Stigma related to HIV has a tremendously destructive impact on individuals, families, and even communities. It can prevent people from getting tested, seeking treatment, or disclosing their diagnosis to those most likely to provide support. Who Can You Tell? The International Conference on Stigma was created to address this problem and to identify ways in which health-related stigma can be reduced, if not eliminated.
Last month, a team from Health Stories Project had the opportunity to attend the conference, which is hosted by Howard University. We interviewed multiple conference attendees to hear about their experiences with HIV-related stigma and their valiant efforts to combat it.
We wanted to share some of their ideas:
1. Listen to stories with empathy.
“What we as advocates can really do to knock down the stigma for our clients is just remember how you were you know when you walked into the clinic room and you sat on that chair. You might have had a night or did something that you [regret]. Put yourself back into those shoes. Because, for me personally, I came from the bottom up. I did a lot of wild things, made a lot of mistakes, lost myself, and so I carry those experiences into every time I talk to a client.
So, you know, just [use] a down to earth approach. Listen to everything that they say, even the wildest things that they say. They are not there to be reprimanded, they are there to get help, they are there to get guidance and how you interact with them can potentially save their lives in ways that you don’t even know.”
-Arturo Hill, HIV tester and counselor at NovaSalud, Inc.
2. Start at home by speaking with your family and friends about HIV and stigma.
“I would start first at home in educating your individual family members, children, and friends about what stigma is as a way of undermining and attaching prejudice to someone that does not deserve it. I think that we should also take into consideration that HIV, in particular when it comes to stigma, has to become more normalized in that it is a disease and it does not deserve the bad rep that it gets. Things have changed a lot in the last thirty plus years around HIV. People can live almost a normal life in terms of longevity now that we have medications. We know how to control the virus and there is no need for the fears that we had on the very onset or beginning of the HIV epidemic.”
-Barbara Chin, Senior Program Manager at the AIDS Healthcare Foundation
3. Educate yourself and others.
“[People] need to educate themselves. I think that a lot of people are very ignorant about the condition. I think if people just educated themselves about everything then [it would] put a whole new light on this epidemic.”
-Brian Outlaw, Husband of someone living with HIV
“In order to eliminate some of the stigma I’d just like to say to educate yourself and [don’t] be afraid to educate the people in your surroundings, in your community, your family members, the people you choose, your doctor, other people that you socialize with. The more people you educate yourself, and the more you feel more comfortable with self-disclosing, it kind of eradicates stigma.”
-Charlene Cotton, HIV+ Educator and Advocate
4. Create more advocates, allies, and ambassadors.
“As an advocate, I feel that it’s very important that we do three things. The first thing is, create other advocates, so that we can educate, empower and bring awareness. And then inside of that we should also develop allies in the community as well as ambassadors. And if we do this effectively we can get information and education. Then we can stagger stigma”
-Marvin Anderson, Advocate and Founder of Stigmocracy
5. Have open and honest conversations.
“I feel that we have to have open and honest conversations about our health, about disease, about what’s going on. We have to take the time and opportunity to educate ourselves and make sure that we are fully aware of everything that is going with us in relation to our health. Otherwise we are just going around creating stories that may, or may not, be true. Then people believe those stories. I think that stigma is kind of like a rumor, you know, you hear a rumor and you know it spreads and by the time it gets to the second and third person there’s an added component to it. We just have to really ground ourselves [in education] to know what we are talking about”.
-Raymond Thomas, Advocate with the AIDS Healthcare Foundation
6. Share your story.
“I believe that just getting personal stories out there is definitely going to alleviate some of the stigma, fear, and ignorance that is associated with HIV and AIDS.”
-Tracey Dannemiller, HIV+ Educator