Wednesday, September 25, 2013

No respite? Who is taking care of Ashley?

My focus of late with regard to the Ashley "treatment" has been to go over the primary material (whatever Ashley's parents have written) very carefully. It has been a revelation. Inconsistencies abound. Questionable statements are everywhere to be found. It is deeply distressing that families are being introduced to this "treatment" via the sloppy science and emotional blackmail put forth by the parents. I will be posting a detailed analysis about various topics introduced in the material, hoping to point out the deep flaws in thinking and information that exist in what the parents have put forth.

Below are a few quotes relating specifically to Ashley's care. I will look at them more carefully afterward.

Also, those that think a lift will do, simply have no clue. Any caregiver with direct experience can understand these points (

Ashley could not be moved as frequently or be as included in family life, and we would
not experience the joy of being an intact family as often  (

The main benefit of the height and weight reduction is that Ashley can be moved
considerably more often, which is extremely beneficial to her health and well being.
Currently, one person can carry Ashley, versus requiring two people or a hoisting harness
and ropes, should she have grown larger. (as above)

We are currently near the limits of our ability to lift Ashley at 65 pounds. Therefore, an
additional 50 pounds would make all the difference in our capacity to move her.
Furthermore, other than her Mom and Dad the only additional caregivers entrusted to
Ashley’s care are her two Grandmothers, who find Ashley’s weight even more difficult to
manage. We tried hard and found it impossible to find qualified, trustworthy, and
affordable care providers. (as above)

The quotes above relate directly to Ashley's physical care, specifically to the issue of lifting. Based on these quotes, one can surmise that a) the family does not have a patient lift in the house and b) that there are no caregivers outside of the immediate family and the grandmothers.

Here is what I wonder about:

Based on this information, prior to attenuating Ashley's growth, the family was "near the limits" of being able to lift her at 65 lbs. In the Guardian interview, the father noted that Ashley was, post g.a., 75lbs
* Are her caregivers, namely, Mom, Dad and grandmothers, still able to lift her?
* How long before the grandmothers, whom we can assume are in their 60's at the very least and who were already said to be having trouble lifting Ashley at 65lbs, will be unable to lift her because of their age? (Here too, I wonder where the grand fathers are, but it is possible that they are not alive).

* Has the family yet had to purchase the dreaded patient lift in order to transfer Ashley? 
* How do they bathe Ashley? My own disabled daughter weighs about the same as Ashley does and there is no way that I would ever put her in tub without the aid of a lift or a second person. It is possible, however, that they bed bath her, as I have done over the years with my daughter.

Now, here are a few other things that I find suspicious.

Parents categorically state that only they and the grand mothers are "entrusted" to care for Ashley and that no acceptable outside help could be found. 
*So, assuming the father works, then Ashley's mom is a stay-at-home mom and her ONLY respite is her mom and her mother-in-law?
* How often are these women called upon to assist in Ashley's care? 
* What will happen when they can no longer care for Ashley due to their age? That leaves Ashley's mom to care for her almost 24/7. Will they suddenly find acceptable help then?
* Do these parents take holidays on their own? If so, are the grand mothers caring for Ashley while they are away? 
* One quote implies that sometimes the family is not "intact", meaning they carry on with activities without Ashley. Are the grandmothers watching Ashley while the rest of the family is out?
* If the family takes holidays as a group, "intact", do the grand mothers come along also or does Ashley's mom do all the care giving?

What I am saying here is that I find it hard to believe that there are NO other care givers for Ashley besides the mother and the grand mothers, this many years into her life. It would presume that the grand mothers make themselves available on a nearly daily basis, or barring that, the mother is on her own a great deal with Ashley.  I suspect there is a certain fudging of the facts here. It is an entirely unrealistic scenario. Or that might explain why Ashley was always so bored...

On a final note: one quote refers to the "main benefit of the height and weight reduction" caused by g.a. Let's be clear here that g.a. does NOT guarantee weight reduction. It is possible, of course, for a person to be very small and quite heavy, even obese. Ashley's weight is determined solely by her caloric intake. How is this being assessed? Is Ashley getting enough nutrition to satisfy her hunger, or are the artificial weight restrictions placed upon her by her parents "forcing" them to reduce her caloric intake for the sake of weight alone?

To be effective, decisions to limit linear growth should be matched by commitment to limit calories sufficiently to maintain a relatively lean body habitus. (Growth-Attenuation Therapy: Principles for Practice, PEDIATRICS Vol. 123 No. 6 pp. 1556 -1561)

In conclusion, the quote above is particularly distressing, but when read carefully, all of what is being intimated about Ashley's care is suspect.

Monday, September 2, 2013

Eva Kittay on the Ashley "Treatment"

Below, I have copy-pasted a letter written by Eva Kittay from International Journal of Feminist Approaches to Bioethics (HERE), because these things disappear over time in the land of the 'net. Click on the link as to why it was written and to see the piece in it's entirety (I omitted the intro that detailed the Ashley "treatment"). As I mentioned earlier, in my view, Kittay is the pre-eminent anti-Ashley "treatment" writer there is to date. This letter is a good summation of her more complete work, to which I have a link in my side bar.

I am the parent of an adult with severe cognitive disability, and also a philosopher who has written on the Ashley X case.* Peter Singer published a response (March 16th, 2012) to the Guardian article, ‘Ashley treatment’ on the rise amid concerns from disability rights groups” by Ed Pilkington and Karen McVeigh (March 15th).  Peter Singer is a fine philosopher and has made extremely important contributions in the areas of animal rights and poverty.  His work on people with disability is less distinguished and is consistently disputed by people who live with the conditions of which he speaks.  I am astonished that people who know as little about disability as Professor Singer does are repeatedly invited to pontificate on the subject.  I am also perplexed when I hear the debate about Ashley X framed as one between cognitively able disability rights activists and the parents of children with cognitive disability.  I understand that many parents have contacted the parents of Ashley but, outside of my participation in the Seattle Children Hospital workshop discussing growth attenuation (to which SE Smith refers), I have yet to meet a single parent of very severely and profoundly affected individuals who has any sympathy for the procedure.
Singer begins by dismissing the attack on the Ashley procedure on the grounds that it is “unnatural,” pointing out that all medical procedures are unnatural.  But surely not all medical interventions are justifiable.  Some, such as lobotomies and forced sterilizations, we clearly recognize to be illegitimate.  The charge that the Ashley treatment is “unnatural” is at bottom, I believe, a protest against the purely instrumental view of our body that the procedure suggests.  Its proponents appear to value height for reasons that would not be of interest to Ashley, such as the higher income or status taller people attain.  But in fact we value our children growing because growth is normally a sign of thriving, and such thriving is part of a flourishing life.  We stand up my daughter Sesha, who is now 43, and are pleased that she is a tad taller than me.  Why?  Because we do.  Full stop.  It needs no further justification.  Similarly having breasts are not just to sexually attract a male.  They are part of what it is to be female and a being with sexuality.  Do we really know that Ashley will never have a sense of herself as a sexual being?  After all the hormones continue to course through her body.  We have no access to or knowledge of the subjective life of people with the disabilities that Ashley has.  How can we presume to act on the supposition that we do?
Consider another supposition at play: that Ashley “will always have the mind of a baby.”  My daughter, who I will guess is no more cognitively able than Ashley, is now an adult woman.  Yet over the years, she has come to focus on different things and her tastes have changed.  She now enjoys listening to Michael Jackson, Bob Dylan, Beethoven, and Louis Armstrong, and no longer Barney or Elmo.  She, as well her equally disabled housemates, has demonstrated profound sorrow when told of the death of a beloved family member and much else that far exceeds what a baby or young child can comprehend.  They may not be able to function beyond the level of a year-old child, but their understanding far exceeds any such age limitations.  Ashley will not remain at the “mental age of a three-month old” no matter how impaired her cognition is.  We develop in many ways that are not coordinated with a set of tasks that we can or cannot do.  The brain, no matter how impaired, remains a dynamic organ, not a static one.
The “Ashley treatment” is defended in the case of folks like Ashley because it is limited to those who are severely cognitively impaired, and that is because their care is so demanding and their families hope to keep them close.   But there are many sorts of disabilities that make people extremely difficult to care for. The Ashley Treatment is the only medical intervention for which severe cognitive disability is the sole and necessary indication, even though there are many populations who make similar demands on caregivers.  The most plausible explanation for this exceptional treatment is that those who believe the treatment is justifiable but only in the case of this population is that this is the only population that “will never know the difference anyway.”  But why should we think that they will not know the difference? How can we be so sure? And what else can we do to this population because “they will never know the difference anyway?”  Why bother to shower these individuals separately, rather than march them naked to showers and hose them off?  (This was standard procedure in State institutions such as Letchworth Village and Willowbrook.)  Why keep them in cages which we can move around from room to room.  That too would allow us to keep them close to the family?  There is a long list of horrors that have been justified on the assumption that these folks “don’t know the difference anyway.”  Do we want to go down that road again?
Finally, the justification that this procedure allows people like Ashley to be better cared for and cared for by their families, is far more appropriately addressed by providing families with the means by which to care for their children at home as long as it serves the disabled person and the family well, and to provide safe, caring and enriching environments for them as they mature into adults.   As Dr. Jeffrey Brosco has put it, the Ashley treatment fails to do “justice to the scope of the problem.”  Again as Brosco points out, we don’t even know if size and good care are correlated, much less causally related.
The Ashley case should herald in a movement to secure better services, better equipment, and more attention to the needs of severely disabled individuals and the families who care for them.  Tragically our society fails to sufficiently reduce the unjust burden of their care and so impels the Ashley Treatment copycats to shrink their children instead.

*My work on the subject of Ashley X includes the following publications: “Forever Small: The Strange Case of Ashley X”, Hypatia, Summer 2011 Volume 26, Issue, 610-31; “Navigating Growth Attenuation in Children with Profound Disabilities: Children’s Interests, Family Decision-Making, and Community Concerns” Co-authored as one of the members of the Seattle Growth Attenuation & Ethics Working Group. Hastings Center Report, November 2010; “’They Don’t Know the Difference Anyway’: Dissenting from the Seattle Growth Attenuation and Ethics Working Group’s Compromise Position”, Hastings Center Report, November 2010; Whose Convenience? Whose Truth? A Comment on Peter Singer’s ‘A Convenient Truth’”
(with Jeffrey Kittay) The Hastings Center Bioethics Forum, Wednesday, February 28, 2007.