Thursday, October 11, 2007

One More Time... for Katie

Katie Thorpe is a young woman in the UK who has cerebral palsy. Her mother wants her uterus removed to save her the "pain of menstruation.” Many people have blogged about her in the last few weeks as the powers-that-be consider the request.

I wanted to write about her too. But I had insecurities about it. Was there more to say? Did I have anything new to contribute to the discussion?

A Kick in the Seat

I received a forwarded email from a friend yesterday. The original email was a comment by a young woman with a disability who is the vice president of a national youth leadership group. She wondered aloud why so few people leave comments after the online blogs/position papers about Katie. Were there more people like me, I wondered, who feel unsure about their ability to add anything to the conversation?

I've now decided that, if ever there was ever a story that needs repeated attention, that needs to be looked at from all angles, hashed and re-hashed again, it is this one. This story screams out for the 24/7 cable news network version of "Brittney's not wearing panties" attention. Yet media outlets remain silent; and as Stacey points out so, pretty much, have we as a community.

Upon introspection, I had not written because the story left me absolutely stunned. I first heard about mutilations like this when the Ashley X story broke. Since then I learned that other children preceded Ashley, though who really knows how many. When what happened to Ashley became public, it sparked international debate.

I assumed we learned from that tragedy; that parents, doctors and ethicists, struggled just as the disability community did, and they realized that what happened to Ashley is unacceptable, no criminal. I assumed that while it was too late for Ashley X, our society learned from this horrid injustice and it would never happen again. The fact it is indeed happening again overwhelmed and depressed me. I felt defeated. However, I must not let that stop me from fighting against it.

This is also a story about Katie's parents, and I too, am a parent of a child with disabilities. I dislike admitting any association with their behavior. Look, we all know it is not easy being a parent. It is harder if your child has a disability. Then our health care, educational, and general social systems create yet more obstacles.

Katie's parents are succumbing to the pressure of it, rather than fighting for Katie's full birthright as a human being. This is a story about a young teen with disabilities that faces an assault from the very people who should be fighting the hardest for her rights - her parents. That is hard for me to accept. She should not have any surgery without sound medical evidence of pathology. It is the least any of us should expect. Monthly periods do not meet that burden of proof.

I try to avoid sarcasm when I write. Nevertheless, I do wonder, if anyone has come forward to suggest that young boys should be castrated before puberty to avoid the pain and embarrassment of ejaculation and wet dreams.

I also try to avoid making Nazi concentration camp analogies. Almost nothing matches the holocaust's inhumanity. However, the utter disregard for human rights that people with disabilities face today is closing in on it.

If you have a severe disability, the medical establishment considers consuming food and water, "extraordinary" treatment. New "cost savings" medical plans encourage doctors to "assist" people with disabilities right out of this life. A doctor can blatantly give massive doses of medication to "hasten death" so he can harvest the organs from a person with a disability, and not be charged with murder. And, little girls can have their uteruses and other body parts removed, because it makes it easier to care for them.

"One more time for the cause..."

An old friend used to use the above phrase often. It usually preceded someone asking if she really thought she could be a good parent as they watched her, with her two crutches, playing with her children; or overhread people wonder loudly if she should be walked without a companion; or any one of a hundred other societal face-slaps she had to tolerate. Each time she would sigh, throw her shoulders back, smile, and say "One more time for the cause." She would immediately jump into a friendly conversation with them.

She never wavered in her belief she could change the hearts and minds of others about people with disabilities’ civil rights. Even when she was in a crappy mood, or afraid, or bone-tired, she would muster up the strength to inform, educate and move a bigot a little closer to understanding that "we" are just like "them".

So, I think Stacey concern is valid; and as individual members of a minority group we should grapple with it. Personally, I am a little chastened by it; and that is a good thing. I still have much to learn.

If not us, who?

We do need to write those letters. See F.R.I.D.A. for the names of the decision makers in Katie's case. While you are at it, share them with your legislators. (I've sent mine.) Add your comments to support to those who wrote about it on their blogs. Write a letter to the editor at your local paper. Ask your own doctor how he would handle the situation. Hang a sign in your window; or find another way to bring this issue forward.

One more time, for the cause of justice; one more time for Katie.


misscripchick said...

do you dislike admitting any association (i.e. i have a gay friend! so i know all about X) or just the parent one? just curious because i've seen a lot of parents and parent organizations think they have prime authority over the disability rights movement and don't meet many parents who see that too..

that's a sidequestion of course. thanks so much for joining people in posting about katie...
i'm going to have to quote you/your friend on the "one more time for the cause" phrase.

Big Noise said...

I meant I dislike the association some people may make between me and parents who think like that.I don't believe my opinion trumps my daughter's rights, or even her opinions. Unfortunately, some parents, more than I'd like to see, think that way.

But I have the advantage of also being a person with a disability. So, that gives me another way to examine issues.

Does that explain it? Hope so.

Linda Edwards said...

Hi Cilla,

One notable aspect about the reporting and posting about Katie Holmes is the vilification and contempt that is being expressed for her mother, Alison. Sometimes, this contempt has taken the form of a binary that posits good mothers against bad mothers. Katie mother has been abjected as the absolutely bad mother, and all those who would react differently are claiming for themselves the position of absolutely good mother. As the bad mother, she is everything that the good mother never is. Yet noone has questioned the ethics of this representation. In her call for the removal of Katie's womb to spare her the "indignity" of menstruation, Katie's mother is drawing upon a particular form of discourse about women that sees female bodily processes as degrading. But she is not the author of this discourse. Rather, this representation of women precedes her, and as far as know, it originates, not in the bodies of women, but from masculine representations about women. Some women have access to different discourses about women, and for that reason, will make different decisions regarding what is best for their daughters. It seems apparent, however, that Katie's mother didn't. She is making a decision based upon what she knows. This doesn't mean we shouldn't be critical of her decision. But how should we express our criticism in a way that is productive? Is it productive to vilify her? One consequence of this vilification is that it very divisive. It pits "her" against "us". And women against women. It also further isolates and ostracizes her. Katie's mother was already isolated from alternative forms of knowledge. And her isolation led her to make the decision - yes extreme decision - to request a hysterectomy. One question that arises from this is how might we ensure that alternative forms of knowledge are available to her in the future. Is someone providing her with ideas about alternative treatments for Katie now? According to an article just written by Kate Ansell, who like Katie, also has CP, Alison Holmes might well be right that having periods will be difficult for Katie. Kate's advice to Katie's mother is to wait and see how they affect her, for it might be the case that they won't be difficult. What is noteable about Kate's article when read alongside the majority of articles is its absence of vilification and contempt for Alison Holmes. Although she is both critical of, and vehemently opposed to the removal of Katie's womb, and she says so in her article, her approach is not to posit herself in opposition to, or as better and wiser than, Alison Holmes, but rather, to her equip her with knowledges that might encourage her to think and act differently.

Betty said...

When I read this blog I was at first shocked to hear about the "Ashely treatment". After doing some online research and reading the family blog, I think you should take a look and reconsider your views on Ashley X. I don't know what disability you have, but I'm sure that you are not thinking of the severity of Ashley. Sometimes when people with disabilities read about other people with disabilities we compare ourselves to them too much. I can honestly say from what I read on the family blog, that what they did for they're daughter was for the best, to the best of they're knowlage. They exstensively thought about and reviewed the reasons to give her hormone therapy, and the three surgical procedures. They did not do it to make it easier on themselves, but to make it easier for Ashley based on the family history, and the information about other "Pillow Angels". Please take a look at they're site. I know this is an old blog but I really feel it is necessary to know the whole story in this situation.