disability is not a four-letter word

Why does language matter?

Why does choice of words matter so much?
Why does the word “disability” hold so much weight?

It’s attached to pride and identity.
It’s attached to services and dollars.
It’s attached to stigma, discomfort, and pity.

It’s also just a word.
Let’s demystify it.
Let’s unpack it.

People relate to “disability” in many different ways.
Some people consider it inseparable from identity.
Some people consider it wholly separate from identity.

We have no interest in telling people how to identify.
Every individual gets to choose.

But we do believe that disability is not a four-letter word.

It’s not bad.
It’s not offensive.
It’s not something that anyone should be afraid to name or claim.

People with disabilities are not necessarily in need of curing or transformation.
The way they are perceived, treated, and excluded in our society is very much in need of curing and transformation.
Art is a vehicle to expansive dialogue and growth.

We want to advance the conversation through art.

Let’s open up the word “disability.”
Let’s invite curiosity.
Let’s cultivate familiarity.
Let’s spark possibility.

disability is not a four-letter word.
p.s. it’s a ten-letter word.

In May 2014, Upstream Arts launched the disability is not a four-letter word campaign to generate artistic reflection and public conversation about stigma associated with disability. As a hybrid organization working at the intersection of the arts, disability, and learning, we have observed that many people still feel uncomfortable with this word, “disability.” In response, we want to crack open the language. We want to explore, unpack, and advance what disability might mean to the widest range of people—from individuals living with disabilities to those who feel they have no connection to disability.

Over the past few years, we have been having this conversation in our multidisciplinary arts programs, at our community events, on our blog, in our newsletters, and via social media (@UpstreamArts, #movingupstream). We are exploring the nuances of identity, language, and expression, using an artistic lens to reflect on and create new perceptions of disability in the arts and in our communities.

We want to make this conversation an everyday conversation. We believe disability is relevant to everyone, whether or not one identifies as being part of the disability community. We are having this conversation through art, because art is a vehicle to expansive dialogue and growth; and we believe art is relevant to everyone, whether or not one identifies as being part of the arts community.

We invite YOU to join us in the work—and the play!—of exploring, unpacking, and demystifying this potent word, “disability.” Come be in dialogue with us at our programs and events. Subscribe to our e-newsletter. Email us back or call us with your thoughts and ideas. Interact with us on our blog, Facebook, and Twitter (@Upstream Arts #movingupstream). Make and share your own creative responses in the medium of your choosing. Join us in advancing the conversation through art.

disability is not a four letter word.
p.s. it’s a ten letter word.

Building the Conversation

This is a growing list of articles, videos, and other resources that we think contribute constructively to this conversation. We’ll update this list regularly, so check back often! If you have suggestions for additions, please email [email protected].

Please note, these links, authors, and publications are not affiliated with Upstream Arts.

“25 simple ways we can all be more disability-inclusive,” Nonprofit with Balls, December 2016
“Meet the Deaf Poets Society, a digital journal for writers with disabilities,”
PBS, August 2016
How I worship my body and accept my disability,
Blavity, August 2016
DIStopia podcast featuring Gaelynn Lea, hosted by Christopher Smit of DisArt, May 2016
, hosted by Christopher Smit of DisArt, launched April 2016
“Spotlight on: Diversability” Disability.gov Blog, December 2015
“The Art of Change: A Ford Foundation Project Exploring the Intersection of Art and Justice” Ford Foundation, 2015
“Disability arts: the challenge of ensuring creative momentum,” The Guardian, September 2015
Words I Wheel By
, a blog by writer/advocate Emily Landau
Challenging Notions: Disability + the Arts NEA Arts Magazine, 2015, No. 1
“We Are Lions: Supporting Artists with disABILITIES” Disability.Blog, February 2015
“Laughing at My Nightmare: Strangers Assume My Girlfriend is My Nurse” The Huffington Post, February 2015.
“Disabled People Aren’t Here to Inspire You” The Guardian, February 2015.
“I Know What Causes Autism” The Huffington Post, February 2015.
“‘Presumed Competency’ Gives the Disabled a Chance.” The Times of Israel, January 2015.
“Stella Young’s letter to herself at 80 years old.” The Sydney Morning Herald, November/December 2014.
“Sue Austin: Deep sea diving… in a wheelchair” TED Talk, October 2014.
“The Truth About Down Syndrome.” The New York Times, September 2014.
GIMPLECAPPED: A Journey of “Inspiration” Web Series by Sore Thumb Group, August 2014.
“Disability is Not Just a Metaphor.” The Atlantic, July 2014.
“Doing Social Justice: 10 Reasons to Give Up Ableist Language.” Huffington Post, June 2014.
“End the Awkward: the story so far.” Scope, June 2014.
“Presuming I Would Be Offended is the Most Offensive Thing of All.” Huffington Post, May 2014.
“A Point of View: Happiness and Disability.”
 BBC News Magazine, May 2014.
“‘You Lucky Dogs’: A Dad Reimagines a Down Syndrome Diagnosis.” The Mighty, May 2014.
“Stella Young: I’m not your inspiration, thank you very much.” TED Talk, April 2014.
“Why Are Glasses Perceived Differently Than Hearing Aids?” The Atlantic, December 2013.
Disability and Representation – Rachel Cohen-Rottenberg’s blog