Tuesday, May 08, 2007

News Conference on Disability Ethics: Chicago: 11 am May 9 at AMA

For Immediate Release: May 9, 2007

For Information Contact:Sharon Lamp (847) 803-3258; (847) 894-4907 cell
Amber Smock Ambity@aol.com

FRIDA Hosts Disability Rights News Conference on Ashley X and Emilio Gonzales Renews Call for the American Medical Association to Engage on Disability Ethics

(Chicago) On Wednesday, May 9 at 11 am on the sidewalk outside the American Medical Association (AMA) at 515 N. State St., Feminist Response in Disability Activism (FRIDA) will host a news conference about current crises in disability ethics. The news conference will include speakers from disability rights organizations ADAPT, Not Dead Yet, Equip for Equality and Access Living of Metropolitan Chicago.

The group will respond to the Washington Protection and Advocacy System’s May 8 findings that Seattle Children’s Hospital failed to obtain a court order for the sterilization of nine-year-old Ashley X. In addition, the group will respond to the current Texas futile care law crisis regarding 17-month-old Emilio Gonzales of Texas.

Ashley X is a nine-year-old girl with a profound cognitive disability. At the first signs of puberty when she was six, her parents approved a “treatment” which included a hysterectomy, removal of breast buds and massive infusions of estrogen, all with the effect of maintaining Ashley’s childlike size and appearance for the rest of her life. Disability rights advocates worldwide have since united in opposition to the ethics of the case.

Emilio is diagnosed with Leigh’s Disease, a degenerative muscular and respiratory disease. He is on a ventilator and feeding tube, without which Emilio would quickly die. Under the Texas futile care law, his doctors and the ethics committee at Emilio’s Austin hospital went against the wishes of his mother, and voted to discontinue Emilio’s treatment. His mother is currently locked in a court battle to keep her son alive.

FRIDA, ADAPT and Not Dead Yet have been advocating since January to develop a meaningful ongoing relationship on disability ethics with the AMA. The activists’ efforts have resulted in a meeting and a letter exchange, but have recently stalled due to inaction by the AMA.

The coalition is asking for the AMA to pass a resolution against the ethics of the Ashley X case, for an ongoing relationship with the AMA ethics group to develop disability ethics programs (preferably in the form of a Disability Ethics Committee), and for support of the Community Choice Act (CCA), which would enable people with disabilities on Medicaid to receive home support services so they do not have to live in institutions. The AMA has agreed to look at the CCA; however, it has made no public announcement on whether it supports the CCA.