Interpretations of Stigma, Shame, and Self-Denial in an HIV Intervention Campaign

I’m sharing this story with you all because I’ve very proud of myself and I’m energized by this accomplishment. As you all know, I hold strong opinions and voice my thoughts on things without restriction. This has gotten me in trouble more than it has helped me, but for once, my radicalism proved its value and my voice was heard above all others. I challenged the Virginia Department of Health and my call for change was accepted at the highest levels. I’m pleased with the outcome of my activism as well as with myself for holding true to my radical approach and not softening my voice for the comfort or convenience of others. 

Here’s the story:

I saw a billboard for HIV prevention that I found to be extraordinarily offensive. 

Check it out:  

 

Created by Dept.’s of Health in Chesapeake, Virginia Beach, and Portsmouth, this ad. is a disease prevention campaign that targets individuals at-risk of HIV infection and encourages them to get tested and use prophylaxis. This may seem simple enough, but when I first experienced the ad, this is what I interpreted: Retro culture of the 80s is hot (cool, or acceptable), HIV is not (uncool or unacceptable)/ lets celebrate the nostalgia of the 80s without HIV/ HIV is bad/ people living with HIV are bad/ HIV ruined the ‘coolness’ of the 80s/ get tested and stay protected from HIV (because it’s not cool). Instead of communicating the severity of illness and risk of infection, this ad likens HIV to the negative (something uncool, out of style, shameful). This is what made me speak out.

This billboard perpetuates the tumultuous triangle (StigmaShameSelf-denial) by likening HIV to categories “uncool, unacceptable” and does little to educate the target community on the disease, risk for transmission, or infection. Effectively, it functions to spread stigma, encourage shame, and thus contribute to self-denialism, that is the root of risk for transmission.

Some context: Unlike influenzas, HIV is a social disease, that is primarily spread from one person to another through social exchange in one of the five (1:5) fluids that carry the virus. Be it sexual, through IV drug use, mother: children feeding, or childbirth, HIV is passed from host to host in the course of human interactive practices. You cannot sneeze and spread HIV, or catch it from a toilet seat, or from eating after someone; it only moves through these 5 vectors. That said, these primary modes of transmission are also highly developed cultural phenomena, with their own social norms and values attached to them, and interpretive mechanisms for moral political valuation. For influenzas, sneezing or coughing doesn’t inspire a campaign to end all those who sneeze or cough, as was the case for AIDS under Raegan. Brushing against another’s skin as a child with chicken pox doesn’t inspire an entire religious subaltern ideology to explain away and damn your existence, as is the case with HIV. Society doesn’t call those who drink more than 4 alcoholic drinks in a week “dirty junkies” or advocate for the removal of funding in support of programs to help in recovery, as is the case with HIV transmission through IV drug use. The moral political world surrounding this virus is unique and has no comparable historical morbidity. The myths and lies told about this virus are endless, the explanations for its devasting effects call on the highest levels of our cultural systems, likening the pandemic to the wrath of God, punishment for sin, homosexuality, and the like. We don’t do this with the flu, or chicken pox.

HIV is unique, so we must treat it as such when we are developing messaging aimed at communicating prevention strategies to high risk groups and be sure our intentions are being effectively received by those for whom the campaign is targeted. This billboard failed to meet this standard. It did not inspire others to think about their sexual health and consider HIV testing or other preventive strategies; instead, it made people think about how much they dislike HIV and disassociate from it. Dissociation is self-denialism, dislikeness is stigma, and shame is the subjective experience of all those living with the virus who read the advertisement and felt othered by its message.

This same message came across my Facebook newsfeed a few days later, as a targeted advertisement; and I also heard it on the radio. So, I decided to write a statement about my thoughts on the campaign and post it Facebook, whereby I linked my writing to the marketing departments from each of the agencies responsible for creating the ad, and to as many community leaders and colleagues of mine that I felt shared in my opinion. The next day, my post had spread across the networks of friends, classmates, professors, colleagues, and made its way from Norfolk to the capital and onto the desk of the Commissioner of Public Health himself.

I received several emails and calls from high level officers in the department but before I could respond to any of them, I was informed that the Commissioner had called a meeting with local leadership in the three cities responsible for the ad; and the result was a permanent change in the policies surrounding the approval of publicly funded prevention materials, including peer review from the Community Advisory Board and approval from the State marketing officer. The campaign was immediately discontinued only 2 days after my post, and all billboards, Facebook ads, radio commercials and the like were removed.

I won.

I shared this success with all those who helped spread the message and together, we celebrated a victory. Many people reached out to privately to thank me for what I did, not because they were proud of my examination of stigma in the messaging, but because they too felt the shame in the ad, and they too wanted to speak up and tell others how poorly it made them feel, but they couldn’t, because they feel this shame every day, they embody it, and it keeps them from opening up about their experience, their emotions, even their status as an individual living with HIV….the stigma, the sense of shame inspired in the ad, it all contributes to the daily dose of self-denialism that too many people embody as they navigate life with the virus. In this case, the tumultuous triangle (stigma, shame, self-denial) kept people from speaking out against a billboard; in other cases, it holds them back from telling another they tested positive for the virus. Can you see how miss messaging can contribute to HIV transmission? Sometimes it’s so simple as an emotion inspired by an image on a billboard that effectively becomes the root cause of transmission for the worlds most ubiquitous communicable disease.

This is reason I took my call to action seriously. I was humbled by the fact that my words would help create meaningful, lasting change.