What Does HIV Stigma Look Like in Your Community?

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Stigma has many faces and many names. When we talk about HIV stigma, are we all talking about the same thing? To find out what stigma means in different places and spaces in the U.S., TheBody.com asked people working in HIV to comment on what stigma looks like in their community.

Mondo Guerra

Project I Design, Denver, Colorado

I don't like to use that word, stigma. Because I feel like it's an emotional attachment. And I feel like that has been attached to HIV for such a long time. We continue to talk about it.

Yes, it is very much on the surface. But I feel like that's a very negative emotion. We [need to] find a way to talk about it in a more positive way.

People are always going to have assumptions and ideas about how you're living your life, or how you contracted X, Y, Z, whatever it is -- and it doesn't even have to be HIV -- it's always going to be there. But us, as an HIV community, how do we approach the idea of the S word through a more positive approach?

Alison Kliegman

Housing Works, New York, New York

In the community I work in, there's still stigma around so many other things -- around homelessness and substance use and having mental health issues. They're all intersecting and they're all related.

I think there's so many forms of stigma, especially where I work, that our clients face. We're located in a pretty wealthy area of New York City, but our clients don't necessarily live in our community, but they spend a lot of time coming to our clinic and to our program. The safe space they have within our doors is not always the same experience they have out on the streets of New York City.

Ricardo Jimenez

VIDA SIDA, Chicago, Illinois

In Chicago, Illinois, we were one of the first agencies in the U.S. -- a Latino agency -- to confront the issue of HIV. When it first started out, in 1980s, when we look at the Puerto Rican community in Chicago, we were having closed caskets, private funerals, unannounced. And that's very rare for the Latino community.

I think, today, because of the education we have done in Chicago and to deal with the theme of sexuality -- that sexual expression is a natural expression not to be judged -- people are much more accepting of HIV, but there's still the stereotypes and the stigma of HIV. People still have that old stigma that we still have to deal with.

I don't think that we're at a point right now where we can say that everything is OK. We still have a lot of work to do in the Latino community in order for us to deal with our sexuality and to deal with the whole thing of HIV and to know that people who are living with HIV are also human and should be treated like that.

Tez Anderson

Let's Kick ASS, San Francisco, California

It has many different versions, stigma. In my community, it looks like people not wanting to talk about their HIV status, and I think that contributes to stigma.

I think that being visible is one way to overcome stigma. I understand that everybody can't do it, but for every time you don't say your status, you're contributing to the stigma.

Jennifer Awa

APIAHF, San Francisco, California

HIV stigma looks like we're not represented. I'm native Hawaiian and often a lot of our agencies are not funding or even shedding light on native Hawaiians.

There's an epidemic on our islands and we need to put more attention to that.

Stephen Lucin

HIV Equal, Norwalk, Connecticut

I live in Los Angeles right now; I'm really close to West Hollywood.

HIV stigma looks like fear. And I think that's the case anywhere.

When you're out and someone goes, "Oh, don't talk to him, because he's HIV positive," they've already shut down communication to someone who could potentially be a good friend or just any positive force in your life. So, for some reason, it's just fear.

Wayne Smith

Samaritan Ministry, Knoxville, Tennessee

We're in Knoxville, Tennessee. The stigma there is pretty big, especially in the African-American community around Knoxville, but I think it's better than it used to be.

I think people know more about HIV in general, so while the stigma might still be high about people's judgment about how people got infected, I don't think people fear becoming infected by being around people who have HIV like they used to. So that's a step in the right direction.

Robbyn Kistler

Greater Than AIDS, Brooklyn, New York

Silence -- people aren't talking. We really want to open up the conversation.