January 4, 2007

Ashley X story hitting prime time

The Ashley X story is hitting prime time and I have found myself embroiled in this controversy. Back on November 6, 2006 I published the article, Helping Families Care for the Helpless, in which I defended the actions of Ashley's parents.

This story has caused a media sensation now because the girl's parents recently published a lengthy and very well articulated argument in their defense. My article was one of several others cited in their blog post. As it is turning out, a public outcry is emerging against the actions of the parents; my supportive voice has come to represent the minority opinion. In the past 12 hours I have been overwhelmed with interview requests, including those by the Guardian and the BBC. James Hughes, my colleague at the Institute for Ethics and Emerging Technologies, has also been kept busy with interviews.

I stand behind my article and wish to re-iterate my stance that Ashley's parents have taken the most humane course of action possible.

Quite understandably, this issue invokes a highly emotional response. It is easy to be turned off by the seemingly radical nature of the interventions. When one looks deeper into the situation, however, a clearer picture emerges -- one in which the proper context can be established.

Lost in this conversation is the acknowledgment of the severity of Ashley's impairment. She suffers from an extreme form of cerebral palsy called static encephalopathy. This condition has permanently limited her cognitive capacity to that of a 3-month old infant. There is no hope for recovery and no amount of therapy as it currently exists will ever change this. Consequently, the notion that Ashley's parents are "keeping her a child forever" is utterly unfair; Ashley was doomed to a life of perpetual 'infanthood' from the very beginning.

What has changed, however, is that her body will now remain that of a child's. Ashley's parents have cogently described their rationale for each measure taken, so I won't reproduce them here. What I will say is that the quality of life for Ashley has improved because of these steps taken. Gone is the threat of institutionalization and third-party caregivers. Gone is the danger of injury to parent and Ashley caused by the heavy lifting of her adult body. And gone is the threat of sexual abuse and the onset of bedsores. The intent was to create a body and environment in which Ashley will experience the least amount of suffering given her extreme situation. I believe this has been achieved.

Ashley's parents have made the ultimate commitment and sacrifice. It is through these therapies that they will be able to continue to care for her well into the future and enjoy their 'pillow angel.' This was not a parental cop-out nor a desire for convenience.

I wish to clarify one thing. I have been quoted as saying, "If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity." Yes, this is what I wrote, but it is not the entire quote. I go on to say that, "Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

Where there might be some confusion or upset is in the suggestion that it is somehow acceptable to violate someone's dignity if they are not capable of experiencing it. This is not exactly what I am saying.

Rather, the concept of "human dignity" must be coupled with cognitive capacity if it is to have any meaning at all. Clearly this girl has dignity of some kind, but it does not diminish her dignity for decisions to be made on her behalf and for her to be denied the possibility of becoming a grown woman. She will never regret those decisions, and her quality of life will be much better because of the decision of her parents.

This entire episode is an excellent case study for what is meant by dignity and its relation to humane and merciful practices. If dignity means prohibiting those interventions that alleviate suffering, then clearly there is something profoundly wrong with what we mean by human dignity.

6 comments:

Anonymous said...

Hi George,

I just visited your post after reading this blog: http://sentientdevelopments.blogspot.com/ and noticed a discrepancy. You seem to suggest that the public opinion has been negative about what the parents did; however, the posts on this blog overwhelmingly suggest otherwise. Including this one that touched me the most:

To Ashley's parents,
My heart is with you. I have a 44 yr. old daughter that has gone through 22 surguries that I feel would have, could have been avoided if I'd done as you have done. The heartache, the pain that could have been avoided if I'd done as you have done. My daughter is now placed in a home but I feel I have failed her. I would give anything to have her with me and be able to be her caregiver. God bless you both and your child.
January 6, 2007 @ 18:48

George said...

Thank you for sharing this. I've been so inundated with condemnations that my perspective may be skewed. I certainly hope you're right.

Cheers,
George

Anonymous said...

Also check this survey: http://www.msnbc.msn.com/id/16485230/, I observed the percentage of support rise from 11% pre-LA Times article to more than 60% on January 5th.

Samantha said...

I notice that the 'posts on this blog overwhelmingly' have probably been moderated, and suggest that the opinions that people have voiced are probably negative and therefore are not aired.

I am the parent of two children with disability and I disagree entirely that dignity and human rights are dependent on cognition or awareness. I feel for parents of children with disability but not as much as I feel for the children themselves. Your comment about the inappropriateness of Ashley's cognition in relation to her body was inexcusable and a grievious slight to all persons with disability.

I suppose I am writing to myself, as I doubt this comment will be 'moderated'.

Samantha

George said...

Hi Samantha,

Thank you for raising the issue of moderation. FYI, I moderate the comments section of this site to prevent spam. So long as the comment is contextually appropriate, unabusive and non-trolling, it most certainly will get posted. I treat the comments section very seriously and feel it serves an important purpose, namely that of a public forum.

If, btw, you're finding that most posts are sympathetic to my perspective, please keep in mind that it may be a selection effect (ie my site draws a certain readership) and that recent polls are showing as much as a 60% approval rating for the 'Ashley Treatment.'

As for my remark about "the inappropriateness of Ashley's cognition in relation to her body," I am becoming increasingly sympathetic to this criticism. As an advocate of neurodiversity and morphological freedoms, I believe no one should prescribe a certain body to fit with a certain mind.

That said, the purpose of the comment was purely intended to add some perspective and relativity to Ashley's condition. Given another opportunity, I most certainly would have worded it better.

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