I’ve Been Thinking
The HIV Disclosure Project encourages all people living with HIV, regardless of whether or not they are out about their HIV status, to contribute to our project. We acknowledge how coming out publicly can be a process and in spite of individuals who choose to proudly announce their status, many others, for whatever reason, are not public, yet wish to contribute.. Some of our posts are anonymous, while others are not but they are real stories from real people. We encourage all people living with HIV and our allies to contribute in any way they feel comfortable in doing so.
Thank you for your contribution to disclosure of HIV to potential sex partners.
I have many concerns about the state of affairs in what I call the “AIDS industry” and in no particular order have decided to address them through the HIV Disclosure Project. Stephen Lewis strongly encourages us to name names. Although I agree with him and see the effectiveness of this practice, I am not in the same position as Stephen Lewis and naming names makes me somewhat uncomfortable and feeling vulnerable, for good reason.As an individual, I run the risk of being shut down on the internet, be it through malicious spyware on my computer or blocking me and I am not yet convinced that the HIV community will rally to support me. Rather than naming particular names I will give a brief and general summary of experiences over the years with some influential non profit organizations and paradoxically, organizations who carry the mandate of upholding basic human rights, while discouraging any sort of discrimination.
The first one that comes to mind is a well respected non profit organization which “unhired me 45 minutes after I disclosed my HIV status when I was told at the last minute an HIV test was required for the position in which I was hired.That was some time ago, when I was not aware that this question is not legal and I do hope their policies have since changed, but I doubt it.I had forgotten about this unfortunate incident until this week when I saw the non profit on Twitter, with an impressive number of followers, some of them being the same organizations or individuals who follow me.It prompted me to write but I am not sure if naming names would do any good,as individuals and organizations tend to believe and see only that which resonates well with them, or serves their interests, regardless of the situation and getting in their way carries risks for individuals like me.
Another puzzling phenomenon which takes place on a regular basis is getting blocked on Twitter and other social media, by at least 2 celebrities who recently moved to publicly endorse the fight against HIV. Or by a reputable HIV organization offering services and support to people living with HIV, providing. as I naively realized, one plays by their rules and is not deemed a loose canon, who most likely is somewhat mentally unstable and erratic. You know who you are so there is no need to name names.
Which brings me to my next concern. There has been much information about ongoing and completed research studies demonstrating how people living with HIV are more likely to have experienced violence, sexual assault, emotional or mental instability and what appears to be a chaotic upbringing or past. As Stephen Lewis mentioned and I reaffirm, we already know this information. However, I support this research in so far as it is presumed to have some sort of positive outcome for participants by way of providing ongoing services and programs to address these serious social problems and to seek preventive measures for future generations. I do remain somewhat skeptical as I watched a situation unfold this past week online, in the state of Louisiana, where co-payments for life saving HIV medications were initially refused until a class action legal suit was initiated. If living saving medications can be abruptly refused, it does not leave me feeling overly optimistic about concrete, effective services to address violence and mental health in people living with HIV.
Conversely I am concerned how this scientific research will reinforce further, existing negative images of people living with HIV, whereby we all can be considered victims and somewhat unstable. I am not sure how this research deals with individuals who do not fit the profile. Are they supposed to identify with it regardless, in order to fit in and how is this scientifically proven profile supposed to help in the process of securing employment, becoming less marginalized or seeking stable relationship for people living with HIV? When and if they disclose their HIV status, they will be deemed mentally unstable along with being HIV-positive. Why not focus on more practical, positive, constructive issues, like finding ways, through legitimate research studies to help people living with HIV secure a healthy sex life? After all we complain enough about lack of sex and rejection due to stigma and the need for change in attitudes with potential sex partners.
There are projects and movements on social media and in the HIV community to change the image of people living with HIV, while strongly encouraging people living with HIV to come out, tell their stories and be recognized.I fully support these movements and recognize how silence and invisibility reinforces stigma and hinders empowerment. I understand how beneficial research and social movements are to the cause, if appropriate services are the outcome, but what happens after we come out and what exactly are we being recognized for? I am simply voicing frustrations as I feel stuck at an impasse.
The other concern I have is in relation to grants and funding which for the most part, require that we remain loyal to donors. How are we to independently provide critical analysis and feedback with these conditions in place? Of particular concern is the discouragement by donors of any mention of the word “activism” in funding proposals.The reality is with little or no funding, work does not get done as promptly or at all. This is a dilemma hindering progress, however I think we would be hard pressed to find a donor willing to give us carte blanche funding. This leaves us in the position of continuing to disseminate information, slogans and soft, Kumbaya type messages that are palpable to the general public, regardless of their effectiveness, or risk being independent and having no funding at all.
Yet another concern is all of the small organizations using most of their energies on scrambling for resources and funding to continue to exist while detracting from real issues. The energy wasted with small organizations on anxiety and concern about ongoing funding deters them from moving forward, mobilizing, empowering and organizing in a realistic fashion, as a strong force, in numbers and solidarity to address urgent concerns. I do not think we can wait on handouts and funding. We need to make it clear what our changing needs are and find ways to have straight forward dialogue with donors or look for alternative resources. We need to critically analyze services on a micro level and work more collaboratively as a larger group on identified causes. Maintaining too many small organizations, each with insufficient funding, duplicating services, conflicting with one and other, while expending energy on survival, ensures that we remain ineffective, divided and that our needs, often in contrast to what is dictated, never get met.
I recently listened to a radio segment describing the young urban hipsters in this city. Could we insist that if someone wishes to be referred to as an urban hipster that they begin by educating themselves about HIV and not rejecting the whole notion outright as they are busy being cool urban hipsters? Having said this I do acknowledge and am profoundly moved and grateful to those individuals in this community who are our allies. I know who you are.
We cannot be complacent. We have to be able to continually provide critical analysis of the situation. Now more than ever with new scientific evidence presented, which increasingly demonstrates how being undetectable really means we are not at risk to transmit the HIV virus to sex partners. We know that in spite of this scientific evidence being presented our battles are far from over. The skeptics and conservative agencies will stoke fear with horror stories about the “what ifs”, while pissing on our parade, in what is considered major progress for people living with HIV.
I have decided to use the skills I have to strengthen the HIV community, as a professional, with many years of experience, holding credentials from accredited universities, and arguably somewhat coherent, as I invite the HIV community to present a message to all HIV organizations to make changes, get tuned in, get ready, there are some drastic changes around the corner. It involves an entirely new way of thinking and you better be prepared as the community is either going to rely on you or make you redundant.
Let’s ride the next wave of this slow moving revolution in a way that shows cohesiveness, focus and strength.