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VIEWS Words have consequences
by Robert Garofalo
2018-01-03

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Words matter in science—and in politics. We recently heard deeply troubling stories about the possible censorship of words at the Centers for Disease Control and Prevention ( CDC ). For many of us in the HIV/AIDS community, this is not the first time words have been used to marginalize and divide us. In 2003, I was a new faculty member at Northwestern University Feinberg School of Medicine and Ann & Robert H. Lurie Children's Hospital of Chicago ( then Children's Memorial Hospital ). I had just submitted my first grant application to the National Institutes of Health ( NIH ) to study the health risk behaviors and HIV prevention needs of LGBT youth, specifically young gay men. At that time, very few people were doing NIH-funded work in this area.

I recall sitting at my desk when the phone rang. It was an NIH Program Officer. "I am calling to help you," they said, but refused to identify themselves. "If you want to get your grant funded you will remove the words 'LGBT' and 'gay,' and replace them with something less controversial." When I asked why, they hung up.

I followed the anonymous voice's recommendation and replaced the words with the term, "vulnerable/" NIH approved the grant, and my career and my grant ( Project Q ) moved forward. To this day I have no idea who called me, but I think back to how courageous it was to make that call. I owe that person a great deal of thanks for their courage, even though they remained anonymous.

Soon afterward, in April of 2003, an article in the New York Times shined a light on censorship in NIH grant applications. The article discussed how scientists were being advised to avoid certain politically "controversial" or "sensitive" terms. One researcher had been told his application needed to be "cleansed" of such words as "gay" and "transgender" if he wanted to win approval. I knew I was not alone.

And let's not forget the early years of the AIDS epidemic, when the Reagan administration was virtually silent for much of the 1980s. The President himself refusing to even say the word "AIDS" and Republican congressmen's demonizing of words resulted in the federal government failing to respond to the greatest public health crisis of our time.

So when I heard that the Washington Post reported on possible censorship—this time at the CDC—it was triggering. This time, though, the censored words included "transgender," "fetus," "evidence-based," "science-based," "diversity,"—and yes, "vulnerable." It brought me back to that moment in 2003. Except this time, it is the words themselves that warn of a bigger story—of a bigger problem. For in 2017, it is not simply a cultural war on HIV/AIDS or on those of us who are LGBT, but an assault on the entire scientific community and the scientific process.

Those were scary times. While I had no voice or power back then, I do now. Although it remains unclear to what extent the censorship story is true or widespread, we will NOT go back to being silenced. Words shape policy, which affect all of us. We will NOT go back to being silenced and forgotten. Whether in the 1980s, in 2003, or today, we must be willing to fight back for all those who are "vulnerable" and against those who would use words to justify their actions and to deny who we are.

Robert Garofalo, MD, MPH, is a noted doctor and researcher specializing in HIV medicine and the care of gender non-conforming children and transgender adolescents.

He is the editor-in-chief of the academic journal Transgender Health. Garofalo is also vice chair of the board of TPAN, a community-based HIV/AIDS service organization in Chicago. These are not the opinions of Northwestern University Feinberg School of Medicine or Ann & Robert H. Lurie Children's Hospital of Chicago.


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