The Gimp Parade

Health care and non-compete agreements

2012-01-09T19:21:00.016-06:00

Two years ago this week I got caught up in a legal dispute that briefly threatened my life. Obviously, I'm still alive, but a version of what happened to me could happen to anyone who consumes health care in America, so I figure people should know a little about it.

First, a little background on me: Because I have a sort of muscular dystrophy that weakens my diaphragm muscles, I've used a trach and ventilator to breathe for the past six years. Generally, lungs react to this artificial breathing set-up by making secretions that must be suctioned out of the lungs several times each day by a trained assistant using sterile gloves, a sterile catheter and a suction machine. I have 24-hour home care assistance for this and other help I need. But the most important thing my nurses do is to keep me breathing, put the circuit tubes between my trach and my vent back together if they fall apart, troubleshoot vent alarms and keep me from drowning in my own secretions. Life is better than you might think, but I have to have this care to keep breathing.

So. This dispute between the business partners of my vent-specializing home health care agency eventually led to my choosing the management of one set of partners over another, and that's when their legal dispute began to directly involve me. At that time my nurses all worked only with me within the agency. And I'm the only vent client my metro-area-based agency has had in my small town 60 miles outside of the Twin Cities. So my nurses followed the job and switched agencies with me in order to keep getting a paycheck. The agency I departed sued all my home care nurses for breach of a non-compete agreement (NCA). They also sought a temporary restraining order (TRO) to keep all my nurses from showing up at my house to work and, you know, keep me breathing.

Are you familiar with non-compete agreements? They are contracts between an employer and employee that restricts what the employee can do after they leave the employer for a different job. It's meant to protect an employer's business, client list, company secrets, etc. It requires the employer provide the employee "reasonable compensation" and typically restricts competing work within a geographical area for a set time.

It used to be that NCAs were mostly just for tech companies protecting research and development secrets, but increasingly these agreements are used by all kinds of businesses now, including for-profit health care businesses. What this means for ANY health care consumer is this: in the terms of an NCA all clients/patients are considered business assets. If your health care provider -- primary care physician, psychiatrist, obstetrician, oncologist, surgeon, dentist, etc. -- is suddenly barred from having you as a client because they change partnerships/clinics/employers and there's an NCA, you have no legal standing in a dispute between employer and employee. (Your provider could also suddenly lack access to your medical records, by the way -- one of many reasons you should always have copies of the most vital aspects of your medical history.) Need some sort of life-saving medical care and want the professional who knows your case? Your individual preference to stay with that medical professional likely will be no part of the legal discussion about financial harm to the employer and the livelihood of the employee.

An exception is if the legal discussion includes consideration of the "public welfare". For example, if the medical specialty of the employee in question is rare in your geographical area, an NCA may be disallowed or limited in scope to protect the public welfare. And some states disallow NCAs involving all physicians. But the "private welfare" of one individual client/patient is not "the public welfare" and your right as an individual to choose your health care provider may not be considered.

State policies vary wildly. All employment NCAs in California and North Dakota are disallowed. Florida very seriously favors employers over employees. Colorado, Delaware, Illinois and Kentucky disallow NCAs for all physicians, Tennessee and Texas protect some physicians, New Jersey disallows NCAs for psychologists, and Massachusetts disallows for physicians, nurses, psychologists and social workers.

I'm in Minnesota and my nurses being sued as third-party defendants for violation of their NCAs was considered by the court a viable part of a big messy case. I have a lot I could say about that messy case that complicated the lives of hard working people just trying to make a modest living by giving me knowledgeable and competent health care, but I'll try and stick to the topic of NCAs and health care here.

In my situation, I wrote an affidavit to the court about how my life would be endangered by the temporary restraining order (I needed both a lawyer and a notary public for that.) Then I showed up in court for the hearing when the TRO was being considered, even though -- and I find this both galling and very key to my whole point -- without me present, discussion of the TRO and my life-saving daily care would have gone on without me. Remember, as neither plaintiff or defendant in this case I had no legal right to participate. Although I'd like to believe the judge wouldn't have ruled on a TRO that interfered with life-saving medical care, I suspect it was my presence in the courtroom that day (with my vent huffing and puffing loudly) that got my former agency to immediately withdraw the request for the TRO. I do not know for sure if the judge ever read my affidavit.

After months and months, the full case settled and the question of the NCAs and their validity was never ruled on. There's a Minnesota Home Care Bill of Rights (MN statutes, section 144a.44.) that states that any client has "The right to choose freely among available providers and to change providers after services have begun, within limits of health insurance, medical assistance, or other health programs." The conflict between that statute and an NCA was likewise not adjudicated or even debated at the court dates I attended. In any case, those matters would have been addressed long after the TRO, if the TRO request hadn't been withdrawn.

Things might have turned out differently. I might not have had a nurse who showed me the complaint she was served. I might have been unable to read it and understand the immediate threat of the TRO. I might not have had access to a lawyer for the affidavit, or a ride to the courthouse to attend the day the TRO was brought before the judge. I might not have had such loyal, brave nurses who stuck with me through months of threats of financial penalties to each of them. I might not have had such an excellent home care agency to choose as I currently have and been stuck under the management of the agency that aimed these troubles at my nurses and me. But because consumers of health care are basically the collateral damage of NCAs, you don't hear many stories like mine.

In fact, Googling "non-compete and health care" offers mostly lawyers selling their expertise and almost nothing about the clients every enforced NCA against a health care provider must displace. There are a few cautionary tales besides mine, however.

In May 2010, Madeleine Baran of Minnesota Public Radio reported on the story of Nadine Parker and her two daughters. The eight- and ten-year-old girls had been seeing a mental health professional for about a year and were finally experiencing some progress with troubles including bedwetting and self-injury when an NCA came between them and the one counselor they had developed trust in. The only current remedy in Minnesota for these children's traumatic loss of support appears to be litigation.

[Mental health] advocates also said that the situation serves as a valuable lesson for mental health consumers. Many clients, they said, have no idea that their therapist, case manager or other provider would not be able to see them if the provider switched to a new agency.

"Realistically, the average client is not going to be thinking that far ahead," [Frederic] Reamer, [a national expert on social work ethics and one of the chief authors of the code of ethics for the National Association of Social Workers] said. "It's usually, 'I'm depressed. I need help. Can you help me?' [Not] 'Oh, by the way, do you work in a place that has a non-compete?'"

In the 2006 Kansas case Caring Hearts v. Hobley and Hardy, the appellate court upheld the original ruling in favor of the employer and against the defendant home care nurses. In reviewing the issue of "the public welfare" the appellate court stated (italics mine) that "there is no evidence that public welfare would be harmed by enforcement of the agreements. Hobley and Hardy did not present evidence at trial that the desires of any of their former patients would be thwarted if an injunction were issued and they were denied care that they specifically desired to receive from Hobley and Hardy. But even if there were such evidence, the issue is public welfare, not the private welfare of an individual patient."

Does the court imagine that the elderly clients do not care who provides their health care? The court doesn't consider it relevant.

So, how to avoid losing your oncologist halfway through your chemo treatments? How to keep the social worker your mentally troubled child is getting support from? How to hang on to the primary care physician who has seen you through the birth of all your children? There aren't any great answers unless you live in a state that has a statute disallowing NCAs.

But here's my list of things you can do to protect yourself as much as possible:

Ask your health care provider if they are bound by a non-compete agreement.
Ask if they have any plans to leave the business where they are currently employed.
If possible, choose a provider not bound by any NCA.
Repeat this process if and when you add any new health care provider to your life.
Repeat this process if and when your health care needs become more extensive or dire and continuity of care becomes more vital to your health.
Talk to your elected officials about protecting patient continuity of care by limiting or disallowing NCAs for medical professionals in your state.

Other stuff to know about NCAs:

The American Medical Association believes "restrictive covenants" to be unethical:

Covenants-not-to-compete restrict competition, disrupt continuity of care, and potentially deprive the public of medical services. The Council on Ethical and Judicial Affairs discourages any agreement which restricts the right of a physician to practice medicine for a specified period of time or in a specified area upon termination of an employment, partnership, or corporate agreement. Restrictive covenants are unethical if they are excessive in geographic scope or duration in the circumstances presented, or if they fail to make reasonable accommodation of patients’ choice of physician. (AMA Code of Medical Ethics, Opinion 9.02)

A physician in internal medicine in rural Idaho where doctors are scarce writes about taking a two-year sabbatical as the only reasonable way she can find to escape an NCA.

An academic paper on how NCAs affect the labor market for physicians. (If the math scares you, skip to page 27 for the research conclusions.) Spoiler: States most supportive of NCAs have fewer docs per capita.

In 2005, the Tennessee Supreme Court ruled that NCAs for physicians were against public policy and unenforceable. In response, the state legislature has repeatedly tinkered with statutes mostly having the effect of overruling that court decision and allowing NCAs for most physicians.

One researcher finds that NCAs often derail careers.

For a good primer on NCAs read the paper "The Law and Policy of Non-Compete Clauses in the United States and Their Implications" by University of Illinois professors Jay P. Kesan and Carol M. Hayes.

Friday Music: Mark E. Smith and The Fall

2009-04-03T00:12:00.001-05:00

The times they are a-changin', just a little, I think. The music news site TwentyFourBit reports:

"Taking the stage in a wheelchair after your hip breaks for the second time is pretty punk rock, we think."

Image description: A black-and-white photo of Smith giving a grimacing smile or snarl to the camera. He's 52 now (though he looks older) and missing a couple teeth.

When Mark E. Smith, lead singer and sole original member of the post-punk rock band, performed with his current line-up for The Fall this past Tuesday and Wednesday, he sang first from the wheelchair he is currently using and then, for the end of the Wednesday show, from the dressing room backstage. NME has further details, including a somewhat less punk rock subheadline (in italics):

Recovering singer adopts unusual singing position as he recovers from hip injury

The Fall played London's KOKO last night (April 1), with Mark E Smith performing most of the gig from a wheelchair - before he abandoned the stage altogether and sung from his dressing room.

Currently recovering from a broken hip, the frontman, dressed in a black leather jacket, wheeled himself around the stage to alter settings on the band members' equipment before moving to sit behind a guitar amp for most of the concert.

The last three songs were performed with Smith singing from the dressing room, and changing the lyrics to 'Blindness' to say: "I refused to go onto the stage at one point / You'll get over it in the morning".

The song "Blindness", from the 2005 album Fall Heads Roll, has rather impenetrable lyrics (at least two previous versions) where the first-person narrator only has one leg. I am not enough of a cult follower of The Fall to know if this is or is not a reference to Smith's first hip injury in 2004 when he completed part of an American tour from a wheelchair before pain and medication reportedly caused some canceled dates.

Anyway, here are those lyrics:

BLINDNESS

The flag is evil
Welcome: living leg-end

I was walking down the street
I saw a poster at the top

I was only on one leg
The streets were fucked

And the poster at the top of street said:
“Do you work hard?”

I was only on one leg
The road hadn't been fixed
I had to be in for half six

I was only on one leg
My blue eyelids were not (?)
There was a curfew at half nine
For my kids

There was a poster at the top of the street
Encapsulated in plastic
It had a blind man

So I said: “Blind man, have mercy on me.”
I said: “Blind man, have mercy on me.”

The flat is evil and full of cavalry and Calvary
And calvary and cavalry.

“Do you work hard?”
It said, “I am from Hebden Bridge.
Somebody said to me: I can't understand a word you said."

Said: “99% of non smokers die”
“Do you work hard?”
“Do you work hard?”

I was walking down the street
And saw a picture of a blind man

The flat is evil
Of core? cavalry and calvary

Of core(?)
Blind man, have mercy on me
Said, blind man, have mercy on me

??
I am a ?
My blues eye get…ID/I get
My curfew was due half eight
Now its half past six

My curfew is at 9:30
I said. “Do you?”
Blind man! Have mercy on me
Blind man! Have mercy on me
Blind man! Have mercy on me

I’m on one leg
My eyes can’t get fixed
And my kids
Can’t blue eyes get fixed

Blind man! Have mercy on me
Blind man! Have mercy on me

BLINDNESS (Peel session version)

And all humans
Cavalry or calvary
And not a drop of water
Or paper
Or paper
J.W. said "walking bass, walking bass"
Don't forget, don't forget
He expected Aristotle Onasis
But instead he got Mr James Fennings from Prestwick, in Cumbria
Do you... reflect this evil?
Thought of cavalry and calvary
His first appearance was on Moscow Road
The poster came at first
At first I thought it was just a poster
I was talking to James Seymour
Eyes wide open
The neck was slightly dislocated
But then I walked up the street
There was a repellent plastic
Said poster with a picture
Do you work?
I was on one leg
At the top of the street
There was a poster
A plastic front
From Moscow Road it came
From Deansgate it came
From Narnack Records it came
I was on one leg
I had to be in by 9.30
I said walking bass
Paper times 2
Paper times 2
Paper everywhere and not a drop of water to be seen
I said
I was by the ocean
I saw a poster
I am [?]
I am [?]
Everywhere I look I see a blind man
I see a blind man
Everywhere I look
I see a...
I can't get my eyes checked
My blues eyes can't get checked
I'm only one leg
I said to poster, "When's the curfew over?
I said, "Blind man, have mercy on me."
I said, "Blind man, have mercy on me."
Blind man have mercy on me
Oh Great One I am a mere receptacle
The egg tester for your sandlewood and other assorted woods
In dark green
Blind man have mercy on me
I got a metal leg - truth
Flat is the evil of calvary and cavalry

Anyone want to interpret that?

About the times a-changin': If singing from a wheelchair is now considered "pretty punk rock", recall that in 1974 Robert Wyatt of Soft Machine, performing on the British TV show Top of the Pops just a year after an accident left him paralyzed, was considered "not suitable for family viewing" because of his wheelchair.

On the other hand, when has punk rock ever been suitable for family viewing?

Further sources to enjoy:

BBC News interview with Smith in May, 2008

The Fall wiki

Mark E. Smith wiki

the band's website

YouTube video of "Victoria", perhaps The Fall's most recognizable hit, from the 1988 album The Frenz Experiment

YouTube video of a live performance of "Blindness"

YouTube video of a concert performance of "Totally Wired" from the 1980 album Grotesque (After the Gramme)

Sara

2009-03-30T23:50:00.005-05:00

There are those people online that you never get to meet but suspect could be your very best friend if they only lived closer. I tend to work them into daily offline conversations sometimes, with references that don't sound as strange as they used to ten years ago: My Friend From Chisago County (only she doesn't live in Chisago County anymore), SuezBoo in South Africa, The Dancer in NYC, Sara in Massachusetts (you know, the one who takes photos of love potatoes).

You hope to travel, meet for lunch. You trade notes and laugh out loud, long-distance, at their clever crush-worthy minds.

You are heartbroken when you finally understand that the small portion of their greatness that you already got to see is all you will be so lucky to share.

Friday Music: Bradford Cox, Deerhunter, Atlas Sound

2009-02-06T00:47:00.003-06:00

"I've always been a leader of awkward people," Bradford Cox says.

Cox, lead singer (and also guitarist, keyboardist and player of various other stuff) of Atlanta band Deerhunter and solo-project Atlas Sound, is a musician whose personal appearance, live stageshow presentation, music media critiques and band song lyrics all bubble over with a freakshow differentness developed from the experience of adolescent illness and disability. Cox has said as much himself.

Image description: A color photo of Cox against an all-white background. He's sitting, knees bent and arms upraised, facing the camera and smiling. He wears jeans, tennis shoes and a striped sleeveless shirt that reveal long limbs and skinny biceps.

Cox was born with the genetic connective tissue disorder Marfan Syndrome. He's 6'4" and so shockingly thin that his appearance has been the relentless subject of music reviewers' commentary. And he's turned that around and used it for dramatic effect with about as much ease as possible. In an interview with Rodney Carmichael at Creative Loafing, Cox says:

"I hate my body just as much as everybody else comments on it or hates it, you know. I mean, I think most people [hate their bodies]. . . . [Marfan Syndrome] affects your personality, because a lot of your personality is a product of your self-image."

But he also says, (and I so love this):

"I'm not trying to exploit myself to provoke people or shock people. But I'm not shy at the same time. So I guess I started realizing what effect it has on people. ... I say 'fuck it' and try to hit the ceiling with everything you do. And if you have something that one person would consider a handicap, I would say, like, just try to make it explode, you know?"

What Cox calls hitting the ceiling or exploding is his live band performances. From Seattle Weekly's Andy Beta:

Cox believes Deerhunter's reputation is partially founded on this freak-show allure. "I can just walk onstage and people will be, 'What the fuck?'" he says in between drags on a cigarette. "If anything, I wouldn't mind representing something for people, representing sickliness, fucked-up-ness. . . . At least it comes natural to me. And I'm not Marilyn Manson."

From the Phillyist:

[Deerhunter's] stage presence was interesting. There was no banter, but they didn’t need it. The guitarist, who wore a shirt that read “Just Say YES” in the tradition of the famous anti-drug campaign, attacked his instrument with the same intensity as his counterpart, who wore a black and white striped shirt that called to mind the Hamburglar. Lead singer Bradford Cox was wearing a dress. Yes, a Laura-Ashley-minus-the-lace sleeveless number with green and earth tone-colored print. His wig was draped over his face so he appeared to be an apparition of hair, limbs, and grandma’s housedress.

It was one of the oddest concert experiences we’ve had. We were equal parts attracted and repelled. Trying to make sense of it in our mind, we kept coming back to an image of Carrie, doused in a bucket of pig's blood. Horrifying, and yet wouldn’t that warm, viscous liquid be kind of comforting?

That's maybe an apt comparison, since Deerhunter's critically-acclaimed 2007 album Cryptograms is very much about an adolescence spent in hospital. On the band's blog, Cox explains the lyrics of the song "Spring Hall Convert":

So I woke up
In a radio freeze
Occupied by a couple of girls
I knew from
Way back when, where
Oh, I had my face like the ocean
So I’d radiate but
Too much radiation
I walk around like a walker
And like a walker
Always choosing where to go
And where to be

Radiation

Too much radiation

So long loneliness

So far from home

(When I was sixteen I was hospitalized for extensive surgeries on my chest ribs and back because of marfan's. That entire summer was like completley erased. I was in a coma for a couple of weeks. I got to really understand what its like to not be well. I've always sort of understood, growing up with marfan's, but this was hardcore shit. I wrote this song transposing this high school acid trip where i saw my two best friends back then, Sarah and Chrissy, bathed in this golden spring light in the hallway of my highschool and felt really close to them, like we were sisters. I always felt genderless around them. I actually took a photo of them in that hallway that day which i will find and upload. If the song could be captured visually, this photo would be it. Anyways, I was trying to transpose the concepts of illness (in this case I was writing from the perspective of someone going in and out of conciousness during chemotherapy, and how they would miss their friends, their past experiences, and anything that reminded them of normalcy, or a time before misery. Nostalgia as anesthetic)

And the song "Hazel St.":

There was no connecting my actions with words
In the bright sunlight, the movement of birds
The car ride home, was blinded again
The light would not focus the light would not bend
There’s no use calling I know what you’d say
Over and over it ended today
Worlds lost their meaning and could not explain
Why the subject was always just out of frame

I was sixteen
I lived on Hazel Street
Protect me from the scene
And guide me with your heat

Ice forms in sheets
There melting in the street

(This goes back to the whole sixteenth year of my life spent in a hospital bed thing. I have major issues about it and have recently started going to therapy and am back on antidepressents. Obviously as so many of you have noticed, my body is fucked up. I never really recovered from all that surgery and stuff. This song is kind of like a jack off fantasy about what it would have been like if i had been the person i wanted to be physically (i.e. healthy, cute, whatever...) and lived on Hazel St which is this quaint little street of the town square in downtown Marietta, Georgia.. It's just a fantasy about being normal. Its kind of prefaced with an argument or a conflict or a relationship breakdown, the kind of things that make me fantasize about having been born normal even more.)

Cox's solo-project Atlas Sound's 2008 album, entitled Let The Blind Lead Those Who Cannot See includes the song "Quarantined," with these brief, repeated lyrics:

Quarantined and kept so far away from my friends.
I am waiting to be changed.

Deerhunter's 2008 releases are the (again) critically-acclaimed Microcastle and it's full-length companion Weird Era Cont.

Creative Loafing's Carmichael writes:

To his credit, Cox has turned his inherent weakness into a strength. And the result is as vivid as Deerhunter's sound, which is way too hypnotic and eerily transcendant to be overshadowed, even by Cox. On the contrary, the lead singer's physical appearance is the perfect complement to the wonderfully weird music the band makes. Whereas one without the other would only be plain old weird at best.

Weird is how I feel about the music. Some of it I really enjoy and other songs seem like mostly noise to me. But I'm interested in seeing if repeated listening will alter that at all.

Check out some YouTube if you like:

Music video for "Strange Lights" from Cryptogram

Music video for "Agoraphobia" from Microcastle

"Spring Hall Convert" and "Hazel St." live in Chicago

"Quarantined" from Let Those Who Are Blind Lead Those Who Cannot See

And other resources about Cox and his bands:

Wiki on Deerhunter

Wiki on Atlas Sound

Deerhunter blog, also Atlas Sound, mainly written by Cox

Rolling Stone magazine bio of Deerhunter

Winter at the Gimp Compound

2009-02-01T21:17:00.002-06:00

The holidays and the new year went well for me, though my computer needed some repairs that kept me from writing here for about a month. Happily, and for the first time in my 40 years of experience with expensive electronic equipment, my computer was still under warranty (by about five days!) and I got the disc drive replaced for free. Merry Christmas to me!

I had my feeding tube removed just before Christmas because I haven't needed it in so long and it seemed like the right time. In retrospect, I might have had it taken out a while ago if I'd understood the size and shape of it inside me a bit better. I have less indigestion and nausea with it not there to tickle my insides, so even though I expect to need the feeding tube again some day as my muscles continue to weaken, it's great to be without it for now.

Today was sunny with a pure blue sky and the snow melting off driveways. For much of the past six weeks I've kept inside and away from below zero temps that give the vent a worrisome little wheeze when out in the raw air. There's no way I know of to protect lungs from frigid air being pumped directly into them, minus the miraculous upper sinus warming system. So, I've been hibernating, reading, listening to audiobooks, watching LOST and Battlestar Galactica. And managing some little home care dramas I won't be talking about here.

I finally read Jessica Valenti's Full Frontal Feminism, which provoked so much blog controversy when it was published in 2007. It's a little anti-climactic to read it now, so long after all that discussion. I found it to be very basic, and almost entirely lacking in even the knowledge that disabled women exist -- disability is included in a U.N. laundry-list quote of women's issues, and near the end of the book Valenti mentions ability and age as two interests she won't get to talk about. But disability isn't in any other rollcall of women's issues elsewhere in the book, even when the other standards are named: race, religion, sexual orientation. Nor does disability come up when exploring the flipside of "choice" and how race and class (and disability) often mean that women in these categories are coerced out of parenthood rather than being denied birth control and abortion. None of the extensive resources at the back of the book were aimed at women with disabilities. Accessibility as a necessary part of all the activism Valenti touts was never brought up. Disabled women are invisible in this book.

I don't think it's a bad or useless book. Just rather alienating if you're not part of a specific young, white, straight, middle-class (or better), nondisabled sorority girl constituency of women it's meant for.

Anyway, my computer works now and I'm possibly staying home until Spring hits. So more blogging.

Music Friday: Antony and the Johnsons

2009-01-30T00:49:00.004-06:00

My newest music obsession is Antony and the Johnsons. Antony Hegarty is, as described by SignOnSan Diego, a "brawny-looking, transsexual Irish-American maverick with a wonderfully androgynous voice and a tremulous chamber-pop style all his own."

One song on the newest album, The Crying Light, is called "Epilepsy is Dancing." To fully appreciate it, read the poetry of the lyrics first:

Epilepsy is dancing
She's the Christ now departing
And I'm finding my rhythm
As I twist in the snow

All the metal burned in me
Down the brain of my river
That fire was searching
For a waterway home

I cry glitter is love!
My eyes pinned inside
With green jewels
Hanging like Christmas stars
From a golden vein

As I came to a screaming
Hold me while I'm dreaming
For my fingers are curling
And I cannot breathe

Then I cried in the kitchen
How I'd seen your ghost witching
As a soldering blue line
Between my eyes

I cry glitter is love!
My eyes
Pinned inside
Sea green jewels
Hanging like Christmas stars
From a golden vein

Cut me in quadrants
Leave me in the corner
Oh now its passing
Oh now I'm dancing

Then listen to the song. Many songs by Antony and the Johnsons have an operatic, cabaret feel, with Antony's soaring voice. This song is delicate, with piano, guitar and strings.

After just hearing it, if you're able, then watch the video from Pitchfork TV (NSFW):

Video description: From the record label: "Antony asked his friends the Wachowski Brothers to work with him on a video for his new single 'Epilepsy Is Dancing'. They in turn invited painters Tino Rodriguez and Virgo Paradiso to create costumes and a mystical environment and choreographer Sean Dorsey and his dancers to bring the dream sequence to life. Antony's artistic partner Johanna Constantine stars as herself in the role of 'Deer Monster'. The video was lit and shot by the up-and-coming directors of photography, Chris Blasingame and Banker White, and produced by Jim Jerome. The production team collectively named themselves AFAS. Please enjoy the fruits of their San Francisco art party."

The video begins and ends in an alley where a woman walks alone and sees a deer many yards ahead of her just as she has a seizure and falls to the ground. A colorful Midsummer's Night Dream-esque world of half-nude body-painted dancers awaken the woman, now painted silver and wearing a headdress of leaves and deer antlers, in a sensuous little orgy of dancing. Some wear carnivale type masks, as does Antony, whose head appears superimposed and flowers flow from his mouth as he sings. The dancers cradle her, carry and writhe with her, then set her down in a leaf-covered woodland with a male dancer very reminiscent of Shakespeare's Puck leaving her last, their outstretched fingers slipping from each other's grasp as the seizure causes spasms and the woman's hands curl. She wakes back in the urban alley with the real deer nuzzling her hand. Then she's all alone and rises and leaves, smiling.

Here's an alternate, touching live performance of "Epilepsy is Dancing," along with a brief interview and "Another World," a second song from the new album, from The Culture Show of the UK.

For another song about an epileptic seizure check out Joy Division's "She's Lost Control."

When the wheels make the man, part 7

2008-12-26T23:27:00.001-06:00

From newsday.com, we get this headline:

Woman accused in wheelchair death faces homicide charge

Yeah. The death was actually that of a human being, a man using a motorized wheelchair. It was a hit-and-run. The woman appears to have been intoxicated. Also, the man who died, Ranford Beckford, 51, was driving his wheelchair on the road's shoulder about a mile from his home.

My personal opportunities for driving along a roadside usually were caused by either lack of curb cuts or lack of adequate, accessible transportation. Or both.

Because you are nothing without your assistive equipment. See parts 1, 2, 3, 4, 5 and 6 of this series.

When the wheels make the man, part 6

2008-12-18T20:45:00.000-06:00

For the first time in this series, the wheelchair makes the woman instead of the man. Not really an improvement.

From the Australia Courier Mail, a headline about a man stalking a woman:

Man, 82, accused of stalking wheelchair woman, 65

Actually, both people in this report use wheelchairs though the headline characterizes only her as a "wheelchair person." If the news report can be trusted more than the headline, the woman's request in court to have the man designated as a stalker is based on one experience where the man "drove straight at her, swerving away only at the last moment."

That's understandably frightening. But in itself it could indicate the man's lack of driving ability of own wheelchair rather than stalking. The report doesn't indicate he followed the woman or repeatedly drove at her. If malice was intended, that would be reason to mention a wheelchair in the headline, with respect to the suspect and not the victim. It would be nice, when a news agency covers a story, if they'd not selectively use one person's status as a wheelchair user as a de facto indicator of victimhood.

Because you are nothing without your assistive equipment. See parts 1, 2, 3, 4 and 5 of this series.

When the wheels make the man, part 5

2008-12-17T21:05:00.000-06:00

From Dayton, Ohio, a man who uses a wheelchair burgles a restaurant four times in one week. Naturally, the headline about it reads:

Wheelchair burglar raids restaurant four times in week

It wouldn't have to read as if the man was stealing wheelchairs too. In fact, it wouldn't have to mention the wheelchair at all, except that is apparently what makes this crime newsworthy.

Here's an actual, alternate headline:

Police: Man In Wheelchair Is 4X Burglar

The body of both stories is exactly the same AP report.

Because you are nothing without your assistive equipment. See parts 1, 2, 3 and 4 of this series.

Things that crack me up #51

2008-12-17T01:03:00.005-06:00

Image description: A color photo of a nice little sign for restrooms showing a female figure, Wheelchair Dude (I consider "Dude" gender-neutral -- dooooode), and a male figure, all in variations of the classic access symbols. The sign has a brown wood frame and is in shades of brown, green, black and white. The female figure wears a brimmed hat and a brown and green dress. The male figure has brown pants and a black top with a white button-down shirt underneath. Wheelchair Dude's chair is white and she's dressed in black. Both Wheelchair Dude and the male figure wear sombreros. Arrows underneath the figures point, presumably, toward equally charming restrooms.

Photo posted to Flickr by mwboeckmann who also posted Viking Wheelchair Dude.

Things that crack me up #50

2008-12-10T00:48:00.002-06:00

Image description: A color photo of a sign that has Wheelchair Dude and several other access symbols in a row above writing in an Asian language, with English below that. Along with Wheelchair Dude there's a person with a cane in profile looking about to sit down, though there's no chair behind her. Also, there's an adult holding a child's hand and a pregnant woman. The English translation of the Asian writing reads simply "Please Use Anyone."

h/t to Shiva of Biodiverse Resistance

Tomorrow is Wednesday again

2008-12-09T16:20:00.004-06:00

It's also International Human Rights Day.

Wednesday is, you may remember, the day on which, most weeks, Ray Sandford of Columbia Heights, Minnesota, is woken up early and taken to a nearby hospital for forced electroshock treatments. Here are some things to know about Ray, from an extensive FAQ provided at MindFreedom International:

Ray is a 54-year-old Minnesota resident who has regularly been receiving "Involuntary Outpatient Electroshock."

Like all other USA states, Minnesota has loopholes allowing citizens to receive electroshock over their expressed wishes.

Ray says the weekly forced electroshock is "scary as hell." He absolutely opposes having the procedure. He says it's causing poor memory for names such as of friends and his favorite niece.

"What am I supposed to do, run away?" Ray asks.

Ray has been in and out of the mental health system for more than 30 years, with a diagnosis of "bipolar." According to his mother, the mental health system mainly tried psychiatric drugs on Ray, and when those didn't worked they turned to electroshock. Apparently, other alternatives have not been offered to Ray and his family beyond psychiatric drugs and shock.

He is not being forcibly shocked for any criminal justice reasons. According to more than one authority, Ray has no serious criminal convictions, at least for the past number of years.

The bottom line is, there is no good reason to forcibly electroshock anyone, it is inherently intrusive, traumatic and brain damaging. Despite his experiences, Ray remains crystal clear that he does not want his forced electroshock, and he wants to tell the world. Especially, forcibly shocking someone out in the community makes everyone even in their own homes unsafe.

After months of forced electroshock, Ray got desperate. Ray phoned his local public library's reference desk and asked about human rights groups. The reference librarian referred him to MindFreedom International.

Taxpayers are paying for Ray's electroshocks, including the more than a dozen personnel -- such as conservator, guardian, judge, psychiatrist, court-appointed attorney, anethesiologist, attendants and more -- who surround Ray. Other proven alternatives beyond psychiatric drugs and electroshock tend not to get as much funding.

The national media speculates that Governor Pawlenty may have higher political aspirations. He has campaigned for a "get government off our backs" philosophy. He has been Governor since 2002.

What can you do to help?

It is time to take the Ray Campaign up a notch, peacefully but strongly!
Let this become a top issue in the Governor's office.

Telephone Governor Pawlenty's office *NOW*:
Call any day, but especially call *before* Ray's scheduled electroshock next Wednesday, 10 December 2008.
Call from anywhere in the world phone (651) 296-3391.
From inside Minnesota phone toll free (800) 657-3717.
You have the best chance of reaching staff from 8:00 am to 4:30 pm Central Time weekdays.

Read more about Ray at MindFreedom International and read the only local (or national, really) news coverage on Ray here.

New books on theology and disability

2008-12-07T00:14:00.002-06:00

I haven't read a book on disability and religion since The Disabled God: Toward a Liberatory Theology of Disability by Nancy Eiesland came out in the mid-'90s. That's a great book, by the way, but it's exciting to see three brand new books on disability and religion -- and a thoughtful review introducing them over at The Christian Century.

The three books discussed by Brian Volck are:

Theology and Down Syndrome: Reimagining Disability in Late Modernity by Amos Yong,

Spirit and the Politics of Disablement by Sharon V. Betcher, and

Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds.

Volck looks at each book separately but here's an excerpt on his general thoughts on the topic:

These authors present twin challenges to theologically informed, able-bodied Christians. First, they challenge us to move beyond the relatively easy tasks of redesigning church sanctuaries and striving for visible diversity in liturgies and committees, and to begin engaging the far more difficult mystery of desiring and entering into communion with one another. What liturgical and ecclesial practices can we embrace that will make clear our human interdependence in Christ without allowing us to merely collapse into trivializing sentimentalities like, "Everyone is handicapped in their own way"? We may face greater challenges in becoming interdependent with persons who have intellectual disabilities than with those with physical disabilities. The practices and experience of Jean Vanier's L'Arche communities have much to teach us in this regard.

Second, disability raises thorny questions about traditional interpretations of Christian doctrine: Does God will severe disability? Does salvation through faith imply personal intellectual assent? What does it mean to be formed in the image of God? Does disability persist in the resurrection of the body? Once again, severe intellectual disability may present the greatest challenge.

Yong, Betcher and Reynolds do not present systematic theologies of disability. Instead, they offer stepping-off points for theological reflection. More important, they challenge readers to interrogate their own lives and assumptions, moving discussions past the self-satisfying mantras of inclusion and diversity and into new, potentially frightening and grace-filled territory.

While you're over there, check out an article on musician Curtis Mayfield, the legendary Chicago bluesman who was paralyzed in an accident while on stage in 1990 and died in 1999.

Friday Music: Neil Young

2008-12-05T01:36:00.004-06:00

Image description: From 2007, a color photo of Neil Young from the waist up. He's giving the peace sign while standing at a microphone dressed all in black save for a silver bolo tie.

The casually listener and fan may not be aware that Neil Young is yet another famous musician with disabilities. In 1951 at the age of six, Young contracted polio. Since childhood he's also reportedly had diabetes and epilepsy. In 2005 he had successful surgery for a brain aneurysm. He also has two sons with cerebral palsy and in 1986 he and his wife started the Bridge School in San Francisco, a learning center for disabled children. A 1989 alternative rock compilation album raised money for the school.

So, those are Young's numerous "credentials." Here are some fun details:

His song, "Helpless," is about his experience with childhood polio. Here's a link to a YouTube video of an old stage performance (my guess is early '70s), and here are the lyrics:

There is a town in north Ontario,
With dream comfort memory to spare,
And in my mind I still need a place to go,
All my changes were there.

Blue, blue windows behind the stars,
Yellow moon on the rise,
Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us.

Helpless, helpless, helpless.
Baby can you hear me now?
The chains are locked and tied across the door,
Baby, sing with me somehow.

Blue, blue windows behind the stars,
Yellow moon on the rise,
Big birds flying across the sky,
Throwing shadows on our eyes.
Leave us.

Helpless, helpless, helpless.

From the 2002 Salon review of Shakey: Neil Young's Biography:

Everyone who's heard Young's "Helpless" (which means everyone who's been in earshot of a radio or stereo in the last few decades) knows that he comes from "a town in north Ontario." It was in that town -- Omemee -- that Young, now 56, contracted polio when the virus swept through Canada in 1951. It transformed the pudgy 6-year-old and nearly killed him. "Neil got polio and lost all his girlish curves," Rassy, Young's indomitable mother and a central character in "Shakey," tells McDonough. "Damn near died. Gawd that was awful ... Christ, he looked like hell on the highway. Skin and bones. He never got fat again ... We didn't know if he'd ever walk." When he came home from the hospital "fresh from a disinfectant bath, his black hair in spikes," Young asked the adults, "I didn't die, did I?"
I remember when polio was the terror that stalked the nation, when approaching standing water, say, would earn the harshest of parental rebukes. One of my oldest friends got it in '53 and has been crutching it for half a century; another acquaintance of mine spent most of his 49 years in an iron lung thanks to polio. What an experience like that may do to you -- assuming it doesn't kill you -- is radically alter your perspective and imbue you with a certain bravado and fearlessness, not to mention a sometimes trenchant honesty. Once you've been to hell and back, the things the rest of us find anxiety-inducing -- the scary odds against making it as an artist, for example -- aren't all that scary. Pam Smith, a girlfriend of Young's when he was a teenager, recalls, "Neil was insecure as a person -- I think that's why playing music was so good for him. He had all the confidence in the world in that role."
McDonough's exploration of Young's often tenuous physical state -- he's also epileptic and used to have seizures on stage early in his career -- is one of the more intriguing threads in the book and a key, perhaps, to the singer's sometimes irrational confidence and indefatigable persistence even when those all around him -- Stephen Stills among them -- voiced nothing but discouragement about his abilities.

Musical abilities, that is. Young doesn't have a pretty voice, but everyone knows at least one or two (or dozens) of his songs. Here's a live performance of "Ohio" recorded at Massey Hall (a Toronto theatre) and "Heart of Gold," both stage performances from 1971.

From Neil Young Quotes:

Polio fucked up my body a little bit. The left-hand side got a little screwed. Feels different from the right. If I close my eyes, my left side, I really don’t know where it is - but over the years I’ve discovered that almost one hundred percent for sure it’s gonna be very close to my right side… probably to the left.

- Neil Young interviewed by Dave Zimmer, BAM, 22nd April 1988

My favorite fun fact about Young: In the late 1990's Young bought the Lionel Toy Train company to delight his son Ben. According to Rolling Stone magazine, much of Young's 1980s musical output reflected his frustration at difficulties communicating with his son Ben who, along with an older brother, has cerebral palsy.

Wiki on the song "Helpless"

An extensive Rolling Stone magazine biography

Neil Young News -- a blog on everything you could possibly want to know about the artist

YouTube video of an October 2007 interview on BBC 2. It features commentary by a guy who was "converted" to the beauty of Young's music at a concert. He discusses Chromes Dreams II and the evolution of Young's work with the artist. If anyone locates the transcript for this, please link to it in comments.

Famous people with polio

Call for submissions on feminism, disability & activism

2008-12-04T22:50:00.002-06:00

From the f word:

The Feminist Activist Forum is calling for submissions for a zine on feminism, disability and activism:

Disability has been treated as an unglamorous side-issue within feminist activism.
We are looking for writing and artwork that addresses attitudes to disability within the UK feminist movement.

Have you experienced exclusion from feminist groups and events because you have a disability?
Are there any areas of feminist rhetoric that you find dis-ableist and alienating?
Do you have ideas about how feminist groups and events can be made more accessible and inclusive?
Can you tell us about positive experiences of access and inclusion?

Anything else on the subject also welcome!

We are interested in personal accounts, poetry, art, research and practical tips.

Please email drafts, abstracts, ideas, or questions to disability@feministactivistforum.org.uk

Deadline for drafts: 30th January 2009

When the wheels make the man, part 4

2008-12-04T22:25:00.004-06:00

Out of Spokane, Washington, news of a man who uses a wheelchair falsely reporting being assaulted. The Washington state TV station KXLY offered this headline on Tuesday:

Police: Man made up wheelchair assault story

No, a wheelchair was not assaulted or even alleged to have been assaulted. The man who made up the assault uses one to get around.

Further coverage has been somewhat better. The Seattle Times reports that depression over the holiday season led Kenneth Koch to stab himself, then lie to a friend who took him to the hospital for treatment of the wounds. From there, police were called and the lie snowballed into media coverage and people offering the man money.

Because you are nothing without your assistive equipment. See parts 1, 2 and 3 of this series.

Things that crack me up #49

2008-12-03T07:06:00.001-06:00

Wheelchair Guy becomes an astronaut. The photo from failblog.com shows a parking space with Wheelchair Guy, the international symbol of accessibility, painted in the space. Except the wheel part of the symbol is not under the guy, it's over his head like a big bubble. I suppose the two-piece template for painting the symbol got botched up. Either that or visiting aliens will now be competing for prime parking spots.

Korean girl still to be cared for by family of rapists

2008-12-01T22:41:00.004-06:00

Here's the story in its entirety from The Korea Times, the only English-language, non-blogger source I could find for it:

Court Ruling on Rapists Draws Anger

By Kim Rahn
Staff Reporter

A court handed down suspended jail terms to four family members who repeatedly raped a teenage relative who suffered from an intellectual disability.

The Cheongju District Court Thursday sentenced an 87-year-old grandfather and two uncles of a 16-year-old girl to four-year suspended prison terms for sexually assaulting and raping the girl for the last seven years. Another uncle received a three-year suspended jail term.

The court acknowledged that their crime was ``sinful'' as they used the young girl, who is their family member, to satisfy their sexual desires. But it gave the suspended terms, saying, ``The accused have fostered the girl in her parents' place. Considering her disability, she will also need their care and help in living in the future.''

The court added it took the accused people's old age and illness into consideration.

Citizens strongly denounced the ruling, saying the punishments were too lenient for the grave crime. Internet users said it is absurd to release them to ``take care of her,'' as she needs help from others, not from rapists. They also said those committing such a crime do not deserve consideration regarding old age or illnesses.

Some bloggers are collecting signatures to oust the judge who made the ruling. The prosecution also decided to appeal. ``One of them even has a previous conviction for rape but was given a suspended term. The ruling is unacceptable,'' a prosecutor said.

English-language bloggers in South Korea have been passing this story around for a week now, mostly discussing their outrage at how bad the Korean justice system is at punishing sexual assault. This is juxtaposed against another news story of Korean prosecutors demanding a famous actress be jailed for 18 months for adultery, though bloggers are focusing little on the disability aspect and more on the sexual politics of the Korean judicial system and Korean culture. Disability, in the English-language analyses of this news, is mostly invisible. It's not clear to me how it rates in importance among Korean citizens.

h/t Feministing

When the wheels make the man, part 3

2008-11-30T19:47:00.002-06:00

From the Sunday Mail in the UK, we get this headline:

Wheelchair pervert David Bennie jailed for decade of child abuse

No, the man was not being perverted with a wheelchair. He just sits in one, though the brief news story does end with the suggestion that he's faking his disability:

A WHEELCHAIR-BOUND paedophile has been jailed for four years for a decade of sex attacks.

David Bennie, 47, won three children's trust before subjecting them to depraved attacks.

The widower would strip during "naked nights" at his home and urged the youngsters to do the same.

He abused two sisters from when they were 12 until they turned 16.

Bennie also tried to force a 16-year-old boy to have sex with another man.

He showed hardcore porn to the children at his home in Irvine between 1996 and 2007.

The ex-railwayman was jailed at Kilmarnock Sheriff Court last week after being earlier convicted of lewd and libidinous behaviour and sexual assault. He was put on the sex offenders register indefinitely.

Bennie was wheeled into court by relatives but one victim claimed it was a sham and that he chased her upstairs and into the garden, stopping when he feared being seen on his feet.

Of course, use of a wheelchair never precludes the total ability to walk -- many, many people use wheelchairs because they help with various details of mobility, not because they are incapable of walking at all.

Because you are nothing without your assistive equipment. See parts 1 and 2 of this series.

Lame Duck

2008-11-29T04:42:00.003-06:00

Image description: A color cartoon drawing of a white duck with George Bush's head and one hand, but a duck bill for a mouth. He's holding the red hotline phone and there's a cast on one duck foot. The cast has the seal of the president on it.

Like most people I know, it's been a refreshing change these past couple weeks to see how mostly toothless Bush appears after so many years of his callous destructiveness. But I tire of hearing the term "lame duck." It is ableist, of course, yet so ubiquitous most people don't think about it.

A "lame duck" is, literally, one that cannot keep up with the flock, and the primary definition provided by Merriam-Webster is "one that is weak or that falls behind in ability or achievement."

According to The Phrase Finder, the earliest recorded use of the term as a metaphor dates to 1761 and investors in the London Stock Exchange who couldn't pay their debts. Along with "bull market" and "bear market," "lame duck" was part of 18th-century stock trading lingo. How that came to be may or may not have something to do with the British game cricket:

In Horace Walpole's Letters to Sir Horace Mann, 1761, we have:

"Do you know what a Bull, and a Bear, and a Lame Duck are?"

In 1771, David Garrick, in Prologue to Foote's Maid of Bath wrote:

"Change-Alley bankrupts waddle out lame ducks!"

In 1772, the Edinburgh Advertiser included:

"Yesterday being the settling day for India stock, the bulls had a balance to pay to the bears to the amount of 23 per cent. Only one lame duck waddled out of the alley, and that for no greater a sum than 20,000."

We are still familiar with the terms 'bull market' and 'bear market', referring to rising and falling markets respectively, but 'lame duck' in the specifically stock trading context is now little used.

Why should someone who has no assets be called a 'duck'? Could it be related to the cricketing term, 'out for a duck' - used when a batman is out without scoring any runs? It seems not. That term is much later and refers to the zero on the scoreboard being similar to a duck's egg. First used in 1867, in G. H. Selkirk's Guide to Cricket Grounds:

"If he makes one run he has 'broken his duck's egg'."

The term made its way to American politics, with the first reference here in 1863 and the first presidential reference about Calvin Coolidge in 1926. Back then, out-going politicians had about 60 days longer to wreak havoc before newly elected representatives took office. The 20th Amendment to the U.S. Constitution, also sometimes referred to as the Lame Duck Amendment, shortened that time to it's current length, with new Congressional members taking office on January 3 and the president on January 20 following November elections.

"Lame duck" is particularly ableist since its current use refers not only to the decreased political power of elected officials who are slated to be replaced but also to the lack of accountability those politicians face. The daily "Quackitude" report on The Rachel Maddow Show on MSNBC, for example, covers both instances where Bush seems to be conceding his position to Obama already and the executive orders that reveal a gross misuse of power by bypassing legislative approval of things like uranium mining along the Colorado River.

I love Maddow and her show, but here's the relevant part of the November 7 show transcript that puts it all together under "Lame Duck Watch":
MADDOW:

We elected a new president this week, but there are still 10 scary weeks left of the Bush administration when anything can happen and most likely will.
And so we are back with another installment of our public service series, the RACHEL MADDOW SHOW "Lame Duck Watch" because somebody has to do it.

On the agenda at 1600 Pennsylvania Avenue, in the last couple days, nearly nobody watched. Scrapping Mid-East peace. Now, there's an idea. About a year ago, the Bush administration invited officials for nearly 50 countries to Annapolis, Maryland for a meeting with Israelis and Palestinians to try to forge peace before the end of the Bush era.

It widely considered the president's attempt to save a sliver of his otherwise, rather soily international legacy. At the time, those talks were deemed a success by Secretary of State Condoleezza Rice. And the administration vowed to keep working on this until Bush left office. They said they would get a deal before the end of the year.

Well, yesterday, the administration announced, forget it. They called off plans for any further talks before the end of the year. Legacy shmegacy. We've got an environment to wreck while we still have a chance.

They didn't say that thing about the environment, but yes. President Bush's Interior Department is busy relaxing environmental protection rules on mining for uranium within three miles of the Grand Canyon, you know, where the Colorado River runs, the one that provides drinking water for Phoenix, Vegas and L.A.

"Mommy, I didn't ask for lemonade. It's not lemonade, Sweetie. It's the seepage off those radioactive tailings. How much better would it be if January 20th were like tomorrow?

Daily, Maddow links impotent power with irresponsible use of what power Bush has left. So does everyone else. So being a "lame duck" is not just about being ineffective (which is ableist enough by itself), it's also about being an asshole.

Friday Music Mix Tape

2008-11-28T01:43:00.004-06:00

I'm trying something new, thanks to Grace. I did it for me, but then I thought I'd share it.

The above image of a cassette tape (with a vintage black-and-white photo on it from Warm Springs Institute of five women with polio using wheelchairs, each with one arm vigorously upraised in a wave to the camera) is a clickable link to a ten-song audio mix tape of former Friday Music artists. It's not all the same songs as featured before, and the clickable image isn't accessible for vision impairments. Below are alternative links to YouTube -- also not particularly accessible for various impairments, but the songs start there when the page loads so it's an alternative way to get the audio or see the artist.

Here's the playlist:

The Dresden Dolls - Girl Anachronism
Ben Harper with the Blind Boys Of Alabama - Take My Hand
Nina Simone - My Baby Just Cares For Me
Sinéad O'Connor - If You Had A Vineyard
Neil Young - See The Sky About To Rain
Robert Wyatt - Shipbuilding
Kristen Hersh - Your Ghost
Warren Zevon - For My Next Trick I'll Need a Volunteer
Joni Mitchell - A Case of You
Chavela Vargas - Paloma Negra

Ahem: I haven't posted on Neil Young yet. I shuffled posts around to accommodate the Thanksgiving weekend holiday and my reluctance to spend it typing much, but Young will be the very next Friday Music post.

Autism in Minnesota Somali community

2008-11-27T00:03:00.000-06:00

I'm spending the day with family, but here's something interesting, controversial and meaty to read "On Autism, Somalis Feels the Chill in Minnesota," from Age of Autism. It's controversial for a number of reasons, including that the site is sponsored by a pharmaceutical company and because there is much discussion of vaccines and their relation to autism. Read it for info on one of the largest Somali communities in the U.S.

And then go read up at Autism Vox about the "cluster" of autism reported above. Or read more in depth there about vaccines and how there is no evidence that they cause autism.

7 Wheelchairs reviewed by NYT

2008-11-26T23:37:00.004-06:00

Image description: Color photo of Gary Presley's book cover for "7 Wheelchairs: A Life Beyond Polio." A close-up photo of one back wheel of a manual wheelchair.

Gary Presley's new book, 7 Wheelchairs: A Life Beyond Polio, receives a rave review from the New York Times:

Those who prefer their miracles in subtler and more secular form might turn instead to Gary Presley’s extraordinary memoir of a life after polio. No one rises from a wheelchair and walks again in this book, yet the miracles clearly abound.
Mr. Presley was part of the last generation of polio patients in the United States: he became sick in 1959, right after receiving a booster shot of the old Salk vaccine. Whether the illness was from the vaccine or despite it was never clear, and in the end made little difference: within a week both legs were paralyzed, both arms drastically weakened, and he could not breathe.
The primitive respirators of the time saved his life. For months, an iron lung encased him like an oversize Tin Woodsman’s costume, doing the work his own muscles could not do. He was flat on his back, his world limited to what he could see in a small mirror affixed to the top of the machine. (With the mirror tilted correctly, he could watch “noitartnecnoC” and “drowssaP” on television.)
Eventually he graduated to a smaller, more portable lung — a metal carapace that let him sit upright. At night a rocking bed turned him violently on his head and back again to force air in and out of his lungs. Then the hospital sent him home to a small isolated Missouri dairy farm. He was 18 years old.
Mr. Presley writes with candor and precision about every facet of the next five decades. He learned to breathe without machinery, but he never walked again. A voracious reader, he skipped college and settled into a clerical job in a local insurance office. His wheelchairs became faster and sleeker, but his parents helped him dress and bathe until they died. As for toileting: Mr. Presley’s chapter devoted to the mechanics of urination and defecation in the face of paralysis is a tour de force that should be required reading for all.
Who could predict that, finally living on his own in his late 40s, he would fall in love with one of his hired aides? Or that, now approaching 70, his anger and depression faced and pretty much conquered, he would be happily married, healthy, vigorous, productive, in his words, a lucky man? A miracle, indeed.

Congrats, Gary!

Things that crack me up #48

2008-11-25T23:09:00.000-06:00

Image description: A color photo posted to Flickr by Trevor Coultart shows a white rectangular sign with the black image of Wheelchair guy inside a red circle. To the right, the direction Wheelchair Guy faces, is one word: "HIDE!" also in red.

There are a few pellet gun holes in the sign all around the Dude, who is either fleeing or chasing, I can't tell which.

New book on Buck v. Bell

2008-11-24T22:52:00.003-06:00

Image description: The cover of Lombardo's book shows sepia-toned photographs of two women and an infant. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell by Paul Lombardo

A new book by legal historian Paul Lombardo explores, in depth, the 1927 U.S. Supreme Court case Buck v. Bell in which Justice Oliver Wendell Holmes famously declared "three generations of imbeciles is enough." This was the case that legalized involuntary sterilization of the "feeble-minded" and gave great credibility to the American eugenics movement.

Lombardo details not only the needless cruelty of Holmes' statement, but also it's utter inaccuracy. As described by USA Today science columnist Dan Vergano:

The three generations in the case, Carrie Buck, her mother, Emma, and daughter, Vivian, it turns out weren't imbeciles; Carrie was an average student and Vivian, taken from her mother and placed in the home of the family whose nephew had fathered her, made the honor role once in her short life.
"Buck earns a place in the legal hall of shame not only because Holmes' opinion was unnecessarily callous but also because it was based on deceit and betrayal," writes legal historian Paul Lombardo of Georgia State University in Atlanta, in his just-released book, Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Scientists and lawyers, including Carrie Buck's defense attorney, conspired against her, Lombardo finds in old records.

The inaccuracy wasn't an accident. Carrie Buck was used and betrayed at every turn:

In reality, Buck was at the [Virginia Colony for Epileptics and Feeble-minded] because she had been raped and impregnated by the nephew of her foster family the year before. The family sent her to the colony, where her mother resided, to escape scandal. [Physician superintendent of the colony, Albert] Priddy "quickly began collecting information to demonstrate the hereditary defects he was certain linked Emma and Carrie," writes Lombardo.

The Buck decision was popular in its time and as a public policy even encouraged the eugenic Nazi philosophies of racial health and purity. From Vergano again:

It wasn't until national publicity about sterilization abuse in the 1970s that the practice ended. In 1942, the Supreme Court struck down involuntary sterilization of inmates, but the Buck decision has never been repealed.
"Eugenics still fascinates today," says Lombardo, invoked in debates over genetics testing, abortion and the future of medicine. "The attitudes are still around that fostered eugenics. They aren't going away."

Things that crack me up #47

2008-11-23T00:08:00.003-06:00

Image description: A color photo of a modern, high-backed wheelchair all in a shade of light gray similar to office computers. The seat pictured is one option -- with a cut-out in the middle to acommodate the toilet underneath. The whole seat, with high back, headrest, and slim minimal armrests, looks a lot like modern office furniture with foot platforms attached and a different wheel base.

So, there are some cool things about this "high-tech wheelchair" called the Home Chare. It's a design project, I believe, not something actually being manufactured anywhere yet. The concept is basically a chair for everything but sleeping -- it can lie flat so as to be a level transfer height from a bed, it can detach from it's wheeled base and attach to a stairway lift, and you can poop in it by simply wheeling the chair over what looks like a standard size toilet.

Though for that last to work, as noted at Student Tech News, the wheelchair user needs to be pantless. That's the part that has me giggling:

"I have a modern new wheelchair! But there's one catch: I will no longer be wearing pants of any kind!"

In all serious, there's some design genius and also some serious flaws here, unless this is still meant to be an auxiliary chair to a person's main power wheelchair as even the large back wheels of a manual chair have to be attached for this to be maneuverable from a sitting position. Like the wheel base that accommodates a toilet beneath it, large wheels that a user can touch and turn while in the chair seem to be an accessory rather than a built-in feature, and since there's no motor or power mechanism of any kind, this is a chair to be pushed around in rather than to use for oneself. It's for ease of care-giving, not the ease of a wheelchair user. And that's fine if this is an auxiliary chair to the one the person can use independently.

Other possible flaws that I see include the tiny armrests, which I would try to lean on or use to shift my weight and find myself on the floor because they are not big enough to keep anyone who needs support from flopping out. Also, while this would make an awesome shower chair -- or poop chair, I guess -- I do not want to spend all the hours of my day in a chair lacking cushiness. Disabled people's asses, what I know of them, are rarely impressed by very modern, thin seating, even if it does include gel cushion. Padding everywhere, please, if I'm sitting here all week.

Finally, I kind of like wearing pants.

Slumgullion #49

2008-11-22T01:43:00.001-06:00

The U.S. Supreme Court declines to hear an appeal by Californian Jarek Molski on whether he is a "vexatious litigant" no longer allowed to sue businesses over disability access without first seeking court permission. I've written about Molski in the past, here and here.

Popular Mechanics magazine includes a wheelchair design in its Top 10 Innovations of 2008. The winners, California Institute of Technology engineering students, have started the non-profit Intelligent Mobility International and are currently trying to lower the cost of their wheelchairs from $150 down to $40. (For the unaware, a folding lightweight manual wheelchair bought by any major vendor in the U.S. can easily cost a couple of thousand dollars.)

Rebalancing the scales of justice -- Columnists at the Guardian details how the U.S. Supreme Court has dismantled consumer protections against health insurers and what Obama must do to halt and reverse the damaging effects. Here's the up-shot, but see the column for details of what the Scalia Court has done to consumer health rights:

As the new president rolls out new proposals for ensuring health and economic security, he should not ignore the court's drive to roll back existing safeguards. If he acts fast, he could score some significant early wins, and send a clear signal that the new sheriff in town is serious about justice for ordinary citizens. Early in this Congressional term, it could be possible to legislatively "fix" decisions that distort major laws like Erisa (the Employee Retirement Income Security Act) and the Civil Rights Act equal pay guarantees upended in the Ledbetter case. His agency heads can rescind the mass of Bush administration regulations and policies that pre-empt vital state legal protections. His justice department can press the federal courts to faithfully construe laws in line with their original reformist purposes, and stop importing stealth deregulatory designs recently in vogue. Most important for the long-term, the president, together with allies in the Senate, can sensitise new judicial nominees to the priority of robust enforcement of guarantees protecting Americans' pocket book needs.

The Court of Appeals for the Tenth Circuit recently ruled that driving is not a "major life activity" under the ADA. Kellogg v. Energy Safety Services Inc. originates in rural Wyoming, where as stated at Workforce Management, "public transportation is virtually nonexistent and distances between towns are measured by hours rather than miles." The same conclusion about driving was reached back in 1998 and 2001 by the 2nd and 11th Circuit Courts, respectively, but passage of the recent ADA Amendments Act means that the logic behind this ruling should no longer apply to similar cases in the future.

Disabled rabbit gets a wheelchair -- The article says the American company that makes pet wheelchairs sells some for disabled pet skunks too. This will be something I ponder now and then for a while.

Woman in wheelchair sued after being hit by truck -- Apparently her being hit (while attempting to cross at an intersection that didn't have a crosswalk) caused a couple thousand in damage to the truck. The comments to this article aren't for the faint of heart: The prevailing sentiment seems to be that a woman in a wheelchair has no business in the street.

British film censors label new film with the warning that it contains "disability themes" -- Imagine any other group of citizens being considered troublesome enough to warrant a warning label: "Women doing girly things" or "Beware: Black folks!"

British teen wins right to refuse heart transplant -- One of a number of news stories out of the UK recently that focuses on assisted suicide and the "right" of people to die.

"Noel, is life really not worth living?" -- Ouch podcast host Liz Carr addresses Noel Martin, a man paralyzed in a 1996 attack by Neo-Nazis, who plans to travel to Switzerland to commit suicide. Carr says:

I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all the others who have the power to decide if we live or die.
I'm sure by now you know how I feel about assisted suicide. Until the day when good quality health and social care are universally available regardless of age, impairment, race, gender or location, I believe there is no place for legalised assisted suicide.
I just think it's too easy for a society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives. Forget the right to die, isn't it more urgent that we campaign for the right not to be killed?

See also Bad Cripple and Secondhand Smoke for more on Noel Martin.

Then read a contrasting story, also out of the UK -- Sue Garner-Jones, a British teacher who has been paralyzed since an automobile accident 34 years ago, responds to the much publicized Swiss suicide of a former rugby player called Daniel James. By Swiss suicide, I refer to Switzerland's practice of legalized assisted suicide that an estimated 900 Britons avail themselves of each year. Garner says:

People make their own decisions about how to live their life. But there’s a lot of talk about bravery and courage for people who were opting out of living their lives. I didn’t like the inverse of that.
To call this action ‘brave’, ‘courageous’ and ‘selfless’ implies that those of us who battle on are ‘cowardly’ and ‘selfish’, which is unfair and untrue.

Here's the skinny on Daniel James. All this has been huge news across the pond. We've been a little self-involved with our elections, I suppose.

Friday Music: Warren Zevon

2008-11-21T01:53:00.001-06:00

Warren Zevon would be an appropriate music post on The Gimp Parade because he was a well-known musician with obsessive-compulsive disorder, or because he was dogged by alcoholism for much of his adult life, or because he died in 2003 of mesothelioma (a cancer associated with asbestos exposure) after documenting his decline in health with a final album and a VH-1 documentary. But really, I just love his music.

This YouTube video of a 1978 live studio performance of "Werewolves of London" is intercut with brief shots of a werewolf man dressed in a tux and cape. Zevon plays a grand piano and sings while a four-man backup band stands in the background.

The lyrics:

I saw a werewolf with a Chinese menu in his hand
walkin' through the streets of Soho in the rain.
He was lookin' for the place called Lee Ho Fooks,
gonna get a big dish of beef chow mein.

Chorus:
Aaahoo, werewolves of London
Aaahoo(2x)

Ya hear him howlin' around your kitchen door,
ya better not let him in.
Little old lady got mutilated late last night,
werewolves of London again.

Chorus 2x

He's the hairy, hairy gent, who ran amok in Kent.
Lately he's been overheard in Mayfair.
You better stay away from him, he'll rip your lungs out Jim.
Huh, I'd like to meet his tailor.

Chorus 2x

Well, I saw Lon Chaney walkin' with the queen, doing the werewolves of London.
I saw Lon Chaney Jr. walkin' with the queen, doin' the werewolves of London
I saw a werewolf drinkin' a pina colada at Trader Vic's
And his hair was perfect.

ahhhooooo, werewolves of London
Draw blood

Zevon's wiki reads like a Who's Who of famous musicians, actors, and authors. His career sort of died several times, and he made come-back albums several times as he worked through addictions and other personal struggles. When he learned he had cancer, he began one final album and spent his last year recording it with good friends in a kind of long, public goodbye. He appeared as the only guest on The David Letterman Show about 11 months before his 2003 death, candidly discussing his short future and singing some of his best known songs.

YouTube video of Zevon on stage playing guitar and singing "My Shit's Fucked Up." Here are the lyrics, which he wrote several years before his cancer diagnosis:

Well, I went to the doctor
I said, "I'm feeling kind of rough"
"Let me break it to you, son
"Your shit's fucked up."
I said, "my shit's fucked up?
"Well, I don't see how--"
He said, "The shit that used to work--
"It won't work now."

I had a dream
Ah, shucks, oh, well
Now it's all fucked up
It's shot to hell

Yeah, yeah, my shit's fucked up
It has to happen to the best of us
The rich folks suffer like the rest of us
It'll happen to you

That amazing grace
Sort of passed you by
You wake up every day
Hang your head and cry
Yeah, you want to die
But you just can't quit
Let me break it on down:
It's some fucked up shit

YouTube video of Zevon on a stage alone with a guitar singing "Lawyers, Guns and Money" from a 1994 BBC Christmas program titled Words and Music: American Writers.

YouTube video, in four parts, of the one-hour David Letterman episode with Zevon as his sole guest, just short of a year before his death. Parts one, two, three, and four. Sorry, I don't have a transcript, and I don't have the typing ability to whip up this length of dialogue here. I can offer the brief description from Wikipedia:

On October 30, 2002, Zevon was featured on the Late Show with David Letterman as the only guest for the entire hour. The band played "I'll Sleep When I'm Dead" as his introduction. Zevon performed several songs and spoke at length about his illness. Zevon was a frequent guest and occasional substitute bandleader on Letterman's television shows since Late Night first aired in 1982. He noted, "I may have made a tactical error in not going to a physician for 20 years." It was during this broadcast that Zevon first offered his oft-quoted insight on facing death: "Enjoy every sandwich." He also took time to thank Letterman for his years of support, calling him "the best friend my music's ever had". For his final song of the evening, and his final public performance, Zevon performed "Roland the Headless Thompson Gunner" at Letterman's request. In the green room after the show, Zevon presented Letterman with the guitar that he always used on the show, with a single request: "Here, I want you to have this, take good care of it."

Other sources:

Review in the NYT of I'll Sleep When I'm Dead, the posthumous biography published by Zevon's ex-wife.

A interesting list of famous people with OCD

Action Alert -- Update on Ray Sandford's forced electroshock "therapy"

2008-11-20T22:32:00.007-06:00

Image description: A color photo taken by a concerned citizen who visited Ray Sandford after hearing about his forced electroshock treatments. Ray is a 54-year-old white guy with wire-rimmed glasses and a neatly-trimmed, graying beard. He's wearing a blue knit earwarmer headband.

According to MindFreedom International, the source of my post last week on involuntary outpatient electroshock in Minnesota, Ray Sandford's doctor has decided to "skip" a week of the torture. Here's the full update, posted as offered at MindFreedom International:

Ray Alert #3 - 16 November 2008

First the good news.

Within days of MindFreedom launching its Ray Campaign on 7 November 2008 to stop the weekly involuntary outpatient electroshock of Ray Sandford, his doctor has decided to "skip a Wednesday."

Ray says that this coming Wednesday, 19 November 2008, for the first time in months, Ray will not be escorted against his will, under court order, from his Minnesota home out in the community to his 34th involuntary outpatient electroshock.

So there's a reprieve for Ray.

For one week.

The bad news is that Ray's doctor said Ray's forced outpatient electroshocks will resume on Wednesday, 26 November 2008, the day before the USA holiday of Thanksgiving.

Ray said his involuntary shock will then continue every other week.

We don't know if the one-week reprieve is because of the MindFreedom campaign, but we know MindFreedom News readers are having an impact.

Since the MindFreedom first alert went out nine days ago, on 7 November 2008:

Many people from all over the world have e-mailed and phoned the offices of the Governor of Minnesota, along with social service agencies, media, and the hospital where Ray receives his electroshock against his expressed wishes.
For the first time, thousands of people are now aware of the existence of IOE -- Involuntary Outpatient Electroshock.
A few national and local media are now actively investigating.
Several advocacy agencies and human rights organizations are expressing concern and getting involved.
Several volunteer attorneys are now in touch to provide assistance.
Volunteers are visiting Ray and sending him their support, and Ray tells us he is grateful. One volunteer took the photo of Ray shown here.
MindFreedom's "Zapback" e-mail list is coordinating the campaign.
A disability professor and her class of students have called up Ray and are taking on his campaign as a project.
And more.

Thank you, everyone.

Keep up the pressure and the support!

First, keep phoning and e-mailing, especially if you have not so far. Show there is national and international concern!

Here are the links to the original two MindFreedom alerts, which have information about how to e-mail and phone the Governor of Minnesota, and how to write or visit Ray:

7 Nov: Alert #1
http://www.mindfreedom.org/shield/ray-sandford

12 Nov: Alert #2 - Governor Phone-In Campaign
http://www.mindfreedom.org/shield/pawlenty-electroshock

Second, help MindFreedom answer the main mystery.

Despite all this public interest the question remains, "What is Governor Pawlenty's position on Minnesota laws allowing involuntary outpatient electroshock?

Is this Governor, who campaigns for "limited government," for such laws or against them?

Unfortunately, the Governor's office has not responded to any of the many e-mails or phone calls requesting his policy position. The Governor's office is immediately forwarding citizen inquiries to a voice mail, and then not replying to the voice mail.

We need media to ask the Governor for us. Please forward this alert to all media, small and large, from newspapers to bloggers.

Media can direct questions to:

Brian McClung

Director of Communications for Minnesota's Governor

phone: (651) 296-0001.

Media ought to ask, "What is Governor Pawlenty's position on Minnesota laws allowing involuntary outpatient electroshock?"

Sometimes the Governor's office is re-directing calls to the Minnesota Department of Human Rights. At first that sounds good. But this office says it is only focused on determining whether narrow discrimination complaints are legally valid. A spokesperson said this department makes no statements about policy.

This Minnesota agency said they are planning a major one-day human rights conference and forum on 5 December. One barrier is the "forum" costs $200.

For information on this Minn. Dept. of Human Rights, and their "forum," click here:

http://www.mindfreedom.org/shield/ray/minnesota-human-rights-conference

You can also keep up with some of the latest developments about the Ray Campaign on the MindFreedom blog by MindFreedom director David Oaks, here:

http://www.mindfreedom.org/mfi-blog

Disclaimer: Because the State of Minnesota won't reply, portions of these alerts are based on Ray's personal statements. By Ray's own admission, he now has severe memory problems. Therefore, journalists and others may want to find a second source to confirm accuracy.

*****

And a suggestion from me:

After you call or email the State of Minnesota (numbers provided by MFI):

From anywhere in the world phone (651) 296-3391.
From inside Minnesota phone toll free: (800) 657-3717.
You can leave a message at any time. You can reach staff any non-holiday weekday from 8:00 am to 4:30 pm Central Time.
Call any day, but especially call on Wednesdays.

Add Ray Sandford to your holiday card list:

Ray is open to visitors and supportive postal mail:
Ray Sandford
Victory House
4427 Monroe St.
Columbia Heights, MN 55421-2880 USA

Things that crack me up #46

2008-11-19T01:09:00.003-06:00

Is this cute or disturbing?

Image description: A color photo posted to Flickr by geekmama76 of a sign on a restroom at a wildlife park in Perth, Australia. It's a 3-D sign, I believe. It's of a creature, like a groundhog (or a badger?), with a bandage around it's head and it's hind legs and back half resting in a tiny little silver wheelchair.

This is obviously an original piece of signage art. What I find disturbing -- or hilarious? -- is that it looks like a stuffed animal -- an actual animal, dead, but stuffed -- attached to the disabled access restroom door.

Sign language in Sia's videos

2008-11-18T22:36:00.005-06:00

Sia, an Australian pop singer perhaps best known for her song "Breathe Me" which played during the closing sequence of the Six Feet Under TV series finale, has released a music video for her newest single "Soon We'll Be Found" that features American Sign language throughout:

Video description: As the music begins, Sia, a blonde woman, is in what seems to be a warehouse. She walks up to a bowl filled with milky white liquid and dips both hands into it. With a full-body view of her, she begins signing the lyrics (though I don't personally know how accurately). Editing cuts between close-ups of her hands signing and the full-body view. Then the room darkens around her and she stands in a spotlight while the editing back and forth continues. When the chorus is reached, the lights come back on and here are people dressed in black lined up, three to either side of her. They each have had their hands dipped too, but in a variety of colors. They all sign the lyrics together, their hands standing out colorfully against their black clothing. As the next verse begins, the camera shifts to follow Sia's signing in shadow on a wall where her hands are joined by the shadows of many others, some signing and some forming shadow puppets on the wall -- animals, trees, a Garden of Eden with a shadow puppet snake slithering by. A jumble of gracefully waving hands and arms eventually overwhelm the lighted wall and fade it to black. Then Sia dances alone in a blacklight, her white clothing, painted face and green hands showing brilliantly in the black with dozens of bluish hands -- just hands -- around her, as stairs beneath her feet, as a halo around her body. She continues to sign the lyrics while the halo hands flutter and editing cuts between close-up and full body views. Then the hands scatter and while she signs the chorus they appear as bluish streaks signing with her, indistinctly seen in the black. Then her hands and the disembodied ones begin painting in the blackness, a little like a toy LiteBrite -- a sun, trees, clouds, a landscape of colorful flowers. Blue hands perch as birds in the painted trees against the black background. Then suddenly Sia is in the white-walled warehouse again. The six people are gone but black clothing lays in piles where each once stood. Sia looks up and smiles as disembodied blue hands fly like birds into the rafters.

The lyrics to "Soon We'll Be Found":

Come along it is the break of day
Surely now, you'll have some things to say
It's not the time for telling tales on me

So come along, it won't be long
'Til we return happy
Shut your eyes, there are no lies
In this world we call sleep
Let's desert this day of hurt
Tomorrow we'll be free

Let's not fight I'm tired can't we just sleep tonight
Don't turn away it's just there's nothing left here to say
Turn around I know we're lost but soon we'll be found

Well it's been rough but we'll be just fine
Work it out yeah we'll survive
You mustn't let a few bad times dictate

So come along, it won't be long
'Til we return happy
Shut your eyes, there are no lies
In this world we call sleep
Let's desert this day of work
Tomorrow we'll be free

Let's not fight I'm tired can't we just sleep tonight
Don't turn away it's just there's nothing left here to say
Turn around I know we're lost but soon we'll be found

The music video has circulated fairly widely as it was a free download at iTunes a few weeks ago. On the making of the video, Sia says:

I’ve always been obsessed with the beauty of sign language. The movement and expression just appears, to ignorant-hearing-me as a dance… a beautiful, emotive dance. But the real beauty is that, hidden in these perfect shapes, is communication.

I'm always curious how Deaf people feel about their language being used as art by hearing people, particularly in video format where the full view of the person signing seems to me to often be mangled in order to make it artsy but, ironically, useless as communication. I don't know that the ASL is useless in this video, but its use has been discussed at The Deaf Edge where it's raised conflicting emotions and opinions.

Whether it's to her credit or just an interesting obsession, Sia also uses a bit of sign language in an older song, "The Girl You Lost to Cocaine":

Wheelchairs in modern furniture design

2008-11-17T22:09:00.014-06:00

David Pompa, an Austria-based designer, has created a collection of office furniture called Surreal Minimalism that includes eight chairs created by combining a variety of upholstered seats with different metal bases. Some of the metal bases are lifelike shiny metal human legs and feet, and other bases are wheelchair-like.

The first photo here shows a red seat attached to a metal base that is a minimalistic take on what a manual wheelchair looks like, with two big rear wheels and two small front wheels. It's not clear if the wheels are functional, but I don't think the back wheels would turn and while all the wheels are, of course, round, none of the edges anywhere appear to be rounded to accommodate gripping and pushing with hands.

Created as a project for his graduate studies at Kingston University in London, Pompa says, "Interaction is often reduced to a functional basis; this collection is an approach that objects and humans can interact on an emotional level with the aim of stimulating creativity."

The second photo here shows the same red seat with a metal base that looks like two silver human-shaped calves and feet that rest on short metal strips that look a little like truncated skis. From this angle you can better see the bright red seat which looks a little bit like a Lego with a cushy inner seat carved out of it. The armrests are the same solid unyielding plastic-like material as the rest of the seat's shell, and from this angle you can see it would be impossible to reach around these sharp-edged arms to push oneself with the wheelchair-base. By "sharp-edged" I simply mean the edges of the seat are not rounded off anywhere but are perpendicular corners. The top is blocky and the bottom is human-shaped.

At dezeen, Pompa clarifies in comments that the "objects are not meant to be comfortable, aesthetic, or usable furniture. the objects are symbols to question the stereotypical situation many people face in their office enviroment. there is no intention of putting these objects into an office enviroment and i am still at the beginning of their design process."

This third photo is of an entire room with several pieces of furniture that have regular furniture legs combined with either wheels or human-like legs. The furniture is either yellow and white or pink. A long oval yellow conference table has ten different "legs," one pedestal leg, several large round posts of varying styles and several that are either clearly human-shaped or mimic the organic curves of the human-shaped but lack an actual foot at the bottom. The chair at the table is like a basic dining chair with upholstered seat and back, and wooden arms and front legs. The back legs are replaced with yellow-tired wheels complete with handrims. Against a far wall is a chaise-like yellow upholstered sofa where the two back legs are replaced by slightly scaled-down versions of the yellow-tired wheels. A pink easy chair with ottoman looks quite comfortable. The ottoman has a metal pedestal base with four legs to the pedestal. The chair has half of that metal pedestal and is balanced in the back by pink-tired wheels with handrims. Between these last two pieces is a lamp that has small wheels (about the size of the front wheels on a manual) as part of its base. Obviously these chairs would not roll unless you lifted the half without wheels off the floor, but these are clearly images of a basic manual wheelchair worked into otherwise classic-design furniture.

Do you like what you see and how Pompa uses the wheelchair in the same way he uses human form in these designs? I wasn't sure how I felt about them until I read this analysis at notcot:

why do we always think about functions when we talk about inclusive design? design icons are icons for an exclusive range of our society. why?

I'm not sure if that's a writer at notcot or Pompa further explaining his design, but I like that very much. I think that inclusiveness is still not nearly a big enough part of even design discussions about function if the design of everything around us is an indication of what's being talked up, but hey, I'm all for inclusive design icons too.

That third photo above clarifies for me how furniture design could naturally incorporate the iconic wheelchair image so typically used as a symbol of inability and pity into design without it looking medical or unwelcoming. That's far more interesting to me than the first two chairs or the other variations in the collection that can be seen here.

Browsing Pompa's website, I found this last image of the design for what looks like a fashion show or possibly a nightclub. It's a big room with many tables, seating perhaps a couple hundred though there are no people in the photo. There's a bar seen dimly at the very back and a long runway or stage through the center of the room. Above it is some interesting angular architectural design. There are several stairs at each end of the long runway stage, but angling off from the stage's center are wide ramps that slope into the audience at either side. The ramps are a natural part of this whole angular stage and design above it. A half dozen big globe lights hang over the runway as a contrast to all the crisp corners and angles. Everything is white and stylishly accessible.

Still more links

2008-11-16T22:31:00.002-06:00

I mentioned these additions in comments to the last link love post, but these blogs deserve their own announcement too:

Followed Lingling as She Gave Lymphoma a Beatdown
The Sakurako Chronicles
Three Rivers Fog
Whose Planet Is It Anyway?

Disability Blog Carnival #49 at I Hate Stairs

2008-11-16T19:15:00.002-06:00

Check out the latest Disability Blog Carnival over at I Hate Stairs where the theme is "Lists."

And contribute to the upcoming carnival at The Life and Times of Emma where the theme will be "I am." The carnival happens on Thursday, November 27, which is Thanksgiving in the U.S., and the submission deadline is the Monday before -- November 24. Submit a blog post through the carnival website or avoid the CAPTCHA thing there, if you wish, by submitting links via comment at Emma's, emailing Emma at emma @ wheelchairprincess . com (remove spaces) or through carnival organizer Penny at Disability Studies, Temple, U.

When the wheels make the man, part 2

2008-11-15T15:02:00.004-06:00

Each incarnation of an ugly news story out of Darwin, Australia, continues to boggle my mind. A 26-year-old man had sex with his disabled, wheelchair-using mother who, when able to get away, told her doctor about the assault.

The first story I saw on this had the lovely headline "Desperate man had sex with wheelchair-bound mum." Apparently, he was so distraught that the ladies don't fancy him that he became "desperate."

And now there's this headline:

Wheelchair incest man jailed in Darwin

Note for clarity's sake that no one committed incest with a chair. Note also that the man was not a chair-user. It's his mother, the victim of sexual assault, who is reduced to being a modifier for her son's act: "wheelchair incest." And finally, note that the man is serving time for incest (because it's illegal to have sex with a close relative), but not for sexual assault or rape.

Because you are nothing without your assistive equipment. See similar post here.

Okay, more link love for blogroll

2008-11-14T13:31:00.007-06:00

My friend Amanda asked in comments yesterday if I could point out any cancer blogs because my sidebar blogroll is a bit intimidating in length. When I started this blog about four-and-a-half years ago and started building that big blogroll, I tended to not choose blogs that were mostly about posting on what drugs the blogger was taking and how much energy they had that day. I was looking for expressions -- even homey ones -- of disability as a social/political condition.

Specifically, I remember passing by a number of blogs by people with MS where the posts were almost exclusively about medications being taken, dosage, side-effects, effectiveness, etc. I wanted to hear whether or not their apartment was accessible or if coworkers were cutting them some slack when they were weary, if they were passing as nondisabled or revealed their condition at work and to family. If the diagnosis was accepted and believed.

But writing about many of those details presumes that the writer connects their illness or condition to the state of the environment around them and not just to the imperfect state of their body. And that doesn't always happen, or doesn't happen for a long time, for a number of good reasons. Often it's not the most pressing, consuming issue. It can take some time out there on the ground, in the streets, to notice what the social/political dimensions of disability are, especially if you are passing fairly easily. And many people (maybe most) resist joining up as one of "the disabled" because of what it means to their self-perception. There are quadriplegics out there who are okay with talking about social discrimination and the limitations of their physical bodies, yet they deny being "disabled," either semantically or categorically. I don't understand that latter, but I've also never been interested in arguing the point with those folk, so they tend not to make the blogroll either.

So, for those reasons and also my own blogroll-building shortsightedness, my blogroll is pretty lacking in some areas. Cancer blogs is one of those areas, though there is some scant representation:

Two of my favorite bloggers (and favorite online people), Sara of Moving Right Along and Jana of Pilgrim Steps each have amputated limbs because of cancer. You can see how my bias works right there -- they're part of my blogroll and daily reading because I relate to how they write about mobility issues and the social aspects of that. It just happens -- to me, though it's quite central in the story to each of them, I am sure -- that cancer was their path to disability awareness.

Now I think on it, I'd be pressed to name the diagnoses of most people on the blogroll, if it isn't clear in their blog's name. I'm more aware of particular impairment details of who uses a wheelchair or prosthesis, is autistic or blind, is bipolar or otherwise focused on mental health issues. I'm not uncaring, though clueless might be an apt accusation. The philosophy behind my sidebar means it's not particularly useful to anyone looking for a blog about a specific impairment or medical concern.

Another of the many failings of my sidebar is that it was set up to privilege the voices of disabled people writing about disability, and generally places nondisabled bloggers who also write on disability in a separate listing ("gimp parades" and "other parades"). Except for some nondisabled people who focus solely on disability issues and come to the topic as parents or college students. It's a muddy plan that fails to acknowledge Daisy or Feministe, for example. I'm not sure what to do about that because the list is too long to not categorize it in some manner, and since I won't divide people up by diagnoses (that won't happen), commitment to writing to the issue seems best.

Yet another sidebar dilemma, by the way, is my atrociously disappointing index. It's workable in a limited sense, but I hate having terms like "amputee," "blind," "dwarf" there. Is this a necessary evil to make the archives here accessible? Any suggestions on how to create a useful index that feels less like reducing people to diagnoses or labels would be appreciated. If someone has an index you like, leave a link to it, please.

Anyway, back to Amanda's comment. Here's a little link love for four blogs of people who have or have had cancer and are already on my sidebar:

As The Tumor Turns -- No longer being updated because of a successful prognosis.

Moving Right Along -- I can't say Sara writes about cancer, but she writes about her life and the four-year ride since it entered her life. She specifically began her blog because when she faced amputation of her leg, she went looking online for reasons to do the surgery and keep living. (That's the basic exploration of all disability blogs, imo: How do we, individually and as a society, do... all of this?) Also: bundt cake recipes and the occasional Mad Science Sunday.

My Private Casbah -- Bint has written some about cancer, though perhaps significantly, there's no clear path to that topic in her indexing. What she excels at most is intersectionality, ally-work and writing critically about the social justice issues of disability, race, sexual orientation and gender while generously engaging opposing viewpoints in comments.

Pilgrim Steps -- Again, cancer is not the point of the blog but part of the writer's history. Jana also takes incredible flower photos. And recently she's written eloquently about her Mormon heritage and Prop 8. And this is a must-read on how some Mormon elders equate homosexuality with disability because both groups are just too broken to marry and attain full stature in heaven.

And I'm adding these two cancer blogs to my sidebar. Other recommendations welcome:

The Assertive Cancer Patient
Not Just About Cancer

A little bit of link love

2008-11-13T02:10:00.003-06:00

My sidebar needs a lot of updating, but here's a start. Ten new links:

Amber Tracker
Autist's Corner
DeafRead
Inside the Little Plastic Castle
Laura Hershey: Writer, Poet, Activist
Life of John
Media Dis&Dat
PhilosopherCrip
Special Needs Truth '08
Suela

Forced electroshock in Minnesota

2008-11-12T02:54:00.002-06:00

I've copied the following in its entirety from The Trouble with Spikol:

URGENT: Forced Electroshock

MindFreedom International — 7 November 2008
Human Rights Alert: Involuntary Electroshock

by David W. Oaks, Director, MindFreedom International

The past Wednesday morning after the historic USA election what were you doing?

I know what Ray Sandford, 54, was doing.

Each and every Wednesday, early in the morning, staff shows up at Ray’s sheltered living home called Victory House in Columbia Heights, Minnesota, adjacent to Minneapolis.

Staff escorts Ray the 15 miles to Mercy Hospital. There, Ray is given another of his weekly electroconvulsive therapy (ECT) treatments, also known as electroshock. All against his will. On an outpatient basis.

And it’s been going on for months.

Ray says the weekly forced electroshocks are “scary as hell.” He absolutely opposes having the procedure. He says it’s causing poor memory for names such as of friends and his favorite niece. “What am I supposed to do, run away?” Instead, Ray phoned his local library’s reference desk to ask about human rights groups, and the librarian referred him to MindFreedom International.

Ray called me at our office here at MindFreedom International about two weeks ago. At first I wasn’t sure I believed him.

Of course, MindFreedom International has documented proven cases of electroshock against the expressed wishes of the subject all over the world, including in the USA. MindFreedom succeeded in having the United Nations World Health Organization call in writing for a global ban on all involuntary electroshock.

But this is the first time I’ve been on the phone with someone getting court-ordered forced shock while living out in the community, on an outpatient basis.

This is the ultimate double whammy. I confirmed Ray’s story by calling two staff at Victory House as well as his court-appointed conservator, Tonya Wilhelm of Luthern Support Services of Minnesota.

Ms. Wilhelm said, “We are following the letter of the law.” She said the State of Minnesota had secured a variety of court orders that require Ray to have forced electroshock against his expressed wishes. Ms. Wilehlm says it’s all legal and she can’t do anything about it.

Krista Erickson, chair of MindFreedom’s Shield Campaign, sees it differently. “This is terrible. This is a serious human rights violation that should stop. I hope MindFreedom members and supporters speak out. Even if Minnesota is following the letter of the current law, the law ought to be changed. And Ray has not had the legal power to appeal to higher courts.”

I pointed out to Conservator Wilhelm that the public — when they find out about forced electroshock — is passionately opposed to their taxpayer money being used to force such brutality on citizens. Ms. Wilhelm did let slip that what is happening to Ray — involuntary outpatient electroshock — is not that uncommon in Minnesota.

But when Ms. Wilhelm found out we at MindFreedom are issuing one of our public human rights alert to you and others, at Ray’s repeated request, she said something chilling.

Ms. Wilhelm claimed she had a legal right to stop MindFreedom! Ms. Wilhelm told me, “Only I can give you permission legally to say anything publicly about this.”

I pointed out we are not a medical facility, and that if she falsely claims we’re doing anything illegal then this is defamation. Which really is illegal. Ms. Wilhelm laughed loudly in the phone, said “let our lawyers talk,” and hung up on me. I hope she hung up to read the First Amendment.

Let’s disobey Ms. Wilhelm!

Spread Ray’s alert far and wide! Speak out against this electrical torture, now!

Because… Remember… While the world marvels at the power of USA democracy:

If it’s Wednesday morning, then Ray Sandford is being led from his home — which is supposed to be his castle — to get another weekly forced procedure that can cause brain damage and wipe out memories.

Want to do something? Follow the jump.

Mind your freedom. Disobey Ray’s conservator now!

Forward this alert to all appropriate places on and off the Internet, IMMEDIATELY!

And take the *below* actions. Thank you. Ray and I are counting on you!

~~~~~~~~~~~~

* * * ACTION * * * ACTION * * * ACTION * * *

You can do this in a moment. It’s free! DO IT NOW!

E-mail your firm but polite message to Minnesota Governor Tim Pawlenty.

SAMPLE MESSAGE — your own words are best:

“Investigate the weekly involuntary outpatient electroshock of Ray Sandford. Every Wednesday morning, MindFreedom says Ray is brought from Victory House in Columbia Heights, Minnesota to Mercy Hospital for forced electroshock. Stop all forced electroshock today! Taxpayer money should not fund torture!” [Your name/contact.]

E-mail address: tim.pawlenty@state.mn.us

Or use this handy web form

~~~~~~~~~~~~

* * * ADDITIONAL ACTIONS TO SUPPORT RAY! * * *

1) E-mail a complaint to Luthern Social Services of Minnesota (LSSMN) about Ray’s conservator.

Sample message:

“Investigate allegations that LSSMN employee Tonya Wilhelm tried to stop a public human rights alert by MindFreedom International about her client, Ray Sandford, who is receiving weekly outpatient involuntary electroshock at Mercy Hospital in Minneapolis. If verified, please reprimand, fire and replace Ms. Wilhelm, and please place this in her permanent personnel record. Please support human
rights.” [Your name/contact.]

Use LSSMN’s web page

Or phone Luthern Social Services at: (218) 726-4888

You can copy your message to headquarters of The Evangelical Lutheran Church in America (ELCA):

info@elca.org

From ELCA’s web site about their church: “It’s a story of a powerful and patient God who has boundless love for all people of the world, who brings justice for the oppressed.”

More right here

2) E-mail a complaint to Allina Hospital and Clinics, owner of Mercy Hospital.

Sample message:

“Investigate allegations that your patient Ray Sandford of Victory House is receiving involuntary outpatient electroconvulsive therapy against his will each Wednesday at Mercy Hospital.”

Use this web page

Or phone: (763) 236-6000

3) Ray is open to visitors and supportive postal mail:

Ray Sandford
Victory House
4427 Monroe St.
Columbia Heights, MN 55421-2880 USA

MindFreedom will print out and mail to Ray some of your e-mail messages to the Governor and others, and put some on the web. E-mail a copy of what you write to news@mindfreedom.org.

~~~~~~~~~~~~

AND ONE MORE THING!

Say “no” to mental health system censorship!

Disobey Ray’s conservator now!

PLEASE forward this public human alert to all appropriate places on and off the Internet, IMMEDIATELY! Thank you!

Aging with AIDS

2008-11-11T23:04:00.006-06:00

I saw Magic Johnson on Larry King Live last week after Obama's victory. I hadn't seen him in a while and it made me happy to see him looking so healthy. I worked for a college paper in 1991 when the news came out that he had HIV and I remember what a big deal it was, not just a sad news item, but the bigotry, homophobia and misinformation about AIDS. My God, remember all that?

It hasn't gone away, though we hear less about it now.

Anyway, a recent story in the New York Times, "Speaking out for a group one unheard-of: Aging with AIDS," reports on aging Americans with AIDS, some of whom (like Johnson) have lived a long time on anti-retrovirus drugs, but also elderly who catch the disease from lack of safe sex information and/or easy access to condoms:

In fact, 29 percent of those infected with H.I.V. are over 50. And because the immune system deteriorates with age, the virus is all the more aggressive in older people....
There is also an alarming rate of infection among older Americans. In 2005, 15 percent of new H.I.V. and AIDS diagnoses were among people over the age of 50, according to the Centers for Disease Control and Prevention. Yet government recommendations call for routine AIDS screening only up to age 64, omitting the elderly population.
“What about people 65 and older?” Mr. Gold asked. “They’re having unprotected sex, they’re using drugs.”
He says that is why he continues his advocacy for people with AIDS and for stronger prevention efforts. He sits on both the New York and national boards of the nonprofit group Association of H.I.V. Over 50, attends City Council meetings and has spoken before Congress and the New York Legislature.
Not long ago, he visited a senior center in the Canarsie section of Brooklyn to discuss safe sex practices. The women who attended, “all over 80 years old,” he said later, rushed toward the table afterward for the free condoms he was distributing. (“They said to me, ‘It’s not for me, it’s for my grandson,’ ” he said.)
Politicians don’t like to talk about the spread of AIDS among the elderly, Mr. Gold says; nobody wants to hear about Grandma’s sex life. But he adds that change cannot happen without open discussion.

h/t to Beth Haller at Media Dis&Dat

Slumgullion #48

2008-11-10T22:40:00.004-06:00

Just a few good links. That's all you need, right?

Bush cuts outpatient Medicaid services -- You heard about this parting gift from our Commander 'n' Thief? The Wonk Room at Think Progress has the details:

After arguing that legislation to cut over-payments to private insurers would “harm beneficiaries by taking private health plan options away from them,” President Bush, on Friday, “narrowed the scope of services that can be provided to poor people under Medicaid’s outpatient hospital benefit.”

In which the Netherlands endangers reproductive freedom -- Sylvia at Problem Chylde writes about a proposed bill that wants any woman deemed unfit to parent to be forced to take contraception for two years or any children she bears will be taken away from her at birth. I followed one link backward from Sylvia to a column for the Toronto Star to a blog post at Disaboom -- isn't it nice to know someone at a major daily reads a crip site?

Where neurodiversity meets feminist theory -- Lindsay at Autist's Corner has a three part series where she assesses an article by Kristin Bumiller titled "Quirky Citizens: Autism, Gender and Reimagining Disability" in the summer issue of the women's-studies journal Signs. Interesting writing from a blogger I hadn't found until now.

When the wheels make the man

2008-11-09T22:37:00.002-06:00

The Desert Sun of Palm Springs, California, ran a short story last week with this headline:

Wheelchair stabber's sentencing delayed

The news is about a man convicted of stabbing and killing a friend over a dispute about a bicycle. No wheelchair was stabbed. No man in a wheelchair was even stabbed. In fact, it's the guy using the wheelchair that committed the crime.

Nice, eh?

Paralympics special airs today on NBC

2008-11-09T00:41:00.003-06:00

For Americans who didn't have access to what happened at the Beijing Paralympics this summer (and that would be all of us who don't have easy cable access to foreign TV where coverage did exist), there's a 90-minute special on NBC this afternoon that has gotten some good reviews.

If you want more of the same four years from now, the network needs to know:

It will be aired the (NBC) National Broadcasting Company on Sunday at 2:30 P.M. Eastern Standard time.

And also the Universal Sports Television Network on beginning Monday, Nov. 10th though the 16, at 7:00 PM Eastern Standard Time.

It is important that you tune in to these games because it is perceived as a test by these networks. It will be a test to see if Americans will watch disabled athletes compete in the same events as non disabled athletes.

Those reviews above are positive and supportive of better Paralympic coverage. They also try to be self-aware about the "inspirational" stereotype of disability, with varying success.

If you catch the show, post your thoughts on it in comments. Or, if you had access to coverage back in August and recall your favorite moment or athlete, post that and we can compare notes.

Things that crack me up #45

2008-11-08T23:32:00.000-06:00

I love me some variations on Wheelchair Guy.

Image description: A color photo posted to Flickr by clagnut shows a pale blue spray-painted Wheelchair Guy on a brown wall in a London bar. Wheelchair Guy's hands are upraised, with the right one holding a big wrench and the left one holding a large spoon.

Details from clagnut: "The Gents' symbol was displayed with kitchen utensils and the Women's was displayed with tools. Hence the combination for the unisex Disabled loo."

On the language

2008-11-07T09:47:00.005-06:00

I want to go back to that acceptance speech Obama gave Tuesday night and how it began:

If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives, because they believed that this time must be different; that their voice could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled – Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.

It's the answer that led those who have been told for so long by so many to be cynical, and fearful, and doubtful of what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.

It's been a long time coming, but tonight, because of what we did on this day, in this election, at this defining moment, change has come to America.

I especially like that he phrased our inclusion as "disabled and not disabled" instead of "disabled and able-bodied" or some other variation ("special needs and average needs" "handicapable and... what?"). My preference for "nondisabled" over "able-bodied" is based on semantically addressing several problems with the (inevitably-problematic) dichotomy:

"Disabled" and "able-bodied" are not opposites, both because disabled people are not "unable" and because some disabilities are developmental or psychological more than physical, which "able-bodied" implies. And for that matter, "disabled and able-bodied" is a lop-sided comparison when you understand the difference between impairments (actual conditions of an individual or body) and disability (the social phenomena). Also, the double prefix of "nondisabled" (or "not disabled") inclusively centers disabled people in a way that "disabled and able" cannot.

It's interesting that Obama mentioned "not disabled" people in the same way he mentioned "straight" people, as a complement to "disabled" and "gay," the historically marginalized groups. Putting "gay and straight" together in rhetoric is pretty common, but "disabled and nondisabled" really isn't that common -- we usually stand alone with lack of disability so presumed as the norm that it needn't be juxtaposed at all. That phrasing and inclusion in the list of marginalized groups felt really good in and of itself, even separate from where it leads in an Obama administration.

So often we never come up.

I was looking for this

2008-11-06T23:33:00.005-06:00

I Googled "Obama wheelchair" earlier tonight in hopes of perusing pictures of Obama meeting disabled Americans on the campaign trail, but I couldn't find one. Just a cartoon of McCain in a wheelchair driving himself off of a cliff -- apt but ableist. (Yes, I know a wheelchair is not representative of all people with disabilities, but it's the quickest way to find a visual and it does represent my physical impairments.)

A similar search for "McCain wheelchair" shows that same cartoon repeatedly, McCain feeling up a seated guy's face (presumably faith-healing a military vet) and pushing his wife Cindy's chair after she had a minor stroke back in 2004. There are also McCain-less photos of disabled people getting arrested outside his Washington, D.C. office earlier this year when they tried to impress upon him the need to support our freedoms with the Community Choice Act.

So Google didn't much help me feel very represented.

And then I wander over to The 19th Floor and Mark has a photo of himself and then-Senator Obama from 2005. Image description from Mark's post, but go check out the photo, if you can:

a February 2005 photo of me and then-Senator Obama taken in the tunnels under the Capitol building in Washington, DC. Obama is standing to my left in a charcoal suit, leaning forward slightly and smiling at the camera. I'm wearing a leather jacket over a shirt and tie, my facial expression entirely too serious.

Excellent. Now I can back slowly away from the computer and go to bed.

Imagining the future

2008-11-06T22:52:00.003-06:00

If you're like me, you spent a bit of time each of the past two mornings trying it all out: President-Elect Obama.

President Barack Obama.

A black president. A smart, thoughtful, gracious man in the White House.

Nope, I have no idea what that might feel like -- even the smart, thoughtful, gracious part has been too long to recall clearly. But I'm practicing imagining it, and it feels good.

The beginning to his acceptance speech has helped me imagine:

If there is anyone out there who still doubts that America is a place where all things are possible; who still wonders if the dream of our founders is alive in our time; who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives, because they believed that this time must be different; that their voice could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled – Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.

It's the answer that led those who have been told for so long by so many to be cynical, and fearful, and doubtful of what we can achieve to put their hands on the arc of history and bend it once more toward the hope of a better day.

It's been a long time coming, but tonight, because of what we did on this day, in this election, at this defining moment, change has come to America.

And I have been trying to reconcile that with the gay marriage bans in California, Arizona and Florida, because I also cannot fully imagine how these rejections of the basic rights of some beloved friends hurts them. Our failure is wrapped up in our success in a pretty intimate way, I'm afraid.

And then there's the passage of Washington State's Assisted Suicide Initiative (called Initiative 1000), which I'll admit I was aware of but not keenly attuned to like I certainly should have been. Most people I know won't see the connection here: Assisted suicide is about personal freedom, right?

It would be about personal freedom if we had a health care system that supported alternatives, like Medicare that paid more than $162/day for all medical expenses (including drugs -- painkillers) of people in hospice. Initiative 1000 was not an issue that arose from the grass roots in Washington, as Stephen Drake points out. It was funded by wealthy outsiders, which does raise the question of what that money is all about, doesn't it?

The future I'm imagining certainly includes hope. But that's not nearly enough.

Things that crack me up #44

2008-11-05T13:16:00.001-06:00

A disabled access restroom for vikings!

Image description: A color photo posted to Flickr by mwboeckmann of a handmade restroom door sign. The background is red with a Celtic black boarder of serpents. Inside this frame is a green -- maybe aged brass or bronze? -- figure of a guy wearing a metal helmet that has a nose guard. He's parked in Wheelchair Guy position, facing rightward, and the wheel of his chair could also be a round shield.

Voting: On the importance of process

2008-11-04T13:03:00.003-06:00

A reminder of why the nation continues to wrestle with the technology of voting machines. From seattlepi.com:

Like other vote-by-mail counties, King County will leave a few open to allow disabled people to continue voting with a new generation of machines. And in future years, they'll be left open for 20 days before elections -- not for nostalgia, but to allow some such as 55-year-old Gary Pearson -- who has used a wheelchair since he was 19 -- to vote with dignity.

On Tuesday, Pearson will wheel himself down the block from his house in Wedgwood to use the polling place at Decatur Elementary School. Partially paralyzed, he'll push a touch screen with his wrist to cast his vote. He will not need somebody to push pins through ballots or color in bubbles on a ballot.

And he'll vote like most of us -- privately.

Although results are the focal point of elections, for some such as Pearson, the actual voting process means a lot.

The process means more than the actual vote or election outcome, in my opinion. Anyway:

The old machines -- in which voters punched a card with a pin -- were too high up to see the candidates' names. He couldn't punch the cards, anyway, with his hands hobbled. The same was true when new machines required filling in bubbles.
For others, voting-booth curtains close for privacy while voting. He'd have to ask his young sons to do it for him. Or he'd ask a poll worker.

Some use an elbow to push the screen, or a pin held in their mouths, Pearson said. Absentee ballots were a possibility, but difficult....
The new machines also allow blind people to vote with more independence. Blind voters can wear headsets and respond to a voice reading choices using a keypad. King County does not have absentee ballots in Braille, and because many blind people do not read Braille, the machines are a better option.

"I hear excited utterances (about the machines) all the time because they can vote privately for the first time," David Lord, president of Disability Rights of Washington, said.

I written previously on the importance of having a polling place with election officials to go to, as opposed to relying solely on mail-in ballots here and here.

Swallowing the world

2008-11-04T11:55:00.000-06:00

"I set out," [Terkel] said, "to swallow the world."

Robin at Writhe Safely has a beautiful tribute to Studs Terkel. Go check it out, especially if you're bored with election news. Terkel is a fitting alternative on this day when everyone gets to speak their mind.

"If I did one thing I'm proud of, it's to make people feel that together, they count," he said last year.

Finally!

2008-11-04T11:46:00.009-06:00

Image description: Button courtesy of Nezua. It's round, reflective, 3D-ish and looks like a real lapel button. It's blue with a few stripes of red and white at the bottom. It reads "I VOTED," with the "v" as a bold red check mark over a landscape and a blue-toned Obama campaign logo. The word "CHANGE" arches subtly along the top, blue on blue.

It's done! And it took me just a half-hour from start to finish here in my little town. Everyone votes at the same place, with the rec center gymnasium divided into the three local precincts.

The weather is stunningly beautiful today, and that made the crowded parking lot less stressful. If I'd driven and parked myself it would have maybe taken a half hour to find a place to roll out my van's ramp, but I went with family who did the parking for me. There is disabled access parking but it was all taken. The entrance is all level with no steps anywhere, and the three sets of double doors were all propped open. The disabled access door had a sign on it saying that anyone needing assistance with voting could ask an election official for it.

There were two people standing outside the building who were poll watchers, I think, since I didn't see an "election official" badge on either of them. I didn't know them but chances are good they were Republican poll watchers as there have often been some in the past despite this rural area being a conservative stronghold.

I got to the poll at about 9:30 am. Just inside the gym is the first line, for those registering today as they vote. Once I got around these newbs and found my precinct table to sign in (no line there), I had to wait in another line for a couple minutes to get my ballot. A guy next to me said loudly to his friend that I shouldn't have to wait in line and someone should be there to "take care of that." He wasn't listening when I replied that there was no reason I couldn't wait in line like everyone else -- I didn't need to rest: already sitting. I didn't need special help to hand in my slip and get my ballot. It was a quick line anyway.

Then the line to vote was perhaps 15 minutes long, and that was simply a line to use a booth or table stall. People who had black ink pens and didn't mind filling out their ballots while standing finished before they came to the front of the line. People everywhere chatted, but mostly not about politics. I heard a conversation between a couple people pondering how to vote for the school bond. I heard someone laughingly say this was a lot of lines to stand in just to get a sticker. The mood was busy and spirited.

An election official told me they'd been running about 200 people through per hour since 7 am. He also said there were no electronic machines to use. They'd had some the last time I went to vote, but according to this guy, all machines in Minnesota were taken away. So it was a low tech procedure all the way, with just the machine that accepts and approves your ballot at the end being the one automated moment.

No one offered me special assistance, but I didn't need any and came with my own nurse anyway. If I'd needed help there were plenty of poll workers there who would have provided it.

My precinct had about ten standing voting stalls and 16 seated table stalls and the line moved smoothly with another line that also moved well to give your ballot up to the machine. The other two precincts have their own similar set-ups on the other side of the gymnasium. And then there's the happy guy at the end handing out "I Voted Today" stickers.

I voted: for Barack Obama, for Al Franken (the least unappealing candidate for U.S. Senate -- I hope he's more inspiring in office), for Rep. Collin Peterson, against a local state incumbent named Ron Shumanski who exists principally to say no to all good ideas for the community (he'll surely be re-elected in this very conservative district), yes on the Minnesota amendment for conservation and the arts (I was torn on this one), and yes on a couple of badly needed school bonds that will surely fail as they always do. And I voted on some of the local stuff: school board, county commissioner, an unbelievable number of judges on the ballot, mostly running unopposed.

I was done by 10 am (a half hour total) and went out to breakfast with my parents. Coffee, one egg over-easy and hash browns. I'm working with a brand new nurse this afternoon so it feels especially good to have my part in the election done.

Is it too early to be really excited about this?

Whoooooo.

"I had a choice, and I chose life. Does that make me pro-choice or pro-life"?

2008-11-03T21:39:00.005-06:00

Tierney Temple Fairchild writes in the Washington Post about her ten-year-old daughter and what it means to her to "choose life":

I had a choice, and I chose life. Does that make me pro-choice or pro-life? Our political parties tell us we can't have it both ways. If I am pro-choice, then I must be for abortion. If I am pro-life, I may be lauded for a heroic choice when in fact none existed.

She continues:

In this economy, I must reflect on the circumstances that allowed us to make ordinary what some view as heroic. We were fortunate to have a health-care plan that covered Naia's medical bills. We were fortunate to have enough money to cover three weekly therapies carrying co-pays of $10 each. We were fortunate to have the educational backgrounds necessary to read research and advocate inclusive education for Naia. We were fortunate to have the lessons of discrimination and perseverance from another choice some also label heroic, interracial marriage.

Now, I look at my budding 10-year-old, and I see her beauty, poise and humor, not her disability. What I have learned is that we are not exceptionally burdened. Naia has some novel developmental and social challenges. Nevertheless, we and others are often struck by how typical she is, integrating with peers, reading on grade level and riding horses. All choices may not have the same result, but it is crucial that we all have the opportunity to make our own decisions.

If it's our choices that define us, choices that allow us to face down fears and lead us to our greatest achievements, what might come from taking those choices away?

Fairchild references Sarah Palin and her infant son Trig, but doesn't specifically mention this fact: Palin doesn't believe in allowing women this choice and neither does John McCain and the Republican party.

Oh happy day, tomorrow!

Vote if you haven't already.

h/t Patricia E. Bauer

How it should be, almost

2008-11-02T18:51:00.003-06:00

I had an appointment with my pulmonologist last week. Well, I thought I had an appointment. He's a doctor I really like whose office is really too far away. But, quick, name three doctors you've had that you loved? I currently work with two (my primary doctor and this pulmonologist) and I know how rare it is to love how they do their job to help me. I'm in charge and they're very bright, talented consultants who give me advice. That's how all health care should feel, right?

So I drove two hours to see this guy, got there and found they had me scheduled for an appointment at a different office across town. It was 4 pm, plus the doctor wasn't across town, he was there with me. It was just an inexplicable screw-up. While I sat in the waiting room for about an hour at least four people funneled through for this same doctor. It was an amazingly efficient place.

Within two hours of my showing up more or less unexpected, I'd talked with a respiratory therapist, a nurse practitioner, and my doctor, who stayed late to meet with me and never once acted like it was an imposition. I hadn't seen him in a year-and-a-half and I went mostly to make sure my trach and vent were still the appropriate pieces of technology to be counting on for air. This idea was prompted by the fact that my trach model has recently been redesigned and it never said so on the package, so some important design differences were first noticed while changing trachs. (!) And also because at least one person has died in the past year from a vent malfunction where this model I use automatically turned itself off without alarming. (!) I've got my own personal safeguards against that, but still.

Anyway. We talked about all that. I got some new medications to try, both for allergies and to manage lung secretions (a typical vent-user issue).

And then my doctor did something that explains why I adore him so. He showed me how to change a vent setting.

Now, I know how to turn the dials and all, and I do conscientiously change some settings as needed. But he showed me something new to try if I felt short of breath. Most medical professionals won't even discuss this type of thing -- this self-empowerment in the use of a highly complex medical machine. They write the prescription for the settings and want you to leave it alone. And if you're not going to follow their directions, they want to make sure no path of liability leads back to their door.

There's some basis for medical professionals not wanting you to use medical stuff willy-nilly, of course. Prescription vent settings exist for the some of the same reasons pharmacies are not bag-your-own types of stores. It takes knowledge to know exactly what drug or volume setting will be best for your health. (A bag-your-own pharmacy sounds kind of thrilling, doesn't it?)

But here's a difference for some of us in those two scenarios: When you take a prescribed drug and there's a bad side effect, you can just not take the next one and no one will show up to shove that pill in your mouth just because the prescription said that was the recommended treatment. In contrast, I've got a supply rep (he's also an LPN) who occasionally shows up to check my vent and forces it back to the prescription settings. He does this all the time, and I change them back as needed once he leaves. This is all so his butt is covered, though he could, alternatively, just document that I have changed the settings. I'm an adult with my wits about me.

No, he changes them to what I have decided doesn't work quite right for the moment (and something slightly different may work better later that same day or a few months from now). Then he lectures me on getting a prescription to reflect the change, or a sliding prescription, if possible. The supply rep did all this mere hours before I trekked to the doctor who showed me how to change the settings if I wanted to.

I did not ask the doctor for a new prescription. I don't want a new prescription. I want my prescription to reflect the doctor's educated opinion -- and I want that opinion documented in the prescription so other doctors who might see me in an emergency give it credit as a baseline prescription. And then I want the freedom to follow that or not.

I'm not reckless. And my doctor gives me credit for that. As he should.

About my new medications, though: They are nothing rare. And they cost over $700.

That is not how it should be.

And November begins

2008-11-01T04:12:00.002-05:00

I’m having trouble getting and staying online these last few days. I’ve a few posts I’m trying to finish and publish but my connection keeps foiling me. Failing me? Foiling me.

I’ve signed up for National Blog Posting Month again this November (see Sara's nerdly-spooky icon for the event on my sidebar just beneath the Obama icon), which means I should be posting everyday for the next 30. We’ll see if the intertube gods can help me make that happen.

In the meantime, I’m remembering an amazing man. Studs Terkel died yesterday at age 96.

Ohio study finds many polling places with access problems

2008-11-01T01:55:00.000-05:00

Ohio is a swing state, you know.

From the Columbus Dispatch in Ohio:

Dozens of Franklin County polling sites failed to meet accessibility standards for voters who need wheelchairs or walkers or have other disabilities, according to a study that Ohio State University students undertook this summer. . . .
The study, conducted from June through September, says that only 10 percent of the sites reviewed met all 63 items the Ohio secretary of state's office uses to determine whether polling sites meet the Americans with Disabilities Act and state standards.

Graduate occupational-therapy students at Ohio State, working with the Ohio Legal Rights Service, randomly selected 217 of 533 polling sites in the county to study.

They found that 22 percent did not have a fully accessible entrance, only 25 percent have an adequate number of accessible parking spaces, and 49 percent have no parking space for a wheelchair van.

Is your poll site accessible?

Here are some tips from the article's sidebar, with a few additions from me:

Voting-day tips:

• Call your polling place and ask about parking or which entrance is the most accessible. You can get that number by looking up your state or county elections office -- many have websites and toll-free numbers.

• Consider avoiding peak voting times, especially if you have difficulty standing for a long time. Midmorning is usually a slower period.

• Consider taking a friend to assist you.

• Consider bringing a lightweight portable stool or lawn chair if standing is tiring or painful. Also consider bringing a bottle of water and snack to help you wait in line comfortably.

• Consider bringing a sample ballot you've already filled out, or a list of your chosen candidates and positions on initiatives to help you fill out your official ballot more quickly.

For Ohio voters, especially those in Franklin County:

• Consider voting at Veterans Memorial, 300 W. Broad St. It is fully accessible to the disabled, although parking is a distance from the polling site.

• Franklin County voters who need assistance once they get to a polling place (transportation not available) can call 614-466-7264 or 1-800-282-9181. A team of occupational-therapy students from Ohio State University will arrive to help them.

• Call the same numbers to file a complaint about lack of access to a polling place.

Things that crack me up #43

2008-10-29T01:25:00.002-05:00

Image description: A color photo posted to Flickr by zombie squirrels shows a Sea World, San Diego, sign with art deco stylings. The text of the sign directs "Disabled" to the left and "Child Swap" to the right. If you have a disabled child you'd like to trade in, apparently you're out of luck.

Palin's speech about kids with disabilities

2008-10-25T23:05:00.005-05:00

Did Palin's speech last Friday in Pittsburgh meet my low expectations for details on actual concerns of people with disabilities?

Palin reiterated her convention announcement that, if elected, "families and caregivers of special-needs children all across this country" would have a "friend and advocate in the White House." That's sweet, and needed. She might have said she'd be a friend and advocate to actual disabled people too.

She did reference both the IDEA and IEPs, though she never mentioned the ADA -- the premier disability civil rights law that secures not just friendship and advocacy, but citizenship rights. She pledged to create a sort of voucher program that would allow federal funding for children with physical and developmental disabilities to be used at either public or private schools the parents choose.

The catch? There are several: Portable federal funding will only apply where state funds are deemed portable as well. And no private or parochial school will be required to accept or accommodate these students, which is already a serious problem with educational voucher programs.

She also declared that a McCain-Palin administration would fully fund the IDEA, seriously underfunded now for decades. That would be welcome, except she made clear that availability of this funding relies completely on cutting it from earmarks elsewhere. So, once your state passes education funding reforms designed to deregulate the public school system and her administration proposes a federal budget that moves earmark funding to IDEA and Congress approves it, then parents can look for a private school that will accommodate their disabled child, though those schools will not be required to make the effort.

Palin briefly mentioned the high "medical and other costs" concerning parents of disabled kids, but, predictably, didn't mention how a McCain-Palin administration refuses to support the Community Choice Act and would limit insurance opportunities for kids (and adults) with pre-existing conditions through their health care plan.

Palin also falsely claimed that an Obama administration would tax the special needs trusts parents set up to protect and support their disabled children into the future. That's not true, as independant estate planners (and the Obama campaign) have clarified. (h/t Patricia E. Bauer)

In contrast, as stated on a dedicated page at their website (something the McCain-Palin site lacks), the Obama-Biden administration has a four-point plan to support disabled people:

1) provide educational opportunities (fully funding the IDEA -- yes, before McCain took on Palin as a running mate Obama had pledged to do this),

2) end discrimination and promote equal opportunity (this means funding the offices already pledged with the task, like the EEOC, where there's an astounding backlog of disability discrimination complaints),

3) increase the employment rate (Obama mentions that insuring federal job opportunities for the disabled includes fully accessible information technology, while McCain claims he can't use a computer himself because of his disabilities), and

4) support independent, community living (including the Community Choice Act).

Read the detailed .pdf of the Obama-Biden commitment.
Read Palin's speech yourself at the McCain-Palin campaign site.

Vote early

2008-10-25T22:11:00.001-05:00

Two years ago, I wrote something about how I thought absentee voting as a standard practice for disabled citizens, or as a plan for all citizens, was detrimental to the rights of disabled people. I believed that it would undermine the push for accessibility at all the schools, churches and other public polling places required by law to have disability access -- not just for the actual voting, but in building access:

One solution to this whole mess that seems to be gaining currency is voting by mail. Absentee voting is being expanded to "permanent" absentee voting and then to "no excuse" absentee balloting and voting by mail for all. Many claim it's a much better system and supposedly many disabled people would prefer to always vote by mail.

I think it's a bad idea. Oh, it might be smart in the short-term while the numerous problems with voting are minimized, but in the long-term it's maybe bad for democracy and certainly bad for the disabled. If the solution to problems of accessibility is to not require anyone to show up, then all the churches and rec centers and other polling sites that are not currently accessible will have less pressure to become so. And all the poll workers who will be trained on how to interact with disabled people to help them vote will never be trained. And all the disabled people who rarely get out of the house because of Medicare homebound laws* and lack of transportation, will have one less reason to interact with the world. All this equals less accessibility and freedom for the disabled in the long-run.

Additionally, I believe the assurance of maximizing privacy and actual casting of the votes disabled people choose themselves can only happen at polling sites.

I've changed my mind on this. I do still believe there's value to meeting with your community and voting on the same day, and to this activity requiring accessibility of those public meeting places. And I do believe that a disabled individual who physically needs help voting absolutely needs ready access to a system that is supposed to provide a neutral assistant to help, if necessary. That neutrality may not be available for many disabled voters asking someone in the privacy of their own home for help. Family or hired caregivers' politics can differ radically from that of the person needing assistance, so somehow the availability of that check on abuse needs to be maintained.

But read what my friend Skylanda has to say about the importance of voting early. Here's an excerpt:

I sat in on a meeting a few days ago for partisan volunteers who are aiming to work the precincts on election day. It was an interesting talk, from a strategy perspective. The on-the-ground democratic strategizers are predicting - assuming, preparing for - regular and systematic challenges to every voter with any iota of irregularity worth challenging in any precinct that has traditionally leaned blue. A misspelling of a long ethnic name, a discrepancy between "street" and "avenue" on your drivers license, a typo that transposes a couple of numbers in the address on your voter registration card. If you live in a heavily democratic zone, expect there to be any guff that can be cooked up over your right to vote. It may not happen, this may be a regional over-reaction to national scrapping between the big guns, but after Florida circa 2000? I'm not gonna call it conspiracy theory; the democratic brass aren't calling it that either.

In historically democratic precincts, it won't just be about throwing individuals off the rolls - that's small potatoes. The real goods are in a different goal: slowing down the lines at the polls until people by the handful or the dozen or the hundred get bored, cold, or compelled to go back to work/pick up their kids from daycare/return to the demands of their lives before they reach the front of the line to cast their vote in those blue-hued precincts. Even if your personal data line up like the moon in the seventh house, the time will be taken - if you are in those precincts - to inspect your credentials. Slowly. Carefully. Painstakingly. Just, ya know, to make sure you're legit. While someone in line behind you considers if they can really wait another five minutes before their kid's daycare closes, or their afternoon shift starts, or that chill in the November air turns out to be too much for their elderly lungs....

No one who has the ability and the wherewithal to vote before November 4th should be taking a space in line that day.

While many bloggers voting early have reported short waits, Mustang Bobby at Shakesville writes that the happy experience did take him four hours in Miami-Dade County.

Here's the link to find out about absentee and early voting in your state.

Remember to bring photo identification. And bring a sample ballot that you've already marked, if possible, to shorten the time you spend in the voting booth, whether you get there early or on November 4.

Most importantly for everyone -- be persistent and get it done. By this, I mean go early. If you need a ride, ask someone. Don't be afraid to get a fresh ballot if you make a mistake. Don't let anything discourage you, voting is your right. Just get there and be counted.

Disability Blog Carnival #48 is up at Barriers, Bridges and Books

2008-10-24T14:25:00.003-05:00

The latest Disability Blog Carnival, on the theme of "Capacities and Capabilities" is up over at Barriers, Bridges and Books. Go check it out!

And participate in the next carnival over at I Hate Stairs where the theme will be "Lists." Because I'm lazy today, I'm copying the following submission info from Penny at Disability Studies, Temple U, who keeps the whole carnival traveling over these intertubes:

Dos and Don'ts, Top 10s, bucket lists, packing lists, to-do lists, reading lists, shopping lists, you name it, [Blake at I Hate Stairs] wants your links, by all the usual means. You can leave a comment here, or at I Hate Stairs, or submit a link for consideration through the blogcarnival.com form (warning: inaccessible CAPTCHA feature). Or you can put the phrase "Disability Blog Carnival" in the text of your post, [Penny] usually finds those too. Deadline for submissions is Monday, 10 November, and the carnival should post on Thursday, 13 November.

Also, browse previous carnivals through the blog carnival page's listing of "past hosts."

Image description: The image above is CripChick's icon, made for a previous carnival. It shows a color image of a self-portrait by Frida Kahlo with the words "DISABILITY BLOG CARNIVAL" in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting "Self-Portrait with Portrait of Dr. Farill" described in detail in both English and Spanish here.

Palin to speak today on disability issues

2008-10-24T01:32:00.001-05:00

I haven't really blogged yet about my opinion on veep candidate Sarah Palin and her claim that having an infant son with Down Syndrome gives people concerned with disability issues a "friend" in the White House. Frankly, I don't find her a credible enough candidate to get very wonky about: I find anyone who believes that the End Times will occur in their lifetime fundamentally unfit to be a steward for the future of my country.

But anyway.

Palin is expected to speak in Pittsburgh today, and according to a Palin advisor she will offer specific policy details of how a McCain-Palin administration will be of any use at all to people with disabilities. It will be interesting to see her pledge her advocacy while simultaneously opposing funding for services to assist disabled people.

Earlier this week in Denver, Palin spoke against a Colorado ballot initiative designed to address the wait list of over 12,000 developmentally disabled citizens needing services like home health care and job training. Although there is reportedly no organized opposition to the initiative, Palin made a point of expressing her lack of support for Colorado disabled waiting years and years for help.

What Palin won't be mentioning in her speech today: McCain's dismal health care plan and how its goal of deregulating health insurance will assuredly shut out many Americans with pre-existing conditions -- like, for example, Down Syndrome. Or McCain's refusal to support the Community Choice Act, a bill designed to break the nursing home monopoly on government-funded health care and allow people to receive care in their own homes.

But let's see if she can play the acronym game. Look for some sort of minimal competency on the ADA, IDEA, and IEPs. See if she can do better than the rote speech on "curing" autism. Listen for even one mention of aid for adults with disabilities, those pesky grownups that should be part of any genuine "commitment to protecting life." If she references her choice to not abort a child with developmental difficulties, wait in vain for her to say what her policy details do for institutionalized disabled girls or women who get pregnant by the rape of their caregivers. Those women (possibly institutionalized due to lack of funding alternatives) would be forced to carry the fetuses of their rape to term under McCain-Palin policies, of course.

Look also for some more baby-cuddling because that's substantive policy we can all appreciate.

h/t several times over to Patricia E. Bauer

Things that crack me up #42

2008-10-22T01:44:00.003-05:00

Image description: A color photo posted to Flickr by まてぃあすMattias shows a complicated sign for priority seating on a Tokyo commuter train. The sign shows the stick figure images of five people in green with the reasons they get priority seating highlighted on their bodies in orange. The first guy holds an orange cane (because he's elderly, I think), the second figure is a pregnant woman with three straight cartoonish lines (usually for indicating motion or noise) emanating from the orange heart in her big belly. The middle figure holds an orange infant. The fourth figure wears a giant orange sock, er, cast, and carries an orange crutch. Or maybe it's a cricket bat. And the last figure has orange double parentheses showing off his orange and apparently troubled heart, beating uncertainly in his chest. It's quite a lineup, really.

McCain can't use a computer because he's disabled

2008-10-21T19:33:00.007-05:00

About a month ago ABC news' correspondent Jake Tapper reported on John McCain's choice to not use computers. Barack Obama's campaign had just released an ad criticizing McCain for being out of touch in a number of ways, including his self-confessed computer "illiteracy."

Tapper explains for us, though:

Assuredly McCain isn't comfortable talking about this -- and the McCain campaign discouraged me from writing about this -- but the reason the aged Arizonan doesn't use a computer or send e-mail is because of his war wounds.

I realize some of the nastier liberals in the blogosphere will see this as McCain once again "playing the POW card," but it's simply a fact: typing on a regular keyboard for any sustained period of time bothers McCain physically.

He can type, he occasionally does type, but in general, the injuries he sustained as a POW -- ones that make it impossible for him to raise his arms high enough to comb his hair -- mean that small tasks make his shoulders ache, so he tries to avoid any repetitive exercise.

Again, it's not that he can't type, he just by habit, avoids when he can, repetitive exercise involving his arms. He does if he has to, as with handshaking or autographs.

Now, I have no doubt it's true that McCain's injuries affect him enough that typing causes chronic pain that the man would rather avoid. And I've also no doubt he has minions who can and should do many of the computer-related tasks of a busy U.S. Senator and presidential candidate.

But Tapper explicitly claims McCains lack of computer use is not a choice and is because of physical impairment:

It's certainly possible that the Obama campaign did not know this, since McCain makes it sound in interviews as if this is a matter of choice, not discomfort because of his war wounds.

So, McCain is not computer illiterate, though he did once say he was. (That's okay. I know a few septuagenarians on a steep computer learning curve.) And he can type, he knows how and can physically do so, Tapper says. It's just so uncomfortable that he chooses not-- no, wait. It's not a matter of choice. His discomfort means he cannot.

Except that is total crap.

Plenty of us on the intertubes manage to tap something out now and then without full use (or any use) of our fingers, hands or arms. There's voice recognition software and even free software that allows the somewhat tedious-but-effective typing with a mouse instead of a QWERTY board. I used the latter for a while last year and didn't even need to sell one of my many cars or houses to make it happen.

Here's my point: October is National Disability Employment Awareness Month. One of our presidential candidates has significant physical impairments that, according to Tapper, his own campaign claims are the reason he cannot readily use a computer. Of the 56 million Americans with disabilities, about 65% of disabled adults are unemployed.

Let me say that again. 65% of disabled Americans. Conservatively, that's 6 out of 10 disabled adults without a job. Compare that to the national rate of unemployment, currently freaking everyone out at a whopping 6.1%.

The rate of unemployed disabled Americans has remained virtually unchanged since WWII, so you might say that it's an issue needing knowledgeable and committed public officials addressing it. And McCain either does not know that physical disability is not an excuse for not using a computer, or he does not care if he is perpetuating the stereotype that disability makes a person incapable of a basic skill needed for employment in today's workforce.

Here's a one-minute YouTube video, with in-screen captioning and open audio description, on the topic:

Brief description of video: Karl Rove, McCain campaign advisor, states for a FOX News interview that McCain can't use a computer because of his war injuries. His voice and the audio description continue as a number of disabled people, with prosthetic limbs, amputated stumps, and mouth pointers type at computer keyboards. A final collage of these computer users includes an image of FDR in his wheelchair, then fades into a photo of Obama and chants of "Yes, we can!"

Cross-posted at Alas, A Blog

Things that crack me up #41

2008-10-15T00:35:00.006-05:00

Image description: A color photo posted at Flickr by sobriquet.net shows a blue sign from a train or train station with white lettering that has been vandalized. Whole words and some letters have been whited out so that the sign reads: "On request eat an elderly or disabled person."

This is progress. Those willing to help will now wait for our request.

Things that crack me up #40

2008-10-11T19:16:00.004-05:00

Image description: The color photo posted at Flickr by drewm shows a closeup of a sign, apparently for disabled access parking. There's a big white "P" on a blue background just above the symbol of Universal Access Wheelchair Guy, only Wheelchair Guy appears to be holding, well, I think it looks like a crown that royalty might wear. Beside these two images are the words "Disabled badger holders only." Is it possible the crown image is really a largish weaselly creature?

I know there's significant competition for parking spots everywhere these days, but these extra requirements just exhaust me. Now I have to find a badger that will sit in my lap?

Friday Music: Kristen Hersh

2008-10-10T00:32:00.007-05:00

Kristen Hersh began performing in the college-radio band Throwing Muses at age 14. She's been writing music, performing and touring her whole life, with the Muses, as a solo act, and with her other band 50 Foot Wave. (Throwing Muses included Hersh's half-sister, Tanya Donnelly, who went on to form the Breeders, Belly, and have a solo career herself.)

Photo description: The photo shows Hersh, standing with arms crossed in front of her, looking to the camera. She's wearing a black sweater and her hair is blonde here. She has startling blue eyes.

Hersh has been public about her troubles with mental illness, both difficulty with diagnosis and how her mental processes relate to her music. From a March 2008 interview with Scotland on Sunday, Hersh explains how she writes songs:

“It’s not a calming endeavour,” she says. “It’s intense. When it first began it was considered hallucinations, but no amount of medication would make the songs go away. I disagreed with the doctors’ diagnosis of schizophrenia and talked them down to bipolar which, if nothing else, kept me off of those scary meds that they had put me on.”

Why did she not accept that she was schizophrenic? “I believed in what I was hearing. And I still do. But that is one argument you can’t push through the medical community – that just because they don’t hear it doesn’t mean it isn’t there. The music doesn’t seem to be in me or come from me. I truly believe that it’s there and I’m just copying it down.”

Many people believe that there is a direct correlation between bipolar disorder, or manic depression as it was once known, and the artistic imagination; the rather romantic theory is that the condition actually drives creativity. But Hersh doesn’t buy this. “I have never had a good experience with mania,” she says. “It’s also hard for me to relate to the idea of depression as a waifish sadness. It was more of a shameful darkness. And I would certainly never write any songs when I was depressed. I don’t want creativity to be associated with illness in any way.”

And from a 1988 interview in Big City Redneck, Hersh says:

Personally I don’t want to think that you could make art from mental illness, you should only make art or science from health. At the same time I have to admit I did turn out bi-polar. But I think they get it backwards, I don’t think I play music because I’m bi-polar. Music needs to be played and in order to do it I have to be bi-polar. If that makes sense. It doesn’t does it? I don’t know if I’m expressing mental illness in my music.

Hersh is part of CASH (Coalition of Artists and Stake Holders), which, as I understand it, is an endeavor to remove the middle men of the music business from the equation so that artists and their audiences can interact more freely. One example of how this works is that tracks of Hersh's latest music are available at the CASH site, and fans can download them for free (if you're a cheapskate), but easily donate what they believe the music is worth directly to the artists using PayPal.

YouTube videos:

A favorite of mine, from Hersh's first solo album Hips and Makers, "Your Ghost" with Michael Stipe of R.E.M. Here's Hersh's latest band, 50 Foot Wave, playing an updated version of the song. And here's an acoustic live performance by Hersh alone in Athens earlier this year.

"Gazebo Tree" -- I saw Hersh sing this on a Lilith Fair tour back in the '90s. This is a 2007 live performance in London.

"A Loon" -- From Hips and Makers, this is a 1994 video filmed in Amsterdam. Beautiful cello played by Martin McCarrick. The lyrics for "A Loon":

Some store
I'm not going back there anymore
Wandered in
Don't think I'll do that again
No I don't think I'll do that again

I swear
Look at me cross-eyed and I don't know what to do
No I don't know what to do
Crazy loon

There's a room in his pallet
There's a pillow for his head
Sees an offshoot in his bottle
When he wants to see me dead
Heirlooms A loon
Never thought I'd see that silly grin
Never thought I'd see that fool again
Never thought I'd love that lunatic

Nothing left to dance around
What a hero
What a black and blue bird
What a loon, A loon
What a loon, A loon

"Me and My Charms" -- Another of my personal favorites, again from Hips and Makers. This is a 2007 live performance from Pittsburgh.

"Sundrops" -- Another Hips and Makers song. A live TV performance from 1994, and also a great example of Hersh's guitar skills and style.

"In Shock" -- From Hersh's solo album, Learn to Sing Like a Star.

"Dizzy" -- A Throwing Muses tune from their Hunkpapa LP. A 1989 live performance.

"Bright Yellow Gun" -- The video for the Throwing Muses song from University.

"Clara Bow" -- The video from her band 50 Foot Wave's album Golden Ocean.

"Pneuma" -- The video from the Golden Ocean song. The video is really a bunch of blurs, but the audio is worth hearing to see how 50 Foot Wave differs from her solo work.

Other links:

Hersh's blog.

An NPR World Cafe interview in audio where Hersh also sings. The interviewer gets the name of her album "Learn to Sing Like a Star" wrong twice (he says "Learn to Sing Like the Stars" and "Learn to Sing Like a Girl" -- ack!), even as he's asking about the origin of the title, but Hersh is interesting to hear talk about her life and creative process.

--------------------

Last June, Liz Spikol at The Trouble with Spikol compiled a list of famous people with mental health issues. It's an interesting list of successful artists and actors that I'll probably mine for other Friday Music posts here in the future.

Slumgullion #47

2008-10-09T01:50:00.000-05:00

Michael Bérubé is back in action at his place:

I’m not going to rely on concepts like ‘intrinsic human worth,’ but I can try to learn a little from history. And let’s imagine that we might have learned—very slowly, very gradually, because as a species we’re really not very bright about such things—that every attempt to banish some humans from the category of rights-bearing beings, every attempt to lop off some members of the human family, has had vicious and catastrophic results. So let’s say that we’ve learned to err on the side of caution, and include every human born, just to avoid these past catastrophes.

Flea at One Good Thing presents a reader's email on autism and schooling.

The ADA Amendments Act was signed into law a couple of weeks back. You heard about it, right? No?

Wheelchair Dancer on "ElderSpeak, RaceSpeak, DisabilitySpeak":

Words have effects. Detrimental effects; they can transform you into someone else's negative image of you. True enough. I'd like to see this go fullscale. I'd like to see recognition of the power of language to create negative space in which others must live, must see themselves, and must accept if they are to gain access to some of the basic needs of everyday life. Why limit the discussion to just senior citizens? We know it is true for people of colour; I (and I suspect many of you) know exactly how this kind of language works for disabled people.

"Gallaudet's New Aesthetic of Openness" at the Washington Post:

Since its founding 144 years ago, Gallaudet's separation has been driven by the belief that the deaf were better off immersing themselves in their own culture. Their insularity is symbolized by the eight-foot-high fencing and thick stone walls that line the university's perimeter.
But the school intends to begin removing those barriers in part because of recruiting challenges and a younger generation that desires more integration into the broader world. The shift also reflects cultural changes and technological innovations that have made it more inviting for deaf people to navigate realms beyond their own, said Fred Weiner, the university's executive director for program development.

"When my parents grew up in the 1930s and 1940s, there were negative views of people with disabilities, and it drove the community inward," said Weiner, who is deaf. "What you see is a reversal. You have a more diverse America. You see technological advances. There are still challenges, but you have so much more access, and that's why students are saying they want to be part of it."

Disability and Freethinking, Part 2

2008-10-08T02:03:00.003-05:00

Ruth Geller at Humanist Network News writes about Harriet McBryde Johnson and her atheism. Check it out, and the discussion in comments of my last post on freethinking here.

A handy guide to your presidential candidates and their senatorial records on disability

2008-10-05T00:27:00.002-05:00

Provided by the Ohio Legal Rights Service. (Link leads to a chart showing the positions of both McCain and Obama on a wide variety of disability issues, both professed positions and voting records as of this September.)

An update for that chart: Tucked into the financial bailout bill that just became law is the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, listed in the above chart as the Paul Wellstone Mental Health and Addiction Equity Act that previously McCain had opposed and Obama had supported. As an add-on to the bailout bill, both candidates voted for it.

Heh.

Slumgullion #46

2008-10-04T01:28:00.005-05:00

A random collection of links, starting with blog posts on Palin and disability:

Sarahlynn at Yeah, But Houdini Didn't have These Hips wraps up her assessment on the veep and presidential candidates' stances on disability with a look at Sarah Palin's actions on disability issues (as opposed to her convention declaration of a "friend ... in the White House"). See her posts on Obama, Biden and McCain. Also, her initial reactions to Palin's nomination as McCain's running mate.

In a "Memo to Governor Palin," Penny at Disability Studies, Temple U. responded to Palin's RNC speech, and she includes a link round-up of other disability bloggers on Palin's statement that her having an infant with Down Syndrome gives parents of special needs children "a friend and advocate in the White House."

More on Palin's RNC speech from early September at Shakesville: Shapeling and Shaker Sweet Machine write on "Disability, Parental Martyrdom, and Reproductive Choice."

At Feministing, drahill writes: "Undecided: Sarah Palin, Disability Rights, and Abortion."

In a guest commentary at Patricia Bauer's disability blog, Paul K. Longmore also responds to Palin's announcement by writing on What Kind of Advocacy Do Americans with Disabilities Really Need?"

By the way, since she took point on bringing publicity to the ableist humor in the summer comedy Tropic Thunder, Patricia E. Bauer's News & Commentary on Disability Issues has become a must-read for me. She's always thoroughly covered the latest news, but comments have become especially lively as well.

Back to Shakesville, where Melissa McEwan recently requested:

I just wanted to take a moment to ask that we all please refrain from using the term "McLame" in comments. It's ableist, and therefore violates the tenets of the safe space.

I know I set a terrible example, because I once used it myself, but it was pointed out to me that I was being an asshole, so I don't use it anymore, and I'm sorry that I did.

My comments on that:

YAY! Yay to working for ableist-free safe space. Seriously.

Also, though he'll never label himself so, McCain is a candidate with significant disabilities, so referring to him as "McLame" does matter. It's not just rhetorical play.

Disability and Freethinking

2008-09-25T22:52:00.003-05:00

I received an email query recently from the Editor Ruth Geller of the Humanist Network News about individuals with disabilities who are non-religious, either agnostic or atheist. Geller hopes to do an article on the topic.

The topic intrigues me too. Disabled freethinkers? There's Harriet McBryde Johnson, of course.

I'm agnostic, as I've said before, though not without a yearning for something more satisfying than saying that I find faith an unpersuasive belief or emotion. Truthfully, I'm not in the same league of freethinkers as people who declare themselves atheists -- I just haven't put the time and effort into examining the issue that I have into, say, disability issues. (Or Things That Crack Me Up.) I feel comfortable calling myself a disability activist and a feminist because I've actively explored both topics and feel reasonably well-read there. Not so with faith, rationalism and belief, yet.

What about you? If you're disabled and consider yourself a freethinker, Geller is interested in talking to you. Contact info here:

Ruth N. Geller, Editor
Humanist Network News

Email: RGeller@humaniststudies.org
------------------------------
(tel): 518.432.7820 x210
(fax): 518.432.7821
-------------------------------------
The Institute for Humanist Studies
48 Howard Street
Albany, New York 12207
-------------------------------------
Web site: www.HumanistStudies.org
E-zine: www.HumanistStudies.org/enews/
Podcast: www.HumanistStudies.org/podcast/
Myspace: www.myspace.com/humaniststudies

Or, can you name other atheist or agnostic disabled folks besides McBryde Johnson? Historic figures or contemporaries? (Penny?)

If you're as intrigued by the question as I am, and the general topic of religious beliefs of disabled people, you might also check last May's Disability Blog Carnival on Spirituality and Disability at Ryn Tales.

Save Bitch Magazine

2008-09-18T12:13:00.000-05:00

Bitch Magazine, one of my favorite magazines, is in desperate need of a little financial help in order to keep publishing "the feminist response to pop culture" they do so well. If you're a supporter, now is the time they need your help. If you're curious what they're all about, subscribe or order a back issue or two.

I'd describe Bitch as disability-friendly, occasionally offering articles from a disability perspective and open to more, if their submissions page is any indication. Future issues will be built around themes of these words: "Buzz," "Consumed", "Art/See", and "Old." Keywords suggested to flesh out those theme words include "pharmacy", "disease and economy", "vision and blindness", and "aging, history and marginalization".

I donated just a few bucks. If you have a few to spare, I believe it's a very worthy publication.

Mid-September Already....

2008-09-18T00:13:00.006-05:00

I'm here. And doing well, thank you for thinking of me, those who have emailed me in concern. I've gotten out of the habit of writing out my opinions here, and while I hope to get back to it again fully, it seems I can't be relied upon to post regularly until, well, until I do start posting regularly.

I've had good family stuff going on: Last weekend was my parents' 50th wedding anniversary. (Wow, right?) This weekend is a baby shower for the newest member of my extended family -- welcome to the clan, Merrie!

There's big disability rights activity going on in Washington, D.C. just now, didja know? ADAPT has set up camp at HUD, the federal Department for Housing and Urban Development, to bring attention to the Community Choice Act and the need for low-income housing options for disabled Americans. At least 50 ADAPTers have been arrested in peaceful protesting thus far. Why go to the trouble of getting arrested? Because they can and because they are fighting for disabled people stuck in nursing homes with no accessible, affordable alternatives.

I will be back to talk more about ADAPT. And Palin, and landmines (literal, actual landmines, not the topic of Palin and her disability advocacy credentials). In the meantime, you can keep up with ADAPT here at their website.

Yes, it's exactly like Sophie's Choice

2008-08-07T02:42:00.006-05:00

From Inside Higher Ed, here's the story of a seven-year-old ADA case against Louisiana's McNeese State University for failure to make the student union accessible to the disabled. In 2001, a student using a wheelchair injured herself while trying to pry open a restroom door. (For those unfamiliar with this particular access dilemma, imagine sitting in a chair that rolls while trying to open a heavy door towards yourself and hold it open while you pull yourself through, all in a usually very confined space.)

The noteworthy aspects of this specific case are 1) that the university president has stated that access to the student union -- where the school newspaper, yearbook, student government offices and the two major cafeterias on campus are located -- was not a high priority, and 2) that the school's legal team is arguing that the plaintiff, a former student with epilepsy who was recovering from several surgeries to a knee at the time of her restroom injury, was not completely incapable of walking and thus had no business using the wheelchair in the inaccessible restroom.

From the article:

In a 2007 summary judgment, a Louisiana district court ruled that McNeese had failed to meet its obligations under the federal disabilities law. The act required that the Old Ranch [nickname for the union] be equipped with an accessible bathroom because the building had been renovated after 1990, the court found.

McNeese is now appealing the judgment, arguing that [the plaintiff, Collette] Covington — who didn’t absolutely need a wheelchair, according to McNeese officials — isn’t entitled to coverage under federal law. Covington had started using the wheelchair about a week before the accident, not because she couldn’t walk, but because she wanted to get around campus “at a faster pace,” according to statements attributed to Covington in court documents.

“It is reasonable to assume, then, that Covington could have stepped out of her wheelchair temporarily in order to use the restroom,” McNeese’s lawyer wrote in an appellate brief.

Also noteworthy is that the author of the linked article on the case describes the university president's position as follows:

Under the harshest interpretation, Hebert’s words could mean that he simply doesn’t view giving disabled students an “education” as a “high priority.” In the broader context of his deposition, however, Hebert noted that McNeese was confronted with something of a Sophie’s Choice. Forced to choose between making classrooms accessible and making the union accessible, he said, McNeese chose the classrooms. Whether McNeese lacked the funds to do both, however, is disputed in the lawsuit.

Because deciding how to use public funds for a public facility is exactly like choosing which of your children to let the Nazi's kill.

The good news is this: As I post this, comments below the article are 100 percent positive and supportive of the ADA and following the law to provide disabled access, including this comment by Jane Jarrow, president of Disability Access Information and Support:

From the article, it appears that both Covington’s lawyer and InsideHigherEd missed the obvious in this case. The ADA was passed in 1990, but the Rehabilitation Act of 1973 (with it’s Section 504 regulations) was implemented in 1977. While the Rehab Act had somewhat less stringent requirements for architectural access than does the ADA, basic access to restrooms has always been... basic! McNeese State, as a public institution has had more than 30 years to respond appropriately to federal mandates for equal access for persons with disabilities. Moreover, it appears that McNeese has resorted to an Appeal to Spite in its denial of wrongdoing. Covington asserted that she was injured because the bathroom door was not in compliance with access requirements. McNeese responds that because Covington didn’t NEED to be in a wheelchair (an “iffy” assertion, at best), the fact that they failed to meet their 30+ year responsibility for access shouldn’t matter. Huh? Meantime, InsideHigherEd also seems to need a refresher course on disability law. The article states that, “The ADA, which applies some of its most stringent rules to public universities...” There is simply no basis for this bald statement unless the suggestion is that the Title II regulations (which apply to public entities of all kinds, including colleges and universities) are among the “most stringent rules” of the ADA. If that were the intent of the comment, it still misses the mark, as the requirements for architectural access (ADAAG) under discussion in this case appear in Title III of the ADA. While the letter of the law for both the ADA and Section 504 focuses on legal requirements for *access* to programs and facilities, the spirit of the law has always suggested that indepence, safety, and dignity are important issues in assessing how well those legal mandates for access are met. It would appear that McNeese State has lost sight of all three.

That's something, right?

Slumgullion #45

2008-08-03T23:33:00.004-05:00

Yeah, I'm still here. I got new eyeglasses this weekend, and while it may take a few days to adjust to the bifocals (!) I hope to be spending less time squinting and more time online again.

In the meantime, this is the news I'm catching up on today:

"What happens when chronically ill kids grow up?" -- A June article in the Houston Press explains the gap in health care for disabled children who come of age. It's an important topic I haven't seen covered in such depth before, but, hello... the "first large generation of chronically ill pediatric patients to reach adulthood"? I'll be 40 in October, and I'm really tired of hearing how all the seriously disabled children before now died before needing adult health care. We're here. We've been here. A number of us have even been blogging online for quite some time. It's just that we're mostly invisible to the mainstream media.

"Girls parents and agency face charges in starvation" -- Danieal Kelly of Philadelphia was 14. She died in 2006 and the charges have just now been filed. Mark at The 19th Floor writes about Danieal and the grand jury indictment (pdf file with one very graphic photo) of nine people for her needless suffering and death.

"Immigrants facing deportation by U.S. hospitals" -- From a NYT series on how the government and others "compel illegal immigrants to leave the United States." Here's an excerpt:

Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.
What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it. . . .
Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.
American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.
Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.
“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

"Taking the long way around" -- From Oceanside, California, an example of how higher gas prices and budget cuts that have led to more crowded public transit is pushing wheelchair users off the bus. We'll be hearing more stories like this, I suspect.

"Her new role is fighting old label" -- Ms. Wheelchair America is interviewed by the Houston Chronicle. Beauty contests for disabled women have been covered here before, but I do like the approach to her new job that the current Ms. Wheelchair America, Michelle Colvard, seems to be taking. She says:

They're two main ways that the media portray women who have disabilities. It's either kind of passive, needing help, victim, suffering. You hear a lot of those words, wheelchair-bound, these negative-word connotations. ... On the other hand, women with disabilities who have done pretty well for themselves are put up on a pedestal. I think sometimes that's a bad thing, too.

Minnesota Spring

2008-06-19T21:35:00.010-05:00

A bunch of photos, unrelated to disability except in the "stay in your house!" sense:

The first four were taken at the Minnesota Landscape Arboretum the first week in June. The last photo was taken yesterday in my front yard.

Image description: My favorite easy-access spot at the arboretum is on this wooden bridge over a gurgling brook. Sit facing south and looking over the right side and the water trails away amidst big boulders while the crabapple blooms overhead. Lush, green, shady.

Image description: Look down the other side of the walkway over the stream and the water runs a bit slower, pooling around smaller rocks that have bright green moss growing on them.

Image description: Evergreen branches heavy with lush fresh growth -- thick soft pine needles in bright green -- hang all around the stream's shaded walkway.

Image description: My twin and I (bet you still can't tell us apart) and, I think, St. Francis of Assisi amidst the blooming lilacs. We stand on a groomed lawn next to a bronze statue of a robed figure with a bird resting on an outstretched arm. Behind us is a low retaining wall, and just behind that a profusion of blooming lilac bushes in your basic shade of lilac. The parenthetical joke just above is that my twin weighs about 100 pounds more than I and walks and breathes without assistive equipment. Otherwise, we're identical -- not.

For Sara.

Image description: A tiny nest filled to capacity with baby birds. The nest is maybe three inches in diameter and lies just inside the top of an evergreen bush. Four open mouths wait for a responsible adult to bring eats. One bird, much bigger than the other three, did not come from a finch egg. He's an infant interloper. Everybody's very fragile and helpless and ugly.

Update: The baby birds didn't fare well. Two days after the photo was taken there were just three birds in the nest. Two days after that, just the one bigger baby, who seemed dead. I think the interloper crowded the others out and the parents then abandoned the nest. There's a bluejay nest in the oak tree out back that I'm also keeping an eye on. I can see it from my window as I type. All seems happier there.

RIP Harriet McBryde Johnson, 1957-2008

2008-06-04T18:21:00.015-05:00

Overwhelmingly sad news today: Harriet McBryde Johnson has died at age 50.

Image description: The photo shows Johnson in a flowered-print navy dress looking toward the camera. She sits in her wheelchair, though the image is a close-up focusing on her and not the chair. Johnson leans forward, right elbow on knee, chin in right hand. She's a middle-aged white woman with dark hair in a very long braid trailing over her shoulder and into her lap. She's not quite smiling, but looking interestedly back at you.

The Post and Courier of Charleston, SC, provides a preliminary notice, with a more formal obituary expected soon (the NYT will have something too, I hear):

Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.

"She worked yesterday. It's a shock to everybody," said friend and attorney Susan Dunn.

She was born July 8, 1957, and had been a Charleston resident since age 10.

She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live. . . .

Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to "the charity mentality" and "pity-based tactics" of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.

The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, "I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."

Some of Johnson's writings:

Unspeakable Conversations in The New York Times, February 16, 2003 -- The magazine cover story featuring her debate with Peter Singer on disability and personhood.

The Disability Gulag in the NYT, November 23, 2003 -- On escaping the institutionalization that threatens so many disabled people.

As New Mobility's Person of the Year in 2004, article by disability activist Mike Ervin

The Way We Live Now: Stairway to Justice in the NYT, May 30, 2004 -- On the U.S. Supreme Court ruling on Tennessee v. Lane.

Overlooked in the Shadows in the Washington Post, March 25, 2005 -- Harriet on Terri Schiavo. (Same article also published at Slate and in audio at NPR)

Too Late To Die Young: Nearly True Tales From a Life, her memoir, published in 2005. Reviewed by Ragged Edge, excerpted in AARP Magazine, and included in a roundup of memoirs by disabled women at Disability World.

Accidents of Nature, her youth fiction book about a sheltered 17-year old girl with cerebral palsy who attends a summer "Crip Camp" and confronts how her physical differences and the accompanying ableism affect her interactions in the world. She and a friend also confront the ableism itself.

Speaking on video about Medical Ethics at Insights TV for the United States Holocaust Memorial Museum. The first section at the link is "Perspectives on Antisemitism," with Harriet McBryde Johnson directly below as part of the "Medical Ethics" section. Clicking on the link by Harriet's photo and below the headline introducing her brings a pop-up window that includes a full transcript. Here's the direct link to that window and transcript.

Wheelchair Unbound in the NYT, April 23, 2006 -- Johnson writes about speaking at the U.S. Holocaust Memorial Museum.

Alas for Tiny Tim, He Became a Christmas Cliché in the NYT, December 25, 2006

A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon at disability activist Laura Hershey's site Crip Commentary

13 Questions at BBC's Ouch! on May 12, 2008

The Gimp Parade has an index label just for Johnson, and Barry has discussed her writing a number of times at Alas, A Blog.

More links posted as available.

Update: There are links to blog tributes in the comments below and at Alas, as well as this more complete (and more ableist in language) obit in the Charleston Post and Courier.

Friends of Johnson have created this website dedicated to her life and memory.

Cross-posted at Alas, A Blog

I feel sad, too, though unrelenting rage is more appropriate

2008-05-27T00:02:00.005-05:00

Many who blog about autism have written about Alex Barton, the Florida five-year-old, whose Kindergarten teacher led his classmates in voting him out of the class after she also had the students tell him, as he stood at the front of the class, what they didn't like about him. From a news report:

After each classmate was allowed to say what they didn't like about [Melissa] Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said. . . .
Barton said after the vote, Portillo asked Alex how he felt.
"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said. . . .
Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

Last Crazy Horn at Odd One Out is compiling a long, impressive list of posts on this news story as well as links to some resources responding to the topic.

Hiya gawkers!

2008-05-20T23:38:00.004-05:00

Yesterday I went to Great Clips to get my hair cut. The hairdresser I've had for the past year got a job at the local bank around Christmas, so I've been badly in need of a trim. But I was also very conscious that in the two years I've had a trach and used a vent I have never gone anywhere "cold" and required a non-medical person to, well, touch me.

Knowing how weird people can be about wheelchair users, I expected a wheelchair user with a trach and vent would make the experience even more of an adventure. I was so right. The level of gawking -- outright staring -- from people less than five feet from me far surpassed anything I've experienced in my 25 years of being visibly disabled.

People stare all the time, right? Three women, close enough for me to reach out and kick them, sat or stood with their jaws hanging down as they stared. And stared. For several very long minutes. It may have been much longer. I had to look away from the rudeness.

I've felt comfortable challenging that in the past, at the very least with a pointed look back, but this time I found myself unprepared and struck silent. I looked back and found absolutely no recognition that they were looking at fellow human being. They stared like I was an alien or three-headed dog. My nurse, a smart outspoken woman, was stunned into silence too.

Then I got busy with what I came there for and the calm business manner of the woman who shampooed and cut my hair. But I felt the Othering shame of those stares in a way I haven't for a couple decades. And here I thought I had this worked out. Damn.

Friday Music: The Blind Boys of Alabama

2008-05-09T01:03:00.004-05:00

The Blind Boys of Alabama are an old-school gospel group that's been singing and touring since 1939. Yeah, 1939. That's a lot of cultural and music business changes to weather over seven decades. Originally called the Happy Land Jubilee Singers, the five original singers (Jimmy Carter, the current lead singer, has been with the group since it began) met at the Alabama Institute for the Negro Blind in Talladega.

Clarence Fountain, another founding member, recalls the early years while the singers were still attending the institute: "The school was not happy for us to go off campus, but we would sneak out," Fountain told Folk Roots interviewer Dave Peabody. "We would go out and make some money. There was a big soldier camp up there,had about ten or twelve thousand soldiers. We'd perform for that soldier camp and we'd do alright."

On the band's name change, Fountain says, "For a while we called ourselves the Happy Land Singers and we toured all around the country. Then a promoter put us on a show with another blind group, the Jackson Harmonies from Mississippi. He billed it as a contest between the blind boys of Alabama and the blind boys of Mississippi. The name worked good so we stuck with it."

Known for remaining contemporary and collaborating with many mainstream artists while keeping their traditional gospel sensibilities, the Blind Boys have won four Grammy Awards and their most recent album, Down in New Orleans was released earlier this year.

People not apt to listen to gospel music might know the Blind Boys from their cover of the Tom Waits' song "Down in the Hole" that was the theme song for HBO's drama The Wire. (The show has used a variety of covers of the tune, with the Blind Boys' version used in season one.)

YouTube has a wonderful selection of video performances:

"Something Got A Hold On Me" -- a 1960s live performance
"Too Close" -- the same early-to-mid 1960s performance venue
"Look Where He Brought Me From" -- a live performance in a church, I think, maybe in the 1970s
some old-fashioned musical testifying at an outdoor concert or tent revival
"Run On" -- live 2001 performance on the British tv show Later
"Amazing Grace" -- their live version sung to the tune of "House of the Rising Sun," and here's a studio version someone has set to images of Black American history
"Satisfied Mind" -- Ben Harper & Blind Boys of Alabama performing live (There Will Be A Light, Harper's album with the Boys came out in 2004)
"Shall Not Walk Alone" -- with Ben Harper, video is of a recording studio performance
"Jesus Hits Like the Atom Bomb" -- the video is some cute, quirky animation (2005 album Atom Bomb)

Source

Slumgullion #44 -- Voter ID edition

2008-05-08T21:47:00.000-05:00

Here's a bunch o' links on the issue of voter identification, specifically photo ID, and how it impacts disabled people and other folks:

"Take This And Weep" -- Steve Kuusisto at Planet of the Blind comments on the U.S. Supreme Court's recent ruling allowing Indiana's requirement of photo ID for voters in that state.

"The (GOP's) War on Voting Right" -- Perry Dorrell at Brains and Eggs offers a collection of statistics on which Americans are most effected by photo ID requirements. (The League of Women Voters says up to 11% of Americans lack photo ID.)

"More of the Same" -- Mark Siegel at The 19th Floor notes that the story of a South African woman who was denied ID because she has no arms and local bureaucrats required her to submit fingerprints isn't dissimilar from his own experience five years ago here in Minnesota. In both cases, disabled people clearly weren't expected to ever show up and participate in their community as officials had given absolutely no thought to their existence.

"The Politics of Mobility" -- Ruth Harrigan at A Different Light relates the recent story of the elderly nuns in Indiana who were turned away from the polls for lack of proper ID to lack of mobility for many different Americans.

"Is the Supreme Court trying to swing the election?" -- Bob Fitrakis and Harvey Wasserman at AlterNet write about how the ruling on Indiana's photo ID requirement disenfranchises mostly Democratic voters.

"Was Justice Stevens' Water Spiked?" -- Archcrone at The Crone Speaks wonders what the hell Supreme Court Justice John Paul Stevens was thinking when he joined the majority in the vote.

"Voter ID law disenfranchises Americans" -- Mai Thor writing for the Minnesota Daily also summarizes the impact of the Supreme Court ruling.

Got another link about photo ID and voting? Share it in the comments.

And here's an important new(ish) link to check out:

Crimes Against People With Disabilities is a new blog designed to document and catalog the crimes often considered unrelated to disability prejudice and ableism. It joins the recent UK Disability Now magazine Hate Crime Dossier in an effort to connect the stories of abuse and death to show the larger picture of hate crime against the disabled.

Things that crack me up #39

2008-05-07T23:27:00.008-05:00

Cilla at Big Noise cracks me up. After my last published edition of what afflicts me with the chuckles, Penny at Disability Studies posted a similar example of restroom signage discrimination where disabled guy is denied clothes. So, Cilla created this Wheelchair Cowgirl for me. Take that half-naked nondisabled Hawaiian guy and Knott's Berry Farm Cowboy Dude!

Image description: Cilla's artwork takes disabled guy, the basic universal disability access symbol, and gives him a cowboy hat, sheriff's star pinned to his chest, fringed chaps (showing the fringes on the underside of his thighs), kickass cowboy boots with spurs, and a lasso swinging in the air from his arm. She's beautiful. Thanks, Cilla!

Check out the 37th edition of the Disability Blog Carnival

2008-05-07T22:47:00.007-05:00

Did you know that Dorothea Lange, famed Depression-era photographer, had polio and that her experience with disability informed her work?

Ms. CripChick presents the latest Disability Blog Carnival on Disability Culture and Identity: "Here They Come!"

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”
—Dorothea Lange on disability

Over 40 bloggers weigh in on how the shared history, struggle, and culture of disability inform personal and group identity. This is an impressive collection of varied explanations on how what is viewed as a deficit by mainstream culture can be a binding force and a cause for celebration. Go and read.

Image description: The icon above, provided by CripChick, is a color image of a self-portrait by Frida Kahlo with the words "DISABILITY BLOG CARNIVAL" in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting "Self-Portrait with Portrait of Dr. Farill" described in detail in both English and Spanish here.

Cross-posted at Alas, A Blog

Happy Cinco de Mayo

2008-05-05T16:12:00.003-05:00

Apparently, "wheelchair guy" in Mexico is more interesting than his relative to the north.

Image description: Two identical simply-stenciled images in bright red paint on a wall. The universal wheelchair access guy holds a gun (rifle, machine gun?) in an upraised hand as he sits inside a five-pointed star. Posted at Flickr by rsinghabout, the image is indexed under "San Cristobal," "Chiapas," "Mexico," "2007."

Image description: On the slope where a sidewalk ramps leads into a street in Mexico City, Mexico, a variation of universal wheelchair access guy is stenciled in black over yellow paint. This guy faces left instead of right and has a very large round head. Posted on Flickr by daquella manera.

Image description: On a large post painted green a round white stencil graffiti painting. The background of the image is white and the wheelchair guy is the color of the green post. He's a completely stylized version of the universal symbol, facing left. He has a very large oblong head with giant eyes, like an alien or maybe a Day of the Dead skeleton. He doesn't appear to have legs but his torso looks a little like ribs, though that may be a function of the illustration since the chair cushion, the chair's arm and the guy's body are all the same color green and each is cleverly articulated despite he drawing's simplicity. The manual chair looks light and speedy. Posted on Flickr by ultraclay!

Things that crack me up #38

2008-05-05T00:51:00.003-05:00

Which is more disturbing? That the disabled wheelchair symbol guy is naked or that the nondisabled stick figure guy is not wearing pants?

Image description: A color photo of restroom signage in the Honolulu, Hawaii, airport, posted on Flickr by Wha'ppen. On a black or dark brown background two white stick figures for the mens' restroom: The universal access wheelchair guy, looking like he always does in simple white outline, sits next to the mostly universal stick figure symbol for the mens' restroom -- a nondisabled standing guy in simple white outline. Except the nondisabled guy is wearing a very festive Hawaiian shirt , yellow with red flowers. The effect of the colorful shirt on the otherwise white figure is that he appears to be wearing only a shirt. Disabled guy doesn't get a shirt.

Culture, chaos theory and choice

2008-05-04T05:12:00.002-05:00

So, in my BADD post the other day, I explicitly noted the evil of our U.S. foreign policy in Iraq -- our war that, among other things, disables Iraqi children, many of whom will live their lives in a society with such a damaged infrastructure that their basic needs will never (not for one day) be well met. I know that some people trying to understand disability culture and the idea of impairments as not inherently tragic will be further confused by this. (No, being disabled is not a tragedy, yes, being disabled by an occupying army is an outrage and tragedy.)

The current discussion in comments at Alas, A Blog, started by WheelchairDancer's wonderful post "On Making Argument: Disability and Language" (also with a separate comment trajectory at her personal blog) struggles with this, or with several readers' inability to mesh together the ideas that while being or becoming disabled is not a choice, it is experienced by many people as normal or even filled with various human joys.

The confusion persists, I think, because disability is seen as this separate thing that happens, not as part of the whole spectrum of possible valid and ordinary life experiences. Maybe the breadth of what disability includes causes part of the confusion: we are the person born with spina bifida and the old fart losing his hearing, we are the person born to quadriplegia in a car crash and the cancer survivor who lost a limb while winning the battle, we're the child born with Down Syndrome and the dyslexic movie star, we're the institutionalized schizophrenic and the woman taking anti-depressants to keep moving through her busy day.

Pitting one life experience against another is ludicrous and unfair, of course, but in those comparisons I just made, the first examples are routinely seen as tragic and the second ones are all sometimes -- for better or worse -- seen as either common and ordinary or as triumphs of luck, strength and will. Neither characterization sums up the individual life or experience with disability. With adequate and just support, any disabled individual might lead an utterly ordinary life where his impairments are only one aspect of who he is. Or it might be the very thing that completely defines him. It might inspire him to amazing heights or leave him paralyzed with bitterness. (Yeah, note the metaphor there. Discuss, again, if you like.) People are different like that.

Two people can have the same job, with one hating it miserably and the other blithely content. Neighbors living side-by-side for sixty years can lead incredibly different lives. All life, but maybe especially disability, is chaos theory in action. Any outcome might be true.

The thing that makes the war in Iraq and the children it disables an outrage and tragedy is the degree of human choice. Someone somewhere (or many someones) makes a decision, and it leads to this event causing pain to other people. To value freedom and the individual means to value and support choice wherever possible and to be against human actions that limit freedom and choice of others. I don't find that contradictory to also embracing the disability experience as one that is in many ways fulfilling for many of us, even though few of us got here by choice and some of us have been injured at the hands of others.

The Most Important Disability Policy

2008-05-03T00:33:00.011-05:00

I had a hard time choosing one topic for this year's BADD. There's the presidential candidates' disability policies, McCain's refusal to even listen to the concerns of disabled Americans worried about institutionalization, funding cutbacks sure to threaten the mobility and health of disabled Americans (and all Americans) even more in the future.

A judge in Kentucky recently found a man named Ohmer Portwood guilty of breaking the pedestrian code for driving his wheelchair in the road, even though Portwood reportedly has nowhere else to be because of a lack of safe and accessible sidewalks. The judge declared that the city of Lancaster's failure to comply with the ADA was a separate issue.

Pharmaceutical companies lie for profit, children are given shock therapy, returning military vets are discharged without adequate health care.

And yet, the greatest example of disablism at work in the world today is this immoral war in Iraq that terrifies, maims, and kills while also destroying the existing social structure of supports that could help manage the everyday needs of Iraqi citizens. Maybe it sounds like a stretch to call civilian war casualties disablism in action, but what is disableist policy if not a policy that holds the lives, bodies and minds of others so cheaply?

What follows are 20 photos, mostly of Iraqi children.* Some are very hard to look at -- consider this a trigger warning. I've added my usual image descriptions for accessibility for all but they are limited to descriptions of what I see and lack specifics of time and place. Feel free to comment if you see something different in the images.

Image description: A young girl -- no more than three-years-old -- is in the foreground being carried by an adult. In the background, behind other people, are black trails of clouds from something burning. The girl is frightened and crying.

Image description: Under a sky blackened by sooty clouds, a tank follows a family that flees. A man and three children all hold hands as they move toward the camera. The background appears to be all desert. They carry nothing with them.

Image description: A close-up of a young girl facing the camera, her eyes brimming and wet with tears. In the background a military tank comes down the street.

Image description: A boy and girl, both perhaps age five, stand before a man in full military gear who runs a metal-detecting wand in front of the girl's chest. She stands with arms outstretched so the man can sweep her for explosives.

Image description: In the foreground, the torso of a man standing in full military gear and carrying a machine gun. In the background a child, perhaps four-years-old, sits, with both hands raised to cover her face.

Image description: A young girl (maybe six?) sits cross-legged, arms wrapped to hug herself and cries, open-mouthed. A cinder block wall next to her is spattered with blood and just in front of her an adult lies in the grass, with only his feet and calves visible in the photo.

Image description: A girl, maybe eight-years-old, sits cross-legged on a cushion, crying in anguish (and perhaps, pain) as she faces the camera. Her face and neck are spattered with blood, and the front of her pink shirt is wet with blood, as well.

Image description: A bearded man sits on a bed's bare mattress wearing only an undershirt and shorts. His feet are bare and dirty. He cradles a small child in his arms. The child appears to be unconscious and wears only an olive t-shirt and a white bandage over the top half of his head, with blood soaking through at the top.

Image description: A toddler lies on his back on a bed, his right arm covered in heavy white bandages and his shirt pulled up to reveal another bandage on his chest. He is crying.

Image description: A pretty girl (maybe eight?) lies on her side looking solemnly to the camera. The hand of her arm that lies along the pillow before her face is heavily bandaged.

Image description: A girl, perhaps ten-years-old, lies stretched on a gurney. One hand is bandaged and the other holds a child's drawing. Her bare legs show serious, deep wounds, with about half of both her right knee and left ankle missing as if very large bites of flesh were taken from each.

Image description: A child of three or four lies sleeping on her side, face nestled against the hip of an adult. Her left knee and foot are lightly bandaged, and the right leg is heavily bandaged from the top down to where it ends above the ankle.

Image description: A young boy lies, half-unconscious, with a bandage over his nose possibly holding a naso-gastric tube in place. His entire torso is covered in heavy bandages. In the background a woman sits keeping vigil.

Image description: A boy lays on a bare mattress, on his stomach but resting his upper body on his elbows. The white clothes he wears are all stained with blood, as are his hair, face and legs. He stares pensively off-camera.

Image description: A man in Arab dress carries an unconscious girl past a jumble of bodies in the background. The girl's clothes are torn and a grotesque jumble of flesh and bone hangs where her right foot should be.

Image description: A man carries a girl in a school uniform across a courtyard. She is crying and blood runs across her face, down her bare legs and across her sandals.

Image description: A close-up of a girl's face as she stares blankly toward the camera. While her eyes appear undamaged, the skin of her forehead, nose and cheeks is badly damaged, perhaps burned.

Image description: Two women, one in a white medical coat and the other an older woman in Arab dress, stand over a toddler laying on a table crying. Heavy bandages cover the child's torso and crotch. The child's left leg is entirely missing.

Image description: A boy lies in a bed on his back. His heavily-bandaged left forearm is raised to rest across his forehead. His right arm ends a few inches below the elbow with the bare stump in the foreground. His torso is a mass of stitches and bandages, with a chest tube adhering to his right abdomen.

Image description: A boy lies in bed on a colorful blanket, conscious and trying hard not to cry as a hand wipes his cheek. A bandage is wrapped around his forehead. Both of his arms are almost completely missing, with the stumps in white bandages. His chest and abdomen are covered in what seems like a white paste, though the black burned skin is clearly visible beneath the salve.

*Given that these photos were mined from the internet, it's certainly possible they are not all of children in Iraq under the current occupation. But I found them on sites that presented them as such, and they are, if nothing else, all photos of children living under violent circumstances, many in the clear presence of military occupation that leads to their great injury and harm. My BADD post is late because I was trying to find mainstream media news sources for these photos that might include photo credit and caption info. That's proven difficult but I'll happily accept any info on any of these photos' origins that anyone might have.While these photos were at various sites, they were also grouped together at a site called Children of Iraq, where dozens of similar ones can be seen.

Girlcott of Seal Press

2008-04-25T00:59:00.003-05:00

I've always intended to go back and review one of my favorite disability autobiographies, Connie Panzarino's The Me in The Mirror, which I read back when I was a teenager. But, you know what? It's published by Seal Press, a company that I cannot support or endorse at this time. Not even for Connie Panzarino, who was an amazing white, queer, disabled woman. I haven't found a good online reference on Connie that doesn't reference and quote the book, so I'm just not going to say that much more about her right now.

Someday I hope Seal Press sets this right and I can talk about an interesting book and an empowering woman. Connie Panzarino, that is.

Friday Music: Chavela Vargas

2008-04-25T00:09:00.004-05:00

April 17, last week, was the 89th birthday of Chavela Vargas, the legendary Mexican-Costa Rican singer. My friend Penny Richards of Disability Studies, Temple U. moderates a mainly read-only Yahoo group, Born on this Date, that features one important woman in history each day. Here's what she wrote about Vargas:

"Una mujer tiene muchas vidas que vivir. Para hacer muchas cosas y romper parámetros como yo he hecho, hay que ser muy mujer. Después dirá."

[A woman has many lives to live. In order to do so many things and break so many limits, as I have done, one has to be very much a woman. At the end it will be told.]

--Chavela Vargas

Today on our homepage: Mexican-Costa Rican singer Chavela Vargas, born Isabel Vargas Lizano on this date in 1919, in San Joaquín de Flores, Costa Rica. She remembers having polio and being blind during her childhood, but says that she was cured by shamans. She left Costa Rica at age 14, and there she sang rancheras (folk songs) on the streets to earn her living for years. She wore a red poncho and smoked cigars, carried a gun and dressed as a man, to protect herself in such a visible and vulnerable life. She acquired a limp as a young woman--she says she jumped out of a window after disappointment in love.

In time, she became a popular cabaret singer in Mexico, touring the US and Europe, a favorite with the likes of Frida Kahlo (with whom she had an affair, she says) and Diego Rivera. Her stage shows were frank in their sexuality--she dressed in dashing men's clothing and sang songs of seduction to the women in the audience. In 1961, at the age of 42, the first recording of her music was released, Noche de Bohemia. She retired for health reasons in the 1970s, only to return to performing in 1991.

She released an autobiography, Y si quieres saber de mi pasado (And if you want to know my story...) in 2002. In it, she recounted a 15-year bout with alcoholism in the 1960s and 1970s. In 2003, she appeared at Carnegie Hall in New York, in a show introduced by Salma Hayek and promoted by Spanish film director Pedro Almodóvar, a friend. She has appeared in several of Almodóvar's films, and also in the recent biographical film Frida; she also appeared on the soundtrack of that film. She recently appeared in the film Babel, again as a singer.

She was awarded Spain's Great Cross of Isabela la Católica in 2000.

Today is Chavela Vargas's 89th birthday. She lives in Veracruz, Mexico.

She's on YouTube, here are just a few of the many clips there:

http://www.youtube.com/watch?v=duVaGM_JsME (a 2006 live performance)
http://www.youtube.com/watch?v=yQnNY8zMihs (a recent live performance)
http://www.youtube.com/watch?v=yuVjT2Rl7Bg (a 1998 performance for Spanish TV)
http://www.youtube.com/watch?v=0gQ31m4Yt0s (clip from "Frida")
http://www.youtube.com/watch?v=3bBRp-co68I (audio only)
http://www.youtube.com/watch?v=gqHh2U4TSJQ (audio only)
http://www.youtube.com/watch?v=XGESStAwS1k (slide show accompanies audio)
http://www.youtube.com/watch?v=cF6jEclOMcw (slide show accompanies audio)
http://www.youtube.com/watch?v=-mnZcErj-SA (slide show accompanies audio)
http://www.youtube.com/watch?v=6D2e8JMsTho (slide show accompanies audio)
http://www.youtube.com/watch?v=XAIF1IgiLeo (slide show accompanies audio of duet)

http://es.wikipedia.org/wiki/Chavela_Vargas
http://en.wikipedia.org/wiki/Chavela_Vargas
http://www.allmusic.com/cg/amg.dll?p=amg&sql=11:br63mps39f8o
http://www.afterellen.com/archive/ellen/People/2005/1/chavelavargas.html
http://www.afterellen.com/archive/ellen/People/2005/1/chavelavargas2.html

http://www.glbtq.com/arts/vargas_c.html

See also:

Yvonne Yarbo-Bejarano, "Crossing the Border with Chabela Vargas: Chicana Femme's Tribute," in Sex and Sexuality in Latin America (NYU Press 1997). A shortened version is online here:
http://www.lolapress.org/artenglish/chabe13.htm

Happy belated birthday, Chavela!

For another fan of Chavela's, Brownfemipower, whom I miss very much.

Check out Disability Blog Carnival #36

2008-04-24T16:42:00.006-05:00

The latest Disability Blog Carnival is now up at Abnormal Diversity where the theme is Abuse. I submitted a post on something that happened to me about two years ago, and there's much more to read on the topic. Check it out.

The next Disability Blog Carnival will be on May 8 at CripChick's. The theme will be Disability Identity and Culture. From CripChick:

Here are some topic ideas!:
• What is disability identity? If you are disabled, do you feel disability is a part of you and your experience?
• What is disability culture to you? How do you put it out there or live it every day?
• Does disability intersect with your other identities (i.e. queer person, person of color, person of faith, etc.)?
• Is pride, community, or the Disability Rights Movement important to you? Why or why not?
• How do you feel about the word disabled? Is it a political term with power to you or do you despise it?
• Do you see disability outside of a rights framework (i.e. is disability something that is more than advocacy to you?)
• If you identify with the autistic acceptance movement, the deaf community, or other groups, how do you feel about disability? Many people do not want to associate with the disability community— how do you feel about this?
• Have you felt alienated [left out] from the disability community because of racism, exclusion because of your disability, the media or other factors? How has this affected your identity as a disabled person?

And some topic ideas for allies:
• Why is disability important to your work or politics?
• How do you feel about the Disability Rights Movement and what would you say to activists who downplay this movement or even disability as an important social justice issue?
• How do you see disability intersecting with feminism, reproductive justice [movement that focuses on ALL people having ALL control of their bodies], and other movements that work to end oppression?
• What do you see in your role as an ally?

CripChick also provides a list of resources for anyone wanting to bone up on the topic before participating. Deadline for submissions is May 4. The carnival submission form is available here, or leave a comment with your submission's link at CripChick's, or email her with the info at consciouslycrip [at] gmail [dot] com.

Other recent Disability Blog Carnivals have been at Reimer Reason on the theme of The Hardest Part, Andrea's Buzzing About on Breaking Out, Wheelie Catholic on Appreciating Allies, and Sunny Dreamer on Standing Outside the Fire.

Image description: The icon above, provided by CripChick for the upcoming carnival at her place is a color image of a self-portrait by Frida Kahlo with the words "DISABILITY BLOG CARNIVAL" in bold black type across the painting. The image is a close-up of Frida in her wheelchair from the 1951 painting "Self-Portrait with Portrait of Dr. Farill" described in detail in both English and Spanish here.

Cross-posted at Alas, A Blog

Participate in the 3rd Annual Blogging Against Disablism Day, May 1, 2008

2008-04-22T23:07:00.001-05:00

It's time to be BADD!

Once again, the amazing Goldfish is sponsoring Blogging Against Disablism Day on May 1st. BADD is an annual event where disabled and non-disabled bloggers everywhere write about ableism, disablism and disability prejudice and discrimination.

Last year over 170 bloggers contributed. I've been proud to be a part of this the past two years and I can't wait to see what everyone has to say this year.

Details on how to participate are at Diary of a Goldfish, including a notice of Language Amnesty. Goldfish explains:

You can write on any subject, specific or general, personal, social or political. In the previous two BADDs, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism and sexism.

It's a good chance for allies to get their feet wet on a topic they might be hesitant to address, I think. Hope to see you there.

(Image description: The above logo for Blogging Against Disablism Day is one of several available --easy copy-and-paste code -- at Goldfish's. This one is a square divided into a headline naming the event and a grid of 20 colorful boxes, each featuring the simple shadow of a person, with one box showing a person using a wheelchair and one other person holding a cane.)