Tuesday, August 30, 2005

Disability History Image #3

This photo is found in Esther Lanigan's Mary Austin: Song of a Maverick (Yale University Press 1989). It's a photo of Ruth Austin (1892-1918), writer Mary Austin's daughter, taken in Santa Clara, CA, just before she was placed in a "nervous hospital" in that same town, in 1904. There is at least one other image from this photo session, at the Huntington Library (Austin Papers), showing Ruth looking off-camera to the viewer's right.

AutismDiva has posted a some historical portraits recently (Someone's Cousin Moe, Antique Autistics), in the interest of combating the widespread belief that autism was somehow "new" in the late 20th century. In the case of Ruth Austin, we have a glimpse of how her behavioral characteristics appeared to Helen MacKnight Doyle, a physician friend of Austin's, years before Ruth was institutionalized. She described the "beautiful" child's "restless uncertain movements of her small hands," "strange sounds," and "passionate, ungovernable spells." It seems likely that she would have an autism diagnosis today. At the time, she was most often labeled "hopeless."

Ruth Austin was placed in Dr. Antrim Osborne's small Santa Clara hospital in 1904. According to the 1910 US Manuscript Census returns, the hospital had nine on-site staff members (including Osborne and his wife, two nurses, a teacher, a waitress, a housekeeper, a male attendant, and a cook--the cook was Chinese-born, all the rest were born in the eastern US). Ruth was, in 1910, one of 22 inmates, all white, male and female, mostly US born and under 40. Five of the inmates under 18, including Ruth Austin, are listed as having attended school in the preceding year.

Mary Austin never visited her daughter at the Osborne hospital, as medical advice in the day said parents would interfere with their child's treatment in such institutions. In fall 1918, Ruth Austin died in the worldwide influenza epidemic, at the age of 26.

Cites: I haven't published anything directly about Ruth Austin, but I have a book chapter out there that touches on her story: "Bad Blood and Lost Borders: Eugenic Ambivalence in Mary Austin's Short Fiction," in Lois A. Cuddy and Claire Roche, eds., Evolution and Eugenics in American Literature and Culture, 1880-1940 (Bucknell University Press 2003). Dr. Antrim E. Osborne is mentioned and quoted in James W. Trent Jr.'s Inventing the Feeble Mind: A History of Mental Retardation in the United States (University of California Press 1994): 83, 90-91. Helen MacKnight Doyle's biography of Mary Austin is Mary Austin: Woman of Genius (Gotham House 1939).

Monday, August 29, 2005

Drivers' Licenses for Motorized Wheelchairs?

I almost checked the date to be sure it wasn't 1 April when I read this story from Bristol (UK). As the author comments, "And what next? Perhaps they'll suggest we should go back a century and have someone waving a red flag as the motor wheelchair travels down the road."

Friday, August 26, 2005

Accessibility competition

The headline of this Lawrence Journal-World story, "KU teams take top spots in national disability contest," is a bit puzzling--what's a disability contest?--but it turns out to be a story about "Access to Fun," a competition in which teams of engineering students at various universities were challenged to design amusement park rides with accessibility in mind. First, second, and third place in the competition were won by teams from the University of Kansas School of Engineering. Here's a press release about "Access to Fun" from one of the competition's co-sponsors, the International Association of Amusement Parks and Attractions.

Should Kirsten Johnson be allowed to have kids?

BY KATIE WATSON, August 21, 2005

Vera Howse thinks her 26-year-old niece Kirsten Johnson wouldn't be a good mother, so she's asked the Cook County Probate Court for authorization to sterilize her niece against her will. Johnson is cognitively impaired, and her aunt is her legal guardian.

This case has broad significance because Illinois, unlike other states, hasn't established when a court should grant a guardian authority to have a ward permanently sterilized.

Most cases like this are resolved in the doctor's office. Physicians at one Chicago hospital system estimate that it receives one to three guardian requests to sterilize their wards per month, usually from parents of disabled adolescents. After counseling, most eventually opt instead for long-term reversible birth control.

But in this case Howse continued to insist that her niece be sterilized permanently, and her internist and psychiatrist did not object. Johnson countered by contacting Equip for Equality, a disability rights organization that represented her in court. Johnson, who lives with her aunt in south suburban Matteson, is sexually active. She has always used birth control (her aunt currently helps her use the patch), but says if she were to marry a man who could help her parent someday, she would like to have a child.

Historically speaking, Johnson's situation isn't unique. State programs forced up to 70,000 disabled and poor Americans to be sterilized between the early 1900s and the 1970s. These programs, now ended, were driven by a belief that social eugenics would both "improve the gene pool" and save the taxpayers money by reducing the number of children born to parents who couldn't support them.

The courts were no help. In Virginia, for example, the Lynchburg Colony for the Epileptic and Feeble Minded, which sterilized 8,300 people from 1927 to 1972, was a model of empty due process. The disabled and poor teens forcibly brought to the institution were given a perfunctory hearing, after which a judge would always find it was in the "best interests" of the patient and society that the ward not reproduce. In 1927 the Supreme Court upheld this Virginia statute in the case of Buck v. Bell.

Six years later, the Nazi regime in Germany modeled its new eugenic program on U.S. sterilization statutes. They began with the sterilization of disabled individuals in 1933, later executing thousands of persons with disabilities and millions from other "unfit" populations.
Whose 'best interest'?

But things are different now, right? States have formally apologized for their eugenics programs, the Americans with Disabilities Act ushered in a new era of accommodation and respect, and the disabled person's right to medical self-determination is implemented by his or her guardian, who is usually a family member concerned with the disabled person's "best interests." At least that's the standard Illinois law tells guardians to use.

The problem is that childbearing is one decision in which what's best for the ward and what's best for the guardian might conflict. While some cognitively impaired people might enjoy parenthood, their guardians may fear a new baby will become the guardian's responsibility. Or, in the case of congenital disability, guardians may fear the ward will "pass on their genes" and bear another disabled family member. Ironically, these criteria -- resources and eugenics -- are exactly those used by the now-discredited state programs.

What standard should Illinois courts use to resolve cases like Johnson's? To be blunt, families give up a lot to care for a cognitively impaired child. Is it so wrong to ask the disabled individual to give up the right have children in return? Might this be a fair exchange?

Absolutely not. The law says no person's reproductive options are contingent on the needs, desires or judgment of another. Why should persons with disabilities be the exception? No parent is allowed to control whether their child bears a grandchild, even when they're a minor (legally "incompetent").

Wives can give birth and have abortions against their husband's wishes. And the Supreme Court has ruled that criminals can't be sterilized as part of their punishment.

Reproductive freedom holds such a cherished place in our society that even the welfare of the potential child does not trump it. The state cannot prevent an abusive, drug-addicted person who has lost eight children to foster care from procreating.

But Judge James Riley sees this case differently. In his Aug. 11 decision, he ruled that it is in Kirsten's best interest 'to have a permanent form of birth control. Why? Because several people testified that she would not be able to care for a child alone.

This sounds like a "parental litmus test" to me. I'm not applauding irresponsible parenting, but making people with disabilities the only group in America that must prove they'll be good parents before they are "allowed" to reproduce is intolerable discrimination.

The second reason Riley gave for his decision was Johnson "would suffer irreparable psychological damage" if she had a child and the child was removed from her because of her inability to care for that child.

She can read, not drive
No one, including Johnson, disputes she'd need training and support to be a good parent. She's high functioning in some ways, but her IQ is in the borderline to low average range. She can dress, bathe and feed herself, but she can't drive. She can read, but she can't handle financial affairs, and she needs some assistance with household chores. But information and services for disabled parents is available at places like Community Support Services. Parenting support for the cognitively impaired is like ramps for those in wheelchairs -- small modifications that ensure the only limitations are those caused by disability itself, not our society's response to it.

This case highlights the deep chasm that separates the able-bodied from the disabled. To prove it, try a thought experiment: Who in this essay have you identified with so far? I know I imagine myself in the position of the well-intentioned, overwhelmed guardian. If I stretch, I can imagine what it might be like to be raised by a cognitively impaired mother. Both sound hard.

But it's telling that I don't imagine myself in the shoes of the disabled person. It's also foolish. Johnson's brain was injured in childhood when she was hit by a car, something that could happen to me tomorrow. And if it did, I'd want to live my life to its fullest. I'd want "the dignity of risk" -- the option to try difficult things and live with the consequences -- and the support I'd need to maximize my potential and happiness. That's my "living will" for the social care I'd want after an accident.

Johnson's case isn't over. Riley has ordered that Johnson be evaluated to see whether she's a medical candidate for Implanon (the new Norplant) or an IUD that last 5 or 10 years, and he deferred to January his final ruling on Ms. Howse's petition for tubal ligation.

In this precedent-setting case, Riley says he's following a Pennsylvania court that adopted a "discretionary best interest standard." But his application of the specified best interest criteria is misguided and incomplete, because the standard the Pennsylvania court used is intended to focus the court on what's best for the person with a disability, and away from the best interest of the guardian, family, society or potential children.

Persons with disabilities in Illinois deserve better than this. Tubal ligation is a safe, effective form of contraception many women -- including some with cognitive deficits -- freely choose. But allowing guardians to permanently block their ward's reproductive desires with the muscle of the courts and the knife of medicine is a discriminatory step back toward a shameful era to which we should never return.

Katie Watson is lawyer and a lecturer in the Medical Humanities and Bioethics Program of Northwestern University's Feinberg School of Medicine.

Autistic boy, 5, dies after US therapy

August 26, 2005

The Times

Autistic boy, 5, dies after US therapy
By Lewis Smith

AN AUTISTIC child who travelled from Britain to the US to undergo a controversial form of alternative therapy has died after treatment.

The US authorities have begun an investigation into the death of Abubakar Nadama, 5, who lived in Batheaston, Somerset.

He underwent three rounds of chelation therapy at the Advanced Integrative Medicine Centre in Pittsburgh, Pennsylvania, at which point his heart stopped, according to Deputy Coroner Larry Barr.

Staff at the centre tried to resuscitate him but he was pronounced dead.

More tests will be carried out to determine the precise cause of his death.

Marwa Nadama, the boy’s mother, said that she did not hold the therapy responsible for her son’s death.

Rufai Nadama, the boy’s father, who works at the Plymouth Hospitals NHS Trust as a specialist registrar in respiratory medicine, remained at work in Britain while his son, wife and 11-year-old daughter moved to the US so that Abubakar could receive the treatment. He has flown to America to be with his family.

Neighbours in Britain said that Abubakar’s parents were determined to do anything they could to improve their boy’s condition. Carers visited the family in Batheaston three times a day and his diet was strictly controlled in an attempt to reduce the severity of his autism.

Some believe that autism can be linked to a mercury-containing preservative that was once commonly used in childhood vaccines. Chelation therapy involves injections of ethylene diamine tetra-acetic acid, a synthetic amino acid which acts by sticking to heavy metals that are then flushed out of the body in the urine.

The treatment has been available in the US for several decades and if Abubakar’s death was directly caused by chelation therapy it will be the first such fatality since the 1950s.

The US Food and Drug Administration has approved chelation only for acute heavy-metal poisoning that has been confirmed by blood tests.

Critics maintain that there is too little evidence to link autism to mercury or lead toxicity.

Howard Carpenter, the executive director of the Advisory Board on Autism-Related Disorders, said that it was just a matter of time before there would be a death linked to the therapy. “Parents of children with autism are desperate. Some are willing to try anything,” he said.

Autism, a neurological disorder in which sufferers have difficulty in communicating, socialising and empathising, has no known cure, at least according to mainstream medical opinion.

The first signs of the condition can become apparent within a few months of birth, but is more usually diagnosed when a child is three or four.

In Britain the condition was tentatively linked with the measles, mumps and rubella vaccine (MMR) in the 1990s, causing widespread concern among parents.

The research that prompted the link has since been discounted and a succession of large-scale research projects has failed to establish a link between MMR and autism.

Nevertheless, some parents remain concerned enough that they refuse to allow their children the MMR vaccine, which has in turn caused an increase in measles outbreaks.

A post-mortem examination on Abubakar proved inconclusive yesterday and it could be several months before investigations into the cause of his death are completed.

Gary Swanson, a child psychiatrist at Allegheny General Hospital in Pittsbugh, who works with autism patients, said of the treatment: “I can’t sit there and endorse it as a viable treatment. It’s not something published in peer review journals and studies.”

Unofficial estimates suggest that in 2000 only a dozen autistic children were treated with chelation therapy but that the figure has now risen to 10,000.

# Chelation therapy This aims to rid the body of heavy metals such as mercury, which some believe can cause autism

# The Hanen Programme Training for parents and carers to help children to develop language, social and literacy skills

# Auditory Integration Training Claims that autism involves anomalies of auditory perception. Relaxes with filtered sound or music in a controlled environment

# Applied Behaviour Analysis Intensive teaching method aimed at the child’s level of functioning

Tuesday, August 23, 2005

Disability History Image #2

This week's image is a photo of "Señor Donato," a one-legged dancer popular in England in the 1860s. According to a report at the time, from The London Review of Politics, Society, Literature, Art & Science, Saturday, 7 January 1865, p.12a/b, quoted here (which is also where I found the picture):
Much has been written about Donato's dancing, but the most we can say of it is that it enables him to conceal his physical defect. He is a small, good-looking young Spaniard, dressed in a gay crimson velvet dress, a good timist, a good player on the castanets, and a very clever twirler of a cloak, which he uses in what is called a mantle dance. In this dance he spins round with considerable rapidity in the centre of a spiral column formed by the cloak. The leg he has lost is the right one; and the steps he is able to perform with the left leg are necessarily very limited, but he moves from place to place with great ease, and relies much upon that very graceful and incessant motion of the body which is one of the chief characteristics of Spanish dancing. His performance is very ingenious, and is not so painful to look at as we expected it would be. Of course we can have nothing to say in favour of such exhibitions at a first-class theatre.
But Señor Donato didn't have the one-legged dancer niche to himself, even in the "first-class theatre"; in fact, the niche was occupied by quite a few acts, for decades. This 1924 article from London Life mentions not only Donato, but an unnamed Frenchwoman, "pirouetting with wonderful ease and effortlessness, entirely unsupported save by her single slim leg and foot"; "Nimble Jack Joyce," an American WWI veteran popular in the early 1920s; "The Merry Monopedes," who were two men, both with one leg, "acrobats and jumpers" more than actual dancers; the Bistrews, a pair of French WWI veterans; a German woman with a water-ballet act, called the "Living Mermaid," and a further two-man team, calling themselves "the Donatos," no doubt after the subject of our Disability History Image this week.

More? Clayton "Peg-Leg" Bates (1907-1998) was a popular dancer at Harlem's Cotton Club and in Atlantic City, toured Australia with Louis Armstrong, played Carnegie Hall with Count Basie, was the first African-American performer on the Ed Sullivan Show, and in 1952 opened his own country club in the Catskills. "Crip" Heard was featured in a musical "race movie," Boarding House Blues (1948, available on DVD). Among present-day acts involving dancers using one leg/foot: Five Foot Feat, and the Tamil film actor/dancer Kutty, star of "Dancer."

(UPDATE 11/6/11: All the links in the last pgh were bad, so I've replaced them with good links.--PLR)

Sunday, August 21, 2005

Julia Darling (1956-2005)

"Poetry should be part of every modern hospital, and not just something to keep patients amused. It's a powerful force, which can help us through the darkest times."--Julia Darling

Today would have been the 49th birthday of English writer Julia Darling--but she died earlier this year, in April, after ten years with breast cancer. She was nominated for a Booker and an Orange Prize for her novels. DS,TU readers may be most interested in her later poetry and essays, which focused on the experience of illness, with titles like "How to Deal with Terrible News," "My Joints are Rusty Cranes," "Sudden Collapses in Public Places," and "Too Heavy," "Injection," "Waiting Room in August," and "Days of Terrible Tiredness," all available online. Darling was also a blogger, and her site (maintained by her partner Bev Robinson) is full of links to other material about her.

Saturday, August 20, 2005

Don't laugh?

Theatre management question: Kids are laughing at a summertime matinee showing of a G-rated movie. Which one do you eject, with his whole family, for "laughing too loud"? Extra credit: when the story hits the news, sing one more refrain of that ever-popular corporate non-apology (repeat after me, we all know the words): "We may not have exercised the best sensitivity in handling this situation."

Update: I spent a lot of time cleaning up the comment spam on this post. Folks who wish to comment now will have to use word verification. We realize that this may pose difficulties to users with vision impairments, and hope that advocacy with Blogger will improve this utility over time. To see a discussion of the downside of this method of preventing comment spam, see the discussion on Diary of a Goldfish.

Friday, August 19, 2005

Porter v. Manhattan Beach Unified School District

A local six-year special education suit has finally reached a settlement. The Manhattan Beach (CA) Unified School District and the California Department of Education have agreed to pay a total of $6.7 million, believed to be a record settlement in a special education case. The law firm representing the plaintiff has posted a press release, dated 8/18; today's LA Times story is also online. Said Deb Porter, the student's mother: "No amount of money can compensate for the school district's deliberate failure to provide an appropriate education at a crucial point in our son's life." When the suit began, her son was 11; now he's 17.

Amended to add: Here's the Wrightslaw alert about this settlement.

Thursday, August 18, 2005

Disability History Timeline

Have a peek at the Disability History Timeline just mounted online by San Francisco State University's Institute on Disability. It's searchable, and intended as a teaching/learning resource. They're actively seeking suggestions for additions--so go check your favorite eras and fill in some dates. (There's a special plea for more non-US items for the timeline.) I've contributed a few already, myself, drawn from the H-Disability archives.

Here we go again...

It seems like an annual thing. This year's version: a Napoleon Dynamite talking pen that says (as one of seven sayings in rotation) "You guys are retarded," marketed as just in time for back to school shopping at Target and elsewhere. At this website, they're recommended as the "perfect gift for any student." Lovely. That'll help so much with inclusion, thanks. (Gail Williamson at the Down Syndrome Association of Los Angeles is already ginning up the letterwriting campaign via email, but it's not yet on their website as I type this.)

Monday, August 15, 2005

Disability History Image, #1

I've got a file on my desktop of disability history images, and it occurs to me that they might be something to share here, once a week or so (now that I know how to post images to a blog). They're a pretty random lot, as you'll see from this first one. It's from a Time/Life volume, titled The Northwest Passage by Brendan Lehane (Time-Life 1981), from a series called "The Seafarers." The caption tells the tale:

"Tulluahiu, who lost a leg during an encounter with a polar bear, wears a wooden limb fashioned for him by the carpenter of the Victory. The artificial leg rendered Tulluahiu 'serviceable once more to himself and his community,' noted Ross, and 'raised us higher in the estimation of this people than all the wonders we had shown them.'" (125)

The illustration is a watercolor by Captain John Ross, whose ship (the Victory) and its crew became trapped in ice on the coast of the Boothia Peninsula (the northernmost tip of the North American mainland) in 1829. The volume's picture credits say the originals are at the Scott Polar Research Institute in Cambridge, England.

There's a recent book on the Ross expedition's time on the Boothia Peninsula: Ray Edinger, Fury Beach: The Four-Year Odyssey of Captain John Ross and the Victory (New York: Berkley 2003). It's reviewed here.

Saturday, August 13, 2005

Nineteenth-Century Teachers with Disabilities

Two examples: one from a biography of Letitia Landon, born August 14, 1802:
"Miss Landon received the first rudiments of education from an invalid friend and neighbor, who was wont to throw the letters of the alphabet over the carpet, and on the infant scholar bringing to her the right one, she received some trivial reward, which, on her return home, was displayed in the drawing room, and invariably shared with her brother, who consequently was wont to look very earnestly for the hour of her appearance."

And another, Isaac Copper, described in Frederick Douglass's autobiography:
"...he was called Doctor Copper. He was both our Doctor of Medicine and our Doctor of Divinity. Where he took his degree I am unable to say, but he was too well established in his profession to permit question as to his native skill, or attainments. One qualification he certainly had. He was a confirmed cripple, wholly unable to work, and was worth nothing for sale in the market. Though lame, he was no sluggard. He made his crutches do him good service, and was always on the alert looking up the sick, and such as were supposed to need his aid and counsel....I was early sent to Doctor Isaac Copper, with twenty or thirty other children, to learn the Lord's prayer. The old man was seated on a huge three-legged oaken stool, armed with several large hickory switches, and from the point where he sat, lame as he was, he could reach every boy in the room."
Douglass goes on to explain that "Everybody in the South seemed to want the privilege of whipping somebody else. Uncle Isaac, though a good old man, shared the common passion of his time and country."

These examples floating across my screen brought to mind the book The Teacher's Body: Embodiment, Authority, and Identity in the Academy, eds. Diane P Freedman, Martha Stoddard Holmes, Rosemarie Garland-Thomson, and Madeleine R. Grumet (SUNY Press 2003). (But that's mainly about the present-day, higher ed context.)

Thursday, August 11, 2005

Appeal: Universal Design and Visitability Curriculum

This summer, I began consulting with an NSF-funded summer enrichment program for high school students based at Temple University called bITS (Building Information Technology Skills), wher I am introducing concepts of Universal Design and Visitability to the students.

My colleague Carol Marfisi informs me that several years ago the former chair of the Mayor's Commmission on People with Disabilities (Philadelphia) was involved in an innovative program for high school students that sent groups of students out to different neighborhoods around the city and challenged them to document the accessibility of these environments. They were provided with important tools such as odometers, and knowledge gained through this project must be invaluable. I would be interested in contacting some of the leaders of this or similar projects.

Dear readers! Do you know the names the teachers or the schools that were involved in this or similar projects? Are there any reports, papers or other media that documente this work? Are there collections of images or videos/DVDs that you recommend as training resources for my students? I am already aware of the materials made available by Eleanor Smith at Concrete Change. But I am sure there is more out there.

I hope to develop a community-based project that the students can get involved in this fall. Basic information on the program can be found at this site, http://bits.delawarevalley.org/ I look forward to helpful insights from the posts and ensuing conversations.

Sincerely, Mike

Monday, August 08, 2005

Simi Linton promotes DS in the Village Voice

Village Voice Education Supplement, Fall 2005
August 2nd, 2005 12:52 PM printer friendly

Body Politics
The wheel world: Is disability studies academia's next frontier?
by Rebecca Tuhus-Dubrow

Activist Simi Linton: “Disability studies is us looking out at the world and seeing how that looks to us.” photo: Ruth Morgan

Lest America divide too neatly into red/blue, NASCAR/latte blocs, one constituency can be counted on to muck up the dichotomy. People with disabilities defy political pigeonholing. The group considers itself an oppressed minority, and its civil rights agenda grew out of 1960s radicalism. But on issues such as euthanasia, disabled people find themselves allied with "culture of life" enthusiasts. As disability activist Simi Linton says, "A lot of disabled people justifiably feel vulnerable to ideas held by their family and the medical establishment that our lives are less valuable. . . . That is why I'm categorically opposed to physician- assisted suicide, because I think some people are more likely to be assisted than others." For secularists, this argument is a bit harder to dismiss than "because God said so."

Now disabled people have gotten into the business of problematizing: Disability studies has arrived in academia. Of course, the medical study of disability is long-standing, but the new approach establishes an interdisciplinary field on the model of women's, queer, and ethnic studies. Linton, author of the upcoming My Body Politic (Michigan), explains: "The curriculum had traditionally housed disability in a very sequestered area—how to fix people and take care of them. Disability studies is us looking out at the world and seeing how that looks to us." It also critiques "how disability is represented in all kinds of texts—in literature, film, the annals of history."

The Society for Disability Studies (SDS) was founded in 1982, with an emphasis on social science. In the early 1990s, scholars working independently in the humanities began to discover each other's work at SDS conferences. Linton, whose legs were paralyzed in a car accident in 1971, describes these conferences as "quite chaotic. You've got 50 people who use wheelchairs, you've got blind people with dogs, you've got deaf people with interpreters. . . . And we all sort of move to accommodate each other. It's a powerful experience for outsiders coming in for the first time."

Today, Syracuse, UC Berkeley, UCLA, the University of Wisconsin, and others offer programs in the field. Locally, the CUNY Graduate Center launched a certificate program last fall, consisting of four courses on the cultural and political aspects of disability, which can lead to various degrees. For the past two years, Columbia has hosted a monthly seminar for area faculty and grad students. Organized by Linton and colleagues, its topics range from disability in late capitalism to the intersection of disability and queer studies. Just last May, the field was officially recognized as a division by the Modern Language Association (MLA).

Disability scholars aim to revolutionize the way disability is imagined in our culture. Rather than pathologizing individuals, they ask how society accommodates different bodies (or doesn't). Disability, they point out, highlights the dynamic nature of identity itself: Entry into the disabled community could be a matter of an overlooked stop sign or the emergence of a lurking gene.

Anyone who's taken a women's studies class or read Edward Said will be familiar with the terms of the field. The study of disability, like that of gender, race, and sexual orientation, is rooted in bodies perceived as "other." All of these disciplines use the language of critical theory—Foucault, with his interrogations of power, the body, and pathology, is big in disability studies. And these related fields can cross-pollinate. Rosemarie Garland-Thomson, who teaches in the women's studies department at Emory University, promotes the integration of feminist and disability studies. Her scholarship reveals unsettling parallels: Women have often been conflated with the disabled, beginning with Aristotle's representation of women as mutilated men.

Disability studies may sound esoteric, but it grapples with concerns any eighth-grader can relate to. The pressure to be normal is a major theme of the research. As Garland-Thomson has written, "[T]he cultural function of the disabled figure is to act as a synecdoche for all forms that culture deems non-normative." Disability discourse often touches on bodies that stray from the norm—"freaks," but also people considered fat, ugly, or funny looking.

Although disability has fruitfully integrated with other identity studies, the field has not always received a warm welcome. Alison Kafer, who teaches feminist and disability studies at Southwestern University, attributes resistance in part to funding, but on a deeper level, she notes that "women and queers and people of color have often been cast as sick. That's how discrimination was justified." Now those minorities are saying, "You know what—we're not sick," and they shun association with people still seen as defective. The ambivalence is mutual; some disability scholars want to jump from what they see as the sinking ship of identity studies. As University of Illinois at Chicago's Lennard J. Davis pointed out in a 2004 conference paper, "We are in a twilight of the gods of identity politics, and there is no Richard Wagner to make that crepuscular moment seem nostalgic and tragic." So disability studies has arrived, but is it too late?

Despite the falling currency of identity studies, the field's institutional gains are clear, if modest. But institutionalization may not be the primary goal. As Garland-Thomson says, "We don't necessarily need people majoring or minoring in disability studies. We need to create a system in which educated people have it as a category of understanding." She observes that many canonical literary works have a neglected disability aspect: Ahab in Moby Dick is an amputee, Shakespeare's Richard III is a hunchback, and several of Toni Morrison's characters are disabled as well as black and female. "You wouldn't have to teach a class called 'Disability and Literature,' " she says. In studying literature—or any subject—disability is simply an additional lens at our disposal. In literature, Garland-Thomson has found, disability is typically reduced to a metaphor, shorthand for strangeness.

Exciting scholarship is being generated. Last March's issue of the PMLA (the MLA's publication) featured papers from a recent MLA conference, including "Deaf, She Wrote: Mapping Deaf Women's Autobiography" and "Crip Eye for the Normate Guy: Queer Theory and the Disciplining of Disability Studies." One item on the field's agenda is to welcome cognitive disabilities into the fold. SDS continues to hold annual conferences as well. "I come back from SDS so excited," says Linton. "My colleagues are the smartest people I've met, ever."

Sunday, August 07, 2005

Disability Blogs: A Roundup

Lots of topics coming up around the disability blogs... just a roundup of a few:

Others link to "Deafness in Disguise," the recent online exhibit about the history of hearing devices, but Mary Johnson goes farther, asking why glasses became no big deal, even cool in some ways, while hearing aids never have, and seem to require "disguise." She also, perceptively, critiques the advertising for laser eye surgery that tries to reinstall shame/annoyance about wearing glasses where there isn't much to start with.

Programs serving people with disabilities are shutting down all over the US. Some you'll hear a more about, like the Tennessee case reported here and elsewhere; but others, not so much. Two examples: Charmenders at Quiescent Voices noted that domestic violence survivors who are Deaf will soon have fewer options in Austin TX, when the DAWCAS (Deaf Abused Women and Children Advocacy Services) reduces its services for lack of funding. (Their federal "Victims of Crime Act" funds are being discontinued.) Madeleine Gomez Schwartz at DNNYC (a yahoogroup with an RSS feed) posted that "the External Education Program for the Homebound in Queensborough Community College is closing at the end of this month."

Sanford Hausler's FAPE Page caught the story of how Los Angeles Unified School District has "completed only a tiny percentage of renovation projects" designed to make its buildings more accessible for students with disabilities; and they're also dealing with continuing racial disparities in special education, as are the districts in Montgomery and Anne Arundel Counties in Maryland, as noted on the Disability Law blog and The Gimp Parade. The Gimp Parade also picked up on the Village Voice article about disability studies "mucking up the dichotomy"--which sounds like a bumper sticker: "Disability Studies: Mucking up the Dichotomies."

Scott Rains has details about two upcoming Universal Design conferences, in Santa Cruz CA (August 19, focus on urban infrastructure) and Woodbridge VA (September 28, focus on single-family dwellings), and suggests that a midwestern conference would also be nice to see...maybe with a focus on hotel/motel/hospitality projects. Christiane Link is questioning her German bank's strategy for advertising accident insurance. And Kim Luty has tips on buying adapted vehicles.

What are folks reading, or trying to read, or listening to? Scott Laurent at Disability is an Art has been reading The Diving Bell and the Butterfly. Meanwhile,
Kestrell is looking for a copy of Martin Caidin's book Cyborg to scan, and musing on bionic men, women and dogs in the context of prostheses. And David Facheux explains Swamp Pop in an audio post at Blind Chance.

I'll try to do these roundups every month or so. Got ideas about what should be included? Let me know!