by Steven E. Brown
© Institute on Disability Culture, 2016
All Rights Reserved
It hit me a week or so ago. Alice Wong, creator of the Disability Visibility Project published a blog post about the movie "Finding Dory" and included the definition I wrote about disability culture in 1996: 20 years ago!
Where does the time go? (First, I cannot possibly be old enough to have written anything 20 years ago, can I? Why, yes, grandpa, you can—ok enough of that…)
Mainstream Magazine: Magazine of the Able-Disabled published my 1996 article, “We Are Who We Are…So Who Are We?” At that time, when the entire concept of disability culture was steeped in controversy I wrote about who makes definitions:
“The debate about definitions is not a debate primarily about the literal meaning of a word. It's a debate about power. Who has the power to create and apply definitions? In this specific case, who has the power to create and apply definitions of culture? For the most part, the people who have claimed and proclaimed that power have been academicians in the fields of anthropology, psychology, history, sociology, and other so-called social sciences…. In any case, the motivation for claiming expertise is power. The power to name, the power to define, the power to proclaim, the power to place people into a context, an order which fits the vision of the person doing the naming, claiming, and proclaiming….This makes the debate, the controversy over definition a fight over who has the power of naming, claiming, and proclaiming a disability culture. I believe I have this right for myself. I am unwilling to give it to anyone else. I have the power.”
The article concluded with the definition I created and a challenge:
“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.”
You now have the choice to accept, reject, or refine this definition. The power is yours - if you take it.”(Brown, 1996).
About the same time I was writing, the late, great Cheryl Marie Wade wrote and performed Disability Culture Rap which is now available on YouTube. And Carol Gill (the first person I read who discussed Disability Culture) wrote a 1995 article in Disability Studies Quarterly, titled, A Psychological View of Disability Culture (ignore title at link-it’s this article).
In 1996, we were at the beginning stages of understanding the power of the Internet, but we were hardly there. That’s why in the mid-1990s, the Institute on Disability Culture distributed 2 print catalogs called “The Next Renaissance: A catalog of disability art, culture & collectibles,” which included artists (of all kinds) who were producing disability culture. This ranged from the books of Lorenzo Milam to the music of Jeff Moyer to local (in Las Cruces, NM, where we lived at the time), swag such as dragons with disabilities to many other items. The catalog only lasted the 2 issues because by then the Internet was here and there was no longer a need for a print catalog of the type we were doing.
One reason we started the “Next Renaissance” catalog was because in the 1990s the concept of disability culture was controversial. An article about this (one I still use in my courses) was anonymously written for Kids as Self Advocates by Naomi Ortiz with the title, What is Disability Culture? As Naomi wrote in 2005, “Not all people agree that people with disabilities have a culture. However, there are thousands of disability rights groups, books and materials that explain we do.”
Over the years others have created their own definitions. And, of course, there is the now ubiquitous social media to explore anyone’s definitions. Using the search term “disability culture” on Google on June 29, 2016 returned 79,200 hits and on Yahoo, 131,000 returns.
Disability culture is now even found in the halls of academia. As one example, Petra Kuppers published Studying Disability Arts and Culture: An Introduction in 2014. Petra is also the force behind the Olimpias artists collective and performance research series focusing on “art/life, cross-genre participatory practices, arts for social change and disability culture work.”
On Facebook, there are several groups using the theme of Disability Culture, including, but hardly limited to “Disability Community: Pride and Culture,” and “Tangled Art + Disability.”
There are more bloggers than I can count, but one way to access many blogs is to follow Andrew Pulrang’s “Disability Thinking,” where every other week he opens Disability Blogger Linkup.
Books are coming through at an amazing rate. To point out just one place to find some for a younger audience, head to Disability in Kidlit.
Intersectionality is a word I didn’t know in 1996, but just as I’m thrilled that so many young folks are writing about disability (many known as Generation ADAers), I’m as excited to see the expansion of Disability Culture beyond older white guys (like me). And I’d be remiss if I didn’t point out Krip-Hop Nation: It's More than Music, one of my favorite sites and again information I use in teaching.
As I’m sure is obvious, the difference between 1996, when some of us fought to establish that a Disability Culture existed and how Disability Culture is perceived today is phenomenal. So one last note:
A disability culture conference scheduled for early September 2016, in Taiwan, is using “We Are Who We Are,” as the conference title. This is one of many indications of how times have changed.
Leading me to ponder (perhaps for future writing): how have times changed—and how haven’t they?
Steve’s books that relate to this blog are:
Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride; Surprised to be Standing: A Spiritual Journey; and Ed Roberts: Wheelchair Genius.
See Steve’s Amazon Page for more.