Thursday, April 26, 2007

Update, and Thoughts on Disability Rights

For those who have been following the AMA campaign, here's the latest: no response from the AMA. We have sent letters and even done a walk-in to follow up, all in a very nice fashion, but no response. Therefore, be on the lookout over the next few weeks for further FRIDA action.

For those who have been following the Emilio Gonzalez case: he has a court hearing on May 9 on whether to extend the Temporary Restraining Order (TRO) against the hospital pulling his ventilator. Until then, advocates across the country are working with folks in Texas to secure Emilio's rights.

Both the cases of Ashley X and Emilio Gonzales have elicited strong emotional responses and divided points of view. In Ashley's case, FRIDA took the stance that altering her body according to the parents' wishes and the hospital's approval was against her human rights. In Emilio's case, FRIDA's position is also against the hospital, but happens to come down on the mother's side. What's the difference? Is there any kind of similarity? WTF, FRIDA?

Speaking as an individual here, in trying to explain how I see FRIDA's work, I feel that FRIDA is basically coming from a disability rights perspective and the universal need to recognize those rights. In both Ashley's and Emilio's cases, we are looking at children who are unable to speak for themselves. As children with disabilities, they have the right to bodily integrity, in line with the UN Convention on the Rights of Persons with Disabilities (which the US has yet to approve). As people who cannot actually communicate for themselves, they fall into a very gray area of human rights. Their parents speak for them, and medical ethics committees and doctors presume to decide whether what the parents want is okay.

In addition, the feminist concern in both these cases is strong. In Ashley's case, we were concerned that it was considered all right to tamper with a little girl without her consent. In addition, we were concerned that no one was really looking at the fact that three of her four family caretakers are female. Most caregivers ARE female and caregiving is a profoundly feminist issue. In Emilio's case, he is the child of a young single mom. What is the nature of motherhood? How is it complicated by disability and how society interacts with disability? Is there a line between motherhood and caregiving? Is that line blurred, willingly accepted, or rejected? Who tries to moderate that line...for example, medical-industrial entities? These are just questions for you, the reader's, consideration.

But for me, bottom line: Ashley's and Emilio's cases are disability ethics cases. Not right-to-life or -death issues, not pity cases....purely cases where some people have an issue with the fact that a kid has a disability and there's no social structure to support them. That is what we need to work to change.

FRIDA, in my view, is most essentially about the right of females with disabilities to maintain control and choice over their bodies and their lives. (Really, the right of all people with disabilities, regardless of gender.) FRIDA is also about highlighting issues where feminism and disability come into play. Sometimes, FRIDA's position is not too popular. However, the reality is that life is diverse and what is most important is to listen to the voices of women who are living the people with disabilities, as moms, as family members, as concerned citizens. I truly respect my fellow members of FRIDA as strong women who KNOW when someone has a problem with the fact that they or those they love have a disability.

Amber Smock