ABOUT THE SPEAKER
Tony Luciani - Artist
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery.

Why you should listen

Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, and it was the imaginative expression of the collaboration that propelled his work internationally. After more than 40 years as a full-time painter, Luciani garnered worldwide attention with this four-year-long photography series. Their voyage of discovery, expressing the benefits of inclusion and participation within a creative medium, has gone beyond the boundaries of recognizing it as just a personal visual diary.

Luciani graduated from Toronto's Ontario College of Art in 1977 with prestigious honors. At age 21, he was encouraged to continue with his fifth-year post-graduate study in Florence, Italy. It was there that he found maturity while carefully observing the historical paintings of the Renaissance Masters. Upon returning, he was promptly accepted for representation by a well-respected and established Canadian art gallery.

In defining his work, Luciani prefers to be placed in a tradition of realism, which is both interpretive and characterized by focused observation. As a photographer, he likes defining his imagery as an "obvious extension" to what he already creates as an artist.

Luciani's art can be found in private, public and corporate collections globally. An unabridged edition of one-hundred photographs titled "MAMMA, In the Meantime" is in the collection of the local chapter of the Canadian Alzheimer Society. He is represented by Loch Gallery in Toronto, Winnipeg and Calgary.

More profile about the speaker
Tony Luciani | Speaker | TED.com
TEDxCambridge

Tony Luciani: A mother and son's photographic journey through dementia

Tony Luciani: Uma viagem fotográfica de uma mãe e um filho pela demência

Filmed:
531,090 views

O artista Tony Luciani estava testando uma nova câmera quando a mãe de 91 anos, Elia, entrou furtivamente nas fotos dele. As imagens espontâneas resultantes provocaram uma colaboração de anos, em que Luciani documentou a vida e o espírito da mãe enquanto ela vivia com demência. Nesta palestra comovente, ele compartilha as histórias por trás de algumas das fotos favoritas deles, captando a alegria e a tristeza de tratar de uma mãe idosa.
- Artist
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery. Full bio

Double-click the English transcript below to play the video.

00:13
When my 91-year-old mother, Elia,
moved in with me,
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Quando minha mãe, Elia, de 91 anos,
veio morar comigo,
00:17
I thought I was doing her a service.
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achei que eu a estava ajudando.
00:20
In fact, it was the other way around.
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Na verdade, foi o contrário.
00:23
You see, Mom was having issues
with memory loss and accepting her age.
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Minha mãe estava tendo problemas
de perda de memória
e de aceitação da idade.
00:29
She looked defeated.
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Ela parecia derrotada.
00:31
I tried to make her
as comfortable as possible,
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Tentei lhe dar o maior conforto possível,
mas, quando eu estava pintando,
em frente a meu cavalete,
00:35
but when I was at my easel, painting,
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00:37
I would peek over
and see her just ... there.
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eu dava uma rápida olhada
e a via ali parada.
00:41
She'd be staring at nothing in particular.
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Ela não olhava para nada em especial.
00:45
I'd watch her slowly climb the stairs,
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Eu a via subir a escada, lentamente.
00:49
and she wasn't the mom I grew up with.
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Ela já não era a mãe que havia me criado.
00:52
I saw, instead, a frail,
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Em vez disso, eu via
uma mulher idosa, pequena e frágil.
00:55
tiny, old woman.
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01:01
A few weeks went by,
and I needed a break from my painting.
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Passaram-se algumas semanas,
e precisei de uma folga de minha pintura.
01:04
I wanted to play with the new camera
I had just bought.
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Eu queria brincar com a nova câmera
que havia comprado.
01:07
I was excited --
it had all sorts of dials,
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Eu estava animado.
Ela possuía todo tipo de mostradores,
01:10
buttons and settings I wanted to learn,
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botões e definições
que eu queria aprender.
01:13
so I set up my tripod
facing this large mirror,
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Instalei o tripé em frente
a um grande espelho,
01:18
blocking the doorway
to the only bathroom in the house.
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que bloqueava a entrada
do único banheiro da casa.
01:23
(Laughter)
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01:25
After a while, I hear,
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Depois de um tempo, ouço:
01:29
(Imitating Italian accent)
"I need to use the washroom."
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(Sotaque italiano)
"Preciso usar o banheiro".
(Risos)
01:31
(Laughter)
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"Cinco minutos, mãe; preciso fazer isso."
01:32
"Five minutes, Mom. I need to do this."
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01:36
15 minutes later, and I hear, again,
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Quinze minutos depois, ouço novamente:
01:42
"I need to use the washroom."
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"Preciso usar o banheiro".
01:45
"Five more minutes."
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"Só mais cinco minutos."
01:47
Then this happened.
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Então, aconteceu isto.
01:53
(Laughter)
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(Risos)
01:57
(Applause)
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(Aplausos)
02:05
And this.
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E isto.
02:09
(Laughter)
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(Risos)
02:14
And then, this.
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E depois, isto.
02:19
(Laughter)
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(Risos)
02:25
I had my "aha!" moment.
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Tive meu momento eureca.
02:29
We connected.
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Entramos em sintonia.
02:30
We had something tangible
we could do together.
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Tínhamos algo tangível
que podíamos fazer juntos.
02:36
My mom was born in a small
mountain village in central Italy,
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Minha mãe nasceu em uma pequena
aldeia de montanha no centro de Itália,
02:41
where her parents had land and sheep.
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onde os pais dela tinham terras e ovelhas.
02:44
At a young age,
her father died of pneumonia,
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Muito novo, o pai dela
morreu de pneumonia,
02:47
leaving his wife and two daughters alone
with all the heavy chores.
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deixando sós a mulher e duas filhas
com todos os trabalhos pesados.
02:53
They found that they couldn't cope.
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Elas achavam que não conseguiriam.
02:56
So a very hard decision was made.
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Por isso, tomaram uma decisão difícil.
02:59
Mom, the oldest, at 13,
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Minha mãe, a mais velha, com 13 anos,
03:02
was married off to a complete
stranger twice her age.
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casou-se com um estranho
com o dobro da idade dela.
03:08
She went from being just a kid
and was pushed into adulthood.
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Passou de criança para a fase adulta.
03:14
Mom had her first child
when she was only 16.
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Minha mãe teve o primeiro filho
quando tinha apenas 16 anos.
03:20
Years later, and now living in Toronto,
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Anos mais tarde, já morando em Toronto,
03:23
Mom got work in a clothing factory
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minha mãe foi trabalhar
em uma fábrica de roupas
03:26
and soon became manager
of a very large sewing department.
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e logo se tornou gerente
de um grande departamento de costura.
03:31
And because it was full
of immigrant workers,
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Como estava cheia
de trabalhadoras imigrantes,
03:34
Mom taught herself words
from translation books.
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minha mãe aprendeu sozinha
palavras de livros de tradução.
03:38
She then practiced them in French,
Greek, Spanish, Portuguese, Danish,
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Depois, praticava com elas
em francês, grego, espanhol,
português, dinamarquês,
polonês, russo, romeno,
03:42
Polish, Russian, Romanian, Hungarian,
all around the house.
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húngaro, pela casa toda.
03:47
I was in awe of her focus
and determination to succeed
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Eu admirava a concentração
e a determinação dela
para ter êxito em tudo
o que ela gostava de fazer.
03:53
at whatever she loved to do.
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03:56
After that bathroom "aha!" moment,
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Depois daquele momento eureca,
03:59
I practiced my newfound camera skills
with Mom as portrait model.
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eu praticava minhas novas
habilidades fotográficas,
e minha mãe foi meu modelo.
04:05
Through all of this,
she talked, and I listened.
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Durante todo esse tempo,
ela falava e eu escutava.
04:08
She'd tell me about her early childhood
and how she was feeling now.
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Ela me falava da infância dela
e de como se sentia agora.
04:13
We had each other's attention.
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Prestávamos atenção um ao outro.
Minha mãe estava perdendo
a memória de curto prazo,
04:17
Mom was losing her short-term memory,
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04:19
but was better recalling
her younger years.
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mas podia recordar melhor
os anos de juventude dela.
04:23
I'd ask, and she would tell me stories.
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Eu fazia perguntas,
e ela me contava histórias.
04:25
I listened, and I was her audience.
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Eu escutava.
Eu era o público dela.
04:29
I got ideas.
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Eu tinha ideias,
04:31
I wrote them down,
and I sketched them out.
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que anotava e desenhava.
04:34
I showed her what to do
by acting out the scenarios myself.
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Mostrava a ela o que fazer
e eu mesmo representava as situações.
04:40
We would then stage them.
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Depois as encenava.
04:42
So she posed, and I learned
more about photography.
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Ela posava, e eu aprendia mais
sobre fotografia.
04:48
Mom loved the process, the acting.
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Minha mãe adorava o processo,
a representação.
04:53
She felt worthy again,
she felt wanted and needed.
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Ela se sentia valorizada, querida
e necessária novamente.
04:58
And she certainly wasn't camera-shy.
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Claro que ela não era tímida
em frente às câmeras.
05:00
(Laughter)
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(Risos)
05:04
(Applause)
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(Aplausos)
05:12
Mom laughed hysterically at this one.
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Minha mãe riu histericamente com esta.
05:16
(Laughter)
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(Risos)
05:19
The idea for this image
came from an old German film I'd seen,
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A ideia dessa foto surgiu de um antigo
filme alemão que eu tinha visto
05:23
about a submarine, called "Das Boot."
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sobre um submarino, chamado "Das Boot".
05:26
As you can see, what I got instead
looked more like "E.T."
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Como podem ver, o que consegui
era mais parecido com o "E.T.".
05:30
(Laughter)
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(Risos)
05:32
So I put this image aside,
thinking it was a total failure,
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Deixei essa foto de lado,
pensando que era um fracasso total,
05:35
because it didn't reach
my particular vision.
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porque não correspondia
com minha visão particular.
05:38
But Mom laughed so hard,
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Mas minha mãe ria tanto
05:41
I eventually, for fun,
decided to post it online anyway.
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que, por fim, por brincadeira,
decidi publicá-la on-line.
05:47
It got an incredible amount of attention.
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A foto recebeu uma atenção incrível.
05:51
Now, with any Alzheimer's, dementia,
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Com Alzheimer, demência,
05:56
there's a certain amount
of frustration and sadness
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há uma certa frustração e tristeza
05:59
for everyone involved.
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para todos os envolvidos.
06:02
This is Mom's silent scream.
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Esse é o grito silencioso de minha mãe.
06:06
Her words to me one day were,
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As palavras dela, um dia, foram:
06:08
"Why is my head so full of things to say,
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"Por que minha cabeça
está tão repleta de coisas para dizer,
06:12
but before they reach my mouth,
I forget what they are?"
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mas, antes de chegarem à boca,
eu me esqueço delas?"
06:20
"Why is my head so full of things to say,
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"Por que minha cabeça
está tão repleta de coisas para dizer,
06:27
but before they reach my mouth,
I forget what they are?"
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mas, antes de chegarem à boca,
eu me esqueço delas?"
06:33
(Applause)
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(Aplausos)
06:44
Now, as full-time care partner
and full-time painter,
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Como cuidador e pintor em tempo integral,
06:49
I had my frustrations too.
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eu também tinha minhas frustrações.
06:53
(Laughter)
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(Risos)
06:55
But to balance off
all the difficulties, we played.
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Mas, para equilibrar as dificuldades,
nós brincávamos.
Este era o lugar onde minha mãe
se sentia feliz.
06:58
That was Mom's happy place.
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07:01
And I needed her to be there, too.
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E eu também precisava que ela ficasse lá.
07:05
(Laughter)
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(Risos)
07:10
(Laughter)
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(Risos)
07:15
(Laughter)
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(Risos)
07:19
Now, Mom was also preoccupied with aging.
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Minha mãe também se preocupava
por estar envelhecendo.
07:22
She would say,
"How did I get so old, so fast?"
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Dizia: "Como envelheci
tanto, tão depressa?"
07:29
(Audience sighs)
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07:41
"So old."
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"Tão velha."
07:48
"So fast."
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"Tão depressa."
07:53
I also got Mom to model
for my oil paintings.
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Também tive minha mãe como modelo
para minhas pinturas a óleo.
07:57
This painting is called "The Dressmaker."
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Esta pintura chama-se "A Costureira".
08:02
I remember, as a kid,
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Lembro-me, quando era criança,
08:05
Mom sewing clothes for the whole family
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de minha mãe fazer roupas
para toda a família
08:07
on this massive, heavy sewing machine
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nessa máquina de costura enorme e pesada,
08:11
that was bolted
to the floor in the basement.
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aparafusada ao chão do porão.
08:15
Many nights, I would go downstairs
and bring my schoolwork with me.
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Muitas noites, eu descia a escada
e levava minha lição de casa comigo.
08:20
I would sit behind her
in this overstuffed chair.
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Eu me sentava atrás dela
em uma cadeira estofada.
08:25
The low hum of the huge motor
and the repetitive stitching sounds
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O zumbido leve do enorme motor
e os sons repetitivos da costura
08:30
were comforting to me.
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eram reconfortantes.
Quando minha mãe mudou-se para minha casa,
08:33
When Mom moved into my house,
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08:35
I saved this machine and stored it
in my studio for safekeeping.
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guardei a máquina e a coloquei
em meu estúdio por segurança.
08:40
This painting brought me
back to my childhood.
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Essa pintura me fez voltar
a minha infância.
08:44
The interesting part
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A parte interessante
08:46
was that it was now Mom,
sitting behind me,
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era que, agora, era minha mãe
que se sentava atrás de mim,
08:51
watching me paint her
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vendo-me pintá-la,
08:53
working on that very same
machine she sewed at
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trabalhando naquela mesma
máquina de costura,
08:57
when I sat behind her, watching her sew,
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quando eu me sentava atrás dela,
vendo-a costurar,
09:01
50 years earlier.
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50 anos atrás.
09:07
I also gave Mom a project to do,
to keep her busy and thinking.
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Também dei a minha mãe um projeto
para mantê-la ocupada e pensativa.
09:11
I provided her with a small camera
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Dei a ela uma pequena câmera
09:14
and asked her to take at least
10 pictures a day of anything she wanted.
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e pedi para ela tirar, pelo menos,
dez fotografias por dia
daquilo que ela quisesse.
09:18
These are Mom's photographs.
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Estas são as fotografias de minha mãe.
09:21
She's never held a camera
in her life before this.
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Ela nunca tinha segurado
uma câmera na vida.
09:25
She was 93.
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Tinha 93 anos.
09:53
We would sit down together
and talk about our work.
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Nós nos sentávamos juntos
e falávamos de nosso trabalho.
09:57
I would try to explain
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Eu tentava explicar
09:58
(Laughter)
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(Risos)
como e por quê eu fazia aquilo,
10:00
how and why I did them,
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10:03
the meaning, the feeling,
why they were relevant.
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o significado, a sensação,
por que era relevante.
10:07
Mom, on the other hand,
would just bluntly say,
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Minha mãe, por outro lado,
dizia simplesmente:
10:10
"sì,"
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"sim",
10:12
"no,"
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"não",
10:13
"bella" or "bruta."
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"bela" ou "bruta".
10:15
(Laughter)
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(Risos)
Eu observava as expressões faciais dela.
10:17
I watched her facial expressions.
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10:21
She always had the last say,
with words or without.
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Ela era sempre a última a falar,
com ou sem palavras.
10:28
This voyage of discovery
hasn't ended with Mom.
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Essa viagem de descoberta
não acabou com minha mãe.
10:33
She is now in an assisted
living residence,
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Ela vive agora
em uma residência assistida,
10:37
a 10-minute walk away from my home.
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a dez minutos a pé de minha casa.
10:41
I visit her every other day.
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Eu a visito dia sim, dia não.
10:45
Her dementia had gotten to the point
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A demência dela chegou ao ponto
em que já não era seguro para ela
ficar em minha casa.
10:47
where it was unsafe for her
to be in my house.
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10:50
It has a lot of stairs.
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Há muitas escadas.
10:54
She doesn't know my name anymore.
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Ela já não sabe mais meu nome.
10:58
(Voice breaking)
But you know what? That's OK.
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(Voz emocionada) Mas sabem
de uma coisa? Está tudo bem.
11:02
She still recognizes my face
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Ela ainda reconhece meu rosto
11:05
and always has a big smile
when she sees me.
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e sempre dá um grande
sorriso quando me vê.
11:10
(Applause)
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(Aplausos)
11:23
(Applause ends)
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11:25
I don't take pictures of her anymore.
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Já não tiro mais fotos dela.
11:28
That wouldn't be fair
or ethical on my part.
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Não seria justo nem ético de minha parte.
11:32
And she wouldn't understand
the reasons for doing them.
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E ela não entenderia a razão disso.
11:36
My father,
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Meu pai,
11:38
my brother,
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meu irmão,
11:40
(Voice breaking) my nephew,
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(Voz emocionada) meu sobrinho,
11:46
my partner and my best friend,
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minha companheira e meu melhor amigo,
11:49
all passed away suddenly.
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todos morreram de repente.
11:51
And I didn't have the chance
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Não tive a chance
11:54
to tell them how much
I appreciated and loved them.
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de dizer a eles o quanto
eu os estimava e amava.
11:58
With Mom, I need to be there
170
706807
3933
Com minha mãe, preciso estar ao lado dela
12:02
and make it a very long goodbye.
171
710764
3658
e fazer disso um longo adeus.
12:09
(Applause)
172
717066
6434
(Aplausos)
12:20
(Applause ends)
173
728811
1150
12:22
For me, it's about being present
and really listening.
174
730684
4099
Para mim, trata-se
de estar presente e escutar.
12:27
Dependents want to feel
a part of something, anything.
175
735382
3167
Os dependentes querem sentir
uma parte de algo, qualquer coisa.
12:30
It doesn't need to be something
exceptionally profound that's shared --
176
738573
3492
Não é preciso ser algo muito profundo
que seja compartilhado.
12:35
it could be as simple as walks together.
177
743041
2261
Pode ser algo tão simples
quanto caminhar juntos.
12:38
Give them a voice
178
746635
2023
Dar-lhes uma voz,
12:41
of interaction, participation,
179
749262
3296
uma interação, uma participação
12:44
and a feeling of belonging.
180
752582
2544
e um sentimento de pertencimento.
12:48
Make the time meaningful.
181
756363
2722
Dar sentido ao tempo.
12:52
Life, it's about wanting to live
182
760688
3429
A vida trata-se de querer viver
12:56
and not waiting to die.
183
764141
2507
e não de esperar morrer.
13:01
(Applause)
184
769787
6964
(Aplausos)
13:11
(Applause ends)
185
779339
1150
13:14
Can I get a wave and a smile
from everyone, please?
186
782776
3865
Podem me dar um aceno
e um sorriso, por favor?
13:18
(Laughter)
187
786665
1499
(Risos)
Esta é para você, mãezinha.
13:20
This is for you, Mom.
188
788188
1400
(Clique da câmera)
13:23
(Camera clicks)
189
791554
1150
13:25
(Applause)
190
793571
5682
(Aplausos)
Translated by Maurício Kakuei Tanaka
Reviewed by Leonardo Silva

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ABOUT THE SPEAKER
Tony Luciani - Artist
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery.

Why you should listen

Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, and it was the imaginative expression of the collaboration that propelled his work internationally. After more than 40 years as a full-time painter, Luciani garnered worldwide attention with this four-year-long photography series. Their voyage of discovery, expressing the benefits of inclusion and participation within a creative medium, has gone beyond the boundaries of recognizing it as just a personal visual diary.

Luciani graduated from Toronto's Ontario College of Art in 1977 with prestigious honors. At age 21, he was encouraged to continue with his fifth-year post-graduate study in Florence, Italy. It was there that he found maturity while carefully observing the historical paintings of the Renaissance Masters. Upon returning, he was promptly accepted for representation by a well-respected and established Canadian art gallery.

In defining his work, Luciani prefers to be placed in a tradition of realism, which is both interpretive and characterized by focused observation. As a photographer, he likes defining his imagery as an "obvious extension" to what he already creates as an artist.

Luciani's art can be found in private, public and corporate collections globally. An unabridged edition of one-hundred photographs titled "MAMMA, In the Meantime" is in the collection of the local chapter of the Canadian Alzheimer Society. He is represented by Loch Gallery in Toronto, Winnipeg and Calgary.

More profile about the speaker
Tony Luciani | Speaker | TED.com

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