Hiya gawkers!

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

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

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

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

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

Katie Jones and Deus ex machina

The story of Katie Jones has been circulating slowly on disability listservs and blogs since the December 9 article in the Chicago Tribune. FRIDA provided an early link to the story, and since then Crip Chick, Shiva, Bint, Trinity, Brownfemipower have all addressed aspects of Katie's story and the larger issues. Comments everywhere have been... illuminating.

I haven't written about this before now because these sorts of articles from the mainstream media -- this one involving children, parental control of a child's well-being, disability prejudice, personhood and consciousness, health care in the U.S., living with the aid of machines, "special needs" schooling, and "right-to-die" versus the right to not be coerced to die -- contain so much information that is either misleading, incomplete or biased that I can't think where to begin.

Katie Jones is a second-grader in Lake County, Illinois, who has severe cerebral palsy and whose parents have sent her to school with a DNR order (Do Not Resuscitate) prominently attached to the back of her wheelchair. Taking that much at face value, the implications for Katie, her parents, her young classmates and school employees are complex and profound.

Add to that some mind-boggling facts about both the case and the media coverage of it: The Tribune article portrays cerebral palsy as a terminal disease, and while I'm not well-versed on the very wide range of abilities and medical issues people with CP possess, none of the many people I have known personally have ever been about to drop dead. So that portrayal is dangerously and cruelly incomplete. The Tribune article doesn't discuss the fact that Katie apparently does communicate thoughts and feelings beyond those independently interpreted by people around her. You must dig to the caption of photo 4 at a sidebar link to even learn she is capable of expressing her feelings at will. And this, at the article's end:

Before the bus arrived, Beth Jones weaved a French braid into the school girl's long brown hair, while Allie [Katie's four-year-old sister] held up a feeding tube. A machine could do the job, but that makes group hugs difficult.

Besides, anything that beeps isn't allowed in the Jones house.

"When we took her home from the hospital, where there were so many machines, we made the no beeping rule," Beth Jones said.

The group hug part is completely untrue. I've had a feeding tube for two years now, and I can say with absolute certainty that there is nothing about attaching a thin plastic tube to the end of it and running that tube to a machine that makes it hard to hug or be physically close to people. It's actually less a problem for physical intimacy than an IV in the top of the hand would be, whether that IV is connected to a hanging bag or a machine. Feeding through the tube manually is a perfectly reasonable way to use the tube since basically this just entails using a giant syringe or holding the tube up and letting gravity allow nutrients to travel gently into the stomach, but attaching falsehood and phobia to machines that do this same task contributes to the pervasive ableist belief that people are better off dead than using medical technology for the long-term.

And the "no beeping rule"? There's the real reason for the DNR right there. Better dead than using a machine that might make some noise.

I understand machines are scary. I get that because I've needed to make my own adjustments to them and also because I see it in peoples' eyes every day. And I do understand people have different points at which they might choose not to live beyond, though I'll add that there seems to be little reflection upon or respect given to the people who live quite happily beyond those points.

I'd like to hear much much more about the Jones' "no beeping rule." Is it because Katie is terrified of the beeping? Does the beeping represent an identifiable point beyond which Katie's parents don't feel they can handle her care? Or is the beeping too public? Too intrusive? Too medical? Why is an alarm that can signal a problem that should be addressed juxtaposed against the myth that without machines Katie will die "peacefully" from choking or suffocation? Why is this type of beeping so forbidden in our technological age where cellphones and dozens of other machines chirp at each of us all day long?

It's not really the beeping, of course. And the answer to Trinity's question:

Now why is [info that Katie shares thoughts via a communication device] tucked away in the photoshoot and not right there by the article, which is written in a way that suggests she is not aware what is happening?

seems to be that it didn't seem relevant to the point of the article. Katie's consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.

Further discussion can also be found at Wrong Planet, an online forum for people with Asperger's Syndrome.

Cross-posted at Alas, A Blog

"Ransom notes" ad campaign ends

Ari Ne'eman, president of the Autistic Self-Advocacy Network (ASAN) that led the protest against the NYU Child Study Center's "Ransom Notes" ad campaign, announces:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"

It didn't look promising at first. This past weekend the images of the ads at the Child Study Center's website were briefly taken down, but they were back up when the New York Times Sunday coverage of the ads quoted Koplewicz as saying the Center was determined to "stick with it and ride out the storm" and even expand the campaign to four other cities soon.

Kristina Chew, PhD., who blogs at Autism Vox and was also quoted in the NYT article, has been providing relentless commentary, coverage and linkage to dozens of blogs writing about the ads. To follow those posts chronologically go here, here, here, here, here and here.

Or check out Furious Seasons where Philip Dawdy makes some interesting connections in noting that Koplewicz co-authored a study of Paxil for the pharmaceutical company Glaxo SmithKline that apparently exaggerated benefits and downplayed adverse effects in treating adolescent depression. Koplewicz is one of dozens of co-authors of that study, but Dawdy wrote earlier this year:

"Some very smart people have taken on many of the issues around Study 329 and Paxil/Seroxat and, based upon the evidence, I'd have to say that it's fair to assert that none of us in the patient world should trust anyone who had a hand in the study (unless they want to suddenly recant the work) on absolutely anything they say about mental illness. At a minimum, we should be wildly skeptical of any claims they make."

Dawdy hasn't been the only one to speculate about what corporate interests might have connections to the Ransom Notes ad campaign. Many commenters to the NYT article wondered about possible pharmaceutical backing for the ads, though I've seen absolutely no direct evidence of this. It seems to have been yet another case of do-gooders offering a message that didn't take into account the experiences and feelings of those they set out to help.

In the Center's announcement of the end of the ad campaign, Koplewicz writes:

Though we meant well, we've come to realize that we unintentionally hurt and offended some people. We’ve read all the emails, both pro and con, listened to phone calls, and have spoken with many parents who are working day and night to get their children the help they need. We have decided to conclude this phase of our campaign today because the debate over the ads is taking away from the pressing day-to-day work we need to do to help children and their families. They are and remain our first concern.

Our goal was to start a national dialogue. Now that we have the public’s attention, we need your help. We would like to move forward and harness the energy that this campaign has generated to work together so that we do not lose one more day in the lives of these children. We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority.

We invite all of you to continue this conversation online at a “town hall” meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site www.AboutOurKids.org.

Cross-posted at Alas, A Blog

Blackface/Yellowface/*face

In "Blackface/Yellowface/*face" Wheelchair Dancer muses about identity politics, performance arts and disability culture:

Despite years of discrimination and oppression and despite a history that is as appalling as the histories of other minoritized groups, there is no performing arts context for disability face. And even though exaggeration of certain physical aspects of certain impairments, there (perhaps fortunately) has not been a systematic reworking of these localized moments into a "tradition." Any attempt at disability face would look like a party costume. And that's kind of the impression I get when I see non-disabled types acting disabled roles.

So, over to you. What would disability face look like? Would you be able to distinguish disability face from disability drag? What would disability drag look like (and here I really do mean *drag,* as opposed to *dress up*). Could PWD with one impairment drag another? Could you drag your own impairment? Or would it have to be non-disabled people dragging disability? When does drag become disability face?

Could there really be a set of performances of disability in which we can separate an actor dressing up as disabled in order to create, with some degree of verisimilitude, a disabled role (because you *know* there are no disabled actors who can do this kind of stuff) from someone in disability face? Would it have to be literally a "face" to be disability face?

Other posts by Wheelchair Dancer on the intersection of race and disability include this, this, this and this.

Cross-posted at Alas, A Blog

The "ransom notes" campaign

We have your son.We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now…Asperger's Syndrome

The NYU Child Study Center has a new public education campaign designed to create awareness of psychiatric disorders. Ads appearing in magazines and on NYC billboards and kiosks are mock ransom notes signed by specific psychiatric disorders: ADHD, Asperger's Syndrome, autism, bulimia, depression and OCD. Here's the ad for bulimia (click on the ad below to see it larger or read text description here: Cut and paste words from magazine text form a ransom note: "We have your daughter. We are forcing her to throw up after every meal she eats. It’s only going to get worse. --Bulimia" Below the note the ad says, "Don't let a psychiatric disorder take your child" and gives info for the NYU Child Study Center.):

Text for the other ads reads:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.

We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD

We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens…Depression

We have your daughter. We are making her wash her hands until they are raw, everyday. This is only the beginning…OCD

The NYU Child Study Center, celebrating its tenth year and the relaunch of its public information website AboutOurKids.org, says:

The idea behind the “Ransom Notes” is that, all too often, untreated psychiatric disorders are holding our children hostage. These disorders rob children of the ability to learn, make and keep friends and enjoy life.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We understand the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

And people are joining the dialogue. The Autistic Self-Advocacy Network (ASAN) has gathered 14 other disability rights organizations and issued a joint letter (.pdf file) calling for withdrawal of the ad campaign. (There's also a petition for anyone to sign in support of the ASAN joint letter and appeal.) In part, the letter reads:

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

and

Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.

The letter also notes that the ad campaign supports the idea that people with these psychiatric disorders -- note that autism and Asperger's Syndrome are labeled psychiatric disorders here -- may be dangerous to others around them.

Does anyone else's mind jump to Columbine-type scenarios when they see "children" and "hostage" linked? Mine did.

h/t to Stephen Drake at Not Dead Yet

Cross-posted at Alas, A Blog

Robert Latimer denied parole

Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.

Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)

On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.

But he has never expressed remorse, which is why he was denied parole:

The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.

He remained unapologetic and angry at the legal system.

"The laws are not as important as Tracy was," he said.

"I still feel don't feel guilty because I still feel it was the best thing to do."

While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.

In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."

Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:

"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."

I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.

Cross-posted at Alas, A Blog

Disability in China

A Chinese woman by the name of Wang Fang declined a disability pension despite being born with feet that face backwards. This is news in Britain, if only, perhaps, so the intriguing pictures of the 27-year-old waitress and resident of Chongqing could be presented for the public to view.

Apparently, Wang's visibly different feet automatically qualify her for a disability pension in China, but she's refused both the "disabled" identity and the cash.

"I can run faster than most of my friends and have a regular job as a waitress in the family restaurant," she says. "There is no reason to class me as disabled. I'm like everyone else - except of course that I put my shoes on backwards."

She does wear her shoes backwards, and it appears that while her feet do truly "face backwards" they are not literally attached backwards so much as bent back so that she walks on the tops of her feet. (Visual description of the two photos here: Wang stands at the edge of some stairs next to another woman in the first photo, the camera shooting from below to show Wang wearing red bootie slippers worn backwards, with the heels facing the camera. In the second pic, Wang sits on a bench next to a child -- probably her five-year-old son -- while the same woman from the first photo supports her outstretched legs at the ankles. Wang, grinning broadly, is slightly blurred in the background, with the focus in the foreground on her bare feet. They are, indeed, turned backwards, and also small, wide, swollen, deeply callused and her toenails appear visible where most of us have pads on the underside of our toes.)

It looks painful. And it's fascinating, of course. That's why the pictures-- and the story as a whole -- exist in Britain's Telegraph. The news is that she denies being disabled or needing government money. The photos are evidence that she is visibly deformed and "legitimately" disabled. This little feature is newsworthy because she's interesting to gawk at. The story is too short to inform readers of any details about who Wang really is or what might be her true circumstances or full reasons for turning down the pension.

What caused her feet to form this way? Is it common? Is there medical treatment that could have "normalized" her feet when she was a child? Would that have been helpful or completely unnecessary? Does she need special shoes or wear the big slippers all the time? Is there pain? Are there work accommodations that help her? If her waitressing job wasn't in her family's restaurant would she be employable in China? If her family didn't have her as a waitress, would the business fold under the simple strain of paying another employee? How would that disability pension compare to a waitress' paycheck? Would she have to give up her job (and paycheck, if the family business issues her one) if she accepted the pension? That last is almost certainly true.

We learn nothing of that, yet here is what the Telegraph makes sure to report:

Ms Wang, a mother to a five-year-old boy - whose feet face the more usual forwards - is not looking for sympathy, and is certainly no benefit scrounger.

Her son is normal and she is not one of those "benefit scroungers," you see.

Here are some basic facts about disability in China that might have enriched what is otherwise a "freak show" feature:

According to the China Disabled Persons' Federation there are about 83 million disabled Chinese out of the total population of over 1.3 billion people. That's less than seven percent. (By comparison, the 2000 U.S. Census (.pdf file) estimates that over 19 percent of non-institutionalized American citizens aged five and older have a disability. That's about 50 million and is considered by many to be a gross underestimate, depending on definition of disability used and how inclusive the count really is.)

Currently, only about seven percent of the one million disabled in China's capital, Beijing, are employed. Other statistics are similarly grim, though the Paralympics, the Olympic event for disabled people that directly follows the Olympics themselves, is coming as part of the required commitment a host city must provide for the international sport celebration. Great hopes are pinned on all the accompanying accessibility China must create in Beijing and the lasting improvements it may provide for disabled Chinese.

Disabled children sold into slavery to become street beggars for racketeers in Beijing are a significant social problem, and the coming Beijing Olympics likely mean that one way or another these young beggars will be removed from the public eye. Thus, Wang -- able to walk and run, employed, living with her family -- is likely among the "elite" disabled in China.

Still, it's likely that for purely financial reasons (never mind the social and cultural ones), Wang could not afford to accept disability status and the accompanying pension. Or, since she's able to walk, run and work, she shouldn't qualify at all for the pension, right? But then there'd be no story or reason to publish those photos.

h/t to Ruth at Wheelie Catholic

Cross-posted at Alas, A Blog

Announcement-y stuff

Well, that's over.

Image description: The black-and-white photograph is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Mission Accomplished" with a little skull image after the "'07". Sara made this and the one from the beginning of the month, which I will leave in the sidebar at right for a while because it's cool. Cooler than me, actually.

So. One mission accomplished and another about to begin. Tomorrow I will begin blogging at Alas, A Blog on a regular basis. I've guest blogged there before for a month-long stint, and now Barry (AKA Ampersand) has asked me to be one of his regular co-bloggers. I'm excited about this for a variety of reasons, and I'll say more about it tomorrow, but two things for now:

First, everything I post over there that is disability-related will also be posted here, and some of the sillier stuff here won't all appear over there. The Gimp Parade won't change except that a couple times a week I'll make a point of writing something that will hopefully be interesting for the larger audience over there to read and maybe even discuss. Content here might possibly improve. Plus, I will be able to keep the focus here on disability and use Alas for occasional writing on non-disability stuff that I am often itching to talk about but don't want to use The Gimp Parade for.

And second, I know that some of my strongly anti-porn radical feminist friends won't want to click over there to follow discussion and might be upset I'm contributing there. (No, Amp isn't in the porn business and you won't find porn at Alas, but about a year ago he did sell his domain name in order to pay some bills. The buyer does link to porn, and you can read more about all that here.) I'm not categorically against porn, and while I could say much more about that, I won't just now. But I hope those uncomfortable with participating at Alas will continue to do so here.

What I will say is that Amp has always been committed to inclusion of disability issues on his blog and in discussion of diversity generally. He and I don't agree on everything about disability. For example, there've been long threads on personhood and Terri Schiavo at Alas that made me want to scream and tear my hair out, partly for Amp's contributions and partly for the tone of many commenters. Step outside the disability blog niche and many (if not most) discussions of disability are much more contentious and not as crip-friendly or nuanced to our experiences. I don't expect this will have changed and while I will personally find it very challenging -- partly because I lose patience and interest when thread comments run into the hundreds -- I don't think it has to be a bad thing.

Amp and I have been discussing disability and other things in various online forums for about eight years now, beginning at the long-defunct Ms. Magazine Boards. That predates this blog by about four years. So, I have trust in Amp's commitment to disability issues and inclusion of the disability perspective in any and all debates at his place, though as I've noted the community of people who comment there are not all of like minds. I hope readers will join us over there to enrich the discussion of disability. It's bound to be interesting.

On this site's "health-relatedness"

In the past two days I've gotten two emails because of what the senders said is this blog's "health-relatedness." One invites me to participate in a Brown University research study survey in "the area of health and medicine," and the other informs me that The Gimp Parade has won a 2007 Health Leader Award from the Irritable Bowel Syndrome Treatment website.

I haven't taken the survey yet, but I expect the questions about blogging on "health and medicine" will be as imperfect a fit as other health blogging surveys I've taken in the past. But I'll take the survey and hope my participation makes some tiny difference amidst all the "health and medicine" blogging by smarmy and/or compassionate doctor blogs, weary and dedicated nurse blogs, insurance and managed care blogs, and whatever else qualifies. And I will graciously accept any award from a site or organization that says it seeks to honor those who "are squarely on the side of the patient."

But, you all know that "health and medicine" are not the topic of this blog, right? This blog is about social issues, culture and politics relating to disability rights. I realize there's some crossover that may be confusing, especially when I relate specifics of my impairments, hospital visits and such, but those are the details of how social issues, culture and politics come into play. They're the evidence of why disability rights is important. "Health" and "medicine" aren't even in my sidebar index (except as "health care" and "mental illness/health") because I don't perceive my writing here as promoting either health or medicine. Then again, neither "justice" or "respect" are in the index and they're what I think I'm writing about here every day.

This isn't the first time I've gotten email that I feel may or may not miss the point. I've gotten offers for free accessibility software or discounted accessible bathtubs if I blog about the product. I've gotten link requests from health care corporations and, most amusingly, for President Bush's New Freedom Initiative, which I recall saying critical things about at least once prior to the request. When I hosted Disability Blog Carnival #2 and the theme was "the cure" I turned down one doctor's submission on bowel health. (Apparently, my audience includes those concerned about poo, which is possibly everyone.)

Either through poor emailing habits or formally declining, I've opted out of several writing opportunities to new sites like [with]tv, Wikis on dis rights, and Disaboom, mainly because I don't want my primary goals for this blog to be used for someone else's corporate gain. And I don't want obligations to produce content to go beyond my having something relevant to write. Well, and also I am lazy.

I often wonder how the bigger bloggers field their email requests. Do they answer all or ignore most? In my worst nightmares I cannot imagine the in-boxes of Echidne or Jill at Feministe. I get a couple nice emails from CNN and I sort of freak out, you know? Though it did end well for me.

I've gotten some truly amazing emails, as well. A couple heartbreaking letters were sent from formerly institutionalized disabled people touched by my one-time CNN blog. The lawyer for Emilio Gonzales' mother thanked me for my coverage and support. One of Ruben Navarro's caregivers wrote to thank me and share that Ruben had a great sense of humor and has inspired her to persist in the field of mental health and disability. And the back-channel camaraderie with fellow dis bloggers that I love so much.

I don't really have any problem with this blog being categorized as about "health and medicine" so long as that never disqualifies it for the "social justice" or "politics" categories. I don't consider myself a "patient" or a "client" or a "customer of health care services" here, so much as a writer and activist. And hopefully a pain in the ass. But I will concede I am definitely "squarely on the side of the patient."

Image description: A small graphic banner reads "Health Leader 2007" with the date bracketed by gold stars.

Just when you think you're safe

This past August really sucked. September did too. I got a routine feeding tube replacement at the end of July and then had weeks of agony every time I ate because the new tube was not placed right. There was too much of it in my stomach, it turns out, and when I ate the balloon at the end of it slipped down to block food from exiting into my intestines. I felt like I was being poked with a sharp stick from the inside. I was hungry all the time, then had intense pain when I dared to eat.

Of course, the cause of my pain went undetermined for all of August and half of September. It took some persistence to get medical personnel to just get that thing out and try a new one, please. And after a replacement fixed everything so that I was immediately pain-free, there was never an acknowledgment that it was the installation that caused the problem. I didn't even press for that because, well, I know the game. And I also know mistakes happen, I'm often a peculiar case to treat, and excellent doctors can do their best and still not have it work out. It may have been gross incompetence or a routine but regrettable error, and I know I won't get an official medical answer on that. I satisfy myself that I know more about who and where the risks are for the procedure and the institution I go to for it.

But that drama isn't what I want to write about.

On the day I got the successful replacement in mid-September, I first consulted with the doctor in the out-patient recovery unit. See, the painful tube was installed by a doctor I'd never met before. The guy who'd always done it before and who successfully fixed it is the one I've noted before seems to be pretty rude. I'll call him Doctor A. Doc A made some sensible comments in that consultation, saying he'd like to fix one thing at a time -- first the pain, but maybe next replacement I could switch to a Mic-Key tube. I have a G-J PEG tube which I describe here. The Mic-Key goes only to the stomach and is just a button on the outside rather than a tube and ports for both the stomach and jejunum.

In our consultation, Doc A suggested the Mic-Key and I explained that the whole reason I got the feeding tube to begin with is because of stomach troubles that made the jejunal port the key part of my anti-starvation strategy two years ago when I entered the hospital weighing 75 pounds. I can still swallow enough that I eat all my food by mouth now (and have for the last year or so since gaining weight and strength because of that tube), and while eliminating the feeding tube entirely might be a legitimate proposal, eliminating just the part of the tube that has been particularly life-saving for me does not seem logical.

Doc A seemed to accept all that in consultation. Our first priority was to change what he (correctly) thought from examining a week-old x-ray was an improperly placed tube. The week-old x-ray was from a consultation with Doc B, the doctor who had installed that painful tube. B didn't see anything wrong, but A had viewed it and immediately called me to tell me to come in and get it replaced since it looked all wrong to him. So, the Mic-Key tube wasn't the immediate issue anyway.

Then I got in the x-ray room and up on the table under the fluoroscope for the procedure. They took a preliminary look and found my wrongly-placed tube had migrated since the week-old x-ray and looked just fine where it was. (Possibly because I was avoiding food at all costs.) Suddenly Doc A wanted to leave it alone, or put in the Mic-Key. He believed the pain issue solved and had ticked it off his mental list.

I was laying prone on the table, unable to speak while horizontal, as is often the case with my trach. He was pushing for the Mic-Key, explaining how simple and attractive, how less-complicated and more comfortable it would be. The x-ray tech and assisting nurse chimed in.

"Just nod yes and we'll put it in," Doc A said. "Just nod yes. Just nod yes."

Fuck that, eh?

My personal nurse stepped in and said I needed to sit up to speak my mind. So they propped me up enough that I could tell them, "No. No no no no no!"

Get this painful thing out, please. Give me what has worked fine for the past year-and-a-half.

Doc A argued that we could put in the Mic-Key now, and I could always come back and reinstall a G-J PEG if I had trouble down the line. No problem. We'll change it when you say.

"I'm tired of being hungry," I said. If I have stomach trouble I want food that same day, in my jejunal tube.

The x-ray team tried to persuade me: "The longer you have a tube, the more trouble it is. We see this all the time. The Mic-Key is just a cute little button. You'll hardly notice it's there. If it doesn't work you can always come back."

"I've been back. I was here last week. I'm still wearing a damn diaper from the diarrhea-causing contrast dye* from that useless visit. I am hungry. I'm tired of being hungry today."

Doc A did change the tube as I wished. Reluctantly but kindly. And it's worked perfectly ever since.

But when they were saying this: "The Mic-Key is just a cute little button. You'll hardly notice it's there."

Here is what I heard: "If you work harder, you won't need a wheelchair at all. Won't that be nice?"

And: "Show me someone who can't walk, and I'll show you someone who's depressed."

And: "Wouldn't it be great to get off the vent and not have to lug that thing around?"

The answer: Appearance and conforming to the social norm is not in the interest of my health or quality of life. Sitting down to move through the world, when I finally did that in 1983, was a huge relief to me. I could engage with the world rather than being exhausted with the effort of just showing up. Ditto for the vent. Having energy is not depressing in the way that feeling like you're so short of breath you might pass out drags you down.

I don't know what mix of good medical advice and pressure to have me meet an able-bodied norm fueled Doc A and his x-ray staff. I know both were present, as well as A's apparent failure to listen to me in that consultation. In addition to Doc A's expertise in righting another doctor's wrong, here's what I take away from that outpatient visit: I am never safe. They may not be listening to me. They will ambush me when I am least able to speak for myself and try to do their own thing. Their actions will be motivated by medical knowledge and able-bodied assumptions about what I want and need. I am never safe.

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*Dye injected into the feeding tube shows up on the fluoroscope to assist proper placement. Until it works its way from my very slow-moving digestive system, it's all liquid poop.

The DaDa Awards

Liz Crow and her Roaring Girl Productions is my biggest blogging failure. Liz and I first exchanged emails well over a year ago and I volunteered to interview her and discuss her work. I linked to clips of one of her award-winning short films, Frida Kahlo's Corset back in July on the 100th anniversary of Kahlo's birth, but have never managed to cough up interview questions for Liz to answer.

And I still haven't done that. Nor have I actually seen her full productions beyond the generous info at her website (that info includes film clips, stills, and scripts, by the way). But let me list a few of the many things that fascinate and thrill me about her work:

1.) Her documentary film The Real Helen Keller explores the famous woman behind the iconic deaf-blind celebrity. Here's the film script (.pdf), which is an excellent read by itself:

Narration: Helen was one of the first people to understand that charity was not the answer. She recognised that disabled people lived in poverty because they were excluded from jobs and that poverty in turn created illness and impairment. She argued that what was needed was radical change.

In an era when venereal disease was a leading and unmentionable cause of blindness, she was willing to campaign on this in the press.

Georgina Kleege (author of Blind Rage): People were scandalised when she wrote about it, because she had to write about venereal disease and sexual promiscuity and issues she wasn’t supposed to think about. But at the same time she talks about the issue obviously as a woman’s issue, a woman’s health issue. She also perceived it as an economic issue because she understood that more affluent women would have access to better healthcare, so for her it was information that needed to be given to less affluent women, so that they could make demands of whoever was providing healthcare to them. So she had a mind, it seems to me, that made these sorts of connections that other people weren’t making.

2.) Her short experimental film Frida Kahlo's Corset.

3.) Her project to design the Access Tripod, a tool that would allow wheelchair-using filmmakers to run a handheld camera themselves instead of directing someone else to capture their creative vision.

4.) And her experimentation with ways of making films more accessible to all viewers. Anyone who has ever tried to use the captioning feature tacked onto a commercial film DVD has experienced how separate the accessibility features are from the film itself. Sometimes the captions are ridiculously inaccurate*. Sometimes text is unreadable or descriptions incomplete. Often, it's not an available feature at all. In my family, that means one person who is hearing impaired misses out on much of the dialogue and the shared experience is lessened for us all.

Liz's company is exploring new ways of using captioning, sign language and audio description (ACS) as an integral part of the creative process of her films. Does it make me a film geek that I find this incredibly exciting? Maybe.

Anyway, Liz Crow has been short-listed for a DaDa Award under the category of "New Media" and it's time for the public to vote. The DaDa Awards are sponsored by NWDAF, the North West Disability Arts Forum, based in Liverpool, England. NWDAF is dedicated to promoting equal access to art for all disabled and deaf people, from celebration of disability culture within art to employment to full audience access.

Anyone can vote. Vote before November 27. And check out the other nominees in all eight categories too.

Other links about Liz's work:

Netribution Film Network interview with Liz Crow about Frida Kahlo's Corset

21 Things to Remember, a short film by Liz Crow (link is to "clip 1" with "clip 2" available below it providing audio description)



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*One of my all-time favorite films, Jesus of Montreal, has captioning where something like this frequently occurs: The character on screen clearly says, "I'm 18 years old" while the text just below reads "I'm 23 years of age."

One more photo

These group action pics give me happy chills.



Image description: From observer rachelleb, this color photo is taken from several stories above the street of dozens of ADAPT protestors , mostly in wheelchairs, in the far right lane of Chicago's State Street rolling single-file toward the headquarters of the AMA this past Monday.

Ad Council "Crutches" PSA

The Ad Council has a campaign called "Don't Almost Give" and a series of public service announcements that includes one called "Crutches." Here it is with the other five ads at their website -- it's the second one. And here it is at YouTube:



Description: The 30-second ad shows a outdoor cement staircase and a man on wooden crutches slowly climbing the stairs one step at a time. He climbs about 6 steps during the brief ad. The male voiceover: "This is a man who almost learned to walk ... At a rehab center that
almost got built ... By people who almost gave money ... Almost gave ... How good is almost giving? About as good as almost walking."

I heard about this ad on a disability listserv, but eeka at One Smoot Short of a Bridge has already written on the condescending attitude. She sums it up very well:

Sure, the guy deserved to have better care, and presumably could have recovered more fully. But the inaccurate and pitying language needs to go. What's he doing right there in the film clip? He's walking. He's getting places. He's living his life. Even if the reason for his disability was something preventable that we should be fighting to change, the way to accomplish this isn't by describing the way he gets around as "almost walking." I suppose it might be different if he were a real individual who personally describes his disability in this way, but since he's an archetype, it comes across as describing people with disabilities as "almost" doing things. This kind of view can be dangerous, because when we're all sitting around a table, if we're stuck on the idea that one of the people "almost" walked to the meeting, we're going to unconciously feel that he has less to offer than people who fully got to the meeting, even though we're all there in the end.

Yes, the road to hell is paved, but that doesn't mean it's accessible

Good intentions are tricky. With philanthropy, you can get so invested in your own self-righteous helpfulness that you fail to see you aren't respecting the objects of your charity and their needs. On a personal level that could be called narcissism. On a broader level, it is the annual MDA* Telethon in the United States, hosted by comedian Jerry Lewis.

The telethon has historically relied on pity to sell the need for a cure and Lewis is the unabashed champion of portraying disabled people as pathetic victims and unemployable "half-persons" for the cause. He's also completely unapologetic about demeaning disabled people to raise cash. Never mind that pity never helped any disadvantaged group of people gain their own place in the world. Never mind that he's raised billions for that still-elusive cure while disabled folks languish in institutions and remain largely unemployed because of societal barriers maintained by attitudes like his.

Actor Michael J. Fox, who lives with Parkinson's disease and raises funds for research on it, once said "I feared pity because pity is a step away from abuse." Fox has also stated that his life goes on without a cure, and he's been his own spokesperson, forthrightly showing his impairments while engaging the public thoughtfully and open-mindedly on the related politics of stem-cell research. He's been anything but a pitiable victim, even though he is fighting the clock.

Fox knows pity is harmful, and he's not wrong about it's relationship to abuse. For one thing, a life that is considered hopeless without a cure is held rather cheap. But more to the point on good intentions, when told repeatedly over the years by many former MDA poster children that the telethon experience is demeaning and damaging, Lewis shifts directly from pity to verbal abuse. Over and over again.

Don't believe it? Here's one vague apology the MDA issued to try to shield itself from the damage it's spokesperson causes**, even as they keep him on the job. The offensive remark the apology doesn't really mention is when Lewis said: "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

Jerry Lewis has good intentions, you say. The money is for a good cause so it doesn't matter what message brings in the dough. Not every disabled person agrees -- we're a very diverse lot -- but I say the price of pity is far too high. Jerry Lewis has good intentions? I know where he can go with them.

Image descriptions:

The banner at the top of this post is for this Blog Against the Telethon event. It reads, "Until There's a Cure... There's a Telethon: Blog Against the Telethon -- Abolish Charity and Cure Mentality". The text is bold over a black-and-white photographic background of a little blonde girl's face close-up at right and Lewis in a tuxedo pointing a finger toward her downstage at left.

The second image is a color photograph of a person in a manual wheelchair wearing a black t-shirt with bold pink lettering that reads "Piss on Pity" while holding a sign that reads "Dump Jerry". It's taken in 2003 by Tim Wheat of MCIL.

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* Muscular Dystrophy Association

** Other damage? In 2000, Jerry Lewis said this at a comedy festival: "A woman doing comedy doesn't offend me, but sets me back a bit. I, as a viewer, have trouble with it. I think of her as a producing machine that brings babies in the world." The Chicago Sun-Times report says that he apologized later to avoid a backlash in fewer telethon donations. Here's the humorous response from several female comedians.

Linguistically disabled?

An article by Mark Aronoff in The Chronicle of Higher Education (available free to nonsubscribers for just a few days) asks the question "In Discussing Disabilities, Are We Linguistically Disabled?" I missed it, but apparently back in June Today show personality Al Roker made a joke about the animated logo for the 2012 London Olympics that had to be changed because it triggered seizures for some people with epilepsy. Roker's comment:

"Remember that controversial Olympic logo for the 2012 Olympics in London? Some folks have complained that the campaign actually sent them into epileptic seizures. Well, we asked you to weigh in on our Web site in an informal poll; those of you who could get up off the floor after shaking around were able to actually log in."

And here's his apology, offered the following day:

"I started joking about it. I want to make this clear — I was not joking about epilepsy or anyone who suffers from epilepsy. ... We understand and know that this is a serious affliction and would never joke about that. ... We were joking about the logo — not about epilepsy. If anybody was offended, I heartily and really humbly apologize."

Well, of course, he was joking about epilepsy and the people who have it. If he'd been joking about the logo only, he'd have made the crack about advertising promotions made by committee or London's competence in planning the big event or the International Olympic Committee needing a doping rules exception for anti-convulsive drugs. It's a fairly typical non-apology apology. He didn't do anything wrong, but he's sorry anyway.

Aronoff asks and offers an answer for the question of why Roker's joke created a furor:

There are two reasons. The first, much discussed, is Roker's hypocrisy. Roker was one of the most insistent critics of Don Imus's infamous "nappy-headed ho's" comment, which eventually led to Imus's dismissal. Why, some ask, should Roker not be held to the same standard? The second reason, less discussed but worthier of comment, is the taboo status of disability in American culture and especially public language.

Over the last two decades, disability has become the most taboo subject in American society. We seem unable to reconcile the fundamental tenet that all men are created equal with the equally powerful new admiration for physical and emotional perfection that drives so many of us to plastic surgery and Prozac. To a linguist, though, regardless of the cause, the evidence is in our language.

I disagree with that second reason for the upset over Roker's comment. Roker was being a hypocrite and should be held to the same standard, but I don't think jokes about the disabled are taboo. I think they're considered very much fair game. Witness the frequent use of "retarded" by high profile comedians like Jon Stewart or the common reference to some politician's or celebrity's poor decision as "crazy." I think this particular joke by Roker was about having a seizure -- a specific physical and medical event -- which is distinguishable from being a person who has seizures. Joking about having seizures is perceived as like wishing someone bad luck or misfortune, and that's what was considered in poor taste.

Aronoff goes on to note that taboo subjects are sometimes treated with complete silence or discussed through euphemisms. "A good euphemism," he says, "should always sound a bit peculiar, allowing us to create a distance between ourselves and the subject, as if we are saying the word in shudder quotes or picking it up with tongs." Think "physically challenged" or handi-capable."

Aronoff also states that a taboo subject can be identified by the instability of terminology used to discuss it, like the evolution of terms for race ("colored," "black," "African-American"). I'd agree with that, as far as it goes, but I think this instability also indicates efforts to speak the unspeakable and expresses changing cultural attitudes. If someone refers unironically to "colored people" or "crippled kids" they're not simply using antiquated language, they're displaying a blatant failure to see or embrace current (or emerging) cultural norms. Language use is a barometer of an individual's social beliefs.

Aronoff continues:

The disability taboo is part of a larger societal trend to taboo all perceived hu-man defects, all departures from physical and mental perfection. That larger taboo has led to one of the strangest and most notable euphemisms in the history of any language or culture: the "people (living) with X" construction. What is most interesting about that euphemism is that it is not a single expression but a frame that allows speakers to construct an entire family of euphemisms, since X can be any tabooed condition, and the word "living" is optional.

The construction appears to have started with chronic diseases, in such expressions as people (living) with cancer/AIDS/ADHD/etc. One rationale for this way of putting things was that by literally placing the person first, not the condition, we are de-emphasizing the condition. Another was that it allowed us to avoid the degrading term "victim," as in "cancer victim." The "people (living) with X" construction quickly moved beyond chronic diseases to stigmatized human conditions that had always been described with adjectives, like (mentally) retarded. Now they are people (living) with mental retardation. More broadly, where we formerly spoke of disabled people, we now say people with disabilities or, following the California examples, people with nothing but abilities, which, by deleting the negative prefix dis-, allows us to remove ourselves even further from the unspeakable. Finally, we have a simple way to talk about disability without mentioning it at all!

I wish there was a disability equivalent to the term "queer." Something to express difference and the vast spectrum of ability that "disability" doesn't indicate. "Crip" and "gimp" are mobility-specific, but do have a directness that's needed to counter the euphemisms. George Carlin has an old comedy bit about how euphemisms get longer to distance the discussion from the impact of the idea -- "shell shock" became "battle fatigue" and then "post-traumatic stress disorder." Syllable-count works as bullshit detector, really. So, where's our one-syllable word?

What would that look like?

In the recent discussion of Aimee Mullins in Sports Illustrated, Sara, Trin and I have been debating Mullins' portrayal in that mag, and the portrayal of amputees and disabled people, generally, by the media. In the sidebar at right I've got a category for analysis of media coverage of disability, Wheelchair Dancer frequently looks at NYT coverage (examples of that here, here, and here), and there's a thoughtful discussion at Medical Humanities Blog, also about a woman amputee excelling in her career.

So, what would positive media coverage of Aimee Mullins, specifically, look like? How would someone laud her successes without putting her on the supercrip pedestal or fetishizing her amputated limbs either textually or with photos? Here are a couple alternatives to the SI story's sexualized supercrip slant:

• Photographer Lynn Johnson offers twelve photos of Mullins' life -- athletic, personal, typical and extraordinary in so many ways.


• The Women's Sports Foundation, where Mullins is currently serving as president, interviews her about athletic training, being a role model, advice for disabled girls, runway modeling and changing attitudes.

And here is Petra Kuppers on "Addenda? Contemporary Cyborgs and the Mediation of Embodiment" where she specifically analyzes a fashion photo of Mullins wearing those old-fashioned wooden prosthetics she briefly mentions in the SI article. It's a complex look at disability, feminism, Mullins' agency or complicity with the image, "false consciousness" and media portrayal both of disability and femininity. I'm too short on time and energy just now to write about it, but it's right on topic here.

Visual description: There are three photos here. The first is one of Lynn Johnson's collection on Mullins and is in black and white. Mullins stands in her athletic uniform and high tech racing prosthetics on a race track facing a woman holding a microphone and two men with tv cameras on their shoulders. This is a media interview at the 1996 Paralympics in Atlanta.

The second photo is the fashion art pic Kuppers analyzes and this is her thorough description: "The large colour photo presents Mullins sittting on the floor, her head in her hand in a defeated or melancholic position. She appears squeezed into the frame, contained by the photo’s borders. The colours of the image are brown and beige, earthy, taking up the blond of Mullins’ wild hair and echoed in the make-up. Mullins is wearing various stiff items of clothing, all of which extend out of the photo frame. The clothes are referenced in the accompanying text, in accordance with the generic conventions of fashion photography. The comprise of: a calico-coloured skirt skeleton reminiscent of whalebone crinoline underskirts (crinolin [sic] frame, for hire from Angels and Bermans) and a textured close-fitting top (suede T-Shirt by Alexander McQueen) to which shoulder ornaments are attached that look like wooden filigree Japanese or Spanish fans (wooden fan jacket, by Givenchy Haute Couture). She is also wearing artificial ‘mannequin’ lower legs (not referenced as ‘model’s own’ in the picture blurb, but extensively discussed in the Press). The legs look old and stained, and while one foot with coloured toenails is visible in the frame, the other reaches out to frame-left."

The final photo is Mullins running full-out on a beach with the ocean and blue sky behind her. She's heading down the beach away from the camera and appears to be wearing the exact black bra top and string bikini bottom she wears in the posed studio photo topping the SI article -- that much-discussed other photo.

Not "legless": Ten pairs of legs!

There's been a discussion making the rounds on feminist blogs about a recent Sports Illustrated story on Aimee Mullins, double-amputee athlete, actor, model, most current President of the Women's Sports Foundation and apparently also one of the 50 Most Beautiful People in the World. The SI story uses the "supercrip" stereotype to hype Mullins considerable accomplishments with a lede that first lists her successes and then sets her up on that unreachable pedestal:

Her accomplishments are each impressive enough on their own, but when you take into account that she's done it all on silicone and titanium legs, she's just making the rest of us look bad.

Accompanying the text are several photos -- one, thankfully, showing her actually competing athletically -- with the most prominent pic being the topic of bloggy discussion. Here it is, at left. It's a full body black-and-white shot of Mullins in profile, positioned on all fours as if at the starting blocks for a foot race. She's wearing high-tech, below-the-knee prosthetics, a black bra and string bikini bottoms, with a wind machine swirling her hair in the air. She's not on a race track. This is a posed publicity shot.

Now, I do hesitate to just post this photo, but as it happens, Mullins is already the number one Google image search leading to my site, for a magazine cover photo she modeled years ago and which I never did actually post here -- only linked to prior to now. But, what the hell, this is that photo too:

Photo description: It's a magazine cover with the bold capitalized words "DAZED" across the top and a background of all white. Mullins wears form-fitting athletic pants and studio lighting accentuates the curve of her buttocks. She's got the high-tech prosthetics that look much like wide flat metal hooks, and she's not wearing anything else. She's turned away from the camera enough that her upraised left arm allows her to peek over her bicep at the camera and her left breast is in provocative profile. At knee height, down by her prosthetics, runs the capitalized text "Fashionable?" though the word is split on either side of her body so it could also read "Fashion Able?"

This is the photo The Gimp Parade routinely gets 100 hits/day for. Well, it competes for most hits with this photo of Marine Lance Corporal James Blake Miller, taken about a year ago in Fallujah (make of that what you will):

Visual description: Taken by Luis Sinco for The LA Times, it's a head shot of Miller, wearing a desert camouflage-colored helmet, face smudged with camouflage war paint, eyes staring tiredly, and a cigarette hanging from his lips. Smoke swirls around his face. The news story, linked just above, explains why this photo has been dubbed "Marlboro Man."

I posted a link to it for Memorial Day, 2006, when I was noting that the war continues to disable people and leave them, both here and in Iraq, with less than they had before. This pic is a sort of porn too really, you know.

Anyway, here are links to discussion at IBTP, Bastante Already, Fetch Me My Axe, and Trinity at The Strangest Alchemy, here and again here. To skip the PhD version, just read Trin's first link, and maybe the one at FMMA. The feminist tension throughout these posts seems to be basically one of radical feminist privileging of a strictly feminist media analysis over one that would be more of a disability-feminist analysis.

Sara of Moving Right Along comments at IBTP:

It is my fond wish that amputees be seen as just another flavor of ordinary, not extraordinary or freakish just because we don’t have all our original body parts, so ordinary that people don’t even blink when they see us coming. If we could achieve this, it would make our lives easier and richer because we could spend less of our precious, irreplaceable lives fending off other people’s projections and could instead just get on with it all. And getting images of us out there in mainstream publications showing various among us doing ordinary or extraordinary mainstream things that would be just as ordinary or extraordinary for anyone else, things like competing in sporting events like ordinary folk, even being extremely successful at it as some people are, is definitely one very good way to go about this. It is!

However, pornification does not equal normalization.

Even more to the point, in a later comment, Sara adds:

... I have to say that I pay as little attention to acrotomophiliacs (the fetishists you mention) as I possibly can. My introduction to them was via a year-2000 article on apotemnophilia (no longer available online without a subscription) which I found at the Atlantic Monthly website in 2003. This article was the first thing listed in response to an AltaVista search I’d run as my first step doing research to determine whether I’d rather have my leg off or die of cancer that year, which doctors had concluded by then were my only two immediate choices.

Fortunately, my second result sent me to a prosthetics site showing a young woman who’d just climbed a mountain in her prosthetic leg. The blurb about her didn’t focus on her ass and say whether she’d ever modeled.

Living as a woman, sexual objectification and obligatory attempted submission to fuckability/worth standards are implied, no matter what. The objectification I experience as an amputee is distinct from the objectification I experience as a woman in that it is not always sexual. For clarification of what I’m talking about, please see these posts:
Talking Points: An Object Lesson at my site

and these posts and their comments from the last Disability Carnival:
Disabled Performing Pioneers by Marcy at Dirty Laundry
and
Disability and Media by Daniel at Medical Humanities Blog

Whether we are talking objectifying amputees and other putatively or definitely disabled folks, women or men or children, sexually or otherwise, the problem is the same: people not seeing other people as people first but as objects and symbols they then have to be re-taught are human. I expect Twisty would say it all happens because of the dominance engine that fuels the patriarchy, though I also expect she’d put it better.

You might think it’s only bad when you’re being sexually pornographied. However, there are lots of ways to demean people by objectifying them. Consider this: Yesterday, in walking from my car to the post office, maybe half a block, I had two perfect strangers come up to me and basically tell me I was a brave woman for leaving my house. One came up from behind asking “How’s the leg working out for you?” (And I was wearing really cute shoes!) The other one told me right to my face, with tears in her eyes — you know, instead of “Hi, how are you?” — “You’re a brave woman!”

This kind of thing happens to me everywhere I walk. I would find it inhibiting if I weren’t already so shopworn.

When I was young, I couldn’t leave the house without being pestered by some man about my tits and my ass. Now I can’t leave my house without being congratulated for my [projected] courage by complete strangers.

The objectification escalates. And it’s all the same dynamic, even when it’s not strictly sexual.

Mainly, I wanted to put Sara's remarks in gimp context, so they wouldn't surrender to the archival oblivion at Twisty's. Trin takes issue with other IBTP commenters who suggest photos of Mullins in SI would be better if she were au naturel, that is sans prosthetics:

Heaven forbid your assistive technology make you hot. It's supposed to look all klunky and weird and alien so we can pity you. Didn't you get the rulebook?

Personally, I'd love to see Sara and Trin hash this out as two disabled women (though I know Sara cringes a bit with that identification) who seem to disagree. My guess is that they don't so much disagree as they see different aspects of the radical feminist analysis that need to be emphasized from a disability perspective.

My perspective: Mullins appears to be the amputee soft-porn that causes most people to show up at this blog, and I suspect they're not hanging around to read the latest on Kevorkian or the anniversary of the Olmstead decision. And blogging ego aside, I do have a problem with that.

On the content of the SI article itself, this is what really caught my eye:

[Mullins] owns 10 different sets of prosthetic legs, from her titanium sprinting legs ("my brother calls them my 'robo-cop legs,'" she laughs) to the intricately carved ashwood museum pieces she once modeled in a fashion show for designer Alexander McQueen.

Share the irony with me: I recently commented on something written by a woman temporarily using crutches and wheelchair who repeatedly referred to her "life without legs." And here's Mullins, a double-amputee who talks about her ten different pair.

I also want to know how she accumulated her legs. Do they all work? Are some spares or gifts because of her relative fame? How many, on any given day, might be useful enough that she decide between them? At one point I owned as many as four wheelchairs and scooters. I think there are three around here just now, but I'm sitting in the only one that is suitable for anything but an emergency. The one in the garage (bought around 1990) may not work at all, and the one in the basement (Quickie manual, circa 1985) would cause me great pain and discomfort if an emergency arose and I found I needed to use it, though it would get me from here to the can.

Are Mullin's ten pair extravagance or simply spare parts, like mine? And is there anyone in the world who can claim more pairs of legs than her? I mean, there are lifetime amputees who've never had a single prosthesis or wheeled chair. Does Mullins have crutches and chairs, as well? That would be the story here for me. Well, unless we can just talk about an impressive woman with many accomplishments, without the supercrip theme.

Life without legs

A commentary in the recent Minnesota Women's Press by Ka Vang on being temporarily disabled is entitled "Life without legs" and refers to said "leglessness" within the brief text at least three times. Vang's temporary disability is not actual leglessness (not that there's anything wrong with that, eh?) but the inability to walk unaided:

For the last month I have been walking with the help of crutches, a wheelchair and cast. Being temporarily disabled gave me the opportunity to experience life from the perspective of a woman without legs.

It's not that I don't understand the radical rethinking sudden physical impairment can have on a person's sense of self and body. I understand how the sudden inability to walk around easily like you did, say, last week, can be psychologically experienced as "losing your legs." It can even be a humorous over-dramatization that helps a person to cope. Black humor and all that. But, really, the temporary need to use crutches and a wheelchair does not merit a headline and many references to "life without legs."

Is that how Vang sees people who have less temporary needs for crutches and wheelchairs -- as missing body parts simply because those parts don't work at optimum levels? It feels like an erasure of reality on several levels.

Vang does have some valuable insights, the sort of "Oh! Duh!" realizations impairment offers most people if they experience it and reflect on it in a larger context. And that's nice to see:

I work as a diversity director for a higher education system. Diversity is my life and passion, so I thought I understood everything that there was about diversity groups. I was wrong. About three weeks into my life without legs I had an epiphany. People who are enabled have accommodations every day. For example, when we have a meeting, everyone is seated around a table. We are seated on chairs because standing for an hour-long meeting is just too much for a person who has legs. The legs get tired, so enabled people are accommodated by having chairs to sit on. Another example: When people with good vision enter a dark room we can't see because there is no light. So we turn on the lights. We are making an accommodation with the lights so we can see in dark places. A person in a wheelchair would not need a chair. A person who could not see would not need lights. We, enabled people, give ourselves accommodations every day. Why can't we give accommodations to those who have a disability?

Just another five weeks to go before I can walk without a cast. Although life without legs was extremely difficult, I feel it made me a better person.

I just wish she didn't feel the need to amputate her limbs (and by extension, the limbs of the rest of us who don't walk on our own) to have this epiphany.

h/t Mark at Norwegianity