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

Continue reading

How to Do Inclusive Philanthropy: Introducing #DisabledInDevelopment

A Crip in PhilanthropyI’m a in grant-making ! Whoopee! As of November 1, I became a Trustee of Awesome Foundation’s Disability Chapter. It only took 25 years of being on the grant-seeking side of . I’d like to thank every teacher and boss who helped me with inaccessible toilets along the way.  You had my back when I was angry about something even I didn’t fully understand: I was up against a real thing – ableism – that created structural barriers to doing my job well.

And that brings me to: How to Do Inclusive Philanthropy.

Actually raising money, day in, day out, at DREDF doesn’t leave a whole lot of time for big-vision work. But I have one for inclusive philanthropy:

Philanthropy that has evolved from being the hothouse for benevolent ableism to a force for fighting all forms of ableism. Wash that charity right out of its hair.

I could spend months fine-tuning an inclusive philanthropy action plan but I’ve got a year-end campaign to run. So. Here are what 25 years of being disabled in development tell me are the ways to start scrubbing the charity model out of philanthropy:

1. Go inside out, bottom up.

Start by respecting the knowledge your current staff likely has, especially your front-line, support, and administrative staffs. 

The key: Lose your bias for titles and fancy degrees, and find out who in your organization has an interest in flexible schedules, paid family leave, and other such benefits. Why? Because disability, chronic illness, and aging may be driving that interest. Because they may feel they’ve been “special tracked” and blocked from moving up. That makes them more likely to have a vested interest in disability inclusion.

Why: Real change takes dogged persistence and these employees could well be your long-haul champions for transformative change.

2. Demonstrate that disability inclusion is not “the Other” in your philanthropic organization.

One of the most common misperceptions about disability is that it’s just not something your organization “does.” Fill out this simple “disability inventory” and you may well see disability is all around you, but called something else. 

Why: There absolutely will be folks in your philanthropic organization who believe disability = other people. They’ll be more receptive to the dogged persistence of your disability champions if it doesn’t mean “new stuff.”

3. Organize. Organize. Organize.

Help tell the real-life, true experiences of being disabled in development so that our invisible knowledge can help make glorious, ableism-ending change in philanthropy. Contact me if you’d like to be profiled (by name or anonymously) and featured in my new #DisabledInDevelopment series. I’ve got brief interviews with 3 amazing people — all women of color — in the works.

Compensation available because I don’t expect unpaid consulting from disabled people.

Why: So, so many people in philanthropy do not have the option of being out, safely, as disabled. #DisabledInDevelopment is intended both to help normalize disability in the sector and to provide an accessible platform for describing the structural discrimination they encounter and that all-too often halts career advancement or forces them out when they “hit the porcelain ceiling.”

Continue reading

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.”

Continue reading

Working While Disabled: All About M.O.I. Versus the T.E.A.M. Access Approach

BIPAPST

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.

Signed,

Feeling like an Uninspired, Unmotivated Kid with a Disability

Dear FUUKD,

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:

Motivate yourself

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.”

Continue reading