Phill Wilson, Black AIDS Institute, Los Angeles; Diagnosed in 1985
I'm really lucky, in many ways, in that I have a family, and I have the love and support of my family and friends. And they have been supportive from the very, very beginning. I have access to health care, and what have you. From my lens, HIV stigma looks like the calls that we get at the Black AIDS Institute, you know, in the day and the night. It's the calls we get from young people who just found out that they're HIV positive. And they either didn't know how to protect themselves, or they didn't think their lives were worth protecting.
They're often more afraid of the stigma than they are of the disease. It's the calls we get from mothers who are still reeling from the grief and the guilt of having lost a child to HIV, who they discarded -- who they put out, for various reasons. So that's what stigma looks like in my world. It's the fact that people still don't have the information that they need, and are still suffering from misinformation and misconception about HIV because the stigma prevents them from getting information that's readily available.
Elena Thomas Faulkner, Denver, Colo.
HIV stigma in my life looks like just general ignorance -- from family members, mostly. There's not a direct HIV impact in our family, so what I'm confronted with is family members who are ignorant about sexuality, generally, and really make all kinds of false assumptions around what HIV means, and what it means to be gay, or to be a community that's impacted by HIV. Frankly, we try to avoid those topics. The reality for me is, I have young kids. When they're exposed to those kinds of attitudes from family members, I feel like I have to combat them. And so I guess what it means for me is just stepping up and starting to talk about it, and offering a different perspective.
Henry Ocampo, HIV/AIDS Capacity Building Specialist, Fremont, Calif.; Diagnosed in 1995
HIV stigma for me means learning how to accept HIV, within myself first, before allowing other people to accept me in their lives. First I had to learn how to live with it on a daily basis, and trust that other people would be accepting of me for having it. I think stigma within myself was the biggest hurdle to begin with. After that, once I kind of figured that out for myself, then it was easier to allow other people in.
Ernesto Dominguez, Cascade AIDS Project, Portland, Ore.
HIV stigma in my life looks similar to what it looks like all across the country -- that folks are just so afraid to talk about their bodies and sex, in general. How can you talk about things like HIV and STDs if you're not even willing to say the word "penis" or "vagina"? It can be pretty magical and powerful to just be able to say, like, "My penis feels good," or, "My vagina is healthy." We don't say that very often, and I think we need to.
Michael Everett, Harm Reduction Coalition, New York City
HIV stigma has shown up a couple of ways in my life. Some of the more discreet ways have been amongst either friends or people who I've heard casually speaking on the bus. They said they would never date anybody who has HIV, or maybe they used another word for HIV. I think that it communicates a clear message that there's something to fear there, and that people are worth fearing, as well.
When I think about my own testing history: I did outreach as a teenager, but at the time I didn't want to go to a doctor's office to get tested. I didn't want to go to a community-based organization to get tested, because I was afraid that if the people there knew that the person who was giving the message had contracted HIV then it would mean the worst for me. It was definitely a shame-on-me kind of moment. So I remember sneaking to do my own HIV test, and having to do that alone until I could figure out how to get some support.
Center for Prevention and Wellness, Salish Kootenai College, Pablo, MontanaAlana Bahe,
When I got into this job and learned a lot more about what HIV was, and how you got it, I started talking to my friends. They were a little put off about it, because it's something that scares people. The fact that they're scared is just because they really don't know what it's about. So it was fun taking that opportunity to kind of capitalize on what I learned, and giving the information back to some people that probably needed it, in certain cases.
Paul, NYC Department of Health and Mental Hygiene, Condoms and Materials Unit; Brooklyn, N.Y. / Barbados
Right now, HIV stigma to me, personally, looks like a disappearing act. Growing up in the Islands, from a religious background, it was always considered a homosexual disease that was put there because God wanted them to be dead. I grew up with that belief. When I came to this country, and I started working in a methadone maintenance program, I still had that kind of belief. I used to be a little standoffish towards people living with HIV.
Unbeknownst to me, one of my coworkers, who ended up being one of my best friends at the time, was infected with the disease. He used to come by my house; me and him used to chill and drink, hang out. And when he started getting sick was when he finally told me. That's when I realized the disease has nothing to do with a person, within themselves; it's just a disease. So I had to change a lot of my thinking from how I was taught, as a young person, growing up. For me, the stigma has changed a lot. I'm very open-minded. I accept people exactly for who they are, and for what they are. It is a disease that's out there, and if people can protect themselves -- hence I work in the Condom Materials Unit -- we can get a handle on this disease.
Asian and Pacific Islander American Health Forum, San Francisco, Calif.Venessa Laurel,
Obviously I don't experience stigma the way a lot of other people do, because I'm not HIV positive. But I see what kinds of effects it has on people. Even within the Asian and Pacific Islander community, we don't necessarily talk a lot about these issues -- even in my own family. Something as simple as safe sex: It doesn't really happen.
I actually emailed my family members, when I first got into this field, and I said, "Go get tested." No response. Silence. I actually had that feeling of being ostracized. I was, like, "What is going on? What are they thinking? Am I going to be able to talk to these people again?" They talked to me, but never about what I said. So it's been very difficult just trying to break that barrier, even within my own family. Because I'm a firm believer of, it starts in the family; it starts in the community; it starts with your circle of friends. And then you branch out.
Arick Buckles, Illinois Alliance for Sound AIDS Policy, Chicago, Ill.
HIV stigma is huge. HIV stigma looks like death, looks like dying. It's a huge barrier to individuals receiving treatment and care. Personally, I've had friends who neglect treatment and care. And they actually die as a result of them not wanting to address their HIV status, and receive treatment and care for HIV.
Susan Harrison-Hicks, Registered Nurse, Quad Cities, Ill.
I live with someone with HIV. What stigma looks like to me in my life is absolute fear. It feels like hiding something from the rest of the world, not being able to share a piece of your life and who you are with even people as close as family at times. It causes a lot of personal difficulties in a lot of different ways.
Brian Robert, AIDS.gov, Fairfax, Va.
Since I'm pretty exclusively working in the Web side of HIV, stigma for us is getting information out there to everyone without alienating anyone. That's been kind of a struggle. The 12 Cities Project is one that's been a struggle for us, just trying to get the information out there that people need without ruffling too many feathers. That's been our biggest hurdle, as far as stigma.
AIDS Action in Mississippi, Jackson, Miss.; Diagnosed in 1988Luke Versher,
In my life? I have seen people die from stigma, actually, because they are ashamed to take their medication, or have their medication be seen by their family. I've seen people have to eat off paper plates and forks, because their family is so fearful. The lack of education is what fuels stigma, to me, in the South.
Marguerite Thorp, Student Global AIDS Campaign, Boston, Mass.
Well, a lot of the work that I've done on HIV has been global. And so when I come back and talk to people about that work, there's a lot of conceptions about AIDS being out there, and somewhere else; and that you can go visit a place, but you can come home, and that those are separate worlds. So I think a lot of the stigma that I've witnessed has been sort of this imaginary concept that AIDS only affects people out there, and it's not within our own communities.
Scott Schoettes, Chicago, Ill.; Diagnosed in 1999
Because I work within the movement, and I work for an LGBT civil rights organization, I think it maybe looks different in my life, where I don't worry about it in some of the same ways that other people do, in terms of employers, etc. But the place that I see that HIV stigma showing up in my life is really in my social life, in my dating life -- and oftentimes perpetuated by other people within the gay community. People talk about, they want to be with someone who is DDF, right? "Disease- and drug-free." There are a lot of misconceptions about how easily HIV is spread. There's a lot of stigma around engaging in any kind of sexual encounters with people if you're HIV positive.
Ronnie Grace, Community Health Worker, Milwaukee, Wisc.; Diagnosed in 1987
Stigma looks terrible. Yeah. It looks bad. It looks bad. It looks bad.
AIDS Action Coalition, Huntsville, Ala.Mary Elizabeth Marr,
Even though I'm not positive, I see stigma every day, even when I go in to speak to groups. Sometimes people don't want to even speak to you about the disease.
Mondo Guerra, Project Runway Season 8, Denver, Colo.; Diagnosed in 2001
Stigma for me is feeling uncomfortable to walk into a clinic, and assuming that everybody in the room is HIV positive, and vice versa -- like me, sitting there and having somebody come in and assume that I might be HIV positive. I mean, I am; but that's what stigma is.
Dr. Monique Howard, New Jersey Women and AIDS Network, Trenton, N.J.
As a service provider, stigma looks like the prevention of information from moving forward throughout my network -- whether my network is professional or personal. When I send out information, invitations, updates on HIV, they go no further than the person that I send it to, simply because of the stigma that surrounds HIV. And so it's other people's perception of receiving the information, and then passing it on. So it's an absolute roadblock for educating other service providers, educating people in my network -- about HIV, about the programming, about updates, about information