Blacklisted!

I’ve been writing this blog since 2006, and for a while it seemed that my readership was growing steadily. I joined Twitter in 2009, and Tumblr in 2013, and later that year I made a separate Twitter account for personal and political tweets. I saw people retweeting and reblogging my work. But at a certain point the number of retweets, reblogs, mentions and comments that my posts got abruptly dropped. Since then most of the responses I get are from regular readers or Facebook friends.

This is not entirely a bad thing. I know that a lot of what I write is controversial, and some transitioners even find it offensive. I’ve had a couple of unpleasant experiences, on Reddit and on Facebook, with people sharing my work with a hostile audience, and it is not necessarily valuable. I don’t really want to reach people who have closed their minds to my ideas, whose only response will be unthinking hate, and who will use the opportunity to find ways to dismiss my arguments.

The main reason I write is simply because I have ideas, thoughts, words in me that want to get out. I read things that other people write, and if I don’t write down my own thoughts in response, I tend to get more confused about the issues and forget my earlier thoughts.

But I also write for others, for trans people who are deciding whether to transition, for trans people who have decided not to transition and can hopefully benefit from my experience, and from various kinds of allies. I want to continue to reach them.

What’s frustrating is that it could be due to people simply not appreciating my writing anymore. I find myself wondering whether I’ve gotten so out of touch with other trans people that nobody agrees with me at all. Or possibly worse, that what I say is complete gibberish to them.

I’ve occasionally read things about a Twitter blacklist, a plugin that will load a centrally maintained list of Bad People and filter their tweets out. Now, I believe in blocking people; there are too many trolls out there. But blocking should always be done on a case by case basis. Group blacklists are a huge abuse of power.

It crossed my mind that I might have been put on some blacklist. This is a good place to point out that I have not done any of the things that are normally invoked to justify keeping a blacklist. I have never harassed or stalked anyone. I have never threatened anyone with discrimination, much less violence. I haven’t called anyone slurs based on race, gender, religion, sexuality or anything else. The worst things I’ve said to anybody are probably “fuck you” and “you’re an asshole” in the midst of heated arguments. If that’s what it takes to be on that blacklist I’d expect half the world to be on there.

I got some confirmation for my suspicions last year, when the LaLa Zannell, a staffer at the Antiviolence Project retweeted the claim that “Stonewall was started by trans women.” The claim bothers me because it is invariably used to foreground transition track trans women, excluding the trans women at Stonewall who chose not to transition. The word “trans women” didn’t exist then; they all called themselves queens or transvestites, regardless of their transition status.

I tried to engage with the people repeating that claim on Twitter, and at first I was engaged, if with suspicious contempt. But then all of a sudden LaLa Zanell retweeted a tweet from an anonymous account, responding to another, private anonymous account, claiming that I had “priors,” so that it was okay to block me.

Again, note that I did not attack or threaten anyone or any group. Zannell and friends were challenging a historical account of Stonewall, and offering an alternative. I was doing exactly the same thing.

That was clear evidence of my name on some blacklist that could be used by people to decide whether to block me. I suspected I was also on an informal blacklist, but I had no evidence until a few months ago I came across a tweet shared by a fellow linguist and trans woman who follows me on Twitter. The author of this post, also a trans woman, talked about using these group blacklists in the past and renouncing the practice:

I saw this tweet from my professional Twitter feed, where I mostly talk about linguistics and try to keep political tweets to a minimum. I logged in to my personal account and discovered that I was indeed blocked by the author of that blog post. I tweeted this information to her from my professional account, and she happily removed the block. Neither of us remembered having any interaction with the other, so it is clear that I am indeed on an automatic blacklist.

What is most disturbing about these blacklists is that there is no due process, no opportunity for redress, and not even any notification to people who are placed on one. Even the people who use these blacklists are never told anything about me. One day I am visible to them, the next I am gone.

Even the informal blacklist that Zannell and friends used was a complete mystery to me. The tweet she retweeted came from an anonymous account that blocked me. The evidence of “priors” it referred to was from another anonymous account whose tweets were private. There was no way for me to see the evidence against me, and no opportunity to respond or refute it.

It is perfectly fine for individuals to block anyone they don’t want to interact with. It is also appropriate for Twitter or even organized groups to block or ban repeat offenders, with due process, transparency and accountability.

It is much worse to have hidden blacklists maintained by anonymous administrators, with no procedures for recourse or accountability. And it is even worse to have such hidden blacklists applied automatically, with the user being unaware of the people they have blocked. It is a recipe for disappearing people that a totalitarian dictator would be proud of.

What I find most disturbing is that LaLa Zanell worked for the Antiviolence Project at the time. Zannell may have been junior staff member at the time, but when I alerted the organization about this activity there was no response. This lack of interest, and the fact that Zannell has been promoted twice since then leads me to wonder whether AVP as an organization would ever adopt a blacklist.

Would there come a time when I could be beaten up, and try to contact AVP to report it, only to be ignored? I hope not. I’d like to get some reassurance from them.

I wrote most of this post a few weeks ago, but I’ve been avoiding finishing it until tonight, because it was painful just re-reading the nasty tweets from Zannell and her anonymous friends, and even more painful being reminded that there are thousands of people out there who won’t even get a chance to read a little of what I write, so they can decided for themselves whether to read more or not.

What moved me to finish the post and click “Publish” was the recent controversy over fake news in the US election. I’ve had a lot of thoughts about the election and about the fake news, but I haven’t posted anything because I haven’t had any answers. Tonight another fellow linguist and data scientist posted a dataset of “fake news” gathered from websites flagged by Daniel Sieradski’s “BS Detector” software, which relies on a list of domains that “was somewhat indiscriminately compiled from various sources around the web.”

At this point I don’t think I need to spell out for you why I think Sieradski’s methods are a bad idea. Yes, I understand why group blacklists are tempting. But they don’t work, and they are open to serious abuse. I’ve spent my life supporting independent media organizations, going back to when I used data science to fight Rush Limbaugh’s misinformation in 1995. I don’t want to see small media providers snuffed out because “this blacklist is better than nothing.” It’s not. I’m serious.

Bad stats, advocacy and HIV in trans communities

In April I posted about a study by Stefan Baral and his colleagues at Johns Hopkins that purported to show that “Transgender Women 49 Times More Likely to Have HIV.” Baral acknowledged in a comment (I have no reason to doubt that it’s really him) that “these are pretty bad stats!” but went on to say that he felt his publication would help trans communities in the long run, and pasted the limitations section that he had ignored in his statements to the Huffington Post.

Claudia says that the police in Jackson Heights are much more respectful than in Hunts Point, focusing on keeping the overall area safe. “The men get rowdy, get drunk, and behave awfully. I don’t care if these women are men, nobody has a right to treat them like garbage.” See more photos by Chris Arnade, and read some of the sex workers' own stories.
Claudia says that the police in Jackson Heights are much more respectful than in Hunts Point, focusing on keeping the overall area safe. “The men get rowdy, get drunk, and behave awfully. I don’t care if these women are men, nobody has a right to treat them like garbage.” See more photos by Chris Arnade in his Flickr set, and read some of the sex workers’ own stories.

In theory I agree that it’s worth disseminating potentially inaccurate information if you believe that it’s going to help people regardless. In practice it’s never easy to predict what effect your actions will have. In this particular case, I think that reports like these do more harm than good for a very specific reason: they obscure important differences.

Baral’s study was actually a “meta-study” that combined studies done in cities all over the world. All of these studies investigated non-random samples of transgender people, usually focusing on subgroups that are at particular risk for violence or disease. They all include disclaimers saying “NON-REPRESENTATIVE SAMPLE NO NO DO NOT GENERALIZE RESULTS!!!”

One of the source studies turned out to be the study that I participated in here in New York, led by Larry Nuttbrock of the National Development and Research Institutes (NDRI). In November I criticized the study for overgeneralizing, but as I mentioned in May, the study does reveal some important things, which may very well be found in other communities.

In particular, the NDRI study reveals the deep divide here in New York between the lives of middle-class white trans people and lower-class black and Hispanic trans people. The difference in HIV infection rates (3.5% vs. 48-50%) between the two groups of participants in the study is huge. In another paper, the NDRI researchers indicate that HIV infection tends to correlate with unprotected anal sex, which in turn tends to correlate with gender abuse and symptoms of depression, as well as with attraction to men and nonwhite ethnicity.

What that means, in turn, is that middle-class white trans people like me are not at significant risk for HIV infection, or gender abuse, or depression. To use a fancy social science term, it’s intersectional: if you’re black or Latina, if you’re feminine, if you’re attracted to men, if you’re poor, if you’re a prostitute, it all adds to your risk. And as Hwahng and Nuttbrock observed, it’s all about power: the power to say no to unprotected anal sex.

That’s why you won’t see me using this study to get anything for myself. These high HIV rates don’t apply to me. I don’t deserve any of the money that governments and donors want to spend on it. I don’t know which donors Baral is trying to convince, or what he wants them to spend the money on, but it shouldn’t be middle-class white people.

This is not a problem of “trans women” or even of transgender people in general. It is a problem of disempowered black and Latina transvestites, and it can only be solved by re-empowering them. As Erica so eloquently put it, nihil de nobis sine nobis.

Of course I’m concerned about these high HIV rates, because I care about my fellow transvestites, and my neighbors. That’s why I’m prepared to act in support and solidarity, and I hope you are too. But don’t talk to mainstream transgender organizations that aren’t doing anything about this issue. Talk to organizations that empower sex workers of all genders, like the Red Umbrella Project.

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.

Bad stat of the month: Trans regret

I don’t want to do this. I want to be a happy trans. I don’t like being negative, and I don’t like singling out people. I’ve held back for years. Unfortunately, people keep putting in hours, months, years of work producing these bad statistics, and then advocating questionable policies based on them. This latest one could be really damaging. It’s about trans regret, and it comes from a British grad student named Maeve Regan:

The recent Trans Mental Health Study was the largest study of its kind ever undertaken in Europe, with almost 900 respondents. The study asked specifically about individuals’ feelings of regret following social and/or medical transition. These are the results:

In terms of social changes made during transition (coming out to friends and family, changing name, living full or part time in a gender not assigned at birth), 34% of respondents had minimal regrets and 9% had significant regrets. A small majority, 53% had no regrets.

Specific regrets given included: not having the body they had wanted from birth, not transitioning earlier, losing friends and family, and the impact of transition on others.

In terms of physical changes made during transition (resulting from hormone therapy and surgical interventions), the vast majority, 86%, had no regrets. Of the remainder, 10% had minor regrets and 2% had major regrets.

The specific regrets given include complications relating to surgery (especially loss of sensitivity), and the choice of surgeon (if surgery resulted in complications or required revisions and repairs).

Regan, who identifies herself as “cisgendered (not trans),” wrote the above as part of a summary of findings of the Trans Mental Health Study, for which she was “part of the Advisory Board.” [Edited to add]: She concludes, “It is clear from the actual reported regrets, along with the conclusions that transition is associated with a broad range of positive indicators, that most cases of regret around transition are not related to being a different gender to the one assigned at birth, or undergoing transition, but rather due to poor surgical outcomes, social stigma and huge barriers to medical care.”

In other words, trans people never regret transitioning. We only regret the way we’re treated, or the way the surgery turns out.

This statistic was used in an online discussion where I brought up trans regret. [Edited]: One of Regan’s co-authors, Jay McNeil, wrote, “we found that where people did have regrets, they were largely related to their experiences of how they were treated rather than the choices they’d made around their bodies. Where people felt like de-transitioning it was mainly because they lacked support to cope wit the social stigma and losses.”

How are these percentages bad statistics? They are taken from a non-representative sample and generalized to all transgender people in the United Kingdom. Specifically, this survey was collected using the ubiquitous “snowball” method:

Participants were encouraged to take part mainly through a process of snowballing. Trans support groups, online forums and mailing lists with UK members were contacted and given information about the study and asked to share the survey as widely as possible. Other equality and health groups, and professional networks with potential links to the trans population (e.g. LGBT networks; professionals whose work might bring them into contact with trans people) were also contacted and asked to distribute information about the survey. The survey spread primarily through word-of-mouth, and the researchers attended a number of trans groups in person to discuss the project and encourage participation. The survey was open for approximately 3 months (mid-April 2012 to mid-July 2012), during which time reminders were posted online, and the survey continued to be publicised.

The problem is that “trans people” are typically defined by whether they intend to transition. Regretters by definition withdraw that intent to transition, and are thus considered by many to be “not really trans.” Some regretters, like non-transitioners, accept that classification and affirm, “I guess I wasn’t trans after all.” Others may still consider themselves trans, but not want to hang around with the happy transitioning crowd. Would you?

Regretters who don’t believe they’re trans wouldn’t take a “trans mental health survey.” Regretters who are alienated from “the trans community” might not know about such a survey, and might not want to fill one out if they did know about it. So this survey is highly unlikely to have received responses from any serious regretters. That’s not evidence that regretters don’t exist, it’s evidence of bad sampling.

These numbers could be really damaging because they give a false impression that regret doesn’t exist. That could set up any number of trans people for serious disappointment down the road. Of course, with this “no true Scotsman” (ahem) reasoning, the authors may never find out.

As I said, this snowball method is all over the place. I don’t want to single out the authors of this study for doing what practically every other trans researcher is doing. I felt bad for focusing on Emilia Dunham for publishing a bunch of unfounded generalizations back in 2011. But you need to start somewhere. And the conclusions that Regan draws are bad, bad, bad.

I get the feeling that Regan and the other authors of the Trans Mental Health study are kind, caring people, and want to help all trans people. I think if they looked into the eyes of a regretter and saw the disappointment and frustration that I’ve seen, they would care about them too, and stop this denial. I wonder if they will ever allow themselves to do it.

The curious incident of the trans feelings

There’s an ugly bit of misinformation going around the Internet, that feelings of gender discomfort always get worse with age.  I discovered it the other day in the comments to a New York Tines “Ethicist”column responding to an older trans person.  The first comment was by a post-transition woman named Zoe Brain: “Gender Dysphoria varies in intensity, and is also progressive.”

It was echoed by another woman, Julie C. from Bala Cynwyd: “Trans is progressive, getting worse as the trans person gets older.”

The other night Natalie Reed tweeted this to me:

Because it WILL keep coming back. And it WILL get harder.

(Update: Natalie Reed was very angry when I tweeted her this post. She said that it’s basic Internet etiquette to ask before using someone’s tweets in a blog post, and that I damaged her ability to trust other trans people who reach out to her for help. Apparently she was under the impression I was asking for advice, not support. I honestly had no idea that some people followed this rule, and no intention of misleading her or abusing her trust.

As soon as Reed complained to me I apologized and removed the references to her from this post. She ignored that and spent an hour subtweeting her misunderstandings about my intentions. After several months with no response, I am restoring the references to her statements.)

The gist of this argument is that even if you’re not one of the “transition or die” trans people, if you don’t transition now you’ll eventually find yourself in that category.  There’s also an idea (which I generally agree with) that if you’re going to transition the earlier the better.  Put the two together, and you get an argument that every trans person should transition as soon as possible.

(I’m still not sure how you get from there to “anyone who doesn’t want to transition must not be trans,” but we can deal with that at some other point.)

For some people, feelings of gender discomfort and the desire to be the other gender definitely do get stronger over time.  I’ve heard this from many trans people, and I don’t want to discount their experiences.  But it’s not necessarily true, and it’s not automatically true.

Again we come back to the principle that no one really knows what’s going on with trans people, and no one will know until we get some kind of representative sample.  Generalizations with “all” and “always” are simply not appropriate.

I personally find that my discomfort with being a man, and my desire to be a woman, are not even perfectly correlated with each other, much less constant over time.  They both have their ups and downs, and I can connect some of those ups and downs to particular circumstances in my life, but not all of them.  Reed is right in that they both keep coming back, even after thirty years or so, but she’s wrong in that on average they haven’t gotten more intense or more frequent.

This is again the problem of negative evidence: we can see that for some trans people it gets harder over time, but we don’t necessarily notice that for other people it doesn’t get harder.  For every person who transitions or commits suicide, or even hangs on in quiet desperation, there may be one, or many, who lead relatively happy lives without transitioning, until they die.  We just don’t know.

What we do know is that there are some people like me, for whom it hasn’t gotten harder.  And that’s the thing about generalizations: they can be invalidated by even one counterexample.

My life as a data point

I came across this quote in the abstract of a conference presentation by Sel J. Hwahng (on Page 7 of this PDF):

It is well known among public health researchers that in the U.S. the majority of male-to-female transgender (transfeminine) people are low-income people of color, while the majority of female-to-male transgender people (specifically those that identify as transmen, FTM, or genderqueer) are white and economically/educationally privileged.

I was floored by this statement, since I’ve been very adamant about the fact that we just don’t know what the majority of anything trans is, and about the need for caution when making any kind of statement involving proportions. The statement goes against my own perceptions, but I deliberately avoid reading too much into my own perceptions, because I know how much I don’t know. If this non-fact is “well known among public health researchers,” then my opinion of public health researchers just dropped quite a bit.

I was further intrigued to discover that I’m in those numbers. Me personally, I’ve been counted! Several years ago I volunteered for a multi-year study of male to female transgender people in the greater New York area. Every few months I’d go in, answer a bunch of questions, and get a blood test and a few bucks for my trouble. I didn’t do it for the money, which was well below my hourly rate for computer work. I was contributing my data, in part to provide a counterpoint to the idea that all transfeminine people are low-income people of color. I guess it only goes so far.

It turns out that Sel Hwahng was one of the researchers. I might have talked to him once or twice, but I mostly dealt with Mona Rae Mason and Monica Macri. And yes, non-Hispanic white people counted for only 27% of study participants and people making more than $30,000 a year were only 26%, so us well-off white people are certainly a minority of the study participants. No, you can’t generalize from that, but then again I didn’t really talk sampling with anybody while I was there.

Reading that abstract got me looking up the results that have come out of the study. Sel Hwahng used some of the qualitative data in this report from 2007, showing how the MTF trans population in New York is segregated into distinct communities based on ethnicity: black/latin, asian and white. It’s got a lot of interesting existential observations, but I could do without the implication that all of us “middle-class White cross-dressers” are just waiting to break up with our wives to transition. Some of us plan to die as men.

In 2009 the whole group published a report using the quantitative data to argue that life for transgender people is more complicated than Ray Blanchard’s simplistic “homosexual” and “autogynephilic” dichotomy. They then got into a thing with Anne Lawrence about it. What I find most interesting is that among the study participants were 221 people who reported that at some time in our lives, wearing feminine attire was “sexually arousing,” including 90 who reported not being attracted to non-transgender females, and 58 who reported not being attracted to non-transgender males. One of those 58 is me.

In 2011 the group published another report based on questions about verbal and physical abuse, and whether such abuse was related to gender identity or presentation. They showed that MTF transpeople who experience that kind of abuse tend to be more depressed, and also to have more unprotected anal sex, and to be at greater risk for HIV infection. I’m glad to say that I didn’t have any abuse, depression or unprotected anal sex to report, and I didn’t test positive for HIV. I’m sad to read that there were 107 people who came in and told Monica or Mona that they’d been verbally or physically abused, 145 who were depressed, and 43 who had unprotected anal sex with a casual partner or a john. The point of the article is that one way to overcome AIDS is to stick up for transpeople, and of course that’s a message I support.

The 2007 report makes unsupported leaps even without explicit quantitative statements, but in the 2009 and 2011 reports, Larry Nuttbrock was very careful to include disclaimers about the limits to generalizing the results. I’m glad he did, and I think his conclusions were mostly justified. Overall, I’m satisfied with the reports that have come out of this study. It was an interesting experience to answer all those questions. I wonder what they’ll do next.

My comment on transgender data collection

Comment on Notice of Availability of Proposed Data Collection Standards for Race, Ethnicity, Primary Language, Sex, and Disability Status Required by Section 4302 of the Affordable Care Act (Document ID HHS-OMH-2011-0013-0001)

The deadline to submit your comment is Monday, August 1, 2011!

As a transgender person and a social scientist, I am excited to hear that HHS will be collecting information relating to transgender phenomena. These activities have the potential to bring us valuable information about the prevalence of transgender feelings, thoughts, beliefs and actions in the general population, beyond an often self-selected community that identifies as transgender and participates in the existing surveys. As a social scientist I have some longstanding concerns about the collection and presentation of survey data about transgender individuals, and I hope that your work will improve the situation. Here are some recommendations that I have, for the process of deciding what data to collect and how, and for the data collection itself.

In my experience, many organizations and agencies working with transgender communities repeatedly and consistently make generalizations about transgender populations that are unsupported by any data. For example, the Transgender Law Center found 194 transpeople through unrepresentative “convenience” techniques, of whom 114 reported annual incomes of less than $15,333. A cover article in the San Francisco Bay Guardian summarized it as, “In other words, more than half of local transgender people live in poverty” – an incorrect characterization that was not disputed by the study authors. As any introductory statistics textbook will tell you, prevalence in a convenience sample tells you nothing about prevalence in the general population. No one knows if the sample was representative of “local transgender people.” Presenting it as representative is misleading to the public and can lead to inappropriate funding allocations and badly targeted health initiatives, and possibly even a backlash against transgender people.

I believe that convenience samples can be very useful, for example to show the existence of job discrimination, poverty and prostitution in our community. There is a limit to their usefulness, however, and they are consistently used beyond that limit by social service providers and community advocates. The result is to spread unreliable information, and quite probably to waste taxpayer money and charitable contributions.

Reports like this are often accompanied by a disclaimer; the Bay Guardian article said, “TLC doesn’t claim the study is strictly scientific — all respondents were identified through trans organizations or outreach workers.” Unfortunately, they almost always go on to report the data as if the disclaimer were meaningless: the next sentence reads, “But the data give a fairly good picture of how hard it is for transgender people to find and keep decent jobs, even in the city that is supposed to be most accepting of them.” The reporting of percentages invites this kind of lip service to sampling procedure. Percentages are meaningless in these situations, but they are always reported, and the effect is to dismiss the disclaimer as a formality, encouraging media reporters to do the same.

On your website I see that you anticipate that the Williams Institute and the Fenway Institute will play a strong role in helping you formulate procedures for collecting information on transgender communities. I agree that they have done a lot of good work, and I support their inclusion in any round tables that you convene. However, both institutes have a history of presenting convenience samples as representative. I strongly recommend that you balance their participation with people who are knowledgeable about the appropriate use of sampling.

I am a strong advocate of qualitative research as a means of finding out problems that exist in the world. There are several advocates from the transgender community who have done quality ethnographic and autoethnographic work. One that I know personally is Gail Kramer, who has written the books My Husband Betty and She’s Not the Man I Married under the pseudonym Helen Boyd. I urge you to include in your Roundtables at least one qualitative researcher like Helen.

To my knowledge, only one researcher has done a representative sample of any segment of the transgender community. That is Niklas Långström of the Karolinska Institutet in Sweden. I strongly recommend that Långström, or someone familiar with his survey, be part of your Roundtables. I am also willing to participate, as a transgender person interested in these issues and as a social scientist who has used representative sampling in my professional work.

The curious incident of the healthy transwoman

I’ve noticed that transgender health researchers tend to focus on people with health problems, and that makes sense. Consequently, I’ve often felt a bit guilty talking about transgender health issues. I don’t have a sexually transmitted disease, the worst thing I’m addicted to is sugar, I’ve never been bashed, and I’m not depressed or suicidal. So why should I talk about my health? Why would any researcher want to study someone like me?

The answer comes from Sherlock Holmes, in the story “The Silver Blaze”:

Gregory ( Scotland Yard detective): “Is there any other point to which you
would wish to draw my attention?”
Holmes: “To the curious incident of the dog in the night-time .”
Gregory: “The dog did nothing in the night-time .”
Holmes: “That was the curious incident.”

There’s a fancy word for this: negative evidence. Often, the absence of a salient event can tell you more about the causes of a problem than a hundred events.

I see this all the time in my computer consulting business. If a customer is not getting an image on their computer monitor, it could be caused by a fault in the motherboard, the video card, the video cable, or the monitor. I can turn on the computer and get a blank screen a hundred times, but that doesn’t help me figure out which component is causing the problem.

If I can get a picture even once, however, I can isolate the problem. If I hook the computer up to a different monitor and the display comes on, I know that the monitor is the problem. If I put in a different video card, I know the customer needs a new video card.

This method can work with transgender health as well. We are a diverse group, and there may be something in family background or upbringing that can make the difference between health and sickness.

There are many choices that we make in our lives, and those choices may affect our health. We need to know the consequences of those choices. Even if that knowledge doesn’t ultimately change our decisions, it can prepare us and allow us to plan better.

That is why we need to hear about a whole range of transgender people, not just those that the researchers were able to track down.

The consequences of sampling bias

I wanted to go into a bit more detail about something I’ve mentioned before: that the use of non-representative samples can cause problems down the line. To illustrate this, I want to examine the claims of health disparities that Emilia Dunham lists in her Bay Windows article.

  1. Transgender people take more hormones and have have more surgeries than average.
  2. Transgender people smoke at a 30% prevalence rate, and use other substances to cope with the stress from discrimination.
  3. We’re more likely to suffer from depression and anxiety, and more likely to live with HIV.
  4. 61 – 64% of transgender people have been physically or sexually assaulted.
  5. 41% of transgender people have attempted suicide.
  6. All these percentages skyrocket for transgender people of color and low-income folks.
  7. A startling 1 in 5 transgender people have experienced complete refusal of services from healthcare providers.
  8. If transgender people aren’t referred to with correct names or pronouns or are treated with coldness, they may avoid the office.

Of these statements, only the last one is an existential statement. All the others are statements of prevalence or likelihood that are not generalizable without a representative sample. In my impression, some of them are more likely to be true of the entire transgender population than others. There are chains of causation from transgender actions to these disparities, and the chains are not all the same. Here are some possible causal chains. They are not the only possible ones, but they are the ones that seem likely to me.

First there are the inherent consequences of transgender actions: more hormones and surgery. If you’re only concerned with transpeople who choose to take hormones and undergo surgery, then of course this is true. But if you believe that not all transpeople choose hormones or surgery, and you don’t know how many do, then you have no way of knowing how great these disparities are.

Then there is harassment based on perceptible differences: physical and sexual assault. A lot of this has to do with passing – as one gender or another, not necessarily the one you prefer. The passing does not have to be total: a transperson can avoid a lot of harassment simply by avoiding being noticed. However, note that there is a feedback loop here regarding socioeconomic status: wealthier transpeople can afford higher quality hormones, surgery, hair removal or attachment, clothes, padding, cosmetics and training that can give them (us) a better chance of passing as the target gender.

There is also discrimination based on records or perceptible differences: refusal of healthcare service. There can also be housing, consumer and job discrimination, which can affect some of the factors below.

A transgender person has a number of potential reactions to the harassment or discrimination described above, including: avoidance of healthcare providers, depression, anxiety, substance abuse, suicide attempts. Out of fear of discovery, many transpeople engage in hidden sexual activities, where there is a greater risk of HIV infection.

Completing the vicious cycle I described above are the consequences of poverty, which may in turn result from discrimination: there is greater likelihood of harassment and discrimination (and the consequences that follow from that harassment and discrimination) and sex work (which increases the likelihood of HIV infection).

I know from personal experience, from friends’ anecdotes and from online reading that these disparities do not affect all transgender people. Some people do not choose hormones, some do not choose surgery. Some never take publicly visible transgender actions, and others pass well enough, so they are never harassed or discriminated against. Some are able to deal with the harassment or discrimination they experience without resorting to depression, anxiety or substance abuse, or attempting suicide (which is not a judgment against those who are unable). Some are able to avoid unprotected sex. Some are wealthy enough to avoid the consequences of poverty.

Here’s the problem with sampling: Dunham and other researchers have no way of knowing for sure whether they’ve oversampled from those who choose hormones and/or surgery; those who take publicly visible transgender actions; those who don’t pass enough of the time to avoid harassment or discrimination; those who already have tendencies towards depression, anxiety, substance abuse, suicide or casual sex, for unrelated reasons; and those who have lower incomes. After all, these are precisely the populations that public health researchers are more likely to come into contact with. Without representative samples, they can never prove that these disparities exist to the extent that they claim.

Now I want you to imagine that these researchers actually have been oversampling these higher-risk populations. On one level the consequences are minimal: if these are the populations with the greatest need, then it’s just another way to spend public health dollars on the people who need them the most. But on the image level and the credibility level, there are problems.

I’ve seen on the Web and on television that some people have a stereotype of “tranny” that combines all these factors: a drug-addicted, unpassable, mentally ill hooker with bad plastic surgery. Some people use that stereotype to justify harassment and discrimination against transgender people, and some family members fight against accepting their relative’s transgender feelings because they fear that this will be their fate. These kinds of unsupported survey results feed into those stereotypes.

What if at some point someone does succeed in doing a representative survey, and finds that the drug-addicted, cigarette-smoking sex workers are a small portion of the transgender population, and that the average transgender person is a drug- and disease-free, well-adjusted, successful computer technician making $60,000 a year? What if all the transgender health money was actually better spent on overlapping programs that would serve the needy population just as well? I think someone might feel cheated, and I think there might be a backlash.

There’s also the possibility that we might be missing out on some valuable information. What if we found that there were people who had the exact same background, and the exact same transgender feelings, but one group became drug-addicted HIV-positive hookers and the other became successful computer technicians? We could examine the populations and see what made the difference between health and sickness. It might not be the obvious solution.

This is why we need representative sampling, and this is why you need to comment on the proposal and tell that to Secretary Sebelius.

A critical opportunity in transgender research

The Department of Health and Human Services has just made a big announcement: they will begin collecting data on LGBT issues, including transgender issues. The goal is to document disparities in health care, as well as plain old disparities in health, so that they can be addressed in the future. The plan is to have two roundtables on “gender identity data collection” with “key experts” this summer and fall, and then the “Data Council” will present a strategy next spring.  The department will also collect public comment in various ways, one being through a website called regulations.gov, which is currently down.

If done right, this could be a tremendous help to understanding transgender issues.  “The first step is to make sure we are asking the right questions,” HHS Secretary Kathleen Sebelius told the Washington Post. “Sound data collection takes careful planning to ensure that accurate and actionable data is being recorded.”  As I’ve written before, current research on transgender feelings and actions is severely hampered by the lack of any kind of representative sample.  Just to give you a quick sense, here are ten very basic questions that nobody knows the answer to:

  • How many transgender people are there?
  • How common are the various transgender thoughts, feelings and beliefs?
  • How common are transgender actions like cross-dressing, body modifications, and “soft mods” like shaving?
  • How common are transgender name and pronoun changes?
  • How common are part-time cross-living and full time transition?
  • How often are sexual activities part of transgender activities?
  • How common are diseases and destructive habits among transgender populations?
  • How many transgender people are in long-term relationships?
  • How often are various subgroups targeted by violence and discrimination?
  • How satisfied are transsexuals twenty, thirty or forty years post-transition?

Unfortunately, transgender research is dominated by two camps, the pathologists who make unfounded generalizations based on case studies of their own patients, and the social service providers who make unfounded generalizations based on service recipients, Internet surveys and word of mouth.  Neither of them seem to have understood the idea that while convenience samples can provide the basis for many useful existential statements, prevalence statements based on unrepresentative samples are worthless.

At this point it looks like the roundtables will be heavily influenced by social service providers who only pay lip service to the limitations of their research.  The Plan says, “While HHS is in the beginning stages of developing data collection on gender identity, many researchers (e.g., Williams Institute at the University of California Los Angeles and the Center for Population Research in LGBT Health at the Fenway Institute) have been working on such data collection for several years.”  The Williams Institute produces reports like “Bias in the Workplace” (PDF), an important summary of numerous studies investigating workplace discrimination that repeatedly acknowledges that the studies are based on convenience samples – and then goes ahead and repeats percentage results as though they meant something.

The Fenway Institute employs transgender health advocate Emilia Dunham as a Program Associate, and she also hosted a webinar on the issue.  It seems quite likely that she will be one of the experts at the roundtables.  But in an otherwise solid article for Bay Windows presenting these changes at Health and Human Services, Dunham uncritically repeated several of these unsupported percentages.

There is a very short list of Experts who I think should be on these Roundtables.  The strongest research into transgender issues has been qualitative research: listening, reading and introspection, finding existential statements but not making unsupported claims of prevalence.  I’ve said before that the best qualitative researcher in the transgender community is Helen Boyd, author of My Husband Betty.  At Helen’s recommendation I’ve also read a few things by Raven Kaldera that have been pretty good, particularly his post on female transvestites (which has somehow disappeared from his website).

There is only one person out there who has ever collected data from a representative sample of any transgender community, and that’s Niklas Långström of the Karolinska Institutet in Sweden.  He’s not focused on the transgender community, and he’s associated with the pathologist Kenneth Zucker (who is not someone we want involved), but he does know how to do a national survey, and it would be worth every penny for HHS to fly him over from Stockholm for the Roundtables.

If they can’t get Långström, then I want to be on that Roundtable.  I don’t have a degree in psychology or public health, but I did take an elementary course in statistics, and I learned what you have to do in order to make a generalization.  But what matters more than any qualification is that I care about doing this right.  If they can’t find anyone else who does, I want to be there.

Am I missing anyone? Are you doing quality quantitative research? Please let me know.