Scalia, a health care policy analyst, disability advocate and former MDA poster child told HuffPost via Twitter.
“Having a job we’re passionate about isn’t inspirational,” she said. “Enjoying hobbies like video gaming, skiing or art isn’t inspirational. Going to college and having a full class schedule plus extracurricular activities isn’t inspirational. These are everyday activities that people do. MDA’s message is that —because we’re disabled — the mundane becomes inspirational. That’s ableism.”
Scalia, who is also an NMD United board member, noted that non-disabled “doctors, family members, social workers” who were featured in the telethon for supporting disabled people were frequently referred to as “heroes,” and called that “ableist” as well.
“People helping others can be heroes, yes,” she wrote to HuffPost. “But people helping disabled people are not heroes just because we’re disabled. We’re ‘inspirational’ to MDA but if you noticed, not a single disabled person was ever billed as a ‘hero’. That’s ableism.”
The telethon also highlighted a few disabled adults. One was model and activist Jillian Mercado, who appeared in a sketch that included Jack Black shoving his crotch and butt into the camera wearing some very sheer underwear.
“Jack Black got down to his skivvies, in front of the only disabled adult performer they had. WTF?” Evans wrote to HuffPost via Twitter. “Why is that funny?”
The other disabled adults who were prominently featured included Rosa (the former MDA board member who spoke to HuffPost), and a disabled college student identified only as Gabrielle. Both appeared for a chat with Hart, who didn’t really explain who they were — aside from giving their first names and calling them “advocates” — to the viewers.
Gabrielle spoke to Hart about “Hill Day,” which she described as an “annual event that the MDA has” in which disabled people get to speak to “our congressmen and women and our representatives.” She said she spoke to Rand Paul and Mitch McConnell about accessibility issues.
This moment really stuck out to Steve Way, who has muscular dystrophy and is an actor on the Hulu’s “Ramy.” It showed that the telethon “still failed to address the fundamental problems disabled Americans face,” he said.
“Like when [Gabrielle] said that her senator is Mitch McConnell,” said Way, who was heavily involved with the MDA as a kid, told HuffPost in an email. “You can’t do that without also mentioning that he’s hellbent on cutting our Medicaid.”
Not every disabled person HuffPost spoke to panned the reimagined telethon.
Elizabeth Denehie, 47, who has facioscapulohumeral muscular dystrophy, is “probably one of the rare ones that is not anti-telethon,” she told HuffPost via email.
“As a teen and [young adult] I spent every Labor Day working the telethon, all 21 hours straight. We all knew the telethon was a way to get the money in by pandering to what ‘sells,’ which is sad stories about children. We also all had an understanding and joked about how once we reached 21 and aged out of summer camp we were no longer needed by MDA.”
She criticized disabled people who protest the telethon, saying that the money it has raised over the years has led to medications that have improved their quality of life.
“Too many disabled people out there think the entire world is out to discriminate against them,” Denehie said. “Or need to label everything ‘ableism or ablest’ and that is just not the case.”
Way said this year’s telethon “was better and less inspiration porn-y than previous years,” but added that it still had issues.
“I thought that they should have featured more adults who are teachers, lawyers, doctors, etc. while highlighting the accessibility barriers they encounter every day. But the MDA would never do that because it would be considered ‘too political.’”
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