How adaptive clothing empowers people with disabilities | Mindy Scheier

譯者: Lilian Chiu 審譯者: Michelle Fan

I love fashion.

我愛時尚。

I actually go to bed every night thinking about what I'm going to wear

我每天晚上上床睡覺時 真的都會想著明天

the next day.

我要穿什麼。

Clothing transforms me,

衣服能改造我、

defines me,

定義我、

gives me confidence.

給我信心。

You may not feel the same way about fashion,

你對於時尚的感覺可能不同，

but I bet you have a favorite T-shirt or a pair of jeans that transforms you --

但我打賭你一定有最愛的 T 恤或牛仔褲，它能夠改造你、

makes you feel good,

讓你感覺很好、

makes you feel confident,

讓你覺得有自信、

makes you feel like you.

讓你覺得你在做自己。

When I was younger,

我比較年輕時，

I wanted to be Betsey Johnson.

我想成為貝絲強生。 （註：時尚設計師）

I thought we were kindred, crazy-hair spirits together.

我以為我們都是志趣相投、 頭髮搞怪的人。

I did go to fashion design,

我確實去做了時尚設計，

I worked in the industry for years

我在那個產業工作了數年，

and loved it.

我很喜歡它。

I married,

我結了婚，

I had three kids.

我生了三個孩子。

But life can be heartbreakingly ironic.

但，人生有時諷刺得讓人心碎。

My middle child, Oliver, was born with a rare form of muscular dystrophy,

我的第二個孩子，奧利佛， 出生時就有一種罕見的肌肉萎縮症，

or MD.

簡稱 MD。

MD affects his muscle strength,

MD 影響他的肌力、

his pulmonary system,

他的呼吸系統，

distorts his body

扭曲他的身體，

and makes everyday life more challenging than most.

讓他連過日常生活 都比大部分人更辛苦。

From the time he could walk,

從他能夠走路開始，

which wasn't until about two and a half,

大約是他兩歲半時，

he had to wear leg braces for stability.

他得要穿上腿支架來協助穩定。

Because he wasn't growing appropriately,

因為他沒有妥善的成長，

he had to wear a feeding tube that was placed on his face.

他得要戴著鼻餵管，裝在他的臉上。

He endured stares, and so did I.

他要承受別人的目光，我也是。

But my husband Greg and I told him

但我和我先生葛雷告訴他，

that no matter what,

不論如何，

he was just like everybody else.

他都和其他人一樣。

But everyday tasks for Oliver

但，我們覺得理所當然的日常差事，

that we all take for granted

對奧利佛而言，

were incredibly challenging.

卻是非常有挑戰性的。

That simple act of dressing yourself -- the very thing that I adore --

自己穿衣服，這麼簡單的動作 ——我很喜歡做的動作——

was a nightmare for him.

卻是他的惡夢。

His form of MD does not affect his mind.

他得的那種 MD 不會影響他的心智。

His brain is an A-plus,

他的頭腦是 A+ 等級的，

which means he's acutely aware of his shortcomings.

那就表示，他能 很敏銳地察覺他的缺陷。

This became very evident when he started school,

當他開始上學時，這狀況就很明顯，

and that daily act of dressing yourself was a constant reminder

每天幫自己穿衣服的時候，總會想起

of what he could and could not do.

他能夠做什麼、不能夠做什麼。

So our solution was for Oliver to wear sweatpants every day:

我們為奧利佛想的解決方案， 就是每天穿寬鬆長運動褲：

to school,

穿去上學、

to parties,

穿去派對、

on vacations --

穿去渡假——

his uniform.

那是他的制服。

For special occasions, he would wear proper pants.

針對特殊的場合， 他會穿得宜的褲子。

But many times, because he couldn't manage the button and zipper,

但，好幾次，因為他無法 扣上釦子或拉上拉鏈，

I would have to take him to the men's room,

我得要帶他去男洗手間，

which was incredibly embarrassing for him

這對他而言非常丟臉，

and the other men that were in there.

且男洗手間還有其他男性在。

But them -- I said, "Oh, please. There's nothing I haven't seen before."

但他們——我說：「喔， 拜託。沒什麼我沒見過的。」

(Laughter)

（笑聲）

For years we muddled through.

我們就這樣胡亂應付了很多年。

But when Oliver was in third grade,

但，當奧利佛上三年級時，

I found out he was more like me than I ever imagined.

我發現，他比我想像的還要更像我。

Oliver, too, cared about fashion.

奧利佛也很關心時尚。

He came home from school one day and said very definitively

有天，他從學校回來，非常肯定地說

that he was going to wear jeans to school like everybody else gets to wear.

他要穿牛仔褲去上學，和大家一樣。

Well, I certainly couldn't go to class with him

嗯，我絕對不可能跟他去上課、

and take him to the boys' room,

帶他去男洗手間，

but there was no way I was telling my eight-year-old

但我也不可能告訴我的八歲孩子

that he couldn't wear what he wanted to wear.

他不能穿他想要穿的。

So that night,

所以，那晚，

I MacGyvered the hell out of his jeans.

我發揮馬蓋先精神 做出了他的牛仔褲。

I remembered when I was pregnant

我記得，當我懷孕時，

and unwilling to stop wearing my own favorite pants,

我不願意放棄穿我最喜歡的褲子，

even though I was busting out of them,

雖然我根本無法把自己塞進去了，

that rubber-band trick.

那橡皮筋絕招。

You moms remember what I'm talking about?

在座的媽媽們知道我在說什麼嗎？

The rubber band through the buttonhole,

用橡皮筋穿過釦子洞，

around the button and back?

繞過釦子纏回來？

Instant stretch.

立即延伸。

So I removed the zipper

所以我把拉鏈移除，

so he could pull it up and down on his own.

讓他能自己把褲子拉起來和脫下去。

I cut up the side seam of the bottom of his pants

我剪開褲子底部的側縫

to accommodate for his leg braces,

讓他的腿支架能放得進去，

applied Velcro --

加上魔鬼氈，

hold your ears, everybody: peel and stick, mind you --

摀上耳朵，各位： 撕開和黏上，請注意——

so that it would close around it.

這樣就可以把隙縫黏起來。

When I showed Oliver my arts and crafts project,

當我給奧利佛看我的藝術工藝作品，

he absolutely beamed.

他完全是眉開眼笑了。

He went into school with his head held so high.

他頭抬得高高的走進學校。

Those jeans transformed him.

那件牛仔褲改造了他。

He was able to get dressed on his own,

他能夠靠自己穿脫，

he was able to go to the bathroom on his own;

他能夠自己去上廁所；

those jeans gave him confidence.

那件牛仔褲給了他自信。

I didn't realize it at the time,

我當時還不知道，

but this was my first foray into the world of adaptive clothing.

但那就是我進入無障礙 衣服世界的初步嘗試。

Adaptive clothing is defined as clothing designed for people with disabilities,

無障礙衣服的定義是 設計的著衣對象是殘疾者、

the elderly

老人，以及任何 自己穿衣服有困難的人。

and anyone who struggles with dressing themselves.

Adaptive clothing did exist,

無障礙衣服確實存在，

but it was missing that mainstream fashion component.

但它們缺乏了主流時尚的元素。

It was very medicinal and very functional

它們非常醫療取向、非常功能性，

but not stylish.

卻不時髦。

And that's a huge problem,

那是個很大的問題。

because what you wear matters.

因為你的穿著是有重要性的。

Clothing can affect your mood,

衣服能影響你的心情、

your health

你的健康，

and your self-esteem.

以及你的自尊。

Now, being a fashion lover, I've known this forever,

身為時尚愛好者， 我一直都知道這一點，

but scientists actually have a name for it.

但，實際上科學家給它取了名字。

It's called "Enclothed Cognition,"

它叫做「穿衣認知」，

the co-occurrence of two factors:

也就是這兩個因子同時發生：

the symbolic meaning of clothing

衣服的象徵意義，

and the physical experience of wearing the clothing,

以及穿著該衣服的實際體驗，

both of which have a direct correlation to how you feel about yourself.

兩者都和你對自己的感受直接相關。

There's actually a professor in the UK by the name of Karen J. Pine.

在英國，有一位教授 名叫凱倫 J. 佩因。

She wrote a book called "Mind What You Wear:

她寫了一本書，書名是

《留意你穿什麼：時尚心理學》。

The Psychology of Fashion."

She states in her book

在她的書中，她寫到，

that when you put clothes on,

當你穿上衣服時，

you adapt the characteristics of what you're wearing,

你就會調整自己去配合 那件衣服的特徵，

whether you realize it or not.

不論你自己是否有察覺。

That's why you feel like a rock star

那就是為什麼當你 穿上完美合身的牛仔褲時，

你會覺得自己像個搖滾巨星。

when you put on those perfect-fitting jeans.

That's why you feel invincible when you put on that power suit,

那就是為什麼穿上動力服時 你會覺得自己所向無敵，

and that's why you feel beautiful

那就是為什麼你穿著黑色小洋裝時，

in that little black dress.

會覺得自己很美。

But that's exactly why Oliver felt so isolated

但，那也正是為什麼奧利佛 無法穿他想要穿的衣著時，

when he couldn't wear what he wanted to wear.

會如此感到被孤立。

He even said to me one time,

有次，他甚至對我說：

"Mom, wearing sweatpants every day

「媽，每天穿寬鬆長運動褲

makes me feel like I'm dressing disabled."

讓我覺得穿著殘疾。」

There are one billion people on our planet

在地球上有十億人

有著某種類型的殘疾。

that experience some type of disability.

One billion.

十億人。

If 10 percent of that billion experience clothing challenges,

如果那十億人中有 10% 有穿衣服的困難，

that's an enormous amount of people that may not be as confident,

那就表示有相當多人， 其實都沒有達到他們

as successful

應該要能夠達到的

or even as happy as they could be.

自信、成功，或甚至快樂。

The morning after Oliver left for school wearing those jeans,

那個早晨，在奧利佛穿著 牛仔褲出發去學校之後，

I realized that I could do something about that.

我發現，原來我可以 為這個狀況做點貢獻。

And so I did.

於是，我就做了。

In 2013, I founded an organization called Runway of Dreams.

2013 年，我成立了一個組織， 叫做「夢想的伸展台」。

The mission was to educate the fashion industry

組織的使命是要教育時尚產業，

that modifications could be made to mainstream clothing

可以針對主流衣服做些修改，

for this community that has never been served.

來服務這個未曾被服務過的社群。

And it began with an entire year of research.

一開始，我們做了一整年的研究。

I went to schools, I went to facilities, I went to hospitals.

我去拜訪了學校、機構、醫院。

I literally chased down people on the street who were in wheelchairs

我真的上街去尋找坐輪椅的人、

or if they had walkers

用助行器的人，

or even if they had a slight limp.

或甚至有一點跛腳的人。

(Laughter)

（笑聲）

I know I must have looked insane,

我知道我看起來一定像是瘋了，

but I knew that if I was really going to make a difference,

但我知道，如果我 真的想要造成不同，

I had to truly understand the clothing challenges

我就必須要真正了解穿衣服的困難，

of as many different people as I possibly could.

能接觸越多不同的人越好。

I met a young man who was 18 who has cerebral palsy.

我遇到了一個十八歲的 年輕男子，他有大腦性麻痺。

He was going to Harvard University.

他要去唸哈佛大學。

He said to me, "Can you imagine?

他對我說：「你能想像嗎？

I got myself into Harvard,

我拼進了哈佛，

but my dream is to be able to wear jeans on campus,

但我的夢想卻是能 在校園裡穿牛仔褲，

like the other freshmen will wear."

和其他新鮮人一樣。」

I met a little girl named Gianna,

我遇到了一個小女孩吉安娜，

who was missing her left forearm and her hand.

她沒有左前臂和手掌。

Her mother told me

她母親告訴我，

she could not bear to see her daughter's difference magnified

她無法忍受看到懸在 半空的袖子將她女兒的

by a dangling sleeve,

不同之處給放大，

so she had every single long-sleeve shirt professionally tailored.

所以她把每一件長袖衣服 都讓專業的裁縫修改過。

Can you imagine the time and money she spent?

你能想像她花的時間和金錢嗎？

I also had the great privilege of spending time with Eric LeGrand,

我也很榮幸能和艾瑞克樂格德聚首，

former Rutgers football player who was paralyzed during a tackle in 2010.

前羅格斯的美式足球員，2010 年 因為比賽中的擒抱摔倒而癱瘓。

I had, at this point, seen some unfathomable things,

在這個時點，我已經看過 一些不可理解的事了，

but this, by far, was the most heart-stopping.

但，他的情況， 是目前為止最驚心動魄的。

You see, Eric is a really big guy,

艾瑞克是個高大的傢伙，

and it took two aides and a lifting machine

要用到兩個助手和一台起重機

to get him dressed.

才能幫他穿好衣服。

I sat and watched this process for over two hours.

我坐著看這個過程看了超過兩小時。

When I expressed my shock to Eric,

當我向艾瑞克表示我的震驚時，

he looked at me and said,

他看著我，說：

"Mindy, this is every single day.

「敏蒂，這是每天的日常。

What can I say?

我能說什麼？

I like to look sharp."

我想要看起來很時髦。」

Research done.

研究完成。

I knew that if I was going to make a change in the industry,

我知道，如果我想要 在這個產業中造成改變，

I had to use my background

我得要用上我的背景，

and really figure out how to make these clothes modified.

並真正去想個辦法來修改這些衣服。

So I took the information I gathered over that past year,

所以，靠著過去一年收集到的資訊，

and I figured out that there were actually three categories

我發現，全面來看，其實有三種類別

that were affected across the board.

會受到影響。

The first were closures.

第一類是闔起來。

Buttons, snaps, zippers, hook-and-eyes were a challenge for almost everybody.

釦子、四合釦、拉鏈、鉤釦 對幾乎所有人來說都是很困難的。

So I replaced them with a more manageable technology:

所以，我用更好處理的 技術來取代它們：

magnets.

磁鐵。

Magnets made our Harvard freshman able to wear jeans on campus,

磁鐵讓我們的哈佛新鮮人 能夠在校園裡穿著牛仔褲，

because he could dress himself.

因為他自己就能穿上。

Second: adjustability.

第二類：可調整性。

Pant lengths, sleeve lengths, waistbands

褲長、袖長、腰帶

were a challenge for so many different-shaped bodies.

對於這麼多種不同形狀的 身體而言是個挑戰。

So I added elastic,

所以，我加上了鬆緊帶，

an internal hemming system.

以及一個內部摺邊系統。

This way, Gianna could wear a shirt right off the rack

用這種方式，吉安娜就 能夠穿現成的衣服了，

and just adjust the one sleeve.

只要調整一隻袖子就好。

Last: alternate ways to get the clothing on and off the body,

最後一類：穿脫衣服的替代方式，

outside the traditional way of over your head.

不同於傳統從頭上穿脫的方式。

So I designed a way to go in arms first.

所以我設計了一個方式， 從手臂先穿進去。

This, for somebody like Eric,

對於像艾瑞克這樣的人，

could actually take five steps off his dressing process

這設計就能讓他的穿衣 過程少掉五個步驟，

and give him back the gift of time.

讓他省下寶貴的時間。

So I went out,

所以，我出去買了現成的衣服，

I bought clothing right off the rack,

I sat at my kitchen table, ripped them apart,

坐在我家餐桌旁把這些衣服解體，

did prototype after prototype, until I felt I had great modifications.

我做了一個又一個原型， 直到我覺得修改得夠棒為止。

And then I was ready for the big leagues:

接著，我準備好要進大聯盟了：

the fashion industry.

時尚業。

Rather than designing my own collection,

不是去設計我自己的系列作品，

I knew if I was really going to make a difference,

我知道如果真想造成不同，

I had to go mainstream.

我得要進入主流。

I believed that I just needed to educate the industry

我相信，我只需要讓這個產業知道

of the enormity of this population

這類人口的數量有多巨大，

and the fact that these were consumers

且這些人都是消費者，

that simply weren't being considered.

沒有被考量到的消費者。

And I am thrilled to say that the industry heard me.

而我非常高興能夠告訴各位， 這個產業聽到了我的聲音。

Runway of Dreams collaborated with the most amazing,

「夢想的伸展台」的合作夥伴

forward-thinking brand on our planet --

是地球上最了不起、 最有前瞻性思維的品牌。

(Applause)

（掌聲）

who took my vision to market

他們把我的遠景帶到市場上，

and made fashion history

寫下了時尚的歷史新頁，

by launching the first mainstream adaptive collection.

推出了第一個主流無障礙系列。

And the rest is yet to come.

還有其他的在後頭呢。

(Applause)

（掌聲）

So --

所以，

(Applause)

（掌聲）

Fashion holds the key to a vital lifeline.

時尚掌握著維生的生命線。

Clothing can be transformative.

衣服是有改造作用的。

Clothing equals confidence.

衣服等同信心。

So tomorrow,

所以，明天，

when you are starting your day

當你開始你的一天，

and you're thinking about what you're going to wear,

你在想著你要穿什麼，

I hope you appreciate the process

我希望你能夠珍惜這個過程，

and think about how what you chose

然後想想看，你選擇的穿著

makes you feel.

讓你有什麼樣的感覺。

Today, Oliver is 13.

今天，奧利佛十三歲了。

He wears his adaptive khakis,

他穿著無障礙卡其褲、

his magnetic button-front shirt --

前面有磁鐵釦的上衣－

feels like the coolest kid around.

覺得自己是附近最酷的孩子。

My boy has total swagger.

我的孩子昂首闊步、神氣活現。

(Laughter)

（笑聲）

As I mentioned,

如我先前提到的，

Oliver's disease is degenerative,

奧利佛的疾病是退化性的，

which means his muscles are going to break down over time.

也就是說，他的肌肉 會隨著時間越來越糟。

This, by far, is the most devastating part for me.

目前，這是最讓我悲痛的部分。

I have to sit on the sidelines

我得要旁觀，

and watch my boy deteriorate.

看著我的孩子狀況惡化。

And there's nothing I can do about it.

我什麼也做不了。

So I am looking up from the things that I cannot control

所以，我抬起頭向前看， 把焦點從我無法控制的事情上移開，

to the things that I can,

看向我能控制的事情上，

because I have no option.

因為我沒有選擇。

And so, I am looking up.

所以，我向前看。

And I'm asking the fashion industry to look up.

我也請求時尚業一起向前看。

And now, I'm asking all of you

現在，我也請在座所有人，

to look up, too.

也一起向前看。

Thank you.

謝謝。

(Applause)

（掌聲）