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HIV/AIDS Blog Central

How We Talk About HIV

By Terri Wilder, M.S.W.

December 1, 2007

Atlanta, GA
Time: 8:24 p.m.

Terri Wilder"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
Place: Georgia

E-mail sent to my cousins from me: Plan on a party to celebrate my senior citizenship on Saturday, October 6th.
(Read: Turning 40 years old and want to celebrate despite grief over this developmental stage.)

E-mail from my cousins to me: Will this be a kid-friendly event?
(Read: Can our daughter attend?)

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!
(Read: We are all getting old and it would be fun to have my friends and family celebrate/make fun of me getting old.)

E-mail from my cousins to me: Hmmm ... on second thought....
(Read: Hesitant comment in relation to being around old people, non-wild people, or gay people? Unclear.)

E-mail to my cousins from me: Oh stop. They won't try to flip her.
(Read: Reference to Ellen episode in which she comes out as a lesbian while making fun of the unrealistic belief that gay people try to "recruit" straight people into "gayness" in order to win kitchen appliances.)

E-mail from my cousins to me: Sorry, we don't put our daughter around gay men.
(Read: We believe that gay people are bad, diseased, and sinful people and will have a bad influence on our daughter.)

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:

  • well/sick
  • low t-cell/high t-cell
  • gay/straight
  • victim/innocent victim
  • male/female
  • black/white
  • undetectable/
    detectable
  • positive/negative
  • HIV/AIDS
  • AIDS victim/person living with AIDS
  • gay lifestyle/men who have sex with men
  • down low/straight man/gay man
  • vagina/penis
  • vagina/anus
  • penis/anus
  • monogamy/promiscuous
  • survive/thrive
  • death/life
  • acute/chronic
  • fragile/tough
  • hard/soft
  • love/hate
  • access/unavailable
  • adherent/non-compliant
  • general population/risk groups
  • cure/no cure
  • vaccine/no vaccine
  • time/no time
  • sex with a condom/risky sex
  • war against AIDS/apathy, etc.

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?

  • "I am positive." Read: I have HIV in my body or that "I am the virus."
  • "I have AIDS." Read: I am dying or I am at the clinical level that the medical providers refer to as AIDS. I have had an opportunistic infection and have tested antibody positive.
  • "I am adherent." Read: I have access to medicine: I have resources, I am privileged or I am lucky to have knowledge of programs that can provide my medicine, and I have a good case manager.

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?

  • "I am sick." Read: I label myself as diseased ... not well ... a patient.
  • "I am a man who has sex with men." Read: I have sex with men but I am not gay. Or I am gay, but I am unable to say the word gay. I am ashamed or politically correct by using the phrase "man who has sex with men?"
  • "I am on the cocktail." Read: I am taking medications ... or I don't know the name of my medications and am using the language of the media to describe the fact that I am taking pills.
  • "I am fighting the war against AIDS." ... Read: I have associated AIDS with fighting a war in which my t-cells are soldiers fighting off the enemy. I am doing everything I can do to stay healthy. I am staying alive by advocating for myself. I am a rebel stirring it up to stay alive. I believe consciously or unconsciously that someone or something will win/lose in this situation.

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.

To contact Terri, please e-mail twilder@thebody.com.

Stay tuned for monthly additions to this blog!

See Also
Terri Wilder Blog Entry #4: Coping With a Friend's Diagnosis -- and a Race-Blind Virus
Terri Wilder Blog Entry #3: Remembering a Great HIV Advocate
Terri Wilder Blog Entry #1: An HIV Fighter Tells Her Personal Story
What Does HIV/AIDS Stigma Look Like in Your Life?
More on Stigma and HIV/AIDS

Reader Comments:

Comment by: Robert (South Carolina) Wed., Mar. 25, 2009 at 4:13 pm EDT
A peculiarity around here about words & HIV is this: I went to several beginner mandatory meetings when I first started at an A.S.O., and a woman spoke, another client, introducing herself, thus, "I am HIV."

She meant "I have HIV," of course.

Some time later, I got this idea in my head I might have been "misdiagnosed" - I was not, but still, to clarify it, my doctor retested me, but his words to me were, "You are HIV, and I will prove it do you, and retest you."

My reaction was: "NO! *I* am NOT 'HIV'! I *HAVE* HIV! There is a world of difference!"

I cannot explain it, but this disturbs me a lot, this "I am HIV" versus "I have HIV" thing.

Yes, I have HIV, and it drastically affects my life. I would be lying if I said otherwise. But it does not define me as a person, who I am, what I can do, or my future.
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Comment by: sal Wed., Feb. 20, 2008 at 5:28 pm EST
What I gathered from reading this article is that how some of us should look at HIV/AIDS and as a positive man I totally agree with the writer however there are those who are still ignorent and dont really care if and who they hurt with whatever terminolgy they use, so I say to the postive person or should I say the HIV positive person to do whatever they have to do to get positive about being positive.
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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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Articles by Terri:

Are We Thinking About HIV and Older Adults?

Twenty-Seven Years of Women Living With HIV: Past, Present and Future (January 1, 2008)
To read PDF, click here

The Hidden Epidemic: White Women and HIV (September 2001)
From AIDS Survival Project

For the rest of Terri's articles, click here.


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The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.

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