The art of seeing: how to look at disability | Margaret Keller | TEDxBerkshires

Being told "Don’t stare!" might be the first memory some of us have of encountering a person with a disability. And in fact, when it comes to disability, our culture has collectively tended to avert its gaze. How do we, as individuals and as a culture, turn around a history where the polite thing was not to look? How do we learn to see the richness and complexity of an individual: a person who prefers cats or maybe dogs, who likes or doesn’t like chocolate, who is so unique as to defy categorization. How do we look, really look, at disability?

Margaret Keller is executive director of Community Access to the Arts (CATA), a nonprofit organization that nurtures and celebrates the creativity of 600 people with disabilities across Berkshire County. After completing her doctoral coursework at the University of Chicago, she was lured away from the ivory tower by the nonprofit world, where she discovered her passion for bringing the arts and humanities to wider audiences. As associate director of the Chicago Humanities Festival, Margaret led program development for an annual city-wide celebration of art and ideas, working with major thinkers, artists, and cultural organizations.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

A memory from my childhood
in the 1970s:

being at the grocery store
with my older sister

and seeing someone in a wheelchair,
whose head was bent to the side.

Now, as a kid, I tended
to sort people into categories:

adult or child, boy or girl.

And this was someone
I had trouble sorting.

I couldn't tell how old they were,

I couldn't tell
if they were looking at me,

I couldn't really tell if they could see.

And I remember tugging on
my sister's sleeve to ask her a question

and her nudging me with her elbow
and whispering, "Don't stare!"

"Don't stare."

To the extent that I thought
about disability as a child,

the message I took away was "Don't look."

And in the 1970s,

"look away" might have been
the dominant ethos of our culture

when it came to disability.

This was an era before the passage
of historic legislation,

ADA, the Americans with Disabilities Act,

before integrated classrooms
and the rise of mainstreaming,

a period when it wasn't uncommon
for people with developmental disabilities

to be sent to live
away from their families

in institutional settings.

Our culture at this point

worked pretty hard
to make disability invisible.

One exception
was the Jerry Lewis Telethon.

And you probably remember Jerry's kids.

The telethon explicitly asked us to look.

In 1976, the Muscular Dystrophy
Association Telethon

was broadcast on 213 stations
for 21.5 hours,

with musical skits and performances

punctuated by Lewis' impassioned pleas
on behalf of his kids -

often not kids at all,
but adults with disabilities

who were relegated
to the land of eternal childhood.

If we're considering the place
of disability in American culture

during my formative years,

we might say we have a bit of a paradox

centered on how to look.

On the one hand, our culture
is telling us, "Don't look!"

Disability is cast as an illness

that we, the television viewers,
the onlookers, are meant to cure.

Fast-forward till now, 30-odd years later.

So much has changed.

We've seen athletes with disabilities
compete in the Paralympics,

the Olympics, the Special Olympics.

The disability rights movement
has made enormous strides.

There's a growing number of actors
with disabilities on stage and screen.

Our children go to integrated schools.

Integration is widely accepted,

if not as the norm then as a desired goal.

But if we're being honest with ourselves,

we have to acknowledge
that we still have a long way to go,

particularly when it comes
to developmental disabilities, perhaps.

We still live in a culture where people
use the R-word as a casual epithet,

where there's an online movement

dedicated to helping us
spread the word to end the word.

For many of us, if we're being honest,

there's still a degree
of discomfort about disability.

Maybe we're not sure
how to read someone with a disability.

Maybe we're not sure what to say,

and we're afraid
we'll say the wrong thing.

Maybe we're not sure how to communicate
with someone who might be nonverbal,

or whose speech might be different,

or who we perceive
in some way as different.

To a large extent,

we've inherited this paradox
of how to look at disability.

So how do we find our way out of this box?

How do we create new ways of seeing,

ways that allow us to break out
of the culture of invisibility,

ways that allow us
to see the whole person

not as an object of sympathy or a child

but as a multi-faceted human being?

Implicit in this question

is an acknowledgment
of the limits of sympathy.

Sympathy has a kind of built-in disparity.

It presupposes an unequal equation,

where one person empowered,
seemingly whole,

bestows something on another
less empowered, less whole.

Sympathy may have its place,

but it's no basis
for a long-term relationship.

It's a one-way arrow,
not a two-way street.

How do we move beyond
the limits of sympathy?

How do we see differently?

Here's one powerful answer:

art.

I want to ask you right now

to think about a powerful experience
that you've had in the arts,

a moment where something moved you -

a painting, a play,
a piece of music, a work of dance.

I want you to try to remember that moment,

to hold it in your mind
and unpack what was happening inside you.

So a recent moment for me,
just a couple of weeks ago, in fact,

was a trip to the new Whitney Museum

in New York.

I was walking through the galleries

and stumbled upon "The Seasons" -

a painting by Lee Krasner

made after the death
of her husband, Jackson Pollock.

It's a massive work
covering a really large wall,

full of sweeping brushstrokes

with bright pinky reds
and deep vegetal greens.

You can just imagine the artist's arms
reaching high and wide

to circle the canvas
and create these round, ripe shapes.

After Pollock's death, Krasner wondered
whether she'd ever paint again,

and this painting was her answer.

I found myself transfixed.

I don't know if you've had that experience

where you're walking through a museum,

you're pondering, nodding,
making your museum face,

and then something
out of the blue just floors you.

That was my experience.

The painting just stopped me in my tracks.

I wanted to linger, to take it in,

to have a few moments to commune with it

and respond to what it was offering.

So, in a way, the painting
provoked a kind of revelation.

There are two senses
to that word "revelation,"

and I mean them both here:

the sense that something
is being revealed to us

and also that in that revealing,

something is awakened within us.

We're alive and we're energized
in that awakening.

So how does all of this
relate to disability and seeing?

Five years ago,

I had my first experience
as an audience member

at a performance showcasing
artists with disabilities.

The dancers, actors, jugglers,
singers I saw on stage

all had developmental disabilities.

I remember watching a group of dancers
in Dawn Lane's Moving Company

in a piece called "Resilience."

It was an elegant, moving performance

where the dancers

creatively riffed on the idea
of children playing on a playground.

The overall theme of the show
was "Sticks and Stones."

And in their movements,
the dancers acted out playground taunts.

At the end of the piece,

a dancer with Down syndrome
began swinging on a simple wooden swing

that had been installed
as part of the set.

Her movements were graceful,

and they were beautiful.

But there was also something
almost defiant

in the way that she soared overhead.

It was like watching a dare,

and it was riveting.

I sat in the audience, suddenly joyful.

And I wasn't the only one.

I could see and feel others
right there with me.

It was a little like
a floodgate had burst.

There was almost
a sense of relief in the air.

The show was funny, and it was moving,

and it was clever,

but why was it so profoundly joyous?

What was this wave that we,
the audience, were all riding?

Before that night, I hadn't thought
that much about disability.

And although I'd spent my career
in the nonprofit arts and humanities,

I hadn't thought that much

about the relationship
between art and disability.

All I knew, sitting there,

was that I wanted to bring
my children back the next day

so they could have this experience.

I knew somehow that this single event,

this night that I had watched,

encapsulated so much of what
I wanted to teach them about life,

the deep and important stuff
that we don't always know how to convey

but that we want so much
to pass on to our kids,

about following our passions

and bearing witness
to what's deep inside us,

about humanity even,

what connects us, what binds us together.

And I realized that what I was watching
perfectly captured the power of the arts.

Not because the performers
were all experts or professional artists.

They weren't.

They were learning,

carrying us along with them.

But still the experience of watching them

revealed for me, reminded me

what art at its core does for us.

Art brings us out of ourselves.

When we're moved or engaged
or even provoked

by a novel or a play or a painting

or a work of dance or music,

we are led into an encounter
with another perspective.

So art, in this sense,
is always about a kind of epiphany.

It's a moment of revelation

that opens up a new landscape
and a new set of ideas.

Art that's connected to disability, then,

can be explosively powerful

for those of us whose lives
have been spent outside that world.

It suddenly gives us
a point of connection,

access to a whole new way of seeing.

And this experience can break through
the paradox of looking

that I was describing earlier.

Many of us in the audience that night

had inherited the legacy
of one-way seeing,

whether we knew it or not.

Watching art created by people
with developmental disabilities

shattered this history.

The joy that I could feel in the audience
was a kind of release,

like the sound of a glass cage breaking.

Watching the performance,

we saw the talents
and the abilities of the performers.

We had a glimpse of their perspective.

We swung on the swing
with the dancer with Down syndrome

and felt the breeze in our face.

The arrow was now two ways.

Someone was looking back.

My experience in the theater that night

led me a few years later to my new career

as executive director
of the same organization,

Community Access to the Arts,

a nonprofit that nurtures and celebrates
the creativity of people with disabilities

through the arts, visual and performing.

Founded 23 years ago
by dance therapist Sandy Newman,

CATA has been at the cutting edge
of a growing movement

in what is sometimes called
"disability art."

I'm still new to this field

and new, too, to the ways
of seeing that I've described.

But you don't have to be propelled
into a career change

to have an experience like that

change you.

Art pushes us to move
beyond charity, beyond sympathy

to something bigger,

something reciprocal.

As an audience member,
you and the performers you watch

are mutually enlarged
by your participation in that moment.

And this works just as well
in the visual arts.

These are self-portraits
from a CATA workshop

led by faculty artist Janice Shields.

They reflect many different
ability levels,

from mark-making to a talent
for mixing watercolor

to detailed portraiture.

But they all capture what happens
when we look through art.

On one half of the page,
we see a photograph of a CATA artist.

On the other, we see
that artist's self-portrait.

I love that we literally need
the artist's perspective

to create a complete image,

a whole face.

And that completed image
challenges us as viewers

to synthesize these two parts:

what we see initially

and what the artist
offers us of him or herself.

We are asked by these works

to stitch together
the physical exterior of the artist

with the imagination that lies within.

The artists present us here with a gift,

an opportunity to see in a way

that is authentic, whole,
and grounded in connection.

This new way of seeing
lets us see ourselves in a new light too.

For if the old dynamic
of an "us" and a "them"

was based on a limited sense of "them,"

it was also based
on a limited sense of "us."

When we let the power of art move us,

we make space for revelation, for wonder.

And the force of that revelation can upend

even the most deeply held prejudices,

even those we didn't know we harbored.

We discard our old lenses

and see with fresh eyes.

We see that we are all "us."

These works of art were made by artists
with disabilities in our community.

Go and stare!