Steven E. Brown
Co-Founder, Institute on Disability Culture
© All Rights Reserved, Institute on Disability Culture, February 2015
Recently, I heard someone say stories were a waste of time. In the context it was stated it made some sense, because stories often become a way of avoiding hard truths. But it still rubbed me the wrong way, and it continues to do so. Not that, that in itself, is such a big shock: my most well-known poem is “Tell Your Story;” (find here: _ ) I still revel in a teaching evaluation from decades ago stating something like “he’s not a ham, but a great storyteller;” and I am a writer.
Not: I write, which I do and many of us do these days. Some people write as a tool, to convey a philosophy or point or view or other reason. But I write for the simplest of reasons: because I must. It’s not a choice—or at least it doesn’t feel like a choice. For me this doesn't mean I’m always putting pen to paper, or more likely in my situation, fingers to the keyboard--but when I’m not doing that I’m still writing—in my head.
In fact, I have purposely thought about articles or other writing sometimes for years before writing. There are different reasons for doing this. Sometimes I feel I need to have some distance from the topic before I can address it the way I want to. This was the case with an article I wrote quite some time ago, called “Hooked on Symptoms” and which is re-published in my book, Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (see: _ ) - and still available on the finest internet stores:). Other times, I was simply focused on other projects and a particular writing waited in the wings. Still other times, I might wish to mull something over and turn it over in my mind before attempting to put it on paper. In fact, I have been doing this now for quite some time with what I hope will eventually become writing that connects the work I have been doing in disability culture with that of the energy/wellness work I do. But I’m still not ready for that. So I still mull, and read, and think.
But if stories are not a waste of time, what are they? First, we all have them. They are the stories of our lives. While we may not be like cats, with nine lives, we have a plethora of stories about our lives: our upbringing; our schooling (or lack of it); relationships; worldviews; the list could go on. There is a reason that myths, religion, and spirituality have been around as long as humanity. We have always counted on stories in some fashion to connect our stories with those of others. We use stories to understand ourselves and our connections with others. When our stories do not resonate with stories of someone else we often find ourselves in conflict. There are plenty of examples of that daily, all we have to do is turn on the TV, or whatever format we choose (if we choose) to get our news.
One of the reasons I initially connected with disability culture, for example, was it was a way to bring together my passions for history, popular culture and human rights. And as I often say it’s a fun way to do so, via art, music and other cultural artifacts. So I continue to explore my own story and that of others. There are lots of ways this is approached in 2015, the 25th anniversary year of the signing of the Americans with Disabilities Act (ADA). The ADA Legacy Project focuses on the themes of “Preserve, Celebrate, and Educate.”(check it our here: _ ) And the Disability Visibility Project (check it out here: _ ) is constantly exploring varieties of stories.
These projects and the stories we share in the disability rights world are so vital because for so many centuries our stories have been neglected or ignored or devalued. We will continue to tell—and expect people to listen—to our stories.
When we tell our stories ourselves we are letting the world know we are here, we are to be valued, and expect, no-demand!, to take our rightful, equitable place in society just the way we are.