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

So I want to start this talk by showing y'all a photo,

翻译人员: Yan Gao 校对人员: Kangping Qi

首先，我想用一张照片 来开始这个演讲，

and it's a photo many of you have probably seen before.

可能很多人以前见过这张照片。

So I want you all to take a moment

那我希望大家花一点时间，

and look at this photo,

仔细看这张照片，

and really reflect on some of the things that come to mind,

并真正关注一下 在脑海中浮现的一些事情，

and what are some of those things, those words.

关注一下那是些什么事，什么话。

Now, I'm going to ask you all to look at me.

现在，请大家再看看我。

What words come to mind when you look at me?

当你看着我时，想到的是什么词？

What separates that man up there

照片中那个男人

与我有什么区别？

from me?

The man in that photo is named David Kirby

那照片中的男人名叫 大卫·柯比（David Kirby），

and it was taken in 1990 as he was dying from AIDS-related illness,

照片是在1990年他因艾滋相关疾病 即将死去时拍摄，

and it was subsequently published in "Life Magazine."

后来在“生活杂志”上发表。

The only real thing separating me from Kirby

我与柯比的唯一真正区别是，

is about 30 years of medical advancements in the way that we treat HIV and AIDS.

HIV（人类免疫缺陷病毒）和艾滋病 的治疗方法已经进步了30年。

So what I want to ask next is this:

那么我想问的下一个问题是：

If we have made such exponential progress

如果我们在抗击HIV方面

in combatting HIV,

取得如此指数级的进展，

why haven't our perceptions of those with the virus evolved alongside?

为什么对这些病毒的认知 却没有随之进步呢？

Why does HIV elicit this reaction from us when it's so easily managed?

为什么HIV如此容易控制， 却还会引发我们这种反应呢？

When did the stigmatization even occur,

污名化究竟是什么时候开始发生的？

and why hasn't it subsided?

又为什么还没消退呢？

And these are not easy questions to answer.

这些都是难以回答的问题。

它们汇聚了太多的 不同因素和想法。

They're the congealing of so many different factors and ideas.

Powerful images, like this one of Kirby,

像柯比照片这样的震撼影像，

就是上世纪80和90年代 艾滋病危机的形象，

these were the faces of the AIDS crisis in the '80s and '90s,

and at the time the crisis had a very obvious impact

当时的危机非常明显地冲击了

on an already stigmatized group of people,

一个已经有污名的人群，

and that was gay men.

那就是男同性恋。

So what the general straight public saw was this very awful thing

大多异性恋公众所看到的是， 非常可怕的事正发生在

happening to a group of people who were already on the fringes of society.

一群已经处于社会边缘的人身上。

The media at the time began to use the two almost interchangeably --

当时的媒体开始将这两个词 几乎可互换地使用：

gay and AIDS --

同性恋和艾滋病——

and at the 1984 Republican National Convention,

而在1984年共和党全国大会上，

one of the speakers joked that gay stood for: "Got AIDS yet?"

一个发言人笑说，同性恋一词是 “得了艾滋病没？”的缩写。

And that was the mindset at the time.

这就是当时大众的普遍心态。

But as we started to understand the virus more

但随着我们开始更多地了解这病毒，

以及它的传播方式，

and how it was transmitted,

we realized that that risk had increased its territory.

我们意识到这种风险 扩大了它的版图。

The highly profiled case of Ryan White in 1985,

1985年的瑞恩·怀特（Ryan White） 案例引起了高度关注，

who was a 13-year-old hemophiliac

他是13岁的血友病患者，

who had contracted HIV from a contaminated blood treatment,

通过被污染的血液治疗感染了HIV，

and this marked the most profound shift in America's perception of HIV.

这标志着美国对HIV的认知 的最深刻的转变。

No longer was it restricted to these dark corners of society,

它不再局限于社会的阴暗角落、

to queers and drug users,

酷儿（同性恋者）和吸毒者，

but now it was affecting people

而是正在影响着

that society deemed worthy of their empathy,

社会上认为值得同情的人们，

to children.

孩子们。

But that permeating fear and that perception, it still lingers.

但是那种入骨的恐惧 和那种偏见，仍然存在。

And I want a show of hands for these next few questions.

下面几个问题我希望 大家可以举手示意。

How many of you in here were aware that with treatment,

你们有多少人知道， 通过治疗，

those with HIV not only fend off AIDS completely,

HIV感染者不仅能够 完全抵御艾滋病，

but they live full and normal lives?

而且能够过上完整且正常的生活？

Y'all are educated.

你们都学过啊。

(Laughter)

（笑声）

How many of you are aware that with treatment,

你们中有多少人知道， 通过治疗，

those with HIV can reach an undetectable status,

HIV感染者可以实现 检测不到病毒的状态，

and that makes them virtually uninfectious?

这种状态使他们 事实上没有传染性？

Much less.

知道的人少多了。

How many of you were aware of the pre- and postexposure treatments

你们中有多少人知道， 现在有暴露前和暴露后治疗，

可以把传播风险

that are available that reduce the risk of transmission

by over 90 percent?

降低90%以上？

See, these are incredible advancements that we have made in fighting HIV,

看，这些是在抗击HIV方面 已经取得的惊人进步，

yet they have not managed to dent the perception

却仍不能削弱多数美国人

that most Americans have of the virus and those living with it.

对该病毒和病毒感染者的认知。

And I don't want you to think I'm downplaying the danger of this virus,

我不想让大家认为我在 对这种病毒的危险轻描淡写，

and I am not ignorant of the harrowing past of the AIDS epidemic.

我也不是不知道 艾滋病大流行的悲惨历史。

I am trying to convey that there is hope for those infected

我想表达的是， 那些感染者是有希望的，

and HIV is not the death sentence it was in the '80s.

HIV不再是80年代的死刑了。

And now you may ask, and I asked this question myself initially:

那你可能会问， 我当初也这么问过自己：

Where are the stories?

真实故事在哪里？

Where are these people living with HIV? Why haven't they been vocal?

这些HIV感染者在哪？ 为什么他们不出声？

How can I believe these successes, or these statistics,

没有看到成功案例，

我怎么相信这些成功， 或这些统计数字？

without seeing the successes?

And this is actually a very easy question for me to answer.

这个问题对我来说 实际上很容易回答。

Fear, stigma and shame:

恐惧、污名和耻辱，

可以说，是这些让 HIV感染者隐姓埋名。

these keep those living with HIV in the closet, so to speak.

Our sexual histories are as personal to us as our medical histories,

对我们来说，性史 与病历一样是隐私，

and when you overlap the two,

当两者重叠时，

you can find yourself in a very sensitive space.

你会发现自己处在一个 非常敏感的空间里。

The fear of how others perceive us when we're honest

对坦诚之后别人会 如何看待我们的恐惧，

keeps us from doing many things in life,

让我们逃避生活中的很多事情，

and this is the case for the HIV-positive population.

HIV阳性人群就是这样。

To face social scrutiny and ridicule is the price that we pay for transparency,

面对社会的评判和嘲笑 是我们公开隐私的代价，

and why become a martyr

如果能够像没有HIV的人 一样若无其事，

when you can effectively pass as someone without HIV?

那还为什么去做烈士？

After all, there are no physical indications you have the virus.

毕竟，没有任何身体迹象 表明你携带病毒。

There's no sign that you wear.

你身上没有标记。

There is safety in assimilation,

同化带来安全感，

and there is safety in invisibility.

隐身也有安全感。

I'm here to throw back that veil and share my story.

但我来这里是为了扔掉面纱， 分享我的故事。

So in the fall of 2014, I was a sophomore in college

2014年秋，我上大学二年级，

就像多数大学生一样， 我性行为活跃，

and like most college students, I was sexually active,

and I generally took precautions to minimize the risk that sex carries.

通常我都采取预防措施， 以尽量减小性病风险。

Now, I say generally, because I wasn't always safe.

我说通常，是因为 并没有确保每一次都安全。

It only takes a single misstep before we're flat on the ground,

而摔倒在地只需要迈错一步而已，

and my misstep is pretty obvious.

我迈错的那一步很简单,

I had unprotected sex, and I didn't think much of it.

发生了未加保护的性行为， 而我也并没有多想。

Fast-forward about three weeks,

大概三周之后，

and it felt like I'd been trampled by a herd of wildebeest.

我感觉像被牛群踩过一样。

The aches in my body were like nothing I have felt before or since.

身体的疼痛是在那之前或之后 都从未经历过的。

I would get these bouts of fever and chill.

我出现了发烧和寒颤，

I would reel with nausea, and it was difficult to walk.

恶心呕吐，走路都困难。

Being a biology student, I had some prior exposure to disease,

作为生物专业的学生， 我以前接触过疾病，

and being a fairly informed gay man, I had read a bit on HIV,

而且作为知识丰富的男同性恋， 我也读过关于HIV的文章，

so to me, it clicked that this was seroconversion,

所以我知道，这是一种血清转化，

or as it's sometimes called, acute HIV infection.

或者有时叫做急性HIV感染。

And this is the body's reaction

这是人体对HIV抗原

in producing antibodies to the HIV antigen.

产生抗体的反应。

It's important to note that not everybody goes through this phase of sickness,

重点是要了解，并不是每个人 都经历这个发病阶段，

but I was one of the lucky ones who did.

而我是经历了 该发病阶段的幸运者之一。

And I was lucky as in, there were these physical symptoms

我很幸运是因为，这些身体症状

that let me know, hey, something is wrong,

在告诉我，嘿，出问题了，

and it let me detect the virus pretty early.

并让我早点去做病毒检测。

So just to clarify, just to hit the nail on head,

所以就为了确认， 为了被一针见血地告知，

I got tested on campus.

我在学校做了测试。

And they said they would call me the next morning with the results,

他们先说第二天早上 会打电话告诉我结果，

and they called me,

然而当他们给我打电话时，

but they asked me to come in and speak to the doctor on staff.

叫我本人到场与医生谈谈。

And the reaction I received from her wasn't what I was expecting.

医生对我的反应我并没意料到。

She reassured me what I already knew, that this wasn't a death sentence,

她确认了我已经知道的事实， 这并不是死刑，

and she even offered to put me in contact with her brother,

她甚至愿意让我联系她哥哥——

who had been living with HIV since the early '90s.

一个从90年代初期开始携带HIV的人。

I declined her offer, but I was deeply touched.

我拒绝了她的好意，但深受感动。

I was expecting to be reprimanded.

我所预期的是被谴责。

I was expecting pity and disappointment,

我在等着的是怜悯和失望，

但我看到的是同情和人性温暖，

and I was shown compassion and human warmth,

and I'm forever grateful for that first exchange.

我永远感激这第一次的交流。

So obviously for a few weeks, I was a physical mess.

当然，之后的几个星期， 我的身体状况一塌糊涂。

Emotionally, mentally, I was doing OK.

但在情绪上、心理上，我还好。

I was taking it well.

我接受了这个事实。

But my body was ravaged,

但是我的身体备受折磨，

and those close to me, they weren't oblivious.

而我身边的人还不知道。

So I sat my roommates down,

所以我请室友们坐下，

and I let them know I'd been diagnosed with HIV,

告诉他们我已经被 诊断出感染了HIV，

that I was about to receive treatment, and I didn't want them to worry.

我正要接受治疗， 也希望他们不要担心。

我还记得他们脸上的表情。

And I remember the look on their faces.

They were holding each other on the couch and they were crying,

他们在沙发上互相抱着哭，

and I consoled them.

我就安慰他们。

I consoled them about my own bad news,

这是我自己的悲催消息， 我却在安慰他们，

but it was heartwarming to see that they cared.

但看到他们在乎我， 是很温暖的感觉。

But from that night, I noticed a shift

但从那天晚上开始，我注意到

in the way that I was treated at home.

他们在家对待我的方式变了。

My roommates wouldn't touch anything of mine,

室友们不碰我的东西，

and they wouldn't eat anything I had cooked.

也不吃我煮的饭。

Now, in South Louisiana,

可是，在南路易斯安那州，

we all know that you don't refuse food.

我们都知道，没人拒绝食物。

(Laughter)

（笑声）

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

而我是个超棒的厨师， 所以不要以为是我厨艺差。

(Laughter)

（笑声）

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

但从这些最初的沉默暗示开始， 他们的厌恶变得越来越明显，

and more offensive.

也越来越无礼。

I was asked to move my toothbrush from the bathroom,

他们让我把牙刷从洗手间拿走，

I was asked to not share towels,

让我不要共用毛巾，

and I was even asked to wash my clothes on a hotter setting.

甚至让我洗衣服时设置更高的温度。

This wasn't head lice, y'all.

嘿，这不是头虱，

This wasn't scabies. This was HIV.

这也不是疥疮，这是HIV。

It can be transmitted through blood,

它的传播渠道是血液、

sexual fluids like semen or vaginal fluids

诸如精液或阴道液的体液、

和母乳。

and breast milk.

Since I wasn't sleeping with my roommates,

既然我没有与室友上床，

I wasn't breastfeeding them --

也没有给他们母乳喂养——

(Laughter)

（笑声）

and we weren't reenacting "Twilight,"

我们也没有重演“暮光之城”，

I was of no risk to them

我对他们完全没有危险，

and I made this aware to them,

我也明确告诉了他们，

but still, this discomfort, it continued,

但是，这种不适仍在继续，

until eventually I was asked to move out.

直到最后我被要求搬出去。

And I was asked to move out

我被要求搬出去，

because one of my roommates had shared my status with her parents.

因为其中一个室友把 我的状况告诉了她父母。

She shared my personal medical information to strangers.

她把我的个人医疗信息 告诉给陌生人。

And now I'm doing that in a roomful of 300 of y'all,

虽然现在我正与你们300人分享，

but at the time, this was not something I was comfortable with,

但那时的分享让我很不舒服，

and they expressed their discomfort with their daughter living with me.

他们对女儿与我在 同一屋檐下表示不安。

So being gay, raised in a religious household

作为同性恋， 在宗教家庭中长大，

and living in the South,

生活在南方，

discrimination wasn't new to me.

歧视对我来说并不陌生。

But this form was,

但是这种形式是陌生的，

and it was tremendously disappointing

而且是非常令人失望的，

因为它来自一个不太可能的来源。

because it came from such an unlikely source.

Not only were these college-educated people,

这些人不仅受过大学教育，

not only were they other members of the LGBT community,

不仅是LGBT社群的成员，

but they were also my friends.

而且他们还是我的朋友。

So I did. I moved out at the end of the semester.

所以我认了。 我在学期末搬出去了。

But it wasn't to appease them.

但那不是为了让他们满意。

It was out of respect for myself.

那是出于对我自己的尊重。

I wasn't going to subject myself to people

我没打算屈服于那些

who were unwilling to remedy their ignorance,

不愿意补救自己无知的人，

and I wasn't going to let something that was now a part of me

也不会让这已经进入我生命的东西

ever be used as a tool against me.

被当作工具来敌视我。

So I opted for transparency about my status,

所以我选择将自己的状态透明化，

永远可见。

always being visible.

And this is what I like to call being the everyday advocate.

这就是我所说的 做个日常倡导者。

这种透明的重点， 这个日常倡导的重点，

The point of this transparency, the point of this everyday advocacy,

was to dispel ignorance,

是消除无知，

and ignorance is a very scary word.

无知是一个非常可怕的词。

We don't want to be seen as ignorant,

我们不想被视为无知者，

and we definitely don't want to be called it.

我们也绝对不希望被称为无知者。

But ignorance is not synonymous with stupid.

但无知跟愚蠢不一样。

It's not the inability to learn.

无知不是学习能力的缺失。

It's the state you're in before you learn.

它是你学会之前的状态。

So when I saw someone coming from a place of ignorance,

所以每当我看到无知的人，

I saw an opportunity for them to learn.

我看到的是他们学习的机会。

And hopefully, if I could spread some education,

希望是，如果我能传播一点教育，

then I could mitigate situations for others

那么我可以帮助别人

like I had experienced with my roommates

减轻我与我室友经历的状况，

and save someone else down the line that humiliation.

在羞耻的队列里拯救某人。

So the reactions I received haven't been all positive.

我收到的反馈并不全是正面的。

Here in the South,

在南部这里，

我们背负很多污名， 因为宗教压力，

we have a lot stigma due to religious pressures,

our lack of a comprehensive sex education

因为缺乏全面的性教育，

and our general conservative outlook on anything sexual.

以及对涉及性的一切 持有的普遍保守观念。

We view this as a gay disease.

我们把这当作同性恋疾病。

Globally, most new HIV infections occur between heterosexual partners,

世界上大多数新的HIV感染 发生在异性伴侣之间，

在美国，女性，特别是有色女性

and here in the States, women, especially women of color,

are at an increased risk.

的风险正在增加。

This is not a gay disease. It never has been.

这不是同性恋疾病。 它从来都不是。

It's a disease we should all be concerned with.

这是一个所有人都应该 关心的疾病。

So initially, I felt limited.

最初，我感到了局限。

I wanted to expand my scope and reach beyond what was around me.

我想扩大我的范围， 超越我周围的环境。

So naturally,

很自然地，

I turned to the dark underworld of online dating apps,

我转向在线约会应用程序 的阴暗地下世界，

to apps like Grindr,

像Grindr这样的应用程序，

and for those of you who are unfamiliar,

对于那些不熟悉的人，

these are dating apps targeted towards gay men.

这些是针对同性恋男子的 约会应用程序。

You can upload a profile and a picture

这里可以上传个人资料和照片，

and it will show you available guys within a radius.

它会显示一定距离内可以约的人。

你们大概听说过Tinder。

Y'all have probably heard of Tinder.

Grindr has been around for a lot longer,

Grindr存在的时间长得多，

since it was much harder to meet your future gay husband

因为在教堂或小商店遇见， 或异性恋会用手机约会之前

at church or the grocery store,

使用的任何方法，

or whatever straight people did

对于遇见你未来的同性恋丈夫，

before they found out they could date on their phones.

难度都很大。

(Laughter)

（笑声）

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

所以在Grindr上，如果你 看到喜欢的照片或文字，

you could send someone a message, you can meet up, you can do other things.

可以给他发个短信， 可以见面，也可以做别的事情。

So on my profile, I obviously stated that I had HIV,

在我的简介中， 我明确表示我有HIV，

I was undetectable, and I welcomed questions about my status.

但处于检测不到的状态， 并且欢迎就我的状况提问。

And I received a lot of questions

我收到了许多问题

and a lot of comments, both positive and negative.

和很多意见， 既有正面的也有负面的。

And I want to start with the negative,

我想先说负面的，

just to frame some of this ignorance that I've mentioned before.

只是为了阐明一些我之前 提到的这种无知。

And most of these negative comments were passing remarks or assumptions.

这些负面评论的大部分 传递的是评论或假设。

They would assume things about my sex life or my sex habits.

他们会假设我的性生活或 我的性行为习惯。

They would assume I put myself or others at risk.

他们会假设我把自己 或他人置于危险之中。

But very often I would just be met with these passing ignorant remarks.

但是很多时候，我只是收到 这些无知的言论。

In the gay community, it's common to hear the word "clean"

在同性恋群体中， 当你提到HIV阴性的人时，

when you're referring to someone who is HIV negative.

常听到“干净”这个词。

Of course the flip side to that is being unclean, or dirty,

当然，如果你有HIV， 那么就是它的反面，

when you do have HIV.

“不洁”或者肮脏。

Now, I'm not sensitive

我不是敏感，

and I'm only truly dirty after a day in the field,

也只有在地里忙一天之后 我才真的会脏，

but this is damaging language.

但这是一种破坏性的语言。

This is a community-driven stigma

这是一个由群体驱动的污名，

that keeps many gay men from disclosing their status,

让很多同性恋者不愿透漏身份，

and it keeps those newly diagnosed

让新诊断出来的人

from seeking support within their own community,

不敢在他们自己的群体里寻求支持，

and I find that truly distressing.

我对此深感痛心。

But thankfully, the positive responses have been a lot more numerous,

不过要感谢的是， 正面回应的数量多得多，

and they came from guys who were curious.

都是来自好奇的人们。

And they were curious about the risks of transmission,

而且他们对传播的风险感到好奇，

or what exactly "undetectable" meant,

或者好奇“检测不到”具体什么意思，

or where they could get tested,

或者是去哪可以做检测，

or some guys would ask me about my experiences,

有些人会询问我的经历，

and I could share my story with them.

我也可以和他们分享我的故事。

But most importantly,

但最重要的是，

I would get approached by guys who were newly diagnosed with HIV

我也会接触到刚刚诊断出HIV的人，

and they were scared, and they were alone,

他们害怕，孤立无助，

and they didn't know what step to take next.

不知道下一步怎么办。

They didn't want to tell their family,

他们不想告诉家里人，

they didn't want to tell their friends

不想告诉朋友，

and they felt damaged, and they felt dirty.

他们觉得被毁了，觉得自己很脏。

And I did whatever I could to immediately calm them,

我尽一切可能让他们立即冷静下来，

and then I would put them in contact with AcadianaCares,

然后让他们与AcadianaCares联系，

which is a wonderful resource we have in our community

那是我们社区具备的很棒的资源，

for those with HIV.

为HIV感染者服务。

And I'd put them in contact with people I knew personally

而且我让他们和我 私下认识的人联系，

so that they could not only have this safe space to feel human again,

让他们不但有安全的空间 可以重整心情，

but so they could also have the resources they needed

还拥有所需的资源

in affording their treatment.

来负担治疗。

And this was by far the most humbling aspect

这是迄今为止我的透明化

of my transparency,

带来的最普及的方面，

that I could have some positive impact on those who were suffering like I did,

我还可以给像我一样痛苦过 的人带来积极影响，

that I could help those who were in the dark,

我可以帮助那些身处黑暗中的人，

because I had been there, and it wasn't a good place to be.

因为我也曾经历过， 那不好过。

These guys came from all different backgrounds,

这些人来自各种不同的背景，

and many of them weren't as informed as I had been,

他们很多人并不像我一样懂很多，

and they were coming to me from a place of fear.

他们是带着恐惧来找我的。

Some of these people I knew personally,

一部分人与我私下相识，

or they knew of me,

或者他们知道我，

but many more, they were anonymous.

但更多的人是匿名的。

They were these blank profiles who were too afraid to show their faces

他们的身份档案一片空白，

对我说出实情后又不敢露脸的人。

after what they had told me.

And on the topic of transparency,

关于透明度的话题，

I want to leave y'all with a few thoughts.

我想留下几点想法。

I found that with whatever risk or gamble I took

我发现，公开自己的身份，

无论有多冒险或孤注一掷，

in putting my face out there,

相比我收到的任何 负面评价、任何抨击，

it was well worth any negative comment,

any flak I received,

都是很值的，

because I felt I was able to make this real and this tangible impact.

因为我觉得自己能够 做出真正的、切实的影响。

And it showed me that our efforts resound,

它也表明，我们的努力是有回报的，

that we can alter the lives that we encounter for the good,

去善意改变我们遇到的生命，

and they in turn can take that momentum and push it even further.

他们也会接受那份动力， 并把它推得更高。

And if any of you or anyone you know is dealing with HIV,

如果你或你认识的任何人 正在对抗HIV，

or if you want to see what resources you have in your community,

或者你想了解你的社群中有哪些资源，

or just educate yourself more on the disease,

或者只想多了解点这种疾病，

here are some wonderful national sites that you can access

那么可以访问这些 很棒的全国网站，

and you are more than welcome to find me after this talk

也欢迎在演讲之后找我，

and ask me anything you'd like.

问我任何你想问的问题。

我们都听过“透过树木看见森林”，

We've all heard the phrase "to see the forest through the trees,"

so I implore all of you here to really see the human through the disease.

所以我在这里恳请大家 透过疾病看见人性。

It's a very easy thing to see numbers and statistics

看到数字和统计数据时，

and only see the perceived dangers.

很容易只看到已知的危险。

It's a much harder thing to see all the faces behind those numbers.

而看见那些数字背后的 面孔要难得多。

So when you find yourself thinking those things, those words,

所以，当你发现自己 在想着那些事，那些词语，

what you might have thought looking at David Kirby,

那些看着大卫·柯比会想起的东西，

I ask you instead,

我请你，

think son,

想想儿子，

or think brother,

或想想兄弟，

think friend

想想朋友，

and most importantly, think human.

最重要的，想想人类。

Seek education when faced with ignorance,

当面对无知时，寻求教育，

and always be mindful,

时刻保持警觉，

and always be compassionate.

始终富有同情心。

Thank you.

谢谢。

(Applause)

（掌声）