Steven E. Brown
Co-Founder, Institute on Disability Culture
© 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.