Ashley is a nine-year-old girl with severe cognitive and physical disabilities. She has extensive brain trauma that prevents her from sitting up, speaking, or otherwise having any significant interaction with her environment. She is also the subject of intense debate in the bioethics and disability communities because of her parents’ decision to halt Ashley’s physical development through surgical and pharmaceutical interventions. Ashley has undergone a hysterectomy, removal of developing breast buds, and hormonal treatments to freeze her growth. On a blog created by her parents to describe their life with Ashley, they insist that they permitted these treatments with only Ashley’s comfort and happiness in mind. They claim she will have fewer bed sores and that her lighter body size will make it easier for them to take her out of the house.
First of all, I have no doubt that Ashley’s parents are motivated by a sincere desire to do what they think is best for their daughter. And, from a certain point of view, I can understand their reasoning. As someone who is naturally undersized, I won’t deny that my stature offers certain advantages in terms of getting around. But the notion of surgically and chemically altering someone without her consent fills me with deep-seated misgivings. As Wheelchair Dancer points out, it seems that Ashley is being modified to accommodate her environment rather than vice versa. Wouldn’t an adequate staff of caregivers, along with appropriate assistive technology, greatly ameliorate the health and mobility concerns that apparently prompted this decision? Whose convenience and comfort really is at stake here?
I can’t also help but think that forces of gender discrimination are at play here as well. Let”s suppose that my parents had wanted to have me castrated because I was never going to have an intimate relationship with a woman and they wanted to spare me the occasional discomfort of unfulfilled sexual arousal. I’m not so sure they could find a physician willing to go along with this. Yet the decision to remove Ashley’s uterus and breasts is somehow more acceptable because these attributes of female anatomy are considered burdensome.
I sympathize with the parents’ efforts to improve their daughter’s quality of life, but the invasiveness of their methods leaves a bad taste in my mouth. People with disabilities don’t deserve to have their bodies treated as organic clumps of Play-Do that can be shaped and modified as others see fit. Even the most impaired of us should be afforded some basic autonomy over ourselves.
Oh, I’m going to be sorry I got myself into this argument. But…
“Wouldn’t an adequate staff of caregivers, along with appropriate assistive technology, greatly ameliorate the health and mobility concerns that apparently prompted this decision?”
Perhaps, but all of that costs tons and tons and tons of money, and insurance probably won’t pay for everything needed. And that’s kind of an “in an ideal world” scenario. In real life, well, that may not be available to the X parents.
Its what is known as the thin edge of the wedge – let this one pass into accepted treatment of people with disabilities, and it may open the flood gates that would threaten to swamp all us crips.
Thats the first, self-orientated, reaction.
Then the howl of NO NO NO I feel on behalf of the child now and as it matures (strick out ‘grows’).
Then the recognition that, yes, its expensive.
But finally, ultimately, it is taking away the choice of the person with the impairments.
So, an accommodation of that young person’s right to have a say in its future – yes, the decision now to stunt the physical growth has been granted to the parents, but what would have been their choice if they had been granted that right only if that had come with the legally enforceable right of the child in the future, its own futgure, to be able to take legal action on the parents’s decision, if it so decides, with the right to receive compensation if the courts agreed, and for the child to have informed independent legal advocacy throughout its childhood to enable it to make a supported choice whether or not to do that in the future.
Oh Brave New World !