• Enter search term(s):


Enter your email address to subscribe to this blog and receive notifications of new posts by email.



Recent Posts

Detailed report on “Ashley treatment” (growth attenuation, etc.) symposium @ University of Washington, May 16

Date: May 17, 2007

Yesterday I attended this one-day symposium on the so-called “Ashley treatment” at University of Washington’s William Gates School of Law. “Ashley” is a nine year old girl with severe developmental disabilities (her mental capacity is said to be equivalent to average three-month old) and is also non-ambulatory, who at the time she was six, had her growth hormonally attenuated (stopped), and uterus and breast buds removed at Seattle Children’s Hospital (SCH) so that she would remain childlike appearance for the rest of her life. The treatment was justified as “in the best interest of the child,” as parents are able to take better care of their daughter when she is smaller and lighter without having to rely on outsiders or institutionalizing her.

The case was reported in Archives of Pediatric and Adolescent Medicine last October, and in this past January it became a major media story with her parents starting a blog about it to “help other parents” who have children in similar predicament to “Ashley.” Then this past week, Washington Protection & Advocacy System (now Disability Rights Washington) issued an investigative report that concluded that the hospital violated the anti-sterilization law by performing hysterectomy on a child with developmental disability without a court order. The hospital acknowledged the error, and went into an agreement with WPAS to create further checks for similar cases in the future, and also to add representatives of disability rights movement to its ethical review committee.

That brings us to the symposium, which took place on May 16. It began with a welcome/introduction by Paul Steven Miller (UW, Law & Disability Studies)and Benjamin Wilfond (SCH). Miller discussed how contentious this “growth attenuation” treatment is, while reminding us that we all come from the desire to advocate for what’s best for children (which turns out to be far too simplistic, as later panelists would discuss). Wilfond from the Treuman Katz Center for Pediatric Bioethics at SCH gave a background information on what bioethics is, and also discussed what WPAS’ report found. He stated that this symposium was to be the beginning of the conversation, not an end, and I certainly hope that the conversation would continue.

Next, Jeffrey Brosco of University of Miami (Pediatrics) gave an overview of the history of medicine from the ancient Greece and Rome to the 21st century. Brosco is the author of a review article published along with the original paper on the “Ashley treatment,” in which he chastised it as “ill advised,” but for someone with a Ph.D in History of Science his perspective on the history of medicine seemed rather linear and simplistic. He painted the history of medicine, especially since the 1950s on, as that of the continuous progress, enlightenment and empowerment, and repeatedly insisted that the disability rights movement has already “won”–which seems to sidesteps why disability activists are still extremely concerned and fearful about the “Ashley treatment.” It certainly didn’t feel reassuring when he stated that growth attenuation could be applicable to up to 20,000 children per year.

Brosco did raise an interesting point about the concept of technological imperative in the contemporary medicine: ever since the invention of antibiotics, vaccines and surgery, physicians have become providers of miraculous technologies. Our society has come to rely on and to overestimate what medical technologies can do for them, and the use of hormone treatment to control one’s final height (in “Ashley’s” case, as well as in the growth attenuation of tall girls in the mid 20th century and the human growth hormone treatment of short boys today) is part of that tendency. I was annoyed by the way Brosco kept referring to human rights abuse by medicine (e.g. Tuskegee experiment) in the past tense, neglecting similar abuses in U.S. prisons, Third World, and elsewhere. It was unfortunate, considering the fact that he seemed to “get” some of the politics of the disability rights movement, such as our critiques of telethons to raise money to “cure” disabilities.

He did express that “growth attenuation should not be our society’s solution” to the lack of public, at-home support for people with disabilities and their families, but questioned whether or not it had to be prohibited. In the end, he asked the audience what restrictions there should be to safeguard the rights of children with disabilities, while addressing the need for families that have to take care of their disabled children.

The next panel was a specific discussion about the Seattle Children’s Hospital and its treatment of “Ashley” (the rest of the symposium addressed growth attenuation treatment in more general terms). Doug Diekema (SCH), who was appointed as the “ethical counsel” for “Ashley’s” case, spoke first (and he said “I happened to be the ethical counsel who drew the lucky card”–which irritated me). It was pretty much the same as what he’d written in the medical journal paper from last October, but there were some interesting (and telling) statements. For example, in discussing the proceeding of the ethics committee that approved the three-part treatment, he explained that doctors initially responded “no way” to parents’ request, but after hearing “Ashley’s” father’s explanation, the 40-member committee came around, arriving to consensus to allow the treatment as “in the best interest of the child.” He stated that “for everbody in the room, there was no question that Ashley responded and recognized her parents,” as if that makes it any more ethical to sterilize her.

Diekema stated that the “sole purpose” of the treatment was to make “Ashley’s” life better, but his examples were questionable. For example, he stated that the involvement of third-party caregivers would “change the dynamic” of family relations to the detriment of Ashley’s quality of life, but it seems to me that “Ashley” is unlikely to experience the “change of family dynamic” as detrimental. It is the parents who would need to make adjustments if they were to receive outside help in taking care of their child, but somehow Diekema spoke as if it was all about “Ashley’s” convenience. Likewise, he stated that parents “worried about Ashley’s reaction” to menstruation if she didn’t receive hysterectomy, but it appears that parents are concerned about their own reaction to seeing their child-size daughter menstruating. That’s not to say (not necessarily, at least) that parents’ concerns aren’t valid–I’m just concerned that the notion of “the child’s best interest” may be masking the true motivation for requesting treatment.

Diekema also said that there is no such thing as “Ashley treatment”–it’s just a term parents have created, but he doesn’t feel that it makes sense to combine three very distinct procedures (growth attenuation, hysterectomy, and removal of breast buds) and give it a unifying name. That’s good to know, since the term “Ashley treatment” or “Ashley’s treatment” is all over the news media. But I was curious about the fact that Diekema left out from his medical journal paper the fact that “Ashley’s” breast buds were removed. Perhaps he feels that the argument for breast buds removal–that “Ashley” must be protected from growing breasts because it would be too uncomfortable for her own sake–is weaker?

Emily Rogers of Arc of Washington State spoke next, and gave a pretty good disability activist perspective on this issue. She said that she was shocked to hear that this sort of treatment was even being considered at all, and asked “what’s next?” Rogers, along with Corinna Fale of People First spoke about the fear of “slippery slope”–that is, once they legitimatize “Ashley treatment,” it might lead to more invasive treatment for less severely disabled people would follow. They viewed growth attenuation as a threat to the dignity of people with disabilities because dignity infers having a place in the society, and the growth attenuation treatment basically implies that there is no place for people like “Ashley” unless their bodies are modified to make it more convenient for the society. Rogers also stated that “no amount of medicine alleviates all problems,” as a way to critique the technological imperative that Brosco spoke of earlier.

Corinna Fale added that when she first learned about what was done to “Ashley,” she felt devastated not only as a person living with disability, but also as a woman, as the removal of breasts and uterus obviously had gendered aspect to it. She spoke about her desire to eventually give birth to a child, and stated that it hurt her to think that the right to do so was taken from Ashley” regardless of whether or not it would have been practical or possible for her to exercise that right. She further stated that the advocacy movement for people with disabilities might have been pushed backward by this case.

The chair of SCH’s ethics committee, David Woodrum also spoke on the panel, which turned out to be very telling of how the ethics committee didn’t work. Insisting that he continues to believe that the benefits to “Ashley” outweighed any risks or negative consequences, he stated that the only problem with what had happened was the process (i.e. failure to receive a court order before performing hysterectomy). But as he acknowledged the “problem” with the process, he made it obvious to everyone his discontent with and disregard for the idea of judicial oversight: “I’m a parent advocate, not judge advocate or lawyer advocate,” he said, not even pretending to conceal hostility toward the minimum legal safeguard for the rights of people with disabilities that was established after a long history of eugenics.

Woodrum also threw out disability rights activists’ concerns by stating that he didn’t believe in the concept of slippery slope because “Ashley’s treatment is specific to that case alone, and each case should be decided according to specifics.” True, activists sometimes become too alarmist when they invoke “slippery slope” argument, a trajectory I wish to avoid in my activism (and I’m sick of hearing “first they came for the communists…” cliché), but the threat Rogers and Fale spoke out about is real in the lives of people with disabilities and I was offended by how Woodrum would so summarily and casually dismissed their concerns, and acted as if the activists and self-advocates were stupid. While Rogers and Fale remained respectful toward doctors even as they intensely disagree on the issues, I felt that Diekema, Woodrum, and some others were outright disrespectful and belittling toward activists.

In response to Fale’s feminist critique, Woodrum reported that “feminist-minded” women on the ethics committee were actually more approving of the idea of hysterectomy and breast removal for “Ashley” than the men. “More men felt that breasts should be preserved,” he said jokingly. In the questions and answers session, I pointed out that this could easily be explained by the fact that women are the primary caretakers in our society and that women on the committee might have identified with the hardship faced by “Ashley’s” mom more readily than the men did. It also shows the inability of non-disabled feminists to identify with women with disabilities who are constantly de-sexualized in the mainstream of the society, and yet are facing increased risk of being sexually assaulted or exploited.

While holding the microphone, I also challenged Woodrum’s statement that he and other physicians were “parents’ advocates,” pointing out that their obligation was supposed to be first and foremost to advocate for the patients themselves. And yet, the history is rife with examples of parents and doctors working together to force unwanted treatment or institutionalization on people with disabilities. I argued that if doctors know themselves to be often acting in the interest of parents rather than the patients, it would be all the more reason we should institute judicial review for hysterectomies and other invasive, irreversible treatment for people with disabilities, in which the patient is represented by a guardian ad litem.

The next panel, which was titled “Philosophical Perspectives About Growth Attenuation” was more interesting. First, disability theorist and philosopher Anita Silvers (San Francisco State University) discussed how “best interest” argument becomes a diversion from real issues in the absence of social justice considerations. She used two hypothetical examples, which I reproduce here in entirety:

Case 1: Baby Betty is a famous child movie star (and bad actress) who is the sole support of her irresponsible parents. She has a health condition that makes pregnancy very dangerous for her. Growth attenuation, and removal of breast buds, is overwhelmingly in her economic and social interest, as they will permit her to continue looking like a child and securing roles as such, which is the extent of her ability as a thespian. She should not bear children. She will not need to breastfeed. Growth attenuation is in her interest as a means of maintaining necessary care, for she is protected from her parents’ irresponsibility only because her childish appeal attaches her to other adults, for example, her agent.

Case 2: Iolanthe is a child with quadriplegia. She requires straps to keep her in her wheelchair. She will need attendant care all her life. To live outside an institution independently–for example, to attend the University of Washington–she will need to hire and supervise twenty-four hour a day attendant care. And the easier and more attractive she is to care for, the easier it will be to recruit attendants. Growth attenuation is in her interest as a means of maintaining necessary care, for her chances of securing sufficient good attendants is increased by her being easy to lift.

Aside from the fact that Iolanthe’s parents also appear to be irresponsible to give their daughter such an unusual name, each case complicates the notion of “the child’s best interest.” While in each of these cases, growth attenuation appears to give an advantageous edge, I cannot imagine that the ethics committee would approve “growth attenuation” for either of the cases. Silvers asks: what’s the difference between “Ashley” and the other two? At the very least, Silvers’ examples complicate the “best interest” argument.

For Silvers, the “Ashley treatment” implies that, in her own words, “to safely survive, disabled people must appear what they are not”–which might be the reality in which we live in, but still problematic. She further discussed that the “Ashley treatment” is distinct even from other ways in which children’s bodies are modified to meet societal expectations, such as limb-lengthening surgeries, cleft lip repair, and craniofacial surgeries in that unlike these treatments which are intended to make bodies become more species-typical, the “Ashley treatment” actually make the child less typical or normative. However, I have a couple of reservations about this statement: first, at the factual level, “Ashley’s” parents do seem to think that short statue is more “typical” to her intellectual level, so in that sense the intent of the treatment is just as much “normalizing” as the surgeries Silvers mention. Second, more importantly, I don’t like the inference that “normalizing” surgeries, those that make bodies closer to species-typical, are less ethically problematic than otherwise. I don’t necessarily think that all of these surgeries are wrong, but it’s not because they make bodies “more normal.”

She did raise an important point, though, which is that “best interest” approach is often a problem of framing. Performing growth attenuation vs. throwing people into inferior care at institutions is a false choice. Once we accept growth attenuation as in the “best interest of the child” and therefore acceptable, what is to stop growth attenuation for children under state custody or in institutions? University of Washington philosopher Sara Goering also points out that it is insufficient to address just what child’s interests are, but we need to explore how that interest came to be. It is only because of lack of adequate at-home care and community support for families with children with severe disabilities that parents feel compelled to pursue “growth attenuation,” she suggested.

Goering also addresses various ways in which the concept of “dignity” is being used in this debate: disability activists arguing that the respect for “Ashley’s” basic human dignity infers that she is allowed to grow naturally with her body intact, while parents quoting George Dvorsky of the Institute for Ethics and Emerging Technologies’ statement: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demaeaning or undignified to humanity in general… [The growth attenuation] 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.” (To which, I’m tempted to respond that I find Dvorsky’s argument even more grotesque, but I’d like to move beyond calling people grotesque.)

Goering suggests that dignity might not be a useful concept here, as it’s either reducible to another principle or too broad to mean anything in any specific context. You can see this problem in the debate over “death with dignity” (passive and/or active euthanasia), where both sides of the controversy claim “dignity” as the main principle for their respective positions. Also, the concept of “dignity” has historically excluded people with developmental disabilities, as evidenced by Dvorsky’s comment or by that of Peter Singer’s, which goes: “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.” Instead of “dignity,” Goering suggests framing the issue around “integrity”–i.e. respect for the wholeness of life. “Ashley” is not a “perpetual child” that her parents make her out to be (they even came up with the term “pillow angel,” which nauseates me), even if her mental capacity was similar to that of a three-month old.

During questions and answers, David Woodrum from the earlier panel came up to protest Silvers’ examples as irrelevant to the discussion about “Ashley’s” treatment. He argued that it was simply not true to suggest that “best interest of the child” was the overreaching principle in deciding to approve the growth attenuation: the fact that “Ashley’s” mental capacity was not expected to surpass that of a typical six month old, and that she was not ambulatory, were key in approving the treatment, so Betty’s and Iolanthe’s examples are completely irrelevant. But that brings up an interesting question: if it weren’t for the “best interest” standard, how did he determine that a non-ambulatory child with the mental capacity typical of a three month old deserved a different standard of bioethical consideration than someone who was intellectually more developed, or someone who could walk? That sounds like a discrimination.

After lunch, the forth panel was convened, this time about balancing various interests that enter into the equation. Unfortunately, two of the panelists–Joanne O’Neill from Arc of King County, who is a mother of a son with developmental disability and also a registered nurse, and Ted Carter, a pulmologist from SCH–didn’t really address any of that. They both focused on what parents of disabled children want and how doctors work along with them to achieve that. The title of Carter’s PowerPoint presentation is telling: “Balancing Interests: Parental Decision-Making, Doctors, and the Community”–where are the patients/children, or people with disabilities? He further spoke about improving “the quality of life of the family” as a goal for medical intervention, which is not a bad thing, but the concern for the quality of life for the patient was frighteningly absent.

That was made up with the yet another great presentation by Alice Dreger, and I’m not saying that simply because she is a friend of the intersex movement. She introduced herself as someone who has made a career out of questioning body-altering medical treatment of children with bodies that challenge society’s idea of normal, such as children with intersex conditions (disorders of sex development), conjoined twins, and others, with the slogan “why not change minds, not bodies?” She continues to feel that parents’ desire to modify their children’s bodies is often misguided, but said that the experience of being a parent complicated her thinking.

One of the factors that make ethical judgment difficult in “Ashley treatment” is the fact that “Ashley” or anyone who is similar to her are unable to ever tell us what they thought about the treatment after the fact. In the case of intersex surgeries, or cleft lip surgeries even, it’s possible to find adults who have experienced them as children and ask them what they think about it, which should give us better guidelines as to what treatment might be ethically warranted. But in this particular case, we will never benefit from hearing “Ashley’s” own perspective.

Dreger’s main point in her presentation, as in her essay, “Ashley and the Dangerous Myth of the Selfless Parent,” is that caregivers’ needs are a legitimate concern that should not be concealed. She points out the pattern of disingenuity and dishonesty in “Ashley’s” and other severely disabled children’s parents’ writings such as the statement that having “Ashley” is “a blessing and not a burden.” Another parent, whose son has a similar condition wrote, “taking care of him is difficult, but it is never a burden.” But how realistic is it for parents to only view their child, whether disabled or not, as a blessing, and never a burden? Being a parent herself, Dreger spoke about how she sometimes fantasizes about a switch that could be installed on her child and turned off at night–which is perfectly understandable, legitimate fantasy for a parent in our society, even though it would be technologically infeasible and ethically wrong for doctors to surgically install such a contraption.

In another instance, “Ashley’s” parents wrote: “A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life.” I’m sure that the parents are concerned about “Ashley’s” quality of life very much, but it’s just not believable to say that caregivers’ quality of life did not factor into the decision. Such expression of complete selflessness is common in the writings of “Ashley’s” parents and others who stand in line to demand “Ashley treatment” for their children, and it reflects the society’s unrealistic idealization of the completely selfless, devoted mother. Dreger suggests that it is more healthy to recognize and express parents’ and caregivers’ selfish–and sometimes legitimate–motives for wanting certain things.

Of course, Dreger is not trying to justify “Ashley treatment” on the basis of parents’ needs; rather, she is trying to untangle parents’ needs from children’s, in hope that some of the parents’ needs can be met socially (e.g. more help for families with children with disabilities) rather than by modifying children’s bodies. If we were to find a proper balance between children’s fundamental right to bodily integrity and parents’ legitimate needs and desires as caregivers, we need parents’ needs to be identified as such. But I fear that some people misinterpreted her presentation, thinking that she was endorsing the modification of children’s bodies for parents’ selfish reasons (that seemed to be the interpretation of Denise Dudzinski, who summarized the symposium at the closing).

Dreger also raised an interesting question: since “Ashley” would never ever walk on her own legs, and they add extra weight that caregivers must lift, what if someone were to propose cutting her legs off? Certainly, she will receive better care when she is lighter and easier to take care of, according to the parents’ and doctors’ reasoning, so it must be in “Ashley’s interest. Of course, actual amputation would involve pain and other risks, but are they the only reasons for not approving the amputation? Or, is there more fundamental reason why her legs should not be cut off, and if so why is cutting breasts and uterus off any different? Most people would intuitively agree that leg amputation is more problematic than hysterectomy and breast removal, but perhaps that is based on the widely held prejudice toward and disgust at people who had their legs amputated, as well as the society’s tolerance for violations of women’s reproductive and sexual integrity, especially disabled women’s.

Finally, Dreger said that the way the 40-person ethic committee went overwhelmingly in opposition to the “Ashley treatment” to unanimously endorsing it after a presentation by “Ashley’s” parents was a giveaway that something problematic may have happened. Earlier statement by Woodrum that “the parents did our job for us” in making a convincing case for the triple treatment was problematic for Dreger, who insisted that the ethics committee needs to do its own job. She further suggested that the parents were probably white, middle-class and well-educated. “They probably used PowerPoint,” she said, such that the medical professionals in the committee identified with the parents–and not with the patient. That, clearly, is a sign that the committee should have sought out an outside person and asked for a case against the treatment to be presented to them. She also stated that it was unconscionable that in this day and age the ethics committee lacked a representation from someone with a disability rights or disability theory perspective.

In response to the last point, Woodrum came back again to protest, saying that as far as he was concerned, the “disability community” was already represented (he did not clearly say that it was someone with disability, and my guess is that it’s a parent of a child with disability–I’ll email him and find out). But as Dreger as well as the noted disability theorist Adrienne Asche responded (latter was from the audience), a representative should not simply be someone who lives with disability, but the person–or more preferably, persons–must be familiar with the history and values of the disability rights movement and disability studies. Ted Carter jumped in and stated how it’s impossible to get representatives from every single minority group because the committee would be too large to be functional, but that seems like a ridiculous explanation for why there isn’t a good representation of disability rights movement on a committee that deals with medical ethics.

Woodrum also continued to assault the concept of judicial review and of guardian ad litem, suggesting that a court-appointed guardian would be useless because that person is a stranger to the case and one person can’t possibly be completely neutral and balanced. But it’s not the job of the guardian ad litem to be neutral or balanced–the role of the guardian ad litem is to steadfastly advocate for the child’s bodily integrity; it’s the judges whose job is to consider arguments from all sides and make a determination from a neutral point of view. Parents’ and doctors’ interests are already represented, so somebody will have to represent the child’s, or else nobody will. Woodrum insists that parents and doctors can properly consider children’s interests, but that’s different from having someone to represent children’s interest only. As Anne Tamar-Mattis of the Institute for Intersex Children and the Law later pointed out during the questions and answers period, it’s not an insignificant matter that “Ashley” had the legal right to have her interests represented by an attorney before the court, and that right was summarily deprived from her at the whim of the parents and the ethics committee. It’s a serious violation of her rights as a human being, whether or not she has the mental capacity to be able to appreciate any such representation, or whether or not the representation would have made a difference to the final outcome.

Since many doctors do not seem to understand why there is such thing as guardian ad litem, it was good that the day concluded with legal and policy discussions surrounding “growth attenuation.” First to speak was David Carlson of Washington Protection & Advocacy System (Disability Rights Washington), who was very articulate and I appreciate how he calmly explained why legal proceedings are not threat to doctors or parents. The role of the Court is not to replace or replicate the ethics committee, he said, but to allow guardian ad litem to independently represent child’s interest. He also pointed out that the legal process does not exclude perspectives of parents or doctors, and that judges and lawyers are also people with families. His presentation was basic and common-sensical (at least for those of us who are concerned about the rights of people with disabilities), but necessary. That said, how we would train judges and lawyers to understand the history and values of the disability rights movement remains a challenge.

Greg Loeben from Midwestern University in Phoenix (midwest of what?) came up next, who discussed what a typical ethics committee looks like and some of the typical problems with it. Some of the problems he feels with the ethics committee are their failure to seek out experts when confronted with complicated cases, and not enough time for dialogues. He also echoed Dreger’s sentiment that patients’ voices should be heard in the ethics committees, although I’m not sure if he’s actually doing anything at his own institution to make that happen.

The final speaker was Ed Holen of Washington State Developmental Disability Council, which is a public (state) agency that works with advocates and family members to support people with developmental disabilities. He seemed to feel out of place, as he didn’t have anything in particular to contribute to this specific discussion, but spoke about the history of disability movement in general. At one point, he spoke out against the phrase “the disabled” or “disabled people,” insisting that “people with disabilities” was a proper term: while that’s not a bad advice if they are giving a workplace sensitivity training, but it really wasn’t relevant to the discussion, and besides I like to use the phrase “disabled people,” to use “disable” as a verb, i.e. the society disables people, hence we are “disabled.” He dispensed other sensitivity tips like supporting people to live as independently as possible or not pitying people with disabilities, and perhaps doctors need to hear Disability 101, it wasn’t for me.

Throughout the symposium, parents who have children with various developmental disabilities spoke from the floor, most of them insisting that the “Ashley treatment” was the greatest thing that could be done for their children, and that what disability rights activists say is irrelevant because none of the people who are developed enough to attend a symposium like this and can advocate for themselves are very different from children like “Ashley.” For them, the treatment decision should be made between parents and the doctors, and any interference by the disability rights movement is an intrusion into the family’s privacy rights. But people with more moderate forms of developmental disabilities, as well as those with physical or mental disabilities also frequently experience the deprivation of their right to bodily integrity and autonomy, and are rightfully concerned about the expansion of the “Ashley treatment.” Doug Diekema has said that parents are already lining up in his office, demanding the “Ashley treatment” for their less severely disabled children, some of whom have criticized Diekema for being too strict about which child can receive growth attenuation.

It was painful to see so many parents demanding such drastic procedure for their disabled children, even as I try to understand that as an expression of the hardship they face as parents of severely disabled children. Alice Dreger mentioned somewhere in her presentation about the intense prejudice mothers face after giving birth to a severely disabled child: what have you done to your fetus while you were pregnant? I genuinely feel that parents need a space to vent the daily struggles they face, but having to witness it in front of my eyes, especially at a bioethics symposium, was difficult. To make it worse, they continue to insist that their demand for the “Ashley treatment” is all about their children’s needs, as if their own convenience or comfort has nothing to do with it. That, of course, is a reflection of the stigma Dreger spoke about, but it still made it difficult for me to feel empathetic with the parents.

In conclusion, I’m glad that I went to Seattle for the symposium, but I’m also glad that there were my friends there with me. I was also happy to see many disability rights activists and advocates speaking out on panel and on the floor. But I wish they had invited folks from groups like ADAPT, Not Dead Yet and Feminist Response in Disability Activism (FRIDA) to speak on the panel, as they are the ones who have been staging protests at medical conferences, etc. to demand better treatment of people with disabilities after the news about the case emerged (Amber from FRIDA told me that she wasn’t even aware of the symposium until I emailed her about it). As Adrienne Asche said, it’s important that we actually put people who have awareness of the history and values of the disability rights movement on panels and committees, not just anyone who has a disability or works for disability-related agencies, and in that sense I feel that the Seattle Children’s Hospital lost a valuable opportunity to build relationship with the national disability rights activists’ community.

Note: This report is based on my notes, and is accurate to the best of my recollection, but my memory isn’t perfect. If you are quoted in this report and feel that your views are mischaracterized, please do email me and I’ll work with you to make it more accurate.


  1. Re: “ASHLEY’S TREATMENT” I am a parent advocate who just enlightened herself about this subject found in The Arc US Medical Position Statement and your web site. The Arc US is prohibiting a medical advocate to be able to request such a treatment. Regarding mental age–which has been known as the most harmful concept to persons with developmental disabilities–the number of the identified IQ is best described as a prediction of how well a person will be at mastering school education. So a five year old child with an IQ of a “three month old” would be expected to succeed at school education similar to that of a typical three month old child. No biggy. The problem comes by assuming that all that the child will comprehend, will be able to do any time in the future will also be in the manner of a typical three month old child. Now, we don’t know what goes on in the minds of many individuals, etc. I have a son whose IQ is about 55. That meant that at the age of six he could be expected to do as well as a typical three year old in school. Now that he is 42–the numbers don’t work any more. The numbers also represent the percentage of persons who would do better or worse than a person with a 55 IQ. Put the common comment by parents relects that the number tells everything about an individual. My son can travel on train, plane or bus by himself; he can get to ebay on his new computer. He does not read except functionally, but holds a job at the local grocery store and uses the store computer to check in and out. If I and others insisted upon seeing him as never gaining in any areas throughout his life–he propbably would not be doing these things.

    The issues facing parents are emense–especially since the medical community is now able to save many physically disabiled infants that in prior years did not survive. I can totally understand that a child can present many dificulties, yet not seen as a “burden” in the philosophical meaning. We do need to support families from day one in their homes as well as at other integrated child care centers (with appropriate supports) that are used by typical families who work outside of the home.

    I can understand a family seeking some intervention who can extend the growth of legs for instance in an effort to allow a child to grow more typically. And as for those children who continue to grow past when most individuals usually cease growing, I can see trying to undersand why and intervene when it appears that something truly abnormal is going on. Some very tall persons can’t hold themselves up to sit or stand, etc.

    Thank you for sharing your notes on what seemed to be a very complicated seminar.

    Comment by Nancy Rhead — August 10, 2008 @ 6:59 pm

  2. […] developmental disability. This symposium was an update to the 2007 symposium that I have reported about earlier, and I came home more disturbed than I had […]

    Pingback by » Growth attenuation treatment going mainstream, and the limits of disability studies — January 27, 2009 @ 5:28 am

  3. […] more detailed version of this report can be found on my personal blog, along with my report on the 2007 symposium. Posted in Ashley X, Autonomy, Bioethics, Children, Cognitive Disability, Community-University, […]

    Pingback by One in 1,000 children may become subjected to growth attenuation « What Sorts of People — February 22, 2009 @ 11:20 am

  4. […] more detailed version of this report can be found on my personal blog, along with my report on the 2007 symposium. Posted in Ashley X, Autonomy, Bioethics, Children, Cognitive Disability, Community-University, […]

    Pingback by One in 1,000 children may become subjected to growth attenuation « What Sorts of People — February 22, 2009 @ 11:20 am

RSS feed for comments on this post. TrackBack URL

Leave a comment

Leave a Reply