Bad Stat of the Month: HIV infection

AIDS is a horrible disease. My family has lost at least one dear friend to it, and the world has lost millions of loving, creative people. It also affects a significant number of transgender people around the world. AIDS needs to stop, and I’m heartened by recent news of medical advances that help people to live full lives with HIV infections, and even suggest the possibility of a cure.

hiv-odds-ratio1

In order to stop the spread of AIDS and help save the lives of people infected with HIV, we need to know what’s going on. We need the best information possible, and we need to avoid overreaching and making unjustified assumptions. That’s why I’m frustrated by April’s Bad Stat of the Month: Worldwide burden of HIV in transgender women by Stefan Baral, Tonia Poteat, Susanne Strömdahl, Andrea Wirtz, Thomas Guadamuz and Chris Beyrer at Johns Hopkins, the Karolinksa Institutet and the University of Pittsburgh.

As I said with the inaugural Bad Stat of the Month, I’m not happy to be doing this. I’m sure that Baral and his associates are all caring professionals who really want to make a difference in the fight against AIDS. I believe that they also want to help transgender people, and they think they’re doing that by spreading these figures. I hope that this post will convince them that this strategy does more harm than good, and that they should concentrate their efforts elsewhere.

So here’s the headline that came blazing across my feed reader earlier this month: Transgender Women 49 Times More Likely To Have HIV, Study Says. “It doesn’t seem like it’s been a priority for global funding entities to care about the needs of transgender communities,” Baral told the Huffington Post’s Meredith Bennett-Smith. Bennett-Smith continues, “Going forward, Baral said he hopes health care providers and advocates will improve the way they target transgender populations and tailor treatment systems and support networks.”

Fair enough. I want global funding entities to improve the way they target transgender populations, because much as I want them to care about my needs, as a middle-class HIV-negative white American I don’t need their funding. What I’m afraid of is that the research of Baral and his associates will obscure that fact and other important patterns in the data, making it more difficult for them to target populations, exactly the opposite of their intentions.

How does this study obscure these patterns in the data? There are multiple ways, and I could probably write a post a day for a month. Tonight I’m going to focus on one specific weakness in the methdology, that I’ve discussed many times before. Baral and his colleagues pooled data from 39 studies across fifteen countries. I’ve looked at a few of these studies, and they all use non-representative samples. It is well known that a non-representative sample cannot be reliably generalized to the population at large, and many of these studies warn against such overgeneralizations. Baral and his co-authors simply ignored these warnings, stating in their summary, “Our findings suggest that transgender women are a very high burden population for HIV and are in urgent need of prevention, treatment, and care services.”

For example, one of the studies that Baral et al. used was a study by Kristen Clements-Nolle, Rani Marx, Robert Guzman and Mitchell Katz of the San Francisco Department of Public Health, who write, “The primary limitation of our research was the use of non-probability sampling. Our findings may not generalize to other urban areas, and there may be threats to internal validity if certain sampling methods were more likely to recruit high-risk individuals. Most traditional random sampling approaches would not produce reliable samples, however, because the transgender population has strong privacy concerns and has never been counted, and because many transgender persons are marginally housed or homeless.”

Despite this warning, Baral et al. went right ahead and generalized Clements-Nolle et al’s results, not only to other urban areas, but to the entire United States, and with a certain weighting, to the world.

As I said, there are more problems with the meta-study, but I’ll have to save those for later posts. I’ll also talk about the implications of these problems for trans people and people at risk for HIV.

Three definitions of transgender

You may think you know what “transgender” means. But if you’ve been around the trans community for any length of time, you know that the word has been fought over before. There are at least three different ways that the word is used, and all apply to a somewhat different group of people.

First let’s take a look at one of the most widely circulated definitions, found in the GLAAD Media Reference Guide:

Transgender is an umbrella term for people whose gender identity and/or gender expression differs from the sex they were assigned at birth. The term may include, but is not limited to transsexuals, cross-dressers and other gender non-conforming people.

This is the famous “transgender umbrella” that we see in promotional materials and statistics. Note the “gender identity and/or expression” part – that’s the inclusive, welcoming part.

Now there’s another definition of “transgender” that conflicts with it. The funny thing is that it’s on the exact same page of GLAAD’s media guide, in the definition of “gender identity”:

Gender identity is one’s internal, personal sense of their gender. For transgender people, their birth-assigned gender and their own internal sense of gender identity are not the same.

In this definition, note that for transgender people – all of them – the assigned gender and gender identity are not the same. Those are the exclusionary, rejecting parts.

These two definitions contradict each other. The first one includes people whose gender identity doesn’t differ from our assigned gender, while the second one does not. They don’t both belong in the same organization, let alone on the same page.

There’s a third one, which was noted by Lal Zimman in his 2009 paper (PDF, page 58):

my use of the term transgender is not intended in the ‘umbrella label’ sense often found in literature dealing with issues of gender and sexuality. Nor is it intended as a pancultural descriptor to be applied to any gender variant community. Rather, my usage mirrors the meaning this term has taken on in many English-speaking transgender communities in the United States, in which it can serve as a demedicalized substitute for the term transsexual.

The GLAAD media guide notes that many people are substituting the term “transgender” for “transsexual,” and that not everyone is comfortable with that: “Unlike transgender, transsexual is not an umbrella term, as many transgender people do not identify as transsexual.” But then they give up on defining transsexual beyond that. Zimman provides a definition: “those individuals whose sense of themselves as men or women runs contrary to the gender they were assigned at birth, and who have therefore decided to make a social transition from one gender role to another (regardless of what medical interventions, if any, are pursued).”

I want to modify Zimman’s definition here, because he is mixing something that is observable (a gender role transition) with something that is not observable (a gender identity mismatch). His “therefore,” although it is widely claimed by many, is also unjustified. There are a significant number of people who transition to a new gender and report having no clear feeling of a gender identity mismatch (or even a gender identity at all) before transition; Zinnia Jones is probably the best known: “For most of my childhood, I didn’t feel like I had a meaningful identity of any kind, gender or otherwise.”

This leaves us with three definitions of “transgender”: the umbrella, the gender identity mismatch, and the transitioner.

tg definitions1

There is a lot more overlap among these definitions than the diagram would suggest, but it remains true that there are people who fit under the umbrella who do not transition or have a gender identity mismatch. There are people who have a gender identity mismatch and fit under the umbrella who do not transition. And there are people who transition but do not have a gender identity mismatch or fit under the umbrella.

This is important to me as someone who fits under the umbrella but is not planning to transition. I hope that GLAAD will revise its Media Reference Guide to be more consistent with its stated goals of inclusion.

Good research of the month: “coming out” in trans communities

As you could probably tell, I feel bad describing research like the Trans Mental Health Study in such strong negative terms. I know that the authors wanted to do something to help the trans community, and they thought that was what they were doing. I want to balance that out by highlighting examples of transgender research done right.

I recently had the pleasure of meeting Lal Zimman, a fellow linguist who studies transgender language. In 2009, Zimman published a paper (PDF) summarizing his research into the concept of “coming out” in transgender communities.

A.C. Liang (1997) and Kathleen Wood (1997) reported on “coming out” stories of gay men and lesbians. In these stories, the term “coming out” is used to refer to the sharing of a sexual orientation. Because this orientation may not be visible, Zimman says, “Liang argues that reference to the ‘processual’ nature of coming out – in other words, the fact that coming out is not a single event but is rather reenacted time and again throughout an individual’s lifetime – is a crucial component of the coming out narrative.”

Zimman interviewed nine individuals who had completed a gender transition and found a pattern that will probably be familiar to a lot of you. They used “coming out” to share a transgender identity, but in one of two specific ways that were very different from those reported for gay men and lesbians. Those who hadn’t transitioned to their target gender used “coming out” to mean a declaration (in Zimman’s terms) of their desire or plans to transition to a different gender. Those who had transitioned used “coming out” to mean a disclosure of their history of gender transition.

This is the right way to do research on an unrepresentative sample. Ask relatively open-ended questions and listen to the answers. Note common threads among the answers. Use the stories to make existential arguments – ones that highlight the existence of something that may not have been acknowledged by the academic community. This is particularly valuable to show exceptions to generalizations that others have made. In this case, Zimman identifies exceptions to the generalizations that Liang and Wood made about coming out narratives.

Even though I think Zimman’s research is exemplary here, I want to note that I have a verbal hygiene argument with what he found. I don’t like these uses of the term “coming out,” and I think they’re bad for both the trans community and the wider LGBT community. But that’s a topic for another post. In the meantime, keep studying trans communities!