Friday, June 22, 2007

Petition for the creation of a Disability Advisory Committee, Day 4

Signature count, day 4, 258

For a number of respondent's to the petition, the creation of a Disability Advisory Committee is tantamount to an ethical relationship between the medical community and people with disabilities. In the words of one respondent: "There are difficult decisions that face the medical community. Ethically speaking, all voices must be present for ethical and humane decisions to be made."

In other words, writes another, people with disabilities "have an awareness and understanding that cannot be duplicated, and the issues are literally life and death." Because
"disability awareness education among able-bodied people does NOT substitute for adequate representation of disabled individuals" then the representation of the particular perspective of people with disabilities within the structure of the AMA is tantamount to good ethical practice and to the possibility of an ethical relationship beween them.

I am reminded of the recent investigation of the "Ashley Treatment" by the Washington Protection and Advocacy System (WPAS), which found that the sterilization of Ashley was "conducted in violation of Washington State law." According to the WPAS's report, the violations appear to have occurred as a result of a "lack of policies at Children's Hospital regarding the sterilization of minors with developmental disabilities," and also because there were "insufficient internal controls" at the hospital "to ensure that Ashley's independent legal interests were protected." So as to protect the rights of children with developmental disabilities for whom the "Ashley Treatment," or other growth attenuation treatments, may be sought in the future, it recommended, amongst other measures, that the hospital include a disability rights advocate on its ethics committee. In other words, the representation of the disability rights perspective of a person with disabilities on the hospital ethics committee was tantamount to the protection of Ashley's human rights. And it is tantamount to protection of the human rights of people with disabilities in the future.

For one of the petition respondent's, it is imperative that the AMA create a Disability Advisory Committee because "doctors need all the data they can get before making life changing decisions." The case of "Ashley X" is but one example that this is so.