What constitutes an acceptable life to a disabled person? Why is this question important? The answer may provide an understanding and basis for the many very important and also seemingly trivial decisions which must be made by and for that person. The decisions could involve medical procedures and treatments, education, employment, self-care and independence, marriage and parenthood amongst many other issues including the relationship to society and the world around that disabled person. So, who should set the criteria for the individual’s quality of life except the disabled individuals themselves? If the individual cannot communicate because of age, alteration of consciousness or other brain disorder, how should a decision be made about what should be understood as an acceptable quality of life for this individual? Will what is acceptable in one case be identical to what is acceptable in another case? And who should make this decision? Should it be a guardian, other family members, doctors, lawyers or the courts or some consensus of society? One element of society which has an ongoing interest in the treatment and “rights” of the disabled, has researched the issues and who have actively supported and vigorously broadcast their views and conclusions and demands to the rest of society are the disability rights groups. Note that I put the words rights in what are called scare quotes since the meaning is unclear and there is debate, certainly encouraged and supported by these groups, as to what are the rights of the disabled. In view of the close relationship of these groups, whose membership includes the disabled, to the disability issues, should it be up to the disability rights groups to set the standards or criteria that would apply to all disabled persons?
In an article written for the Perspective section of the September-October 2007 Hastings Center Report, Anita J. Tarzian writes about this issue beginning with views of what is meant by the term disabled. She then quotes what Nancy Mairs, a disability rights advocate, wrote in Mairs’ book “Waist-High in the World: A Life Among the Nondisabled”: “People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life.”
So, I put to my visitors the following question: as they explain to us their propositions, should disability rights groups ever sacrifice the disabled individual to the group’s agenda? ..Maurice.