Dear Kevin Hart, The MDA is Heartless
Dear Kevin Hart, The MDA is Heartless
Dear Mr. Hart,
I’m writing this letter because you and I share some important commonalities, and I hope my letter to you today might impact your legacy as an entertainer and philanthropist for the better. Exploitation, whether it takes place in the entertainment industry or for fund-raising purposes, is unacceptable. Here is my story and the story of other people with neuromuscular disabilities.
During the early 1980s, I gained some notoriety playing the role of Poster Child for the Muscular Dystrophy Association. Because I looked pretty cute and pretty physically disabled with a walker and a helmet to protect my darling blonde head of hair, local telethon producers brought me out to film sets and different scenic locations to shoot footage for the MDA Labor Day Telethon. I earned a backstage, bird’s eye view of the smoke and mirrors’ show created year after year to raise millions of dollars for the Muscular Dystrophy Association. I’m including a few photos of me from the newspaper from when I was seven years of age. That year, 1984, the MDA raised $31,510,376 by using beautiful, happy, disabled kids to sell themselves as less than.
When I note that these kids were “like myself,” I’m referring to young, white, cute, kids from middle-class families living with a rare muscle disease. Kids who didn’t resemble me or come from where I came from rarely appeared on television, and this includes telethons. The MDA largely ignores Black, brown, and poor kids (and adults) for the same reasons that emphasize why we’ll never see any telethons for all the children in Flint, Michigan, who became disabled from the poisonous drinking water. Underrepresentation on many, many fronts plagues disability-driven charities due to deeply rooted and racist biases surrounding American Generosity. If you’d like to read more about it, I highly recommend Dr. Paul Longmore’s research and book on the telethon’s history, Telethons: Spectacle, Disability, and the Business of Charity (Oxford University Press, 2016).
My childhood memories reflect other adults’ memories around the country who grew up feeling icky about the MDA and the pity propaganda this organization dished out about our lived experience. My friend and Artist, Raul Pizarro, summed it up best when he said that the MDA Telethon of his youth “left my parents, and eventually, I rattled and afraid,” and “not able to see a future – much less one with meaning and fulfillment.”
Other friends spoke of how their memories of the telethon consisted of two contrasting feelings. The first feeling was Wonder because, during Telethon Weekend, we’d get to see hundreds of other kids who looked and lived as we did from all around the country. When you go through life never seeing “your kind” on television and then finally seeing yourself, it’s incredible. The second feeling could be described as “fucked up.” They felt it was fucked up when they saw their moms glued to the television, grieving through every segment of the telethon that told them that their child would never — fill-in-the-blank (go to college, fall in love, etc).
“I wish the MDA telethon allowed us to grow up dreaming of our long lives and prosperous futures instead of fearing an early death,” Raul told me. Other peers I talk to, who grew up to become the exact opposite of what the MDA promised we would become without a cure, echo Raul’s wish over and over again.
Disabled people survive and thrive without a cure or support from organizations like the Muscular Dystrophy Association. For millions with inadequate health care coverage, many struggle for vital equipment such as wheelchairs that may require multiple appeals. And still, we persist. We succeed because a vocational rehabilitation counselor, who sees our worth, agrees to sponsor our journey through college, even though the unemployment rate for people with disabilities is twice as high as it is for people without disabilities. We get up in the morning thanks to a team of personal care attendants, who make less than ten dollars per hour with no benefits. Furthermore, those who have lived through and beyond our childhoods can tell you just how little the MDA has impacted our quality of life because no medicine can fix the plague of a society that sees us as burdensome and broken.
Rather than the MDA reviving their we-need-a-cure schtick, this big charity business doubles down during a global pandemic to not fundraise for necessary personal protective equipment for at-risk people with neuromuscular disabilities or for financial relief for overworked and essential home healthcare workers. The Muscular Dystrophy Association will not hold this telethon to directly help families who cannot easily pay to relocate when a family member needs to isolate with the coronavirus or whose accessible home has been devastated by wildfires and other natural disasters. How do I know they won’t do this? A half a decade ago, the Muscular Dystrophy Association emailed its members and announced cuts to all direct funding for families and adults living with neuromuscular disabilities. Now, all money raised goes to Research, and as Dr. Paul Longmore will tell you, trying to track funding streams for “research” is about as fun as trying to track down a certain president’s tax returns.
Finally, before you decided to host the Muscular Dystrophy Association’s telethon, your predecessor, like yourself, was a comedy legend. My grandparents raved about his goofy non-stop energy and his fierce determination to cure children like me. They excused his homophobic hate when he called someone a slur for gay people during the telethon and the hurtful words a result of too much alcohol and little sleep. How dare we ungrateful disabled ‘kids’ cross our beloved “daddy”? Jerry Lewis said we should be thankful that we, his Jerry’s Kids, whom he also referred to as “half persons,” had him to save us from a lifetime of misery and tragedy.
You may have good intentions to raise money for the Muscular Dystrophy Association and your own foundation’s charity at the same time, but I implore you to think about how this particular partnership will reflect on your life’s legacy. I doubt a good man would want to support a fundraising machine that exploits children and sends out distorted messages about their struggles and futures. And I suspect that a professional entertainer would not want to devote his time and talents to encourage his fans into giving their hard-earned dollars to fund a charity that doesn’t directly help the people impacted.
During a pandemic, with a crisis of affordable and accessible housing, diminished employment opportunities due to preexisting conditions or discrimination, and inadequate funding for home and community-based services or working medical equipment, I imagine that a huge star would want the results of his generosity and influence to make the most difference.
Any charity that ignores the genuine critiques and struggles of the actual people they are claiming to help is heartless. Please consider saying no in hosting future events with the Muscular Dystrophy Association Telethon. If you want to be a real ally with the disability community, help me and other exploited former children cancel the Muscular Dystrophy Association Telethon for once and for all.
Emily Wolinsky, former Jerry’s Kid and disabled advocate
Executive Director and Founder, NMD United
Dear Julianna: Interview with Emily Wolinsky and Laura Halvorson, Part One and Part Two, Disability Visibility Project.
Emily Wolinsky is President of NMD United, a grassroots, volunteer and disability-led and driven non-profit organization, which provides virtual peer support, independent living grants and community initiatives to adults living with neuromuscular disabilities. In 2019, NMD United reimbursed over one-hundred adults living with NMD for medical and disability out-of-pocket expenses (with a $15,000 budget funded through direct donations from our supporters). Wolinsky also hired and managed over twenty independent contractors with disabilities to help promote, organize, and deliver our programming focused on developing virtual independent living skills.
Ms. Wolinsky holds two master’s degrees in Educational Counseling and Educational Administration and has over twenty years of professional experience working to improve the lives of others living with disabilities. She resides in Austin, Texas with her partner of seven years and two pups. When Emily isn’t leading NMD United and working at her day job, she spends her time writing, reading, consulting, and trying not to pay attention to the Muscular Dystrophy Association (unless, of course, they make her mad).
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