In The Beast of Belly: Doing HIV/AIDS Work In The System

The non-profit industrial complex is real. I could leave this at that, and in the interest of remaining gainfully employed I probably should. However, for the sake of those surviving HIV/AIDS, those affected or at risk for seroconversion and those who care about the aforementioned folks and the work that must continue, I’ll say a few words.

I miss my podium. My blog posts. My articles. My tweets. My survivors. My badges of survival. The realness. The grassroots. Data. Truth. Empathy. Knowledge. Those affected. Those who love. Those who read. Those whose blood is in the midst of a microscopic battle, praying for that moment of reaching undetectable…or a cure. Those who are dying and ain’t even know it. But alas, they are not in charge. They are not employed. They are seen–sometimes–but never heard or understood. The zoo is real. The petting zoo. They ooohhh and awwww but are never truly in awe of the struggle and the will to live possessed, created, sustained, nurtured and protected by survivors of HIV/AIDS. They pity them with adjectives like “infected.” They see a disease. They see suffering. They feel sad. But the disease, the suffering, the sadness is not within the survivor or the HIV thriver but instead that person who fails to grasp the humanity being stolen in the zoo, in the circus, in favor of their own religious drive toward altruism. It’s cute. That burnt out soul. It did some good things. Got a grant. Raised a milly. Made some phone calls. Enrolled someone in care. Got them by..til tomorrow. But the real work, the real struggle, is the will to live, love and laugh on and until these folks in these positions of authority know what that means…every survivor will be fucked in each hole they have and those yet to be known. So here is what i propose.

HIV/AIDS should be mostly controlled by folks surviving HIV/AIDS and at risk for seroconversion.

Policies cannot be about us without us at the head of the table.

Leadership should reflect demographic realities.

Those employed cannot fear or continue to stigmatize those seeking services. Hopefully those employed will have at some point, or still be, those seeking services.

Services should be client-facing, client informed and client led…that doesn’t mean servitude but it does mean we take all opportunities to collect qualitative and quantitative data straight from the communities, the spaces, the bodies that we work in/on/for/with/through.

HIV- that’s cute that you’re negative. But fall-back, because this shit is about survival and living. It’s great that you were tested and you got your results and you want to put them on the Facebook. But think about what that shit does to those that are surviving, the implicit message it sends. The pride is not in your status, but it is in the knowledge of status and what you do to further strengthen your body into the temple it will always be.

Stigma…when we say disclose..we need to know what the fuck we’re requiring. 45+ states have criminal statutes, policies or precedents where HIV+ folks engaged in consensual, safe sex where there status has been disclosed are prosecuted as sex offenders, bio terrorists, attempted murderers and murderers…almost always in cases where hiv has never been transmitted and/or when no scientific risk is present.

Responsibility..don’t put on the poz folk. Make that shit mutual. Sex is a risk. Accepted that shit and act accordingly.

Professional development. If you work in ASO and you don’t know what undetectable is, you don’t know the side effects of the most popular meds, you don’t know the demographics or the legal realities for poz folk…do your job or get the hell out of the way. We’d never allow someone to be a doctor if they couldn’t check their client’s pulse.

aight i’m done for now…just kidding.

Lastly, when you have poz clients and you’re negative, don’t ever assume if you know more than they do about HIV. You’re here for a check and because you care. They’re here because their life depends on it. #BowDown

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