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Reclaiming Harm Reduction: a new zine released in time for the Harm Reduction Conference

Date: October 30, 2016

Just in time for the 11th National Harm Reduction Conference next week, I am announcing the publication of my new zine, “Reclaiming Harm Reduction: a collection” which compiles my writings related to harm reduction philosophy (excluding my numerous writings on sex trafficking and sex trade, which have been published in other zines). The new zine is available for order from my new online store.

zine cover

Here’s the introduction from the zine:

This booket/zine is a collection of my writings on the topic of harm reduction in my almost 20 years of activism.

Aside from the fact that I am presenting at the 11th National Harm Reduction Conference in San Diego next week (November 3-6, 2016) and wanted share my thoughts with people I meet there, I had a couple of reasons to compile some of my writings on this topic:

First, I live in Seattle area, where the phrase “harm reduction” has become a buzz word among people in the governemtn as well as in social service providers, which is welcome but its actual meaning is often lost in translation: many service providers use the term “harm reduction” when they simply mean that they don’t automatically exclude clients who are currently using drugs, but continue to have judgmental disdain for them or push a vision of “recovery” that does not reflect the needs or wishes of actual individuals who are coping with difficulties in their lives in the best way they know how.

Second, connected to the first point, I feel that harm reduction can be a lot more than just “a better way to deal with drug problems.” Drug use/abuse/addiction has not particularly been an issue that I deal with in my own personal life, but I encountered many of the similar failures of systemic responses to social problems, such as homelessness, violence against women, sex trafficking, and racism/classism/ableism/homophobia/transphobia/etc. In fact, harm reduction is the analysis that connects my involvement in various social justice movements, including advocacy of survivors of domestic and sexual violence, sex workers, intersex people, people with disabilities, and others. I wanted to compile a collection of my writings in these different movements to demonstrate a potential scope of harm reduction as a foundational philosophy and perspective.

That said, I also encountered limits of harm reduction, which I discuss in one of the essays included in this collection. While harm reduction helps us promote social interventions that meet the immediate needs of communities and individuals facing difficulties, it does not necessarily and automatically address the larger context of injustices in which these difficulties occur.

An example of this limitation that I address in the aforementioned essay is a suggestion that the distribution of condoms to U.S. military service members was a successful harm reduction program to reduce the spread of venereal diseases. While I agree such program may reduce the risk of venereal disease among U.S. soldiers, it does not address the violence of U.S. military interventions around the world itself, or the sexual violence too frequently perpetrated by the members of the U.S. forces against native women and girls. If anything, it might enable the U.S. to more efficiently and aggressively pursue military interventions across the globe that ultimately may result in more harms to the nations and peoples the U.S. decides to invade.

Harm reduction without an intentional commitment to the broader social and economic justice agenda can be reduced to a mere technology of population management. There are “harm reduction” housing programs in various cities where drug dealing and use are completely unregulated and unsupervised under the guise of “meeting where people are at,” where residents die from overdose every week without anyone outside of the building even taking a notice. Harm reduction should not be our communities’ excuse for being indifferent: while ultimately respecting how members of our communities choose to live, we cannot stop advocating for a better living environment for all of us, rather than simply pushing some of us aside in “harm reduction” ghettos and forget about them.

Essays collected in this booklet/zine span over 15 years of my writings, so some of the circumstances have changed since I wrote about them (I intentionally left out many writings that critiques the anti-trafficking movements because there are too many and I have compiled them into other booklets/zines). My thinking has also evolved in some of these areas as well. But overall, a commitment to harm reduction combined with social and economic justice continue to motivate my research and activism and it has only become more solidified if not sophisticated.

Thank you for picking up this collection, and I would like to hear what you think about them, or learn what else you are working on. Please feel free to contact me in any of the following ways:

Emi Koyama
PO Box 40570, Portland OR 97240
Twitter: @emikoyama
Facebok: emigrl2

Table of contents:

What is “intersex”? A response to June42, a woman with Turner’s syndrome

Date: February 14, 2013

This week, someone named June42 contributed a guest post about how she views her place as a woman with Turner’s syndrome in (radical) feminist movement on the controversial lesbian-feminist activist and attorney Cathy Brennan’s blog.

As a long-time activist involved in the intersex movement (former staff at Intersex Society of North America, director of Intersex Initiative, and board member of Advocates for Informed Choice) I wanted to respond to June42’s post as well as to some of the questions that are coming up from readers. But Cathy probably doesn’t want me to comment on her blog, nor do I want to comment there either, so I decided to post my response here.

(In case you are wondering why: I never had any hostile interaction with Cathy before, but last June I saw her attacking a trans woman I know by intentionally using what I thought was her pre-transition (male) name. I wrote to Cathy: “I don’t know if that’s her previous name, but using it feels creepy and reminds me of stalker behavior, not to mention silencing. Say whatever you will about her politics or behavior, but can you please stop that?” She responded “Um, no. ***** [the trans woman’s previous name] is a liar. We point out MISOGYNISTS who THREATEN FEMALES. ***** is one of them. Also, fuck you.” After that, I decided not to interact with Cathy any further.)

I appreciate that June42 is sharing her story, and I agree with her feminist analysis that the medical treatment of intersex conditions (I will discuss more on that category later, so for now please think of it tentatively as a shorthand for any condition that might be considered intersex under some definition) is based on the society’s (which is to say, straight men’s) assumptions about “healthy” or “normal” sexuality and gender relations that are deeply sexist and heterosexist. I also agree that the intersex medical “management” is often experienced as traumatic and damaging by many patients, especially children (see my article, “Intersex Medical Treatment and Sexual Trauma.”)

I am particularly sad that June42 has experienced what disability activist Lisa Blumberg has called “public stripping,” or intersex activists have called “medical display”: a procedure in which children with rare medical conditions are routinely stripped naked or near-naked and exposed to a room full of doctors, interns, medical students, and others, as if it is a freak show. I have known many people with intersex and other medical conditions (like neurofibromatosis) who had to go through this experience, and many report that it was the most traumatizing and shaming aspect of their medical treatment, more so than medically unnecessary genital surgeries. I am sorry that June42 and some other women with Turner’s also had to experience it. And disability and intersex activists are certainly carrying the torch of feminist revolution, as June42 suggests, when we problematize the medical gaze that reduces our organs and bodies to objects to ogle, study, and manipulate.

Now, the difficult question: is Turner’s syndrome an intersex condition? June42 writes that Turner’s syndrome is “incorrectly described as an ‘intersex condition’ by some ‘Queer’ gender theorists,” showing their “complete misunderstanding of [Turner’s syndrome] as a condition,” but it seems to me that queer theorists are more often wrong, generally, about what intersex is, rather than whether or not Turner’s syndrome fits in there. June42 points out, correctly, that the vast majority of women with Turner’s syndrome view themselves as women, and consider the labeling of their bodies as “intersex” to be “profoundly damaging to women […] whose sense of themselves as women has already been undermined.”

But it is not just women with Turner’s syndrome who feel this way; most women and men with intersex conditions do not use the label “intersex” to describe themselves, and often do not consider their condition to be part of the “intersex” umbrella.

There are a couple of problems here. First, there is no single, agreed-upon definition of the term “intersex,” and doctors do not even agree with each other about it–for example, geneticists are more likely to consider Turner’s syndrome as an intersex condition, but endocrinologist or urologist might not. There are only a couple of conditions that pretty much everyone agrees are “intersex,” and the rest of dozens of conditions may or may not be included depending on the definition. That said, the “Consensus Statement on Management of Intersex Disorders” which was adopted by Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology does include Turner’s syndrome as a “sex chromosome DSD (disorder of sex development–the term replacing “intersex” within the medical community).”

Second, and more significantly, there is a problem with the word “intersex” itself, which implies that it describes someone who is neither male or female but is something else in between. As June42 points out, this impression is harmful to many people with intersex conditions who do not view themselves as anything other than men or women who have particular health and reproductive concerns. In fact, this was one of the reasons many patient groups and families welcomed the introduction of the term “DSD,” even though many are not entirely happy about the stigmatizing term “disorder” in the new acronym.

The mistake queer theorists and activists often make (as Judith Butler did in her 2002 paper, “Doing Justice to Someone“) is that they do not attempt to understand or address actual lived experiences of people with a specific intersex condition, but treat “intersex” as a homogenous group, or worse, a theoretical tool to advance their own theories about social construction of gender and sex (see my old paper, “From Social Construction to Social Justice: Transforming How We Teach about Intersexuality“).

I use the term “intersex” not as a gender or an identity term, but as a political term, to address commonalities of our experiences of sexism and heterosexism as they inform the medical mistreatment of people who have “different” bodies, particularly those that affect sex development and reproduction. I do not personally identify as an “intersex person” because “intersex” is not an identity label for me, and would not call anyone that way unless they actually identify as such (that said, I sometimes use “intersex person” as a shorthand–and I apologize if I’ve done that to any of you). But I do identify as an intersex and disability activist as well as a feminist, because what I experience in medicine has a larger context that I share with those who do not necessarily share my exact condition.

In the meantime, people who do not have any of these conditions should stop arguing whether a particular condition is intersex or not. Instead, they need to listen to people with these conditions to understand their specific concerns–some of which are similar across various conditions that are considered (and sometimes not considered) intersex, while others may be more unique to people with that particular condition. And generally understand that if you keep talking about “intersex people,” you would in effect exclude many people whom you intend to include (read What Is Wrong with ‘Male, Female, Intersex'”).

European Court case over reproductive rights in Poland deals with the selective abortion of a fetus with Turner’s syndrome

Date: May 27, 2011

On May 26th, European Court of Human Rights ruled in favor of a woman in Poland who was systematically denied the opportunity to receive and find out the result of diagnostic test for her fetus in time to selectively abort the fetus. Pro-choice activists celebrate the ruling as a victory for the women’s right to choose.

But the fetus’ condition in question is Turner’s syndrome, which is hardly a deadly disease or totally debilitating condition. According to Turtle Bay and Beyond, a international law blog (from the Religious Right perspective, which I disagree with–but I’m just citing them for factual information) :

The applicant, Mrs R. R. gave birth to a girl suffering from “Turner Syndrome”, a chromosomal abnormality affecting girls, whose symptoms are generally a short stature and sterility. She unsuccessfully requested the prosecuting authorities to institute criminal proceedings against the physician involved in handling her case. Mrs R. R. claims that she has been subject to degrading treatment (art. 3) since she was unaware of the health of her pre-born child and was denied the genetic tests in a timely manner.

I am preparing to travel to San Francisco in four hours so I don’t have the time to fully analyze or respond to the case, but I just want to point out that there is a complicated history of dialogues between reproductive rights movement and disability movement over cases like this, which appears to be completely ignored in the celebratory tone of the pro-choice groups’ responses.

Without going into whether or not a woman’s right to choose extends to the right to selectively abort fetuses on the basis of its real or perceived disabilities (or sexual orientation, etc.), pro-choice activists need to recognize that this is a complicated matter and take special care not to imply that people with Turner’s syndrome or other conditions and disabilities do not deserve to live.

Further, if we truly believe in women’s right to choose, we need to work toward eliminating societal barriers to raising children with various conditions and disabilities or to living with such conditions. The birth of a child with Turner’s syndrome does not need to be a tragedy to be avoided at all cost.

Three new updates to “Interchange” on prostitution, intersex, and trans issues

Date: May 26, 2011

I don’t usually report site updates on this blog, but I’m making an exception because 1) there are three new documents, and 2) people who are reading this blog these days might be interested.

The additions are in the “Interchange” section, which archives my contributions to mailing lists and message boards. It should have been a blog, but I started it long before “blog” was a common word or concept (remember “weblog”?), and content management systems were primitive. Anyway:


Recommendations on Medicaid funding of surgeries for intersex individuals

Date: July 23, 2010

Recommendations for Colorado Department of Health Care Policy and Financing
Re: Medicaid Funding for Remedial Surgeries for DSD

Emi Koyama
Director, Intersex Initiative

My name is Emi Koyama and I am the director of Intersex Initiative, a national advocacy organization for people born with intersex conditions, or disorders of sex development (DSD) as they are referred to within the medical community.

I have studied the draft Colorado Medicaid Policy titled “Disorders of Sexual Development (DSD or intersex) Surgical Remediation,” and wish to offer following recommendations.

1. First thing first: the correct medical term is Disorder of Sex (not “Sexual”) Development. (And when not referring by this established medical terminology, I prefer to use “anomalies” over “disorders.”)

2. Philosophical statement must make a clear distinction between “gender assignment” which is a social and legal determination of one’s sex of rearing, and surgical reinforcement of the assigned gender. The controversy is not whether or not children should be assigned gender: it is whether social and legal assignment of gender should be accompanied by cosmetic surgical alterations of the child’s genitalia before the child is old enough to be involved in the decision-making. I believe not.

3. The philosophical statement also seems to presume that the main risk of early cosmetic genital surgeries is the accidental assignment of the “wrong” gender. While this is a major concern, it is not the only one. Any surgeries on such sensitive areas risk damaging the child physically, psychologically, and sexually–which is why advocates argue that they should not be performed without the child’s participation, unless of course there is an urgent medical necessity. Perhaps Medicaid is not able to take either side of this controversy at this point, but critics’ concerns should be accurately reflected in the document.

4. I applaud the draft for acknowledging the need for multidisciplinary approach to treating children with DSD. That said, if Medicaid were to recommend multidisciplinary team to care for these children, it must also provide payment for counselors, psychologists and social workers who will assist patients and parents as part of the multidisciplinary team. Counseling for parents or other caregivers is a critical part of providing competent care for children with DSD.

5. Some surgeries performed on children with DSD result in sterilization. The policy statement should specifically require any parent or physician seeking these surgeries to be extremely cautious and abide by all existing State laws and Medicaid regulations on sterilization on minors or legally incompetent people in order to protect the rights of children with DSD.

6. Medicaid is mandated to cover out-of-state medical expenses as well as travel expenses for the patient and the accompanying parent if providers with adequate experiences or specialization in the specific procedure being prescribed cannot be found in the State Medicaid system. The policy statement should include this information instead of simply stating that “The provider must be enrolled with Colorado Medicaid.” Further, funding for in-state medical travel should be included as well if a qualified provider cannot be found in the immediate area where patient and his or her family live.

7. “Gender transformation surgery” does not encompass a wide range of surgical procedures performed for children with DSD with or without the assent of the patient (e.g. vaginoplasty for a female with DSD does not transform her gender in any way, but simply reinforces it). The statement should state that all medically recommended surgeries are covered, preferably with the assent of the patient himself or herself, in addition to the “gender transformation surgery.”

8. I support Colorado’s leadership in acknowledging that “gender transformation surgery” should not be rushed at the time of birth. However, the timing of the surgery should not be limited to just two options (at birth or at puberty). At minimum, Medicaid should cover such surgeries that take place anytime in the patient’s adolescence and even young adulthood, allowing full time for the individual to explore and develop a sense of who he or she is.

9. The sentence denying coverage for “trans-sexual surgery” is unnecessary and potentially harmful. The next revision of Diagnostic and Statistical Manual of Mental Disorders (DSM) is expected to change the definition for Gender Identity Disorder (which is associated with transsexuality), allowing children and adults with DSD to be diagnosed with Gender Incongruence (a new name for GID). In other words, a child may be diagnosed with both DSD and GI, which puts two sentences in this policy statement (coverage for “gender transformation surgery” for children with DSD and denial of coverage for “trans-sexual surgery”) in conflict with each other.

Besides, whether or not Medicaid covers sex reassignment surgeries for transsexual people should be specified in a separate policy statement, and is irrelevant to the issues addressed in this statement. I believe that it is quite sufficient to state that “Gender transformation is not covered under this policy when the diagnostic criteria for DSD are not met.”

(Also, I fully support Medicaid funding for sex reassignment surgeries for adult transsexual people who seek them. I understand that this discussion is not the time or place to advocate for such policy change, but we cannot in good conscience be completely silent about the struggle of our transsexual friends and allies, many of whom have advocated for intersex rights.)

Thank you very much for giving me an opportunity to make these recommendations. I am also sending you a copy of the draft statement with suggested edits. Please feel free to contact me if you have further questions, as I would be delighted to provide more information.

Anne Tamar-Mattis, a California attorney and the executive director of Advocates for Informed Choice, said that she is also available to answer any questions. Her phone number is XXX-XXX-XXXX and email address is XXX@XXX.XXX. In addition, Nancy Ehrenreich is a Professor of Law at University of Denver’s Sturm College of Law, and is knowledgeable about legal issues surrounding surgical treatment of children with DSD. Her phone number is XXX-XXX-XXXX and email address is XXX@XXX.XXX. They may be able to offer further insights that I am missing.

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…

Intersex people are from the Earth, and other stuff beyond patriarchy.

Date: May 6, 2008

I’m going to Eugene this Friday to present at Beyond Patriarchy conference. I was originally planning to do two workshops (one on intersex activism and another on sex worker feminisms) but due to my schedule (I’m hosting Good Asian Drivers‘ stop at In Other Words bookstore in Portland on Saturday) I can only do the latter. That said, I thought you might enjoy reading the description I wrote up for the intersex workshop:

Title: Intersex People are from the Earth

Description: Men are from Mars, women are from Venus, and yet they act like the Earth belongs to them. This workshop is for anyone who wish to learn about the Earth’s native species, intersex people, and their struggles.

Obviously, this is all tongue-in-cheek… Most intersex people identify and live as men or women just like most non-intersex people, so it’s not correct to assume that intersex people are somewhere between men and women… See “What is wrong with ‘Male, Female, Intersex’” at Intersex Initiative’s website.

Since I’m posting the information, here’s the description for the workshop I’m actually presenting:

Title: Class and Sex Worker Feminisms

Description: Sex industry and sex work have been sites of fierce contention within feminism. But too often, the discussions revolved around anti-prostitution feminists who depict poor and working-class women as voiceless victims (thereby silencing them), and pro-sex feminists who neglect them altogether (thereby silencing them) and focus on sex workers who are relatively better off. This discussion attempts to complicate the analysis by introducing class-conscious pro-sex feminist positions.

The workshop will be held at Century Room A, Erb Memorial Union at University of Oregon at 3:35pm on Friday.

Responding to Fetishist Emails

Date: February 29, 2008

Email I received at Intersex Initiative.

id love to meet a reallllllllllll hermorphadite in person. my email is ***** in *****.

The first “*****” is part of an email address; the latter is a name of a City.

I get these emails at least once a week. ISNA must receive it every day, if not every hour. I usually just ignore, but today, after an upsetting episode at Wal-Mart which they sucked me into with its $4/month prescription generic medication, I found some energy to respond. Here goes:

Hello sir–Too bad. I just called the World Council of Realllll Hermorphadite and had them add your name, email address, home address and social security number into The Blacklist so that no reallllll hermorphadite would fall prey to someone like you.

Just to clarify: I’m not against fetishes or fetishists. I’m against someone insensitive enough to send such email to an organisation that is trying to change the society so that intersex people would be treated as people, not just some object of others’ fantasy or being reduced to just the sex organs.