Populations who dare not speak their names

Populations who dare not speak their names

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It’s time to stop extending the closet.

For decades, research on lesbian, gay, bisexual, transgender and intersex (LGBTI) people has faced serious challenges, most notably funding. The federal government has never provided more than a token level of dollars for research addressing the many persistent health concerns faced by LGBTI people like health-care access, HIV/AIDS, violence or mental health.

For example, in fiscal year 2014, the National Institutes of Health funded only two new non-HIV-related projects on transgender health. That’s compared to more than 25,000 awards the organization gave out that same year.

A recent memo sent around the CDC encouraged those who were seeking government funding to avoid using “transgender” — as well as “vulnerable” and “diversity.” If those words appeared in a proposal, the thought was that funding wouldn’t be likely.

On top of the excessive funding challenges that are already faced by those seeking to study health in the LGBTI community, the challenges mount even higher when the very language used in projects is policed.

But here’s the thing: This is nothing new. For decades, these populations have been actively hidden through code words imposed upon them by politicians — across both Republican and Democratic administrations. It wasn’t productive in the past, and it is worse now.

When the words “gay,” “lesbian,” “bisexual,” “transgender” or “intersex” were too threatening for government officials or taxpayers, researchers censured themselves using terms such as “men who have sex with men” and “women who have sex with women” when investigating gay men and lesbians. And as a group, LGBTI people have been included with other groups under the umbrella of “vulnerable” or “diverse” populations, making research in those areas more palatable.

For example, the first major program announcement from the NIH written to specifically address the health concerns of LGBTI people was released in 2001 and titled “Health Research with Diverse Populations.”

The reasons for these semantics have been many over my three-decade scientific career, but the consequences have always been the same: harmful.

For people that have often been driven into secrecy and privacy in their personal lives, the cloaking of research about them is more than ironic. The closet is not a healthy place for people or research. So, when government officials tell us that we cannot use words such as “vulnerable” and “diverse” — words are already just code for who these people really are and what is actually being studied — you’re just putting a closet around the closet.

Where does this stop? Are their concerns less important than any other American’s? How many closets will there be two years from now? Six? Ten?

Whatever administrations are in place in those timeframes might not even matter. I’ve seen this on both sides of the aisle.

In my first meeting with representatives of President Bill Clinton’s Secretary of Health and Human Services (HHS) in the 1990s, I was told before the meeting to not even say the word “transgender.” More than a decade later, when meeting with officials appointed under President Barack Obama, I got similar advice before an off-the-record meeting — because they would not participate in meetings about transgender people on the record.

I know that new words will just be created or selected to replace the ones that politicians and their ilk don’t want to hear. Lesbian, gay, bisexual, transgender and intersex people will simply rebrand themselves — or be rebranded by others.

But this is science. It’s our job to pursue what we don’t know, what we can’t see, and explain it. Euphemisms don’t fit into that. We shouldn’t obscure the LGBTI population that we study. It’s hurtful to them and hurtful to science.

It’s time our politicians realized that.

Randall Sell is an associate professor in Drexel University’s Dornsife School of Public Health.

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