November 15, 2010
Stigma: It comes in many forms and can have a profound effect on people's relationships, their careers, their health, their lives. In fact, because of the ways it creeps into and clouds judgment on other aspects of the epidemic, many who are living with HIV/AIDS and/or working in the field believe that stigma is the greatest barrier to fighting HIV/AIDS. So how do we to eliminate it -- within ourselves, in our communities and on a global level? We asked members of the worldwide HIV/AIDS community to offer their ideas.
Josephine Y. M. Kong, Hong Kong AIDS Foundation, Hong Kong
I think that a fundamental message should be sent that everybody -- no matter if they have HIV or not -- has basic, equal human rights. Even if you have the virus, you still enjoy the rights. It's just basic human right to enjoy public health, to enjoy not being discriminated against because of their medical status. I think this is important.
Everybody can use the excuse oflimited resources, or whatever things, to expel you from public health, or from social service. So I think the advocacy for human rights is very fundamental in fighting against the stigma.
Patricia Shelton, Peer Educator and Consultant, Bronx, N.Y.; Diagnosed in 1991
Number one: education. Families need to be educated. The schools need to have education, and also churches. Our community needs to educate each other, like we did when I was growing up in the '60s and '70s. But it starts from home first, school second, and church third.
Allen Kwabena Frimpong, Harm Reduction Coalition, Newark, N.J.
To fight HIV stigma? You know, I think people get into this debate. I've heard it since I've been in this movement, for about five years now; and it's always about individuals versus a community-level response. I feel like you need both. With each individual, there is a larger community that they have to deal with as a person. So you need to be able to deal with things on the community level, where communities can be empowered and have self-efficacy through the networks that they have built.
We talk about these social networks, and how that contributes to the spread of HIV. Those very same social networks can be transformed into ways in which we can use protective tactics to stop the epidemic. There are ways in which we have to learn how to deal with each other differently. It really requires practice. I think we've been conditioned as communities to deal with each other in ways that are inherently disrespectful, dishonest. There are ways that we deal with our own families that we wouldn't approve of with others; and even within our own families there are dysfunctions that we have to deal with, right?Read More >>
That's going to be a long process because we're talking about stigma and fear that's reinforced by the same oppression that we face in these communities that have these high rates of HIV. So it's really, again, going to take courage. It's going to take struggle. Because some people are very much invested in reinforcing that same stigma. It's also attached to people of different sexual orientations; it's attached to women, men; you know, it's attached to all of us, in some different shape or way. It's also attached to people who are living with HIV. We find ways to oppress each other, and we have to break that cycle. How do we get to a place where we're building community, where we're reducing the harm that we do to one another? That's how I think we can stop HIV.
It sounds abstract and big. But I think that once we get down to it, and I think once we're able to have conversations and strategy, we can find some practical solutions and ways to do that.
I think that they're out there, and there are probably stories that we can pull from. It's just finding coordinated efforts to make that more widespread. So, yeah.
Yvette Ogletree, Kemet Coalition, San Diego, Calif.; Diagnosed in 2003
I think the best way to fight HIV stigma is for more people who are HIV positive, their loved ones, and the affected community to put their faces out there and start talking about HIV; talking about sex; and talking about the things that cause HIV and how we can prevent it in our communities.
"Buprenorphine Babe," International AIDS Conference, Vienna, Austria
I think you should start with telling people more about HIV from the beginning of school, so they grow up with knowing about it.
I think the best way to fight HIV stigma is through honesty and the truth, along with being real -- which really boils down to education. I do believe the more that people are educated about HIV, the less stigma there is. Once people are aware and they know what they are scared of, or fearful of, you know, they open their hearts.
Chivuli Ukwimi, International Gay and Lesbian Human Rights Commission, Cape Town, South Africa
How best should we fight stigma and discrimination? I think, reach one, teach one. Because when people are in a group, they tend to have this mob-psychology group thingy.
Even when I was working in Zambia, I was openly gay in Zambia. In my neighborhood, in my place of work, in the clubs that I went to, I used that. I gave people the time and opportunity to speak to me and to ask me even the most offending questions, because I realized people were ignorant. They just didn't have the information. I mean, homophobia, or any fear, it's just an irrational fear. People lack knowledge. People lack information.Read More >>
Just like a few years back, people actually believed if you touched somebody with HIV, you'd get HIV. They wouldn't even sit next to somebody who had HIV. One of my friends went through a very bad experience in Uganda where, because her parents died of HIV, she was almost like quarantined. When she went back to school, none of the kids could sit near here.
People do need the information. Especially for my LGBT brothers, I think: I know some questions are offending. Sometimes you just get really mad at people's ignorance. But I think if you take the time to really talk to a person, one block at a time we'll end up building a whole entire building.
And I think I've done it in Zambia. Some of the greatest friends and supporters that I have now are people that threatened to kill me before. And now they're very, very, very good friends.
One time there was a guy, and one of my friends asked him, "Why is it that you hate gay people so much? What is your issue?" And in confidence, he told him, "You know what? I think my greatest fear is, what if I meet a gay man and I like him? I'm a married man. I have kids. And what if I meet a gay man and I like him? What does that spell out for me?"
So I think, for me, reach one, teach one is a very, very good strategy. Because when people are in a room together, they say all kinds of things. But when you have a one-on-one session with somebody, I think it really, really works out.
Yolonda Reed, Broward House, Fort Lauderdale, Fla.; Diagnosed in 1989
The best way to fight HIV stigma is education. Period. That's it.
Abraham Calleros, Milwaukee, Wisc.; Diagnosed in 1986
Be open. Be truthful. Stop hiding. It took me a little while, but I decided if I don't do it now, how am I going to help other people to go through the same process?
Cyndee Clay, HIPS (Helping Individual Prostitutes Survive), Washington, D.C.
I think the best way to fight HIV stigma is to make sure that you're involving the communities that are most affected by that stigma, in the forefront of putting together a response to stigma. So you need to do broad education with the general community; but that education needs to be led by the communities that are most affected.
Nikki Mawanda, Transgenders, Intersex and Transsexual Uganda, Kampala, Uganda
I think that, for us to really fight stigma, I think that we should try as much as we can to work around a human rights framework, or try as much as we can to adopt the international and local human rights instruments that we have in our different countries, which promote humanity and coexistence.
For us, in Africa, we have what we call Ubuntu. Ubuntu . . . it's like humanity. As humans, you know, we have this brother and sister; it doesn't matter whether you're HIV positive or you're not HIV positive. But the fact that you're a human being and you have red blood -- that should be really good enough. We shouldn't really look for what you do; where do you go; where do you sleep; what do you do in bed; or something. Because we are too different. We are very diverse. We won't find a uniform human being anywhere in this world.
That's why we have different hearts. That's why some of us are white and others are black. So we just find that uniform thing that is us, being human beings. And that's the best way to fight discrimination; and also try as much as we can to work around the human rights framework.
David Bond, Project Awareness, Las Vegas, Nevada
I think one of the best ways to fight AIDS stigma is just making it public information, and letting people know that HIV exists, and letting people know that they have it, rather than being afraid of sharing that information. Because it's so frequent nowadays that it should be something that is expressed within families so that everybody knows just how connected you are to HIV. It's not disconnected anymore. It's just so very much in our society, to the point where you don't have to look that far for it.
Christopher Ervin, Aniz, Inc., Atlanta, Ga.
There are a few ways to fight HIV stigma -- one directly related to HIV stigma is to stop emphasizing the different populations, i.e., all HIV and MSMs, or men having sex with men; or HIV and drug users; or HIV and poor black women. Let's just say, "HIV and people." And so that would help people understand that anyone can get HIV.
And also, let's eliminate the stigmas related to being a person of color, being a person of different gender identification. Eliminate the stigmas of being an addict. Eliminate the stigmas of having mental health diagnoses. Eliminate stigmas surrounding people's sexual practices. All this will help end the stigma around HIV.
Ian Hodgson, European HIV Nursing Network, United Kingdom
Well, two things. Firstly, education, information, and making sure that people know how HIV spreads, because that's one of the causes of stigma. The second way is to empower people living with HIV to deal with stigma, in the sense that we'll never really get rid of stigma. So if we can help people living with HIV to be more confident about themselves, and to stop stigmatizing themselves, I think that will have a good impact against stigma.
Joe Hammoud, Youth Coalition, Beirut, Lebanon
To fight HIV stigma: Basically, comprehensive sexuality education and comprehensive sex education -- that's very good to start with, especially starting from a young age. Because people will start growing with the fact of knowing what HIV is before judging it -- and learning that, for many people who are infected, it's not the end of their life. And they're not actually the enemy. They're not the ones that we should be fighting.
So I think if we learn that from an early age, we can overcome a lot of stigma and a lot of misconceptions and judgments on each other, and especially if sex education became universal -- everyone has the right to information, and to access comprehensive knowledge, nonjudgmental knowledge.
Liam Osbourne, World AIDS Campaign, Leiden, The Netherlands
For me the best way to fight stigma is just having a lot of positive people out, open, and just being a positive face to HIV.
Devin T. Robinson X, National AIDS Awareness Poets
One of the best ways, and most effective, is consistent education of anti-stigmas. When you consistently tell people that something is not accurate, that you just can't look at somebody and tell that they're HIV positive, or that people that have this particular sore or whatnot are HIV positive; if you consistently put that information out there in all avenues possible, it becomes reality.
What we feel, in many cases, is that we've lost the sting with the media. So we're not out there as much as we used to be. So a lot of the things that are facts have been mixed, because we're not out there telling people, "Hey, this is wrong." So I believe if we have consistent messages that are always being pushed out to the media, and to the masses, then we'll be able to effectively defeat the stigma.
Benoit Matsha-Carpentier, International Federation of Red Cross and Red Crescent Societies, France
You have to have global policies, and you also have to have community work. Because you don't have two same countries. Every country is different. Every region in a country is different. So if you don't work with the community, then you can't touch people.
What do you think would be the best way to eliminate HIV stigma within the community that you know of, that you're familiar with?
Education. Yeah. I mean, education is the base of everything. When you have educated people, then they understand what you are talking about and they are more able to react, to take acts and to change mentalities.
Michael Rivera, Latino Community Services, Hartford, Conn.
The best way to fight HIV stigma: I've been doing this for about 21 years and what I have come to realize is, there's really no such thing as HIV stigma, as strange as that may sound. It's really stigma towards people, toward ideas and beliefs about people, and types of people. HIV became associated with those people. It also adopted the stigma that those people have.
So when HIV was a gay thing, then it took with it the gay stigma. When it became a black thing, an intravenous drug user thing, and so forth -- an African thing, a Haitian thing, which was one of the very first ones -- then it adopted and incorporated into all of those stigmas. So there is no HIV stigma, per se; what there is are a bunch of stigmas about different people rolled up into one.Read More >>
So what do you think is the best way to stop stigma, period, then?
Stop ignorance. You know? You've just got to educate people and expose them to people. And when you realize that we're all people, we're all God's children, we're all precious beings, then you start to deal with people on that level. Realize that, whether you agree with someone's behavior or not, the more important thing is to love that person. You may judge a behavior, but that behavior, you can separate it from the person, and say, "OK, this is a person just like me. Let me look at myself first before I start to judge what this or that person is doing."
Patria Alguila, Miracle of Love, Orlando, Fla.
Being transparent. Talking about HIV within the family, starting from the youngest to the oldest.
I think it's just word of mouth and spreading the news, you know? Getting together with your friends and then expanding -- social networks, different conferences. But I think it works better when you work in the communities that you're in. So if you get the community involved and you teach them and educate them about HIV, it's more effective.
Sherri Smith, Ebony Sisters Campaigning for AIDS Prevention Education (ESCAPE), Columbus, Ohio
I think it's going to have to be like the Cancer Society. We have to kind of follow their model. And that is, trying to get everybody educated, and get everybody involved. They try and get everybody involved. And they have the best media coverage! Marketing! We really have to do that.
They all have pulled together, regardless of their differences, and they come with one message. You know, it's not like, "We're the black people over here"; or, "We're the white people over here"; or, "We're the breast cancer people over here"; or, "We're about colon cancer." They say, "It's cancer." I think that's what we have to do in this field. It's HIV, regardless of all the other things. It's still HIV; it's still AIDS.
Winston Clark, The Gathering Center, Orlando, Fla.
I think parents should really sit down and talk to their children about HIV. I've been living my life drug free and alcohol free, because my parents have always driven that -- never to do drugs or alcohol. And I'm still drug-free, and alcohol-free. I think parents should get involved with their kids.