我无法开口说话。我是如何让人们倾听的 | 杰西卡·欧文

你正在收听TED Talks每日节目，我们每天为你带来新的想法，激发你的好奇心。

You're listening to TED Talks daily where we bring you new ideas to spark your curiosity every day.

我是你的主持人，Elise Hu。

I'm your host, Elise Hu.

Jessica Irwin身兼多职，她是摄影师、艺术家、作家，也是主题演讲者。

Jessica Irwin is many things, a photographer, artist, author, keynote speaker.

由于一种影响她说话所需肌肉的脑瘫，她无法用言语表达自己。

She also happens to be nonverbal because of a form of cerebral palsy that affects the muscles she needs to talk.

但这从未阻止她分享自己的观点。

That never stopped her from sharing her opinions.

她通过一种设备进行交流，这种设备能将她的文字转化为语音。

She communicates through a device that turns her written words into speech.

那个合成的声音，就是你在她的演讲中听到的，用来传达她写下的文字。

That synthesized voice is the same voice you'll hear in her talk delivering the words she wrote.

下面是她自己的表述。

Here's how she puts it.

我是杰西卡·欧文，我这辈子从来没有说过一个字，连自己的名字都没说过，也没说过那个至关重要的词——‘停’。

I am Jessica Irwin, and I have never spoken a single word in my life, even to say my name, nor the vital word of stop.

说实话，我有太多话想说，脑子里转着好多机智的回嘴。

The truth is I have so much I would like to say, many witty comebacks rolling around inside my head.

在她的演讲中，杰西卡提出了一个尖锐、有趣又紧迫的提醒：不能说话和智力无关，而这个世界在倾听像她这样的人方面，设置得很糟糕。

In her talk, Jessica offers a sharp, funny, and urgent reminder that being nonverbal has nothing to do with intelligence and that the world is badly set up to hear people like her.

她说，这个问题在医疗保健领域尤其严重，那些本应服务各行各业、各种沟通方式、需求和风格的人的诊所和医院。

The problem, she says, is especially bad in health care, the clinics, and hospitals that are supposed to serve people of all walks of life with all kinds of communication modes, needs, and styles.

好消息是，她有一些想法，告诉大家如何更好地与不能说话的人沟通。

The good news, she has some ideas for how anyone can better communicate with nonverbal

当人们听到‘脑损伤’这个词，就会自动联想到智力障碍。

And when people hear the words brain damage, they automatically jump to intellectual impairment.

但一个人脑损伤，并不意味着他的整个大脑都应该被忽视。

But when somebody has brain damage, it should not mean their entire brain should be disregarded.

我的情况影响的是运动，不是智力。

My case affects movement, not intelligence.

这段内容马上在短暂休息后播出。

That's coming up right after a short break.

我所有的朋友是不是都在偷偷讨厌我？

Do all my friends secretly hate me?

为什么我明明一直在跟人聊天，却还是感到孤独？

Why am I lonely when I literally never stop talking to people?

而且这么沉迷网络，对我们到底有什么影响？

And what does being this chronically online actually do to us?

如果你也曾为这类问题纠结不已，那就来听听我们的播客《角落拼图》吧。

If you've ever found yourself spiraling over questions like these, you listen to our podcast, Corner Piece.

我们跟着那些挥之不去的念头，一路探索下去。

We follow our invasive thoughts down rabbit holes

有时候甚至走得太远了。

Sometimes way too far.

去弄清楚当下作为人到底意味着什么。

To figure out what being human looks like right now.

欢迎收听《Corner Piece》，这是一档由TED出品、我们——Answer in Progress的创作者——主持的播客，你可以在任何收听平台找到它。

Listen to Corner Piece, a podcast from TED and hosted by us, the creators of Answer in Progress, wherever you listen.

接下来，是我们今天的TED演讲。

And now, our TED Talk of the day.

我是杰西卡·欧文，我这辈子从没说过一个字。

I am Jessica Irwin, and I have never spoken a single word in my life.

连我的名字都没说过，也没说过“停”这个重要的词。

Even to say my name, nor the vital word of stop.

说实话，我有很多话想说，脑子里转着各种机智的回击。

The truth is, I have so much I would like to say, many witty comebacks rolling around inside my head.

通过在我的沟通设备上打字，我能表达出我想说的约25%。

Through typing on my communication device, I can express about 25% of what I want to say.

剩下的75%只能困在我脑子里，只有我自己能听到。

The other 75% stays trapped inside my head for only me to hear.

这种情况每天都在发生。

This happens every single day.

为什么会这样？

Why is this?

我患有一种程度的脑性麻痹，导致我嘴部的肌肉根本无法让我发出声音说话。

I have a level of cerebral palsy that means my mouth muscles simply won't allow me to physically talk.

这就是唯一的原因。

That is the sole reason.

我们慢慢来练习发出字母 j 的声音。

Let's focus on slowly sounding out the letter j.

你发这个音的时候，感觉到舌头抵在牙齿后面了吗？

Did you feel your tongue on the back of your teeth as you sounded the letter out?

我没法那样移动我的嘴巴和舌头。

I am unable to move my mouth and tongue that way.

这意味着，你们能听到我聪明想法和观点的唯一方式，就是我在沟通设备上以每分钟七个字的飞快速度打出来给你们看。

Which means the only way you can hear my intelligent thoughts and ideas is when I type them out for you on my communication device at the rapid speed of seven words per minute.

机器人声音会念出我打的内容，但它没法表达我快速的机智。

The robotic voice outputs what I'm saying, but it doesn't express my quick wit.

或者，在紧急情况下它能快速表达吗？

Or can it quickly express something in an emergency?

想象一下，你看到小侄女正要碰热炉子。

Imagine seeing your little niece about to touch the hot stove.

格蕾西，停下。

Gracie, stop.

我没办法快速说出那些话。

I am unable to quickly say those words.

我唯一的希望就是能设法用爱把她推开。

My only hope is that I can manage to push her over with love.

很多无法说话的人经常待在医院里。

Many nonverbal people spend a lot of time in hospitals.

我们进入一个在某些方面很出色，但没受过训练去倾听我们这类声音的系统。

We enter a system that is brilliant at some things, but untrained in hearing voices like ours.

所以那里变成了一个让人恐惧的地方。

So it becomes a place of fear.

像我这种情况的很多人，躺下的时候根本没法用我们的沟通设备，我们的声音突然就没了。

Many people in my situation can't physically use our communication devices when we are lying down, our voices are suddenly not there.

想象一下，你躺在医院的病床上，髋部受伤，还有伤口和骨折。

Imagine lying in a hospital bed with an injured hip, with wounds and bone fractures.

一个护士走到你床边，不看你的病历，直接要把你翻到受伤的那一侧。

A nurse comes up to your bed, bypasses your notes, and goes to roll you straight onto your injured hip.

你能做什么来避免你知道即将到来的剧痛呢？

What can you do to prevent the extreme pain that you know is coming your way?

什么都做不了。

Absolutely nothing.

你连一个词都说不出来：停。

You can't say the single word: Stop.

你可以开始哭，但你正在服用止痛药，副作用是易怒。

I mean, you can start crying, but you are on pain medication that has a side effect of irritability.

护士误解了这一点，以为：病人只是不想翻身，所以在闹脾气。

This is misinterpreted by the nurse as: The patient is just fussing because they don't want to roll.

而你唯一能做的就是咬紧牙关，像不能说话的人一样忍受剧痛。

And your only option is to brace for the extreme pain and take it like a nonverbal person.

这不是假设，这就是我亲身经历的可怕现实。

This is not hypothetical, it has been my horrifying reality.

这就是为什么我要把沟通培训带进医院。

This is why I'm bringing communication training into hospitals.

我不希望其他病人经历不必要的痛苦。

I don't want other patients to experience unnecessary pain.

而且这里有个很棒的点。

And here's the brilliant thing.

这个问题是可以解决的。

This problem is solvable.

只需要知道一件简单的事：假设病人是聪明的，问他们“是”或“不是”的问题。

All it takes is knowing one simple thing: Assume the patient is intelligent, ask yes and no questions.

然后让他们向上看表示“是”，向下看表示“不是”。

And ask them to look up for yes and look down for no.

我们一起试试看。

Let's try it together.

如果你跟我一起，向上看表示是。

If you're with me, look up for yes.

现在向下看表示否。

Now look down for no.

太好了。

Awesome.

就这样，没说一个字，我们就完成了一次对话。

Just like that, without a single spoken word, we've had a conversation.

这同样适用于复杂的情况，比如：你疼吗？

This also works for complex scenarios like, Are you in pain?

需要我帮你叫个人吗？

Do you want me to call someone?

我能检查一下你哪里疼吗？

Can I examine where you are hurting?

我可以把字母表念一遍，这样你就能通过抬头看正确的字母来拼出一个词吗？

Can I run through the alphabet so you can spell out a word by looking up on the correct letter?

四个简单的步骤。

Four simple steps.

但它们能救命。

But they can save a life.

有时候人们会让我捏他们的手来表示“是”。

Sometimes people ask me to squeeze their hand to signal yes.

在我这种类型的脑瘫中，我的肌肉有很强的非自主抓握力，所以我的手会不由自主地开始捏紧。

In my type of cerebral palsy, I have a high involuntary muscle grip, so my hand muscles will begin to involuntarily squeeze.

就像捕熊夹一样。

Like a bear trap.

你会想，她为什么不放开我的手？

You will be thinking, Why isn't she letting go of my hand?

而我会想，天哪，我的手松不开，我被卡住了，而他们还不知道。

And I will be thinking, Bollocks, my hand won't let go, I'm stuck, and they don't know.

有时候真的挺搞笑的。

It's hilarious sometimes.

问题是这样的：脑瘫是一种脑损伤。

Here's the thing: cerebral palsy is a brain injury.

当人们听到“脑损伤”这个词，他们就会自动联想到智力障碍。

And when people hear the words brain damage, they automatically jump to intellectual impairment.

但一个人有脑损伤，并不意味着他的整个大脑都应该被忽视。

But when somebody has brain damage, it should not mean their entire brain should be disregarded.

我的情况影响的是运动，而不是智力。

My case affects movement, not intelligence.

不能说话不代表我们没有观点和知识可以分享。

Being nonverbal doesn't mean we don't have opinions and knowledge to share.

我们经常被人大声地居高临下地说话，还被拍拍头，因为人们就是不知道该怎么接近我们。

We often get loudly spoken down to and patted on the head because people just don't know how to approach us.

所以这里有个小建议。

So here's a tip.

直接打个招呼，说‘你好，我叫……’就行了。

Simply start a conversation with Hi, my name is...

然后就让对话自然展开。

And just let the conversation grow from there.

没必要大声说话或者放慢语速。

There's no need to talk loudly or slowly.

就像跟你旁边坐着的人说话一样跟我们聊。

Speak to us like you would the person sitting next to you right now.

你能想象去拍他们的头吗？

Can you imagine patting them on the head?

那得多奇怪啊。

How weird would that be?

而那些拍头的人，很可能就是觉得我行为不正常的那类人。

And these head patters are likely the people to assume I'm the one with unusual behaviors.

看看我们的面部表情和眼神。

Look at our facial expressions and eye movements.

试着开个玩笑，看看我们会不会笑。

Try humor to see if we laugh.

如果我们笑了，那就说明我们能听见你，也能理解你。

If we do, that proves we can hear and understand you.

注意看我们是不是在沟通设备上打字。

Observe whether we are typing on our communication device.

看看我们面前有没有数字屏幕。

Look for a digital screen in front of us.

你有能力让一个人重新发出声音。

You hold the power to give someone back their voice.

这是件很美好的事。

That is a beautiful thing.

所以，无论你是教授、医生、护士，还是未来的朋友，请试着和我们沟通。

So whether you are a professor, doctor, nurse or a future friend, please try to communicate.

记住，我远不止我的外表那么简单。

Remember, I'm so much more than my physical appearance.

我叫杰西卡·欧文。

My name is Jessica Irwin.

我是一名摄影师、艺术家、作家、主题演讲者，同时也是一个人。

I am a photographer, artist, author, keynote speaker, and a human being.

我和你一样。

I am just like you.

那

That

是杰西卡·欧文在TED 2026大会上的演讲。

was Jessica Irwin at TED twenty twenty six.

如果你对TED的选题策划感兴趣，可以访问ted.com/curationguidelines。

If you're curious about TED's curation, visit ted.com/curationguidelines.

今天的节目就到这里。

And that's it for today.

《TED每日演讲》是TED出品的播客。

TED Talks Daily is a podcast from TED.

本期节目由TED研究团队进行事实核查，并由我们的团队制作和编辑，团队成员包括Martha Estevanos、Oliver Friedman、Lucy Little、Emma Taubner和Tansika Sunglarnivant。

This episode was fact checked by the TED research team and produced and edited by our team, Martha Estevanos, Oliver Friedman, Lucy Little, Emma Taubner, and Tansika Sunglarnivant.

此外，还要感谢Daniela Balorezo、Christopher Fazy Bogan、Valentina Bohanini、Banban Chang、Brian Green和Lainie Lott的支持。

Additional support from Daniela Balorezo, Christopher Fazy Bogan, Valentina Bohanini, Banban Chang, Brian Green, and Lainie Lott.

更多内容请访问podcasts.ted.com。

Learn more at podcasts.ted.com.

我是Elise Hupe。

I am Elise Hupe.

明天我会带着一个新想法回来，让你的耳朵焕然一新。

I'll be back tomorrow with a fresh idea for your feet.

感谢收听。

Thanks for listening.

指挥家Robert Franz说，一段好的旋律能抓住我们的注意力。

Conductor Robert Franz says a good melody captures our attention.

然后它会带你穿越时间。

And then it moves you through time.

音乐是时间中的建筑。

Music is architecture in time.

如果你专注于当下所听的内容，你会忘记周围的时间。

If you engage in the moment with what you're listening to, you do lose a sense of the time around you.

我们如何体验时间。

How we experience time.

接下来是

That's next on the

NPR的TED广播时间。

TED Radio Hour from NPR.

无论你在哪里收听播客，都可以订阅或收听TED广播时间。

Subscribe or listen to the TED Radio Hour wherever you get your podcasts.