Society for Disability Studies 2007 CFP -- Not just for scholars

Call for Proposals
Society for Disability Studies
20th Annual Conference
Seattle, May 31-June 2, 2007
“Disability & Disability Studies: Works in Progress”
Submission Deadline: 15 November 2006

2007 marks the 25th year of the Society for Disability Studies, and the field has changed dramatically over the last quarter century. As Disability Studies continues to grow, increasing its presence in university departments, cultural criticism, and art and knowledge production, SDS wants to take this anniversary opportunity to reevaluate the discipline and reflect on the state of the field. Current Disability Studies scholarship differs from much of that which precedes it, most notably in its efforts to be more inclusive, offering a more complex conception of what constitutes “disability.” Rather than remaining rooted in a particular cultural moment or ideological understanding, Disability Studies is a work in progress.

In order to encourage this kind of self-reflection, both as a field and an organization, this year’s conference addresses the idea of “works in progress,” paying particular attention to the following themes:

Disability is a work in progress. What does “progress” mean in terms of disability? How has the notion of “progress” itself been used to justify the oppression of people with disabilities, and how can these histories serve as points of coalition with other peoples marginalized in the name of “progress?” How have ideologies of “progress” been used to create and maintain categories of “disability,” and how do these histories inform and inflect histories of race, ethnicity, class, gender, sexual orientation, nation, and religion? How are definitions and representations of disability in progress, shifting according to the needs of capital, policy, and resistance? How are current immigration practices and debates building on existing notions of disability? Are the increases in disabled veterans in the US and its allies, and the massive numbers of peoples injured by occupations, invasions, insurgencies, and other conflicts worldwide, transforming our understandings of “disability” in terms of theoretical analysis or public policy?

Disability Studies is a work in progress. In its efforts to inform disability policy and understanding, the discipline has too often neglected salient categories of analysis. What issues have been swept under the rug and at what costs? What are the reasons for this lack of critical examination? As Disability Studies has grown, how has it marginalized particular methodologies, theoretical frameworks, or knowledge bases? Will the discipline benefit from a broader, more comprehensive focus, and if so, how? How does current Disability Studies scholarship vary from previous Disability Studies scholarship? At this stage in the field’s development, what possibilities for collaboration with other fields and knowledges exist? Where is the discipline headed?

SDS is a work in progress. Consider, for instance, the organization’s recent efforts to integrate race and ethnicity. Where are the points of future growth? How might SDS develop an international or transnational focus, more actively engage individuals with intellectual disabilities, facilitate the inclusion of grassroots activists, and encourage academic and/or political involvement with questions of war and immigration? What barriers currently prevent the participation and inclusion of these individuals and concerns? What role, if any, has SDS played in the construction of these barriers? How are artists, scholars, and activists deconstructing them, and what might the organization learn from their efforts?

Access is a work in progress. Often, the tendency at conferences is for participants to present completed work. This can have the effect of the presenter talking at the audience instead of to them. This conference encourages participants to try out innovative forms of access while bearing in mind ways of actively engaging the audience. For example, how can participants share their work in creative, less traditional ways in order to increase access? What can participants do not only to honor but further SDS’s access policies? How might conference access itself, and particularly presentation access, be a matter of research and discussion?

“Work” is a work in progress. Arguably, barriers often exist between Disability Studies scholarship and disability activism. One aspect of this conference will be to address these barriers through the lens of “work,” engaging divides between scholarship and activism in new ways. How might scholars and activists conceptualize their work differently? Are some kinds of work valued more than others? In what ways does each group’s work inform the other’s? How might insights from disability research translate into community activism, and how might activist projects be translated into research projects? How might the two groups—Disability Studies scholars and disability activists—work collaboratively? What are the benefits in drawing firm lines between these two approaches to disability, and what might be the attendant risks in doing so?

SDS invites activists, artists, and scholars to submit proposals for all work in progress in Disability Studies. Work can be submitted in a variety of formats, including paper presentations, poster sessions, performances, video/DVD recordings, etc. The Program Committee will make every effort to honor participants’ requests insofar as presentation format. We ask participants to bear in mind that the committee may reassign participants to other presentation formats, styles, and panels in order to develop the richest program possible.

Contact information and additional submission details provided at the link above.

Congressional Oversight Committee on the ADA

Today the U.S. House of Representatives Judiciary Committee, Constitution Subcommittee, held an oversight hearing on "The ADA: Sixteen Years Later." Witnesses included Tony Coelho, Robert L. Burgdorf, and Naomi Earp, former House member, professor of law, and EEOC chair, respectively. Video of the hearing available here.

ADAPT on NPR's Morning Edition

Listen for Joseph Shapiro, author of No Pity, on Friday's Morning Edition of NPR. He'll be discussing ADAPT (American Disabled for Attendant Programs Today) and their efforts to free disabled people from institutions and insure accessible, affordable housing is available. ADAPT has been making noise in Washington, D.C. this month.

Grab your scalpel

Even this virtual hip surgery made me squeamish, but it is very cool.

Chairless classroom creates spatial inequality

Mayo Clinic researchers have designed a chairless classroom that they say may cut down on childhood obesity even as it helps children focus on learning and being happier in school.

"We know that a major culprit behind obesity is a lack of physical activity," says Dr. James Levine, a Mayo Clinic obesity researcher who has studied the connection between everyday movement and weight.

Levine wondered if a different type of classroom could encourage movement, and ultimately, reduce the risk of obesity. Earlier this year, Levine and Mayo Clinic colleagues put the notion to the test. They designed what they believe is the first classroom without chairs using a range of creative and mobile tools. Each student had a "standing desk" on wheels that could easily move around the classroom. Apple loaned wireless notebook computers and iPods, which students used in regular learning activities.

My high school chemistry class had high tables and stools for students to sit at. The experiments were done at these tables or at the high counters along the walls. Each student had a table and lab partner -- except for me. I sat alone at the front of the class at a low table about a yard from the chalk board.

When we had experiments, I joined some duo, peering at what they worked on with the project at my eye level. There was no way I could participate hands-on, particularly when volatile chemicals were used. A few experiments I could do at my low table. Alone. Where I didn't have the camaraderie of teamwork that the other students all enjoyed.

Similar to my chemistry classroom furniture, many restaurants now feature tall tables and stools for guests. Some busy lunchtime cafes even have wall-hugging counters with no chairs at all so workers can stand and eat -- part of the hurried lunch break of American work culture. By law, these establishments have to provide accessible wheelchair seating. I don't know what the exact occupancy ratio is, but frequently this means one or two normal-height tables in a corner somewhere for the likes of me -- if the place is ADA-compliant. A similar problem exists in bars, and restaurants that have lots of booths.

When an environment is apportioned out so that, by furniture design, wheelchair users are excluded from most of the space and all that space creates a social environment as high or higher than the wheelchair user's eye-level, the exclusion can be keenly felt. It's spatial discrimination, really. There's a place for you, but you can only stay in your place since the rest of the environment is designed in a way that is not usable.

It's fundamentally different from seating at, say, a stadium or theater where wheelchair access seating must be integrated into the whole floor plan. It may not be optimum seating -- in fact, it rarely is, since building owners can make more money keeping the premium seats wheelchair inaccessible -- but there's the potential for everyone present to be seated, more or less equally. (Nondisabled people standing at concerts and giving wheelchair users only butts to look at from their equally-expensive seats is another topic for another day.)

I like the idea of classrooms where the furniture is all mobile and teaching allows for movement and more dynamic and varied gatherings of students, but if classroom furniture begins to be designed for the standing student, the sitting ones will be even more excluded spatially. The mobile part would be excellent -- more room for wheelchairs to get around. But furniture for standing students raises the plane of classroom conversation over the wheelchair user's head.

The ADA doesn't account for perceptual/conceptual discrimination of this kind so there would be no legal recourse, as far as I know. I'm all for making classroom learning a more comfortably physical experience. Perhaps there's some way to copy what I'm told is a West Point custom: students who feel in danger of falling asleep during lectures are encouraged to get up and stand in the back of the classroom, promoting activity to focus attention. At least that's voluntary.

Article via Amy Tenderich at Diabetes Mine


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48

Here at the Gimp Compound, my amazing parents are celebrating their 48th wedding anniversary. I just want to say a simple

Congratulations!
I love you!

Five years later

There's some fine writing elsewhere today about 9/11 and looking back through the last five years at what it's meant to Americans. I'll refer you to more eloquent bloggers for that.

There are also some touching stories of heroes from five years ago and the devastating health effects of working in the debris.

Providing an education

When I was twelve, doctors told me I was rarer than one-in-a-million with a condition called sarcotubular myopathy. It's not a flamboyant disease. Nothing that would make good TV emergency room drama. But apparently I am medically "interesting."*

I've seen hundreds of doctors in my life, many at teaching hospitals where student doctors are a common feature of consultations with specialists. In theory, I enjoy being an active part of the learning process in the field of medicine. In practice, the presence of students fundamentally changes the doctor-patient relationship so that I'm much less the priority at my costly (and sometimes crucial) appointments. A couple times, a doctor with something to prove to his students has left me feeling like the object of abuse.

I've had good experiences with student doctors, student nurses and student respiratory therapists (also student nurse's aides, student x-ray techs, student phlebotomists, etc.) but I'm going to describe one bad experience. Someday soon, I'll relate my worst medical student experience -- this isn't it. But both happen to have occurred within the last few years at a world-renowned hospital I have generally excellent opinions about.

The neurology department patient waiting rooms all have inaccessible examining tables with fancy dark wood sides that match the decor. In fact, the only accessible examining tables I've seen at this world-famous clinic are in the physical medicine department. But I'd seen neurologists before, and the last one had no problem with me remaining in my electric scooter while he tested my reflexes and the strength of a few muscles. The steering column pops out so it's easy to get close enough to me. I'm just lower than usual and sitting somewhere stable instead of perched on a bench I can't get to myself and need someone else to hold me upright on.

I hadn't met this Dr. Neuro before, and he came in with three residents. The students stood quietly in the corner while Dr. Neuro reviewed my medical history with me. All went well until he inquired if I could get up on the examining table and I replied that it was very inconvenient and suggested I stay in my scooter chair. He may well have had excellent reasons for preferring to use the table, but it was clear from his sharp response and demeanor that his sudden shift to insisting I get up on the table was related to the presence of the observing residents.

So we did it his way, with my parents and the residents assisting, and two residents helping me as I struggled to remain sitting atop the table without any useful support. Needless to say, testing the reflexes of a woman tensed to keep her head upright and her body from falling to the floor was impossible. I didn't stay up there long. It was readily apparent that the only thing to be learned was that I do indeed have severe muscle weakness, as both my patient records and I had declared.

I accept that I may be asked to do physically difficult or uncomfortable things to get medical treatment. I don't have a problem with that or with attempting things trial-by-error. I also know doctors take each "fact" a patient tells them about themselves with professional scepticism and I'm glad that they do. But I don't need an ego contest to come between me and my medical care.

I don't recall the rest of the appointment or if anything useful was determined or planned. Dr. Neuro was gruff and when the appointment ended, one of the residents trailing out behind him quietly apologized to me. It was a memorable appointment only because the residents were clearly embarrassed by their boss, and the boss had weirdly seen me as a threat to his authority. I do wonder what, if anything, was learned by the students that day.

__________________________________________

*One thing that makes me interesting with regard to the diagnosis is that I am not a Hutterite male. Not even close.


Crossposted at Alas, A Blog
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Saturday Slumgullion #10

• A Canadian Dimension review of two books about mothers of children with disabilities notes the emphasis on activism and politics rather than just personal experiences. The books are Battle Cries: Justice for Kids with Special Needs by Miriam Edelson and Becoming Citizens: Family Life and the Politics of Disability by Susan Scwartzenberg.

• Michael Bérubé shares a Chicago Tribune article where Jerry Lewis compares MDA Telethon protestors to those delightful poster children of Islam -- Hezbollah.

• Nat Hentoff of The Washington Times looks back at the Schiavo case as Michael Schiavo becomes a Democratic shill for the right to die.

• Vicki at Speak Softly writes a letter to a Nameless and Shameless Physical Therapist for, well, being a professional asshat. Meanwhile, Sarahlynn at Yeah, But Houdini Didn't Have These Hips evaluates the system that declares her precocious Ellie to be "severely delayed in cognition." She finds, well, asshattery.
  

• The photojournalists' blog WarShooter features captivating pictures of "Disability in Cambodia," though the repeated use of "suffers from-" should be ignored, if possible, unless the condition following that phrase is replaced by "abject poverty."

• The current issue of Clamor magazine features a report on "The New Wartime Body" where Dennis Clarke, a doctor specializing in lower-extremity amputees and getting them prosthetics, says:

“The prosthetic industry is moving forward because of war.... War is the single driver of technology in our profession. The net effect of these young and vibrant amputees is that they are pressing forward and doing well; that makes us look good. Technology does not lead change. Need leads change, and war is good for business because it necessitates need. One could argue that as earnest an anti-war statement could be made regarding the same issues.”

• ComicFoundry features a two-part analysis by Franny Howe entitled "Dissing Abilities: The Contradiction of Disabled Superheroes." It's on the strange hero-worship of animated freakery.

Crossposted at Alas, A Blog
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Part D drug formulary quirks

I'm signed up for Medicare Part D, though it wasn't by my choice. The company they chose for me sent me a huge packet filled with information, rules, disclaimers, and a partial drug formulary -- that is, a partial list of the prescription drugs they've decided to cover at this time. Since local Republican politicians are swaggering in their campaign ads about how they helped create this giant headache, I thought I'd look at some details of which drugs my assigned company covers.

I freely admit I don't have any professional training that informs me about prescription drugs. My observations are purely as a layperson looking at the formulary that people must refer to in order to see if what company and plan they will choose.

My particular company is in the Medicare Part D business in all 50 states and Washington, D.C., though co-pays and monthly premiums of plans vary from state to state. Here in Minnesota, the three different plans offered vary by co-pay, premium, and when the doughnut hole begins (though it's federally-mandated that the doughnut hole end at $3,600). These three plans are named "Signature," "Complete" and "Premier," which, of course, tells you nothing whatsoever about how they actually compare. You can't even determine basic versus fancy coverage from the plan names.

Drugs are categorized according to whether the plan covers them: "generic," "preferred," "non-preferred," "specialty," and not covered. Looking at the online Signature plan formulary, which has the lowest monthly premium, here's what I can observe:

Under antidepressants, the only two brand-name drugs that are preferred are the MAO inhibitors Nardil and Parnate, both of which I've never heard of and were omitted from the formulary I received by mail. Every listed brand-name reuptake inhibitor (Cymbalta, Effexor, Lexapro, Paxil, and Zoloft) is non-preferred, meaning the consumer cost will be higher. They are all also listed as "SE," which inexplicably stands for "step therapy." This means that these drugs will not be covered by the plan unless you first try some other drug of the company's choosing, probably a generic drug. There are many generic antidepressants covered, but if you don't have a prescription for them or the brand-name equivalent, you need to visit the doctor for a new one or pay the non-preferred brand-name price.

Almost all vaccines listed are generic or preferred. A few are "specialty" and require prior authorization (PA) from the company in order to be covered.

All anti-HIV agents seem to be brand-name and preferred.

Under "bipolar agents" only Depakote and the generic lithium carbonate are in the formulary at all. Depakote is non-preferred here and wherever it's listed elsewhere.

All but one "blood glucose regulator" is either generic or preferred. So diabetics get better coverage than those who are bipolar, it seems.

Under "dyslipidemics" -- apparently cholesterol-lowering drugs -- it's a very mixed bag: There are generics. Crestor, Lescol, Vytorin and Zycor are all preferred, while Advicor, Lipitor and Zetia are not.

Cialis, Levitra and Viagra are all preferred, though quantity limits (QL) exist.

"Sex hormone modifiers" -- birth control -- are mostly generic or preferred. Plan B is non-preferred. Don't tell me that's not political.

The only "sedative/hypnotics" listed are Ambien and the generic chloral hydrate. Ambien is both non-preferred and has a QL.

All of this can be changed at any time, though consumers can only switch plans at certain times during the year. I haven't been able to find any information on when those times you can switch plans occur.

A new Kaiser Family Foundation study resulted in the following information about Medicare Part D:

Eight in 10 pharmacists (81%) say that they have had customers who had problems getting their prescriptions. One in five (19%) say such problems affected “most” of their customers in Medicare drug plans.

Two in three pharmacists (67%) say they had customers leave the pharmacy without a medication because the prescribed drug was not on their Medicare drug plan’s formulary.

Almost six in 10 pharmacists (58%) say they had customers pay out-of-pocket for their drugs because they could not verify their enrollment in a Medicare drug plan.

Nearly half of pharmacists (49%) say they had customers leave without a prescription because they could not afford the co-pay charged under the Medicare drug plan.

Nearly half of pharmacists (45%) who serve “dually eligible” beneficiaries, who were previously getting coverage through state Medicaid programs, say that these customers experienced more problems filling their prescriptions than other Medicare customers.

Among doctors with patients in Medicare drug plans, 59% say that they have had patients who experienced problems getting their prescriptions, with 15% saying “most” of their patients in Medicare drug plans had such problems. One in 10 (10%) say that they had a patient who suffered a “serious medical consequence” as a result of such problems.

And on the business side:

More than one in four (27%) say that they had to take out a loan or a line of credit because of cash-flow problems related to the Medicare drug benefit. About three in four independent pharmacists say both that they have dispensed prescriptions to their customers without knowing whether they would be paid and that the reimbursements they receive from Medicare drug plans are less than what they get from commercial payers.

It's hard to make conclusions from the formulary, though the Kaiser survey supports the idea that the program has a knack for denying some consumers the drugs they need. At the very least, it's become much more troublesome to maintain your health if you have to use Part D. Choice really isn't part of the plan. It's been replaced by uncertainty.

Crossposted at Alas, A Blog
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Nothing about us without us

I haven't been able to stop thinking about this (.pdf file) since I read it a week ago. It's the text of a speech by Jim Elder-Woodward given to the Scottish Disability Equality Forum in 2000 that begins with a description of events at the 14th World Congress of Rehabilitation International in Winnipeg, Canada, in 1980.

At this Congress, Rehabilitation International published its own Charter, the central aim of which was to call on participating governments to take all necessary steps to ensure disabled people had full integration and equal participation in all aspects of the life of their communities.

However, at the same congress, the Executive of Rehabilitation International turned down an amendment to its constitution, proposed by the Swedish delegation, that disabled people should comprise 51% of its ruling body.

All hell went loose when this decision was announced. There were approximately 200 disabled people at the conference from America, Australia, Africa, Asia - everywhere, even the backwaters of Europe. No-one could understand the duplicity of these doctors, social workers, and officials from governmental and non-governmental bodies who comprised Rehabilitation Internationals Executive at that time.

Despite the shock over the executive decision, this sort of paternalism over the lives of disabled people is such a central issue to disability rights that the international rallying cry of the movement is now "Nothing about us without us!"

By 1980, disabled people worldwide had begun to organize specifically for civil rights. The first CIL (Center for Independent Living) was founded in Berkeley in 1970. UPIAS (Union of the Physically Impaired Against Segregation) was founded in Britain in 1972 with what began as a round-robin letter exchange among disabled people -- some stuck in institutions. The 25-day sit-in at the San Francisco offices of the U.S. Department of Health, Education and Welfare had happened in 1977. That was to demand enforcement of Section 504 of the 1973 Rehabilitation Act, which said that any organization or service accepting federal money had to be accessible to disabled people -- public transit and other public places too.

Back in 1980, as part of their rationale for excluding disabled people from their membership, the Executive of Rehabilitation International issued a statement saying that disabled people were not ready to participate in the highly complicated decision-making which they had to undertake.

RI had, at that time, been dedicated to improving the lives of disabled folks for 58 years, yet they refused to allow those same people more than token membership in the democratically-run leadership. Their rationale wasn't uncommon, but the resulting anger at that meeting can surely be given some credit for the successes of the recent UN treaty for the rights of disabled people.

Elder-Woodward on the 1980 RI meeting again:

That night was electric. Disabled people congregated in a side room at 11 pm. There was no organisation, no format for the meeting, no leadership - just an angry mob of disabled people talking in groups and milling around the room. Then Ed Roberts got on the stage. Ed had poliomyelitis and at that time Reagan had not yet kicked him out of his job as Director of Rehabilitation for California. Puffing on his oxygen cylinder, as if he were Harold Wilson, smoking a pipe, he greeted the noisy rabble, by crying out - 'Cabbages of world, unite!'

There was such an uproar of acknowledgement and then all went quite whilst Ed spoke about the need to develop a separate international disability movement.

Those few disabled people organised themselves there and then to draw up their own constitution and began to agree strategies and structures before going to bed at 4 am in the morning utterly exhausted.

I had never felt, nor have since, the galvanising energy which came from such a hungry angry mob of disabled people. They had come from the four corners of the world and they were in no mood to be cast aside by a load of quacks and pen-pushers.

Some of those disabled people went home to countries where the normal treatment of the disabled is beyond appalling, where constant warfare increases the number of disabled folks daily, and where to be disabled means to be sub-human.

The new UN treaty may do very little of actual practicality for most disabled people in the world. I don't know how that all shakes out. The effectiveness of the UN is certainly a continuing debate. But symbolically the treaty is incredibly important. And in the process of hammering it out, hundreds of governments and NGOS like Rehabilitation International had to work with disabled people who were there insisting they determine their own lives. That's a process I'm happy about.

Crossposted at Alas, A Blog
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The joys of impairment

In discussions about quality of life or eugenics or disability pride, some nondisabled person often asserts that it's obvious -- despite all moral arguments on the value of disabled persons lives -- that a body with impairments is just physically less desirable and not something any sane person would choose. Lacking something can't possibly be better than having it, right? It's an argument that always fascinates me.

It fascinates me because it seems like a very specific aspect of physicality to decide unequivocably that there is one obvious answer for when we recognize such biologically-based statements about sex or even body weight are problematic. Being one sex or the other means that each of us physically has some abilities and some lack of abilities that those of the other sex don't. The ability to bear children versus absolute freedom from the "burden" of bearing children -- we recognize the political and subjective aspects of those perspectives.

Of course a body that can do more tricks is physically superior, better, handier to have. And for past generations and people in different locations then and now, a tricksier body has been advantageous to survival. I don't disagree with that, so far as it goes.

But often the added implication is that there can't possibly be anything good about a body with impairments, and that isn't necessarily true. I understand that this is hard for many people to accept. Maybe it helps if I accede that much of what I appreciate about my specific body and it's abilities/inabilities is related to the technology that I use.

Individual physical experience is important, so my assertions of enjoyment are limited to my own experiences, which I'll describe in a minute. But I'm not the only one. Wheelchair Dancer notes that her joy of dancing is inextricably linked to how she can make her manual wheelchair move and express what she's feeling. And she's certain this cannot be simply and completely mimicked by a nondisabled dancer using a wheelchair:

You can get a sense of how long it takes to turn in a chair, what it feels like to PUSH a chair, how to stroke, wheelie, etc. But you don't know what it means to actually live in a chair and feel it melded to you as an extension of your body or, especially, what it means to actively use the chair instead of feeling it as a prop. And this means you won't be able to move in it as we do. You won't feel comfortable in it in the same way that we do; you don't even see the texture and surfacing of the floor the same way. Our relationships to the space are different.

I'd argue that while a nondisabled body can eventually learn the dance moves so that they look the same as when a disabled wheelchair user does them, there is a psychological aspect to exercising the limits of your body's abilities -- regardless of what those limits are -- that adds emotionally to the experience. I also believe a quadriplegic can be an athlete if she is pushing the physical limits of her body and experiencing all that goes with that. If individual experience is given value, it doesn't matter with what body it's achieved.

Here's a Spanish ad with some dancing to consider. And Aaron Fotheringham's athleticism seem obvious to me here, where his moves are similar to those of skateboarders and bikers. New Disability's interview with Aaron reveals that he's used a wheelchair virtually his whole life, explaining why he makes it look effortless -- it's a natural way of moving for him (not the flipping, but using a manual chair, generally).

As I said, technology contributes to all this. Even power wheelchairs provide unique joys. When I was in college as an undergraduate, my friends and I used to play around in our wheelchairs when the campus was quiet at night. I liked to drive my scooter in tighter and tighter circles until it tilted onto only two wheels. The challenge and thrill was to pull out of the circle just in time before tipping over. Also, many of the same joys people get from driving their cars can be found driving an electric chair. There's skill to it, enjoyment of speed and mastery of a machine.

On a less athletic level, I used to have a large power chair with a tilt-in-space feature on the chair. It was a special pleasure to park anywhere on the campus quad and recline back, eyes closed to enjoy the morning sun. My portable Barkalounger and the social dispensation to do something strange like park and nap wherever I wanted were a perverse pleasure to me.

Surprisingly, I find moments of enjoyment in my ventilator and feeding tube now that I have both of them. If I exert myself doing something and get short of breath, I can simply lean back in my chair and wait until the ventilator helps me catch my breath. It's not resting in the same way a nondisabled person does after he's been working out. You might say it's lazier than that, an anti-athletic recovery that doesn't require me to do anything.

Likewise, at night, when my PEG tube is hooked up to a slow drip of liquid nutrition, there's a physical comfort to knowing my body is getting protein while I sleep. I could get the tube pulled if I wished, now. It's not absolutely required for my sustenance at this time. But it's a comforting back-up, that, along with a low cholestoral count and no concern about my gaining too much weight means that I'm curiously free of all concerns about my diet that most other women struggle with daily.

It'd be easy for a nondisabled person to say these little joys I mention are really sour grapes about what my life is missing. Or that I've stirred up a bit too much lemonade from my supply of lemons. Fruit metaphors aside, I inherited my optimism and always find that here and there life is sweet. But the point is, there are aspects of this specific, highly-flawed body that are uniquely enjoyable, and I'm not the only disabled person to make that claim.

Crossposted at Alas, A Blog
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Protesting pity

So the MDA Telethon is tonight and tomorrow. I've written here and here about the reasons a charity telethon -- particularly one that insists on using Jerry Lewis to evoke pity for disabled people -- does not help the status of disabled folks. Or, more precisely, the Telethon and the money it raises are not worth the pity.

Harriet McBryde Johnson is spending Labor Day at the 16th annual Charleston, SC, MDA Telethon protest making this point. In a press release:

Calling for an end to pity based fundraising tactics, an ad hoc group will be picketing and distributing handbills to protest the "Jerry Lewis" telethon for the Muscular Dystrophy Association on Labor Day morning. The group will be in the area of King, Meeting, and Market Streets downtown. They will gather at approximately 10 AM and be available for interviews at 11:00 AM on September 4.

"We don't want pity," says Harriet McBryde Johnson, protest organizer who has one of the neuromuscular disabilities covered by MDA. "Pity sets people apart, divides the world between those labeled as helpless and their purported superiors. We see disability as a natural part of the human continuum and believe that people with and without disabilities can and should work together to solve problems that affect us all. We want solidarity, not pity."

Among those who will attend in solidarity is Dorothy Scott, president of the Charleston Branch, NAACP. "I believe, as Martin Luther King told us, an injustice anywhere is a threat to justice everywhere. When a nationally televised telethon promotes false stereotypes, that affects everyone, because it makes our world less fair."

Street protests were galvanized by a 1990 article by telethon host Jerry Lewis that said, among other things, that if Lewis had muscular dystrophy he would have to learn how to be "half a person." Lewis stood by his remarks and dished out more of the same in the years that followed. MDA stood by him until 2001, when Lewis told a CBS reporter, "You're a cripple in the wheelchair and you don't want pity? Stay in your house!" MDA finally apologized for that one, but activists said it was too little, too late. They say MDA should replace Lewis as telethon host, stop using children on the air, and provide a full and independent accounting of the telethon as a first step toward weaning itself from the fundraising vehicle.

For more information about the controversy, go to: Crip Commentary

"On a personal level," Johnson says, "I am concerned that another generation of children should not hear the telethon message unchallenged. MDA still describes conditions like mine as 'killers of children.' I am now 49 years old, enjoying an active life I never imagined possible." Johnson practices law in Charleston. She has organized a local telethon protest for 16 consecutive years. "They are still doing what they do," she says, "so I'll keep doing this."

Mike Ervin, another protestor of the Telethon, speaks in a video clip from his half-hour documentary The Kids Are All Right about his growth from 1960s MDA poster child to disability activist. The clip requires Quicktime, which can be downloaded for free here.

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Saturday Slumgullion #9

• Poetry! DisPoet's latest entry on Sheila Black is another of the infreqent but thoughtful offerings on disability in poetry. And Penny Richards at Disability Studies, Temple U offers a very Scottish poem by Violet Kennedy-Erskine Jacob about a disabled WWI veteran.

• Ballastexistenz writes a long but brilliant critique of therapy and how it stigmatizes the individual's behavior while ignoring the politics involved. Her post relates to class, race and gender as easily as to autism, I believe. An excerpt to entice:

This is one reason I don’t fit in in support group atmospheres. I have zero interest in sitting around serenely saying “I have a great deal of anger issues over what I perceive to sort of be a return to previous ideas about something that looks a bit like eugenics” or something. And I can’t even begin to count the amount of times that someone has completely disregarded what I or someone else has to say, only to focus on the fact that we sound too “angry” — an accusation which can be brought on not only by being angry, but by talking about things that make them angry.

In the autistic community, this often takes the form of autistic people lecturing each other about social skills and the proper ways to do things. Because we’re already presumed deficient in “social skills” (which tend to mean, in these contexts, adhering to white middle-class therapy-culture social norms) it becomes easy to lecture us on the fact that nobody will ever listen to us until we communicate in a way that’s not only thoroughly unnatural to us (more so than language is already to many of us, while those who cannot use language at any particular moment are seen as even more vile in their/our means of communication), but based on an arbitrary set of social norms.

• Less serious a topic, I'm going to all my rock concerts with Leonardo DiCaprio from now on.
  

• Wheelchair Dancer ruminates on technique when dancing with a chair and nondisabled folks dancing with a chair.
  

• Operation Eden catalogs the extreme mental health problems in Katrina, one year later.
  

• A question I'm hoping someone can answer: A report on escaped Ohio inmate John Parsons recites his history of legal problems (italics mine):

Parsons was later indicted on four counts of aggravated murder; one count each of aggravated robbery, tampering with evidence and having a weapon while under disability; and two counts of grand theft.

Eh? What does this mean? Exactly what is the poor man "under"? Any ideas?

• The NYT writes on "Breaking the Biology Barrier," otherwise known as getting paid leave when adopting a child. If paid leave for childbirth is about the woman being temporarily disabled, then adopting mothers don't qualify, but if it's about adjusting to new parenthood, then they would -- and all male parents, as well.
  

• And last but never least, Ouch! Podcast #6, always silly, and including their trademark quiz "Vegetable, vegetable, or vegetable?"

Fake disabled children

A couple weeks ago the Wall Street Journal ran an article about how textbook publishers meet diversity quotas for the photos in their books. The article covers the lengths publishers go to in order to portray diversity in race, ethnicity, religion, age, gender and disability in textbook images so that their books will sell to diversity-sensitive school districts. But when it comes to portrayals of disabled people, nondisabled children are frequently placed in wheelchairs or given crutches to stand in for actual disabled models.

[Photographer] Ms. Coppola estimates that at least three-fourths of the children portrayed as disabled in Houghton Mifflin textbooks actually aren't. "It's extremely difficult to find a disabled kid who's willing and able to model," she says. Houghton Mifflin, which acknowledges the practice, says it doesn't keep such statistics.

Houghton Mifflin's little-known stratagem illustrates how a well-intentioned effort to make classroom textbooks more reflective of the country's diversity has led publishers to overcompensate and at times replace one artificial vision of reality with another.

Well, I don't know why disabled children would be less willing or able to model and make money. It's unlikely that the problem is caused by a particular minority group being unwilling to model and be represented. Much more likely, talent agencies are not interested in disabled children (and adults) and do not accept them as clients. That's no doubt a result of discrimination at talent agencies (which mirror the Hollywood/high fashion aesthetic) where the concept of diversity is not yet thought to include disabled persons, and disabled children that look like they have impairments would be unlikely to be hired unless the agencies completely change their aesthetic of who makes a good model. And, of course, the book publishers have decided that the appearance of diversity is a good enough representation of actual diversity.

This prejudice that manipulates the reality of what disabled children look like is just the tip of the iceberg. It goes without saying that children with hidden disabilities (that may nevertheless alter their appearance in subtle ways) are not represented in photos -- are they mentioned in the captions or text? Do the rented wheelchairs and other equipment look like what modern disabled children actually use? Do they rent, say, non-stereotypical equipment that disabled people regularly need, or just the easy symbols of disability -- crutches, wheelchairs, white canes? Are developmentally disabled children represented at all? Are the fake disabled children ever played by non-white boys and girls? What must black or hispanic or asian children look like to satisfy their diversity requirements? Does a blond hispanic girl qualify as hispanic or would she never be hired to represent her people either? How girlish does a girl have to be?

The WSJ article, headlined "Aiming for Diversity, Textbooks Overshoot: Publishers use quotas in images to win contracts in big states, but they may be creating new stereotypes," is mainly cast as a subtle critique of diversity and the standards educational systems have used to try and support diversity:

In 2004, according to federal estimates, non-Hispanic whites made up 67.4% of the U.S. population and 59.9% of the school-age population.

Under McGraw-Hill Co. guidelines for elementary and high school texts, 40% of people depicted should be white, 30% Hispanic, 20% African-American, 7% Asian and 3% Native American, says Thomas Stanton, a spokesman for the publisher. Of the total, 5% should be disabled, and 5% over the age of 55. Elementary texts from the Harcourt Education unit of Reed Elsevier PLC should show about 50% whites, 22% African-Americans, 20% Hispanics, 5% Asians and 5% Native Americans. Of the total, 3% should be disabled, says Harcourt spokesman Richard Blake.

The publishers' guidelines are closer to the race statistics of California than the federal estimates, reflecting the markets for their sales, which are urban areas of big states like California, Texas and Florida. But the publishers' guidelines do not come close to accurately portraying the disabled as the estimated "one in 12 children" or 10% of all Americans that the 2000 Census indicated.

It's true that not all disabled children's traits identifying them as disabled can be captured in a picture. This is especially true for the various learning disabilities that have caused the number of children identified as disabled to climb in the past decade. Yet, the educational point of incorporating diversity into elementary school textbooks is to teach about the world as it exists for the children reading these books and to offer them images that look like them.

For disabled children, there is almost nowhere in mainstream public for them to see disabled folks portrayed as they actually exist. In Hollywood, the plum Oscar-contending roles for the highest-paid actors are for nondisabled actors, with portrayal of disability being part of what gets the applause. The "realism" of Hilary Swank in Million Dollar Baby, for example, is what gets attention as being truthful about disability.

When was the last time you saw a disabled person on TV who drooled, or needed a personal attendant, or used a power wheelchair and had a schlumpy body because that's why people need power chairs? Perhaps in the inspirational story on the local news, but not with the diversity of regular characters slowly becoming otherwise more representative of our world on TV dramas like Grey's Anatomy or 24 or Lost.

With fake disabled children the accepted practice in textbook photos, another opportunity to show what we really look like is not only lost, but distorted. Real disabled people, when they do appear in public, become less attractive, abnormal versions of the disabled people we have learned to look at, in the same way that fat women have become the less attractive, abnormal versions of women because we've all seen the ideal skinny women everywhere so often she's become the accepted fake. It's little wonder the result of this switcheroo is the nondisabled stare all visibly disabled folks are familiar with as part of their public experiences. That stare is blatant curiosity and even astonishment, and efforts at diversity in textbooks will only reinforce it.

Crossposted at Alas, A Blog
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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