Wednesday, May 9, 2007

Civil rights are indeed inconvenient: Ashley X parents respond on their website to WAPS report

The parents of Ashley X disagree on their website that it should be necessary to follow the court-mandated procedure of obtaining approval prior to sterilizing a child with a disability. In their statement they write that they consulted an attorney (whom they refer to only as a "disability lawyer"- not sure if that's true since that specialty doesn't exist in some states but since I don't have a name I can't check) and were told by the "disability lawyer" that the law didn't apply to their daughter. They state that " the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. "

This is an argument that dehumanizes those who are more "severely disabled". Drawing lines like this is the dangerous part of this whole debate - if you take this approach (shudder) at what point does a person with a disability lose his/her civil rights? Unless we're going to argue that civil rights are "silly" and frivolous in general, that's a question that unversally needs to be answered as follows- all human beings are deserving of the same protection and equality. Basing an "entitlement" to protection by somehow reaching a certain standard of functioning negates the entire point of protecting people with disabilities in the first place.

They then state that : "Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s."

Yikes! This is like saying that having to follow any procedure to protect children with disabiltiies or any other vulnerable group is a "burden" (interesting choice of words) and is outweighed by considerations of convenience. The parents of Ashley X and the hospital board did indeed circumvent the law, which the hospital board has admitted and intends to rectify.

The parents of Ashley , on the other hand, seem to see nothing wrong with what they did even in the face of a finding that the procedure was done illegally. In fact they call it a burden and an "undue obstacle" to follow the law. The parents' web site is highly visible as a result of the "debate" (which we now find out was over an illegal procedure) and the parents are still not willing to acknowledge that we live in a society that recognizes the constitutional and common law rights of people with disabilities - including court mandated procedures that were violated with Ashley.

In any case, since their statement has been put out there in the public, it will draw responses like mine. The choice to issue this statement in the face of a finding by the Washington Advocacy and Protection report that it was done illegally, in my opinion, is a continuation of a campaign to promote the "Ashley X treatment" without court approval. Basically the parents should remove the parts of their statement from their web site that encourage illegal behavior - performing procedures by bypassing the laws already in place - by arguing that it is a burden and undue obstacle And we need to consider whether the laws in place are sufficient to protect the rights of disabled people in the face of this kind of response.

We also need to separate out the excuses people use to try to take away the civil rights of disabled people. It is certainly true that parents of children with disabiltiies are a sympathetic group- and rightly so. They are good, well meaning people. However when they break the law or speak out publicly in ways that encourage breaking the law, it is necessary to set aside our sympathy and see their behavior for what it is.

Many who defend the parents' position in this case refuse to see that Ashley X's parents publicized this treatment on a web site, suggesting it would work for other families. Now that a finding has been made that it was done illegally, not only has no deterrent been suggested - such as sanctioning the parties involved, but the parents continue to make arguments that would put the civil rights of disabled children at the mercy of the convenience of everyone else. They criticize the very laws they broke making the same arguments that caused them to break the laws in the first place.

To which I say: Civil rights are indeed inconvenient - to those who seek to violate them.

[A link is provided at the top to the website of Ashley X's parents.}


Anonymous said...

Oh, wonderfully said, Ruth!


goldchair said...

At the very least their position should have changed. By not acknowledging that they broke the law, they do nothing for their "cause". There is no way to fix what was done to Ashley but if no sanctions are going to imposed that again sends a message that disabled people are worth less. Shame on our system. And why wasn't some kind of gag order part of this so called settlement? It's outrageous.

Penny L. Richards said...

Y'know, I certainly hope they don't apply this reasoning to other contexts where general legal safeguards are in place to prevent harm:

"We acknowledge that there's a need for security screenings in airports, but we think these policies are too broadly applied. They should only screen the people with bad intentions. We travel with only the best intentions, so any security screening for OUR family is a terrible burden."

tvs said...

I get so angry when I read about this case. I worry that my anger approaches the level of a deadly sin. Because I just want to knock the parents' heads together. I know they must cling to the rightness of what they've done so they aren't overwhelmed with grief and guilt... but OH!