Frequently bizarre happenings

Agent Fang at Fangworld explains her latest weird experience while traveling and asks the question:

I sometimes wonder if I'm unlucky when it comes to working away accomodation, or if these frequently bizarre happenings are something every disabled person experiences?

Generally, I do believe disabled people experience frequently bizarre happenings for a variety of reasons. As disabled dude Neil Marcus once noted, "disability is not a 'brave struggle' or 'courage in the face of adversity'... disability is an art. It's an ingenious way to live." Any situation requiring an original, creative approach is probably likely to end up being bizarre more often than a situation that doesn't require ingenuity. I can fairly say that as a person who uses a wheelchair I have had hundreds of experiences both social and physical that the nondisabled people I know have never experienced personally.

Example: I've been carried into a building and up three flights of stairs by a firefighter. There'd been a kitchen fire in someone else's apartment and the elevator couldn't be turned on again until the building inspector came the next day.

I have more, of course. The most recent are from my extended hospital stay, probably because many things happening in a hospital are bizarre to most people. But more on those another day.

Am I right? Agent Fang isn't unlucky, she's disabled and therefore lives in the world of weird. Disabled or not, do you have frequent bizarre happenings and what do you think is their cause?

Talking language

Recently, Bookslut's Jessa Crispin said this while commenting on Suzanne Braun Levine's Inventing the Rest of Our Lives: Women in Second Adulthood:

The last ten years or so has seen in a rise in what I like to call the Special Olympics version of feminism. Nothing you do is bad or wrong, because it's all about finding the authentic version of you. (Thanks, Oprah.) Leave your husband and abandon your children in order to go have casual sex with a yoga instructor? Good for you, you're getting in touch with yourself as a sexual being. Give up sex entirely and tell everyone that (solo) flamenco dancing is all you need anymore? Good for you, you're rejecting society's pressure on women to be sexual beings. Quit your high paying job and become a stay at home mother? Good for you, you're doing the most important work in the world.

According to the City Journal, this version of feminism has taken over the brains of formerly influential and important feminist thinkers. As recently stated by Marjane Satrapi, "I don't know why people, when they become older, become stupider."

The Special Olympics of feminism. Taken with the Satrapi quote, my guess is Crispin means that the last decade of feminism has been a competition of stupid beliefs about what empowers women. Perhaps she's thinking it's a competition among "retarded" beliefs, which really isn't synonymous with "stupid."

Noting the examples Crispin says are about feminism (I'm not familiar with either of the books linked to at Amazon), I'd call it a competition of amusing political justifications women make for their lives. Crispin is snappier but crueler. No interpretation of her phrasing suggests anything but unkindness in her reference to developmentally disabled folks.

Not that the joke is original. Unfortunately, it's all too common. Kestrell at Blog of a Blind Bookworm noticed it too.

What we really look like

I've been thinking a lot lately about what people with disabilities look like and how it influences our interaction with the nondisabled in public. What disabled people are supposed to look like is part of the interaction too. I've seen several films recently where appearance was definitely part of the tension of personal encounters, and I spent yesterday (101° in Minnesota, yo!) out and about in Minneapolis paying attention to possible changes in how nondisabled strangers treat me. When I thought of it. Mostly I just had fun.

I had my quarterly appointment to get my PEG tube changed for a newer shinier one. I say that like I've been doing this for years, but I've only had a feeding tube since November when I nearly died of malnutrition, my stomach refused to do any more digesting, I got aspiration pneumonia from constant vomiting and took a helicopter ride. Then I woke up with my new friend, PEGgy. This particular incident began with a delicious Chipotle's burrito and I now mourn the fact that the thought of eating another someday only makes me think of hurling.

Anyway. The tube gets replaced every three months. (Incidentally, Dr. Perky had told me they never need replacing when I had expressly told her mine was starting to feel floppy and asked if she would check on when the switch might need to occur.) So every few months now I will migrate into The Cities to the hospital where my stoma was born for this amazing procedure. And it is amazing -- I watch on an x-ray monitor, completely unsedated, while someone pokes a guidewire down the tube, deflates the balloon in my stomach, pulls out the old tube and threads in the new one like he's snaking a drain. It takes less than five minutes and it's totally cool to watch. But I digress.

Anyone who has experienced both limping and using a wheelchair will tell you that public reactions to the two appearances differ. Same with manual chair versus power chair, white cane versus guide dog, invisible impairment versus visible one(s), and, Ballastexistenz claims, with dog versus sans dog for her as a person with autism. Visual differences cue stereotypes, and breathing on one's own versus towing a ventilator on my scooter also makes a discernible difference. Most notably, even fewer people are willing to make eye contact. The only spontaneous smile I received from someone I didn't need to interact with was from a young Somali woman selling beautiful silk clothing at the newish Midtown Global Market, also known as the most fabulous food court in the entire state, by the way. Jamaican jerk chicken. Mmmmm. Again, I digress.

(Oh, wait. Can anyone familiar with Pocky and the astounding variety of flavors it comes in tell me what's up with the "Men's Pocky"? Is that man-flavored or candy viagra, or what?)

Okay, so I know it's fear of difference and the old "there-but-for-the-grace-of" thing. And that's fed by a history of segregation and institutionalization. I'm 37, by the way, and Americans in wheelchairs who are my age are pretty much the first generation allowed to attend public school with everyone else. Hollywood hiring beautiful nondisabled actors to portray us on film doesn't help fearful people get used to being around actual gimpy bodies either.

Which brings me to these photos of the New York celebration of the ADA's anniversary last week. Real people. And some hot transportation I covet. Great photos from Aleja at No Pity.

Saturday Slumgullion #6

• John Carr at The Main Bang writes about the lack of access at work for air traffic controllers in wheelchairs. It's not always progress that makes a place accessible -- without vigilance, building and equipment improvements can and do ruin access for disabled people. Carr notes how this will cost one man his job. (Another example of "improvements" ruining access: Movie theaters with new stadium seating.)

• BBC Radio has a new comedy program called Vent, about the dreams and thoughts of a man in a hospital on a ventilator and in a coma. Despite the pun of the title, the vent itself is not synonymous with coma and I wish it had a different name. To read the BBC blurb about the show, scroll halfway down the page, here.

• Medical Humanities hosts the newest Grand Rounds carnival from the blogging medical community, which includes several discussions about the mercy killing/euthanasia arrests of a doctor and two nurses in New Orleans for actions during Hurricane Katrina.

• Ruth at Wheelie Catholic writes about being a quad and trying to pass as somewhat less impaired:

"In fact, it can be fun to pass as a para. If you're clever, you can fool people some of the time. Until you try to eat in front of them or whatever. Or go in your wallet. Or put a key in a door.

When I get 'caught' trying to pass as a para, some people look at me and say 'Your arms are affected too?' Sometimes people start to cry. I hate that."

• Denise at BlogHer relates the story of former blogger Madrigal of Agony who was inexplicably "dooced" out of her disability coverage for blogging about her daily pain.

• BallastExistenz writes about her personal experiences with forced drugging to control her autistic behavior. Also, some info about MindFreedom International, the Amnesty International of biological psychiatry.

• The Phat Girl Speaks shares what I think is a hilarious story about a boss wary of not being politically correct.

• Wheelchair Dancer discusses how the ADA not only doesn't always guarantee access to wheelchair-using theater-goers, stage access is extremely rare. Of course, this makes employing disabled artists problematic, as well. A long while ago, I noted this situation at the Kodak Theater where the Oscar Awards take place.

Sweet Sixteen for the ADA

One of my old posts, looking at a French ad campaign, looks at a completely alternative view of disability, where accessibility is an integrated part of life.

Often, the argument against compliance to the ADA is that disabled people are demanding something "extra" and their quest for equality oppresses business owners or employers who must suddenly provide something additional to the disabled person that no one else is asking for. The implied belief is that the nondisabled person never asks for anything "extra," though this is not really true. Rather, the built world is "conceived" to include the extras they might need.

The excuse of architecture examines how inaccessibility can create the justification for discrimination.

The belief that disabled people's exclusion from mainstream society is benign neglect is mostly an illusion. Ask any architect if he considers who will use his building when he designs it. Consider that disabled folk have been a part of the human experience since time began. Modern science has altered the number of people surviving health crises and age, and it's given us elevators and TTY machines, but ramps existed before steps were invented and yet we lack them everywhere.

But for a truly exciting list of writings on disability, check out Disability Studies, Temple U,'s latest blog roundup.

Update on Stevie

About half the people finding their way to this site in the last week have been looking for one of three things: amazing variations on "gimp porn", more information about the talented writer, lawyer and crip activist Harriet McBryde Johnson, and an update on Stevie, the subject of Steve James' 2003 documentary film. With a little google research, I can satisfy your curiosity on the latter.

For a recap on why Stevie was a film of interest for this blog, check out my review of last August.

For the update on Stevie Fletcher, the man featured in the film, check out the sidebar here. You'll have to scroll down quite a ways. Among the revelations of a 2005 interview with the man who directed Stevie is this:

Have you talked to Stevie lately?
We went down in December to visit him in prison, and we're gonna go before Sundance. He's doin' okay. I think for being in prison he's doing fine, but he is gonna serve his entire 10-year sentence--just as I say at the end of the film, it's still true that he has not been an ideal prisoner. And I still have not been able to show him the film.

Go read the rest.

Utah neighbor's offensive sign targets autistic teen

Carrie Heaton does her best to keep watch over her curious and cognitively disabled 13-year-old son without being too confining.

Still, the Nephi teen slips out unnoticed on occasion and wanders the neighborhood, sometimes entering and rifling through people's homes, according to police. Neighbors to the south have complained.

But Heaton was surprised Wednesday when long-simmering tensions boiled over and her neighbors erected a sign in their front yard warning, "CAUTION, RETARD'S IN AREA."

Read the rest here.

Saturday Slumgullion #5

• Stuart Hughes of Beyond Northern Iraq reports a more personal story of being back in a war zone covering news for the BBC.

• Popular Science magazine covers the quest by some injured American soldiers for better-working prothestics. There's an informative slideshow explaining current capabilities for artificial limbs versus future hopes for the technology.

• A back injury enlightens a writer in Tallahassee about the daily benefits of an enforced ADA. The 16th anniversary of the ADA's passage is this coming Wednesday, July 26, by the way. It's good to take note of things the law has accomplished.

• Quite likely it's an urban legend, but the story of a disabled Chinese migrant worker continues to travel the internet.

• A California DUI attorney muses about the applicability of the ADA to drunk drivers. If alcoholism is a disease, is drunk driving a choice for his defendants? I'd sooner muse about why the ADA isn't helping mentally disabled people on death row, but the logical argument is similar.

• Aishwarya at Kaleidoglide compares left-handedness and the need for Southpaw accommodations to disability and accommodations. Interesting approach.

• Ragged Edge readers discuss the man in New York who claims nude sun-bathing for a skin condition and his rat terrier's companionship for 9/11-caused PTSD are both accommodations covered by the ADA.

• Encarne Conde has a blog that pictures (and discusses in Spanish) all sorts of wholesome crip events.

• Autism Diva discusses her concerns with Kellogg now that the cereal company has teamed with Autism Speaks, the organization responsible for the "disgusting video" Autism Every Day.

• Katja at Broken Clay has the story of how Alaska Airlines supported the 26th annual Disabled Veterans Wheelchair Games by working to fly everyone up to Anchorage. The picture at right is the gimp parade to an airplane.

• Julia Shumko at You Have to be Deaf to Understand describes how the U.S. Social Security system boxes in a disabled person when becoming fully employed means less income and fewer benefits than working just under the income limit SS allows. Via Browser Life.

• I'm Funny Too at Did I Miss Something? aptly explains her feelings about Bush's stem cell veto, science, and the curing of disabled folks. She articulates what I wish I'd said as well.

Spooky new technology

This is no longer science fiction, it's real. I wonder why exactly a bracelet or other external accessory containing the same type of information has been bypassed in favor of an implanted device. It presents some tricky issues for disabled and chronically ill folks if this becomes popular in the medical community.

Technical Question

Last year, I had been adding html ALT descriptions to any images I posted. Then I switched from Explorer to Mozilla Firefox and those ALT descriptions stopped showing up. Only I didn't realize until recently that it was my browser that was less accessible for people who need text descriptions of images. Does anyone know either a patch for Mozilla or a different way to tag images so that visually impaired people can get these descriptions regardless of what browser they use? Any help would be appreciated.

If in Chicago or The Real Gimp Parade

Ah, I miss the Windy City. I went to high school in that bastion of yuppieland, Naperville, which I don't miss all that much. But Chicago itself? I often feel homesick despite my Minnesotan origins.

This weekend is an excellent time to be in Chicago. The third annual Disability Pride Parade is Saturday, with a noon program in Daley Plaza, where the parade ends. Also, Saturday night there is a mini-film fest that looks exciting.

If I could be there, I'd also stop up at Women & Children First to browse, and grab some dolmeh felfel for dinner at Reza's, both in Andersonville. Ahh, Chicago!

Photo from the 2004 parade. See others.

The Crip and the Fat Chick

This is the best thing I've read lately. Go. Read.

Via Sinister Girl

Explanation of Benefits or Why I'm a Bad Risk for Employers

From the private insurance company which would never have accepted me as a client if my parents hadn't gotten me coverage at birth:

Explanation of Benefits:
THIS IS NOT A BILL

Hospital A
....
11/14/05-12/08/05
Hospital Incidentals 32,241.65
Hospital Incidentals 518.43
Hospital Incidentals 13,860.65
Hospital Incidentals 3,926.12
Hospital Incidentals 195.39
....

[Nine pages of this]

....

Hospital A may bill you: $459,880.33
Hospital B may bill you: $27,347.44
Hospital C may bill you: $10,539.63

....

Studies have shown that the Sonicare toothbrush removes more plaque than brushing with a regular toothbrush. For more information, go to www.brushwith[privateinsuranceco].com.

Because the first thing you think about after learning you may be billed a half million dollars is whether or not you are using the best toothbrush.

American Association on Mental Retardation votes for name change

It's been a long time coming. The American Association on Mental Retardation, founded in 1876 (and then called the Association of Medical Officers of American Institutions for Idiotic and Feebleminded Persons), voted overwhelmingly last month to change the organization's name to the American Association on Developmental and Intellectual Disabilities.

AADID President Valerie Bradley said the change was driven mainly by individuals with developmental and intellectual disabilities who are part of the self-advocacy movement and dislike the term "retarded" because of the stigma connected to it. Ragged Edge has the story on the vote and the name change trend.

For the last year or two, I've closely followed any use of the terms "retard," "retarded," and "idiot" I've seen in the blogworld, sometimes speaking up but often just observing the commentary. Even just limiting my surveillance to the feminist blogosphere, there's been perjorative aplenty with opinions about the appropriateness/offensiveness of these terms varying widely. While nondisabled folks are busy debating what's offensive, whether language should be policed, and if a past medical term can legitimately be considered pejorative now, the name change at the AADID means that the organization is responding to the activism of the people it's designed to serve.

Here's a little history on some of the pressure people with developmental and intellectual disabilities applied to urge the name change: "Self-advocacy" usually refers to the civil rights efforts of people with developmental and intellectual disabilities as they speak for themselves, since historically they've been institutionalized and not considered capable of participating in decisions about their lives. SABE (Self Advocates Becoming Empowered) is a national self-advocacy organization. In February of 2005, SABE was one of eleven organizations planning to gather that fall for a summit as the collective Alliance for Full Participation, but instead SABE lodged a complaint to the other ten, written by Chester Finn:

[Our] executive committee met twice and decided that SABE will no longer be a part of the AFP and SABE will not participate in the Summit because of the ongoing problems of not being treated with respect and because [other AFP members] went back on their word. What kind of problems did we have? There were three major problems. First, some of the AFP members were not respectful toward the SABE board members. We did not feel like we were really being heard.... Second, our level of participation was not as interactive as what SABE wanted.... Third, some of the AFP members decided to not honor our verbal agreement [to waive our Summit fee] and requested the $5,000.

The response, written for the group by Steven Eidelman,The Arc's executive director, was apologetic and hopeful:

We regret any miscommunications or misunderstandings, and we hope that our partnership can begin again. The leadership of the Alliance for Full Participation is absolutely hopeful that reconciliation with SABE can be reached, and we will continue to work to achieve this outcome. Should this not occur, the AFP is committed to ensuring that the voice of self advocates is heard at this Summit.

Finn's elegant answer to the apology consisted of ten demands -- one for each organization committed to helping disabled people -- beginning with the ultimatum that the AAMR change its name:

If the Alliance or individual organizations really want to work with us, they need to do the following:

1. AAMR needs to stop using the word mental retardation and change their name. SABE worked with the President’s Council for People with Intellectual Disabilities to change their name. In the Civil Rights movement, the “N” word was hurtful to African Americans. Likewise, the “M” word is offensive to individuals with intellectual and other developmental disabilities. SABE challenges AAMR to educate their members in order to change their organization’s name.

and, in summary:

SABE is willing to work with you on these issues. If you really believe in our issues and you want to win back our trust, you will join us at the table in achieving the goals of closing institutions and nursing homes, self-determination, individualized services, selfdirected supports, and money following the person. All of these goals are related to making real lives for persons with disabilities.

And once again, in flyer form, SABE reiterates:

We have told you what is important to us
Get rid of the infamous and hurtful “r” word, do not label us
We will not put up with
The “r” word continuing as part of an organization’s name
even as initials
If you are working with me and for me then do not disrespect me

Apparently, one result of this activism was the name change from AAMR to AADID. Of course, the reference to the "r" word being present in an organization's initials refers to The Arc. Although the full name is no longer used, the acronym does still stand for The Association for Retarded Citizens.

Suitcases reveal past of state hospital inmates

Hundreds of dusty suitcases were found in the attic of the Willard Psychiatric Center near Albany, NY, closed in 1995. They belonged to the inmates of the asylum who came to stay and died at the institution, many to be buried in unmarked graves on the hospital grounds.

Frank, pictured above, was a WWII vet from Brooklyn who caused a disturbance at a restaurant in 1945 because he was served a meal on a broken plate. Instead of being arrested, he was committed to a psychiatric hospital by the police. He bounced from one institution to another, spending three years at Willard and dying at a Pittsburgh VA hospital in 1984 at age 74. He had never seen freedom after that day at the restaurant and spent nearly 40 years -- over half his life -- in institutions.

Via Penny Richards at Disability Studies, Temple U., the stories of other inmates, and the poignant photos of the contents of their suitcases can be viewed. It's an online museum that portrays some of the most haunting life stories I've seen in a long time. Follow the links to browse through the collection.

Things that crack me up, #7

In this video of a French talk show where a couple disabled people are interviewed, the interviewer gets the giggles because the man he's talking to has a high-pitched voice. I haven't taken the time to even try to apply my meager knowledge of French to a translation of what's being said. But I find the giggling contagious. The whole thing looks like a comedy skit. What's funnier than someone inappropriately laughing and not being able to stop themselves? Nothing, I say, even though the circumstances may be unkind.

Disabled man's body digitally blurred for TV

Tonight on ABC's Primetime they featured "Adam the Healer," a 19-year-old Canadian who claims to have healing powers. The program talked to him and followed four women who had sought cures through his superpower ability to see and rearrange auras. One of the women is the wife of Canadian soldier, Lieut. Trevor Greene, whose head was split open with an axe while he served in Afghanistan. He was in a coma for three weeks. Sometime after Adam was consulted long-distance, the soldier slowly came out of his coma and now has limited speech ability.

When Adam visited Greene in person, Primetime blurred the entire image of the man in his wheelchair. Not for anonymity, but because he's a "pale shadow" of his former self. Greene appeared to be unable to use his arms or his legs.

Adam wasn't able to stay long with the couple. He was freaked out by Greene's appearance and took the first chance he could to run off. Greene remains in hospital and his prognosis is uncertain, though his wife has faith in both Adam and her husband's full recovery. Her need for his cure probably has something to do with the decision to blur out his video image as a disabled man, though Primetime wasn't completely clear about that.

The most disturbing part of this digital anonymity is that it was presented as an entirely unremarkable and unproblematic response to a severe injury. There's denial here, of course, but what else? What else.

Incidentally, Adam holds workshops for those needing healing, but it says at his website under "rules for the workshop":

6: You cannot bring noisy medical equipment into the workshop.

Apparently, he can't or won't rearrange the auras of people with ventilators. And rule number seven is that you can't show up with a persistent cough. So heal thyself a little bit, then go see Adam for the full cure.

"Exotic amputees" needed for Pirates 3

An open casting call for Pirates of the Caribbean 3:

Seeking Pirates -- men age 18+, all shapes and sizes, all ethnicities: Asian, Spanish, French, African, Syrian, Lebanese, Middle Eastern, Turkish, Armenian, Arab, Persian, Caucasian, South American, Pacific Islander, Eskimo, etc...

You must be an extreme character type! We need extremely skinny, very tall, very short, hunchback, little people, unusual facial features and body types, exotic amputees, albinos, etc.

I have to say that an only male pirate cast bothers me as much as an all "grotesque" cast. Are you odd-looking? We have just the job for you but only if you're a goofy-looking guy.

I'll pretty much go to any film to see Johnny Depp (he's so purty), but what does it mean when the main characters are all flawlessly gorgeous and all the extras are just a new exhibit of circus freaks?

Via No Pity

Things that crack me up, #6

To the person in the Philippines who came here searching for "frog sex porn" -- disappointing, eh?

Projecting fears

An old post on a nursing blog honestly expresses some thoughts about severe disability. Geena, at Code Blog: Tales of the CCU, talks about her difficulty connecting to patients who are quads:

I have a small problem taking care of quadriplegics. Nurses, I think, enjoy caring for certain types of patients and dread caring for other types. I personally find it of the utmost difficulty to take care of people that cannot move.

Which isn't to say that I don't try my best and do a good job. I can attend to the physical aspect perfectly, but I find that I'm completely closed off emotionally. I always try to keep some emotional distance from every patient (although sometimes get sucked in when I least expect it), but with quads I find myself not only keeping distance, but building a big huge wall.

and

I find it difficult to even look a quad in the eye. I feel as though they are in a place that I can't even imagine, that I can't even begin with empathize with. Whenever I look someone who is a quadriplegic in the eye, whatever is staring back at me is simply too much to take on, and so I don't try.

and

But not being able to move yet being fully conscious... that's too tough. It's almost as if they're telling me with their entire being that I will never be able to understand, so don't bother trying.

To her credit, she also says she has educated herself about other situations in order to relate better to patients and she asks for suggestions of writings about quadriplegia. But the comments to her post include a couple by people trying to help her more directly:

I'm not a book about quads, but I'm the real deal. I broke my neck in a car wreck on April 6th 1975. I just passed my 30th aniversary as a quad.

At 46 I'm still very active and alive. I find it very sad that you can't look a quad in the eyes. Do you think we want your sympathy? We are human just like you, with have feelings just like you. I managed to except the life I faced very early on in my disability. Some never do except it, and thus live a very short misarable life. I have been very fortunate to have my family around me. I was lucky enough to also have found love we a beautiful lady. We hade several great years together. We had different ideas about what I should do career wise, so we went our different ways. She married another quad and they were very happy for the 20 years they were together, until he died.

Also:

Good Afternoon, I am a quad of 22 years who after injury earned bachelors and masters degrees, got married, have a child, and work full-time...

If you seek to tackle the issue, you do not have to identify with a quad as a peer-quad, but rather as a peer in life. I suspect that all peoples’ losses, including quads’, combine to frustrate many, including the quads you have met at an arguable low point. My “losses” and thoughts on them include the objective (walking, self-feeding, orgasm from intercourse), subjective (missed personal goal-setting and those losses outsiders think are important), and the reasons why there are losses, real or perceived, such financial or community resource shortfalls or individual internal motivational factors....

Next, if any person acts like they have lost so badly that they fail to be motivated, I’d have trouble identifying, too. If you fear quadriplegia as if it were a slow death of depravity, perhaps you have not experienced an acquaintance with a fairly “normal” quad (who, by the way, might end up in a hospital with pneumonia BUT with pictures and a story of his/her family), which is understandable in your field.

Geena's perspective is likely the dominant one, and I think it's pretty clear from her description of what she sees quadriplegic bodies are communicating to her (as opposed to the individuals with quadriplegia) that she's projecting her fears of paralysis onto her patients. Though it's surely hard in the setting where she meets quads (in a CCU they are probably often newly injured, trached, and cannot speak), the solution to her problem seems so obvious. Get to know actual people.

Photo source

On ridiculous strangers

Much has been said on various feminist blogs about Nubian's experience with a white woman's curiosity. This encounter, from awake : to : dream, is strikingly similar, I think.

Today my friend Jessica and I were wheeling along the residence walkway towards the main campus when we encountered a middle-aged “mom-type” lady who I often encounter on my way to school. She lives in one of the residence buildings, and I know from experience she is a little inappropriately effusive with me given that I don’t actually know her. [Given the cloud of oblivion, I have usually given her the benefit of the doubt and had not yet marked her for idiocy.]

Jess and I continue on, not truly noticing her until the point when her face completely lights up and she looks straight at us, pulling a camera out of her pocket.

Her: “Oh, wow! Can I just take a picture of you both? It’s so rare to see two people in wheelchairs together and you two look so good together!” She smiles broadly, beaming, clearly enamoured with her own brilliance.

Us: “…”

Like Nubian, I have most often not been able to express my true feelings when surprised with an encounter like these, but awake:dreamer manages remarkably well:

Me: (in my serious-but-deadly voice) “I don’t think that’s appropriate.”

Her: dimming now like a Kosovar power plant: “Oh, of course… yes, I’m sorry…”

Us: (expressions of shock and disbelief)

Her: (apologetically) “I was in a wheelchair for two weeks once when I was at Langara because I [insert irrelevant injury here], and it’s just that I would have loved to have had some company.”

Us: “…”

Her: (mumbling irrelevantly)

Us: (dripping with sarcasm) “Okay. Bye now.” (Wheeling away determinedly)

I wish I had the poise in the moment to tell someone they were being inappropriate. It's a pretty gentle way of telling them off without having to invest too much time in impromptu education.

Saturday slumgullion #4

Lots o' links here:

• Sam at Disability Law reports on an Eleventh Circuit ADA case where standing was denied on a suit about access to a greyhound race track because the plaintiff could not be specific about when he might return to the track. The desire to go (and find it accessible) the next time he wants to wasn't good enough. As if life wasn't unspontaneous enough for many disabled folks, now we have to schedule when we might like to use our civil rights.

• Professor Leonard at Leonard Link reports on a federal court decision in Wisconsin that denies ADA standing because of a bizarre distinction between being HIV+ and having AIDS.

• Shh...Mum is Thinking weighs in on prenatal testing for autism and why she's totally against it. She relates a poignant personal experience well worth the time to read.

• Ragged Edge reports that the move to end electric shock behavioral conditioning for children at Massachusett's Judge Rotenberg Educational Center has died in committee.

• Amy at Diabetes Mine relates what happened on a recent flight when she found herself "diabetically unprepared and forced to 'rely on the kindness of strangers' -- which was not forthcoming."

• Stuart Hughes of Beyond Northern Iraq writes for the BBC about "outsider art" at the Creative Growth center in Oakland, California.

• The Patient Consumer held it's first carnival (or parade, actually) last week. I contributed to that, but there's a new parade -- edition 2 -- coming up for anyone who wants to participate.

• John Kelly at NAG continues to chronicle the fight for freedom from brick sidewalks in Boston by meeting with the local WCBV Channel 5 to show the bumpity-bump pleasure of all that brick from a wheeler's point of view. Good photos.

• Scott at Rolling Rains has been covering the accessibility of his personal travels recently, including the surprise of an inaccesible bed at an otherwise lovely hotel. Look also for the photos of his encounter with some bears near Mt. Baker, Washington.

• Finally, the latest Carnival of Feminists can be found at Ink & Incapability. The next one will be at Figure: Demystifying the Feminist Mystique where the theme will be feminism and career. I think this begs for a disability take on employment from someone -- I don't know the deadline, but the carnival will post July 18.

Concern over new Medicaid proof-of-citizenship law leads White House to talk of exemptions

Rivka at Respectful of Otters is blogging again, which I learned via Feministe.

Last Sunday, she analyzed the new law requiring future and current Medicaid recipients to provide proof of American citizenship to get (or continue getting) benefits. It went into effect July 1 and causes concern because many of the 55 million current recipients will find it difficult or impossible to provide the paperwork state governments now need in order to keep their federal funding. All to avoid the problem of illegal immigrants ciphoning off tax payers money for medical care although, according to The Washington Post, a "federal inspector general's report conclud(ed) that there was little fraud by noncitizens." Rivka says:

This rule affects homeless people who have only a garbage bag full of posessions to their names, and no idea where any of their relatives might be. People institutionalized because of mental illness or mental retardation. Elderly people born before all births were recorded - particularly elderly black Southerners, who were likely to be born at home due to Jim Crow hospital policies, and the rural elderly poor. People who are no longer able to communicate clearly due to disability. They don't have passports. They may not know where they were born, or be able to communicate it to their caregivers.

The trouble of administrating all this falls upon already over-burdened state agencies. Can you say "Republican unfunded mandate," three times fast? Rivka again:

We all know that the Bush Administration and their allies in Congress have never signed on to the maxim, "better that ten guilty men go free than one innocent man be punished" - their Guantanamo policies make it clear that they believe the reverse, many times over. On the domestic side, it's clear that they also believe that it's better for ten deserving people to go unhelped than for one "undeserving" person to receive benefits to which they are not entitled. And yet they, the majority of them, call themselves Christians.

Well, lawsuits have been filed, of course. And yesterday the White House announced it would exempt about 8 million people, mostly developmentally disabled citizens who have never worked and some nursing home residents. It's been noted, however, that homeless people and many foster children will still be among those likely to fall through the cracks and lose health care because they lack documentaion.

I'm always fascinated by the comments when blogs write about policies affecting disabled people and Rivka's post doesn't disappoint, though I don't believe anyone has yet thrown out the always ironic "you'd have to be blind to not see..." as part of their argument. Rivka and others do a fine job covering the interests of those most affected by this policy, but here's a sampling of comments:

Here (in the UK), somebody not getting adequate medical care is headline news, and it provokes embarassing questions for the politicians.

and

I also wonder whether this could be a defensible form of triage. By which I mean: You will always make some sacrifices in treatment. You might deny people lifesaving surgery at age 95, to save money for immunizing 6 year old kids. We do this because the OVERALL benefit is positive, and public health is generally concerned with the overall benefit.

So if this plan is implemented, even if some folks slip through the cracks, if we do a fairly good job of catching most of them, you might attain an overall benefit.

and

As someone who has worked in a public hospital for over a decade, all I can say is "ha!" We're lucky when the private hospitals stabilize properly before sending the patient. Actually, no, we're lucky when they send the patient via ambulance instead of dumping them in a cab and sending them unmonitered and unannounced.

and

We spend quite a bit of money doing expensive procedures on people who have fairly limited life expectancy. As an example, we spend an extraordinary amount of money on trying to keep old, sick, people alive; we also spend an extraordinary amount of money on each ultrapreemie. But I don't want to even discuss good/bad specifics until is is excruciatingly clear that we're talking only on theoretical grounds. And I'm not yet comfortable in that respect: this isn't a theoretical healthcare blog, and I have no desire to be misrepresented as a babykiller.

While I can respect the desire to debate the extremes to see where it will lead you, the theory of sacrificing the old, sick and disabled for the public's greater good (Singer? Anyone? Anyone?) doesn't have to be theoretical. It's been done before. (At that last link, note the second link on righthand sidebar estimating money saved in foodstuffs when those marked as "useless mouths" no longer need to be fed.)

Online Disability 101, part 3

Last fall's New Mobility article on South Park examines why Timmy was voted the greatest disabled TV character over at Ouch!

Why would disabled voters choose an animated, learning-disabled, wheelchair-using fourth grader as "The Greatest Disabled TV Character," a misfit kid whose vocabulary is almost exclusively limited to garbled repetitions of his own name and who scored instant popularity as lead vocalist for a heavy-metal garage band called the Lords of the Underworld?

Read the article. And behold my South Park portrait, using this website. It's fun, but there's no wheelchair option, so I'm animatedly gimpless.

Children's picture used as worst-case scenario

Suppose you posed with your son and two other happy children at poolside for what you thought was supposed to be a local magazine's "Summer" issue. Then this portrait appeared on the cover of a "Maternity" issue with the following headline near the children's smiling faces: "Understanding the Results is Key for Prenatal Screening Tests."

The accompanying cover story details the battery of tests one woman goes through because an early blood test indicated she might be carrying a fetus with Down Syndrome. Nowhere in the story or in the entire issue is there any discussion about raising children with Down Syndrome. The children are apparently on the cover only to underscore the drama of testing for birth defects. Of course, this is devastating and appalling to the parents. Jan (adult in photo, with her son, Nash, up front) includes the address of the magazine, Indy's Child, in her description of these events, in case you want to help her express the inappropriateness of a magazine about children using a picture of children as a worse-case scenario.

Thanks to Penny Richards at Disability Studies, Temple U. for posting about this.

Disabled homeless man set afire after being turned away from shelter

Douglas Dawson, a homeless man, was set afire while sleeping in his wheelchair in downtown Spokane, Washington, and died from his burn injuries last week. Many believed he was a disabled veteran who lost his leg in combat. While that's apparently not true, there is a detail of this tragedy that no one is talking about. Here are two articles remembering the man. But here is a press release from the campaign of the Congressional candidate whose headquarters he was sleeping near. (I've bolded the pertinent information halfway down.):

Homeless Veteran Attacked Outside Campaign Office
Had Been Fed by Campaign Staff
For Immediate >Release:
Contact: Jeremiah Levine (323) 842-1099
June 23, 2006, Spokane, WA
Jeremiah@Votepetergoldmark.com

One legged, homeless veteran Douglas Dawson was lighted aflame by two delinquents this afternoon. Dawson had been sleeping near the campaign headquarters of Peter Goldmark, candidate for Congress from the Fifth District, which includes Spokane. Dawson was sleeping outside the headquarters because the previous evening he was given food, water, and blankets by Goldmark Campaign Manager Jeremiah Levine.

"My staff did the right thing," said Goldmark, "Jeremiah acted selflessly."

After finding Dawson across the street from campaign headquarters, Levine pushed Dawson's wheelchair to the headquarters building, fed him, and gave him blankets. Levine called six shelters in Spokane, and none would help Dawson: five were closed, and the Union Gospel Mission refused. The Mission argued that a disabled person would not be able to perform the chores required of all who sleep at the Mission. The Spokane Veterans Hospital was also not available to treat Dawson.

"This points out that there is not enough care for veterans. We must take better care of our veterans, and better care of our homeless community," said Goldmark.

Levine first met Dawson at 9:45 PM Thursday night. Goldmark had just driven Levine to campaign headquarters when Levine noticed Dawson looking distressed in his wheelchair. When Levine asked Mr. Dawson if he was okay, Dawson explained that he was a homeless veteran who had just been discharged from Deaconess Hospital. Dawson complained that he was out of money, was hungry, and had no place to sleep. Levine provided a meal of baked beans and barbecued beef, as well as blankets from the campaign office.

Once fed, Dawson again complained that he had nowhere to sleep. Levine telephoned the six homeless shelters and was unable to find Dawson a bed. At that point, formerly homeless Goldmark volunteer Dave Bilsland helped Dawson from the sidewalk to grassy area on the north side of the campaign office. Dawson slept there until this afternoon. Goldmark staff continued feeding him. At approximately
12:30 this afternoon, volunteer Ed Meadows charged into the campaign office shouting that a man lying next to the building had been terribly burned, and that the lawn was aflame. One staffer called 911 while volunteers Bilsland and Meadows used a garden hose to put out the fire.

According to MSNBC, police have apprehended two young men who confessed to having set Dawson on fire. In honor of Douglas Dawson, Dr. Goldmark will host a free dinner for homeless people at Goldmark Campaign headquarters this Tuesday evening at 6 PM. The office is at 151 South Washington.

This happens at domestic violence shelters too. Frequently, they're not accessible, but even when they are, staff can be reluctant to admit disabled women because of the house rules that everyone do certain chores. (Nevermind that it's an assumption that a person with impairments can't find some way to contribute.)

My point: If you are disabled, social services designed to aid the homeless or domestic violence victims may very likely turn you away because you are disabled. Other than the above press release, no other news source I can find has mentioned this aspect of the story. Not local news stations, not The Associated Press, not Daily Kos. Why? Because even when the disabled themselves are talked about, disability is invisible.

Thanks to my friend at Gray Goose Watch for giving me the heads up to Dawson's story.

Things that crack me up, #5

This is not remotely disability related. It's just a heap o' fun, discovered via Jill at Feministe. A face recognition program tells you what celebrities you look like.

I'm hoping it's just the glasses that threw the program off:

Me. And Chester Bennington, lead singer of Linkin Park.

Runner-up matches: Jeff Goldblum. Chava Alberstein, Israeli singer and peace activist. Annette Benning. Rose McGowan. Umm, Wayne Knight, Neuman from Seinfeld. Nana Mouskouri. And Jacqueline Kennedy Onassis.

When I lose the glasses, it says I look like Meg Ryan and Larry Flint.

Things that crack me up, #4

Like the auto industry, there seems to be a recent trend in mobility aids that are big, scary-looking, and will be able to four-wheel it almost anywhere. This is the aptly named tank chair.

While it may not look as though it fits my delicate sensitivities, here are ten reasons I need this chair:

1) My cat is not yet afraid enough of all my mysterious equipment.

2) I want to really be noticed the next time I am a bride's maid.

3) Sometimes little children who stare are annoying.

4) I'd like to change the focus of stranger questions from "How fast can that thing go?" to "What's the biggest thing you've ever run over?"

5) Nothing says feminist like driving your own personal tank.

6) With enough horsepower, the width of bathroom doors is irrelevant.

7) I need something to go with my new Doc Martens.

8) Being a bitter disabled person, I find I need a more efficient way to run over people's toes.

9) I want to finally fulfill my lifelong fantasy of being a Transformer.

10) I do not yet stand out in a crowd enough for my narcissistic liking.

Freedom Tower design not so freeing

From MSNBC: "The reworked 1,776-foot centerpiece of the World Trade Center site will be surrounded by groups of steps leading to the entrance, serving as a public plaza and security buffer zone."

Number one stupid architectural idea: Requiring people with mobility impairments to ride an elevator to arrive at the entrance of a building.

My university rebuilt the main library during the years I attended and the new design featured a lowered courtyard leading to the entrance, with the inside foyer's skylight part of a small monument in the main grassy quad, above. The elevator to get to the lowered courtyard was set to the side of the broad, well-lighted stairs and you emerged in a spooky little alcove that always made me wish I had a security escort.

Once in a while someone would pee in the elevator -- a problem which wheelchair users of urban public transportation know is common. Once in a while the sole elevator broke down. If you weren't inside the elevator when it broke down, you could either go home and forget that research paper, or find a library administrator with the rare key for the old ground level doors (which required riding a different elevator inside, to reach). All books in the library required at least this one elevator ride, though about 90 percent of the stacks required an additional elevator inside. And unless you happened to be sitting by the old ground floor exits when a power outage or fire alarm occurred, you had to find a team of volunteers to carry you out -- possibly up and out.

Of course, there are serious security concerns building this new symbol of freedom on the old site of the twin towers. But the architectural experts designing an observation deck on the 102 floor can surely think up an attractive, safe and accessible entrance to the site too.

Things that crack me up, #3

Woman ticketed after disabled bay painted around her parked car.

Via Diary of a Goldfish

Disability and porn

Wheelchair Dancer writes about disability and porn because of a new Spanish porn film called Breaking Barriers that is making some news. Most of WCD's post goes on to discuss "pretenders" and "devotees" (a subject about which, specifically, I have no well-formed opinion), but she does say this about disability and porn:

I'm conflicted.

On the one hand, I think it is important for PWD to be recognised as fully sexual beings. Ellen Stohl accomplished some of this work when she appeared in Playboy in 1987. And wasn't there a fuss! From the disability community -- everything from exploitation to not enough wheelchair -- and from those who oppose porn on principle. On the other hand, while I usually maintain a fairly sex positive attitude and I can understand, even sympathize with the arguments that interpret sex work as a positive choice for some women, I know that sex work is not always positive, that the viewer cannot tell from looking at the image, and that in every day life not every sex worker's rights are protected. This limits my ability to go for porn without many, many reservations.

Except for the understatement of that last sentence, I agree completely with WCD -- I'm conflicted. As for Encarna Conde, the 45-year-old disabled woman who stars in the Spanish film, she appears to have had a positive experience:

"It was very pleasant, though I was somewhat cowardly," says Encarna. Unusually for a porn film, however, Breaking Barriers ends with a serious conversation between Encarna and her producer. "Disabled women have to take steps forward and one should always be happy if one breaks a barrier," she says.

As an undergraduate, I took an elective course called "Human Sexuality" taught by an old guy who had about fifty years experience as a couples' counselor. This was the late 1980s and much of the course was on AIDS and safe sex, but the main focus of all topics was good communication between sexual partners. We listened to a panel which included transsexuals that was very informative. And we saw a film of a man and woman having sex in order to provide, the professor said, a visual so that everyone was absolutely clear on what penis-in-vagina sexual intercourse actually involves. I've since learned from a couple social worker friends that there are, in fact, married people out there who think they have been having PIV sex but have been doing it wrong.

In that same educational vein, especially since strangers and acquaintances have sometimes bothered with questions about disability and sex (and pregnancy and orgasms, etc.), I'm conflicted. Does mainstreaming disabled people into pornography help disabled people? Does it help disabled women be seen as less asexual? Does it educate nondisabled people at all or does it just create a bigger fetish market?

I remember being conflicted about Ellen Stohl 20 years ago too. Of course, porn is an extreme example but I'm skeptical when disabled women stoop to objectifying themselves anywhere in order to participate fully in society as females, which I think is what happens in the Ms. Wheelchair pageants. It can happen in photography too, whether in Playboy or some other forum, if the expression of feminine beauty follows cultural expectations of what is beautiful. The Raw Beauty Project, as a whole exhibit, manages to express individuality without catering too much to mainstream beauty expectations, though I think they downplayed disability to walk that line. I'd love to see the whole exhibit.

Guessing which prescribed medications you can live without

This could be part of Disability 101 also, because it's a classic example of the political issues of being disabled in America. The links cover the TennCare health cuts of last year and how they're affecting people now, but the crisis exists similarly everywhere.

NPR coverage. TennCare now allows only five prescriptions per month, and only two of them can be brand-name medications.

Jeremey Sherrod is one of the pharmacists. He says the last few months have been particularly difficult, especially for the TennCare patients who've had to cut back on their prescriptions.

"You know it's hard to tell them whether to treat their diabetes or their congestive heart failure. Which one are they going to die of the quickest if they don't take their medication? It's like we're making the decision of life and death in a sense, and we're not meant to do that," he says.

(Thanks to Mark Siegel on The 19th Floor for the link.)

TennCare documentary. Nashville journalist and filmmaker Sharon Cobbs' video shows how Governor Bredesen and his administration made the TennCare cuts knowing how much they would hurt, but planned to use the surplus created with these unnecessary cuts to manufacture the illusion of helping people by increasing TennCare enrollment just before the next election. It's a 40-minute video. Watch the first 8 minutes, if you can't watch or listen to the whole thing.

Finally, the Faces of TennCare. Joon Powell documents with photography dozens of people forced to choose which medications they can live without or, dropped from the program completely, simply forced to do without.

Things that crack me up, #2

From the look of the sign, my guess is this is somewhere in Scandinavia, maybe. Where they have a huge alligator problem, of course.

I don't recall where I found this photo, so if someone knows, I'll happily give credit.

Things that crack me up, #1

I like the second one.

Online Disability 101, part 2

A chapter from Lennard Davis' book-- Bending Over Backwards: Disability, Narcissism, and the Law. Freud, Shakespeare, Ally McBeal, the ADA and the courts. How can you resist?

Online Disability 101, part 1

It's summertime and I plan on spending less time blogging for a while. So, this is the first of a series of links to great articles online -- thoughtful pieces about disability, disability culture, disability theory, and disabled folks.

We Are Not A Metaphor: This is a roundtable discussion about the representation of disabled people in American theater, but it applies pretty well to movies too.

Saturday slumgullion #3

Linkfest again:

Canada's MADD (Mothers Against Drunk Driving) has created a 30-second public information spot illustrating how drinking and driving will not only leave you in a wheelchair, it will deprive you of your best friend and your girlfriend as they abandon you for a romantic relationship together. You'll be left to watch from the window of an institution-white room as they lead lives of romance and happiness that you can never have. Commentary at Ouch! worth reading, as well as a more detailed written description of the video, if you need it.

Remember the joy of cartwheels? Rettdevil brings it all back, along with some extra joy of accomplishment as well.

Check out the artwork of Susan Dupor, a Deaf woman who says her work often expresses her "primary visual language."

The 2006 winners at Film Your Issue include a video called "Thumbs Down to Pity" by 19-year-old Benjamin Short. His is the third video clip of the five winners, with the semi-finalists available to view below that.

Million Dollar Bigot, a 19-minute documentary response to Million Dollar Baby. I'd heard about this project quite some time ago, but only saw it recently. If you take the time to watch, see it through to the end for a fun story by John Hockenberry.

Experts call sexual attack "pleasurable" for disabled woman

I don't believe this story really needs any analysis to highlight what is wrong. Some excerpts from the Washington Post:

The parents of a severely disabled woman suing a Colorado Springs school district over a sexual assault at a high school said the district has refused to mediate a civil lawsuit as one of its experts called the attack "pleasurable" for the woman.

Kalie McArthur, now 20 and with an IQ of about 50, was assaulted in September 2004 at Rampart High School by a 15-year-old boy assigned as a peer trainer, said Jeff Weeks, an attorney for the girl and her parents.

The boy, who had been suspended 20 times in the previous year and had a 0.0 grade point average, wasn't screened or trained and spent an unknown amount of time with McArthur, her parents, Cindy Starr and James McArthur said.

and

"A professional hired by the district said the assault was pleasurable, not traumatic," said Starr. "He said it ignited her female desires."

Part D hilarity

I've started thinking of any mail I receive from the government as a form of comedy. Farce, mostly. I don't take phone calls yet, since I haven't mastered speaking with the trach, so luckily I've had help with the live comedy routine.

Medicare People (whoever they are) called in April and early May insisting I join Medicare Part D, the prescription drug coverage plan. Their calls were really pushy solicitation urging me to commit before the May 15 deadline. My father, who took those calls, informed them that my private insurance has better coverage and I wasn't interested. Basically, they didn't accept no and after repeated calls they said I was automatically signed up, which it seems is the policy for those individuals meeting certain criteria of which I'm not quite clear.

Upon hearing I was automatically enrolled, my father again told the Medicare Person (rarely the same Person twice, of course) I didn't want Part D and especially didn't want enrollment in the program to jeopardize my private coverage. This is when they suddenly claimed I had signed some document last October for joining Part D. Now, honestly, I've had a lot going on since then so I don't remember signing or not signing anything particular, but knowing myself and the fact that I wasn't using any prescription drugs in October it's unlikely I decided to sign (and mail back?) some official document about it.

It's kind of creepy that this document was mentioned so late in their hard sell project though, right? Right as the May 15 deadline was to come.

That call ended with my father again insisting I didn't want Part D and that we would appreciate seeing this document I can't remember. It was on May 15 that I received the notice from Medicare that I wasn't enrolled (or had chosen to disenroll), so that last Medicare Person had apparently given up on coercion and let me opt out as I wished. Meanwhile, the news was filled with seniors who couldn't get the assistance they needed from these People in choosing a plan. Some were busy with me.

On May 18, I received two letters from a private group about my Part D plan with them. The first was to congratulate and welcome me to the plan. The second was to acknowledge I was no longer on their plan because I decided to leave.

On May 25, I got my laminated membership card for the private group plan I was officially disenrolled from.

So, I really have no idea. I haven't called to pursue because it didn't seem urgent to me. Whichever status is mine, it turns out no one can really tell what will save me money and what will cost more. The prescriptions I currently need are not all covered by the plan, of course. Besides, calculating several (OK, many) hundred dollars in prescriptions is small potatoes compared to the circling bills for four months in three different hospitals under rather intensive care, separated by an ambulance and a helicopter ride. (Just for fun, guess how much that latter trip cost.)

It's unlikely this will remain pure comedy, I suppose. And I'll pursue it responsibly in time. We'll see if I'm still laughing then.

Update on 6/17/06: I received a huge packet in the mail today from the company Medicare chose for me, but it's dated May 5.

Katie McCarron and her Grandpa

For details of three-year-old Katherine McCarron's murder, go here, but for the real story of who Katie was, read the words of her paternal grandfather below:
From Mike McCarron:
I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”.
She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

Children's art with disability

Disability World has art from second graders in Capetown, South Africa.

The second graders had been asked to concentrate their wits and paintbrushes on depiction of disability, encouraged to be creative and draw upon their experiences, observations and imagination. The ceremony was addressed by a deaf member of South Africa's parliament, broadcast live on a community radio station and attracted a great deal of media coverage an discusion about attitudes towards people who have disabilities.

Various little announcements

Just some housekeeping and fine linkages here:

• Apparently some comments left here recently have not come through and I've gotten no email notice that they were even made. If you tried, please feel free to try and comment again, and let me know at kay.fine at gmail.com if it fails again. Thanks.
  
• Recently I guest blogged for Echidne of the Snakes, cross-posting my entries on The Da Vinci Code and Voting while Disabled. No comments here at my site, but check out those links to her site where there was some discussion about what I wrote.
• I've been cleaning up my blogroll and adding quite a few new links. I'll continue to do so when I find the time, so if that interests you, keep an eye out for new linkies.
• Finally, The XVI Carnival of Feminists is up at Welcome to the Nut House and the theme is feminism and disability. She kindly included one of my posts, but there are some other great ones you should check out. The next carnival is June 17th at Bitch | Lab.
  

Just the one sash and tiara

Feminists hate beauty pageants. Well, sometimes we (okay, me) watch them with fascination and disgust, but we'd happily trade them for a competition involving actual female rolemodels rather than just models. Yet in the latest issue of Bitch magazine Anna Clark writes (in "Miss Interpreted: Beauty pageants meet their new ideal") that the pageant form adopted in recent years by various groups to highlight social issues just may be a "savvy political strategy."

Clark's key example of the new political potential for crowned queens and their communities is the Ms. Wheelchair America contest, which is open to women who use wheelchairs, aged 21 to 60, and trades in the talent and wardrobe competitions for the ability to speak and lobby for disability-related issues. The reigning queen, Kristen Connors, acknowledges it's not really a "beauty pageant" but that the format itself is part of the point since disabled women are not considered typical beauty pageant material.

The salient question, posited by Clark:

While Ms. Wheelchair America is no doubt a noble untertaking for a notoriously underserved population, is building on the superficiality of mainstream pageants a justification for using the format at all?

(I don't like "noble" in there, but maybe that's just me.) Clark goes on to note that Miss America doesn't represent the average nondisabled woman either and that crowning the most "relatable" and likely traditionally beautiful person of a community is perhaps "the cost of saddling a single individual with all the ideals and virtues of a community, rather than allowing enough room in the spotlight for multiple individuals."

Aside from the fact that I didn't know that Ms. Wheelchair America uses up the one spotlight alloted to disabled people, crowning a queen gimp is hardly why the contest has come to mainstream media attention. Last spring Ms. Wheelchair Wisconsin, Janeal Lee, was replaced by a runner-up after much ado about her not using her wheelchair often enough to qualify for the title. The fascinating real story the mainstream media never mentioned is that the dethroned woman had confronted the state pageant coordinator (who was also the previous year's winner) for her role as a plaintiff in a number of ADA access suits. While cast as the victim of silly pageant rules, Lee's real conflict with the pageant officials was that she prefers a more genteel approach to access than forcing the courts to address the law.

Let me recap: A finalist for the disability spotlight for 2005 made mainstream media news as an unfairly treated (non-litigious) woman, and disabled people are squabbling over who is disabled enough. The subtext: If they can't agree on who qualifies as disabled then why should we be expected to understand and accommodate them?

Just how is this noble trek into mainstream media attention politically useful to disabled people? The "relatable" spokeswoman the media wrote about is the one rejected by the pageant, the one who doesn't want to start any lawsuits, the one who is cast as bewildered and hurt by the rules of the pageant -- and the pageant is cast as a symbol of the disability community. The radically active disability rolemodels end up Othered again in favor of a disability spokesperson that suits the media and culture as it is. (If Lee counts as disabled, that is. If she doesn't, well, problem solved anyway.)

But suppose it is possible to remake the beauty pageant format into an actual political tool that serves disabled people. Is it good enough that the "relatable" queen will likely be physically impaired and never low enough on the subculture's hierarchy to be someone with a mental or developmental impairment? Isn't the whole exercise of choosing an ideal representative the problem with beauty pageants? If feminism's critique of beauty pageants teaches us anything, it's that using our own objectification or idealization as a political tool is a Faustian bargain. We still remain on the outside fighting to get access in.

Disability and LGBT Families

As an ally of LGBT people, I wanted to participate in this blogathon sponsored by Mombian. And as a single-issue blogger, I wanted to incorporate disability issues into my contribution. But here's the thing: You can't be both. LGBT and disabled, that is. If there's much information out there, academic, anecdotal or otherwise about parents who are both LGBT and disabled I have missed it completely.

It's not surprising, really. Google gay parents and you get mostly debates about whether or not LGBT people are fit to parent. Google disabled parents and you may find some support groups for disabled parents, but you'll also find that mostly "disabled" refers to the children being parented. This is especially true for disabled foster children who do not top the list of wanted adoptees, but then usually the gay foster parents are allowed to foster but not adopt.

Interesting, that, eh? The unwanted and the unmarriageable. They are good for each other unless they want to make it official.

As for disabled parents, some have their parental rights challenged because of their impairments. And historically, disabled people have been involuntarily sterilized.

There's been a discussion recently on an online feminist bulletin board I frequent about how women in our culture are expected to have children. I'm unable to relate to this, since I don't have children, don't want any, and our culture doesn't want me to have any either. Once when I was about 20, an absurd misunderstanding between a professor and I led him to believe I had a child. The appalled look on his face was replaced by relief the moment I set him straight. Meanwhile, my nondisabled female peers who go to the gynecologist and inquire about getting their tubes tied because they don't want children either are sometimes referred to psychiatrists because this is abnormal behavior.

I don't have any anecdotes at hand about how exponentially more complicated it is for disabled LGBT parents to be taken seriously. Or, for that matter, nondisabled LGBT parents of disabled children. If you're out there, leave a comment, will ya?

Thanks to Frog for alerting me to this event.