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.