Ashley X parents speak out and defend their actions

It's been a year since the Ashley X story hit prime time. This is the case in which the parents of a severely disabled child submitted their daughter to a hysterectomy, breast surgery and drugs to keep the girl small so that they could continue to care for her. The treatment was performed back in 2004.

Despite her age, Ashley has the mental ability of a three-month-old baby and cannot walk or talk.

This story is back in the news as Ashley's parents recently spoke with CNN to once again defend their actions and share their experience with other families.

Ashley, who is now 10 years old, is 4 feet 5 inches tall and 63 pounds; this will likely be as big as she will ever get. The so-called Ashley Treatment permanently closed her growth plates and took more than a foot off her anticipated height

According to her parents, "Ashley did not grow in height or weight in the last year, she will always be flat-chested, and she will never suffer any menstrual pain, cramps or bleeding."

They remain convinced that what they did for Ashley is the most loving choice they could have made for their daughter and want that for other disabled children. "We feel that if our time and effort ended up helping a single pillow angel... then it is worthwhile."

For more on this story and my own perspectives:
Helping Families Care for the Helpless
Ashley X story hitting prime time
BBC video
Certain minds and certain bodies
Ashley X doctor commits suicide

Ashley X doctor commits suicide

Shocking news today: Daniel Gunther, the doctor at the center of the Ashley X controversy, has committed suicide. From MSNBC:

Dr. Daniel F. Gunther died from toxic asphyxia from inhaling car exhaust, said Greg Hewett of the King County Medical Examiner's Office. His time of death was listed as 9:30 p.m. on Sept. 30. The 49-year-old was a pediatric endocrinologist at Children's Hospital and Regional Medical Center in Seattle and an associate professor of pediatrics at the University of Washington.

In 2004, Gunther and his colleague Dr. Douglas S. Diekema performed a hysterectomy, removed the breast tissue and started hormone treatment to permanently halt the growth of a 6-year-old disabled girl so her parents could continue to care for her at home. The doctors wrote about the procedure, which was performed at Children's Hospital, in the October 2006 issue of the Archives of Pediatrics & Adolescent Medicine.

News of the procedure last fall sparked debate about the ethics of the treatment both online and in the medical community. One poster on MSNBC.com's message boards called the procedure "offensive if not perverse." Others supported the decision: " I feel like everything [the parents] are doing is intended to be in the best interest of their child."

This is particularly upsetting for me, not just because I supported Gunther during the controversy, but because of the possibility that his suicide was wrought by undue pressure exacted on him by overzealous and vocal disability groups.

Back in January when the Ashley controversy was at its peak, Dr. Gunther joined the Institute for Ethics and Emerging Technologies site. In reference to my article, "Helping Families Care for the Helpless," he wrote to us:

[T]he article on the IEET site was one of the first sane and rational responses I came across. All of us here appreciate your support. I am hoping that in time more rational voices will increasingly make themselves heard, while the more reactionary ones fade away.

Evidently this didn't happen. What a shame.

**ADDENDUM: 12-Oct-07
According to this Seattle Times article, friends and family of Dr. Gunther insist that the suicide was not fueled by the Ashley controversy.

Certain minds and certain bodies

I'm the kind of person who learns by doing. This blog is largely a place for me to think out loud as I figure things out and formulate my arguments and opinions. It's not uncommon for me to change my mind about some things, or to be persuaded by someone else's arguments.

I also learn from my mistakes. I don't like having to learn that way, of course -- who does? But the Buddhist in me often welcomes these types of negative experiences; I know full well that I'll find something of value and grow from the experience.

Which brings me to the topic of this post, which has to do with one of the arguments I made in defense of the Ashley Treatment. In my article, Helping Families Care for the Helpless, I stated,

"...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."

This quote was strewn across the media soon after the Ashley X story broke. While it made for a provocative sound bite, I have since changed my mind about this particular argument.

Now, that said, I want to reiterate that I am still absolutely in support of the Ashley Treatment; what I am retracting here is this specific line of reasoning.

It is inaccurate to suggest that certain minds go with certain bodies. As a proponent of neurodiversity and morphological freedoms, I am in favour of the notion that different minds can be mixed and matched with different bodies. Moreover, it is arbitrary and inappropriate to suggest that that a particular psychological state 'belongs' with a particular morphology. Thus, the suggestion that Ashley's body should be modified such that it better 'matches' her cognitive state (which is that of a 3-month old) is unjustified.

Other arguments in support of the Ashley Treatment, such as increased levels of comfort, safety and health, are clearly more relevant to the issue, as are such factors as personhood considerations and caregivers' rights.

Thanks go out to Anne Corwin and James Hughes for engaging me in this discussion.

Peter Singer on the 'Ashley Treatment'

Influential bioethicist Peter Singer has waded into the Ashley X debate and, as usual, is not afraid to plunge head-first into controversy. In addition to the now-familiar arguments in favour of the so-called Ashley Treatment, Singer questions the whole issue of 'dignity' and how it applies to this debate. He goes even further by posing the difficult but necessary question of dignity and the value of non-human persons.

Here's an excerpt from Singer's NYT article, A Convenient Truth:

Finally, there is the issue of treating Ashley with dignity. A Los Angeles Times report on Ashley’s treatment began: “This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.” Her parents write in their blog that Ashley will have more dignity in a body that is healthier and more suited to her state of development, while their critics see her treatment as a violation of her dignity.

But we should reject the premise of this debate. As a parent and grandparent, I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.

Here’s where things get philosophically interesting. We are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more advanced mental level than human infants. Just making that comparison provokes outrage in some quarters. But why should dignity always go together with species membership, no matter what the characteristics of the individual may be?

What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.