Friday, January 12, 2007

I am tired

Because fear and hatred of disabled people hides in people's hearts in the same way as sexism, transphobia and racism:

Ashley is not a "disabled" person that can enjoy a stroll down the mall for social stimulation. A 3 month old mind cannot do such a thing.

Personally, I'm tired of liberal whiners thinking they are better than everyone else.

The word disabled gets used way too much. If you can make your own decisions and think for youself, then guess what, you're not disabled.

Ashley on the other hand can do not of these things, her I would considered disabled.
Because so many people deny the slippery slope, but during the Schiavo case a common argument to silence the voices of disabled people was that Terri wasn't disabled but brain-dead, and now a common argument to deny the voices of disabled people is to claim Ashley's level of consciousness (higher than Terri's) is comparable to a turnip and also irrelevant to our experiences:
The problem is modern medicine can keep a turnip alive for many years i.e. 100 years ago this child would have died at a very young age as mother nature intended. But since we have to play God and keep the turnip alive then we also get to play God and choose when/how to trim the turnip when it grows in a way we deem unfit. Basically this treatment is ENTIRELY for the parents benefit and as such it does help the parents but please drop the delusion that it helps the vegetable because the vegetable would be best off with as little pain inflicted as possible i.e. let the vegetable die.
Because I know some supposed "turnips" online who slay me with their sharp intelligence:

Please remember that disabled women are women, too. So much of these discussions go back to a description of disabled people as being passive recipients of care from “mostly women”, leaving disabled women totally invisible in the whole thing. I’ve seen really good feminist disability writing (try Jenny Morris), but feminist writing that approaches disability primarily as a caregiving issue isn’t generally it — it casts women as the victims of the existence of disabled people (including disabled women) and usually proposes horrifically oppressive solutions to the problem of our existence.

Because this isn't about just one child:
The action is in response to the AMA’s sanction of the “Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case. This AMA owned-journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.
Because there are other signs that society is becoming more impatient with the existence of disabled folks:
For example, Dr. Goldberg said, a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples “losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.”
Because so many of our supposed allies seem unable to listen or offer real support beyond their own fears and agendas:
If I were this girl’s caregiver, my worst fear would be that there would be a chance one day that I may not be around to care for her. And that she might end up in hospice care, where she could be sexually abused and end up pregnant. And that because she’s white, there would be a lot of antagonism towards aborting said pregnancy to spare her the misery and that a bunch of “pro-lifers” would stake on the hospital, Terri Schiavo-style, enamored of the idea of a pregnant white woman without a real will of her own. In other words, the perfect baby incubator. There’d be moaning and wailing and sentimental rhapsodizing about getting a “miracle” baby out of this poor girl. Doctors, under all this pressure, would cave because it’s not like she can really do anything about it. And then the baby would be born and everyone would be all in raptures and Reader’s Digest would have an article about it and Ashley would be reduced from a human being to a baby incubator. So you better believe I’d want to just circumvent that. This situation has nothing to do with eugenics unless you’re paranoid enough to think that the genetically normal offspring of college-educated white people are a target.
Because of the disrespect:
While I certainly don't envy your situation and feel blessed that I am lucky to not be disabled, I am sickened by your rantings. Who exactly do you think you are? Your disability is NOT an entitlement to place judgement upon others.

95% of the posters that agree with you are only agreeing out of PITY. They are too short-sighted to see that your particular situation, contrasted with Ashley's, is like night and day. Instead, they ignorantly assume that your ridiculous 'I am Ashley' statement is true simply because you both have severe disabilities.

Why don't you reveal your true motivation? It must be nice to have a link to your blog on CNN, right? Enjoy your fifteen minutes of fame but, seriously, quit with this betrayal nonsense. I mean, come on, to refer to her parents as "parents" (I'm referring to the quotation marks)? Are you actually advocating that they did what they did for any reason other than absolute love, caring and adoration of their daughter?

You may be disabled, but you're still a judgemental, self-righteous prick.
Because the weird convergence of attention and disregard is a kind of quiet violence:
Maybe, just maybe, bloggers who are disabled don’t really want to discuss shit like this over and over and over again–especially when people are not just discussing their right to access or something like that (where the presumption of humanity deserving of life is at least present), but are actually challenging disabled peoples very right to live as autonomous respected human beings. Maybe bloggers who are disabled really don’t feel like debating whether or not they are “burdens” worthy of extreme forms of violence just to suit able-bodied people. Maybe they aren’t interested in debating whether or not they have a right to be alive.

25 comments:

Anonymous said...

Thank you.
Janet

imfunnytoo said...

Blue...(sigh) great post. Wonderful post. Direct post. Weary post.

Mike Dorn said...

This is just a tremendous post. You said what I wanted to say ... and offered the evidence. MD

Penny L. Richards said...

What Mike and others said--thank you, Blue. And I'm tired too.

spotted elephant said...

It is a great post. I wish we could get a break from all of the hate, and all of the nonsense.

Anonymous said...

Nice post!! I think most of the hate and prejudice toward the disabled is subtle and "quiet violence". It is why it is so hard to identify and fight against at times. It is much harder to make valid complaints about being pelted with discrimination and hate when the methods are subtle. Much more likely to appear to the majority as whiny.
but that is just the take a gimpy med student who is new to the disabled blogging world.

brownfemipower said...

I read through a couple of the links, and I had to stop I was so angry. That crap over at David's blog--gah! I'm noticing that there seems to be an element in the crap disabled folks have to take that isn't there with racists--that guilt crap--I mean, David had quite a few people telling him "think about the lives and feelings of your poor parents"--WTF???? What the hell is this guilt tripping crap??? As much as it as I have seen just during these conversations, I wonder what the suicide rates must look like in the disabled community. And it makes absolute sense to me why disabled activists were so outraged over that one movie that clint eastwood made. This guilt trip thing is something that seems to infect the daily lives of those who are disabled.

grrr.

bfp

Kay Olson said...

The guilt-tripping seems to be about how be should be grateful because people are nice and donate to telethons and build ramps and allow us to participate in the world. They raise us instead of aborting or giving us up for adoption or sending us to institutions. It's a way of denying us agency and complaining about how we don't contribute enough all at once.

Yeah, it's different from racism. I think we're much less likely to get the vile forthright hatred usually, though you can't tell that from some of the links above.

brownfemipower said...

It's a way of denying us agency and complaining about how we don't contribute enough all at once

Yeah, that "contribution" thing also seems to be a very big thing. Like that hostile commenter said, if you can contribute, you're not disabled, and if you can't contribute, well then you're worthless and deserve to be subjected to horrific surgeries.

I wonder--has there been any marxist/socialist critiques that center disability? I'm asking because it seems that a capitalist system will never be able to change in a significant enough way that disabled peoples will be able to rip up that "productive" standard. It doesn't seem to me, at least--but admittedly, I'm a bit skeptical of capitalism anyway. but it does seem like "productive" and "contributing" stems from a system that values "production" above all else.

Penny L. Richards said...

Femi--you might want to track down an issue of _Radical History Review_ from last year, that was a special issue on disability history--it's available as a stand-alone volume.

Anonymous said...

Hey Femi, I was attempting that here, from a historical perspective. Marxist analysis, but if I'd said so, ABU wouldn't have paid any attention to me! :P

http://www.disabilities-r-us.com/community/index.php?PHPSESSID=acb8d0a2efe3de79642d0ccdec6b42e3&topic=50.msg186#msg186

Mental age, my ass. When I hear the words "mental age"--I reach for my revolver.

If my mother (R.I.P.) hadn't had such a huge show-biz ego, and hadn't simply dismissed the prognosis given to most children with CP 50 years ago, I'd be as ignorant as anyone else warehoused for a lifetime. As it was, no kid of hers was going to be "retarded"--and that was that. Not an option. As a result, I wasn't.

I wonder how often it works the other way, with parents simply accepting the conventional wisdom dispensed by the MDs? (Medical Deities)

brownfemipower said...

thank so much for the leads mrsoul and penny! They are much appreciated! mrsoul, reading through your post--there is SO much there! I'm gonna be busy for a while! Thanks!
bfp

Kay Olson said...

I've "heard" Lennard David talk some about socialist/Marxist takes on disability rights and how the ADA could have been much different from that, though I don't recall if I rad it among his books or hears it from him at a conference.

And Marta Russell's book Beyond Ramps: Disability beyond the social contract is a good book about how disability fits into a capitalist society.

I'm curious what else I can find among my books here on the shelf, BFP. Some of the more theoretical ones I browse instead of reading cover to cover. So let me look around a bit for more.

Kay Olson said...

Mr. Soul, I recall David Pfeiffer, who ran one of the academic disability studies organizations (SDS) until his death, saying something once about how IQs of the average "mentally retarded" people went up significantly when fewer were being institutionalized. Really not a coincidence, I think.

Anonymous said...

"As it was no child of hers was going to be "retarded"-- and that was that. Not an option. As a result, I wasn't."

Gosh. It would really be wonderful if you could just get the word out to all the parents. You know - the ones who have accepted retardation as an option for their children. And just let them know that if they didn't think it was an option, the outcome would change for their children.

You should get your own TV show so you could get the word out!! That would be really, really cool!! Awesome, even!

Ruth said...

thanks, Blue. I was appalled at the comments left on several blogs, including David's, but certainly not limited to his. You did a great job of summing it all up.

Kay Olson said...

Aha!

BFP, if you haven't seen this already, here's .pdf file online that discusses disability from a materialist perspective. In particular, scroll down to page 8. It references a couple books by Davis, by the way, so I'm feeling good that my memory isn't faulty.

http://www.jape.org/jape49_2.pdf

Anonymous said...

Whew. Blue, your blog, this post, it feels like a safe haven. To the point, articulate, but not at all unkind. Thank you for that.

The Goldfish said...

As usual, several nails on several heads. Thanks for this.

brownfemipower said...

thanks so much blue!

Sarahlynn said...

"For example, Dr. Goldberg said, a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples 'losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.'"

FWIW, that was me. Well, when I was 28 I had the blood test followed by the amnio. At 31, I skipped the blood test and went straight for the CVS, a procedure slightly more dangerous (to the fetus) than amnio.

There are several reasons for this, of course. But there are reasonable arguements for prenatal testing.

--Sarahlynn, mother of a child with disabilities

DKi617 - yes.

Kay Olson said...

Hi Sarahlynn!

I thought of you and other mothers I know who've got some experience with children who have Down Syndrome (and the kids -- some grown now -- too) when I read about the new screening guidelines.

It's a tricky subject because I also agree that there are some good arguments for prenatal screening. And I believe in each woman's freedom of choice about her pregnancy. But as you know, there's lots of societal ignorance about disability that accompanies the changing atttiude around the tests.

Have you read the book "Defiant Birth"? I'm set to review it here soon, but it contains an enormous amount of grief and anxiety for some pregnant women who were first hounded to take the tests, than expected to abort. Many of those in the book gave birth to children with no signs of what the tests indicated, or much less severe difficulties.

Kay Olson said...

Mr. Soul said: If my mother (R.I.P.) hadn't had such a huge show-biz ego, and hadn't simply dismissed the prognosis given to most children with CP 50 years ago, I'd be as ignorant as anyone else warehoused for a lifetime. As it was, no kid of hers was going to be "retarded"--and that was that. Not an option. As a result, I wasn't.

Some other commenters haven't been thrilled by what this may say about actually "retarded" folks.

Noted.

But part of the stigma of developmental disabilities is also the low expectations, isn't it? Terminology aside, I wonder what the world would look like if those diagnosed as intellectually inferior were not limited by what people believe they can't do. There are a lot of people out there who were told they didn't have the brains to enter a spelling bee or whatever. I think this does more to show we are all of one group, than divided between those who can and can't.

Anonymous said...

But part of the stigma of developmental disabilities is also the low expectations, isn't it?

I agree. I recently posted on my a request for any transpositive information regarding the intersection of trans and developmental disabilities. When I got the email, I wondered how people would wrap their brains around that one; namely, that a sense of one's gender exists independently of other types of cognition and self-awareness.

I think this is a wonderful, and very, very, deep, development within trans communities and DD communities.

Given the misunderstandings around both, though, I think we will have much work to do as allies and advocates.

Kay Olson said...

Catching up with comments:

Jay: I think this is a wonderful, and very, very, deep, development within trans communities and DD communities.

Ooh, I agree. Exciting, really.