Modify the System not the Person

From the Disability Rights Education & Defense Fund:

"Benevolence" and "good intentions" have often had disastrous consequences for the disability community.

and

We deeply empathize with parents who face difficult issues raising children with significant physical and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. (my emphasis) For decades, parents, families, and the disability community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to enactment of state and federal laws in the 1970s that establish extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

and

As parents and adults with disabilities, our experience demonstrates unequivocally that all people with disabilities can be an integral part of home and community, if needed help and support is available. It is not always easy to find home care workers who are competent and empathetic. Too often, we must fight to persuade social service and healthcare bureaucracies that help at home and appropriate equipment such as adapted wheelchairs and mechanical lifts are essential and fundamental to our autonomy. However, if these problems seem insurmountable, or cannot as a practical matter be surmounted, as Ashley's parents suggest, then it is all our duty to change the system so it works rather than find novel ways to modify people so that they will more easily "fit" a flawed system. (my emphasis)

And this question...

Where, we wonder, was the network of programs and services that exist in every state when Ashley's family decided the best option was to employ medical procedures that violated their daughter's autonomy and personhood?

And finally, they note the sad irony of the treatment of this child and the recent United Nation Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.

You can read the whole statement from the Disability Rights Education & Defense Fund here.