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Our treatment of HIV has advanced. Why hasn't the stigma changed?

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    So I want to start this talk
    by showing y'all a photo,
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    and it's a photo many of you
    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,
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    and what are some
    of those things, those words.
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    Now, I'm going to ask you all
    to look at me.
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    What words come to mind
    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,
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    and it was subsequently
    published in "Life Magazine."
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    The only real thing
    separating me from Kirby
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    is about 30 years of medical advancements
    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?
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    Why does HIV elicit this reaction from us
    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.
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    They're the congealing
    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,
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    and at the time the crisis
    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
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    happening to a group of people who
    were already on the fringes of society.
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    The media at the time began
    to use the two almost interchangeably --
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    gay and AIDS --
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    and at the 1984
    Republican National Convention,
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    one of the speakers joked
    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
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    and how it was transmitted,
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    we realized that that risk
    had increased its territory.
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    The highly profiled case
    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,
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    and this marked the most profound shift
    in America's perception of HIV.
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    No longer was it restricted
    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,
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    to children.
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    But that permeating fear
    and that perception, it still lingers.
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    And I want a show of hands
    for these next few questions.
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    How many of you in here
    were aware that with treatment,
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    those with HIV not only
    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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    (Laughter)
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    How many of you are aware
    that with treatment,
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    those with HIV can reach
    an undetectable status,
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    and that makes them
    virtually uninfectious?
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    Much less.
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    How many of you were aware
    of the pre- and postexposure treatments
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    that are available
    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,
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    yet they have not managed
    to dent the perception
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    that most Americans have
    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,
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    and I am not ignorant of
    the harrowing past of the AIDS epidemic.
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    I am trying to convey
    that there is hope for those infected
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    and HIV is not the death sentence
    it was in the '80s.
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    And now you may ask, and I asked
    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?
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    How can I believe these successes,
    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.
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    Fear, stigma and shame:
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    these keep those living with HIV
    in the closet, so to speak.
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    Our sexual histories are as personal
    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.
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    The fear of how others
    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.
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    To face social scrutiny and ridicule
    is the price that we pay for transparency,
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    and why become a martyr
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    when you can effectively pass
    as someone without HIV?
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    After all, there are no
    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.
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    So in the fall of 2014,
    I was a sophomore in college
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    and like most college students,
    I was sexually active,
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    and I generally took precautions
    to minimize the risk that sex carries.
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    Now, I say generally,
    because I wasn't always safe.
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    It only takes a single misstep
    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.
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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.
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    The aches in my body were
    like nothing I have felt before or since.
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    I would get these bouts
    of fever and chill.
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    I would reel with nausea,
    and it was difficult to walk.
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    Being a biology student,
    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,
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    so to me, it clicked
    that this was seroconversion,
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    or as it's sometimes called,
    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.
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    It's important to note that not everybody
    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
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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.
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    So just to clarify,
    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,
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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.
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    And the reaction I received from her
    wasn't what I was expecting.
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    She reassured me what I already knew,
    that this wasn't a death sentence,
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    and she even offered
    to put me in contact with her brother,
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    who had been living with HIV
    since the early '90s.
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    I declined her offer,
    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,
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    and I'm forever grateful
    for that first exchange.
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    So obviously for a few weeks,
    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.
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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,
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    that I was about to receive treatment,
    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,
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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.
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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,
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    and they wouldn't eat
    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.
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    (Laughter)
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    But from these first silent hints,
    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,
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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.
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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.
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    She shared my personal
    medical information to strangers.
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    And now I'm doing that
    in a roomful of 300 of y'all,
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    but at the time, this was not
    something I was comfortable with,
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    and they expressed their discomfort
    with their daughter living with me.
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    So being gay, raised
    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.
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    Not only were these
    college-educated people,
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    not only were they other members
    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.
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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,
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    and I wasn't going to let something
    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,
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    always being visible.
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    And this is what I like to call
    being the everyday advocate.
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    The point of this transparency,
    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.
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    But ignorance is not
    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,
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    I saw an opportunity for them to learn.
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    And hopefully, if I could
    spread some education,
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    then I could mitigate
    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.
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    So the reactions I received
    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,
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    our lack of a comprehensive sex education
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    and our general conservative outlook
    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,
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    and here in the States,
    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.
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    It's a disease we should
    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.
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    So naturally,
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    I turned to the dark underworld
    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.
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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.
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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
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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.
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    (Laughter)
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    So on Grindr, if you liked
    what you saw or read,
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    you could send someone a message,
    you can meet up, you can do other things.
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    So on my profile,
    I obviously stated that I had HIV,
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    I was undetectable, and I welcomed
    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.
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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.
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    And most of these negative comments
    were passing remarks or assumptions.
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    They would assume things
    about my sex life or my sex habits.
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    They would assume
    I put myself or others at risk.
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    But very often I would just be met
    with these passing ignorant remarks.
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    In the gay community,
    it's common to hear the word "clean"
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    when you're referring to someone
    who is HIV negative.
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    Of course the flip side to that
    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,
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    but this is damaging language.
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    This is a community-driven stigma
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    that keeps many gay men
    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,
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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,
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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,
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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,
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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
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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.
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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.
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    And I did whatever I could
    to immediately calm them,
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    and then I would put them in contact
    with AcadianaCares,
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    which is a wonderful resource
    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
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    so that they could not only
    have this safe space to feel human again,
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    but so they could also have
    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
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    of my transparency,
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    that I could have some positive impact
    on those who were suffering like I did,
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    that I could help those
    who were in the dark,
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    because I had been there,
    and it wasn't a good place to be.
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    These guys came from
    all different backgrounds,
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    and many of them
    weren't as informed as I had been,
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    and they were coming to me
    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
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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
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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.
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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,
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    and they in turn can take that momentum
    and push it even further.
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    And if any of you or anyone you know
    is dealing with HIV,
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    or if you want to see what resources
    you have in your community,
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    or just educate yourself
    more on the disease,
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    here are some wonderful national sites
    that you can access
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    and you are more than welcome
    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,"
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    so I implore all of you here to really
    see the human through the disease.
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    It's a very easy thing
    to see numbers and statistics
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    and only see the perceived dangers.
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    It's a much harder thing to see
    all the faces behind those numbers.
  • 16:22 - 16:25
    So when you find yourself
    thinking those things, those words,
  • 16:25 - 16:28
    what you might have thought
    looking at David Kirby,
  • 16:29 - 16:31
    I ask you instead,
  • 16:31 - 16:33
    think son,
  • 16:33 - 16:35
    or think brother,
  • 16:35 - 16:37
    think friend
  • 16:37 - 16:40
    and most importantly, think human.
  • 16:41 - 16:44
    Seek education when faced with ignorance,
  • 16:44 - 16:46
    and always be mindful,
  • 16:46 - 16:48
    and always be compassionate.
  • 16:49 - 16:50
    Thank you.
  • 16:50 - 16:54
    (Applause)
タイトル:
Our treatment of HIV has advanced. Why hasn't the stigma changed?
話者:
Arik Hartmann
概説:

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Video Language:
English
Team:
TED
プロジェクト:
TEDTalks
Duration:
17:06

English subtitles

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