6.08.2007

reconsidering ashley

A few weeks ago, I blogged about the medical abuse by her parents of a girl known as "Ashley X". Kids On Wheels, the magazine I help write and edit, ran a letter in response to their article on those parents' choice. I'm posting the outstanding letter with permission of the author.
I love your magazine, but I was frankly appalled when I read "Considering Ashley" (Wheel Life, Winter 2007). For all of us to have to worry that ethics committees and families might consider mutilating a little girl, and subjecting her to experimental hormone injections as a preferable alternative to institutionalizing or even euthanizing her, is so far off the charts that I am left speechless. Ashley is not the problem. The problem is that all the Ashleys and their beleaguered families don't have the supports they need.

We would never be having this discussion if Ashley had been a boy, and the parents had cut off his penis and testicles. Nor would we be having this discussion if Ashley did not have a disability. Ashley's parents said they wanted to spare her from the discomfort of large breasts and the potential for breast cancer, so they cut out her breast buds. Yet, both her mother and her sister still have their breasts. How did the parent's access the crystal ball that assured them that if she was allowed to become a woman she would absolutely have painful large breasts and a high risk for breast cancer?

Removing Ashley's uterus was rationalized by saying the goal was prevention of menstruation and menstrual cramps and potential pregnancy. If, as they stated, no one is allowed to care for Ashley but her parents and grandmothers, how would she ever be subject to becoming pregnant, assuming she was even physically able to become pregnant in the first place? Why is the concern for pregnancy, not for the potential of being sexually abused? How is that being prevented? Because if sexual abuse is being prevented, then so is any potential for pregnancy. And there are definitely medically approved ways to prevent menstruation without removing body parts.

And now that Ashley's parents have been able to create this designer "pillow angel," who will hold them accountable to their stated rationale of caring for Ashley for the rest of her life? The answer is no one, because whether or not her parents had sought the "Ashley treatment," there is never a guarantee about what the future holds. Life happens. Her parents could die or become disabled, or just get tired, or something else unexpected could happen, and they might have to consider alternative living arrangements for Ashley. And make no mistake, those alternative arrangements would in no way be limited to an institution! Stating that an institution or euthanasia are the alternatives to surgery and hormones is patently false, and a great disservice to all the families and service providers that care for children and adults with the most significant disabilities in their own homes and communities every day. Even at this tender age, Ashley could be cared for by another family in that family's home, if her parents were unable or unavailable to care for her.

I am further dismayed that Ashley's parents have had no trouble "showing and telling" every intimate detail about her on their website, but they have chosen to protect the privacy and confidentiality of themselves and their other children by blacking out their faces in the pictures. Why are they allowed that dignity and respect for privacy, yet Ashley is not? Why is it OK to display Ashley and tell the world what they did to her? Is it OK because, after all, Ashley has a disability, and she'll never know? Does anyone else not see the double standard here? Does anyone else not see what's wrong with this picture?

Thanks for KIDS ON WHEELS. Our youth definitely need to develop a sense of community at the earliest possible age. Their very survival depends on it!

Marsha Katz
ADAPT Montana

Thank you, Marsha Katz. I'm ashamed that I didn't even think of the sexism and misogyny inherent in Ashley's abuse.

I appreciate Katz's clear indictment, and I appreciate her anger.

12 comments:

James said...

One minor point about the sentence "We would never be having this discussion if Ashley had been a boy, and the parents had cut off his penis and testicles": the male equivalent surgery to the hysterectomy would probably have been a vascectomy, rather than having the doctors "cut off his penis and testicles" -- and if that's what had happened, I suspect it probably would have garnered about as much attention as the hysterectomy did. So I'm not so sure that that's a sign of sexism in this case.

On the other hand, the whole notion of the "perfect innocent little angel" who needs to be saved from the corruption of adult life is very sexist, and is very much in play here.

redsock said...

Ashley's parents said they wanted to spare her from the discomfort of large breasts and the potential for breast cancer, so they cut out her breast buds. Yet, both her mother and her sister still have their breasts.

How brave and inspirational of Mom to keep her breasts and risk getting cancer!

L-girl said...

the male equivalent surgery to the hysterectomy would probably have been a vascectomy, rather than having the doctors "cut off his penis and testicles" -- and if that's what had happened, I suspect it probably would have garnered about as much attention as the hysterectomy did.

I see your point, but...

The equivalent of vasectomy is tubal ligation, a much easier and safer surgery than hysterectomy. I'd love to hear the dr's excuse (if I could stomach it) for removing the girl's entire uterus and ovaries.

I doubt doctors would perform a vasectomy on a minor-age male. If they wanted to prevent the onset of puberty, they would more likely use some form of so-called "chemical castration".

I agree that doctors probably would not remove a boy's penis, but the testicles of developmentally disabled (once called mentally retarded) adults have been removed in many hideous cases. (Although none I know of recently.) I do think, had that happened, there'd be more of an uproar than there was over this case, but of course there's no way to prove that.

You're absolutely right that the nauseating "pillow angel" theme would most likely not be applied to a boy.

L-girl said...

How brave and inspirational of Mom to keep her breasts and risk getting cancer!

Heh.

James said...

The equivalent of vasectomy is tubal ligation, a much easier and safer surgery than hysterectomy. I'd love to hear the dr's excuse (if I could stomach it) for removing the girl's entire uterus and ovaries.

Good point.

I doubt doctors would perform a vasectomy on a minor-age male. If they wanted to prevent the onset of puberty, they would more likely use some form of so-called "chemical castration".

Of course, the full physical process used to be performed on boys to preserve their singing voices (the last castrato I could find a reference for died in 1922).

I do think, had that happened, there'd be more of an uproar than there was over this case, but of course there's no way to prove that.

I'm not so sure, simply because I suspect people's discomfort with developmentally disabled people would override the indignation over castration. Which isn't saying anything very positive about those people, of course.

L-girl said...

I'm not so sure, simply because I suspect people's discomfort with developmentally disabled people would override the indignation over castration.

Ack, you're probably right.

I once saw an excellent "60 Minutes" piece on a married couple, both developmentally disabled, living on their own in an apartment, both gainfully employed - and their struggle to be allowed to keep and raise their own child.

The state had taken the child, put it in foster care, and was seeking to place it for permanent adoption - with both parents alive and well and fully able to care for the baby.

I was horrified, and very angry. (This was a long time ago, before I wrote about disability issues.) I remember a friend of mine saying, "I don't know, when people like that have children, you just get more people like that, and it never ends..."

I can still hear her voice in my mind.

impudent strumpet said...

This is far from everything I have to say about this issue and I've already blogged about it a lot. I just wanted to address this one point because I've seen it brought up many times in many places and no one seems to pay attention to the obvious answer.

If, as they stated, no one is allowed to care for Ashley but her parents and grandmothers, how would she ever be subject to becoming pregnant?

I'd imagine this is because Ashley is expected to outlive her parents, or at least to outlive their ability to care for her, and therefore will eventually need other caregivers. According to the "first google result" school of research, average age at first birth in the US is 25, average age of menopause is 51, and average life expectancy is 77. This would have Ashley's parents 76 years old by the time she is no longer able to become pregnant. Regardless of what you think about the plans themselves, it's certainly reasonable for the parents to base their long-term plans on the assumption that they won't be able to care for Ashley right up to one year before their own deaths without outside help.

L-girl said...

Regardless of what you think about the plans themselves, it's certainly reasonable for the parents to base their long-term plans on the assumption that they won't be able to care for Ashley right up to one year before their own deaths without outside help.

Of course. It's more than reasonable - it's necessary. However, any responsible caregiver would prevent Ashley from becoming pregnant.

Anonymous said...

However, any responsible caregiver would prevent Ashley from becoming pregnant.

Agreed, and that can be done using far less invasive methods.

My feeling is that they wanted a kyoot wittle bay-bee for all time. And yes, it does have a great deal to do with gender and it's nauseating. The doctors who agreed to chop her up the way they did should have their licenses pulled.

Thank gaia that I'm never going to have children and am thus spared the possibility of situations like this one.

Anonymous said...

If you can stomach it, read the entire PDF from their website about the "Ashley Treatment." It will make your blood boil. Yes, a lot of it is about gender. Here is a direct quote:

"We learned that attenuating growth is feasible through high-dose estrogen therapy. This treatment was performed on teenage girls starting in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

So the idea for this came from something bordering on footbinding or female genital mutilation?!?

Oh. My. God. But Wait, There's More! Removing her breast buds is a good idea because . . . wait for it . . .

"Large breasts could 'sexualize' Ashley towards her caregiver, especially when they are touched while she is being moved or handled."

Oh, and I get bigtime fundie vibes off of these people.

As for her becoming pregnant, I do not support the wholesale sterilization of disabled people. Given Ashley's condition, however, any sex with her would be rape. While I do not support the hysterectomy, I would support getting her on some kind of long-term, goof-proof birth control when she's old enough.

L-girl said...

It's really horrendous. You're right, it exudes sexism.

As far as I know, they are not overly religious.

L-girl said...

Given Ashley's condition, however, any sex with her would be rape. While I do not support the hysterectomy, I would support getting her on some kind of long-term, goof-proof birth control when she's old enough.

That's why the hysterectomy-as-contraception argument is such bullshit. There are so many less invasive ways to handle that.