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photo of MDA fund raiser in jail


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"Thank you for your support in freeing me, but . . ."

By Ingrid V. Tischer

Once again, a thorny etiquette question has caused me to haul out my dog-eared copy of Disability for Dummies (there's a working group looking at changing the name -- there have been complaints) after I came across the following press release:

Jacksonville Community Leaders Go To Jail
To Free Children From Muscular Dystrophy

Jacksonville community leaders will be "arrested",
taken to "jail", and asked to raise "bail"

JACKSONVILLE, FL (PRWEB) August 12, 2004 -- Community and business leaders have been accused of having a big heart and there is a warrant for their arrest from the Muscular Dystrophy Association. On Thursday, August 26th, from 9 a.m. until 3 p.m., the guilty will be transported to Dave and Buster's. There, they will spend serving their time and raising "bail" by soliciting donations from friends and family.

USO Sergeant John Schnippert will be picking up the jailbirds, providing security for the event, and dropping the jailbirds off after they raise their bail. Patients and families affected by neuromuscular diseases will also be present at this event to see first hand how the money is raised.

The MDA Telethon Executive Lock Up (TELU) is part of a yearlong fundraising campaign, which is spearheaded by the annual Jerry Lewis Telethon. The money raised is used to fund research, send deserving Jacksonville children to summer camp, and provide treatment to people in the Jacksonville area that suffer from over 40 neuromuscular diseases.

Apparently they were up to the same thing in Houston.

How we raise money says a lot about our attitudes toward the cause we want to fund.

You know, this fills me with so much feeling, I have to share some more: I've committed my own share of pun-related atrocities over the years but what with the fawning news item I saw earlier this week about the Wal-Mart wedding chapel for people with disabilities, it's been a good week for bad taste and disabilities.

Fine, call me a left-coast elitist. I can live with that. After all, I'm already living with (sniff) an affliction. But the item above, God help me, makes me think about those cheesy male dancers who show up dressed as cops and I doubt anyone in Jacksonville would appreciate that image. And I'm not even going to go into what "Wal-Mart wedding" calls to mind. I've always been opposed to three-strikes law but perhaps I've been wrong. No doubt these people are going to keep getting arrested. Enough's enough. And charge MDA with conspiracy while you're at it. Get them and you get rid of the problem.

No one pays much attention to the secondary disability that is disability-related bad taste or the quandary I find myself in when faced with a well-intentioned person who is expecting a thank you for doing something I find outrageous. I was raised to be nice and despite my efforts to sink below my upbringing, often fail to find just the right combination of nonviolence and cojones. Fortunately, D4D always has something useful and when I looked, there it was in Chapter 16, "Don't Bother With a Lecture, Just Tell Them What You Want."

I simply inserted my particular situation into the brackets:

Dear Valued Supporter:

Thank you for your support in [freeing me from muscular dystrophy.] I am no longer accepting contributions from individuals, foundations, or corporate entities at this time in this program area.

I deeply appreciate your desire to be of assistance. In honor of your generous offer, I would like to introduce you to the program area that I am now focusing my work on. Equal Rights for Equal People (EREP) is an exciting social change initiative based on people with disabilities' identity as first-class citizens. Designed and led by people with disabilities for people with disabilities, EREP welcomes all those who are committed to the full and equal inclusion of people with disabilities in our society.

As always, thank you for choosing to be an ally to people with disabilities. With your help, we can end discrimination rather than the lives of people with disabilities. Remember, there's nothing "special" about oppression!"

Wasn't that easy?! I don't know where I'd be without D4D!

The irony was that I found the MDA press release on August 26, which is Women's Equality Day, commemorating when U. S. women were granted the right to vote in 1920. I thought, Too bad the folks who want to free me don't see how accessible voting places would do me more good than their odd little stunt. But hey, change takes time -- it's only been a problem since 1920!


Why I Criticize MDA and the Telethon

To say that many people think I'm on shaky ground criticizing MDA is an understatement. That's the challenge to me. I received no-cost medical services as a child, including a spinal fusion; they covered most of the cost of my Milwaukee back braces, and I am still eligible for some medical care. I went to camp once. At this point, MDA's funding goes largely to research versus services such as my surgery or appliances. This reduction in funding services took away MDA's relevance in my life. I know not every person with muscular dystrophy feels that way.

MDA exists to serve people who have muscular dystrophy. I am one of those people. No matter how I judge their performance, I am part of their community. This is why my opinion has relevance even if it lacks authority to change organizational policy. (And that is very much a whole other, huge issue -- how decision-making and fund allocation happens within one of the country's largest non-profits.)

MDA's stunts -- and their Telethon -- feed the disability stigma that is the true cause of much of the "suffering." And the damage caused by their silence on disability rights policy issues such as assisted suicide and medical rationing is incalculable.

I don't have a lot to do with MDA today because their basic message is antithetical to my view of myself as a woman with a disability. I don't believe the world will be a better place without muscular dystrophy, which is to say, without me. My interpretation of their mission involves a diagram of my body that looks like a butcher's diagram of a cow. My muscular dystrophy isn't even one of the "lesser cuts." It's more like an inedible bit. Their preoccupation with research is to prevent that horrible, useless part of me. Breed that sucker out like a vestigial tail. Like you could have me, suffering-free, if you tweaked my genes. Little do they know that my will to complain has the smooth, compact power of a trained seal. I will always find something to agonize over, as will everyone else. If that weren't true, we wouldn't have Botox. Only a species hard-wired to suffer would inject deadly bacteria as a means to prevent laugh lines. Now there's a telethon I could enjoy watching.

Not to mention that shuffling the players in a society that continues to permit disability-related discrimination will do nothing to reduce inequity. Except get rid of some of the relatively few people with congenital disabilities whose significant life experience with disability makes us ideal for refuting entrenched biases.

MDA is a powerful force in this country. It's a fundraising giant. As such, they have enormous potential to improve the quality of life for all people with disabilities. The damage caused by their silence on disability rights policy issues such as assisted suicide and medical rationing is incalculable. Their high-profile (to say the least) Telethon, and smaller efforts like the Lock-Up feed the disability stigma that is the true cause of much of the "suffering" touted by Jerry Lewis, et al, in our lives as disenfranchised citizens.

For anyone who complains that I don't know enough about the Telethon, I say this: "I know plenty because I'm out here everyday living with muscular dystrophy. When I ask folks, 'Why is there a Telethon?' they answer, 'Because I can't imagine having to live like that.' Then there's sometimes a hasty, "No offense.'" It doesn't really speak to the question but it's the answer I get most often. That answer is stigma, straightforward and succinct. And provided by the Telethon that purports to improve our lives.

I do take offense and I take it right up to the MDA development office's door and leave it there. Sometimes I even wish it was a flaming bag of poo. I don't leave it at the MDA clinic staff's door. Or the people of Jacksonville or Houston. Though I'm none too happy about them either.

IIt may be hard to believe but I don't like buying into the whole enemy-consciousness thing. I'd rather see the people who participated in the Lock-Up and who contribute to the Telethon as potential allies. MDA, as the sponsor, host, and beneficiary, needs to step up and set the appropriate tone. Donors are clearly following MDA's example.

If MDA's message and activities expressed the core value that people with muscular dystrophy are equal people, who need exactly what people without muscular dystrophy need (respect, access, tools appropriate to their needs), the fixation on cures, on fixing broken people or simply preventing their existence altogether, would be balanced by services based on the acceptance that living with muscular dystrophy is not a synonym for suffering.


Speaking as a Fundraiser . . .

It's particularly hard for me to watch MDA's fundraising activities because I'm a fundraiser myself. But I don't work from the charity model.

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. Two contrasting examples come to mind: the recent and regrettable controversy around AAPD accepting a $26,000 corporate contribution from Diebold, manufacturer of accessible voting equipment; and the loose-knit coalition of African-American organizations in the Bay Area who declined contributions from Philip Morris in the spring of this year. The coalition's reasoning was that the company's practices were harmful to their constituency and accepting a donation "green-washed" the company's image, which then made them a stronger corporate player capable of more harmful behavior toward African Americans. Short version: the ostensible support actually undermined their missions.

Wal-Mart Wedding Chapel for Customers With Disabilities

(AP) Somewhere between the junk-food aisle and the automotive department, Pat Byrd and Bill Hughes fell in love.

So it was only natural that they should marry where the magic happened -- Wal-Mart. "It never dawned on me to have it anyplace else," said the 55-year-old bride.

Neither bride nor groom work at the discount store. Still, they spend more time there than many employees do, wandering the aisles and visiting friends for up to six hours a day, nearly every day since the store opened two years ago.

"I talk to people and walk around for exercise, and we always buy a soda or a sandwich or something," 51-year-old Hughes said. "If we're not here, the store people worry about us. They're our family."

Both Pat Byrd and Bill Hughes have disabilities. They met nine years ago, when Bill was a patient at a North Idaho hospital and so was Pat's sister.

"He doesn't drive, and any time he went to Wal-Mart, I'd take him."

They celebrated their blooming love with a ceremony Friday in Wal-Mart's garden center. The store manager was a groomsman, and a fabric department employee was matron of honor.

A garden center employee, Chuck Foruria, walked alongside Pat as she rode her motorized shopping cart down the makeshift aisle, her oxygen tank in the basket.

The results of the two different situations were, well, you be the judge: AAPD got criticized on the New York Times editorial page; the coalition members got a laudatory article about their position in the San Francisco Chronicle and a subsequent editorial praising their policy. Not too bad -- increased public knowledge and credibility for their work. All for the price of putting their ethics into practice. In this time of dwindling foundation money, individuals' trust in your organization is all that much more important. Advocacy organizations especially need to be vigilant about institutional donations. I'm a big supporter of Breast Cancer Action (disclosure: I used to work there) precisely because they're the only private breast cancer advocacy group in the United States that does not accept government money or corporate contributions from the pharmaceutical industry. They can present their data on treatment, policy, and causes without any potential conflict of interest.

Mind you, the idea of turning down money is about as radical to well-intentioned, cash-strapped non-profits as you can get. Money's a touchy subject --- I think I had an easier time broaching sexual practices in my days as an HIV counselor!

Personally, I'm praying for the day when good taste becomes the law of the land. When that day comes, there will be huge, echoing silences throughout the MDA development offices and the FBI Most Wanted List will feature a mug shot of A Certain Someone who is quite popular in France. Then I, and others like me, will be free to enjoy the Labor Day weekend as our fellow citizens do: tequila slushee in hand, smelling hunks of meat blackening on the grill, and wearing our whites for one last time (though in SF we're also wearing winter coats).

Join me, won't you? Together we can wipe out bad taste in our lifetime.

Posted Sept. 1, 2004

Ingrid V. Tischer lives in San Francisco, where she is a fundraiser for a nonprofit corporation. Her last article for Ragged Edge was No Guts, No Glory.

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