In her Hump Day HMMM, Julie Pippert tells the story of Lakshmi, a little girl born in 2005 in India with four arms and legs, who was revered in her village as the reincarnation of the goddess Lakshmi. The condition was caused by a parasitic twin, which she eventually had surgery to remove.
This brings up all kinds of things for me as a disabled person. How much do we fix? When? Many Deaf parents who have deaf children won’t let them have cochlear implants, wanting to bring them up in Deaf culture instead. I am fine with that. They have a culture that will care for them. On the other hand, many hearing parents with a deaf child will go the cochlear implant route, and will enroll them in schools that emphasize oral skills to the detriment of sign language and Deaf culture. Are they doing their children any favors? I don’t think so. It seems like many of them do it because they are too lazy to learn to communicate with their deaf child in the child’s own language.
I’m a disability rights activist, but I disagree with some of my compatriots. The ones who think people like Terri Schiavo should determine their own course. As if they could. The ones who object to the parents of severely developmentally disabled girls having them have hysterectomies. I agree with the parents, the child having a uterus and periods serves no purpose. People who can’t speak for themselves, like Terri Schiavo and Ashley need someone to speak for them. And sometimes we have to ask what is best for society as well as for the disabled. Now, I’m not advocating the Nazi approach, but parents and partners should have the main say in the care of their loved ones. Not a bunch of so-called disability rights activists.
There is a lot of controversy in the disabled rights community about whether treatments, such as were done to Ashley to limit her growth and make her easier to care for are ethical. Particularly against the treatment was Not Dead Yet, a disability rights group that opposes assisted suicide and the removal of feeding tubes etc. from persons in a persistent vegatative state, and the Feminist Response in Disability Activism. FRIDA objects to the “desexualization” of the operation on Ashley.
I am on both sides of this issue. I am a disabled woman. In my life previously I have cared for people who are in persistent vegatative states and are severly developmentally disabled. I know what resources it takes to care for these people. While I agree with the critics that these things become necessary because we don’t put enough into the care of these people, I also see that there are people with more potential out there suffering while these people are cared for in whatever minimal way we care for them. It is a shame in our nation that 12 year old boys die of tooth decay.
I guess I just feel that everyone should have what dignity they can. There is no dignity in having a twin growing out of your bottom. There is no dignity lying in a bed for years being tube fed, and changed like a baby. There is no dignity in a young girl going through precocious adolescence, and growing breasts and having periods long before she should even if she was normal.
I guess I also feel we should put our money where it can do the most good. With all due respect to the parents of the developmentally disabled who fought valiently for their education, it is insane to send a severely developmentally disabled person to “school” until they are twenty-one when they don’t even have the ability to learn to turn over by themselves. It would be better to spend the money on gifted and talented programs.
What about me? What if someone decided that I was redundant? I may be someday. I have made up my mind that children are more important than I am. But as long as I can answer for myself it is my choice, when I can’t I hope my loved ones will do what is right for me and the world.
July 10, 2008 at 1:52 am
Great post. Thanks! I hear you talking about weighing cases individually, which I think is the smart approach You also suggest some basic questions, such as “where is the dignity” and “how does this benefit, is this necessary?”
Ironically, it seems that sometimes what people advocate for, concessions (did you read Ed T’s entry?), are asking that the world alter to make a special case normal, instead of altering the special case to make that normal—so from reading your post and Ed’s I see two angles I hadn’t previously considered.
After reading everyone’s thoughts, I’m left with “Love is not alteration when it alteration finds.”
Sometimes, we need to concede, either in ourselves or for others, because it is the most/closest right, such as providing the surgery for Lakshmi or ensuring safe entrances to buildings for the disabled. Sometimes, we don’t, such as providing 21 years of school for a vegetative person. Which is not to say the family couldn’t or shouldn’t read books, texts, etc. to that person, just that the expectation that it be provided is possibly not reasonable.
I hate to speak in absolutes based on broad spectrum and generalities, but hopefully I got a point across.
July 22, 2008 at 7:53 pm
This is a very thought provoking post. I agree that dignity plays a big part in deciding what needs to be fixed, but it’s a tough call when the person can’t speak for themselves. I had a close friend suffer traumatic brain injury in a car accident and spend two months in a coma with no dignity, but she made a nearly full recovery months later. But in the time that she couldn’t speak for herself, who was to say that it wouldn’t be worth the wait? How long is too long to wait?
I’m a week late for the Hmm, but check out my post here:
http://www.mommybytes.com/2008/07/autism-revealed.html