The Ashley Debate

The disability rights community has been raging about the removal of 9-year-old Ashley's uterus and breasts for days.  As you can probably imagine, the people who most keenly identify with the young girl who was the subject of these procedures, people living with disabilities, tend to be highly critical, to put it mildly.  And much of their outrage is against the way the debate about it tends to utterly ignore their views -- yet again.   This comment from "Edge-centric" on the CNN's coverage is representative:

No vote

In the continuing media attention given to Ashley's Treatment, CNN today posts what I suppose they consider a representative sample of emails they've received on the story. Reading Controversial care: Your e-mails - CNN.com makes you wonder if there has ever been such a thing as a disability rights movement.

As if to underscore the marginality of disabled people as to having any kind of stake in things that are done to them, the CNN Quick Poll appearing in the left-hand column of this web page asks, "Who should have the final say on allowing disabled people to have controversial surgeries?" Voters can select one of two choices: "Caregivers" [sic] -- or "Ethicists."

This speaks volumes.

Here are some other reactions.

On my listservs of caregivers, mostly parents of kids with disabilties, the reactions to the procedure itself seem to be equally negative.  But you also see a lot of sympathy for her parents and outrage at the lack for social support for caregivers of people with disabilities that would cause her parents to consider this a compassionate and rational way to deal with the logistics of the lifetime of care that their daughter is going to need.    

As for me, I find myself wondering if we've really come that far from the days of Buck v. Bell. 

Lisa