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Promoting Disability Pride: Back to the Beginnings

1/1/2015

5 Comments

 
Promoting Disability Pride: Back to the Beginnings
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, January 2015



About 21 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)
disculture@gmail.com

5 Comments
Darma J Canter link
1/6/2015 03:43:41 am

Lead on, Steve. IL philosophy has been betrayed in Michigan and our CILs have been co-opted by the agencies and institutions that still oppress us. My local CIL Board president doesn't even acknowledge there is such a thing as a "disability community." I am reading everything I can to bring Michigan CILs back to a consumer-controlled, peer delivered support system focused on CHANGE.

Reply
Liinda Costal
3/30/2015 07:15:17 am

The first thing ACL needs to do is to have the majority of those who are developing regulations for home and community based services. Right now they are less than 7 out of over 350 people

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RHJunior link
2/7/2016 06:22:41 pm

The problem with your "disability pride" and "disability culture" is that you have ended up with an ever growing population of people who get their very identity not from their humanity, but from their handicap. People who, even when presented with a treatment or a cure, would go through life lame, halt, deaf and blind rather than accept it for fear of losing their place in their "community" of disabled or their 'identity' as disabled people. I have seen hearing disabled people react in ANGER to things like cochlear implants, because it 'undermined their cultural identity.' Disability culture has mestasized into another tumor of victim culture, where mainstream society can no longer call an objectively bad thing (like being crippled, and yes, I used the 'bad' word for it) bad, for fear that some identity-tokenist will take it personally.

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darma j canter
2/8/2016 07:12:08 am

Wow! RH,your humanity is a little tight around the neck. Mankind is made up of many cultures and identifiable groups; hopefully each individual human has a sense of who he or she is in compliment or contrast to the whole. I am a woman, living in the US, I married, worked, retired, I'm a grandmother, a Democrate, a pacificist, college graduate, I am Disabled and many other things that identify me; and some of which I identify with. I don't need your approval to validate me or my community. That is the humanity part. I expect you to accept me as a unique individual however I define myself and I will try to accept you with all the complexities you acquire living on this planet, together. I will try to not think some part of you needs to be changed in order for you to be.

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Utah WhatsApp link
1/29/2021 04:46:38 am

Great post thaanks

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