You know the word.
It’s the one that all the community-based HIV resources are trying not to use these days because — you know — we don’t want to stigmatize the people who come to the organization with their HIV and leave people thinking that they have that other thing we don’t say anymore. The four-letter word that starts with “A” that is spoken in hushed tones and that we don’t say in polite company.
I got my diagnosis of AIDS in 1997, so I have my own particular views on this. I also work at an organization that made a conscious decision to keep using the “A” word (it’s actually the “S” word in French, but it is still a four-letter word and still faces the same controversy within our community).
In 1997, as today, the definition of AIDS in Québec (and I believe in all of Canada) is to have contracted one or more of a list of specific opportunistic infections. You don’t stop having AIDS, because you don’t erase that experience of an opportunistic infection. In the US, I believe there is also a CD4+ threshold of 200 that figures into the definition, so it might be more debatable as to whether you stop having AIDS if your CD4+ count rises above that level. In both countries, and around the world, this used to be a status that marked the beginning of the end of a one-way trip.
I will be the first to affirm that the designation is no longer important in the sense of a prognosis. It remains relevant in noting the state of a person’s health at a particular moment in time, but we live in an era where we come back to better health.
After more than sixteen years after my own AIDS diagnosis (with PCP and a CD4+ count of 4), I am not only still quite alive (and working full time, mind you!), but apparently healthy and active. But I’m still on that list of people who have been declared to have AIDS, and I tend to feel marginalized by those who think they are healthier than I am because they don’t have AIDS, only HIV, and are quite vocal about it.
Maybe we need a redefinition of AIDS that takes into account the possibility of rebuilding the immune system, at least to the point of not risking so many opportunistic infections, but until that time, I have my AIDS badge and I’ve sewn it on my uniform.
So what about the names of our organizations? A number have changed their names to remove the “A” word and to replace it with “HIV” or with some form of “positive”. This is to destigmatize the experience of turning to the organization for help, but I wonder to what extent we are just reinforcing the stigma around the “A” word by shunning it.
In the meantime, another role of the organizations is to communicate with the uninfected public, whether to encourage the prevention of HIV transmission, or to reduce the stigma that people living with HIV/AIDS have to deal with. Do we reduce stigma by hiding a part of our message because of internal sensitivities?
My own organization decided to retain the “A” word (actually the “S” word) in its title because we didn’t want to throw away that (unfortunately low, but not insignificant) level of understanding that has been achieved and maintained in the general public, or to start over with the establishment of our own reputation and identity on the public scene. Our messaging and our explanations talk about preventing the transmission of HIV and about living with HIV/AIDS, except in those cases where brevity will make the message clearer.
You will notice that in the English version of my recent anti-stigma video I use the “A” word at the end and in the French version, I use the “S” word. The alternative didn’t flow as well and would have been harder for the general public to understand.
Yes, we need to explain HIV/AIDS to the public so that they will understand in detail what we are talking about. Until we get to that level of knowledge and awareness, we need to draw their attention using the terms with which they are familiar while challenging their perceptions of what those things mean. I wonder what we accomplish when we go with the internalized stigma and jettison the familiarity and reputation that goes with our more stigmatized terminology (the “A” and “S” words).