How We Talk About HIV
By Terri Wilder, M.S.W.
December 1, 2007
"It is well established that language, in the context of HIV, is not neutral." -- UNAIDS
"It is well established that language, in the context of e-mails, is not neutral." -- Terri Wilder
"The AIDS epidemic has produced a parallel epidemic of meaning -- an epidemic of signification. The AIDS epidemic is cultural and linguistic as well as biological and biomedical." -- Paula A. Treichler
Have you ever thought about how we come to believe what we believe or why some people think what they think? Let me give you an example; or, actually, let me share an e-mail exchange between me and one of my not-to-be-named cousins.
Date: August, 2007
E-mail sent to my cousins from me: Plan on a party to celebrate my senior citizenship on Saturday, October 6th.
E-mail from my cousins to me: Will this be a kid-friendly event?
E-mail to my cousins from me: She can come. My friends are too old to get wild ... me and a bunch of gay men... and my cousins ... a dream!
E-mail from my cousins to me: Hmmm ... on second thought....
E-mail to my cousins from me: Oh stop. They won't try to flip her.
E-mail from my cousins to me: Sorry, we don't put our daughter around gay men.
After reading this e-mail, I realize that I have just received a homophobic e-mail. I become angry, so angry that I begin to cry. My anger is constructed from the hurt, disappointment, disbelief and shock that I feel from this message -- the message that says "your friends are not good enough for our child to be around." The message that says "you hang out with people that we find unacceptable."The message that your friends are "unworthy." The message that says "we are better than your friends" and the message that says" we stand in judgment of who you are and the people you hang around."
What "we" believe is constructed by our upbringing, "culture," and the messages we receive from "society." My cousins obviously received the message that being gay is bad, sinful and unacceptable. But how, when, where and through what medium they received this message is just as important as the belief itself, for what we believe is constructed, we are not born with this knowledge. It must be transferred to us.
So, how did we come to know what we know about HIV? How was the knowledge of HIV constructed?
I will ask you to think back to the first time you heard about the disease we now refer to as AIDS. Did you first hear about it when it was called GRID or Gay-Related Immunodeficiency? Did you hear about it as a new gay plague? Was it mysterious and deadly? Did you feel compelled to join the "fight against AIDS" or to stay away from those who might "give it to you?" Did you read about it in the newspaper, hear about it on the TV or did someone tell you about it?
Even if you were not around in the early 1980s, the fact that the disease was first labeled as the "gay plague" played a role in how society views this disease ... even today ... people still believe that it is a gay disease and that they are not at risk because they are not gay.
The fact that an organization was created in New York (i.e., Gay Men's Health Crisis) ... and still exists to address this disease while including the word gay in the organizational title reinforces the message and belief that this was/is a "gay" disease and consequently plays a role in the construction of how society views this disease.
Furthermore, the language that has been used and associated with this disease continues to construct images and perceptions about the meaning of this disease. For this disease is not simply a disease, it has become a symbol of who is/is not recognized; a binary, if you will, of competing images.
For example, the following words can be found around, behind and in front of the language of HIV disease:
All of these words have meaning and construct images and meaning about HIV ... .about AIDS, about HIV disease.
If I tell you that I am "positive," that I have AIDS, that I have access to medications and that I am adherent, what images do you have about me? What meaning do these words create for you?
If I tell you that I am "sick," I am a man who has sex with men, that I am on the "cocktail" and that I am fighting the war against AIDS, what does that tell you?
Furthermore, If I tell you that the general population doesn't have to worry about this disease and that only certain "risk groups" need to worry about "it" what does that tell you? (i.e., "general population" Read: heterosexual; "risk groups" Read: everybody else -- especially gay men, IV drug users, etc.)
Additionally, does HIV and AIDS hold different meaning according to who you are? Does it mean something different depending on your race, gender, sexual orientation, class or religion?
This disease is about language and forces us to ask what meaning and attachment we place on the words that we use/choose when we are talking about "it" and writing about "it." What ideas does "it" reinforce about who has HIV, who doesn't have HIV, who gets treatment, who gets the ear of the government, who gets funding and who is counted?
Additionally, what meaning does our HIV-related language create around what is considered good/bad; appropriate/inappropriate; acceptable/unacceptable ... .. homophobic, sexist, them, us ... . you ... and me.
So, the next time you think this is just about HIV/AIDS, think about how we have all contributed to the symbolic meaning of a virus ... a disease ... an epidemic ... and the consequences of the words we choose when we are talking about something as "simple" as a "disease" identified in June of 1981.
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Working in the Frontlines of the HIV Pandemic Since 1989
Terri Wilder is a social worker who has worked in HIV for nearly two decades. She has written numerous articles about HIV, and has presented at HIV conferences around the United States. She is currently pursuing a doctoral degree in sociology at Georgia State University.
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July 6, 2009 - Eight Characteristics of Long-Term Survivors of HIV/AIDS: A Blog Entry by Terri Wilder, M.S.W.
March 15, 2009 - Thoughts About Women and Oral Sex After Visiting the NYC Sex Museum: A Blog Entry by Terri Wilder, M.S.W.
September 25, 2008 - The Death of an HIV/AIDS Organization: A Blog Entry by Terri Wilder, M.S.W.
July 27, 2008 - Standing My Ground With Latex: A Blog Entry by Terri Wilder, M.S.W.
June 12, 2008 - Where Is the Martin Luther King Jr. of HIV? A Blog Entry by Terri Wilder, M.S.W.
Articles by Terri:
Twenty-Seven Years of Women Living With HIV:
Past, Present and Future (January 1, 2008)
For the rest of Terri's articles, click here.
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