Saturday, August 12, 2006

Blue lily: The pity "conundrum," part one

This is a really long post, so I've divided it into two entries and added subtitles. Part one includes some history you could skip if you know the facts, but the basic knowledge is important for making my point, which is in part two.

Coturnix, another guest blogger for Echidne, writes about "The Hooters Conundrum" and poses the question originally offered by Pharmboy:
Can Hooters support the fight against breast cancer all without being perceived as capitalistic, misogynistic, or otherwise demeaning to women?
Much simplified,
Coturnix argues that the symbolic Hooters sells sex (though not hardcore like at strip clubs), but the reality of Hooters is that many franchises are family friendly and money for cancer is good so the source doesn't matter so much. Also, the waitresses he's met were all smart, going to college, and had never ever worked as strippers. Some even had small boobs.

Responding to disagreeing feminists, Coturnix suggests that "the symbolic Hooters" is part of the past and society is evolving beyond any need to see the women wearing Hooters tank tops as sex objects. Besides, the women make more in tips than elsewhere and, with perverts, they "fully enjoy their power" to "
put the guy in his place with a smile and still part him from his money." Ahhh, family fun.

Obviously, I disagree, but what does this have to do with blogging about disability issues? The above question Coturnix poses is strikingly familiar to one that can be asked each Labor Day (Monday, September4, this year, for non-Americans) when the MDA Telethon relentlessly rolls around:
Can the Muscular Dystrophy Association Telethon and Jerry Lewis support people with muscular dystrophy without being perceived as paternalistic, pitying, and demeaning of disabled people?
First, some history.

The first MDA Telethon in 1966 was hosted by Lewis and covered by a single New York City television station. As the main fundraising event for the organization, the Telethon uses "poster children"-- now called "goodwill ambassadors"-- to advertise the diseases of MD, their effect on families, and the need for money for medical research.

Evan Kemp, who worked hard for the passage of the ADA and served as Director of the EEOC under Daddy Bush, wrote an opinion piece published in The New York Times in September, 1981. Ragged Edge reported on what Kemp said:

Society, Kemp charged, saw disabled people as "childlike, helpless, hopeless, nonfunctioning and noncontributing members of society." And, he charged, "the Jerry Lewis Muscular Dystrophy Association Telethon with its pity approach to fund raising, has contributed to these prejudices."

Kemp contended that such prejudices "create vast frustration and anger" among disabled Americans, then numbered at 36 million. Kemp charged that disabled people suffered far more from lack of jobs, housing -- lack of access to society -- than from the diseases MDA sought to cure. He accused the Telethon's "pity approach . . . with its emphasis on ('poster children' and 'Jerry's Kids' " -- of creating prejudice. He called upon the Telethon to reform; to portray disabled people "in the light of our very real accomplishments, capabilities and rights." The Telethon, he insisted, "must inform the public of the great waste of money and human life that comes from policies promoting dependence rather than independence."

Not much happened for about a decade. Except that the MDA tried to get Daddy Bush to fire Kemp and other charity telethons modified their approach a bit. Then in 1990, the Sunday Parade Magazine's Labor Day edition included it's annual plug for the MDA Telethon and Jerry Lewis writing as if he were a child with MD. Lewis wrote:
"I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person. I may be a full human being in my heart and soul, yet I am still half a person."
Irate former poster children nationwide began to speak up that their roles as children had been demeaning belittling experiences, that Lewis perpetuates the disabled person as pitiful and childlike, and that the charity mentality directly undermines the empowerment and equality the disability rights movement works toward. Cris Matthews and Mike Ervin, brother and sister and former poster children in Chicago, formed a group called Jerry's Orphan's. Matthews wrote to the MDA:
"Much attention is given to the kids who may not live to adulthood, but for those of us who do live on, not one word or one dime is devoted to the concept of independence.... No one is negating research or the individual's desire to be cured... [just] the attitude that stresses that, no matter what one does, life is meaningless in a wheelchair."
Ervin (of whom I am a huge fan) wrote that Jerry Lewis must go, and other good stuff. Again, see Ragged Edge for greater detail on all this. Laura Hershey in Denver, yet another former poster child, organized one of several 1991 Telethon protests and after a radio show received much hate mail labelling her as "selfish," "bitter," and "ungrateful." After each of these activists spoke publically, they received quite a bit of bullying from the MDA.

In one case, Hershey responded:
"If your attitude is representative of the Muscular Dystrophy Association as a whole, then I must conclude that the Association's problems go much deeper than just the offensiveness of the Telethon.... It seems to me that MDA has condoned, and even participated in, the widespread institutionalization of people with disabilities in this nation. . . . MDA, with its medical-model approach, has done little to provide independent living services and supports or to free its clients from the confinement of nursing homes."
The battle has continued, with the MDA and Jerry Lewis staunchly refusing to give the former poster children the credit of speaking from their experiences. In 2001, Lewis stated:
"Pity. You don't want to be pitied because you're a cripple in a wheelchair, stay in your house."
Just last year.

At an appearance in Chicago last November, audience protestors disrupted Lewis onstage. A fan of Lewis' who attended the event writes that after calling for security, Lewis ranted:
"All right, let me try to get through to the regular people." Applause. "For all of the 54 years that I've raised over $2 billion for children that needed it" -- applause, cheers -- "only in Chicago does this happen." He referred to the protestors "sitting in the chairs that I provided, but they want me to stop the telethon because I make them look pitiful. What is more pitiful than this?"
In the comments to that blog post (along with some support for the protestors) are these responses, typical of what you might find anywhere this dispute is discussed:
"I don't believe Jerry Lewis would go to such lengths to raise money for research if he truly had a disdainful attitude for the disabled. I think his intent is one out of goodness and caring, despite perhaps a lack of personal insight into actually living as a disabled person. I agree that more could be done to ensure more accessability for those that still have the ability to remain independent (ramps, parking, etc.), but money also needs to be raised so that future generations won't needlessly remain at a disadvantage, and nothing brings in donors like pity."
"You guys are making a mountain out of a molehill. So what if he said they are half a person. He did say the have the heart and brains of a whole person. I hate to break it to you, but it is true - physically.... I guess you want Jerry Lewis to be a little more Politically Correct? I can't believe you attack him just because he doesn't do it the way YOU think is the right way. Get a life. I bet you would bite someones head off if they opened the door for you wouldn't you? You would yell 'I don't need your pity!', when all they would be doing was helping someone in need."
"It's sad that those poor unfortunate persons with disabilities hate the man who tries to help them. True, he's made mistakes. True, he can be an ass at times. True, he's the only person in the world who is NOT perfect. lol It must be hard to be spiritually disabled and bitter on top of being physically disabled. I have a wheelchair-bound son-in-law. He hasn't let his disability turn him into a hateful ingrate. I pity you poor souls."
and (italics on this one are mine)
"These protesters should be ashamed of themselves! While some of Jerry's comments could certainly be construed as insensitive, at least he tries to help people. And I don't mean he helps people with M.D., I mean gets out and contributes in some way to trying to make life better for ANY of his fellow human beings. So many people today do NOTHING charitable, NOTHING to help ANYONE. However misguided or naive his attempts to put himself in the place of someone with M.D., he HAS spent over 40 years working to help people....

"If you don't want pity, don't be in a wheelchair.
I will always pity people who cannot run and jump like I can, who can't play frisbee or hike or ride a motorcycle like I can. I'm sorry if this compassion is truly a character flaw of mine, but I will always feel pity for those I perceive as having less than me, whether they are crippled, poor, or just mentally incompetent. This compassion and sympathy is what drives people to do things like, I dunno, make transportation wheelchair accessible and work to unsure that the disabled have the same employment opportunities as the rest of us.

"Perhaps we should just drop that pity and say "Screw you, you'll just have to figure out a way to get that wheelchair up the stairs. It's your problem, not mine."

"If you keep pushing people away because you can't agree with everything they say or how they do things, don't be surprised when people stop working to raise more than $100,000,000 a YEAR to help people in your situation.

"But rest assured, the people who would fight Jerry Lewis because they don't like they WAY he works to raise so much money for a charity get no pity from me. They deserve only my disgust."
Equating pity with compassion, the choice becomes either to be looked down upon as a lesser being or to be ignored completely. The pitiful people in wheelchairs are cast as receivers of help who must simply sit and let others help them, if they're nice and deserving. The idea of empowerment and access to participate in one's own well-being isn't recognized as an option.

Back to the conundrum.

So, much like the Hooters question, we have a group of people who may benefit from funding for research and assistance programs offered by an organization -- plus a famous spokesperson -- that have a long history of not treating these people (and their larger identity group) with respect. If you have a problem with the idea of "respect" here, think of "disrespect" as objectification.

Next I'll explain why I believe the answer to this question:
Can the Muscular Dystrophy Association Telethon and Jerry Lewis support people with muscular dystrophy without being perceived as paternalistic, pitying, and demeaning of disabled people?
is no -- not with the organization as it is, and never for Jerry Lewis. He's the Hooters of disabled people and Coturnix's distinction between the symbol and the reality is flawed.

I should reveal at this point that I apparently have an extremely rare disease that falls under the umbrella of dystrophies the MDA serves. And I've received some funding from them as a child and sought medical advice from their clinics in Minneapolis, Chicago and Phoenix in the past. I was never a poster child, but I'm just like Jerry's Orphans in these details.

Crossposted at The Gimp Parade