Our treatment of HIV has advanced. Why hasnt the stigma changed Arik Hartmann
So I want to start this talk
by showing y’all a photo,
and it’s a photo 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 combatting 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 the stigmatization even occur,
and why hasn’t it subsided?
And these are not
easy questions to answer.
They’re the congealing
of so 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
to use 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 at 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,
who 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,
to 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?
Y’all are educated.
(Laughter)
How many of you are 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 postexposure treatments
that are available
that reduce the risk of transmission
by over 90 percent?
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 is 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’d been trampled
by a herd of wildebeest.
The aches in my body were
like nothing I have 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 the lucky ones who did.
And I was lucky as in,
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 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 she even offered
to put me in contact with her brother,
who had 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 OK.
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.
They were holding each other
on the couch and they were crying,
and I consoled them.
I consoled them about my own bad news,
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 had 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 reenacting “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 roomful of 300 of y’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.
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 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.
Y’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 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 is 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 y’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 or 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)