Sliding down the slippery slope

Normally I enjoy nothing more than a good, rousing bout of judging. I put on my oversized judgment cap– it’s fur-lined!– and I recline in my judging chair, which has this swivelly headrest so I can shake my head in disgust for hours without suffering from neck strain, and– wait, where was I?
Judging! Right! As I was saying, I relish the chance to hold forth on what everyone who is not me should be doing with their lives; but when the topic is the well-being of a child, and when I’m about to discuss said child in a public forum, and invite others to join me in the judge-fest, I start to feel a little queasy. Which is why it’s been so hard for me to write this week’s column. Because I’m talking about Ashley.
In case you haven’t read about her elsewhere, Ashley is a severely impaired nine-year-old girl. Diagnosed with static encephalopathy, she will never progress mentally past the age of three months. And now, due to the efforts of her parents and the team of specialists they employed, she will physically remain a nine-year-old for the rest of her life.
Her parents, with the full agreement and cooperation of Children’s Hospital and Regional Medical Center in Seattle, authorized Ashley’s physicians to surgically and hormonally stunt Ashley’s development. She underwent a hysterectomy, breast-bud removal, and estrogen treatments to halt her growth.
This series of procedures, which they dubbed the “Ashley Treatment,” was performed, as the parents argue on their site, solely for the child’s benefit. Keeping her small will allow her parents to hold and comfort her, and bring her with them wherever they go. It will also lessen the risk of bedsores and associated infections. The hysterectomy eliminates the future discomfort of menstruation; the removal of her breasts will sidestep any problems she might have with large breasts, which apparently run in her family.
They call her their “pillow angel,” and when I first heard that I hopped right into my judging chair. (It’s actually sort of a judging chaise longue. But I digress.) I cringed when I first read it. I cringed more when I read, “We call her our ‘Pillow Angel’ since she is so sweet and stays right where we place her– usually on a pillow.” And I find it unnerving that Ashley’s picture is trotted out before the media, whereas the privacy of the rest of her family is respected, with their faces blacked out in group photos.
And most of all, I cringed when I read how they altered her. I get that they did this solely for her own comfort and accessibility, but I’m not sure that I’m comfortable with their reasoning. Using the same logic that she should remain as small and as portable as possible, you could argue a case for removing any non-vital body part on someone this disabled. The removal of her breasts, they said, was partly to protect her from potential sexual abuse. It’s true (and horrifying) that sexual abuse of the disabled happens all too often. But does breast removal protect her? Little girls are fetishized, too. And anyway, does this kind of abuse have anything to do with sexual appeal?
Then again, if I were in their position, I would do everything in my power to help my child be as comfortable and happy as she could be. Anyone who has a three-month-old will tell you that all they want is to be held. These parents want to care for Ashley and comfort her in the manner any three-month-old needs and demands. Is that wrong? And calling her a “pillow angel” doesn’t mean they don’t have all the love in the world for her; it’s just (to me) an unfortunate choice of words.
And then I think, who am I to say? I’m not disabled; I don’t live with someone who is disabled. So I hunted the blogosphere to find out what people with disabilities, and those who love them, had to say.
At Fit of Pique, Thirza argues that a disabled adult is not equivalent to a child, no matter how low the IQ: ” I have been as close as you can be to someone with an IQ of 23 for 28 years, and I know that she is completely and fully human, like all of us. She has feelings, she has memories, she has preferences around movies and clothes and foods. She even has crushes. She went through a horror movie phase when she was fifteen like any other teenager”
“One thing Ashley had in her life that was like the rest of us was the ability to grow up into a physically adult woman’s body. And now she doesn’t even have that. And people are celebrating, even though it’s given her an entire new layer of disability to deal with.”
Over at The Gimp Parade, Blue points out that Ashley may develop beyond the doctors’ estimations: “the medical experts may have done what so very frequently happens to disabled people and discounted [her] far too early. This discounting and underestimating the medical community does is a key aspect of the institutional and societal discrimination disabled people face every day.”
And on Did I Miss Something?, I’mfunnytoo discusses her fear that the “Ashley Treatment” is leading us toward more ethically questionable procedures: “None of the sympathy given the parents does *anything* to assure me that when the *physician led ethics committee* agreed to this, that there was any kind of discussion of “this far, but no farther.” … I didn’t hear: “We, the educated medics, would *never* consider this kind of involuntary bodily mutilation for a person say who was *just as physically disabled and difficult to move as Ashley,* but will have the brain, and emotions and sentience of an *able adult.*”
These are all compelling voices, and they make the “Ashley Treatment” sound more and more wrong-headed. But then I go back to the parents’ site, where they say that no one has the right to judge them unless they have a disabled child themselves. I don’t disagree with them, and it’s why writing this post has been so hard.
I think more than anything, what sickens me is that the general public’s judgments have been directed at the parents. They’re in a terrible position, and they made a choice that they believe is for the best. And while they were the parties who ultimately directed their child’s care, they did it under the supervision and guidance of medical professionals, professionals who are there to provide considered, dispassionate recommendations. And it’s those professionals who should be the focus of any outrage, not the parents.
Most of all, I feel like I don’t have the right to be saying any of this. When I read about the physical and emotional toll parents with disabled children face, I want to delete this whole post, and write about something I’m actually qualified to address, like kitty cats. These are parents who dread the day that they will no longer be able to hold a son or daughter who will always be, mentally, an infant. Who am I– who is anyone– to say they’re wrong for wanting to keep their children happy and comfortable?
The only people I can really summon up any anger toward are those responsible for our foundering health care system, leaving the disabled and their families to conjure up their own jury-rigged solutions. Until the entire system undergoes a complete overhaul– and I don’t think any of us are holding our breath for that leap forward– I’m afraid there will be more families hurtling themselves down this same slope.