How technology has changed what it's like to be deaf | Rebecca Knill

Transcriber: Joseph Geni Reviewer: Krystian Aparta

譯者: Lilian Chiu 審譯者: Val Zhang

My name is Rebecca, and I'm a cyborg.

我叫瑞貝卡，我是個半機械人。

(Laughter)

（笑聲）

Specifically, I have 32 computer chips inside my head,

明確來說，我的頭部裡面 有 32 片電腦晶片，

which rebuild my sense of hearing.

用來重建我的聽覺。

This is called a cochlear implant.

這叫做人工耳蝸（人工電子耳）。

You remember the Borg from Star Trek,

你們還記得《星艦迷航記》 裡面的博格人嗎？

those aliens who conquered and absorbed everything in sight?

那些外星人會征服 然後吸收所見的一切，

Well, that's me.

那就是我啦。

(Laughter)

（笑聲）

The good news is I come for your technology

好消息是，我是為了 你們的科技而來，

and not for your human life-forms.

而不是你們的人類生命形式。

(Laughter)

（笑聲）

Actually, I've never seen an episode of Star Trek.

老實說，我連一集 《星艦迷航記》都沒看過。

(Laughter)

（笑聲）

But there's a reason for that:

但這是有原因的：

television wasn't closed-captioned when I was a kid.

我小時候，電視沒有提供 特殊需求的隱藏字幕。

I grew up profoundly deaf.

我幼時是重度聽障。

I went to regular schools, and I had to lip-read.

我讀一般的學校， 我必須要讀脣語。

I didn't meet another deaf person until I was 20.

在我 20 歲之前都沒有 遇過其他聽障人士。

Electronics were mostly audio back then.

當時的電子產品多半會用到聲音。

My alarm clock was my sister Barbara,

我的鬧鐘是我姐姐芭芭拉，

who would set her alarm and then throw something at me to wake up.

她會設定鬧鐘， 然後丟東西把我砸醒。

(Laughter)

（笑聲）

My hearing aids were industrial-strength, sledgehammer volume,

我的助聽器是工業等級，音量超大，

but they helped me more than they helped most people.

但它們對我的幫助， 遠超過對大部分人的幫助。

With them, I could hear music and the sound of my own voice.

有了助聽器，我能聽見 音樂以及我自己的聲音。

I've always liked the idea that technology can help make the world more human.

我一直很喜歡這個概念： 科技能讓世界更有人性

I used to watch the stereo flash color when the music shifted,

我以前會看著音響 在音樂轉變時的閃爍顏色，

and I knew it was just a matter of time before my watch could show me sound, too.

我知道，遲早有一天，

我的手錶也會能讓我看到聲音。

Did you know that hearing occurs in the brain?

你們知道嗎，聽力發生在大腦內？

In your ear is a small organ called the cochlea,

在耳朵裡面有個小器官，叫做耳蝸，

and the cochlea is lined with thousands of receptors called hair cells.

耳蝸上面排列著數千個 接收器，叫做毛細胞。

When sound enters your ear,

當聲音進入耳朵，

those hair cells, they send electric signals to your brain,

那些毛細胞就會 發送電訊號給大腦，

and your brain then interprets that as sound.

接著大腦就會理解詮釋那聲音。

Hair-cell damage is really common:

毛細胞受損是很常見的：

noise exposure, ordinary aging, illness.

暴露在噪音中、一般的老化、疾病。

My hair cells were damaged before I was even born.

我的毛細胞在我 出生之前就損壞了。

My mother was exposed to German measles when she was pregnant with me.

我母親懷我時接觸到德國麻疹。

About five percent of the world has significant hearing loss.

全世界聽障導致失能的人大約有 5%。

By 2050, that's expected to double to over 900 million people,

預期到 2050 年， 人數會加倍到 9 億人，

or one in 10.

大約是 1/10。

For seniors, it's already one out of three.

長者中聽障的比例已是 1/3。

With a cochlear implant,

裝上人工耳蝸，

computer chips do the job for the damaged hair cells.

電腦晶片就能接手 受損毛細胞的工作。

Imagine a box of 16 crayons,

想像有盒 16 色的蠟筆，

and those 16 crayons, in combination,

那 16 色組合起來

have to make all of the colors in the universe.

可以形成世上所有的色彩。

Same with the cochlear implant.

人工耳蝸也是一樣的道理。

I have 16 electrodes in each of my cochleas.

我的每個耳蝸中都有 16 個電極。

Those 16 electrodes, in combination, send signals to my brain,

那 16 個電極共同組合 發送訊號給我的大腦，

representing all of the sounds in the universe.

呈現出世上所有的聲音，

I have electronics inside and outside of my head

我的頭部內外都有電子裝置，

to make that happen,

才能實現這一點，

including a small processor, magnets inside my skull

包括我的頭骨內部 有小型處理器和磁鐵，

and a rechargeable power source.

還有可充電式的電源。

Radio waves transmit sound through the magnets.

無線電電波透過 那些磁鐵來傳輸聲音。

The number one question that I get about the cochlear implant

通常大家聽到人工耳蝸的磁鐵時，

when people hear about the magnets

最常問我的問題

is whether my head sticks to the refrigerator.

就是：我的頭會不會吸在冰箱上。

(Laughter)

（笑聲）

No, it does not.

不，並不會。

(Laughter)

（笑聲）

(Applause)

（掌聲）

Thank you, thank you.

謝謝，謝謝。

(Applause)

（掌聲）

I know this, because I tried.

我知道，因為我試過。

(Laughter)

（笑聲）

Hearing people assume that the Deaf

聽人會假設聽障

live in a perpetual state of wanting to hear,

一直活在想要聽見的狀態中，

because they can't imagine any other way.

因為他們無法想像其他可能性。

But I've never once wished to be hearing.

但，我從未想要聽見過。

I just wanted to be part of a community like me.

我只想成為我的同類中的一份子。

I wanted everyone else to be deaf.

我希望別人也都是聽障。

I think that sense of belonging is what ultimately connects our stories,

我想「歸屬感」最終 連結了我們的故事，

and mine felt incomplete.

單方面的詮釋並不完整。

When cochlear implants first got going,

80 年代初期當人工耳蝸 剛開始推出時，

back in the '80s,

the operation was Frankenstein-monster scary.

這個手術的可怕程度 是科學怪人等級。

By 2001, the procedure had evolved considerably,

到了 2001 年，這項手術 已經進步相當多了，

but it still wiped out any natural hearing that you had.

但它仍然會破壞 你殘存的天生聽覺。

The success rate then for speech comprehension was low,

當時的言語理解成功率很低，

maybe 50 percent.

也許有 50% 的機率。

So if it didn't work, you couldn't go back.

如果沒有成功，也回不去了。

At that time, implants were also controversial in the Deaf culture.

在當時，聽障文化中， 植入物也很有爭議性。

Basically, it was considered the equivalent

基本上，做植入手術彷彿是

of changing the color of your skin.

改變膚色一樣。

I held off for a while,

我拖了好一陣子，

but my hearing was going downhill fast,

但我的聽力惡化地很快，

and hearing aids were no longer helping.

助聽器已經幫不上忙了。

So in 2003, I made the tough decision to have the cochlear implant.

於是，2003 年， 我做出了艱難的決定，

我要裝人工耳蝸。

I just needed to stop that soul-sucking cycle of loss,

我得停止因失去聽力而 不斷耗損靈魂的循環，

regardless of whether the operation worked,

手術是否成功都無所謂，

and I really didn't think that it would.

我自己都不認為會成功。

I saw it as one last box to check off

我將其視為最後的確認事項，

before I made the transition to being completely deaf,

在我變成全聾之前，

which a part of me wanted.

我內心有一部分也希望如此。

Complete silence is very addictive.

完全的寂靜是很誘人的。

Maybe you've spent time in a sensory deprivation tank,

如果你曾經待過 感覺剝奪箱（隔離箱），

and you know what I mean.

你就會懂我的意思。

Silence has mind-expanding capabilities.

寂靜有著拓展心智的力量。

In silence, I see sound.

在寂靜中，我能看見聲音。

When I watch a music video without sound,

當我看著沒有聲音的 MV，

I can hear music.

我能聽見音樂。

In the absence of sound,

在沒有聲音時，

my brain fills in the gaps based on the movement I see.

我的大腦會用我看見的動作 來填補這些空缺。

My mind is no longer competing with the distraction of sound.

我的大腦不用再辛苦地 對抗聲音造成的分心。

It's freed up to think more creatively.

它自由了，能夠更有創意地思考。

There are advantages to having bionic body parts as well.

擁有仿生的身體部位是有好處的。

It's undeniably convenient to be able to hear,

無可否認，能夠聽見是更方便的，

and I can turn it off any time I want.

且我想要的時候還可以把它關掉。

(Laughter)

（笑聲）

I'm hearing when I need to be, and the rest of the time, I'm not.

需要的時候我才聽， 其他時候就不用。

Bionic hearing doesn't age,

仿生的聽力不會老化，

although external parts sometimes need replacement.

不過外部的零件有時會需要更換。

It would be so cool

如果受損的零件也能自動再生，

to just automatically regenerate a damaged part like a real cyborg,

像真正的半機械人，那一定很酷，

but I get mine FedExed from Advanced Bionics.

但我的零件是 Advanced Bionics 公司用 Fedex 快遞來的。

(Laughter)

（笑聲）

Oh, I get updates

喔，我還能取得更新

downloaded into my head.

是直接下載到我的頭裡面。

(Laughter)

（笑聲）

It's not quite AirDrop -- but close.

它不是蘋果的 AirDrop 網路——但很接近了。

(Laughter)

（笑聲）

With the cochlear implant,

有了人工耳蝸，我可以 把 iPod 的音樂串流

I can stream music from my iPod into my head without earbuds.

送進我的頭部，不用耳塞式耳機。

Recently, I went to a friend's long, tedious concert ...

最近，我去參加朋友的 音樂會，又長又乏味……

(Laughter)

（笑聲）

and unknown to anyone else,

其他人都不知道，

I listened to the Beatles for three hours instead.

但我改聽了 3 小時的披頭四。

(Laughter)

（笑聲）

(Applause)

（掌聲）

Technology has come so far so fast.

科技日新月異。

The biggest obstacle I face as a deaf person

身為聽障人士，我面臨最大的障礙

is no longer a physical barrier.

已不再是身體上的阻礙。

It's the way that people respond to my deafness,

而是大家對我的聽障 所做出的反應，

the outdated way people respond to my deafness --

對我的聽障， 大家過時的反應是——

pity, patronization, even anger --

憐憫、對我施恩、甚至憤怒——

because that just cancels out the human connection

因為這些心態又消弭了

科技所連結的人性。

that technology achieves.

I once had a travel roommate who had a complete temper tantrum,

我有個旅行的室友 曾經脾氣大爆發，

because I didn't hear her knocking on the door

因為她的鑰匙開不了門時， 我聽不見她敲門。

when her key didn't work.

If I hadn't been there, no problem, she could get another key,

如果我不在那裡，沒問題， 她可以再去拿一把鑰匙，

but when she saw that I was there, her anger boiled over.

但她看到我在那裡，就上火了。

It was no longer about a key.

重點不再是鑰匙。

It was about deafness not being a good enough reason

重點是聽障不是個

讓她不方便的好藉口。

for her inconvenience.

Or the commercial about the deaf man

或是那支廣告：一名 聽障的鄰居給他驚喜，

whose neighborhood surprised him with sign language messages

請街上的人都用手語 和他溝通訊息。

from people on the street.

Everyone who sent me the video told me they cried,

把這個影片傳給我的 每個人，都說他們哭了，

so I asked them,

於是，我問他們： 「如果他沒聽障呢？

"Well, what if he wasn't deaf?

What if his first language was Spanish,

如果他的母語是西班牙語，

and everyone learned Spanish instead?

改成大家學西班牙語和他溝通？

Would you have cried?"

那你會哭嗎？」

And they all said no.

他們都說不會。

They weren't crying because of the communication barrier,

他們會哭是因為溝通阻礙，

they were crying because the man was deaf.

他們會哭是因為主角是聽障人士。

But I see it differently.

但我的看法不同。

What if the Borg showed up in that video,

如果博格人出現在那支影片中，

and the Borg said, "Deafness is irrelevant."

博格人說：「聽障無關緊要。」

Because that's what they say, right?

因為博格人都這樣說，對吧？ 一切都「無關緊要」。

Everything's "irrelevant."

And then the Borg assimilated the deaf guy --

接著，博格人同化了 這位聽障人士——

not out of pity, not out of anger,

不是出於憐憫，不是出於憤怒，

but because he had a biological distinctiveness

而是因他具有

博格人想要的生物獨特性，

that the Borg wanted,

including unique language capabilities.

包括獨特的手語能力。

I would much rather see that commercial.

我會比較想看這樣的廣告。

(Laughter)

（笑聲）

Why does thinking about ability make people so uncomfortable?

為什麼去思考能力 會讓人這麼不舒服？

You might know a play, later a movie,

各位可能知道一齣舞台劇， 後來有電影版，

called "Children of a Lesser God,"

叫做《悲憐上帝的女兒》，

by Mark Medoff.

馬克．梅多夫的作品。

That play, that title,

那齣劇的名稱

actually comes from a poem by Alfred Tennyson,

其實是出自丁尼生的詩，

and I interpret both the play and title

我認為，那齣劇和它的名稱

to say that humans who are perceived as defective

意思是：被認為有瑕疵的人類

were made by a lesser God

是由次等的神所創造，

and live an inferior existence,

他們的存在也是低等的，

while those made by the real God are a superior class,

而由真神所創造的人

則是高等的，

because God doesn't make mistakes.

因為神不會犯錯。

In World War II,

在二次大戰，

an estimated 275,000 people with disabilities

估計有 27 萬 5 千名殘疾人士

were murdered in special death camps,

在死亡集中營被殺害，

because they didn't fit Hitler's vision of a superior race.

因為他們不符合希特勒 對於優越種族的憧憬。

Hitler said that he was inspired by the United States,

希特勒說，他的靈感來源是美國，

which had enacted involuntary sterilization laws for "the unfit"

美國在 1900 年代初期 針對「不合格的人」

制訂了非自願性節育的法律。

in the early 1900s.

That practice continued in more than 30 states until the '70s,

這項做法至少在 30 州 持續進行，直到 70 年代，

with the last law finally repealed in 2003.

最後的相關法律終於 在 2003 年被廢除。

So the world is not that far removed from Tennyson's poem.

這個世界和丁尼生的詩 其實相去不遠。

That tendency to make assumptions about people based on ability

依據能力來對他人做出假設的傾向

comes out in sentences like

可以在這類句子中看到：

"You're so special," "I couldn't live like that"

「你好特別」、 「我無法那樣過生活」，

or "Thank God that's not me."

或者「感謝老天 那不是發生在我身上」。

Changing how people think is like getting them to break a habit.

改變人的想法就像是 要讓他們改掉習慣。

Before the implant, I had stopped using the voice telephone

在裝上人工耳蝸之前， 我就停止使用聲音式電話，

and switched to email,

改用電子郵件，

but people kept leaving me voice mail.

但大家卻一直在語音信箱留言。

They were upset that I was unreachable by phone

無法用電話聯絡到我，

且我不回覆留言，讓他們很沮喪。

and not returning messages.

I continued to tell them my situation.

我不斷告訴他們我的狀況。

It took them months to adapt.

他們花了數個月才適應。

Fast-forward 10 years,

快轉 10 年，

and you know who else hated voice mail?

你們知道誰也討厭 語音信箱留言嗎？

Millennials.

千禧世代。

(Laughter)

（笑聲）

And you know what they did?

你們知道他們做了什麼嗎？

They normalized texting for communication instead.

他們讓文字訊息變成溝通的常態。

Now, when it comes to ignoring voice mail,

就忽略語音信箱留言這件事來說，

it no longer matters whether you're deaf or just self-absorbed.

不論你是聽障或只關心 自己，並沒有不同。

(Laughter)

（笑聲）

(Applause)

（掌聲）

Millennials changed how people think about messaging.

千禧世代改變了大家 對於文字訊息的看法。

They reset the default.

他們重新設定了預設值。

Can I just tell you how much I love texting?

我能告訴各位我有多 發送愛文字訊息嗎？

Oh, and group texts.

喔，群組訊息也很棒。

I have six siblings --

我有 6 個兄弟姐妹——

they're all hearing,

他們都聽得見，

but I don't think any less of them.

但我不覺得他們有誰會比較差。

(Laughter)

（笑聲）

And we all text.

我們都傳文字訊息。

Do you know how thrilling it is

你們可知道， 有種其他人也都會用的

to have a visual means of communication that everyone else actually uses?

視覺溝通方式存在， 是多棒的事嗎？

So I am on a mission now.

現在，我有個使命。

As a consumer of technology,

身為科技的消費者，

I want visual options whenever there's audio.

凡是用到聲音的時候， 我都希望有視覺的選項。

It doesn't matter whether I'm deaf

不論我是聽障人士 或不想吵醒寶寶，無所謂。

or don't want to wake the baby.

Both are equally valid.

兩者都一樣是正當理由。

Smart designers

聰明的設計師

include multiple ways to access technology,

會提供多種方式 供大家使用科技，

but segregating that access under "accessibility" --

但將這些功能歸類在 「輔助使用」隔離開來——

that's just hiding it from mainstream users.

那只會讓主流使用者 無法接觸到這些功能。

In order to change how people think,

為了改變人們的想法，

we need to be more than accessible,

除了有這些功能，更要 將其流暢地融入在體驗裡。

we need to be connected.

Apple did this recently.

蘋果最近就做到了這一點。

On my iPhone, it automatically displays a visual transcript

我的 iPhone 會自動 用視覺逐字稿的方式

顯示我的語音信箱留言，

of my voice mail,

right next to the audio button.

就在聲音按鈕的旁邊。

I couldn't turn it off even if I wanted to.

即使我想要，也無法把它關掉。

You know what else?

你們知道還有什麼嗎？ 網飛、Hulu、亞馬遜 Prime

Netflix, Hulu, Amazon Prime no longer say

都不再寫「供聽障使用的隱藏字幕」，

"Closed-captioned for the hearing impaired."

They say "subtitles," "on" or "off,"

而寫為「字幕」，「開」或「關」，

with a list of languages underneath, including English.

下面再搭配語言選單，包括英語。

Technology has come so far.

科技已然大幅進化。

Our mindset just needs to catch up.

我們的心態也需要跟上。

"Resistance is futile."

「抗拒是沒有用的。」

(Laughter)

（笑聲）

You have been assimilated.

你們已經被同化了。

(Laughter)

（笑聲）

Thank you.

謝謝。

(Applause)

（掌聲）