Putting the ‘Human’ Back in H.I.V. | Arik Hartmann | TEDxVermilionStreet


Translator: Leonardo Silva
Reviewer: Raissa Mendes So, I want to start this talk
by showing you all a photo, and it’s a photo that many of you
have probably seen before. So, I want you all to take a moment
and look at this photo, and really reflect on some
of the things that come to mind. And what are some
of those things, those words? Now, I’m going to ask
you all to look at me. What words come to mind
when you look at me? What separates that man up there from me? The man in that photo
is named David Kirby, and it was taken in 1990 as he was dying
from AIDS-related illness, and it was subsequently published
in Life Magazine. The only real thing
separating me from Kirby is about 30 years of medical advancements
in the way that we treat HIV and AIDS. So, what I want to ask next is this: if we have made such exponential
progress in combating HIV, why haven’t our perceptions of those
with the virus evolved alongside? Why does HIV elicit this reaction from us
when it’s so easily managed? When did this stigmatization even occur,
and why hasn’t it subsided? And these are not
easy questions to answer. They’re the congealing
of some many different factors and ideas. Powerful images like this one of Kirby, these were the faces of the AIDS crisis
in the ’80s and ’90s, and at the time, the crisis
had a very obvious impact on an already stigmatized group of people,
and that was gay men. So, what the general straight public saw
was this very awful thing happening to a group of people who were
already on the fringes of society. The media at the time began using
the two almost interchangeably – “gay” and “AIDS” – and at the 1984 Republican
National Convention, one of the speakers joked
that “gay” stood for “Got AIDS Yet?” And that was the mindset of the time. But as we started to understand the virus
more and how it was transmitted, we realized that that risk
had increased its territory. The highly profiled case
of Ryan White in 1985, he was a 13-year-old hemophiliac who had contracted HIV
from a contaminated blood treatment. And this marked the most profound shift
in America’s perception of HIV. No longer was it restricted
to these dark corners of society, to queers and drug users, but now it was affecting people that
society deemed worthy of their empathy: children. But that permeating fear
and that perception, it still lingers. And I want a show of hands
for these next few questions. How many of you in here were aware
that, with treatment, those with HIV not only
fend off AIDS completely, but they live full and normal lives? You all are educated. (Laughter) How many of you were aware
that, with treatment, those with HIV can reach
an undetectable status and that makes them
virtually uninfectious? Much less. How many of you were aware
of the pre and post-exposure treatments that are available and that reduce
the risk of transmission by over 90%? See, these are incredible advancements
that we have made in fighting HIV. Yet, they have not managed
to dent the perception that most Americans have of the virus
and those living with it. And I don’t want you to think
I’m downplaying the danger of this virus, and I am not ignorant of the
harrowing past of the AIDS epidemic. I am trying to convey
that there’s hope for those infected and HIV is not the death sentence
it was in the ’80s. And now you may ask – and I asked
this question myself initially: Where are the stories? Where are these people living with HIV?
Why haven’t they been vocal? How can I believe these successes,
or these statistics, without seeing the successes? And this is actually
a very easy question for me to answer. Fear, stigma and shame. These keep those living with HIV
in the closet, so to speak. Our sexual histories are as personal to us
as our medical histories, and when you overlap the two, you can find yourself
in a very sensitive space. The fear of how others perceive us
when we’re honest keeps us from doing many things in life, and this is the case
for the HIV-positive population. To face social scrutiny and ridicule
is the price that we pay for transparency. And why become a martyr when you can
effectively pass as someone without HIV? After all, there are no physical
indications you have the virus. There’s no sign that you wear. There is safety in assimilation
and there is safety in invisibility. I’m here to throw back that veil
and share my story. So, in the fall of 2014,
I was a sophomore in college, and like most college students,
I was sexually active, and I generally took precautions
to minimize the risk that sex carries. Now, I say “generally”
because I wasn’t always safe. It only takes a single misstep
before we’re flat on the ground, and my misstep is pretty obvious: I had unprotected sex,
and I didn’t think much of it. Fast-forward about three weeks, and it felt like I had been trampled
by a herd of wildebeest. The aches in my body were
like nothing I had felt before or since. I would get these bouts
of fever and chill. I would reel with nausea,
and it was difficult to walk. Being a biology student,
I had some prior exposure to disease, and being a fairly informed gay man,
I had read a bit on HIV. So, to me, it clicked
that this was seroconversion, or as it’s sometimes called,
acute HIV infection. And this is the body’s reaction in producing antibodies
to the HIV antigen. It’s important to note that not everybody
goes through this phase of sickness, but I was one of lucky ones who did. And I was lucky as there were these
physical symptoms that let me know, “Hey, something is wrong,” and it let me detect
the virus pretty early. So, just to clarify,
just to hit the nail on the head, I got tested on campus. And they said they would call me
the next morning with the results, and they called me, but they asked me to come in
and speak to the doctor on staff. And the reaction I received from her
wasn’t what I was expecting. She reassured me what I already knew,
that this wasn’t a death sentence. And even offered me
to put me in contact with her brother who’d been living with HIV
since the early ’90s. I declined her offer,
but I was deeply touched. I was expecting to be reprimanded,
I was expecting pity and disappointment, and I was shown compassion
and human warmth, and I’m forever grateful
for that first exchange. So, obviously, for a few weeks,
I was a physical mess. Emotionally, mentally,
I was doing okay, I was taking it well, but my body was ravaged, and those close to me,
they weren’t oblivious. So, I sat my roommates down and I let them know
I’d been diagnosed with HIV, that I was about to receive treatment
and I didn’t want them to worry. And I remember the look on their faces, and they were holding each other
on the couch and they were crying, and I consoled them. I consoled them about my own bad news! (Laughter) But it was heartwarming
to see that they cared. But, from that night, I noticed a shift
in the way that I was treated at home. My roommates wouldn’t touch
anything of mine, and they wouldn’t eat anything I’d cooked. Now, in South Louisiana,
we all know that you don’t refuse food. (Laughter) And I’m a damn good cook,
so don’t think that passed me by! (Laughter) But from these first silent hints, their aversion got gradually
more obvious and more offensive. I was asked to move my toothbrush
from the bathroom. I was asked to not share towels. And I was even asked to wash
my clothes on a hotter setting. This wasn’t head lice, y’all.
This wasn’t scabies. This was HIV. It can be transmitted through blood, sexual fluids, like semen
or vaginal fluids, and breast milk. Since I wasn’t sleeping with my roommates,
I wasn’t breastfeeding them – (Laughter) and we weren’t re-enacting “Twilight,” I was of no risk to them, and I made this aware to them,
but still, this discomfort, it continued, until eventually I was asked to move out. And I was asked to move out
because one of my roommates had shared my status with her parents. She shared my personal
medical information to strangers. And now, I’m doing that
in a room full of 300 of you all, but at the time, this was not
something I was comfortable with, and they expressed their discomfort
with their daughter living with me. So, being gay, raised in a religious
household and living in the south, discrimination wasn’t new to me, but this form was, and it was tremendously disappointing because it came
from such an unlikely source. Not only were these
college-educated people, not only were they other members
of the LGBT community, but they were also my friends. So, I did, I moved out
at the end of the semester, but it wasn’t to appease them. It was out of respect for myself. I wasn’t going to subject myself to people who were unwilling
to remedy their ignorance, and I wasn’t going to let something
that was now a part of me ever be used as a tool against me. So, I opted for transparency
about my status, always being visible. And this is what I like to call
“being the everyday advocate.” And the point of this transparency,
the point of this everyday advocacy, was to dispel ignorance. And “ignorance” is a very scary word. We don’t want to be seen as ignorant, and we definitely
don’t want to be called it, but “ignorance” is not
synonymous with “stupid.” It’s not the inability to learn. It’s the state you’re in before you learn. So, when I saw someone coming
from a place of ignorance, I saw an opportunity for them to learn. And hopefully, if I could
spread some education, then I could mitigate
situations for others like I had experienced with my roommates, and save someone else
down the line that humiliation. So, the reactions I received
haven’t been all positive. Here in the south, we have a lot of stigma
due to religious pressures, our lack of a comprehensive sex education and our general conservative outlook
on anything sexual. We view this as a gay disease. Globally, most new HIV infections
occur between heterosexual partners, and here in the States,
women, especially women of color, are at an increased risk. This is not a gay disease,
it never has been. It’s a disease we should
all be concerned with. So, initially, I felt limited. I wanted to expand my scope
and reach beyond what was around me. So, naturally, I turned to the dark underworld
of online dating apps, to apps like Grindr. And for those of you who are unfamiliar, these are dating apps
targeted towards gay men. You can upload a profile and a picture and it will show you
available guys within a radius. You all have probably heard of Tinder. Grindr has been around for a lot longer, since it was much harder
to meet your future gay husband at church or at the grocery store,
or whatever straight people did before they found out
they could date on their phones. (Laughter) So, on Grindr, if you liked
what you saw or read, you could send someone a message,
you can meet up, you can do other things. So, on my profile,
I obviously stated that I had HIV, I was undetectable and I welcomed
questions about my status. And I received a lot of questions
and a lot of comments, both positive and negative. And I want to start with the negative, just to frame some of this ignorance
that I’ve mentioned before. And most of these negative comments
were passing remarks or assumptions. They would assume things
about my sex life or my sex habits. They would assume
I put myself or others at risk. But very often, I would just be met
with these passing ignorant remarks. In the gay community,
it’s common to hear the word “clean” when you’re referring to someone
who’s HIV-negative. Of course, the flip side to that
is being “unclean” or “dirty,” when you do have HIV. Now, I’m not sensitive and I’m only
truly dirty after a day in the field, but this is damaging language. This is a community-driven stigma that keeps many gay men
from disclosing their status and it keeps those newly diagnosed
from seeking support within their own community, and I find that truly distressing. But thankfully, the positive responses
have been a lot more numerous and they came from guys who were curious, and they were curious
about the risks of transmission, or what exactly “undetectable” meant, or where they could get tested, or some guys would ask me
about my experiences and I could share my story with them. But most importantly, I would get approached by guys
who were newly diagnosed with HIV, and they were scared and they were alone and they didn’t know
what step to take next. They didn’t want to tell their family,
they didn’t want to tell their friends and they felt damaged,
and they felt dirty. And I did whatever I could
to immediately calm them, and then I would put them
in contact with AcadianaCares, which is a wonderful resource
we have in our community for those with HIV. And I’d put them in contact
with people I knew personally, so that they could not only have
this safe space to feel human again, but so they could also have the resources
they needed in affording their treatment. And this was by far the most
humbling aspect of my transparency, that I could have some positive impact
on those who were suffering like I did, that I could help those
who were in the dark, because I had been there
and it wasn’t a good place to be. These guys came
from all different backgrounds, and many of them weren’t
as informed as I had been, and they were coming to me
from a place of fear. Some of these people I knew personally, or they knew of me, but many more, they were anonymous. They were these blank profiles who were too afraid to show their faces
after what they had told me. And on the topic of transparency, I want to leave you all
with a few thoughts. I found that with whatever risk or gamble
I took in putting my face out there, it was well worth any negative comment,
any flak I received, because I felt I was able to make
this real and this tangible impact. And it showed me that our efforts resound, that we can alter the lives
that we encounter for the good, and they in turn can take that momentum
and push it even further. And if any of you and anyone
you know is dealing with HIV, or if you want to see what resources
you have in your community or just educate yourself more
on the disease, here are some wonderful
national sites that you can access, and you are more than welcome
to find me after this talk and ask me anything you’d like. We’ve all heard the phrase
“to see the forest through the trees.” So, I implore all of you here to really
see the human through the disease. It’s a very easy thing
to see numbers and statistics and only see the perceived dangers. It’s a much harder thing to see
all the faces behind those numbers. So, when you find yourself
thinking those things, those words, what you might have thought
looking at David Kirby, I ask you instead, think “son,” or think “brother,” think “friend,” and most importantly, think “human.” Seek education when faced with ignorance, and always be mindful
and always be compassionate. Thank you. (Applause)

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