For those of you who missed the story of Ashley X and her “revolutionary” new treatment to make her disabled life better, Ill give you a quick run down.
Ashley is a nine year old girl, whose parents decided to remove her uterus and breast buds, as well as giving her extreme hormone therapy to keep her small and portable.
No, really. That isnt a joke.
The parents’ site is here, and goes into much more detail of their rationalizations and the whats and whys.
Their main argument, and really, I cant fault their reasoning, is that these procedures will make Ashley’s quality of life better – by keeping her small, she can be more easily moved and can therefore stay at home and participate in family activities. I can see that the family just wants what is best for her. I can. Truely, I can.
But I find this whole idea horrific.
Removal of the uterus was done to prevent her from having a period, which would be difficult to keep her clean during.
Ok, I can see that. Ive worked with severely disabled teenage girls, and, trust me, them having their period was no picnic.
Removal of the breast buds was done to make her more comfortable, as the family is prone to large breasts. Breasts would make the chest straps on her bathing chair and her stroller much more difficult to fasten, and would rub uncomfortably on Ashley. The other reason is to reduce her sexual appeal, so her caregivers wont sexually abuse her.
Ok, sure. I can get that. All of it.
But, then, there come all of the other thoughts. On one hand, as a SpEd teacher, I know how difficult it is sometimes to work and care for kids OR adults with severe/profound issues. One the other hand, WHAT THE FUCK?!
My main, main concern is this whole mess is choice.
Supposedly, Ashley has the mentality of a 3 month old, and cannot roll over, walk, talk, or hold a toy.
Prove it.
Not the lack of physical ability, but show me that she is mentally three months old.
You know what? You cant.
Why?
Because Ashley is completely nonverbal, and has no way to communicate. Without the ability to comminicate, how can we have any idea what her level of cognitive processing is? How do you evaluate it?
As far as I know (and I know there is much I dont know), you cant.
Ashley might have a lot more going on upstairs then we know about. If you look at the pictures of her on her parents’ site, she smiles, she makes some eye contact, she interacts. Her parents say she loves music and has a favorite musician. She likes watching tv.
My other issues have alot to do with the extremes gone to by the parents/doctors in the “Ashley Treatment.”
Removal of the uterus to prevent menustration?
Arent there medications that can do that? Maybe the implanted birth control? If its a birth control concern (and it might be, there is an article I cant find about a woman being sexually assaulted while in a coma/vegitative state, and her family being denied an abortion. Will look for it. ETA: Found it, check bottom of post) Why such an invasive procedure?
Why full removal of her breasts? Wouldnt the addition of all those hormones slow her breast growth anyway?
Why the extreme hormones? Do we even know what effect that might have on her later in life? Her parents state that they chose the hormones as they have been used since the 1970’s to prevent very tall girls from topping 6feet and limiting their marriage prospects, so they knew it was safe. Um..Im not even sure which direction to approach that one from.
Mostly though, they desire to keep Ashley a child (and yes, that is exactly what they are doing) is because:
Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
Why is it more dignified? Why is it more “right” for her to be 40 and the size and shape of a child, than it is for her to be a 40 year old in the body of a woman?
Other people have said things much better than I can, and with much more perspective than i. Have some links. I encourage you to check them out.
Disability/Sexuality and Ashley
Did I miss something?, on medical ethics and disabilities
WIMN’s Voices examines the problem of disability and choice
Gender and disability brings up some very good points, including whether this would have been acceptable to the medical community (or even thought of by the parents) if Ashley had been male.
There are many more links that I am still working my way through, so if you come across more, pass them my way.
Any thoughts on this are also welcome.
Side note: For an interesting look at autism and someone who was misdiagnosed as severely retarded, check out Autism is a World
ETA: The article I was looking for, about the disabled woman being denied an abortion is here. I was wrong, she wasnt in a coma, but she does have seizures, CP and autism. Oh, and the mental abilities of a one year old. Thanks, Jeb Bush!
Has anyone heard of a resolution on this one?