Our treatment of HIV has advanced. Why hasn't 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)