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.