Our fight for disability rights -- and why we're not done yet | Judith Heumann

譯者: Lilian Chiu 審譯者: Melody Tang

I was born in 1947, a long time ago,

我生於 1947 年，很久以前了。

and when I was 18 months old, I had polio.

在我 18 個月大的時候， 我得了小兒麻痺症。

I was in an iron lung for three months

有三個月的時間 我靠著人工呼吸器維生，

and in and out of the hospital for three years.

有三年的時間我頻繁地出入醫院。

Now, we had lots of neighbors in our Brooklyn neighborhood,

那時我們住在布魯克林， 附近有很多鄰居，

and some of them were really very helpful for my parents.

當中有些人給了 我的父母很大的幫助。

Some of them were really afraid of contagion,

但也有些人很怕被傳染，

and they wouldn't even walk in front of our house.

他們甚至不願意走過我家前面。

They would literally walk across the street.

他們寧願繞路從對面走過去。

I think this was a time when my family really began to realize

我想，就是在這個時期， 我家人開始真正了解到，

what disability meant to some people:

對某些人而言， 身心障礙意味著什麼：

fear.

恐懼。

And it wasn't even a sure thing that I would live at home,

當時甚至不確定我會住在家裡，

although I didn't learn about this until I was 36 years old.

我在 36 歲時才知道這件事。

I was having a discussion with my father one night,

有一天晚上，我和我父親在討論，

and he said, "You know, when you were two years old,

他說：「你知道嗎，當你兩歲時，

one of the doctors suggested to your mom and I

有一位醫生建議你媽媽和我

that you live in an institution,

把你送到一間機構，

that they could just go ahead with their lives

這麼一來，他們（我父母） 就可以繼續過生活，

養育他們的孩子，

and raise their kids

and kind of be done with having to deal with all the disability-related things.

不用再煩心處理所有 和殘疾相關的事務了。」

I didn't believe my father, not because he was a liar,

我那時不相信我父親說的， 並不是因為我認為他騙我，

but I'd never heard this story,

但我從來沒有聽過這件事，

and my mother in fact validated that.

其實我母親也證實了此事。

She never wanted to tell me.

她只是一直不想告訴我。

But in reality, I don't know why I was really surprised by this story,

但實際上，我不知道為什麼 這個故事會讓我這麼驚訝，

because when I was five years old,

因為當我 5 歲時，

and my mother, like mothers and fathers all across the United States,

和美國各地的所有父母親一樣，

was taking me to school to enroll,

我母親帶我去學校辦入學，

she pushed my wheelchair to the school in walking distance to our house,

她用輪椅把我推到 走路就可以到的學校裡。

pulled the wheelchair up the steps into the school,

她把輪椅拉上階梯，進入學校，

and we were greeted by the principal.

校長在那裡歡迎我們。

Not really greeted.

其實不算是歡迎。

But the principal said, no, I couldn't come to that school

校長說，不行，我不能上那間學校，

because it wasn't accessible.

因為學校不方便讓輪椅進出。

But he told us not to worry,

但他叫我們不要擔心，

because the Board of Education in fact would send a teacher to my house.

因為教育局會派一位老師到我家。

And they did

結果的確派了，

for a total of two and a half hours

老師來的時數總共兩個半小時，

a week.

每週一次。

(Audience murmurs)

（觀眾私語）

But for good behavior,

但因為我行為表現良好，

they threw in an occupational therapist

他們也派了一位職業治療師來我家

who taught me that very essential skill

教我非常重要的技能：

of cross-stitching.

十字繡。

(Laughter)

（笑聲）

I don't cross-stitch today.

我今天不會做十字繡給大家看。

(Laughter)

（笑聲）

I didn't actually get to go to school in a real building

我一直沒在校舍裡上過學，

until I was nine years old,

直到我九歲，

and then I was in classes only with disabled children

我才進到只有身心障礙學生的班級，

in a school that had mainly nondisabled children.

而那間學校大多數的學生 是沒有身心障礙的孩子。

And in my classes,

在我班上，

there were students up to the age of 21.

學生的年齡在 21 歲以下。

And then, after 21,

21 歲以後，

they went to something called sheltered workshops

他們會去所謂的庇護工廠

with menial work

做卑賤的工作，

and earning either nothing or below minimum wage.

薪水低於最低薪資，甚至無薪。

So I understood discrimination.

所以，我那時就了解到歧視。

My parents understood discrimination.

我父母了解到歧視。

My parents came from Germany.

我父母來自德國。

They were German Jews who left in the 1930s,

他們是猶太裔德國人， 在 30 年代離開德國，

escaping the Holocaust.

為了逃離種族大屠殺。

My parents lost family and they lost parents.

我父母失去了家，失去了雙親。

Both my parents lost their parents in the Holocaust.

我的父親及母親 各自的雙親都死於大屠殺。

And so they realized

所以他們了解到，

that they could not be silent

當我的人生中遇到不對的事情時，

as things were going wrong for me in my life.

他們不能沉默。

Not me personally,

不是我個人犯錯，

but what was going on around me.

而是我周圍發生的事情出錯。

They learned that because I used a wheelchair,

他們被告知，因為我坐輪椅，

none of the high schools in New York City, in the entire city,

而紐約市整個城市裡，

were wheelchair accessible,

沒有一間高中能讓輪椅進出。

so what was supposed to happen

所以，應該要做的是

is I was supposed to go back onto home instruction

讓我在家裡接受居家輔導，

along with many other students.

許多其他身心障礙學生也一樣。

So my parents banded together with other parents.

所以，我父母和其他父母團結起來。

They went to the Board of Education

他們去教育部，

and they demanded that the Board of Ed make some of the high schools accessible.

要求教育部讓一些高中 具備無障礙設施。

And they did.

他們也照做了。

And so I and many others

所以我和許多其他人

were finally able to go to high school, a regular high school,

終於能夠去進入高中，一般的高中，

and take regular classes.

上一般的課。

So what happened next?

接下來發生了什麼事？

I was learning more and more about what discrimination was,

我學到了越來越多的歧視，

and equally important, I was learning that I needed to become my own advocate.

同樣重要的是，我學到 我必須爲我自己抗爭。

I was entering college, Long Island University,

我上了大學，長島大學，

and I had always wanted to be a teacher,

我一直都想要當老師，

and so I minored in education and I took all the appropriate courses,

所以我副修教育， 能選的課我都選了，

and then when it was time for me to go for my license,

接著，到了我考教師證照的時候，

I had to take a written exam,

我需要參加一場筆試、

an oral exam

一場口試，

and a medical exam.

還有體檢。

At that time, all three of those exams

那時 ，所有三項考試

were given in completely inaccessible buildings,

都在我完全無法 進入的建築物中進行，

so I had friends who carried me up and down the steps

所以我請朋友扛著我上下樓梯，

for these exams,

以參加那些考試，

not in a motorized wheelchair.

而不是坐電動輪椅。

(Laughter)

（笑聲）

In a manual wheelchair.

我坐的是人工輪椅。

But I passed my oral exam.

我通過了口試。

I passed my written exam.

我通過了筆試。

My medical exam was something completely different.

我的體檢就完全不同。

One of the first questions the doctor asked me

醫生問我的第一個問題是，

was, could I please show her how I went to the bathroom.

我能不能示範給她看， 我如何上廁所。

I was 22 years old

我那時 22 歲，

and you know when you go for any kind of an interview,

你們知道， 當你要去任何一種面談前，

you think about all the kinds of questions that people could ask you?

你會先設想對方可能會 問你的各種問題，對嗎？

(Laughter)

（笑聲）

That was not one of them.

我沒想到那個問題。

And I was freaked out in the first place

我一聽到就呆住了，

because I had heard

因為我早已聽說

that there were actually no disabled people using wheelchairs

沒有任何坐輪椅的身障人士

who were teachers in New York,

在紐約市裡的學校教書，

so each step along the way I was expecting something bad.

所以在一路上的每一步， 我都預想了不好的結果。

So I said to her,

所以我對她說，

is it a requirement that teachers show their students

老師一定要向他們的學生展示

how to go to the bathroom?

如何去上廁所嗎？

If it is, I can do that.

如果有這種要求，我可以做。

So no surprise,

不意外地，

I was failed

我沒拿到教師證照，

because I didn't pass the medical.

因為我的體檢沒有通過。

The official reason that I was denied my job

他們拒絕給我這份 證照的官方理由是，

was paralysis of poliomyelitis sequelae of -- I'm sorry.

小兒麻痺癱瘓，源於——抱歉是

Paralysis of both lower limbs, sequelae of poliomyelitis.

雙下肢癱瘓，源於小兒麻痺。

Honestly, I didn't know what the word "sequelae" meant,

老實說，我不知道「源於」 這個詞是什麼意思。

所以，我去查字典， 它的意思是「因...所造成」。

so I went to the dictionary, and it meant "because of."

So I'd been denied my license because I couldn't walk.

因為我無法走路， 所以他們拒絕給我證照。

So what was I going to do?

那時我該做什麼呢？

This is a really important time in my life,

這是我人生中非常重要的時點，

because it would be the first time

因為那會是我第一次

that I really would be challenging the system, me,

真的去挑戰體制，我自己。

and although I was working with a lot of other friends who had disabilities

雖然許多和我一起奮鬥 也有身心障礙的朋友

who were encouraging me to move forward with this,

都鼓勵我去做，

it was nonetheless quite frightening.

但我還是挺害怕。

But I was really very lucky.

不過我非常幸運。

I had a friend who was a disabled student at Long Island University

我有位朋友， 他曾是長島大學的身心障礙學生，

and was also a stringer at the "New York Times,"

也是《紐約時報》的特約記者，

and he was able to get a reporter

他找了一位記者

to write a really good piece about what had happened

針對發生在我身上的事情， 寫了一篇很棒的報導，

and why he thought what had happened was wrong.

包括為什麼他認為這種事是錯的。

The next day there was an editorial in the "New York Times"

隔天，《紐約時報》刊出了一篇社論，

with the title of "Heumann v. The Board of Education"

標題是「霍伊曼對教育部」，

and the "New York Times" came out in support

《紐約時報》公開支持我

of my getting my teaching license.

取得我的教師證照。

(Applause)

（掌聲）

And then the same day,

接著，同一天，

I got a call from an attorney who was writing a book about civil rights.

一位律師打電話給我， 他在寫一本關於公民人權的書。

And he was calling me to interview me,

他打電話來要訪問我，

and I was interviewing him.

而我也同時訪問他。

He didn't know that.

但他並不知情。

And at the end of our discussion, I said,

在我們討論的尾聲，我說：

"Would you be willing to represent me? I want to sue the Board of Education."

「你願不願意代表我？ 我想要告教育部。」

And he said yes.

他答應了。

Now, sometimes I say that the stars were aligned around this court case,

有時我會說，這件法庭 案件真是有老天眷顧，

because we had an amazing judge:

因為我們有位很棒的法官：

the first African American female federal judge --

第一位非裔美國女性聯邦法官——

(Laughter)

（笑聲）

Constance Baker Motley.

康斯坦斯·貝克·莫特利。

(Applause)

（掌聲）

And she knew discrimination when she saw it.

當有歧視時，她馬上看得出來。

(Laughter)

（笑聲）

So she strongly encouraged the Board of Ed

所以她強烈鼓勵教育部

to give me another medical exam,

再讓我做一次體檢，

which they did.

他們照做了。

And then I got my license,

然後我就拿到了證照。

and while it took a number of months

雖然花了好幾個月

for me to actually get a principal to offer me a job,

才有一位校長願意給我一份工作，

I finally did get a job and I started teaching that fall

但我終於得到了一份工作。

那年秋天我開始在 那間我曾就讀的學校教書，

in the same school that I had gone to,

second grade.

我教的是二年級。

So --

所以——

(Applause)

（掌聲）

That's a whole other TED Talk.

那是另一場 TED 演講了。

(Laughter)

（笑聲）

But I was learning as my friends were,

我和我的朋友們，

以及全國各地我不認識的 身心障礙人士學習到

and people I didn't know around the country,

that we had to be our own advocates,

我們必須爲自己抗爭，

that we needed to fight back people's view

我們必須反擊大眾的想法：

that if you had a disability, you needed to be cured,

如果你有身心障礙， 你就需要被治療，

that equality was not part of the equation.

以及身心障礙人士 和大眾是不平等的觀點。

And we were learning from the Civil Rights Movement

我們借鏡於民權運動

and from the Women's Rights Movement.

和女權運動。

We were learning from them about their activism

我們學習他們的主動精神，

and their ability to come together,

以及他們如何團結在一起，

not only to discuss problems

不只是討論問題，

but to discuss solutions.

還要討論解決方案。

And what was born is what we call today the Disability Rights Movement.

這些行動產生了現今我們所知的 「身心障礙者權利運動」。

So I'd like to tell you a couple of riddles.

我想要問各位幾個謎題。

How many people do you think it takes

你們認為，需要多少人

to stop traffic on Madison Avenue

才能阻斷麥迪遜大道上的交通，

during rush hour in New York City?

而且是在紐約市的尖峰時刻？

Do you have a guess? How many?

你猜得到嗎？幾個人？

(Audience members shout out answers)

（觀眾喊出答案）

Fifty.

不對！需要 50 個人。

One would be too little.

1 個就太少了。

Fifty people.

需要 50 個人。

And there were no accessible paddy wagons,

因為沒有無障礙囚車，

so they had to just kind of deal with us.

所以他們必須與我們協商。

(Laughter)

（笑聲）

(Applause)

（掌聲）

But let me tell you another riddle.

我再說個謎題。

How many people does it take to stop a bus in New York City

需要多少人才能阻擋 紐約市的一台巴士，

when they refuse to let you on because you're in a wheelchair?

如果他們因為你坐輪椅 而拒絕讓你上車？

One. That is the right answer.

1 個人。那是正確的答案。

So what you have to do though

不過，你要做的是

is take your wheelchair --

將你的輪椅——

(Laughter)

（笑聲）

Sidle in the right place right in front of the steps

推到巴士的階梯前的某一個地方，

and give it a little push underneath,

向巴士底下稍稍一推，

and then their bus can't move.

那時巴士就動不了了。

(Laughter)

（笑聲）

Any of you who want to learn how to do that,

如果在座有人想學這個技巧，

talk to me after this.

演講後來找我。

(Laughter)

（笑聲）

In 1972, President Nixon vetoed the Rehabilitation Act.

在 1972 年，尼克森總統 否決了復健法案。

We protested. He signed it.

我們抗爭後，他簽了這個法案。

Then the regulations that needed to be promulgated to implement that law

接著，實施該法案所需要的相關規定

had not in fact been signed.

其實並沒有被簽署。

We demonstrated. They were signed.

我們示威後，那些規定就被簽了。

And when the Americans With Disabilities Act, the ADA,

當美國身心障礙人士法案，即 ADA，

our Emancipation Proclamation Act,

等同是我們的解放奴隸宣言法案，

looked as though it might not in fact be passed in the House or Senate,

看起來好像無法被參議院通過時，

disabled people from all across the United States came together

美國各地的身心障礙人士集合在一起，

and they crawled up the Capitol steps.

他們爬上了美國國會大廈的階梯。

That was an amazing day,

那是很了不起的一天，

and the House and Senate passed the ADA.

參議院通過了 ADA。

And then President Bush signed the ADA.

然後布希總統簽署了 ADA。

It's a great picture.

這是張很棒的照片。

President Bush signed the ADA on the lawn of the White House.

布希總統在白宮的草坪上簽署 ADA。

It was an amazing day,

那是很了不起的一天，

and there are about 2,000 people there.

大約有 2000 人參加。

It was July 26, 1990.

時間是 1990 年 7 月 26 日。

And one of the most famous statements he had in his speech

在他的演講中，最有名的聲明之一是

was, "Let the shameful walls of exclusion finally come tumbling down."

「讓排擠人的可恥牆壁倒下吧。」

For any of you in the room

在座各位如果

who are 50 or older, or maybe or even 40 or older,

你的年紀在 50 歲以上， 甚至是在 40 歲以上，

you remember a time when there were no ramps on the streets,

你們可能記得以前，街上沒有斜坡，

when buses were not accessible,

巴士不是無障礙的，

when trains were not accessible,

火車不是無障礙的，

where there were no wheelchair-accessible bathrooms in shopping malls,

購物中心沒有 供輪椅用的無障礙廁所，

where you certainly did not have a sign language interpreter,

當然，也沒有手語翻譯員、

or captioning, or braille or other kinds of supports.

字幕、點字， 或任何其他類型的協助。

These things have changed,

這些都已經改變了，

and they have inspired the world.

也鼓舞了世界。

And disabled people around the world want laws like we have,

全世界的身心障礙人士 都想要有和我們一樣的法律，

and they want those laws enforced.

且希望那些法律能被執行。

And so what we've seen is something called

所以我們看到的名為

the Convention on the Rights of Persons with Disabilities.

「身心障礙者權利公約」，

It is a treaty that was adopted in 2006.

它是在 2006 年通過的協定，

It's celebrating is 10-year anniversary.

現在已經是第十週年了。

More than 165 countries have joined this treaty.

超過 165 國加入了這份協定。

It is the first international human rights treaty

它是第一份完全 以身心障礙人士為中心的

fully focused on disabled people.

國際人權協定。

But I am sad to say that our US Senate

但，我很難過地告訴各位， 我們美國的參議院

has failed to recommend to our president that we ratify the treaty.

沒有能夠向我們的總統 建議要正式批准這項協定。

We signed it in 2009,

我們在 2009 年簽署這個協定，

but it doesn't come into force until ratification,

但在沒有正式批准以前 是不會生效的。

and the president -- no president can ratify a treaty

而總統——任何一位總統 若要批准一個法案，

without the consent of the Senate.

一定需要參議院的同意。

So we feel really strongly

所以我們非常堅決認為

that our US Senate needs to do its job,

美國參議院要盡它的本分，

that our Senate needs to enable us as Americans

我們的參議院必須要讓我們美國人

not only to be able to assist disabled people and governments around the world

不僅能夠讓全世界的 身心障礙人士與政府

to learn about the good work that we've been doing,

看到並學到我們投入的努力。

but it's equally important

同樣重要的是，

that disabled people have the same opportunities

要讓身心障礙人士有同樣的機會

to travel, study and work abroad

可以到國外旅行、讀書、工作，

as anyone else in our country.

就和我們國家中所有其他人一樣。

And as long as many countries don't have the same laws as we do

只要其他國家沒有 和我們一樣的法律，

and don't enforce them if they have them,

或是有法律卻沒有執行，

opportunities for disabled people are more limited.

身心障礙人士的機會就會更受限。

When I travel abroad,

當我出國時，

I am always meeting with disabled women,

我總是會和有身心障礙的女性見面，

and those women tell me stories

那些女性會告訴我

about how they experience violence and rape

關於她們經歷過的 暴力和強暴的故事，

and how in many cases these forms of violence

以及在許多案例中， 這些形式的暴力行為

occur from family members and people that they know,

都是由家庭成員 以及他們認識的人所做的，

who in fact may be working for them.

甚至可能是他們所僱用的人。

And frequently these cases are not adjudicated.

然而這些案例經常都沒有被裁決。

I meet disabled people

我遇到一些身心障礙人士，

who have been offered jobs by businesses

得到企業給他們的工作機會，

because they live in a country where there's a quota system,

是因為他們的國家有僱用 身心障礙員工的比例規定。

and in order to avoid a fine,

為了避免被罰款，

they will hire you

企業就會僱用你，

and then tell you,

然後告訴你：

"You don't need to come to work

「你不用來上班，

because we really don't need you in the facility."

因為我們公司其實不需要你。」

I have visited institutions

我造訪過一些身心障礙養護機構，

where the stench of urine is so strong

尿騷味非常重，

重到在你打開車門下車前，

that before you open the door of your vehicle,

you're kind of pushed back,

你就已經怯步。

and then gone into those institutions

接著，進入這些機構當中，

where people should be living in the community with appropriate supports

裡面的人是應該要住在 有配套設施的社區裡。

and seen people almost naked,

他們幾乎裸體，

people who are chemically drugged

他們被餵以藥物，

and people who are living lives of despair.

過著絕望的生活。

These are some of the things that the US needs to be doing more to correct.

這些是美國必須要花更多心力 來改善的一些狀況。

We know discrimination when we see it,

當我們看到歧視時， 我們都認得出來，

and we need to be fighting it together.

我們必須要一起對抗它。

So what is it that we can be doing together?

所以，我們能一起做什麼？

I encourage you all to recognize

我鼓勵大家承認

that disability is a family you can join at any point in your life.

身心的障礙在你人生的 任何時間點都可能會發生。

I'd like to see by a show of hands how many of you have ever broken a bone?

能否請在座曾經斷過骨頭的人舉手？

And then, when you leave today, I'd like you to maybe write a couple of sentences

今天各位離開時， 我希望各位也許能寫下幾句話，

about what that period of time has been like for you,

關於當你的骨頭斷掉的那段時間 你的感受如何。

because frequently I hear from people,

因為我常常聽到大家說：

"You know, I couldn't do this, I couldn't do that.

「你知道的，我無法做這個， 我無法做那個。

People talked to me differently. They acted differently towards me."

別人跟我說話的方式不同。 他們對我的舉止也不同。」

And that's what I see and other disabled people see

那就是我和其他身心障礙人士

in flashing letters.

每天所面對的切身之痛。

But we -- you in this room,

但我們——在座的各位，

people listening and watching this TED Talk --

正在聽和看著 這場 TED 演講的人——

together we can make a difference.

同心協力，我們就可以造成改變。

Together we can speak up for justice.

同心協力，我們能為了正義發聲。

Together we can help change the world.

同心協力，我們能協助改變世界。

Thank you. I have to go catch my bus.

謝謝。我得去趕巴士了。

(Applause)

（掌聲）