Our treatment of HIV has advanced. Why hasn't the stigma changed?
-
0:01 - 0:05So I want to start this talk
by showing y'all a photo, -
0:05 - 0:07and it's a photo many of you
have probably seen before. -
0:08 - 0:11So I want you all to take a moment
-
0:11 - 0:13and look at this photo,
-
0:13 - 0:16and really reflect on some
of the things that come to mind, -
0:16 - 0:18and what are some
of those things, those words. -
0:20 - 0:23Now, I'm going to ask you all
to look at me. -
0:24 - 0:27What words come to mind
when you look at me? -
0:29 - 0:31What separates that man up there
-
0:31 - 0:33from me?
-
0:35 - 0:37The man in that photo is named David Kirby
-
0:37 - 0:40and it was taken in 1990
as he was dying from AIDS-related illness, -
0:40 - 0:43and it was subsequently
published in "Life Magazine." -
0:44 - 0:48The only real thing
separating me from Kirby -
0:48 - 0:52is about 30 years of medical advancements
in the way that we treat HIV and AIDS. -
0:53 - 0:57So what I want to ask next is this:
-
0:58 - 1:01If we have made such exponential progress
-
1:01 - 1:03in combatting HIV,
-
1:03 - 1:07why haven't our perceptions
of those with the virus evolved alongside? -
1:08 - 1:13Why does HIV elicit this reaction from us
when it's so easily managed? -
1:14 - 1:17When did the stigmatization even occur,
-
1:17 - 1:19and why hasn't it subsided?
-
1:21 - 1:24And these are not
easy questions to answer. -
1:24 - 1:28They're the congealing
of so many different factors and ideas. -
1:28 - 1:30Powerful images, like this one of Kirby,
-
1:30 - 1:34these were the faces of the AIDS crisis
in the '80s and '90s, -
1:34 - 1:37and at the time the crisis
had a very obvious impact -
1:37 - 1:39on an already stigmatized group of people,
-
1:39 - 1:40and that was gay men.
-
1:41 - 1:45So what the general straight public saw
was this very awful thing -
1:45 - 1:49happening to a group of people who
were already on the fringes of society. -
1:50 - 1:53The media at the time began
to use the two almost interchangeably -- -
1:54 - 1:55gay and AIDS --
-
1:55 - 1:58and at the 1984
Republican National Convention, -
1:58 - 2:03one of the speakers joked
that gay stood for: "Got AIDS yet?" -
2:04 - 2:06And that was the mindset at the time.
-
2:07 - 2:09But as we started
to understand the virus more -
2:09 - 2:11and how it was transmitted,
-
2:11 - 2:14we realized that that risk
had increased its territory. -
2:15 - 2:19The highly profiled case
of Ryan White in 1985, -
2:19 - 2:21who was a 13-year-old hemophiliac
-
2:21 - 2:25who had contracted HIV
from a contaminated blood treatment, -
2:25 - 2:30and this marked the most profound shift
in America's perception of HIV. -
2:30 - 2:34No longer was it restricted
to these dark corners of society, -
2:34 - 2:36to queers and drug users,
-
2:36 - 2:38but now it was affecting people
-
2:38 - 2:41that society deemed
worthy of their empathy, -
2:41 - 2:42to children.
-
2:42 - 2:48But that permeating fear
and that perception, it still lingers. -
2:48 - 2:51And I want a show of hands
for these next few questions. -
2:51 - 2:55How many of you in here
were aware that with treatment, -
2:55 - 2:58those with HIV not only
fend off AIDS completely, -
2:58 - 3:00but they live full and normal lives?
-
3:02 - 3:04Y'all are educated.
-
3:04 - 3:05(Laughter)
-
3:05 - 3:07How many of you are aware
that with treatment, -
3:07 - 3:11those with HIV can reach
an undetectable status, -
3:11 - 3:13and that makes them
virtually uninfectious? -
3:15 - 3:16Much less.
-
3:17 - 3:21How many of you were aware
of the pre- and postexposure treatments -
3:21 - 3:24that are available
that reduce the risk of transmission -
3:24 - 3:25by over 90 percent?
-
3:27 - 3:32See, these are incredible advancements
that we have made in fighting HIV, -
3:32 - 3:35yet they have not managed
to dent the perception -
3:35 - 3:38that most Americans have
of the virus and those living with it. -
3:39 - 3:44And I don't want you to think
I'm downplaying the danger of this virus, -
3:44 - 3:48and I am not ignorant of
the harrowing past of the AIDS epidemic. -
3:49 - 3:52I am trying to convey
that there is hope for those infected -
3:52 - 3:55and HIV is not the death sentence
it was in the '80s. -
3:56 - 4:00And now you may ask, and I asked
this question myself initially: -
4:00 - 4:01Where are the stories?
-
4:01 - 4:05Where are these people living with HIV?
Why haven't they been vocal? -
4:05 - 4:09How can I believe these successes,
or these statistics, -
4:09 - 4:12without seeing the successes?
-
4:12 - 4:16And this is actually
a very easy question for me to answer. -
4:17 - 4:20Fear, stigma and shame:
-
4:20 - 4:24these keep those living with HIV
in the closet, so to speak. -
4:24 - 4:28Our sexual histories are as personal
to us as our medical histories, -
4:28 - 4:30and when you overlap the two,
-
4:30 - 4:32you can find yourself
in a very sensitive space. -
4:33 - 4:35The fear of how others
perceive us when we're honest -
4:35 - 4:38keeps us from doing many things in life,
-
4:38 - 4:41and this is the case
for the HIV-positive population. -
4:41 - 4:47To face social scrutiny and ridicule
is the price that we pay for transparency, -
4:47 - 4:50and why become a martyr
-
4:50 - 4:53when you can effectively pass
as someone without HIV? -
4:53 - 4:57After all, there are no
physical indications you have the virus. -
4:57 - 4:58There's no sign that you wear.
-
5:00 - 5:03There is safety in assimilation,
-
5:03 - 5:05and there is safety in invisibility.
-
5:07 - 5:10I'm here to throw back that veil
and share my story. -
5:11 - 5:15So in the fall of 2014,
I was a sophomore in college -
5:15 - 5:19and like most college students,
I was sexually active, -
5:19 - 5:23and I generally took precautions
to minimize the risk that sex carries. -
5:23 - 5:27Now, I say generally,
because I wasn't always safe. -
5:27 - 5:30It only takes a single misstep
before we're flat on the ground, -
5:30 - 5:32and my misstep is pretty obvious.
-
5:32 - 5:35I had unprotected sex,
and I didn't think much of it. -
5:36 - 5:38Fast-forward about three weeks,
-
5:38 - 5:42and it felt like I'd been trampled
by a herd of wildebeest. -
5:42 - 5:46The aches in my body were
like nothing I have felt before or since. -
5:47 - 5:50I would get these bouts
of fever and chill. -
5:50 - 5:53I would reel with nausea,
and it was difficult to walk. -
5:54 - 5:58Being a biology student,
I had some prior exposure to disease, -
5:58 - 6:01and being a fairly informed gay man,
I had read a bit on HIV, -
6:01 - 6:05so to me, it clicked
that this was seroconversion, -
6:05 - 6:08or as it's sometimes called,
acute HIV infection. -
6:08 - 6:09And this is the body's reaction
-
6:09 - 6:12in producing antibodies
to the HIV antigen. -
6:13 - 6:17It's important to note that not everybody
goes through this phase of sickness, -
6:17 - 6:19but I was one of the lucky ones who did.
-
6:19 - 6:23And I was lucky as in,
there were these physical symptoms -
6:23 - 6:26that let me know, hey, something is wrong,
-
6:26 - 6:28and it let me detect
the virus pretty early. -
6:29 - 6:33So just to clarify,
just to hit the nail on head, -
6:33 - 6:35I got tested on campus.
-
6:36 - 6:40And they said they would call me
the next morning with the results, -
6:40 - 6:41and they called me,
-
6:41 - 6:44but they asked me to come in
and speak to the doctor on staff. -
6:44 - 6:49And the reaction I received from her
wasn't what I was expecting. -
6:50 - 6:54She reassured me what I already knew,
that this wasn't a death sentence, -
6:54 - 6:56and she even offered
to put me in contact with her brother, -
6:56 - 6:59who had been living with HIV
since the early '90s. -
7:00 - 7:03I declined her offer,
but I was deeply touched. -
7:03 - 7:05I was expecting to be reprimanded.
-
7:05 - 7:08I was expecting pity and disappointment,
-
7:08 - 7:12and I was shown compassion
and human warmth, -
7:12 - 7:14and I'm forever grateful
for that first exchange. -
7:16 - 7:20So obviously for a few weeks,
I was a physical mess. -
7:20 - 7:23Emotionally, mentally, I was doing OK.
-
7:23 - 7:24I was taking it well.
-
7:25 - 7:27But my body was ravaged,
-
7:27 - 7:29and those close to me,
they weren't oblivious. -
7:29 - 7:32So I sat my roommates down,
-
7:32 - 7:35and I let them know
I'd been diagnosed with HIV, -
7:35 - 7:39that I was about to receive treatment,
and I didn't want them to worry. -
7:39 - 7:42And I remember the look on their faces.
-
7:42 - 7:45They were holding each other
on the couch and they were crying, -
7:45 - 7:47and I consoled them.
-
7:47 - 7:50I consoled them about my own bad news,
-
7:50 - 7:53but it was heartwarming
to see that they cared. -
7:54 - 7:57But from that night, I noticed a shift
-
7:57 - 7:59in the way that I was treated at home.
-
7:59 - 8:01My roommates wouldn't
touch anything of mine, -
8:01 - 8:04and they wouldn't eat
anything I had cooked. -
8:04 - 8:07Now, in South Louisiana,
-
8:07 - 8:09we all know that you don't refuse food.
-
8:09 - 8:10(Laughter)
-
8:11 - 8:14And I'm a damn good cook,
so don't think that passed me by. -
8:14 - 8:16(Laughter)
-
8:16 - 8:20But from these first silent hints,
their aversion got gradually more obvious -
8:20 - 8:21and more offensive.
-
8:22 - 8:26I was asked to move my toothbrush
from the bathroom, -
8:26 - 8:29I was asked to not share towels,
-
8:29 - 8:32and I was even asked
to wash my clothes on a hotter setting. -
8:33 - 8:34This wasn't head lice, y'all.
-
8:34 - 8:37This wasn't scabies. This was HIV.
-
8:37 - 8:39It can be transmitted through blood,
-
8:39 - 8:42sexual fluids like semen or vaginal fluids
-
8:42 - 8:43and breast milk.
-
8:43 - 8:46Since I wasn't sleeping with my roommates,
-
8:46 - 8:48I wasn't breastfeeding them --
-
8:48 - 8:49(Laughter)
-
8:49 - 8:51and we weren't reenacting "Twilight,"
-
8:51 - 8:54I was of no risk to them
-
8:54 - 8:56and I made this aware to them,
-
8:56 - 8:59but still, this discomfort, it continued,
-
8:59 - 9:01until eventually I was asked to move out.
-
9:02 - 9:03And I was asked to move out
-
9:03 - 9:07because one of my roommates
had shared my status with her parents. -
9:07 - 9:12She shared my personal
medical information to strangers. -
9:13 - 9:17And now I'm doing that
in a roomful of 300 of y'all, -
9:17 - 9:20but at the time, this was not
something I was comfortable with, -
9:20 - 9:24and they expressed their discomfort
with their daughter living with me. -
9:25 - 9:28So being gay, raised
in a religious household -
9:28 - 9:29and living in the South,
-
9:29 - 9:31discrimination wasn't new to me.
-
9:32 - 9:34But this form was,
-
9:34 - 9:36and it was tremendously disappointing
-
9:36 - 9:39because it came
from such an unlikely source. -
9:40 - 9:44Not only were these
college-educated people, -
9:44 - 9:47not only were they other members
of the LGBT community, -
9:47 - 9:49but they were also my friends.
-
9:50 - 9:54So I did. I moved out
at the end of the semester. -
9:54 - 9:56But it wasn't to appease them.
-
9:56 - 9:58It was out of respect for myself.
-
9:58 - 10:01I wasn't going to subject myself to people
-
10:01 - 10:04who were unwilling
to remedy their ignorance, -
10:04 - 10:07and I wasn't going to let something
that was now a part of me -
10:07 - 10:09ever be used as a tool against me.
-
10:09 - 10:13So I opted for transparency
about my status, -
10:13 - 10:15always being visible.
-
10:16 - 10:19And this is what I like to call
being the everyday advocate. -
10:19 - 10:23The point of this transparency,
the point of this everyday advocacy, -
10:23 - 10:25was to dispel ignorance,
-
10:25 - 10:28and ignorance is a very scary word.
-
10:28 - 10:31We don't want to be seen as ignorant,
-
10:31 - 10:33and we definitely
don't want to be called it. -
10:34 - 10:37But ignorance is not
synonymous with stupid. -
10:37 - 10:39It's not the inability to learn.
-
10:39 - 10:42It's the state you're in before you learn.
-
10:42 - 10:45So when I saw someone
coming from a place of ignorance, -
10:45 - 10:49I saw an opportunity for them to learn.
-
10:49 - 10:52And hopefully, if I could
spread some education, -
10:52 - 10:54then I could mitigate
situations for others -
10:54 - 10:56like I had experienced with my roommates
-
10:56 - 10:59and save someone else
down the line that humiliation. -
11:01 - 11:04So the reactions I received
haven't been all positive. -
11:05 - 11:07Here in the South,
-
11:07 - 11:10we have a lot stigma
due to religious pressures, -
11:10 - 11:13our lack of a comprehensive sex education
-
11:13 - 11:17and our general conservative outlook
on anything sexual. -
11:17 - 11:19We view this as a gay disease.
-
11:20 - 11:24Globally, most new HIV infections
occur between heterosexual partners, -
11:24 - 11:27and here in the States,
women, especially women of color, -
11:27 - 11:28are at an increased risk.
-
11:29 - 11:32This is not a gay disease.
It never has been. -
11:32 - 11:34It's a disease we should
all be concerned with. -
11:35 - 11:39So initially, I felt limited.
-
11:39 - 11:43I wanted to expand my scope
and reach beyond what was around me. -
11:44 - 11:46So naturally,
-
11:46 - 11:50I turned to the dark underworld
of online dating apps, -
11:50 - 11:52to apps like Grindr,
-
11:52 - 11:54and for those of you who are unfamiliar,
-
11:54 - 11:56these are dating apps
targeted towards gay men. -
11:56 - 11:58You can upload a profile and a picture
-
11:58 - 12:01and it will show you
available guys within a radius. -
12:01 - 12:03Y'all have probably heard of Tinder.
-
12:03 - 12:05Grindr has been around for a lot longer,
-
12:05 - 12:08since it was much harder
to meet your future gay husband -
12:08 - 12:11at church or the grocery store,
-
12:11 - 12:12or whatever straight people did
-
12:12 - 12:15before they found out
they could date on their phones. -
12:15 - 12:16(Laughter)
-
12:16 - 12:19So on Grindr, if you liked
what you saw or read, -
12:19 - 12:23you could send someone a message,
you can meet up, you can do other things. -
12:23 - 12:28So on my profile,
I obviously stated that I had HIV, -
12:28 - 12:32I was undetectable, and I welcomed
questions about my status. -
12:32 - 12:34And I received a lot of questions
-
12:34 - 12:37and a lot of comments,
both positive and negative. -
12:37 - 12:40And I want to start with the negative,
-
12:40 - 12:43just to frame some of this ignorance
that I've mentioned before. -
12:44 - 12:49And most of these negative comments
were passing remarks or assumptions. -
12:49 - 12:52They would assume things
about my sex life or my sex habits. -
12:52 - 12:55They would assume
I put myself or others at risk. -
12:55 - 12:59But very often I would just be met
with these passing ignorant remarks. -
13:00 - 13:04In the gay community,
it's common to hear the word "clean" -
13:04 - 13:07when you're referring to someone
who is HIV negative. -
13:07 - 13:10Of course the flip side to that
is being unclean, or dirty, -
13:10 - 13:12when you do have HIV.
-
13:12 - 13:13Now, I'm not sensitive
-
13:13 - 13:16and I'm only truly dirty
after a day in the field, -
13:17 - 13:19but this is damaging language.
-
13:19 - 13:21This is a community-driven stigma
-
13:22 - 13:25that keeps many gay men
from disclosing their status, -
13:25 - 13:26and it keeps those newly diagnosed
-
13:26 - 13:29from seeking support
within their own community, -
13:29 - 13:31and I find that truly distressing.
-
13:31 - 13:35But thankfully, the positive responses
have been a lot more numerous, -
13:35 - 13:38and they came from guys who were curious.
-
13:38 - 13:41And they were curious
about the risks of transmission, -
13:41 - 13:43or what exactly "undetectable" meant,
-
13:43 - 13:45or where they could get tested,
-
13:45 - 13:47or some guys would ask me
about my experiences, -
13:47 - 13:49and I could share my story with them.
-
13:50 - 13:52But most importantly,
-
13:52 - 13:56I would get approached by guys
who were newly diagnosed with HIV -
13:56 - 13:59and they were scared, and they were alone,
-
13:59 - 14:01and they didn't know
what step to take next. -
14:02 - 14:04They didn't want to tell their family,
-
14:04 - 14:05they didn't want to tell their friends
-
14:06 - 14:08and they felt damaged,
and they felt dirty. -
14:09 - 14:13And I did whatever I could
to immediately calm them, -
14:13 - 14:15and then I would put them in contact
with AcadianaCares, -
14:15 - 14:19which is a wonderful resource
we have in our community -
14:19 - 14:20for those with HIV.
-
14:20 - 14:23And I'd put them in contact
with people I knew personally -
14:23 - 14:28so that they could not only
have this safe space to feel human again, -
14:28 - 14:30but so they could also have
the resources they needed -
14:30 - 14:32in affording their treatment.
-
14:32 - 14:35And this was by far
the most humbling aspect -
14:35 - 14:37of my transparency,
-
14:37 - 14:43that I could have some positive impact
on those who were suffering like I did, -
14:43 - 14:45that I could help those
who were in the dark, -
14:45 - 14:48because I had been there,
and it wasn't a good place to be. -
14:49 - 14:52These guys came from
all different backgrounds, -
14:52 - 14:54and many of them
weren't as informed as I had been, -
14:54 - 14:57and they were coming to me
from a place of fear. -
14:58 - 15:00Some of these people I knew personally,
-
15:00 - 15:01or they knew of me,
-
15:01 - 15:04but many more, they were anonymous.
-
15:04 - 15:07They were these blank profiles
who were too afraid to show their faces -
15:07 - 15:09after what they had told me.
-
15:09 - 15:12And on the topic of transparency,
-
15:12 - 15:14I want to leave y'all with a few thoughts.
-
15:15 - 15:18I found that with whatever risk
or gamble I took -
15:18 - 15:20in putting my face out there,
-
15:20 - 15:22it was well worth any negative comment,
-
15:22 - 15:24any flak I received,
-
15:25 - 15:28because I felt I was able to make
this real and this tangible impact. -
15:29 - 15:33And it showed me that our efforts resound,
-
15:33 - 15:36that we can alter the lives
that we encounter for the good, -
15:36 - 15:39and they in turn can take that momentum
and push it even further. -
15:40 - 15:44And if any of you or anyone you know
is dealing with HIV, -
15:44 - 15:47or if you want to see what resources
you have in your community, -
15:47 - 15:50or just educate yourself
more on the disease, -
15:51 - 15:54here are some wonderful national sites
that you can access -
15:54 - 15:57and you are more than welcome
to find me after this talk -
15:57 - 15:58and ask me anything you'd like.
-
15:59 - 16:03We've all heard the phrase
"to see the forest through the trees," -
16:04 - 16:08so I implore all of you here to really
see the human through the disease. -
16:09 - 16:13It's a very easy thing
to see numbers and statistics -
16:13 - 16:16and only see the perceived dangers.
-
16:16 - 16:21It's a much harder thing to see
all the faces behind those numbers. -
16:22 - 16:25So when you find yourself
thinking those things, those words, -
16:25 - 16:28what you might have thought
looking at David Kirby, -
16:29 - 16:31I ask you instead,
-
16:31 - 16:33think son,
-
16:33 - 16:35or think brother,
-
16:35 - 16:37think friend
-
16:37 - 16:40and most importantly, think human.
-
16:41 - 16:44Seek education when faced with ignorance,
-
16:44 - 16:46and always be mindful,
-
16:46 - 16:48and always be compassionate.
-
16:49 - 16:50Thank you.
-
16:50 - 16:54(Applause)
- Title:
- Our treatment of HIV has advanced. Why hasn't the stigma changed?
- Speaker:
- Arik Hartmann
- Description:
-
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.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 17:06
Brian Greene edited English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Brian Greene approved English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Brian Greene edited English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Joanna Pietrulewicz accepted English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Joanna Pietrulewicz edited English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Joanna Pietrulewicz edited English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? | ||
Joseph Geni edited English subtitles for Our treatment of HIV has advanced. Why hasn't the stigma changed? |