New group blog: Feminists With Disabilities/Forward

Belle Dame says check it out.

11th Feminist Carnival of Sexual Freedom and Autonomy

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37th Disability Blog Carnival is up

at cripchick's: go forth and checketh out.

The Second Feminist Carnival of Sexual Freedom and Autonomy

is up at Labyrinth Walk, and it's wonderful, rich in breadth and depth. Check it out.

gah.

Elizabeth is right, of course. It's not something most of us want to know about, no, that's quite right.

Hey Feminists, Christians, Activists, LGBTQ, the political left, the centre and the right, and any other group you want to throw in this powerhouse of US and Canada they call North America (Mexico must LOVE that) listen carefully: We, the sick, the people with disabilities, those with impairments, the ill are not going away or going to remain invisible for a simple reason. WE are YOU. If you don’t have time to put us on your agenda then you don’t have time to care about yourself, your partner, your children, your parents or your friends. And sadly, it seems you don’t.

...In Cleveland last week, three 12 year old students, two boys and a girl beat a student because.....he had cerebral palsy. The attack was so severe the boy had to have a testicle removed. The boy had been bullied repeated before solely based on his neurological condition.

The school Superintendent Myrna Corley's response: “It's an unfortunate situation.”

Unfortunate.

On Tuesday, though I have no fine motor control of my hand and limited gross motor skill I was trying to make a complaint about discrimination on disability AT a disability vocational center when the manager would only accept the complaint if I did it MYSELF, in WRITING. This was a painful and very slow process, of over 20 minutes for three minutes of writing. Later the manager apologized saying, she had made me do that because, "I had made her angry." The full story is here.

Gosh, I guess I should hope she doesn't get angry often....

from the comments section:

Though I visited people in hospital, and from my church and sent cards I never once thought, "That could be me." Nope, I was the giver, never considering I would be the dependant. Never really considering they were equal to me in inviduality and emotion (as you say), or desires, or ambitions, or FRUSTRATIONS, or fear. If you know 3000 people then you will know several people with MS, at least 1 with Lupus or Crones, several with Fibro or CFS/ME, several with breast cancer, a few with other types of cancer, a couple dozen with arthritis (minimum), and several more with chronic conditions, as well as hundreds to 1,000 who have at least one episode of major depression, are within the ASP (austism spectrum disorder), bipolar, or other mental illnesses. That doesn't even count just getting old. It is what is means to BE human, in many ways.

There is that. Helplessness is part of the human condition, and for those who have a temporary reprieve from it, the prospect of returning to it is fucking terrifying.

Why is it fucking terrifying? Well, partly it's an existential thing. My mother is currently watching -her- mother, my grandmother, slowly deteriorate mentally as well as physically. The term "regression" applies. It's not supposed to work that way, right? Growth is supposed to be linear, a goal is reached, one doesn't go backward. One doesn't become parent to one's parent and child to one's child. Does one?

But that is, as EmC observes, maybe the least of it. Or, well, not all of it.


from the BBC piece:

There is something so tempting, so easy in humiliating someone with a disability, particularly when you know their limitations. Take away their crutches, their wheelchair and watch them crawl. Refuse to make allowances, refuse accessibility, to accommodate because you can. Even when you are paid to help and understand them, in the end they aren’t like you and if they make you angry, just tell them they have to write it themselves, no not type…write it, and watch them painfully toil. I don’t know if it gives satisfaction, or a feeling of superiority to watch someone strain as they make a complaint that Triumph is treating People with Disabilities as sub-humans.

It is easy when you are paid to assist, to withdraw that, and no one will know. No one will know you used the medical information a PWD gave you to hurt them, to try and break their spirit, or their pride, or what you consider willfulness, or what you see as arrogance. You weren’t even “Just following orders” like the person I was complaining about, you did this because you could and you wanted to. Though I struggled it wasn’t me who lost my dignity, nor my humanity, but you.

I wonder how often someone “makes you angry.”

Yeah. Of course we don't want to be dependent, because we know -just how fucking dependable- our tender fellow creatures are, don't we?

We're better than that ourselves, of course, each and every one.

Aren't we, though?

Quote of the day, 11/25/07

Consider the lilies, how they grow: they toil not, neither do they spin; yet I say unto you, Even Solomon in all his glory was not arrayed like one of these.

Luke 12:27

as loosely inspired by this post, which you should read for a whole bunch of reasons.

Never mind the paving stones. Do you know where you're going?

"Of all tyrannies a tyranny sincerely exercised for the good of its victims may be the most oppressive... those who torment us for our own good will torment us without end for they do so with the approval of their own conscience...

To be 'cured' against one's will and cured of states which we may not regard as disease is to be put on a level with those who have not yet reached the age of reason or those who never will; to be classed with infants, imbeciles, and domestic animals. ...

Or those who never will.

Hold that thought.

The new Nero will approach us with the silky manners of a doctor...

Even if the treatment is painful, even if it is life-long, even if it is fatal, that will be only a regrettable accident; the intention was purely therapeutic...

But because they are 'treatment, not punishment,' they can be criticized only by fellow-experts and on technical grounds, never...on grounds of justice...

But we ought long ago to have learned our lesson. We should be too old now to be deceived by those humane pretensions which have served to usher in every cruelty of the revolutionary period in which we live. These are the 'precious balms' which will 'break our heads'."

--C. S. Lewis, "The Humanitarian Theory of Punishment"

(as found here)

Via Feministe (among others): it's the new trend heard round the world!

Mother seeks girl's womb removal

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.

"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.

"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."

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."

Oh, okay. So, she will have -no comprehension- of why she feels the relatively mild pain of the monthlies. (and of course she can't be given the Pill or extra-strength Tylenol or anything like that). That would be bad.

A nonconsensual hysterectomy, though, well, that'll go down a treat, won't it? I mean, it's only major surgery involving total anaesthesia and removal of an organ and stitches and o i don't know, maybe just maybe some PAIN afterward? Oh, short-term, of course. Here's the very first commenter on feministe on that short term pain:

I was diagnosed with cancer at 26 and had a hysterectomy shortly thereafter. I would prefer another 20 years of periods to that. The recovery period was a minimum of 6 weeks. If the teenage girl’s disability impedes her ability to walk, her recovery may likely take even longer. On top of the 6 weeks, I also had to have a suprapubic catheter (i.e., a tube of pee coming out of my abdomen and into a bag on my leg) because of some complications during surgery. As a result of that, I kept getting recurring infections and was eventually re-hospitalized because of infection and dehydration.

And of course, with CP, nothing could -complicate- the recovery period, you know. But most of all, the -important- thing is, well, it's better for her in the long run, isn't it? It's not like she'll be in any terror or confusion or misery after this, and in any case with a major operation like this, well, Mom and everyone can keep her drugged to the gills so she -really- won't have a clue what's going on. Probably. And then, poof! All better! No lasting scars that anyone'll care about, and most of all, -no monthly mess.- Anyway, it's not like she can -say- anything about it, is there?

Yes, the IMPORTANT thing is, Katie won't be bleeding from her hoo hoo and won't thus reach physical womanhood. The "inconvenience" and "indignity" of it all, in her Mom's words. THAT would be VERY UPSETTING. For Katie. Of course. Who else?

See FRIDA for more.

FRIDA feels the core of the problem lies not only in the blatant sexism involved, but in the lack of community supports for families of children with severe disabilities. With only one or two parental caregivers, these families face enormous unrelieved stress without any recourse to professional, well-paid respite care. Cases such as Katie's continue to demonstrate that society must change to include the individual with a disability. Surgical intervention is not the answer.

International advocates for disability rights have long advocated for the right of disabled people to bodily integrity. The UN Convention on the Rights of People with Disabilities, which took two years to shape, specifically states that bodily integrity is a human right.

and

The language in the article is highly bothersome for activists who have worked for many years to make families aware of and able to utilize community supports for people with disabilities. Having bladder and bowel issues, undignified? Well, that's pretty much a human thing....but I guess when you're only one of two people cleaning up someone else, and you aren't being paid for it, yeah, it can suck. It might not be as stressful if there were people providing in-home service to help! Where are the in-home services for Katie Thorpe?

Beyond in-home supports, the cases of Ashley X and Katie Thorpe expose problems in our social expectations of families. We expect families to take care of their own, and we expect that at some point, kids are able to get out of the nest. However this assumes a lot of responsibility for independence on the part of the child. When a child needs a lot of dependent support, especially the 24/7 kind, the mold goes haywire. Families in this kind of situation NEED HELP. They NEED OPTIONS. But options are not really there, particularly in cases where the child is maturing physically into an adult and will not be covered by supports offered through public education. So people feel that solutions like hysterectomies make a lot of sense. Families say, "If you were in our situation, you'd do this too!" In effect, who are the rest of us to judge?

For a historical perspective, let's go back to 1962. I am thinking of Arthur and Daniel Miller. Arthur Miller's wife Inge Morath gave birth to Daniel that year. Turns out Daniel had Down syndrome. So Arthur had the baby sent to an institution, where he lived out his life. As far as we know Arthur never saw his son. Why did he do this? From social attitudes at the time, we can make a good guess that maybe he was ashamed, and that difference was disturbing. In those days Danny Miller would have been labeled a "mongoloid" and "retarded." Arthur Miller was freaking brilliant and had a reputation to preserve. So this is how people edit their lives.

And yet in the decades since, disabled people and families have seen a sea change. Geraldo exposed Willowbrook. Laws protect the rights of children and adults with disabilities. Forced sterilization was outed as a human rights violation. Elaine Wilson and Lois Curtis got the U.S. Supreme Court to recognize that unwanted, unnecessary institutionalization was illegal. Families saw that including and caring for disabled kids at home was possible and enriching. We are on a path towards embracing biodiversity, neurodiversity, all the children that are born to us.

The problem is, we are in mid-step on that path. Families who were the first to care for disabled people at home are aging out and dying, leaving our people with no one. Many are fighting hard to keep people with disabilities in institutions because there are no current community support systems that they trust. Young adults who were part of the first wave of children to have access to least restricted environments are finding that, after high school, supports are gone and we don't know how to advocate for ourselves. And the young people who have no way to communicate (that anyone can figure out) are stuck at the mercy of social systems and expectations that can't meet their needs. These are the folks at the absolute vortex of the disability rights movement discussion, the absolute tip of the wedge. If their rights can be violated, so can the rights of us all.

We are all stuck in this together, and we cannot forget it. If girls like Katie and Ashley are considered never to be really girls or women, then women with disabilities everywhere need to resist, both because those girls are our sisters and because it only takes a few to make change for many, both good and bad.

"Spoons"

A good analogy for a number of situations. (Personally i relate it to depression/anxiety, at least somewhat).

h/t hexy

(i was trying to come up with something clever viz "there is no spoon" and well it just wasn't clever. probably just as well).

Jerry Lewis sucks. But seriously, folks...

There was this great blogswarm the other day, the "Protest Pity" anti-Telethon marathon. Really an eye-opener if you, like me, hadn't given this particular matter much thought before beyond something like "well, I'd rather stick flaming hot needles in my eyes than watch or listen to Jerry Lewis for five seconds in -any- circumstances, and I expect he probably is icky and mawkish about it, but I suppose it's all for a good cause."

For example, to pick one entry (of many) at random, New Mobility highlights some classic Lewis quotage:

This quote is from a May 20, 2001 interview on CBS News Sunday Morning.

"If it's pity we'll get some money. I'm just giving you the facts. Pity ... if you don't want to be pitied for being a cripple in a wheelchair, don't come out of the house."

The following quotes, archived on Cripcommentary.com, come from Leslie Bennetts' article, "Jerry v. the Kids," Vanity Fair, September 1993:

About activists who criticize him for using pity to raise money:

"It just kills me to think about these people getting publicity. These people are leeches. They all glommed on to being Jerry-bashers. What did they have before that? They're disabled people who are so bitter at the bad hand they've been dealt that they have to take down somebody who's doing good. There's 19 of them, but these people can hurt what I have built for 45 years. There's a million and a half people who depend on what I do! I've raised one billion three hundred million dollars.

These 19 people don't want me to do that. They want me to stop now? [censored] them. Do it in caps. [censored] THEM."

...During the 1991 MDA Telethon, Lewis said that if a person is diagnosed with the disability called amyotrophic lateral sclerosis:

"You might as well put a gun in your mouth."

I liked the way Rettdevil's Rants put it, also, focusing on the infantilization of PWD in general as well as the exploitation of the actual children:

Raising kids to believe that who they are is less than satisfactory really sucks, people. In fact, it'd be abuse if they were typical children. Then putting them on TV to talk about how their lives are sooooo miserable because they're defective? Or videoing them or interviewing their families to talk about how their condition makes their lives soooo impossible? HELLO!...

...It's also interesting to note that children are the only ones they ever ask about things, and parents. It is easier to get children to agree that they are sick and damaged I suppose. Plus adults just aren't as cute on the posters for the most part. It isn't like we die off in vast swathes for most conditions (MD isn't usually deadly, mito can be but often isn't IDed till adulthood even, autism isn't deadly unless your parents off you, Rett only has a slightly increased risk of death, et cetera et cetera...). Adults just don't bring in the money.

Why not make disability something that socially IS instead? We're all going to be disabled someday unless we are struck by a truck or lightening or a flying gymnast who was previously invisible (oh wait. my foot won't let me do that anymore. THAT risk is taken care of...). Making issues medical that aren't makes people feel defective when they aren't-they're just different. It also takes financial advantage of vulnerable populations, and takes up resources from actual medical issues.

Treat medical problems medically. Treat social issues socially. Being different isn't medical. It really is that simple.

On the medical side, cripcommentary notes about the fundraising organization itself:

Let's start with the money. Does it help? Doesn't it make the stereotypes, the appeals to pity, the obnoxious on-air begging worth putting up with?

Yes, the money does help -- some people, with some things. We are talking about a lot of money here. MDA Executive Director Robert Ross asserts that during its 26-year history, the telethon has raised over $600 million. In 1996, the telethon raised $49.1 million.

With all this money coming in, I would expect the direct services provided to people with neuromuscular diseases to be much more extensive, and more relevant, than they actually are. I would expect, for example, that when a person develops a condition which begins to limit his or her mobility, that MDA might come through with some money for access modifications to the home, so that the family wouldn't have to choose between moving to an accessible house (which are hard to find), or hauling the person up and down stairs all day. I would expect some support services for independent living -- someone to assist with personal and household needs, training in things like cooking and cleaning from a wheelchair, and help with transportation. I would expect MDA to provide a motorized wheelchair for anyone who wants one. Such a chair can boost a disabled person's quality of life enormously. Instead, MDA has very restrictive criteria for determining who receives a motorized wheelchair.

Far be it from me to advise a multimillion-dollar agency on how to spend its money. But when the telethon tells viewers that by donating money to MDA, they are answering the prayers of people with MD -- offering them a friend to turn to in times of need -- it exaggerates.

Okay, say the defenders of the telethon, so maybe the money doesn't help people now as much as it should. Isn't it still laudable that the telethon raises so much money to help find a cure?

Ah, the cure. That's the promise that keeps people sending in those checks. That's what keeps this humiliation going year after year. We're getting closer all the time! Jerry Lewis assures us frenetically. He's been saying it for four decades...

*******

Much more at the blogswarm HQ.

What strikes me is how diverse the crowd talking about this is--there are people coming at this making parallels with autism, with deafness, with all manner of conditions. It occurs to me, looking at all this, that while the issues may be different there's a note that's rather eerily familiar to me as well:

The word of the day is objectification, brethren and cistern.

Here on this blog, and at linked conversations elsewhere, we've been talking a lot about the various blind spots of people who supposedly know all about what this means (feminists, progressives) and how that affects various people who don't fit into slot A -or- B. And how goddam frustrating the whole thing is. It's not all about sex, people. It's about -dehumanizing.- Seeing someone as a cardboard cutout rather than a full three-dimensional being with agency and an inner life of hir own, thanks very much. And -one- of the methods for that is, ayup, pity. (Which is to be distinguished from empathy). And no, I don't guess it IS all that harmless: Look at some of those Jerry Lewis quotes. Look at the extraordinary selfishness and callousness revealed there: It's not about the people he's supposed to be helping, it's about his image of -himself- as a great and bountiful Savior. Compare and contrast with...well, regular readers may have an inkling of where I'm going with this.

The way some professionals behave toward their supposed protegés. What happens when someone who -should- fit the to-be-pitied demographic doesn't follow the script. Who isn't properly -grateful-.

Then, oh then, do the fangs come out. And in defense of what, exactly? All those other poor helpless cases that the bad ungrateful freak anomaly is clearly out to harm? Or the suggestion that in fact more of the poor helpless dollies and poster children and pillow angels might not in fact be all that helpless or passive after all?

And while I'm thinking of that, I'm reminded, funnily enough, of this great and hilarious post of Kim's: Poor Li'l Loveblossom. Seriously, I can't possibly do it justice: you'll just have to see for yourself. At the end of it though, she makes this observation:

In this way, maybe Ol' Vanilla Girl me gets the BDSM thing somewhat. There is something visceral in the need to rescue, to nurture after hurting.

This is very astute. Yep, absolutely: there IS a power dynamic here. What I love about Kim is that she cops to this, doesn't necessarily see it as a -bad- thing, that surreptitious toppiness in the "rescuer" role. Because, look, it isn't. It's just part of the human condition, as are all power dynamics. If you're conscious of it, you can do terrific things with it: You can rescue the people or creatures or situtations who genuinely -want- and -need- to be rescued. You can do it as a career; you can do it as a (consensual) game, you can do it in all sorts of ways.

What ISN'T cool is when you -don't- cop to it. When you've convinced yourself that it's -only- about your selfless, selfless, self-sacrifices for all the poor poor poor things who just -couldn't make it- without -your help.-

How you know the difference is, how pissed off it makes you when some of 'em start showing signs that they CAN make it without your help.

Or, in another context, as the woman says:

Because we are NOT the world’s special case, or pet issue.

We are not to be recruited, convinced, or calmed down. We are not here to be enlightened, uplifted or “bettered”.

We want to live. And it’s not about cool or fun or hip . It’s about

Our lives ,Our rights, Our terms.

h/t Arthritic Young Thing and Sly Civilian for the reminder

x-posted at SM Feminists

Triple heh.

if a rueful one: this woman is made of win. Go read. You'll laugh, you'll cry, you'll learn all kinds of interesting shit about fencing and fantasy fiction and fetish and fuckheads. the latter, for example:

I know previously people have disbelieved my stories about Mr. Ho, my epee coach. Things like how “You so stupid!” was a favorite phrase (translated: I want you to do something else). Yesterday, he saw me in the wheelchair for the second time. The first time his wife had told me “Don’t listen to anything he says.” Okay!

This time he looks at me and says, “Why don’t you get up and walk!?” Followed by, “Are you lazy?” and “You don’t want to sit in a wheelchair all your life do you?”

Wow, and I thought only villains in Dicken’s novels actually were so insensitive. Actually, thinking about it later, I realized that Mr. Ho was treading the path of Jesus and Paul with his more verbally abusive version of “Rise and walk.” However, since Mr. Ho’s higher power is….Mr. Ho. I did not receive a miraculous transformation. Perhaps my faith is weak.

Other strange events in the last 18 hours:

*While on oxygen and unable to talk, a woman coming to the wheelchair, laying her hands on my head and praying out loud.

...*Having a guy tell me that most guys would rather be hit in the groin than wear a cup (the guy installing my wheelchair bars explaining to me why guys in epee fencing don’t wear cups) – also said that some guys can get kicked/hit in the groin and not react for several hours. I didn’t tell him that made me want to do some experimenting (Ad in paper: “Males needed for impact test, $20”)

Go read more.

Why, yes, that's -exactly- my first thought

about Aimee Mullins, an athlete, actress, double amputee, model, one of "50 most beautiful people in the world," and Georgetown graduate with a double major in history and diplomacy, who's skied, made track and long jump records on her prosthetic legs;

out of all that, this would be the bit that I'd focus on:

[Mullens] owns 10 different sets of prosthetic legs, from her titanium sprinting legs ("my brother calls them my 'robo-cop legs,'" she laughs) to the intricately carved ashwood museum pieces she once modeled in a fashion show for designer Alexander McQueen. At a recent media event, she sported fashionable white skinny jeans, gold sandals and a dark pink pedicure. "

and lament, does it -have- to be PINK?

and then,

" It almost makes it sound like these (pictured) legs are her “real” ones and she keeps a fashion array of other prostheses to keep her hotness factor up in social situations! eesh. (ooh, the novelty of seeing a disabled person displaying traditional sexuality! tittilating!!) sigh. "

(h/t Kim, and trin; there's no way I'm linking or going over to the source, but you can guess).

Yes, fuck YES. Christina Jesus forbid that a PWD might keep a "fashion array" of prostheses, display "traditional sexuality," or (this is my favorite) make it look like the legs that have BEEN her real legs since she was frigging one year old, if you read the fucking article, are her LEGITIMATE, -real- legs.

I mean, we all know how fucking -important- it is to remember and -keep- the bodies God/Mother Nature gave us, riiiiight?

So many ways to not be "real."

Well, you know what, fuck "real."

THIS is the part that interests me:

First she was a world-class athlete, having run track at Georgetown and holding records in sprints and the long jump. In January she was voted President of the Women's Sports Foundation by the likes of Danica Patrick and Maria Sharapova. Her accomplishments are each impressive enough on their own, but when you take into account that she's done it all on silicone and titanium legs, she's just making the rest of us look bad.

Competitive, you see. Or, as she puts it,

Her athletic background and competitive drive are what propel Mullins through every new experience and challenge. "In athletics, the idea of possibility is presumed," she says. "It's not 'if,' it's 'how.' And that is how artists, and fashion designers, and musicians see the world. It's not possibility, it's potential.

Yeah, it's the kind of story we Americans love: beat the odds, made it to the top, a winner, inspiring. Feel-good. Forget all the other people who -don't- succeed; it makes us/them "look bad."

Well, fuck me, sometimes, you know what, it's OKAY to feel good, vicariously even. Sometimes, it's OKAY to admire the hell out of a remarkable person without butbutbut. And, hello, can we focus on this bit just for a second:

It's not 'if,' it's 'how.' ...It's not possibility, it's potential.

It's the American Dream writ large--the best side of it. Funnily enough, it's the same message I took away from "Sicko," and yes, I'm still planning to do a full post on that.

But yeah, that optimism, the "can-do" thing. I think, you know, sometimes, on the loosely defined (American) left, we can throw that baby out with the bathwater of "o but look, the System, the System, the System is broken. Irreparably flawed. -No-, it isn't enough to say, "here's how we can make things -better-," partially, for now.

It's not good enough. Nothing's good enough. I Blame I Blame I Blame.

Which is really convenient, you know, especially when we're talking about people who may just be more in need of immediate relief than we are.

Or when we want to cover up our savoring of the delicious bitter-bitterness of our own hearts in the safe language of "systemic" blaming.

And you know something else: that is also a titanium-toed kick in the ass for me as well (personal shit, not getting into it right now).

Sometimes, you know what, you got to just go and -do.-

And forgive yourself-and others-for not being fucking perfect the first time, or ever.

Disability rights are womens' rights

Two via trinity:

First, from FRIDA (Feminist Response In Disability Activism):

Kevorkian’s back, making comments to the effect that he is the reincarnation of Thomas Jefferson and responding to disability right opposition by saying “Let the crippled people demonstrate.” FRIDA member Sharon Lamp was actually one of the Not Dead Yet protesters outside Kevorkian’s Southfield, Michigan, press conference on Tuesday, June 5. Hell, Dr. K, just for calling attention to your crackpot crap, Sharon Lamp’s a bigger heroine for human rights than you could ever be. (She’s a heroine in lots of other ways too, for those of you lucky enough to know her.)

...The Kevorkian release spurred an e-mail debate among some of us on the feminist disability side of euthanasia. We felt you might be interested in some of the thoughts, especially since we’ve heard NOTHING on this perspective since Kevorkian’s release. Bear in mind this is simply a stream of consciousness discussion.

which prompted these comments:

I've just seen a list of Jack Kevorkian's assisted suicides, and the vast majority of them are women - at least 70% of them. Many of them were not terminally ill. One of the women that he helped to die is Judith Curren - she was 42 and suffered from chronic fatigue syndrome. During the weeks before her suicide, she was assaulted by her husband. Perhaps this experience and her despair may help to explain why she wanted to end her life.

and

thanks for bringing this up linda. the gender element of jack's victims has almost always been ignored by the press and mainstream feminist groups. although very early on in kevorkian's killing spree a writer did pick up and this and put out an article "the woman problem" or "jack's woman problem" something like that. after this article came out jack began to show more gender diversity-but in the end:
71% of his victims were women
67% divorced, widowed, or single
72% experienced recent declines in health
75% showed no evidence of terminal illness!!
5 victims showed no signs of physical illness or impairment.

and

there is clearly a gender bias here, though I would not construe it, as the reporter seems to do, that jack has a "woman problem", nor would I construe it as jack "targets" disabled people. Rather what needs to be ascertained is if more women than men sought him out. And why did he assist more women than men to die. Did he see as many men patients as women patients? But also, what about assisted suicide more generally - are women more likely that men to generally seek out assisted suicide? Few feminist analyses have addressed this, though some earlier ones argue that women have different reasons from men for seeking assisted suicide, like poor pain relief, higher rate of poverty, higher incidence of depression, sexism, and domestic violence. One of the feminist arguments I read in favor of it said that "it is not clear that women are more likely than men to be euthanized or extended the means for physician-assisted suicide." But from what I have read, the opposite seems to be the case.

to which trin responds:

Personally, I think "mainstream fems" ignore these facts because mainstream feminism is led, generally, by white, middle-class, able-bodied women. There really isn't all that much picking up of disability rights issues, except from a few people. There's often a tendency to read us, to care about what we have to say, but... more to use us as resources than to actually take on our issues in a meaningful way. We're something to read. We're a reminder. We're not the focus of feminist activism. (Witness the times on a certain ill-starred LJ community that I posted disability rights related posts and got asked "this is great, but why is it feminist?")

And I've been thinking about that. On the one hand... it's not entirely realistic or fair to expect everyone to give equal time to every issue. I know I don't post as often on race-related stuff, for example, as the POC I read. And I'm not sure that's a horrible failing -- though I do also think I should do/say more.

But on the other... it really is something you see. We all talk about intersectionality and about supporting one another. But how do we do that when people don't really know what others' issues are, and when people can easily write them off as "pet issues," etc.?

...(For the record, I'm not sure quite how I feel about the assisted suicide issue. I do, however, worry about the disparity between the assumptions that when WE want to die, that should be taken seriously and assumed to be rational reflection of our true wishes, but when AB's want to die, that means they are thinking in a disordered way, unhealthy, irrational, and need professional help.)

For the record, from an AB perspective, I'm not quite sure how I feel about euthanasia/PAS either. I admit I hadn't been following the Kevorkian business for a good while now, and hadn't really had much thought on him or the euthanasia issue except for

1) he -does- seem like a creepy guy, and I can see the unease with his methods as well as, yep, the slippery slope, and yes, I am aware of the history of targeting PWD for "culling." I had been under the impression that he only "helped" people who were in the very end stage of fatal diseases, possibly because that's what i would have -wanted- to believe. And I hadn't considered the angle of possible gender bias; that is interesting.

2) at the other end of the spectrum, I still think what happened with say Terri Schiavo was a travesty. And having been witness to hospital procedures with two grandparents who stayed on in life support limbo longer, i think, than they should have had to after a certain point of no return (i remember my father talking about thinking his mother, my grandmother, looking like she was "in hell," and not buying the whole doctorly, "don't worry, she's not aware of anything." and my father is not prone to hyperbole or flights of fancy).

What I was far -less- ambivalent about from the beginning, but this just clinches it, the "Ashley treatment." also via trin and FRIDA, this Seattle Post Intelligencer article:

Seattle Post Intelligencer, June 15 2007
Opinion
The other story from a 'Pillow Angel' Been there. Done that. Preferred to grow.
By ANNE MCDONALD GUEST COLUMNIST

Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her -- Pillow Angel. The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children's Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court. At the time of the initial publicity about growth attenuation, Ashley's parents wrote on their blog: "In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

((more, must read)


From the git-go, the story, and the way Ashley's been referred to as a "pillow angel," filled me with the sort of creeping horror I'd only ever associated with Gothics and "Johnny Got His Gun."

The latter which, fictional though it may be, kind of sums up the problem from both ends, really: once the guy finally learned Morse code, neither his requests to go outside nor his request to be killed were granted.

It's the same thing that horrifies me about Terri Schiavo or others lingering on life support with no hope of ever getting off or even regaining consciousness (or at least human communication of that consciousness) as does the "Ashley Treatment." The idea of being consigned to a kind of death-in-life, for the convenience or more obscure gratification of others.

As for the Ashley treatment: well, the removal of any signs of her -sexuality- ought to give any feminist pause. As should the go-ahead for drastically invasive surgery without first attempting to see if, indeed, the girl is capable of communicating in some other way. Never mind if she ever "uses" her sexuality; is that the point? We'd be horrified by someone raping someone in her condition, right? Tell me, does going -inside someone's body- and -altering it permanently- not seem like a particularly profound rape to anyone else?

And what could be more "objectifying" than making a "Pillow Angel" out of a person...especially if maybe, just -possibly-, (and no, we don't any of us -know- this, no) she might have a chance of being something else?

Speaking of the Vice War:

via The Angry Black Woman, this story:

Jonathan Magbie

Jonathan Magbie

On September 24, 2004, 27-year-old Jonathan Magbie died while serving a 10-day sentence for marijuana possession in a Washington, D.C., jail. Magbie, a quadriplegic since a drunk driving accident at the age of 4, was a first-time offender.

D.C. Superior Court Judge Judith E. Retchin defied a presentencing recommendation that Magbie be given a term of probation — a sentence that even the prosecutor found acceptable.

Retchin imposed the sentence because she didn't like Magbie's attitude, and the car in which Magbie was riding when apprehended had a loaded gun and cocaine. Magbie had told Retchin that marijuana made him feel better and that he didn't think there was anything wrong with using it.

A miscommunication between jail, hospital, and court officials gave Retchin the impression that the D.C. jail could handle Magbie's medical needs — primarily, a near-constant need for ventilation to help him breathe. In fact, the jail could not accommodate him, but by the time Magbie reached a hospital, he was dead.

Ironically, D.C. voters passed a medical marijuana initiative in 1998 with 69% of the vote. The initiative has never taken effect because Congress blocks its implementation. Had the law been in effect, Magbie might have been able to present a medical defense in court, and might be alive today.

Yes well of course there are a number of conclusions one can take away from this little story, besides the part about the maryjane, aren't there. Starting, as ABW notes, with the color of his skin. (Three guesses: it's not the same as Paris Hilton's, and presumably neither is his class). Another might have to do with gee golly, quadriplegic? Oh yeah, we can accomodate y--oh no, oops, guess we can't, oh well, sorry about your DEATH.

In jail, that is. In jail for toking marijuana, because it makes him feel better. Made.

But punishment is really way more important that helping people -feel better.- Besides, he should've just taken Vicodin or something.

I mean, presumably the person who originally caused his condition, the drunk driver was severely punished. We hope so. It'd make up for -everything.- If not, some fuckoff celebritante's tears will do for the moment, I guess. bread and schadenfreude. What else is there?

Oh yeah, and: the judge "didn't like his attitude." Chew on that one for a while.
This is after all the point: not safety, not even adherence to law, not what's best for everyone: RESPECT MAH AUTHORITAH.

yeah, I can't imagine where it all went wrong.

Satire's based in reality, you know

Anyone remember an 80's Cheech movie, Born in East L.A.?

The movie is about a Chicano who authorities deport to Tijuana even though he was born in East Los Angeles and thus has American citizenship.

The film was based on a novelty parody song (1985) of Bruce Springsteen's "Born in the U.S.A.", written by Marin and released on the 1985 Cheech and Chong album Get Out of My Room"...

Yes well anyway. I remember the flick. It was about what you'd expect. I probably laughed.

Not so funny when it happens for reals:

U.S. Citizen Illegally Deported From Jail Is Missing in Mexico
ACLU and Law Firm Seek Federal Help to Find Developmentally Disabled Man

Monday, June 11, 2007 printer iconprinter version

LOS ANGELES — Federal immigration officers and the L.A. County Sheriff's Department illegally deported a U.S. citizen last month, the ACLU/SC has learned. He is missing in Mexico, and today the ACLU/SC and the law firm of Van Der Hout, Brigagliano & Nightingale file a lawsuit in U.S. District Court seeking his safe return.

Pedro Guzman, 29, was born in Los Angeles and raised in Lancaster, California. He was serving time at Men’s Central Jail for trespassing, a misdemeanor offense, when he was deported to Tijuana May 10 or 11. Mr. Guzman is developmentally disabled, does not read or write English well, and knows no one in Tijuana. He declared at his booking that he was born in California.

He spoke to his sister-in-law by telephone from a shelter in Tijuana within a day of his deportation, but the call was interrupted. Family members traveled to the city in an attempt to find him and have remained there, searching shelters, jails, churches, hospitals, and morgues.

There are no circumstances under which government officials may deport a U.S. citizen. Federal officials have refused requests by family members and a private lawyer to assist in the search for Mr. Guzman.

"This is a recurring nightmare for every person of color of immigrant roots," said ACLU/SC legal director Mark Rosenbaum. "Local jail officials and federal immigration officers deported the undeportable, a United States citizen, based on appearance, prejudice, and reckless failure to apply fair legal procedures."

"What has happened to Pedro Guzman is a tragedy," said Stacy Tolchin of Van Der Hout, Brigagliano & Nightingale. "His life may be in danger, and the government must act immediately to locate him and return him to the United States."

Jail and Department of Homeland Security officials failed to identify Mr. Guzman’s disability and improperly obtained his signature for deportation from the United States. "The procedures for determination of legal status implemented by Los Angeles County deputy sheriffs … fail even minimal criteria for constitutional due process," the lawsuit states.

Sheriff's deputies trained by U.S. Immigration and Customs Enforcement conduct immigration checks at L.A. County jails. The ACLU and immigrant-rights groups warned that involving local law enforcement in immigration policing would lead to mistaken deportations and violate the due-process rights of inmates.

Anyone with information about Mr. Guzman can call the ACLU/SC at (213) 977-9500.

h/t And We Shall March

You know what I also love about this? About how the current atmosphere in which this sort of thing is more possible than ever, is brought to you courtesy of many of the same people who tend to rail against too much government intervention.

And of course, there's -nothing racist- about any of this, ever. All perfectly fair and reasonable. Gotta defend the boundaries, don't you know. Good fences make good neighbors, and alla that. Perfectly sane and reasonable.

And hey, even if it's not, it's not like it's your ass ever gonna be carted away in the dead of night, never to be heard from again; no need to speak up.

Right?

the stupid, it BURNSSSS, it BURRRNNNSSSSS...

sly civilian unearths this gem from...somewhere:

Commentor LMYC offers the following metaphor for the impossibility of consenting to one’s oppression:

Someone with mental illness could come up to me tomorrow, literally ask me to light them on fire, and say, “But I’ll ENJOY it so it’s okay!”

Mmm. The stupid…it sustains me. Despite many trips to the ward as a kiddo, i can tell you something I never saw, or even heard of. Someone lighting themselves on fucking fire to kill themselves. I heard just about everything else, including a whole lotta folk who burned themselves in a limited fashion as a practice of self-injury. How many folk do you know outside of Buddist war protestors who have set themselves (or asked random bystanders to) on fire? Really?

Or was that just a reflexive cheap shot on how scary those mentally ill people are who don’t ask you to set them on fire but make you uncomfortable by their very existance?

Congratulations, scary lady, you win the “Why Don’t You Lay Down Right Here While the Bus Goes Over You” award, which remembers all the things people have said to scuttle the struggle for human dignity in the name of promoting human dignity.

All I have to say is I dunno about -that-, but at this point I'm fairly certain that if -some people- already -were- on fire, I would not, in fact, piss on them. Even if they asked.

and IF you had a brother, would HE like herring, and say how many pinheads can dance on the head of a seraph, and at what point does the possibly mythical but still annoyed creature just say "fuck this" and go get a shampoo and a bottle of Advil?

Mayday

Today is...

1)
Blogging Against Disablism Day, via Diary of a Goldish. see site for participation details.

h/t Spotted Elephant via Renegade

2) Beltane (warning: site plays music)

3) International Worker's Day: see brownfemipower, Sylvia, and this brief historical note via Rose's Place

Today is NOT the day of the Carnival of Creative Writing, which has instead been pushed back to May 11. Please make a note of it. Theme is "renewal." No crocii.

Today is also not the National Day of Truthtelling [about sexual violence], which was on Saturday, but you can still read about it at Ubuntu.

Disability Carnival #13 is up

...at Ballastexistenz. Lots of good stuff; mosey over and check it out.

(did i really just say "mosey?" i did, didn't i. ergh)

best comment on this bullshit yet:

This summary is not available. Please click here to view the post.

Finally, a Feminism 101 blog

no, really, that's what it's called. Check it out.

Meanwhile, 33rd Carnival of Feminists is up at Empowerment4Women.

Some other good carnivals to check out, I've been meaning to say:

The Carnival of Bent Attractions. This month's edition at Viviane's Sex Carnival (NSFW)

Carnival Against Sexual Violence, this edition at Abyss2hope

The Erase Racism Carnival, next edition to be held at Racialicious.

The International Carnival of Pozitivities, latest edition up at Creampuff Revolution.

The Disability Blog Carnival, latest edition up at HIV/AIDS, Deafness & Disabilities

Finally, the brand spankin' new Carnival for Creative Writing recently posted its first edition in three parts.

You know, just because -you- take a shit anywhere you like...

...and/or, on anyone that's convenient,

doesn't mean the rest of the world is like you.

The rest of the world isn't just like you! What a concept!

Oh, what am I talking about? This story, via Blog of the Moderate Left:

The St. Paul Pioneer Press sought out a Republican party official and blogger as a voice against a bill working its way through the state legislature. But in quoting the official, the Pioneer Press failed to note that his blog has included questionable and potentially insensitive statements regarding the bill in question.The bill, House File 1015, guarantees restroom access to people suffering from diseases such as Crohn’s Disease and ulcerative colitis, which make it more difficult to control one’s bowels. The bill would allow those so afflicted to use businesses’ private restrooms, waive liability for businesses that do and create a fine for employees who refuse to allow customers to use the restrooms.

In the article, Pioneer Press reporter Rachel Stassen-Berger sought out comments from Michael Brodkorb, GOP chair of the 38th District, a former consultant for Rep. Michele Bachmann, R-Minn., and author of the Web log Minnesota Democrats Exposed. Stassen-Berger quoted Brodkorb as objecting to the bill, saying, “In my heart of hearts, I just don’t believe that we need legislation that dictates that level of involvement in businesses.”

Brodkorb had also expressed his objection to the bill on his own blog using far less diplomatic language. Indeed, both Brodkorb and others who commented on his site mocked the bill, dubbing it the “Freedom to Poop” bill, and ridiculed the idea that anyone would need access to private restrooms.

In his initial post on the bill, Brodkorb summarized the bill as follows: “Any retailer that does not allow people with ‘eligible medical conditions’ such as Crohn’s disease, ulcerative colitis, or any other inflammatory bowel disease like irritable bowel syndrome or presumably “mud butt” would face a $100 fine for not allowing these non-customers to use the bathroom at their establishment.”

A number of commenters on the site quickly joined in mocking the idea.

A poster calling himself “Biggster Kahuna” said, “I certainly hope our nanny-state friends in the DFL will have the courage to appropriately amend this bill to include protections for our Minnesota men and women, our neighbors, suffering from Chronic Masturbation Syndrome.” Another commenter, “Dumbing it Down for the Left,” said, “Now they are talking about parking issues, and how malls and gas stations will have to have frequent pooper parking places. This is way too funny."

...And commenter “RabidRepublican” said, “I hope this never passes. It would be way funnier for someone to just take a crap on the floor of the businesses that won’t let them use the can. I suppose next the badas* govt (sic) will make a law making that illegal.”

Hilarious. Hey, you know what would be even funnier?

...eh, I'll leave it to karma and/or your imagination to finish that. I'm tired.

Just:

You know, you'd think a bunch of assholes on legs would maybe have at least some empathy for this particular issue, if nothing else, disability-related or otherwise.

But, oh yeah, that's right:

The whole POINT of being a total asshole is never having to have any empathy.

And never having to worry about where you dump your shit.