Tuesday, June 19, 2007

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?

17 comments:

Sassywho said...

I too have been thinking about these issues over the past few days... women, disability, feminism, dignity, reproduction and death... it seems the closer we get to pro-longing either the less humane life becomes.

Alon Levy said...

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.

What makes you think they didn't?

Allie said...

The term "pillow angel" creeps me the fuck out. Reading Ashley's parents' blog is like an exercise in objectification. It's like they're trying to figure out what's best for a pet cat that they enjoy spending time with...sure, they appear to care about her very much and they're putting a lot of effort into taking care of her, but they don't come across as thinking of her as human. I also really wonder how they relate to Ashley's non-disabled siblings, and what the sibs think about all this.

Daisy Dee said...

I first read about Ashley on a "cure" type bulletin board, regarding stem cell research. One guy asked, if stem cells are found to cure or substantially improve brain/neurological injury, it might be possible to improve Ashley's awareness in the future. He reminded us that home computers, digital cameras, HIV drugs, GOOGLE EARTH and many other technological marvels were not available even 15 years ago.

If Ashley receives some sort of stem-cell treatment and improves, what do you think the teenaged or adult Ashley will think/feel, about what her parents did to her?

That's what made up my mind for me.

Life is static. We have no absolute proof that Ashley will always be a "pillow angel" (barf!) just because her parents (who won't always be around anyway) have proclaimed her so, and have tried to keep her frozen in time. That shit don't work.

Enjoy your blog, BD.

Daisy Dee said...

"If Ashley receives some sort of stem-cell treatment and improves" **

**This statement depends on having intelligent, civilized people in government, of course, instead of the cro-magnon fools we have there now.

belledame222 said...

thanks, dd, and welcome.

Alon Levy said...

One guy asked, if stem cells are found to cure or substantially improve brain/neurological injury, it might be possible to improve Ashley's awareness in the future.

I'll ask the same question: what makes you think the parents and the panel of ethicists that they were made to consult didn't consider that option?

And what credentials as a stem cell researcher does the guy on the bulletin board have? It's not enough to suggest something as a hypothetical. Speculating about what stem cell research may or may not do in the future without knowing what exactly is wrong with Ashley's brain and what stem cell research is capable of is science fiction.

Daisy Dee said...

I'll ask the same question: what makes you think the parents and the panel of ethicists that they were made to consult didn't consider that option?

I can only ask YOU, as hostile to religion as you are, why you think these religious fanatic parents are to be trusted, on the face of it? I certainly don't.

Did you read that blog of theirs? It's GROTESQUE. Do you think someone labeled an "angel" is being regarded as an ordinary person with human rights?

Why are you usually so anti-religion, yet in this instance, you are trusting the fundies? Weird.

"Ethics"? Sorry, you're talking to an anarchist here. "Ethics" (in this instance, and particularly "medical ethics"--practically an oxymoron) are as socially constructed as disability, gender, class, education, etc.

And what credentials as a stem cell researcher does the guy on the bulletin board have?

I'd give you the link, but the board doesn't link to non-members. I am not sure of his credentials.

It's not enough to suggest something as a hypothetical. Speculating about what stem cell research may or may not do in the future without knowing what exactly is wrong with Ashley's brain and what stem cell research is capable of is science fiction.

Possibly, but it brought home to me the fact that I was making a difference in the way I was regarding Ashley, depending on what I considered her (also fictional, at this point) future to be, and I don't do that for everyone. Just as Trin, above, said that suicide is considered different for the disabled than for the able-bodied.

You either think disabled people are people with equal rights, or you don't. Period. I see no in-between, but I guess you do?

And as for stem cell research, various organizations that represent people with brain/neurological injuries have officially backed stem cell research and have stated that stem cells might well bring about some improvement, if not total "cures"--are you saying that will never happen? How do you know that?

Grandma Daisy said...

testing

belledame222 said...

and in any case, it begs the question of why it was necessary to perform that grotesque and invasive surgery on her. The woman who wrote that article still can't (barely) move or speak, she's quite clear about that. Maybe stem cell research will help her do so one day and maybe it won't. She still has a mind and a life. She's not a -doll.-

Grandma Daisy said...

Sorry BD, I first logged on under another name, and I am the same Daisy, as above! (((confused))) (((embarrassed)))

Been in the heat too long, and my apologies for flakiness!

belledame222 said...

oh, okay. Hello!

Alon Levy said...

I can only ask YOU, as hostile to religion as you are, why you think these religious fanatic parents are to be trusted, on the face of it? I certainly don't.

Because they didn't do it in a day. They went through hoops to do it, as they should have.

Personally, I trust panels of ethicists who know the specifics of the situation more than I trust hacks who subscribe to ideologies that went bankrupt in the 1930s. Your mileage may vary, obviously.

Mat said...

hacks who subscribe to ideologies that went bankrupt in the 1930s.

Like eugenics?

Alon Levy said...

That, or anarchism.

Grandma Daisy said...

John Lydon is bankrupt??? Who knew? :p

Grandma Daisy said...

hacks

Calling people names is unnecessary, uncivilized and rude, Alon. (You sure YOU aren't the anarchist here?)

And besides that, if I had a heavily- trafficked blog, you'd be kissing my ass. ;)