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Presenting at elite universities: a guilty pleasure? And introduction to my next piece on borderlands of gender

Date: March 18, 2010

I just came home from my trip to Providence to speak at Brown University for the second time. My last visit there was in April 2007, which you can read about here.

The title of my presentation (workshop) was “Transgender Inclusion, or Demilitarizing the Borderlands of Binary Gender System.” It is a critique of “inclusion” model of transgender activism, which promotes individuals’ rights to self-define who they are while leaving the larger structure of binary gender system mostly intact, only creating rooms for minor “exceptions.” While self-determination is an important goal, the promotion of individual choice and responsibility in the absence of justice and equity is the hallmark of the neoliberal ideology and needs to be challenged.

As the title suggests, the workshop also introduced the concept of borderlands, which Gloria Anzaldúa describes as “vague and undetermined place created by the emotional residue of an unnatural boundary.” In the book Borderlands/La Frontera: The New Mestiza, Anzaldúa presents a parallel view of borderlands in the U.S.-Mexico border as well as the borderlands created by the boundaries of race, gender and sexuality. I’ve been using the metaphor of borderlands to talk about transgender issues for a long time, but I have not been able to present it in a way that was easy for people to understand, but preparing for this workshop helped me to think through how to go about writing a piece that centers on this idea. In other words: stay tuned.

I actually did this workshop at the National MEChA conference at University of Oregon a while back, but that was an audience that was already familiar with issues around borders, borderlands, and immigration. But the highly privileged Brown University crowd would have a very different backgrounds, and I worried that I might not be able to convey my ideas very well.

To my surprise, though, everything went fine. In fact, it turned out great. I have given workshops and lectures at many universities around the country, but speaking at an elite school like Brown (other schools in this category that I’ve visited include University of Chicago, Cornell, Columbia, and Yale) is actually very enjoyable and stimulating for me. Students are bright, of course, but they also possess the cultural capital that affords them the luxury of abstract critical thinking and complexity. And at the same time, I feel certain level of resentment at their highly privileged existence and prospect–these are the people who would join companies like Goldman Sachs and get huge bonuses while the rest of us suffer from unemployment and increasingly hostile labour market.

When talking about the binary gender system, people sometimes jump to the conclusion that we should simply “deconstruct” genders so that everyone is free to be who they are. I’ve been told over and over (by bunch of graduate students, scholars, and some highly educated trans activists) that the intersex movement should work on challenging the binary gender system because that is where the oppression of intersex people stem from. I have nothing against that proposal, except for the fact that intersex children are being harmed by the society’s intolerance of their variance every day and need more immediate, practical help now.

I did not want Brown students to go home only with the critique of identity-based argument for transgender “inclusion,” or with a simple understanding that “deconstructing” binary gender system (however long it would take, and however many trans and intersex people would continue to suffer until that magical day) was the way to go. My call for “demilitarizing the borderlands of binary gender system” is distinct from simply “deconstructing” the binary: it starts with an acknowledgement that trans and intersex people live in the borderlands, and take concrete steps to demilitarise their environment that is the consequences of the society’s attempt to draw a clear and unambiguous boundaries where none naturally exists.

More on that coming soon…

By the way, out of 16-18 students who came to my presentation, not one of them has ever read anything by Gloria Anzaldúa! WTF!?

Delightful dinner conversation at the Gender Studies Symposium at Lewis & Clark College

Date: March 16, 2010

This past week, I attended the 29th Annual Gender Studies Symposium at Lewis & Clark College. Since I am local and available, I seem to get invited just about every single year on various panels, but this year I was invited to speak on the topic of disability and sexuality.

There is also a dinner reception on the first day of this conference for organizers, college staff, and presenters each year. I’ve never actually attended the dinner in all those years I’ve been part of the conference, but this year I thought I’d check it out. So I walked into a room full of people I didn’t recognize, and picked a table to join.

It turned out that all four people sitting at the table I picked were administrators at Lewis & Clark who had something to do with the conference. After a quick introduction, they went back to the conversation they were having before I joined the table, which was about the small swastika drawing inside men’s bathroom at the said campus.

To summarize their conversation, they were talking about how students initially did not take the issue seriously, dismissing the drawing as an isolated incident that didn’t mean anything. But the school took time holding campus-wide conversations about the incident and how it might affect Jewish students, students of color and others targeted by the Neo-Nazis and other white supremacy groups, and many white non-Jewish students began to understand that it meant something to some students and should not be tolerated.

“Can I ask a question?” I asked. “Well I was reading the program for this year’s conference, and correct me if I’m wrong, but it seems that all main speakers and performers seem to be white this year. I don’t think this conference was like that in other years I came. Has there been any conversations about that?”

Immediately, a couple of the administrators started stressing, “it was not intentional!” “We noticed that after we planned all the main speakers, but we didn’t do that on purpose. We picked our speakers according to their expertise in this year’s theme, and it was a coincidence that they were all white.”

It wasn’t on purpose? Of course it wasn’t! If I thought it was on purpose, there is no way I would step a foot on this campus ever again (and while this isn’t the main point of this blog post, WTF is up with the name of this school anyway?). And am I supposed to feel comforted because even though all of the main speakers and performers in this conference are white, it was not intentional?

The problem, of course, is not the presence of malicious intent, but the absence of anti-white supremacy intent to create a conference whose speakers and performers are not just competent, but also diverse. It is about the lack of willingness on the part of organizers to go a little bit deeper to find and invite researchers and speakers of color with equal level of expertise and knowledge who are not receiving fair share of attention or status either because of their background or because of the focus of research that white academia deems unimportant.

And if the college is not interested in making an effort to not let very predictable “coincidence” after “coincidence” take place not just in terms of the racial breakdown of the main speakers, but in other aspects as well, what’s the point of hosting Gender Studies Symposium anyway? Besides, how did the administrators fail to see the parallel between the defensiveness of Lewis & Clark College students over the swastika drawing on the urinal and their own defensiveness in response to my query?

This is precisely what I was worried about the field of bioethics

Date: March 15, 2010

After a month or two of scholars and intersex activists challenging the prenatal dexamethasone treatment on fetuses suspected of having congenital adrenal hyperplasia (CAH) designed to prevent the virilization of clitoris, the pro-dex doctors are starting to publicly defend the controversial treatment.

In Bioethics Forum, a blog published by Hastings Center and where Hilde Lindenmann, Ellen Feder, and Alice Dreger have previously published a piece criticizing the treatment, two articles defending the treatment have been published.

In addition, there is a research review paper in the current issue of Obstetrics and Gynecology Survey which apparently suggests that the dexamethasone treatment has benefits (But what is the “benefit” they are talking about? Not being born intersex?).

I had also written my own response, which was posted on Bioethics Forum, to the scholars’ letter of concern about dexamethasone treatment (“letter of concern from bioethicists”) to express my broader concern about the field of bioethics and role it plays in legitimizing ethically troubling medical treatments designed to address social problems.

While I haven’t been able to read the Obstetrics and Gynecology Survey piece yet (although it seems to be a straightforward review paper), both of the responses in Bioethics Forum seem to be exactly the examples of the problems with the field of bioethics that I was trying to address in my own piece.

Lantos epitomizes the tendency for pediatric bioethicists to endorse “let the parents decide” model whenever an ethical question is raised about any particular treatment, rather than seriously considering social and ethical implications of such treatment. It’s interesting that he calls for the “marketplace of ideas and marketplace of medical treatment” to sort it out, as it apparently would mean that bioethicists should have an opinion one way or another only when evidence is completely on one side of the debate, a scenario that does not require bioethicists in the first place. Who needs bioethicists if marketplace is competently guided by the invisible hands of God?

Diamond et al. (I only recognize the names of Diamond and Spack among them) embodies another problem with the bioethics, that is the main concern of my essay: bioethics’ obsession with regulatory mechanisms and procedures rather than the actual ethical considerations. I feared that Alice Dreger’s and others’ critique of Maria New’s practice as an un-authorized, un-supervised human subject research involving off-lable medication would only lead to a kinder, gentler version of the same practice under full IRB review, and that appears to be precisely what Diamond et al. are calling for. That is definitely an improvement over the current situation, and perhaps it’s a step we must go through, but I really don’t want to wait for ten or more years before the registry begins to produce useful information.

I want to write more, but I have to finish writing grant proposal to get a new group for queer people with developmental disabilities funded due Monday (and it’s 12:30am on Monday) and get ready to fly out to the East Coast in less than 24 hours…

By the way, if you happen to be near Providence, I’m presenting a workshop at Brown University on Wednesday, March 17th as part of Brown’s Pride Series 2010. The workshop is titled “Transgender inclusion, or Demilitarizing the Borderlands of Binary Gender System.” See their site for more info.

On Being Suspicious of Bioethics, or Reflections on the Profession In Search of Kinder, Gentler Protocol for Everything

Date: February 19, 2010

I have to get busy packing, since I’m heading to the airport very soon (off to Madison, Wisconsin, to attend/present at Midwest Bisexual Lesbian Gay Trangender Ally College Conference), but I want to announce that my article, “Why I am Suspicious of Bioethics,” was published in Bioethics Forum, an online publication of Hastings Center (title was decided by the editor, not me).

It’s partly about the prenatal administration of off-label medication intended solely to prevent genital virilization (clitoral enlargement in this case) in female fetuses, and also about the controversial “growth attenuation” treatment for children with severe developmental disabilities but it’s also about something larger: how bioethicists are becoming enforcers of established procedures and protocols (which are, after all, determined by the medical community) rather than instigators against injustices in medicine whether or not specifically prohibited by existing policies.

Anyway, I don’t have the time to discuss the article further, so go ahead and read on…

To Portland State University Women’s Studies Governing Board re Proposed Name Change

Date: January 24, 2010

January 23, 2010

PSU Women’s Studies Governing Board members,

I am writing you as a former student, instructor, and frequent guest lecturer of Women’s Studies Program at Portland State University regarding the public discussion I attended this past Thursday about the potential change of the Department name.

At the public meeting last Thursday, it became clear from early on that there were two main concerns/interests that the group was trying to balance: first, there was a strong sense among some outspoken participants that the word “women” should remain, in order to honour the Department’s legacy and to resist erasure of women in the rest of academia; second, there was an even stronger feeling among others that the name should be expanded to include gender and sexuality, in order to more fully represent the content of the program as well as to appeal to a broader audience. Both groups quickly acknowledged each other’s arguments, which made the conjuncture, Women’s, Gender and Sexuality Studies, a popular alternative.

And then, several women of colour brought up a concern that highly abstract terms like “gender and sexuality studies” alienate members of their families and communities, making it more difficult to recruit and retain women of colour within our program. I felt that their concerns were very relevant and valid, but I did not hear any other people acknowledge them or to offer compromises to address them. I requested a five-minute caucus time for the women of colour in the group because I felt that the “public” in this public meeting ignored and dismissed the real concerns of women of colour who spoke up, and I wanted to hear them better and to strategies how women of colour can have real impact in the process.

The voting took place immediately after the caucus time, and “Women’s, Gender and Sexualities Studies” was the most popular name, as I had expected. It received many more votes than the second choice, which was to retain “Women’s Studies.” I do understand that there is a need to change the name if only to reflect the presence of sexualities studies curriculum, and suspect that many people expect the Governing Board to go along with the popular will. But given the fact that the split between WGS and “Women’s Studies” went almost along the racial line, with most people in the white majority preferring WGS and most women of colour preferring “Women’s Studies,” I caution against the use of simple majority rule.

At the same time, I do not expect the Governing Board to throw out the most popular choice entirely, along with two years of internal discussions, simply because most women of colour voted against the change. I suggest that the Governing Board adopt the new name: Department of Women’s Studies and Gender & Sexuality Studies. This is longer than even the longest proposal that was on the table this past Thursday, but it is the natural compromise between the two top picks from the community, and has the advantages of both: it is inclusive of scholarly explorations into gender and sexuality issues outside of the traditional “women’s studies” framework, while at the same time allowing people to continue to refer to the program casually as “Department of Women’s Studies” as a shorthand.

To be honest, I did not walk into the meeting thinking that I would be sympathetic to the argument for status quo. I am very excited about the expansion of the program into areas of gender, sexuality, and queer theory, and I would have picked something more along the line of WGS if I were to decide it by myself. But after hearing voices of other women of colour, and seeing how the process failed to include and address their concerns, I felt that it was more important for me to stand in solidarity with them than to promote the name that I personally like most. I urge members of the Governing Board to take their/our concerns seriously, and come up with a solution that satisfies their/our needs, possibly but not necessarily along the line of my suggestion.

Sincerely,

Emi Koyama

Funny.

We need to abolish, not “re-evalute,” domestic violence shelters

Date: May 20, 2009

In a post titled “Are Domestic Violence Programs Still Meeting the Needs of Survivors?,” Advocating Ethics, which provides “latest news & information for domestic violence/crime victim advocates, both paid and volunteer, in the state of Michigan” cites my paper pointing out structural problems inherent within our domestic violence shelter system.” Or rather, it cites portions of my paper that quotes other people, whose positions I actually critique.

The post starts by discussing changes that have taken place since the first domestic violence shelter in the U.S. was founded in the 1960s:

Domestic violence programs have a rich and inspiring history of selfless volunteers sacrificing time, resources and money to help battered women find safety and support. Early on, some women just opened their homes to victims The first shelter for women in the United States was started in California in 1964. […] Out of this grassroots era of advocacy there have evolved structured organizations sanctioned by national and state associations. […] A great deal of energy is put into compliance with many different grantors, coalitions and commissions. Less and less energy is directed to survivor’s daily needs and practical, ground level victim advocacy.

Then, as an example of others who have realised this, it quotes paragraphs in which I quote Patricia Gaddis’ and Nancy Meyer’s comments.

“…Only a short time after the Feminists had fallen asleep, mainstream professionalism infiltrated battered women’s programs, bringing forth a new and unpleasant hierarchy within the movement, a hierarchy that undermined the Feminists’ effort to eradicate the root causes of domestic violence. Shared power among employees was quickly discarded and ethical practices that included the voices of battered women, basic training on the dynamics of domestic violence, and the power of shared experience among women was frowned upon… Unqualified executive directors were brought in from the mainstream to tell shelter staff and court advocates that they were not as important to the program as the licensed professionals… Battered women seeking refuge were held captive by the never-ending shelter rules that were put into place by the mainstream professionals who thumbed their noses at the original founders. Many safe houses now seemed more like prisons, or ‘social’ bed and breakfasts, that prevented the disabled and women of all races, ages, classes, and religions and ethnic groups from entering. Victims were referred to as ‘crazy’ and whips were cracked upon the backs of advocates or victims who dared question the professional task master’s authority… Shelter programs were no longer a safe place for all battered women.” (Gaddis 2001, p. 16)

Nancy J. Meyer of the Washington, D.C. Coalition Against Domestic Violence defines “de-politicization” as “a reframing process that directs attention away from (and recreates knowledge about) sexism, male dominance, patriarchy, and female subjugation.” “There is nothing inherently wrong with trying to improve the conditions in which battered women live,” Meyer argues, “but when putative efforts to just ‘make it better’ become the end goal, the political vision and motivation to address the real exegesis of male violence becomes sublimated… The political disappears and domestic violence becomes a naturalized part of what appears to be an unchanging or unchangeable social landscape.” (Meyer 2001, p. 23).

While I sympathise with Gaddis’ and Meyer’s disdain for the state of anti-domestic violence movement as it has come to be, I actually disagree with much of their analyses, as I made it clear in the same article. In Gaddis’ and Meyer’s world, the early anti-domestic violence movement was egalitarian, and women united through acknowledgment of their “shared experiences” to fight patriarchy; the anti-domestic violence movement has become problematic only as a result of institutionalisation and professionalisation.

What I argue is the opposite: the early anti-domestic violence movement was not as egalitarian as Gaddis and Meyer claim, since there are many ways some women can have power over other women without formal structures; if it appeared egalitarian to Gaddis and Meyer, that only means that they were oblivious to their own privileged positionality. In fact, I argue that it was precisely this feminist myth of presumed egalitarianism among women that perpetuated abusive structures of power and control within the anti-domestic violence movement: as feminists, we failed to recognise our own capacity for abusing power, which led to inadequate or non-existant structures of accountability and ethics.

Gaddis and Meyer recommend that our movement must once again focus on “power of shared experiences among women” to address the “root cause” of domestic violence, which they believe to be the patriarchy. My opinion is almost opposite: I believe that we must start from a true acknowledgment of the vast diversity of women’s experiences within many intersecting systems of oppression.

That said, the author of “Advocating Ethics” was apparently not interested in my view, or at least unconvinced by it, as it becomes evident from her comment following the above quote:

[…] there is a growing and very vocal community of survivors who feel re-victimized or at least dissatisfied by the domestic violence services they attempted to access. […] The reasons are varied from blatant mistreatment to the lack of resources to accommodate family pets. […] The current economic climate exacerbates the problem. Resources have diminished. There are less training opportunities. New technology for both staff and survivors is critical but costly.

Battered women have less need for temporary shelter due to improvements in the court system in the area of personal protection orders, domestic violence arrest policies and pretrial release conditions but greater need for support services. Survivors are now more desperate for real economic assistance, something that is not possible in the current structure of most programs and funding sources.

I do agree that “real economic assistance” is extremely important, but that is not a new development resulting from the current economic crisis: survivors, and lots of other people too for that matter, always needed more assistance with housing, healthcare, etc. than are available. But it concerns me that the author is uncritically applauding the positive outcomes of harsher law enforcement approach as the primary vehicle to protect survivors of domestic violence (a commenter goes further to advocate for “tougher sentencing to keep [abusers] in prison) without addressing how such expansion of state power exacerbates state and police violence against women, especially women of color, poor women, immigrant women, and queer people.

Then the blog concludes:

The time has come for domestic violence programs to assess which services are effective advocacy and which are simply based on time-worn tradition rather than current needs of women and children. Domestic violence agencies still save lives every day. There will always be a primary need for a safe haven. The majority of advocates are selfless and hardworking and in it for all the right reasons but are confined to the policies of their agencies. A successful program will continually evaluate, update and re-evaluate to ensure the best quality services and safety of those who come to them for help.

There will always be a need for safe haven, but I don’t feel that our domestic violence shelters provide it. I think that we need to be deeply suspicious of the coupling of housing, supervision, and emotional support: while social services in general tend to be paternalistic, the concentration of various competing interests and roles into one entity (the agency) as we often see in domestic violence shelters breeds abuse.

In my opinion, the best solution to this problem is to decouple housing: employ housing first approach to help survivors find an apartment in the community first, with long-term rent assistance of course, and then deal with other issues. People might argue that some women desperately need support and supervision to be available 24/7, but anyone who have worked at our shelters know that such women are first to be evicted from shelters because of the difficulty of complying with all the rules and living in a crowded shared housing setting, because shelters are not designed to adequately support women with such needs. Perhaps we could adopt disability rights movement’s principle of independent living here: survivors should be assisted in the least restrictive environment each individual can handle, which to most survivors and their children would be their own apartment.

From a Magazine Rack…

Date: April 28, 2009

*

Growth attenuation treatment going mainstream, and the limits of disability studies

Date: January 27, 2009

Last Friday, I traveled to Seattle to attend the University of Washington symposium on growth attenuation treatment for children with “profound” 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 anticipated.

The symposium was divided into two parts: first, organisers of Seattle Growth Attenuation & Ethics Working Group presented the outcomes of the Working Group’s discussions, then it was followed by a “group discussion” between panelists and the audience.

The Working Group was created three years ago when the controversy over six-year old Ashley’s hormonal growth attenuation (combined with illegally performed involuntary hysterectomy and mastectomy) surfaced. It included many scholars, lawyers, and at least one non-professional parent of a child with developmental disability, but no representative from the disability rights movement. Consequently, none of the panelists for the symposium were disability rights activists.

First speaker was Dr. Benjamin Wilfond (UW Professor of Pediatrics and Director of Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital), who gave an overview of the entire panel. He began by remarking that the Working Group had “good fortune” to have “interesting and stimulating conversation” about the topic, and that despite some internal disagreements all Working Group members shared a commitment to improve the lives of persons with disabilities and their families. Further, Wilfond explained, everyone developed a sense of appreciation for compromises the Working Group was able to reach.

While Ashley went through a combination of treatments that her parents call “Ashley Treatment”–i.e. hormonal growth attenuation, hysterectomy, and mastectomy–the Working Group focused on the ethics of growth attenuation, as it was genuinely new approach to treating children with severe developmental disabilities (unlike hysterectomy, which has been performed on these children for many years), and potentially most in demand.

What are the criteria that must be met for a child to become a candidate for growth attenuation? According to Wilfond, most Working Group members agreed that the child would have to have very limited ability to communicate or to move her or his body, and require total care including feeding, bathing, and toileting. Further, while the child’s condition need not be limited to any particular etiology, but must be presumed to be permanent.

Conspicuously missing from Wilfond’s discussion is the degree to which the child’s intelligence needs to be hindered. Ashley was said to have the intellectual capacity of a three to six month old baby, so I had assumed that any future protocol on growth attenuation would make similar level of intellectual capacity a requirement. Maybe I’m missing something here, but all I heard was that the child is permanently non-communicative and non-ambulatory.

Under these criteria, Wilfond estimates that about 4,000 children would become candidate for growth attenuation treatment in the United States, or about one in 1,000. This is double the estimated number of children being recognised as intersex and considered for genital “reconstruction” surgery each year. Not all parents who are offered this option would go for it, so the actual number of children treated would be less than this, but it is still a surprisingly large number.

Most Working Group members felt “somewhat uncomfortable” about growth attenuation, Wilfond continued, but they were mostly willing to accept parents’ right to choose such an option under certain circumstances.

Next, Sara Goering (UW Assistant Professor of Philosophy and Program on Values in Society) spoke about four main areas of concern raised by the disability community. These were: 1) devaluing of people with disabilities; 2) inadequacy of social resources for people with disabilities and their families; 3) risk of broader use; and 4) risk of stigmatisation. In other words, Goering was addressing possible negative social impact of growth attenuation treatment.

First, Goering stressed that we must view disability community’s concerns in the historical context in which people with disabilities have been and continue to be deprived of autonomy and physical integrity, emphatically by state-sanctioned involuntary sterilisation programmes. The concern here is that regardless of parents’ intention, growth attenuation could be viewed as reflecting the low status of people with disabilities, and can perpetuate adverse social attitudes.

Some have argued that disability studies perspective is irrelevant to the population being affected by growth attenuation, Goering said, but most Working Group members acknowledged that there are links between the treatment of people with milder forms of disabilities and those with “profound” developmental disabilities. Therefore, any protocol for performing growth attenuation therapy must involve disability studies perspective in some way.

The next question is the degree to which the demand for growth attenuation is the result of the inadequacy of social resources and services for people with disabilities and their families, and how wide-scale adaptation of growth attenuation treatment might exacerbate the problem. If growth attenuation could reduce the cost of providing care to people with profound developmental disabilities, then public funds could be redirected to promote the treatment, which in turn would take away funds from services to those who did not receive growth attenuation.

I feel that this threat is real and important, but Goering suggested dismissively that she was not certain that growth attenuation would reduce cost, and if even if it did that would not be a problem unless one finds growth attenuation unacceptable on principle to begin with. Her argument sort of reminds me of Slavoj Zizek’s re-telling of the broken kettle logic: I never borrowed the kettle, I returned the kettle in good shape, and the kettle was already broken when I borrowed it.

Next, Goering also dismissed the concern that, once accepted, growth attenuation would be applied to a broader range of children with various disabilities, such as those with Down syndrome or profound physical (but not developmental or cognitive) disabilities. The Working Group opposes broader use of growth attenuation for these cases, as it views one’s communicative ability to be the key criteria. With the development of clear eligibility criteria, Goering argued, the slippery slope could be prevented.

Finally, Goering considered the risk of stigmatisation to children whose growth is attenuated. She pointed out that people with unusually short stature are stigmatised in our society, but that may not be an issue among the population in question. She also pondered on the possibility that families could be stigmatised by their decision to choose growth attenuation for the child, but once again families with a child with profound developmental disabilities are already stigmatised.

In conclusion, Goering acknowledged that the larger disability community has legitimate concerns, but they are not significant enough to override the benefit growth attenuation presents to families with a child with profound developmental disabilities.

Dr. Doug Diekema (UW Professor of Pediatrics and Director of Education at Treuman Katz Center for Pediatric Bioethics) spoke next about the interests of the child whose growth is being attenuated. First, he considered the argument that having growth medically limited might disadvantage the child. Diekema explains: normal to above-average height is associated with healthy self-esteem and high social standing in our society, so being unusually short is a major disadvantage in life. That said, these issues are not likely to be relevant for the population being considered for growth attenuation, as these children lack social capacity to enjoy benefits of normal stature.

Then Diekema lists potential advantages of remaining small: a smaller person is easier to take care of, increasing the likelihood the child receives good daily care. A smaller body is easier to transport, which makes it easier to involve him or her in family activities outside home, such as walks and vacation trips. As the parents age, these advantages would translate to longer period of time they can live with the family instead of being shipped to a facility. There may also be some medical benefits too, such as less likely to be dropped by accident and injured. In short, Diekema stated, growth attenuation may not be necessary to meet goals of happy, integrated lives, but it makes it easier to do so.

In response to the argument that growth attenuation violates the child’s bodily integrity, Diekema raised a thought experiment: short stature could result from an act of omission, such as certain medical problems that are not treated, or from an act of commission, i.e. growth attenuation. If the endpoint is the same–the child remains unusually short–are there meaningful ethical differences? Diekema does not think so.

Diekema also discussed if the amount of attenuation might affect our ethical judgment. For example, is the final height of 2 ft. as opposed to 4 or 5 ft. acceptable? Also, is it just the final height that matter, or how much shorter the child is than she or he would have been otherwise? Many Working Group members felt that a large change in the final height would be a violation of the child’s dignity, as it is disrespectful to who the child is.

On the topic of dignity: there are two competing basic philosophies concerning human dignity: first view holds that dignity is inherent in all human beings for simply being human; the second, as expressed by philosopher Peter Singer, argues that dignity is accorded for the possession of some essential characteristics, such as being sentient or self-aware. Most members of Working Group accept the first theory; Diekema pointed out that Christian tradition also supports the first view.

The question then becomes: how do we respect a profoundly disabled child’s dignity? Some people feel that growth is a fundamental part of being human, and therefore is necessary to preserve one’s dignity; others suggested that being part of the community was more important, and growth attenuation could help facilitate it.

Finally, Diekema recognised that accuracy of medical prognosis was a major concern for any growth attenuation procedure. In addition to diagnosis, we need to be certain about the permanence of the condition, as well as the child’s capacity, especially her or his ability to communicate. The child would have to be at least 3-4 year old for the doctors to be sure about the prognosis, Diekema explained, and the treatment should be done before age 6, according to “the endocrinologist who was with us” (Ashley’s endocrinologist Daniel Gunther has committed suicide since last symposium).

Next, Denise Dudzinski (UW Associate Professor of Bioethics and Humanities) spoke about parental decision-making and oversight. In general, we allow parents to make many decisions on their children’s behalf, except when there is a risk of serious harm that is not justified by the corresponding benefit. In the medical setting, providers can refuse to provide requested interventions, but otherwise give deference to the parents.

Parents’ motivations for requesting growth attenuation vary, but parents’ interests are often intertwined with children’s interests. FOr example, both may enjoy family and social activities together outside the home, and growth attenuation might help make it happen more readily. Parents also must balance the interests of the child’s siblings and other family members, as well as their own because parents’ interests also count, Dudzinski said.

Sometimes, parents may appear to be pursuing their own interests, such as when they request growth attenuation to reduce their own burden, but it may still result in positive effect on the child. Dudzinski urged doctors to respect parents’ special knowledge and insight and to view them as partners in providing care to the children with disabilities.

Dudzinski then spoke about the “robust” informed consent procedure which parents should go through before growth attenuation is performed. Informed consent generally requires the patient’s willing acceptance of the treatment after a full disclosure and understanding of potential risks and benefits, but in this case we must be particularly mindful of the history of involuntary sterilisation that parents obediently “consented to” on behalf of their disabled children.

A “robust” informed consent must provide a balanced information, such as that benefits and risks of growth attenuation is still debatable, and a referral to other parents who made various choices. Dudzinski also stated that medical professionals need to make parents aware of social and historical context surrounding the treatment, including a sheet explaining disability activists’ opposition to the procedure. Dudzinski compared this to the guidelines being promoted by intersex activists and allies for parents of children with intersex conditions, or disorders of sex development.

As for oversight, there are two main routes: judicial review involving guardian ad litem, or internal ethics committee or consultation services. The court is often uncomfortable about and ill-equiped to rule on such private medical matter, and many physicians are uncomfortable about getting directions from the court, Dudzinski said. Instead, she argued, an ethics committee involving a variety of perspectives, including that of disability studies, could be employed to make recommendations on case-by-case basis.

Dudzinski also promoted the idea that research could provide an additional layer of oversight. The very process of research itself would require institutional review board and scientific review of protocols; in addition, it would allow us to make better decisions in the future. The research could employ prospective approach, or a creation of registry for growth attenuation cases.

The last speaker was Paul Steven Miller (UW Professor of Law, Director of Disability Studies Program), who reiterated Wilfond’s declaration that everyone in the Working Group worked together to improve lives of people with disabilities, respecting contrasting perspectives and appreciating the need for moral compromises. Growth attenuation is ethically appropriate and defensible, Miller said, but there needs to be safeguards. Providers should not go forward with growth attenuation simply because it is available and requested, and consider each case individually.

These safeguards come in three parts: clear eligibility criteria, robust informed consent procedure, and oversight. Further, research on outcome as well as scholarship on social impact of growth attenuation must continue, as does advocacy for persons living with disabilities. With this, an open discussion period began.

First, a mother of a grown child with autism took the mic. Her question: how can you rule out the possibility that advances in medicine might change the child’s disabilities? Diekema answered that realistic future progress must be taken into consideration, but it must be balanced with the benefit the family would be missing while waiting for the medical advances.

A pediatrician came up next, asking if there have been any other case reports, and if so what the impetus was for this treatment. Diekema disclosed that he had heard from several other doctors who performed growth attenuation therapy, and reported that all cases have gone well, and all parents are happy so far. As for the impetus, doctors used to routinely used hormone treatment to limit the growth of daughters of tall parents back in 1950s and 60s (when tall women were considered unmarriable), so there was plenty of data available. It was not so far-fetched to attenuate growth of profoundly disabled children using the same technique.

Next questioner, a psychologist, brought up two main questions: 1) what have other ethics committee decided in other growth attenuation cases, and 2) when the criteria restricts the treatment for “profoundly” disabled children only, it appears that these children are devalued in comparison to those with milder forms of disabilities.

Diekema replied once again, saying that ethics committee at other institutions also evaluated the proposed treatment carefully, and reached the conclusion similar to the Seattle Children’s. He further stated that at least two of them took place at major research university hospitals, each taking a year deciding on it.

As for the reason growth attenuation is offered as an option for children with certain forms of disabilities and not others, Diekema stated “regrettability” was a factor. By that, he meant that children who can develop enough intellectual capacity to regret the treatment he or she received should be spared from it. But since degree of intellectual capacity was not officially part of the eligibility criteria, I find Diekema’s comment confusing.

It appears to me that doctors are trying to have it both ways: when arguing why growth attenuation benefits the child, they talk as if the child is intelligent enough to understand the surrounding and enjoy being in the community; and yet, when people express concern about the negative social impact of the treatment, doctors dismiss the concern by suggesting that these children lack the capacity to feel harmed by it.

Diekema however seems to think that people with milder forms of disability are missing out: he stated that the strict eligibility requirement may be depriving beneficial treatment option from some people with disabilities, but he would rather “err on the side of caution.” Unfortunately the eligibility requirement does not appear to be that strict, or Dr. Diekema is that cautious.

Next, we had a pediatric neurologist or something, who raised the philosophical point that omission and commission are not morally equivalent. Being a philosopher, Goering replied that they were not equivalent when there is an element of uncertainty, but the difference becomes miniscule when the consequence of omission and commission are certain. Diekema also adds that doctors could harm the patient by not doing something, so the Hippocratic oath of “first, do not harm” can apply to both omission and commission when the harm is imminent. I’m not sure how I think about this, but such abstraction does not seem to be very helpful in our current discussion.

There were nobody at the mic, so I went up next, with two questions. First, I expressed how disturbed I felt about the media’s use of the term “pillow angel” to describe Ashley and other children who have been treated with growth attenuation therapy, and asked how the panelists felt. I mentioned that from parents’ perspective it was meant to be a term of endearment, but when it is adapted by the media as a general term to refer to someone whose growth is attenuated, it seemed to perpetuate the unwelcome infantilisation of people with disabilities.

Goering initially stated that it was parents’ prerogative to call their child whatever they like, but acknowledged that it might become a problem when the media popularises the phrase as a general term. She also shared concern about the infantilisation of people with disabilities, including those who receive growth attenuation treatment, and stated that parents’ motivations may vary but a robust informed consent procedure would ensure that parents understand that their children age and grow even if their stature remain small.

My second question was about the difference between judicial review and internal ethics committee. One of the key differences between the two is that in the judicial review, for example for obtaining permission to perform hysterectomy on a minor, an adversarial proceeding is required. That is, the court appointed guardian ad litem for the child is obligated to oppose the procedure, rather than vaguely standing up for what she or he happens to think is in the best interest of the child. The judge, hearing arguments both for and against the procedure, makes the decision. I asked if it might benefit the ethics committee proceeding if it were to incorporate adversarial structure in it similar to the judicial review–for example, by hiring a disability rights lawyer to make the best possible argument against the procedure.

Wilfond and Miller explained that the ethics committee can balance different perspectives without adversarial proceeding by ensuring diversity among its composition. Wilfond in particular said that it took him a while, but he had come to appreciate the role of disability studies perspective in his experience within the Working Group. But the problem is that no disability rights activists were invited to be part of the Working Group or the ethics committee for that matter, and the presence of some Ph.D.s and J.D.s with “disability studies perspective” were used as a smokescreen to mask the exclusion of disability rights activists.

Disability theorists such as Miller and Adrienne Asch, both of whom were part of the Working Group, might be able to provide alternative, critical perspectives on disability, but they are not substitute for dialoguing with disability rights activists. Even as Wilfond, Dudzinski and others continued to stress the validity of disability rights activists’ concerns, they had failed to invite a single activist to be on the Working Group or panel. I did not see any activists among the audience either, as they had so thoroughly excluded them, while paying lip service to activists’ concerns and to the importance of “disability studies perspective.”

After that, several mothers of children with developmental disabilities spoke out, many of whom had valid points. One woman said that when her disabled daughter grew larger than 4 ft. her dad could no longer lift her on his shoulder and take her out to a walk. A couple of women expressed understandable frustration at disability studies scholars who kept saying that more funding for services would solve the problem, while they wait many years with little help.

And even if resources were to magically appear tomorrow, it still won’t be enough: care providers and assistive technology can be helpful, but even in ideal circumstances they are not the same as being able to be alone with just family members, lifting the child with one’s own hands. Disability studies assumes that disadvantages faced by people with disabilities can and should be remedied by social change, but parents are suspicious of disability theory because they see a real weakness of this proposition. And they view growth attenuation is the solution.

Which is why I feel conflicted about the whole issue, and I am willing to accept that growth attenuation is not an absolute evil per se. But I fear the social and political impact of the wide-scale adaptation of growth attenuation as an ordinary part of contemporary society, with more children undergoing hormonal restructuring of the body for having developmental disabilities. I fear that what may be utility-maximizing on an individual level may, in aggregate, lead to a society where bodies are shaped for the sake of convenience. I fear that people with disabilities would be further pressured to reduce the burden they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the criteria for eligibility. And disability rights activists are virtually excluded from the whole process!

But this all seems inevitable now, and I’m not sure what we can do to limit the use of growth attenuation… Any ideas?

<shameless self-promotion>
(Hey people by the way… My one-day trip to Seattle cost me about $80 and that’s a lot of money for me since I have very limited income… If you like what you see here, I’d appreciate it if you could chip in a little (paypal to emi at eminism dot org). Also, if you are in college, please try to get some student organisation or department to bring me out to speak there.)
</shameless self-promotion>

Perhaps what we need is a truly feminist “pro-life” movement.

Date: January 18, 2009

On this National Sanctity of Human Life Day (which is one of those last-minute proclamations that George W. Bush is pushing through while nobody is paying attention to him), I went to the Pioneer Square Park to observe Oregon Right to Life’s anti-abortion rally and the counter-rally organised by Radical Women/Freedom Socialist Party.

Well, the rally was pretty big. I think there were a thousand people or two, which may not seem that large to some, but I haven’t personally been to many rallies that are so big in Portland. I walked around the square, reading and taking pictures of the signs people were holding, as it has become my personal anthropological research project to survey political rhetoric at political rallies. Some slogans I found on banners and signs that appear to have been provided by the organisers are:

“Stop Abortion Now”
“We Are Women Hurt by Abortion / We Are Silent No More”
“A Pregnant Woman Needs Support Not Abortion”
“Pro-Choice is No Choice for the Unborn”
“As a Former Fetus I Oppose Abortion”
“Women Deserve Better than Abortion”
“Vote Pro-Life”
“Abortion Stops a Beating Heart”
“I Regret My Abortion”

In addition, I saw many homemade signs that participants brought:

“Abortion is a Failure of Love”
“Peace in the Womb”
“Peace Begins in the Womb”
“Right to Choose? Or Right to Be Used?”
“Abortion is the Leading Cause of Death!”
“Human Life at Conception = Biology, Not Opinion”
“Abortion Kills Children”
“Love’s Choice is Life”
“A Person’s a Person No Matter How Small – Dr. Suess”
“Planned Parenthood Kills Babies”
“Adoption Not Abortion”
“How Can You Not Love a Baby”
“Margaret Sanger was a Racist”

I make the distinction between the two types of signs, because I assume that the statewide “pro-life” group, which is an affiliate of National Right to Life Committee, uses focus groups and marketing techniques to pick slogans that prove to be most effective, while individual participants basically put on their signs what each person feels is important or witty. In other words, if homemade signs are a window into abortion opponents’ psyche, professionally produced signs show what messages appeal to a wide audience.

Looking at the list of official slogans, the pattern should be obvious: the blatant co-optation of feminist rhetoric and sentiment in defense of women, which is employed to advance a political goal that deprives women of their constitutional right. As one speaker at the rally said: “we must defend our right to choose life” by prohibiting abortion. Apparently, the coupling of social conservativism with the public display of compassion (“compassionate conservativism”!) is still effective, or else they would not be using it in their signs.

In the meantime, here are some of the signs I found on Radical Women’s side:

“We Will Not Lose the Right to Choose”
“General Strike for Queer Rights”
“Not the Church, Not the State, Women Must Choose Their Fate”
“Pro-Life Bigots Stay Away! Abortion Rights are Here to Stay”
“Keep Abortion Legal!!”

I’m pro-choice, so I happen to agree with these positions–but I find these signs to be too legalistic and archaic almost, lacking persuasive power. At least, it offers nothing to the woman who was holding the sign “I Regret My Abortion” on the other side of the street. While the “pro-life” side is co-opting compassionate faux-feminist rhetoric to court supporters, the real feminists are failing to attract women who are not already “one of us.”

Pro-choice feminists tend to think of the abortion debate in strictly legalistic terms: the question is simply whether or not the State should stop women from choosing abortion. One could justify abortion rights on the basis of individual’s right to privacy or even on the basis of gender equality (i.e. no undue burden on one sex over another), but the bottom line is: there will be greater tragedies and injustices unless abortion is made available legally, regardless of how we might personally feel about it.

Some feminists oppose abortion on moral grounds, but does not believe that the State should enforce her morality on others, either on principle (i.e. State must remain neutral on the matter of morality), or because, as I wrote above, prohibiting abortion would lead to greater tragedies. Many feminists also recognise that abortion is not desirable, even as they support women’s legal right to have one, and work toward reducing the need for it. These stances do not make someone “pro-life,” because, in pro-choice feminists’ construction, being “pro-life” is not about supporting life, but about opposing the legal option of abortion.

But many people do not share these strictly legalistic definitions of “pro-choice” and “pro-life.” When thinking about abortion, many people–especially women–do not just think of just a woman and her body; they think about a woman and the fetus, and it offends them when feminists suggest that a fetus is just “lump of cells”–they agree with “it’s not a choice, it’s a baby.” And they feel sympathetic when they see “I Regret My Abortion” and “Women are Hurt by Abortion.”

The “pro-life” political movement has kept the meaning of “pro-life” deliberately ambiguous, and it is working to their advantage. Who isn’t for “life” after all? It is easy to point to the hypocrisy of their support for the death penalty-loving, war-mongering administration as they scream “right to life,” or their opposition to comprehensive sex education that could reduce the number of abortions that have to be performed, but I worry that the debate is framed to favour the anti-abortion side.

Perhaps what we need is a true feminist “pro-life” movement, which is concerned about women as well as (although not necessarily to the same degree) their fetuses, and for that reason works to end abortion, not by prohibiting it, but by combating unwanted pregnancies, poverty, prejudices toward and lack of publicly funded care for people with disabilities, sexual assault, etc. There certainly seems to be an opening for it. Sure, Feminists for Life already exists, but its positions are no different from traditional “pro-life” groups that employ superficially pro-women rhetoric: it focuses on making abortion unavailable through legal changes, rather than addressing economic and social conditions that make so many abortions necessary.

Pro-choice feminists would insist that such “feminist pro-life” movement is in fact pro-choice, and they are of course technically correct. But wouldn’t we make better pro-lifers than the “pro-lifers” themselves?