Thursday, December 17, 2009

After I Left AIDS - Part III (more thesis)

I didn't want to study suicide.

Mainly because suicide is a bummer of a topic. It reminded me of unpleasant memories from adolescence. And whenever I talk about it, the first thing everyone does is get quiet - then they get concerned about my well-being. Which is nice and all, and I appreciate it, but after working on this stuff for a few years, I would forget the level of emotional charge the topic has, and get really excited about some finer point of data analysis, and come off sounding callous when really all I wanted to share was this exciting little piece of the puzzle.

On the other hand, epidemiologic studies of suicide go way back (to Durkheim in 1897, and before him Morselli in 1881), and unlike most health conditions associated with sexual orientation, suicide has been measured in a consistent way across the whole population for an extended period of time. So, in a sense I was stuck with it as the only health outcome that had both geographic and temporal scope, which is what I needed to look at normative heterosexuality.

So anyway, as I mentioned before, I wanted to look at how heteronormativity (a shared set of assumptions about sex, gender, and who ought to be having sex with whom) affected suicide rates.
At first, I wanted to find a data set where I could could compare gay men, lesbians, and bisexuals to heterosexuals. But the death certificates don't have that kind of information. And as I got to thinking about it, even if they did, how reliable could it be?
And that got me to thinking, maybe the sexual orientation of these people is really beside the point. Perhaps the stresses associated with dealing with assumptions of heterosexuality are greatest among people who don't identify as "gay" anyway.

So, the first study I did was to look at gay rights laws as a measure of heteronormativity, the idea being that in order to enact a gay rights law, politicians have to believe that public opinion is such that they'd be better off protecting sexual minorities from discrimination than not. The first gay rights laws were enacted in 1973, in San Diego and Austin, I believe. In 1981, Wisconsin was the first state to pass a gay rights law, and by 2003, most of the country's population lived in a jurisdiction with a gay rights law. (the gray map there has a nifty time-lapse).
I looked at three levels of gay rights protections, in order to get something like a dose-response curve - the red areas had no protections whatsoever, the green areas were protections for public sector workers only, and the blue areas had protections for both public sector and private sector workers.

And the results here are pretty compelling - at least for White males, particularly adolescents, young men, and the elderly.
Each color in this graph represents a different age group. So, among White males aged 15-19, suicide rates were 179 per million in areas with no gay rights protections, 155 in areas with protections limited to the public sector, and 131 in areas with protections for all workplaces. The only group without a step-wise dose-response was White men aged 45-64.

Among White women, the first thing to notice is that suicide is less frequent, and also doesn't increase among elderly white women, unlike men. The decline in suicide rates with increasing levels of gay rights protections is also not so pronounced, but there are declines in each of the age groups under 45.

Suicide is less common among Black men than White men in the US, but is still pretty high. And unlike White men, the peak incidence of suicide is in younger age groups. But what is strikingly different is that the highest suicide incidence among Black males is in areas with the highest levels of gay rights protections, which suggests to that public opinion among Black populations about homosexuality may not be strictly related to public opinion among White populations from the same area, and presumably the enactment of gay rights protections is, in most jurisdictions, reflective mostly of White public opinion. I'd love to do an analysis based on what might be a better measure of heteronormative assumptions in Black communities. Any ideas?

Among Black females, the incidence of suicide is lower than the other populations above, and like White females, declines among older women.
The differences between areas with and without gay rights protections are not large, but in general, suicide rates among Black women tend to be slightly higher in areas with gay rights protections. So these results also raise questions about whether gay rights laws are a good measure of heteronormativity for all populations. Or alternately, if the social forces leading to suicide are perhaps not identical among White and Black populations - perhaps heteronormative assumptions cause more distress in White populations, particularly among White males, while economic issues and racial discrimination play a larger role in Black populations.

Another consideration is that perhaps the stresses induced by heteronormativity are largely related to the performance of masculinity, which is why men turn violent against themselves under these pressures. Perhaps men under heteronormative pressures also direct violence outwards towards the women closest to them, and thus homicide, rather than suicide, might be a more strongly related outcome among women. That's foreshadowing to an analysis I'm thinking about doing next...

The patterns I noted are virtually unchanged after adjusting for a wide variety of potential confounders, namely population density, region of the country, unemployment rate, poverty rate, and measures of social isolation (proportion living alone, proportion who moved in the last five years).
Also, when I looked only at those areas that changed status (went from no protections to having gay rights protections), the same trends held up, so in order to explain these results, some other factor would have to be changing at the same times in the same places, which seems like too much of a coincidence to be possible.

The trends above are very similar when I looked at how people vote on the restriction of marriage to "one man and one woman" as a measure of heteronormativity, but as I mentioned before, the strong trend towards people being less likely to endorse a restrictive definition of marriage makes this measure a bit more complicated, so I'm trying to figure out how best to represent it.

Sunday, December 13, 2009

After I Left AIDS - Part II (Thesis)

So, after I left AIDS, I got thinking about how homophobia, as a societal norm, affects health. Not just queers' health, but how it also affects the health of the whole population.

In my last post, I talked a bit about my journey through thinking about health disparities, and how nobody seemed to be measuring the causes of these disparities. That leads directly to my doctoral thesis, which was about how to measure normative heterosexuality, and from there, estimating the impact of it on suicide. Not just on "gay" suicide, but suicide in the whole population, and also in various sub-populations defined by sex, age, and race/ethnicity.

So, following the lead of thinking about residential segregation by race/ethnicity, and income inequities, I began thinking about how to measure normative heterosexuality, the presumed cause of the health disparites that epidemiologists had begun to document with greater and greater precision.
How do you measure the degree to which a group of people (a large group of people) share a rigid set of beliefs about sex, gender, who ought to be having sex with whom, and how? My first thought was that the frequency of hate crimes directed against gay men would be a good measure. If this set of rigid beliefs dominated a social setting, then the informal "enforcement" of those beliefs would be enacted through the commission of bias-motivated crimes, presumably mostly by young men with "something to prove".

When I pulled the data down off the FBI's Uniform Crime Reporting (UCR) System, I quickly realized something was amiss. San Francisco had by far the highest number of anti-gay hate crimes in the country, and several Southern and Mountian states reported not a single one.

I've put more recent statistics by state in a table, based on numbers from 2004 to 2008, the five most recently reported. Basically the same trend holds - bias-motivated crime tends to be higher in places we think of as gay-friendly, and extremely low in the deep South. Then there are also strange jurisdictional oddities - Pennsylvania for example appears to have an extraordinarily low rate of bias-motivated violent crime.

The way I've come to understand this data is that it represents not the phenomenon of crime occurring, but rather on two phenomena: 1) how comfortable victims feel about reporting a bias-motivation to law enforcement, and 2) local law enforcement customs and legal constraints about recording and validating these reports. If it was just the first of these, then one could use the reporting of hate crime as a measure of homophobia at a societal level, that is the more hate crime reported in an area is evidence of how little homophobia there is there, as perverse as that sounds. But alas that second factor, particularly the bit about jurisdictional quirks in how different local law enforcement agencies deal with the reports that are made to them, really throws the whole thing off.

So, I couldn't use hate crime statistics. But maybe I could use the presence or absence of a law for reporting hate crime statistics that specifically included sexual orientation. Or, how about the presence or absence of a law prohibiting discrimination on the basis of sexual orientation?

So, the next thing I looked at was which states had gay rights laws, and when they were enacted. Various of the states have enacted gay rights laws over the years, the first being Wisconsin in 1981, a few more in the late 1980's, and a lot during the 1990's. Recently, state-by-state gains have slowed considerably, as gay activists have pressed for a national law (ENDA), or been distracted by the marriage thingy.
The point for my purposes is that the enactment of state-wide gay rights laws has been a pretty hotly-contested issue, debated for years within each state's legislature, rather than by a small cadre of legalistic judges, or the flash of public opinion of a referendum. As a result, the enactment of a gay rights law represents something of a local watershed, the point in time at which the balance of adverse consequences for elected officials switches from a net negative to a net positive.
So, looking at the enactment of gay rights laws seemed to hold promise, at least from a theoretical perspective, as a good measure of the broad social environment of a State in regards to the level of normative heterosexuality.

Another potential measure of normative heterosexuality to be considered is public opinion polling. The gay rights law thing seems a bit crude - a yes-or-no variable to measure something which I claimed varied by degree from one place to another, and one time to another within those places. Public opinion polling, on the other hand, offered the promise of a finely-tuned measure of normative heterosexuality. There are some relevant questions that have been asked the same way for decades. For instance, Paul Brewer has examined the time trends in how Americans feel about the "wrong"-ness of same-sex sex, which increased during the AIDS years, followed by a precipitous drop recently, the majority of Americans now saying it is not "always wrong" (small consolation that!).
So, public opinion polling looks like it might be a better "thermometer" to gauge how people feel about homosexuality. And there is longitudinal data to work with, so I could look at changes over time.
On the other hand, public opinion polls, by design, ask the smallest number of people possible in order to get accurate results. Thus a "large" national poll might have only 500 respondents. The GSS from which the data above is generated is a good bit larger than that, but still it is only a few thousand in any given year. A few thousand sounds like a lot of people, but what I needed to do was compare across places, not just time. So a few thousand breaks down into a few dozen in some states, and in others, fewer than ten. It would be a stretch to characterize the whole State of Connecticut based on how 15 randomly chosen people answered a question (for the record, I'm pulling that number out of thin air, but that's about what it comes down to).

So I was stuck with public opinion polling, too. Good temporal trends, but lousy in terms of geographic specificity.

A related idea was to look at how people voted on anti-gay referenda, such as the Briggs Initiative in California in 1978, Measure 8 in Oregon in 1988, and Colorado's Amendment 2 in 1992. These explicitly anti-gay referenda had the advantage of high geographic specificity, presumably accurate down to the precinct level, but represented a snap-shot in time. Also, they represented a small number of states, and the questions addressed in each one were quite different.

While I was working on my thesis, though, another opportunity to think about voter referenda came up. The issue of same-sex marriage cropped up. Although same-sex marriage has been contested in U.S. courts since 1970, it had never gotten much notice one way or the other - the Christian right didn't feel threatened by it, and most gay acitivists thought marriage was a non-starter politically, or at any rate a horrid reminder of heterosexuality run amok that should not be emulated.
But in 1998, Hawaii and Alaska voters chimed in on same-sex marriage, a few more did in the 2000 and 2002 elections, and then the 2004 election was swamped with voter initiatives to restrict marriage, in part a cynical manipulation by Republic Party operatives in order to keep their guy at the helm.

These referenda share the problem that opinion polling data have, in that they are a snap-shot in time (except for a few states which have had multiple referenda on this issue), but there were major advantages. For one thing, the question being asked was nearly identical in every state, some slight variation on whether legal recognition of marriage should be restricted to "one man and one woman". As an aside, no state has yet offered to restrict marriage to "one woman and one man" - something to consider when thinking about marriage as a forum for liberty and equity. And, the geographic scope was huge, with most states chiming in on the issue one way or another. The map I made here shows how different areas voted, from strongly in favor of restricting marriage (red) to being against restricting marriage (dark green).
On the whole, this map comports more or less with what one would expect, there's more red in the rural areas, more green in urban centers and on the Pacific coast, and there seems to be a trend towards more green in the Northeast. But there are some unexpected spots, too, such as South Dakota, which was substantially less in favor of restricting marriage than its neighbors Nebraska and North Dakota, And Arizona, which was the first state to reject restricting marriage in 2006 (alas, they went to the dark side in 2008).
So, there are some tricky issues to deal with in using this data. I haven't quite figured out how to make it comparable across time periods.

The final method I've thought of for measuring normative heterosexuality is using counts of same sex couples. The number of same sex couples was counted (albeit inadvertently) by the U.S. Census in 1990. For the 2000 Census, they did a better job of it, and the upcoming 2010 Census is expected to do better yet.
In any event, the number of people who identify themselves as married same-sex partners and un-married same-sex partners in the Census is probably mostly a factor of three forces: 1) How comfortable people in same-sex couples feel identifying themselves as such on the Census forms; 2) The degree of selective in-migration and out-migration of people in same-sex couples (or destined to join one), and 3) The degree of confusion by people in mixed-sex couples who inadvertently identify themselves as same sex partners.
The first two of these factors (net migration and comfort identifing as a same-sex couple) are related to what I want to measure - how accepting an area is of homosexuality. The third factor is a pain in the butt, not in a good way. I've discussed that issue at length before.

So, counting same-sex couples has two huge advantages: it uses the same methodology for the entire United States, and you can get comparable data down the the neighborhood level (census tracts). On the other hand, the data itself has some big caveats - it doesn't identify young people, single people, or couples living in separate residences, and it is essentially useless when considering older people (for reason 3 above). And although there will soon be three time points to compare, the methodology has changed in each Census, and it remains to be seen if the 2010 Census data will be comparable to the 2000 Census data (probably not, but for the reason that the methods are becoming more accurate).

So, in the end, I decided to pursue three measures of normative heterosexuality further:
1) The enactment of gay rights laws,
2) How people voted on referenda to restrict marriage to one man and one woman, and
3) The proportion of same-sex couples identified in the Census.

More to come...

Wednesday, December 9, 2009

After I Left AIDS - Part I

About a month ago, I wrote about Why I Left AIDS, but didn't get around to what I'd moved into.

While I was working in gerontology, and started taking classes again in public health, I was trying to figure out what I wanted to do research on. I knew it wasn't HIV/AIDS, and most of the other health outcomes related to gay men (suicidality, depression, substance abuse) were kind of downers. The depression bit hit close to home, and the substance abuse felt completely foreign to me, so I didn't really know where to go.
At the time, in gerontology, I was working on a variety of measures of regional variation in social conditions to try to explain health disparities. We had noticed a big difference in the occurrence of pressure ulcers (bed sores) by racial identity. While it was interesting for me to crunch large datasets, and to work with colleagues to figure out a narrative that might explain the health disparity, documenting the disparity and theorizing about why it occurred seemed unsatisfying. I wanted to measure the cause, not just the effect.
I had also been a teaching assistant for the epidemiology class at Brown for many years at that point, and we always chose an article about the link between residential segregation along racial lines and some health outcome or another, usually birth weight or premature delivery. The idea was that racial segregation, the separation of people in space, reflected social segregation, or the history and current strength of racial hierarchical ideology.
So it was a natural connection to say, hey let's look at whether the health disparity in bed sores is larger in cities characterized by high levels of racial segregation than it is in cities where people are more evenly distributed.
Unfortunately, we never got around to writing that paper (I don't think we even got to the analysis stage before I moved on), but the point is, I spent long hours figuring out how to measure, in a quantitative sense, the racial segregation of where people live, and also the levels of economic disparity (gap between the rich and poor), and how these measures vary across the U.S.
Roughly at the same time, I began to think that I wasn't so interested in documenting the extent of health disparity there was between gay men and straight men, lesbians and straight women (and there was almost no literature on bisexuals, and even less on gender identity), I was interested in measuring what causes the health disparities that do exist.
At first, I tried to think about measuring homophobia in high schools. In my own life, high school was definitely the most homophobic environment I had survived, after all.
I figured that one way to do it was to ask a wide range of students who had graduated and gone on to college to rate their high school environment with regards to homophobia. Having gone to college, they would have at least one other environment to compare to, some perspective. And by asking them about the school environment, rather than their personal experience, then queer kids and straight kids would both have valuable and relevant insights and perceptions on the issue.
I developed a 20-some odd page questionnaire and tested it on maybe 40 or so Brown undergrads, queer, straight, and in-between. At that point, it was an exercise for a survey design class I was taking, so I wasn't particularly interested in scientifically important questions like inter-rater reliability, I had a much more mundane purpose - did recent high school graduates feel like these questions made sense? Were they salient? Were they getting at what I intended them to get at? and was I missing anything?
It was a great experience (for me, anyway). And the questions did make sense (most of them), they were on target (most of them), and there were a few things I had missed. I was convinced that it was worth taking it to the next stage.
I began thinking about how to use it. It was one thing if one could describe the social environment, it was another to use it to predict health or health behaviors. In conversation with a student (Marc), we had an idea - which was to measure the homophobia at a series of high schools where more than one student had died of self-inflicted injuries to high schools where no student had died of self-inflicted injuries in many years, and to measure the extent to which the school social environment was infused with homophobia in both sets of schools.
And here's an important point - whether the students were queer, straight, or in-between was not relevant to our plan. It wasn't going to be a study about who had killed themselves, but about what sort of environment drives people to the point of ending their lives.

So maybe you're seeing a thread here already - the vast majority of research literature on queer health is about documenting the bad things that queers (and usually gay men specifically) are at higher risk for. But I wanted to take a different tack - I wasn't so concerned with what the specific health outcomes were, but the cause of them, and specifically, the cause in the sense of the social environment.
And this opened up a new possibility - examining the influence of the perfusion of homophobia in social environments not just on queer people, but on the whole population, on straight people too.
My involvement with ActUp/RI was highly influential in getting me to think about homophobia as a health hazard, but in that context, I thought about it as the reason the government was letting gay men die without saying a word, literally. Or when words were spoken, they would be words of condemnation, threats of quarantine, of judicial prosecution for having an infections disease, of punishment for exposing the "general population" to a scourge that we deserved but they did not.
Instead, I was now thinking about homophobia as a threat to the whole population.

More to come...

Monday, December 7, 2009

Breast Cancer Screening Controversy

I'm going to be teaching two sections of epidemiology this Spring, one for grad students, one for undergrads.
The grad student version I'm pretty confident about, but I want to change a few things, especially the cumulative paper that I ask the students to write throughout the semester.
The other thing I'm thinking about is pulling in the breast cancer screening controversy, which seems to have long legs, re-appearing in the news on a regular basis. I had been thinking about H1N1, but to be perfectly honest, it hasn't been able to attract my attention (not the way the 1918 war-fueled epidemic did anyway).
For the undergrads, I'm trying out a new textbook (new to me, anyway), which has more pictures. I haven't been able to find a good textbook for undergrad epi, and the worst are the ones that say that that is their target audience.

Anyway, back to breast cancer screening. I think it's a great issue to tussle with. It has a lot of emotionally laden content in addition to "the science". The science itself is complex and fascinating, and really engages all forms of epidemiologic study designs, from case-control studies to massive experimental trials, and concerns epidemiologists have about sources of error and misleading results.

Also, one of the pioneering epidemiologic researchers was Janet Lane-Claypon, who did a case-control study comparing 500 women with breast cancer to 500 women without breast cancer, and confirmed most of the risk factors that we now know have a large influence on the development of breast cancer, in 1926. I like having a historical focus in my class, and it bugs me that that means reading exclusively male writers in a class that's predominantly made up of women.
I'd also like to include more of the large corpus of early writing from Spanish language authors, but I'm not familiar enough with it, and the few pieces I have seen translated just wouldn't fit well into my curriculum. (Perhaps it's time to expand my curriculum, then!)

But back to screening. I myself didn't think much about breast cancer screening, until my mom got a positive mammogram. It pretty well freaked her, and me, out. Weeks of anxious anticipation were not erased after minor surgery removed what turned out to be perfectly benign calcified lumps. But still, what if it had been cancer, wouldn't it have been good to know earlier rather than later?
The more I've thought and read about it, the more I've come around to a different point of view - it probably wouldn't have been better to know about it earlier. I know that sounds harsh to anyone with breast cancer, and easy for me, given that it wasn't breast cancer. But I don't say it glibly. The unnecessary anxiety, the unnecessary (if minor) surgery, these are not benign side effects. They may be mild inconveniences compared to mastectomy, chemo and/or radiation. But really how many unnecessary side effects are we generating with screening mammograms compared to how many treatable breast cancers that get detected (and wouldn't be equally treatable after they grew a bit and became diagnosed by other means)? How many breast cancers are detected and treated with highly toxic and invasive methods that, left alone, would never have caused a problem? Those are complicated questions that are technically challenging to answer.
Then, there's also an issue of where we, as a society, spend money. I don't think that costs should be a determinant of what health care people get. In a previous post, I lampooned the idea of doing a cost-benefit analysis of vaccination against HPV. The more effective a vaccine campaign is, the less cost-effective it would be, so it's just silly to do a cost-benefit analysis in the first place.
But at the same time, one wonders if all the attention paid to promoting mammograms as the one thing you can do to prevent breast cancer has crowded out other means of preventing breast cancer. Methods that may be less sexy, and less under an individual's control. Why does preventing breast cancer have to be something each woman does for herself? What about pesticides and environmental pollutants that probably have a very small influence on any one woman's risk of getting breast cancer, but by increasing all women's risks somewhat, have a large societal impact? What about the disparities in the levels of these pollutants that often mimic disparities in class and race in this country? What about addressing the structural poverty and disenfranchisement that keeps women from having symptomatic breast cancers dealt with early on when it's more treatable? These methods at least give men something to do!

Tuesday, November 10, 2009

Why I Left AIDS

I left AIDS in the mid-late 1990's.

I made a conscious decision to stop working on HIV/AIDS, and to stop referring to HIV/AIDS when talking about gay health.

In short, I was over AIDS.

I wanted to force myself into a new idiom, a new way of thinking. I had no idea what it would be, but I had come to the conclusion that continuing to work on HIV/AIDS would be detrimental to me personally, and might well not be helping anyone else either.

I wish I could say that I had some inspired moment, that I had some vision of the future of queer health, some goal in mind, some grand theory. But in truth I had none of those things. Gradually, I began to realize that working on HIV/AIDS felt increasingly distant from my personal experience I noticed that it was harder and harder to interest my friends to get active, it was even hard to know what to get active about.

But maybe I should start a little earlier.

I was a little fagling in 1987, a momentous year in queer history. In 1986, my freshman year of college it began to dawn on me that it was not a passing Ĺ“dipal phase, that my attraction to other guys was not merely admiration of their physical form, to be replaced at some point in the future with an attraction to the voluptuous female form, marriage and children.
This was distressing to me, because my only image of an adult gay man was not what I wanted to become. Don't get me wrong, I didn't want to be "normal", I just didn't want to be lonely, depressed, and ridiculed for the rest of my life.
I quit the crew team, partly because I was not going to be competitive at the level required, but mostly because I just didn't see any possibility of being happy, healthy, and vibrant as a gay man.

I slowly began meeting other gay men, particularly Chris Bartlett and Stephen Gendin. Then in October 1987, Chris invited me to vanpool down to DC for a March on Washington. It totally blew my mind. For the first time in my life I saw happy, healthy, vibrant gay men. I kissed one of them, for about six hours, while driving around from one spectacularly lit patriot monument to another.

I came back to Providence transformed. I realized that I could do this gay thing after all.
My then (and current) roommate calls it my militant phase. I painted pink triangles on the back of my hands. I gave out "queer fries" at the snack bar to anyone who would publicly say they were gay or lesbian. I proselytized to anyone and everyone.

In early 1988, Stephen invited me to "come get arrested". I said "sure" and then it took me a week to ask "what for?" He told me it was about gay rights, and only during the civil disobedience training did I learn that it was really about AIDS, about trying to keep the Health Department from doing widespread mandatory HIV testing, and compiling a list of everyone who tested positive for some as yet to be determined intervention. I kinda freaked out. I had begun to come to terms with the gay thing, but I was scared to death of AIDS and didn't want anything to do with it.

But Stephen was inspirational, and I stuck with it, becoming one of six people arrested in H. Denman Scott's office on the fourth floor of the Health Department. I'm the one in the purple shirt with a green knapsack.

Thus began a long and industrious career with ActUp/RI.

We never needed to get arrested again, it just doesn't take much of a fuss to get on TV in Rhode Island. We disrupted Ed DiPrete's gubernatioral candidacy announcement, we protested the high price of AZT, we joined in national actions at CDC and FDA. I started writing a weekly summary called Bill's News Headlines, a 'zine about all things HIV/AIDS, with a few spicy pictures thrown in for interest.

Under the Reagan Administration, AIDS was largely ignored, until it wasn't. In the late 1980's all kinds of scary talk was coming down, including threats of quarantine. We had a clear and obvious enemy. Those of us young enough and pissed off enough rose up in anger and began a confrontational style of political action that the generation before us was too overwhelmed to undertake.
But when George the first took office, things began to lose traction. Many of our initial demands were being met (AIDS drugs cost less, mandatory testing and quarantine were mostly averted, some government resources began to flow into aid programs, some of the egregious ethical violations inherent to clinical trials of new medications were being abated). The newer issues we were grappling with (needle exchange, anonymous HIV testing) just weren't as sexy. We had a few more big demos (notably a big coalition bash at the Providence Journal, and a fun hootin' and hollerin' when Dan Quayle came to town), but things were starting to taper off. We started meeting with the Health Department, in addition to chastizing them. I even worked there on an internship one semester.
And by the time Clinton came along, all the air got let out of the balloon. Don't get me wrong, Clinton the first did as little as possible to advance the cause of people with HIV, and was arguably one of the worst presidents we've had on gay rights. But the community had had enough. It just wasn't possible to gather a crowd of pitchfork-wielding townspeople any more.

By this time, I was working in HIV/AIDS clinical research. Doing some statistical presentations of data from clinical trials, and medical record abstractions. I began keeping a list, for the medical researchers, of everyone that had been treated for HIV in Rhode Island, what major infections they had had, when they started treatment, etc. I felt pretty conflicted about that, and at the same time fascinated by the stories I was reading between the lines of lab reports and hospitalization records.

The job took me to an AmFAR conference in San Francisco. I fell in love with the city instantly, despite having an earthquake knock my hotel bed around the room my first night in town. I loved how it smelled. I loved the hills and the views. It seemed impossibly magical.

I vowed to move to San Francisco at the next opportunity, quit my job in HIV clinical research, and had all but bought the plane ticket when I got invited to take a job with the tuberculosis and HIV basic immunology lab at Brown. The pay was good, very good. And I figured, what the heck, I can do this for a couple years more, then go out to San Francisco. In the meantime, for several years I got in the habit of taking a month-long vacation in San Francisco every January, staying at the YMCA on Golden Gate & Leavenworth. Everything I needed to pack for a month fit in one bike messenger bag.

Well, I worked on that stuff for a few years, developed a mathematical algorithm for predicting amino acid sequences that would be likely to trigger an immune response, and had a lot of fun while doing it. Got to work with some very motivated and bright undergrads. Got to travel to a bunch of conferences. Even got a pat on the back from Tony Fauci at one point.

But at some point, I realized I needed a break from the frantic pace of HIV research.
HIV/AIDS was the most important thing in the world, or so it seemed. Everything was urgent. HIV/AIDS was an exception to every rule. But after the better part of ten years on the cutting edge, I got weary of being cut. I needed a break.

I began looking for another job, and quickly found it, in the much tamer field of gerontology. I got to work with incredibly bright, talented, and caring people. People who were interested in getting things done carefully, slowly, correctly, not living in a state of perpetual emergency. I had an amazing boss, who really helped me work much more effectively with other people (do you remember the 7 habits of highly defective people - I had probably 4 of them - I was not an easy person to manage).

So at first, I was just taking a break, not really thinking about HIV/AIDS, except about how futile it seemed to be to think about it.

At some point, though, I did make a conscious decision that I would not work on HIV/AIDS again. I wanted to force myself to think differently, to force myself to be more creative, to develop a new language and vocabulary, and whole new mindset.
As I was struggling to do that, I put together a forum at Brown about the Post-AIDS phenomenon. I invited Chris and Stephen as panelsits, after getting re-connected with Chris at the Boulder Gay Men's Health Summit, and also invited Justin Smith, a next-generation activist. It was a fantastic discussion, and there was plenty of passionate but respectful argument.
I made an analogy at the outset that Post-AIDS, in my mind didn't mean that AIDS was over, any more than Post-Modern means we are no longer modern. But the shock of modernity is largely over. The automobile has gone from being a bizzarre new sight on our city streets, crowding and running over pedestrians and cyclists, to being banal, a fact of life (though still running over pedestrians and cyclists - I've got the chronic pain to prove it - it's just banal and mundane now). Electric lights are no longer a showy extravance. It is not that modernity is done modernizing, but rather that the progressive development of wonderful, exciting, and dangerous new technologies is expected and welcomed.
My analogy to the term Post-AIDS was that the shock of AIDS was over, that we were now living in a world where AIDS is part of life, and that public health prevention efforts revolving around HIV as new, threatening, and catastrophic may have worked in the past, but would no longer work in the future. We needed to find new language, new ways of thinking about public health's role in prevention, because the tools of fear and hyperbole have run their course. We are in Post-AIDS now, but HIV prevention has yet to catch up to that reality.

Some ten years later, there are some exciting new developments on the gay health promotion front, such as Chicago's How are you Healthy? campaign, which is all about tying the three words "Gay. Sexy. Healthy." together in new and interesting combinations. The I Am Gay And... campaing in New York City is another one I like a lot. But these two are exceptions.
We're still bombarded with ad campaigns like this one, this one, this one, and this one that either play on fears and negative imagery, or treat us like we're just not knowledgeable enough to know what's good for us.

Well, I've wandered and rambled quite a bit here, and I'm not sure that I've adequately answered the original question - why I left AIDS. But it's a start.

I'm really curious about what some of the stories of the thousands of gay men who have left AIDS work - what did it feel like? What are you doing now instead? Do you, like me, feel conflicted about abandoning the AIDS work, even if what you're doing now is much more productive and forward-looking?

Wednesday, November 4, 2009

Quick Trip East

Went back East for a week to see my parents. Here they are walking through a small orchard of apple trees planted a very long time ago (probably about 100 years or so) that I've been pruning. The apples used to taste awful but now they're pretty good. They are varieties that are not commercially viable (too small and bumpy), so you can't find them in stores, even specialty markets.
My mother says that one of them is called a "banana apple" which she recognizes from her father's farm in upstate New York. It's true, it's an apple with a faint whiff of banana as you bite into it.

Also stopped into Providence to try to do some work on my house. Got a bit frustrated because the windows I wanted to replace I have to special-order, so mostly I frittered around with some electrical work and painting instead.

I've come to the solid realization (yet again) that I need to work tirelessly towards getting a full-time teaching job. Not only do I love teaching (and I'm getting pretty good at it if I may say so), but I need to be connected to the land in Vermont that I've put so much time and effort into, and the best way to do that is to have the summers off.

Wednesday, October 21, 2009

HPV Vaccine for Boys? No (and Yes)

The news about HPV vaccine for boys lately has been mighty confusing.

An FDA panel approved the use of an HPV vaccine in boys to prevent genital warts in September with a 7-0-1 vote.

Then an article came out in early October, sponsored by the CDC and others, suggesting that vaccinating boys to prevent cervical cancer in girls would not be cost-effective (more on that later).

And then today, a CDC advisory panel chose not to recommend HPV vaccination in boys. Apparently, the CDC-funded study weighed heavily in the committee's deliberations.

The upshot is that a doctor can write a prescription for HPV vaccination for a boy, but because it is not recommended, very few doctors will bring it up as an option, and no health insurance plan will pay for it.

Benefits of Vaccinating Boys Against HPV
1) The vaccine prevents getting genital warts. Sure, genital warts are mostly a minor nuisance, but tell that to someone who's had a few hundred warts cauterized up in his butt. Ouch!

2) The vaccine probably prevents anal cancer. No study is ever likely to prove that the vaccine prevents anal cancer. It is too rare, and takes too long to develop. But it doesn't take a genius to figure out that if the vaccine prevents getting the HPV strains that cause anal cancer, it will prevent anal cancers. Interestingly, this benefit is often dismissed as not a real problem, because most anal cancers occur in gay men (and nobody's son will grow up gay?).

3) The vaccine probably prevents a bunch of other, though rare, cancers - penis cancer (yes, there is such a thing), and cancers of the head and neck, primarily. Admittedly these are pretty rare. But if they can be prevented, why not?

4) Vaccinating boys prevents cervical cancer. Huh? But only people with a cervix (born female) can get cervical cancer. OK, but how are they getting HPV? From "Immaculate Infection"? No, from men and boys (for the most part). So, vaccinating boys is crucial to having a successful strategy for reducing the prevalence of these HPV strains in the population, thereby reducing the chances that a woman or girl will get infected, either because she didn't get the vaccine, or because it didn't work.

Lousy Vaccine Policy
The problem with contemporary U.S. vaccine policy is two-fold. Vaccination policy is strictly limited to worrying about individual risks and benefits, and vaccination policy is couched in terms of cost-efficacy, a framework that doesn't make sense.

Individual Benefits Only
So first, the individualized approach to vaccination strategy assumes that nobody else benefits from you getting vaccinated. So, if there is not an immediate benefit to you, don't get vaccinated. Because the individual, albeit miniscule, risk to you outweighs any potential benefit to others. And since men can't get cervical cancer, it is irrelevant that men and boys can infect women and girls with the virus that does cause cervical cancer in them.
That's not how vaccination policy has always been done. Smallpox vaccines were given to lots of people who had a next to zero risk of getting it, because the risk to society of having smallpox come back was too high. Same with polio. Today's vaccines are a lot safer than those vaccines were. The shift came with the HBV vaccine, when individualized risk-assessment was used to guide vaccinations, a policy that largely failed for the first two decades, and thousands of Americans are paying the price with HBV infections they didn't need to get, because a safe and effective vaccine was bottled up in a bureacracy of risk-assessment.

Cost-Efficacy. You're Worth $50,000 a Year.
Second, cost-efficacy is the wrong framework for evaluating vaccination strategy. For one thing, it is fairly arbitrary to say that a year of healthy life is worth $50,000, but not $100,000. By that logic, it wouldn't make sense to treat many forms of cancer, or advanced HIV infection, etc. Because if your treatment costs more than $100,000 in a year (which is not hard to do if you get surgery, chemo and radiation therapies), it exceeds the 'value' of your life for that year.
But that's exactly the logic of the CDC-funded article I linked to above. At $50,000 per year of healthy life saved, vaccinating girls is worth it. But at a little bit higher than $90,000 per year of healthy life saved, vaccinating boys isn't.
The study was also funded by the American Cancer Society, which recommends cancer screening programs that cost many times higher than that, and some of which (mammograms in women under 50, PSA tests), may well cause more human health harm than good, so could not be considered cost-effective at $10 billion per year of healthy life.

More fundamentally, cost-efficacy ignores any societal benefits acheived through reducing the prevalence of HPV infections. There is no space in the calculation for the benefits to society from reducing one's exposure to HPV because fewer people in the population have it. By the logic of cost-efficacy, if the vaccination strategy were somewhat effective, and reduced the prevalence of HPV infections by half, then the cost of a year of healthy life saved would rise to $100,000, and this logic would dictate that we should stop vaccinating girls at that point if the vaccinations are successful.
If we had pursued that strategy with smallpox and polio, we would have vaccinated people when the prevalence was high, but as soon as it got down to an acceptable annual cost to just let people get sick, we would have stopped the vaccinations, and we would not have eradicated smallpox from the Earth, or polio from almost everywhere.

Gloomy Predictions for HIV Vaccination Strategy
All the signs point to these forms of illogic being applied to the HIV vaccine, when it becomes available. First, vaccinations will be targetted only to "high risk" individuals, meaning that doctors won't think to ask if you want it, insurers will not pay for it, and you'll be hard-pressed to find it in-stock anywhere, meaning that you'll need to visit your doctor to get the prescription, go to a pharmacy to pick it up, and make another trip to the doctor's office to have it administered. Second, the logic of cost-efficacy will almost certainly exclude recommending any HIV vaccine - which will be expensive, require multiple shots, and be only partially effective (maybe 1/4 to 1/2 of people would be protected).
Getting a vaccine that works, my friend, is the easy part of this battle.

So forget what's recommended. If you can afford to get your boys vaccinated for HPV, please do it. For them, and for the girls.

Sunday, October 4, 2009

Environmental Success Stories

Global warming. Air pollution. The ozone hole. Nuclear winter. Acid rain. Deforestation. Pesticides. Extinction. Industrial waste.

Poisons are everywhere, undetectable, and have unknown risks.

Everything you hear about the environment leaves you feeling threatened and helpless. Not only that, but usually you are personally culpable unless you spend a huge amount of money buying your share of the problem away with (insert environmentally chic and expensive food/clothing/transportation/lifestyle item here).
A pretty insurmountable trio of adjectives, threatened, helpless, and culpable.

Believe it or not, there are actually a lot of environmental success stories. Successes that are the direct result of the political action engendered by making us feel threatened, helpless and culpable.

Acid Rain
When I was a kid, everybody talked about acid rain, how it was killing the fish in the lakes, burning the trees. And it did. And it does still, but to a much lesser extent. Did anyone tell you that acid rain has gotten much better? That your outrage led to actions that severely curtailed the emission of the pollutants responsible for acid rain? That progress has been made even faster than what Congress anticipated?
Clap yourself on the back. We did it. Or, more correctly, we're doing it. Keep up the good work!

Air Pollution
You never hear about it, but the air is easier to breathe. Not everywhere, but in most cities, particularly in California and the Northeast, air quality has been getting better and better, thanks to some of the same measures that were taken for acid rain, but mostly because cars and trucks have become less polluting.

Deforestation is a huge problem worldwide. But not everywhere!
New England used to be about 80% de-forested. Now it is about 80% re-forested. Those new trees are a lot smaller than the old trees that got cut down. And the demand for wood in New England is largely met by exporting the problem to other parts of the world.
And yet, New England is rapidly re-growing a valuable renewable resource.
And nobody talks about what a huge success that is. How can we learn from what happened in New England and export that success as well?

The Ozone Hole
The ozone hole was first recognized in the 1970's, and by 1978, the main agents responsible were banned in most countries. We changed the propellants used in spray cans, and the refrigerants used in refrigerators. And although the ozone hole hasn't been shrinking, it has stopped growing quickly, and is expected to recover over the next few decades.
Problem caused. Alarm raised. Problem addressed. Let the healing begin.

Lead Poisoning
A huge success story is lead poisoning in children. You've probably heard about kids getting poisoned from lead paint. Too much lead causes brain changes that are not good. It's still a big issue in areas with older housing stock (but rapid progress is being made).
Not too long ago, virtually every child had potentially toxic levels of lead in their body, due to the lead additives used in gasoline that we all breathed in. That's gone now. And there's a huge generational shift in blood lead levels.

And there's more. The Nashua River used to stink to high heaven, it's banks were scorched clean. Now you can eat the fish you catch there. Bays have gotten cleaner. Alternatives to pesticides are gaining ground. Eagles are laying eggs that hatch. Wild areas are being protected. And so on and so on.

I remind myself of these stories now and again because I think feeling threatened, helpless and culpable is a pretty big waste of time.
I'd like to think that there's a way to motivate the public to address the serious environmental threats facing us that doesn't resort to backing us into that uncomfortable corner. And can we celebrate the successes, for once?

When faced with the newer threats - like global warming - and the old threats - like nuclear waste - I take heart in the fact that we've been able to make real progress on a lot of fronts in the past. I don't necessarily think that there's a technological fix to every problem, that there's a progressive inevitability to cleaning up after ourselves. But I also don't think we're living in a world that is on the verge of total collapse, either. And I vehemently disagree with the stance that the only real solution is to reduce the human population. We may cause the problems, but we're also the ones to fix them.
I think we can make a difference. We already have. Let's keep doing it.

Saturday, August 29, 2009


retreat. v. Seconds on dessert. I had a light supper, so I retreated myself with ice cream.

revenue. v. To move an event from its original location. The unexpected douwnpour caused us to revenue the wedding ceremony.

predate. n. The period of time before a date when you can think about nothing else.

distance. adj. Holding both sides of an argument simultaneously. The senator distanced himself on the Health Care debate, hoping that whichever way it went, he'd be able to declare a victory.

promote. adj. Supportive of the political aspirations of dust particles.

reveal. v. Milk feeding the calf of a cow that never left its own mother's teat.

prevent. adj. The hot clammy slap in the face you get coming home to an apartment that's been shut up on a hot muggy day.

represent. v. see retreat above.

propound. n. (Br.) see anti-euro.

Sunday, August 23, 2009

Research Worth Reading (3)

There's a myth out there that gay men are self-obsessed and narcissistic, and I for one don't buy it.
David Nimmons, in Chapter 3 of his book Soul Beneath the Skin claims that on the contrary, gay men are actually more likely to get involved in volunteerism and altruistic behaviors, in part basing that on the enormous outpouring of volunteer time and energy devoted to AIDS service organizations.

Well, this is the first quantitative random sample analysis that really tries to get to the issue of whether gay men (and lesbians) are more or less altruistic than straight people. And that goal is what makes it 'research worth reading', in my opinion.
This is one of the few analyses that examines assets, rather than risks; one of a very small number of quantitative analyses to do so. So regardless of the results, regardless of the methodologic challenges, this is an important read in terms of thinking about the health of sexual minority populations.
    Self-reported altruistic and reciprocal behavior among homosexually and heterosexually experienced adults: implications for HIV/AIDS service organizations.

    Susan D. Cochran, Vickie Mays, Heather Corliss, Tom W. Smith, Joseph Turner

    AIDS Care 21(6):675-682. June, 2009

The authors used data already collected as part of the General Social Survey (GSS), a random-dialed telephone survey of the US population conducted annully since the 1960's, a staple dataset for the social sciences.
They looked at four potential measures of altruism across groups of people defined by whether they reported ever having had sex with someone of the same sex, or whether they reported only mixed-sex sexual relationships. The sample size of the GSS is fairly large (they combined 2 years to get 2,031 people), but the number of men and women reporting same sex partners in their lifetimes was pretty small (68 men and 51 women), so they elected not to divide that group farther, but lumped together men who were homosexually active and bisexually active together, and the same for the women.

The GSS asked a 7-item scale intended to measure empathic concern (other-oriented feelings), a 4-item altruistic feelings scale (similar idea, as far as I can tell), a set of 11 altruistic behaviors (things that one does for others that have no self-serving interest, like giving directions to a stranger, even at some risk to one's self, such as donating blood), and 4 reciprocal behaviors (things that one does for another, but do have self-serving aspects as well, like helping someone you know find a job, or lending a friend a considerable amount of money).

They found that gay/bi men (at least in terms of reported sexual behavior) were very similar on all of these measures, in terms of the average. Of course, the average is just the average, it doesn't really say much about the distribution of individuals in the population, meaning there might be a bunch of gay/bi men who are much more altruistic (for example: helped 7 people find jobs, not just one) but that wouldn't be reflected in the average.

The lesbian/bi women were also very similar across all four measures of empathy and altruism.

So, the results are pretty vanilla. Looks like we're about as caring and other-centered as everyone else.

Blood donations
One interesting side note is that they found lots of people in GSS reporting having given blood recently, over 20% of exclusively hetero men, and almost as many of the gay/bi men. That's similar to what I saw in the same dataset and reported on here.
I suspect that there's something wrong with that variable, not because it shows lots of men with same sex sexual behavior giving blood, but because it shows many many more people of all stripes giving blood than actually do.
I don't know what the problem in GSS is about blood donation. Maybe a lot of people are interpreting it to mean gave blood ever in their lives, rather than just in the last year. Maybe a lot of people are interpreting having given a tube of blood for medical tests as having given blood. I don't know.
But at any rate, there are more credible results on blood donation in the National Health and Nutrition Examination Survey, which I reported on here.

Study limitations
The General Social Survey (GSS) is an amazing dataset. They ask tons of questions, and repeat a lot of them year after year. But, it is also very general, and not necessarily designed for whatever analysis you or I might have in mind, so when re-purposing it, it is important to hold in mind that the results may not be what they seem for a variety of reasons.
As is typical for epidemiologists, I'll break them down into three large categories: errors in assessing sexual orientation; errors in assessing altruism; and other factors that may be associated with both sexual orientation and altruism.

errors in assessing sexual orientation
The GSS is a telephone survey, and it is a really long survey. And not everyone pays close attention the whole time they are on the phone. As a result, some people inadvertently give answers that don't actually represent their reality, and in very rare cases, the interviewer records something other than what the respondent said.
All that would be well and good if a little bit of error here and there gets swapped from one group to another, but it gets problematic when one group is much smaller than the other (like sexual minorities). In this sample, 5% of the women and 6.6% of the men reported at least one sexual partner of the same sex in their lifetimes (since age 18). It's possible that maybe 4% of the women and 5% of the men really did have same sex partners, and the other 1-1.5% represent people who were inattentive or miscoded for some reason (this is purely hypothetical, there's no way to know what the error rate really is). So, if that were the case, then gay/bi men and lesbian/bi women would look more like straight people than they should, because a bunch of the people we think are gay/bi/lesbian really aren't (Scout's Law of Fake Queers).
The GSS actually has more opportunity than most datasets to check on this kind of error, because at different points they ask about sexual partners ever in one's lifetime, in the last five years, and in the last year. And there's always people who say they have had no sex in the last five years, but they have in the last year. No way to tell which of those is correct, but they can't both be true, so you can get a sense of the error rate that way. I haven't done that analysis myself, but it could be done.
Another way to check is to see whether the queers identified in this study look like queers identified in other studies. Most demographic studies have found that people who describe themselves as LBG, or who report same sex partners, tend to be slightly younger, more highly educated, and especially less likely to be married. In this study, they were somewhat younger (much younger for the women), but not more highly educated. The LGB people identified in this study were less likely to report being married, but still about 30% reported being married, which is pretty high.
For those reasons, I'm a bit skeptical that the GSS sample has really accurately described the LGB population, I suspect that there's a fair amount of 'slop' from the heteros mixed in with us.

errors in assessing altruism
Another potential source of error is if altruism is not measured accurately. This is an area I'm much less familiar with, in part because I just don't trust scales. The known inaccuracy of the blood donation question gives me some cause to interpret this study cautiously, but that could be a problem mainly with that one question for whatever reason, and not reflect systemically on the other measures in the study.

other factors associated with sexual orientation and altruism
I don't know enough about how altruism is distributed in the population. They separated the population by sex, and that's probably the biggie. There weren't enough people to do stratified analyses across any other variable (like age, educational attainment), but they did do a mathematically smoothed model to try to partially adjust for these factors simultaneously, and found no big difference from the overall results.

Full disclosure: Susan Cochran, the lead author on this study, was also the external reader for my dissertation. She and I have never discussed this paper, though. I don't think seeing her name on the paper made me especially more likely to choose it, I was hooked by the word 'altruism' before I saw that she was associated with it. I do think that knowing that she and Vickie write good research is why I asked her to be my external reader.

Thursday, August 20, 2009

Patricio gives a very moving account of his experiences at the Chicago LGBTI Health Summit here.

Wednesday, August 19, 2009

Social Network Theory in HIV Prevention, the Role of Metaphor and Scope

With the realization that social context plays a large role in HIV transmission in addition to personal behaviors, some people have turned to social network theory to help explain why HIV infection happens the ways it does, and to whom it does.
In turn, researchers, health promoters and activists have been struggling with (and arguing about) the implications for social network theory-based analyses on how to inform public health practice (for an example, check this out).
This post comes out mainly of a series of conversations with Michael Scarce & Peter Keogh, with my own special twist.

Wrong toolbox?
I'm going to argue that there is a profound disconnect between thinking about what social context means and how to design public health strategies that address social contextual factors, and social network theory as an approach for understanding the interpersonal dynamics of disease transmission.

Social network theory
From what I can gather, social network theory is about describing the linkages between people, and in the disease transmission context, using those linkages to help explain why a disease moves in the way that it does.

social network graph of friendships among 4th graders from Moreno, 1934, as cited by Linton C. Freeman. Visualizing Social Networks. Journal of Social Structure. networks are often invoked to explain why rates of HIV infection are different in different demographic identified groups, despite similar occurrences of personal behaviors across these groups. But usually the evidence for that interpretation is the observation that the groups have different rates of HIV infection, a circular logic. I'm not aware of anyone having done the kind of individual mapping necessary to show how (over the span of decades, with constantly changing linkages) these communities came to have different HIV infection rates.

The metaphor of a social network as a map of nodes and lines, in this case describing who is friends with whom in a 4th grade class in the 1930's, has a remarkable similarity to the 'web of causation' models elaborated in epidemiology, especially since WWII.

Epidemiology's 'web of causation'
Web of Causation for the Major Cardiovascular Diseases. R. A. Stallones (1966). Prospective epidemiologic studies of cerebrovascular disease. Public Health Monograph No. 76 metaphoric imagery of the web of causation is so vivid that a web to show linkages between causes and effects for any specific study is rarely actually drawn out. Usually, someone trained in public health sees one in their textbook at some point, then that's it. For illustrative purposes, here's an example from a 1966 US Government report. If you can reduce hyperlipidemia by reducing fat in a population's diet, or increasing physical exercise, this will reduce atherosclerosis, which in turn will reduce the clinical manifestations of heart attacks and strokes. The power of the 'web' among public health folks is that interrupting any of the pathways between causes, intermediaries, and finally disease outcomes can have a large impact on public health.

The similarity of these metaphorical representations I think is partly at fault for the way interventions based on the invocation of social network theory sound so strange.

When someone from Public Health sees a network of nodes connected by lines, our gut reaction is to start thinking about how to break them, so in this case, that translates into breaking social networks apart in order to limit disease transmission.

In the specific case of HIV prevention, this could mean, for instance, trying to interrupt HIV transmission by limiting the sexual vectors between younger and older men, since older men are more likely to have HIV.

But in a social network, the lines represent the substance, the sociality, of social networks. They are the sources of information, of resources, of resilience, not just vector lines across which bits of infectious protoplasm are transmitted.

So, any program designed to tear these networks apart, or prevent them from forming, seems counter-productive. Ripping the heart out of the communication of ideas and resources, the means men have to get support from one another, just to interrupt sexual connections between younger and older men is an exchange that even Faust would have been hesitant to make.

A kinder, gentler form of social engineering designed to limit social network growth has been proposed, the idea being to present young men with neutral and unbiased information about higher HIV infection rates among older men than younger men, the implication being that they should choose to associate only with other younger men.
The impact is the same, even if the intent is somewhat more benevolent. No matter how you dress it up in neutral language, the message that "older guys represent a sexual danger to you, young man, so avoid them" comes through loud and clear.

So, the invocation of social network theory, and it's strong metaphorical resemblance to the 'web of causation' probably has played a role in the development of such bizarre and counter-productive ideas for addressing the social contextual factors that influence HIV transmission.

Lace, Macrame, or Felt?
Perhaps we need a new metaphor to describe social networks. At the Chicago LGBTI Health Summit, Marshall (Feldman?) described the network of social relations in San Francisco as 'lace', its fragility due to the high turnover of people in this transitory town. This metaphor may be more useful for us public health types - why would you cut lace? If anything, wouldn't it be better to bolster the lace with new connections, tougher and stronger connections.

Perhaps the goal of health promotion would be to turn lace into macrame, the knitting craze that filled American houses with hanging plants in the 1970's. But there's something too vertical and hierarchical about macrame for my taste as a metaphorical substitution.
Someone suggested that felt, made by mashing fibers together, rather than weaving or knitting them, might be a good metaphor, it invokes the idea of the strands having multiple points of contact with one another, not fixed into a pre-arranged shape, and the tighter the felt, the more points of connection between the fibers, the more difficult it is to rip apart.

At any rate, using fabric as a metaphor pushes one to think about strengthening ties, not rending them apart.

Social networks as units of analysis
Another way to think about using social network theory is to design studies and interventions around the idea that social networks are discrete entities. This may be plausible when describing the strictly sexual links that have been used to trace STD transmission among heterosexuals, whose sexual networks tend to be dyadic, or only slightly more extensive than that. But the idea of discrete, separable social networks quickly falls apart when thinking about social ties other than strictly sexual ones, or even "purely" sexual networks in the vibrant sexual culture that gay men have fought so hard to create.
Despite this practical limitation, one could theoretically think about how to design a study using an individual's perceptions of their social network as the unit of analysis, and ask which types of social networks are more successful than others at help that individual avoid HIV, or avoid exposing others in the context of secondary prevention.
Doing this sort of research would imply that interventions should be designed to intervene in social networks that are identified as being dysfunctional. How to do that without simultaneously stigamtizing the very groups one is trying to assist seems difficult to me. In simpler terms, "Hi, we're here becuase we think your friends might let you down, so we want to help you make new friends" could be taken as very offensive to people who have a lot invested in their social networks, no matter how dysfunsctional social science research deems that style of network to be.

Broadening scope
So, perhaps the main problem isn't one of metaphor, but of scope. Rather than focus on the ties that bind individuals together within discrete social networks, a more fruitful way to think about the role of intentionally altering social contexts might be to go a bit broader, and engage the structural forces of gender hierarchy, material deprivation, and racial ideologies that work a broad social level. These forces certainly get reflected within social networks of friends and family, but their source, and the means for addressing them require a broader focus; on laws, policy, and public opinion. It requires engaging the total population, not just the relatively small population that is 'at risk' for whatever reasons.
With this broader focus, lobbying, grassroots organizing, school-based anti-bullying campaigns, and social marketing campaigns designed to address stigma become practical, efficient ways to think about intervening in the realm of social context to reduce HIV infection rates.

Throw out the tools if they aren't working
Don't get fooled by the work 'social' in social network theory. Social network theory may be a good way for infectious disease epidemiologists to understand disease spread through a time- and space-limited population (such as measles through the Faroe islands), but it's probably not a good guide when thinking about how to address the social contextual factors that influence HIV infection spread.

Get some new tools instead.

Hurricane Bill: Why I Touched You in Chicago

OK, so nobody asked me why I was going around giving shoulder massages in Chicago. At least I don't remember anyone asking why.
And that's part of the beauty of it. It's not about talking.

But in case you're curious, and want to waste valuable head space with an answer, here's why.

I need it.
I've got a bad back, and sitting in a chair all day just kills me. So I've gotta get up and walk around. Touching your shoulders gave me something to do.

I want it.
I enjoy touching people. I'm a bit of a touch top, to be honest. If you get anything out of it, hooray for you, but that's not what it's really about for me.

I need it.
For me, it's easy to feel misunderstood, and it's easy to be critical. I've got a lifetime of training in feeling misunderstood, and an education that stressed critical thinking to the nth degree.
So even in the midst of a bunch of passionate queers getting together, for the purpose of critiquing our own and others work in promoting health, being critical and feeling misunderstood (or un-heard) came quickly and easily to me.
That's not how I wanted to spend my time with y'all though, so in discussions with a few other critical and easily misunderstood people, I decided to take some responsibility for feeling that way, both to get myself out of the mire, and also to subtly shift dynamics that I was afraid might lead others into a similar state.

I decided to concentrate on touch.
Intimate touch.
Public touch.
Touch that is not spoken about, just experienced.
Touch that is not sexual, but could be flirtatious, and could have sexual overtones.
Touch that has no pretense of healing, but may nonetheless be healing.

In short, touch that is designed to get us out of our heads a bit, and into each others lives.

Being together without touch is isolating
Chairs in a room, aligned in rows, with talking heads at the front reading words off of Power Point slides is about the most isolating and alienating sort of group experience I can imagine, and yet, somehow that has become the norm for academic and professional meetings, even how classes are taught, and it takes a great deal of resistance for us to create other forums and formats for the sort of group experiences we want and need to share ideas and inspiration from one another.

My intention
So to break though that isolation, I hoped that by touching you, in public, it would create some sort of intimate experience. Not only between you and I, but between me and the room, and between you and the room. Most of all, I hoped it would liberate you to touch other people in the rooms, hallways, and other Summit spaces, public and private, and everywhere in between. And as I said above, a main motivation was to move me from a critical space to a communal space.

I did not ask if you wanted it. I intentionally asked only "May I?" if I asked at all. For many of you, "May I?" and a nod of assent were the first and only words we exchanged during the entire weekend. That's kind of wild, thinking back on it.
I understand and expect that for some people, my touch may have been somewhat less than welcome; perhaps because intimate touch of any sort implies sexual expectations; perhaps because intimate touch triggers a bit of a traumatic response; perhaps because inter-racial touch and inter-generational touch have incredibly complex sets of meanings, especially when done in public. And what the heck does it mean for a gay man to touch a lesbian intimately in public?
I accept that my method of seeking consent may have left some people feeling less than comfortable, and am happy to take responsibility for that. It was, after all, an intentional approach I took. And I took the risks of having a somewhat ambiguous (if intentional) approach to consent to serve what I felt a greater goal, to create a common experience that wasn't in our heads, that was in our bodies.
What would it have meant to do a more complex ritual around consent? Having been a victim of hate crime myself, I have struggled long and hard with what it means to continue to perceive myself as a victim. And I have concluded that it is really unhealthy for me to live with that status, that identity. If my consent procedure had encouraged a victimhood status in someone else, that would be contrary to my goals in creating a communal experience.
Had I touched only the people I knew, that would have been contrary to that goal. Had I sought a special level of consent from people of a different racial background from mine, from people considerably older or younger than me, that would in a sense have reinforced a bunch of stereotypes about racial and age related sexual objectification. Did I as a middle-aged White guy have a position in the room that 'allowed' me to act in a way that seemed to ignore these racial and age dynamics that another person in the room may not have been able to 'get away with'? You bet, and it pains me that that's the case. I sure don't have a fix for that one. But I hope you'll understand what my intention was, and why I tried to address chiefly the issue of intimate public touch as a matter of breaking down barriers and creating more of a communal environment where we were invested in one another.

So, how was it for you?

Chicago LGBTI Health Summit

So many things to possibly blog about. Any suggestions?


Lace, crochet, ribbons, and cross-stitching to describe social networks: mixing fabrics is banned in Leviticus, but is mixing metaphors allowed?

Social network interventions: Why inquiry into what makes a social network fuctional or not is a counter-productive question.

Observations on Scout's Law of Fake Queers, and how we've already gotten in trouble because of it.

Why Identifying 'Research Worth Reading' is So D
ang Difficult.

Hurricane Bill: Why I Was Touching Your Shoulders at the Summit.

Sunday, July 26, 2009

How NOT to Recruit Research Subjects

I went to a coffee hut tonight to work on a paper I'm writing, and while waiting for the bathroom, this ad caught my eye.

Powerful graphic, but where have I seen that before?

Try Birmingham, Alabama, 1963.

Please tell me it's unintentional. But how could it be? Is there any other setting where fire hoses get used for anything but putting out fires?

Addendum: There's an interesting back and forth on FaceBook about this ad here.

Thursday, July 16, 2009

Let Your Fingers Do the Walking

About ten years ago, I looked back through the San Francisco Yellow Pages, to look at the evolution of ads for the gay baths in relation to the emergence of the HIV epidemic.
I was surprised to find how far they went back - this ad from 1950 certainly is evocative!
Somehow, I don't think the fellow on the table has lumbago or neuritis on his mind.
More to come...

Friday, July 3, 2009

Walking the Dog

Found myself sitting in front of my computer doing not much of anything this morning, while the day turned beautiful outside.

So, I grabbed Tuna & we walked down to Civic Center to deposit checks (Yee haw!).
On the way back, we walked past the place we moved to a year ago August, the Fox Plaza tower, and Tuna started pulling towards the door.
So, we went in, walked through, and out the other side. On the other side, she sniffed out her dog walker David, and they had a grand old time sharing stories. A few steps later, we ran into Bonita's owner who was also thrilled to see Tuna. Then, a run around Alamo Square for kicks, and now I'm ready for a nap.

I wonder what it's like for her?

Picked up this cute little painting on the way - seemed thematically related to my work on air pollution. Bought it for $10 and a couple Oakland ferry passes, from this artist.