Discovering “Authentic Disability Culture”
Meet the author
Preface: A Note on Origins
In 2011, I attended a conference at the United Nations in New York City. A panel called ‘Authentic Disability Culture’ caught my attention. I listened to a short presentation, looked at the art around the room, and headed toward the door. Before I left, I handed a business card to the woman who led the session. She looked at the card and gasped. She asked, was I the one who had been writing about disability culture? She told me her idea of “authentic disability culture” came from reading my work about it, and really wanted to interview me while we were both in New York. That’s how I met Hiljmnijeta Apuk of Little People of Kosovo — artist, lawyer, and advocate. As an artist, her work was computer generated and disability themed. She offered to give me a copy of one of her pieces. I chose one called “Freedom of Expression.” More than a decade later it still hangs in our house. It’s an image of two people with visible disabilities dancing, one using a wheelchair and one an amputee, reflecting both Disability Culture and one of the aspects of it I love — it can be fun!
Telling Our Stories:
This is preface to a book I’m currently working on and publishing parts of it on Medium. The book will include many stories of people who occupy multiple roles in Disability Culture and often represent multiple identities.
My own roles, for close to four decades, have been as a researcher, promoter, recorder, and creator of Disability Culture. In the beginning, Disability Culture was controversial.
In the book, I share some early history of Disability Culture, why it was controversial and how it’s moved on over the decades from controversy to thriving.
I hope to share Disability Culture with diverse audiences — those who may be completely unfamiliar with it as well with those who have been aware of –and perhaps even a part of — Disability Culture for some time. I hope the book will appeal to people with and without disabilities.
About me:
I’m a historian by academic training and am aware of intersections between Disability Culture and other rights movements. I’m also a disability rights activist.
My story, or those of others described in this book, may not be your story. Or to some it might feel familiar. To be clear about who’s writing this story:
I’m a white, heterosexual, cisgender, middle class U. S. citizen raised in a Jewish household in the U.S. Midwest (primarily Michigan); who moved west (Arizona) before I was 20 and who’s also lived in New Mexico, Oklahoma, California, and Hawaii. I’ve traveled throughout much of this country and in several other countries. I’m an English-only speaker but I’ve traveled in countries where English is not the primary language. I’m a husband, father, and grandfather, who’s been divorced and remarried. I’m a historian, writer, disability rights activist and someone who’s had a disability from early in life (five — though I didn’t know the term or concept of “disability” until years later). I’ve worked in universities and in disability rights organizations. I’ve been writing for as long as I can remember. I’ve experienced intense, chronic pain most of my life and I’ve written a lot about that experience.
I’m sharing the above to state plainly that like many, if not most, people, I am many things and have many characteristics. In writing, we often take the complex and simplify — because we need to communicate in a way that’s understandable to many. But disability is not a simple topic. Neither is culture. Each of these two words and concepts are value laden — sometimes with explosive values and meanings for each of us — both as individuals and in the various groups we engage in.
Discovering Disability Culture:
‘Discovering Disability Culture’, the book’s title, is meant to convey the excitement of discovery and in so doing includes many examples of what Disability Culture is. I think about how we got to the idea and implementation of Disability Culture, what impact has it had, how has it interacted with Disability Rights and Justice — and other movements. When I do presentations, I share as many samples as possible. This is because for many people seeing examples is what brings Disability Culture to life.
I will include some of my own story and poems, often to open chapters — ways I have contributed to this culture.
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My first published article, when I started writing about disability culture in the early 1990s, was called “Creating a Disability Mythology.” In it, I wrote:
“I wish to see us not only recognize our disabilities, but to celebrate them. To sing clearly and out loud our praises, our struggles, our failures, and our successes: our lives. One means of declaring our indomitable spirit and strength is mythology. To take our lives, our daily encounters, our tears and our laughter, and raise them to the level of an epic story: a tale with heroes and villains; beautiful places and dank dungeons; glorious battles resulting in tremendous victories fought against immeasurable odds and ignominious defeats causing our brethren to shake their heads in sorrow.”
I don’t know if I knew when I wrote “Creating a Disability Mythology” that I was exploring a backstory of Disability Culture. I do know I wanted to share that our lives were not tragic or “less than”. This is not to say that none of us knew tragedy — we did and still do; and we were often subjected to discriminatory treatment — we still are. But neither tragedy nor discrimination are the complete stories of our lives. We indeed often have unrecognized strengths and indomitable spirits. Successes as well as struggles.
Thoughts about Language:
Here is probably as good a place as any to share some thoughts about language. First, the term “person” or “people with disabilities.” This is known as “people first language” and I often use it because in the early 1980s, when I got involved in the U.S. disability rights movement, disability activists were moving language from “handicap” to “disability” and from using disability as a noun — an example might be “the broken arm in Room 312”, hospital shorthand — to an adjective, the person with a broken arm in Room 312. Many people use this language — some even say it’s the only “correct” way to speak about those with disabilities. But there are many other descriptors as well. For example, some activists prefer what’s known as Identity First language: I’m a Disabled Person. Many activists who had polio call themselves ‘polios’. There are also ‘autistics’, as self-defined by autistics. Long ago, I knew a person who used “people labeled disabled.” Another descriptor these days is, “people who experience disability.” The point is there are a lot of ways to describe who we are. What is “right” is often an individual preference and the only way to know that is to ask the individual. An entire book could be written about this topic. I usually use “people with disabilities” or “disabled people” or some variation of those two. When quoting I will use whatever the person or group being quoted says.
I often capitalize Disability Culture. Why do that? As mentioned, when first discussing this concept in the mid to late 1980s, it was controversial. One way to emphasize the importance of the concept was to capitalize. Another reason was to show that it was a topic or movement worthy of being singled out as different from other concepts, such as Disability Rights or the Disability Rights Movement — even though there are connections between all of these.
Enticed?
This introductory information, I hope, can stand alone, but also lead you to want to know more. Did it?
Steven E. Brown (Steve) lives in Arizona, where he usually delights in the sunny weather (though 110 is a bit much:). I’m a Chicago Cubs fan who spent time as a Bleacher Bum in the late 60s and early 70s. For most of my life, I’ve loved to travel and have been to 40+ states and several countries. Due to unforeseen circumstances (including but not limited to the Pandemic), my last travel was in 2018 to Chiang Mai, Thailand. I’m currently working on a book about Disability Culture. You can find more info about me at: http://www.stevenebrown.com/what-we-mean-by-disability-culture.html
