Manifesto

Thriving in 2018
1/6/2018

  Thriving in 2018

Steven E. Brown and Lillian Gonzales Brown
©2018 institute on Disability Culture, All Rights Reserved

A welcome to, and hope for, a happy, loving, healing and light-filled 2018 for us all.
www.instituteondisabilityculture.org/manifesto/survive-and-thrive

About a year ago, I published my last blog post, “Survive and Thrive,” (www.instituteondisabilityculture.org/manifesto/survive-and-thrive) based on an email request to respond to goings-on around the country and world. Then, I (and we, Lil and me) managed to survive 2017, still living in California, and assessing still whether it makes financial, and other sense to continue to do that.
I managed to survive 2017, without falling, the first time in at least 2 years, though my knees remind me daily how they feel about 66 years on the planet. I managed to survive 2017, without a new wheelchair, though I continue the process of working within a frustrating system to try and get one. In sum, I survived 2017. I now look forward to thriving in 2018. As I reflect on 2017 and look forward to 2018, I choose to focus on the positives of the past year, which include:

Family: Lil and I continue to love one another, while we seek the living space that will best work for us. She continues to heal from her dramatic, and traumatic, 2016 fall, and she also made it through 2017 with no falls. We have amazing grandchildren (and their spectacular parents!) who we get to Skype with on a regular (sort of) basis, and watch them grow--from too far away. We have loving siblings and extended families near and far. And, families of intention.

Friends: It is not an understatement to say friends (and family) sustained us through the traumas of 2016, and continued to be amazingly supportive in 2017. From rides, to meals, to advocacy, to sharing stories, we have been blessed to welcome friends (and family) on their way to and from Thailand, Peru, LA, Hawaii, and probably other places I’m forgetting. Seeing friends in person, via social media, and any other way that works has been one of the highlights of advancing technology.

Teaching: Technology also continues to be instrumental in the classes I’ve been teaching. In both spring and fall semesters, in 2017, I taught 2 online sections of the undergrad course I created in 2012, “Disability History and Culture: From Homer to Hip Hop.” Beginning in early January, I’ll teach a grad class, again online, called “Disability History Through the Ages.”

Work: In summer and fall of 2017, happily working again, this time as a Technical Assistance Consultant, with the Association of University Centers on Excellence in Disabilities (AUCD). While working on several projects, I was glad to get back to the “Diversity and Inclusion Toolkit,” (www.implementdiversity.tools/) created in 2015. I continue to promote it as an excellent resource.
I also managed one trip in 2017, to Houston in May, to continue training about Whole Community Inclusive Planning with the BCFS Health and Human Services Emergency Management Division (bcfsemd.org/). A highlight outside of the work of this trip, was getting together with a longtime friend. The training itself came before the Houston Flood and many other disasters, including the fires in the northern Bay Area, not too far from us. While none of the fires were too close to where we live, the smoke did find its way here. And I learned, once more, how much I don’t know about emergency planning and response. Fortunately, lots of people are now working on this from a disability perspective. [see some resources at: www.aucd.org/template/page.cfm?id=544 and www.jik.com/disaster.html]

Writing: I didn’t publish a whole lot in 2017, but that doesn’t mean the activities of the year won’t show up in writing eventually. An example of this is that beyond teaching, my final commitment from my years employed at UH, came to fruition as a chapter, “Changing America’s Consciousness: A brief history of the Independent Living civil rights movement in the United States,” in The Routledge History of Disability edited by Hanes, Roy and Brown, Ivan, eds. Hanes, R., Brown, I. 2018: and Hansen, N. E. (Eds.). (2018), New York: Routledge, pp. 485-499. (smile.amazon.com/Routledge-History-Disability-Histories/dp/1138193577/ref=sr_1_1?s=books&ie=UTF8&qid=1515024270&sr=1-1&keywords=roy+hanes) For those of you who may remember this, this chapter is in large part based on the first section of my 1994 monograph “Investigating a Culture of Disability: Final Report”.
I continued sharing my love of reading in “’The Right to Live in the World’: More Books for Disability Advocates and Those Who Want to Learn about Disability Advocacy” - www.meriahnichols.com/more-books-for-disability-advocacy/

Presentation: One of my favorite aspects of social media and the expanding Disability Rights Movement is being able to work with and promote many diverse and younger advocates. I was thrilled to join with Alice Wong and Vilissa Thompson, in in a conversational workshop called “Unapologetically Disabled: A Conversation about Disability Culture,” at the Section on Chronic Disease and Disability, Western Social Science Association Annual Conference, San Francisco, CA, April 2017.

Lil presented at an annual National Coalition of Latinx with Disabilities (www.latinxdisabilitycoalition.com/) conference in Berkeley, which I happily attended. Speaking of Lil, she writes:

< Hi everyone, if it wasn't for Steve you probably wouldn't get a letter from us until March or April. Time flies! Do you find yourself asking what day of the week it is? Please tell me it's all part of aging! Combine aging with the brain fog that's part of my disability, and it's amazing I know what month it is. Ok, enough complaining. I'm wracking my brain trying to think of things to share, but retirement has come with life moving more slowly and less eventfully. Actually, I kind of like that. things that I used to get done in 45 minutes are now my main activity of the day. For example the day I shower I don't plan to go grocery shopping. It's too much of an expenditure of energy in one day. So, I'm a lady of leisure.
We spent some time this summer going through our rock collection with shrinking it in mind. I don't think we did a great job of that! We are selling what we have decided we could part with, but as they sit out on the dining table we keep taking back specimens we can't bear to part with. I would like to get my dining table back though! If you'd like to have a beautiful mineral specimen gracing your home, let us know. I'm sure we can come up with a price that works for all of us.
Our search for a place to live continues. We've given ourselves until May to figure out where we are going. I would so like to be able to teleport so we could live in the southwest desert, but pop over here to be with friends. I keep telling myself that someone in this area is going to move, and we could move into their place. If you know of anything let us know!
So, this year has been a quiet year, which is mostly fine with me. I love spending time with my friends near and far, so if you think of giving me a call, do it! I'd love to hear from you. In the meantime, take care, and be well. Love LIL>

Steve again: Below see updates related to my practice of the energetic technique called
ReConnective Therapy and the Institute on Disability Culture.

ReConnective Therapy: I’m in the process of updating the website that discusses this work, perhaps finding a new email address to go specifically with this work, and in 2018 immersing myself in a year-long Practitioner Training program. More about this to come, especially for those of you who have been interested in or followed me on this journey. Check out: www.healinglightworkers.com/reconnective-therapy.html

Institute on Disability Culture: We plan to re-commit ourselves to the Institute in 2018 and have begun minor changes to the website, with more in the works. I still find the mission/vision/purpose statement of the Institute appropriate guidance: “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.” (Please note activities of the Institute can also be supported via Amazon Smile here:  www.instituteondisabilityculture.org/
My books, (so far:) “Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride,” “Surprised to be Standing: A Spiritual Journey,” and “Ed Roberts: Wheelchair Genius” can most easily be found here:

smile.amazon.com/Steven-E. Brown/e/B004H9QX7Y/ref=sr_ntt_srch_lnk_1?qid=1515024336&sr=1-1

To conclude, a metaphorical toast to us all for a thriving 2018!

Survive and Thrive
1/18/2017

Survive--and Thrive
by Steven E. Brown
© 2017, Institute on Disability Culture, All Rights Reserved

Many years ago--actually decades ago now--a friend gifted me a button with the saying “Gentleness is Strength.” I didn’t understand. She explained I was gentle, but there was an underlying determination (most of my life I’ve labeled it perseverance) that shone through the gentleness.
A few years later, my sister introduced me to the music of Holly Near (www.hollynear.com/), with a “live” album. I loved it, especially a song called “Gentle, Angry People.” I even wrote an essay in my book, “Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride” (https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=ntt_dp_epwbk_0), with that title. In the introduction to that piece, I wrote “I became more convinced each day that people with disabilities could not obtain our freedom unless every other oppressed group also found liberation.”
Two years before the initial publication of this essay I joined my colleagues at the independent living program in Norman, OK in walking out from our jobs (an essay about the walkout is also in “Movie Stars”). This was easily the most radical action I’ve ever taken: abandoning a job, while the father of a young child—and it also became my most critical learning experience—because I learned I possessed skills and inner resources that enabled me to survive—and eventually thrive.
I’ve been reminded of these thoughts and experiences—and many more—in recent months. I find myself returning often to the past—mine, and history in general—perhaps not surprising—for a historian. I watch in horror as the prospects of decades of hard work is being systematically torn apart—at least in theory, we have to wait a bit to see what reality will bring—but we know, at the very least, that generations of advocacy to include more in our body politic and socio-cultural-economic environment than white, male, non-disabled property-owners, is being challenged.
I watch in horror as well as many of my compatriots viciously attack those who are viciously attacking them. While I understand it, I’m not happy about it, because I believe what we put into the world returns in some way from the world. I also watch in amazement as people forget—no, that’s not right—they don’t seem to have learned, history. We believe that what’s happening now is new: that, for example, people with disabilities have never before been attacked, maimed or killed. Yet, we have centuries of evidence that we have. We believe racial attacks are more vicious now than ever, yet forget somehow the ignominious founding of this country on the bodies of slaves. Even the scales may not be that different. Millions have been killed, mutilated, sterilized, and ostracized over thousands of years of human history because somebody had the power to do that.
One difference today though is the role of social and other media and our ability to communicate instantaneously. We think something in 2015, “happened back then.” No wonder we don’t have a sense of history.
All this comes up for me in many ways. My friend, Naomi Ortiz, of the wonderful blog, “Self-Care for Social Justice” (http://www.selfcareforsocialjustice.com/), wrote to a bunch of people not long after the 2016 elections. The email began, “Dear Elders. Many of you have been able to sustain doing this work because you’ve created tools and practices and the faith which has allowed you to weather a lot. So, I thought I’d reach out and ask if any of you are interested in sharing advice, thoughts, U-tube videos, readings, jokes, perspectives, poems and/or truths that are speaking to you at this moment.”
I’ve thought about this request pretty much every day since it arrived. When it first crossed my desk one of my reactions was Naomi herself writes beautiful blogs and several that she wrote several after the election helped sustain me.
Right after the election I thought about the days when Reagan was elected President and as I write this I’m thinking about Nixon. When Nixon was first elected President, in 1968, I was a teenager, still in high school. By the time he resigned in 1974, I was in graduate school, had been an anti-Vietnam war protestor, and someone who had taken those protests to the streets, both in the college town I lived in during the late 1960s/early 1970s and in Washington, D.C. I wrote quite a lot about this time and its impact on me in my memoir “Surprised to be Standing: A Spiritual Journey” (https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=ntt_dp_epwbk_0).
When Reagan was elected in 1980, I was close to finishing graduate school, with a doctoral degree in history. My final decision to become a historian jelled after the 1971 Vietnam War protests in Washington, when I decided I wanted to learn how to do revolution right—because watching and participating in these protests didn’t resonant with me for long-term change. And…yet…a President resigned! What more could we have hoped for? As it turns out, a lot more: in retrospect, that may have been not only the highlight of those protests, but the beginning of the end…though we hardly sensed that at that moment--because we, the protestors, thought we’d won and many of us moved onto other things, while the “establishment” dug in and retrenched.
Learning the hard way, in the early 1980s, that I had a disability, well, I always knew that at some personal level but now I learned it at the social and environmental levels as well when I experienced my own personal brand of oppression, while I sought a job, any job, in my chosen field. I’ve written lots about this in both books mentioned. But, as is sometimes the case, my oppression also turned into a great opportunity, as I found myself in the midst of the disability rights movement, combining my passions for history, human rights and culture.
I’ve experienced an amazing journey in the decades since Reagan’s election. I’ve worked with and met incredible people from all the over the world. I’ve had a chance to travel and to work in fields that engage and enhance my passions. I’ve been married to a wonderful woman, who both manages to keep me grounded and encourages me to fly. I’ve had a series of painful (in the most literal physical sense) disability experiences, and managed to become healthier in my 50s than I may have been since my disability first showed up when I was five. I have a daughter, who often these days tells me how much she appreciates being dragged to disability (and other) rights meetings and events when she was younger. And we have two smart, engaging, challenging grandchildren.
I reflect today, in my mid-60s, both feeling and not feeling like an “elder.” I’m often reminded of the disability rights advocates I “grew up” with in 1980s Oklahoma. Our personalities, experiences, disabilities, cultural backgrounds, and approaches were quite different. Yet, our group stuck together, and facilitated great change. Why? Not because we were different, but because we recognized and appreciated our distinctions. And because, not being perfect, during those times we didn’t appreciate each other so much we were still able to acknowledge the gifts each of us brought to the table, or the streets, or the media, or wherever else we were able to be effective. As I write, I’m reminded of a question I often got in those days, which was something like how can someone become an effective advocate. My answer might have included strategy suggestions, but in the end it was always something like figuring our “whatever works.” This is why I have always been an ADAPT (http://www.adapt.org/), supporter; as a group ADAPT does know how to do revolution right.
I am happy many people are still taking it to the streets, but for reasons that are not only physical, I don’t see that as the best role for myself these days. So, what is? Well, I’ve re-committed to my own writing, and have several works in various stages, from beginning to revising to finally figuring out (I think) a way to approach a book I’ve been wanting to write for many years now, but which never felt quite right.
A few years ago, a colleague asked me what drove my work, what was my overall goal. Although I didn’t answer her well the moment she asked (I’m a writer, I like revision:), later I realized the answer was pretty simple. The mission of the Institute on Disability Culture (http://www .instituteondisabilityculture.org/), which Lil and I founded in the early 1990s, still fits all I want to do. It’s quite simple: “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.” This vision absolutely sustains me because it, after all these years, still describes what I want to do.
In addition, to writing, I’ve also been sustained by music, as I write, Johnny Crescendo (https://www.facebook.com/JohnnyCrescendo), is singing about dance and romance—fitting one of my favorite quotes: “If I can’t dance, I don’t want to be part of your revolution.” My friends, many of whom I’ve met in person, and many of whom I haven’t--thanks to the wonder of social media, not only sustain and encourage me, but give me hope because of all the amazing activities they are involved in and producing, including books, music, movies, dance, videos, performance, and innovative ways of approaching the world. People of all ages are doing all of these activities, but I am especially hopeful because of the plethora of younger folks who are challenging and protesting the currency of the times. As a grandfather, this gives me hope for the world our grandchildren will see.
What else sustains me? I guess it’s what always has: learning. For someone else, it will be different. But I love to learn, more than to teach. Yet, the two do go hand in hand and as I move forward in 2017, I plan to continue to do both—in ways that I hope will help to sustain not only myself, but others as well, because the most practical advice I can offer anyone is to live your own truth, to be willing to share it but also to be willing—maybe even eager—to embrace learning about someone else’s truth, because the best way to sustain each other is to support one another—and if someone else’s truth rubs us roughly or even more, causes us harm, we must demonstrate, through our truths, why that needs to change.
In the early 1990s I wrote the poem “Tell Your Story ” (http://www.instituteondisabilityculture.org/examples-of-our-disability-culture-3-of-steves-poems.html). Thanks to communication advances we are able to tell and learn about each other’s stories at a rate never before possible. That’s why I’m so excited about projects like the Disability Visibility Project (https://disabilityvisibilityproject.com/), and Krip Hop Nation (http://kriphopnation.com/) which both share stories, and encourage people all around the world to find and share the experiences of their lives.
            As I wrote in “Tell Your Story:”
The lessons are in the telling
they provide a framework and a dwelling.
We all have so many stories to bear
Cry, laugh, sing, and despair;
how will our children learn and compare
if we're too timid to dare
to raise the flare
share that we care.

Tell your story
Sing your tale
Tell our story
Shout our glory!

We may have to do this over and over and over again—as people have been doing not only for generations, but for thousands of millennia, reminding us that while this may be a chaotic, challenging, even life-threatening time, it is also, in the annals of time, brief.

2 Comments 20 Years On: Pride, Power, and Disability Culture 7/8/2016
2 Comments

20 Years On: Pride, Power, and Disability Culture
by Steven E. Brown
© Institute on Disability Culture, 2016
All Rights Reserved

            It hit me a week or so ago. Alice Wong, creator of the Disability Visibility Project published a blog post about the movie "Finding Dory" and included the definition I wrote about disability culture in 1996: 20 years ago!
Where does the time go? (First, I cannot possibly be old enough to have written anything 20 years ago, can I? Why, yes, grandpa, you can—ok enough of that…)
            Mainstream Magazine: Magazine of the Able-Disabled  published my 1996 article, “We Are Who We Are…So Who Are We?” At that time, when the entire concept of disability culture was steeped in controversy I wrote about who makes definitions:

“The debate about definitions is not a debate primarily about the literal meaning of a word. It's a debate about power. Who has the power to create and apply definitions? In this specific case, who has the power to create and apply definitions of culture? For the most part, the people who have claimed and proclaimed that power have been academicians in the fields of anthropology, psychology, history, sociology, and other so-called social sciences…. In any case, the motivation for claiming expertise is power. The power to name, the power to define, the power to proclaim, the power to  place people into a context, an order which fits the vision of the person doing the naming, claiming, and proclaiming….This makes the debate, the controversy over definition a fight over who has the power of naming, claiming, and proclaiming a disability culture. I believe I have this right for myself. I am unwilling to give it to anyone else. I have the power.”

The article concluded with the definition I created and a challenge:

“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.”

You now have the choice to accept, reject, or refine this definition. The power is yours - if you take it.”(Brown, 1996).

About the same time I was writing, the late, great Cheryl Marie Wade wrote and performed Disability Culture Rap which is now available on YouTube. And Carol Gill (the first person I read who discussed Disability Culture) wrote a 1995 article in Disability Studies Quarterly, titled, A Psychological View of Disability Culture (ignore title at link-it’s this article).
In 1996, we were at the beginning stages of understanding the power of the Internet, but we were hardly there. That’s why in the mid-1990s, the Institute on Disability Culture distributed 2 print catalogs called “The Next Renaissance: A catalog of disability art, culture & collectibles,” which included artists (of all kinds) who were producing disability culture. This ranged from the books of Lorenzo Milam to the music of Jeff Moyer to local (in Las Cruces, NM, where we lived at the time), swag such as dragons with disabilities to many other items. The catalog only lasted the 2 issues because by then the Internet was here and there was no longer a need for a print catalog of the type we were doing.
One reason we started the “Next Renaissance” catalog was because in the 1990s the concept of disability culture was controversial. An article about this (one I still use in my courses) was anonymously written for Kids as Self Advocates by Naomi Ortiz with the title, What is Disability Culture? As Naomi wrote in 2005, “Not all people agree that people with disabilities have a culture. However, there are thousands of disability rights groups, books and materials that explain we do.”
Over the years others have created their own definitions. And, of course, there is the now ubiquitous social media to explore anyone’s definitions. Using the search term “disability culture” on Google on June 29, 2016 returned 79,200 hits and on Yahoo, 131,000 returns.
Disability culture is now even found in the halls of academia. As one example, Petra Kuppers published Studying Disability Arts and Culture: An Introduction in 2014. Petra is also the force behind the Olimpias artists collective and performance research series focusing on “art/life, cross-genre participatory practices, arts for social change and disability culture work.”
            On Facebook, there are several groups using the theme of Disability Culture, including, but hardly limited to “Disability Community: Pride and Culture,” and “Tangled Art + Disability.”
            There are more bloggers than I can count, but one way to access many blogs is to follow Andrew Pulrang’s “Disability Thinking,” where every other week he opens Disability Blogger Linkup.
            Books are coming through at an amazing rate. To point out just one place to find some for a younger audience, head to Disability in Kidlit.
            Intersectionality is a word I didn’t know in 1996, but just as I’m thrilled that so many young folks are writing about disability (many known as Generation ADAers), I’m as excited to see the expansion of Disability Culture beyond older white guys (like me). And I’d be remiss if I didn’t point out Krip-Hop Nation: It's More than Music, one of my favorite sites and again information I use in teaching.
            As I’m sure is obvious, the difference between 1996, when some of us fought to establish that a Disability Culture existed and how Disability Culture is perceived today is phenomenal. So one last note:
            A disability culture conference scheduled for early September 2016, in Taiwan, is using “We Are Who We Are,” as the conference title. This is one of many indications of how times have changed.
Leading me to ponder (perhaps for future writing): how have times changed—and how haven’t they?

Steve’s books that relate to this blog are:

Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride; Surprised to be Standing: A Spiritual Journey; and Ed Roberts: Wheelchair Genius.

See Steve’s Amazon Page for more.

2 Comments The Story Behind the Biography: How “Wheelchair Genius” Came to Be6/7/2016
2 Comments

The Story Behind the Biography: How “Wheelchair Genius” Came to Be
by
Steven E. Brown
June 7, 2016
© Institute on Disability Culture, All Rights Reserved

About a year ago, the Institute on Disability Culture published Ed Roberts: Wheelchair Genius, a middle grade biography. In the past week, an email correspondent asked me what it was like to write a book for a younger audience. My first response was it was a labor of love. But the more I thought about it, it felt like a longer tale. So, here’s at least some of the rest of the story….
https://wid.org/ Twenty-six years ago I moved from Oklahoma to California to work at the World Institute on Disability (WID: https://wid.org/). At the time, Ed Roberts was the WID President and while I had shaken his hand once or twice, I didn’t know him. One of the many perks of working at WID was getting to know Ed and many in his circle, including his mother Zona (96 and still going). I also met Lil at WID, and not long thereafter we moved to southern New Mexico, where we began the Institute on Disability Culture. In 1995, Ed suddenly passed away. His death was part of a series of people I knew who were then leaving the planet. I thought we had better write about these folks before they were forgotten and I proposed to do so with what was then called the National Institute on Disability Rehabilitation and Research (now NIDILRR…http://www.acl.gov/Programs/NIDILRR/About/About.aspx ).
NIDRR had one-year fellowships, one of which had enabled me to research and write about disability culture in the early 1990s (Investigating a Culture of Disability: Final Report… https://www.academia.edu/6421438/Investigating_a_Culture_of_Disability_Final_Report).
   I got another one-year fellowship to pursue a biography of Ed. Unfortunately, I knew the project would take more than one year and I didn’t find more money. So with the information I had (including many hours of interviews with Zona), I published “Zona and Ed Roberts: Twentieth Century Pioneers” in a 2000 Disability Studies Quarterly issue, later re-published in my 2003 book Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (http://www.amazon.com/Movie-Stars-Sensuous-Scars-Disability/dp/0595288936).
In New Mexico, I also became involved in working with the public schools as a poet and writer. In one of those gigs, I spent a week teaching students about Ed and having them write about him. It was a great success and gave me the idea to do a shorter biography about Ed geared for younger students. Then I contacted a number of publishers to see if they might have interest in the book. I was mostly ignored, but those few who responded did not foresee an audience. So I put out the book on CD and promoted it a bit primarily via email. There it stayed for many years, including the years after we moved from New Mexico to Hawaii in 2002.
When I retired from the Center on Disability Studies in 2014 and we moved back to the California Bay Area, I began to think again about this book on Ed and whether to try and get it in print form. At the same time, a friend I reconnected with at a conference asked me about the status of the book and suggested that 2015 would be a great year to get this book out, as part of the 25th anniversary celebration of the ADA. And, I added, the 20th anniversary of Ed’s death.
I thought I could get a book version out fairly quickly, but I also wanted some help in making it look more professional and wondered if my son-in-law, who’s a graphic designer, would be interested in helping. He was. So not long after, I sent him an edited version of the book, which I thought was close to a final version.
How wrong I was! We ended up doing about 20 versions of the book!
Some editing was minor, misspelled words or typos (including in the 1st published version, which didn’t last long). More significant was when I learned a photo I’d been using for years had been mislabeled (I believe I found it that way and I’m sticking to that story…). Then followed a search for a photo that would better represent what I wanted to say and was accurate. I had one in mind but the photographer was reluctant to have it in an online edition. I finally found another photo, which, after receiving permission to use, is now in the book.
I was also having some interesting and surprising conversations with folks about Ed’s role as a Rolling Quad (or not). That led me to research in the wonderful University of California at Berkeley Bancroft Library “Disability Rights and Independent Living Movement” online collection of primary sources, including many oral interviews with folks who knew, lived and worked with Ed in the 1960s and beyond (http://vm136.lib.berkeley.edu/BANC/collections/drilm/)
I learned that despite an ongoing debate about whether Ed was actually a “Rolling Quad,” which was mostly about timelines, that indeed he was, according to an interview with one of his contemporaries. I also learned how much more there is to learn, and continue to read through this resource.
Two people who knew Ed well, his mother, Zona, and Joan Leon, who worked with Ed for many years, also read the revised manuscript. They both suggested important changes and corrections. Then, about a year ago we published the book. As often happens, life moved quickly and the combination of the mislabeled photo and other things led to a lack of my typical promotion for the book.
But another year is here, we are coming up on the 26th anniversary of the signing of the Americans with Disabilities and it seems like a great time to remind folks of what I believe is an important biography of a disability rights pioneer for a crucial audience—young folks.
Those who may be curious about the book, Ed, and why the specific subtitle, I hope you’ll read the book:) It’s most easily available from online booksellers.

END

2 Comments All is not quiet...5/27/2016
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The Manifesto has been silent of late, for various reasons, including travel, injuries, teaching, and more. Writing will be forthcoming on some of these in due time. In the meantime, I continue to be thrilled with the advent and work of many young (and some less young) advocates. One of the individuals I've gotten to meet (virtually) over the past months is Vilissa Thompson, founder of Ramp Your Voice! Vilissa has been churning the waters lately and producing fascinating blogs and advocacy. I urge you to check some of it out. Vilissa's most recent blog, "#DisabilityTooWhite: Making the "Good Trouble" in Advocacy is at the page below:

http://rampyourvoice.com/2016/05/26/disabilitytoowhite-making-good-trouble-advocacy/

0 Comments Select Thoughts about Pride and Oppression 10/4/2015
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Select Thoughts about Pride and Oppression
by
Steven E. Brown
Co-Founder, Institute on Disability Culture
http://www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, Oct. 4, 2015

Part 1

A few weeks from now I have a birthday. A few weeks ago I had a scary health experience, ending up for a few hours in the Emergency Room. I’ve been making the rounds of quite a few medical appointments since then. This morning I read that one of my former colleagues is in Hospice. She’s been battling cancer for many years and has done some amazing healing work in this process.

I’ve been thinking for some time—years--about how I can combine my passion for healing work with my passion for Disability Culture. I’ve addressed how I arrived at this path, most clearly articulated so far in Surprised to be Standing: A Spiritual Journey, and I hope to continue moving forward with this topic.

Part 2

A couple of weeks ago, Alice Wong of the Disability Visibility Project, in concert with the National Council on Disability, conducted an enlightening Twitter chat on emergency management preparation. We know this is different for individuals with disabilities than others for numerous reasons, including simple logistics. Three examples (from many that could be listed): 1. Many of us cannot bound down-or up-stairs; 2. Consistently get the medications we may need; or 3. Have any way to get far from disasters without the ability to use accessible transportation. A list could go on and on...

My piles of reading are increasing, even as I move through them. I recently had the pleasure of reading Eli Clare’s just re-published, Exile and Pride: Disability, Queerness, and Liberation. In it, he wrote:

“Pride works in direct opposition to internalized oppression. The latter provides fertile ground for shame, denial, self-hatred, and fear. The former encourages anger, strength, and joy. To transform self-hatred into pride is a fundamental act of resistance” (p. 109).

Oppression is intertwined in the way disaster preparation has historically failed to include individuals with disabilities. Hopefully, this is in the process of changing as indicated by the above Twitter chat, but there is still a long way to go, as also narrated in this chat. Examples of pride will help both emergency managers and us--people with disabilities and our families and allies--to understand we need to be included in these conversations, plans, and activities, such as preparation drills.

Part 3

Some other examples of disability pride are below:

While I’m no longer a co-chair of the “Chronic Disease and Disability” section of the Western Social Science Association (WSSA), the pre-cursor of the Society for Disability Studies, I am happy to pass along information about the 2016 conference, which can be found at: http://www.wssaweb.com/sections.html. In the past few years, the WSSA has been extremely accommodating for those who present via Skype and I encourage those who can do this to take advantage of the opportunity. Abstracts are due Dec. 1, 2015.

I am continuing to Chair the Disability Studies topic area for the 2016 Pacific Rim International Conference on Disability and Diversity, which is entitled, Disability Studies: Exploring the Margins from the Center and the Center from the Margins. Proposals are due Dec. 17, 2015. The conference will be held April 25-26, 2016 in Honolulu. There are many other great topic areas as well and everything about the conference is posted at: www.pacrim.hawaii.edu.

I conclude with notes of two of my recent publications: 1). A biography of Ed Roberts aimed at fifth and sixth graders, Ed Roberts: Wheelchair Genius and 2). An article, "Disability Culture and the ADA", in Disability Studies Quarterly, which continues my own contributions to celebrating the 25th anniversary year of the signing of the Americans with Disabilities Act and to continuing #PromotingDisabilityPride.

Comments always welcome.

1 Comment My Top 25 ADA, and other Disability Pride, Moments 7/26/2015
1 Comment

My Top 25 ADA, and other Disability Pride, Moments
Steven E. Brown
Co-Founder, Institute on Disability Culture
http://www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, July 26, 2015

Today is the 25th anniversary of the historic signing of the Americans with Disabilities Act. On this day in 1990, the first President Bush declared, “Let the shameful wall of exclusion finally come tumbling down” (http://www.eeoc.gov/eeoc/history/35th/videos/ada_signing_text.html).

As most folks reading this undoubtedly know we still have a lot of walls that need to crumble. But we also need to celebrate what we have achieved. This is in no way meant to diminish the continued struggles ahead, demonstrated daily in a lack of employment, education, accessibility, transportation, personal assistance, housing, and so much more, such as the horrifying tension and killings that continue to take our brothers and sisters at an alarming rate, which magnify each day.

Most days, I’m working in some way to alleviate all of the above. But today I want to celebrate. And so, I share some personal moments, some directly related to ADA, some not, but all of which I believe, have been supported by the passage and existence of this historic law:

1.     On the day the ADA was signed in Washington, D.C., I had been invited to be there, but I chose to honor a previous commitment. I still wonder if that was the right decision, but the thing is I believed the purpose of the ADA was to enable us to get on with our lives, and that’s what I did.

2.     Shortly after the ADA passed, my daughter was in a school play. The play had been scheduled to be held in an inaccessible venue. I met with school administrators, and armed with the ADA’s passage, convinced them to move the play to an accessible location.

3.     In preparing for a presentation in the early 1990s, I wrote what has become my signature poem, “Tell Your Story” (http://www.instituteondisabilityculture.org/examples-of-our-disability-culture-3-of-steves-poems.html).

4.     A couple of years later, I attended a Society for Disability Studies (https://www.disstudies.org/) meeting in Seattle. When I got a request to add an additional talk to the one I had prepared, I thought about both people I had known who had passed on and the AIDS quilt. I created a short list of people who had died and told a little bit about each of them. After the panel, people came up to me and asked to me add names. That led me to write the poem, “Martyrs (http://www.instituteondisabilityculture.org/martyrs-the-poem.html), which gets longer every year, many times with activists who leave us too soon.

5.     In 1993-94, I received the first federal funding, as far as I know, to conduct research on disability culture, which resulted in the publication of the monograph

6.     Investigating a Culture of Disability: Final Report, in 1994. You can find it on academia.edu and ResearchGate for free. You can also find it on Amazon, but I don’t recommend that. For some reason, they are charging $356.19, despite numerous attempts on my part to change that.

7.     After moving from California to New Mexico, my wife and partner, Lillian Gonzales Brown and I, co-founded the Institute on Disability Culture (www.instituteondisabilityculture.org), in early 1994.

8.     The mission, vision, and purpose of the Institute from the beginning to today is: “Promoting pride in the history, activities and cultural identity of individuals with disability throughout the world.” To get onto business cards, T-shirts, bumper stickers (all of which we had in the early days), we shortened this to: Promoting Disability Pride.

9.     In 1995, we published the chapbook, Pain, Plain and Fancy Rappings: Poetry from the Disability Culture, which included, “Tell Your Story,” “Martyrs,” and

10.  My poem about a 1989 March on the White House demanding passage of the ADA called “Tap-Dancing on the White House Lawn.”

11.  In the mid-to-late 1990s we had a chance to travel to other countries to present on various aspects of the disability rights movement. At a conference in Gyor, Hungary, we helped to organize, and participated in, the first disability rights demonstration in that country.

12.  Over the years I’ve been privileged to have many opportunities to work with, and write for, ILRU (Independent Living Research Utilization-www.ilru.org). In the late 1990s, I contributed a monograph called Freedom of Movement: Independent Living History and Philosophy (http://www.ilru.org/sites/default/files/freedom_of_movement.pdf). A note: the title comes from an observation made in the 1940s about who used what were called curb ramps in Kalamazoo, Michigan. An article about this, originally published in Disability Studies Quarterly (http://www.dsq-sds.org/) is re-published in my 2003 collection of essays called

13.  Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (http://www.amazon.com/Movie-Stars-Sensuous-Scars-Disability/dp/0595288936)

14.  In 2002, Lillian and I moved from New Mexico to Hawaii, where I worked in the Center on Disability Studies (www.cds.hawaii.edu). In 2003 a group of us discussed creating a new disability studies journal. In late 2003, one of those colleagues, David Pfeiffer, the person who got us to Hawaii in the first place, passed away (http://www.accessiblesociety.org/pfeifferobit.html). We determined one way to honor his legacy was to move forward with publication of the Review of Disability Studies: An International Journal (www.rds.hawaii.edu).

15.  A few years after that, in 2005, I had the honor of being the Grand Marshal and a Keynote Speaker at the 2nd Annual Disability Pride Parade, in Chicago, at the longest, ongoing, annual Disability Pride Parade (http://www.disabilityprideparade.org/), and two years after that,

16.  In 2007, I had the privilege to be in Sweden and both present on “The Pursuit of Radical Change: Perceptions and Realities of the Americans with Disabilities Act” (http://www.independentliving.org/docs7/brown20070531.html), facilitated by Adolf Ratzka, creator of the Institute on Independent Living (www.independentliving.org), and to march in a

17.  Disability Pride Parade in Stockholm on a beautiful June day.

18.  Returning to my early days, the first time I moved to California, in the early 1990s, I had the honor of facilitating and presenting on a panel with the late, great Paul Longmore, Neil Marcus and Jeannette Harvey. Just beginning to understand how I might talk about disability culture, I shared a paper called “Creating a Mythology of Disability,” which appears in in Movie Stars. Two decades later, a colleague in Hilo, Hawaii, read my book and this chapter resonated so much with her that she created a night based on this article, featuring primarily University of Hawaii at Hilo students, called “Mythology of Disability.” Yesterday, while drafting this piece, I excitedly found a recording of this night online at: http://hilo.hawaii.edu/studentaffairs/uds/mythology-of-disability.php.

19.  So for those still reading, it will probably surprise no one that I created a course at CDS, which as far as I know is unique, called “Disability History and Culture: From Homer to Hip Hop.” I first taught the class in 2012, as an undergrad course. This summer I’m teaching it for the first time as a graduate course and will be back to undergrads in the fall (http://www.cds.hawaii.edu/certificates/course-descriptions).

20.  In the past year, since I officially retired from UH (but not as I seem to have to keep saying, from life or work), I’ve been involved in, and able to promote, some ADA Legacy Project (http://adalegacy.com/) activities, including being on the periphery of the development of the

21.  America’s Disability Rights Museum on Wheels (http://www.adalegacy.com/preservation/events/americas-disability-rights-museum-wheels-official-launch). One reason this is so exciting, is that when Lil and I began the Institute we discussed what it would be like to have a traveling disability culture museum. While we didn’t do it, now others have, and I’m thrilled.

22.  Thinking about how I might continue to Promote Disability Pride, I created and began to promote #PromotingDisabilityPride on Twitter (@disculture) and elsewhere in January 2015.

23.  A few months, later, in May of this year, I traveled back to Hawaii to present on the ADA in a talk called, “Power, Pride and the Road to Freedom: What Can We Say about the Americans with Disabilities Act” (http://www.slideshare.net/SteveBrown17/power-pride-andtheroadtofreedom5102015) at the Pacific Rim International Conference on Disability and Diversity (http://www.pacrim.hawaii.edu).

24.  In the 1980s, when I lived in Oklahoma, and first began working in the disability rights movement, I met a “Soldier of Justice,” the late, great Justin Dart, Jr., with whom I got to share part of my story, when he collected discrimination diaries in all 50 states, to support the need for the passage of the ADA. A great Justin quote is: “We are not a tragic minority, we are a magnificent, triumphant majority.” Justin can be seen with his signature hat at: http://www.slideshare.net/SteveBrown17/power-pride-andtheroadtofreedom5102015.

25.  Finally, but hardly the end, I am ecstatic to be watching the incredible development, writing and activism of a group of Generation ADA advocates, some of whom I refer to in the Slideshow discussed in #23.

I had hoped #25 would be slightly different, because after many years, soon to be published will be my Middle grade biography of disability rights pioneer, Ed Roberts, called “Ed Roberts: Wheelchair Genius.” While, a few days ago, I thought it had been completed, I alas just found 2 typos , so I recommend if you’re interested, waiting until I officially announce it’s ready…

It occurs to me I’ve either used-or started to use-the words, “privilege” or “honor” a lot in this list. This is because this is exactly what this journey has been—a privilege and an honor to be in the company of many great leaders, activists, scholars, artists, and martyrs-with disabilities.

Those of us who remain have a responsibility and a legacy to live up to in seeing that the promise of the ADA someday becomes fulfilled.

1 Comment Perspectives6/9/2015
6 Comments

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

I’ve been contemplating perspectives since posting a poem I wrote in the mid-1990s called “WHERE IS…?” on Facebook over the first weekend in June. Someone commented with frustration and disbelief that there are celebrations of “legislative reform and complacency.”

So first let me say there are plenty of times I’ve been frustrated and upset with lack of progress. On days when: I have trouble getting in the shower, which is not a roll-in and which was not a choice where we live; or getting up and down from increasingly lower toilets; or know that every time I fly I will have to fight with every other male patron of any airport for accessible stalls, because they are the ones everybody wants to use—and for good reason, because they are easier to use in many ways. Why aren’t all the stalls accessible ones?

And I still tell—often—the story of my experience with employment discrimination in the early 1980s, partly because legally the same kind of experience is possible. But I’m also aware that thanks to the Americans with Disabilities Act (see http://www.ada.gov/2010_regs.htm) even if the same kind of discrimination is experienced, avenues to redress it are much more likely to be available.

And that is where perspectives come in. I learned I had what we now call a disability in the late 1950s, at the age of five. Almost nothing was known about it at that time; now so much is known that are there competing drug therapies (none of which I use, but that’s another story—see my book, Surprised to be Standing-see http://www.amazon.com/Surprised-Standing-Spiritual-Steven-Brown/dp/1456521691).

In the 1980s, when I experienced employment discrimination, I could also be discriminated against—legally—in many other areas of society, including trying to board an airplane or see a movie.

There have been many changes in my lifetime in how people with disabilities are treated. And yet, we have not arrived where I want to be. For example, I can pretty much count on any house I want to visit being inaccessible—unless someone with a disability lives there and has expended enormous efforts and money to make it accessible.

In the early 1990s, I consciously sat down to write a poem trying to express my feelings about disability culture and why it was so important to me. I wrote a poem that—over 2 decades later—I am immensely happy to have created. It’s called simply “Tell Your Story,” and to me the most important stanza has always been:

“The lessons are in the telling
they provide a framework and a dwelling.
We all have so many stories to bear
Cry, laugh, sing, and despair;
how will our children learn and compare
if we're too timid to dare
to raise the flare
share that we care.”

(Entire poem at: http://www.instituteondisabilityculture.org/examples-of-our-disability-culture-3-of-steves-poems.html)

At the time I wrote those lines my daughter was about 12 or 13. Now she has kids. And I am hopeful that someday they will understand why I needed to write those lines, how things have changed—and how they haven’t.

All of these feelings led me to share my poem, “WHERE IS…?” which both acknowledges some of our historic leaders and their achievements and continues to ask questions about what we still (and I say this in 2015, just as I did in the mid-1990s) need.

WHERE IS...?

Where is our Malcolm, I heard them say,
Over and over again, two or three years ago,
When Spike Lee and Denzel Washington made Malcolm X
come alive once more;

Where is our Malcolm, I heard them say,
Over and over again, two or three years ago,
When Spike Lee and Elijah Muhammad destroyed and martyred Malcolm once more,

Where is our Malcolm, my sisters and brothers wrote,
Over and over again, two or three years ago,
Bemoaning our missing Malcolm,
Apparently forgetting the Heroics of The Man
Led also to the Annihilation of The Man,

And apparently forgetting also,
The Incarceration, Annihilation, mostly silent martyrdom
of our brothers sisters
Across the land,

In nursing homes and out,
Supported by the morals
And the Courts
OF OUR TIMES

As we struggle

TO FEED OURSELVES
TO CLOTHE OURSELVES
TO HOUSE OURSELVES
TO MOVE OURSELVES
TO IMPROVE OURSELVES
TO SUPPORT OURSELVES
TO BE OURSELVES

Where is our Martin, I hear over and over again,
From my brothers and sisters,
Forgetting about Judy and Ed, Lex and Justin,
Marca and Denise,
Where is our Martin, I hear over and over again,
Forgetting that even Martin was not merely Martin,
He, too, was Stokely and Meredith and Eldridge and the Evers and the Panthers and
the Christians and the Muslims;
Martin was the Power,
Martin was even Malcolm,
Martin was X We all were
Some of us still are.

Where is our James Baldwin, our Richard Wright, our Ralph Ellison, our Maya Angelou, our Toni Morrison,
I ask myself over and over again,
Not remembering, often enough, Irving Kenneth Zola, Anne Finger, Lorenzo Milam, Jean Stewart, Hugh Gregory Gallagher, Kathi Wolfe, Paul Longmore, and so many other resilient voices, including, I'd like to think, myself.

When will...

We eliminate...

Where is...

From our vocabulary...

And replace it with...

We have...

We have...

WE HAVE...

WE HAVE!!!

from Steven E. Brown, Voyages: Life Journeys (Institute on Disability Culture, copyright 1996, All Rights Reserved).

6 Comments My Top 25 Disability Pride Books5/24/2015
14 Comments

My Top 25 Disabilty Pride Books
Steven E. Brown
Co-Founder, Institute on Disability Culture
www.instituteondisabilityculture.org
© All Rights Reserved, Institute on Disability Culture, May 2015

I’ve related the story many times of when, in the early 1980s, I got involved in the disability rights movement and ventured to my local library to find books about that topic. I came up with two, both by Frank Bowe. Handicapping America became one of my first favorite books about disability rights yet it does not show up on the following list. There are several reasons for this, one being I chose another one of Bowe’s books, and a second there is now so much more to choose from. Indeed, whittling this list to 25, in conjunction with the 25th Anniversary celebration of the signing of the Americans with Disabilities Act (see http://www.adalegacy.com) wasn’t easy.

Below are some criteria I used to come up with this list:

*I didn’t include two of my favorite, and most influential precursors: James Baldwin and Audre Lorde, because even though they may have discussed disability, especially Lorde in The Cancer Journals (Aunt Lute Books, 2006), it wasn’t, as far as I know, their focus. Nevertheless, both had a profound influence on my thinking and I recommend looking for their works.

*I didn’t include my own books. But I recommend them:) Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride and Surprised to be Standing: A Spiritual Journey can be most easily found at: http://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=dp_byline_cont_book_1

*In an effort to get down to 25 I only included one work by each author. However, many have numerous publications and are well worth finding.

*I only included works I’ve read. This automatically eliminated some books I understand are excellent, but if I haven’t read them (yet) I didn’t feel I could include them. I have a pile of books to read, so the list might change next time around…

*I attempted to include books about disability by authors with disabilities.

*Diverse genres are included: non-fiction, fiction, plays, poetry, with anthologies, especially for plays and poetry.

*My biases and experiences show up in a leaning towards history and disability culture and in what I realize is a U.S. based, white list. I clearly have gaps of my own to fill.

*The order of the list is alphabetical.

*Finally, lists are personal, made for discussion, and updates. With that in mind here are my, as of today, “Top 25 Disability Pride Books.”

The Books

1. Bartlett, Jennifer, Sheila Black, and Michael Northern. (Eds). (2011). Beauty is a Verb: The New Poetry of Disability. El Paso, TX: Cinco Puntos.

A poetry anthology, this is the best place I know to find a multitude of poets with disabilities—and then to look elsewhere for more of their work.

2. Bascom, Julia. (Ed.) (2010). Loud hands: Autistic people, speaking. Washington, D.C.: The Autistic Self Advocacy Network.

As the title states this is Autistics, speaking for themselves, about themselves, from a historical advocacy perspective, a communication perspective, a human rights perspective, an eye toward the present and future. Many of these essays speak to this Neurotypical.

3. Bowe, Frank. (1986). Changing The Rules. Silver Spring, MD: TJ Publishers.

An autobiographical examination of the early years of one of the United States' most influential policy advocates with a disability, particularly riveting in discussing Bowe's pre-adolescent years coping with deafness.

4. Browne, Susan E., Debra Connors, and Nanci Stern. (1985). (Eds). With the Power of Each Breath. Pittsburgh and San Francisco: Cleis Press.

A powerful anthology depicting women's views about life, disability, anger, activism, belonging, and many other topics.

5. Charlton, James I. (1998). Nothing About Us Without Us: Disability Oppression And Empowerment. Berkeley: California.

This is an exciting book because it’s the first American book to attempt to synthesize the development of the disability rights movement, both domestically and internationally, and to put forward an agenda of what has been progressive and regressive about these developments.

6. Claggett, Jr., Charles E. with Richard H. Weiss. (2014). Max Starkloff and the Fight for Disability Rights. St. Louis: Missouri History Museum.

The first full-length biography I know of about one of the leaders of the independent
living, disability rights movement of the 1970s and beyond. Starkloff and his wife Colleen founded first Paraquad, the St. Louis independent living center, then the Starkloff Disability Institute, focused on increasing employment of individuals with disabilities and Universal Design.

7. Ferguson, Philip M. (1994). Abandoned To Their Fate: Social Policy And Practice Toward Severely Retarded People In America, 1820-1920. Philadelphia: Temple.

An analysis of why institutions for people with what we today call intellectual disabilities assumed premier significance in the American imagination, (even though most individuals with intellectual disabilities didn’t reside in them), resulting from the need for institutional administrators to promote their own welfare, both economically and professionally.

8. Finger, Anne. (1990). Past Due: A Story Of Disability, Pregnancy, And Birth. Seattle: Seal.

A compelling writer recounting her discovery of her pregnancy, how it impacted her perception of herself as a woman with a disability and then discovering anew life as the mother of a child with a disability.

9. Gallagher, Hugh Gregory. (1990). By Trust Betrayed: Patients, Physicians And The License To Kill In The Third Reich. New York: Henry Holt.

The story of the Holocaust commencing with the genocide of people with disabilities is terrifying enough, but what sticks with me is the post-Nazi era (that is, now) of former Nazi physicians, among others, continuing to promote the theoretical foundations that led to that genocide and the pervasive, ongoing practice of "assisted suicide" of people with disabilities around the world.

10. Guter, Bob and John R. Killacky. (Eds) (2004). Queer Crips: Disabled Gay Men and their Stories (Binghamton, NY: Harrington Park, 2004).

This book includes stories from people trying to find their place in the world as…something. In this case, it’s gay (mostly) men (mostly) trying to figure out how to combine their sexuality and disability identities.

11.Haller, Beth. A. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Advocado Press.

This consists of 10 essays, most previously published elsewhere, all updated. Haller, a newspaper journalist, who has become a professor of media, and a proficient blogger of media issues related to disability, approaches her subjects from a disability rights and disability studies viewpoint. While Haller clearly empathizes with the disability rights movement and is clear in her writing about her position, she is also able to provide a well-nuanced, balanced approach to each of these issues/essays.

12. Hevey, David. (1992). The Creatures Time Forgot: Photography and Disability Imagery. London: Routledge.

How photographs can be used to both oppress and liberate and the best work describing the telethon mentality at this point in time and its deleterious effects on disabled people

13. Irvin, Cass. (2004). Home Bound: Growing Up with a Disability in America (Philadelphia: Temple, 2004).

I couldn’t put this book down. Every time I tried to stop and do something else, I felt it calling to me. It’s a fascinating description not only of growing up with a disability in America in the 1940s, 50s and 60s, but also of growing up in the South.

14. Johnson, Harriet McBryde (2005). Too Late to Die Young: Nearly True Tales from a Life. New York: Picador.

Johnson, who at the time of this publication, may well have been the best-known activist in the country to the mainstream public because of her articles in The New York Times Magazine. The first of those articles, “Unspeakable Conversations,” about her fascinating interactions with philosopher, and proponent of killing babies with disabilities, Peter Singer (still in the news) is Chapter 9 of 11 in this book. Just as fascinating is the following chapter, “Art Object,” which is a narrative of how the pictures accompanying the preceding chapter came to exist.

15. Kuppers, Petra. (2014). Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan.

Described by Kuppers as a “study guide,” this book is full of snippets (mostly) of diverse artists and scholars talking and writing about disability art and culture; and of numerous exercises designed to facilitate (primarily) classroom students to explore and understand the topic.

16. Lewis, Victoria. Ann. (Ed.). (2006). Beyond Victims and Villains: Contemporary Plays by Disabled Playwrights. New York: Theatre Communications Group.

Activist, actor, playwright, and scholar, Victoria Ann Lewis has assembled 7 plays of varying lengths, dramatic styles, and subjects, though all are held together by the common theme of disability. From a focus on historical perspectives to coming to terms with a newly acquired disability to what it is like to be dependent on personal assistance, each of these plays focuses on some aspect of the disability experience.

17. Linton, Simi. (1998). Claiming Disability: Knowledge And Identity. New York: New York University.

A compelling case for why disability studies must exist in universities and how traditional analyses of disability have done everyone a disservice. A must book for anyone in any kind of disability or diverse studies teaching situation.

18. Longmore, Paul K. (2003). Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple.

This is the book I wish had been available when I started reading about disability history in the United States. Longmore does a wonderful job of weaving personal experience and academic investigation in elegant prose. From his first essay, an introduction to the first edition of Disability Rights Advocates’ Disability Watch, in which Longmore explains why there is a need to observe—and change—disability policy to his culminating essay, why he did burn his book, there is a wealth of U.S. social history, disability history, and plain good history.

19. McKay, George. (2013). Shakin’ All Over: Popular Music and Disability. Ann Arbor: Michigan.

A wide-ranging exploration of popular music and its relation to disability with a focus on artists from Cockney Rebel and Ian Dury to Neil Young and Stevie Wonder, with many others in between, including many I had never heard of and others for whom I previously didn’t understand their disability connection, including Young and Joni Mitchell.

20. Nielsen, K. E. (2012). A disability history of the United States. Boston. Beacon.

The first, and so far, only book on U.S. disability history, Neilsen explores this history from the perspectives of Native Americans, blacks, and others and how all have contributed to the evolution of American disability history.

21. Shaw, Barrett. (Ed.). (1994). The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of the Disability Rag. Louisville, KY: Advocado Press.

Much of the discussion about disability rights and culture in the 1980s occurred in the pages of the Rag. This is a compilation of 47 articles and poems.

22. Stewart, Jean (1989). The Body's Memory. New York: St. Martin's Press.

The first novel that captures the spirit and reality of the disability rights movement as a young woman comes to terms with cancer and its aftermath.

23. Wood, Caitlin. (Ed). (2014). Criptiques. San Bernardino, CA: May Day Publishing.

An anthology of essays, featuring a variety of disability scholars, and as described on the back cover, “for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.”

24. Wood, Patricia. Lottery. (2007). New York: Putnam.

A novel about a young man who is not as intellectually fast as those around him, but who might be a lot more appealing, and whose life changes dramatically when he wins the Washington state lottery.

25. Zola, Irving Kenneth, Missing Pieces: A Chronicle Of Living With A Disability (Philadelphia: Temple, 1982).

This spellbinding account of time spent in Het Dorp, a housing cooperative in the Netherlands, is Zola's coming out as an activist with a disability and a member of the community of people with disabilities.

END

14 Comments Why Manifesto?3/29/2015
7 Comments

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

When this blog began at the beginning of 2015, I just called it the Institute on Disability Culture Blog. Of course, there are multitudes of blogs these days and that name didn’t distinguish it at all. After the most recent blog entry a friend made a comment that suggested a title I liked. But when I looked it up others were using it. Then it hit me (us I should say, since all discussions involved Lillian, Co-Founder and President of the Institute—just not a writer): we already had a great name-the Manifesto.

            Some of you may recall the Manifesto began in the late 1990s. It began when I got angry about something and used the best outlet I had at the time to vent my frustration, emailing a bunch of friends and colleagues. I got a number of positive responses, including some who urged me to keep writing. I did. For a period of years, from the late 1990s to the early 2000s, I put out a Manifesto about once a month.

            Those Manifestos included an editorial, comments received in relation to previous Manifestos, resources to share, and announcements. It was an early version, in some fashion I suppose, of many current online newsletters.

            I still use one of those editorials, “Bathrooms on My Mind,” in my online class (see information on the Summer grad course at: http://www.cds.hawaii.edu/news/03232015/cds-offers-special-topics-course-disability-history-and-culture).

Much to my surprise it is still possible, though not easy, to search through these old Manifestos. The first one (found at: http://old.dimenet.com/disculture/archive.php?mode=A&id=9;&sort=D), was distributed electronically in March 1999. It included this definition of a manifesto: “a written statement publicly declaring issues, views or motives of its issuer--Webster.”

I also wrote the statement below as one of the reasons I began the Manifesto:

“I recently pitched a column idea to an editor of a national disability magazine. I was told that one reason not accepting the column was that it was too "political." This is the magazine's prerogative. But, if we have learned anything from previous movements, especially women's rights, it is that the personal is political and the political is personal.

In the early 2000s, with a lot of writing, and a bit of time on my hands, I put out a number of monographs. One was a collection of those editorials, called “Celebrating Passion, Relentless, & Vision: The Manifesto Editorials,” currently listing on Amazon for the ridiculous price of $349.01 (and yes, I’ve tried to change this—clearly unsuccessfully).

As I got busier with my life in Hawaii and at the Center on Disability Studies, the Manifestos tailed off and the last one came out in December 2006, with the theme of a word I thought I’d created called “internetworking” (http://old.dimenet.com/disculture/archive.php?mode=A&id=101;&sort=D).

My writing has continued in other ways since that last editorial, with a primary focus on academic publications and presentations. I also wrote a book, Surprised to be Standing: A Spiritual Journey (available for much less ridiculous prices on Amazon (http://www.amazon.com/Surprised-be-Standing-Spiritual-Journey/dp/1456521691/ref=sr_1_1?s=books&ie=UTF8&qid=1427646228&sr=1-1&keywords=Steven+E.+Brown) and Smashwords (https://www.smashwords.com/books/view/108864).

In that book is another reason why we chose to continue to use Manifesto for this blog. Manifesting has been a conscious theme in my life, at least since meeting Lil. In Surprised I talk about one spectacular manifestation that occurred with finding a spectacular rock I still look at every day (for those who want to know: a combination of quartz, smoky quartz, and citrine), a wedding that led to a trip to Alaska for a month, and support from friends and colleagues that made that possible. In truth, the theme of the entire book is about manifesting, so the Manifesto not only fits my activist life, but my spiritual one as well—in other words, my life.

And that—not quite in a nutshell—is why this blog is now called the Manifesto.

Addendum: There are many incredible disability-themed blogs out in the world now, some of which are listed in the Institute Links & Resources page at: http://www.instituteondisabilityculture.org/links--resources.html

I want to point out one: Andrew Pulrang’s Disability Thinking: http://disabilitythinking.blogspot.com/
For anyone also writing disability-related blogs (as well as those who like reading them), Andrew periodically hosts a Disability Blogger Link-Up (http://disabilitythinking.blogspot.com/2015/03/disability-blogger-link-up_20.html) where blog writers can post recent entries. The next one begins April 3 2015.

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

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

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

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.

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