07:10
TEDxRiodelaPlata

Carina Morillo: To understand autism, don't look away

カリーナ・モリージョ: 自閉症を理解したいなら、目をそらさないで

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カリーナ・モリージョは、息子のイバンが自閉症と診断されたとき、自閉症のことはほとんど知りませんでした。分かっていたことは、イバンは言葉を話したり言葉に反応したりしないこと、そしてイバンとつながるには言葉以外の方法を見つけなければならないことでした。カリーナは、息子とともに好奇心を持つことで、どうやって息子がたくましく生きていく手助けができるようになったのか語ります。

- Autism advocate
Carina Morillo is an advocate for the social inclusion of people with autism. Full bio

"Look at me!"
「私を見て!」
00:13
That phrase turned me
into an eye-contact coach.
この言葉で 私は
アイコンタクトのコーチになりました
00:16
I'm the mother of Ivan; he's 15 years old.
私は 15歳になるイバンの母親です
00:22
Ivan has autism,
イバンは自閉症で
00:26
he doesn't speak,
話すことができず
00:28
and he communicates through an iPad,
iPadを通じて会話します
00:30
where his whole universe of words
exists in images.
そこには 画像という形で
彼の言葉の世界が広がっているのです
00:32
He was diagnosed
when he was two and a half.
イバンは2歳半のときに
自閉症と診断されました
00:37
I still remember that day painfully.
その日のことは今でも
痛々しく思い出されます
00:43
My husband and I felt really lost;
夫と私は途方に暮れ
00:49
we didn't know where to begin.
どこから手をつけたら良いか
分かりませんでした
00:53
There was no internet,
当時はインターネットもなく
00:56
you couldn't Google information,
情報を検索するということも
できませんでした
00:59
so we made those first steps
ですから私たちは まったくの直感で
01:02
out of sheer intuition.
最初の一歩を踏み出したのです
01:05
Ivan would not maintain eye contact,
イバンはアイコンタクトをしなくなり
01:09
he had lost the words that he did know,
一旦覚えた言葉も失い
01:13
and he didn't respond to his name
or to anything we asked him,
名前を呼ばれても 何かを尋ねても
反応しませんでした
01:16
as if words were noise.
まるで言葉が雑音に
なったかのようでした
01:21
The only way I could know
彼に何が起こっているのか
01:25
what was going on with him,
彼がどう感じているのか
01:30
what he felt,
それを知る唯一の手段が
01:32
was looking him in the eye.
目を合わせることだったのに―
01:34
But that bridge was broken.
その懸け橋が壊れてしまったのです
01:37
How could I teach him about life?
どうやって生きる術を
教えろというのでしょう?
01:42
When I did things he liked,
he would look at me,
私がイバンの好きなことをすると
彼は私を見てくれ
01:47
and we were connected.
私たちは つながりました
01:51
So I dedicated myself
to working with him on those things,
ですから 全力をあげて
イバンが好きなことに一緒に取り組み
01:53
so we would have more and more
eye-contact moments.
アイコンタクトの時間を
増やそうとしました
01:57
We would spend hours and hours playing tag
with his older sister, Alexia,
イバンの姉のアレクシアと
何時間も鬼ごっこをしたものです
02:03
and when we said: "I caught you!"
「つかまえた!」と言うと
02:10
he would look around for us,
イバンは 振り返って
私たちを見ます
02:14
and at that moment,
I could feel he was alive.
その瞬間 私は
彼が生きていると感じられました
02:16
We also hold a record for hours spent
in a swimming pool.
私たちがプールで過ごした時間も
記録的な長さです
02:25
Ivan always had a passion for water.
イバンは 昔から水が大好きでした
02:31
I remember when he was two and a half,
忘れもしない
彼が2歳半のときのことです
02:35
on a rainy winter day,
雨降りの冬の日
02:39
I was taking him to an indoor pool,
私は イバンを屋内プールに
連れて行くところでした
02:43
because even on rainy days
we'd go swimming.
雨の日でも
泳ぎに行っていたのです
02:45
We were on the highway,
and I took the wrong exit.
高速道路で 私は出口を
間違えてしまいました
02:49
He burst into tears and cried
inconsolably, nonstop,
するとイバンは突然泣き出し
なだめようもなく 泣き続けました
02:54
until I turned back.
私が引き返して ようやく
02:58
Only then did he calm down.
落ち着きました
03:00
How was it possible
that a two and a half year old
自分の名前にすら反応しない
2歳半の子に
03:03
didn't respond to his own name,
雨と霧のなか
03:07
yet in the middle of the rain and fog,
where I couldn't see anything,
一体どうして
正しい道が分かったのでしょうか?
03:09
he knew the exact route?
私には何も見えなかったのにです
03:13
That's when I realized that Ivan
had an exceptional visual memory,
そのとき私は
イバンの類まれな視覚的記憶に気づき
03:21
and that that would be my way in.
これこそ私の進むべき道だ
と思ったのです
03:25
So I started taking
pictures of everything,
私は あらゆるものを写真に撮り
03:29
and teaching him what life was like,
人生がどんなものか教えるのに
03:32
showing it to him, picture by picture.
写真を1枚1枚見せ始めました
03:35
Even now, it's the way Ivan communicates
今でも イバンは
そうやって会話します
03:39
what he wants,
何がほしいのか
03:44
what he needs
何が必要なのか
03:46
and also what he feels.
どういう気持ちか伝えます
03:48
But it wasn't just
Ivan's eye contact that mattered.
でも イバンがアイコンタクトすれば
それで良いわけではありません
03:54
Everyone else's did, too.
他のみんなからのアイコンタクトも必要です
03:58
How could I make people see
not only his autism,
どうしたら みんなに
イバンの自閉症だけではなく
04:02
but see him the person
彼の人となりが見てもらえるか
04:06
and everything he can give;
彼が与えられること
04:09
everything he can do;
彼ができること
04:12
the things he likes and doesn't like,
彼が好きなこと嫌いなことを
私たちの場合と同じように
04:15
just like any one of us?
見てもらえるか考えました
04:18
But for that, I also had
to give of myself.
そのためには自己犠牲も必要でした
04:21
I had to have the strength to let him go,
彼に任せる強さを
持たねばならなかったのです
04:25
which was extremely difficult.
とても辛いことでした
04:28
Ivan was 11 years old,
イバンは11歳のとき
04:33
and he went for treatment
in a neighborhood near our house.
家の近所へ治療に通っていました
04:35
One afternoon,
while I was waiting for him,
ある日の午後
私は彼を待つ間に
04:40
I went into a greengrocer,
八百屋さんに入りました
04:44
a typical neighborhood store
with a little bit of everything.
何でもちょっとずつ売っている
よくある地元のお店です
04:46
While doing the shopping,
買い物をしながら
04:50
I started talking to Jose, the owner.
店主のホセとおしゃべりを始めました
04:52
I told him about Ivan,
イバンのことを話しました
04:56
that he had autism,
イバンが自閉症であること
04:59
and that I wanted him to learn
to walk down the street by himself,
イバンには 誰かの手を借りなくとも
ひとりで街を歩けるようになってほしいこと
05:01
without anyone holding his hand.
そんな思いを伝えました
05:05
So I decided to ask Jose
if Thursdays around 2pm,
そのとき ホセに頼んでみようと決めたのです
毎週木曜日の2時ごろに―
05:08
Ivan could come and help him arrange
the water bottles on the shelves,
イバンが店に来て
棚に水のボトルを並べるのを手伝っても良いかと
05:13
because he loved to organize things.
イバンは 物を整理するのが
大好きなのです
05:17
And as a reward, he could buy
some chocolate cookies,
そのご褒美に
イバンは大好物のチョコクッキーを
05:19
which were his favorite.
買って帰ります
05:23
He said "yes" right away.
ホセは快諾してくれました
05:27
So that's how it went for a year:
そういうわけで1年の間
05:30
Ivan would go to Jose's greengrocer,
イバンはホセのお店に行き
05:34
help him arrange the shelves
of water bottles
水のボトルを並べる手伝いをしました
05:37
with the labels perfectly
lined up on the same side,
ラベルが完ぺきに同じ方向を
向くように並べるのです
05:40
and he would leave happy
with his chocolate cookies.
そして チョコクッキーを手に
喜んで帰るのでした
05:46
Jose is not an expert in autism.
ホセは自閉症の専門家ではありません
05:56
There is no need to be an expert
誰かを迎え入れるのに
06:01
nor do anything heroic to include someone.
専門家であることも
英雄的なことをする必要もありません
06:05
We just need to be there --
ただ そこにいれば良いんです
06:12
(Applause)
(拍手)
06:14
(Applause ends)
(拍手がやむ)
06:22
Really, no heroic deed --
英雄的な行為は要らない―
06:25
we simply need to be close.
ただ そばにいるだけで良いのです
06:28
And if we are afraid of something
もし心配なことがあったり
06:33
or we don't understand something,
分からないことがあれば
06:36
we need to ask.
聞けばいいんです
06:38
Let's be curious
好奇心を持ってください
06:41
but never indifferent.
無関心はいけません
06:44
Let's have the courage
to look each other in the eye,
互いの目を見て向き合う
勇気を持ってください
06:50
because by looking,
見ることで
06:56
we can open a whole world to someone else.
誰かにつながる新しい世界を
切り開くことができるのです
06:58
(Applause)
(拍手)
07:03
(Cheers)
(歓声)
07:05
Translated by Yuko Yoshida
Reviewed by Hiroko Kawano

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About the Speaker:

Carina Morillo - Autism advocate
Carina Morillo is an advocate for the social inclusion of people with autism.

Why you should listen

Carina Morillo is a founding member and president of Fundación Brincar, a non-profit organization in Argentina that has worked since 2010 for a better quality of life of people with autism and their families.

Morillo started Fundación Brincar -- inspired by her son Ivan, who is currently 16 years old and has autism -- because she strongly believes that although life with autism can be challenging, her family and others like it have the right to be happy. In spite of its high prevalence, most people still don't know what autism is about or how to help someone with autism. The foundation offers support services and training to families and professionals, community awareness programs and art and skills training for children, youth and adults on the autism spectrum. Brincar has trained more than 15,000 professionals and families, and it currently offers support services to more than 3,000 families throughout Argentina. The foundation's free virtual library monthly reaches 400,000 people per month throughout Latin America and Spain. Brincar is also founding member of the Argentina Network of Autism, and has become one of the leading autism references for both families, health professionals and teachers in Argentina and Latin America.

Morillo is actively working on the creation of an adult life platform for living with autism. Like many parents, her main concern is who will take care of her son during his adult life. Around one-third of people with autism remain nonverbal, and one-third have an intellectual disability, requiring 24/7 support throughout their life. Existing facilities and services in Argentina and Latin America are limited to school age, with no residence or occupation solutions for anyone older than 18.

Morillo has been awarded the 2016 US Ambassador in Argentina Entrepreneur Prize and the 2014 Argentine Solidarity Prize. In April 2017, Fundación Brincar was declared of Social Interest by the Congress of the City of Buenos Aires for its open community services. Morillo holds a BS in Business Administration degree of Babson College.

More profile about the speaker
Carina Morillo | Speaker | TED.com