Another child with autism murdered

This is a photo of 3-year-old Marcus Fiesel, who was in foster care when he was locked in a closet without food or water for a weekend. His foster parents, who received a grand each month for his care, left home for the weekend to attend some sort of reunion. Arriving home to find Marcus dead, the foster father burned his body and hid it. Then they lied to officials and the public, claiming Marcus had wandered off on a trip to a park when his foster mother had fainted.

He's the third child with autism to be killed this summer in the United States.

Full story here. And commentary about how the news article was written by Whose Planet is it Anyway? here.

Remembering a hero

"Society is nothing more than what you do and say every day. When you speak, society speaks. When you change, society changes."

Bush, Sr., said, "He was a courageous, good man." Clinton said, "The contributions he made to our lives and the life of this nation will thunder on long after he is gone." Bob Dole called him "a pioneer in the disability field who never tired working to improve the lives of those with severe disabilities." Tom Harkin said he was "the Abraham Lincoln of the disability community." And Ed Kennedy said, "He was one of our country’s greatest warriors in the fight for civil rights for people with disabilities."

If he were alive today, Justin Dart, Jr. would turn 76 and he'd probably be remembering the anniversary of Katrina by speaking publically somewhere on how disabled people were disproportionately the victims of the government's lack of planning and slow response. Or he'd be speaking about the thousands of innocent civilian casualties in Iraq and Lebanon. Or he'd be campaigning from state to state for some political candidate who supports universal health care as a national priority.

Dart died in June of 2002, but he's was a disability rights leader, a father of the ADA, and a rolemodel for anyone wanting to change the world. I won't repeat his life history when others have written so well about it here and here. But I will include some inspiring excerpts.

New Mobility reported Dart's recollections of the lifechanging 1966 visit to a Saigon, Vietnam "institution" for children with polio, the virus that also left him using a wheelchair from age 18:

"The floor of the whole place was covered with children ages 4 to 10, with bloated stomachs and matchstick limbs," he recalls. "They were starving to death and lying in their own urine and feces, covered with flies. A little girl reached up to me and looked into my eyes. I automatically took her hand and my photographer took pictures. She had the most serene look I have ever seen--and it penetrated to the deepest part of my consciousness. I thought, here is a person almost dead, and she knows it. She's reaching out for God and has found a counterfeit saint doing a photo op. I was engulfed by the devastating perception that I have met real evil, and I am a part of it. The way I'm living and dealing with disability is killing this little girl. I'm going to go to my hotel, drink Johnnie Walker, eat a steak, and this picture is going to be in some magazine. I told [my fiancée] Yoshiko, 'We cannot go on as we have been. Our lives have got to mean something. We have got to get into this fight and stop this evil.' "

A lifelong Republican serving in various government positions under Reagan and Bush, Sr., Dart abandoned the party in 1994 when it pushed to amend or repeal the ADA and IDEA (Individuals with Disabilities Education Act). In 1996, he publicly campaigned for Clinton, against fellow Texan Bush, Jr., the son of the man he sat next to as the ADA was signed into law. He spoke at the DNC and visited all 50 states before the election, speaking for disability issues and supporting Clinton.

His health failed in 1997 and he worked from home after that, but even in his last days he worked to empower disabled people, sending out this last statement:

"The days of dying carry a special responsibility. There is a great potential to communicate values in a uniquely powerful way—the person who dies demonstrating for civil rights. Let my final actions thunder of love, solidarity, protest—of empowerment.

"I adamantly protest the richest culture in the history of the world, a culture which has the obvious potential to create a golden age of science and democracy dedicated to maximizing the quality of life of every person, but which still squanders the majority of its human and physical capital on modern versions of primitive symbols of power and prestige. I adamantly protest the richest culture in the history of the world which still incarcerates millions of humans with and without disabilities in barbaric institutions, backrooms and worse, windowless cells of oppressive perceptions, for the lack of the most elementary empowerment supports.

"I call for solidarity among all who love justice , all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all. I do so love all the patriots of this and every nation who have fought and sacrificed to bring us to the threshold of this beautiful human dream. I do so love America the beautiful and our wild, creative, beautiful people. I do so love you, my beautiful colleagues in the disability and civil rights movement."

Unsurprisingly, his trademark boots and cowboy hat still provide inspiration and empowerment at disability rights events.

Movie review: The Station Agent

In The Station Agent, Finbar McBride, a dwarf, inherits a rural New Jersey train depot when his only friend dies. He goes to live there and despite wanting to be left alone he has repeated encounters with a few interesting local people. I don't know why I missed hearing about this film when it was released in 2003 (there was even some Oscar buzz), but my newest imaginary boyfriend has been waiting for me all this time. Actually, the whole cast is wonderful. Everyone is funny and fascinating in a quietly hilarious way.

"Dwarf" was the term used in the film, with "midget" once quietly denied. "Little person" never came up, so I'll take my language cues from that unless I hear otherwise. Not that dwarfness (dwarfism?) was exactly the point of the story.

Fin's appearance as a dwarf is quietly present all through the film -- especially whenever he goes out in public -- but it is never presented as an impairment or the source of any crude jokes (visual or otherwise) where he's too short to do something. He's a capable, independent man others seem to be drawn to. His dwarfism is a disability only in how other people see him, and possibly in how a lifetime of this has shaped his character.

In the UK, "disability" is the term those familiar with disability politics use to distinguish societal actions of prejudice and discrimination from the physical or mental conditions -- "impairments" -- that may or may not be actually present. While the ADA attempted to incorporate this idea into American civil rights by, for example, including discrimination against people believed to have AIDS as well as people who actually do, this distinction is not well-recognized anywhere. But Fin is a great presentation of how society disables an individual even when impairments are not apparent by setting them apart with stares and the behavior of strangers.

Peter Dinklage, who plays Fin, has talked about the effect this treatment can have:

Unfortunately, a lot of kids' curiosity is squelched by their parents. Adults don't want to embarrass somebody else, but that perpetuates itself, and it can lead to shutting out anyone who's different than you. Obviously we all do have these societal behaviors that we have to abide by. But, I talk to some people who just don't want to meet my eyes. They think looking at me is rude, because they were brought up not to point or stare or whatever.

Fin's stoic loneliness matches that of the other characters and presents an interesting collage of the many ways people become socially alienated from the world. Disability as a kind of social alienation is only one example. The way Fin and the other misfits he meets form a bond is despite their separateness is the quiet beauty of the film.

Seriously, this movie makes my top ten favorites, and not just because it's probably the first ever well-developed dwarf character on film.

Johnnie Lacy

Through the many oral histories taken to document the disability rights and independent living movement, UC Berkeley offers a black woman's perspective on disability. Johnnie Lacy caught the polio virus in 1957 when she was 19 and studying nursing in college. After over forty years using a wheelchair and working at community development for poor, minority, and disabled populations, Lacy has insight into each aspect of her identity.

The transcript of David Landes' 1998 interview with Lacy runs over 130 pages, but here are a couple longish snips that I found interesting:

Landes: It sounds like you identified primarily by your poverty and as an African-American woman.

Lacy: I think it's a little bit more than that, though. And that is, that's a dilemma that I faced over the years in terms of the way other people perceived me and the way I react to that perception and the fact that I've kind of gone back and forth in terms of my own identification. For example, now I identify much more with my disability than with my poverty or my race. It's mainly out of reaction to other people's perception of me.

One of the things that I've learned is that I cannot allow myself to fall into the trap of being identified by others, that I have to have a sense of my own personal identity. And that sense is very much tied into who I am as a woman of color and as a disabled person, and I try not to distinguish between the three identities anymore. It's almost like what's happening now with multi-racial youth who in the sixties were described as having an identity problem when they became frustrated and angry at other people's perception of who they were.

In the sixties, for example, if you were mixed with black, no matter what other race you were, you were identified and perceived as black. And I think that is pretty much the same kind of perceptions that I was dealing with in terms of my disability and my ability to identify--if other people didn't see it as a part of me, then I denied in some ways that it was also a part of me because it was very important that I relate to my peers. And so I over the years have become much more--I don't want to use the word "adept" because that's not really--self-identified and much more persistent about my own perceptions than I have been about what other people's perceptions are.

and

Landes: So how do you see the relationship of the disability rights movement to other movements for social justice, for example, the struggle against racism and sexism?

Lacy: Movements are pretty much the same.

Landes: What connections to do you see among the three?

Lacy: That's the problem, I think, is that most movements don't take the time to recognize their similarities. As a matter of fact, they see their life blood as emphasizing the differences. I've been looking at some interesting kinds of features about Martin Luther King in the last few weeks, and I heard one person say that the reason that Martin Luther King was killed was because he recognized the similarities, and his efforts to pull together the anti-war movement and the civil rights movement created a kind of fear in government that made them feel the need to eradicate Martin Luther King.

The quote that I think about a lot in regards to this is his comment that "injustice anywhere means injustice everywhere." When you think about that, the realization of what impact that might have if it were pulled together as a concrete movement, where all of the have-nots come together to try to create a difference in their lives.

Landes: Are you hopeful about the possibilities of a more united movement for social justice that would include disability rights on the agenda, along with the rights of people of color and women?

Lacy: Yes, I'm hopeful. I guess maybe the reason I can be hopeful is out of my own experience, not recognizing the commonalities between civil rights and disability rights, although I think early leaders certainly espoused these commonalities. It was always seen by me and a bunch of other blacks as a way of "dissing" these groups, you know, saying they're copying off of our civil rights movement. They're not really interested in civil rights as much as they are in drawing the comparison that will allow them to make their movements stronger.

And I've heard these comments many, many, many times. I heard it around the women's movement; I heard it around the Raza movement; and then the disability movement. That somehow or other, African Americans see civil rights as being the personal property of African Americans and have yet to really, really stop and think about the similarities. But I think if Martin Luther King could see it and--not placing myself in the same vein as Martin Luther King--but if I can see it, that gives me hope that at some point others will.

There's a brief video clip, as well.

Things that crack me up, #7

Special accommodations.

Via Independence Today.

Saturday Slumgullion #9

• From It's my life... Don't you forget, a Deaf blogger argues that beating a deaf citizen is a hate crime if you are ignorant of his deafness, yet assault him because of behavior common to deaf people.


• Mission & Justice reports on the current health and disability problems in Vietnam due to Agent Orange use there by the United States in the 1970s.


• The blog of the AFL-CIO reports that seniors on Medicare Part D who have hit the doughnut hole are going broke.


• A woman with cerebral palsy who was fired from Veterans Affairs claims they failed to provide accommodations they needed, then sacked her when she desperately tried to find some other way to do her job.


• View Travel with a Disability photos -- or contribute your own -- at Flickr, courtesy of Rolling Rains.


• Dianrez writes thoughtfully about growing up deaf in a hearing culture. Great blog.


• In audio, Dr. Dave Martin of Auburn University's Department of Rehabilitation and Special Education discusses how language contributes to stereotyping of disabled folks.


• In South Africa, a new comic book developed by a gay and lesbian organization illustrates deaf rights and provides information on HIV/AIDS and sexuality. Via Deaf in the City.

• Carnival of feminists XXI.

• Patient consumer parade #6.

• Grand rounds.

• Change of shift, a nursing carnival.

Pre-implantation screening debate

I'm not done reading Defiant Birth: Women Who Resist Medical Eugenics yet, but I'm following the debate on a Business Week article by Elizabeth Schiltz on two blogs: Shiny Ideas and Ballastexistenz. Schiltz is one of the women whose personal stories make up the heart of Defiant Birth, so it's interesting to see how people react to the BW article which gives less detail about her personal life but still questions the unexamined use of the technology that now screens for thousands of genetic variations in pre-implanted embryos and (as yet, some fewer variations) in fetuses women carry.

Here's what I have learned about Schiltz from the book:

She's been pro-life all her life. Her oldest brother has Down syndrome and is a successful part of the workforce and his community. And she grew up in Germany literally in the shadow of one of the state hospitals where people exactly like her brother were killed by the Nazis a mere decade before his birth.

When she learned the fetus she carried had the marker for Trisomy 21 and submitted to further tests, she observed:

"The medical professionals I was dealing with through all those tests were not trying to find information to help me protect the health of my baby. Unlike the tests for anemia or HIV, there is little that can be done about the conditions that these tests were attempting to identify. These tests were offered for the purpose of bestowing upon me a special societal privilege to choose to abort my baby."

Schiltz's pro-life stance clearly effects her word choice and perspective about a "privilege" to choose abortion, but the thread of disability rights awareness that also runs through her narrative is honestly earned through experiences with her brother. Of the direct and intrusive questions she received while pregnant, she says:

"I was comfortable defending my position that I didn't believe in abortion, that I didn't think I did have any choice in the matter; I was still in familiar, pro-life territory. But I left that familiar territory the moment Petey was born, and I found, to my great surprise, that society still kept asking that question: Why did you have that baby? I have had people react with marked surprise when they hear that I knew Petey would have Down syndrome before he was born."

She then examines the moral judgments society connects to the availability of screening technology:

"Bob Edwards, the scientist who created Great Britain's first in vitro fertilization baby, recently... [said]: 'Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.' "

There's the HMO that initially denied medical coverage of a baby born with cystic fibrosis because the woman knew beforehand of the child's condition. There are the increasing number of "wrongful life" suits where parents sue medical professionals for failing to diagnose flaws in the babies they've given birth to. There are the doctors who do not tell parents of babies born with heart defects sometimes accompanying Downs syndrome that with surgery it can typically be fixed, but instead inform the parents that surgery and it's risks are not worthwhile. There's the cost-benefit analyses being applied to specific fetuses to determine the worth of their lives.

Both Schiltz's essay and the lengthy introduction of Defiant Birth (authored by Melinda Tankard Reist) appear to be scrupulously documented with endnotes. And while I haven't read most of the other essays in the book and can't tell what percentage of the women speak from a pro-life stance, the introduction and Schiltz's piece both present the disability rights perspective against eugenics in organized and persuasive logic. I'll report on the rest of the book when I've finished it all, but I'm already finding it to be an interesting mix of abortion politics, feminism and disability rights.

Sitemeter says...

Google search question leading here: Can you find love after being "hit by a car"?

Answer: I would think so.

Snark: If you have green eyes, should you go to college?

Two things I learned today

First, some muslims object to the inpurity of dogs, thus making the presence of guide dogs and the people who use them a public problem. The specific story told here about a muslim woman in the UK causing a blind man to switch schools because the college sided with her about the dog may or may not be true. But it's apparently true that some muslims would need to discriminate against guide dogs and their owners in order to serve their beliefs. Religion is so silly, whatever the flavor it comes in.

Second, non-palestinian disabled folks not traveling in Israel really have comparatively little to complain about. Not that our complaints aren't valid, but they cannot be compared to the frustrations of an American woman and her paralyzed wheelchair-using palestinian fiance trying to cross from Gaza into Jordan because she was required to leave to renew her visa.

The least of their problems was being given this chair to sit in:

Meme stands for me me me me ME!

Marl Siegel of The 19th Floor tagged me earlier tonight with a meme and I'm just big enough of a dork to respond immediately.

Why do you blog?

I wrote about this recently. Basically, I'm a narcissistic know-it-all and I blog so that I can shut up about my pet ideas elsewhere and not become tiresome to my friends and family. I have the vain sense I might occasionally tell people something true that they might not otherwise know. I'm more articulate in text than in person, generally. 'Since my recent medical crisis and the loss of quite a bit of daily privacy, I find this blog is something that still feels "all mine" and that's important to me right now. And finally, I meet interesting people this way.

How long have you been blogging?

Irregularly since June 16, 2004.

Self-portrait.

Drawn last March.



Why do readers read your blog?

Probably the same reason I read other people's blogs: I'm interested in what that person thinks. And perhaps other disabled folks find the same joy that I do in hearing other voices on topics noone else talks or even knows about.

What was the last search phrase someone used to get to your site?

"white cane vs guide dog"

Usually it's either some variation of "disability porn," or the much more flattering search for information on "Harriet McBryde Johnson."

Which of your entries unjustly gets too little attention?

"Disabled man's body digitally blurred for TV":

Primetime blurred the entire image of the man in his wheelchair. Not for anonymity, but because he's a "pale shadow" of his former self.

The implications of this event really disturb and fascinate me. I'd welcome a discussion about other possible examples or solutions and if this is a new trend or a new variation on the old themes of shame and hiding the gimp from sight.

Your current favorite blog:

Feministe for discussion, Ragged Edge for the last disability news, and Wheelchair Dancer for challenging me to think more critically.

What blog did you read most recently?

Mexico Medical Student, because I love me a carnival and Grand Rounds is related to disability issues, but rarely covers them from the disability perspective, so it's the flipside of all the disability bloggers I read. Sort of.

Which feeds do you subscribe to?

Eh?

What four blogs are you tagging with this meme, and why?

Moving Right Along, Sinister Girl, Loose Chicks Sink Ships, and Life in a Suitcase. Because I haven't added them to my blogroll yet, but they belong there.

Little things

So I'm sipping a chocolate malt from the local county fair and pondering the little adjustments I've had to make to my daily life in the past half year. The big adjustments are something different and for whatever reasons I don't think about them too much -- ambivalence as self-defense, perhaps. One big thing that has come about gradually over several years, but is quite apparent lately because there are hired nurses assisting in the task, is getting help with my daily hygiene.

The little things about this daily assistance are specifics of how I wash my body, what time of day I first brush my teeth (before tea or after), exactly how I part my hair or wash my face, what clothes I choose to wear, what order I put them on in, and -- one that continually surprises me -- precisely how I want to wear my underwear. I have preferences for all these little things, it turns out, and I suppose everyone does but doesn't need to contemplate them much when they do them quickly by themselves. Bring another person into the situation and it becomes a negotiation or subtle power issue or small expression of individuality that is challenged in some small way.

About my specific preferences, I'll just note that I insist on having the last word on my underpants. I choose how high they sit on my hips, and how, in relationship to my buttcrack, they will absolutely not behave like a thong -- a determination that I believe only the wearer is qualified to pass judgment on. I do the last adjustments, and my nurses have varying reactions to this. It's one of the few situations where I'm absolutely predictable in how I take control and won't let them help.

It's a minor daily event, so much so that I've considered writing a brief memo to my nurses entitled "The Mysteries of my Panties and Their Appropriate Placement" so they won't feel they're inadequate in that department of my care. Or they'll at least learn they're all in the same boat and not doing anything wrong themselves. Then, I decide I won't write the memo because it should be self-evident. My ass, my choice, after all.

But it's not as simple of a relationship as that, since delegating out any sort of task means giving up some degree of autonomy about exactly how it is done. Right? The big things that have changed for me bring about dozens of these little decisions each day -- capitulation versus keeping control.

It's not all drama and loss. It's entertaining to see how someone else applies deoderant to my pits. And I've found that waiting to see which combination of my clothes I'll be dressed in each day is simply a different kind of fun from choosing them myself. I still choose them whenever I wish but mostly prefer the surprises for now.

The fact that I can finetune the position of my underpants where some quadriplegics can't is not lost on me, though some of those people can't feel how they're positioned anyway. But how much are these little expressions of control or preference part of an individual's being? How important are they to the self? The many little things I let others do for me -- many happily relinquished, by the way -- don't consist of who I am. But at minimum they're probably an expression of self culturally. Not a lifestyle choice exactly, but part of a lifestyle and the culture of disability.

I don't have the answers to how these little changes impact the self. And I know some people will say I'm thinking way too hard about this, but what else is there to do when having these tasks performed for my body by somebody else?

Saturday Slumgullion #8

• Massachusetts passes "equal choice" home care legislation with expectations it will save $154 million over the next five years. "The new law would allow greater flexibility to shift part of that Medicaid money to home care for personal care attendants, private duty nurses, adult day care, and medical transportation." Via Ragged Edge


• Disabled people "left behind" during Hurricane Katrina, The New Standard reports, and nationwide emergency preparedness mostly fail to take into account the special concerns of disabled people. One example, the New Orleans disability-rights organization Advocacy Center is suing FEMA with claims that even five months after Katrina the agency had still not provided accessible trailers to disabled refugees. Via Rolling Rains


• A review from 2001 captures the reasons for the filmfest success of the documentary How's Your News? which I reviewed recently here. From IndieWire:

At first, "How's Your News?" comes off as a crass joke, tasteless and manipulative. But this time, the bad joke starts to crack itself open. As we watch these reporters repeatedly subjected to humiliation, but retaining their mission and good humor, we begin to wonder: is it us, the audience, who is imposing our authority to judge them? "''How's Your News?' goes against the grain of how disabled people have ever been portrayed in the movies," Pierson argues. "We're not told to feel sorry, or happy, for them. They had a great time. They put themselves out there. The film doesn't take a point of view for or against them, and that's what critics might react against."

The initial discomfort some might feel at watching "How's Your News?", Pierson continues, is something you can't feel in a theater. "At home, in isolation," he admits, "it can be a different experience. You have to examine yourself and wonder how to react. In a theater, within a few minutes, you get it along with everyone else."

• Criticisms of Jerry Lewis and the MDA notwithstanding, the current issue of Quest, the magazine of the MDA, carries an interesting piece on "Multiple Minorities" and what happens when a person is both disabled and nonwhite or Jewish or gay.
  


• So brand spanking new it's not yet fully online, Independent Today is a new disability webzine worth keeping an eye on.
  


• Here's a review of Brothers of the Head, a movie about conjoined twins who form a punk band. Looks promising, though I won't see it until it hits Netflix.
  


• And my online friend Piny has written eloquently about how pity is not just for disabled folks, but is also a theme of charity done in/for Africa (yes, pity for a continent of people) and is just as troublesome and repugnant in that form. The comments are great too.
  

Children in nursing homes

Too bored with myself to ponder my opinions today, so here's an excerpt from an editorial piece in last Saturday's The Oregonian:

Oregon has a small but growing population of children who are severely disabled, as The Oregonian's Don Colburn reported this week. Children who get in bad accidents, or who are born prematurely or with birth defects, are more likely to survive today than in the past because of medical advances.

This improved survival rate is a blessing. However, parents of severely disabled children often feel unmoored and alone once they leave the hospital and discover their limits: They're sent home with a child who needs round-the-clock nursing care, who may never get better, and whose needs may not be covered by private insurance....

Then the parents turn to the government for help and discover certain perversions in the law. For example, a child living in a nursing home is automatically eligible for Medicaid, the federal-state health insurance plan for low-income people. A child living at home, however, can't get help from Medicaid unless the family qualifies as poor enough.

This creates several bad choices for parents: They can deliberately impoverish themselves to qualify for Medicaid. They can go broke over time, draining their life savings and shortchanging their other children to pay for a patchwork of in-home care. Or they can try to send their disabled child to a nursing home -- even if the child may not require that level of institutional care.

"It's an agonizing decision, and it's an ongoing one," said May Lee Fay, administrator for the Office of Developmental Disability Services in the Department of Human Services. "There's not a lot of good choices in Oregon for these families."

Oregon can begin to address this problem in two ways. First, state officials can get a federal waiver that would allow all severely disabled children living at home to get Medicaid coverage, regardless of family income. This waiver application process is already under way, but its approval is uncertain.

Second, Oregon lawmakers can keep these children in mind during the next legislative session, while they fund programs for respite care and other at-home assistance. These programs help keep families intact -- and they keep children out of nursing homes, foster care and other costly places of last resort.

It's not only children who shouldn't be institutionalized for financial reasons.

Against Health Conference

I would so be at this if it was easy for me to get there:

Against Health: Resisting the Invisible Morality

This international interdisciplinary conference will take place at the Rackham Graduate School Building, 915 E. Washington Street, on the University of Michigan campus on October 12–13, 2006. The conference will call on the expertise of a vast array of disciplines to examine the ways in which the category of “health,” the norms associated with “health,” and the social functioning of those norms are, in some instances, at odds with human well being. Of particular interest are the ways that certain appeals to health risk authorizing, justifying, and immunizing from possible criticism an array of practices and power relations that would otherwise be vulnerable to challenge.

We aim to explore, thus, how politics, ideologies about race, gender, and class, social norms and mores, and economic structures all work to define “health” in ways that benefit certain groups of people while excluding others.

The two-day format will encourage the broadest possible exchange among participants and presenters. Day One features a panel of four experts (Dorothy Roberts, Kirkland & Ellis Professor of Law at Northwestern Law School; Kathleen LeBesco, Associate professor and Chair of Communication Arts at Marymount Manhattan College and author of Revolting Bodies: The Struggle to Redefine Fat Identity; Susan Kippax, head of the National Center in HIV Social Research at the University of New South Wales; and Carl Elliott, Professor of Bioethics at the University of Minnesota). Each panelist will speak for roughly twenty minutes at a large communal panel in the morning, and then lead an interactive workshop in the afternoon.

Other Day One highlights include an opening address by the Cornell literary scholar Richard Klein and a lunchtime keynote by the former U.S. Surgeon General M. Joycelyn Elders.

Highlights of Day Two include a series of interactive workshops (featuring, thus far, Rebecca Herzig [Bates College], Roddey Reid [UCSD], Sarah Jain [Stanford], Brad Lewis [NYU], Kane Race [UNSW], Petra Kuppers [U-M], and Nicholas King [Case Western]), a keynote address by Susan Love (Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA), and a raucous closing party.

This conference is organized through the University of Michigan’s Program in Culture, Health, and Medicine, which is housed in the U-M Institute for Research on Women and Gender.

Disability scholars Lennard Davis and Petra Kuppers are included in the schedule, so this is one conference involving bioethics and health where the interests of disabled persons won't go unheard. Also, day two ends with a "raucous closing party" which is always promising.

All of them?

It's amazing where Sitemeter can lead you. Here are some astounding, unbelievable, heart-breaking statistics (check out the one in italics) from New International magazine, Issue 384 from last November:

Women and girls
• School attendance rates for girls with disabilities are even lower than those for boys with disabilities.2

• Women with disabilities are two to three times more likely to suffer physical and sexual abuse than women without disabilities.2

• A survey in India’s Orissa state found 100% of disabled women and girls were beaten at home, 25% of women with intellectual impairments had been raped and 6% of disabled women had been forcibly sterilized.1

• 20 million women a year are disabled as a consequence of pregnancy and childbirth.1 The overwhelming majority are likely be in the Global South, as only 1% of annual maternal deaths are recorded in rich countries.7

• Over 100 million girls and women in Africa have experienced the disabling consequences of female genital mutilation.2

Orissa is on India's east coast along the Bay of Bengal. Women have other problems there as well, of course. There's lots of poverty, but it's a very beautiful part of the world.

Guidelines from Homeland Security

Extensive information for travelers with disabilities and medical conditions, from the U.S. Transportation Security Administration.

Quote

Gustavo wore an artificial eye as a result of an accident when he was a young boy. This did not lessen his attractiveness to me. I think perhaps the contrary. Certainly there was no company I preferred to his....

Then in the autumn of [my seventeenth] year I ... suffered the accident to my hand of which I have spoken.

To a boy this would have been an event of consequence. To a girl it was a devastation. I would not be seen in public. I even imagined I saw a change in my father towards me. That he could not help but view me as something disfigured. I thought it would now be assumed that I could not make a good marriage and perhap it was so assumed. There was no longer even a finger on which to place the ring. I was treated with great delicacy. Perhaps like a person returned home from an institution. I wished with all my heart that I'd been born among the poor where such things are so much more readily accepted. In this condition I awaited old age and death....

Gustavo treated me no differently than before. He told me how he had lost his eye and of the cruelty of the children at his school and he told me things he had never told anyone... because he said that I would understand....

He said that those who have endured some misfortune will always be set apart but that it is just that misfortune which is their gift and which is their strength and that they must make their way back into the common enterprise of man for without they do so it cannot go forward and they themselves will wither in bitterness....

That night I thought long and not without despair about what must become of me. I wanted very much to be a person of value and I had to ask myself how this could be possible if there were not something like a soul or like a spirit that is in the life of a person and which could endure any misfortune or disfigurement and yet be no less for it. If one were to be a person of value that value could not be a condition subject to the hazards of fortune. It had to be a quality that could not change. No matter what.

Long before morning I knew that what I was seeking to discover was a thing I'd always known. That all courage was a form of constancy. That it was always himself that a coward abandoned first. After this all other betrayals came easily.

I knew that courage came with less struggle for some than for others but I believed that anyone who desired it could have it. That the desire was the thing itself. The thing itself. I could think of nothing else of which that was true.

All The Pretty Horses by Cormac McCarthy, pp. 233-235

Public perceptions, equipment and environment

Stan at Stan's Blog writes about his experiences as a nondisabled person who temporarily needed crutches for a broken leg. He noticed distinct differences in how he was perceived and treated depending on the type of crutches he used, which goes along with what I was describing (and commenters confirmed) about differing public reactions to specific bodily presentations of disability. I wrote:

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact.

Stan spent about two months on crutches, beginning with the wooden armpit-killers, switching to wrist-cuff crutches, then back to the wooden ones. He found public response to be very clear and discerning:

Everywhere I went people saw the crutches and were unbelievably willing to help me by opening doors, making chairs ready, carrying my briefcase and so forth. One day at church an elderly lady who had been experiencing hip problems told me that she had a pair of the type of crutches that hook onto your wrists and that she would loan to me if I wanted to use them. She said her wrist crutches would save me the pain from the under-the-arm type of crutches that I was using at the time. I jumped on that idea and immediately put them to use.

The very next day I began to experience something I was totally NOT expecting. People shunned me! They wouldn't make eye contact, they wouldn't open any door, pull out a chair - nothing. I immediately began to feel isolated. I went to eat at a restaurant in Dallas - same response, until I sat down and hid the wrist type crutches under the table, then everything was fine. I pulled them back out to leave - same type of distancing response - from everyone! It dawned on me what had been occurring. These crutches I was using were the same kind that permanently disabled people use - people with polio and other seriously degenerative diseases. Whenever people saw the wrist crutches they thought that I was disabled - permanently, and evidently didn't know what to do with that or intentionally shunned me. As soon as I hid them from sight - back to normal. I realized that what I was experiencing is what millions of partially and fully disabled people all around us go through every single day of their lives.

I went straight home, put the wrist crutches in the closet, pulled out the old wooden crutches, pain and all, and went back to work the next day. Guess what - here came the open doors again and all the other percs I was getting from having a broken leg. I guess people saw the wooden crutches as a temporary ailment and the other type of crutch as permanent and their responses to me sprang from their perceptions.

Environment matters too, I think. I've been at parties where everyone was milling about and no one would make eye contact with me to even nod, say "hello" and move on. Later, when the same party had evolved into clusters of people sitting down to talk, I was included in conversations much more readily.

Was it that everyone was more comfortable with the party atmosphere after a couple hours? Were they relaxed and less self-conscious about talking to me (or anyone) after a few drinks? Or was it because sitting at my eye level, I was viewed as more of an equal? All of the above, I think. But being viewed at eye level did make a difference, I believe.

Bush and disabled folks

From the New Yorker:

Who is Peter Wallsten?
(a) the partially blind reporter whom George W. Bush mocked ("Are you going to ask that question with shades on?") for not removing his sunglasses while addressing the President
(b) The wheelchair-using senior citizen whom George W. Bush mocked ("You look mighty comfortable") for not standing in the presence of the President
(c) The CIA employee who, after delivering the "Bin Laden Determined to Strike in U.S." briefing, was told by George W. Bush, "All right, you've covered your ass now."
(d) The Iraq-war amputee with whom George W. Bush tried to bond by telling him about a scratch he got during "combat with a cedar" while clearing brush.

As you can possibly see, I have an injury myself — not here at the hospital, but in combat with a cedar. I eventually won. The cedar gave me a little scratch. As a matter of fact, the Colonel asked if I needed first aid when she first saw me. I was able to avoid any major surgical operations here, but thanks for your compassion, Colonel.
-- George W. Bush, after visiting with wounded veterans from the Amputee Care Center of Brooke Army Medical Center, San Antonio, Texas, Jan. 1, 2006

All of the possible answers are things that actually happened, but in this case "Peter Wallsten" is (a).

Crossposted at Echidne of the Snakes
Check there for comments

Until every single penny is gone

Update: Liz deleted her blog Granny Gets a Vibrator, so I believe the dead links to it below represent lost writings, but her new blog is As The Tumor Turns. For those who don't understand the now-missing reference: Brenda was the tumor's name, and she appears to have been beaten into submission/remission.

The fantastic Liz at Granny Gets a Vibrator has been blogging and slogging her way through a recent cancer diagnosis and all the medical, financial and existential fears that travel in it's tumor-swollen baggage. (A quick and violent death to Brenda!) I can't say enough good things about her writing and I wish her all the strength and luck she needs for this week and until this is over.

The medical worries are bad enough, but I keep thinking back to Liz's recent rant about the financial concerns a medical crisis creates and adding her rants to the ones I work through daily in my head. (I've written just a little about them here.) Here's Liz:

The system at the "charity" hospital is a total disaster, a massive fuckup, a guaranteed death sentence. Not just for me, but for 4,000 poor uninsured people who desperately need health care every month. I'm slipping through the system's cracks: medically, there's no continuity, I never see the same person twice, no one can figure out what's going on, locate my records, or find out which doctor said what or why. And I'm slipping through the cracks financially: because I have a small amount of money left in my IRA, my "liquid assets" disqualify me from receiving free care, until every single penny I have is gone. Which at this rate could be in about three weeks....

And the struggle to figure out how to deal with the financial monstrosity. I deeply appreciate the Paypal offers, but you know, we're talking about maybe $60,000 a month? Probably more. Astronomical. Impossible. Ruinous.

I'm not going into this all detail out of self-pity, or to whine about how it's so unfair to me. This situation is not just about me. There are millions of people out there in the same sinking boat I'm in, with nowhere to turn. It's just unimaginably horrible. I sat there and watched several hundred such people suffer today, and most of them looked completely defeated, thoroughly resigned. The tired dead-eyed hopelessness in their faces still haunts me.

It is impossible and ruinous. The health care system in America is just broken. If Bush and the international gratitude his actions create don't kill us all, the health care crisis will destroy us economically as a country. And our independence one by one.

I was in hospital four months. Three different hospitals, actually. I'm unemployed now, but because I was insured as a baby before my impairments were evident or serious, and because I still ride on that insurance through my parents, who finance it, I have excellent insurance coverage.

Still. This hospital stay forced me to activate the full Medicare benefits I qualify for and apply for state aid for the disabled. I have no idea of the full cost of my illness and recovery, nevermind the current care I receive at home. The hospital bills exceed a half million, I know. But the paperwork goes round and round -- employment of the circulators probably costs half what I owe. Medicare and my insurance company send me reports, the hospitals send me totals of various things, then they all request the others pay their share, and they all send me updates on how that's working out. It usually isn't working out, so it's a self-correcting program where we go round again. I'm not sure anything has yet been paid.

There are the inevitable errors that slow this idiotic process down. At one point my medical supplier billed my insurance company, and the insurance company paid but inexplicably sent the check to some random trucking company with a slightly similar name. The trucking company cashed the check, which was a little over 20K. (Well, wouldn't you?) The supply company demanded the money they never got, the insurance company insisted they'd paid it. Someone demanded a cancelled check. Someone refused. It got kind of pissy.

There was mention of going to court, where, of course, I would get named as the delinquent defendant. I swear this is all true. Meanwhile, I'm not speaking because I'm a lazy ass vent user and, frankly, I want some alone time from all this attention and being able to legitimately claim I can't speak comes in quite handy sometimes. So, my father spent a week or two on hold. And because he has a talent for this, he eventually made someone see reason and they all grew up and fought this out without my needing to pay legal fees. I don't know if the supply company actually got paid or if they agreed to add that bill to the merry-go-round again.

There was discussion while I was in the rehab hospital about whether or not my parents would need to spend down their assets to nothing so that I could receive the continuing care I need at home. My retired parents who have had the luck and good sense to cover their own aging butts as best as any upper-middle class couple in this broken system can were told they might need to give up everything so their 37-year-old daughter could live with them and get daily care. That's a rockin' deal for them.

The details of why this needed to be considered involve how I almost ended up in a very scary nursing home. I'll write on that another day. A hospital social worker helped us navigate the system so that only I need to be poor. Currently I do live with my parents and have 24-hour nursing care because of the ventilator and the laws attaching to receiving aid at home.

In order to get funding for home care while using a vent, it has to be qualified nurses rather than just anyone trained as a personal assistant. Though, of course, my parents learned everything the nurses need to know for my daily care from the rehab hospital staff and they are allowed to help. Because this country has a nursing shortage, in fact, my parents were on duty half the hours of every week (84 hours shared between them, sometimes 48 at a stretch) for about a month before all my nurses were found and hired by the agency required to handle this for me. If I had enough family to be present round-the-clock without pay, no one would care they didn't have medical degrees. (More on that, too, another day.)

In order to keep the funding that provides this constant professional care, I have to have less than $3,000 in total assets to my name. Constantly. Forever. I get a disability benefit each month. I'm not allowed to pay my parents rent and in these first few months I haven't been out too much. So, ludicrous as it seems, it's been a challenge to maintain my total poverty. I can't invest. I pay for what I can around the house. And I do what is called a "spend down."

Many disabled do it or something similar. My college roommate used to get her personal attendant funds and college funding in cash so it wouldn't show in her financial records at the bank. And she was wicked generous with birthdays and Christmas because she couldn't use any cash to, you know, build a future for herself.

One nurse told me of a man she used to help who had his home nursing cancelled because he had too much in the bank. He called the home health agency back a day or two later, said he'd been on a spending spree and they could come back now. He was poor again.

If I didn't live with my parents, almost every cent of my disability benefit would go toward food and rent -- or maybe just rent. I would be among the poorest of the poor at $760/month, or more likely be in that nursing home with no autonomy.

Anyone who could get hit by a bus tomorrow and need a ventilator would face all of this. Or anyone who has a tumor. Or is a soldier in the war. Because the system is broken, we're all just that close to losing any hope of economic independence. Or life outside of an institution. Astronomical. Impossible. Ruinous. And a lurking threat.

Crossposted at Echidne of the Snakes
Check there for more comments.

The pity "conundrum," part two

Coturnix claims that the symbol and the reality of Hooters are different from one another, creating the possibility that the actual restaurants are not mysogynistic and demeaning to women. But the problem is that the Hooters symbol is not the logo or the costumes or the restaurants themselves, but the breasts of women. Objectifying women's bodies to create an environment for the dominant male heterosexual gaze, women's breasts themselves become the symbol for the restaurant. It was easy for the chain to establish this connection in a culture where women's bodies are symbolically colonized for the male sexual gaze everywhere you look. But detaching the symbol from the cultural meaning is more complicated then Coturnix suggests when women's breasts/bodies come to represent women themselves.

The telethon symbol.

Just as Hooters is one "genre" of women's objectified bodies serving as entertainment that includes strip clubs and The Rockettes, the MDA Telethon is one "genre" of how disabled people's bodies are culturally used to define normality, safety, and bodily superiority of the nondisabled. Beth Haller explains the cultural place of telethons and the effect of opposition to them:

Culturally, the disability activism against the telethon has real ramifications for the ideology surrounding disability in U.S. society. Marilynn Phillips* calls a telethon an "occasion of ideology," rather than an "occasion of social reality" in U.S. culture. Occasions of ideology invoke pity and charity in belief of a cure, whereas occasions of social reality summon feelings of resentment and confusion over the "abnormality" of people with disabilities. During occasions of ideology, discourse focuses on the "defect" of the person, and disabled persons are homogenized as one. Phillips says, "primarily, these are events which define culturally appropriate handicapped behavior (being a good cripple), and which serve to demonstrate predictable interactions between nondisabled and disabled persons."

With the MDA Telethon and the rhetoric Jerry Lewis insists on using to beg for money (and he does actually use the word "beg"), the symbol of the MDA and it's telethon is bodies in wheelchairs. Or, the wheelchair, if you like, though if a body uses a wheelchair the symbolism pushed by Lewis conflates the meaning of one with the other. Haller, on the body the MDA Telethon symbolizes (I've left her references in this excerpt intact):

Their bodies are seen as inferior in their physical functioning when compared with people who do not have muscular dystrophy. When the body becomes the focus of humanness, this inferiority of body means the people become inferior as social beings as well (Liachowitz). David Hevey explains how charities use bodies for the visual associations needed for awareness among the public:

The task for the (charity) agency is to find an image which gives the impairment and its effects a symbolic but social identity. Since the impairment has to be the site of disablement, it follows that the body of the person with an impairment will be constructed as both the essence and symbol of disablement. Their body becomes fragmented and refocuses on the major fragment--the impairment. The object of this first stage, then, is to place the symbol of the impairment into social orbit but labelled as the property or concern of the affiliated charity. (34)

With this in mind, people with muscular dystrophy are therefore constituted as inferior or subordinate to people without muscular dystrophy.

Lewis goes out of his way during the MDA Telethons to emphasize the difference between his nondisabled self and the disabled bodies he invites on the show. And they are bodies he invites, not individuals, as assured by the way he interacts with them. Haller's paper includes a fascinating analysis of the spatial structure of Lewis' interview with a disabled man during the 1992 Telethon. Here's a taste:

In an interview sequence between Lewis and Matt Schuman, a former poster child who works as a sports reporter for the Greeley (Colo.) Tribune, Lewis always stands. In the first shot of Lewis and Schuman together, Schuman's face is covered by the two lines of call-in numbers at the bottom of the television screen. The spatial difference exists because Schuman is seated in a wheelchair and Lewis, who is tall, is standing. This causes Schuman's presence in the shot to be negated because the call-in numbers cover his face part of the time and because only his head and shoulders are visible in the bottom left corner of the TV screen at other times. All attention is directed toward Lewis because he is standing. These spatial relations exist not just with Schuman but are repeated throughout the telethon whenever Jerry Lewis interacts with someone who uses a wheelchair. One way to diminish this superior-inferior special structure would have been to have an interview comer in which Lewis sits to talk to people who use wheelchairs. But instead Lewis stands throughout the days of the telethon.

Also:

Throughout the telethon, he hugs and caresses the children and adults with muscular dystrophy, all of whom he calls his "kids." When Schuman completes his short speech, Lewis rubs and pats the back of Schuman's head. It is not a "good job" touch from one adult to another, as a pat on the back or a shake of the hand might be. It is a parent patting the head of a child to indicate the child has pleased him. In reality, Schuman is a working adult who happens to have a physical disability.

Lewis infantilizes disabled adults he interviews, assuring the audience that bodies in wheelchairs are inferior, need pity and that the nondisabled should contribute money for research to avoid the gruesome fate themselves.

The persistent reality.

With Lewis insisting the objects of his charitable works either accept pity or "stay in your house," disabled people beginning to organize and fight for access to public buildings, transportation, employment, and general civil rights were responded to with sentiments like those to the blog post about protestors at an event of Lewis':

"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."

and

"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."

and

"It's sad that those poor unfortunate persons with disabilities hate the man who tries to help them."

and

"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."

Disabled protestors are repeatedly established as inferior, and disable people generally are told to keep their place and accept what charity they can get instead of the access they desire. It should be noted that people who argue that financial help for the disabled should come solely from private charities rather than government funding would lock disabled people into the pity rhetoric and out of a position where they're worthy of civil rights.

Finally, the conundrum, again.

For disability activists protesting the MDA Telethon and Jerry Lewis, the money raised is too high a price to be paid for personhood. The argument that money should be raised (and accepted by the disabled) by Lewis' methods because it's for a good cause -- a cure -- becomes meaningless when disabled bodies are so culturally devalued that life until the elusive cure locks them into the role of pitied victim instead of active member of society.

Of course, not all disabled people or people with muscular dystrophies agree with Jerry's Orphans and other Telethon protestors. Some are so focused on a cure that like Chris Reeve said in his early years of paralysis, he didn't really care about disability politics and access. Years later, as he continued to wait for that cure, Reeve acknowledged that he'd like more curb cuts in the meantime, though this was not publicized by mainstream media.

Is it possible to raise money through a telethon without demeaning disabled people? Telethons following 9/11 and Katrina did not categorize the people the money was being raised for as inferior in order to elicit compassion and donations. Disabled protestors insist on at least that level of respect. On activism and better alternatives, from Disability World:

Don't watch the telethon. Tell your local station ahead of time why you won't. Give directly to the MDA and not during telethon time. Tell them why you are choosing to do that. Also tell the MDA that Jerry Lewis has got to go. He has had years to change the message and has chosen not to do so. Their mailing address and phone number are at their website. (http://www.mdausa.org)

Look up the Muscular Dystrophy Association of Canada (MDAC) and see how fundraising can be successfully done without pity.

Check out the Muscular Dystrophy Family Foundation (MDFF). It was founded by people with MD and their families. They provide the same kinds of services as the MDA. Their pitch is based on empowerment. (http://www.mdff.org) Their spokepeople are rock musicians who have had MD since childhood.

Compare Lewis' MDA pity pitch to that of Easter Seals with their focus on discrimination and architectural barriers; United Cerebral Palsy with their emphasis on careers, education and family; and the United Negro College Fund with its focus on the wrongness of wasted human resources. Tell other people about your conclusions.

And a final note on Hooters: Because Hooters objectifies women and women's breasts, it is part of the societal force that determines preferred or "normal" bodies from "abnormal" or flawed bodies. As a disabled feminist, I find Hooters objectionable on two levels -- for the patriarchal contribution it makes to the objectified "perfect" female form and for the corresponding impact those standards have on disabled bodies. None of this will ever change if the structures reinforcing cultural standards are supported, for whatever reasons. My answer is no.

Crossposted at Echidne of the Snakes
Check there for more comments.


* Marilynn J. "Damaged Goods: The Oral Narratives of the Experience of Disability in American Culture." Social Science & Medicine 30.8 (1990): 849-57.

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."

and

"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."

and

"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 Echidne of the Snakes
Check there for comments.

Terrorism, airport security and the disabled

I haven't flown anywhere since before 9/11 and I've never flown internationally, but I suspect air travel for the disabled using power chairs (and ventilators) is much more complicated now than it ever was before. Especially today with the security crackdown due to information in the UK of a terror plot.

Currently, no carry-on luggage is being allowed except a single clear plastic bag per passenger. According to the BBC, this is what's allowed in that plastic bag:

Pocket-size wallets and pocket-size purses plus contents (for example money, credit cards, identity cards etc (not handbags

Travel documents essential for the journey (for example passports and travel tickets)

Prescription medicines and medical items sufficient and essential for the flight (eg, diabetic kit), except in liquid form unless verified as authentic

Spectacles and sunglasses, without cases

Contact lens holders, without bottles of solution

For those travelling with an infant: baby food, milk (the contents of each bottle must be tasted by the accompanying passenger) and sanitary items sufficient and essential for the flight (nappies, wipes, creams and nappy disposal bags)

Female sanitary items sufficient and essential for the flight, if unboxed (eg tampons, pads, towels and wipes)

Tissues (unboxed) and/or handkerchiefs

Keys (but no electrical key fobs). All passengers must be hand searched, and their footwear and all the items they are carrying must be X-ray screened.

Pushchairs and walking aids must be X-ray screened, and only airport-provided wheelchairs may pass through the screening point.

In addition to the above, all passengers boarding flights to the USA and all the items they are carrying, including those acquired after the central screening point, must be subjected to secondary search at the boarding gate.

Did you catch the likely problems for various disabled folks? Liquid medications must be "verified as authentic." "Walking aids must be screened." "Only airport-provided wheelchairs may pass through the screening point."

It's always smart to travel with prescriptions as evidence for medication and other medical concerns, but if mothers are being asked to taste their babies' bottled milk at screening points what are diabetics being asked to do with their insulin vials? How does this authentication take place and how consistently are the least... invasive procedures being used?

Since prosthetic legs are walking aids and have been subject to security search since 9/11, it's likely amputees are required to remove them today as well. Are other limbs searched too? Are travelers given a little privacy for this or does it occur in the hallway right at the checkpoint with a line of people staring? Are airport-provided wheelchairs x-rayed too? Are those using them given an adequate and safe place to sit while the equipment is taken and checked? Can an x-ray machine even distinguish the aluminum and steel of canes, walkers and chairs from anything suspicious? My understanding was that they could not, and this was why I was always directed around the walk-through devices at checkpoints and searched with a pat-down, a mirror-on-a-stick, and a handheld scanner.

What happens to the travelers who must surrender their power wheelchairs and scooters? They might have been fully capable of traveling alone without these surprise restrictions, so are they provided with appropriate assistance for whatever they need between the checkpoint and the plane seat? Like a last chance to use the restroom? I can't imagine the airlines have the staff for this, so likely these folks are simply unable to pee until they reach their destination (How many hours for a flight from Britain to the U.S.?) Pee on the plane? Surely you jest. You've been in those little closet-like restrooms, right? Accessibility of airplane bathrooms is largely a joke -- a big bladder-filled knee-slapper. Luckily carry-on liquids are banned too, though any knowledgeable gimp traveler is on a self-imposed liquid fast already.

Never in my many pre-9/11 airport experiences did I see an airport-provided wheelchair with a headrest. (And the newer aisle chairs lack them too.) If these don't exist now, there are folks like me who literally may not be able to sit in these loaner chairs without serious risk of injury. How is this handled? Are these people given a pass to keep their power chairs until the gate? (Unlikely.) And are power chair users really surrendering their $5,000 - $10,000 machines at checkpoints with a prayer they show up at their destination unharmed and useable? (As it is, it's incredibly common to get off a plane and find equipment so damaged it's unusable with hundreds of dollars of repair needed -- and never any reimbursement, btw.)

What about gel-cell batteries that power these machines? The list of banned materials includes wet-cell batteries and all explosives, but laws for disabled access have always allowed gel-cell batteries that will not spill. Since today's restrictions specifically ban "liquids and gels" from carry-on, I expect there's some confusion about gel-cell batteries today. There was confusion throughout the 1990s when I flew, so why should this new stressful situation bring clarity to that? I was constantly defending my batteries, arguing to keep them, keep them with my chair, label them as mine before they disappeared forever from me.

None of these concerns trumps the security of not being blown to bits while over the Atlantic, I know. Disabled folks want to make it to their destinations in one piece just like everyone else. But they do want to make it to their destinations. And they want to get there without humiliation or harm. If heightened security is the price we pay for living in today's world, which of these safety measures will only be temporary? Is education on treating the disabled with respect when working airport checkpoints part of security training?

What level of discomfort or humiliation is the proper price for safety on airplanes? That question isn't any easier to answer than the question of how much freedom of speech or privacy we should relinquish for national security, but it does impact disabled folks more. And it's worth everyone's consideration.

Crossposted at Echidne of the Snakes
Check there for comments.

Guest blogging for the Goddess

Once again, I'm one of several guest bloggers Echidne of the Snakes has lined up for the next week (starting yesterday), and I'm thrilled she asked me. Always interesting, Echidne's blog is temporarily a rather fascinating mix of blogging folks -- my friends Skylanda and Hybrid, Pseudo-Adrienne, Coturnix, Olvlzl, and me. Since Echidne gets far more traffic at her place, the comments to anything I write for the next week are bound to be more numerous over there. So check it out.

Doug Dawson Was A Man

This comment about my July post on Doug Dawson, the homeless wheelchair-user in Spokane, Washington, who was murdered when set on fire, deserves it's own attention. Al Chidester apparently met Dawson just a few weeks before his death:

I met Doug Dawson on highway 2 west of Spokane on June 2, 2006. He was crossing the road when some plastic bags in which he was carrying what little he had became tangled in his wheelchair spokes in the middle of a traffic lane as the light changed. I pulled over and got him off the road. He was heading back to Spokane after failing to get a ride to Davenport WA to check on his mother’s house and visit a friend. I took him to Davenport for his visit, where he arranged to meet his sister at the House of Charity where his SSI check is mailed so she could help him get a place to stay.

Doug told me that in May he had given a woman friend $300 to go get him an apartment or a room, but that she never came back with money or news of a room. He said that he slept where he could in the alleys and parking lots and that the “House of Charity” didn’t welcome him anymore because he didn’t always observe their rules on alcohol. Doug told me he had lost his leg at 23 (he was nearing his 50th birthday) – hit by a car in Airway Heights. This turned out to be a little misleading, implying some kind of traffic accident. It was actually a freight car he was trying to hop to get to Davenport. He had been drinking and slipped under the wheels. This is according to a housemate of mine who knew him well and was one of the folks who always tried to help Doug.

In the end Doug seemed to have succumbed to the hopelessness of the “cast away as societal trash” situation he was confined to by the callous greed of our “help the rich get richer and we’ll all prosper” society. One of the ways we help the rich get richer is to cut help to the poor and homeless so we can cut rich folks’ taxes. Another way is to criminalize the behavior of the poor, force them to pee in a jar to find work, blame them for their addictions to the alcohol and cigarettes we tax, and the illegally obtained prescription drugs whose real source is the large pharmaceutical companies who are the real pushers. They even advertise on TV. The rich get richer and the poor get prison for their drug “crimes”, and who owns the private prison corporations that have become fashionable hellholes in states like Texas? – the rich, of course.

When the news hit I wrote this song. An email to alchidester@juno.com will get you a free mp3 of this one, or check out my website: www.leftneckrecords.com

Doug Dawson Was A Man
©2006 Alan C. Chidester aka Fiddlin’ Big Al

Doug Dawson was a man
Who held a bottle in his hand
He tipped it ‘til he drained it dry
Then Doug rolled off for some shut-eye

Many years ago, they say,
A bottle took his leg away
Trying to hop a freight car home
Doug slipped beneath the wheels alone

Doug didn’t have a happy life
But there was a fire in his eyes
And a will to live that passed all pain
Though One-Leg Doug became his name

Refrain: “Doug Dawson was a man …”

I picked him up, he was alone
He was still trying to get home
To Davenport on highway 2
Then on back to Spokaloo

With that fire in his eye
Doug said “Sometimes I wish I’d die.
You don’t know what all I go through
And people, they can be so cruel.

My SSI Check comes next day
Perhaps I’ll find some place to stay”
I am so tired of rollin’ on
With not one place I can call home.”

Refrain: “Doug Dawson was a man …”

I dropped him off by Sonnenberg’s
“God bless you, brother,” his last words
As he rolled off among his friends
And onward to his tragic end

What kind of twisted trick
How can people be so sick
To set a man on fire
And watch him burn

Though his killers may have names
There’s many more than two to blame
Obsessed by money, power and fame
We cannot feel another’s pain

He may be lost but so are we
With eyes so blind we cannot see
Our duty to our fellow man
To simply lend a helpin’ hand

Doug Dawson was a man
Who held a bottle in his hand
He had a heart that few could see
But I had some luck, he showed his heart to me

Doug Dawson was a man
Who held a bottle in his hand
He tipped it ‘til he drained it dry
Then Doug rolled off for some shut-eye

Fiddlin’ Big Al, aka Al Chidester

Parallels in Time

I hadn't seen this before, and I haven't watched all of it yet, but Parallels in Time: A History of Developmental Disabilities seems very thorough and interesting.

Navigating

When I began this blog, it was in response to being the only person identifying as disabled in a private online feminist community where I felt constantly compelled to add my disability perspective to every second discussion that occurred. That got tedious for all of us, so my plan was to come here and write about how I interpreted portrayals of disability in books and film. My friends could read up as they chose, and I could get off my soapbox a bit more in our little community.

I knew there'd be some political commentary here now and then, but blogging is an addictive form of narcissism and I had much more to rant about than I suspected. Also, it turns out that every second book and film out there has some portrayal of disability but reviewing them all would slow down my consumption of them. And I'm a movie junkie, so that won't work.

Since high school I've maintained a strategy of not volunteering information about my impairments or health condition as a way to protect my privacy. It comes up often enough through other people's curiosity (and friends' genuine concern) anyway, and in political discussions I've found that my specific physical impairment issues can get confused with personal experiences that are caused by societal conditions.

My specific impairments are irrelevant to the general phenomenon of ableism (and nondisability-centrism -- which is a word I just made up). But increasingly I find I'm interested in sharing specifics to the extent that they might help me explore and discuss the variations in disability experiences that social reactions to various impairments create. I've been moving along the spectrum of ability my whole life (as is everyone, actually) and I think the changes in my experiences are relevant to many disability issues I might blog about. Disability blogging has also been exploding all over, so there's more opportunity to share variations of experiences as well as commonalities.

So. I'm going to be writing some stuff that includes more specific details about my impairments, though I don't yet know how much or what boundaries will make me comfortable. I'm reserving the right to answer or not answer any questions that might arise. I'm saying up front that whatever limits I impose are not about being coy or mysterious, though I'm pretty good at both, aren't I? Anyway, we'll see how it goes. The general theme of this blog remains the same.

Saturday Slumgullion #7

• Mark Siegel of The 19th Floor comments on the courting of disabled voters in Maryland by Republican Governor Robert Ehrlich. Ehrlich's blind running mate, Kristen Cox, and his record on serving disabled constituents both suggest he may even be committed beyond election day.

• Wheelchair Dancer has an excellent list of do's and don'ts on "How to push a wheelchair" that covers everything I would have thought of and more.

• A British man visiting Florida set off airport alarms, was strip searched and perused by sniffer dogs, all because he'd had radioactive iodine therapy six weeks earlier. Via Ouch!

• John Kelly at NAG checks out a different sidewalk configuration to see if it makes wheelchairs and their users any happier than the trendy brick that can be so painful to travel over.

• Femimonkey at Live Journal's Disabled Rage briefly explains how cell phone companies make their technology inaccessible to the blind when it wouldn't have to be.

• A Japanese insurance company claims several Japanese travelers pronounced "brain dead" in Canada and the United States recovered back at home. Of the nine clients the company talks about, the three who were flown home improved while the six who remained in Canada and the United States died.

• Stephen Kuusisto of Planet of the Blind comments on an old Rolling Stone interview he read where John Lennon expresses disgust at seeing cripples sitting up front at a Beatle's concert. Lennon imagined they were there to be healed. Imagine that.

• Sara at Moving Right Along cracks me right up with a picture of herself. It's the first photo of the post.

• Joseph at Deaf in the City discusses sentimental myths about the ability to hear and how much hearing people actually get out of the music they enjoy.

• Along the Spectrum provides a brief review of the Joss Whedon flick Serenity that examines the relationship between River and her brother Simon in terms of how one should treat someone with autism.

Movie review: Tsotsi

The 2005 Academy Award for Best Foreign Language Film is only one of many awards Tsotsi has won. Johannesburg slang for "thug," the "tsotsi" of the story shoots a woman and steals her car, only to find an infant in the back seat. Over the course of six days, Tsotsi recalls his own childhood as he struggles to care for the baby. Despite the violent world he lives in, Tsotsi finds the baby stirring his own buried feelings of loss and abandonment and his humanity.

Shortly after Tsotsi has taken the baby home, he terrorizes a paralyzed beggar, accusing him first of faking his disability, then demanding the man's money. When he finally asks the man why he goes on living when it means "living like a crippled dog," the man replies that he enjoys the warmth of sunshine on his face. This begins Tsotsi's troubled quest for a life beyond dispassionate violence.

Since the infant cannot speak in defense of it's own life, the disabled man symbolically plays the role of helplessness for him. Tsotsi unconsciously seeks out the cripple, acting with belligerence and curiosity. To his question, he receives an answer about the intangible qualities that make life valuable for even the low and abandoned of society.

The story is much bigger and more beautiful than this tension-filled scene with the disabled man, but it contains the seed of the film's humanity. Disability is used to symbolize helplessness in order to voice the value of the stolen baby's life to the young thug. Additionally, the devastation of AIDS is a subtle presence in the film, showing how racism, poverty, and disability interact together in today's Africa.

Movie review: How's Your News?

The hilarious and charming documentary How's Your News? was released in 1999, but I'm glad I've seen the DVD version with special features clips that make the film a more rounded experience. The film follows five people with developmental and physical disabilities as they travel the country in a hand-painted RV interviewing people they meet.

This movie is something of a litmus test into your own deep feelings about interacting with developmentally and/or physically disabled folks since you can't help imagining how you would react to an attempt to be interviewed. And you can see how nondisabled people in the film feel as they either pass the interviewers by or engage them in conversation. True to my experience, one of the most willing ends up being a hollering streetcorner evangelist -- something I find both funny and sad.

There's Robert Bird, who understands what other people say just fine, but has some sort of speech impediment that makes his own words unintelligible. His report from the Continental Divide is the highlight of the film for me. He makes perfect sense. And not. Robert's conversations with strangers on the NYC streets are fascinating to watch.

Reporter Ronnie Simonsen likes to do impersonations of celebrities for the people he interviews. He's interviewed several celebrities in the past, and keeps in touch with many by mail, including Chad Everett, his "Spiritual Brother," whom Ronnie has a deep and abiding love for because of his role as Dr. Joe Gannon on TV's Medical Center back in the 1970s. The DVD special features section offers the climactic scene of Ronnie's quest to meet Chad, and includes his Ode to Chad Everett, which stuck in my head like a jubilant earworm for days.

When the crew reaches Venice Beach, California, their interview success increases, proving that abnormal is just normal in the land of LA. Sean Costello, Susan Harrington and Larry Perry all meet folks almost as interesting as themselves.

I wish the documentary had a sequel, though there is a cd of music (since the reporters love to sing), some fantastic interview footage from the 2004 presidential election (including Rob Corddry, G. Gordon Liddy, Hillary Clinton, Andre 3000, Triumph the Insult Dog, Jerry Springer, Newt Gingrich and Ben Affleck), and current news about the film's stars at the How's Your News? website.

If you haven't spent much time around people with developmental disabilities, the documentary is a low-pressure way to meet a few. If you have some friends with developmental disabilities, these reporters will be a delight to follow as they tour the U.S.

Frequently bizarre happenings

Agent Fang at Fangworld explains her latest weird experience while traveling and asks the question:

I sometimes wonder if I'm unlucky when it comes to working away accomodation, or if these frequently bizarre happenings are something every disabled person experiences?

Generally, I do believe disabled people experience frequently bizarre happenings for a variety of reasons. As disabled dude Neil Marcus once noted, "disability is not a 'brave struggle' or 'courage in the face of adversity'... disability is an art. It's an ingenious way to live." Any situation requiring an original, creative approach is probably likely to end up being bizarre more often than a situation that doesn't require ingenuity. I can fairly say that as a person who uses a wheelchair I have had hundreds of experiences both social and physical that the nondisabled people I know have never experienced personally.

Example: I've been carried into a building and up three flights of stairs by a firefighter. There'd been a kitchen fire in someone else's apartment and the elevator couldn't be turned on again until the building inspector came the next day.

I have more, of course. The most recent are from my extended hospital stay, probably because many things happening in a hospital are bizarre to most people. But more on those another day.

Am I right? Agent Fang isn't unlucky, she's disabled and therefore lives in the world of weird. Disabled or not, do you have frequent bizarre happenings and what do you think is their cause?

Talking language

Recently, Bookslut's Jessa Crispin said this while commenting on Suzanne Braun Levine's Inventing the Rest of Our Lives: Women in Second Adulthood:

The last ten years or so has seen in a rise in what I like to call the Special Olympics version of feminism. Nothing you do is bad or wrong, because it's all about finding the authentic version of you. (Thanks, Oprah.) Leave your husband and abandon your children in order to go have casual sex with a yoga instructor? Good for you, you're getting in touch with yourself as a sexual being. Give up sex entirely and tell everyone that (solo) flamenco dancing is all you need anymore? Good for you, you're rejecting society's pressure on women to be sexual beings. Quit your high paying job and become a stay at home mother? Good for you, you're doing the most important work in the world.

According to the City Journal, this version of feminism has taken over the brains of formerly influential and important feminist thinkers. As recently stated by Marjane Satrapi, "I don't know why people, when they become older, become stupider."

The Special Olympics of feminism. Taken with the Satrapi quote, my guess is Crispin means that the last decade of feminism has been a competition of stupid beliefs about what empowers women. Perhaps she's thinking it's a competition among "retarded" beliefs, which really isn't synonymous with "stupid."

Noting the examples Crispin says are about feminism (I'm not familiar with either of the books linked to at Amazon), I'd call it a competition of amusing political justifications women make for their lives. Crispin is snappier but crueler. No interpretation of her phrasing suggests anything but unkindness in her reference to developmentally disabled folks.

Not that the joke is original. Unfortunately, it's all too common. Kestrell at Blog of a Blind Bookworm noticed it too.

What we really look like

I've been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. I've seen several films recently where appearance was definitely part of the tension of personal encounters, and I spent yesterday (101° in Minnesota, yo!) out and about in Minneapolis paying attention to possible changes in how nondisabled strangers treat me. When I thought of it. Mostly I just had fun.

I had my quarterly appointment to get my PEG tube changed for a newer shinier one. I say that like I've been doing this for years, but I've only had a feeding tube since November when I nearly died of malnutrition, my stomach refused to do any more digesting, I got aspiration pneumonia from constant vomiting and took a helicopter ride. Then I woke up with my new friend, PEGgy. This particular incident began with a delicious Chipotle's burrito and I now mourn the fact that the thought of eating another someday only makes me think of hurling.

Anyway. The tube gets replaced every three months. (Incidentally, Dr. Perky had told me they never need replacing when I had expressly told her mine was starting to feel floppy and asked if she would check on when the switch might need to occur.) So every few months now I will migrate into The Cities to the hospital where my stoma was born for this amazing procedure. And it is amazing -- I watch on an x-ray monitor, completely unsedated, while someone pokes a guidewire down the tube, deflates the balloon in my stomach, pulls out the old tube and threads in the new one like he's snaking a drain. It takes less than five minutes and it's totally cool to watch. But I digress.

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. The only spontaneous smile I received from someone I didn't need to interact with was from a young Somali woman selling beautiful silk clothing at the newish Midtown Global Market, also known as the most fabulous food court in the entire state, by the way. Jamaican jerk chicken. Mmmmm. Again, I digress.

(Oh, wait. Can anyone familiar with Pocky and the astounding variety of flavors it comes in tell me what's up with the "Men's Pocky"? Is that man-flavored or candy viagra, or what?)

Okay, so I know it's fear of difference and the old "there-but-for-the-grace-of" thing. And that's fed by a history of segregation and institutionalization. I'm 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else. Hollywood hiring beautiful nondisabled actors to portray us on film doesn't help fearful people get used to being around actual gimpy bodies either.

Which brings me to these photos of the New York celebration of the ADA's anniversary last week. Real people. And some hot transportation I covet. Great photos from Aleja at No Pity.