I hesitated a lot before finally deciding to post this because it feels kind of strange to blog about this subject. Actually, I find the whole blogging thing rather strange in general but I guess that is another story entirely. Blogging about the “Ashley Treatment” however seems even more bizarre because in a way, it feels like such a private matter. But of course, it stopped being a private matter a while ago and considering how important it is, I thought I would share my thoughts.
I imagine that by now most people are aware of the case of Ashley, a nine-year-old Seattle girl with significant physical and cognitive disabilities who underwent some rather unusual medical treatments that have merited her the nickname of “frozen girl”. High doses of estrogen, a hysterectomy and breast buds removal effectively freeze her in time in order to stunt her growth and to desexualise her (I specifically use the word “desexualise” as this goes far beyond sterilisation).
After her doctors published the story in a medical journal in October 2006, it caused quite a stir and in an effort to clear up any misconceptions as to their motives, Ashley’s parents set up a blog wherein they offer information about what procedures and treatments were administered to their “pillow angel” and their reasons for not only consenting to this course of action but, if I understand correctly, of actually being the instigators. Basically, they explain that they wanted their daughter to be more comfortable, they wished to make it easier to include her in social activities as well as prevent stigmatisation regarding the types of activities she would be likely to enjoy despite her real age. They add that they hoped to possibly prevent any future sexual abuse, potential unwanted pregnancy and even cancer and they deny that they were especially interested in making their own lives a little easier.
I like to think that I have an open mind with regards to medical exploration; I totally see the value in scientific advancements and gawd knows I have, in my young hopeful years, reluctantly accepted guinea pig status on occasion in the hopes of gaining more mobility. But I have to admit; this story startled me and the more I thought about it, the more uncomfortable I became.
I will say up front that I do not question that Ashley’s parents really believed they were doing what they felt was best for their daughter. It certainly is not easy being the parent of a child with an important medical condition and/or significant disability. I know that my own parents struggled with this for at least 17 years and I imagine that on some level, they will always worry about some of the choices they had to or failed to or did not get a chance to make when I was a child. Of course in those days, access to information was not what it is today, the very few advocacy or support groups we had here were in their infancy and patient’s rights was a foreign concept to many doctors. At the time, the 70s and 80’s, it was next to impossible to question doctors’ decisions and even when my parents started wising up, realising that a lot of the professionals they were dealing with were almost as clueless as they were, no one made it easy for them. So I certainly sympathise with families who are just trying to do their best by those they care for.
A lot has already been said about this story. Many [for the most part] rational arguments have been offered to question the reasons that Ashley’s parents have stated (for a thorough overview, see articles and related links over at The Gimp Parade) and I think that one of the most important points that has been made relates to the value of ensuring adequate support to families. So I will not get into the details of this case; others have done a much better job than I could in that regard.
But I must admit to a general malaise that has dogged me ever since I first read about this whole thing. I still find that I have difficulty articulating my feelings about it but I guess that as a person with a life-long disability and as a woman, it touches me perhaps a bit more personally. I mean, I imagine most people would think or feel something about it, some more strongly than others, but for me, it brings to the surface an uncomfortable truth that few are really willing to openly address when it comes to disability. I think that at the core, it speaks volumes about the value society affords to the bodies of persons with disabilities.
It is an obvious fact (though still worth mentioning) that if this child had not been disabled, particularly with regards to her cognitive limitations, this would not have happened or been condoned by the medical establishment. And as an aside, I have to wonder if the same considerations would have applied if Ashley had been a little boy. Would we seriously consider removing his prostate and testicles and whatever else can pose a risk for cancer or sexual abuse or discomfort in males ? Would we accept bombarding him with hormones in order to stunt his growth so that his caregivers can have an easier time at handling him ? It is hard to say but I imagine that this development will probably have us facing that proposal sooner than we think.
I guess I might understand these decisions a bit more if Ashley had been in considerable pain somehow, pain that these procedures could significantly alleviate. But no indication has been given that she was in pain. It has been well established that these treatments were administered to cancel out any potential downside to natural corporeal manifestations that have not even occurred yet and that, the discomfort of genetically foretold big breasts aside, indicate no certainty of pain or threat to life or well-being.
I mean, as women, disabled or not, many of us are at risk of being abused (and it is true that women with disabilities are generally more vulnerable to abuse). Many of us deplore our breasts for some health-related or fucked-up reason or other. Many of us, at some point or other in the course of our lives, are usually, to varying degrees, uncomfortable once a month. And I guess most of us probably hope that something can make our lives a bit easier. But I doubt most of us would consent to having physical characteristics that define us as women winked out of existence in order to avoid something that may happen some time down the road. I think that a lot of us would prefer to cross that bridge if and when we got to it. In Ashley’s case however, not only have all the bridges been burned down years ahead of time but all the roads have been destroyed as well. Indeed, her fate has been sealed with such finality.
I am aware that Ashley’s cognitive limitations mean that she is probably not conscious of any of this, that she does not understand what was done to her and what it means for her, let alone others. In all probability, she does not have the capacity to care about such things. Perhaps this makes it easier for some to stomach how profoundly this little girl has been altered but does that make it ok ? Does it allow objectifying a human being in this manner ?
Because when I first heard about all of this, I had a disturbing thought: that Ashley had moved a bit farther away from being a “she” and a little closer to being an “it”. Some would say this is hardly unheard of. In many cultures, people still have a really hard time with something as simple as saying the word “person” in the same sentence as “disability”. For a lot of unenlightened people, persons with disabilities are objects. Objects of pity, admiration, disgust, etc. Things to be singled out or ignored, to be looked after or neglected. Feared or beatified. Monsters and angels (pillows not always included).
Only time will tell what the impact of the “Ashley Treatment” will be but I have an uneasy feeling that this is only the beginning. And that scares the hell out of me.