Labels, labels, labels!

This weekend, I attended the LGBTQIA conference at the University of the Pacific, a biannual event that draws hundreds of people from throughout California. At this conference, I presented an overview of findings from my research for my upcoming book, Fringe: On the Edges of the Mainstream Gay Community. The room was packed. There were people sitting on the floor. I stayed for half an hour after my session ended to talk to a line of people. “I don’t think they liked it very much,” one of my colleagues joked afterwards.

Then there was The Question. The one I didn’t have a great answer for. “Did you consider interviewing someone who identifies as asexual?” she asked. I had not. Because, in fact, I don’t know anyone who openly identifies as asexual. I didn’t at that particular moment, anyway. Throughout the conference, I met several people who identify as asexual. I met another person who is a demisexual panromantic poly female. I met another person who described herself as an “amoeba.” I heard the terms “gray-A,”, “nonlibidoism,” and “queerplatonic.” I’m embarrassed to admit that I wrote these terms down and Googled them later, because I had no idea what they meant – and, like entering Narnia through the back of the wardrobe, I was introduced to a whole new nomenclature.

There aren’t a whole lot of studies focusing on asexuality, and I could only find one that addressed the question of how common it is. Out of a community-based sample of 18,000 participants, 1% identified as asexual – which doesn’t sound like much, until you crunch the numbers. One percent of 18,000 is 180. One percent of the U.S. population is over three million people. That’s a lot of people.

Other studies focus on who is likely to be asexual. Morag Yule and Lori Brotto, researchers at the University of British Columbia Sexual Health Lab, have conducted several studies investigating whether other characteristics are associated with asexuality. Interestingly, asexual men and women are more likely to be left-handed, according to one study. One of their studies focused on birth order – asexual men, according to their findings, are more likely than non-asexuals to be later-born siblings, while asexual women are more likely to be first-borns. People who are asexual are more likely, according to yet another study, to have alexithymia – an emotional blindness, detached from any experience of feelings. Not surprisingly, Laura Gilmour, a researcher from Grant MacEawan University in Ontario, found a higher-than-average rate of asexuality among people with autism spectrum disorders – which often involve some form of alexithymia. The asexual community seems to have made this connection on its own – one blogger calls himself  “Amoebageek.” (“Amoeba” is a slang term used to describe asexuality.) Another calls herself “LadyGeekGirl” and posts semi-regularly about asexuality. Like so many things in the queer community, I bet if an asexual-identified person read these studies, that person would say, “Well, I could have told you THAT!”

All of that came from about five different studies. No joke. In fact, the best information out there about asexuality isn’t emerging from the psychological literature – at least, not yet. The Asexual Visibility and Education Network (AVEN), on the other hand, provides an overview of asexuality, a series of FAQs, stories of the experiences of various asexual-identified people, a newsletter, and an online forum.  In fact, some people identify as “AVENites” or “AVENistas,” meaning that they are a member of the AVEN forums. It’s clear that AVEN is a strong fixture in the asexual community, and it’s chock-full of great information.

As I was reading through AVEN’s site for the first time, what intrigued me was their strong, repeated focus on research ethics. Emphasis on the word STRONG. Their “Rules for using AVEN for research,” for example, provides researchers with an extensive set of guidelines for recruiting participants or using existing data from AVEN. This is as rigorous as a university Human Subjects Committee, I thought to myself as I read through these documents. In addition to their lengthy guidelines, AVEN also asks researchers to read their “Open Letter to Researchers,” a document drafted in 2011 that provides further recommendations for conducting research using online asexual communities. 

Why so much focus on research ethics? Remember what I said earlier – that “the best information out there about asexuality isn’t emerging from the psychological literature.” Part of that is because asexuality is just starting to register on the radar screen. But part of it is that asexuality has already been extensively studied – but in an abusive and pathologizing way. You see, most researchers have assumed that asexuality is a psychological disorder. They get diagnosed with “HSDD” – hypoactive sexual desire disorder (or, since the publication of DSM-5, “SIAD” – sexual interest/arousal disorder). And then they get treated for it – well, subjected to reparative therapy, really. Sound familiar?

Think about it. Lesbian, gay, and bisexual people continue to be subjected to reparative therapy, even 41 years after the “homosexuality” diagnosis was removed from the DSM. Transgender people often are expected (or forced) to undergo some form of gender-reparative therapy, often after being diagnosed with “gender identity disorder” (or, since DSM-V, “gender dysphoria”). And here it is again. While there truly are people who suffer from sexual dysfunctions and deserve to experience relief from them, AVEN – and a growing group of researchers – makes clear that asexuality is not the same thing as HSDD or SIAD. It’s a sexual orientation. And attempts at changing people’s sexual orientation via reparative therapy techniques – well, you all know how that goes.

At the conference, the question about asexuality wasn’t the only one that got the gears of my brain turning. Shortly afterwards, another student approached me and asked, “What do you think about labels?” (Actually, before asking the question, he prefaced with a series of comments about queer theory, post-structuralism, and radical deconstructionism. I won’t go into all of that here.)

What do I think about labels? I had to think for a minute. Years ago, feminist psychologist Laura Brown wrote a book called Subversive Dialogues: Theory in Feminist Therapy, which influenced my thinking enormously. One chapter in the book was titled “Naming the Pain,” and it focused on the politics of diagnosis – a form of labeling, if you will. The Cliffs Notes version of that chapter is that diagnosis, as we all know, can be incredibly pathologizing and shaming. But it can also be liberating. Knowing what it is that you have enables you to talk about it, to find community, to experience some sense of relief.

The same goes, I think, for sexual and gender identity labels. Finding a word to describe your experience can be enormously empowering. Once you find the word “asexual,” you’re more likely to stumble upon AVEN – and find a large community of others like yourself. But labels can be hijacked by others (or they can create their own labels), and used to suppress and control. Sexual and gender minorities are all too familiar with this, I must say.

One conference. A semester’s worth of new information. Try it sometime.

Diagnosis, disorder, dysphoria? The GID debate

The Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is slated for publication in May of 2013. This much-anticipated event has been surrounded by heated controversy since its early planning stages more than a decade ago. One of the more scathing critiques of the DSM revisions comes from Dr. Allen Frances, former chair of the psychiatry department at Duke University School of Medicine – and former chair of the DSM-IV task force. “DSM-V promises to be a disaster,” he recently wrote in a New York Times op-ed piece. And transpeople and trans activist groups are among those who believe that the DSM changes will indeed be disastrous.

For those of you who are unfamiliar with the current and proposed DSM categories, I’ll give a brief overview. Currently, the DSM includes two diagnoses that could potentially apply to transpeople, one of which I’ll talk about in this post. (I’ll address the other one at a later date.)  Gender Identity Disorder (GID) is used to describe people who feel a discontent with the sex they were assigned at birth and the gender roles associated with that sex. In children, this can involve “strong and persistent preferences for cross-sex roles in make-believe play or persistent fantasies of being the other sex,” or it can involve an “intense desire to participate in the stereotypical games and pastimes of the other sex.” In other words, a GID diagnosis could be applied to young boys who want to play with dolls and get their toenails painted, and to young girls who want to run around and play with trucks. The most common form of treatment for children diagnosed with GID is gender-reparative therapy – getting them to conform to societally prescribed gendered behaviors.

In adults, GID involves a “preoccupation with getting rid of primary and secondary sex characteristics (e.g., request for hormones, surgery, or other procedures to physically alter sexual characteristics to simulate the other sex) or belief that he or she was born the wrong sex.” Because medical intervention is typically part of the gender transition process, transpeople seeking hormones or surgery have, until recently, needed to get permission from a team of gatekeepers before moving forward. And the first step in one’s gender transition involved being labeled with a psychiatric diagnosis.

Sometimes receiving a diagnosis is comforting, validating, and ultimately helpful. Anyone who’s experienced a mysterious and disturbing collection of symptoms will likely feel a sense of relief once a doctor says, “Oh, you have ________ – and this is what we can do to help you.” When a diagnostic label is applied, it means (1) you’re not the only one that’s experienced this (which can be comforting), and (2) knowing what you have likely gives the doctor an idea about what to do about it (assuming something needs to be done about it).

Unfortunately, being labeled with a psychiatric disorder is, for many people, deeply pathologizing and potentially harmful. For example, a recent wire news article describes the case of a transwoman who was at risk of losing custody of the children she fathered before her transition, because she is diagnosed with a “serious, chronic mental illness.” For many people, receiving a diagnostic label carries an intense level of social stigma. David Rosenhan’s classic article titled, “On Being Sane in Insane Places” documented the results of his study of eight healthy individuals (including himself) who faked a mental illness, got themselves admitted to a psychatric hospital, and behaved normally in an attempt to see whether or not the staff would catch on to the ruse. One of the most powerful findings that emerged from that study was the concept of the “stickiness of the diagnostic label.” If a person receives a diagnosis, it sticks to them forever – and that label clouds the lens through which others perceive them. A person is no longer an individual with dignity – they’re a schizophrenic, or they’re bipolar, or they’re ADHD, and they’re treated like a leper. Being diagnosed with GID, trans activist groups say, strips the individual of dignity and creates yet another target of oppression.

Trans activist groups find themselves between a rock and a hard place. On the one hand, many would like to see the GID diagnosis eliminated altogether, just as homosexuality was depathologized in 1973. Along those lines, last year the World Professional Association for Transgender Health (WPATH), which has developed the Standards of Care for the Health fo Transsexual, Transgender, and Gender Nonconforming People, took a depathologizing stance by eliminating the requirement that a transperson undergo psychotherapy – and receive a psychiatric diagnosis – before undergoing gender transition. However, some are concerned that, because insurance companies require a diagnosis before authorizing reimbursement, eliminating the GID diagnosis altogether will result in people having to pay out of pocket.

Instead of eliminating the GID diagnosis, the DSM-V working groups are proposing a name change and a distinction between children and adults. The two newly proposed categories are “Gender Dysphoria in Children” and “Gender Dysphoria in Adolescents or Adults.” The criteria for these diagnoses remain similar to the verbiage in DSM-IV. What’s interesting is that, in both diagnostic categories, two subtypes are being proposed: “with a disorder of sex development” and “without a disorder of sex development.” A disorder of sex development (DSD), essentially, is an intersex condition – a term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. So now intersex people are at risk for being labeled with a psychiatric diagnosis, whereas DSM-IV excludes people with intersex conditions from consideration for the diagnosis. Essentially, we’ve ended up with more diagnostic categories, instead of fewer. From my vantage point, that looks like a step backward, rather than a progressive move forward.

So much has been written about ethics, empowerment, and psychiatric diagnosis – particularly from the feminist community – and I wish the DSM-V Task Force would pay attention to it. Laura Brown’s book Subversive Dialogues: Theories in Feminist Therapy contains a chapter titled, “Diagnosis and Distress,” which I think should be required reading for anyone involved in the enterprise of psychiatric diagnosis. From her perspective, diagnoses in and of themselves aren’t inherently bad – but the motivations behind them and the ways they are used can be incredibly harmful. There’s a vast difference between using diagnoses as a tool of conformity and a form of control, and using diagnoses to empower people and improve their quality of life.