Cerrie Burnell's Arm, Part 2

Wow, so two years after I first wrote about this, Cerrie Burnell's arm is still a matter of controversy? Maybe because I'm also reading Sue Schweik's The Ugly Laws right now, it seems amazing that in 2011 we're still anxious about the sight of an arm that doesn't end in a hand. For recent blogging about Cerrie Burnell's story, see Planet of the Blind and Bess's The Right to Design, among others.

I had just finished reading (and retweeting) that last link when my daughter's newest issue of American Girl magazine arrived in the mail. [visual description: girl holding a magazine open, with the story "Lizzy's Ride" visible; one page is a large photograph of a girl in equestrian gear, riding a pony, with her arms raised; one arm ends above the elbow]

"Lizzy's Ride" is a six-page first-person story about a Pennsylvania girl who rides ponies in competition. Lizzy says "I was born with only one hand. It might seem like that would be a big deal, but it's really not." The story isn't about her arm, it's about her ponies and how she cares for them on her family's farm. (There's video of Lizzy riding on the American Girl website.) But clearly, the editors at AG don't think that such things should be kept under wraps, either.

Road Trip: DisTHIS, New York!

[Image description: Sitting casually in director's chairs in front of the screen in the Firehouse's third floor screening room, are Mat Fraser and Lawrence Carter Long. Sitting between them in her own wheelchair is Liz Carr.]

Melania Moscoso and Mike Dorn traveled up to New York last Wednesday to check out the disTHIS! 2nd Anniversary Criptastic Celebration. The evening included a little bit for everyone, including some salacious film shorts (featuring special guests Mat Frazer and Liz Carr from the BBC Ouch! Podcast) and the East Coast debut of Bård Breien's "The Art of Negative Thinking." The Norwegian director's feature film debut is the story of Geirr, his girlfriend Ingvild, and their encounter with the "municipal positivity group" [must be a Norwegian thing!] Geirr has remained reclusive and bitter since his accident, turning to his heavy metal music for relief, and Ingvild is willing to try anything to break him out of his despond. But as it turns out, the positivity group and their leader have their own issues to work through. And Geirr is just the one to help them learn the negative arts.

Lawrence Carter Long organizes the events for the Disabilities Network of NYC and takes particular care - reviewing new film for works of interest. The audience has come to expect works that work creatively against the standard conventions of disability in film. Even works deriving inspiration from the "freak show" canon are considered, as long as they work to reinvent this time-tested genre. International films that lend insight into contrasting cultural frameworks (such as the Spanish films that Melania has been reviewing) are also very popular. We can't wait to see what Lawrence selects for this coming Halloween!

[Image description: Melania and another audience member listening in on the post-screening discussion.]

It was an easy and fun trip. Several busses a day run between between Philadelphia and New York. Over the years I've taken one of the various "Chinatown buses" several times, picking it up at the Greyhound bus terminal near the Convention Center in Philadelphia, and catching the return bus from the north side of the Manhattan Bridge abutment. But today Melania and I checked out a new alternative, the cheaper and more relaxing and accessible Bolt Bus, that leaves from 30th Street between Walnut and Market in West Philadelphia, and delivers the traveler at 6th Street between Canal and Grand in Soho. Arriving early (due to the Bolt Bus's limited schedule) we had a chance to check out some of the local sights, including the beautiful and fully accessible Mulberry Street Branch Library (another view) at 10 Jersey Street [Between Lafayette & Mulberry Streets].

Visit their website to learn more about the disTHIS! Film Series and plan your next trip to New York. Sign up on Yahoo for regular email updates, or "friend" them in MySpace. There are some exciting events being planned in conjunction with the upcoming meeting of the Society for Disability Studies, June 18 - 21 at Baruch College, the City University of New York, so stay tuned!

Sunday paper tells the right story

So I looked at the front page of the LA Times today, and said, "Hey, I know them!" David Denney was a classmate of my son's a few years ago; I remember that his mother Amparo always worked for the best in their classroom. She's a great advocate for David. Their family was featured in a front-page feature story in the LA Times--but I was glad to see it wasn't the usual horrid cliched "what a burden, what saints" story about the family of a disabled kid.

Instead, this is a story about an insurance company's decision to deny the home nursing David requires, nursing that it had previously covered year after year. It explains the hoops, the forms, the calls, the letters, the appeals that followed... and how the family accessed Medi-Cal, our state's medical insurance program, to keep their son alive while the fight for continued coverage continues. The value of David's life and his status as a beloved son are never questioned here--as they too often are in stories about other families, other kids--the insurance company's decision and its impact on the Denneys are the focus of this story, and rightly so.

Definitely living!

[Image description: Smiling blond boy in a zip-up hoodie, sitting in a cylindrical playground structure made from red mesh.]

Jacqui at Terrible Palsy says, "You all know how much I hate the media portraying a person as suffering from cerebral palsy. So I was thinking to myself - how come they can’t say that a person is living with cerebral palsy." She follows this with some joyous recent photos of her kids--definitely living, not suffering! I'll follow suit. Here's my boy Jake, at left, not suffering at all, at our favorite park last spring (cerebral palsy isn't his primary diagnosis, but it's one of the many boxes we check on his medical forms).

Virginia Quarterly Review (Fall 2007)

I was browsing the new journals at the Huntington Library today--yes, that's what I do for a special treat on the occasional Saturday afternoon--and hit upon the Virginia Quarterly Review. I usually leave the literary quarterlies on the shelf, but I picked this one up, probably because it had a colorful cover (oooh, shiny). It was a special issue on "South America in the 21st Century," and two of the articles, which are also online, have disability themes:

Julio Villanueva Chang's "Through the Eyes of a Blind Mayor" (pp 15-37) is a profile of Apolinar Salcedo (pictured at left, in ceremonial sash and other signals of his office), the mayor of Cali, Colombia, who lost his sight in a childhood accident. He attended the Cali Institute for Blind and Deaf Children, and became a lawyer before going into city government.

Toño Angulo Daneri's "Aicuña is not an Albino Town" (240-263) is part photoessay, part journalism; the more interesting story isn't about the high rate of albinism in the remote Argentine town of Aicuña, but about the town's response in the face of outside attention to that local trait:

Ever since a Buenos Aires magazine called 7 Dias published a feature story on on Aicuña's albinos in the early eighties, the town's inhabitants have been wary of the press. The story's effect was immediate and, for them, unwelcome. People began to arrive hoping to meet albinos. They wanted to see them, photograph them, find out what they were like and how they looked, to discover what daily life was like in the town they imagined--one filled almost entirely by people with white hair and translucent skin... Ever since then the town has been protective of the albinos who live there, and evasive, even surly, towards outsiders.

Neither of these stories is written with explicit reference to disability culture or politics (and the latter author admits that he's asking exactly the prying questions that the townspeople detest), but they're well-written and worth checking out.

Look who turned up for the October Meetup!

Panorama taken at our DS Meetup, originally uploaded by Edu-Tourist.

We had a great turnout for our monthly Disability Studies Meetup at Temple University's TECH Center. It definitely had a literary and artistic flair. Carol asked each attendee to write down the name that they would like to give to their autobiography. I think we have the notes somewhere, but my favorite title was "I Learned Everything from Carol."

The more formal program consisted of a presentation by Sarah Drury on some of the basic computer circuitry that underlay eVokability, a project to expand the emotional expressive range of people with disabilities through new media. Photos from the public performance of the eVokability: The Walking Project can be seen elsewhere on this blog.

Shoutout to Lydia for the bringing the veggies! We are open to suggestions on artists and performers to bring in next month, in conjuction with the Philadelphia's own Independence Starts Here Festival of Disability Arts and Culture.

Smuggled Iguanas + Prosthetic Leg = News?

This story is local, so maybe I'm seeing and hearing it everywhere this morning for that reason. (On the other hand, the BBC's website already has the story up.) Or maybe it's just that, for some unfathomable reason, any crime becomes "quirky" news when a prosthetic leg is involved. (Neon-green iguanas are just a bonus element.)

It's still a federal crime, folks.

(Hat tip to Abe Munder, the Wheeled Wonder, for some of those news links.)

Chief Justice Roberts, meet Tony Coelho

If Chief Justice Roberts doesn't already know former Congressman Tony Coelho (portrait at right), now would be a good time to get acquainted. Coelho was one of the primary authors of the Americans With Disabilities Act. He's now the chairman of the board at the Epilepsy Foundation. And he's one of the best-known people with epilepsy in public life today.

Coelho's story was frequently told during his time in Congress: he had studied for the priesthood, but a medical exam found that he had epilepsy (he didn't know that before, apparently) and that fact barred him from taking his vows. When the diagnosis was reported to the state, he also lost his driver's license and health insurance, both denials standard at the time. He went to work for a Congressman, and later ran for the same seat and won. He rose to the position of House Majority Whip during his six terms in office.

But what if you have a seizure at the White House? he was asked during his first campaign. His response: "Well, in the 13 years I have served in Washington I knew a lot of people who went to the White House and had fits. At least I’d have an excuse." (My response: The White House probably has soft chairs and couches and a first aid kit handy, so what's the problem?)

There's an anecdote in Anne Fadiman's The Spirit Catches You and You Fall Down about Coelho (the Hmong child with epilepsy at the center of the book's story happens to live in Coelho's California district):

Coelho is a popular figure among the Hmong, and a few years ago, some local Hmong men were sufficiently concerned when they learned he suffered from qaug dab peg [the Hmong term for epilepsy] that they volunteered the services of a shaman, a txiv neeb, to perform a ceremony that would retrieve Coelho's errant soul. The Hmong leader to whom they made this proposition politely discouraged them, suspecting that Coelho, who is a Catholic of Portuguese desccent, might not appreciate having chickens, and maybe a pig as well, sacrificed on his behalf. (20-21)

Fadiman goes on to note that epilepsy is considered an especially spiritual condition in Hmong culture, so "what was considered a disqualifying impairment by Coelho's church might have been seen by the Hmong as a sign that he was particularly fit for divine office. Hmong epileptics often become shamans." (21)

[Pedestrian Hostile has good commentary on the coverage of Roberts' seizure.]

Rice Crackers and Sunshine

There was a great opinion piece in Sunday's LA Times. Titled "You know what makes me sick?" by Massachusetts writer Heather Abel, it details the years of misdiagnosis and mistreatment she experienced before getting the right diagnosis for her (celiac disease). She concludes with the bottom line:

I am relieved that treatment for celiac is as low-tech as rice crackers. But I wonder whether, if my disease did have a pharmaceutical remedy, doctors would have diagnosed it earlier. 'Here,' they would have said, 'free samples! Take four.'

Heather Abel's mother, Emily Abel, is credited as contributing to this essay. Emily Abel (a professor at UCLA) has been writing about the history of public and private health issues for years; her Hearts of Wisdom (Harvard UP 2000) is my favorite go-to text on family caregiving in US history, rich in detail and variety. Her latest book, Suffering in the Land of Sunshine (Rutgers UP 2006) is about tuberculosis as a public health issue, a cultural phenomenon, and a personal experience in early 20c. Los Angeles. (Haven't checked it out yet, but it's on my list.)

In Search of....the first TAB

No, not that kind of TAB (illustration at left is a can of the softdrink called TaB). I'm on a search for the first use of the term "Temporarily Able-Bodied (TAB)". Love it or hate it (and there are plenty in both camps), it's a term you'll frequently encounter in disability culture these days. I've seen vague references to its emergence from the American disability rights movement, and those seem correct, but I want specifics: who used it first? When? When was it first written down, or recorded? Here are the bread crumbs I've found so far; I'm hoping someone out there in the blogosphere can fill in the century-wide gap between the 1870s and the 1970s.

ABLE-BODIED: The Oxford English Dictionary has cites for the use of the term "able-bodied" back to 1622 in England and North America. In the mid-1800s, it's definitely being used in official contexts, in opposition to disability, in reforms that were meant to separate deserving (disabled) paupers from the "able-bodied" pauper (who doesn't deserve public funds, by this reasoning, because he should instead work for his living).

TAPs? The earliest appearance of the phrase "temporarily able-bodied" that I've been able to find in the academic journal archive JSTOR is a 1979 article in the Stanford Law Review. In footnote #107 in the article "Anti-Institutionalization: The Promise of the Pennhurst Case," authors David Ferleger and Penelope A. Boyd explain:

"TAP is a term disabled people use to refer to so-called 'normal' people as a reminder of the vicissitudes of fate. 'TAP' is an acronym for 'Temporarily Able-bodied Person.'"

Was TAP also in use in the 1970s, or are the authors mishearing TAB? If TAP was a competing term, what tipped the balance to TAB? (Both Ferleger and Boyd are now practicing lawyers specializing in disability and mental health issues, in the Philadelphia area--perhaps my esteemed colleagues at Temple know of them?)

GEORGE WILL?!?! A 1980s appearance is mostly interesting for its source: conservative political columnist George Will spoke approvingly about the term in a 1985 lecture at the Rehabilitation Institute of Chicago. In a 1986 Hastings Center Report article for the based on that lecture, Will says,

"We who are not physically handicapped are the 'temporarily able-bodied.' I like that because it reminds us that affliction and decline are coming to us all; they are incidental to our humanity. To be human is always to be more or less needy; it is to be increasingly needy the longer we live."

Will's version also illustrates one major problem with the term: it can be taken as an invitation to 'there but for the grace of God' thinking, an invitation that leaves unchallenged the construction of disability as a personal condition of decline, neediness, and affliction.

JUDY HEUMANN: In a 1989 article for International Rehabilitation Review, Ann Rae credits Judy Heumann with introducing the term 'temporarily able-bodied' in England. So the implication is that it's an American term, commonplace enough among American activists in the 1980s to be propagated abroad.

So where does this leave me? Still in the vague "sometime in the 1970s" zone. But I suspect somebody knows the answer to this. Or an answer, anyway. Anybody?

For once, tell a different story

The Ehler-Danlos Syndrome community (with support from the American Pain Foundation) is expressing strong opinions to ABC after the network's Medical Mysteries series featured an episode about EDS, an inherited condition that affects the structure of connective tissue throughout the body. Folks with EDS generally have "fragile skin and unstable joints," though the syndrome has a wide range of manifestations, according to the Ehler-Danlos National Foundation. Media attention, when it comes to EDS, almost invariable focuses on those with very hypermobile joints and "elastic" skin-- the "party tricks" of the impairment. "Circus Star is Real-Life Elasti-boy" trumpets the ABC press release.

Where's the harm? Well, for one, it's tedious to tell the same story over and over again. Any show that can be summarized as "Hey, look at this guy!" is hardly an innovative use of any medium. And sensationalizing bodily difference doesn't really educate or "raise awareness," it just encourages unwarranted pity and voyeuristic stares. Worse, if the only story about EDS that the public ever sees is this kind of gee-whiz coverage, it distracts from the more pressing concerns and everyday issues important to people with EDS: the distorted public perception can interfere with timely identification and treatment, and stigmatize those with the diagnosis.

The ABC Primetime message board is lit up with eloquent protests from the EDS community, and some pretty clueless responses from the show's producers. They describe difficulty in finding a doctor to take their pain seriously, they describe daily pain and frequent surgeries, and the real possibility that the effects of their EDS will be fatal someday. "No, EDS is not at all a funny disorder worthy of a circus side-show," explains one viewer.

Cute kids, betrayed parents

(Learned about this story from Nicole. Thanks for the heads up!)

Jan in Indianapolis was excited to learn that her handsome little son Nash (front and center in the image at left) was going to be featured on the cover of Indy's Child, which bills itself as "Central Indiana's Only Parenting Publication." She understood that the kids--all found through a call to the Indianapolis Down Syndrome Foundation-- were photographed at a pool, in swimsuits, because they were shooting the cover for a "Summer" issue.

That's not what happened. Instead, the photo was used for the current special issue on "Maternity" (shown here, below) --where it is apparently meant to relate to a story about pre-natal testing. The story features a mother saying, "I was fortunate. My daughter was born May 12 and shows no signs of Down syndrome. That's reassuring." There are no quotes from families who are happy to have children with Down syndrome, no suggestions toward learning more about parenting a kid with Down syndrome if you get a pre-natal diagnosis.

Did someone at the magazine think the families of these smiling children were, by contrast, unfortunate? The parents would never have consented to have their children pose as someone's worst-case scenario.

As you'd expect, Jan is feeling terribly betrayed. She's posted the address of the Indy's Child editors at her blog, in case others want to express dismay at this misguided juxtaposition. The families surely deserve an apology, and the magazine's readers deserve better information.

UPDATE Wednesday morning (5 July): Indy's Child has now pulled both the pre-natal testing story and the cover art from its website.

UPDATE Thursday (6 July): Jan writes at her blog, in an update to the above link, "Received a call from the VP of Indy's Child today. The Publisher and the editor (married couple) are in London vacationing and will return July 10th. Profusely apologetic he was, they never have received a response like this, positive or negative, in their 20 year history, meeting to be scheduled asap upon their return. While its good to be acknowledged, what is sad is that he said they had NO IDEA what they did.....we have some advocating to do people." Indeed.

UPDATE Monday (24 July): I just clicked on the Indy's Child link again--now the cover art is back up--but without the "Special Maternity Issue" or "prenatal tests" headlines. So, the cute kids stay, the story goes. And according to Jan's blog, the magazine is going to make it up to the IDSF by covering the annual Buddy Walk prominently, and featuring a story about families and Down syndrome sometime in the near future.

One-legged Tarzans of the world, unite

The Guardian columnist Alexander Chancellor wants to be your employment counselor: apparently, he knows what jobs and hobbies people should, and should not, pursue, based entirely on their disability status. Well, he knows which work he would avoid if he had a disability, and his wisdom should suffice for all. If you can manage to be "triumphantly successful" maybe he'll give you a pass as an admirable "marvel." But really, why must disabled people persist in thwarting fate, and Chancellor's cherished sense of natural order? You're making him think, and imagine, and apparently he hates that sensation.

(It's true, sometimes people are mismatched to their jobs; but only when there's a disability angle to cover does such a case seem to become newsworthy, a socio-political indicator requiring harrumphing commentary like Chancellor's.)

Capitol protest

About five hundred disability-rights protesters from across the US visited the Capitol on Monday, organized by ADAPT; over a hundred of them were arrested for refusing to leave private offices, and some spent the night in jail. They targeted members of Congress who had not signed as co-sponsors of MiCASSA and other legislative efforts to combat the institutional bias in long-term care services. The story was widely if briefly reported in local television stations across the US (so there must be footage), and carried, again briefly, to newspapers by the AP (here's a shortlived link to that account, so read it quick). ADAPT's got a longer version, of course, with photos, here, and in this press release.

Why celebrate?

Sigh. Commentator Rod Liddle in the Times of London thinks the public display of Alison Lapper Pregnant is about "the fashion for disability," which he considers a "delusional ideology," and asks, "Why would we wish to pay tribute to disability; if we're being honest, isn't disability bad, wouldn't we rather not have it at all?" The argument sounds very undergraduate. So let's walk him through it like an undergraduate, shall we? This argument is the same as saying that we shouldn't celebrate any minority experience, because it's just so much easier and more pleasant to be a member of the majority. Why celebrate being a woman? It's clearly so much more noble and exciting to be a man like, say, Admiral Nelson (whose Trafalgar Square statue is fine with Liddle--he lost the limb and eye in battle, so that's indisputably tribute-worthy).

The Voices

While clicking around the excellent The Voices Recordings map at the BBC site, I lucked onto the dot over Edinburgh. Each dot on the map leads to a page of sound files of people conversing in that place--so you hear Scots women in Ayrshire talking about shoes, or a family of Kentish fishermen talking about the weather, that kind of thing. They're usually talking about language, whether it's quirks of local vocabulary or accents or the power of certain epithets. Anyway, the Edinburgh dot brings you to a page with five sound files of three actors with cerebral palsy, discussing disability terminology and disability culture. James McSharry, Robyn Hunt, and Malawi Logan are the wonderfully candid, articulate, and frank participants--if you get a chance, have a listen. On childhood taunts, for example, McSharry says, "Somewhere along the line, that language creates a stereotype that it's ok to throw a stone at me."