Wednesday, February 07, 2007

FRIDA Statement As of Wednesday, February 7, 2007

On January 11, Feminist Response In Disability Activism led a coalition of people with disabilities in an action at the American Medical Association to demand three things. First, that the AMA meet with our coalition to review the ethics in the case of Ashley X. Second, that the AMA issue a resolution opposing the decision reached in the case of Ashley X. Third, that the AMA support social solutions to social problems by endorsing MiCASSA, the Medicaid Community Attendant Services and Supports Act.

The AMA promised that day to work on setting up a meeting with CEO Dr. Michael Maves. The AMA has failed to uphold that promise and in fact has stated that they will refuse to meet with us. FRIDA stands here today with our allies to ask once again for a meeting with the AMA by February 12.

FRIDA feels the AMA’s refusal to open a dialogue with our coalition is a symptom, so to speak, of doctors’ disconnection from the everyday lives of real people with disabilities.

Disconnection is fatal. It allows people to treat one another as though they were less than human. Disconnection led us to the practice of forced sterilization in this country. Over 60,000 Americans were sterilized without consent before protective laws were passed. Members of the medical community, who were also prominent eugenics leaders, promoted the old laws that allowed sterilization.

Disconnection led us to cases like that of Baby Doe, who was born with Down syndrome in 1982. Baby Doe’s doctors advised his parents not to approve a surgery that would unblock Baby Doe’s esophagus, because the baby’s death would leave everyone better off. So Baby Doe starved to death at one week old. 20 years ago, the euthanasia of newborns was commonplace. Baby Doe’s case, and the case of Baby Jane Doe, led to federal legislation forbidding the withholding of treatment from disabled newborns.

Disconnection has led us to the case of Ashley X. Little is understood about the potential of people with what appear to be profound cognitive disabilities. While Ashley may not be able to speak English or solve math problems, we cannot so easily define her capacity for emotion and identification. FRIDA is offended by the effort to label Ashley and make her less than human. Every effort should have been made to preserve Ashley’s bodily integrity. Ashley was not at risk of death. The removal of her breast buds and uterus, along with her growth stunting, are not a 100% safeguard against the uncertainties of the future. As women with disabilities, FRIDA is angry that in a nonmedical situation, medical means were used to solve a social problem.

Last December, the United Nations passed a Convention on the Rights of People with Disabilities, which reads in part, “Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.” Baby Doe had to die for federal legislation that saved the lives of others. What will it take to protect the bodily integrity of people like Ashley, who are not ill, only disabled?

Many doctors have worked to speak out on this case, most notably Dr. Henry Betts, who is the former CEO and President of the Rehabilitation Institute of Chicago, or RIC. RIC is the number one rehab hospital in the country. Dr. Betts wrote a letter to the President of the AMA requesting that the AMA meet with us. The AMA has chosen to ignore Dr. Betts.

The AMA is out of touch with disabled people. 11% of American children have disabilities. One in five Americans in the general population have a disability. We in FRIDA want to know why the AMA refuses to engage on disability issues, a topic of pressing concern to so many of us. FRIDA asks the AMA to today begin seeking social solutions, not medical “fixes,” to social problems.