By Nick Emard
On Thursday, October 16th (our Third Thursday Forum- ask us about them!) we continued with the BLC’s “End The Stigma. End HIV.” campaign by having a discussion panel addressing stigma in the lives of people living with HIV/AIDS. Our panel included a diverse group of individuals, each with their own experience and perspective on HIV-related stigma. Of our distinguished guests we had: Dr. Stephen Brady, Catrina Cooley, and our very own Ed Jacobson. Dr. Stephen Brady is a professor and psychiatrist at Boston University’s School of Medicine; he works specifically with the Mental Health Counseling & Behavioral Medicine Program. His area of research interest is HIV/AIDS risk and mental disorders. Catrina Cooley works for the Multicultural Aids Coalition (MAC) but has been involved with HIV/AIDS work and advocacy for over 16 years. Ed Jacobson, a member here at the BLC, was recently diagnosed with HIV and gave his perspectives on being HIV positive at the age of 76. As you can see, we collected a dynamic group who, through their own experiences and perspectives, spoke about stigma in today’s epidemic.
You may be wondering, wait, who are you? Why are you writing about this stigma panel? Well I’d be happy to tell you… (If you don’t care, please skip to the next paragraph). I’m a Medical Anthropology student at Boston University’s School of Medicine. I’m interning at the BLC because I will be doing my Master’s thesis on the HIV/AIDS stigma. Specifically, I plan to address the intersecting layers of stigma and how they construct identities with the HIV/AIDS communities. I’m working under the lovely and talented Morrigan Phillips and Caitlin O’Gallagher. Together we plan to address stigma through the BLC’s “End The Stigma. End HIV” campaign. Enough about me; lets move on to more important things.
Caitlin and I facilitated the panel, which mostly consisted of Caitlin doing all the work while I provided my beautiful looks and somewhat decent handwriting. I was the Vanna White to her Pat Sajak; together we spun the wheel of stigma and discrimination. We began the panel by addressing how the audience members define stigma and how it affects their daily lives. From there we had discussions with the panelists and fielded a question and answer session where members addressed the panelists with inquiries. To end, we looked at ways in which stigma can be alleviated from future generations. From our discussion the following topics emerged:
The New Face of the Epidemic
Over the years, the face of the HIV/AIDS epidemic has changed. People, nowadays, don’t see being HIV positive as a death sentence. However, HIV isn’t immediately detectable when you look at someone; you cannot see it, which causes people a lot of anxiety. Instead of overt discrimination, many people face the pervasive, insidious stigma that is often “behind closed doors”. This often manifests as stigma in dating and relationships, access to care and treatment, and interpersonal interactions. In addition to these areas, many HIV positive individuals face intersecting stigmas from other areas of their lives, whether from being gay, using drugs, or being an ethnic minority. These identities also intersect and combine (ie. gay male who uses drugs) which creates multiple layers of stigma and discrimination. Navigating these layers can be stressful and emotionally draining.
Disclosure and Relationships
Online Dating– What do you gotta do to get some action? Who do you gotta do to get some action? How can you get some action? As we all know, just because you have HIV doesn’t mean sex is off the table. Many people still want to have active sex lives and many times online dating is a way to facilitate that. What happens when you actually meet someone? Do you disclose and see what they say? Do you provide your status up front? Do you wait to meet the person and see how things go? All are valid questions and each depends on the situation and the person. However, in todays Grindr, Tinder, Craigslist, or whatever you employ to find a date, there is a need to be “DDF” (Disease and Drug Free) “UB 2” (you be too). For someone who has HIV that just isn’t an option. This stigma of “UB 2” often forces people to either 1. not disclose or 2. be further stigmatized. In combating stigma, addressing these situations and finding out ways to work around them may be beneficial.
Relationships– Who cares about dating? You’re done, you want to live your life, forget the dating world (for the time being). You want to spend time with your family and friends. However, many times people are often unaware of what having HIV means, what causes transmission, and how to act around someone with HIV. Discussion around what it means to be undetectable and the stigma that family members and friends often emit can really affect someone with HIV. It’s important to address these areas, to have discussions with your family, and educate people on what living with HIV actually means for your relationships.
Yes, HIV changes someone’s life. However, it does not need to define them. Many people expressed the need to go on living their lives, that they were not just someone with HIV. They are fathers, brothers, friends, sisters, wives, husbands, partners, PEOPLE. In order to understand stigma, these identities need to be recognized and emphasised. Agencies like the BLC allow an outlet for people. As Catrina Cooley says, “Stigma is torn apart because you can go to a place where everyone knows your name.” (Cheers!) However, taking this and adapting it into ‘real world’ setting can be challenging and frustrating.
The panel ended in looking at ways to prevent stigma for future generations. In doing so, there was an emphasis to “meet people where they are”. This can be taken in two ways. One, meet people where they are physically, go to their locations: bars, grocery stores, college campuses. This way those working in the HIV community can help get people tested, distribute condoms, and advocate. Second, meet people where they are mentally and emotionally. Facilitate models for people to help disclose, navigate relationships, help people create discussion with partners and families about what it is like to live with HIV and how they can move from there.
As you can see, the conversation was robust. Stigma is something that has been apart of the HIV/AIDs epidemic since its origins, but it doesn’t have to remain that way. As addressed at the national AIDS conference, ending stigma may be one of the quickest ways to end the epidemic.
This stigma panel is just one of many discussions that will be ongoing at the BLC regarding HIV-related stigma. Please join us on the Third Thursday of every month to talk more about stigma and many other public health, advocacy, and policy issues. Upcoming topics include HPV and HIV, HIV and Nutrition, and Understanding Your CORI Rights. We look forward to seeing you at the BLC!