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                                      Why We Tell Stories

2/26/2015

1 Comment

 
Why We Tell Stories
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© 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.
 

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                                   "My Top 25 Disability Pride Songs"

2/2/2015

18 Comments

 
                                                            My Top 25 Disability Pride Songs

                                                Steven E. Brown
                                Co-Founder, Institute on Disability Culture
                                        www.instituteondisabilityculture.org
                       © All Rights Reserved, Institute on Disability Culture, Jan. 2015

I love music, and as someone who came of age as a protester in the late 1960s and early 1970s, I appreciate how music, protest, culture, and change, connect. 

Someone once attributed Emma Goldman with saying, “If I can’t dance, I don’t want to be part of your revolution.” With that in mind, I share my top 25 Disability Pride songs. Someone else would compose a different list, and that is great because it means we have many songs to choose from. 

Some of these songs were at the top of my head when I sat down to write. For example, Jeff Moyer’s “For the Crime of Being Different,” #1 on this list (and this is the time to state that there is no priority order to this list other than when I thought of each song or artist), may not fit someone else’s definition of pride, but for me this stark rendering of the life Mark, Jeff’s late brother, led in his early years, shows the depths of how music can be used to protest injustice and demonstrate pride in who we are, no matter our diversities. Johnny Crescendo sings in “Pride,” listed at #3: 

                                 “Pride is somewhere in your soul…
                                  Pride is the peace within that finally makes you whole 
                                  Celebrate your difference with pride…”

“For the Crime of Being Different,” is a clear statement of why we need pride in our lives, how much things have changed-and how much they have not.

In compiling these songs, I included a variety of genres, cultures, and countries, because musicians with disabilities are creating in all of them and because, with international access, those of us in the U.S have access to, and are influenced by, what is happening all over the world. While compiling this list, I realized once again how many songs of our lives are out there and how many are yet to be experienced. Each time I looked up a song to find lyrics, examples, or websites, I discovered songs, artists, or styles, and often, new information about the songs or artists. The bottom line, as Van Gogh sings in “Unbound,” #25, is:

                                        “It’s time to take the reins and
                                         Break away the chains that are holding me
                                         I am unbound
                                         There’s no stopping me
                                         I am unbound…
                                         Tell the world I am unbound.”
                                              
                                                 The Songs

1. Jeff Moyer, “For the Crime of Being Different.” One of my favorite Jeff Moyer songs because it rings true, yesterday, and unfortunately still today, even though it was written many years ago. Jeff is known, among many other things, for being the “resident musician” of the 1977 504 Federal Building takeover in San Francisco. Check him out at: www.jeffmoyer.com

2.  Elaine Kolb, “We Will Ride.” An early ADAPT anthem in the fight for lifts on all public buses. Elaine shares the song is still evolving and she’s adding verses about riding in customized wheelchairs, that is, wheelchairs designed to meet the needs of each rider. She’s at: dreamprod4u@webtv.net

3.  Johnny Crescendo (aka Alan Holdsworth), “Pride.” An English activist and singer-songwriter, currently living in the U.S., this song is on his iTunes collection, “Piss on Pity,” and at: https://myspace.com/johnnycrescendo/music/song/pride-8980213-8781397

4.  Jane Field, “The Fishing is Free.” The title song of a 1994 cassette from a Canadian artist, I use this song in presentations and trainings to this day. As far as I know this is Jane’s only disability-related music. It’s full of humor and incisiveness. In compiling this list the contact information I have for Jane is no longer valid. Perhaps she will see the list and update?

5.  Jane Field, “Disabled People Do It.” A song about sex, with humor, on the “The Fishing is Free” album.

6. Kim Palmer, “Allergic to the 20th Century.” “Pardon-moi, don’t mind me, I’m just allergic to the 20th century,” and “I’m not dead yet, but mister please put out that cigarette.” A sampling of lyrics from an up-beat anthem about the deadly consequences of what is being done to our environment by the late Kim Palmer. A good explanation of the song, Kim’s life and these issues are at: http://lindasepp.wordpress.com/2014/05/10/kim-palmer-was-allergic-to-the-20th-century/

7.  Mark Goffeney, “We Are The Same”: Known as “Big Toe” because he plays the guitar with his feet. This song clearly states, “We are more the same than you may think, You and me we are the same…” See: http://www.markgoffeney.com

8. “Free Our People.” Another ADAPT anthem, sung by many, including Diane Coleman, who is pictured along with lyrics at: http://www.disabilityprideparade.com/history/Parade06/freeourpeople.php

9.  Beethoven’s Nightmare, “Turn It Up Louder.” Self-described as the “Greatest Deaf Rock Band in the World.” See their work at: http://www.beethovensnightmare.com/

10.  Mike Higgins and Ian Stanton, “Tragic But Brave.” Sung by both English artists, but probably better known by the late Stanton. See tribute and lyrics at: http://tonybaldwinson.files.wordpress.com/2014/09/to-ian-with-love-programme-7-december-1998.pdf

11.  Jeff Moyer, “Do You See Me as an Equal?” This is an older, pre-ADA song, but it still speaks to me. As with #1, see www.jeffmoyer.com

12.  Johnny Crescendo, “I Love My Body.” The title says it all and is also available at his iTunes collection, “Piss on Pity,” and at: https://myspace.com/johnnycrescendo/music/song/pride-8980213-8781397

13.  Klaus Kreuzeder, “Tumbling Derwish.” German saxophonist who had polio.  An English Wikipedia page is at: http://translate.google.com/translate?hl=en&sl=de&u=http://de.wikipedia.org/wiki/Klaus_Kreuzeder&prev=search

14.  Lindsay Carter, “Useless Eaters.” A hauntingly beautiful song, with the proud chorus, “We’re not going to let you wipe us out, we’re here to stay, our genes are fine, our DNA is A OK.” I first heard the late Carter on the compilation “Lend Us Your Ears,” by English artist Angryfish (aka Robin Surgeoner—see #24).

15.  Sean Forbes, “Watch These Hands.” Perhaps the most commercially successful of deaf rappers. More at: http://deafandloud.com/

16.  Signmark, “Fighting.” According to his bio, this Finnish artist released the world’s first sign language hip hop DVD in 2006. In this song, the chorus, which includes “Be brave-don’t fall down, Be free –do it now,” is sung, signed and captioned. See http://www.signmark.biz/ and https://www.youtube.com/watch?v=gfNoMJ1GYzM

17.  Staff Benda Bilili, “Mwana.” I like many of their upbeat, up-tempo songs. A group of street musicians, many of whom had polio, and all of whom have disabilities, from Congo, who have become famous internationally in recent years, especially in France and Europe. Benda Bilili means “look beyond appearances,” and in addition to their music a documentary about the band premiered at the 2010 Cannes Film Festival. Check out “Mwana” with NBE at: https://www.youtube.com/watch?v=eqga1CmJKBU 

18.  Station 17, “For Those About to Screech.” Formed in 1989, a group of individuals living in a German institution became a rock band collective, then a successful rock band with a focus on electronic dance music, whose sound has evolved over time. See http://17rec.de/artists.htm and http://www.odditycentral.com/news/the-inspiring-story-of-station-17-germanys-disabled-rock-group.html

19.  Leroy Moore, Jr., “Hip-Hop Hear This!” The founder of Krip Hop Nation issues a clarion call to hip hop to pay attention to the existence of, as Leroy then labeled it,  “Crip-Hip-Hop.” See http://poormagazine.org/node/1681 and take a look at http://kriphopnation.com/ for all the work that is being done, including and beyond music.

20. Lady MJ Warrior! “No More Tears Inside.” From England, a rapper/singer who is one performer on Krip Hop Nation’s MCees with Disabilities. She’s also getting gigs these days in the U.S. See http://ladymjwarrior.wix.com/peace#!__page-1 and 
https://www.facebook.com/KRIPHOPWORLDWIDE/posts/102357923292959

20.  Kounterclockwise, “Krippled Boy.” Urban Krip Hop from husband and wife collaborators Deacon Burns and Kaya Rogue. They create songs, videos and have an animated movie called Forever-Land, which is subtitled at: https://www.youtube.com/watch?v=SxDzRy5jRMM. “Krippled Boy” (not captioned) is at: https://www.youtube.com/watch?v=52LJTfk4vVU#t=10. Check out everything at: www.kounterclockwise.com

22.  Prudence Mabhena and Liyana, “Going Nowhere”.  A band and their lead singer, with the voice of an angel, from Zimbabwe. I had the pleasure of seeing Prudence at the 2010 International VSA Arts and Disability Festival in Washington, D.C., where she performed several songs. Check out “Ipi Ntombi (Where’s My Lady”) at: https://www.youtube.com/watch?v=xzGll1-K3Nk. I can’t find a captioned version.

23.  Keith “Sho’Roc” Brown, “I’ll Survive.” “Sho’Roc”, another deaf performer, focuses on pop music and I can easily imagine hearing this song on the radio. See https://www.facebook.com/shoroc81/posts/131988853666364 and https://www.youtube.com/watch?v=BryLD4QF0z0

24.  Angryfish (aka Robin Surgeoner), “Song of 2 Halves.” A former athlete, current activist and artist from England, Angryfish has put out his own music and a compilation of various artists (see #14). In November 2014, Surgeoner promoted and performed at the Why? Festival, a Micro-Festival of Music, Comedy, and Performance. See what he’s up to at: http://www.angryfish.co.uk/

25.  Van Gogh, “Unbound.” This rock band from Georgia in the U.S. has been producing music since the early 1990s. See: https://www.facebook.com/VanGoghmusic/ to hear this song.

                Comments, or your favorites, with DETAILS welcome, 

                and we'll see how to grow the list.
18 Comments

                  Why the Focus on #PromotingDisabilityPride?

1/23/2015

6 Comments

 
Why the Focus on #PromotingDisabilityPride?
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, January 2015



Early in 2014, I made the decision to officially retire from the Center on Disability Studies (CDS) and the University of Hawaii. Some of you reading this may wonder why, since I retired, I keep promoting things like my course on Disability History and Culture and the Pacific Rim International Conference on Disability and Diversity (@PacRimHawaii). The simple answer is I remain Affiliated Faculty at CDS, and, of course, want to continue to promote the good work accomplished there. At the same time, I have become much more active in my role as Co-Founder of the Institute on Disability Culture. Since we founded the Institute in 1994, there has been an explosion about disability culture (see: http://www.instituteondisabilityculture.org/blog/-promoting-disability-pride-back-to-the-beginnings).

So, as I began to contemplate retirement and what it would mean, since I never intended to stop working, I had a chance to talk with lots of people about upcoming changes in our lives. One of those people was Andy Imparato (@AndyAUCD), a keynote speaker at the 2014 Pac Rim Conference. Andy commented he’d really like see a focus on pride. And it kind of hit me that disability pride, so crucial to the Institute beginnings that we shortened our mission to the Promoting Disability Pride slogan, had perhaps been a neglected area in the past few years.


I wondered how I might address it?

Fast forward a few months, and a young black man is killed in Ferguson, Missouri. Protests begin to gather around his killing, which many people perceive as murder by police. I wasn’t getting a lot of information about the situation from typical TV news sources. I’d been on Twitter (@disculture) for a few years, without really seeing a lot of ways to use it in my life. But, suddenly, the best information I was getting, not only about Ferguson, but news of protests, and in fact, news in general, was coming from Twitter. From having previously checked my Twitter account about once a week, I was now looking into it several times a day to see what I might find. I became enamored with Twitter, perhaps bordering on addiction. It had become my source of information. I could read about #BlackLivesMatter. I could see people adding  #DisabledBlackLivesMatterToo and then early in 2015 came a campaign with the hashtag #StopAbleism2015.


I became convinced that one way to promote disability pride was to encourage a #PromotingDisabilityPride campaign. I thought I’d try to kick it off sometime in January 2015. And today, Jan. 23, 2015, seems like a great day to do so, because it marks what would have been the 76th birthday of one of my heroes and someone I was fortunate to know towards the end of his life, Ed Roberts. This year also marks the 20th anniversary of Ed’s passing. Years ago, I published a book in CD form only about Ed, targeted to 5th and 6th graders. I have been working on revising the book and getting it into print form this year. Coming soon.

So starting today, I offer a number of #PromotingDisabilityPride tweets. Each tweet could probably be expanded to a page or more of its own. But tweets are short and I hope they will both prompt others to add their own tweets and to lead people to wanting to search and learn more about these people and events.

In honor of Ed’s birthday and of the 2015 25th Anniversary of the ADA signing this coming July I begin the #PromotingDisabilityPride campaign with:

#PromotingDisabilityPride Disability Rights Pioneers. See, for example, Ed Roberts http://mn.gov/mnddc/ed-roberts/

#PromotingDisabilityPride Protests. See Power of 504, https://www.youtube.com/watch?v=SyWcCuVta7M&index=5&list=PL4EEE286B0AA7A774

#PromotingDisabilityPride our History and more. Disability Visibility Project http://disabilityvisibilityproject.com/

#PromotingDisabilityPride Celebrating ADA. ADA Legacy Project http://www.adalegacy.com/

More to come….See you on Twitter 

6 Comments

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

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