Disabled People Deserve Dignity

It's old news now, but I finally have my stomach settled enough to speak about the so-called Ashley Treatment. If you've been completely out of the loop, you might not have heard about a disabled girl who, at the age of six, underwent intensive hormonal therapy and major surgery at her parents' request in order to keep her "small." CNN this morning reported that disabled persons and their caregivers are speaking out against this "treatment" and well they should.

I went to the parents' blog and I have to say, I was quite unsettled by their attitude toward their daughter. I do not question the love they have for this child -- it's obvious that they love her. But they obviously have it in their minds that Ashley is not an equivalently human compared to everybody else they know. The whole "pillow angel" thing really creeps me out. They say they call her that because she stays wherever they put her, usually on a pillow, and because she's so sweet and angelic. I'm sorry, but "pillow angel" sounds like a stuffed toy you buy at Hallmark. It's dehumanizing.

Then there's the whole issue about how they interact with her. She'a apparently placed somewhere on a pillow and treated to a light/music show pretty much all the time, which stimulates her brain enough that she kicks and waves her arms like any young baby would. Ummmm...I thought they were getting this "treatment" so they could include Ashley in family activities? She's in her room so much, alone, that they speak in terms of "visiting" her, as if she was out of town or something. They say they really like to visit her in her room and hold her hand and absorb her energy or something like that. As one commentator on another blog I read said, "That's how parents interact with a DEAD child..." and I think they're right about that. It's exactly how a parent who had lost a child would respond to that child's body between the time of death and burial.

They make some odd claims about why the treatment was necessary. They had to have her breast buds removed because big breasts run in the family and they claim it's uncomfortable to lie down with big breasts. Huh...I guess millions of women around the world who happen to be well endowed have insomnia because it's too uncomfortable to lie down in their beds at night? Or maybe they sleep sitting up?

Another claim regarding the breast removal was that they didn't want Ashley's caregivers to think of her as a sexual being. In another paragraph, they say that the parents and grandmothers are the only caregivers that would ever take care of Ashley. Ummmm...okay, then, are Mom & Dad and Grandma or the other Grandma going to have sexual attraction to Ashley down the road? Then I'm thinking it's Mom or Dad or Grandma or Grandma who needs some medical (psychiatric) attention, not Ashley. And if they are referring to other caretakers after they've passed on, they need to get a clue. If a caretaker is going to sexualize a disabled woman, it's going to happen even if Ashley doesn't have big breasts.

They also said if she grew more, she wouldn't fit in the bathtub. Ummm...is a little remodeling job out of the question to add a bigger bathtub? Or can't they rig up an incline board so that she's slightly sitting up and still fits in the tub?

The one that really burned me up was the hysterectomy, which had a two-part claim: first, Ashley wouldn't be using it and second, sometimes disabled women are raped.

In the first place, a womb is part of what makes a person female. So Ashley WAS using her uterus, even though she wasn't using it to make babies. It was a healthy organ and removing it did NOTHING, I repeat NOTHING to slow or stunt her growth, aid her comfort level, or accomplish any of the goals they said they wanted to accomplish. What it meant was that mom & dad and other caretakers wouldn't have to deal with Ashley's menstrual cycles. Pure convenience.

And the rape thing? Look, disabled (and elderly) women are raped all the time by caregivers and it's a horrible, horrible, HORRIBLE situation that should be stopped. But how on earth is giving Ashley a hysterectomy going to keep her from being raped? Basically, they put Ashley through major surgery that was medically unnecessary in order to accommodate somebody else's crime. That's so sick and twisted, I don't know what to say. Somehow, her parents now think it's now okay for Ashley to be raped.

I have a friend whose 11-year-old niece has the exact same condition as Ashley. Her parents, grandparents, my friend & her husband, and other relatives are her constant caregivers. They are from a small town in Nebraska, and they take her along to basketball and volleyball games at the high school. They take her to church every Sunday, to weddings, to funerals, baby showers and birthday parties. They take her swimming -- she loves to be supported in the pool, floating around in the arms of a family member.

Yes, as she gets bigger, it's harder and harder to carry her or lift her from her wheelchair to the car or to bathe her or feed her or whatever. But they don't call her "pillow angel" and they don't keep her in a room with the tv flashing colored lights at her, and they don't feel any need to stop her from growing into the woman she's going to grow into. She may never speak...or someday, medical science will find a way to unlock whatever is shut down in her brain. She may never walk, but they still find a way to bring her into every aspect of family life, including sitting down together at meal time. And I would lay money on it that any member of the family would balk at the suggestion that she's equivalent to a three-month-old mentally. When she was three months old, she was three months old. Today, she's eleven. She's not the same person she was when she was three months old. She's grown. She responds to different stimuli than she did when she was a baby.

Her family is affording her the dignity of growing up no matter how differently she grows up, no matter how disabled she is. She's human to them. A real person. A real daughter. A real member of the family. Not an inanimate object. Not a "pillow angel."

And I'll see Ashley's family's difficulty in caring for her and raise them one with my friend's family: her disabled niece has a little brother who is also severely disabled and confined to a wheelchair. His condition is different than his sister's, but he won't walk or hold a job or get married or do anything like that, either. What he will do is grow up and be a valued member of the family.

--Sparki