Why do you want to end the telethon?
For a lot of reasons. Here are just a few:
- The telethon exploits disabled people, particularly disabled children, to raise funds. It brings them out as props while their family members or television hosts tell their stories. The disabled person themselves is rarely, if ever, given their own agency. There are much more ethical ways of fundraising.
- The telethon pushes a narrative of “dying children” to create a sense of urgency and leverage donor’s emotions. However, this is simply inaccurate. Many forms of neuromuscular disabilities (NMD) are not fatal, and those with NMDs of all kinds are living longer thanks to medical breakthroughs (many financed NOT by MDA, but by condition-specific organizations like Cure SMA) and technology such as ventilators, cough assist vests, and other forms of breathing support. There are many adults with NMDs who are surviving and thriving.
- Jerry Lewis had a long history of bigotry, both associated with the telethon and not associated with the telethon. He consistently pushed the narrative that his “kids” (some of whom were adults) could not work or really enjoy life in any way. (“My kids cannot go into the workplace. There’s nothing they can do. They’ve been attacked by a vicious killer. I’m begging for their survival.” -1992 MDA Labor Day Telethon). In a horrific 1990 piece published in Parade Magazine, Lewis called people with disabilities, particularly wheelchair users, “half-persons”, and admired the “courage” of adaptive athletes. Though Jerry Lewis is dead and the telethon is now hosted by Kevin Hart, for many people, Jerry Lewis defined the telethon, and his legacy, unfortunately, will not be easily erased.
- MDA is the only national organization in the US still using telethons as a fundraising tool. While there are sporadic local telethons, other large national organizations such as Easter Seals and United Cerebral Palsy have found other, better ways to fundraise over the years. It’s time for MDA to get with the times and do the same.
For a comprehensive analysis and history of telethons as a fundraising tool, we recommend Paul Longmore’s book Telethons: Spectacle, Disability, and the Business of Charity.
Do you want to just end MDA’s telethon or all telethons?
While this effort is focused on the MDA telethon, and the MDA telethon is currently the only large national disability telethon that still exists, telethons as a concept are inherently exploitative and performative. We believe that there are much better ways to fundraise.
I thought the MDA telethon didn’t exist anymore?
It’s back. Like a zombie. This time, it’s being branded the “MDA Kevin Hart Kids Telethon” and streamed on a variety of platforms.
Isn’t the telethon better now that Jerry Lewis is gone?
Telethons as a concept are still fundamentally ableist and furthermore, there is no way to separate Jerry Lewis and his legacy from the telethon. Furthermore, early advertising for the telethon suggests that MDA is still falling back on ableist, outdated tactics, using photos of children (mostly white children) to tug on donor’s heartstrings, and centering cure messaging, like this image below.
Doesn’t the money help people?
MDA spends most, if not all, of its revenue on medical research and diagnosis. As of 2019, all of the grants MDA gave out to local organizations were for medical diagnosis and research. Research into a cure is great for those with NMDs who want a cure. But the money isn’t doing anything to help people with NMDs who are living right now, today.
What are some organizations that actually help people with NMDs?
NMD United is an organization run by and for people with NMDs. Smaller organizations like Cure SMA are doing great research into specific forms of muscular dystrophy and related conditions and because of their work, some breakthrough medical developments have occurred in the last few years.
With everything else going on in the world, aren’t there more important things to focus on?
We agree! MDA could be focusing on the staggering death toll of COVID-19 in congregate care facilities, the lack of personal protective equipment for consumers and personal care attendants, medical rationing, the perilous state of the Affordable Care Act, or any number of terrifying things that are affecting the disability community right now. Instead, they’ve decided to bring back the telethon at a time when disabled people are literally dying – not from NMD, but from lack of access to healthcare, medical rationing, and being trapped in overcrowded, unsanitary congregate care facilities like nursing homes – perfect fertile ground for COVID-19 to spread like wildfire. It’s well documented that media can influence what people think, and with the dismal state of disability representation in the media, the MDA telethon is still likely to be one of the only times the general public sees people with disabilities on their television screens. The telethon spreads the message that people with NMD (and disabled people more generally, since the layperson generally won’t be able to tell if someone has an NMD or another disability) are pitiful children with one foot (or wheel) in the grave, who are sitting around begging for a cure. This messaging can have devastating effects during a time when disabled people are already being treated as acceptable sacrifices.