Translator: Theresa Ranft Reviewer: Tanya Cushman
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!