No More Ashley Treatments

Background:
The “Ashley treatment” (as Ashley’s parents and doctors have dubbed it) is a combination of hormone treatments and surgical procedures that Ashley, then a six-year old girl with profound cognitive and physical disabilities, underwent with the aim of attenuating the growth and inhibiting aspects of sexual development.  The procedure involves treatment with massive does of estrogen, and the removal of breast buds and uterus (leaving ovaries in place).   The parents requested these procedures and the doctors consented on the grounds that keeping Ashley small, given her profound disabilities, would allow the family to continue to care for Ashley at home and involve her in family activities.  The treatment raised a great deal of concern and disapproval but Ashley’s parents and physicians defended the treatment and even encouraged other parents because they believed that it would help other parents who were struggling with the care of children like Ashley (who they call their “pillow angel”).  This has reemerged as an issue because of reports, published in the Guardian, that the procedure is being carried out in the United Kingdom.  Peter Singer was invited to respond with an article in the Guardian.  The following is a letter I wrote to the editors, which they never published.  I am delighted to have a forum to publish the response, as well as express my regret that the only voice that was given expression was that of Singer.

The Unpublished Letter:
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 16, 2012) to the Guardian article, an ‘Ashley treatment’ on the rise amid concerns from disability rights groups” by Ed Pilkington and Karen McVeigh (March 15).  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 amp; 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.

Share Button

Comments

No More Ashley Treatments — 9 Comments

  1. Thank you for this. I too am the parent of a now adult lady with severe intellectual and physical disabilities. You are dead on…about everything.

    • Thank you. It means a lot to hear this from other parents. I have heard growth attenuation defended only once by a parent of a disabled child. No other parent I have discussed this with has seen this procedure as acceptable.

  2. Prof Kittay, thank you for sharing this insightful piece. I too will share it with my medical students. I agree with you that the debate boils down to access to resources. Ideally families would be provided 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.” If, how and when this will happen is an open question.

  3. Pingback: Bodily Autonomy and Disability | PhiloPsycho

  4. I thank you for this blog, but as a parent of a profoundly disabled child I am exercising my given right to disagree 100%. I believe that there is not a one size fits all solution and would ask for a respectful and compassionate consideration on a case by case basis.

  5. Pingback: Sexuality: Now | Eugenics to Newgenics

  6. Pingback: “What My Son’s Disabilities Taught Me About ‘Having It All’” | IJFAB Blog

  7. Very interesting. I find this and your other work on Ashley very moving. I especially love this from your letter posted here: “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.”

Leave a Reply

Your email address will not be published. Required fields are marked *