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Preliminary report on “Ashley treatment” (growth attenuation, etc.) symposium

Date: May 16, 2007

I just came back from Seattle, where I attended a symposium on the so-called “Ashley treatment”–a combination of hormonal growth attenuation, hysterectomy, and breast buds removal on a girl with severe developmental disabilities–at University of Washington. It was pretty intense, with some parents of disabled kids lining up to praise the “Ashley treatment” and demanding it for their own children. They were also extremely disingenuous–they insist that they are 100% looking out for the best interest of their children, and their own convenience or comfort has absolutely nothing to do with their request for this sort of treatment. I’d been able to have more empathy toward them if they were to express their own needs as caretakers, rather than masking them as the children’s.

It was also painful to watch doctors involved in this case, including the chair of the ethics committee that approved the treatment, totally exposing themselves to be ignorant of bioethics as well as the sterilization statute. They seem to think that their failure to seek court order before performing hysterectomy was a minor, procedural error, when in fact (as Anne Tamar-Mattis, director of Institute for Intersex Children and the Law said) Ashley was denied the fundamental right to have her interests represented by a guardian ad litem. They said, for example, that it would be useless to appoint a guardian ad litem because they won’t be familiar with the case and can’t possibly be completely neutral and balanced. But that’s not the point of the process at all: guardian ad litem is not supposed to be neutral or balanced, but to steadfastly advocate for the child’s bodily integrity, especially in sterilization case (it should be adversarial, i.e. the default position for an advocate is to oppose the procedure).

I’ll have a fuller report on the symposium tomorrow (or maybe the day after). I need to go to bed now, after four hours of Greyhound.

Going to Seattle for symposium on so-called “Ashley treatment”

Date: May 15, 2007

Anne from Institute for Intersex Children and the Law told me about the University of Washington symposium on the so-called “Ashley treatment” titled Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities this Wednesday, and I decided to attend it.

As some of you may already know, this case involves a six year old girl (now nine year old) with severe cognitive disabilities whose breast buds and uterus removed, and her future growth halted by hormone injection, so that her parents could continue to take care of her at home. The rationale goes that the parents would not be able to take care of her properly if the girl, who is said to have the mental capacity of normal three month old, and that she would suffer as the result of it.

Ever since the procedure was first publicized last October in a medical journal and reported in the news, disability rights activists, such as Feminist Response in Disability Activism, ADAPT, and Not Dead Yet have condemned the procedure, and called for a ban of similar treatment in the future. This past week, Washington Protection & Advocacy System issued an investigative report that found the hospital in violation of the state’s sterilization statutes.

I’ve been somewhat following the controversy (I blogged about the topic in my Japanese blog), but since yesterday (when I decided to attend the symposium) I’ve been reading lots of articles and opinions from disability activists, scholars, and others. Of all critiques I’ve read, Mary Johnson’s “Ashley’s Treatment in the Media” in Women in Media & News is especially insightful, and perhaps one of the few that actually addressed the gendered aspect of the discourse, along with the disability part.

On the other hand, Alice Dreger (as always) offers a very nuanced analysis in “Ashley and the Dangerous Myth of the Selfless Parent,” which points out how our inability to admit to selfishness in parenthood obfuscates the reality, making it harder to prevent egregious abuses of children’s rights. Exactly: once parents stop feeling guilty about being selfish sometimes, they can express their own needs as such, rather than what their children need. And then, we as the society can step in to provide meet that need for the parents, leaving the children unaffected.

There’s a lot of anger toward parents among disability activists, both to our own parents as well as to groups that represent the interests of the parents of disabled people and yet call themselves to be for the disabled (e.g. National Alliance for the Mentally Ill). These groups not only promote laws allowing forced medication, forced institutionalization, end-of-life decisions made by family members, etc. that diminish disabled people’s right to self-determination, but also claim that they are doing it for their disabled family members. It would be much more helpful, as Dreger suggests, if these groups became more forthright and admitted that they speak for the parents, not the disabled people themselves. Too many people don’t seem to understand that parents’ and disabled people’s interests are not the same. Sigh…

Anyway, I’m going to Seattle…

Meeting Filmmakers for “Emperor’s Naked Army Marches On”

Date: May 11, 2007

As previously discussed, I’m visiting the University of Chicago this week, doing two public lectures and two classroom appearances. Yesterday I went to a reception/dinner with students at the Center for East Asian Studies, where I unexpectedly met Kazuo Hara and Sachiko Kobayashi, the director and producer respectively of cult documentary film, “Emperor’s Naked Army Marches On” (read about it here).

I’ve only seen a small segment of the film, but as you can see from the description, the film is so provocative and unusual that I was almost shocked to find both Hara and Kobayashi to be quite reasonable, likeable individuals. I ended up chatting with them about how expensive and tiresome it had been to produce films in the past and how the availability of cheap video cameras and editing environments are changing the field of filmmaking, etc. Kobayashi-san also seemed to be interested in my work around disability and feminism, as she herself is disabled (I’m not sure if that’s how she’d describe, but you get the idea). I’ll have to see the entire film (and any other film of theirs that I can get hold of) once I get back to PDX…

As I go back to Portland this weekend, Hara and Kobayashi will be in Michigan showing some of their films at the University of Michigan, and there will also be a public talk session between Hara and Michael Moore, who has praised “Emperor’s Naked Army Marches On” which he saw while working on his first film, “Roger & Me.” Now that’d be interesting… I wish I were there.

Emi’s secret connection to J. Michael Bailey Exposed! Oh and she drinks the blood of infants too.

Date: May 10, 2007

Recently, person identifying herself as “Gina” has been appearing on various blogs that mention my involvement in the intersex activism, and making some bizarre allegations on me. One such example is found on the blog The Blind Bookworm Blog, which simply posted an announcement about my upcoming (tomorrow!) University of Chicago lecture on the topic. Here are Gina’s comments and my responses.

DSD is a term favored by medical interventionists and parents . It is not a term many Intersexed like used on themselves.

It’s true that the term is generally favored by medical professionals and parents. It’s also favored by many of the intersex patients’ groups, both activist and support groups. On the other hand, there is indeed a large number of intersex people who do not like the term, and that should be taken seriously. But it’s simply not true to say that intersex people generally reject the term. Gina doesn’t speak for the entire intersex people any more than I or any other person would.

You should look to Emi Koyomas conections.

Clearly, Gina never has. If she had, she would not be able to find any connection whatsoever to J. Michael Bailey in any way.

She is not intersexed and

It looks like Gina is the one who is deciding who is intersex and who isn’t, even though she alleges others of doing just that.

is conected to the discredited group from Northwest university that includes J michael bailey.

Gina has no evidence to support this. I don’t know J. Michael Bailey except for the fact I’ve read some of his controversial papers.

These people favor eugenics amongst other things.

I don’t know if J. Michael Bailey favors eugenics or not, but regardless of that it has nothing to do with me.

The DSD consortium are attempting to controll the definition of who is intersexed and who is not. Those that do not comply with their dictates are labeled Autogynophiliacs or homoerotic.

Well, it defines DSD as “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.” It’s actually a broader and clearer definition that the traditional “intersex.”

“Autogynephilic” and “homoerotic” Gina is referring to are two subtypes of male-to-female transsexuality proposed by Ray Blanchard and promoted by J. Michael Bailey. I can understand why transsexual people would be upset with Bailey’s claim that these are the only possible variations for transsexual women, and I would totally support trans activists challenging Bailey et al. on that. But still, that’s the controversy around transsexuality, not intersex.

Needless to say, if one has a DSD under its current definition, she or he does: that fact won’t change whether or not they “comply” or agree with the terminology in any way.

Besides, whatever her disagreement with DSD Consortium might be, I’m not part of the consortium or have any relationship with it.

Unfortunately, the controversy over the DSD term has brought about the kind of personal attacks as evidenced by Gina’s comment (and she has been posting similar attacks against me on other blogs as well).

Gina is not alone in disliking the term DSD, and I support her in expressing her opinions. But she has no right to spread lies and ridiculous conspiracy theories about other intersex activists whom she happens to disagree with (that said, I’m not even sure if she actually understands what my positions are to begin with, since she continues to attribute things to me that I had nothing to do with). If she is going to allege that I associate with J. Michael Bailey or that I endorse eugenics, she needs to produce evidence–so far, absolutely none has surfaced.

Oh by the way, Lynn Conway’s website that Gina speaks about is this:
http://ai.eecs.umich.edu/people/conway/conway.html

As you see, you won’t find it mentioning my name at all (Google couldn’t find it). So whatever position she thinks the site might support, it doesn’t support anything she alleges about me.

Going to Chicagoland (this week, then the month of June)…

Date: May 6, 2007

On Tuesday, I’m leaving for Chicago to give two lectures at University of Chicago. My talks are part of the Celebrating Protest series, which has been bringing in various progressive activists and artists from Japan as well as from within the U.S. (like myself). Here’s the info on my talks:

Wednesday, May 9 at 5:00pm
“Colonialism, Militarism and the Political Economy of Transracial Adoption”
Pick Lounge, Ground Floor, Pick Hall, 5828 S. University Ave.

Friday, May 11 at 12:15pm
“Intersex at the Intersection of Queer Theory & Disability Theory”
Conference Room, Center for Gender Studies, 5733 S. University Ave.

Also Chicago-related: I’m thinking about spending the month of June in Chicago area, and looking for an apartment I could sublet for the month. I’m hoping that perhaps some student would go home for the summer and might be needing someone to pay the rent for them… Due to my disability, it needs to be on the accessible level (I can manage some steps); and also it needs to be close to public transportation. If you have a lead, do email me with the info.

Google Checkout option is gone

Date: April 30, 2007

I received an email from Google Checkout. Below is an excerpt from the email:

During a recent review, we found that your website accepts donations. In accordance with Google Checkout policies, you may only use Google Checkout to process donations if your business has a legitimate tax exempt status and displays this status publicly. It appears that your business doesn’t have a legitimate tax exempt status. As a result, your pending donation orders have been cancelled.

Sure enough, Google’s list of items prohibited includes “Donation solicitations from parties without a valid 501(c)(3) tax exempt status clearly displayed to the public,” along with other things, most of which are either illegal or regulated.

I’m assuming that the concern for Google is that individuals and organizations would use Google Checkout to solicit donations fraudulently for personal gain. But I don’t agree that 501(c)(3) status is the only legitimate way to run social justice projects. In my involvement with many 501(c)(3) non-profits, I’ve come to realize that it tends to create ineffectual bureaucracy, and take away resources from smaller, more radical activist projects. Once dominated by larger 501(c)(3) groups with highly paid professionals as executives, their goal changes from creating solutions to social problems to simply supplementing the state in its effort to maintain status quo–and the movement dies.

I’ve chosen to run my organization, Intersex Initiative as a private entity without any government, foundation or corporate grants in part because I don’t like doing paperwork, but also in part because I didn’t want to turn it into yet another bureaucracy. It is primarily funded through giving lectures at various universities, and also by keeping it cheap (I work out of my own Studio apartment, etc.).

So anyway, I’ve removed Google Checkout as a payment option for all of my websites, including this one. Congratulations, Google!

I went to Brown University, but it was actually White

Date: April 25, 2007

I heard from someone at Brown University (where I gave a lecture earlier this month) that some people are spreading the rumor that I said something that supported “normalizing” genital surgeries for intersex children. I am completely puzzled by this–after all, below is an excerpt from the talk I gave:

While some of these children have come to identify as boys or men later in their lives and are rightfully upset about the feminizing surgeries done to them, that is not the only or even the most fundamental complaint we have about infant genital surgeries. We oppose these surgeries because there is a risk every time a knife hits flesh, including risks of infection, loss of sensation including sexual sensation, and the possibility that repeated surgeries would be required later, in some cases over a dozen times. We oppose them because children aren’t given any choice over what is being done to them, and are often not told about what had been done to them. We oppose them for the pattern of secrecy and shame that surgeries trigger.

Feminizing surgeries often involve removal of all or part of what doctors consider enlarged clitoris (clitoridectomy), and the creation of vaginal opening (vaginoplasty). It should be obvious to us today that clitoridectomy is harmful to a woman’s sexual well-being, but mostly male doctors who came up with the idea back in the 1950s apparently did not realize that clitoris played an important role, assuming that women derived sexual pleasure either exclusively or primarily from being vaginally penetrated. We could laugh about their backward sexist and heterosexist ignorance if it weren’t the case that many mostly male, mostly heterosexual doctors continue to believe that it is possible to remove the “shaft” of an enlarged clitoris, while preserving its “tip,” to reduce the size of clitoris without sacrificing sensation. It’s incomprehensible that such a myth continues to survive and is being used to justify what they now call “clitoral reconstruction surgery,” (which is sort of like U.S. forces “rebuilding” Iraq), when no sane doctor would suggest that men only get pleasure from pressures on the tip of the penis, and that the shaft is irrelevant to male sexuality.

Similarly, vaginoplasty is promoted as a necessity on the same sexist and heterosexist presumption about the female body. The procedure actually involves surgically creating an opening between the patient’s legs, then keeping the vaginal walls from sticking back together over next several months, since human bodies naturally heal, like earring holes would close up if one doesn’t wear piercing to hold it open. When adult male-to-female transsexual women decide to have vaginoplasty on their own choice, they would need to “dilate” their surgically created vagina with a medical version of dildo for certain length of time every day over several months. But when vaginoplasty is performed on infants and young children, parents–usually the mother–would need to insert some foreign object into the child’s vagina every day, even as the child scream from the pain on her recently wounded flesh.

Does that seem like a lecture supporting surgeries?

It turns out that the person who is spreading the false allegation did not even attend my talk. That figures.

In the meantime, I wrote a draft of the FAQ on the controversy over the term “DSD” (disorders of sex development). Please take a look, and give me feedback.

Cyborg isn’t a good metaphor for everything

Date: April 20, 2007

I went back to the annual meeting of the Cultural Studies Association, this time to see this particular panel on various applications of the cyborg theory. I’m not all that into cyborg theory (after all, I haven’t read much beyond Donna Haraway’s original Cyborg Manifesto, which is almost 20 years old and I’m sure that the theory has since evolved considerably), but what caught my attention was the title of Maura Daly’s paper, “Pain at the Interface: Thinking about intersex as cyborg embodiment.” When I searched for her name, a bio came up, which mentioned that she was writing a book called “Technologies of Intersex.” The title sounded like one of those typical Cultural Studies texts in which real people are reduced to theoretical device to advance abstract ideas, and I dreaded having to confront it.

To my surprise, Daly’s presentation turned out to be extremely sensitive to the fact that intersex is a lived experience for real people rather than just some concept or theoretical point to be made, and she was well educated in the latest development in the field as well. Daly explained that she had wrote her dissertation on cyborg theory and approached intersex thinking that it would be a good subject matter to apply it, but as she learned more about intersex, she began to question if cyborg really was an appropriate metaphor here. It made me happy: when a scholar commits to a particular theoretical position or mode of inquiry, it’s easy for her or him to view everything as objects to be analyzed or explained using that particular tool. That Daly was willing to question and possibly abandon the theoretical tool she was familiar with shows her dedication to ethical scholarship in relationship to real, live people it may impact.

Which is not to say that intersex doesn’t raise interesting questions to the cyborg theory: for example, intersex as a cyborg embodiment is said to challenge dichotomized and naturalized sex categories, and yet such notion itself carries, ironically, a strange sense of essentialism, that for intersex bodies to occupy the in-between space (i.e. forgo surgical technology) is “natural.” Similarly, Haraway criticizes older feminisms’ yarning for organic “wholeness”; and yet, much of the intersex movement is driven by such yarning. But when the discussion headed into theoretical direction, Daly was careful to clarify that most people born with intersex conditions actually identify and live as ordinary men or women, and that being born with an intersex condition therefore doesn’t imply occupying the social space between males and females. “Most people identify as male or female,” she said, “because it’s torturous not to.” In the end, Daly said that perhaps more complicated analysis is needed to properly address intersex embodiment than cyborg theory’s critique of “natural body” and “wholeness.”

Another part of the presentation I was intrigued by is how intersex movement is committing itself to more medicalizing discourse in order to transform the treatment–and it’s far more complicated than the recent controversy over the term “DSD” (disorder of sex development) versus “intersex”: for example, when we criticize clitoral “reduction” surgery because it “reduces sexual sensation,” where sexual sensation is scientifically measured and compared to the control group, we are in effect medicalizing our dissent. Of course it’s more effective, but nonetheless something I feel is important to keep thinking about.

Anyway, I was very glad that I attended the panel. Daly said that she was worried about misrepresenting intersex people or doing something wrong by writing about it, but it is precisely people like her who should write about it. There are scholars who don’t care about the real world impact of their scholarly work and there are those who do: the former don’t care about what we think, so they keep publishing stupid papers; the latter often are too afraid of making mistakes to actually write. I encouraged Daly to write about her own process of approaching the topic of intersex with a predetermined agenda (i.e. showcasing cyborg theory) and how her goals have transformed as the result of learning about the issue, because I feel that other scholars should definitely emulate her in this regard.

It was my first year at the Cultural Studies Association

Date: April 19, 2007

Today I went to hear the first plenary (“Ethics and Environment”) of the Cultural Studies Association annual conference, which conveniently is happening in my home town, Portland. Panelists were: Jill Casid of University of Wisconsin; Andrew Ross of New York University; and Devon Peña of University of Washington.

Casid introduced me to a subject entirely foreign to me, which is the burgeoning industry of Caribbean cruse ships. Tourism’s relationship to colonialism has been heavily theorized and critiqued, but this particular subsection of the tourism industry seems to go extreme length to Give Customers What They Want: tropical wonderland away from cold rainy North American cities, while keeping tourists completely safe and protected from potentially dangerous terrain of the actual, unfiltered Caribbean world. Tourists are taken to various ports across the Caribbean, complete with duty-free shopping malls that have been specifically built for the cruise ship travelers; in some places entire ports are being built just for them. Of course, these mega-Disneylands are built by the same companies that bring the customers there to maximize the profit for the Western tourism industry.

Comparison can be made between these tourist honey-pots to the colonial plantation of the past (and present) but I almost feel that it’s better that the tourists are kept in their own ports and shopping malls instead of invading where locals live: it’s less disruptive, even after accounting for the land being taken away to make room for them. One of the concerns is that the money spent at the tourists-only shopping malls don’t benefit the local economies, but I would think that reliance on tourist dollars would weaken the local economy, rather than strengthening it.

Ross spoke about the contradiction and unintended consequences of urban sprawl policies and how it impacts housing problems (especially, lack of low income housing), as well as its relationship to anti-immigrant rhetoric. Years ago I was part of this “task force” on gentrification, which was a huge concern for me since I’ve had to move out of house four separate times due to the change of ownership, but the politics of urban development continues to confuse me. I suppose that the reason it’s so confusing is because we are largely talking about unintended consequences of well-intentioned policies (e.g. rent control laws resulting in lack of low-income housing, or development to enrich communities of color resulting in higher rent, which in turn push many people of color out) and innocent individual choices.

As Ross mentioned, Portland is often cited as one of the most successful of the “smart growth” cities–that is, a city that limits urban sprawl through land-use regulations. At the same time, it is more expensive to rent than “dumber” cities, which pushes low-income households out. One of the very convincing argument against sprawl had been that it would segregate residents by race, class and income levels–and yet, anti-sprawl measures may also have the same consequence! No wonder it’s so confusing…

Last but not least, Peña presented about the 14-acre community farm in South Central, Los Angeles, which was started shortly after the Rodney King riot and closed down last year by the land owner (they raised money to purchase the land, but the landlord refused to sell and evicted them). The story was truly remarkable–so much so that I sort of became a little bit suspicious that he might be glorifying it too much. Of course even if there were some problems that he chose not to discuss in this presentation, that doesn’t mean that their attempt to build an environmentally-aware, democratic, self-sustaining collective farm for indigenous Mesoamerican people isn’t valid or crucial (ooo, double negative!)…

Someone from the audience asked Peña in the question and answer time what the difference between someone from Mexico bringing in seeds from Mexico to grow food they are familiar with and the colonialists transporting sheep or tea or coffee or whatever to plantation in the global South was. Huh? Well, a collective farm is not a plantation, Mexicans are not foreign to the land, and they are making food that they themselves eat. In other words: they are very very different, period. How superficial must someone be? But I was also weary of Peña’s response: for example, he mentioned that the seeds are for the species that are native to North America so farmers weren’t introducing any new species, just “different alleles”–but that different allele may cause a huge impact in the surrounding environment, and is a valid environmental concern.

Bitch magazine digs “Disloyal to Feminism”

Date: April 17, 2007

In the new issue of Bitch: Feminist Response to Pop Culture (No. 35), Keidra Chaney says something nice about my contribution to Color of Violence: The INCITE! Anthology:

[…] The range of contributors is both the book’s greatest strength and its weakness. Some of the weaker essays rely too strongly on anecdotal accounts and individualistic analysis, rather than critical inquiry; many read more like position statements, reflecting their conference-presentation origins. The best essays, however, combine anecdotal and personal experience with nuanced critical analysis, such as “Disloyal to Feminism: Abuse of Survivors within the Domestic Violence Shelter System,” in which Emi Koyama deftly melds her own experience as a domestic violence shelter worker with short vignettes that critique the criminalization that occurs from within the battered women’s shelter system. […]

Thanks Keidra! :-)

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