TV Land

Last night Connie and I sat down to watch two programs back to back on CNN.  Each had something to do with the case of "Ashley" or "the Pillow Angel" as she is called by her parents.  I lack the journalistic talent that would afford me the opportunity to give readers a blow by blow description of the two television programs. I could probably go online somewhere and view each telecast on CNN's website.  I don't know much about video streaming on the internet.  Heck, I can't even post replies to comments I receive on this blog because the spam blocking feature that Typepad uses is entirely visual and it doesn't work with my screen reading software.

At any rate, both The "Paula Zahn Show" and "Larry King Live" respectively offered up additional analyses of the pillow angel case yesterday evening.  Paula Zahn featured a man who is the father of a profoundly disabled boy whose condition is very similar to Ashley's.  His son is significantly mentally impaired and has to be cared for around the clock.  The father who was featured in this segment is angry because he believes that many of the people who have raised alarms about the medical procedure that was performed on Ashley are, in his own words: "down and dirty" in the delivery or conduct of their criticism and he further went on to say that many people in the disability rights community who have voiced opposition to the medical procedure that Ashley's parents have condoned are "ridiculous”.

(Also featured on Paula Zahn, in a more positive light: Dream Mom and her Dear Son.  Dream Mom is currently up for an award: the 2006 Medical Weblog Awards under “Best Patient Blog”.  You can vote for her by reading her post about her CNN experience and following the link at the end.)

One of the principle difficulties with disability as a subject is that each speaker who engages with the topic must disavow the status of being a spokesperson for people with disabilities if he or she is thinking aright.  No one can speak with authority about all people with disabilities since each individual man, woman, or child will experience the "d" word and its personal consequences in highly individual ways.

When I talk to groups about disability I always allow that I do not represent "the blind" nor can I speak for those who have different kinds of impairments.  In essence I am a unique man whose experiences with blindness are curiously singular.  Those experiences might be similar to someone else's biography.  But then again this may not be the case.

Here's what I think can be said with some degree of certitude:

It's problematic to think of disability within the "medical model" since this form of thinking invariably reduces each person with a disability to the status of a solitary patient who can or cannot be cured.  One of the problems with the pillow angel case is that her parents' decision to perform surgery to keep their daughter small and manageable and perhaps comfortable is that the decision is discussed on television almost exclusively within the rhetorical vision of disability as a medical difficulty.  The "medical model" of disability frames each disabled patient as a physical site.  In this vision, the deformed or defective body is understood to be a location for medical intervention or transformation.  Accordingly, in "the medical model" of disability, every disabled body is seen as a singular medical problem that needs a cure.  Each person with a disability (hereafter referred to as "pwd") is removed from the concordant obligation to think of disability as a social condition.

The "wrinkle" is that as a category of human experience disability is also a social construction.  In effect, if the world was designed to assist pwds and their friends and families then disability wouldn't be an altogether terrifying prospect.  Why are pwds still significantly unemployed?  Why do they struggle with architectures and accommodations?  Why is "in home care" often such a nightmare?  What conditions in society create and enforce disability as a terrible sub-caste?  Why are individuals with disabilities assumed to be merely a product of their disabilities in ways that we would reject if race or gender were the circumstantial analogies?

I have no doubt that some of the pwds who are troubled about the implications of the "pillow angel" case have been vituperative in their comments about the decisions that were made by Ashley's parents.  Yet their decision to use hormones and surgery to keep their disabled daughter forever small is not without cultural significance.  Disability as a category is not merely a medical problem.  The realization that this is the case can cause discomfort for many people who still wish to cling to the medical model of disability.  It is much harder to think of disability as a complex intersection of social dynamics, many of which can illustrate how impoverished our society is when it comes to thinking about everything from medical ethics to employment to the evanescence of what we like to call "quality of life".  Let us face it: disability is a terrifying subject precisely because it remains such a devastating social problem both in the United States and around the world.

When Larry King came on we heard from some doctors (one of whom actually performed the procedure on Ashley) who collectively felt that Ashley's medical intervention was medically safe and entirely ethical.  I think that there is more than a little disagreement in the medical community about these assertions.  There is always disagreement within the medical community.  No sensible person would want to argue for conformity in medicine.  Otherwise we'd still be burning witches at the stake.  We would never have discovered a polio vaccine.  I can only reaffirm on this blog that in fact no one knows what the hormone therapy and surgery that Ashley has received will really mean to her physical well being.  Opinions differ within the medical establishment and in the meantime we should remember that it's chilling to people with disabilities when they are talked about as medical specimens.  I think this will always be chilling.  There is a terrible history in that closet.  Much of this history is still fresh.

In any case, one wouldn't know from either of last night's TV shows that disability studies is a substantive area of intellectual study at many of our nation's leading universities.  Both of these programs treated the subject as a medical matter and while they asked people with disabilities to join the discussion there was no acknowledgement that the medical model of disability is not a sufficient framework within which to understand the complexities of this matter.

S.K.

Comments

[Janet Gayes]

You articulated so many points so well. Lots to think about. Thank you.

[Bennie]

Steve, being the "angry man", I still stand by my comments. I think my point was made very clear in regards to the ethics those of you against The Ashley Treatment use to defend your opinion. In this particular case you have chosen particular phrases out of context to promote your opinion. Since your wife is an avid reader of my blog I invite you and your other readers to visit there as well. There you will find the entire transcript and will therefore read how and why I used those phrases.

Interesting how you used the same ploy the media uses to "sensationalize" a particular point of view.

[Hugh Hughes]

"Down and dirty" is SO not what this is all about; it is a sensationalization of a colloquialism dropped by Mr. Waddell. This story should be about Ashley, and who it is that will care for her as she ages. As I understand it, funding is limited, and the parents are limited in what they can physically handle. As far as Ashley is concerned, it is my understanding that what the doctors did was to lessen her pain and the pain (and not insubstantial expense) of her loving caregivers. As a cognitive entity, the medical opinion seems to be that she will have no understanding of the process, nor does she have (or ever will have) the ability to effect choice for herself. Doubtless, if she HAD the cognitive ability to choose, she would have chosen either death, or the same things her parents chose.

Of those of you who are so quick to criticize her parents, which of you would have been there to assist her parents both physically, emotionally, and economically to care for Ashley for the next "n" years? Let (s)he would really really REALLY be there cast the first stone.

By the way, fewer words would make your narrative more effective. It is a difficult skill to acquire, and a failure that I share with you.