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

114,287 views ・ 2018-01-25

TED


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00:00
So I want to start this talk by showing y'all a photo,
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譯者: Lilian Chiu 審譯者: Nan-Kun Wu
在這場演說的一開始, 我想讓各位看一張照片,
00:04
and it's a photo many of you have probably seen before.
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在座很多人可能已經看過這張照片。
00:08
So I want you all to take a moment
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我想請各位花一點點時間,
00:10
and look at this photo,
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看看這張照片,
00:12
and really reflect on some of the things that come to mind,
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然後好好深思出現在腦海中的東西,
00:16
and what are some of those things, those words.
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那些東西、那些話語,是什麼?
00:19
Now, I'm going to ask you all to look at me.
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現在,我想請各位看著我。
00:24
What words come to mind when you look at me?
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當你們看著我的時候, 想到的是什麼?
00:28
What separates that man up there
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把我和上面那個人區隔開的
00:31
from me?
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是什麼?
00:34
The man in that photo is named David Kirby
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照片中的男子名叫大衛柯比,
00:36
and it was taken in 1990 as he was dying from AIDS-related illness,
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照片是在 1990 年拍攝的, 他因為愛滋相關的疾病病危,
00:40
and it was subsequently published in "Life Magazine."
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後來照片在《生活》雜誌刊登出來。
00:43
The only real thing separating me from Kirby
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真正把我和柯比 區隔開來的東西,只有一樣,
00:47
is about 30 years of medical advancements in the way that we treat HIV and AIDS.
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就是在治療愛滋病毒和愛滋病方面, 約三十年的醫療進步。
00:53
So what I want to ask next is this:
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所以,接著我想要問:
00:58
If we have made such exponential progress
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如果在對抗愛滋病毒上我們
01:00
in combatting HIV,
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已經有這麼快速的進展,
01:02
why haven't our perceptions of those with the virus evolved alongside?
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為什麼我們對於愛滋病人的 感受沒有一併演進?
01:07
Why does HIV elicit this reaction from us when it's so easily managed?
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既然愛滋病病毒已能被簡單處理, 為什麼它還會引發這樣的反應?
01:13
When did the stigmatization even occur,
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這種汙名化是何時發生的?
01:17
and why hasn't it subsided?
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為什麼它還沒有消失?
01:20
And these are not easy questions to answer.
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要回答這些問題並不容易。
01:24
They're the congealing of so many different factors and ideas.
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它們都牽涉到許多 不同的因素和想法。
01:27
Powerful images, like this one of Kirby,
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強大的影像,像是柯比這張照片,
01:30
these were the faces of the AIDS crisis in the '80s and '90s,
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這些是在八○、九○年代 愛滋危機時的臉孔,
01:33
and at the time the crisis had a very obvious impact
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在那危機的時代,非常明顯
01:36
on an already stigmatized group of people,
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會影響到已經被汙名化的族群,
01:38
and that was gay men.
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也就是同性戀族群。
01:40
So what the general straight public saw was this very awful thing
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所以,一般的異性戀大眾看到的, 是這件非常糟的事情
01:45
happening to a group of people who were already on the fringes of society.
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發生在一個已經處在 社會邊緣的族群身上。
01:50
The media at the time began to use the two almost interchangeably --
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當時的媒體幾乎就把兩者 ──愛滋病和同性戀──
01:53
gay and AIDS --
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當作可互換使用的詞,
01:55
and at the 1984 Republican National Convention,
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在 1984 年共和黨全國代表大會上,
01:58
one of the speakers joked that gay stood for: "Got AIDS yet?"
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一位發言人開玩笑說同性戀(GAY) 代表「Got Aids Yet(得愛滋沒)?」
02:03
And that was the mindset at the time.
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那就是當時的心態。
02:06
But as we started to understand the virus more
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但隨著我們更了解這種病毒,
02:09
and how it was transmitted,
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更了解它如何傳染,
02:10
we realized that that risk had increased its territory.
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我們發現,風險的範圍擴大了。
02:15
The highly profiled case of Ryan White in 1985,
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1985 年的萊恩懷特案例非常知名,
02:19
who was a 13-year-old hemophiliac
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他是位十三歲的血友病患者,
02:21
who had contracted HIV from a contaminated blood treatment,
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因為用感染的血液治療, 讓他染上了愛滋病毒,
02:24
and this marked the most profound shift in America's perception of HIV.
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造成美國人對愛滋病毒的感受 產生最深刻轉變。
02:30
No longer was it restricted to these dark corners of society,
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這病毒不只出現於社會的黑暗角落,
02:34
to queers and drug users,
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不只是同志和吸毒者才會得到,
02:36
but now it was affecting people
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它也會影響到那些
02:37
that society deemed worthy of their empathy,
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被社會視為值得同情的人,
02:40
to children.
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孩子們。
02:42
But that permeating fear and that perception, it still lingers.
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但那具穿透力的恐懼和感受 仍然徘徊不去。
02:47
And I want a show of hands for these next few questions.
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接下來的幾個問題, 要請各位舉手表示。
02:50
How many of you in here were aware that with treatment,
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在座有哪些人知道,透過治療,
02:54
those with HIV not only fend off AIDS completely,
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得了愛滋病毒的人 不只是能完全抵禦愛滋病,
02:57
but they live full and normal lives?
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他們還能回到完整、正常的生活?
03:02
Y'all are educated.
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你們都是受過教育的。
03:03
(Laughter)
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(笑聲)
03:04
How many of you are aware that with treatment,
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在座有哪些人知道,透過治療,
03:07
those with HIV can reach an undetectable status,
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得了愛滋病毒的人能夠 達到一種檢測不到的狀態,
03:10
and that makes them virtually uninfectious?
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且會讓他們幾乎是沒有傳染力的?
03:15
Much less.
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少了很多人。
03:16
How many of you were aware of the pre- and postexposure treatments
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在座有哪些人知道, 有暴露前和暴露後治療,
03:21
that are available that reduce the risk of transmission
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可以將傳染的風險減少掉
03:23
by over 90 percent?
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至少 90%?
03:27
See, these are incredible advancements that we have made in fighting HIV,
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看吧,我們在對抗愛滋病毒上 有這些不可思議的進步,
03:31
yet they have not managed to dent the perception
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但這些進步卻沒能夠影響到大部份
03:34
that most Americans have of the virus and those living with it.
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美國人對於該病毒以及病患的感受。
03:38
And I don't want you to think I'm downplaying the danger of this virus,
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我並不希望你們認為我刻意 輕描淡寫這種病毒的危險性,
03:44
and I am not ignorant of the harrowing past of the AIDS epidemic.
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我並不是不知道在愛滋病 流行時的那段悲慘歷史。
03:48
I am trying to convey that there is hope for those infected
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我想傳達的訊息是, 受感染的人是有希望的,
03:51
and HIV is not the death sentence it was in the '80s.
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且愛滋病毒不再像 八○年代時代表著死刑了。
03:55
And now you may ask, and I asked this question myself initially:
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你可能會問這個問題, 我自己在一開始就問了:
03:59
Where are the stories?
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故事在哪裡?
04:01
Where are these people living with HIV? Why haven't they been vocal?
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帶著愛滋病毒過日子的人在哪裡? 他們為什麼沒聲音?
04:05
How can I believe these successes, or these statistics,
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我要如何相信這些成功經驗 或是這些統計數據,
04:09
without seeing the successes?
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如果我沒親眼看見成功?
04:12
And this is actually a very easy question for me to answer.
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對我來說,要回答這個問題很容易。
04:16
Fear, stigma and shame:
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恐懼→汙名→羞恥:
04:20
these keep those living with HIV in the closet, so to speak.
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這些因素讓得了愛滋病毒的人 可以說是躲在櫃子裡面。
04:24
Our sexual histories are as personal to us as our medical histories,
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我們在性方面的過去經驗 和我們的病例一樣是很個人的資訊,
04:28
and when you overlap the two,
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當你把兩者部份重疊時,
04:29
you can find yourself in a very sensitive space.
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就會發現自己處在一個 非常敏感的空間中。
04:32
The fear of how others perceive us when we're honest
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當我們誠實的時候, 會害怕別人對我們的感受,
04:35
keeps us from doing many things in life,
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因此讓我們在人生中 有許多事都不敢去做,
04:38
and this is the case for the HIV-positive population.
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對於愛滋病毒檢測 陽性的人而言就是如此。
04:41
To face social scrutiny and ridicule is the price that we pay for transparency,
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我們要為透明所付出的代價, 就是面對社會的嚴密檢視和奚落,
04:47
and why become a martyr
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為什麼要當烈士,
04:49
when you can effectively pass as someone without HIV?
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如果你裝成沒有愛滋病的人 就能有效地混過去?
04:53
After all, there are no physical indications you have the virus.
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畢竟,沒有任何身體上的特徵 代表你得了愛滋病毒。
04:56
There's no sign that you wear.
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你身上沒有戴著標牌。
05:00
There is safety in assimilation,
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同化能夠帶來安全感,
05:02
and there is safety in invisibility.
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不被看見能夠帶來安全感。
05:06
I'm here to throw back that veil and share my story.
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我來這裡是要把面紗揭開, 分享我的故事。
05:11
So in the fall of 2014, I was a sophomore in college
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2014 年秋天,我是大二學生,
05:15
and like most college students, I was sexually active,
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我和大部份大學生一樣性活躍,
05:18
and I generally took precautions to minimize the risk that sex carries.
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我通常都會做預防措施 把性帶來的風險減到最小。
05:23
Now, I say generally, because I wasn't always safe.
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我說「通常」,因為 我並非總是那麼小心。
05:27
It only takes a single misstep before we're flat on the ground,
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只要一次失誤,我們就可能完蛋了,
05:30
and my misstep is pretty obvious.
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而我的失誤十分明顯。
05:32
I had unprotected sex, and I didn't think much of it.
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我曾做過沒有保護措施的性交, 而我不以為意。
05:35
Fast-forward about three weeks,
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把時間快轉三週,
05:37
and it felt like I'd been trampled by a herd of wildebeest.
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感覺就像我被一群牛羚踩踏過去。
05:42
The aches in my body were like nothing I have felt before or since.
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我過去和之後都沒有體驗過 這種程度的身體疼痛。
05:46
I would get these bouts of fever and chill.
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我會不斷發燒又發冷。
05:49
I would reel with nausea, and it was difficult to walk.
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我會因為眩暈嘔吐,很難行走。
05:53
Being a biology student, I had some prior exposure to disease,
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身為生物學系的學生, 我比別人早接觸到疾病知識,
05:57
and being a fairly informed gay man, I had read a bit on HIV,
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而身為一個有見識的同性戀, 我對愛滋病毒有些認識,
06:01
so to me, it clicked that this was seroconversion,
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所以,對我來說, 這似乎就是血清轉化現象,
06:04
or as it's sometimes called, acute HIV infection.
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或時候會被稱為急性愛滋病毒感染。
06:07
And this is the body's reaction
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而這是身體的反應,
06:09
in producing antibodies to the HIV antigen.
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產生愛滋病毒抗原的抗體。
06:12
It's important to note that not everybody goes through this phase of sickness,
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很重要的是要注意到,並非 每個人都會經歷這個生病階段,
06:16
but I was one of the lucky ones who did.
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而我很幸運是有經歷的人之一。
06:19
And I was lucky as in, there were these physical symptoms
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說幸運,是因為有這些身體徵兆,
06:22
that let me know, hey, something is wrong,
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才讓我知道,嘿, 好像有什麼不對勁,
06:25
and it let me detect the virus pretty early.
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讓我能在很早期就偵測出病毒。
06:29
So just to clarify, just to hit the nail on head,
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所以,為了澄清, 為了要能準確知道,
06:33
I got tested on campus.
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我在校園裡做了檢測。
06:35
And they said they would call me the next morning with the results,
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他們說,隔天早上會 打電話給我告訴我結果,
06:39
and they called me,
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他們打來了,
06:41
but they asked me to come in and speak to the doctor on staff.
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但他們是叫我過去,和醫生直接談。
06:44
And the reaction I received from her wasn't what I was expecting.
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而我從她身上得到的反應 和我預期的不同。
06:49
She reassured me what I already knew, that this wasn't a death sentence,
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她向我保證我已經知道的事, 這並不是判死刑,
06:53
and she even offered to put me in contact with her brother,
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她甚至願意讓我和她哥哥聯絡,
06:56
who had been living with HIV since the early '90s.
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她哥哥從九○年代初就 一直和愛滋病毒共存。
06:59
I declined her offer, but I was deeply touched.
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我拒絕了她的好意,但我深受感動。
07:03
I was expecting to be reprimanded.
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我本來預期會被譴責的。
07:05
I was expecting pity and disappointment,
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我本來預期會有憐憫和失望,
07:08
and I was shown compassion and human warmth,
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我得到的卻是同情和人情溫暖,
07:11
and I'm forever grateful for that first exchange.
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我永遠感激那第一次的交流。
07:15
So obviously for a few weeks, I was a physical mess.
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不難想像,接下來幾週, 我的身體狀況糟透了
07:20
Emotionally, mentally, I was doing OK.
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情緒上、心理上,我都還可以。
07:22
I was taking it well.
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對這件事我很能接受。
07:24
But my body was ravaged,
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但我的身體受盡蹂躪,
07:26
and those close to me, they weren't oblivious.
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和我親近的人,他們不會沒察覺。
07:29
So I sat my roommates down,
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所以,我請室友們坐下,
07:31
and I let them know I'd been diagnosed with HIV,
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我讓他們知道我被 診斷出了愛滋病毒,
07:34
that I was about to receive treatment, and I didn't want them to worry.
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我很快就要接受治療, 我不希望他們擔心。
07:39
And I remember the look on their faces.
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我還記得他們臉上的神情。
07:42
They were holding each other on the couch and they were crying,
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坐在沙發上,他們抱著彼此哭泣,
07:45
and I consoled them.
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而我在安慰他們。
07:46
I consoled them about my own bad news,
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因為我的壞消息,我還要安慰他們,
07:49
but it was heartwarming to see that they cared.
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但看到他們在乎,讓我覺得很窩心。
07:53
But from that night, I noticed a shift
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但從那晚之後, 我就注意到,我在家中
07:56
in the way that I was treated at home.
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被對待的方式有所轉變。
07:59
My roommates wouldn't touch anything of mine,
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我的室友不會碰任何我的東西,
08:01
and they wouldn't eat anything I had cooked.
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他們也不吃我煮的任何東西。
08:04
Now, in South Louisiana,
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在南路易斯安那州,
08:07
we all know that you don't refuse food.
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我們都知道你不會拒絕食物的。
08:09
(Laughter)
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(笑聲)
08:10
And I'm a damn good cook, so don't think that passed me by.
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而我是個超棒的廚師, 所以別以為我沒注意到。
08:13
(Laughter)
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(笑聲)
08:16
But from these first silent hints, their aversion got gradually more obvious
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但從這些最初的沉默暗示之後, 他們的反感漸漸變明顯了,
08:20
and more offensive.
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且更冒犯我了。
08:22
I was asked to move my toothbrush from the bathroom,
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我被要求牙刷不能放在浴室,
08:26
I was asked to not share towels,
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我被要求不能和他們共用毛巾,
08:28
and I was even asked to wash my clothes on a hotter setting.
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我甚至被要求洗衣服時 設定的水溫要更高。
08:32
This wasn't head lice, y'all.
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各位,這不是頭蝨。
08:34
This wasn't scabies. This was HIV.
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這不是疥瘡。這是愛滋病毒。
08:36
It can be transmitted through blood,
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它的傳染途徑有血液、
08:39
sexual fluids like semen or vaginal fluids
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性體液,如精子或陰道分泌液,
08:42
and breast milk.
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還有母乳。
08:43
Since I wasn't sleeping with my roommates,
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既然我沒和我的室友上床,
08:46
I wasn't breastfeeding them --
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我也沒有餵他們母乳,
08:48
(Laughter)
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(笑聲)
且我們又沒有在重演《暮光之城》, (譯註:吸血鬼電影)
08:49
and we weren't reenacting "Twilight,"
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08:51
I was of no risk to them
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我對他們而言是沒風險的。
08:53
and I made this aware to them,
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我讓他們知道這件事,
08:56
but still, this discomfort, it continued,
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但這種不舒服感仍然持續著,
08:58
until eventually I was asked to move out.
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直到最後我被要求搬出去。
09:01
And I was asked to move out
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我會被要求搬出去,
09:03
because one of my roommates had shared my status with her parents.
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是因為其中一名室友和 她的父母談了我的狀況。
09:06
She shared my personal medical information to strangers.
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她把我的個人醫療資訊 和陌生人分享。
09:13
And now I'm doing that in a roomful of 300 of y'all,
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而我現在在這間三百人的廳中 也在做著同樣的事,
09:16
but at the time, this was not something I was comfortable with,
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但當時,那件事讓我感到不舒服,
09:20
and they expressed their discomfort with their daughter living with me.
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而她父母表示,讓他們的女兒 和我同住會讓他們感到不舒服。
我是同性戀,在有 宗教信仰的家庭中長大,
09:25
So being gay, raised in a religious household
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09:27
and living in the South,
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還住在南方,
09:29
discrimination wasn't new to me.
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歧視對我來說並不陌生。
09:31
But this form was,
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但這個形式是以前沒碰過的,
09:34
and it was tremendously disappointing
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且它非常讓人失望,
09:36
because it came from such an unlikely source.
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因為它是來自那麼 不可能歧視我的來源。
09:40
Not only were these college-educated people,
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他們不只受大學教育,
09:43
not only were they other members of the LGBT community,
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他們不只也是 LGBT 社群的成員,
09:47
but they were also my friends.
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他們還是我的朋友。
09:50
So I did. I moved out at the end of the semester.
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所以,我照做了, 我在學期末時搬出去了。
09:53
But it wasn't to appease them.
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但搬出去不是為了滿足他們。
09:55
It was out of respect for myself.
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而是出於對我自己的尊重。
09:58
I wasn't going to subject myself to people
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我不要讓我自己臣服於
10:00
who were unwilling to remedy their ignorance,
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那些不願補救自身無知的人,
10:03
and I wasn't going to let something that was now a part of me
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我不要讓現在已經 成為我一部份的東西
10:06
ever be used as a tool against me.
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被用來當作對抗我的工具。
10:09
So I opted for transparency about my status,
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所以,我選擇讓我的狀況透明化,
10:13
always being visible.
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永遠被看見,不再躲藏。
10:15
And this is what I like to call being the everyday advocate.
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我把它稱為「當個日常的倡導者」。
10:19
The point of this transparency, the point of this everyday advocacy,
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這種透明化的重點, 做日常倡導者的重點,
10:23
was to dispel ignorance,
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是要消除無知,
10:25
and ignorance is a very scary word.
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而無知是個非常可怕的詞。
10:28
We don't want to be seen as ignorant,
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我們都不想被視為無知的人,
10:30
and we definitely don't want to be called it.
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我們肯定不想被說是無知的人。
10:33
But ignorance is not synonymous with stupid.
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但無知並不是愚笨的同義詞。
10:36
It's not the inability to learn.
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無知並非沒有能力去學習。
10:38
It's the state you're in before you learn.
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它是在你學習之前的一種狀態。
10:42
So when I saw someone coming from a place of ignorance,
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所以,當我看到 來自無知之地的人時,
10:45
I saw an opportunity for them to learn.
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我看到的是讓他們學習的機會。
10:48
And hopefully, if I could spread some education,
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我希望,如果我可以散佈一些教育,
10:51
then I could mitigate situations for others
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或許可以幫助遇到類似像 我的室友狀況的其他人,
10:54
like I had experienced with my roommates
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把情況緩和下來,
10:56
and save someone else down the line that humiliation.
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幫其他人省去一些羞辱。
11:00
So the reactions I received haven't been all positive.
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我得到的反應不全是正面的。
11:05
Here in the South,
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在南方這裡,
11:07
we have a lot stigma due to religious pressures,
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我們背負許多汙名, 原因包括宗教的壓力、
11:10
our lack of a comprehensive sex education
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我們缺乏全面的性教育,
11:13
and our general conservative outlook on anything sexual.
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以及我們一般來說會用保守眼光 來看任何和性有關的事。
11:16
We view this as a gay disease.
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我們把愛滋病視為同性戀的病。
11:19
Globally, most new HIV infections occur between heterosexual partners,
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全球來看,大部份新的愛滋病毒 感染案例發生在異性伴侶間,
11:24
and here in the States, women, especially women of color,
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在美國這裡,女性, 特別是有色人種女性,
11:26
are at an increased risk.
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面臨的風險在上升。
11:28
This is not a gay disease. It never has been.
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這並不是同性戀的病,從來就不是。
11:31
It's a disease we should all be concerned with.
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這是一種我們應該要關心的疾病。
11:35
So initially, I felt limited.
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所以,一開始,我覺得很受限。
11:38
I wanted to expand my scope and reach beyond what was around me.
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我想要擴展我的眼界, 想要脫出圍繞在我身邊的一切。
11:43
So naturally,
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所以,很自然地,
11:46
I turned to the dark underworld of online dating apps,
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我轉向了線上約會 應用程式的黑暗世界,
11:49
to apps like Grindr,
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像 Grindr 這種應用程式,
11:52
and for those of you who are unfamiliar,
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如果你不熟悉這領域,
11:54
these are dating apps targeted towards gay men.
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這些都是同性戀的約會應用程式。
11:56
You can upload a profile and a picture
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你可以上傳你的個人資訊和照片,
11:58
and it will show you available guys within a radius.
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它就會告訴你在一個半徑內 可聯繫的同性戀。
12:01
Y'all have probably heard of Tinder.
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你們可能都聽過 Tinder。
12:03
Grindr has been around for a lot longer,
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Grindr 的歷史比它長很多,
12:05
since it was much harder to meet your future gay husband
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因為若想找個同性戀的 未來老公相對難許多,
12:08
at church or the grocery store,
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不論在教堂、雜貨店,
12:10
or whatever straight people did
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或使用任何異性戀在發現 能用手機約會前的所使用的方式。
12:12
before they found out they could date on their phones.
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12:15
(Laughter)
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(笑聲)
12:16
So on Grindr, if you liked what you saw or read,
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所以,在 Grindr 上, 如果你喜歡你看到或讀到的,
12:19
you could send someone a message, you can meet up, you can do other things.
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你就可以發個訊息給對方, 你們可以見面,可以做其他事。
12:23
So on my profile, I obviously stated that I had HIV,
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所以,在我的個人資訊中, 我很明確寫出我有愛滋病毒,
12:27
I was undetectable, and I welcomed questions about my status.
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我的病毒是檢測不出來的, 且我歡迎大家詢問我的狀況。
12:32
And I received a lot of questions
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我收到很多問題,
12:34
and a lot of comments, both positive and negative.
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和很多意見,正面和負面的都有。
12:37
And I want to start with the negative,
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我想要從負面的開始,
12:40
just to frame some of this ignorance that I've mentioned before.
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只是想表達我之前提到的無知。
12:44
And most of these negative comments were passing remarks or assumptions.
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大部份的負面意見 都是在提出評論或是假設。
12:48
They would assume things about my sex life or my sex habits.
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他們對我的性生活 或是性習慣做出假設。
12:52
They would assume I put myself or others at risk.
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他們會假設我讓 我自己及他人承受風險。
12:55
But very often I would just be met with these passing ignorant remarks.
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但我經常遇到 這種提出無知評論的人。
12:59
In the gay community, it's common to hear the word "clean"
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在同性戀社群中, 常常會聽到「乾淨」這個字,
13:03
when you're referring to someone who is HIV negative.
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指的是愛滋病毒檢測結果陰性的人。
13:06
Of course the flip side to that is being unclean, or dirty,
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當然,它反面就是不乾淨,或骯髒,
13:10
when you do have HIV.
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也就是指有愛滋病毒的人。
13:11
Now, I'm not sensitive
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我並不敏感,
13:13
and I'm only truly dirty after a day in the field,
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我只有在田裡一整天之後 才會真的很骯髒,
13:17
but this is damaging language.
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但這是種有破壞性的用詞。
13:19
This is a community-driven stigma
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這是一種由社群驅使的汙名,
13:21
that keeps many gay men from disclosing their status,
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讓許多同性戀不敢揭露他們的狀況,
13:24
and it keeps those newly diagnosed
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也讓剛被診斷出愛滋病的人
13:26
from seeking support within their own community,
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不能在他們自己的社群內尋求協助,
13:28
and I find that truly distressing.
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而我覺得這點非常令人苦惱。
13:31
But thankfully, the positive responses have been a lot more numerous,
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但,謝天謝地,正面的回應更多,
13:35
and they came from guys who were curious.
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做出這些回應的是好奇的人。
13:37
And they were curious about the risks of transmission,
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他們好奇想了解傳染的風險,
13:40
or what exactly "undetectable" meant,
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或是「無法檢測出來」是什麼意思,
13:43
or where they could get tested,
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或是可以在哪裡做檢測,
13:45
or some guys would ask me about my experiences,
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或是還有人會問我我的經歷,
13:47
and I could share my story with them.
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我就能和他們分享我的故事。
13:49
But most importantly,
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但,最重要的是,
13:52
I would get approached by guys who were newly diagnosed with HIV
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會有剛被診斷出愛滋病的人來找我,
13:56
and they were scared, and they were alone,
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他們很害怕,他們很孤單,
13:58
and they didn't know what step to take next.
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他們不知道下一步該怎麼做。
14:01
They didn't want to tell their family,
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他們不想要告訴家人,
14:03
they didn't want to tell their friends
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他們不想要告訴朋友,
14:05
and they felt damaged, and they felt dirty.
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他們覺得受損、骯髒。
14:09
And I did whatever I could to immediately calm them,
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我會盡我所能立刻安撫他們,
14:12
and then I would put them in contact with AcadianaCares,
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接著,我會讓他們和 AcadianaCares 搭上線,
14:15
which is a wonderful resource we have in our community
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那是我們社群當中一個很棒的資源,
14:18
for those with HIV.
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針對愛滋病患者的。
14:20
And I'd put them in contact with people I knew personally
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我讓他們聯絡我自身認識的人,
14:23
so that they could not only have this safe space to feel human again,
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讓他們不只能找到一個 再次感到自己是人的地方,
14:27
but so they could also have the resources they needed
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同時也可以取得他們需要的資源,
14:30
in affording their treatment.
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讓他們能負擔治療。
14:32
And this was by far the most humbling aspect
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目前為止,這是我讓自己透明化之後
14:35
of my transparency,
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最謙遜的面向,
14:37
that I could have some positive impact on those who were suffering like I did,
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我能夠對和我一樣受苦的人 造成正面的影響,
14:42
that I could help those who were in the dark,
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我可以協助在黑暗中的人,
14:45
because I had been there, and it wasn't a good place to be.
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因為我也曾在黑暗中待過, 那並不是個好棲身處。
14:49
These guys came from all different backgrounds,
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這些人來自各式各樣的背景,
14:51
and many of them weren't as informed as I had been,
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當中許多人並不像 我當時知道的那麼多,
14:54
and they were coming to me from a place of fear.
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他們是從恐懼的地方過來找我。
14:57
Some of these people I knew personally,
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這些人當中,有的我認識本人,
14:59
or they knew of me,
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或是他們聽說過我,
15:01
but many more, they were anonymous.
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但更多是匿名的人。
15:03
They were these blank profiles who were too afraid to show their faces
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他們的個人資訊是空白的, 在發生了他們告訴我的那些事之後,
15:07
after what they had told me.
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他們害怕到不願露臉。
15:09
And on the topic of transparency,
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至於透明化的這個主題,
15:12
I want to leave y'all with a few thoughts.
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我想要留給各位幾個想法,
15:14
I found that with whatever risk or gamble I took
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我發現,當我公開我的臉孔,
不論我冒什麼風險或賭上什麼,
15:18
in putting my face out there,
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15:20
it was well worth any negative comment,
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任何負面評論都值得,
15:22
any flak I received,
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我受到的任何抨擊都值得,
15:24
because I felt I was able to make this real and this tangible impact.
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因為我覺得我能夠造成 這真實、有形的影響。
15:29
And it showed me that our efforts resound,
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它讓我看到我們的努力得到迴響,
15:32
that we can alter the lives that we encounter for the good,
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我們為善能夠改變 那些和我們相遇的生命,
15:36
and they in turn can take that momentum and push it even further.
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輪到他們用那動能向前更推進一步。
15:40
And if any of you or anyone you know is dealing with HIV,
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如果你們或是你們認識的人 正在對抗愛滋病毒,
15:44
or if you want to see what resources you have in your community,
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或是如果你想要知道 你的社群內有什麼資源,
15:47
or just educate yourself more on the disease,
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或只是想讓自己學更多 關於這疾病的知識,
15:50
here are some wonderful national sites that you can access
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這裡有一些很棒的全國網站, 可以上去看看,
15:53
and you are more than welcome to find me after this talk
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也非常歡迎你們在 這場演說之後來找我,
15:56
and ask me anything you'd like.
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問我任何你們想問的問題。
15:59
We've all heard the phrase "to see the forest through the trees,"
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我們都聽過「見樹不見林」,
16:03
so I implore all of you here to really see the human through the disease.
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我懇求在座所有人, 真正去看到這疾病背後的「人」。
16:09
It's a very easy thing to see numbers and statistics
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只看數字和統計資料很容易,
只感受到危險也非常容易。
16:13
and only see the perceived dangers.
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16:16
It's a much harder thing to see all the faces behind those numbers.
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難的是看到這些數字 背後的所有面孔。
16:22
So when you find yourself thinking those things, those words,
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當你發現你自己開始思考 這些事、這些話,
16:25
what you might have thought looking at David Kirby,
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當你看著大衛柯比時 你可能會想什麼,
16:28
I ask you instead,
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我請你改個方式,
16:31
think son,
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想想兒子,
16:33
or think brother,
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或想想兄弟,
16:35
think friend
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想想朋友,
16:37
and most importantly, think human.
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最重要的,想想人類。
16:40
Seek education when faced with ignorance,
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面對無知的人時,尋求教育,
16:43
and always be mindful,
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總是記得留心,
16:45
and always be compassionate.
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總是保有同情心。
16:48
Thank you.
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謝謝你們。
16:49
(Applause)
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(掌聲)
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