The Hastings report includes an article by Norman Fost, a behind the scenes man strongly influencing the Ashley debates...PRO g.a.. He is supremely arrogant, believing that doctors and hospitals should be above any sort of "third party influence" when making medical decisions.
I think the best thing to do when it comes to Fost, is to let him speak for himself. You will see what sort of a man he is and then you can make up your own mind. I am including quotes from both the article in the Hastings report "Offense to third Parties?" The Hasting Center Report > November-December 2010 (volume 40, number 6) and from another document by Christopher Mims, "The Ashley Case, Three Bioethicists Weigh In". This was done via email on January 5, 2007.
Here are a few golden nuggets from the email exchange:
Joel Frader, agreeing with Brosco and Feudtner, says that the measures used to limit her growth "miss the point," which is the lack of social support which might allow the family to care for her at home even if she grew to normal adult size; e.g., by providing mechanical devices to assist in lifting her. I must day I think this misses the point, which is to try to maximize Ashley's interests, or more precisely, to maximize the ratio of benefit to burden. (emphasis mine)
(The life of a child is boiled down to a benefit to burden ratio)
I also agree with the father's observation that having her size be more appropriate to her developmental level will make her less of a "freak" (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor, and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring.
(need I say more?)
It reminds of the scandal some years ago when it was discovered that some Cadillacs had Chevrolet engines. The owners hadn't noticed the problem until it was brought it to their attention. If children like Ashley could magically retain the appearance of an infant, they would not only be easier to care for in the physical sense, but the emotional reaction to them would probably be more favorable. This, of course, may be more of a problem for strangers than the parents, who seem wonderfully attached to her, with little difficulty seeing her as a beautiful, radiant, contributing member of their family.
(Again, the quote is appalling, but notice how surprised he seems about the parents being "wonderfully attached" to their daughter, etc.)
It's helpful to note the father's primary reason for removing her uterus: she doesn't need it. Since it's only purpose is procreation, which will clearly not be in her interest, it presents her with risks and burdens and no benefits.
(Under this rationale, Ashley neither needs her teeth, her legs nor her arms.)
The detailed account of the medical basis for the decisions in Ashley's case, as well as the careful ethical reasoning that they relied on, are well documented in the article by Gunther and Diekema, and the father's extraordinary detailed account of how and why they came to their conclusions. Whatever disagreements critics may have, it is not possible to say this decision was made casually or quickly, without careful consideration of the relevant facts and arguments.
(There were no disability advocates on this committee.)
From the Hasting's article:
That said, I believe too much deference has been given to the claims of third parties that their interests or preferences should be taken into account when individual families, in consultation with their physicians, are contemplating growth attenuation for children similar to Ashley.
(Here, Dr. Fost is talking about disability advocates and the LAW, which prohibits the sterilization of the disabled, without their consent.)
With the help of a federally authorized advocacy group with remarkable powers to subpoena hospital records, those who were offended by Ashley’s treatment succeeded in pressuring the hospital to prohibit its physicians from offering similar treatment to future patients without court approval.
(Again, this is the law...and the "advocacy group" WPAS, Washington Protection and Advocacy System, now Disability Rights Washington, pointed out the legal matters involved in Ashley's strerilization. I believe it is Fost that is offended here.)
This remarkable intrusion into private medical decisions lacks any plausible claim of harm to third parties other than emotional distress on becoming aware that one’s moral or political views are not shared by everyone. By this criterion, parents seeking cochlear implants for a deaf child, surgical correction of club feet or scoliosis, or a do-not-resuscitate order for a terminally ill child should be reminded that their decisions may be offensive to others and should be given literature on the reasons for the disagreement. Worse, many of those who opposed Ashley’s treatment argue that other treatments that involve changing the body should be prohibited without prior court approval.
(Do I need to say anything here, really?)
The report states that (disability advocates') “concerns and perspectives . . . should be considered during the decision-making process” by providing parents with “information summarizing arguments for and against this controversial intervention, or offering them copies of relevant publications.”
(Fost is opposed to this...he believes that it is possible to make an informed decision with a hospital ethics committee, a doctor and parents...none of whom have any understanding of disability. Remember, the medical community once "informed" parents that institutionalization, lobotomies, and enforced sterilization on their disabled children were the only, viable ways of dealing with them.)