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

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.
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.”

 As we embark on the post-MDA Telethon era — making this year 1 AJ (After Jerry) — I want to share an editorial from 1976 on the same subject matter I wrote about in 2005. (Both appear below.)
When I first published my article in 2005, I was aware of Laura Hershey’s and Harriet McBryde Johnson’s Telethon protests; finding these two other mouthy women who had muscular dystrophy galvanized me to mouth off, too.  In 2010, I threw my first MDA Telethon Viewing Party Bash: I’ll Never Watch Alone in part because a friend and fellow Telethon protester, Paul Longmore, had recently died. (The second was in 2014.) I gave a link to my 2005 article.
The little virtual event in 2010 paid an unexpected dividend:  Someone I’d just become acquainted with and invited to my Bash sent me his 1976 editorial, remarking on our similarity of thought despite a wide time disparity. That coincidence became remarkable to me for a very personal reason: The author who shared his writing with me over Labor Day weekend in 2010 went on to become my husband almost exactly one year later.

AT WHOSE EXPENSE?

From The Independent, Berkeley Center for Independent Living (CIL) Spring 1976

Editorial by Ken Stein

It’s the same old formula — a well meaning organization, dedicated to helping the handicapped, being represented by ads that “toy with our fears till coins and tears fill the room.” The rationale is that this type of advertising “brings in the bucks.” However, it also reinforces an image of disability already too well fixed in the public mind.

Save us from the people who would save us. It was time for a station break, and viewers were informed that something Union Carbide did today would touch their lives. Then came the public service spot: Brahms in the background and a field of flowers. After a while, a honey-voiced announcer singing the praises of “these 30 seconds of beauty-no wheelchairs, no crutches,” ad nauseam, followed by a plea for research funds. There’s a similar ad (if not in content, then in theme) that depicts a group of children playing merrily in a schoolyard. And behind the fence, there’s a little girl in a wheelchair, looking on sadly.

It’s the same old formula — a well meaning organization, dedicated to helping the handicapped, being represented by ads that “toy with our fears till coins and tears fill the room.” The rationale is that this type of advertising “brings in the bucks.” However, it also reinforces an image of disability already too well fixed in the public mind. The problem with “30 seconds of beauty” is that as long as normality is equated with beauty and happiness, people who will never be — or are not now — “normal” are left sitting on the other side of the fence. The irony, of course, is that such ads end up hurting the people they’re trying to help.

What may seem surprising is that, in fact, they end up hurting everyone. For like so much of today’s advertising, they are based on an assumption that what is normal is beautiful and what is not normal should be excluded. What happens when people buy *that* ad-line is that we all (disabled and nondisabled alike) end up scrambling to be “just like everybody else.” Unfortunately, the “everybody else” we’re all scrambling to be like is simply a fantasy. It’s something designed to define and standardize consumer needs, It sells products, being itself unattainable at any price. In short, we’re *all* left sitting on the other side of the fence. (Advertisers call this “creating a market.”)

Yes, research into causes and cures needs to continue, and funds need to be raised. But it’s possible to do this in a way that doesn’t so separate the disabled from the mass of humanity. Charitable organizations — let’s get with it!

I’ll Trade You the Pink-Ribbon Teddy Bear for Jerry Lewis Any Day

From Bay Are Business Women’s News, November 2005

by Ingrid Tischer

If I don’t put up with sexist behavior in order to get a paycheck, why would I excuse another kind of discrimination because it’s connected to a donation? I can’t imagine Equal Rights Advocates, where I work, promoting a spokesman at our annual luncheon who said, “My girls cannot go into the workplace.”

Every family has its stories. In my family, many of them end with The Debunking of the Experts. A classic one is about the first specialist the pediatrician referred my parents to when I wasn’t crawling. “She will never walk!” he is said to have declared. Say what you will about fearing the unknown; my parents were buffeted around by so much medical certainty, it’s amazing they didn’t develop whiplash.

Long story short, I did walk, and I went to school, even though a misdiagnosis required my parents to find proof I was educable. Later, I defied other odds and went to work. My family never expected anything else. That was fortunate, because if I lacked stereotypes that hold many girls and women with disabilities back, I also lacked role models.

No one else in my family is visibly disabled and I was mainstreamed after a “special” pre-school/kindergarten. I have almost always been the only “out” disabled person in my workplace. Once I tried to downplay the disability but now I question why I’m so often the one “special needs” employee: the woman with muscular dystrophy.

Last Labor Day was the 40th Jerry Lewis Telethon for Muscular Dystrophy. It was tough to watch mostly because of the cognitive dissonance of seeing people who are ostensibly like myself, yet not. Not because they’re more disabled but because they’re portrayed as wretched/heroic. So not me.

I’ve contacted friends and colleagues for the past two years, asking them to send emails of protest to the Muscular Dystrophy Association (MDA). I do it because I’m employed and too few women with disabilities are, a situation caused in part by the stereotypes the Telethon perpetuates.

Barbara Ehrenreich complained, quite rightly, about the infantilizing treatment she received after being diagnosed with breast cancer. MDA may think it has sidestepped that issue by using actual children in the Telethon. It’s hard to complain that Lewis is treating kids like children. But I’m pretty sure no one ever told Ehrenreich that she was half of a person because she had breast cancer. That’s what Lewis said on CBS Morning Show in 1999: Having muscular dystrophy makes you “half a person.”

Whenever I think about that, I want to say to Ehrenreich, “I’ll trade you the pink-ribbon teddy bear for Jerry Lewis any day.”

Minutes after I tuned in this year, a little girl was profiled in a video montage before she and her parents joined the host on stage. She sat listening quietly as her parents talked about how their little girl didn’t have a future.

Unlike “normal” children, she was “confined” to a wheelchair and could be “struck down” at any moment. You couldn’t see how these dramatic statements affected her because a “Call Now” graphic covered the lower portion of the screen — right where her face was, and where the face of any person who uses a wheelchair would be expected to be.

Here’s the thing: Little girls who hear they don’t have futures become women who don’t have jobs. And people will never care that women with disabilities are excluded from their work places if they think of us as faceless bodies with special needs instead of women with equal rights.

Ironically, the MDA Telethon is held annually over the Labor Day weekend, yet is presided over by Jerry Lewis who declared on air, “My kids cannot go into the workplace.” In an interview on CBS Sunday Morning, Lewis was not apologetic about using stereotypes, or his contempt for people with muscular dystrophy who object to being demeaned in this way: “If it’s pity, we’ll get some money. Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Lewis’ use of the word “kids” as in “kids in the workplace” and “Jerry’s kids” show how persistent — and unquestioned — stereotypes often are. We know Lewis isn’t saying kids should work. He meant “adults.” Who he feels entitled to refer to as children, which is excused because he “means well.” Many women couldn’t care less that a man can “mean well” when he calls a woman a “girl.” Or “sweetie.”

If I don’t put up with sexist behavior in order to get a paycheck, why would I excuse another kind of discrimination because it’s connected to a donation? I can’t imagine Equal Rights Advocates, where I work, promoting a spokesman at our annual luncheon who said, “My girls cannot go into the workplace.”

According to the Center for Research on Women With Disabilities at Baylor College of Medicine, 26 percent of women with disabilities live below the poverty line, as compared with 10 percent of women without disabilities; and 31 percent of women with disabilities are employed full-time, as compared with 69 percent of those without disabilities.

These numbers show the effects of the stereotyping and discrimination to which women with disabilities have been subjected for too long. That brings us back to the “question” about girls with disabilities and their futures. Are those futures going to be better than these grim numbers predict they will be?

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

  1. Pingback: When It Comes to Inspiration Porn, “Role Model” Is My Most Effective Anti-Inspirant* | Tales From the Crip

  2. Pingback: Fundraising and Inspiration Porn: How Does Your Messaging Rate on the Jerry Scale? | Tales From the Crip

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