Over a year ago, I was asked to step into a role as facilitator of a group for poz black men.
The new director of the organization had surreptitiously changed the name of the group to "undetectable voices"! He had been challenged on this and kept pressing, thinking this name was his golden ticket to transforming programming at the agency. I had deep feelings about this, and disagreed with and talked with him about how problematic it was to organize a group around undetectable HIV. It is exclusionary, invalidating and with privilege that people are able to wear the banner of undetectable. It doesn't mean that they are necessarily somehow more health-literate, self-invested or have more to offer the conversation than someone who can't get HIV virally suppressed. It shuts people out. I don't know whether he got the message.
This moment and others got me to reflect on how these organizations that say they cherish poz communities are responsible for HIV-related stigma being present within their walls.
In the past because of hurt, black LGBTQ communities would frame the virus with shade to deal with the heavy blow. People would say kitty or sick and various other coded language for someone poz, mostly to say without saying or to devalue the person outed as poz. Some consider it a read to have HIV itself. The read is: Not actually talking about HIV and having grace for poz communities makes all the work to stifle the virus in our communities for naught. Those were decisions then, we can make new and different decisions today.
In non-profits, this happens as well. Having people rely on case management in this cyclical way isn't respecting or affirming poz communities. Seeing long-term survivors as a nuisance isn't respect, nor is believing that those individuals alone have the unequal responsibility to show their cards, without an effort to understand that disclosure isn't always accessible and that violence is perpetuated against poz communities when they do disclose, sometimes. It's a weapon you've just given others, and it is also part of your identity.
The argument about responsibility is always cloaked in public health clothing. Pretending that, for better outcomes, poz communities have a moral obligation to be the protector of others. Protecting them from you fails when intimacy is the human need. Everyone has responsibility.
The fueling of J. L. King's narrative about the DL HIV monster from his first appearance on Oprah's show has created this super-distorted idea about what is actually moving HIV. HIV-positive people aren't homogeneously trying to capture the flag of those who are negative.
Calling people out after death about how they may have died of HIV is troubling and perpetuates stigma. Disclosure should always be driven by a decision of the person without someone trying to police, threaten, blackmail or shame them into disclosure. You know what you can do if it troubles you that people still don't find safety in disclosing their status to you? Ask yourself: Have I made it safe for them to disclose; have I shown up for them; do I have trust within them? Ask yourself that first. You can't scratch your head at nondisclosure when in the same breath you say you wouldn't date, love or be intimate with someone poz. Hiding behind preference isn't going to work in 2016.
Respect the privacy of people's health information!