How Community-Led Research Drives Social Change | Monica Malta | TED

翻译人员: Yiling Deng 校对人员: Bruce Wang

It was December 1996

那是1996年12月，

and close to 100 degrees Fahrenheit in Rio, Brazil.

巴西里约热内卢的温度接近100华 氏度。

December is really hot there.

那里的十二月真的很热。

I was sitting in the waiting room

我正坐在等候室里，

and couldn't help but notice the loving couples holding hands

忍不住注意到 恩爱的情侣牵手

discussing nursery plans, baby names.

讨论育儿计划，宝宝的名字。

I sat in the chair alone with my five-year-old daughter,

我和我五岁的女儿 独自坐在椅子上，

feeling the kicks of my unborn child in my belly.

感觉到我未出生的孩子 在我的肚子里踢。

I was uninsured, unemployed,

我没有保险、失业、

living with my parents, and eight months pregnant.

与父母同住以及怀孕八个月。

I wasn't even 30,

我还不到30岁，

but already a survivor of a ten-year marriage

但已经是十年婚姻的幸存者了

where violence was the daily norm.

在这段婚姻中， 暴力是每天的常态。

After broken bones and broken dreams,

在骨折和梦想破碎之后，

it seemed my life couldn't get worse.

我的生活似乎再糟糕不过了。

Or so I thought.

我这么想着。

When my doctor called me,

当我的医生给我打电话时，

I noticed her serious expression and felt a chill down my spine.

我注意到她严肃的表情 并且感到脊椎发冷。

And then she asked me, "Are you faithful?"

然后她问我：“你忠诚吗？”

I thought, wait, what?

我想，等等，什么？

What the heck?

到底怎么了？

And I just kept staring at her with a glazed look on my face

而且我一直盯着她，一脸茫然，

unaware of what was going on.

不知道发生了什么。

She insisted, "Are you faithful?

她坚持说：“你忠诚吗？

Do you have relationships other than with your husband?"

“除了和你丈夫之外， 你还有其他关系吗？”

And then I told her once again that I had just divorced from my abuser,

然后我再次告诉她， 我刚刚与施暴者离婚，

was living with my parents and little daughter,

与父母和小女儿住在一起，

eight months pregnant,

已经怀孕八个月，

definitely not thinking about a candle-light date.

绝对没有在考虑烛光约会。

And then she said,

然后她说：

"The thing is, you have AIDS.

“问题是，你得了艾滋病。

And by reading your exams, I've got to tell you,

通过你的医学检查， 我得告诉你，

you won't survive to raise this child."

抚养这个孩子的话 你会你活不下去。”

Globally, one in three women face physical or sexual violence

在全球范围内，三分之一的女性 面临人身或性暴力，

at some point in their lives,

在生命中的某个时刻

a number that has remained unchanged over the past decade.

这一数字在过去十年中一直保持不变。

And just like me, women who experienced domestic violence

就像我一样， 经历过家庭暴力的女性

are three times more likely to get HIV,

感染艾滋病毒的可能性要高三倍，

usually from their abuser.

通常来自施暴者。

But here's the thing,

但问题是，

most of the research done to address this problem

为解决这个问题 所做的大多数研究

is led by academics

都是由学者领导

with minimal input

而几乎没有

or participation from the women facing this terrible reality.

面对这一糟糕现状的女性的意见或参与。

With a traditional, top-down approach to research,

通过传统的、自上而下的 研究方法，

academics with more power and resources,

拥有更多权力和资源的学者，

swoop in to “save” communities

忽然闯进来“拯救”社区

with strategies and questions

用一些策略和问题

that often end up perpetuating biases and stigma

一些常常结束于带着偏见和污名

against the very people they want to assist.

来面对大多他们想拯救的人。

This leaves them feeling ashamed, confused and diminished.

这使他们感到羞愧、 困惑和沮丧。

There is also a risk of not getting to the root of the problem.

这还存在无法找到问题根源的风险。

How can we "fix" communities' challenges if they can't provide any input?

如果社区无法提供任何意见， 我们如何“解决” 社区面临的挑战？

Aren't they the best experts of their own lives and experiences?

他们难道不是自己生活和经历的 最好的专家吗？

I came to understand this firsthand,

我亲身了解了这一点，

both during my experience with my doctor on that day

在看医生的过程中，

and through my own professional journey.

以及在我自己的职业生涯中。

First of all, my doctor was wrong.

首先，我的医生错了。

It is 2024 and I'm still here, 28 years later.

现在是 2024 年， 28 年后我还在这里。

I was sick for a long time,

我病了很长时间，

but eventually I got better and lived long enough

但最终我好起来了， 并且活得足够久

to become a woman's right activist, a professor and a scientist.

去成为一名女性权利活动家、 教授和科学家。

And in honor to the countless women who did not survive domestic violence

为了纪念无数在家庭暴力

and HIV AIDS,

和艾滋病毒/艾滋病中幸存下来的女性，

I wanted to use my science to make a difference

我想用我的科学来改变

in the lives of others like me.

像我这样的人的生活。

But that meant changing the way science was done in the first place.

但这首先意味着要改变 科学的运作方式。

Back in grad school,

回到研究生院时，

I got this very neat research project.

我有了这个非常漂亮的研究项目。

I was going to help improve the lives and health of sex workers from Brazil,

我本来打算帮助改善来自巴西的 性工作者的生活和健康，

so I hit the streets to interview them.

所以我走上街头采访他们。

The main question I was supposed to ask:

我本该问的主要问题是：

"How often do you have sex without a condom?"

“你没有使用避孕套的 性生活频率是怎样的？”

Pretty soon I realized I was way off base.

很快我意识到自己已经离基地很远了。

The real worry was not condoms.

真正令人担忧的不是避孕套。

The real fear was getting into a car with a client

真正的恐惧是和客户一起上车

and not making it out alive.

却没有活着出来。

This eventually led me to adopt community participatory research strategies.

这最终促使我采用了 社区参与式研究策略。

That's a fancy name for a way to do science

这对科学来说是一个花哨的名字。

that really includes affected communities,

这真正包括受影响社区，

working with and for them,

与他们合作并且是为了他们服务，

from the planning stage to the implementation of strategies.

与他们从规划阶段到战略实施，

Evaluations of community participatory research are ongoing,

对社区参与式研究的评估正在进行中，

but some authors found it has a greater long-term impact

但一些作者发现，与更传统的方法相比

compared to more traditional methods.

它具有更大的长期影响。

This is probably due to this comprehensive data collection

这可能是由于这种 全面的数据收集

that really includes the unique perspectives of community members,

确实包括社区成员的独特观点，

allowing us to better understand complex social and health issues.

使我们能够更好地了解 复杂的社会和健康问题。

I saw this impact firsthand

我亲眼看到了这种影响

in my work with the queer community from Brazil.

在与巴西酷儿社区的合作中。

We formed an advisory board representing diverse regions

我们成立了一个咨询委员会 代表着不同地区

and populations

和人群。

and worked together to develop the questionnaire,

并且一起制作了问卷，

conduct the surveys.

展开调查。

What we found was that queer Brazilians

我们发现，酷儿巴西人面临着

were facing high rates of bullying, violence, school dropout,

很高的欺凌、暴力、辍学、

poverty and mental health struggles.

贫困和心理健康问题。

So we partnered with local organizations

因此，我们与当地组织

to implement strategies such as PreparaNem,

合作实施了诸如PreparaNem，

a free college preparation course

一个免费的大学预备课程

and entrepreneurship training.

和创业培训等战略。

These strategies developed to break the cycle of social exclusion and poverty.

制定这些战略 是为了打破社会排斥和贫困的循环。

After seven years,

七年后，

our own tracking shows

我们自己的追踪显示，

that more than 80 percent of PreparaNem students

超过80％的PreparaNem学生

continued their education,

继续接受教育，

receiving a college or university degree.

获得了学院或大学学位。

The vast majority of those participating in entrepreneurship trainings

绝大多数参与创业培训的人

either launched new businesses or improved existing ones.

要么创办了新企业， 要么改善了现有企业。

To address bullying and violence,

为了解决欺凌和暴力问题，

we developed the Rise app,

我们开发了Rise应用程序，

again in close collaboration with the community.

再次与社区密切合作。

The app has features like a panic button,

该应用程序具有紧急按钮，

safe route mapping,

安全路线图，

mental health screening,

心理健康筛查，

24/7 crisis support.

24/7危机支持等功能。

It has thousands of users,

它拥有成千上万的用户，

many of whom have shared with us

许多人与我们分享了该应用程序

how the app has literally saved their lives.

如何真正挽救了他们的生命。

Help is just a push away.

只需按一下即可获得帮助。

Every single strategy we were able to bring to reality

我们能够实现的每一项策略

was developed, implemented, tested,

的制定、实施、测试和

revised in close collaboration with the community.

修订，都是在和与社区密切合作基础上。

This is, in essence, what community participatory research is.

从本质上讲，这就是社区参与式研究。

I know as a survivor myself that we want to be at the table.

我知道自己作为一名幸存者， 我们想坐上谈判桌。

We want to co-create change in our own communities.

我们希望在共同创造变革。

But that's my own reality.

但这是我自己的现实。

And the singular experience of a domestic violence survivor from Rio

来自一个里约的家庭暴力幸存者的经历

is different from sex workers from Argentina,

不同于来自阿根廷的性工作者、

Indigenous women from the Amazon Bay,

来自亚马逊湾的土著妇女、

people living with HIV Aids, from Uganda,

来自乌干达、

Mozambique, Kenya.

莫桑比克和肯尼亚的艾滋病毒感染者。

To work with those communities,

为了与这些社区合作，

I also had to humble myself and listen,

我必须谦虚地倾听，

truly listen to each community needs, realities, priorities.

真正倾听每个社区的需求、 现实和优先事项。

And I have learned so much.

而且我学到了很多东西。

I've cried and laughed a lot.

我哭了又笑了很多。

I have met amazing, resilient,

我遇到了不可思议、有韧性、

powerful humans,

强大的人们，

and together we developed new services,

我们共同开发了新服务，

improved the existing ones,

改进了现有服务，

and even helped to change local and national legislations.

甚至帮助修改了地方和国家立法。

But I was not their savior.

但我不是他们的救星。

They were their own heroes.

他们是他们自己的英雄。