Disability Issues – Page 11

Weight

This is about a weightlifter and parent, not necessarily in that order.

The New York Times ran this in sports.

I loved her story, but I didn’t love the story, not the way they covered it. The whole thing starts with a very traditional-role narrative. First, the reporter sets it up:

Melanie Roach is a former gymnast who owns a gymnastics facility. Her husband is a state legislator. At 33, she is the mother of three young children, including 5-year-old Drew, who is autistic. And she can lift 238 pounds over her head.

Then, he (Greg Bishop) spends the first half of the piece talking about her role as the mother of an autistic child:

The problems she encountered in competition were nothing compared with the challenge she confronted with Drew after his autism was diagnosed in 2005. Roach said she was preoccupied with everything he would never be able to do — school dances, church missions, college classes. He did not have bad days; he had bad weeks, bad months, filled with relentless tantrums.

“It was literally in a week my life changed,” Roach said. “I went into depression. I went through a mourning process. Almost like I lost a child.”

She said she would kneel at his bedside every night, praying he would get better.

Not that I didn’t like that part of the story. In fact, it resonated with me quite a bit. I have young children with health problems — though not autism. So I felt a profound empathy with this fellow parent whose parenting challenges can be overwhelming, and I liked that part. But I saw it as positioned in the story in a way that it would not have been with a man.

The piece goes on:

“She learned that no matter how much money and time she put into it, she couldn’t change the outcome,” said her husband, Dan. “That has really helped with lifting. In the end, it’s the same concept.”

Without her experiences as a parent, the rest is a conventional sports narrative. She converted from gymnastics to weightlifting (so did US Olympic weightlifter Tara Nott, BTW; I think that’s a more common conversion than might immediately be apparent as both are dependent on explosive power, flexibility and balance and reward short people). She was an overnight sensation and set a record in 1998, but then injuries took their toll; she had several comeback attempts and a lot of pain and finally back surgery; now she’s the aging vet looking for one last shot at gold. She’s paid her dues and trained through a lot of pain to get here. That’s a conventional narrative, but it’s a good story. I’m totally with her on that. Go Melanie!

But the reporter’s interpretation of the interplay between Melanie Roach, Champion Weightlifter and Melanie Roach, Mother bothered me:

Thrush can tell immediately how well Roach is balancing the complexities of her life. He said he knew Roach was struggling with the pressure at the national championships in March, when she successfully lifted only two of six attempts. To qualify for Beijing, she must finish fourth or better in the 53-kilogram weight class at the Olympic trials in Atlanta on May 17.

“You’ll have an opportunity to be an average, everyday woman after August,” Thrush said he tells Roach when she seems distracted. “You need to be selfish now.”

Team Roach marches on through a life that Dan Roach described as “organized chaos.” Bonnie Kosoff, Melanie’s mother, moved in recently to take care of the children. Summers and Thrush travel to events.

“You know how they say it takes a village to raise a child?” Kosoff said. “Well, it takes a village to get someone to the Olympics, too.”
The changed outlook remains. Had Roach gone to the Olympics in 2000, she said, she would not have three kids or the business. Had there been no Drew, she may never have learned what Thrush tried to teach her all along — the concept of slow and small but steady and incremental progress.

But the biggest change that Drew inspired was in Roach, the athlete. She now enjoys the Olympic quest, 14 years after it started.

(Emphasis supplied.)

I don’t know Melanie Roach and I can’t speak for her. It’s possible that this reporting is completely true to her own interpretation of her experiences. Or it could be the reporter’s positioning. But I think that the reporter is highlighting things that would be true but taken for granted for male athletes.

If a man of 31, an international class athlete, were headed to the Olympic trials after a career of triumph, injuries and comebacks, with three kids and a spouse, it would also be true that it took a village to get him there. But I don’t think it would get much attention. I think everyone would just call it normal. But when a woman has kids, how she negotiates the demands of the rest of her life is The Big Question, the one that prompts several paragraphs in a major newspaper. It’s not just the way the role of mother is presumed to take over a woman’s life; it’s especially that this presumption goes unexamined.

And it wasn’t just the reporter. Her coach’s juxtaposition of “average everyday woman” (clearly a pejorative there) with high-level competition and positioning her ambition as “selfish” is exactly the problem. When men compete, they represent. The village isn’t just supporting them, they are bringing the triumph home for their family and friends, communities, nations, etc. But this guy is telling his lifter that she’s doing it all for herself. Way to motivate, coach!

I don’t have a good line to summarize this. I liked the athlete and I was bothered by the way it was framed.

p.s. there is a lot in the article that I didn’t raise. She’s Mormon, she had three home births, a few other things. It’s an interesting read for several reasons.

Update: In comments, Donna pointed out something that I did not, the ablism. This woman’s autistic son is treated as a burden rather than a person.

I Blame the Kyriarchy

Happy May Day. As people around the world celebrate the struggles of laborers, and as many immigrants and supporters of immigrant rights set off on protest marches around this country, I wanted to link you to one of my favorite blog posts of the last week: Sudy’s explanation of kyriarchy, a concept coined by Elisabeth Schussler Fiorenza.

It’s a useful neologism for an idea that comes up a lot: multiple, overlapping, shifting pyramids of power. Try to focus too hard on just one, try to figure out with some kind of precision exactly which individuals are at the top, and you lose sight of the entire awful kyriarchy, that has any number of ways to crush people. It’s another trick that power structures play to distract you. I’ve heard this kind of concept discussed before — some people I know just use the word “hierarchies” to talk about this, and in some feminist writing this is what “patriarchy” means. But I like the word kyriarchy, not least because it doesn’t just focus on “fathers” as the top of the pyramid.

For me the word summons up a bizzare image of holographic, floating, disappearing and reappearing ancient step pyramids. Because that’s how complex the overlapping of power can be, and how surreal. Sometimes we talk about this stuff like patriarchy, white supremacy, or homophobia is a bunch of craggy old white guys having a meeting down the street where we can kick the doors in and turn over the table piled high with money and blood. Too bad that the history of oppressive cultural attitudes, social enforcement, the accumulation of religion and greed and control and security is never that simple. But don’t think I mean it’s all ideology either. Kyriarchy kills. Don’t let it slip behind you when you’re not looking — or under your feet.

Carnivals: Submit Now, Read Soon

Ms. Crip Chick (excellent blogger, btw) is hosting the 37th Disability Blog Carnival. Submissions are due on May 4th:

Here are some topic ideas!:
• What is disability identity? If you are disabled, do you feel disability is a part of you and your experience?
• What is disability culture to you? How do you put it out there or live it every day?
• Does disability intersect with your other identities (i.e. queer person, person of color, person of faith, etc.)?
• Is pride, community, or the Disability Rights Movement important to you? Why or why not?
• How do you feel about the word disabled? Is it a political term with power to you or do you despise it?
• Do you see disability outside of a rights framework (i.e. is disability something that is more than advocacy to you?)
• If you identify with the autistic acceptance movement, the deaf community, or other groups, how do you feel about disability? Many people do not want to associate with the disability community— how do you feel about this?
• Have you felt alienated from the disability community because of racism, exclusion because of your disability, the media or other factors? How has this affected your identity as a disabled person?

And some topic ideas for allies:
• Why is disability important to your work or politics?
• How do you feel about the Disability Rights Movement and what would you say to activists who downplay this movement or even disability as an important social justice issue?
• How do you see disability intersecting with feminism, reproductive justice, and other forms of oppression?
• What do you see in your role as an ally?

I think I’ve made it clear that I was disappointed with this thread on reproductive justice for disabled women. But I was also very impressed by the many who showed up to debate and defend against the ignorance and ugliness. I thought that some of you might be interested in contributing — and that for everyone who participated in the thread, this will be good and necessary reading when its done.

Speaking of carnivals that are particularly relevant as of late, Angry Black Woman is still accepting submissions to The Carnival of Allies. Submissions to this carnival are also due on May 4th, and I hope to see a lot of bloggers both big and small participating.

I call a Carnival. The Carnival of Allies. Where self-identified allies write to other people like themselves about why this or that oppression and prejudice is wrong. Why they are allies. Why the usual excuses are not good enough. I figure allies probably know full well all the many and various arguments people throw up to make prejudice and oppression okay. Things that someone on the other side of the fence may not hear. Address those things and more besides.

And when I say allies, I’m talking about any and every type. PoC can be (and should be) allies to other PoC, or to LGBTQ people if they are straight, or any number of other combinations. If you feel like you’re an ally and have something to say about that, you should submit to this carnival.

Like with the Disability Carnival, even if you don’t contribute because you don’t blog, don’t get the time or don’t feel educated/qualified enough to participate, I strongly hope that you will take the time to read the finished product. It’s going to be important stuff.

Illinois Court Rules Against Forced-Sterilization of Disabled Woman

Good news:

Disability rights advocates and medical ethicists praised a precedent-setting ruling Friday by the Illinois Appellate Court denying a bid to sterilize a mentally disabled woman against her will.

The woman, identified only as K.E.J. in court records, isn’t capable of raising a child on her own, but her guardian failed to prove that sterilization would be in her best interests, a three-judge panel in Chicago ruled unanimously.

[ . . . ]

The ruling was the first appellate opinion on the issue in Illinois.

“It’s extraordinarily significant” because it guarantees the disabled a court hearing, said Katie Watson, a Northwestern University professor who wrote a friend-of-the-court brief in the case on behalf of about two dozen medical ethicists.

[ . . . ]

K.E.J., 29, suffered a brain injury as a child when she was struck by a car. As a result, she cannot be left alone to operate a stove or perform most household chores.

The woman lives with her aunt, who was appointed as her guardian in the mid-1990s. In 2003, the aunt filed a “petition for tubal ligation” in Cook County Probate Court, arguing that her niece had a bad medical reaction to other birth-control methods.

At a bench trial in 2005, K.E.J. testified that she hoped one day to have children. “I will love taking care of them,” she said. “I will love, you know, to see how they grow.”

Seeing our atrocious history on forced sterilization in this country, I’d say that this ruling is oh, several decades overdue. I personally found both Pregnancy and Power and Killing the Black Body to be excellent primers on this subject as well as great books (but I’m sure that there are other great books I haven’t read that focus primarily on this issue — if you know them, leave the titles in the comments). But the simple version of the facts is that for many decades, America participated in and promoted forced sterilization of those who were deemed unfit to pass on their genes. That included women of color, the poor and those who were referred to as “feeble-minded” — disabled women (the phrase was also used to justify sterilization of other socially-scorned women, like those who were promiscuous or sex workers). Many people believe that this is still happening, like with the Norplant situation several years back (also covered in Killing the Black body), and there is more or less undeniable evidence that it is still happening to non-English-speaking women and the disabled.

We often treat disabled people as though they are undeserving of certain things in life, and sexuality and parenthood are pretty high up on that list. I do not think that being unable to raise your children on your own makes you unworthy of giving birth to and raising children. And I certainly don’t see any justification for a forced-sterilization of a woman who has made it clear that her wishes are otherwise; we need to see it as equally heinous to forced-birth and forced-abortion. By it’s very nature, a fundamental right is not conditional, and believing in reproductive justice means believing in it for all. And so I applaud the court and congratulate disability activists on this win; I can only hope that the success continues.

via FRIDA

A saner era? Myths about trans kids in schools, courtesy of FOX News

I’ve been following the media reactions to a story from Colorado about a young transgender girl in the 2nd grade and the usual gang of clowns are doing their “moral outrage” acts. It’s all fairly predictable, but it’s still fun and somewhat illuminating to pick apart what’s being said, so let’s take a look, shall we?

For starters, if you have questions about young trans kids (and many people do) an excellent resource is the TransYouth Families Advocates FAQ. This group was started by four mothers with transgender children, and their material is written for families who are trying to deal with and understand their kids’ struggles with gender.

The story in question is pretty straightforward. The school district has been working with TYFA and is doing a pretty great job at accommodating the trans child’s needs; they’re making sure pamphlets and counselors are available for students, parents, or faculty who have questions, and they’re making two of the school’s unisex bathrooms available for the trans child to use. Sounds fairly reasonable, right?

Well of course, Neil Cavuto on FOX News doesn’t think so. (Video courtesy of GLAAD.)

I can’t transcribe the whole thing, but he starts off by calling it a “bizzare story,” then brings on a child psychologist to serve as the punching bag for the usual interruptions and “what, are you crazy?” remarks that always seem to be the bread and butter over at FOX News. Let’s see how many myths and fabrications Cavuto managed to rack up:

1. “Bending over Backwards” Part 1: Schools have to build unisex bathrooms to accommodate kids like this, costing taxpayers thousands… or millions!

Yep, he actually says “millions” at one point. Fact-check: nobody has ever actually built a unisex restroom on behalf of trans people, and I have to say it’s not likely to happen anytime soon, either. The most “extreme” accommodations that I’ve ever heard of in this regard are reclassifying one or two bathrooms among mnay as unisex or all-gender — and that’s usually in settings like colleges, or LGBT community centers. And that’s not even the case here; the NBC affiliate in Colorado that reported this story simply said “two unisex bathrooms in the building will be made available.” Of course it’s easier to whip out the hyperbole and assume that expensive construction is going on, but anyone who did a little fact-checking would realize that trans people in these situations are usually asked to use an existing unisex bathroom. In a school, that’s often a single-occupancy bathroom in the teacher’s lounge or the nurse’s office.

And let’s be clear, this is usually a compromise. Trans employees and students aren’t asking to walk to the other end of the building, or in some cases take an elevator to a different floor than the one they work on, or go across the street or campus to a different building because they want to. Trans people are forced to because institutions can’t figure out another way to segregate us from people who might be uncomfortable sharing a restroom with us. Most trans people identify as one gender or another and tend to use the appropriate bathroom in say, a relatively anonymous public place like a movie theater or a restaurant. It’s only in contexts where coworkers, bosses, or other students know someone’s trans that this kind of problem comes up, along with the “unisex bathroom” compromise.

Approximate cost to taxpayers: possibly the price of one or two extra keys to bathrooms that are normally locked. Approximate cost to trans student: segregation from everyone else’s bathrooms, and less convenience since there are only two she can use. OK, what’s up next?

In the interests of full disclosure

Apparently there was a bit of controversy–well ok, it was just one guy being a jerk–over my joy at getting some psych meds, as chronicled in this post. So, for the interests of full disclosure, I thought I’d let you all know the mind-bending blast I’ve been having, as my body gets used to the first few days of new drugs.

So, I’ve been prescribed prozac for depression and anxiety. It seems to have given me a dry mouth, nausea, and diarrhea, which has sent me running straight for the cannabis to counteract the effects of the prozac. So, the cure for the prozac is, well, pot. Which hey, lucky me.

And xanax, which believe it or not is considered fun by some people, who apparently actually will buy it at the street level. But I think you’d have to take several at a time, cuz this stuff doesn’t do anything exciting except make me woozy for about 10 minutes.

And ambien, because of previously discussed sleep issues.

So yeah, I’m defending to the death my right to take these medications that give me dry mouth, nausea, a full night’s sleep, and slight wooziness. I’m also defending my right to take the warfarin that keeps my blood from clotting, the cartia that is keeps my heart ticking, the amiodarone that keeps my heart ticking, and the toprol, which also keeps my heart ticking. Oh, and the diuretic that makes me pee every 5 minutes and makes my blood pressure drop til I feel like swooning (but keeps my legs and feet from swelling so much I can’t even wear shoes) and the potassium to replace what the diuretic leeches out of my system

And the weed, which makes it all bearable.

It’s not something you grow out of

Shark-Fu* has a post up at Shakesville and at Angry Black Bitch with a very important reminder:

A bitch was pleased to read that Senator Clinton would increase funding into autism research and education, but I’d like to see some of that money go to adult autistics too.

Oh, I know that the press is in love with autism right now because the revised spectrum has resulted in a better understanding of just how common an autism diagnosis is. But the press has failed…horribly…to point out that autism is not a childhood illness just because symptoms appear when a person is a child.

Autistics grow up. Education is great and more funding will certainly help the many families who can not afford programs that will help their child become an adult who can participate in society. But autistics grow up and that 1 in 150 estimated figure should be a warning bell to policy makers that major funding increases in adult care and job training programs are needed now and sure as shit will be needed in a few years.

So go forth and fund research for a cure and research into treatments. I hope all the candidates intend to fund education and expand the availability of those programs to all families. But all y’all need to know that the thousands of autistic adults who woke up autistic today and will, by the grace of God, wake up autistic tomorrow need a commitment to healthcare, job training, work programs and residential care.

I’ll say it one more time…autistics grow up.

It’s true, and it’s something all too many people forget. My nephew has autism, and I know my sister worries about how he’s going to function as an adult — will he live on his own? Will he be able to work? Given how difficult it’s been to get necessary services and accommodations from a school system required by law to provide them, what’s going to happen when he leaves school?

Read the whole thing.

____________
* Is that the best handle or what?

Miss Landmine Angola

(Updated)
The Miss Landmine Angola competition is a pageant that seeks to celebrate female empowerment and expand definitions of beauty. I’m no huge fan of pageants, and I can understand arguments against adopting regressive practices like beauty contests even in an effort to challenge beauty norms. Seeing women in bikinis isn’t exactly revolutionary; but seeing women whose bodies are outside of the thin, white, able-bodied ideal in bikinis can feel pretty ground-breaking. I especially like their Manifesto:

* Female pride and empowerment.
* Disabled pride and empowerment.
* Global and local landmine awareness and information.
* Challenge inferiority and/or guilt complexes that hinder creativity- historical, cultural, social, personal, African, European.
* Question established concepts of physical perfection.
* Challenge old and ingrown concepts of cultural cooperation.
* Celebrate true beauty.
* Replace the passive term ‘Victim’ with the active term ‘Survivor’

Can’t argue with that.

That said, though, there is still an issue with slotting women into the traditional femininity box in order to make her physical appearance more acceptable. I like that these women are unapologetic and proud of their bodies; however, BfP makes a good point:

Supposedly it is to be used as a way to raise awareness–but is it really necessary to call a woman “Miss Landmine” to get the damn point across? And what with Heather Mills dancing in the Dancing with the Stars show–I’m wondering, should we call her Miss Car Accident if she wins the competition?
Perhaps I am too cynical?

Unfortunately, it looks like I was too quick to voice my approval of this project — Black Looks highlights the fact that the contest is being used to promote designer clothes in fashion magazines:

My mind is not in a place where I can think clearly but my gut reaction to this is that it is highly offensive, disgusting exploitation of African women. In the background of some of the photos there are these white people smiling and glowing as they make up and dress the women – like mannequins. Putting the issue of beauty pageants aside and the patronising comments on Western opinions and African cultural traditions etc, it is still an inappropriate tool which objectifies women beside landmine survivors are men as well as women. Even the use of the words Miss Landmine is horrible. And who the hell is going to be buying these glossy magazines and wearing these fancy clothes? Certainly not the women survivors who are poor unemployed women?

I stand corrected.

Thanks to Luther for the link, and Damia in the comments.

Just because you call something satire, doesn’t mean it is.

Kat passed along to me yet another example of a “satirist” taking a stab at “A Modest Proposal” and failing, miserably, because said “satirist” fails to understand satire. This has been rampant at college papers lately; the latest was written by a high-school boy. The twist here is that the school paper, evidently staffed by editors equally as uninformed about satire as the author, published the piece. The principal, after having read the piece, seized 500 undistributed copies and created a newspaper advisory board. As a result of this, the Atlanta Journal-Constitution decided to run the column, meaning that Justin Jones’ poor excuse for satire has now been taken up as a freedom of speech issue.

For a millennium, the world has been plagued with stupid people corrupting society and bastardizing the value of life for all of mankind.

The intellectually handicapped have been reproducing at a substantially greater rate than those with a fully functional brain.

The problem of the unintelligent reproducing is, and has been, a serious threat to society that has gone unchecked for far too long. It is the responsibility of man to solve this problem before a reverse Darwinism takes effect.

It is depressing to think (especially at the high school age) that people with a high IQ are generally stereotyped as “geeks” or “nerds” because they choose to do more intellectually stimulating activities like homework, and reading, instead of those activities preferred by their peers like power lifting, full contact football without head protection, or crushing cans on one’s head. So while the intelligent are exiled from the masses, the ignorant are cherished and embraced.

Due to the substantial amount of low IQ reproduction and relatively low amount of high IQ reproduction, the intelligent become fewer and farther between.

Is this a good enough reason? If not, what is?

Kat passed along this story from CNN that brings up all kinds of disturbing questions about bodily autonomy and disability and medical interventions:

LONDON, England — A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.

Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.

But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a “disturbing precedent.”

Andy Rickell, executive director of disability charity Scope, told the Press Association: “It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie’s best interests.

Painful, invasive surgery on a disabled teenage girl to spare her from the “pain and discomfort of menstruation.” That, to me, sets a terrible precedent. There’s not much in the article that indicates that her periods are unusually heavy or painful, or that she’s got fibroids, or that she’s unable to take any sort of hormonal birth control. In any event, there are nonsurgical alternatives, or even less-invasive surgical interventions, like uterine cauterization.

I’m not really sure, in fact, what’s going on here. The mother swears it’s not about her:

Katie’s mother Alison Thorpe, who lives in Billericay, southern England, said the operation was in her daughter’s best interests.

“First of all, this is not about me. If it was about me, I would have given up caring for Katie a long, long while ago,” she told GMTV.

“It is about quality of life and for Katie to not have the associated problems of menstruation adds to her quality of life. It means she can continue with the quality of life we can give her now.

“Katie wouldn’t understand menstruation at all. She has no comprehension about what will be happening to her body. All she would feel is the discomfort, the stomach cramps and the headaches, the mood swings, the tears, and wonder what is going on.”

Thorpe said an operation would be best for Katie, despite the initial pain it would cause.

She added: “The short-term pain and discomfort we can manage with painkillers. We will be able to manage that pain much better than menstruation once a month, when Katie cannot tell us ‘I’m in pain.'”

So the solution is to put her through severe pain now to spare her cramping later? Can’t you give her painkillers once a month later, or Depo shots, or what have you? Something just seems sort of off to me with this whole thing.

I don’t want to minimize the burden that Allison Thorpe will have in caring for Katie over a lifetime, nor her awareness of Katie’s limited ability to comprehend and communicate that she’s in pain. However, given a range of alternatives, I can’t help but think that there’s a pretty big factor of not wanting to deal with the mess every month here.

The question, of course, is whether this decision will be for Katie’s benefit. And I just can’t say for sure, with such limited information. But I can say for sure that this case raises a lot of red flags for me. There’s also the issue of bodily autonomy, which is a particularly fraught subject in the disability-rights context, one that was argued with a great deal of intensity in the case of Ashley, a Seattle girl referred to as a “pillow angel,” whose growth was stunted surgically (which included the removal of her uterus and breast tissue so that they would not interfere with the hormone therapy or cause her discomfort) so that she could remain a size that would allow her parents to care for her at home and be able to transport her easily so she could be included in family activities. (For some perspectives on the ethics of this choice, see Blue and Planet of the Blind and Lindsay Beyerstein).

Thoughts?