gray areas and pillow angels
05.09.07 • comment (5) • trackback
The state of Washington has ruled that a procedure used to preempt the physical maturation of Ashley, a profoundly disabled nine year-old girl, is illegal since it sterilized her. The combination of surgeries and hormone treatments is being referred to as the Ashley Treatment, as it is believed that she is the first person to ever undergo procedures to prevent puberty.
Legal technicalities aside, it’s a real moral quagmire. One side argues that the procedures make Ashley easier to care for by keeping her child-sized, as well as sparing her the pain and trauma of physical developments that she will never be able to cope with anyway. The other side argues that the medical intervention is unethical, denies the girl her reproductive rights, and puts us on a slippery slope to using similar interventions on anyone we find to be inconvenient. I do believe, however, that Ashley’s parents made the right decision. Ashley has “static encephalopathy.” Medically speaking the term is about as vague as you can get. It means, “an unchanging brain injury of unknown origin,” and in her case it is severe. Physically and cognitively, Ashley is still an infant. She hasn’t even learned how to pick up her head. Normal development and procreation were never going to be options for her. The procedure, though it may feel wrong to outside observers, will probably improve quality of life for both Ashley and her parents, and given the unique circumstances I support their decision.
However, I object to the family’s use of the term “Pillow Angel” to describe their daughter. I find it creepy; it makes me cringe to read it. It’s taken me nearly an hour to figure out why, but here’s the reason. It equates dependence with goodness. It ignores the realities of a difficult situation and focuses only on an image. It’s weirdly religious. I know it may sound harsh, but the term reeks of denial and thought disorder. And it sounds a little bit like the latest line of linens from Macy’s, or a new bra from Victoria’s Secret. Even worse, Ashley’s family uses the term repeatedly—capital “P”, capital “A”—to refer to other similarly disabled children as a group. It’s hard for me to put into words why I find this so deeply unsettling, and I don’t think I’ve done a great job of it in the little time that I allow myself to write. There’s just something infantile (on the part of the parents) about the phrase the weirds me out. Does anyone else get the same vibe?
05.09.07 #
Man, the term “Pillow Angel” has been bothering me too, but I can’t put my finger on why either. All the things you said about it are part of it, but there’s more too–and the way they describe it is ALSO creepy but I ALSO can’t explain why:
“We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow.”
Religion/spirituality seem to play a big role in how the family relates to their daughter and interprets her situation (”We’re often gathered around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit.”) Maybe that’s why I’m not relating to it well.
Either way, I like that they have a web presence because they appear to have connected with a lot of parents in similar situations. I’ve often thought about how one of the areas the Internet has REALLY revolutionized is medical-related stuff, especially on the patient side. People–especially those with very rare conditions–can now network with others who have the same thing, whereas before they might have never even gotten to talk to someone else with the same problem in their entire lives. And in a more general sense, if you’re getting a procedure done (even a relatively minor one) or have just been diagnosed with something, it’s so much easier to get information and see if what your doctor is telling you is consistent with the experiences of others.
05.09.07 #
Yeah… I definitely get the same vibe. I think you hit it on the head by calling it infantile and ignoring the reality of a harsh situation. It indicates a lack of spitirual depth. Someone in Ashley’s condition presents profound questions about the nature of consciousness and the soul and what it means to be alive and what it means to be human. And of course, easy answers to difficult questions are Western religions’ specialty. Not that I can really hold it against anyone. Easy answers are very comforting. But no one grows with easy answers. No one matures. I hope no one takes this the wrong way, because I can’t know what Ashley’s parents have gone through, but people in Ashley’s condition are almost a physical representation of most people’s spiritual condition. Calling her a “pillow angel” presents the appearance of accepting the situation, but it really is just a denial of reality and a refusal to face it.
05.09.07 #
First: if we had known this treatment existed and if were an option, my family may have taken the same steps Ashley’s family did. I do not believe what they did is wrong in any way. Ashley, like Devon, will never have a use for reproduction. In fact, puberty and an adult reproductive cycle could be very painful and disruptive, not only for her parents, but also for her. For example, if you have a muscle cramp, you can get up and move to try to relieve the pressure/pain. Not so with people who can not even control their head movements. Hormone’s too can strike imbalances and cause pain or worse.
And then you have her caretakers, who will have to tend to her aches and pains, and yes, her bloody diapers. What dad do you know who would want to deal with that? On top of that, you also have the caretakers’ aches and pains. As fully disabled people grow larger, they naturally get heavier. With even more weight, they are less likely to be able to help with being carried. So caretakers can really injure themselves as their charges get older. Keeping patients small saves health, and it also saves money (no need for a lift system, large wheelchairs, etc), which can be funneled towards, say, school or medication or therapies.
Regarding the term “pillow angel:” I don’t like this any more than anyone else. It makes Ashley sound inhuman, like she’s already dead or a stuffed animal. But at the same time, the sprituality of the family’s connection with Ashley is one I can relate to. I often refer to Devon as my angel and believe that her spirit is more pure, more innocent. In touching her certain ways, I feel even more connected to her. I don’t consider this ignoring reality or a lack of spiritual depth. Much the opposite in fact: I have faced my sister’s mortality, visited her on what was supposed to be her death bed. She survived, not just because of medicine, but because her body refused to give up. I don’t consider her a holy angel or protector, nor do I think she has God personally at her back. But she is an angel to me because she is pure (i.e., untouched by society’s ills) and I am guided by her (to live a responsible life, to know how to love unconditionally, to see people and situations–and accepting them–for what they are). In other words, she enlightens me (though I am far from enlightened).
Those who do not know this situation can not possibly understand. We do what we have to in order to keep our loved ones close. To Damian, I don’t really understand what you mean when you that calling their daughter a pillow angel presents the appearance of acceptance when it is really denial. Nor am I sure where you’re going with your questions about the nature of consciousness and the soul and what it means to be alive and human. I’m sure it’s not what was meant, but it sounds like you believe these people are below normal brain functioning people. Would you mind explaining? I think we could have an interesting conversation…
05.10.07 #
To Allison, I’ll admit the assumption of below normal brain function was somewhere in the back of my head when I wrote my comment, and since you mention it, it’s not a safe assumption to make, since the level of brain function would depend on the injury. But I don’t understand how one communicates with someone who “cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk,” which is how Ashley’s parents describe her condition on the page Jon linked to. That sounds to me like a complete inability to express oneself in any way, and I could easily be overlooking something. As for the whole issue of innocence and purity and angels and society’s ills, where I’m coming from is that innocence and purity are not any more inherent to a person’s makeup than evil and guilt. A person’s innocence is determined by the choices they make, and I don’t understand how anyone can tell what choices people in Ashley’s specific situation are making, or if they’re making any choices at all.
05.10.07 #
I entirely agree with the dissatisfaction other posters have expressed with the term the parents chose to describe their daughter. However, I also think it’s important to remember that many nicknames — for children, for spouses or partners, for relatives — are often not intended for widespread dissemination outside the immediate family.
Would I have chosen that nickname? No.
Would I tell ANY reporter about a family member’s nickname? No.
More important to me, in reading the article (and the dozens of others on the subject, seeing as local WA news can’t seem to leave it alone) was whether the parents have the best interests of the child at heart, and whether the neutral third parties they asked agreed with them. They seemed to, and the doctors and attorneys apparently agreed that this was for the best. With that in mind, is there any real purpose in nitpicking a nickname?
The real issue here, to me, is something a little larger. I have a brother who is mentally ill, to the point that he is completely nonfunctional without his medication. Washington state law, however, makes it impossible for him to be forcibly medicated for more than six months at a time. Even then, the doctors are required to hold HIS word about side effects (he complains incessantly of minor ones, despite exhibiting no symptoms whatsoever) over his overall well-being or his counselors’ recommendations — so six months often ends up being six weeks, if that. Suffice it to say that his illness has only gotten worse over the last decade.
Should hospitals and legislatures be preventing these procedures or policies, as they’re now discussing? If my personal anecdote wasn’t enough, why don’t we talk about abortion?
http://slog.thestranger.com/2007/05/the_only_moral_abortion_is_my_abortion
It seems we’re all predisposed to think that our situation is special, but that others shouldn’t have exceptions.