Deciding who's legitimate

Although it's been a very quiet scuffle as far as blogger disagreements go, there's been a bit of a dust-up among disabled bloggers recently. It's been so quiet that it's impossible to tell how many people know about it, have strong opinions about it, or are effected by it, specifically.

Generally speaking, the issue is about disability hierarchy, or judgments disabled people place upon other disabled people regarding their abilities and inabilities. I suppose this kind of ranking is human nature since it happens within the black community according to skin shade and within the GLBT community with regard to how closely individuals meet gender binaries (male, female; likes men, likes women).

One type of disability hierarchy relates to types of impairments. Basically, among the obviously disabled, people with spinal cord injuries rank higher than folks with congenitally-caused conditions, intellectual or developmental impairments, and mental illnesses -- and the less-paralyzed the better for SCIs as well. The more normal the body (and behavior) the higher you rank; the less drooling, spasticity, deformity, etc., the higher you rank.*

Unless you're normal enough to pass as nondisabled, and then it gets tricky. The misleading idea that ability and disability make up a binary situation leads to questions of whether or not an individual is truly impaired or disabled. At what point is one legitimately disabled? How can you tell who's a fake? What if your condition is intermittent or varies daily? How much of a developmentally-impaired individual's behavior is abnormal and how much is just not accepted by a narrow-minded public? Are you still disabled if your bipolarism is controlled by medication? If your prosthetic limb works so well no one would know that it's underneath your pant leg, do you qualify or not?

These aren't just arbitrary questions. Much of it has been written into law as if there are definitive answers, and people qualify for assistance of various kinds depending on the legal ruling. Besides personal identity, there's a lot of money and some legal rights at stake. These legal determinations bleed into social interaction and voilà -- disabled people (as well as the general public) end up thinking within the binary system. You're either disabled, or you're not.

About a week ago, WheelchairDancer responded to an article she'd read in the NYT, written by someone with troubling health issues, declining physical abilities and an illusive diagnosis. While noting the similarities in the Times story and her own, WCD wrote:

The frightening loss of function continues. I do use a wheelchair, but I didn't END UP there. I embrace my chair as a freeing pair of legs. My condition has not stabilized. I try to walk as little as possible; it's painful and awkward. Walking is reserved for ever shorter distances only. I am being fitted with braces, but we are still trying to figure out which ones are best.

The above caused the disagreement I'm writing about here, though WCD went on in that same post to say:

I go to doctors trying to find out what is "wrong with me." I feel like a puppy coming to a human for food that keeps getting kicked and slapped, but keeps coming back because it has a misplaced faith in human goodness. Why do I do this to myself?

And why do I believe I need a diagnosis? What good would a diagnosis do me emotionally? Since they are already treating symptoms, what good would a diagnosis do me physically? Can there be a cure without diagnosis?

I suspect WCD wrote that post with an exhilaration and relief to see her story mirrored by someone else's. A lack of diagnosis can make a person extremely eager to find connections in others' experiences. I know myself that these connections can make you feel better, safer, less alone. And they can offer hope.

Al Masters of Crip Revolution responded with what might seem like a benign comment:

WCD, Let me make sure I understand...You are disabled to a point that you need a wc, yet do not know why. It seems like the wc is so much a part of your being. Dance, etc. Could you live your daily life without a wc if it was necessary? Maybe I have missed something reading your blog for a long time.

However, it struck a nerve for WCD, and her next post revealed her inner anxiety:

I KNEW it. I KNEW it. I KNEW I should not have posted yesterday's post. All my self-doubt alarms are going off...

What I hear is:

You aren't truly disabled. You're faking. And, moreover, you have deceived everyone who reads your blog.

I know. He didn't write that. But I hear that. So, let me speak to that weird combination of his/my concerns.

At no point in my blog have I denied that I can walk.

What follows is both her defense of her status as a wheelchair user and some deeply eloquent ruminations on the emotional process of living with a mysterious but progressive physical condition. What she writes resonates strongly for me.

The rest of this disagreement, if it was indeed with Masters, played out privately. But WCD's third post on the topic announces that someone(s) finds enough fault with her blogging as a wheelchair user to notify her that she's off their reading list:

I feel like I have laid my very self very bare. I really appreciate the words of support from all of you.

To those you who have let me know by email that they won't be reading any more, thank you for reading -- I guess this is kind of useless because you won't see it. I am sorry you find me not suited to your notions of disabled community any more. I have enjoyed our ethereal contact.

I wasn't aware, myself, that WheelchairDancer could walk, and I'll admit it surprised me. But I think my belief that she only travels by chair was my assumption (and sloppy reading skills) rather than any omission or misdirection by her. The dominant cultural narrative about wheelchair users dramatizes impairment as a sudden and total injury, not an on-going negotiation between energy and ability.

Are you truly disabled if you can walk, but choose to save your energy for something other than the journey from place to place? What if you use a scooter because you're overweight? What if you're overweight and have arthritis? A heart condition? What if you're getting over a bad cold and borrow a scooter at the mall because of residual fatigue? What if WCD's use of the wheelchair remains unchanged but she gets an official diagnosis? What makes wheeling legitimate?

This question of legitimacy comes up publicly. Last year's Ms. Wheelchair Wisconsin had her tiara yanked away when she was seen ambulating in the local paper. Michael J. Fox's true impairments have been widely debated just recently. Stories about actual fakers often make the news.

Legitimacy implies integrity, but the problem is that diagnosis implies legitimacy. Also, full disclosure is demanded since disabled bodies are treated as public property to be stared at and judged. These social conditions to claiming identity isolate and, ironically, disable too.

______________________________________________

*"Ranking" here refers to favorable treatment in the same way that attractive people have advantages less attractive people don't. Generally, men have more social power than women, tall people have more power than short, etc. It's not a literal ranking so much as a class system.

Gallaudet Board ousts Fernandez

It seems the current stand-off is over. Check out Ragged Edge for the details and links to deaf bloggers on the topic.

Saturday at The Gimp Compound

This guy just visited the suet feeder in the back yard. He's a pileated woodpecker and he's huge -- about 15". Just him today, though sometimes he comes with his mate. The suet feeder hangs on an old oak tree at the edge of the deck outside the kitchen table window, so he's less than 20 feet away.

He's kinda stupid, and utterly paranoid, and a complete delight to see. Seriously, when's the last time you saw a huge wild bird up close? It's thrilling.

The Gimp Compound is part of a neighborhood built in an old (now mostly decimated) oak grove, or a lightning hazard, really. I suppose he lives at the top of one of these trees, though it's unusual for them to take a home so close to people.

I do a lot of bird-watching from the kitchen table, especially this past year because the vent makes me somewhat less mobile while at home. Bird-watching is a very underrated activity. For winter, there's five sources of food near the window here, plus the heated bird bath. This includes one little feeder six inches from the window, the suet feeder, a peanut feeder, and an elaborate platform towering 25 feet off the ground that holds sunflower seeds. That last was a manly victory over the squirrels and is restocked with use of a pulley. There's a hand-welded squirrel guard halfway up the post courtesy of my uncle, and the last branch any squirrel successfully jumped to the feeder from was long ago sawn away. Squirrel-foiling around here is a family affair.

The purple finches sometimes decide to have a bath party and take turns splashing in the bird bath, splattering the nearby porch window and driving the cat nuts. They like to talk while they eat, but if a bird they don't know joins them they quiet down and keep their thoughts to themselves. The chickadees swoop in and look cute. The nuthatches do everything upside down, which often makes me laugh. The juncos prefer to forage under the feeders on the ground. The bluejays are stunning and bossy.

All the woodpeckers -- the downies and the hairies and the flickers -- are quirky and cautious and spend lots of time looking around sideways before getting to the suet. There's one male flicker who keeps trying to use the finch feeder but his feet are built wrong so he's very awkward at that. It irritates the finches to have him clamoring around, I think. The cardinals are loners and don't like the finch flocks, so they come when the lunch crowd is gone, though I saw two bright males battling for territory in the neighbor's trees this morning.

And the squirrels. Yesterday's entertainment was a squirrel trying to get to the peanuts hanging in a mesh cylinder under the eaves. He couldn't figure it out, but one day soon he'll be frustrated enough to try a flying leap from the tree. After he finds a successful route to the peanuts, they will be moved and we'll start the challenge again.

But Mr. Pileated! Seriously. Thrilling. Makes me want to wander around the house going "Ha-ha-ha-HA-ha!"

This is what he sounds like outside of cartoonland.

Saturday Slumgullion #16

Today's linkfest is a fun luxury for me, since I can collect the blog posts no one submitted to the Disability Carnival #2 but are too good to not plug while they're fresh and juicy:

• Lance Mannion: Resenting the handicapped parking spaces -- Mannion on rich white guys, Limbaugh, and those who hate disabled people. This link really belongs below in my post about Michael J. Fox, but I found it too late. Via Planet of the Blind

• From NPR: Blogs Capture, Amplify Gallaudet Protest -- Offered both in audio and written transcript, NPR's Joseph Shapiro discusses how both sides in the Gallaudet protest of 2006 are using blogs to share info and garner support.

• The Blind Bookworm Blog: So I'm not the only one -- Kestrell unpacks the language of a recent Guardian article on blind British politician David Blunkett. Also check out her 13 Days of Halloween, which is on-going.

• Special Education Law Blog: File and Win? -- Charles Fox critiques the New York Magazine article "The Autism Clause" which he says grossly oversimplifies the situation of parents who sue for their childrens' educations.
  

• Gordon's D-Zone: Too Blind to See? -- Gordon Cardona has been blind and now he can see, yet he talks about the quality of his life before and after and says some interesting things.

• Allison Kaftan: I Want My Life Back -- Allison Kaftan writes that she wants the Gallaudet protest to be over and life to be normal again.

• AmpuTeeHee: ... and so this is the day when things will get really interesting -- The AmpuT tells of the imminent loss of her much-needed rental wheelchair and also, in a most excellent follow-up, how things did get interesting.

• The Meanderings of a Politically Incorrect Crip: If It's All Right With You -- Charles Dawson meanders eloquently about empowerment and, eventually, disability.

Michael J. Fox and his political ads

It's been the topic of discussion everywhere this past week. Michael J. Fox's ads for three Democratic candidates aired supporting them because of their support for embryonic stem cell research. Rush Limbaugh accused Fox of faking and exaggerating the symptoms of his Parkinson's disease for emotional effect. Pundits like Keith Olbermann responded to the hoopla.

And bloggers, too, of course.

At Shakespeare's Sister, Zack Handlen writes:

To whit: they’re picking on the handicapped kids.

Seriously, what the fuck is this shit? At this point in most novels, a reader would start rolling his or her eyes at the astonishing absurdities in play. It’s not enough that they’re responsible for thousands of deaths, not enough that they’ve eroded our civil liberties to the point where I feel I should ask for permission every time I use the toilet in my own apartment- they’re now so enthralled in their own pitiless mechanisms that they actually think accusing a sufferer of a major illness of “faking” is a well-considered, do-able strategy. What's next, driving by cemeteries and screaming "POSERS!!!" at the graves?

I'm incredulous too, but the rhetoric on all sides of this discussion feels uncomfortable to me, ambivalent as I am about cures. Handlen (above) follows a tack I wish I wouldn't see. He implies that attacking Fox -- "the handicapped kids" -- is one step away from accusing dead people of faking it. It makes for a dramatic and amusing comeback, but it doesn't say much about society's perception of people who are ill or disabled. Practically dead. Absurdity is often best responded to with absurdity, but this particular comparison isn't original and speaks to the general societal belief that Fox and people like him are, indeed, helpless, hopeless victims.

At Norwegianity, Mark Gisleson says:

It should also be noted that the actor's Michael J. Fox Foundation (MJFF) for Parkinson Research has granted $74 million to Parkinson's researchers over the past ten years.

Fox isn't doing [TV show] Boston Public out of ego, he's doing it to make still more money so he can invest more into finding a cure for those who are cursed with this affliction, even though Fox knows no cure will be developed in time to help him.

In other words, Fox is working hard raising cash and fighting for the freedom of scientific research that doesn't serve his personal interests to the degree critics have claimed. As Gisleson says, most likely it is true that any cure of Parkinson's would come too late for Fox, though I also suspect he maintains some hope for himself. Yet this is an important point to make when others accuse the actor of self-interest -- what an original crime that is!

Amanda Marcotte at Pandagon says:

While no Republicans to date have explained exactly why their right to win elections is so great that it trumps things like noting their slivering evil in public, this premise is behind all arguments against Michael J. Fox’s ad supporting Claire McCaskill because of her stance on stem cell research. I keep seeing variations on this quote from Ann Coulter: “(T)he Democrats hit on an ingenious strategy: They would choose only messengers whom we’re not allowed to reply to.”

Is it wrong to be amused by and love the term "slithering evil" here?

Marcotte expresses the complexity of the situation well, in my opinion. She gives Fox the credit of his own agency while noting the weird problem some Republican critics have with their malevolent tactics being thwarted by the stereotypical view of ill and disabled people as sufferers and victims. Those meanies! Pricked by their consciences finally? Maybe, or by social mores. Too bad it's at the expense of the image of disabled people again.

In an interview with Katie Couric, responding to Limbaugh's comments, Fox calmly states:

Well, first thing, [Limbaugh] used the word victim, and in another occasion, I heard him use the word "pitiable." And I don’t understand, nobody in this position wants pity. We don’t want pity. I could give a damn about Rush Limbaugh’s pity or anyone else’s pity. I'm not a victim.

An excellent, excellent response. I remain uncomfortable with emotional pleas for help, which Fox's ads did have a flavor of, but that's partially my baggage in needing to vehemently reject the victim status given disabled folk. I'm glad Fox spoke (and continues to speak) for himself as well as the cause of stem cell research generally, and I'm satisfied with the way he faced the camera and implicitly said, "This is me. That shock you're feeling at seeing me? That's what this is all about. Don't turn your back on the reality for some moral ideal."

Other crip bloggers on Fox, Limbaugh and the stem cell campaign ads:

Zephyr

Al Masters

Penny Richards

Stephen Kuusisto

Mark Siegel

Things that crack me up, #13

Visual description: A very large white man in blue jeans, a button-down shirt and a panama hat sits outdoors sleeping in his power wheelchair. He must weigh 300-plus pounds and is facing the camera with his legs comfortably spread so that his big belly looks somewhat comical. Just behind him is the standard blue "Handicapped Parking" sign.

Garry Trudeau cartooning disability

I think I just made up a word there, but last Sunday's Washington Post did a rare in-depth feature story on Doonesbury cartoonist Garry Trudeau, and because of his Iraqi-war coverage through the character of B.D., disability is present in his work.

While Trudeau's certainly covered war in his cartoon strip before, using a major character like B.D. to show the experience of a National Guardsman who is shipped to Iraq, loses a leg to a bomb and comes home to deal with both adjustment to life as an amputee and post traumatic stress creates a new level of comic-reading awareness to the perils of war. And the experiences of permanent disability.

Approaching his cartooning like a journalist, Trudeau has learned much from injured veterans and the Post article begins by explaining how much more crip savvy Trudeau is than reporter Gene Weingarten who is writing about him:

It's hard to know what to say to a grievously injured person, and it's easy to be wrong . You could do what I did, for example. Scrounging for the positive, I cheerfully informed a young man who had lost both legs and his left forearm that at least he's lucky he's a righty. Then he wordlessly showed me his right hand, which is missing fingertips and has limited motion -- an articulated claw. That shut things right up, for both of us, and it would have stayed that way, except the cartoonist showed up.

Garry Trudeau, the creator of "Doonesbury," hunkered right down in front of the soldier, eye to eye, introduced himself and proceeded to ignore every single diplomatic nicety.

"So, when were you hit?" he asked.

Trudeau, who successfully dodged the Vietnam draft with a medical dispensation, proves to have some psychological understanding of injured vets as he explores B.D.'s PTSD and attempts to fit in again with his cartoon family. This understanding comes from having met and really listened to this new generation of injured soldiers:

So when the new invitation came from the Pentagon -- essentially, carte blanche to visit injured vets -- the investigative cartoonist leapt at it, not sure what he would find.

The very first person he spoke to was a 27-year-old MP named Danielle Green. She had been a college basketball star, a left-handed point guard at Notre Dame. Green had just lost that hand in Iraq. She'd been on the roof of a police station, behind sandbags, trying to defend it from enemy fire, when she took a direct hit from a rocket-propelled grenade.

"This was an elite athlete, and she'd lost her whole professional identity," Trudeau said, "but that's not what she wanted to talk about. What she wanted to talk about was how her buddies carried her down, put her on the hood of a Humvee, where they stopped the bleeding, then went back up to the roof, against orders, and found her hand buried under sandbags. They took off her wedding ring and gave it to her. She's telling me this with a million-dollar smile. This was not about bitterness or loss. It was about gratitude."

Interestingly, Trudeau's wife, former morning news anchor Jane Pauley, links her husband's recent coverage of B.D.'s mental illness to her own public struggle with bi-polar disorder:

Pauley thinks the story of B.D. has been something special, the best work Trudeau has ever done. And then she says:

"I don't think he's consciously aware that it has anything to do with me."

With . . . her?

Pauley smiles. "Garry's mind is very compartmentalized. The department doing the strip in his brain is not directly connected to the husband part, but . . ."

Pauley takes a forkful of scrambled eggs.

". . . it defies credulity that on some level it is not present in his work. What is he writing about, really? He's writing about mental illness, and how it's possible to find a way out of it, with help. It's very hopeful."

The truth and hope Trudeau's fictional characters present is part of what the best of art can offer, and though I don't know the particular experience of losing a limb myself, he does seem to present the some truths about disability. And he shows them with a sort of humor that rings true as well.

Disability Blog Carnival #2!

Welcome to the second Disability Blog Carnival! Though this incarnation of the event is more petite than the first showing at DS,TU, I'm excited to present an impressive variety of topics from people who relate to the issue of disability in many different ways.

I offered the theme of "the cure" as an idea for entries and we're rewarded below with a range of posts that reveal that opinions differ, inform, change, and creatively interpret what living fully with a disability means. Prevention, prenatal screening and eugenics are intertwined with the notion of "the cure," sometimes inextricably, in the sense that they cure the world of new disabled people, and several people wrote about disability from this perspective. Others looked at being cured on a distinctly personal level, imagining the specifics of what they would wish for and what "the cure" would change about their daily lives. Also, "the cure" is sometimes fake or illusive, it presents new dangers or challenges to think beyond societal obsessions with bodily perfection and health as definitions for a fruitful life.

While some disabled people dream desperately of a cure, some eschew any need of one, and others balance both ideas together at once, there is no doubt that living with a disability is a learning experience. The learning curve and uniqueness of each person's journey is a second theme here, reminding us that every day can be an adventure (sometimes an absurd one) when society and the world are not really built for you.

Attitude is another theme many bloggers chose to cover -- both ableist societal attitudes and their outspoken responses to them. While "nothing about us without us" has been the rallying cry for disability rights worldwide, parents and teachers of disabled children find the need to advocate and express some righteous anger for the sake of those they care for, and they're represented here too. Meanwhile, disabled adults are speaking up for basic respect and for their human rights.

And so, the carnival. Images are mostly of various medicinal, sometimes mysterious, remedies and "cures" of the past. The images themselves were found on a variety of sites selling antique curiosities.


The Cure

Thus Spake Zuska: Too Much Pink? or, What Should I Be Doing? Zuska looks at the commodification of breast cancer and Audre Lorde's "warrior" writings. "The Race for the Cure" of breast cancer presents complex issues of fighting a deadly illness, accepting disfigurement or plastic surgery for "normalization" and the commercial, economic interests in this public but very personal cause.

Processing in Parts: Changing Into Versus Being. Zilari ponders prenatal diagnosis and "prevention" and the difference between changing into someone with a certain condition and always having been that someone.

Whose Planet Is It Anyway?: Perfect Irony. Abfh examines eugenic thought and how following it would impact the world.

Diary of a Goldfish: Prevention Better than the Cure? #2. Goldfish writes about prenatal screening and its effectiveness in preventing disability in society when being born "normal" does not guarantee not being disabled.

Growing Up With A Disability: To Cure or Not to Cure, That is the Question. David discusses the prospect of cure with Ashley, a woman with a learning disability.

Ballastexistenz: Hey, Watch It, That's Attached! Amanda takes a detailed look at what "the cure" would change about her entire body -- and life.

Arthritic Young Thing: It's Not Just Me. Zephyr examines the complex journey of her disability experience, involving denial, expectation and hope of cure, and the bittersweet relief of acceptance.

Thou Shall Not Suck: Hope Matters. Unholy Moses adds to his previous post about Michael J. Fox's stumping for pro-embryonic stem cell research candidates by noting he has a personal stake in the issue and that the scientific freedom to explore ESC provides much-needed hope.

Diabetes Mine: Pssst -- Diabetes Cures for Cheap! (Gotcha!!) Amy Tenderich reminds us that not every treatment or cure offered is real. Some are scams and some can be dangerous.

Pedestrian Hostile: Glass Helmet. Jennifer Justice recalls how a surgical procedure meant to fix her left her worse off than she was before.

Planet for the Blind: On Being Well. Stephen Kuusisto shares a memory of a morning with Mia Farrow and some of her adopted disabled children that illuminates the difference between being cured and being well.


The Learning Curve

Temporal Island: Blind Cricket. Deanne describes her first try at blind cricket and looks ahead to the prospect of improving her game.

Chair on Wheels: 20 Things I Learned in Portland. Kevin presents a list form of his adventures on a recent trip to a conference on rural independent living, including an encounter with an aggressively affectionate drunk woman.

Arthritic Young Thing:The Dance of Yesterday. Zephyr lives in a body with chronic pain and the need for cautious movement, but yearns to dance like she used to.

Ryn Tales: Handicap Placards and New Car Purchase in Summer's Heat. Kathryn Stanley talks about the bureaucratic complications to getting that little disable access placard for a new car.

But You Don't Look Sick: Watch Your Meds. Karen Brauer cautions about medication theft, particular for people with chronic conditions where their medications have high street value.


Attitude

A Letter to My Children: Step Away, Other Mother, Or I Shall Sic My Worms on You. Lisa Ferris writes about a Mommy Drive-By on the playground where her entire right to parent is challenged.

Terrible Palsy: Special Needs Playgroup. Mom of Moo hears another mother's ugly tale of ableism by a pediatrician at the hospital.

Postcards from Holland: They. Another Mom, Apostrophe S, finds that an older relative can't accept or relate to her child.

The Short Bus Queen: Miss B. Stirs the Pot a Little Bit More. Special Ed teacher Miss B. speaks up for a former student she learns is being bullied at a different school.

The Life and Times of Emma: Disability Questions. Wheelchair Princess takes on ten questions about her life with cerebral palsy. The first is essentially about "the cure."

Fey and Strange: Adults Acting Like Children. Fey Stranger brings the anger for parents of small children that, well, do all sorts of things to make life difficult for wheelchair users.

Crip Revolution: Damn A Baby Boomer. Al Masters rants about aging boomers "discovering" what's wrong with health care and other aspects of society PWDs have been talking about for years.

One Can Dream: And Yet, I Am Not Free. Ramona Harvey tells of the troublesome leadership of the state independent living council in Indiana (ICOIL), where she serves as secretary yet finds she is not free to speak her mind at council meetings. (Kevin of Chair On Wheels provides a backup account complete with numerous corroborating links.)

***

There you have it! Thanks to all who submitted their own writing or nominated someone else's work, and thanks to Penny Richards for beginning this carnival thing.

The third Disability Blog Carnival will be on Thursday, November 9 (submission deadline Monday, November 6) at David Gayes' Growing Up With A Disability. Entries can be sent in here, to the carnival site, or through email if necessary.

Things that crack me up, #12

Visual description: A variation of the international symbol of disability access, painted on the ground to indicate a disabled access parking space. The stick figure in the wheelchair is not sitting upright, but leaning back in her chair.

Caption from the original, taken and uploaded by Andrew Anker at Mobile Andrew: This spot is apparently reserved for very relaxed handicapped people.

Odd-looking and uppity

Harriet McBryde Johnson apparently spoke at some big event in Michigan earlier this fall. As usual, she reportedly had some great things to say about disability rightish stuff. But first, Sharon Emory, the writer of this article has to make clear how twisty and gimpy and short Johnson is:

Watch Harriet McBryde Johnson for a while, and she starts turning your concept of human height on its head.

The "fearless voice for equality and freedom'' -- as she was introduced last month at the 25th anniversary gala for Michigan Protection & Advocacy Service Inc. -- uses a body so molded by neuromuscular disease that it nearly folds over on itself in her motorized wheelchair. "A jumble of bones in a floppy bag of skin,'' is the way she describes it.

The 49-year-old South Carolina lawyer and author wears her brown hair parted down the middle in a braid that hangs over her left shoulder and immediately reaches her lap. Just below are her black-slipper-shod feet, which point downward from the wheelchair footrests, seemingly ready for a pirouette at any moment.

Rising barely higher than the back of her wheelchair, her body exists on a horizontal rather than vertical plane. And that kind of mind-expanding experience is just for starters.

Once she opens her mouth, which she notably has no problem doing, you're likely to get blown back in your chair if you're the sensitive type.

The rest of the article gets down to the business of crip rights -- or rather, human rights, since Johnson challenges her audience (and evidently the reporter) to think in terms of providing for everyone instead of creating special programs for the disabled:

"Why not aspire to a world where all students have a right to a free and accessible education, where everyone can have useful work at a living wage?"

Society has no idea what to do with disability beyond opting to take care of it, hide it, lock it up, let it die "or put it on a pedestal and call it inspiration,'' she says ruefully, all of which involve "setting us apart from the human community.''

Johnson always, always rocks.

But look back at that part about her opening her mouth:

Once she opens her mouth, which she notably has no problem doing, you're likely to get blown back in your chair if you're the sensitive type.

What exactly does this mean? Why is it notable that she has no problem opening her mouth? Is it a reference to ability or agency? Does it express approval or is it critical? What about Johnson's message will shock the sensitive?

The vivid description of Johnson's body and its abnormalities is the visual set-up for the news that she has something original and forceful to say. The piece is written so that her body and her message cannot be easily separated, and are, in fact, the message together.

The headline of this column reads "When special isn't good enough." And the beginning paragraphs emphasize how different, interesting, challenging -- special -- Johnson appears physically. "Opens her mouth" is a particularly physical way to say that she "speaks" and it suggests something crude about the activity because it doesn't refer to the content of her speech but instead to her body and what it is (and isn't?) capable of.

Why mention Johnson has no problem opening her mouth? The only possible reads I can imagine are references either to her physical capability of uttering words, or her outspokeness. If it's the latter, again it's a particularly crude and physical way to say she speaks her mind. Her actions are described as if her disabled body is expressing itself rather than her intellect, and that this is somehow unattractive, inappropriate -- uppity.

Toward the end of the article, it's noted that Johnson publicly debated philosopher Peter Singer:

Johnson, who specializes in disability rights law, attained what she calls "weird, semi-celebrity status" when she took on noted philosopher and Princeton University professor Peter Singer in 2001.

Basing his argument on preference-utilitarian principles, Singer made his case for allowing parents to kill severely disabled babies so that, theoretically, as many people as possible could fulfill as many of their preferred choices as possible. Having lived nearly five decades with a congenital disease, Johnson took umbrage at his line of thinking.

It's not mentioned that Johnson's semi-celebrity occured because her richly descriptive and fascinating account of this debate was a cover story for The New York Times Sunday magazine and later a chapter in her book, To Old To Die Young. Nor is Johnson's side of that debate explained, though Singer's specific philosophical approach is described. It's only noted that Johnson "took umbrage" that people like her should be allowed to be killed at birth.

Johnson's message for her speech in Michigan is abbreviated into the article's title "When special isn't good enough." This reads together with the focus on Johnson's body and the failure to show her intellect or lawyerly knowledge as products of an accomplished and perhaps radical mind. It reads as a rebuke for asking for favors -- special demands from those with special bodies.

Obviously, I don't know the intent of the reporter for this piece, but while seeming to cover the interests of disabled people she instead presents Johnson as an abnormal body that behaves in an unseemly way by opening her mouth.

I can't get Junius Wilson out of my mind

I read this at Disability Studies, Temple U. a few days ago and can't stop thinking about old Junius Wilson.

A 1994 NYT article says this:

Black and deaf, Junius Wilson was 28 years old when he was jailed, charged with assault with intent to rape. He was declared insane and sent to North Carolina's mental hospital for blacks. Then he was castrated.

That was in 1925. Decades later, the charges were dropped, but Mr. Wilson remained in a locked ward.

Now 96, Mr. Wilson was finally moved on Friday into his first real home in 68 years.

"Decades later." The charges were dropped five decades later. Yet the institution kept him locked up for almost two decades more. What caused a reassessment of his case when he was in his 70s?

Is Junius Wilson still alive? (Unlikely, I suppose, since he'd be about 108 now.) How long did he live in freedom? Was it freedom to him? Were his last years happy and did he get to experience some of the things he was so long denied? Did he know friendship or love or even just a good conversation during all those years locked up? What happened to his family?

I'll have to wait for the book, by Susan Birch and Hannah Joyner. But as Dis Hum announces, Susan Burch will be speaking about Wilson in Columbus, OH, in mid-November. Check Penny's post for the details.

Sadly, Wilson's problems as a deaf person with the criminal justice system are neither rare nor something that just happened decades ago. I don't have access to the entire article, but an abstract for a paper on "Obstacles Faced by Deaf People in the Criminal Justice System" by Vernon and Miller reports:

Deaf people, especially those who are not well educated, are at risk for serious injustices when they enter the criminal justice system. The present study describes these risks at all stages of the legal process, including arrest, trial, probation, prison, and parole. These dangers are greatest for those who are poorly educated, read at a fourth-grade level or lower, have poor communication skills (American Sign Language and English), and lack awareness of their legal rights. Primitive personality disorder (PPD) is the term mental health professionals use to describe this set of characteristics. The risks that the segment of the deaf population with PPD faces when its members run afoul of the law are described, a case history provided, and some relevant legal and interpreting issues are discussed. A case is made for applying the concept of linguistic incompetence to deaf individuals with PPD.

Not that Wilson was necessarily poorly educated -- he may or may not have been -- but he was also a young black man in North Carolina during Jim Crow.

I can't stop thinking about him.

Comparing niqab-wearing women to disability

Since the story of Aishah Azmi, the niqab-wearing teaching assistant suspended from her job, broke, former British foreign secretary Jack Straw has been busy making an ass of himself. Or a bigger ass, I suppose, if you're a Muslim member of his constituency. Straw is currently the Leader of the House of Commons and Lord Privy Seal (that last sounds like a bullshit title, doesn't it), and has been handing out opinions about niqab-wearing women.

In this week's The Sunday Times, UK, India Knight writes an opinion about Straw and the niqab called "Muslims are the new Jews." While Knight believes the request that Azmi remove her niqab while actively engaged in teaching English to children is reasonable, the fallout of religious bigotry surrounding the case deeply offends her:

...What we are witnessing is religious bigotry of the most shameful kind. The words used in the context of the veil debate —-- "strange", "“spooky", "“weird", "“offensive", "“creepy", "“wrong", "“evil-looking"”, "“sinister" -- are not words a civilised society should use about other human beings.

People are made uncomfortable by all sorts of things: I find shaven-headed, tattooed men unpleasant, especially if they'’re drunk. I'm not mad keen on hooded gangs of youths at three in the morning. Facial piercings hurt my eyes....

But we all need to coexist peaceably. The fact that I find the man in Camden market with bolts through his face, or the Orthodox woman dressed in a drab sack and wearing a bad wig, as "“weird" --— weirder, actually --— than a woman dressed in black with only her eyes showing is neither here nor there.

I don'’t expect they think much of me, either. But I would have to be deranged, or consumed with hatred, to attribute random demerits to them on the basis of their physical appearance. A lot of people are made uncomfortable by disability, for instance -- because they live in a civilised society they don'’t say it.

Imagine if Straw had said, "There are an awful lot of autistic people in my constituency. I tell them to look me right in the eye, otherwise I can'’t help them."” Would there not be an outcry? I'’m sorry to equate Islam with disability, but I am doing so because an observant person'’s religion is as integral a part of them as their genetic make-up.

I'm fascinated both by the way disability keeps coming up as an analogy with this topic, and by the apologies or outrage that seem to follow automatically from that. In the blogging I wrote about in my last post, the outrage was from one commenter (at PunkAssBlog) to another in comparing the choice of wearing the niqab to the lack of choice involved in a severely disabled woman using a wheelchair. In her opinion piece, Knight regrets the need to "equate Islam with disability." The discomfort runs in both directions, and the implication is that there is something unseemly in the comparison.

What's unseemly is pity, though it's presence is not recognized. It's viewed as unseemly to equate a regular "normal" difference like religious clothing with something as pitiful as a disability. Religious diversity is expected and comprehensible despite the bigotry it brings out. Disability is shameful and pitiable, and equating something good and acceptable about human nature with it is something to apologize for.

For example, Sunrunner has responded to my last post with quite a bit of interesting information about her muslim background and Islamic culture generally. But she also notes that comparison to disability would generally be found insulting to muslim women because of the stigma attached to disability.

I find the comparison between niqab-wearing women and disabled people to be incredibly apt, despite other people's clear discomfort with it. In direct public interaction, both a niqab and certain impairments may require other people to broaden their mind and accommodate the difference. And for the niqab-wearer or the person with the impairment, that difference about their physical being may make interacting with the rest of the world more difficult -- disabling.

Feminists have long noted that various styles of dress for women tend to inhibit movement. Along with the niqab, high heels and short skirts restrict complete physical freedom of movement. Sure, a person can adjust and very skillfully adapt to restrictive clothing, but that doesn't negate the effect. Choice, company dress code or coercion also do not negate the impairing effect of wearing something more physically restrictive than other (less, looser, different) clothing.

And regardless of political opinions about the niqab, it can't be denied that its purpose is to create a barrier between the wearer and other people. Muslim Brits interviewed for the BBC generally acknowledge the niqab requires some social adjustment, and many women who have tried it likewise acknowledge it can put limitations on the wearer.

So, despite what seems to be a general distaste and discomfort with the comparison between niqab-wearing women and disability, I find it interesting and possibly instructive about social interactions with people of any kind who come across as "different" or "challenging."

A very long post on niqab-wearing teachers, feminism and disability

There's some fascinating discussion going on at some feminist blogs about the case of Aishah Azmi, a muslim woman in Britain who teaches at a London school while wearing the niqab. School officials have reportedly asked her to remove the face mask while teaching the children because some children have complained of not understanding her clearly. Azmi is a bilingual assistant teacher and many of these children are learning English as a second language.

Feminists seem to be divided on the issue of dress for muslim women generally, with some believing that coverings linked to the muslim faith are always misogynist and others believing that any mandate of women's dress that controls how much of bodies are covered or revealed is the problem, including a country or employer that requires female muslims to not wear a veil. The former claim cultural relativism of the latter and the latter claim insensitivity to the choices of nonwestern or nonwhite women of the former. Well, in a nutshell. There's been much volatile and bitter blogging around the same old issue of white feminists not including the concerns, cultures and realities of women of color in their politics lately as well.

I want to look at this specific case of Aishah Azmi and the discussion on some feminist blogs where disability has come up in more than one context.

At Feministe, where author Jill supports Azmi, commenter Sunrunner says:

I am sorry, but I am going to have to disagree with this. I would not want my child in a class that is taught by a teacher whose face cannot be seen. Think about it–how is a child supposed to feel? Have you ever had an extended conversation with someone wearing a niqab? It is much harder to pick up on social cues . . . is she happy or unhappy with what I am saying? This sort of visual feedback is extremely important to children.

Jill responds:

Just out of curiosity, would you oppose your child being taught by someone with a facial deformity?

Meanwhile, Gordon K notes:

...Access to facial expression and all of the facial cues that we call “lip reading” is extremely important in learning a language, particularly for students who are deaf, hard of hearing, or apraxic (and many of these students are mainstreamed). So is it appropriate to take a job teaching such a class if you are going to wear a veil?

In a reference to the ADA, Sally says:

I’m wondering if it would be useful to apply the “reasonable accomodation” standard that’s used in the U.S. with regards to disabled people. If your religious practice seriously affects your fundamental ability to do your job, that’s a problem. If it merely makes people uncomfortable or requires some extra effort from your employer, then religious freedom trumps.

Most commenters in this thread at Feministe believe discrimination of some kind (religion, gender) is at play regardless of their opinion on whether a teacher in Azmi's position should be fully veiled. This includes Leederick, who says:

Wearing a veil hampers her ability to do her job. It makes it particularly difficult for children who are hard of hearing. Her job’s teaching children, and I do think interaction and being able to see someone’s face is very important there.

Meanwhile, Sunrunner responds to Jill:

Of course I would not object to my child being taught by a woman with a facial deformity! Anyway, I would assume that if a person is able to speak (necessary for teaching and caring for children) she has the capacity for some kind of facial expression. It is not at all the same thing as a blank, black mask.

In fact, this assumption is not correct. While I have some "capacity" for facial expression, many of my facial muscles were the first affected by my neuromuscular disease and the dimple I had in my left cheek hasn't been seen for about 30 years. If you run into it, let me know. But anyone who knows me personally (except those who have known me exclusively in the past year) can tell you that some people with very limited capacity for facial expressions rarely let other people get a word in edgewise. Even just communicating on paper lately, I rarely shut up. Anyway, while facial muscles do effect pronunication and clarity, inability to use most of them has no impact on the amount of speech a person can produce.

Interestingly though, I have been accused of having a blank mask of a face by someone angry with me in a conversation we were holding. "Icy demeanor" was part of the accusation and it was used to undermine my point-of-view (which was unrelated to disability). My language was understood perfectly. The emotional content of my argument was, perhaps, not understood. So, no facial deformity here, just a "blank... mask."

Discussion at Creative Destruction includes a debate about whether or not seeing a teacher's mouth is necessary for learning a language. It's noted that blind people manage to acquire speech without sight. And there's the comment that blind people have special powers in their use of their other senses, but children should be afforded every sense possible to learn. Much like the ironic invisibility of deaf muslim children or devout muslim women who use sign language -- which I presume exist and manage to communicate somewhere in this wide world -- blind children don't come up in this discussion.

Robert, whom I believe to be the "Bob Hayes" author of the CR post, says:

So as long as a teacher is only handicapping some of her students’ ability to have a successful life, it’s OK?

Language is fascinating throughout this multi-blog discussion. When I find time, I'll post about a muslim woman's ironic use of language and imagery in defense of wearing the niqab in Britain's The Sunday Times.

But Robert's comment brings us to PunkAssBlog. Post author R. Mildred writes:

If a class of 6 - 12 year olds needs to see the teachers lips to understand her ... then I assume she has the training to deal with a special ed class and when she say “the kids can understand me fine” (as she has done) we can pretty much take her word on it - and if she’s teaching deaf kids she should need to be able to sign anyway and that she wears a niqab is an incidental side note that isn’t really relevent.

I don't plan to step into the deaf politics minefield that is oralism versus sign language here, but I do want to note that not all deaf children are taught with sign language. On the other hand, R. Mildred does take it for granted that being muslim and deaf aren't mutually exclusive -- or more specifically, being a niqab-wearing woman and being familiar with deafness and sign language -- and I appreciate that.

If you aren't fascinated already, here's where I think the discussion gets riveting. Sunrunner, commenting here as well, links to a Guardian article by a non-veil-wearing muslim woman journalist who dons the niqab for 24 hours and, as expected, finds it completely oppressive.

Then, R. Mildred basically claims that a teacher wearing a niqab could provide children with a superior education to those who learn language while relying on the ability to see their teacher's full face:

The niqab doesn’t even hide as much facial information as people assume, it just takes a bit of familiarity to get used to reading the eyes without the landmarks.

hell, if a child learns to communicate from a woman wearing a niqab, she’s had a masterclass in reading people’s faces, give them a full face and they’ll be able to read people’s minds.

Lack is described as an asset. Sounds just a little like some disability rights arguments that impairments or inabilities have their own inherent values.

Quin says:

When I studied status in theatre class (by which I mean, the unconcious perceived status that two people feel when relating to each other– not talking about social class here– a king can play low status to a chimney sweep), I learned through experience that anything which makes it harder to read your expression enhances your perceived status in other people’s eyes. So, for instance, sunglasses naturally increase your status because people cannot see your eyes moving; they even may get the sensation that you are calmly staring straight into their eyes at all times, even if you’re really just looking everywhere at once nervously.... Anyway, I imagine a veil would probably act in a similar fashion.

"Anything?" I disagree with this statement for more than one reason, but from a perspective of my experience as it relates to not just disability but perceived difference (before I was visibly impaired in any other way) I find it to be untrue. Status comes from elsewhere than this.

Responding to Sunrunner's link of the "veil-for-a day" Guardian article, Sly Civilian says:

Gah! I’ve got really serious objections to using that narrative as an anti-veiling argument. Ask anyone in disabilities activism if it’s a good idea to put somebody in a wheelchair “for a day” to show them what it’s really like.

Temporary “adoption” of a social, physical, cultural, whatever barrier is NOT the same thing as durable inhabitance of an idenity constructed in response to that fact. The tourist has none of the knowlege, experience, support, training, or coping stratagies, and experiences “disability” in a completely artificial and unrealistic fashion. By selective appropriation or by revulsion, the tourist response almost always lacks grounding or respect.

While the author wrote of her concern of exploring her Muslim idenity in this way, I’m worried that consumption of this article as anti-veil is to miss what this experience is and isn’t. For one thing, it is NOT an accurate representation of what daily life is like for a woman wearing the niqab. Definitionally, a tourist (even one from a nearby country) is not the same as a native.

To that very last, I'll note that it's also not the same as wearing a niqab because you wish to. This slides away from the topic of Azmi and her students, but it is true that the current wisdom among disability activists is that crip-for-a-day programs might do more harm than good. Yet I believe Sunrunner misunderstands Sly Civilian's point because in response there is this:

Oh, so you are comparing veiling to being disabled?

A disability is NOT a choice, a veil is (sometimes). One chooses to wear it for a day or a month or a year or a lifetime, but one does not choose to be disabled. One simply is or is not.

Along with eventually saying she(?) agrees about disability simulations, Sunrunner adds:

Anyway, my point was that it is ludicrous to compare a woman who choose to wear a veil in a country in which it is not mandated with another woman who is confined to a motorized wheelchair due to a life threatening disabling illness. So if my anger is stupid, it is no more stupid than your stupid analogy.

Despite what Sunrunner declares, I find the comparison is being made all over the place. Azmi is declared disabled by the veil, her niqab is compared to facial deformity, her ability to communicate is debated with regard to sight, hearing and other physical ability. The ADA and "reasonable accommodation" are invoked. Words like "handicapping" are used. Some commenters address Azmi's abilities, some address the childrens' possible disabilities. Commenters relate their own various disabling learning experiences.

These Western feminist debates struggle to balance the religious and cultural freedom of muslim women with freedom from misogynist limits religion and culture make on muslim women's lives. Race is also a factor. And it's clear disability is too, though the thoughts of disabled muslim women (feminists?) are not present here. The niqab-wearing disabled women know these issues intimately and undoubtedly struggles to find balance as well. I know they're out there. But silent in -- or silenced from -- this particular online debate.

There was an anonymous non-signing deaf commenter on PunkAssBlog:

As long as disability has been introduced here, any deaf children in the classroom would be required to ask her to remove her veil if they wanted to understand her, or be removed to another classroom if she refused. And before any of you pile on me, *I* was that non signing deaf child in the class who constantly had to teach her teachers not to face the blackboard, to look at us, etc. To this day I still have to educate my teachers (I continue taking classes in all kinds of things.) Access to the visual expression on someone’s face is critically important for me and other non signing deaf. It is not a choice. It is not “some whitey” making glib objections. It’s a fight against ableism or disablism (pick your country).

I don't know if "anonymous" was truly heard. Neither R. Mildred or Jill, the original posters at PunkAss and Feministe, respectively, have appeared to consider the intersection of disability, though it's part of the discussion everywhere.

Five things that feminism has done for me

My friend Amanda at Life in a Suitcase tagged me for this feminist meme that is traveling around. It started because of concerns (and outrage) about funding changes by the Canadian government for Status of Women Canada (SWC), including the removal of the word "equality" from the government agency's mandate. I don't know the intricate details of all this, but the meme is certainly a good topic to think and write about.

My five things:

It provided me with a home to grow up in where my parents respected each other and nurtured everyone's dreams and goals regardless of gender.

It made my study and career choices at college free from the gender restrictions and pressures my mother experienced.

It's given me a context in which to understand my experiences with religion and my spirituality.

It's added to my interest and understanding of my experiences as a disabled woman.

It's provided me with many many warm, loving women friends, both out in the world and online. Stunningly, during my four-month hospital stay, I received snail mail and packages (as well as online prayers and support) from dozens of individual feminists all over the world -- all online friends or acquaintances that at the time I'd never met. I've since met eight of them in person. Our common concerns and experiences brought us together online and provided me with support when I needed it most. (Amanda is one of them, btw.)

Saturday Slumgullion #15

• Joseph Rainmound writes "This Democrat's Deaf" on DailyKos about changing definitions for disabled and deaf. It's more than that though, go read.


• Arrests of dozens of Gallaudet students, professors and alumni on Friday are only the latest event in the long-simmering battle at Washington, D.C.'s university for the deaf. Joseph Rainmound at DKos again, this time with a linkfest of inside opinions on the situation.


• The 7th Ouch! podcast was slated to be the last, but apparently listener protest has saved it -- so have a listen to the silly Brits. And if you haven't heard the less goofy but still informative American DisabilityNation podcast #10, the latest one features an interview with Not Dead Yet's Diane Coleman.


• Damon at Do Your Worst! thinks efforts to get mainstream TV to run a crip-savvy disability show are pointless when "mainstream" is being fragmented and undermined by technology that gives us YouTube and whatever minority groups make the effort to put out there themselves.


• Candy Harrington at Barrier Free Travels shares the thoughts of Mr. Upright-Uptight on access accommodations, though she calls him Mr. Pea Brain.


• NormEmma at YouTube offer a music video about the Euthanasia Blues -- a disability rights perspective on legalized euthanasia and physician assisted suicide. Via No Pity


• LoudGirl at The Phat Girl Speaks thinks about Rosa Parks on the bus and her own recent experience on London public transit, which while unlikely to go down in history, nevertheless has much in common with what led Parks to take her stand.


• Crutch! This is the one link in this list to visit if you have limited time -- Bint Alshamsa of My Private Casbah has Bill Shannon's amazing four-minute YouTube video and her commentary of what the man is all about.


• The Guardian reports on a new disabled and documentary version of The Full Monty called The Crippendales.


• "Disable children can be our scientists" notes a reverend in Sierra Leone.


• After 30 years of institutionalization, Chip Hill is moving to a group home near his family in Chattanooga.


• As a nod to Disability Awareness Month (yes, October), Kathi Wolfe writes for the Washington Blade about cripness and queerness all in one.


• "Running with honor" in the Washington Post presents a nondisabled woman's thoughts on participating in the Army Ten-Miler run with many young veterans wearing prosthetic legs and recent war widows.

The Carnival is coming here

The second Disability Blog Carnival will be here Thursday, October 26. Submissions are due Monday, October 23. The theme for this stop on the carnival tour is "The Cure," though any submissions about disability rights, disability culture, or personal disability experiences are welcome.

By "The Cure" I don't mean (as Penny noted) that I'm looking for posts about the fine but gloomy alternative band of the '80s. I'm refering to the issue -- or question -- that pretty much defines how people think of disability. Dan Wilkins wrote this about "the cure" while a board member of the National Spinal Cord Injury Association:

Society needs to understand that, of the nearly sixty-million belonging to this U.S. Disability Culture alone and millions more around the globe, those who dream of cures are far and away in the minority compared to those who dream of acceptance and access to all that their society and community has to offer. The majority of us with disabilities are comfortable in our skin. We see ourselves as unbroken and not in need of "fixing". We are proud of our disabilities and of the wisdom and perspective gained from the experience. The majority of us, along with our friends and family, dream of the equity and respect that comes from a community that has expanded to include and accommodate all of its people.

It is a matter of two different dreams. One dream sees the person; or more precisely, the disability as the problem. The other, more widely held dream sees society itself and the environment as the problem; with its lack of attitudinal, architectural, political and programmatic access. The former sounds logical, based upon archaic misconceptions of what life “must be like” for those living with a disability: "Of course one would want to be healed." The latter demands we, as a community, step back and take a look at the bigger picture, at how we perceive and treat people who get around or see or hear differently. It demands we take responsibility for our thoughts and actions, the baggage we carry, and for the history of exclusion and segregation. It is discrimination and it must end.

Back in 1996, David Mitchell said this at Electric Edge:

The key tension that exists in nearly all stories about disability is seen most clearly in the "cure narrative." It's a story of uneasy obliteration, for it always ends in the "loss" of the object upon which it depends: Either the disability is eradicated and surrenders its seductive interest, or it resists conforming to the narrative of its rehabilitation and the evidence of that refusal must itself be obliterated. This is what Paul Longmore means by the "cure or kill" paradigm: both get rid of disability.

Mitchell refers to "stories about disabilities," which certainly applies to literature and film but also to the stories of our individual lives and the narratives people imagine about every disabled person they see. "The cure" is the persistent human project to fix people of impairments rather than accept their lives as good enough, valuable as they are.

I don't see having a philosophical problem with the cure mindset as remotely the same thing as being against scientific discovery and medical breakthroughs, but that's frequently misunderstood. Also, I have my own questions when confronted by the crip-savvy question "If there was a cure available, would you take it?"

I want to know if this fantasy cure is for everyone or just me? Is it expensive? Is it free? Does it hurt? Will it last? Are we talking just cure, or turning back time to a post-impairment body free from general inability? Will people see me as nondisabled to the point I'll be more employable? Will taking the cure mean I lose any disability aid? Will the prejudice go away too?

And many, many more.

So, the theme "the cure" refers to the above, and I'm hoping for whatever it inspires you to write about disability. Send submissions to the carnival site or to my email at kay.fine@gmail.com with the subject line "carnival," please. Deadline Monday, October, 23.

Carnival Day

My computer is off to the shop for a hopefully brief period of time, so I may be offline for just a day or through the weekend.

In the meantime, go to Disability Studies, Temple U. where Penny Richards has the first ever Disability Blog Carnival with an amazing collection of offerings to read from an incredible variety of sources.

See you soon.

Things that crack me up, #11

A recent sitemeter check reveals a Google search for "What Paul Reeve said at the end of his famous ride?"

Possible answer: Spell my name right.

Things that crack me up, #10

Visual description: In the foreground a sign reads "wheelchair access" with an arrow pointing to the background, which looks like lumpy prairie or grassy beach. Absolutely not wheelchair accessible. Nothing manmade appears beyond the sign.

Originally uploaded at Flickr by inframel

Pickle for three, please

I met Marian the day I came to college in my week-old electric scooter, still learning how to drive it well. She was my assigned roommate in the residence hall and we were the first two female disabled students to ever room together at our university. With only a few accessible rooms, my freshman year was the first that there were enough women in wheelchairs to require two to a room to fit everyone in.

Campus housing had called me over the summer and asked if I was okay rooming with another disabled woman, apparently concerned if we'd have enough room to maneuver. I'd thought it was a stupid question -- if I wasn't okay with it, would they quick remodel another room before I arrived in two weeks? Also, the slim detail that my new roommate would also be using a wheelchair excited and startled me. I hadn't considered it before.

Marian and I were happy roommates and became close friends immediately. Our resident assistant turned out to be Anne, a disabled woman Marian had been tight with as a child at Easter Seals summer camp. Marian, pessimistic and wryly funny, and Anne, loudly hilarious and over-the-top, were a completely new experience for me. I hadn't had friends with disabilities -- let alone scooters or wheelchairs -- ever before. I revelled in the startling visual power we had when we went somewhere, lining up serially on a narrow sidewalk like a brief parade of fast go-cart Shriners or driving three (sometimes more) abreast across campus and talking and laughing like anyone else, but at our seated height.

Sophomore year, by arrangement, Marian and I shared a bathroom with Anne, and we often treated our two dorm rooms like a suite by keeping the bathroom doors open so the bathroom itself became a narrow hallway from one room to the other. While the bathroom -- just a toilet and an open area with grab bars for a shower and room for a shower chair -- was all tiled and slightly sloped to a central floor drain, there was an eight-inch ramp sloping an inch or two down outside either doorway (Anne's or ours) into the small sink/foyer area of each dorm room. The closets faced each bathroom door, so if you stood in our closet, you could look through the bathroom into Anne's closet, directly opposite.

Early one evening just after dinner, Marian and I were in our room. Marian was sitting in our small closet finding something and I was talking with her, my scooter parked in front of the closet doorway.


Anne came roaring through the bathroom into our room, laughing as she came down the little ramp. To our surprise, her Amigo scooter hit the side of my scooter and her front bumper lifted to rest on the platform of my scooter by my feet. The front wheel of her front-wheel drive was lifted off the floor.

So. Marian was trapped in the closet. I was parked in front of the closed door to the hallway, and Anne's scooter was hung up on mine. We all used our chairs full-time, so none of us was able to get out and push. We sat there surprised that three mobile adults could immobilize themselves without any of our chairs breaking down.

This was before cell phones, so we giggled when the phone rang and our answering machine clicked on. We contemplated what exactly we would shout if we decided to holler for help. Then we jokingly began conversations none of us wanted to hear and required a captive audience.

"Have you been saved by the Lord?"

"Let me tell you about my essay on Moby Dick."

"You know, my husband had a stroke recently and now he needs a wheelchair too...."

We nearly laughed ourselves sick before I managed to move my scooter back and forth enough to dislodge Anne's. It was a bit of a disappointment to be free. Suddenly the room was accessible to all of us again and we were a little less bound in common camaraderie.

It was one of the silliest, funniest moments of my life, though it doesn't translate well for the larger world. It's a crip thing, and probably rare at that. It's an example of what makes living with a particular disability a unique cultural experience. One I would never have found at home with my family.

Saturday Slumgullion #14

• A story about a disabled woman and her nurse who stuck together through Katrina and the many evacuations and relocations and complications that ensued.

• A Wal-Mart in Albany, NY, kicks service do out of store.

• A two-part newspaper feature on a transgender woman repeatedly refers to her suffering from gender dysphoria and the complex emotional and mental difficulties involved in transitioning.

• Over a year after Katrina, FEMA is reaching out to disabled evacuees to let them know they now have accessible trailers available to live in.

• The U.S. Supreme Court to consider again the Texax death penalty case of LaRoyce Lathair Smith, whose learning disability was not given to the jury as information to consider when he was sentenced.

• The remains of at least 51 people suspected to be victims of the Nazi T4 program to murder disabled persons have been found in Menden, Germany. About half were infants and children.

• A report on the victims of the Pakastani earthquake last October and how paralysis has chnged their lives:

Embarrassment is the least of 18-year-old Rozina Rehman's problems after her back was broken a year ago in the earthquake that killed 75,000 people and scarred the minds and bodies of many, many more.

The first anniversary of the quake is on Sunday, but the young woman remains too self-conscious to go back to school in a wheelchair, so she stays home with her parents.

"I am scared what people will say. I can't get out of this wheelchair now for life," says Rozina, who was dug out from the rubble of her home in Balakot, in Pakistan's North West Frontier Province, one of the towns hit hardest by the disaster.

• Redefining autism as an ability and "gift" rather than a disability.

• As Murderball opens in Japanese theaters, Mark Zupan is featured in a news story there.

Just so we're clear

These were hate crimes.

links via Echidne

Things that crack me up, #9

They're like square seaside wheelchair condoms.

Visual description: Two wheelchairs on a terrace overlooking the sea on a clear sunny day, but the wheelchairs are surrounded by box frames with clear plastic windows -- one frame is red, the other blue. The people inside are apparently enjoying the view.

Originally uploaded at Flickr by Mooganic

The saddest entourage ever

I've never seen the HBO series Entourage, but I know entourages are supposed to be cool. Hip. Impressive. They're supposed to help acquire stuff, and beautify the star, and enlarge the star's importance with their very presence.

Here at The Gimp Compound it's Parts Replacement Week. Today I went to the local clinic to have my trach swapped for a newer, less ooky one and Wednesday there will be drilling of teeth. Too bad the attendants can't be sent ahead to have their teeth drilled instead of mine. I would so go for that.

Yes, I have attendants. They're my folks and the state-paid nurses I've referred to before, and though a nurse is supposed to be here 24/7 as long as the state is paying for any care of a person with a vent, they're covering about 60% of the hours this month and my weary parents are handling the rest. Anyway, there's always someone lurking about me.

In the past I've brought my parents to many doctor's appointments -- particularly the specialists because 1) we all know the drill, 2) I feel more powerful with them there, and 3) we can remember things better if we all try together. In the hospital, especially when very helpless, it was really important they were around. I focused on not letting anyone accidentally injure or kill me, and my parents worried about other details. I don't know how anyone manages all that alone.

So. I have this nurse who goes where I go, and parents who have a knack for teamwork in the doctor-patient arena with me. All four of us went to the clinic together today for the trach change. And while there is good people-watching of all kinds there, I'm sure we are something to see. If you wandered into the nearest church lutefisk dinner and picked out two reasonably limber senior citizens and a women aged 35 or older, you'd have an idea of the utter coolness of my entourage. They carry gauze and saline. They wear comfortable shoes.

My entourage. My posse. My gang. My, uh, parents and my nurse.

No Bigger Than a Minute

Tuesday, October 3 -- that's tomorrow! -- on PBS' POV series, Steven Delano's documentary called "No Bigger Than a Minute" will air. (It's on at 10 p.m. here, check locally for the time where you are.)

From the film's synopsis:

"My name is Steven. I am 48 years old and I'm a dwarf." So begins Steven Delano's unusual new documentary, "No Bigger Than a Minute." What follows is neither an academic discourse on the life and times of America's "little people," nor a project in self-affirmation in the face of social discrimination — though the film includes healthy doses of both of these. "No Bigger Than a Minute" has tongue-in-cheek re-enactments, a music score structured after Delano's own mutated DNA sequence, short-statured Hollywood stars such as Peter Dinklage ("The Station Agent") and Meredith Eaton ("Family Law") and musicians, rappers, comedians, novelists, doctors and ordinary folk. Not to mention filmmaker Werner Herzog and an uneasy, and very funny, cameo by Randy Newman, singer-songwriter of the top ten hit, "Short People."

What really stirs this eclectic mix into potent form is Delano's own reluctant "star turn" at the film's center — a film he didn't originally envision appearing in at all. Delano's opening statement is both the culmination of one story, about what he'd learned of dwarfism after 40 years of ignoring it, and the beginning of a new story. It's this new story that thrusts him into his own film to delve into questions of humanity's treatment of difference, tensions between personal and group identities and the future evolution of these contradictions. It's here that Delano faces the most untidy dilemma of all: In the brave new world of genetic engineering, when it is conceivable that dwarfism can be bred out of human populations, is this what we want?

You may have noticed my imaginary boyfriend will be part of the film. He was on Nip/Tuck recently too, and his nanny-character made a little speech saying very disability rightish things. I do believe he could improve any seedy sexist drama he acted on. Any documentary too.

Something less creepy about former Rep. Foley

It's international news that the FBI is examining e-mails between former Republican Rep. Mark Foley and teenage Congressional pages. Democrats are calling for hearings, we're learning other Republicans knew of these e-mails for some time, and Bush denies having known anything until now (which, as usual, is either hard to believe or completely believable).

What you may not know about Foley is that he was the guy who repeatedly introduced the ADA Notification Act to the House, hoping to weaken the ADA by requiring disabled people to notify any business of noncompliance and then wait 90 days before seeking legal redress. Well, 90 days plus all this time since 1990 when the ADA was passed and businesses everywhere went on notice that they should figure out if they were meeting the standards of the law.

Kara Sheridan wrote in 2005 for Audacity magazine:

Under Foley’s sponsored act, our role as the sole enforcers of the ADA would expand even further to include properly notifying those that deny us basic access to their facility and then waiting to see what happens. It’s difficult to understand that more waiting after fifteen years is a solution to anyone’s problem. Mark Foley’s ADA Notification Act is blurred behind the mask of protecting the vulnerable people with disabilities from "shiesty lawyers" who seek to take advantage of small business owners.

This paternalistic attitude that we are somehow less capable of protecting ourselves compared to the average citizen is more evidence to Foley’s underlying principle that the burden upon small businesses to comply is more valuable to consider than our rights as equal citizens.

While he has definitely been briefed and is well practiced in using politically correct terms and carefully shying away from outright stating that he believes many ADA standards are not truly necessary and expensive trivialities, he still makes it clear with his statements in interviews with the media.

Instead of sharing the perspective of a person with a disability who has been denied access to any public place he/she wishes to go, Foley instead shares stories of those that file lawsuits against strip clubs or those that file complaints based on the difference of a few inches from the standard disabled parking place.

The Ragged Edge covered Foley's ADA Notification Act back in 2000 when Clint Eastwood helped spread disinformation at a Congressional hearing.

It's good reading, though not as juicy as the current Foley news.

A credo for support

Here's an excellent four-minute video made in memory of Tracy Latimer. It's not about Tracy Latimer, it's about disabled people in general and how to treat them. For those who need it, there's both audio and written text of the spoken words.

A video like this seems important after reading how many people commenting to my post "Is your life hard or super-hard?" by admitting they are hesitant or fearful around disabled people and aren't sure how to teach their children differently. These comments were mainly at Alas, I believe, and I don't think the people saying these things are unusual or any more ableist or self-conscious than the average person. Sad, but true.


Via The Belonging Initiative