Washington Blade - October 17, 2008
FROM THE EARLIEST years of the HIV-AIDS pandemic, the language
used to describe people who have the virus has been extremely
As people live a normal lifespan and eventually die from causes
other than AIDS, it is time to reconsider the outdated labels we
attach to them, which do more harm than good.
Early on, people typically learned they were infected only when
they got sick. Activists insisted they be called "people with
AIDS" rather than "AIDS victims" to make clear that they were not
This made sense before effective treatment became available in
the mid-1990s, when being HIV-positive affected every aspect of a
life and meant eventual certain death from AIDS.
Once it became clear that combinations of medications could
effectively control HIV infection, we said people were "living
with HIV" as fewer died from AIDS. Now professional caregivers,
government bureaucrats and donor organizations that fund HIV-AIDS
services call them "people living with HIV," PLHA or PLWHA for
This was an improvement, but they were still defined by the
results of a blood test. Their names, their life stories,
everything about them was subsumed in a diagnosis.
Even among those with the virus, the less articulate often
abbreviated their HIV-positive test result - usually referred to
as their "status" - by saying, simply, "I'm HIV."
Well, I am not HIV.
Call me the next generation of PLHA. Why not just call me by my
I have brown eyes I inherited from both my parents. I have my
mother's dimples. I have my father's forehead.
And I have HIV.
My mother has diabetes. My father had (and died from) cancer.
Mom would be the first to say, "I have diabetes." Dad of course
said he had cancer.
But it would never cross their mind - or anyone else's, for that
matter - to say, "I am diabetes" or "I am cancer." In fact we
would puzzle, even shudder, at the thought of subsuming all a
person is into her or his diabetes or cancer diagnosis.
So why do we do it with HIV?
Here's why: So those who don't have the virus can feel safe. So
they can see those of us with the virus as "other" than
It seems one of human nature's least noble qualities that makes
us need to believe we are different from or better than someone
else for some reason or other. Sometimes it's based on skin
color. Other times it's based on weight. Or religion. Or
In fact, there's no limit to the possible reasons for drawing
lines between ourselves, the enlightened, and others, the
ignorant, the smart and the stupid, those who make "good" choices
and those who don't.
I thought that way during all the years I tested negative while
my friends got infected and died. I thought I was smarter, made
good choices, maybe even had a genetic reason for not getting
infected. After all, I had done the same things as my friends and
yet I didn't get infected. Didn't that "mean" something?
But then my doctor in 2005 told me, "I have bad news on the HIV
And it turned my world upside down.
Suddenly I was one of "them," one of the people I thought was
somehow different from me, not as smart as I'd thought.
I was humbled to realize I was no different, no smarter, no more
resistant to the same microbial menace that had terrorized so
many millions before me.
HIV is something I have - just as I "have" opportunities
throughout the day, every day, to choose a life of joy or to
surrender to despair.
HIV is not who I am. Which is why I reject the label of "person
with HIV" or even the ostensibly more affirming "person living
Pick your label, but they all reduce me to a diagnosis. And I am
far more than the result of a blood test.
This is why it is time for people who have HIV to reject the
patronizing need of those who consider themselves (some actually
use the word) "clean" - who imply that we are therefore "unclean"
and, let's be clear, unfit for human contact, love and sexual
It is time to define ourselves in our own terms, not in terms of
a diagnosis. It is time to say HIV is something I have, not who I
am. It is time to reclaim our names.
My name is John.
John-Manuel Andriote is the author of �Victory Deferred: How AIDS
Changed Gay Life in America.' He can be reached via this publication.