This post is part of a blog-weekend protesting the re-emergence of the Muscular Dystrophy Association (MDA) Telethon. Sadly, Kevin Hart and MDA are bringing the charity model and Jerry Lewis back like Zombies of Ableism on October 24. We, the Not-Walking-Not-Dead-Yet, have to use our social capital to stop them in their tracks as the Hartless Crips we are.
I’m proud to be one of the disabled activists organized by disabled filmmaker, writer, and activist Dominick Evans to once again protest an event that perpetuates disability stereotypes, spreads misinformation about neuro-muscular diseases to increase donations, and utterly ignores structural ableism. In 2015, I wrote about the end of the Telethon that inexplicably ran every year on Labor Day and was presided over by the guy who claimed his “kids” could never go into the workplace.
This post revisits portions of it with an eye to the continuing issue of employment – if only because disabled children will once again be working at the Telethon for their health care, and potentially taking some very concerning lessons away from that experience about consent and power. Thank you, Dominick, for your leadership!
Hands-OFF Fundraising in 2020: Consent, Consent, Consent
→ In 2020, we need to critique this 2010 image from the Muscular Dystrophy Association (MDA) Telethon in terms of consent as much as we do its infantilizing attitude and fundraising tactics that use disabled people as charity props.
→ MDA needs to be held accountable for their broader transactional narrative in which disabled children are expected to allow strangers to touch their bodies as part of obtaining money for their health care.
→ The “new” Telethon is being held on Oct. 24, during National Disability Employment Awareness Month (NDEAM). There is a connection between the MDA Telethon and employment. What we learn as children is carried into adulthood. The lesson here can too easily become, “I need my paycheck so I have to put up with my boss touching me.”
MDA, Jerry Lewis, KFC, and a bucket of reasons why disabled children shouldn’t be used as props in cause marketing charity campaigns.
BONUS! Go here for “Stuff I Know As a Fundraiser Who Has Muscular Dystrophy and Why It’s (Past) Time for MDA to #EndTheTelethon”
BUT WAIT – WE’VE GOT EVEN MORE BONUS! Go here to read why Girls Scouts are better fundraisers than MDA’s executives
When your organization’s fundraising tactics undermine your mission – as dehumanizing your own people does – your fundraiser efforts can only be judged a failure. No matter how much money you raise.
This Labor Day weekend has me feeling celebratory because there’s no Muscular Dystrophy Association (MDA) Telethon on the air for the first time in 49 years.
This is great. If you’ve got that particular diagnosis. If you don’t, you may still have a problem. If, say, you’re diagnosed with autism. People with autism are still dealing with the same dynamic of destructive messages in the fundraising that purports to help them.
Criticizing how funds are raised generates a whole lot of anger if the critics are among those who are said to benefit from the efforts. That’s why cross-disability solidarity, disability history, and telling our own stories are so important. The medical model of disability would keep us separated by diagnoses — different and disconnected — but the social model can bring us together — unique and united — through common concerns for our rights.
I’ve said it before and it’s still true: “I look at fundraising as a means of not just supporting social change but in promoting it as well. How we raise money says a lot about our attitudes toward the cause we want to fund.”
Dear Respironics Bi-Pap S/T,
I’m feeling like such a loser because I can’t get hired for even one job and all I’m suddenly hearing about is this big push for disabled people to get employed. And then there are disabled people like this guy who act like it’s just my attitude that’s the problem.
Feeling like an Uninspired, Unmotivated Kid with a Disability
First, take a deep (assisted) breath. Now let’s get your head right: Go watch the late (god, I hate writing that) Stella Young’s epic take-down of inspiration porn.
Sure, you’re going to hear that all landing a job, or whatever, really takes for a disabled person is to adopt the All About M.O.I. approach. That narrative certainly has the charm of simplicity, plus it comforts you by giving you all the control. Meaning: If you’re not yet working, for example, it’s just that you’re not trying hard enough to:
Overcomerate your disability
Inspirate all who meet you with your “What, me disabled?” attitude
But there’s a more accurate name for this narrative: Magical thinking.
“As a Respironics Bi-Pap S/T, I support you venting because you have to manage your pressures and everyone’s settings are different. Venting, moreover, leads to bitching and bitching can lead to some very interesting shifts in what you think personal responsibility can accomplish versus what takes political action.”