22 December 2017
So, I have now survived my AIDS diagnosis by 20 years and I will mark the occasion by venting about language in relation to this epidemic.
Some will balk at the use of the term AIDS at all, and I can understand that to some degree. As the — uh — proud (?!) owner of a diagnosis of AIDS, I have to recognize that it just doesn’t mean the same thing that it did decades ago. In the beginning, it was as much a prognosis as a diagnosis, an indication of where one was on the one-way trip to disease and death. Not anymore. “AIDS” as a term is still useful to diagnoses someone who has waited too long to get tested for HIV or for whom treatment hasn’t been working, but one can now expect to recover from those things. Even I, with my very late diagnosis at a point where I was basically without an immune system, have survived 20 years in pretty good health with treatment.
So I’ll concede that it is not always appropriate to speak of AIDS and most times more appropriate to refer to HIV.
Now we seem to also be dealing with the disappearance of the acceptability of using HIV as a term. I’m not talking about our governments’ tendency toward convergence in their funding and strategies, bringing all sexually transmitted and blood borne infections together — that makes sense all the time for prevention, although it is still useful to pull out the HIV to recognize some of the social effects and stigmatization that are less evident with the other STBBIs. No, I’m talking about addressing HIV stigma by not saying its name out loud, by changing organization names to omit all reference to HIV or AIDS, by speaking strangely about “lived experience” as code for living with HIV instead of naming it. (We all have lived experience of something, right?)
Hiding HIV and hiding AIDS will do nothing to address the stigma that is associated with this epidemic. If anything it will make it worse.
In that vein, let me turn to another practice in our movement, marked as it is by what I like to call the culture of secrecy. I understand confidentiality and the need for it for people the most likely to suffer negative effects of stigma. What I don’t understand is the special brand of zealousness that would impose that secrecy on my own speaking of my own experiences. Let me illustrate with a few examples.
I was recently at the hospital testing centre for my regular blood tests. As the clerk at the desk shuffled through the too-many papers that my doctor had given me to identify which tests to do, she began handing papers back to me. One was for my HIV viral load, and I pointed that out to her: “If I’m not getting an HIV viral load, why am I even wasting my time here?” She fell all over herself trying to keep my voice down, so as not to compromise the confidentiality that I guess I was too thick to protect for myself.
On another occasion, years ago, I was at a gathering of HIV-positive people and proposed a resolution to change the way the minutes of the meetings would be reported. There was in place a practice of blacking out the names of the proposers and seconders of motions to protect the confidentiality of those participating actively at the meetings. My proposal was to allow us to choose whether or not our names would appear as a part of the official record. My motion passed quite easily. When we returned to the same meeting the following year, the most egregious example of this culture of secrecy sprang forth, as the minutes of the previous year’s meeting were presented to us, my motion clear on the page, but my name and the name of the seconder blacked out. (We objected!)
Finally, when my friend Doug died in 2014, the organization with which we had both identified in our pasts proceeded with its annual ritual at its general meeting, naming those we had lost during the year while lighting candles and inviting the crowd to observe a moment of silence. The person reading out the names made an error, diverging from the organization’s usual practice of pronouncing the first name and the initial of the family name, and actually read out whole names. Doug would have approved heartily, as did I. I got up at the end of the meeting and congratulated them on the move, expressing my hope that it was a change of policy and they would not be returning to the other practice.
I understand that not everyone is in my position — I am living my experience of HIV with a lot of privilege. I have supportive friends and family members, it would be much more of a scandal for me to lose my job for being HIV-positive than to keep it (I work for an AIDS organization) and I go about freely identifying myself as a person living with HIV. After all this effort, I will not tolerate my experience of living with HIV being scrubbed from the record, as that would go against everything I stand for.
I would rather be forgotten entirely than anonymized posthumously by some misguided notion of protecting my confidentiality.