How can anyone make a decision regarding the welfare of another human being if they live in a climate prejudiced against that human being's very existence?
If Ashley (see summary, next entry)is considered abnormal, a terrible accident of fate, then it is okay to do what you want to her because, obviously, she doesn't care, and she's a special case. Not a real human being with dignity. One of the ethicists in the case, quoted from the parent's own blog (http://ashleytreatment.spaces.live.com/blog/), calls her grotesque:
[...] as George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies, alludes to in a related article4: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
He believes that adult woman with developmental disabilities are grotesque.
I believe smug male ethicists are grotesque.
Appearance is at the heart of this case, despite what they argue. They say her breasts were removed for "comfort" as she will not reproduce and will not need them. Her uterus was not needed, so they simply removed it. That argument doesn't hold water. Ashley will not ever use her arms or legs. Why not amputate? She will have less body mass for bed sores. (Remember that body mass and bed sores was a key argument). If her hair bothers her, why not shave her head?
Oh yeah -- removal of arms and legs might render her "grotesque."
It's so much easier to be cute and young and disabled. That makes great posters. To be the adult with the developmental disability is a bit less cute and therefore a bit harder to accept.
On some days, I can almost understand the attenuation, but then I think of the breast removal and hysterectomy and I get sad and I understand how this isn't about keeping her small, but it's about making her a child forever because THEY CAN. What kind of place is this where parents can decide to do this to a six year old?
It's a world where we think it's easier to maim the child than to fight for her right to good care.
This reminds me of another important article I've read:
Prenatal Test Puts Down Syndrome in Hard Focus
This article describes how parents of children with Down Syndrome and people with Down Syndrome get together to educate parents, genetic counselors, and doctors about their lives.
But, well, what is discrimination? I define it as having your fate decided by a single characteristic you possess. To abort a pregnancy based simply on a disability is the worst kind of discrimination.
If you have a baby with Down Syndrome, you have a baby. He/She has a name, is a person, has ten fingers and toes and an extra chromosome. It's a difficult shock, but one that can be lived with. Baby with disability. Person with disability, just like person with blue eyes, red hair, etc.
But if you are pregnant and find out about Down Syndrome, Angelman Syndrome, Spinal Bifida, or anything else, what do you have? Not a baby. Not a person yet. Just a terrifying disability in a culture that thinks disability is so terrible that parents can alter their children to make it more palatable. To have a child with a disability is still somehow shameful. Didn't you know? Couldn't you abort?
My life would be so much more dim without all the wonderful people with Down Syndrome, Angelman Syndrome, and other developmental disabilities that I know. The world would be a much more dim place. It's not that I wish developmental disabilities on anyone, and if you've ever seen a child screaming in frustration because he or she can't speak, then you know what it means to watch someone suffer and to be helpless to ease that suffering.
But I do try to ease that suffering. I work on communication devices, I help people try to understand. No, it's not fair that child should suffer more than someone else. But it's not fair that a star athlete breaks a bone and is no longer getting a scholarship, for instance, or that someone's daughter struggles in high school while a classmate goes to Harvard. Life isn't fair.
This is why I like the idea in this article, that people with Down Syndrome and their parents are affirming that their lives are more difficult, but they ultimately have joy and value. The medical profession, especially the genetic counselors and OB/GYNs, NEED to understand this if they are to provide accurate information to women in crisis.
Again, I'm pro-choice. But when the whole culture denies that a child with a developmental disability has a right to exist, that isn't a fair choice. I can only continue to say we need to change the culture, show the rest of the culture that people with developmental disabilities have valuable lives. That's the only way we will keep the Ashleys from being shrunken and maimed and keep the population of people with Down Syndrome from facing extinction.