disabilities

I saw this story yesterday and just thought it was truly creepy.

The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.

That is just totally messed up -- the foot binding of Western medicine.

Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."

Doesn't that sound a bit fetishistic to you? Pillow angel? Sure, parents have pet names for their children, but here it refers to a condition created by their surgical intervention.

I'm sorry, but I have to disagree with Amanda. Messing with a kid's health and disabling growth, all for the convenience of the parents, strikes me as truly wrong.

In terms of disability rights activism, the compelling case for it is the idea that having a disability doesn’t mean that your life isn’t worth living and therefore you should be accomodated and given as many opportunities as anyone else for the joys of life that other people who are considered more able-bodied have. With that in mind, I think it’s quite possible the parents of this girl are living up to that standard, if in a way that’s startlingly out of the norm. They’ve identified their daughter’s needs and pleasures—basically, those of an infant—and are looking for ways to fight social structures and even biology that would erode their daughter’s ability to have those things. It’s weird, but it makes sense.

It doesn't make sense to me. If there were a compelling health-related reason for such surgical measures, it might make sense. That can be a gray area for those hard-to-diagnose cases, but here it truly sounds like they're doing this for their own convenience -- after all, it's probably much easier to manage a smaller mentally disabled child.

The BBC carries more details:

Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.

"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.

The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.

The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.

I'm left wondering why they didn't throw in a clitoridectomy, you know, for her own good.

Melinda on BlogHer writes:

The first red flag, for me, is the repeated insistence that their child brings unlimited joy and is nothing less than a blessing. This seems over-the-top to me, given that she requires life-long care and attention.

--Not to mention radical surgery and medical treatment to stunt her growth.

Another red flag is this business about calling her a "pillow angel", which, again, strikes me as making the child overly-sacred, pure, and innocent. Why is this so bad? Because it makes the girl less human and complex, and more of a cutout cartoon figure. This removes her human-ness.

It seems like Ashley became less human when her growth was stunted in order to make her more manageable.

In the Guardian (hat tip to Koan in BlogHer comments, we can read how Ashley's father tries to justify their decision, revealing something else I found disturbing:

We scheduled time with Dr Daniel F Gunther, associate professor of paediatrics in endocrinology at Seattle's Children's Hospital, and discussed our options. We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects.

No negative or long-term side effects? Are we so sure? I'd like to see a survey of incidence of breast cancer, uterine cancer and ovarian cancer of those women. Sometimes the arrogance and hubris -- and paternalistic chauvinism -- of the medical profession truly shocks me.

The fact that there is experience with administering high-dose oestrogen to limit height in teenage girls gave us the peace of mind that it was safe - no surprise side effects. Furthermore, people found justification in applying this treatment for cosmetic reasons, while we were seeking a much more important purpose.

Convenience?

On Sour Duck, Melinda links to several other posts on this.