Poetry: Cheryl Marie Wade

I Am Not One Of The
by Cheryl Marie Wade

I am not one of the physically challenged-
I'm a sock in the eye with gnarled fist
I'm a French kiss with cleft tongue
I'm orthopedic shoes sewn on a last of your fears
I am not one of the differently abled-
I'm an epitaph for a million imperfect babies left untreated
I'm an ikon carved from bones in a mass grave at Tiergarten, Germany
I'm withered legs hidden with a blanket
I am not one of the able disabled-
I'm a black panther with green eyes and scars like a picket fence
I'm pink lace panties teasing a stub of milk white thigh
I'm the Evil Eye
I'm the first cell divided
I'm mud that talks
I'm Eve I'm Kali
I'm The Mountain That Never Moves
I've been forever I'll be here forever
I'm the Gimp
I'm the Cripple
I'm the Crazy Lady
I'm The Woman With Juice

Disability Blog Carnival #13 at Ballastexistenz

Yeah, I may be posting this a little early. But I expect the carnival will be up at Amanda Bagg's blog Ballastexistenz sometime today and I'm excited to see it. The theme is "What Box?" and I already know Trinity and Steve Kuusisto have written great posts on that theme.

At left is my attempt at a carnival logo that isn't about physical impairments, and shows that the carnival is inclusive of cognitive, developmental and psychological issues. I hope it works for all, or that someone can produce something better.

While Goldfish's Blogging Against Disablism Day is May 1, I'm hosting the next carnival right here on Thursday, May 10. Submission deadline will be midnight on the Monday before. The theme is "Firsts" and I want that to be interpreted as widely and variedly as possible. I want to encourage nondisabled bloggers and those that feel they don't qualify to be part of the disability community to participate as allies. I'll answer any questions about the theme, but it's just a jumping off point. Oh, and if you find a great post of someone else's that should be in the carnival nominate it too.

Update: I forgot to include a visual description of the logo above, and there's been some curiosity as to what the brain diagram words say in the logo, which I briefly explained at David's blog:

I got the image by Googling "brain diagram" under the Images search option and currently it can be found on the second page of that search. The URL for the image is: www.miniscience.com/projects/ModelBrain/Brain_diagram_1.jpg

.... Basically, the diagram sections off the frontal, prefrontal, parietal, etc. areas of the brain in seven bright colors and labels them "frontal", "prefrontal", "parietal", etc.

And a more thorough visual description:

It's a line drawing of a human brain from the left side, with the sections of the brain shown in different bright colors. The prefrontal area is labeled "prefrontal area" and is the forehead area in purple. The inner most part of that region is labeled "Broca's area (in left hemisphere)". Above that, the front top "frontal area" region of the head is bright blue and an interior part of that is labeled "frontal eye field". A sort of vertical slice at the top of the head down into the center of the brain is shaded a brighter blue, and a bright red just behind that. These two sections are labeled "sensorimotor area". The top back of the head is colored a dark pink and labeled "parietal lobe". The back area is colored orange and has the labels "visual area" and, more specifically, "visual association". The lower portion of this orange section is on or behind the brain stem and is drawn with a texture change. The brain stem itself and the deep interior region of the brain is colored yellow and the part above the stem bears the labels "temporal lobe", "auditory", and "auditory association (including Wernicke's area, in left hemisphere)".

The logo as a whole: The brain is in the center on a white background with the words "Disability Blog" above the brain, and "Carnival" just below in bold black.

Also, this was a logo I created for the Disability Blog Carnival, and it's the fifth such logo. The others, some created by Penny, are here, here, here, and here. Anyone can use any one of these or create a new one for a blog entry or sidebar link to the carnivals.

Poetry: Lynn Emanuel

Tourists
by Lynn Emanuel

In Tunis we try to discuss divorce
And dying but give up to lounge

With rug merchants under a plum tree.
From its corner the lamb’s severed head

Watches the flies drink from its eyes
And its fat disappear into the fire.

The light rinses the edge of your sandal,
The two wasps that ornament the blur

Of screened window. My grandmother
Would have loved a night like this.

In the wind chimes I can hear her tea cart
With its china rolling through Cook Street’s

Stony yard one summer when I was always
Thirsty, and she moved like a figure

On a clock from my lawn chair to the cart,
Or swabbed me with alcohol, or cut

My hair with the straight razor.
I was a week out of the hospital.

Beneath my breasts an incision was crossed
With stitches of surgical thread.

The scalpel came so close it gave
My heart a quick kiss. I nearly died.

Years later I can still see the skin
Flutter on the inside of my left breast

And my heart limps like a great uncle
Who, because he was a Jew and lame,

Was dragged by cossacks across the steppes.
He became a friend asking a favor

Of a horse who ran so hard, so perfectly
Hard, that the green grass rose to meet him.

Things that crack me up, #26

The Gimp Parade is the ninth Google result for the search:

replacement parts for older japanese vacuums

Because, you know, that's what I'm all about.

Is Roger Ebert a disability activist?

Melissa McEwan at Shakesville notes that Roger Ebert has just released a statement in his home paper the Chicago Sun-Times about his fight with cancer and the ravages it has taken upon his body. McEwan calls him a "disability activist" because he details the issues of his physical health and comments that illness is too much hidden in our society:

I’ve long admired his work: the way he critiqued films, his talent for writing about them, and his frank unpretentiousness about the whole process. I respected him as a film critic. I didn’t expect to respect him as a disability activist.

I generally agree with McEwan about the quality of Ebert's reviews. She says:

He’s my go-to reviewer and has been for so many years that I can tell by his reviews whether I’ll like a movie, irrespective of whether he did. I know on what we agree and what we don’t, and he rarely surprises me—and that’s not a complaint.

Until the release of Million Dollar Baby back in 2005, I, too, considered him my premier go-to movie reviewer for the same reasons she states. And I don't discount the public importance of Ebert's recently stating:

I was told photos of me in this condition would attract the gossip papers. So what?

I have been very sick, am getting better and this is how it looks. I still have my brain and my typing fingers.

…We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I’m not going to miss my festival.

I appreciate the pictures included in Ebert's report on his health and upcoming film festival too. Like many, I've been wondering how he's doing, and thinking of the grace with which his old partner Gene Siskel kept up work during his own decline from cancer. I suspect disability will be much more in the public eye as celebrity Baby Boomers age and face these same public image challenges.

But. I don't see the specifics of a disability activist that McEwan does in Ebert's announcement. What I see is a man with a very public job who has found himself at the point where he is visibly disabled and must now manage that in his public life. He's outed himself because he had no other choice. If he didn't address it head-on -- as most of us faced with visible disability and a public curiosity that rarely offers privacy for bodily difference are forced to do -- he couldn't get on with the business of movie reviewing.

Now, he did it head-on with a grace and good humor that I admire, and I hope that this will help him ease the public fear and patronization that could make his job as a respected movie critic hard or even impossible. But being left without the privilege of the physical anonymity of the nondisabled does not suddenly make Ebert a disability activist.

Disabled folks will remember our clashes with him about Million Dollar Baby, and how our concerns for the film's gross inaccuracies of quadriplegia were sidelined by the conservative v. liberal debate about the sanctity of life (notice how About.com files this debate under "Parenting Special Needs" in that latest link). Our anger at Baby producer/director/actor Clint Eastwood, a man who has dedicated considerable private energy to dismantling the ADA, was mostly ignored in favor of the battle of Ebert v. Medved.

I was brand new to blogging back then, but I posted about Million Dollar Baby here and here. You can also read about the disability rights issues around the movie in this old op-ed by Not Dead Yet's Diane Coleman, and this press release by NDY:

Not Dead Yet has been joined in condemning the film's "better dead than disabled" message by the National Spinal Cord Injury Association and the American Association of People With Disabilities, the nation's largest nonprofit cross-disability member organization.

Bill Henning, Executive Director of the Boston Center for Independent Living, is concerned about the denial of independent living in the movie. "I'm disappointed, if hardly surprised, that 'Million Dollar Baby' apparently ducks consideration of services that would have enabled Maggie to live a meaningful life. For thirty years we've helped thousands of disabled Massachusetts residents to live and prosper in the community, but Eastwood had to resort to a 'Hollywood ending,' one whose fundamental tragedy is not the actual storyline but its utterly false statement that a disabled life is not worth living."

"Imagine" added Kelly, "if in the boxing scenes, it was obvious that all the punches missed their targets by three feet, yet the characters fell down and suffered injuries anyway. The film would be laughed out of the theaters and disgraced in the academy. Well, The Mayo Clinic reports that there are up to 200,000 people living in the United States with a spinal cord injury, not one of whom seems to have been consulted for the making of this movie. The question is how could audiences and critics not even notice Clint Eastwood's cartoonish, negative depiction of the rehab experience?"

In January of 2005, as the Oscar ceremony from which Baby took home four awards approached, Ebert took aim at protests to the movie and at film reviewer Michael Medved and other conservative commentators for giving spoilers to the film:

In the case of some films, however, even to hint that there is a surprise is to reveal too much. In my review of "Million Dollar Baby," which I consider the best film of 2004, I wrote: "It is a movie about a boxer. What else it is, all it is, how deep it goes, what emotional power it contains, I cannot suggest in this review, because I will not spoil the experience of following this story into the deepest secrets of life and death."

.... The decision of Maggie and her trainer is not a surprise to the readers or listeners of two right-wing commentators, Michael Medved and Rush Limbaugh. They have revealed every secret of the plot. Limbaugh even chortled as he "apologized" for an earlier broadcast. Just as the movie was opening, Medved appeared on Pat Robertson's "700 Club" to describe the plot in great detail. The outcome of the movie does not match their beliefs. They object to it. That is their right. To engage in a campaign to harm the movie for those who may not agree with them is another matter.

I'd like to put aside any arguments about the general and persistent asshattery of Medved, Limbaugh and Robertson here because it's repeatedly taken attention away from the specific concerns of the disability community (on this issue and quite a few others). I want to look at the ableism in the idea that spoiling a movie is shameful behavior.

If the movie's last half had been about a sudden violent rape leading to the main character's death, or if she'd been a woman of color and killed by a racist act, or even if she'd actively committed suicide over despair relating to her working class upbringing, I do not believe Million Dollar Baby would have been hailed primarily as "a boxing movie" with a secret ending too precious to ruin. If Eastwood had not been the powerhouse celebrity behind the film, it would not have had the caché to elicit such need for silence on how the film ends. (If Eastwood had not been involved, the irony wouldn't seem so deadly to those of us who need public ideas about disability to be less about us choosing to die.)

I agree there's special pleasure in seeing a movie for the first time and letting its surprises unfold. And I'll concede that probably Ebert considered it his professional obligation to lobby in favor of that pleasure. But that pleasure does not trump silence when the result is audiences leaving a film with such a dangerous message, sold through misinformation about actual life as a quadriplegic, actual solutions for the challenges associated with it, and no alternative information available to the general public to even learn otherwise.

Ebert himself has occasionally let the issue of accuracy about Catholicism in films be more important than morally-neutral movie reviewing. On the film Stigmata:

It is also not possible, according to leading church authorities, to catch the stigmata from a rosary. It is not a germ or a virus. It comes from within. If it didn't, you could cut up Padre Pio's bath towels and start your own blood drive. "Stigmata" does not know, or care, about the theology involved, and thus becomes peculiarly heretical by confusing the effects of being possessed by Jesus and by Beelzebub.

And a longer excerpt from his review of Priest, which I find has some parallels to what disability activists argue about the inaccuracies in Baby (bolds are mine, but amuse yourself with the language irony in the first bolded sentence):

I am aware that the touchy-feely movement is so well established that no commercial film could seriously argue for celibacy. What I object to is the use of the church as a spice for an otherwise lame story; take away the occupations of the two central characters, and the rest of the film's events would be laid bare as tiresome sexual politics. The most obnoxious scene in the film is the one where the young priest, tortured by the needs of the flesh and by another problem we will soon get to, lectures Christ on the cross: "If you were here, you'd . . ." Well, what? Advise him to go out and get laid? The priest, named Father Greg and played by Linus Roache, picks up Graham (Robert Carlyle) for a night of what he hopes will be anonymous sex, but later Graham recognizes him on the street, and soon they are in love. This is all done by fiat; the two men are not allowed to get to know one another, or to have conversations of any meaning, since the movie is not really about their relationship, but about how backward the church is in opposing it.

Instead of taking the time to explore the sexuality of the two priests in a thoughtful way, "Priest" crams in another plot, this one based on that old chestnut, the inviolable secrecy of the confessional. Father Greg learns while hearing a confession that a young girl is being sexually abused by her father. What to do? Of course (as the filmmakers no doubt learned from Alfred Hitchcock's "I Confess") he cannot break the seal of the confessional - a rule that, for the convenience of the plot, he takes much more seriously than the rules about sex. This dilemma also figures in his anguished monologue to Jesus.

Once again, the church is used as spice. (Can you imagine audiences getting worked up over the confidential nature of a lawyer-client or a doctor-patient relationship?) But here the movie leaves a hole wide enough to run a cathedral through. The girl's father confronts the priest in the confessional, threatens him, and tells the priest he plans to keep right on with his evil practice (we don't simply have a child abuser here, but a spokesman for incest).

What the film fails to realize is that this conversation is not protected by the sacramental seal because the sinner makes it absolutely clear he is not asking forgiveness, does not repent and plans to keep right on sinning as long as he can get away with it. At this point, Father Greg should pick up the phone and call the cops.

The unexamined assumptions in the "Priest" screenplay are shallow and exploitative. The movie argues that the hidebound and outdated rules of the church are responsible for some people (priests) not having sex although they should, while others (incestuous parents) can keep on having it although they shouldn't.

For this movie to be described as a moral statement about anything other than the filmmaker's prejudices is beyond belief.

Those bolded phrases above could just as easily be me or another disability activist on Baby saying:

"What I object to is the use of assisted suicide and the trope of 'better dead than disabled' to spice up just another boxing movie."

"Instead of taking the time to explore living with quadriplegia in a thoughtful way..."

"The unexamined assumptions about disability in Baby are shallow and exploitative."

"For this movie to be described as a moral statement about anything other than Eastwood's prejudices about disabled people is beyond belief."

In fact, disability activists staged protests of the film in 2005 and did say similar things. And Ebert's response then included citing how he has disabled friends, once dated a disabled woman, and has enjoyed and featured a film or two about disability over the years. It's not that Ebert doesn't believe in protesting or objecting to political issues in films. Interestingly, he even objected to the "fascist" nature of Eastwood's Dirty Harry back in 1971. He just hasn't found disability issues compelling enough to support in the same way as Catholicism or the Bill of Rights.

Roger Ebert is a lot of fine things, especially in this latest report on his own physical health, and he may be or become a disability activist yet. But his simple statements outing himself do not themselves reveal him as a disability activist, especially given his public preference for not spoiling movie surprises over offering the facts about disability issues just two short years ago.


Visual description of the photo: Provided caption: "Sun-Times film critic Roger Ebert shows his thumb and his spirits are both in fine shape Monday at his home. Photo by Dom Najolia of the Sun-Times." (I think it's worth noting that if Ebert does still have a trach to help him breathe, he's hiding it for the camera in this photo. And buttoning your airway behind a shirt isn't the best way to get air. One step at a time, I suppose.)

Things that crack me up, #25

Finally, some recognition that we have friends that need venue seating too.


















Visual description: Two ordinary Western-style toilets, one with the seat up, spaced at most a yard apart. There's a roll of toilet paper on the back tank of each and a waste basket on the floor between. Some long stripey curtains are half drawn to hide these toilets, and a sign above the curtain rod these curtains rest on reads "For the HANDICAPPED."

Flickr photo by The Horror

Poetry: Michael Ryan

April is National Poetry Month, you know. I'm not feeling very introspective myself, and so I surf, finding interesting verse:

Letters from an Institution
by Michael Ryan

The ward beds float like ghost ships
in the darkness, the nightlight
above my bed I pretend is a lighthouse
with a little man inside who wears
a sailor cap and tells good old stories
of the sea. The little man is me.
Perhaps I have a dog called Old Salt
who laps my hand and runs endlessly
down the circular stairs.
Perhaps he bites like sin.
I dream of ships smashing the reefs,
their bottoms gutting out,
the crews’ disembodied voices screaming
Help us help us help somebody please
and there is no one there at all
not even me. I wake up nervous,
Old Salt gnawing my flesh. I wake up nervous,
canvas bedstraps cutting my groin.
The night nurse, making the rounds,
says I bellow in sleep like a foghorn.

*

Nothing moves at night
except small animals
kept caged downstairs
for experiments, going
bullshit, and the Creole
janitor’s broom whisking
closer by inches.
In the ward, we all
have room for errors and elbows
to flail at excitement.
We’re right above the morgue;
the iceboxes make our floor
cold. The animals seem to know
when someone, bored with holding
on, gives out: they beat
their heads and teeth
against the chicken wire
doors, scream and claw
The janitor also knows.
He props his heavy broom
against his belt, makes
a sign over himself
learned from a Cajun,
leaves us shaking
in our bedstraps
to drag the still
warm and nervous body
down from Isolation.

*

I have a garden in my brain
shaped like a maze
I lose myself
in, it seems. They only look for me
sometimes. I don’t like my dreams.

The nurses quarrel over where I am
hiding. I hear from inside
a bush. One is crisp
and cuts; one pinches. I’d like to push
them each somewhere.

They both think it’s funny
here. The laughter sounds like diesels.
I won’t come out because I’m lazy.
You start to like the needles.
You start to want to crazy.

A life sentence in prison for Daphne Wright

I wrote about the Wright murder trial here and here, but I'm going to defer to the Deaf bloggers that have been covering this case so closely.

Ricky Taylor at RIDORLive:

Few days ago, the jury has decided to turn the cheek and grant the life sentence to Daphne Wright who murdered Darlene VanderGiesen.

I applaud the jury’s decision. After all, we failed Daphne and Darlene both when the NCSD did not intervene when Daphne was having problems back then. We left the problems unchecked for years until Daphne killed someone else.

Mishka Zena on the defense's experts:

My biggest question is why hasn’t any of the lawyers use Deaf experts? We have Deaf psychologists, Deaf educators, and Deaf linguists. They live in the Deaf Community 24/7 and use ASL everyday. Of all the people, only they are the best to know how Daphne ticks. After all, they all are Deaf, something no hearing expert will ever understand. This should be obvious to anybody. Do the hearing people underestimate the intelligence of educated Deaf professionals? Audism?

Or is it the lack of access to these Deaf professional people? Are the Deaf professionals too ‘invisible’ to the hearing people? Any ideas?

Deaf in the City's Joseph Rainmound on the isolation and dangers waiting for Deaf people in jail:

The Alternative Solutions Center talks about this same issue:

As deserving of their punishment that some Deaf criminals might be, none of them deserve the cruel and unusual punishment of inaccessible communication during their prison time. Even with the ADA and constitutional guarantees, too many Deaf prisoners have their rights violated every day. They are denied access to certified sign language interpreters for court hearings, disciplinary meetings, and educational classes. Deaf prisoners have been punished unfairly for not following guards� orders because the guards did not know they were Deaf or were unable to communicate with them. Many prisons lack flashing light systems, TTYs, videophones, and captioned televisions. Deaf prisoners also face dangers of physical abuse and isolation.

It's more than just that though: they lack regular and consistent access to any of the rehabilitation facilities afforded to normal prisoners. Unless jails suddenly start having ASL interpreters available - or require all their prison staff to learn ASL - Deaf prisoners probably won't get the same kind of rehabilitation and preparation-for-release training that prisoners who can hear can access. This demands a bit of pity for the prisoner, but also worry - is this person ready to be released to our community?

Oh, yes, legally the jail is required to provide such access. But debates about what access is necessary - debates about whether the cost places undue burden on the jail - and of course the never-ending obsession some hearing people have with saying "Those Deafies just want everything and never stop complaining!" - are sometimes insurmountable obstacles. But it's not just for the benefit of the prisoner - it's also for the benefit of the communities to which that prisoner is going to be released. Deaf Civilians have a responsibility to make sure that access happens in prisons, because the prisoners are eventually going to be released to the Deaf community.

And the trial's liveblogging for the Argus Leader of South Dakota continues, though at a slower pace now that the verdict is in.

Carnivals new and upcoming, and the second annual BADD

Just a few hours left to contribute to the disability carnival at Ballastexistenz on the topic of "What Box?" Amanda says:

Remember it’s fine to submit other people’s work (including even if you don’t yourself blog), it’s fine to submit stuff whether the person has been linked before or not, whether what the person has written was written a long time ago or just recently, whether you think the person would have submitted it already, etc. etc. All the submissions so far have been really interesting and I’m looking forward to seeing more. I’d been planning to look around for possible entries myself, but I’m sick and I keep falling asleep in the middle of writing sentences, so I don’t think I’ll be getting around to that, so again please submit whatever you think applies.

The carnival will be up on Thursday.

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

Diary of a Goldfish is hosting the second annual Blogging Against Disablism Day on May 1. Don't let the terminology scare you: "disablism" is an alternative word for "ableism." Last year's amazing results were one of the reasons the Disability Blog Carnival was started -- so many people out there with experiences and thoughts to share, hundreds of bloggers popping up to incorporate disability issues into their views on social justice and experiences of bodily difference. Contributing is as easy as writing something relevant on your own blog around the 1st, and then leaving a link at Goldfish's so she can include it in the round-up. Anyone can contribute. And for that matter, if there's someone out there without a blog who would like to send me their guest post to put up here for the occasion, I'd be thrilled to do it so long as the topic is in some way "Blogging Against Disablism."

Belledame has The 36th Carnival of Feminists up at Fetch Me My Axe, in three parts. It's enormous and wonderful.

Sylvia at The Anti-Essentialist Conundrum is looking for submissions for the next Carnival of Creative Writing. Deadline is May 2. Check at Sylvia's for further details.

Jen Burke at Transcending Gender has many many posts just lately that include disability issues, plus the latest International Carnival of Pozitivities.

And up at Double Consciousness, the latest Erase Racism Carnival.

Have you seen Michael Patrick Vaughn?

Fellow blogger Kevin over at Slant Truth:

My brother has been missing for some time now. Seriously. My moms has even hired private investigators to find him and he is nowhere to be found. I fear the worst now. Yes, I fear that he is dead.

He rolled with the rough ones. I tried to get him out, but…

The only reason that I can say this online now is because I’m hoping that someone, somewhere might know where he is right now. His name: MIchael Patrick Vaughn. I think that he’s somewhere on the West Coast—maybe around Cali. I can give more information about hiim if needed (including pictures). Please email me here if you know of anything about him or have the slightest clue.

Here’s a picture of him:
























I'm a bit late posting this, and I don't know how much my adding the info to my little blog helps, but all my best thoughts are toward Kevin finding his brother safe and well.

Poetry Monday: Kenny Fries

To The Poet Whose Lover Has Died Of AIDS
by Kenny Fries

. . . then the wasting begins and the disappearance a day at a time. -- Mark Doty

The night of your reading I notice he has carved
a place for his wheelchair. But after the first
poem, through the applause, the noise of moving
out of his way. Then, only the space remains
and nobody, not even those standing, eyeing
what was his position, will take his place.
The next day, when you tell me he wet himself
and could not stay, I think how leaving causes so much
commotion, how in school during rollcall the teacher
never knew how long to wait for the voice, present,
before moving on to the next name in the order.
The tittering, the shifting in chairs, when it went on
too long. When you first told me he was sick,
I could not ask if you, too, were infected --
I searched your poems for clues. Now he has died
and I have gone back to read your poems, needing
your words to prove love does not disappear
a day at a time. All those years together,
over a decade of loss, and I don't know
what's left to say. If we are given love
only to have it taken away, what solace
can anyone offer but your voice be present
among the shifting chairs, the embarrassed noises
of absence. The wait is always too long.

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

Here's another poem by Fries.

Here's some news about Fries' Fulbright studies in Japan last year. And here's his brand spanking new book, called The History of My Shoes and the Evolution of Darwin's Theory.

And lastly, a poem by Mark Doty, the poet Fries writes to in the poem above.

Slumgullion #36 -- The deranged killer edition

The Republic of T -- How to Create a School Shooter:

Am I blaming the victims of the VA Tech shooting? No. I’m blaming the guy who picked up the gun and shot them. He did what he did; what he chose to do, but after, hearing about his experience in high school, seeing his videos and reading among his words “You made me do this,” I almost think he was shooting at everyone who’d ever mistreated him, or that he perceived as mistreating him; as well as those who laughed at the bullying, saw it but did nothing about it, or even approved of it.

I’m also saying that we as a people, as a society, have to stop our part in supporting the social systems and conventions that end up creating people like Cho and the others. Or, as Amy Traub said, “our attempt to understand doesn’t end with the casting of moral blame,” but with recognizing that there are things we can do, things we can change about our culture and our society if we choose too, that i help prevent more tragedies like this one. If that’s what we want.

Autism Vox -- On Some Comments about Cho Seung-Hui (lengthy comments on this post too):

Mention of Cho Seung-Hui possibly being autistic has been circulating on the internet throughout this week. Some charged exchanges have arisen on some blogs in regard to this; fears have been expressed about what such a connection—-of autism to what happened at Virginia Tech on Monday—might mean for the public perception of autism, and of autistic people in particular.

Respectful Insolence -- Vaccines caused the Virginia Tech rampage? (Via Autism Vox):

Never mind that blaming autism for the rampage is bad enough, but Moses has to compound the vileness by implying that vaccines can turn children into killers. Never mind that there is no good evidence that the mercury in thimerosal in vaccines in any way contributes to the development of autism or autism spectrum disorders. Never mind that the latest statistics from, for example, California show no decrease and, indeed, a continued increase, in its autism caseload in 3-5 year olds in the first quarter of 2007, now four years since thimerosal was removed from all childhood vaccines other than the flu vaccine, when by now, if mercury causes autism, we should have seen a huge decrease in the caseload. Never mind that there's lots of other evidence that shows no link between vaccines and autism.

MindFreedom -- I was a college student "mental patient":

As with any overwhelming tragedy, I'm also worried about what is waiting in the wings. We here at MindFreedom are pro-choice about people's choice to take psychiatric drugs, and when I was in college at one point i begged for antidepressants. However, after any major catastrophe, people experiencing prolonged despair and trauma and overwhelm and extreme differences and passion within this highly-conformist society... can end up on drugs, drugs, drugs, drugs, drugs, drugs, drugs, and more drugs, for years, decades and even life, all without adequate advocacy, information and alternatives.

The immensity, intensity and volume of the tsunami of psychiatric drugs hitting our young people -- both in and out of school -- is so outrageous, so potentially devastating, that it amounts to the Greenhouse effect of the mental health system. Currently the mental health system and our society are in denial. No "Al Gore" has emerged to go campus to campus, showing a slide show about how brain structures can be harmed from long-term high-dosage psychiatric drugging... and how there are better and more sustainable ways to help young people with mental and emotional distress and differences.

Writhe Safely -- Here It Comes:

People believe evil and psychosis are synonymous because we live in a system where evil acts can be pardoned by reason of insanity. Sometimes they come together in the same person, insanity and evil, check.

But to conflate the two is a logical fallacy, psychosis is not evil, and it doesn’t cause evil. Correlation does not imply causation, I assume most people understand this fundamental scientific principle. A person can suffer (and I do mean suffer) from psychosis without doing evil, and a person can do evil without exhibiting psychosis. But when evil and psychopathology co-exist in the same person we’re in for a shitstorm. A coercive, lock-em-up and throw away the key toldyaso shitstorm.

The Trouble with Spikol -- Tech Trouble:

Now that the photos and videos and writings have been released, it's reasonable to assume that Cho Seung-Hui suffered from serious mental health problems. But it's not that simple. It would be unfair to state, without elaboration, that Seung-Hui was mentally ill. That tars all mentally ill with the ol' violence brush--a damaging and innacurate perception that contributes mightily to the problem of stigma. It's too absolutist to say that.

Would it help, then, to identify the kind of mental illness he suffered? I don't think so. Whether he was chronically depressed or had OCD or anything else, the diagnosis cannot explain what he did. Yet I suspect that people will want a diagnosis because they're desperate for answers: Why did he do what he did? What makes a person do this?

Yet Another Never Updated Blog -- Don't draw the wrong lessons from Virginia Tech's misfortune:

The point is, we don't need to abandon recent efforts at inclusion and de-stigmatizing of people with mental illness. What we need is to take violent crime seriously, and understand that violent crime does indeed include intimidation, stalking, and arson. They aren't youthful errors. They aren't jokes. They aren't just little things that should be ignored. They are steps on a ladder of violent escalation.

I hope that all colleges will learn from this, not that mentally ill people are dangerous, but that crime is dangerous.

The Blogenberry -- Fallen records... fallen students:

I think the events at Virginia Tech are no more understandable than the events at the University of Texas in 1966. The eerie randomness of shootings and mental illness in a society awash with weapons and violent mythology. A giant state school campus that is a training factory with aggressive recruiting of students from all races and backgrounds is going to come with its share of alienation. In global terms what is the context of this event? 32 dead can hardly match the nearly 200 dead in a single bombing in Baghdad (including 17 U.S. soldiers) this week. Yet there were no network anchors in Baghdad, no ribbons and candles and live broadcast vigils from Baghdad. No scrapbook for Baghdad even though its carnage is not unrelated to the random horrors at Virginia Tech.

Despite tantalizing talk of warning signs and disturbing behavior there is no real way to stop a Seung-hui Cho bent on slaughter just as there is no way to stop an Islamic terrorist, self-proclaimed martyr (recorded on videotape) on his way to heaven via the suicide bomb express. Suicide attackers in Austin, Oklahoma City, Baghdad or Blacksburg leave no real insights into their motives or lessons for preventing the repeat of their crimes. What they do leave are grisly, vivid mementos for the scrapbook. The attackers themselves have joined the ritual of their own deadly aftermath.

504 Sit-in Anniversary

Ed Roberts: Congressional Hearings in the Federal Building, Friday April 15, 1977, conducted by Congresspersons Phil Burton and George Miller

I had prepared testimony which I will give you, but I think I'd like to wing it.

First of all, I would like to begin by saying to the two of you who came and saw and helped us over these years in major battles, thank you. Now we're down to the bottom line. The basic issue here is are we going to perpetuate segregation in our society. We are one of the largest minorities in this country. I looked at the 18 points H.E.W. put out this morning. I have never seen a better blue print for segregation. These kinds of issues, the issue of Civil Rights and Human Rights are not issues that people with disabilities can compromise with any further.

My ability to move around and my ability to regain a pride in myself as a person with a disability is one of the most important things that has happened here today. To see hundreds of people with disabilities roll, sign, using canes, the more severely retarded people for the first time joining us in an incredible struggle, is one that leads me to believe that we're going to win this. Because we are not going to stop until 504 is a reality. 504, I believe, is a basic Civil Rights platform, a platform that guarantees to each person with a disability in this country that they are equal in the eyes of the law and that they will have equal access to educational institutions, hospitals, to the institutions in our society which serve us all?.

This Hearing is symbolic and we want you involved. And we are going to make a change then, and by making these changes we're going to begin to acknowledge in this society that people with disabilities are people first and we are not going to concentrate on the fact that they happen to be different. In fact, I am proud enough now to believe that people in our society are missing a tremendous feeling by not knowing me, by not knowing Judy Heumann, by not knowing the people here and the millions of other people with disabilities in our society. I think this country would be a much freer and fuller place if equal access and equal rights were guaranteed.

Judy Heumann:

It's very difficult for us to sit here allowing discussions to go on which, in our opinion, really violate the intent of the law. Whether here was a Section 504, whether there was a Public Law 94-142, whether there was a Brown vs. Board of Education, the harassment, the lack of equities that has been provided for disabled individuals, that now is even being discussed by the administration, is so intolerable that I cannot put into words. I can tell you that every time you raise issues of separate-but-equal the outrage of disabled individuals across the country is going to continue, is going to be ignited. There will be more takeovers of buildings until finally, maybe, you'll begin to understand our position. We will no longer allow the government to oppress disabled individuals. We want the law enforced. We want no more segregation. We will accept no more discussions of segregation and I would appreciate it if you would stop shaking your head in agreement when I do not think you know what we are talking about.

Jeannine Whitmer, Demonstrator

I know the issues around 504. I know how it will affect educational facilities. I went to school at Wayne State because it was accessible, and it was assumed I would go there. It had nothing I wanted- it was the only option open. Michigan State and U. of Michigan were and are inaccessible. Now I go to SF State and it is relatively accessible. It's taken four years, chopping down their barriers. The building which has the liberal studies in it is inaccessible. Basic Science building is inaccessible. That means the disabled cannot go into the technical science fields there. If I were just starting in my education now I would go into medicine. As an undergraduate they said to me, "You want to be a doctor?" I was laughed at, so out of frustration I went into education, because it was easy and I wanted an education.

Source

Note: I've got lots going on this weekend (and this past week), but didn't want to pass this anniversary by without reminding those that might not know it that at age 38, I belong to the first generation of disabled Americans who were allowed to attend grade school and high school with our nondisabled peers. There were exceptions, but physically disabled children (and definitely developmentally disabled children) were routinely excluded from all public school interaction with their nondisabled peers, sometimes entirely because they rode on wheels. It is because of the heroes of the 1977 504 sit-ins who demanded that the Rehabilitation Act of 1973 be fully implemented. They said they would wait no longer and they demanded equal access to public buildings. The ADA was possible because of this. My education and ability to sit here and type today was profoundly effected by the actions of these disability rights heroes of the past. Just thirty years ago.

More linkage as I get the time.

Update: Here's some background info on the Rehab Act and the 504 Sit-In, written for the Independent Living site by Chava Willig Levy:

The Rehabilitation Act of 1973

In October 1972, Congress passed a rehabilitation bill that sparked jubilation among disability rights activists. That jubilation was short-lived, however, because President Nixon promptly vetoed the bill.

Ten years earlier, the disabled community might have swallowed this bitter pill of defeat stoically. But revolution was in the air. Protests were staged across the country. In New York City, Heumann and eighty comrades held a sit-in on Madison Avenue, bringing traffic to a standstill (Ingram, 1981). Angry letters and demonstrators flooded Washington. Finally, Congress overrode Nixon's veto. On September 23, 1973, the Rehabilitation Act of 1973 became law.

Once again, jubilation was tempered with certainty that the battle had just begun. The new law was a meaningless piece of paper without federal regulations through which it -- and particularly Section 504 of the law -- would be enforced. Section 504 states:

No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.

Eunice Fiorito, former director of New York City's Mayor's Office for the Handicapped, first president of the American Coalition of Citizens With Disabilities, and currently Special Assistant to the Commissioner of the Rehabilitation Services Administration, recalls:

It was 1975 and there were no regulations. We proceeded then to come into 1976 and there were still no regulations, and therefore the law was not being implemented. (In 1977) within two days after the Carter Administration was put into place, about 15 of us came to see Secretary (of Health, Education and Welfare) Califano, expressing our desire to work with him and his staff to get (the regulations) out in a reasonable period of time. We went back and forth to meeting after meeting in good faith. And we finally said to them, "Look, we have had enough. If you cannot come up with a decision, then we must take action."

We gave them until the fourth of April. And on the fourth of April, they did not have the regulations ready for issuance. So we developed an alternate plan: to bring our plight to the attention of the [American] people. (Ingram, 1981)


Taking a Stand by Sitting in

On the fifth of April, disabled activists took action in 10 cities across the country. With reason to fear that the 504 regulations were to be rescinded, they staged sit-ins in federal office buildings. Their demand: that the 504 regulations be signed into law. In most cities, the demonstrations were over by day's end. In the nation's capital, officials would not allow food and drink into the building, starving the demonstrators out. "But in San Francisco, [over 150] demonstrators stayed and stayed. They were not going to go away" (Ingram, 1981).

Mary Jane Owen was there.

After sleeping the first night on the hard floors, mattresses were delivered from the supplies of the State Health department. Food arrived from McDonald's, Delancy House's drug programs, the Black Panthers and Safeway. The Mayor himself scolded the federal officials for ignoring the needs of the uninvited guests and brought in shower attachments to be used in the tiled restrooms.

Some of us decided to call a hunger strike to confirm to ourselves and others our commitment to stay at any cost There were so many [heroes] -- Steve, who lay day after day and night upon night, [recording] events because -- he knew what was happening was important enough to risk his health; Jeff, who... wrote new words for old civil rights songs with which we loudly greeted federal employees [each] morning; the deaf woman who entered the building to teach a class in sign language and stayed; the mentally retarded woman who always injected a note of realism into our too abstract deliberations. (Owens, 1987, p.9)

On April 28, the demonstrators learned that Secretary Califano had signed the 504 regulations. They continued to occupy the building, however, until they had reviewed the final regulations and were satisfied with their content. On May 1st, the motley crew representing virtually every disability-disbanded, knowing that this experience would unite them forever.

BTW, Chava Levy hasn't updated her blog in a long time, but her "Yellow Sign" story, parts 1, 2, and 3 are good crip reading.

On Virginia Tech

My thoughts go out to the families and friends of those killed at Virginia Tech. It's hard to know what to say about such devastating violence and tragedy, or if to say anything at all. I've left some meandering thoughts over at Avast! Feminist Conspiracy!, and while there will be much speculation in the days and weeks to come about Cho Seung-Hui's mental health, I've nothing to say about that here at this time.

Double discrimination for ethnic minority children with autism

Source: BBC News

Excerpt:

A National Autistic Society report on "the reality for families" suggests 62% of parents had no choice over the school their children would attend.

Children with autism who are from ethnic minorities face a double discrimination in education, campaigners say.

Parents were much less satisfied with their child's academic and social progress than White British parents.

The government said meeting the needs of autistic children was "a priority".

Parental perceptions are that their children lost out because of the sort of unwitting racism identified in a recent Department for Education and Skills report.

Joan Nelson, whose son is black and has autism, told the society she believed ethnicity had a significant impact on the level and type of education he was given.

"There appeared to be more of a belief that my child was bad as opposed to having special needs," she said.

Black boys were penalised because their special needs meant they had difficulty accessing appropriate education, because they were Black, and because they were boys, she said.

"This hinders them in achieving what they should in today's system."

Transgenderism and disability rights

Found via Trinity at The Strangest Alchemy, this post by Eli Clare, which is a transcript of Eli's keynote speech at the FORGE Forward Conference. Read it for the gorgeous poetry. Or the connections Eli's made between transgenderism and the disability rights movement.

Eli begins:

All my life as a genderqueer crip, I have puzzled my way through bodily difference, struggling with my own shame and love, other people’s pity and hatred. Yesterday I helped facilitate the Disability Gathering here at the conference. We spent the day, disabled people and our allies telling stories, laughing, crying, and sitting quiet. It reminded me of the incredible importance of community, how bodily difference means one thing in isolation and quite another when we come together, finding ourselves reflected in each other’s stories.

My first experience of queerness—of bodily difference—centered, not upon sexuality or gender, but upon disability. Early on I understood that my body was irrevocably different from my neighbors, classmates, playmates, siblings: shaky, off balance, speech hard to understand, a body that moved slow, wrists cocked at odd angles, muscles knotted with tremors. But really, I am telling a kind of lie, a half truth. Irrevocably different would have meant one thing. Bad, wrong, broken, in need of repair meant quite another. I heard these every day as my classmates called retard, monkey, defect, as nearly everyone I met gawked at me, as my parents grew impatient with my clumsiness. Irrevocably different would have been easy compared to this. I stored the taunting, gawking, isolation in my bones; they became the marrow, my first experience of bodily difference.

.... But really I want to delve beyond the rhetoric we often don’t pay attention to. Delve into the myriad of lived bodily differences here in this room tonight and think hard about three lessons I’ve learned from the disability rights movement. The first is about naming, the second, about coming out and disclosure, the third, about living in our familiar, ordinary bodies.

I could try and summarize what he talks about, or explain how brilliantly he manages to explain what has been a vague unarticulated barrier to my own fuller understanding of transgenderism, but I really need to think on it for awhile. I will say this much: the connections Eli makes between the lived bodily experiences of disability and transgenderism show implicitly why anti-trans hate is hating on us all.

Poetry Monday: Every Man's Burden

The Magic Wand
by Lynn Manning

Quick-change artist extraordinaire,
I whip out my folded cane
and change from black man to blind man
with a flick of my wrist.

It is a profound metamorphosis—
From God gifted wizard of roundball
dominating backboards across America,
To God-gifted idiot savant composer
pounding out chart-busters on a cockeyed whim;
From sociopathic gangbanger with death for eyes
to all-seeing soul with saintly spirit;
From rape deranged misogynist
to poor motherless child;
From welfare-rich pimp
to disability-rich gimp;
And from ‘white man’s burden’
to every man’s burden.

It is always a profound metamorphosis.
Whether from cursed by man to cursed by God;
or from scriptures condemned to God ordained,
My final form is never of my choosing;
I only wield the wand;
You are the magicians.

A musical interlude with Joni Mitchell

When Mitchell was 9 she got polio, and while the effects of the disease have not been readily apparent to most of her fans, her music has been creatively shaped by a weakened left arm:

From the beginning, Mitchell played guitar in different tunings to compensate for the fact her left hand had been left weakened by a childhood bout with polio. As a result, her chord shapes, combined with the meandering meters of her more fanciful compositions, tend to resemble jazz more than standard folk or rock.

In a conversation with Joni Mitchell by Jody Denberg, September 9, 1998, Mitchell said:

...the 80s were a rough decade for me and on top of it I was diagnosed as having post-polio syndrome which they said was inevitable for I'm a polio survivor, that forty years after you had the disease, which is a disease of the nervous system, the wires that animate certain muscles are taken out by the disease, and the body in its ingenious way, the filaments of the adjacent muscles send out branches and try to animate that muscle. It's kind of like the EverReady bunny, the muscles all around the muscles that are gone begin to go also because they've been trying to drive this muscle for so long. That's the nature of what was happening so I had it mostly in my back, so you don't see it as much as you would in a withered leg or an arm. But the weight of the guitar became unbearable. Also, acoustic guitar requires that you extend your shoulder out in an abnormal way and coincidentally some of the damage to my back in combination with that position was very painful. So, there was a merchant in Los Angeles who knew of my difficulties and knew that this machine was coming along that would solve my tuning problems and he made on spec a Stratocaster for me out of yellow cedar that was very light and thin as a wafer, so an electric guitar is a more comfortable design for my handicap. Then, a genius lothier built me this two and a half pound guitar which is not only beautiful to look at but it kind of contours to my body. It fits my hip and even kind of cups up like a bra! It's just beautifully designed and then also I abandoned regular medicine and fell into the hands first of a Kahuna and then a Chinese mystic acupuncturist who put down his pins and just points at you. I know this sounds real quacky but they did some mysterious good to the problem and I feel fine.

Direct link to video at YouTube here. It's a live performance of "Both Sides Now" from 1970.

Things that crack me up, #24

From Flickr by gmack24

Visual description: It's a photo of a brown sign posted to a cement wall. There's a walking pedestrian with a red circle and slash across her and these words below: "Do Not Walk on Ramp"

Daphne Wright found guilty of murder; death penalty decision yet to come

I recently wrote about Daphne Wright, the Deaf black lesbian charged with a brutal murder in South Dakota. This week the jury found her guilty after eight hours of deliberation. Story here.

On the penalty phase of the trial, coming this next week:

"The door is wide open for the defense putting on any kind of evidence that the defense believes might sway a juror to opt for life in prison rather than the death penalty," [South Dakota Attourney General Larry Long] said.

One possibility for the defense is to show how her deafness may have been an issue in the case.

At a pretrial hearing, a defense witness who is an expert on the deaf testified that it's borderline whether Wright could understand what's going on in the courtroom.

McCay Vernon of Florida said Wright reads at the third-grade level but either was deaf at birth or at 10 months of age, when she came down with rubella.

The rubella also may have caused some brain damage, though Wright has above-average intelligence, Vernon said.

She understands sign language well but may miss some things because it takes two to four times longer to say something through signing as normal speech, he said.

And Wright doesn't easily grasp the definition of some legal terms, such as Miranda rights, Vernon said.

"When you use the term 'rights,' they mean right like to the right hand or right like correct," he said at the time.

Commentary by Chuck Baldwin, the Argus Leader South Dakota journalist who live-blogged the event, includes further discussion about the possibility of fair trials for people not remotely demographically represented by the jury, specifically D/deaf individuals:

Deaf people feel out of place and discriminated against in the hearing world. American Sign Language, after all, is their first language. English is, at best, a second language. And they are Americans.

But how many of us try to learn their language? Who even thinks that communication might be our responsibility, too?

Add to that - Wright is black and a lesbian in mostly white, Bible-thumping South Dakota - and there was a real concern. Could she get a fair trial here?

Could she get a fair trial with no blacks, no lesbians, no deaf people on the jury?

Could she get a fair trial when Judge Brad Zell rejected a defense motion for consecutive translation, which is more accurate than the simultaneous translation used?

Could she get a fair trial when Zell rejected a defense motion to allow a certified deaf interpreter in the courtroom with her?

This isn't about guilt or innocence. It's about a fair trial. And many deaf people around the country have been absolutely certain South Dakota was trampling on Daphne's rights - guilty or not.

Headlines like this one illustrate why that is an important question.

Deaf blogger Ricky Taylor at RidorLIVE.com offers a racist, misogynist link (you can go to his site for it, I'm not linking here) further showing the kind of prejudices that exist out there and talks about the Wright case and verdict himself:

I do not care if it was Daphne or Jane Doe as long as she is Deaf. Why? Because it sets the precedence for others to follow in the future trials. What we see in Sioux Falls may set a tone for others to follow by saying, “Well, they did not use deaf peers on the jury, why should we?” in the future trials.

It is all about the right to be JUDGED by HER/HIS peers. It has nothing to do with accomodations (It is good that they are doing a good job on it!).

More on fair trial concerns here.

Disability Carnival #12 at From Where I'm Sitting

It's on crip culture of all kinds. Go. Enjoy. Tokah has done a remarkable job!

The next carnival is scheduled to be at Ballastexistenz on Thursday, April 26. Deadline, I expect, is the Monday before, as usual. Amanda has set the theme as "What Box?"

Also, I've just volunteered to host a carnival in May but I'm not sure of the exact date yet. The theme will be "Firsts" in whatever way you'd like to interpret that. I'd especially like to see our nondisabled allies contribute, as well as disability bloggers who haven't been heard from yet or feel they might not be qualified to post. More details later.

New to the blogroll

Although some of these used to inhabit my blogroll before the great sidebar catastrophe of January, I've just added the following under "More Gimp Parades":

40 Million, Blind Bookworm, Chewing The Fat, Croneway, Diabetes Mine, Disability Culture Watch, Eschara, Funky Mango's Musings, Lisa Bufano, Modus Vivendi, Screw Bronze!, Selectively Bossy, The Adventures of a Paperback Princess, Peter Tan's Digital Awakening, The Future Doc Wilson, The Opposite of Tragic, The Rettdevil's Rants, and Wordgathering.

I learned recently from Skippy's posting about the technical side of blogrolling that my vast list of disability bloggers will rank lower on Google the more I add to it. That's unfortunate if it makes it harder for people to find each other, but it doesn't change my plan to add any gimp blogger to my roll who writes on the social aspects of living with impairments. Actually, I judiciously add sites that are not blogs too, and there are several new examples of that above.

Mini-Slumgullion #35

Lots of people think politics don't really matter,
but if you're one of the poor and disabled people
who have to rely on the government,
politics can kill you.

Nick Dupree -- "I Feel messed Up":

This country has been slashing programs for the poor and disabled for over a decade like it has no consequences, or worse, as I detailed in Fighting Cuts, Demanding Universal Health Care, they think that cutting off services benefits them--that it is a great thing. It isn't. It doesn't benefit you. It is evil. I believe this is the fifth 21 cut-off death in the city of Mobile alone, that I know of. The disability community in the South feels under siege. Know that there's still a developing, worsening situation with home care policy in America as more and more people turn 21 and find the supports they need just aren't there.

Politics is not a game. The disregard (or outright cruelty) of politicians can kill.

The latest news on Baby Emilio Gonzales:

A judge granted a family's request to keep their critically ill baby alive, ruling Tuesday that the boy should not yet be removed from life support as the hospital planned.

Children's Hospital of Austin has been caring for 17-month-old Emilio Gonzales since December, but it says its medical efforts are futile and the child is suffering. It invoked a state law that allows hospitals to end life-sustaining treatment in such cases with 10 days notice to the family.

Emilio's mother, Catarina Gonzales, 23, challenged the decision, and the judge agreed to block the hospital's move for at least nine more days.

"He may not live that long, but that's nobody's choice. That's my choice. And that's God's choice. Nobody can say, 'No we're going to take him off, that's it,'" she said. She says her only son isn't unresponsive, and that he smiles and turns his head toward voices.

Probate Judge Guy Herman set another hearing for April 19 to consider Emilio's case.

The boy has health coverage through Medicaid, and the hospital contends money is not part of its decision. Its concern, hospital officials said, is the boy.

Michael Bérubé at Pandagon on "Testing, testing":

There are people who oppose abortion except when the fetus has a significant disability; there are people who support a woman’s right to abortion but oppose prenatal screening on the grounds that it will lead to a revival of eugenics. And, as I point out in the essay (by way of the work of Rayna Rapp, who’s written a terrific book on the subject):

the ultra-orthodox Hasidim in New York are strenuous promoters of prenatal genetic screening because Tay-Sachs disease — a genetic disability so excruciatingly debilitating that it sometimes seems as if it were invented by bioethicists as an extreme limit case — occurs disproportionately often in Ashkenazi Jews.

You can learn more about Tay-Sachs here, if you like — and then you can think about whether you would seek to bar prospective parents from screening for it. Interestingly, Rapp points out that while otherwise politically and culturally conservative Jewish groups (one of which advocates prenatal screening and conducts arranged marriages) have embraced screening for Tay-Sachs, the Catholic Church (OK, folks, here it comes) in New York City owned the airspace rights to a new hospital building under construction and demanded that “genetic counselors be barred from working in the new maternity service to be located there.” So while some religious traditions can be downright extremist, it’s not as if all religious conservatives agree about this kind of thing. Nor is it the case that all opponents of screening are conservative; some of them are disability-rights activists whose politics are generally feminist and socialist.

It's a weird choice of quote just above since Bérubé's post has lots of thoughtful aspects to it, but I just felt compelled to highlight that last sentence: "Nor is it the case that all opponents of screening are conservative; some of them are disability-rights activists whose politics are generally feminist and socialist." Those of us who are feminist disability-rights activists possessing impairments/disabilities are often disbelieved or dismissed when our political opinions appear to align with conservative beliefs. I say "appear" because I think that's a failing of those liberals who can't see the politics of choice in all its incarnations, particularly the ones that don't directly concern them. But anyway.

Another interesting aspect of the discussion Bérubé starts with this post at Pandagon is that the comments are overwhelmingly about gayness being something one is born with. As a topic, that's intriguing, I suppose. As a topic shift, it's tiresome and irritating. I haven't added to the conversation over there yet (so I've little excuse to complain, perhaps), but I invite everyone to do so.

A musical interlude

"Girl Anachronism" by The Dresden Dolls

the lyrics by Amanda Palmer:

you can tell
from the scars on my arms
and cracks in my hips
and the dents in my car
and the blisters on my lips
that i'm not the carefullest of girls

you can tell
from the glass on the floor
and the strings that're breaking
and i keep on breaking more
and it looks like i am shaking
but it's just the temperature
and then again
if it were any colder i could disengage
if i were any older i could act my age
but i dont think that youd believe me
it's
not
the
way
i'm
meant
to
be
it's just the way the operation made me

and you can tell
from the state of my room
that they let me out too soon
and the pills that i ate
came a couple years too late
and ive got some issues to work through
there i go again
pretending to be you
make-believing
that i have a soul beneath the surface
trying to convince you
it was accidentally on purpose

i am not so serious
this passion is a plagiarism
i might join your century
but only on a rare occasion
i was taken out
before the labor pains set in and now
behold the world's worst accident
i am the girl anachronism

and you can tell
by the red in my eyes
and the bruises on my thighs
and the knots in my hair
and the bathtub full of flies
that i'm not right now at all
there i go again
pretending that i'll fall
don't call the doctors
cause they've seen it all before
they'll say just
let
her
crash
and
burn
she'll learn
the attention just encourages her

and you can tell
from the full-body cast
that i'm sorry that i asked
though you did everything you could
(like any decent person would)
but i might be catching so don't touch
you'll start believeing youre immune to gravity and stuff
don't get me wet
because the bandages will all come off

and you can tell
from the smoke at the stake
that the current state is critical
well it is the little things, for instance:
in the time it takes to break it she can make up ten excuses:
please excuse her for the day, its just the way the medication makes her...

i dont necessarily believe there is a cure for this
so i might join your century but only as a doubtful guest
i was too precarious removed as a caesarian
behold the worlds worst accident
I AM THE GIRL ANACHRONISM

Poetry Monday: The Knife of Language

Helen Takes the Stage
by Kathi Wolfe

(Helen Keller starred in a vaudeville show The Bluebird of Happiness in 1924.)

Here I am,
playing,
like a well-trained
seal, for you,
between the clowns
and singing dogs.
Your surprise
at seeing me in the flesh
in a room smelling like cigars,
makes my skin prickle with heat
more than the stage lights.
Did you know
that Mark Twain taught
me to play pool and spit tobacco?
Annie, my teacher, hates
my being here.
"It's so undignified
to tell jokes to drunks
and traveling salesmen," she says.
I crave applause
more than scotch, cigarettes
or hot dogs swimming in mustard.
With the knife of language,
I've carved out the best life
an icon can.
But, being a saint
is as difficult
as getting a drink during Prohibition.
Yet, until the curtain falls,
I am tethered, like you,
to the laughing
muck and mire of the earth.


And from The Washington Post in July of 2001, an article by the above poet on heroes and inspiration: "He's Your Inspiration, Not Mine":

Don't get me wrong -- I like to readnews reports on disabled people, at least when they're about issues -- health insurance, discrimination, education -- that concern me and my peers.

Just keep us in some kind of real context. Occasionally, show us not as main characters but as background characters -- like a story about a Metro delay or the Smithsonian Folklife Festival that includes, but doesn't necessarily feature, the folks with white canes and wheelchairs stuck on the subway or sitting in the audience. And on TV and in movies, give us some roles as regular characters -- like Marlee Matlin's deaf political consultant on "The West Wing." There's been progress on this front in the last few years; I'd like to see more.

And I'd like to see stories about some of the peoplewho really are heroes to those of us with disabilities. Like those who found a sudden demand for their previously unwanted services during World War II, and rose to the challenge. While able-bodied men were away fighting, disabled people worked in factories and offices and served as volunteers. Reporting for a 1995 article, I talked to Norma Krajczar of Morehead City, N.C. As a visually impaired teenager in Massachusetts, Norma was a volunteer aircraft warden; the thought was that her sensitive hearing would give her an advantage over sighted wardens in listening for enemy planes. And I learned that Akron, Ohio, became known as the "crossroads of the deaf" because of all the deaf people who came to work in tire factories converted to defense plants -- making more money than they had ever been able to before. Yet, even with all the reporting that's been done recently about the Greatest Generation, you don't hear much about those folks.

If Skippy or Sarahlynn sent you: Welcome!

Thanks for coming, and thanks to Skippy and Sarahlynn.

If you want to read a couple things I've written recently (as opposed to Things That Crack Me Up and Slumgullions) go here here or here.

As it should be, of course

The Gimp Parade is the number one result of a Google search for:

"she is a very sexy vent dependent quadriplegic"

How I love that someone typed in this particular search, regardless of who they were hoping to find.

"Autism Speaks" creator on Oprah

Kristina Chew at Autism Vox reports that Oprah will feature "The Faces of Autism" on April 5 (tomorrow), except those faces will be filtered through the lens of guest Suzanne Wright, co-founder of Autism Speaks. For those unfamiliar, Wright's organization is responsible for the video "Autism Every Day," which will also be featured on The Oprah Winfrey Show. The video was released in May 2006 and features a mother saying in the presence of her autistic child that she thinks about killing that child.

You can read about the reactions of autistic folks to this video here, here, and here.

Oh, Oprah.

Things that crack me up, #23

From Flickr contributor giginger

Visual description: A window display with five different wheelchairs among green and warm reddish-orange curtains. A big sign reads "Don't you wish your wheelchair was HOT like me?" and three smaller signs by different wheelchairs reading "Don't cha?" "Don't cha?" "Don't cha?"

Medical professionals who are excellent, asses and part of a failing system

My posse and I trekked into the Twin Cities this morning (despite threats of dangerous weather that have come true all around Minnesota over the day) because of a malfunctioning G/J feeding tube that needed immediate replacement. The balloon part that inflates in my stomach to hold it all in place had deflated itself and the damn thing was trying to come out, which it cannot really do without also pulling away from where it enters my upper intestine (jejunum).

This deflation and migration caused me some discomfort but not any intense pain, the hospital that installed it worked me into the schedule this morning and it was easily replaced. I returned home before people started sliding off the icy roads and all is mostly well with my world.

But there's this little drama that plays out each time I get the tube replaced and I've only just today discerned the pattern among the cast of medical professionals I spend about a half hour with -- usually every three months. The nurse who comes to get me in the radiology recovery room (for outpatient procedures I am unfamiliar with) is always male, which is fine, but curious since nursing is a predominantly female profession. He's also always incredibly personable and relaxing to be around, which I appreciate since he is my host to Events That Thus Far Have Gone Smoothly But Do Involve Medical Risk. This host has been several different specific guys in the past year, all kind and competent.

The x-ray techs are also mostly male in this high tech procedure, though today there was one woman present other than myself and the nurse I brought with me from home. These x-ray techs do non x-ray-ish things like sterilize my stomach with Betadine and arrange the surgical drapes. I expect the specialization of the nursing and x-ray tech requirements somehow explains the male predominance I've observed, but I don't know exactly how or why.

The nurses and x-ray techs have all always been reassuring, professional, caring, kind, responsive -- everything you want in medical people. The doctor shows up for five minutes to yank the old tube out and thread the new one in. The guy I usually get calls me "sweetheart" and comes and goes rather politely but quickly. He seems skilled, and I appreciate that.

But here's the thing: He's a total ass to the other people and, in subtle ways, to my nurse. It's not one isolated incident. He's displayed asshattery on several occasions now, belittling the employees under him at the hospital and treating my nurse like she and others like her are either negligent or incompetent. Today's deflated balloon and faulty tube, he asserted to my nurse, was the fault of her and others in my employ who just won't leave it alone and must have manually deflated the balloon.

The doctor discussed this with my private nurse out of my hearing, basically giving her professional chiding and advice without ever once consulting me about my care. It didn't dawn on me until today that not only am I just a body on the table that he does a quick procedure to and then leaves, but he doesn't even consider me a partner in my own care of the equipment he installs in my body. Perhaps because I have a nurse, I don't know. Maybe it's part of his abrupt pragmatism and crowded schedule, but I doubt it's as simple as that.

Meanwhile, the other employees of the hospital that he seems to consistently belittle and treat like dirt continue to shower me with thoughtful care. It's unlikely he's like that just when I'm around once every few months, right? This is a working condition for these other professionals that serve me well and might someday decide that they don't deserve this crap and move on to another job.

There's gender, ableism and a kind of professional classism at work in these dynamics I observe, and it's taken me a year of quarterly encounters and some quizzing of my nurse to get a fuller picture of it, since I'm not privy to all of it that occurs even in my specific interests. And this is an example of medical competence, really. In all ways medical, it's basically a successful encounter. And yet that successful-ness seems precarious to me because of all the power dynamics involved with this one doctor, and that's been on my mind all day.

Genni McMahon, who blogs at Ilyka Damen's, has had much more dramatic, critical problems with medical care on her mind today. Read it all, but here's a taste:

My mother became very ill the night before last with a high fever, extreme body aches, and weakness. She’s 62, swims three times a week and uses her Nordic Track everyday. She’s a partner in an accounting firm, takes no prescription medicine, and is a health nut. She couldn’t get out of bed, so my sister and I went to her house and called her doctor; he’s a skilled physician, but like most of the system, he’s a doc for profit. His office told us to take her to the ER. There, we had a really bad experience and they managed to nearly kill her, which I’ll share in a moment.

First, though, let me say that in spending the entire day in an ER, with momentary breaks to go get things from my mom’s house and take a kid from one caretaker to another, I noticed what I think is the absolute cornerstone of What’s Wrong With Healthcare In America. I’m sure you’re curious as to my discovery, so I’ll let you experience it as I did.