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

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.

“I call it ‘pimped for profit,’” Dominick Evans, a disability-rights activist and former MDA “poster child,” tells Yahoo Life.

“The Muscular Dystrophy Association recently announced its celebrity-studded telethon would be returning after a six-year hiatus.

Claire Pires, a publicist for the MDA, tells Yahoo Life that Mattlin’s piece “does not reflect the current MDA mission.

‘Look at these kids, their life sucks.

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!

It’s wrong to manipulate people into donating to these children, when much of the money lines the pockets of a charity’s top executives.#EndTheTelethon.

As someone who lives with Muscular Dystrophy, the MDA Telethon has caused a lot of damage to disabled folks for decades.

“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.’”!

“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.

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.

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.

“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.”.

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.”).

With the pandemic practically eliminating other funding sources, Pires 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.

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.

You don't have to denigrate disabled people to raise money for disabled people.

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.

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.”.

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