About 23 years ago, in early 1994, Lillian Gonzales Brown and I created the Institute on Disability Culture. Our mission statement, vision and purpose all fit in this statement, “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.” We often shortened the statement to simply “Promoting Disability Pride,” which we printed on business cards and T-shirts.
In 1994, the idea of Disability Culture in the United States was just beginning to take hold, though none of us knew how successful it would become. We were in the midst of a trend, with the development of the University of Minnesota Disabled Student Cultural Center in the early 1990s and recognition of the late, great Berkeley disability performance poet Cheryl Marie Wade’s artistic contributions with an Arts Solo Theatre Artist’s National Endowment for the Arts Fellowship in 1994. In 1993-94, I received the first U.S. funds to research disability culture, which resulted in the monograph, Investigating a Culture of Disability: Final Report.
But, at the same time, disability culture was controversial. When I first discussed my ideas about disability culture in the late 1980s and early 1990s I was often greeted with skepticism, ranging from the question of isn’t a focus on disability culture separatist to “there can’t be a disability culture because we’re Americans.” This last one stumped me until I realized that folks did not want to add another “shameful” identity to the ones already socially perceived as negative, like being a person of color or non-heterosexual, or from a minority ethnic or religious group. Just writing the previous sentence makes me think about how much times have changed—and how much they haven’t!
The controversy of disability culture is long past. When I look up the phrase “disability culture” on the Yahoo and Google search engines I get thousands to millions of returns. Today, as I write, Jan. 1, 2015, I see 73,800 returns on Yahoo and on 84,100 hits on Google.
In the mid-1990s, Lillian and I had opportunities to travel throughout many states and several countries discussing disability culture. Then, both our disabilities changed, and we spent more time at home. I had lots of time to write and in the early 2000s, not long after we moved to Hawai‘i, Movie
Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride was published in 2003. Not long after that my disability changed again, in ways I never expected, and which I wrote about in my 2011 memoir, Surprised to be Standing: A Spiritual Journey (Books available at online booksellers:). I also began working full time at the Center on Disability Studies (CDS) at the University of Hawai‘i (UH).
During this time, my work in disability culture became mostly tangential to the work I did at CDS, though there were opportunities for it to show up, especially during 2 projects providing professional development for faculty to work better with students with disabilities (see www.ist.hawaii.edu and especially http://www.ist.hawaii.edu/modules/multiculturalism/theory/index.php?counter=7), and in my teaching of the various CDS graduate certificate in disability and diversity studies courses (http://www.cds.hawaii.edu/certificates).
I was especially excited a few years ago to be able to create a course, which as far as I know is unlike any other in its time and geographic scope, “Disability History and Culture: From Homer to Hip Hop (see http://www.cds.hawaii.edu/news/10202014/cds-offers-course-disability-history-and-culture). It continues to be offered as an asynchronous (not live) online course through the UH Outreach College.
In the summer of 2014, I officially retired from the University, but as I keep saying not from life or work. Several people have asked what “retirement” means, and others have offered suggestions for what they’d like to see. A couple of years ago, a colleague asked me what drove my overall work? I didn’t really like the response I gave her and as I thought about I realized why. Because I’ve had the same mission/purpose/vision for over 20 years now and it’s “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.” All I do is in some way geared to that goal and I don’t see that changing any time soon.
For that reason I set a goal for myself to focus in 2015 on really getting the idea of #PromotingDisabilityPride out there once more (or more). I also set about to better learn how to use Twitter (and other social media venues), hence the hashtag and I’m still in the midst of that learning curve.
Once a long time ago, the late, also great disability rights pioneer Pat Figueroa, commented that he thought an online newsletter I did years ago, the Manifesto, might have been the first blog. Maybe it was; maybe not. But I am trying my hand at a blog again, this time via the Institute on Disability Culture website. And the site itself will be undergoing some changes this year—though we don’t know what they are yet.
So, as I wish everyone a healthy, prosperous, happy, and just New Year, I hope that we will be able to return to our roots of 1994, with the advantages of the technologies of 2015 and the lessons and knowledge of the past 21 years and continue a focus on “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world” and on #PromotingDisabilityPride.
Steven E Brown (Steve)