Comments about the Ashleys of the world

Regarding the story of the little girl Ashley, demeaned with the name, "pillow angel" a term which from a normalization perspective is sick in and of itself, I would like to make two points.

First, we cannot marginalize people and then criticize those who are left alone to care for marginalized people for their decisions. I wonder if the the adults in Ashley's life felt supported in her care, anywhere. Sure the wrongness of the surgeries stands on its own merits. We can criticize them. However, if we hope to avert a rash of such medical treatments toward people who inconvenience their families by their very lives, the community, and I would say the faith community, the Christian Church needs to come along side of those families and individuals who face the challenge of severe disability in their lives and provide support. Why aren’t the little Ashley’s of the world in the Sunday School classes of most churches? Yet we will criticize those who perform abusive surgeries. Where is the church at the birth of such children? Yet we will criticize the decisions of those facing the birth of a child with a disability who choose abortion...at least as a church I hope we will be critical of such people (I'm not sure we actually are). Obviously, the laws are not going to prevent families from stopping tube feeding, or performing radical surgeries on family members. However, if we as the community provide support to people challenged by the unknown of disability in their lives, those faced with the kinds of decisions the medical profession increaingly offers, will be less likely to abort, or create people who are further disabled by surgery, because they do not see themselves as facing their challenges alone. They see the experience of others in their community whose child with disability may be a value added to their families, or their churches or their communities. But those children have to be present and they have to be supported to change the minds of people tempted to do the wrong thing.

Second, the decisions relateive to performing the procedures on Ashely were condoned by a group of medical ethicists at the hospital where the surgery was performed. Well, medical ethicists are lost. I would love to know, for example, how many of those on the medical ethics committee who made the decision to go forward with the surgery, even know a person with a profound cognitive/physical disability. I wonder if any have friends with such disabilities. I wonder if any ever spent the day with a person with a severe disability. Decisions are made on the basis of ideas ethicists have about who those people are, and I would suspect they have largely never gotten past the notion of people with disabilities as “other.” My goodness, the medical profession has become rabid over down syndrome being prenatally diagnosed and those detected being aborted. These doctors are listening to medical ethicists when they say such abortions are humanitarian because they prevent a suffering, or poor quality life.

So lets point out the madness of the reasoning, and the surgery, and those who defend decisions by medical ethicists. But lets also take away the argument that the families faced with the challenges of raising children with severe disabilities are in it alone, by coming alongside of such families with acceptance and support.

McNair (fcbu)