Wednesday, October 10, 2007

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.

39 comments:

Renegade Evolution said...

this is still making me ill.

Anonymous said...

Posted about this on lj, kept having to preread and delete paragraphs because I couldn't stop insulting people's half-cocked reasoning processes for such things. 'Oh, I don't want her to suffer the indignity' my ass. She said it was hard thinking of herself as a mother when she did particular caregiver duties. To me it sounded as if she didn't want to deal with the eventual periods because most other mothers don't have to at her daughter's age, so she wanted to get rid of it. And it isn't as if I haven't heard those kinds of statements (the hysterectomy more than the I wish they were smaller (I haven't heard the latter offline yet) in rl before, including from someone I used to work for who wasn't her daughter's caregiver in any physical meaning of the term (and yes, I was in a position to know) and yet, she said a hysterectomy 'wasn't a bad idea' anyway. The only odd thing was that she admitted her reasoning being that she didn't want to deal with it. I also notice that position never seems to be admitted online, although it often is off, if the topic comes up. It seems like just the idea of adulthood (& older childhood, for some people) and the often messy things that come with it makes people run as far away in the opposite direction as humanly possible.

Adorable Girlfriend said...

This is nuts. Nuts!

Anonymous said...

I forgot my blogger password. Prosehack here.

There is one cogent argument I have heard in regards to procedures like this. In one case, the mother was pressing for the severely disabled daughter to have a hysterectomy so that she would not develop sexually, and more importantly so that she would not be able to be made pregnant. The mother worried that, because the daughter would probably outlive her by a good bit, that the younger woman could become a victim of sexual abuse in an institutionalized care giving situation (which statistics say happens often) and become pregnant.

I know in Florida we had a severely disabled woman who did become pregnant, and the resulting furor over her having an abortion was something I would never want my child to be at the center of--aware of her surroundings or not.

On the other extreme, you have your "pillow angels" who are intentionally treated to remain small and underdeveloped to make them easier to handle (lift, bathe, etc). There's a website with one particular family making their case. Again, the reasoning is that the care giver is better able to care for a smaller disabled person than a larger.

While I abhor the impingement on a human being's rights, I admit some division. My only hesitation is that these treatments keep the child in a loving safe environment rather than institutionalized care.

And honestly, we spay our animals, and there are those who say that's morally abhorant as well. (I'm not comparing this child to an animal in a negative way; rather, pointing out that there are those who argue for the sentience of our non-human children, and thus their right to self-determinacy.)

CrackerLilo said...

Oh holy mother! Another kid! Again! I'm still tearing up for Ashley.

Does anyone ever suggest neutering a severely disabled boy like a dog or cat to make him easier to care for? I've never heard of it.

Anonymous, another solution is simply screening employees of nursing homes and having them work in teams for intimate care.

A friend once told me that the disabled is a group that anyone can join at any time. I have never forgotten that, ever.

*hug* because clearly this hurts you.

andi said...

"And honestly, we spay our animals, and there are those who say that's morally abhorant as well. (I'm not comparing this child to an animal in a negative way; rather, pointing out that there are those who argue for the sentience of our non-human children, and thus their right to self-determinacy.)"

If this was done to a healthy woman the dr would be up on charges of mutilation - if you could even find a Dr to do it. Many Dr's won't even sterilize a healthy woman before she has kids...but because this child is disabled it's ok to have a separate standard of care for her, in your mind, right?
Nice to know that there's a class of people that you don't consider people. Or deserving of the same care as you would want for yourself - and don't misunderstand here part of care is protection from mutilation. There was a case a while ago where a dr was charged with all sorts of things for putting his initials on a healthy woman's uterus..but it's ok to remove a healthy organ from a child's body because people don't think she fits their definition of worthy.
Got you.

Trinity said...

"your words are saying to me and a whole load of other people, so do not get defensive puh-leeze - is that because disabled women are equivalent to cats, people having the opinion that disabled people (women usually) are equivalent to cats, and their carers equivalent to the owners of cats, who have just as much right to take little katie or ashley or whoever, down to the vet and have him shave her belly and perform upon her a invasive surgical procedure because as we all know, disabled women are no better than kittens"

YES.

EthylBenzene said...

I've been following this story from Trin's LJ page, over to here, to Feminste (urgh....I promised myself I wouldn't go back there....), over at Ren's, you know...sort of all over. And I just want to say something. I am not disabled, I am not a relative or caregiver or a friend of a friend (except insofar as I've had interactions with PWD over the interwebs). I was very disturbed over the Ashley thing a year or so ago, and I'm equally disturbed now.

At first I wasn't sure where I came down, and I read lots of good and bad arguments from all kinds of directions on this. And I still wasn't sure, you know? Because I didn't really have any experience with disability issues, and if you're not "up" on the issues, it's hard to tell who's got a good argument and who just has a lot of pretty words.

But then I was thinking, about how we get so mad over at SM Feminists when people claim they know what we're thinking and feeling better than we do. And you know what that made me realize? It doesn't matter what I think, or what I think I would do in this situation, or whatever. What matters is what people with disabilties have to say. You guys are the ones we should listen to.

So I did. I read, and I listened, and I am not shy to say I am convinced that this whole situation is fucking evil, and that people who argue that it's ok for ANY reason have their heads up their asses. I didn't know much about anything involved in the situation, so I ~listened~ to people who DID.

I hope this doesn't come across as offensive, but I just want people who think they've got it all figured out to maybe take a step back and wonder whether they need a new perspective.

R. Mildred said...

Oh and prosehack, please understand that I know you really didn't mean to say what you said, and I'm not angry at you, it's just as soon as I heard of this thing, I knew exactly waht arguement points were going to be put forth by the bad folks out that, and beleive me, if those people and their 5 or six incredibly repetitive points nad htier repetitive and angrifying refusal to even listen to alternative points of view on the issue did not exist I would not have gone off at you.

please remember your password and keep commenting, you're a good commenter who's comments I enjoy reading.

it's just that while we need everyone we can get, we don't need every step forward to be impeded by the bodies of those we're supposedly fighting for.

and I'm getting tired of it, but it's not really you, it's them (not the giant ants) the bastard vinegary flap sacks out there with the same five arguements they repeat ad nauseum.

Trinity said...

"about how we get so mad over at SM Feminists when people claim they know what we're thinking and feeling better than we do."

YES.

Have you seen blogs like Ballastexistenz, that are actually written by people who are severely and obviously disabled? While they're not Ashley or Katie, reading stories like theirs means seeing a whole lot of assumptions about whether people "can think" or "are aware" that severely underestimate people.

(see this video for one example. watch the whole thing, or you won't get the point. it's a bit long but it's really good.)

Trinity said...

Crackerlilo:

"Does anyone ever suggest neutering a severely disabled boy like a dog or cat to make him easier to care for? I've never heard of it."

Yes.

Vanessa said...

Holy shit, Trinity, that video was amazing.

andi said...

Prosehack:

"I know in Florida we had a severely disabled woman who did become pregnant, and the resulting furor over her having an abortion was something I would never want my child to be at the center of--aware of her surroundings or not."

and the solution for this is to do even more than sterilize them? Taking not only uterus, but fallopian tubes, ovaries, and cervix?
Seriously. Start screening the attendants better, have more of them and have all intimate care done in pairs or more. You go through more background checks to work as a cashier at RiteAide than you do at most longterm care facilities.

EthylBenzene said...

Trin,
"Have you seen blogs like Ballastexistenz, that are actually written by people who are severely and obviously disabled?"

Yep, I've been following links like crazy trying to get myself educated on this whole situation. I'm so astounded at some of the attitudes I see around. My conciousness has DEFINITELY been raised.

Trinity said...

ethylbenzene:

"Yep, I've been following links like crazy trying to get myself educated on this whole situation. I'm so astounded at some of the attitudes I see around. My conciousness has DEFINITELY been raised."

Great.

I'm less concerned about people agreeing with me (though I think I'm right, I do realize these issues are complicated -- yes, there is a caregiver crisis, and yes, it means often parents are stuck with the great difficulty of doing the care work themselves) as I am with people learning more about the history of things like this.

It's a lot harder to see where disability rights advocates are coming from when you're, say thinking of rabid pro-lifers rather than thinking about the harrowing history of eugenics movements or about the way people who communicate differently are often assumed not to communicate at all.

Trinity said...

Vanessa,

Isn't it? Amanda is totally amazing.

CrackerLilo said...

Thank you, Trinity. Of course that isn't right, either.

Trinity said...

crackerlilo: yw :)

Anonymous said...

Prose again.

To make sure I'm understanding your post, RMildred: "fuck you" and not in a nice, we disagree way. Oh, but I'm not mad at you? Oh, and thanks for stopping by?

Well, right back atcha "sister."

Now to make sure you're understanding my post: What I SAID was, some people say that. I even went on to say that I WASN'T comparing this woman to an animal.

I said NOTHING about disabled folk, I said NOTHING about women, I said NOTHING about ANYTHING other than "some people say animals are sentient and thus deserve rights." Those are my words, and anything else--you and your filters added in. I did not say that I believed that--notice that?

And the rest of you who are obviously such careful readers, you may join in the fuck-you love fest: I said that a parent of such a child had put forth an argument that made some sense--as opposed to the "I don't want to deal with her period" crap this woman was using. I said that there was an actual case where pregnancy had happened. And I also noted a website I'd seen that was "on the other extreme." (And you "say" you want to educate yourself about the issue.) Where in there do you read any sort of value statement attached to those reporting of facts? So now I'm in the company of Hitler, et al. (Oh, and congrats on blowing Godwin's law out of the water: "As a thread grows longer, the probability of a comparison involving Nazis or Hitler approaches one." You pretty much smacked it out of the park straightaway.)

Anyone still on their soapbox? Then let's review some more of the post, the part where I say "I abhor the impingement on someone's basic human rights..." Well, yeah, that sure sounds like I consider disabled women inferior, that I'm comparing them to kittens. (You want me to really piss you off? How about if I admit that most non-human animals are actually SUPERIOR to most human animals I've ever met?)

And EXCUSE ME for admitting that I'm torn because I know (first hand) what kind of abuse can and does happen in institutionalized settings, and I also know how it feels not to be able to protect someone you love from harm. How dare I feel safe enough to admit any difficulty in sussing out the morals and sides? I guess that a feminist space is no place to admit any hesitation to join lock-step in the group's thinking, or express any consideration of another point of view. I should have known that, as I'm a former reader of some of the more radical blogs--ones where several of the women posting here were treated much the same way: misreading, personal attacks, and all. Yeah, women are people too, and should be treated with respect. Oh, except women you (perceive as) disagreeing with you. Hey: women who are unable to read--are they people too? (The answer is yes, but to use a distasteful word, they're STUPID people.)

I did perhaps err in not making that last paragraph "breezy" enough or being obvious and putting the stupid /snark icon. I think I overestimated the women in here's ability to read sarcasm and off-handedness better than (obviously) they did. And, as with my students, since enough of you did it, the error probably was with me--well, unless you all are just sycophants who fall in line with whatever RMildred says...

As far as institutionalized care goes: Screen people better? You are naive. There are always situations where helpless individuals are subject to sexual attack, and no place are they more vulnerable than a group setting. If not staff, then other patients at the facility. You gonna "screen" them, too?

Just for the record,to completely "go off" on someone, and then a few later to post a conciliatory softening post? It might be a favorite rhetorical mode on these blogs, but I'm calling it for what it is: passive aggressive BULLSHIT.

So thank you, all, so very much for the sarcasm, the attacks, the summation of my character. I was pleased to be your whipping boi; hopefully you got some of your vitriol out here in cyberworld before you went and kicked a kitten or something. (Oh, but it's not like it'd be a big deal if you had.) So you got your little feminist manifesto published, and I'm sure it felt good to see it up there on the screen.

Now, a final question: What is wrong with you people? Are you that bored that you need to GENERATE something to be outraged over? Here, do something constructive: find out about Heart's finances as a presidential candidate. Who's giving her money, how much, and how's she spending it? Federal law says that's supposed to be public information. I've emailed the Freesoil party, her campaign manager, and her about it, and haven't gotten any response from anyone. How many people are going to have to drink her Koolaid before someone stops her?

I think perhaps it's best the password stays forgotten, don't you?

R. Mildred said...

So you got your little feminist manifesto published, and I'm sure it felt good to see it up there on the screen.

Oh, you're just some random MRA troll/Apostate, and not actually prosehack.

Apologese to the actual one, whereever he is. Sorry for the misunderstanding.

Trinity said...

"How about if I admit that most non-human animals are actually SUPERIOR to most human animals I've ever met?"

Doesn't piss me off at all. Just makes me wonder on what scale you're measuring superiority, there.

Trinity said...

Also: why would it be the case that people need to manufacture outrage over someone removing someone else's body parts? I'm totally confused as to why I shouldn't care about this, or why my caring about this reveals that I'm invested in an ideology.

belledame222 said...

okay, wtf is going on? you know, this morning I had to clean up my own bile as well as the cat's; not really appreciating having to do it in here too. well third time's the charm i guess.

Anonymous said...

One last time.

Very nice. Now it's the dismissive tone.

Your post was not for anyone's benefit but your own. You simply enjoyed seeing your words up on the screen.It was redundant, pedantic, and boring. Hence, the manifesto label. I just don't appreciate being lectured in feminism by someone who, it seems, wishes to engage in a bad-faith reading of my post.

And Trinity, dear, to spell it out for you: the outrage manufactured was over the MISREADING, not over the act itself. As for the scale on which I measure it: animals aren't intentionally cruel, smugly superior, nor stupidly dismissive to others.

I'm not a troll, not an MRA, not even male.

And no longer a reader.

Pat yourselves on the back everyone--you have assimilated heart and other's tactics to quash discussion very well.

belledame222 said...

Okay, you know what? R Mildred owns her own words. I own mine. Maybe I should have stepped in here earlier, but on the other hand, prosehack, that little tantrum doesn't exactly behoove me to go chasing after you, never even mind the subject matter at this point.

Yeah, people feel -really really strongly- about this. For good reason. That is somewhat separate from launching personal attacks and "fuck you" and shit, yes. On the other hand, you know, I'm not always on top of shit, particularly when I'm fucking -ill.-

Glad you got that out of your system, though. As for the comparison to Heart: it's about on a par with calling you an MRA, I suppose. If I'd been her, I'd have shut this shit down long ago, I expect. What can I tell you. So long, farewell, don't let the door hit you, and that goes for pretty much anyone who gets this bent out of shape over a single flamewar with a -commenter.-

Daisy said...

The Apostate, I've got some bad news for you: Ayn Rand called from purgatory, and wants her shtick back.

Maddie H said...

While reading ballastexistenz I came across a link to this article:

Forwarded on behalf of Linda Edwards

From, the article:

My life story is the reverse of Ashley’s. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat 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.

Also, I saw this bit:

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.

That line, about support, is often used in reference to parents who murder their disabled children. All too often, it's used to soften the severity of the parents' actions when they feel they have to take drastic measures.

I agree with the point there, but that particular phrase makes me flinch whenever I see it. I realize it's from FRIDA and not here, though.

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