is a young woman in the
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 thestory 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 " " 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. Seefor 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.