Miss Ability lays down on the job

Back in January, I wrote about the Dutch show Miss Ability:

Miss Ability has been called the surprise hit of Dutch television in 2006, but the Times Online reported last week that the rights to the program in Britain, France, Germany and the U.S. have now been snapped up. Soon we, too, can look forward to a live beauty contest where disabled women compete in nightgowns and bathing suits, then present short video films on how they've "overcome" their physical conditions -- whatever impairments contestants have must be "visible to the eye" in order for them to compete. Viewers get to vote.

My opinion, expressed then:

This overcoming narrative -- particularly as part of a contest where the subjects must be "visibly disabled" -- is a paradoxical fiction. Each woman must look stereotypically physically disabled but prove she doesn't suffer the consequences her impairments or society create for that very visibility. Or that she doesn't mind. It goes without saying that the best woman in this contest will not discuss any mental illness or incontinence or lack of civil rights. She won't drool but she won't hide her limp either, because the audience needs to see that. Odds are she'll present as straight and white. She'll sing well and dream of world peace. Men find her pretty despite everything, and all is right with the world.

A recent commenter named Anonymous had this to say:

The winner of the dutch contest in 2006 was Roos Prommenschenckel. In fact she DID address the Parliament for the past year and in so doing a lot of good work for disabled people in Holland.

I could be wrong, but some of you do not seem to know anything about disabled people. Maybe that's because you seem to forget that this is in the Netherlands en NOT in America (which by the way also has these type of contests). I asure you it's not a freak show and we do not look down on these girls. Ok, so they do want to show they are beautifull (who doesn't?) but it's not all about that. More importantly it's about showing their strength and independance dispite their disability. Sure it would be nice if the girls could enter Holland Next Top Model (yes we also have this) too, but we all know why that's not realistic....

Well, and I answered with this:

While I'm not a fan of any "beauty contest," the difference with this particular Dutch contest is that it is live TV and random viewers get to vote rather than a panel of "experts." The venue change and the attitude of the company marketing the show make it clear this is not really about portraying strength and independence any more than any other beauty contest is about that. It's about appearance and walking (heh) a very fine line of socially acceptable femininity, with the disability expectations added in.

....Why isn't it realistic or appropriate to integrate everyone into the same beauty shows? What does it mean that people like you find it perfectly acceptable that there are separate contests with different criteria for disabled women? I'm not really advocating for integrated contests -- I think all these contest are problematic and exploitative of women. But I do think these special contests reveal further the sexism and ableism that is part of our cultural expectations of beauty and worthiness....

And I also looked up the winner. Just to see if she drools or limps or how she meets the contest requirement of having a disability "visible to the eye." This is Roos Prommenschenckel:

Obviously, she is a very beautiful woman. (Visual description: The photo shows Prommenschenckel from the shoulders up. She's a white woman with a creamy complexion, big beautiful smile and long wavy brown hair that goes past her shoulders. Her makeup is subtle and she's wearing a chunky beaded necklace that hangs below the thick white cervical collar around her neck. The cervical collar is the only indication she has any physical impairments or is not your average model.)

Here's another picture of her: (Visual description: Prommenschenckel is lying horizontally and the image shows her from the waist up. She's wearing a black gown with a tight camisole bodice and a skirt of tulle that forms a wall of fluffy blackness on the entire right side of the photo, hiding her hips, legs and feet. Her right hand rests on her stomach while her left reaches up as if to hold all that tulle back, or push her skirt back down. Her face is tilted just past horizontal so she gazes at the camera upside-down, a soft smile on her face. She's reclining on a lush teal velvet chaise, her hair cascading off the edge toward the floor. She's wearing a tiara in her hair, and an impressive collar of diamonds at her neck, as well as a matching bracelet.)





















It's a very seductive, submissive pose, and not just because she's lying prone. With her skirt flipped up and blocking all view of her from the waist down, well, her legs might be in any position. Anything might be going on down there, and that's an intentional tease, of course.

Here's the thing that comes along to complicate any strict feminist criticism of objectification in the images of Prommenschenckel lying prone: She has a condition known as spasmodic torticollis. Also called cervical dystonia, it's a painful neurological disorder that, it appears, she manages by using the cervical collar sometimes, and lying prone sometimes.

In her travels as Miss Ability, Prommenschenckel's been photographed in many less suggestive variations of the above sexy beauty queen boudoir pose.

Here, in this next photo, she reclines in the foreground in a manual wheelchair that tilts back, a pillow under her head while a crowd of people sitting nearby watch and listen to her. She's wearing a stylish denim jacket, slim-fitting gray shorts that end above the knee, and a weird flowery hat. She has a microphone in her hand and off to the left there's a handheld television camera with another microphone attached -- the man holding it is mostly out of the picture. A middle-aged woman stands next to her chair and a half dozen people sitting just next to her look on, the closest are a young blonde woman with her arms crossed and a guy sitting in a bizarre-looking scooter.

My Dutch language abilities are non-existent, but the online language translator says this is the "launch" gathering for something. While it is unusual to see someone in public lying prone (well, or wearing a tiara), this picture is neither seductive or objectifying. There are quite a few other photos of Prommenschenckel at the site promoting her functional role as disability spokesperson. And they show that the context of a beauty queen lying on her back matters a great deal. A critical analysis of her physical position cannot ignore that it's a physical accommodation for her impairment.

But then. There's also this pic of her at the Miss Ability finale, walking unaided on the stage catwalk before she is crowned:

It's confusing but not unexpected. The winner of Miss Ability, a contest where disability must be "visible to the eye" presents herself at the finale of the event in a flowy orange dress and strappy silver high heels, with only the cervical collar (here covered in orange fabric so that it looks like an unwieldy scarf) to mark her as disabled at all. Recall that the Dutch public votedfor the winner during this live entertainment TV show.

The lack of any obvious impairments is mitigated by a medical device signifying impairment. Of course, this is a still photo that wouldn't reveal, for example, a limp, and anyway visibility is not a good indicator of actual impairments -- that's one serious criticism of the ridiculous rules for a contest like this. But my point is that whatever her actual qualifications as a gimp, she looks like a swimsuit model who wears clumsy neckwear and occasionally lies down in public.

Disability-wise, I have as much visually in common with Miss Ability as, femininity-wise, Rosanne Barr does with Cindy Crawford. I don't know exactly who Miss Ability ends up representing , but unsurprisingly, it's not me. And it's no shock that a television viewing audience would choose a woman who can pass as not only "normal" but gorgeously "normal." And it's interesting that the winner not only meets the cultural standards of femininity and beauty, but often does so while lying down in what is a fairly submissive position. Necessary for her, I have no doubt, but how that's interpreted in a beauty pageant is a different thing altogether.

Is this groundbreaking or subversive to standards of femininity or ability? I don't think so.

Oh, and here's the group photo of all the contestants. What to make of that?

(Visual description: Nineteen pretty young white women are arranged in two seated and one standing row. The winner is in the center of the second row wearing the chunky necklace I described in the first image above. If any of these 19 women use a wheelchair or cane or even have an aversion to high heels, you cannot tell it from this picture. If there is a wheelchair present it has been completely hidden from view.)

Getting noticed

The National Disability Arts Forum (NDAF) of Great Britain has an online poster exhibition of posters for disability events that is very inclusive -- posters about all varieties of disabilities and art representing them.

Visual description of the poster shown at left: In primary colors. The central image is a man in a manual wheelchair with his right arm upraised, hand in a fist. He's drawn in yellow, with red and black shadow and a splash of yellow following him to suggest he's smashing through a wall. Next to his upraised arm, in big bold red letters: "The Ghetto" and beneath it "Disability Cabaret." The poster background of bright blue makes the yellow and red pop. Below and behind the man is a shadowed gathering of people and a sign I can't tell what it says.

About "The Secret"

The Secret by Australian Rhonda Byrne is the latest self-help book (and DVD!) to become a bestselling American phenomenon. From Newsweek:

The "secret" is the law of attraction, which holds that you create your own reality through your thoughts. You can, if you wish, take this figuratively, to mean that by changing your thoughts you can feel better about your situation in life. Or you can view it as a source of inspiration—that by believing you will succeed, you will perform better in the race or the test or your relationships.

But that's not what "The Secret" is saying. Its explicit claim is that you can manipulate objective physical reality—the numbers in a lottery drawing, the actions of other people who may not even know you exist—through your thoughts and feelings. In the words of "author and personal empowerment advocate" Lisa Nichols: "When you think of the things you want, and you focus on them with all of your intention, then the law of attraction will give you exactly what you want, every time." Every time! Byrne emphasizes that this is a law inherent in "the universe," an inexhaustible storehouse of goodies from which you can command whatever you desire from the comfort of your own living room by following three simple steps: Ask, Believe, Receive.

Byrne writes on losing weight:

Whether people have been told they have a slow thyroid, a slow metabolism, or their body size is hereditary, these are all disguises for thinking “fat thoughts.” If you accept any of those conditions as applicable to you, and you believe it, it must become your experience, and you will continue to attract being overweight....

Make it your intention to look for, admire, and inwardly praise people with your idea of perfect-weight bodies. Seek them out and as you admire them and feel the feelings of that-you are summoning it to you. If you see people who are overweight, do not observe them, but immediately switch your mind to the picture of you in your perfect body and feel it.

As Peter Birkenhead at Salon writes, this drivel wouldn't matter so much if Oprah, arguably America's most influential celebrity, hadn't been championing The Secret as inspirational and useful truth each person only need follow to make their life's dreams come true.

The problem, of course, is if you're actually and already fat or unsightly or poor or disabled or whatever. Then, according to the law of attraction as expressed by Byrne you should avoid all mirrors and seek out people who do not have your personal experiences and challenges and do not look like you. If you can't find those people, then basically you're screwed.

The Toronto Star's recent analysis includes this exchange between another self-help author, Marie Diamond, touting the law of attraction and people trying to understand the illogic of it all:

[Publisher] Burman hosted Diamond at an event at Indigo Books on Bloor last weekend, where she took some questions from a packed audience. "I'm a really big believer in The Secret," said one, a young black woman. "But I also believe that discrimination and racism are real. How can you harmonize those things?"

Diamond, a middle-aged Belgian woman with a welcoming air, nodded knowingly. "You just said you believe in discrimination. You be-live it. I'm going to ask you to stop believing it, because if you focus on the negative, you project it yourself."

Another, from a young man. "I really love what you're doing," he says. "But how, for example, was 9/11 attracted to the people in those buildings? That's something I can't understand."

Another thoughtful pause. Diamond, in her madras blazer and jeans, furrows her brow and speaks softly, breathily. "Sometimes, we experience the law of attraction collectively," she says. "The U.S. maybe had a fear of being attacked. Those 3,000 people – they might have put out some kind of fear that attracted this to happen, fear of dying young, fear that something might happen that day. But sometimes, it is collective."

Except for Byrne's quote above about losing weight, which asserts that overweight people are not overweight due to medical conditions they've been specifically informed of but rather negative "fat thoughts," I've not seen specific references to disability in this most recent law of attraction craze. But it's implicitly there, and has been explicitly part of the law of attraction in many of its other incarnations.

This is the new age version of "You're not praying hard enough." Faith and belief will fix your life and if your life does not improve then it is your fault for not having sufficient faith and belief.

Ask. Believe. Receive.

"Be-live it!"

Euthanasia in Oregon

David McDonald at DAWG Oregon (Disability Activists Work Group Oregon) had a friend named Tracey. He knew her for seven years and worked directly with her at a day program she attended for adults with developmental disabilities. David says she was "fiesty" and uncompromising, a loner, but a "tough chick."

Tracey was small. At age 44, she was just 4' 8" and 80 pounds in her wheelchair. She wasn't very communicative -- "non-verbal" is a more clinical term for it -- but as one of three caregivers for Tracey David spent five years working closely with her, helping her eat, changing her when needed, taking her for rides in his truck where they shared long one-sided verbal exchanges. David says she was quiet but had a big spirit. He knew her and called her friend.

In April of last year she was diagnosed with stage 3 colon cancer. David tells much of the story at his blog:

She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options.

An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis).

That makes seven people, if I count correctly. David indicates that they got off to a fairly sensible start and yet:

We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

What should have been a committee convening to manage Tracey's continuing health care during a critical time apparently became a select and fractured mini-ethics committee that determined Tracey's life wasn't worth saving. This decision wasn't initially made formally, it seems, but through the actions of a few or even through the very act of creating the "Advocacy Team" to make decisions appear legitimate.

David says (italics mine):

From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan.

David and another member of the Advocacy Team complained and were subsequently quietly excluded from future decision-making. The health care rep on the team took a 10-day vacation to Greece while Tracey waited in limbo with her medical records not even available for her team to read. David contacted Oregon's Protection and Advocacy agency for help on the day she was enroled in hospice. Instead of consulting the hospice program before a client is committed to it, Tracey's team consulted with hospice only after she'd been enrolled in the program for two weeks.

David's objections to this complete failure to address his friend's immediate medical needs resulted in him being labelled "disruptive" and "ancillary," and against Oregon laws about changing the advocacy team while critical care decisions are needed, attempts were made to kick him off the team. Lawyers got involved and communication became even more complicated.

Meanwhile, Tracey was bounced out of hospice in July because she was not "homebound." She'd been attending the day program all this time, riding the public lift to get there. Still, leaving hospice didn't mean actual treatment for her cancer.

David again (italics mine):

Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

Basically, other members of the team had made care decisions prior to the actual team's first meeting, and had represented those decisions to David and the rest of the team as doctors' advice. Inaccuracies about her abilities and life expectancy were stated, and then Tracey's quality of life was determined from that.

David and his wife tried to get guardianship of Tracey when it was clear that she was in danger of being given some random state guardian who did not know her, and David feared, would sign end-of-life documents like a DNR (do not resuscitate order). Tracey had had no treatment at all for her cancer, but David was not ready to give up:

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”.

David tells me, "I visited her at home, leaving 15 minutes before she died. As I was leaving I kissed her on the forehead and told her 'your death will not be in vain.' It won't. It can't be."

On his blog, David writes, "In life she was easy to overlook, but the way she died will not be."

For that to be true, the rest of us have to care. We have to be bothered enough by the fact that a critical medical diagnosis for a woman who could not speak for herself was met with a team of people dedicated to abandoning her instead of seeing what appropriate medical care might have done to treat her.

We have to picture Tracey. (Or picture me, if you like. There were about six months when I was mostly "nonverbal," and communicated by writing notes people sometimes chose to ignore. There was a doctor at rehab that my parents had to talk to sternly several times before she began taking the time to read what I wrote about my medical care while she stood at my bedside.)

Tracey's story is a scenario that Ashley X's parents feared for their child, and whether or not you agree with the medical treatments they inflicted on Ashley (I certainly don't), concerns that she would meet a fate like Tracey's at the hands of some committee that did not have her best interests at heart are a primary justification for those surgical alterations.

For Tracey's fate to not be overlooked, we have to ensure that the structure of advocacy and care already in place for the most vulnerable of people is actually accountable for serving them fairly and well. David tells me he has the documentation showing all that happened with Tracey's ISP Team. The Advocacy Team he had been a part of was nonfunctional about three weeks after this began. It just needs to be looked at and Tracey's fate taken seriously. That's the job of the Oregon Advocacy Center. This is their contact info:

Oregon Advocacy Center
620 SW 5th Avenue, 5th Floor
Portland, Oregon, 97204-1428
503-243-2081 (Voice)
1-800-452-1694 (Voice)
503-323-9161 (TTY)
1-800-556-5351 (TTY)

Will her leg fall off?

Story here.

Excerpt:

An online gambling site is inviting macabre bets on whether Heather Mills' prosthetic leg will fall off during her participation in US television show Dancing with the Stars.

The Antigua-based Bodog.com is inviting punters to lay money on whether Mills, the estranged wife of Sir Paul McCartney who lost her leg in a 1993 traffic accident, would suffer a mishap in the show.

The site made a "no" outcome the heavy favourite, and said Mills's leg "must fall off, not be purposely taken off, during a dance routine for all 'yes' wagers to be graded a win".

Via Ouch!

Things that crack me up, #19

Ever get the feeling you're not welcome?

Visual description: Three photos from CollegeHumor.com all regarding parking spaces and disabled access. The first shows a blue "Handicapped Parking" sign and another sign just to the right reading "Danger Falling Rocks." The second is a close-up of a sign that reads "Reserved Parking for New and Expectant Mothers, the Elderly, Injured but not Handicapped." The third photo is of a single parking spot with a blue access sign depicting "P" for parking and the universal wheelchair symbol. The parking spot is curbed on three sides and there is a thick post (probably a tall street light) in the center of the spot, making it completely inaccessible for any vehicle to park there.

Through Deaf Eyes on PBS

From Florentine Films:

Through Deaf Eyes is a two-hour PBS documentary that explores almost 200 years of American history: the experience of the Deaf community in the United States from 1814 to the present. The program aligns the broad sweep of U.S. history with the experiences of deaf people, showing how major social, economic, medical, and techno­lo­gi­cal shifts in America have changed deaf lives. It is propelled by the stories of people, both eminent and ordinary, and conveys a broad range of perspectives on what it means to be deaf.

In recent years, many have come to see the Deaf community as an ethnic group – a tiny minority in a hearing world. Like many minorities, it has had little voice; its history is under-represented in literature, and outside portrayals have presented a misleading picture. But being deaf is far from being the uniform (and tragic) experience that most hearing people imagine.

For many, the lack of hearing is not the essence of deafness at all: what is central is being a part of a culture. The film tells the surprising story of a people who were misunder­stood and repressed -- but joined together, grew in strength, and won great victories at last. The film is not so much a celebration, but rather an exploration of a history that includes culture, language, technology, politics and some very loud rock and roll.

The film was produced and directed by Lawrence Hott and edited by Diane Garey, of Florentine Films/ Hott Productions, Inc. Six filmmakers, all deaf, produced short films that are incorporated into the production: Wayne Betts, Rene Visco, Tracey Salaway, Kimby Caplan, Arthur Luhn, and Adrean Mangiardi.

The film is a production of WETA Washington, D.C., and Florentine Films/Hott Productions in association with Gallaudet University. It was written by Ken Chowder, with cinematography by Allen Moore, Michael Chin, Stephen McCarthy and John Baynard, and music by Judy Hyman and Jeff Claus.

The film was funded by the National Endowment for the Humanities, the Corporation for Public Broadcasting, PBS, The Annenberg Foundation, the National Endowment for the Arts and Sign Language Associates. It will premiere on PBS on March 21, 2007 at 9:00 PM. Check local listings.

Gimp shoes

Look! Converse shoes with little wheelchairs on them!










Visual description via wheeliefree at No Pity: It's a pair of grey converse trainers, with colourful chairs, rocking chairs and wheelchairs printed on the canvas. They have a white rubber sole and toecap and a green line running through the sole. The chairs are in white, purple, yellow green blue and pink!

Inconspicuous

Ruth at A Different Light wrote something recently about the phenomenon of unsolicited advice. Her witty commentary here:

Yesterday a woman approached me in the grocery store while I was shopping. She said “I really think, if I was you, that I would use one of those scooters to shop. Why don’t I go with you and we’ll get you one?”

Now I can’t use a scooter because I don’t have the trunk control to sit up in one. Nor can I transfer into one in the first place. I always get a mental picture of myself draped over a grocery scooter cart and someone on the intercom saying “Pickup in aisle three - quadriplegic down.”

I haven't walked since 1983 and I've used a scooter since 1987, and I absolutely understand Ruth's explanation that a scooter is an inappropriate piece of equipment for her. I'm rare among gimps in that I don't walk at all and still use a scooter. In fact, it's generally assumed that scooter-users can walk and some disabled people are even denied financial assistance buying scooters because of this presumption, even though wheelchairs would be financially covered instead of scooters.

I use a scooter for the exact reasons Ruth does not. While my trunk muscles amd limbs are all weakened, I am not paralyzed and the platform of the scooter under my feet allows me considerable leverage in performing tasks my arms would be too weak for if I could not use my whole body. The scooter's tiller in front of me also provides an arm support and place to grip to frequently reposition myself and avoid pressure sores. I've been prescribed a power wheelchair in the past -- and had one for a while -- but it required me to sacrifice much of my remaining ability to sit back in it properly and not sit forward with some weight on my feet. My ass hurt more too.

Well, so. The equipment one uses does not necessarily indicate a specific level of ability or inability.

But that humorous bit at the end of Ruth's quote above has kept me thinking of my high school days when my best friend Jenny and I frequently went to the movies. I used an aluminum manual Quickie back then, but Jenny pushed me when we were out together. We usually managed to arrive a few minutes late so previews were playing, it was dark in the theater, and many aisle seats were taken. This was pre-ADA and there was no such thing as cut-out seating for parking a wheelchair.

I'd transfer to the first aisle seat we could find, doing my best to be speedy so we didn't get refreshments thrown at us from people whose view we blocked. Then Jenny would bring my manual to some dark corner somewhere and leave it because theater employees wouldn't allow it to remain next to me. Remember those days? ("Excuse me, but your chair is a fire hazard and must be moved far away from you so other people can leave the building if it explodes into flames.")

Movie theater aisles slope toward the screen, of course, and all this transfer business was tricky in the dark. Both Jenny and I feared that some day she would dump me onto the sticky floor or I'd fall on my own. Then what?

Shy and self-conscious times two, Jenny and I decided that if I went rolling out of my chair and down the aisle in the dark, Jenny should sit and watch the movie as if she'd arrived alone. It was the less conspicuous and embarrassing alternative to her wandering the rows calling for me lurking down there somewhere by the used gum.

See what the ADA and those inadequate-but-at-least-existing wheelchair cut-out spots have spared me from? Thanks Ruth, for reminding me of those awkward teenage years.

I want to know

Offensive or hilarious?

Discuss.


Visual description: It's a four-and-a-half minute YouTube video of a MadTV skit where a well-dressed black couple approach an attractive white hostess inside a restaurant. It's not until they choose to sit on the patio (the conversation adds to the humor) that the camera draws back to reveal the wheelchair beside the hostess podium. The hostess struggles to get into the manual and rolls a couple yards to a stairway, which looms upward in the background. Flinging the menus she carries up the stairs ahead of her, she then drops out of the chair and precedes to drag herself and the chair halfway up the stairs while reciting the restaurant specials for the day. (Much arguing in dialogue here.) When the couple ask to see the manager, she starts dragging herself down the stairs to go get him. In a panic, the couple flee the restaurant. The hostess calls for another employee, Angelo, to report that "a couple ditched their reservation." Angelo is at the top of the stairs and uses wrist crutches. The comedy is visual as he struggles and lunges down the stairs and out the door after the couple while the hostess lays at the bottom of the stairs next to her wheelchair.

Things that crack me up, #18

Via Flickr, by StillSearching

Visual description: A plain sign on a stone wall, white letters on a teal background and white line border, reads "Torture Chamber Unsuitable for Wheelchair Users"

Marie Chouinard

bODY_rEMIX/gOLDBERG_vARIATIONS

Look for the video at the link above under "works" (video NSFW). A description from the website of choreographer Marie Chouinard's dance company:

In this new work by Marie Chouinard, the company’s ten dancers execute variations on the exercise of freedom. Often, the dancers appear on points: on one, two, and even four at a time. In a spectroscopy of the gesture, we also see them using different devices – crutches, rope, prostheses, horizontal bars, and harnesses – which at times liberate their movements, at others fetter it, and at still others create it.

This use of accessories gives rise to unusual bodily shapes and gestural dynamics and opens onto a universe of meticulous and playful explorations in which solos, duos, trios and group work, in their labour, pleasure and invention, echo the human condition.

An aesthete beyond norms, Marie Chouinard presents her ideas on the way the indefinableness of the Other and the flagrancy of Beauty brush up against one another through an interpretation of Johann Sebastian Bach’s Goldberg Variations. Subtle and extravagant, sumptuous and wild, the work’s movements plumb the insoluble mystery of the body, of the living being.

Slumgullion #31

From the Army Times: Army holding down disability ratings

The National Council on Disability on the Winkleman Scotus case on the rights of parents to represent themselves in IDEA cases:

At stake is the extent of access to IDEA rights and protections for seven million children and youth with disabilities. NCD affirms that in the nearly three decades that NCD has monitored IDEA, it is clearly established that parents are a main enforcement vehicle for ensuring compliance with IDEA. The statutory scheme of IDEA makes parental involvement and access to legal services integral to the protection of a child's rights under IDEA. In conducting its series of evaluative studies on education, NCD has consistently received reports from parents about their inability to find or afford lawyers to assist them with receiving the full benefits of IDEA for their children. NCD also has found through its research that families with children with disabilities are overrepresented among poor populations. NCD notes that there is a severe shortage in Ohio of attorneys with expertise in IDEA, and that the Ohio Legal Rights Service accepts a small percentage of requests by families for legal representation. Thus, it is critical to maintain the ability of parents like the Winklemans to pursue on their own legal recourse if they disagree with administrative decisions regarding the education of their child and cannot find or afford an attorney. NCD also appreciates the position of the U.S. Solicitor on the matter, who has submitted a brief to the U.S. Supreme Court arguing that the Sixth Circuit holding is "inconsistent with the plain language, structure, and purposes of IDEA."

From Inside Bay Area: Computer glitch denies thousands of seniors and disabled Californians their Medicare benefits

Consent decree will ensure disabled people receive power wheelchairs:

The named plaintiffs, who all live in Medicaid-funded nursing homes, filed the original complaint for themselves and other nursing home residents who were denied or not provided medically necessary motorized wheelchairs. Without power wheelchairs, they were not able to get around independently or access the services they would need to leave the nursing home and live in the community. Unable to use public transportation, go to a movie, or visit friends and family, these residents spent many days confined to their beds.

Roel Villareal, one of the original plaintiffs, who, since the complaint was filed in 2004, has been approved for a power wheelchair, said, "Everyone who needs a wheelchair should have one. Without a wheelchair, I spent most of my days in bed, unable to do anything on my own. The motorized wheelchair gives me the choice to visit family and friends as I please and live more independently." Mr. Villareal's situation is similar to thousands of other nursing home residents in Illinois.

From the Air Force Times: Democrats reject health care fees for vets

From the Janesville, Wisconsin Gazette: Despite ADA, accessibility still lacking:

Steve Pribbenow, a handicapped accessibility consultant who is himself disabled, hears it all the time.

The Americans With Disabilities Act means nothing to people until it means everything.

Matthew Hathaway of the St. Louis Post-Dispatch: Stop lights, signal posts may block wheelchair users (In other news, sky is blue.)

From the LA Times: Disabled woman is able ally for parents -- Despite the headline this is a good article about a disabled lawyer and mother who defends disabled parents from losing their children:

[Carrie Ann Lucas] is one of a handful of attorneys in the country whose specialty is representing disabled parents like herself. Her mission: making sure they get the same chance as everyone else to be moms and dads.

According to the U.S. Census Bureau, 15% of all parents with children in the household have some disability. These parents are far more likely to have the government try to take their children away. Even Lucas lives in fear that social services may seize her children. She knows the sorrow of losing a child — a 7-year-old girl whom she wanted to adopt was taken from her after a difficult court fight.

From Kestrell at Blind Bookworm -- North Carolina bill proposes paying sterilization victims $50,000:

Rep. Earl Jones (DGreensboro) and Rep. Larry Womble (D-Winston-Salem) are primary cosponsors of a bill in North Carolina that would authorize the state to pay $50,000 to victims of state-sponsored, involuntary sterilizations targeting those with disabilities from between 1929 and 1974.

Approximately 7,600 individuals were sterilized under North Carolina's eugenics program from 1929 until 1975 when the practice was stopped. North Carolina is one of over 30 states that had such programs.

From the Baltimore Sun: Visually impaired student fights for legislation to help get texts for college courses

From The Washington Post: Bus firm prohibited guide dog, suit says

From the BBC News: Colorado woman astonishes doctors by waking from six-year coma

From the NYT: Veterans face vast inequities over disability:

Staff Sgt. Gregory L. Wilson, from the Texas National Guard, waited nearly two years for his veterans’ disability check after he was injured in Iraq. If he had been an active-duty soldier, he would have gotten more help in cutting through the red tape.

Allen Curry of Chicago has fallen behind on his mortgage while waiting nearly two years for his disability check. If he had filed his claim in a state deploying fewer troops than Illinois, Mr. Curry, who was injured by a bomb blast when he was a staff sergeant in the Army Reserve in Iraq, would most likely have been paid sooner and gotten more in benefits.

Veterans face serious inequities in compensation for disabilities depending on where they live and whether they were on active duty or were members of the National Guard or the Reserve, an analysis by The New York Times has found.

Also from the NYT: I'm not your "girl," Gramps -- Not really dis-friendly but this is about home health care aides, a job falling disproportionately to women of color:

Theirs is the fastest-growing occupation in America, according to the Bureau of Labor Statistics, though still unlikely to keep pace with the demands of an expanding 85-and-over population, and the hordes of baby boomers not far behind. It is, arguably, the occupation that most directly affects the day-to-day quality of life of the nation’s frail elderly.

Yet the women who spoon-feed someone’s mother or diaper someone’s father are largely invisible and often disrespected. The workshop — no supervisors welcome — was an opportunity for this silent work force to be heard and to enjoy the camaraderie that isn’t part of their normal, isolated work day.

A webcast of Stephen Hawking lecturing at UC Berkeley

A letter to my Dad on his 76th birthday from... some enemies

Hey Old Guy Wearing that Ridiculous Hat with the Pom-Pom on Top,

Every day lately, you move those Bird Feeders around under the eaves. We see you. It won't help. It doesn't matter if the Giant Squirrel, er, Finch Feeder is under this eave or that eave, we will get to it. And we find the Giant "Squirrel Deterring" Cones sort of fun. They don't help you either. Now that we have taken to climbing the walls of your House, it is only a matter of time before we figure out how to get the Leverage to jump from where we hang by our back feet at the top of the windows to Any Feeder, Any Time We Choose. Then you will have to constantly threaten us with the use of The Shotgun. We don't believe you about that. That would be Illegal in city limits and we know this as well as you do. Illegal. Hah hah.

Yes, we gave up on the Giant Platform In The Sky Feeder after you sawed away the last oak branch we could leap from. Yes, it was very clever to put a platform for the Birds on a 30-foot pole in the middle of the yard. Yes, we know you conspired with Your Brother to weld a big metal barrier so we couldn't climb the post. (Our Brethren to the West are after him too, by the way.) Do you think We don't have family connections? We have bribed The Pileated to visit you just often enough that you keep the Suet Feeder full at all times in case he might drop by. Those Mourning Doves that have begun to roost in the tree all day? They belong to us. They drop seeds to us from the Giant Platform. And if you start any more trouble, they will just start Pooping up a storm, right there in the tree over your deck. Hah hah. Our deck.

It's true, the Peanut Feeder drives us to distraction. We can smell the Peanuts from our perches on the other feeders, eating seeds til we're Fat and Happy. We smell those Peanuts in our dreams. And we will have them. We will leap any boundary. We will chew through whatever you put them in. Meanwhile, the Nuthatches fear us and drop bits for us to eat. That's why they hang upside down, you know. To keep an eye on us because we will find them and Hurt them if they don't share the Nuts. The same should go for you. Shame on you for trying to keep Nuts from Squirrels. That's wrong.

Our latest plan is to turn the Cat against you. Your Cat. Hah hah. What do you think we say to her when we are nose to nose at the window? Why do you think she comes running to us when we tap at the window? She is under our Control. Watch yourself. Our influence is in your house, sleeping on your bed by your Feet. It is only a matter of time.

We will Defeat you,
Da Squirrels


_____________________________

Visual description of photos: There are three of typical Midwestern squirrels. The first is simply looking straight at the camera from a thin tree branch, tail up, challenging. The second is just a squirrel's face to the camera, but he is wearing a tinfoil beanie -- to keep out the mindrays, you know. The third is a photoshopped pic where the squirrel appears to be wearing a zippered squirrel suit with a Superman suit on underneath, visible through the open zipper. All were found online: 1) http://www.mdwfp.com/Level1/wildlife.asp?subject=Squirrel 2) http://tijil.org/SCO/source/afdbtest.squirrel.html 3)http://www.allfantasyart.com/photomsupersquirrel.shtml

A Different Light

Ruth Harrigan, or Rampracer, over at A Different Light is honest and witty and has been busy articulating so many things about being a quadriplegic, "crippling" language, acquiring a disability mid-life, and Mr. and Ms. Ableist's attitude. Every time I wander over there I find myself wishing I'd written what she's just said.

Go. Enjoy.

Gas lamps as angels

Lisel Mueller's poem on Monet is part of her Pulitzer prize-winning collection, Alive Together. Years ago I saw a great presentation of Claude Monet's work at the Art Institute of Chicago, and in walking through the exhibit with the headphones and listening to the narration about the progression of his life's work, I was able to see how cataracts altered his vision and changed the images he painted. Monet's Impressionism was dedicated to capturing light and color as he saw it, and by looking at his early and late works you can see the startling and honest differences in his vision. His later paintings are not as pretty, with muddier, yellower color tones. And yet, they do continue to show what the eye sees -- his impaired vision still provided a valid study of sight, color and light.

From the link just above, a description of how Monet's vision impairment affected his art:

Monet was both troubled and intrigued by the effects of his declining vision, as he reacted to the the foggy, impressionistic personal world that he was famous for painting. In a letter to his friend G. or J. Bernheim-Jeune he wrote, “To think I was getting on so well, more absorbed than I’ve ever been and expecting to achieve something, but I was forced to change my tune and give up a lot of promising beginnings and abandon the rest; and on top of that, my poor eyesight makes me see everything in a complete fog. It’s very beautiful all the same and it’s this which I’d love to have been able to convey. All in all, I am very unhappy.” – August 11, 1922, Giverny.

From another analysis:

Many of these later paintings verge on the abstract, with colors bleeding into each other and a lack of rational shape and perspective. For example, "The House Seen from the Rose Garden, 1922-1924," is an explosion of orange, yellow and red hues, but leaves the reader barely able to discern the vague shape of the house in the background.Monet's diminished sight opened up a new vista for his art, one in which memory and the unseen play a more important role than the perceptions of direct experience.

In a certain sense, we must learn to see these last pictures of his garden at Giverny not as increasingly confused by his inability to see clearly, but as pictures in which Monet's memory traces of the site he had planted and tended and lived with so long - the paths, the plants and the waterways of his garden - came to replace the ever more fragile images of his failing eye.

In Mueller's poem, Monet is represented as resisting the idea that his vision must be treated medically. If not embracing vision impairment, he is at least exploring it for what it offers that is new and different.

Monet Refuses the Operation
by Lisel Mueller

Doctor, you say there are no halos
around the streetlights in Paris
and what I see is an aberration
caused by old age, an affliction.
I tell you it has taken me all my life
to arrive at the vision of gas lamps as angels,
to soften and blur and finally banish
the edges you regret I don't see,
to learn that the line I called the horizon
does not exist and sky and water,
so long apart, are the same state of being.
Fifty-four years before I could see
Rouen cathedral is built
of parallel shafts of sun,
and now you want to restore
my youthful errors: fixed
notions of top and bottom,
the illusion of three-dimensional space,
wisteria separate
from the bridge it covers.
What can I say to convince you
the Houses of Parliament dissolve
night after night to become
the fluid dream of the Thames?
I will not return to a universe
of objects that don't know each other,
as if islands were not the lost children
of one gray continent. The world
is flux, and light becomes what it touches,
becomes water, lilies on water,
above and below water,
becomes lilac and mauve and yellow
and white and cerulean lamps,
small fists passing sunlight
so quickly to one another
that it would take long, streaming hair
inside my brush to catch it.
To paint the speed of light!
Our weighted shapes, these verticals,
burn to mix with air
and change our bones, skin, clothes
to gases. Doctor,
if only you could see
how Heaven pulls earth into its arms
and how infinitely the heart expands
to claim this world, blue vapor without end.


Actually, my favorite poem from this collection of Mueller's is "What the dog perhaps hears," which muses about the keen canine ability to hear what we can only imagine. Both poems seem similar to me in the way they explore ability, inability, and what differences can reveal.

Disability Carnival #10

Though still being added to, it's up over at HIV/AIDS, Deafness and Disability. Check it out.



Also check out the latest Carnival of Pozitivities at Creampuff Revolution.

Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

__________________________________________________

* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

May retreat for disability activists and allies

At the Leaven Center in Michigan:

Honoring the Complexity of Our Own Real Lives:
The Seventh Annual Retreat for Disability Activists and Allies

This annual retreat provides a space for community building, dialogue, and shared reflection among disability activists and allies who have experienced the radical and transforming power of the Disability Rights Movement. We gather to share our stories and renew our spirits, to connect with community and celebrate our pride.

In this year's retreat, we explore the practice of honoring complexity as a powerful path to sustaining and grounding our activism. Through storytelling, creative writing, music, meditation, laughter and deep listening, we will cultivate a loving compassion that allows us to explore the complexities of our own experience and open our hearts to others. We will investigate our own relationships with our bodies, our sense of sexuality and spirituality, as well as the array of interwoven personal and political identities that shape our lives.

Alongside this inward journey, we will also reflect on ways to more effectively honor complexity through our activism. Despite a larger political climate that fosters fragmentation and often keeps us disconnected from one another, we affirm the profound interconnections between disability communities and other communities resisting oppression. Together, we will share resources and strategies to help frame the Disability Rights Movement as part of a broad effort for justice and liberation.

In addition to exploring our theme, we will have time to enjoy the beauty of the land and to rest, relax, and be in community with disability activists and our allies who are committed to confronting ableism in themselves and the world around them.

Event is gender inclusive

Leader: Julia Watts Belser
Time: Friday, 7 pm – Sunday 1 pm
Cost: $185 ($50 deposit + $135 balance due) Scholarships available

Julia Watts Belser is an author, activist, and anti-oppression educator with a passion for disability rights. In partnership with the Hesperian Foundation, she recently co-authored A Health Handbook for Women with Disabilities, a grassroots health and advocacy manual for disabled women around the world. A strong supporter of the intersections between spirituality and social change, Julia is preparing for ordination as a rabbi and finishing her doctorate in Jewish Studies at the University of California in Berkeley and the Graduate Theological Union.

Autistic boy assaulted by waitress

Here's the story as told by the child's father:

We had to wait about 15 min. to order, and the waitress seemed stressed. It was David's turn to order... he was slow to make up his mind while ordering, and grumpy. Not yelling or anything himself, just cranky and repetitive (about not wanting ranchero sauce on his omelet, said 4-5 times). The waitress took this somewhat uncouth behavior as directed at her, and she suddenly snapped. She grabbed his shoulder, shook him, and leaned over and started mocking him, yelling his words back directly in his ear. He asked her to stop, and she grabbed his shoulder and then started screaming in his ear. Screaming that she had had enough and didn't have to work with this. And then she let go, stood up, told the table that she would not serve anyone at the table, and stalked away. He hadn't touched her beforehand... he wasn't even making eye contact, he had been looking at the menu.

We all looked at each other, in shock. After a pause, I got up and went to the manager, behind the register. I politely explained that I had an autistic son, that sometimes he needed a bit of extra time or patence, and did not read body language well. And that his waitress had abused him and refused to serve our table, and that that was unacceptable. I wanted an apology and a different server. But the manager backed up the waitress. He said that she was right, and that if my son was "going to be too much trouble" then we should not let him order for himself in restaurants. That it was our fault for having a child that needed patience or hesitated while ordering, and so we should have ordered for him. And that our party should leave.

Link via Ballastexistenz

The Liberated 19

First, the tweaking of my blogroll continues since I switched to the new Blogger version in early January (and inadvertantly lost the whole list) and I keep finding gimp sites that were delinked and I've forgotten to relink. For Maude's sake, just last week I realized I had overlooked New Mobility magazine when I rebuilt my blogroll! If you've got a disability blog that used to be linked here, is reasonably active or has good archives, and are no longer linked, please let me know! It's an error, not a dismissal.

Second, when I did switch to the new Blogger version, it began telling me on my dashboard page that I have 19 comments in moderation. Since I've never moderated comments (I delete spam as it shows up and am so far not popular enough for it to be more than a couple per day to archived posts), this has puzzled me. And try as I might, I couldn't make the new improved version of Blogger show me these 19 comments.

Until now! When some random button pushing to turn on comment moderation allowed me to view the comments I am not trying to moderate. Isn't Blogger swell? Anyway, there are 19 comments -- all from May and June of 2006 -- that have finally been freed from their mysterious prison. I apologize to those who made them, especially since some of them merited further discussion or responses I'll be attempting shortly. Go check them out.

Or stay here and mock this delicious comment, one of the Liberated 19:

Concerned said...

Dear Lady,
I feel sorry for you...and not for the reasons you think. Your disabilties are of no importance to me. One of my good friends is a quadrapoligic. My sorrow is for your sorrow. You are very angered at all the people who have hurt you over the years. Most articles you have are not for the fight or movement of disabilities yet for the emptiness and loniness of them. I will pray for you and want you to know that if you need someone to chat with please write. My email is apighin@wowway.com and my name is AJ. Have a blessed day and please do not hesitate to write.

Mini-Slumgullion (#30)

I think I need a break for a day or two from even thinking about blogging. Well, and I need the brain power to outwit Medicare's rules, anyway.

In the meantime, check out:

Hugo Schwyzer's "Thomas Eagleton and a note on mental illness"

Bint of My Private Casbah's "Working-Class Dilemmas," a response to my recent "Like a lion" rant

Lauren at Faux Real Tho! on "Insurance, Assurance"

Kristjan Wager of Pro-Science's two posts on U.S. health care -- here and here

And for some fun: the real plight suffered by wheelchair and scooter users everywhere (the photo illustrates it all so well).

See you soon.

Thinking bloggers

Trinity at The Strangest Alchemy has named me for the Thinking Blogger Awards. It's basically a meme with a fancy little icon to add to your blog,





but for me it means that Trinity, whose journal I've started reading fairly recently because of her great comments at Queer Dewd, finds The Gimp Parade worthy of suggesting to others. And that makes me feel good about this site. (Really good! Thrilled, actually!) Trinity blogs on disability, among other things, and I'm working my way through the archives over there.

In passing on my linky love, I'm listing five disability bloggers from my sidebar who always broaden my mind:

A Life Less Convenient -- Jen Burke's artistic blog diary of a life with chronic illness has been one of the reasons I've tried to be braver about describing the complexities of living with severe impairments and the societal consequences of disability status. Her eloquence on her frequent hospital and health care experiences aren't overtly political on disability issues, but show you don't need to be to add to the larger story.

Fit of Pique -- Thirza Cuthand's writing didn't come to my attention until the Ashley X case became big media fodder at the beginning of the year and she posted on her disabled sister, but every damn time I wander over there now, Thirza blows my mind. On mental illness and modern psychiatry, on queer issues, on being Cree and mixed race. Oh, just check it out, already!

From the Port -- Kathy Podgers lives in Cambridge, Massachusetts, and her blog is an example of the tenacity needed to fight injustice locally. She documents the inaccessibility of local sidewalks, buildings and transportation, and currently shares her battle to be able to even attend city council meetings because of discriminatory bans on her service dog.

Gordon's D-Zone -- Gordon Cardona writes from Paolo, Malta. This post alone should explain my admiration.

The Trouble with Spikol -- Editor and columnist Liz Spikol blogs prolifically on mental health, tying together the social significance of pop culture, depressed celebrities, health care, and police treatment of those with mental ilnesses, among other things. If you read one blog on mental health news, this should be it.

The rules to this meme, set out by its creator, are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is an alternative silver version if gold doesn't fit your blog).

Yay!

Penny has made a new graphic for the carnival widget!













This makes me irrationally happy. Including my impromptu creation, we now have two:













To add it to your sidebar, you can follow the directions at the blog carnival site, though it will include both the links to future carnival sites and some rather ugly adverts. Alternatively, you can add just the image to your sidebar, with a rollover link to the widget on the carnival site. That's not as direct, but specific directions on how to do that can be found here. You could also more actively manage the sidebar image to change the rollover link for each carnival date, aiming people to the hosting blog. I'm sure there's an easier way to do this still, but I'm not savvy enough to know it.

I hope some other people play around and make more carnival images. Meanwhile, I'm using the newest one, and I've made it point straight to Leila Monaghan's blog HIV/AIDS, Deafness & Disabilities, which will host the next disability blog carnival on March 8.

Visual description of newest carnival icon: It's a color drawing of an old man from perhaps the 19th century. He's in profile, wearing a brown coat and knicker pants. His right leg is amputated below the knee, and replaced with a wooden peg. The other leg has a bandage on it and he is using a cane. The words "Disability Blog Carnival" are superimposed over his middle section.

For a visual description of the icon I made a couple weeks ago, check the bottom of this post.

Like a lion -- A rant

Last weekend we got 15 inches of snow here at the Gimp Compound. Since I'd managed a successful Parts Replacement Event with my feeding tube just a few days before and had no place I needed to be, a snow day or two was cool with me.

But this week. This week has been more of an on-going adventure. Tuesday, a family member wandered over to the local Menard's and tripped over some poorly-placed lumber, cracking bones in her wrist and knee, spraining an ankle and breaking a toe. Half my nurses -- those who are licensed LPNs attending the local college for their RNs -- are bogged down in what appears to be a departmental failure to provide the needed education. A suddenly-changed school policy requiring they do their online computer homework at the college instead of at their convenience means that one of my nurses has had to cancel a night shift, which means my gimpy relative with the weak bones has two nights per week to try and help me in ways she can't possibly, at the moment.

And the snow plows have given up for now. Visibility is too low. Tonight's nurse made it here over slippery roads. Hopefully tomorrow will see the roads clear. In the meantime, my back-up batteries are ready in case the power goes out. I can last for 16 hours on them, if I need to.

And yet this is not the most distressing news of the week. My medical supply company called today to say that Medicare will not allow them to give me more than 90 trach suction kits per month -- that's three per day, when I always need an average of maybe five, and some days easily nine or ten. Trach suction kits consist of sterile gloves, a sterile container for the sterile water used to lubricate, and a sterile plastic catheter that slips down my windpipe to suction up the lung gunk that bypassing the upper respiratory system triggers my body to make. The catheter is connected to a little vacuum machine that provides the suction. This is the key service my paid help must provide in a sterile format in order to keep me, or anyone with a trach, healthy. Without suction I will literally drown.

And I cannot pay out of pocket for what Medicare will not cover because that would mean I do not need the state to help pay for my nursing help. Have I mentioned that while most all of my nurses have needed to be trained to do this suction (because it is not a basic skill all nurses learn to qualify as nurses), the state nevertheless requires that nurses be provided if it pays for my help? I'm happy with the women who work here -- though we need twice as many of them -- but their required qualifications do not mean they are trained to do what I require. And of course, they cost more to employ than a non-nurse who would have to be trained to suction in the same way. And with the shortage of available nurses, I do not have the staff that I need.

The Medicare rules about three suction kits per day are not new and do not affect only me, of course. As I understand it, I can get some sort of medical waiver through my doctor certifying I need to not drown and must have suction available when I need it instead of just three times per day, rain or shine. Apparently that waiver will be required attached to every sale of every kit beyond the allowed amount for as long as I need them, which will be until I stop breathing, basically. Somewhere there are people paid to look at these waivers all day, in perpetuity. From a listing of these rules:

If Medicare determines there is medical necessity, the standard allowable for the following items are listed below. Medicare may sometimes approve larger quantities, but that decision is made on a month-to-month basis by the individuals reviewing the claims. They may approve larger quantities one month, but disapprove them a different month. For the most consistent reimbursement by Medicare, you may want to consider placing one order per month, staying within the limits listed below.

My orders to the medical supply company are already monthly. I have no idea how complicated getting this waiver and getting permission for the medical supply company to give me extra kits will be (is there a special form? can I get kits on credit in the meantime? will I need to get a doc to sign the form every single month for the remainder of my life?), so it's a lucky thing I have a few extra kits just now. As I said, I cannot buy out-of-pocket what I need to breathe because my state-paid nursing care would be cancelled altogether.

As far as I can tell, this is how it works. You qualify for Medicare, and muddle along until one of the obscure rules bites you in the ass and threatens your life. Then you see what you can do to survive. Or the system fails you.

It's not a matter of wise or difficult funding choices. No one is out there allowing sterile catheters to be shoved down their windpipes willy-nilly, recklessly suctioning when they don't really need cleaner airways. The kits I currently use cost about $5 each, which, let me assure you, is peanuts compared to many other innocuous pieces of plastic that I also require. If I didn't have enough kits, or had to use non-sterile equipment that caused an infection and forced me to go to the hospital, my Medicare would kick in to pay for much more than a few extra measly kits per day.

And I finally saw my pulmonologist yesterday, for the dizziness of seven weeks ago, which has abated almost completely now. I think it was caused by weaning off Dr. Perky's Effexor. I confirmed that I more or less know what I'm doing with the ventilator settings, and a blood gas proved all is well. (A competent RT had absolutely no trouble making me bleed.)

I like this doctor, and we discussed a drug I use in a nebulizer that the pharmacy has insurance reimbursement problems with. The pharmacy will only give me the big bottles of the liquid medication (30 ml as opposed to 4ml bottles), which then expire and must be thrown away before I have used half of each bottle. Half my prescription goes into the garbage because of the size of the vials I'm sold. Then my monthly prescription runs short and the insurance company freaks out because I need more too soon. I will try to wean off that drug, if I can. The doc says that's best anyway, and may be possible. Or switch to mail order drug supply and see if that doesn't work. (Incidentally, this drug -- Mucomyst -- keeps the lung gunk from getting too thick, allowing me to need less suctioning.)

None of this is about insurance or Medicare providing what I medically need or even necessarily saving them money. It's about policies that don't fit individual needs and apparently are not to be budged.

Do not even get me started on the single-use sterile saline bullets sometimes used to dilute thick lung secretions so that suctioning is easier and causes less trauma. Medicare simply states they are not necessary and will not be covered at all. They were used frequently at the first-rate rehab center that taught me what I need to know to keep myself healthy. I have some in a box here, and use one or less per day. Now I learn they are completely unnecessary and the comfort I have noticed from their use is a figment of my imagination.

Gah.

Move along

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

Instead, go here, here, and here.

US Census 2010 will not track disability

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

An excerpt:

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

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

Here's a fun fact:

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

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

Heather Mills takes to the dance floor

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

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

All this crazy talk is driving me nuts

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

But.

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

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