TEDxVermilionStreet
Arik Hartmann: Our treatment of HIV has advanced. Why hasn't the stigma changed?
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The treatment of HIV has significantly advanced over the past three decades -- why hasn't our perception of people with the disease advanced along with it? After being diagnosed with HIV, Arik Hartmann chose to live transparently, being open about his status, in an effort to educate people. In this candid, personal talk, he shares what it's like to live with HIV -- and calls on us to dismiss our misconceptions about the disease.
Arik Hartmann - Naturalist
Arik Hartmann is tackling the ignorance and misinformation surrounding HIV/AIDS. Full bio
Arik Hartmann is tackling the ignorance and misinformation surrounding HIV/AIDS. Full bio
Double-click the English transcript below to play the video.
00:12
So I want to start this talk
by showing y'all a photo,
by showing y'all a photo,
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and it's a photo many of you
have probably seen before.
have probably seen before.
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So I want you all to take a moment
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and look at this photo,
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and really reflect on some
of the things that come to mind,
of the things that come to mind,
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and what are some
of those things, those words.
of those things, those words.
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Now, I'm going to ask you all
to look at me.
to look at me.
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What words come to mind
when you look at me?
when you look at me?
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What separates that man up there
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from me?
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The man in that photo is named David Kirby
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and it was taken in 1990
as he was dying from AIDS-related illness,
as he was dying from AIDS-related illness,
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and it was subsequently
published in "Life Magazine."
published in "Life Magazine."
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The only real thing
separating me from Kirby
separating me from Kirby
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is about 30 years of medical advancements
in the way that we treat HIV and AIDS.
in the way that we treat HIV and AIDS.
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So what I want to ask next is this:
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If we have made such exponential progress
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in combatting HIV,
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why haven't our perceptions
of those with the virus evolved alongside?
of those with the virus evolved alongside?
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Why does HIV elicit this reaction from us
when it's so easily managed?
when it's so easily managed?
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When did the stigmatization even occur,
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and why hasn't it subsided?
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And these are not
easy questions to answer.
easy questions to answer.
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They're the congealing
of so many different factors and ideas.
of so many different factors and ideas.
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Powerful images, like this one of Kirby,
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these were the faces of the AIDS crisis
in the '80s and '90s,
in the '80s and '90s,
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and at the time the crisis
had a very obvious impact
had a very obvious impact
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on an already stigmatized group of people,
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and that was gay men.
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So what the general straight public saw
was this very awful thing
was this very awful thing
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happening to a group of people who
were already on the fringes of society.
were already on the fringes of society.
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The media at the time began
to use the two almost interchangeably --
to use the two almost interchangeably --
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gay and AIDS --
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02:07
and at the 1984
Republican National Convention,
Republican National Convention,
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one of the speakers joked
that gay stood for: "Got AIDS yet?"
that gay stood for: "Got AIDS yet?"
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And that was the mindset at the time.
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But as we started
to understand the virus more
to understand the virus more
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and how it was transmitted,
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we realized that that risk
had increased its territory.
had increased its territory.
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The highly profiled case
of Ryan White in 1985,
of Ryan White in 1985,
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who was a 13-year-old hemophiliac
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who had contracted HIV
from a contaminated blood treatment,
from a contaminated blood treatment,
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and this marked the most profound shift
in America's perception of HIV.
in America's perception of HIV.
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No longer was it restricted
to these dark corners of society,
to these dark corners of society,
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to queers and drug users,
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but now it was affecting people
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that society deemed
worthy of their empathy,
worthy of their empathy,
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to children.
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02:54
But that permeating fear
and that perception, it still lingers.
and that perception, it still lingers.
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And I want a show of hands
for these next few questions.
for these next few questions.
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How many of you in here
were aware that with treatment,
were aware that with treatment,
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those with HIV not only
fend off AIDS completely,
fend off AIDS completely,
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but they live full and normal lives?
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Y'all are educated.
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03:15
(Laughter)
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How many of you are aware
that with treatment,
that with treatment,
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those with HIV can reach
an undetectable status,
an undetectable status,
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03:22
and that makes them
virtually uninfectious?
virtually uninfectious?
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Much less.
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How many of you were aware
of the pre- and postexposure treatments
of the pre- and postexposure treatments
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that are available
that reduce the risk of transmission
that reduce the risk of transmission
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by over 90 percent?
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See, these are incredible advancements
that we have made in fighting HIV,
that we have made in fighting HIV,
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yet they have not managed
to dent the perception
to dent the perception
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that most Americans have
of the virus and those living with it.
of the virus and those living with it.
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And I don't want you to think
I'm downplaying the danger of this virus,
I'm downplaying the danger of this virus,
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and I am not ignorant of
the harrowing past of the AIDS epidemic.
the harrowing past of the AIDS epidemic.
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I am trying to convey
that there is hope for those infected
that there is hope for those infected
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04:03
and HIV is not the death sentence
it was in the '80s.
it was in the '80s.
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And now you may ask, and I asked
this question myself initially:
this question myself initially:
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Where are the stories?
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Where are these people living with HIV?
Why haven't they been vocal?
Why haven't they been vocal?
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How can I believe these successes,
or these statistics,
or these statistics,
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without seeing the successes?
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And this is actually
a very easy question for me to answer.
a very easy question for me to answer.
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Fear, stigma and shame:
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these keep those living with HIV
in the closet, so to speak.
in the closet, so to speak.
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Our sexual histories are as personal
to us as our medical histories,
to us as our medical histories,
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and when you overlap the two,
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you can find yourself
in a very sensitive space.
in a very sensitive space.
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The fear of how others
perceive us when we're honest
perceive us when we're honest
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keeps us from doing many things in life,
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and this is the case
for the HIV-positive population.
for the HIV-positive population.
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To face social scrutiny and ridicule
is the price that we pay for transparency,
is the price that we pay for transparency,
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and why become a martyr
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05:01
when you can effectively pass
as someone without HIV?
as someone without HIV?
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After all, there are no
physical indications you have the virus.
physical indications you have the virus.
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There's no sign that you wear.
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There is safety in assimilation,
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and there is safety in invisibility.
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I'm here to throw back that veil
and share my story.
and share my story.
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So in the fall of 2014,
I was a sophomore in college
I was a sophomore in college
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and like most college students,
I was sexually active,
I was sexually active,
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and I generally took precautions
to minimize the risk that sex carries.
to minimize the risk that sex carries.
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Now, I say generally,
because I wasn't always safe.
because I wasn't always safe.
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It only takes a single misstep
before we're flat on the ground,
before we're flat on the ground,
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and my misstep is pretty obvious.
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I had unprotected sex,
and I didn't think much of it.
and I didn't think much of it.
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Fast-forward about three weeks,
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and it felt like I'd been trampled
by a herd of wildebeest.
by a herd of wildebeest.
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The aches in my body were
like nothing I have felt before or since.
like nothing I have felt before or since.
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I would get these bouts
of fever and chill.
of fever and chill.
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I would reel with nausea,
and it was difficult to walk.
and it was difficult to walk.
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Being a biology student,
I had some prior exposure to disease,
I had some prior exposure to disease,
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and being a fairly informed gay man,
I had read a bit on HIV,
I had read a bit on HIV,
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so to me, it clicked
that this was seroconversion,
that this was seroconversion,
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or as it's sometimes called,
acute HIV infection.
acute HIV infection.
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And this is the body's reaction
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in producing antibodies
to the HIV antigen.
to the HIV antigen.
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It's important to note that not everybody
goes through this phase of sickness,
goes through this phase of sickness,
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but I was one of the lucky ones who did.
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And I was lucky as in,
there were these physical symptoms
there were these physical symptoms
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that let me know, hey, something is wrong,
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and it let me detect
the virus pretty early.
the virus pretty early.
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So just to clarify,
just to hit the nail on head,
just to hit the nail on head,
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I got tested on campus.
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And they said they would call me
the next morning with the results,
the next morning with the results,
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and they called me,
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but they asked me to come in
and speak to the doctor on staff.
and speak to the doctor on staff.
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And the reaction I received from her
wasn't what I was expecting.
wasn't what I was expecting.
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She reassured me what I already knew,
that this wasn't a death sentence,
that this wasn't a death sentence,
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and she even offered
to put me in contact with her brother,
to put me in contact with her brother,
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who had been living with HIV
since the early '90s.
since the early '90s.
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I declined her offer,
but I was deeply touched.
but I was deeply touched.
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I was expecting to be reprimanded.
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I was expecting pity and disappointment,
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and I was shown compassion
and human warmth,
and human warmth,
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and I'm forever grateful
for that first exchange.
for that first exchange.
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So obviously for a few weeks,
I was a physical mess.
I was a physical mess.
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Emotionally, mentally, I was doing OK.
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I was taking it well.
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But my body was ravaged,
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and those close to me,
they weren't oblivious.
they weren't oblivious.
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So I sat my roommates down,
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and I let them know
I'd been diagnosed with HIV,
I'd been diagnosed with HIV,
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that I was about to receive treatment,
and I didn't want them to worry.
and I didn't want them to worry.
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And I remember the look on their faces.
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They were holding each other
on the couch and they were crying,
on the couch and they were crying,
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and I consoled them.
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I consoled them about my own bad news,
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but it was heartwarming
to see that they cared.
to see that they cared.
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But from that night, I noticed a shift
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in the way that I was treated at home.
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My roommates wouldn't
touch anything of mine,
touch anything of mine,
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and they wouldn't eat
anything I had cooked.
anything I had cooked.
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Now, in South Louisiana,
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we all know that you don't refuse food.
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(Laughter)
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And I'm a damn good cook,
so don't think that passed me by.
so don't think that passed me by.
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(Laughter)
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But from these first silent hints,
their aversion got gradually more obvious
their aversion got gradually more obvious
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and more offensive.
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I was asked to move my toothbrush
from the bathroom,
from the bathroom,
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I was asked to not share towels,
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and I was even asked
to wash my clothes on a hotter setting.
to wash my clothes on a hotter setting.
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This wasn't head lice, y'all.
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This wasn't scabies. This was HIV.
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It can be transmitted through blood,
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sexual fluids like semen or vaginal fluids
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and breast milk.
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Since I wasn't sleeping with my roommates,
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I wasn't breastfeeding them --
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(Laughter)
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and we weren't reenacting "Twilight,"
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I was of no risk to them
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and I made this aware to them,
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but still, this discomfort, it continued,
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until eventually I was asked to move out.
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And I was asked to move out
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because one of my roommates
had shared my status with her parents.
had shared my status with her parents.
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She shared my personal
medical information to strangers.
medical information to strangers.
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And now I'm doing that
in a roomful of 300 of y'all,
in a roomful of 300 of y'all,
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but at the time, this was not
something I was comfortable with,
something I was comfortable with,
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and they expressed their discomfort
with their daughter living with me.
with their daughter living with me.
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So being gay, raised
in a religious household
in a religious household
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and living in the South,
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discrimination wasn't new to me.
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But this form was,
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and it was tremendously disappointing
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because it came
from such an unlikely source.
from such an unlikely source.
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Not only were these
college-educated people,
college-educated people,
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not only were they other members
of the LGBT community,
of the LGBT community,
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but they were also my friends.
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So I did. I moved out
at the end of the semester.
at the end of the semester.
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But it wasn't to appease them.
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It was out of respect for myself.
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I wasn't going to subject myself to people
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who were unwilling
to remedy their ignorance,
to remedy their ignorance,
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and I wasn't going to let something
that was now a part of me
that was now a part of me
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ever be used as a tool against me.
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So I opted for transparency
about my status,
about my status,
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always being visible.
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And this is what I like to call
being the everyday advocate.
being the everyday advocate.
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The point of this transparency,
the point of this everyday advocacy,
the point of this everyday advocacy,
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was to dispel ignorance,
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and ignorance is a very scary word.
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We don't want to be seen as ignorant,
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and we definitely
don't want to be called it.
don't want to be called it.
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But ignorance is not
synonymous with stupid.
synonymous with stupid.
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It's not the inability to learn.
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It's the state you're in before you learn.
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So when I saw someone
coming from a place of ignorance,
coming from a place of ignorance,
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I saw an opportunity for them to learn.
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And hopefully, if I could
spread some education,
spread some education,
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then I could mitigate
situations for others
situations for others
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like I had experienced with my roommates
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and save someone else
down the line that humiliation.
down the line that humiliation.
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So the reactions I received
haven't been all positive.
haven't been all positive.
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Here in the South,
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we have a lot stigma
due to religious pressures,
due to religious pressures,
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our lack of a comprehensive sex education
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and our general conservative outlook
on anything sexual.
on anything sexual.
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We view this as a gay disease.
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Globally, most new HIV infections
occur between heterosexual partners,
occur between heterosexual partners,
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and here in the States,
women, especially women of color,
women, especially women of color,
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are at an increased risk.
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This is not a gay disease.
It never has been.
It never has been.
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It's a disease we should
all be concerned with.
all be concerned with.
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So initially, I felt limited.
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I wanted to expand my scope
and reach beyond what was around me.
and reach beyond what was around me.
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So naturally,
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I turned to the dark underworld
of online dating apps,
of online dating apps,
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to apps like Grindr,
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and for those of you who are unfamiliar,
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these are dating apps
targeted towards gay men.
targeted towards gay men.
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You can upload a profile and a picture
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and it will show you
available guys within a radius.
available guys within a radius.
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Y'all have probably heard of Tinder.
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Grindr has been around for a lot longer,
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since it was much harder
to meet your future gay husband
to meet your future gay husband
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at church or the grocery store,
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or whatever straight people did
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before they found out
they could date on their phones.
they could date on their phones.
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(Laughter)
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So on Grindr, if you liked
what you saw or read,
what you saw or read,
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you could send someone a message,
you can meet up, you can do other things.
you can meet up, you can do other things.
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So on my profile,
I obviously stated that I had HIV,
I obviously stated that I had HIV,
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I was undetectable, and I welcomed
questions about my status.
questions about my status.
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And I received a lot of questions
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and a lot of comments,
both positive and negative.
both positive and negative.
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And I want to start with the negative,
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just to frame some of this ignorance
that I've mentioned before.
that I've mentioned before.
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And most of these negative comments
were passing remarks or assumptions.
were passing remarks or assumptions.
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They would assume things
about my sex life or my sex habits.
about my sex life or my sex habits.
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They would assume
I put myself or others at risk.
I put myself or others at risk.
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But very often I would just be met
with these passing ignorant remarks.
with these passing ignorant remarks.
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In the gay community,
it's common to hear the word "clean"
it's common to hear the word "clean"
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when you're referring to someone
who is HIV negative.
who is HIV negative.
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Of course the flip side to that
is being unclean, or dirty,
is being unclean, or dirty,
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when you do have HIV.
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Now, I'm not sensitive
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and I'm only truly dirty
after a day in the field,
after a day in the field,
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but this is damaging language.
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13:31
This is a community-driven stigma
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that keeps many gay men
from disclosing their status,
from disclosing their status,
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and it keeps those newly diagnosed
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from seeking support
within their own community,
within their own community,
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and I find that truly distressing.
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But thankfully, the positive responses
have been a lot more numerous,
have been a lot more numerous,
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and they came from guys who were curious.
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And they were curious
about the risks of transmission,
about the risks of transmission,
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or what exactly "undetectable" meant,
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or where they could get tested,
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or some guys would ask me
about my experiences,
about my experiences,
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and I could share my story with them.
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But most importantly,
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I would get approached by guys
who were newly diagnosed with HIV
who were newly diagnosed with HIV
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and they were scared, and they were alone,
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and they didn't know
what step to take next.
what step to take next.
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They didn't want to tell their family,
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they didn't want to tell their friends
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and they felt damaged,
and they felt dirty.
and they felt dirty.
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And I did whatever I could
to immediately calm them,
to immediately calm them,
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and then I would put them in contact
with AcadianaCares,
with AcadianaCares,
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which is a wonderful resource
we have in our community
we have in our community
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for those with HIV.
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And I'd put them in contact
with people I knew personally
with people I knew personally
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so that they could not only
have this safe space to feel human again,
have this safe space to feel human again,
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but so they could also have
the resources they needed
the resources they needed
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in affording their treatment.
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And this was by far
the most humbling aspect
the most humbling aspect
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of my transparency,
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14:49
that I could have some positive impact
on those who were suffering like I did,
on those who were suffering like I did,
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that I could help those
who were in the dark,
who were in the dark,
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because I had been there,
and it wasn't a good place to be.
and it wasn't a good place to be.
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These guys came from
all different backgrounds,
all different backgrounds,
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and many of them
weren't as informed as I had been,
weren't as informed as I had been,
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and they were coming to me
from a place of fear.
from a place of fear.
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Some of these people I knew personally,
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or they knew of me,
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but many more, they were anonymous.
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They were these blank profiles
who were too afraid to show their faces
who were too afraid to show their faces
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after what they had told me.
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And on the topic of transparency,
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I want to leave y'all with a few thoughts.
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I found that with whatever risk
or gamble I took
or gamble I took
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in putting my face out there,
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it was well worth any negative comment,
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any flak I received,
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because I felt I was able to make
this real and this tangible impact.
this real and this tangible impact.
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And it showed me that our efforts resound,
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that we can alter the lives
that we encounter for the good,
that we encounter for the good,
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and they in turn can take that momentum
and push it even further.
and push it even further.
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And if any of you or anyone you know
is dealing with HIV,
is dealing with HIV,
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or if you want to see what resources
you have in your community,
you have in your community,
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or just educate yourself
more on the disease,
more on the disease,
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here are some wonderful national sites
that you can access
that you can access
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and you are more than welcome
to find me after this talk
to find me after this talk
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and ask me anything you'd like.
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We've all heard the phrase
"to see the forest through the trees,"
"to see the forest through the trees,"
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so I implore all of you here to really
see the human through the disease.
see the human through the disease.
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It's a very easy thing
to see numbers and statistics
to see numbers and statistics
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16:25
and only see the perceived dangers.
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16:28
It's a much harder thing to see
all the faces behind those numbers.
all the faces behind those numbers.
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So when you find yourself
thinking those things, those words,
thinking those things, those words,
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what you might have thought
looking at David Kirby,
looking at David Kirby,
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I ask you instead,
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think son,
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or think brother,
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think friend
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and most importantly, think human.
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Seek education when faced with ignorance,
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and always be mindful,
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and always be compassionate.
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Arik Hartmann - NaturalistArik Hartmann is tackling the ignorance and misinformation surrounding HIV/AIDS.
Why you should listen
Arik Hartmann was diagnosed with HIV in 2014 at his college campus clinic after a bout of flu-like illness. After disclosing his HIV status to roommates, he was faced with increasing ostracization and ultimately was asked to leave the home he had been renting. From that moment he decided to always be open about his HIV status and to use it open a dialogue and educate others. He began tackling the ignorance and misinformation surrounding HIV/AIDS within his local community in Louisiana, and more surprisingly in the gay community. Using dating apps like Grindr and Tinder as a medium for HIV advocacy, he began to educate strangers about HIV/AIDS and to help those newly diagnosed acquire treatment and care. Hartmann believes that by being transparent with our illnesses and health we can all engage and educate those around us -- and hopefully dispel damaging stigmas.
Though his advocacy is HIV oriented, Hartmann is a passionate naturalist and can be found catching snakes and frogs in his free time. He has worked with the United States Geological Survey assisting in coastal ecology and herpetological research. He received his undergraduate degree in Resource Biology and Biodiversity from the University of Louisiana at Lafayette. He currently lives in Gainesville, Florida and plans to pursue a master's degree in wildlife ecology.
Arik Hartmann | Speaker | TED.com