This #NDEAM, Let’s #Consent to #EndTheTelethon and Dismantle the Charity Model – Again

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

Telethon screenshot. Lewis has his hand grabbing a young girl's knee. "that we are about to present and it's for her and a million other of my kids"

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.”
Past KFC/MDA print ad saying, "On May 24th, show this child you care," with an explanation of why buying KFC will help kids. Lewis has his arm wrapped around a small boy in a wheelchair

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

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Letters to a Young Fundraiser: The Philanthropeon Wars and the Fall of Telethonika

My Dear Friend:

You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.

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Fundraising and Inspiration Porn: How Does Your Messaging Rate on the Jerry Scale?

Screenshot from a Shriners' commercial of a young white boy in a manual chair.

The only disability in life is a bad attitude…until you factor in #inspirationporn like, “Love is…walking,” that Leo Burnett and Shriners’ thought was a super-appropriate slogan for a kid in a wheelchair to say. For Shriners’ fundraising stragedy campaign. For $$.

Sure, I’ve been critical of the charity fundraising model. Sure, I’ve had some harsh things to say about inspiration porn.  And, yes, I’ve argued that children with disabilities can be valuable comestibles.  None of that precludes me from providing a valuable Professional Fundraiser’s Assessment of the Shriners’ commercial above:

The problem with this ad for Shriners’ Hospital is that it doesn’t go far enough. It goes right up to the edge and hesitates.

Bottom line: If you’re not inspiring AND terrifying your audience, they’re not hearing why they should give to you to make you stop talking.

My 3-Point Pointers for Insperrifying™ Medical-Model Messaging (3M™)

  1. Love = Cure. You’ve laid the groundwork, now close the deal. You’ve got the kids believing love is about walking. Now have them say what you really mean: “My parents will hate me if I can’t walk!”
  2. Kids ♥ Begging. Whether it’s for a puppy or surgery, kids are world-class chin-tremblers. Yet you haven’t even given them the tools they need.  What, Shriners’ can’t afford a couple of tin cups?
  3. Follow Your Non-Bliss. On-camera talent should appear in naturalistic settings that echo your message of disability = despair. A seclusion room in a badly run public school.  Waiting at a stop where the bus rolls by them. Watching fundraising commercials for people “like that.”

Remember: Real World Fundraising™ measures itself on the Jerry Scale. On the Jerry Scale you have to scare to score!

Wishing you all a very happy #GivingTuesday on December 1st!

This Labor Day, Let’s Commit to Wiping Out the Charity Model for All People With Disabilities in Our Lifetime

Photo of Jerry Lewis with his infamous quote about how muscular dystrophy would make him half a person.

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.”

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