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

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Showing Revision 5 created 01/04/2018 by Brian Greene.

  1. So I want to start this talk
    by showing y'all a photo,
  2. and it's a photo many of you
    have probably seen before.
  3. So I want you all to take a moment
  4. and look at this photo,
  5. and really reflect on some
    of the things that come to mind,
  6. and what are some
    of those things, those words.
  7. Now, I'm going to ask you all
    to look at me.
  8. What words come to mind
    when you look at me?
  9. What separates that man up there
  10. from me?
  11. The man in that photo is named David Kirby

  12. and it was taken in 1990
    as he was dying from AIDS-related illness,
  13. and it was subsequently
    published in "Life Magazine."
  14. The only real thing
    separating me from Kirby
  15. is about 30 years of medical advancements
    in the way that we treat HIV and AIDS.
  16. So what I want to ask next is this:

  17. If we have made such exponential progress
  18. in combatting HIV,
  19. why haven't our perceptions
    of those with the virus evolved alongside?
  20. Why does HIV elicit this reaction from us
    when it's so easily managed?
  21. When did the stigmatization even occur,
  22. and why hasn't it subsided?
  23. And these are not
    easy questions to answer.
  24. They're the congealing
    of so many different factors and ideas.
  25. Powerful images, like this one of Kirby,
  26. these were the faces of the AIDS crisis
    in the '80s and '90s,
  27. and at the time the crisis
    had a very obvious impact
  28. on an already stigmatized group of people,
  29. and that was gay men.
  30. So what the general straight public saw
    was this very awful thing
  31. happening to a group of people who
    were already on the fringes of society.
  32. The media at the time began
    to use the two almost interchangeably --
  33. gay and AIDS --
  34. and at the 1984
    Republican National Convention,
  35. one of the speakers joked
    that gay stood for: "Got AIDS yet?"
  36. And that was the mindset at the time.
  37. But as we started
    to understand the virus more

  38. and how it was transmitted,
  39. we realized that that risk
    had increased its territory.
  40. The highly profiled case
    of Ryan White in 1985,
  41. who was a 13-year-old hemophiliac
  42. who had contracted HIV
    from a contaminated blood treatment,
  43. and this marked the most profound shift
    in America's perception of HIV.
  44. No longer was it restricted
    to these dark corners of society,
  45. to queers and drug users,
  46. but now it was affecting people
  47. that society deemed
    worthy of their empathy,
  48. to children.
  49. But that permeating fear
    and that perception, it still lingers.

  50. And I want a show of hands
    for these next few questions.
  51. How many of you in here
    were aware that with treatment,

  52. those with HIV not only
    fend off AIDS completely,
  53. but they live full and normal lives?
  54. Y'all are educated.
  55. (Laughter)

  56. How many of you are aware
    that with treatment,

  57. those with HIV can reach
    an undetectable status,
  58. and that makes them
    virtually uninfectious?
  59. Much less.
  60. How many of you were aware
    of the pre- and postexposure treatments
  61. that are available
    that reduce the risk of transmission
  62. by over 90 percent?
  63. See, these are incredible advancements
    that we have made in fighting HIV,

  64. yet they have not managed
    to dent the perception
  65. that most Americans have
    of the virus and those living with it.
  66. And I don't want you to think
    I'm downplaying the danger of this virus,
  67. and I am not ignorant of
    the harrowing past of the AIDS epidemic.
  68. I am trying to convey
    that there is hope for those infected
  69. and HIV is not the death sentence
    it was in the '80s.
  70. And now you may ask, and I asked
    this question myself initially:

  71. Where are the stories?
  72. Where are these people living with HIV?
    Why haven't they been vocal?
  73. How can I believe these successes,
    or these statistics,
  74. without seeing the successes?
  75. And this is actually
    a very easy question for me to answer.
  76. Fear, stigma and shame:
  77. these keep those living with HIV
    in the closet, so to speak.
  78. Our sexual histories are as personal
    to us as our medical histories,
  79. and when you overlap the two,
  80. you can find yourself
    in a very sensitive space.
  81. The fear of how others
    perceive us when we're honest
  82. keeps us from doing many things in life,
  83. and this is the case
    for the HIV-positive population.
  84. To face social scrutiny and ridicule
    is the price that we pay for transparency,
  85. and why become a martyr
  86. when you can effectively pass
    as someone without HIV?
  87. After all, there are no
    physical indications you have the virus.
  88. There's no sign that you wear.
  89. There is safety in assimilation,
  90. and there is safety in invisibility.
  91. I'm here to throw back that veil
    and share my story.
  92. So in the fall of 2014,
    I was a sophomore in college

  93. and like most college students,
    I was sexually active,
  94. and I generally took precautions
    to minimize the risk that sex carries.
  95. Now, I say generally,
    because I wasn't always safe.
  96. It only takes a single misstep
    before we're flat on the ground,
  97. and my misstep is pretty obvious.
  98. I had unprotected sex,
    and I didn't think much of it.
  99. Fast-forward about three weeks,
  100. and it felt like I'd been trampled
    by a herd of wildebeest.
  101. The aches in my body were
    like nothing I have felt before or since.
  102. I would get these bouts
    of fever and chill.
  103. I would reel with nausea,
    and it was difficult to walk.
  104. Being a biology student,
    I had some prior exposure to disease,
  105. and being a fairly informed gay man,
    I had read a bit on HIV,
  106. so to me, it clicked
    that this was seroconversion,
  107. or as it's sometimes called,
    acute HIV infection.
  108. And this is the body's reaction
  109. in producing antibodies
    to the HIV antigen.
  110. It's important to note that not everybody
    goes through this phase of sickness,
  111. but I was one of the lucky ones who did.
  112. And I was lucky as in,
    there were these physical symptoms
  113. that let me know, hey, something is wrong,
  114. and it let me detect
    the virus pretty early.
  115. So just to clarify,
    just to hit the nail on head,

  116. I got tested on campus.
  117. And they said they would call me
    the next morning with the results,
  118. and they called me,
  119. but they asked me to come in
    and speak to the doctor on staff.
  120. And the reaction I received from her
    wasn't what I was expecting.
  121. She reassured me what I already knew,
    that this wasn't a death sentence,
  122. and she even offered
    to put me in contact with her brother,
  123. who had been living with HIV
    since the early '90s.
  124. I declined her offer,
    but I was deeply touched.
  125. I was expecting to be reprimanded.
  126. I was expecting pity and disappointment,
  127. and I was shown compassion
    and human warmth,
  128. and I'm forever grateful
    for that first exchange.
  129. So obviously for a few weeks,
    I was a physical mess.

  130. Emotionally, mentally, I was doing OK.
  131. I was taking it well.
  132. But my body was ravaged,
  133. and those close to me,
    they weren't oblivious.
  134. So I sat my roommates down,
  135. and I let them know
    I'd been diagnosed with HIV,
  136. that I was about to receive treatment,
    and I didn't want them to worry.
  137. And I remember the look on their faces.
  138. They were holding each other
    on the couch and they were crying,
  139. and I consoled them.
  140. I consoled them about my own bad news,
  141. but it was heartwarming
    to see that they cared.
  142. But from that night, I noticed a shift
  143. in the way that I was treated at home.
  144. My roommates wouldn't
    touch anything of mine,
  145. and they wouldn't eat
    anything I had cooked.
  146. Now, in South Louisiana,
  147. we all know that you don't refuse food.
  148. (Laughter)

  149. And I'm a damn good cook,
    so don't think that passed me by.

  150. (Laughter)

  151. But from these first silent hints,
    their aversion got gradually more obvious

  152. and more offensive.
  153. I was asked to move my toothbrush
    from the bathroom,
  154. I was asked to not share towels,
  155. and I was even asked
    to wash my clothes on a hotter setting.
  156. This wasn't head lice, y'all.
  157. This wasn't scabies. This was HIV.
  158. It can be transmitted through blood,
  159. sexual fluids like semen or vaginal fluids
  160. and breast milk.
  161. Since I wasn't sleeping with my roommates,
  162. I wasn't breastfeeding them --
  163. (Laughter)

  164. and we weren't reenacting "Twilight,"

  165. I was of no risk to them
  166. and I made this aware to them,
  167. but still, this discomfort, it continued,
  168. until eventually I was asked to move out.
  169. And I was asked to move out
  170. because one of my roommates
    had shared my status with her parents.
  171. She shared my personal
    medical information to strangers.
  172. And now I'm doing that
    in a roomful of 300 of y'all,
  173. but at the time, this was not
    something I was comfortable with,
  174. and they expressed their discomfort
    with their daughter living with me.
  175. So being gay, raised
    in a religious household

  176. and living in the South,
  177. discrimination wasn't new to me.
  178. But this form was,
  179. and it was tremendously disappointing
  180. because it came
    from such an unlikely source.
  181. Not only were these
    college-educated people,
  182. not only were they other members
    of the LGBT community,
  183. but they were also my friends.
  184. So I did. I moved out
    at the end of the semester.
  185. But it wasn't to appease them.
  186. It was out of respect for myself.
  187. I wasn't going to subject myself to people
  188. who were unwilling
    to remedy their ignorance,
  189. and I wasn't going to let something
    that was now a part of me
  190. ever be used as a tool against me.
  191. So I opted for transparency
    about my status,

  192. always being visible.
  193. And this is what I like to call
    being the everyday advocate.
  194. The point of this transparency,
    the point of this everyday advocacy,
  195. was to dispel ignorance,
  196. and ignorance is a very scary word.
  197. We don't want to be seen as ignorant,
  198. and we definitely
    don't want to be called it.
  199. But ignorance is not
    synonymous with stupid.
  200. It's not the inability to learn.
  201. It's the state you're in before you learn.
  202. So when I saw someone
    coming from a place of ignorance,
  203. I saw an opportunity for them to learn.
  204. And hopefully, if I could
    spread some education,
  205. then I could mitigate
    situations for others
  206. like I had experienced with my roommates
  207. and save someone else
    down the line that humiliation.
  208. So the reactions I received
    haven't been all positive.

  209. Here in the South,
  210. we have a lot stigma
    due to religious pressures,
  211. our lack of a comprehensive sex education
  212. and our general conservative outlook
    on anything sexual.
  213. We view this as a gay disease.
  214. Globally, most new HIV infections
    occur between heterosexual partners,
  215. and here in the States,
    women, especially women of color,
  216. are at an increased risk.
  217. This is not a gay disease.
    It never has been.
  218. It's a disease we should
    all be concerned with.
  219. So initially, I felt limited.

  220. I wanted to expand my scope
    and reach beyond what was around me.
  221. So naturally,
  222. I turned to the dark underworld
    of online dating apps,
  223. to apps like Grindr,
  224. and for those of you who are unfamiliar,
  225. these are dating apps
    targeted towards gay men.
  226. You can upload a profile and a picture
  227. and it will show you
    available guys within a radius.
  228. Y'all have probably heard of Tinder.
  229. Grindr has been around for a lot longer,
  230. since it was much harder
    to meet your future gay husband
  231. at church or the grocery store,
  232. or whatever straight people did
  233. before they found out
    they could date on their phones.
  234. (Laughter)

  235. So on Grindr, if you liked
    what you saw or read,

  236. you could send someone a message,
    you can meet up, you can do other things.
  237. So on my profile,
    I obviously stated that I had HIV,

  238. I was undetectable, and I welcomed
    questions about my status.
  239. And I received a lot of questions
  240. and a lot of comments,
    both positive and negative.
  241. And I want to start with the negative,
  242. just to frame some of this ignorance
    that I've mentioned before.
  243. And most of these negative comments
    were passing remarks or assumptions.
  244. They would assume things
    about my sex life or my sex habits.
  245. They would assume
    I put myself or others at risk.
  246. But very often I would just be met
    with these passing ignorant remarks.
  247. In the gay community,
    it's common to hear the word "clean"
  248. when you're referring to someone
    who is HIV negative.
  249. Of course the flip side to that
    is being unclean, or dirty,
  250. when you do have HIV.
  251. Now, I'm not sensitive
  252. and I'm only truly dirty
    after a day in the field,
  253. but this is damaging language.
  254. This is a community-driven stigma
  255. that keeps many gay men
    from disclosing their status,
  256. and it keeps those newly diagnosed
  257. from seeking support
    within their own community,
  258. and I find that truly distressing.
  259. But thankfully, the positive responses
    have been a lot more numerous,
  260. and they came from guys who were curious.
  261. And they were curious
    about the risks of transmission,
  262. or what exactly "undetectable" meant,
  263. or where they could get tested,
  264. or some guys would ask me
    about my experiences,
  265. and I could share my story with them.
  266. But most importantly,

  267. I would get approached by guys
    who were newly diagnosed with HIV
  268. and they were scared, and they were alone,
  269. and they didn't know
    what step to take next.
  270. They didn't want to tell their family,
  271. they didn't want to tell their friends
  272. and they felt damaged,
    and they felt dirty.
  273. And I did whatever I could
    to immediately calm them,
  274. and then I would put them in contact
    with AcadianaCares,
  275. which is a wonderful resource
    we have in our community
  276. for those with HIV.
  277. And I'd put them in contact
    with people I knew personally
  278. so that they could not only
    have this safe space to feel human again,
  279. but so they could also have
    the resources they needed
  280. in affording their treatment.
  281. And this was by far
    the most humbling aspect
  282. of my transparency,
  283. that I could have some positive impact
    on those who were suffering like I did,
  284. that I could help those
    who were in the dark,
  285. because I had been there,
    and it wasn't a good place to be.
  286. These guys came from
    all different backgrounds,
  287. and many of them
    weren't as informed as I had been,
  288. and they were coming to me
    from a place of fear.
  289. Some of these people I knew personally,
  290. or they knew of me,
  291. but many more, they were anonymous.
  292. They were these blank profiles
    who were too afraid to show their faces
  293. after what they had told me.
  294. And on the topic of transparency,

  295. I want to leave y'all with a few thoughts.
  296. I found that with whatever risk
    or gamble I took
  297. in putting my face out there,
  298. it was well worth any negative comment,
  299. any flak I received,
  300. because I felt I was able to make
    this real and this tangible impact.
  301. And it showed me that our efforts resound,
  302. that we can alter the lives
    that we encounter for the good,
  303. and they in turn can take that momentum
    and push it even further.
  304. And if any of you or anyone you know
    is dealing with HIV,
  305. or if you want to see what resources
    you have in your community,
  306. or just educate yourself
    more on the disease,
  307. here are some wonderful national sites
    that you can access
  308. and you are more than welcome
    to find me after this talk
  309. and ask me anything you'd like.
  310. We've all heard the phrase
    "to see the forest through the trees,"

  311. so I implore all of you here to really
    see the human through the disease.
  312. It's a very easy thing
    to see numbers and statistics
  313. and only see the perceived dangers.
  314. It's a much harder thing to see
    all the faces behind those numbers.
  315. So when you find yourself
    thinking those things, those words,
  316. what you might have thought
    looking at David Kirby,
  317. I ask you instead,
  318. think son,
  319. or think brother,
  320. think friend
  321. and most importantly, think human.
  322. Seek education when faced with ignorance,
  323. and always be mindful,
  324. and always be compassionate.
  325. Thank you.

  326. (Applause)