Move along

Nothing new to read here, nor will there be for a couple days.

Instead, go here, here, and here.

US Census 2010 will not track disability

An article by June Kronholz in The Wall Street Journal announces that the official United States Census, performed every decade, will include only six questions in 2010. None of these will address health or disability status.

An excerpt:

The old long-form census questionnaire, with its queries about house size, commutes to work and other details about daily life is out -- spun off in 2000 to the new American Community Survey, which questions 3 million households a year. For the 2010 census, every member of the country's 120 million households will get a one-page form asking for information that Congress has said it wants to know. (The final form of the questions is subject to congressional review.)

The six remaining questions? Name, relationship to "head of household," gender (two choices) and age. Questions 5 and 6 are required by Congress. Six is a general question about race, and five tries to nail down who is Hispanic and exactly where they're from.

Here's a fun fact:

Under a 2005 order from Congress, question No. 6 also allows people to call themselves "some other race" and identify that race on a fill-in line. In census tests, respondents declared themselves Creole, Aryan, rainbow and cosmopolitan, among others.

Absent along with any disability-related questions: income level, employment status, health care coverage, education, marital status, housing speciifcs, languages used....

Heather Mills takes to the dance floor

If, like me, you have a sordid fascination with tedious reality TV, you should know that the new season of the American version of Dancing with the Stars will include Heather Mills as one of the contestants battling for the award of best celebrity ballroom dancer. Best known as Paul McCartney's estranged wife (is the divorce final yet?), Mills is also a UN Goodwill Ambassador and an international spokesperson for the banning of landmines. Her left leg was amputated below the knee after being hit by a police motorcycle in 1993, and if you've seen Dancing with the Stars in the past, it's clear that the rigorous competition will be affected by whatever accommodations she needs to make to perform what are, in ballroom competition circles, some very precisely regimented moves.

Like her famous husband, Mills is British. And Britain TV's portrayal of the many variations of physical difference and disability appears much more frequent and sophisticated than American TV. I think it's pretty fantastic that someone with a well-known mobility impairment has been cast on an American show where the competition focuses on beautiful movement. At the very least, the conversation around her ability to compete, dance beautifully, and perform required steps that may be much more difficult with a prosthetic leg will be interesting to follow. The season begins March 19 on ABC.

All this crazy talk is driving me nuts

There's no denying it. Michele Bachmann, Republican representative for Minnesota's 6th congressional district, is an embarrassment to Minnesotans. Those of us who are not rabid right-wing Christian Republicans intent on banning abortion and equal rights for gay couples have known this for quite some time. Her clingy behavior at Bush's recent State of the Union Address gave the nation a taste of who she is. And her most recent pronouncements about her secret knowledge of Iran annexing the eastern half of Iraq must certainly be leaving some who voted for her wondering about their own judgment. And our safety, so long as she is a government official making decisions on our behalf.

But.

Unless Bachmann makes some announcement that she is bipolar or schizophrenic or has some other mental condition that causes her to behave in ways we all fail to understand, she is not "crazy." Or "wackadoo." Or "nuts." Or "insane." Or riding the "crazy train." (And even then, those terms -- not so helpful.) I'm not thrilled with the oft-used term "wingnut" either, by the way. There are medications for those real problems, which have nothing to do with being a scary and untrustworthy politician. Bachmann just appears to be bigoted, unreliable, inappropriate and really, really incurably weird.

Update: Mark Gisleson of Norwegianity writes on how he sees Bachmann's recent pronouncements as part of her extreme religious agenda. While I surely understand everyone's incredulity with Bachmann, Mark's analysis seems accurate and much more useful to me.

Saturday Slumgullion #29

First some new links regarding Ashley X:

"Straight on till mourning" by John Hockenberry at his place, The Blogenberry:

Disability has nothing to do with the morality of the Ashley Treatment. Parents of disabled or non disabled children are the people who bring them into the world and help them live their lives and grow up to be whatever it is they will be. While Ashley’s options as an adult are certainly limited because of her disability they were not predetermined until Ashley’s parents and doctors stepped in.

I am not going to argue that Ashley’s parents are immoral or unjustified in what they did. I will argue that they are no longer Ashley’s parents. Regardless of their love and affection for their daughter their decision to remove her breasts and uterus and maintain her in a state of pre-puberty is not a parental decision. It is more the kind of control one might enforce on a pet to manage the relationship. It is something a farmer managing the productivity of his or her operation would naturally enforce on livestock. This would be done humanely, morally, and no-doubt with considerable tender affection and love for the subjects. There would be no outcry and no controversy, yet no one would confuse these acts of husbandry as parenthood.

From Medill Reports, "Disability activists press 'Ashley Treatment' case with AMA"

"Medical ethics malfunction" by Reuben Apple at his blog Politics and the English Language:

When I first heard about this case, I sympathized more with Ashley's parents than with their daughter, maybe because I thought I had more in common with them. I could even have been persuaded that Ashley should be killed. I thought, mental development arrested at 3 months, she's nothing but a burden, even to herself. Then William Peace reminded me that, in the only way that matters here, I do not have any less in common with Ashley than with any other person: we’re both people. That is the critical point from which I saw that Ashley's dignity - because by extension the dignity of all disabled people and by further extension the dignity of all human beings - should be everyone's primary concern in this matter. Now I think that, if we let her, she might make a contribution to society that few others could.

Kestrell at The Blind Bookworm writes "Whats the story? Ashley X and the journalistic challenge of wirting about disability"

And other linky stuff:

More on hybrid cars and the dangers their quiet engines pose for blind pedestrians.

Newsday's Carl MacGowan on the latest testimony in the case of the deaf boy v. the school district refusing to allow his service dog in school.

From The Michigan Daily, veterans vow to sue if renovations to the Michigan Stadium do not comply with the ADA. More from The Detroit Free Press.

From MSNBC, "Woman in iron lung celebrates 60th birthday"

From the SFGate.com, Tom FitzGerald writes about Kevin Laue, a one-armed high-school basketball player, in "The shotblocker: Amador Valley's Laue intimidates despite disability"

From The Toronto Star, a report on 1,600 developmentally disabled folks institutionalized in nursing homes because Ontario doesn't know what else to do with them. Letters to the editor here. The main article quoted here:

The huge increase of nursing home beds in recent years produced, in some jurisdictions, an over-supply of beds, she says, so that funnelling the developmentally disabled there has helped keep the nursing homes lucrative and filled. She points out that nursing home beds are relatively cheap – cheaper than spaces in either group homes or regional centres – and many of the homes are for-profit enterprises.

Spindel discovered that people with developmental disabilities are, on average, 31 years younger than the general nursing home average age of 83. Some are as young as 18.

From the NYT, an article by Karen Olsson about a young woman and her two autistic brothers (This should be a permanent link):

Tarah Perry wishes her brothers would remember to put on deodorant. Other 16-year-olds, after all, don’t need to be reminded of that by their 14-year-old sister. Other families don’t keep a stick of Degree in the glove compartment to enforce deodorant compliance on the way to school in the morning. Granted, Justin and Jason are different from other brothers — they are autistic twins — and Tarah’s family is therefore different from other families, and generally speaking she is perfectly O.K. with that. It’s all she has ever known. But lately she has been fighting more with her brothers. They irritate her, she says. They stink. She tells them as much, and they squabble about it, as any siblings might — only when you’re 14 and your brothers are disabled and you don’t know whether they’ll ever make it on their own or whether you’ll be responsible for taking care of them, then even the little things take on greater weight. Because what Tarah also wishes is that her brothers will one day manage to hold jobs and find friends and live the kind of life that regular deodorant-wearing people live, or some semblance of it. And in the meantime, it would be nice if they didn’t smell up the car.

AP reporter Nancy Zuckerbrod writes about the No Child Left Behind Act, its effects on learning disabled children (and those learning English as a second language), and expected changes to the law.

Scott Rains at Rolling Rains offers the link to an extensive study on Hurricane Katrina and the disaster's impact on disabled people.

RighteousBabe at DailyKos writes about Ty Siegel, (the Iraq war vet whose wedding pics have made the net rounds recently,) disability politics, pride and identity, and liberals/Democrats. Hundreds of comments in response, too.

The NYT again. Aliyah Baruchin writes on "Battling Epilepsy, and Its Stigma"

Koufax nominations

The awards aren't by any means final, and I don't expect to win, but I wanted to acknowledge that The Gimp Parade was nominated (along with dozens of others) as Best Single Issue Blog, and the post "Until every single penny is gone" was nominated for Best Post. I'm honored that several people thought of me for the awards.

And I encourage everyone to check out the full list of nominees for each category. It's a great way to discover blogs you should be reading but don't know about yet. I believe my blog and Writhe Safely are the only ones dedicated to disability issues to be nominated, but there are some health blogs, women's health blogs, feminist blogs and more general topic blogs that write good stuff relevant to or directly about disability politics. Among those nominated across the various categories, I recommend:

Woman of Color Blog
Writhe Safely
Echidne of the Snakes
Daily Darfur
Queer Dewd

Under the Best Post and Best Series categories, there's some fantastic blogging, with links to specific posts of excellence provided. And for some laughs, Best Humorous Post. Check it out.

Disability Blog Carnival #9 at The 19th Floor

Carnival 9! At Mark's! I can't believe this is the ninth carnival already, and that there are always new bloggers to discover every other week. The theme for Mark's carnival is Employment and I'd like to highlight the importance of the topic with a couple fun links:

From disabilityinfo.gov:

To support the goals of the New Freedom Initiative President George W. Bush directed federal agencies to create DisabilityInfo.gov in order to connect people with disabilities to the information and resources they need to actively participate in the workforce and in their communities.

From the Consortium for Citizens with Disabilities statement on Bush's 2008 budget (pdf file):

After promising to expand employment opportunities for people with disabilities as part of his New Freedom Initiative, the President proposed for the seventh year in a row to eliminate the supported employment program that successfully assists people with significant disabilities to work in the community and be productive tax-paying citizens. For the first time since the Congress added a mandatory increase to the Vocational Rehabilitation State Grant program based on the Consumer Price Index more than two decades ago, this Administration even failed to add the CPI increase to its budget request. Total VR Act funding is cut by $54 million while millions of Americans with disabilities remain unemployed. In addition, the President again proposes to cut the Assistive Technology program that assists individuals with disabilities to be successful and included in classrooms and at work by over $4 million.

From the U.S. Department of Labor's info based on the 2000 Census:

The percent of people with disabilities aged 16-64 employed is 55.8%.

Of the 18.6 million people with disabilities employed aged 16-64, 60.1% of men with disabilities are employed, and 51.4% of women with disabilities are employed.

The next carnival is scheduled for March 8 at HIV, Deafness & Disability, with the deadline for submissions on March 5.

On CNN's Anderson Cooper show tonight: Amanda Baggs of Ballastexistenz

Dr. Sanjay Gupta, a medical corresondent at CNN will interview Amanda Baggs on the Anderson Cooper show tonight, 10 P.M. Eastern time. From Gupta's blog:

She taught me a lot over the day that I spent with her. She told me that looking into someone's eyes felt threatening, which is why she looked at me through the corner of her eye. Amanda also told me that, like many people with autism, she wanted to interact with the entire world around her. While she could read Homer, she also wanted to rub the papers across her face and smell the ink. Is she saw a flag blowing in the wind, she might start to wave her hand like a flag. She rides in a wheelchair, she says, because balancing herself while walking takes up too much energy for her to also type and communicate. To an outside observer, the behaviors would seem eccentric, even bizarre. Because Amanda was able to explain them, they all of a sudden made sense. In case you were curious, there is no possible way that I was being fooled. Amanda, herself, was communicating with me through this voice-synthesis technology.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn't communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn't help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Updated: The transcript of the show is here, though it's the complete show and you need to scroll down a bit to get to the section with Amanda. Anchor Kiran Chetry also says there will be "much more with Amanda and Sanjay tomorrow. Plus, you can also read a blog by Amanda and watch her video by logging on to CNN.com/360blog. While you're there, you can actually ask Amanda questions about autism."

The last ten visitors

This is a typical sample of the last ten visitors to this blog. They came through a search for:

devotees porn
disabled frustration
porn with handicapped people
getting excused from jury duty
disabled porn
disabled porn
Helen Keller
disabled veterans
naked wheelchair women
feminism niqab

And so, for 5 out of ten search-engine visitors, I give you, porn for disabled people:










































































Visual description: There are seven tantalizing photos -- 1) some black, bendy, modern-looking wrist-cuff crutches, 2) a warehouse of hundreds of shiny new scooters all lined up in rows, 3) the foot portion of a very high-tech prosthetic limb that is sleek metal and is called the "sprinter" (it says so right on it), 4) three different views of a wooden cane with flames painted down its length, 5) an alert, very cute young dog wearing a "guide dog in training" vest, 6) the "tank chair," a wheelchair with tank treads where the four wheels would normally be (the rider would sit about two feet higher than the norm), and 7) a sturdy, wide, new, gently-sloped, apparently ADA-compliant ramp.

The Sparrow

I've been reading The Sparrow, by Mary Doria Russell. It's a captivating novel about a Jesuit-funded mission to contact newly-discovered aliens on a planet in the Alpha Centauri region of space. It's set just twelve years into the future -- 2019 -- and, well, the story doesn't seem to be any more about disability issues than the average novel, which is to say that there is always a little something about impairments and the human condition in most fiction. Though the mysterious happenings in the far reaches of space do involve horrific damage to one of the main character's hands, I haven't read far enough yet to see what that's all about.

But, interestingly, there's this, about the priesthood and celibacy:

It would not have surprised Emilio Sandoz to learn that his sex life was discussed with such candor and affectionate concern by his friends. The single craziest thing about being a priest, he'd found, was that celibacy was simultaneously the most private and most public aspect of his life.

One of his linguistics professors, a man named Samuel Goldstein, had helped him understand the consequences of that simple fact. Sam was Korean by birth, so if you knew his name, you knew he was adopted. "What got me when I was a kid was that people knew something fundamental about me and my family just by looking at us. I felt like I had a big neon sign over my head flashing ADOPTEE," Sam told him. "It's not that I was ashamed of being adopted. I just wished that I had the option of revealing it myself. It's got to be something like that for you guys."

And Emilio realized that Sam was right. When wearing clericals, he did feel as though he had a sign over his head flashing NO LEGITIMATE SEX LIFE. Lay people assumed they knew something fundamental about him. They had opinions about his life. Without any understanding of what celibacy was about, they found his choice laughable, or sick.

The single craziest thing about being blind, using a wheelchair, having an artificial limb ....

When I was new to being visibly disabled, a teenager, I thought of this mixture of the inability to blend and being made to symbolize something outside my own true experience as a kind of odd celebrity. People stare wherever you go. You use back entrances, meet with managers (and busboys) to get into venues through long back hallways before arriving at your reserved seats, have special policies that apply just to you. I could be tardy to my high school classes because it was assumed the elevator made me late. (Of course, it was often the elevator.)

There was a special White House tour for crips when I visited DC with my family years ago. I was spotted and we were literally pulled out of the very long ticket line and told to just approach a particular gate at a certain time without need for passes. As instructed, we jumped the line at the Washington Memorial too. But I have no sense of whether our special gub'mint tour included extras or deprived wheelchair-using folks of something special I'd have liked to see. As far as I know, I didn't have the option of declining these services -- it was the "accessible" gimp tour or nothing.

Some of this has been alleviated by ADA compliance over the years. I don't know about the DC sites -- the last time I visited just as the ADA was passed and much had yet to change.

But the single craziest thing about my life with severe physical impairments has always been this bizarre social exchange about what would otherwise be a private aspect of my body and my life. Not just the architectural barriers that must be negotiated, but the prayers, the judgments and the self-conscious comments of others designed to satisfy curiosity or put themselves more at ease.

Steve Kuusisto has blogged a bit about this recently:

They've spotted the guide dog. They see you are by yourself. They are good hearted people. They want to talk about dogs or the fact that they have a blind uncle, or auntie, or they have a blind neighbor, or maybe their postman is blind and for some unknown reason he's still delivering the mail by touch and isn't this a miracle?

Isn't it curious that the celibacy of priesthood, interracial adoption, being blind, and sitting on wheels all provoke remarkably similar public experiences? If you trust the fictional truth in the book I'm reading, that is. And I do. I do.

Oklahoma opens its first accessible prison

In a report out of Oklahoma City, Oklahoma, Angel Riggs writes:

Department of Corrections officials this week began moving several of the state's disabled inmates into Oklahoma's first handicapped-accessible prison unit.

The federally funded unit at Joseph Harp Correctional Facility near Lexington will house 262 prisoners. The DOC plans to move in 40 inmates each week until the facility is full.

Dubbed the "ADA facility" because of its compliance with the Americans with Disabilities Act, the unit is accessible for inmates who use wheelchairs and those who are visually impaired.

"We will fill it up extremely quickly," said Justin Jones, DOC director. The state currently has enough inmates who use wheelchairs to fill the unit, he said.

However, the facility also will house inmates being treated for cancer, on dialysis or recovering from major surgeries, Jones said. The prison unit also will accommodate offenders with dementia or those who are in the early stages of Alzheimer's disease.

This should concern prisoners' advocates, mental health advocates, disability rights activists, and anyone concerned with segregation, mandatory sentencing that lengthens prisons terms, crime and punishment, and racism in the justice system, that last effecting who gets to grow old in our prisons. Also, it begs the question, exactly how have disabled prisoners been faring these many years if this is Oklahoma's first prison to be made accessible? The answer is that they've not been faring well at all, of course, with conditions many disabled prisoners have faced challenging the standard of avoiding "cruel and unusual punishment."

New Mobility magazine's Jean Stewart covered the appalling conditions of inaccessibility in U.S. prisons almost a decade ago:

Gloria Johnson, for instance, a 43-year-old mother of two who has multiple sclerosis, is imprisoned in Chowchilla, Calif., 140 miles from the facility where Howard Andrews lived and died. Gloria is blind and uses a wheelchair, having lost the use of her arms and legs. When I visited her in January 1997, she was receiving haphazard attendant services, sometimes none at all, despite her inability to perform her own self-care and despite the clear mandate of the ADA and its applicability to the California prison setting.

In staff orders obtained by a journalist for the San Francisco Bay Guardian, the prison physician wrote regarding Gloria's care: "Do not overly coddle--perhaps deliberately 'delay' calls for bedpan." Gloria reports: "The nurses wouldn't do anything for me. They wouldn't help me eat. From Sunday evening at 8 p.m. to Tuesday at 2:30 p.m., I didn't use the bathroom at all. One night I had to go, so I fell out of bed and tried to drag myself to the bathroom. I didn't make it."

In an administrative complaint Gloria later filed at the prison, she described the kind of care she received: "While on my menstrual cycle last week, I had no choice but to spend hours--sometimes up to eight--in a blood-soaked pad. A couple of times when staff did come and change them and I had soaked through the pad, they did not even change the sheets or my underwear. I have been here 18 days and been given a shower only three times."

And:

Easton Beckford, a paraplegic Jamaican prisoner serving time in an upstate New York prison, fights as doggedly as did Howard Andrews to control his own medical care. When I first met Easton, his wheelchair had been taken from him for months on end, rendering him unable to move from his bed. Both sink and toilet in his cell were inaccessible; Easton frequently soiled himself. As punishment for his complaints about lack of access, he'd been denied permission to use the shower room. Thus forced to take "birdbaths" in his cell, he inevitably spilled water on the floor. As punishment for the spillage, guards would periodically shut off the water in his cell. He was denied necessary catheters and treatment for his pressure sores, without which he was in imminent danger of infection, and his epilepsy medication was randomly withheld.

In a letter to me dated February 2, 1995, Easton outlined his situation. Because his persistent demands for medical care were viewed as a nuisance, he'd been detained in a "strip cell" and deprived of everything--including clothing, mattress and blankets--thus forcing him to lie directly on the metal bunk with two decubiti. "I was left in a strip cell after Dec. 7 to Dec. 24.

The first night I ask the nurse about mattress & blanket her response was 'You're not getting anything to sleep on tonight Beckford because you're not cooperating.' That night I get a roll of toilet paper from the CO [correctional officer] who was working the unit. I spread it out over the bunk as best as I could to guard against the cold steel & using my dreadlocks as a pillow that is how I slept that first night. By the next night I was able to get 2 more roll of toilet paper & I spread them out & get what sleep I could. It went on like that until I made a nest on the bunk out of toilet paper but I'd 2 pressure sores coming out on my hips. I complain about the skin breakdown but no one came to look at them."

Will accessible prisons create more humane treatment for disabled inmates? Perhaps simply eliminating some architectural inaccessibilities will keep disability from being a source of "discipline" for some inmates with impairments, but will separating out disabled prisoners from others create a different kind of institutional bias or neglect? Historically, that's certainly been true of state run facilities housing disabled people.

While it could be argued that finally achieving ADA standards is a success, the state of Oklahoma expects to move 40 inmates per week into the new facility until it is full. By my estimation, the new joint will be overcrowded too in less than six weeks. And that's one facility in one state, with the whole prison population both aging and growing larger. Within the big picture then, the ribbon-cutting for one small "ADA facility" only illustrates the larger failures and human rights issues of the prison industry in the United States as a whole.

Minnesota politics: Health care and some 2008 contenders

In an effort to personally keep track of 2008 candidates and where they stand on health care and disability issues, I've plans to be much more wonky. Starting with this brief analysis from the Minnesota Monitor of where MN candidates for U.S. senate -- Wellstone's old seat -- fall on a variety of important topics:

Michael Ciresi, DFL-Mendota Heights:

Health Care: Says fear of losing health care is "putting the American dream further and further out of [people's] reach."

Sen. Norm Coleman, R-Minn.:

Health Care: Supports Bush tax-credit plan.

Al Franken, DFL-Minneapolis:

Health Care: Supports universal health care for children.

Franken is no Wellstone, but here's some interesting commentary on him by Paul Hogarth:

... In his book, Lies and the Lying Liars Who Tell Them, Al Franken wrote the most eloquent and powerful chapter I have ever read about what transpired [at Sen. Wellstone's public memorial service]. In 29 pages, Franken shared the anger and outrage that so many of us felt about how we were never really given the chance to properly mourn Paul’s death. Calling it a “Case Study in Right-Wing Lies,” Franken rebutted every fabrication that was sent out through the right-wing noise machine in the days after the Service that tragically changed the Election’s outcome. On a gut level, there’s a certain poetic justice about having Al Franken be the candidate in 2008 who defeats Norm Coleman.

And here's a STrib article fleshing out Franken's health care stance a bit more:

Franken said the large number of uninsured people in the country end up costing government much more than if they were to have some form of insurance.

"I don't think it will cost us any more. I think it will be cheaper," Franken said. "Every other advanced country in the world has universal coverage and they all spend less than we do on health care."

Franken said he hasn't yet formulated a specific plan for universal coverage, but said a good first step would be extending Medicare coverage to all uninsured children.

It's early, of course. But we'll see where this all goes.

I am Tardy Spartacus

Better late than never, eh?

Call for Posters on Celebrating Disability Culture

Celebrating Disability Culture

Call for Poster Presentations and Exhibits for our 2007 Spring Symposium on April 4th, 2007

Tell us what you do and how it enriches disability culture and contributes to rich, vibrant and strong portrayals of people with disabilities and our contributions to a diverse and livable community.

We welcome:
- Art presentations: Visual, Performing and Literary Arts
- Communal Story Tellings
- Academic Studies
- Research Findings.

We encourage posters that reflect diversity in the disability community.

Our 2007 Spring Symposium includes:
- a lecture/performance presented by The Anarcha Project: Carrie Sandahl, Anita Gonzalez, Tiye Giraud, Aimee Meredith Cox and Petra Kuppers
- Disability Culture Poster Presentations
- An Award Dinner
- A Crip Culture Cabaret A special evening theatre performance by celebrated California-based theatre artist Lynn Manning.

General Poster Presentation Requirements (negotiable): Posters/Exhibits should generally be 30x40 inches and mounted on firm poster board or wood, to be able to stand up by its own, and displayable either on an easel or a table top.

The audience for the symposium and poster presentations are the local disability community, University of Michigan faculty and students, and many disability culture activists from the US and beyond who are coming together to investigate the current shape of diversity in disability culture.

Please send descriptions and outlines by March 7th to the following email addresses: petra@umich.edu and cgrawi@aacli.org.

For questions please call: UMInDS Office (734) 647-6251 or AACIL (734(971-0277 ext47
(a maximum of twenty-five projects will be accepted)

Music: Krip-Hop and Sins Invalid

In January, a cd of hip-hop music by disabled artists was released. It's called Krip-Hop, Vol. 1, and information on how to get the cd is here. Participating artists come from the UK, Spain, Zambia, Haiti, and all over the United States. From the press release:

Artists with disabilities are in the music industry from Blues to Hip-Hop. From Blind Willie Johnson to Professor Blind F8 and Cripple Clarence Lofton to Four Wheel City, our music has helped shape the world we live in. Krip-Hop continues this legacy with many voices from the US, UK, Spain, Africa & Haiti rapping not only to the Hip-Hop generation but to society and the world as a whole about the talents, politics and sexuality we embodied and at the same time fighting against the discrimination that isolates us from one another. Krip-Hop displays the beauty and strength of collaboration and disabled music history, present and future.

On this mixtape you’ll hear gospel rap by Pastr S’wayne, old school, Crank (from Down South) by da Southern Boyz, Deaf Krip-Hop by the Helix Boyz, international Krip-Hop, by Jake of Spain, C.R.I.$.I.$ of Africa, political Krip-Hop by DJ Quad smooth radical spoken stories by ‘ron daniella and more. This is Vol. 1 and we know that there are many voices that are not on this CD. Please help us with Krip-Hop Mixtape Vol. 2. Krip-Hop is a promotional product. Our aim is to get the musical talents of hip-hop artists with disabilities into the hands of media outlets, educators, and hip-hop, disabled and race scholars, youth, hip-hop conference coordinators and agents etc.. On Jan 15, 2007, Krip-Hop will be on cdbaby.com and www.poormagazine.com and www.leroymoore.com

Producer Leroy Moore also announces the Sins Invalid call to artists:

Sins Invalid is a night of resistance to invisibility, celebrating the power of the disabled body as beautiful. We know that the world of embodied and enforced norms oppresses all of us, regardless of where we identify on the spectrum of sexuality, gender or ability. The event is a gift for participants and audience alike, encouraging a healing for all who challenge themselves honestly when unearthing sexual expression.

Sins Invalid is directed by people with disabilities; the majority of the artists identify as disabled; all of the artists will address disability and embodiment and/or sexuality.

Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility

CALL TO ARTISTS

A performance event to reveal poetic bodies and hot activism, Sins Invalid invites a re/view of embodiment, with performers and video artists speaking truths about their bodies and stripping taboos off of sexuality and disability.

In 2006, disabled artists put disability and sexuality on San Francisco's culture map, knocking the doors of silence open to bare wide the beauty of disability and the pain of dehumanization. Our stories reflected our lives in the community, our homes, our bodies and in the body politic.

This year, Sins Invalid invites YOU to get it up and put it on stage –- stories of gettin' some, gettin' none, the wanting of self and the embrace of difference. We seek stories of our living and tales which spin against policies that negate us and institutions that seek to deny us. And this year, we continue this artistic healing celebration, expanding our sights to seek parents with disabilities / people with disabilities who have thought about parenting inviting stories that talk back to the fabrication that we are un-fit.

Sins Invalid 2007 is open to artistic expression in all its form -- performance art, videos, spoken word, storytelling, song and visual media -- whose core expresses sexuality, power, healing and activism. We are looking for artistic expression that invites the audience to re/view sexuality & disability. We want artists who assert a personal/political statement on sexuality relating to constructions of disability. This call is open to artists with and without disabilities of all ages and ethnicities.

If interested, please submit your work to:
Sins Invalid
1370 University Ave. #316
Berkeley, CA 94702
sinsinvalid07@yahoo.com

You can send a CD or DVD. If you do not have examples of your work on cd/dvd, please contact us for alternate formats. Please feel free to email any questions to sinsinvalid07@yahoo.com or call (510) 689-7198. We will contact you to confirm receipt of your work.

Deadline for entries: May 2007.

If you need more info, please don't hesitate to contact me at: sfdamo@yahoo.com

Thank you.

Leroy F. Moore Jr.
On The Outskirts: Race & Disability Consultant
sfdamo@yahoo.com, www.leroymoore.com www.nmdc.us www.poormagazine.org www.molotovmouths.com

Saturday Slumgullion #28

The Argus-Leader of Sioux Falls, South Dakota, reports that plans to build the sign-language/Deaf community of Laurent have been scrapped.

The "Road to Freedom" bus travels the United States to raise awareness about the ADA.

From The Boston Globe: "The Rebirth of Braille"

CBSNews' 60 Minutes on the death of Timothy Souders:

Six months ago, Tim Souders was in solitary at the Southern Michigan Correctional Center. He was 21, serving three to five years. Though an investigation would show he needed urgent psychiatric care, Souders was chained down, hands, feet and waist, up to 17 hours at a time. By prison rules, all of it was recorded on a 24-hour surveillance camera and by the guards themselves.

The tape records a rapid descent: he started apparently healthy, but in four days Souders could barely walk. In the shower, he fell over. The guards brought him back in a wheelchair, but then chained him down again. On Aug. 6th, he was released from restraints and fell for the last time. Souders had died of dehydration and only the surveillance camera took notice.

The right to grow up: Gordon of Gordon's D-Zone weighs in on the Ashley X case.

At the Medical Humanities Blog, a fascinating map illustrating private health care spending globally (shown at right) and a corresponding map of infant mortality. Brief visual description provided.

A federal appellate court rules that "morbid obesity" alone does not qualify for workplace accommodation under the ADA.

A 2004 ADA case filed by the EEOC against Wal-Mart for discriminating against a workplace applicant with cerebral palsy gains news life as a federal appeals court reinstates the case.

The ongoing drama of the case between the New York Nassau County school district and a deaf boy who wants to bring his service dog with him to school continues. Previously, the police were called when the boy brought the dog with him.

From the Atlanta Journal-Constitution, another story on lack of architectural access. This one interests me, in part, for how it contrasts with reports on disabled people who sue for changes rather than patiently attending meeting after meeting :

"The way you do everything changes," she says. "It's harder, but it's still worth living. A lot of times, it's the artificial barriers that get in our way."

Barriers, like when Latta's condo complex renovated the clubhouse in 1998 and forgot to install a wheelchair ramp.

The decision meant Latta had to miss bridge tournaments, homeowners association meetings and even dips in the pool.

The board finally purchased a portable ramp, after Latta's complaints, but they control its installation.

"So now, they own the key to my accessibility," Latta said.

But Latta's life hasn't suffered.

Though this Washington Post article is just over a year old, it's a well-written description of the journalistic tendency to make disability into inspiration for the nondisabled masses.

A variation on journalistic treatment of disabled folks, The Village Voice's Valentine's Day report on a disabled man's search for love includes this visual description:

He walks the streets stiffly. His feet, like a duck's, point inward with each step. His shoulders hunch up toward his hairy lobes, and pockmarks and pimples stretch from the tip of his short brown hair all along his jawline. If he looks slightly down—past his rounded belly, past the hand lying robotically rigid by his side—to the ground, his chin doubles. He checks out the girls that pass, one hazel eye following a tad faster than the other.

A well-written opinion piece by Penny Reeder on United States currency, the Bush administration, and their commitment to equality for blind folks:

And, the final third of you who have decided that “The Blind” really don’t deserve to be treated like everyone else in the country and the equivalent treatment provisions of the Rehabilitation Act of 1973 really don’t apply to “The Blind,” well, I’m going to introduce you to the Nation’s Capital-area’s ParaTransit system. I want to know what will happen when you try to give a MetroAccess driver your envelope full of currency. There’s no way he will accept a credit card even if you cheat and dig that out. And, if you don’t have the right change, your driver may – as mine did recently when I handed her a twenty instead of a one – threaten to “just put you off,” because you should know the rules, after all!

From the Pittsburgh Post-Gazette, a report on how bus service cuts affect the visually-impaired who rely on public transportation.

Volkswagen pulls "jumper" ad from TV

From AdWeek:

Volkswagen today said it would pull a 30-second TV spot called "Jumper," which had drawn criticism from suicide prevention groups.

The ad, by MDC Partners' Crispin Porter + Bogusky in Miami, shows a man who stands on a building ledge, contemplating suicide. He abandons the notion after being informed that there are three VW models for under $17,000....

The commercial was decried by several groups, including the Suicide Prevention Action Network, National Alliance on Mental Illness, American Psychiatric Association, Mental Health America and the American Foundation for Suicide Prevention. Those organizations claimed the spot is insensitive to depressed and suicidal people.

"We commend [VW] for their actions" in pulling the ad, said Robert Gebbia, executive director of the AFSP. "We need to speak out when we're not happy, but we also need to say thank you when companies do the right thing."

The move follows General Motors' decision last Friday to edit a spot by IPG's Deutsch/LA that showed a despairing assembly line robot that dreams of flinging itself off a bridge. Following an outcry by advocacy groups, the spot, which aired on the Super Bowl, was pulled from GM Web sites and the company agreed to recast the commercial's finale. A retooled "Robot" spot will air by month's end.

The video of the VW ad is available at the first link above, for now. It's been posted and removed from YouTube a couple of times, so it may not be available to view and judge for yourself for very long.

Visual and aural description:

Somber music. An unshaven man of perhaps 35 stands at the edge of an urban rooftop, the grey city all around in the distance, and hollers to a crowd in the street below: "There's no affordable housing! You think I wanted high taxes or global warming? Reality tv? I don't even know my neighbors." As he speaks a policeman raises a bullhorn to respond, but lowers it as he listens to the man.

Then a shiny silver VW zips up and honks. The driver leans out the window of the car and shouts up: "Three V-dubs for under $17,000!"

The man barely hesitates, then says, with a little stutter, "I'm comin'-- I'm coming down. I'm coming down." He turns to hop off the ledge to the safer space of the roof as the ad ends with swelling music and a separate picture of the three VW models, tires screeching, lining up in a row.

Update: Well, it's February 22 today and I've seen this ad twice late in the evening on the cable channel Spike in the last few days.

Parents sadistically abuse disabled toddler

From Book Girl at Falling Off My Pedestal, I hear about this UK couple and their unbelievable campaign of violence against a child:

She was forced to eat her own faeces and will be "scarred for life" after boiling water was poured on her hands, causing third degree burns.

The sick couple also yanked clumps of hair from her head, leaving bald patches and open wounds, and kicked her repeatedly in the groin, causing "horrendous bruises" plus liver damage.

The girl, who has cerebral palsy, was also forced to sleep naked in a dark toilet and eat her own faeces in Duncan's twisted idea of potty training.

She was also malnourished as Duncan refused to let her eat unless she could feed herself with her severely weakened hand, meaning she ate mainly porridge.

They've received a total of 22 years in prison, according to the news report.

Locally, I keep hearing the ABC news affiliate advertise a story of a woman who sold her developmentally disabled sister to someone, and received just 8 months in jail, but I cannot find any evidence of the case yet on the internets.

In the media

Today, Thursday: On The Largest Minority, a disability radio show on WBAI, a panel of people with varied and interesting experiences of disability discuss the Ashley X case. From the press release:

On this month's Largest Minority radio show we'll present a provocative discussion of the controversial "growth attenuation" procedure for a young girl in Seattle, known as the "Ashley Treatment" -- what does this mean for people with disabilities? What does it say about the public perception of PWD's?

Panelists will include:

-- Hank Bersani, President of American Association on Intellectual and Developmental Disabilities
-- Arthur Caplan Ph.D., Chair of Department of Medical Ethics at the University of Pennsylvania
-- Lawrence Carter-Long, Director of Advocacy, Disabilities Network of NYC
-- Lunetha Lancaster, formerly of CIDNY (Center for the Independence of the Disabled in NY)
-- Edward R. Matthews, the Executive Director of United Cerebral Palsy

Also on the show, we'll talk to Simi Linton, writer, public speaker and advocate who is currently co-director of Columbia University's seminar on disability studies. Her latest book, a memoir entitled My Body Politic, has just been released in paperback. More information at: www.SimiLinton.com

You can listen the show streaming live online at 11am eastern by going to www.wbai.org Following the broadcast the show will be archived both on WBAI's website and at our homepage, www.LargestMinority.org

Friday: ABC's Nightline features the documentary film Darius Goes West, winner of four awards at three different film festivals:

-- Audience Choice Award, Santa Barbara Film Festival

-- Best Documentary and the Audience Choice Award, Oxford Film Festival

-- Honorable Mention Award, Documentary over 30 Minutes, Picture This:
Canada's first International Disability Film Festival

Additional info for Darius Goes West:
Web site

Movie Trailer

Blog

Poetry: Lucia Perillo

by Lucia Perillo from The Body Mutinies

Thinking about illness after reading about Tennessee fainting goats

Maybe they're brethren, these beasts bred clumsy,
hobbling stiff-legged over cheatgrass tufts.
Prized for how they'll freeze unpredictably
then fall, rehearsing their overwrought deaths.
Sometimes it's the woman who brings the meal
who sets them off by wearing yellow slacks,
or sometimes the drumming a certain wheel
makes on the road's washboard. Stopped in their tracks
they go down like drunks: Daisy and Willow
drop always in tandem, while Boot will lean
his fat side first against the hug-hut door.
How cruel, gripes a friend. But maybe they show
us what the body's darker fortunes means-
we break, we rise. We do what we're here for.

A little labor history

What the poster says:

The hatmakers of Danbury, Connecticut -- the United States' leading center for felt hat manufacture -- led one of the major battles for workplace health and safety of the industrial age. As artisan workshops gave way to factories, uncontrolled exposure to nitrate of mercury took an increasing toll on the health and lives of the workers. Hatters worked in a steam of toxic fumes often with their hands in the poisonous chemicals which were used to turn rabbit fur into felt. Up to 20 - 40% of the workers suffered from the "hatters' shakes," nerve damage, rashes, headaches, emotional instability, and impaired ability to walk, talk, and eat. Their condition gave rise to the phrase "mad as a hatter." Workers who complained were fired and "blacklisted". United Hat Makers of North American Local 10, in coalition with progressive reformers in the Workers' Health Bureau, led a protracted campaign in the 1920s and 30s to clean up the workplace. Despite intense resistance from the manufacturers they finally forced a government ban on non-military workplace mercury in May of 1941.

Poetry: Lois Keith

Another poem on disability, written by Lois Keith:

Tomorrow I Am Going To
Re-write The English Language

Tomorrow I am going to rewrite the English language
I will discard all those striving ambulist metaphors
Of power and success
And construct new images to describe my strength.
My new, different strength.

Then I won't have to feel dependent
Because I can't Stand On My Own Two Feet.
And I will refuse to feel a failure
Because I didn't Stay One Step Ahead.
I won't feel inadequate
When I don't Stand Up For Myself.
Or Illogical because I cannot
Just Take It One Step At A Time.

I will make them understand that it is a very male way
To describe the world
All this Walking Tall
And Making Great Strides.

Yes tomorrow I am going to rewrite the English language
Creating the world in my own image.
Mine will be a gentler more womanly way
To desrcibe my progress
I will wheel, cover, and encircle.

Somehow I will learn to say it all.

Losing my religion, part 3

In August of 2005, before my medical crisis that November, and prior to the long hospital stay and the thoughts and prayers offered by so many good people, I wrote Losing my religion, part 1 and part 2. I've thought on writing the promised part 3 many times since, but haven't been able to clarify my complex feelings enough to write more.

But last week, Chris Clarke of Creek Running North (and, recently, Pandagon) lost his beloved dog Zeke and was compelled to respond to the many blog comments and emails he's received that insisted on reassuring him about an afterlife for his lost friend when he has made clear he is atheist. He felt the need to specifically ask the people of the internets to stop pushing their beliefs upon him while he grieves. He said this:

But when people persist, in what they know is one of the worst weeks of a person’s life, in telling that person his belief system is wrong and misguided as a way of ostensibly showing sympathy and compassion, that, my friends, is an example of religious intolerance. When people respond to a politely worded request to can the heaven stuff by ramping up the heaven stuff, that is an example of religious intolerance. When a person has to take time out from grieving to forgive people who’ve made him feel a lot worse, telling himself that he has to give them slack because they’re upset over the death of his family member, that he has to remember they’re just trying to make him feel better with promises of meeting again despite his express request, that is a symptom of religious intolerance.

And I find myself thinking: This is why I quit going to church and why I cannot reconcile the community I experienced as a less visibly disabled child with any sort of meaningful participation in organized religion as a visibly disabled adult.

From the perspective of so many people, being disabled is like living the worst week of your life all the time, and therefore justifies the imposition of their religious beliefs on you all the time. You know, to be helpful. Combined with the persistent beliefs in many religions -- reinforced by religious texts -- that disabled folks are afflicted because of past sins or will only have worthwhile lives when healed, the weight of other people's religious convictions can drive away even true or possible believers who are disabled. It's been the case for me and some commenters here.

To clarify, I'm agnostic, and also so distracted by the disability attitudes of others in a religious environment that I cannot separate the good aspects of religious community from the overbearing ableist ones. Even in non-religious settings, the "God bless yous" from strangers can be impressive in quantity and fervor. It's clear that an enormous portion of the population believes disability equals a greater need for prayer. And I'll say it now: that just is not true. By and large, this determination that disabled people need special spiritual consideration has a lot to do with visual disability and the perception of who is and is not suffering. For example, when I was a pre-wheelchair teen struggling to walk and not trip over clumsy feet, I did not get the "God bless yous" that I did when I began traveling by chair. From a practical perspective, my life became easier and less exhausting when I started living on wheels, but the public perception seemed to be that I needed more input from God.

Disability is not equivalent to suffering. It's reasonable to say that impairments and the challenges that surround them can and frequently do involve a variety of human suffering, but the relationship is not certain or necessarily acute and it's insulting when people assume that it is. Pain, hardship and fear are qualities of human suffering, and during my medical crisis that has ended with my continuing use of a ventilator to breathe it is sometimes hard to separate my social experience of disability, the essential bodily experiences of my neuromuscular disease and the impairments it has caused, and the slightly different quality of having an illness or deteriorating condition that does definitely cause suffering. Exploring this has led me to write much more personally here in the last year.

One can be severely impaired, conscious of it all and not feel in need of special kindness from other people, though, of course, general kindness is appreciated. That was the position I typically felt myself in when I began this blog and it is how I feel most often now on a daily basis, though it would be true to say I experience more pain, hardship and fear than I have before in my life. My health and upkeep are much more complicated than they've ever been before and won't ever improve significantly.

My parents and most of my extended family are church-going Christians who probably cannot separate their lifelong relationships with their rural communities from their membership in a church congregation. Through them, I've been offered spiritual support from their communities, to which I don't really belong. While I was in hospital, I cherished visits from my parents' pastor and the rehab institution's chaplain, mainly for the focused attention to my spirit and emotions without familial baggage. But I also specifically appreciated prayers, though try as I might, I cannot fully connect with the religious purpose of them. Because I needed the emotional support so desperately for a time, I found myself able to translate other's prayers into what I could use -- loving thoughts and positive energy.

So I don't participate religiously anywhere and feel unable to explore my spirituality in public religious settings because of the "special needs" status so often afforded disability. If there were a Unitarian congregation anywhere remotely near my home, there's a chance I could work something out, but I live in a conservative rural area and there is no thoroughly liberal church available to lessen the overall dissonance and make me feel welcome enough to belong. Maybe that's optimistic or wishful thinking about Unitarians. I had mostly good experiences with a congregation in Arizona when I visited it, though it seemed less challenging mainly because I was able to attend with openly lesbian friends. Acceptance of all kinds of difference is spiritually connected -- this I know.

Hugo Schwyzer, blogging about his friend Chris' post and his own religious beliefs writes:

Do I pray for non-Christians? Sure I do. Do I tell them about it, as if I’ve done them a special favor and tucked the spiritual equivalent of a $20 bill in their purse when they weren’t looking? No, I don’t.

He describes how he sometimes carefully parses his words to convey his loving thoughts to people in ways that don't distract by imposing his religious beliefs. I'm much more uncertain about my relationship to prayer, yet less careful of what I say to others going through difficult times. Ironically, that's a reflection of my ambivalence rather than any form of religious certainty. I certainly don't push any particular religious doctrine (since I don't have one) but to me it feels more like using a French phrase in a sentence -- if infrequent and unpretentious, only a little cultural conversion is required. Then again, I also don't offer these good wishes unless I've been told of actual suffering and hardship, as opposed to something I assume.

Disability Carnival #8 at Medical Humanities

Yep, I'm late to post this, but all the links are over there, waiting to be clicked.

And my fellow Minnesotan Mark Siegel of The 19th Floor is hosting the next one on February 22 (deadline the Monday before) and the theme is Employment.

BTW, the widget available for putting a permanent link to the Disability Carnival on blog sidebars is utter crap. Witness it here.

I'd like to propose that anyone with even marginal talent and an idea that seems inclusive of the broad term "disability" try to make one we can all use. Or make several. I'll give it a go too.

Update: Here's my best effort for today:



Visual description: A photo shows a simple, nonstandard parking lot sign that reads, "Somewhat Disabled." The words I've superimposed on the photo below the sign are "Disability Blog Carnival (come share the uncertainty)"

Saturday Slumgullion #27

Lots of news articles to share:

From the AARP Bulletin, June 2004, "Suing to get out in the world: San Franciscans break out of nursing homes to live on their own" -- Yep, the story is over 2 years old, but it's worth a read.

This is current. The Associated Press reports this news from LA police: Hospital van spotted dumping paraplegic man on Skid Row. Homeless, without any wheelchair, dragging a "malfunctioning colostomy bag."

An assisted-suicide bill meeting stiff opposition in Hawaii legislature. Variations on this bill have been presented in Hawaii since 1999.

From The Oregonian, the story of the Portland death of a schizophrenic man and the civil rights lawsuit against the police procedures surrounding his death.

A CBS News video from New York Fashion Week featuring a show of disabled, wheelchair-using models. Par for fashion in general, the main woman in the feature seems to live quite a bit more poshly than most of us (she owns her own restaurant and has a huge, beautiful home), but this is a good example of the longing and perceived longing of disabled women to fit into our culture by being seen as more stereotypically girly and feminine. And yet, this is a stereotype-challenging piece with regard to disability.

Poynter Online, a site discussing the profession of journalism, has an article about coverage of the case of Ashley X which includes an interview with bioethicist Arthur Caplan. But read it for the feedback which follows and includes thoughts of actual disabled folk.

From Astoria, Oregon, disabled students and the obstacles faced at a local community college that may have to move to meet long-overdue ADA standards:

The nursing department was relocated and supplied with a lift. A lift was added at the library for wheelchair-access to the second floor. But Hoagland-McGee still can't reach the basement without going outside and down a hill, on a slope that exceeds the ADA-required limits.

She can enter Towler Hall, but mainly just one hallway. To move elsewhere, she has to go outside, even in the snow.

Remodeled restrooms and wider hallways allow wheelchair access at Fertig Hall, but to get there from Towler, where many courses are offered, Hoagland-McGee must go outdoors and wind her way up a steep hill, in the street - the sidewalk there has no wheelchair access - continue up a driveway and essentially double back toward the building on higher ground.

"It's just not practical," she said.

The state-operated Rosewood Center of Maryland may be closed following a report of abuse and inadequate care:

[Rachel London, Maryland Disability Law Center attourney and author of a recent report] cited the example of a deaf patient named Jason who had been without an interpreter for much of his time at Rosewood and had been restrained for bad behavior with a "safety coat," which is similar to a straitjacket.

"These restraints incapacitate Jason's hands, his only means of communication," London wrote.

From Lancaster Online, a Lancaster County, Pennsylvania, apartment complex is being sued over ban on seeing-eye dogs.

Why can't we be like the Brits? Desperados is yet another TV show across the pond that features disabled folks.

Darius Goes West -- From the site: "Darius Weems, a 15-year-old with Duchenne Muscular Dystrophy, had never left his hometown of Athens, Georgia. In the summer of 2005, he and a group of young college students traveled across the country in a wheelchair-accessible RV to test accessibility in America. Their ultimate goal was to reach Los Angeles and convince MTV's hit show, Pimp My Ride, to customize Darius's wheelchair. Along the way, they found joy, brotherhood, and the knowledge that life, even when imperfect, is always worth the ride."

From The Herald, UK: "I'm blind, but there's no need to talk to my dog"

From NPR: "Examining the inner life of the 'lonely patient' " -- On a doctor's nonfiction exploration of chronic pain and illness.

From the NYT: Emmanuelle Laborit and deaf theater in France.

From the St. Paul Pioneer Press: Health problems linger for 9/11 workers.

And some excellent recent blogging:

David at Growing Up with a Disability writes about his experience with jury duty.

Gerilyn at G in Sri Lanka writes on the her observances of the lives of disabled folks in Kandy, Sri Lanka.

At Soli Libri, a brief review of Pearl S. Buck's The Child Who Never Grew. Apparently, Buck's daughter had a severe disability.

And last, Chronic Babe -- "The question of the day remains: May I touch you?" It should be obvious right? If you have to ask. . . .

Doctors involved with Ashley Treatment not as unified in support as previously indicated

From today's Salon.com, Rebecca Clarren reports in "Behind the Pillow Angel" that:

Doctors at the Seattle hospital that operated on a disabled girl to keep her from reaching sexual maturity -- the controversial "Ashley Treatment" -- were more troubled by the procedure than has been reported previously.

While it's not paticularly surprising that some of those on the ethics panel did have and do continue to have misgivings both about the specific case and the broader ramifications of the Ashley Treatment, the details of those misgivings are an important addition to the debate, which has frequently included declarations that the situation must be acceptable because a panel of experts signed off on it.

From the Salon article:

The committee members met Ashley and watched her interact with her parents. They saw her in a wheelchair and how she responded to her father's voice. "We got to see this little girl and see a little slice of what her life was like," Diekema told Salon. "It's very clear that Ashley's life is pretty small, that it's about her family. It's not about running around on the playground or dating. Her life is what a 3-month-old's life is like."

After Ashley and her parents left the room, the committee spent two hours in debate. At the end, no one voted with a show of hands. But in the ensuing discussion, the air was fraught with tension. The committee grappled with the following questions. How does keeping Ashley smaller help her? Does the treatment take away anything important to Ashley's own life?

Dr. Douglas Diekema has been the public face of the Seattle hospital, charged with explaining and defending the medical institution's actions, but statements made by Ashley X's parents on their public blog have apparently characterized the situation -- and the treatment's future for other children -- in ways problematic for hospital and those who were on the ethics panel. Again from the Salon article:

The public omission of the debate within the hospital and at the ethics committee results in part from federal medical laws to protect patient privacy. But because the public has been left unaware of the nuance and complexity of the ethical debate within the hospital, doctors worry that other disabled children could be more easily subjected to the Ashley Treatment. (On their blog, Ashley's parents write: "It is our hope that this treatment becomes well accepted and available to such families.") It was in part this fear of the case setting a precedent that initially spurred doctors at the Seattle hospital to question the surgical procedures.

"There were a number of people who were not very comfortable with the idea, and other people who weren't comfortable with it at all," said John McLaughlin, director of the neurodevelopmental program at the hospital. "In the end, the parents' articulate and assertive approach to wanting this done is what carried the day for that one child. However, most of us have major reservations about it for anyone else. My bottom line is that this is one more example of well-intended, but poorly thought-through treatment of kids with disabilities."

Put more succinctly, as her guardians, the hospital gave the final authority to Ashley's parents because they didn't have better medical solutions than the growth attenuation that was proposed and didn't necessarily believe it was a good idea at all.

Most troubling (and though I've seen it discussed on disability listservs, this article is the first I've seen to note this) has been the lack of candor about the whole procedure, from the actual medical treatments included in the endeavor to improve the child's (parents'?) life to the full process of the ethics committee:

What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland. "The real question is: Is there any benefit to this treatment?" said Nickel. "I would have counseled them to wait, to sit back and see what happens over a year because this child might accomplish most of this on her own."

The article also never mentions the breast-bud removal, ostensibly the most contentious element of the Ashley Treatment. (The parents' blog provided that piece of the story.) Taken as a whole, the Ashley Treatment may appear more beneficial than it really is, said Dr. Christopher Feudtner, a pediatrician and bioethicist at the University of Pennsylvania. That's troubling because the treatment, he said, "is prone to abuse."

"We're manipulating her body so that she can fit in better to society, while neglecting the inner manifestations of pain, and that's a radical extension [of current medical philosophy]," Feudtner added. "Some child, somewhere, with much less severe mental disability than Ashley, will get this treatment. It will happen and there needs to be more people standing up and saying this will have side effects we didn't anticipate."

On the ethics panel (italics mine):

Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."

The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.

Also, the article reports that the Seattle hospital alone has had inquiries from three other families asking this "treatment" since the story went public.This puts the hospital and it's ethics panel in rather a quandry, I'd think, since the original news Dr. Diekema gave was that the procedure made perfect sense and was agreed to be beneficial by all involved.

Flannery O'Connor: The "crippled hillbilly Emily Dickinson"

It's nice to know I have people who read my blog, but even better is to know they are smart folks thinking through complex ideas even when not commenting here. One reader alerts me to the recent New York Times travel piece where reporter Lawrence Downes visits Flannery O'Connor's Georgia and compares it to the gothic and captivating South or her short stories and novels. Here's the link to the NYT article, which itself links to both a brief slide show of O'Connor's farm near Milledgeville, GA, and an excerpt from her short story "A Good Man is Hard to Find." And because NYT links sometimes frustrate or fail as they age, here's another source for the same article.

From the article:

Her output was slender: two novels, a couple dozen short stories, a pile of letters, essays and criticism. But her reputation has grown steadily since she died. Her “Complete Stories” won the National Book Award for Fiction in 1971. Her collected letters, “The Habit of Being,” banished the misperception that she was some sort of crippled hillbilly Emily Dickinson. They revealed instead a gregarious, engaged thinker who corresponded widely and eagerly, and who might have ranged far had illness not forced her to stay home and write.

From my reader, in an e-mail:

She WAS a crippled hillbilly Emily Dickinson, and there ain't a damn thing wrong with that. It's as if [Downes] has to assure himself she is "more" than that, or he can't deal with his own admiration. The idea that a crippled hillbilly knows more than he does about sin and redemption, the meaning of life, the horrors of deception, etc. ... well, that just can't happen. So, he elevates her, supercrip style, yet even ultimately denies her that full status.

In fact, though he fails to make the connection between O'Connor's lupus, her use of crutches to get around and the frequent disability of her fictional characters, Downes does list several memorable ones:

O'Connor's characters shimmer between heaven and hell, acting out allegorical dramas of sin and redemption. There's Hazel Motes, the sunken-eyed Army veteran who tries to reject God by preaching "the Church of Christ Without Christ, where the blind don't see, the lame don't walk and what's dead stays that way." Hulga Hopewell, the deluded intellectual who loses her wooden leg to a thieving Bible salesman she had assumed was as dumb as a stump. The pious Mrs. Turpin, whose heart pours out thank-yous to Jesus for not having made her black or white trash or ugly. Mrs. Freeman, the universal busybody: "Besides the neutral expression that she wore when she was alone, Mrs. Freeman had two others, forward and reverse, that she used for all her human dealings."

Then he says, emphatically: "These people can't be real." Much like O'Connor herself, who -- thank God -- is not the "crippled hillbilly Emily Dickinson" he was afraid she might be.

HIV discrimination in health care

From columnist Deb Price at detnews.com:

Posing as discharge planners from hospitals or as HIV-positive patients, they contacted skilled nursing facilities, plastic surgeons and obstetricians in Los Angeles County.

What they found is shocking: 55 percent of surveyed obstetricians, 46 percent of nursing facilities, and 26 percent of plastic surgeons told Sears' student sleuths that they had a blanket policy of rejecting anyone with HIV.

Excuses offered for discriminating: inexperience with HIV and inadequately trained staff, and the claim that HIV patients always need "specialists."

Undergraduate memory

In my freshman year at Arizona State, I took a semester of art courses that assured me that I was not destined to live the life of a professional or struggling artist. After class, my dorm was in the same direction as the parking lot for a classmate who was, without doubt, an artist. She was into neon sculpture at the time.

Our chats as we ambled across campus in the morning heat consisted of her sharing the current unnatural hairstyle of her vagina (sometimes pink, sometimes green) and my trying to convince her that I "went out" like normal people do.

"Do you ever go out?"

It was a question I got often from classmates and it always baffled me. Have you not found me here in public attending the same events as you? What about me cries hermit and recluse?

The question was always intended to probe the life of a disabled college classmate, though significantly, it rarely led to the questioner's wanting to "go out" somewhere with me. Maybe it was really a larger, more practical question that they never quite asked: Did you know you're the first cripple my age that I've ever chatted with? How would you get into the clubs I go to? What's your life like?

My college roommate, Marian, was pretty much the first cripple my age I ever really talked to. I didn't go to most of those clubs. I usually settled for the accessible portion of small local bars. Occasionally nondisabled friends carried me into the dance clubs, but it meant leaving my scooter behind and dancing with my manual chair for the night. Fun, but an extraordinary physical effort for me. And I could rarely pee in those places. My evening ended whenever my bladder cried "Uncle." This was the late '80s, pre-ADA.

I went to the movies almost every weekend, sometimes more than once. Often it was the cheaper midnight showing of the latest film. Sometimes it was the double-header at the local dollar theater. Man, that place was gross for traveling on wheels. When I went to the show with my nondisabled friend, Sandi, she would stand on the back of my scooter or I'd turn the seat 45 degrees sideways and we'd share it, giving the Queen Wave to everyone who honked at our two-person sidewalk parade.

Most of my nondisabled friends hopped on for a ride now and then. One guy, Pat, used to take wild screaming scooter rides by himself through the parking lots after I'd transferred into his car, and while other friends stood by to help hoist it into his giant dilapidated trunk. Brian and I usually played a little game where when we saw each other on the quad, I would fly straight at him as if I couldn't control my machine and he stand faithfully still as my chair raced toward his shins, but stopped just in time to gently touch them. It freaked other people out.

There was this guy in a big black power-tilt chair who used to zigzag through the campus crowds and seemed to be steering randomly. He freaked the hell out of me, but perhaps he was playing the exact same game.

Yeah, I "went out," but there was a different pattern to it. Sometimes it involved the public buses, and then, rarely would nondisabled friends come along. Those were gimp outings, or shared with poorer nondisabled friends who had never yet owned a car. House parties, dorm parties, movies, shopping, eating out, and the local Improv when it moved in. I didn't do many of the Spring Break trips -- usually just around Arizona instead of beaches in Mexico.

Did I "go out" like normal people do? Yes. And, I guess, no.