The Ashley Treatment

No press release or newspaper article could do justice to the questions anyone naturally has when they hear about a family who chooses to intervene with the growth and sexual maturation of their severely disabled daugher. But the blog by the girl's family most certainly helps.

As far as we could tell, there is no exact precedent for this, though cases of clearly merited hysterectomies (surgical removal of the uterus) in severely retarded women laid the early groundwork for a decision that the family ultimately describes as easy. We're really not convinced of "easy," but if you read through to the comments from other families faced with similar situations, you can begin to understand what they were thinking.

We can comprehend the rationale behind hysterectomies (despite the fact that they are more invasive than just the estrogen treatments), but are struggling with what it is about the hormone-induced growth restriction that seems so much more disconcerting. Despite the arguments that making her care more easy on her family (by keeping her small) will make Ashley's life better, the logic feels a little circular. Regardless, are the treatments ethically that different? By thinking that, are we heading down the slippery slope to full-blown eugenics, as some critics are asserting? Do those critics have severely disabled children they have to care for 24/7?

Seattlest grew up around a wide variety of disabled people, in large part by being close to many families with disabled people. Personally, we didn't have to face a decision like this, but our family knew others who were in about the same ballpark. And we can confirm this much: there is no clear answer. As someone in our family said about this: "It would appear that they have simply taken an odd road, out of all the ugly ones they had available."

Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, makes one other important point for us:

This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities. As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients.