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.

Random Parts Replacement Fun

Ventilator traded in for one which does not randomly turn itself off:

Check.

New ventilator's obscure nonprescription default settings changed (by an adventurous nurse!) to match the other one I have here at the house so that I can use it without getting an immediate headache:

Check.

Trach changed by my mother while the local doctor watches so that she can stop having nightmares about what might have gone wrong during the emergency switch last month:

Check.

Appointment to get my scooter fixed so that it will stop drifting backwards randomly and risking sudden trach/vent tube crisis:

Check.

Plans with a local welder to fix the rack that holds my vent to my scooter so that it will stop threatening to fall off randomly:

Check.

Appointment for routine feeding tube Parts Replacement Event:

Call tomorrow.

Whew.

Attention

Go tell Amanda of Ballastexistenz that she rocks. Her site is a Yahoo pick of the week!

disTHIS! film series

This coming Wednesday, February 8, 2007, the disTHIS! film series in NYC will screen two short films on love, sexuality and disability.

Disabled & Looking for Love

and

The Crippendales

Info on the films and the location of this monthly screening of disability films available here.