Jane Velkovski: The life-changing power of assistive technologies | TED

Transcriber: Leslie Gauthier Reviewer:

翻译人员: Nicky Li 校对人员: Yanyan Hong

The wheel was invented a long time ago,

轮子很早以前就发明了，

but we’re way behind.

但是我们却落后太多。

Hi, my name is Jane Velkovski.

大家好，我叫简·维尔科夫斯基 （Jane Velkovski）。

I’m 13 years old,

今年13岁，

a student in a public school

是一名公立学校的学生，

and a passionate football fan.

也是一名热情的足球迷。

In addition to that,

除此之外，

I’m a kid with a disability.

我是一名残疾儿童。

My condition is known as SMA:

我的病症叫做 SMA：

spinal muscular atrophy,

脊髓性肌萎缩症，

where the muscles are getting weak but the brain remains strong.

意味着肌肉日渐衰弱， 但大脑依然强大。

I love football.

我热爱足球。

I'm a passionate football fan,

是一名狂热的球迷，

and my passion has brought me so much joy

我的激情带给我很多的快乐，

and so many great experiences --

以及许多很棒的经历——

so far, more than I could have ever imagined.

到目前为止，超乎我的想象。

For example, I was offered to join a brilliant campaign by UEFA,

例如，我被邀请加入 UEFA 的精彩活动，

that is the Union of European Football Associations,

即欧洲足球协会联盟，

to raise awareness about equality and accesss issues.

以提高人们对平等和无障碍问题的认识。

It meant,

那意味着，

among other things,

除其他事项外，

I got the honor of public recognition,

我有幸得到了公众的认可、

public space

公共场所，

and I got an opportunity

我得到了一个机会

to meet several famous players who are my heroes.

去见到几个自己的偶像球员。

I have also had the opportunity

我也有过机会

to speak at the General Assembly of the United Nations in New York

在纽约联合国大会上发言，

as part of the World Children’s Day celebration in 2019.

作为 2019 年世界儿童节 庆祝活动的一部分。

These are just a few of the amazing moments

这些只是我所经历过的

I’ve been able to do.

部分精彩瞬间。

But the thing is,

但问题是，

it’s not just a coincidence

这不仅仅是巧合，

or simple luck that this happened to me.

或者只是运气好，让我碰上了这种事。

I was able to do all of this not because it was easy

我能做到这一切不是因为容易

or simple to perform,

或简单执行，

but because some important things were given to me,

而是因为我获得了一些重要的事情，

like the support of my family, of course,

当然，像是家人的支持，

inclusive education

包容性教育，

and the environment I was raised in --

以及我成长的环境——

but also very much because of my wheelchair.

但很大程度上归功于我的轮椅。

It literally has made all of this possible.

它让这一切成为可能。

I’m independent with my chair.

我可以独立使用我的轮椅，

I’m free to go wherever I want to.

我可以自由地去任何我想去的地方。

I’m able to do things I couldn’t otherwise.

我能够做我做不到的事情，

My motorized wheelchair gives me three incredibly important things:

我的电动轮椅给了我 非常重要的三件事：

freedom,

自由、

independence

独立

and ability.

和能力。

Some people ask,

有人问，

“isn’t it just a wheelchair?”

“不就是个轮椅吗？”

It seems like a small thing,

看似一件小事，

no big deal.

没什么大不了。

But it’s not.

但事实并非如此。

It’s a big deal to me.

这对我来说很重要。

It's what made all of this possible.

正是它使这一切成为可能。

But the question is:

但问题是：

Do you think every kid like me has a wheelchair?

你以为每个像我这样的孩子 都有轮椅吗？

No.

不是。

I did a little research

我做了一点研究，

and I found out that today,

今天才知道，

over one billion people require assistive technology

超过十亿人需要辅助技术

to achieve their full potential,

来充分发挥他们的潜力，

but 90 percent do not have the access

但 90% 的人无法获得

to the assistive technology that they need.

他们需要的辅助技术。

That means only one in 10 people with disabilities,

这意味着每 10 人中只有 1 人残疾人、

who are in need of assistive technology,

需要辅助技术的人，

have them.

拥有它们。

I’m that one in 10;

我就是那十分之一；

I’m the lucky one.

我是个幸运儿。

But still in my country,

但仍然在我的国家，

I’m not eligible to get a power chair until I’m in school,

我没有资格获得电动椅 直到我上学时，

which means around six years old.

这意味着六岁左右。

So from two to six years old,

所以从两岁到六岁，

how am I supposed to move myself around independently?

我该如何独立行动？

I’m supposed to be pushed by another person

我不得不借助他人的力量起来，

when I want to get out of bed

六岁之前，当我想起床时，

or go outside my home before the age of six?

或走出家门怎么办？

Do you think this is OK?

你觉得这样可以吗？

No, not at all.

不，一点也不。

So let me tell you how I got my chair.

那么让我告诉你 我是如何得到我的轮椅的。

I was around two when I started to wheel around.

我两岁左右，我就开始坐轮椅出行。

Every day, out with my neighbors,

每天和邻居一起出去玩，

but first using my manual wheelchair pushed by my mom --

但首先使用的是我的手动轮椅 由我妈妈推着——

which, to be honest, kind of makes it hard

老实说，这有点为难，

to be just a kid hanging out with his friends

对于一个单纯想和朋友闲逛的孩子，

when your mom was always right there.

还得有妈妈时时刻刻陪着。

My parents had been looking for ways to get me a power wheelchair

我的父母一直在想办法 给我买一辆电动轮椅，

a long time before school,

离上学还有很长时间，

but it took them years to finally have it.

但他们花了很多年才最终拥有它。

When I was five years old,

当我五岁的时候，

a year before I started primary school,

在我上小学的前一年，

I got this power chair.

我得到了这把电动轮椅。

And it was not from the government or health insurance

而且不是来自政府 或医疗保险

or even because my parents could afford it,

或者也并非因为我的父母 只买得起它，

but because it was a donation from another family overseas,

而因为它是另一个海外家庭捐赠的、

from a child with SMA who had outgrown the chair in the United States.

来自一名患有 SMA 的儿童的轮椅。

It was a gift in every sense.

从各种意义上讲，这都是一份礼物。

Their donation gave me the freedom I needed so, so much.

他们的捐赠给了我 非常非常需要的自由。

Now my mom says I have a better social life than all her friends and herself.

现在我妈妈说我的社交生活 比她所有的朋友和她自己都好。

When I was a very small kid,

当我还是个很小的孩子的时候，

my parents, like others, were usually speaking on my behalf

我的父母和其他人一样， 通常代表我发言，

to the people in our surroundings.

代表我与周围的人沟通。

Even to the kid down there,

甚至对儿时的玩伴，

answering questions about my chair,

帮我回答有关我轮椅的问题，

my legs,

我的双腿，

my condition --

我的残疾 ——

all of that.

所有那些。

They were saying, “Oh yeah, sure, he can play.

他们说， “哦，是的，当然，他可以踢球。

His legs are a bit weak,

他的腿有点无力，

but he can do the same things as you

但他也能像你一样

only in a different way.”

只是以不同的方式。”

I think that pretty much gave me an idea of myself

我认为这让我对自己的认识

and how to live my life

以及如何过我的生活，

and what to say to the world.

以及对世界说些什么。

That was the beginning of my wonderful social life.

我精彩的社交生活由此开始。

Later, in kindergarten,

后来，到了幼儿园，

I was able to drive my power chair freely

我可以自如地驾驶电动轮椅，

and enjoy life.

并享受生活。

By the age of 10,

到了10岁的时候，

I knew how to keep myself safe,

我知道如何保证自己的安全，

so I just needed a bit of assistance for transfers and books.

所以我只需要 在转移场地和借书时获得一点帮助。

Otherwise, I was independent

不然，我就彻底独立了，

and so happy going everywhere with my friends.

很高兴和我的朋友去任何地方。

I have wonderful friends from my school and my neighborhood.

我在学校和社区都有很好的朋友。

I really enjoy spending time with them.

我真的很喜欢和他们在一起。

But can you imagine

但你能想象

how my childhood would look like without my power chair?

没有电动轮椅的话， 我的童年会是什么样子？

I cannot.

我不能。

I’m forever grateful to the family that donated my power chair,

我永远都会感激给我捐赠轮椅的家庭，

but my freedom

但是我的自由，

and independence

独立性，

and ability should not depend on luck

和能力不可以依靠运气，

or charity.

或者慈善机构，

No one’s should be.

没有人应该这样，

This assistive product needs to be available

这种辅助产品需要被提供给

to everyone who needs it.

每个需要它的人，

By the age of two,

在两岁的时候，

most children are able to walk on their own.

大多数孩子都可以自己走路，

Those children who have some sort of disability and can’t walk,

对于那些残疾而不能走路的孩子，

they should be given an AT,

他们应该得到AT，

an assistive technology,

一种辅助器具

in order to move.

来行动。

If they have a proper wheelchair from an early age,

如果从小开始， 他们就能得到一个合适的轮椅，

they will have a great opportunity to discover the world around them.

他们就能有很好的机会 来探索世界、

Freedom of movement,

行动的自由，

no matter on legs or on wheels,

无论是通过双腿还是轮椅，

is a human right,

都是一项人权。

which means policymakers have to provide what children with disabilities need

这也说明了政策制定者 需要向残疾的孩子提供他们所需的

in order to move.

来行动。

It’s about being able to go to the park to play,

这是为了能够去公园玩耍，

go to school,

去上学，

go to work --

去工作 ——

really, everything.

真的，所有的一切。

This chair is my legs.

轮椅就是我的双腿。

This chair is my life.

轮椅就是我的生命。

The wheel was invented a long time ago.

轮子很早以前就发明了，

And thanks to that invention,

多亏了这项发明，

I can move my stuff around.

我可以随意地动来动去。

So this time, literally, the wheel doesn’t need to be reinvented.

所以这一次，从字面上看， 轮子不需要重新发明。

We just need policies

我们只需要政策

to make sure that wheelchairs are available to everyone in need.

来确保轮椅 每个有需要的人都能坐上轮椅。

But it’s not only just the wheelchair.

但这不仅仅是轮椅的问题，

We also need physical infrastructure.

我们还需要有形的基础设施。

For example ramps,

例如斜坡，

elevators,

电梯，

roads without obstacles,

无障碍道路，

accessible transportation,

无障碍交通，

school buses,

校车，

so our environment becomes more accessible for all.

因此我们的环境变得对所有人都更加便利。

We live in a society that’s not giving enough support

我们生活在一个没有给予足够支持

to fulfill the potential of young people with disability,

让有残疾的年轻人，比如我

like me.

来发掘潜力。

We need to think about how to change that at a global level.

我们需要思考 怎么在全球范围改变这一点，

If society removes the barriers

如果社会清除了

that prevent me from doing everyday things,

阻碍我们日常活动的障碍。

I can become a very productive person

我会更有生产力，

and give back to the society.

也会回报社会。

I have so much to contribute of my intellect,

我想贡献许多智慧、

my brain.

我的脑子。

I believe I can become a lawyer or an architect,

我相信我能成为一名律师或是建筑师，

whatever I want to.

或是任何我想的。

Also, I’m an excellent football coach

而且，我是个很棒的足球教练

and a strategist,

和战略家，

so I have that to contribute, too.

所以我也想这方面贡献，

I have so many things I can do to help my community,

我需要做很多事情来帮助我的社区，

my country

我的国家，

and the world.

和世界。

We may think of that as a mutual benefit.

我们需要把这看成一种双向的好处。

“How?” you may ask.

“如何呢？”你可能会问，

Let me tell you how I see it.

让我告诉你我是怎么看待这个事情的。

An able body doesn’t give you a direct pass to a happy life.

一个健全的身体 并不直接代表快乐的生活，

A person able to walk still needs help with other things --

一个能走路的人 仍然在其他事情上需要帮助——

things that I can do well.

我能够做好的事情。

So for example,

举个例子，

for me, helping a friend on a math test is the same as him helping me

对我来说，帮朋友通过数学考试 和他帮我拿书包

with my backpack.

是一样的。

I don’t see a difference.

我不认为这之间有区别，

He’s struggling, I’m struggling,

他在挣扎，我也在挣扎，

he’s good with his stronger hands,

他的手很强壮，

I’m good with my strong knowledge;

我则有丰富的知识储备；

we’re helping each other.

我们互相帮助。

That’s what friends do,

这就是朋友该做的，

and that’s what societies should do.

这就是社会应该做的。

Once I was out with my friends

有一次我和朋友出去玩，

and an old man approached me

一位老人向我走来，

and started a very nice and polite conversation.

并开始了一次非常友好 和礼貌的交谈。

By simply asking me, first, “What is your condition?”

起初简单地问我， “你怎么了？”

I felt deeply touched by the honesty and simplicity of his question.

我被他的诚实和简单的问题深深打动。

I was only 11

我当时只有11岁，

and felt so respected that he asked me

对于他的问题我感到非常受尊重，

and felt very comfortable to speak on my behalf

对于为我发言并回答他

and answer him.

感到非常舒适。

I explained to him why I can’t walk

我向他解释了为什么我不能走路，

and what I need in order to function.

以及我需要什么才能发挥作用。

Usually people only stare.

通常人们只是凝视。

Yeah, yeah, yeah, I know it's not a standard picture of a child.

是啊，是啊，我知道这不是 一张标准的儿童照片。

My wheelchair is very interesting.

我的轮椅很有趣。

I was even cuter when I was small.

我小时候更可爱。

But still,

但仍然，

it’s not comfortable when people stare.

当人们盯着看时，会感到不舒服。

It’s better not to stare, but to care.

最好不要盯着看，而要关心。

If you see a wheelchair user,

如果您看到轮椅使用者，

rather than staring and wondering about them,

而不是盯着它们看、琢磨它们，

look around

看看周围，

and see if there’s something you can do to help.

看看是否能帮上什么忙：

If there aren’t ramps,

是否有坡道，

if doorways are too narrow,

门口是否太窄，

maybe that’s something you could work to get fixed in your building,

也许这就是你可以做的事情， 在你所在的大楼里，

in your city

在你的城市，

or in your country.

在你的国家。

Each one of us can make a small change,

我们每个人都可以做出一点点改变，

but governments are supposed to make great changes.

而政府应该做出巨大的改变。

I, and people like me, need help from public policymakers

我和像我一样的人需要 公共政策制定者的帮助，

to be able to live with freedom and independence.

就能够自由和独立地生活。

I wish that more people were like that old man,

我希望更多的人 就像那位老人一样，

asking me, and children like me, what we need

问我和像我一样的孩子， 需要什么，

and listening to our answers.

并聆听我们的回答。

I told you at the beginning, I love football.

我在开始说过，我热爱足球。

Just in case I wasn’t clear,

以防我说得不够清楚，

I really love football, a lot.

我真的热爱足球，非常！

And to me, the whole world is like a giant football team.

对于我来说，整个世界 就像一支巨大的足球队。

But I took part in the campaign #EqualGame not only because I love the game

但我参加 #EqualGame 活动 不仅因为我热爱游戏，

but because I strongly believe

而是因为我坚信，

that everyone can play all around the globe:

全世界的每个人都可以玩：

men, women,

不管是男人，女人，

abled, disabled,

有能力的、残疾的、

young, old --

还是年轻的、年老的——

doesn’t matter.

都没关系。

All of them were able to find their way to play the game that they love.

他们都能找到自己喜欢的方式参与。

All they needed was the barriers to be removed.

他们所需要的只是消除障碍。

So I see this world as a playground

所以我把这个世界视为游乐场，

where people and government are like a team,

人民和政府就像一支球队，

and we need to make sure that everyone is able to play.

我们需要确保 每个人都可以参与比赛。

Thank you.

谢谢大家。