Martyrs: A Poem
Background:
In 1993, while working at the World Institute on Disability, then headquartered, in Oakland, CA, I prepared to do a panel presentation on Disability Culture at the annual Society for Disability Studies Conference. It was in Seattle that year, where I’d never been and that always excited me — going to a new place, especially one reputed to have (and did) great, wheelchair accessible public transportation.
Shortly before leaving, I was asked to be on another panel as well. What would I do? I thought about the AIDS Quilt and a number of people with disabilities I knew who’d recently died. I didn’t know about anything like the AIDS Quilt in the disability movement, so I decided to write a short list of people I’d known in Oklahoma who’d died. I’d lived and worked in the disability rights movement in Oklahoma, for most of the 1980s.
I chose those folks because I wanted them to be remembered and I doubted most people at this conference would know the people I talked about. The list was brief — maybe half a dozen or so people. I don’t recall if I called them martyrs that day, but I do remember that when the panel ended, several people came up to me with names they wanted me to add to my list. So began the idea to write the poem that became “Martyrs.”
Many friends, colleagues and others in the disability rights worlds have transitioned since I first had the idea for “Martyrs.” In the early days of the poem, I read it aloud a couple of times and heard gasps in the audience from people who learned for the first time about someone who’d passed.
Keeping up with the Poem:
Since I started the poem in 1993, I’ve been maintaining it for 20 years. I began with a focus on people I knew personally and then added people I thought had a huge impact on disability issues. I mostly stuck to that criteria during this time. A few years after beginning this poem, the internet and social media exploded with possibilities to share information and many have, so others have also been recording in various ways, people who have passed.
In 20 years, several good friends have passed. One of them was the first person I met with the same disability I have. In those pre-internet days, in the 1980s, I met him in a hospital in Boston, where I was having back surgery — even though I lived in Oklahoma — and he too was having surgery. (See “I Was Born (in a Hospital Bed) — When I was Thirty-One Years Old)
Many others have transitioned during the past 20 years. This spring, though, it’s become overwhelming — my boss at WID and friend, Judy Heumann, internationally known disability rights advocate, sometimes called the “mother” of disability rights passed.
Not long after that, my friend Neil Jacobson, passed. Both are featured in the movie, Crip Camp. A few days later, Laura Rauscher passed. Though I didn’t know her well, she was a friend and from reading tributes about her on Facebook, many considered her as coveted a mentor and friend as Judy and Neil. It was at that time I realized it had become time to end my journey with the poem, “Martyrs.” Maybe someone else will take it over, maybe not. I will keep it alive as it is. But I’ve finished with adding names.
As I say in the poem, “I don’t believe an ending will ever come.” And it won’t. But I will conclude my keeping of this list and turn my focus elsewhere.
MARTYRS-the Poem:
Steven E. Brown
©1994–2023
All Rights Reserved
Institute on Disability Culture
Martyrs:
The following have drawn their last breath,
They’ve been courted by death
Many gave their lives to the cause
Their passing should give us pause
Many gave all their hearts had to give
So the rest of us might live
II.
Joe Amoroso…
Nan Arbuckle…
Keith Armstrong…
Adrienne Asch…
Mike Auberger…
Mario Avila…
Maria Barile…
Drew Batavia…
Sandra Beasley…
Bill Bean…
Barb Bechdol…
Carol Thuringer Berger…
Shelley Bergum…
Sheldon Berrol…
Paul Bilzi…
Larry Bishop…
danny Blake…
Wade Blank…
Elizabeth Boggs…
Doris Brennan…
Marca Bristo…
Lisa Bufano…
Deidre Davis Butler…
Phil Calkins…
John Callahan…
Lindsey Carter…
Tom Carter…
Judi Chamberlin…
Roger Chambers…
John Chappell…
Phil Chavez…
Ray Cheever…
Paul Church…
John Clogston…
Mike Collins…
Kitty Cone…
Patrick Wm Connally
Tim Cook…
Barry Corbet…
Deborah Cunningham…
HolLynn D’Lil
Susan Daniels…
Justin Dart…
Gerald Davis…
Speed Davis…
Dave De Weerd…
Patti Deak…
Maggie Dee Dowling…
Tanis Doe…
Phil Draper…
Rick Douglas…
Yvonne Duffy…
Carl Durocher…
Gunnar & Rosemary Dybwad…
Cheryl Elliott…
Ethan Ellis…
Henry Enns…
III.
The list is not complete
There will never be such a feat;
The deeds are not done
Many more tales have yet to be sung:
My list, my friends, my foes, the lines grow longer every day,
Leaving me breathless, with much too little to say,
Tribute to those whose voices we no longer hear,
Tribute to those whose vision we still are privileged to see,
Tribute to those whose dreams are yet to be;
Death be not too loud,
Life’s accomplishments demand be proud:
IV.
Pat Fallin…
Joe Fallin…
Fred Fay…
Barbara Waxman Fiduccia…
Pat Figueroa
Vic Finkelstein…
Eunice Fiorito…
Lockhart Follin-Mace…
Duane French…
Adina Frieden…
Hugh Gregory Gallagher…
Gerald Garner…
Mark Goffeney…
Marilyn Golden…
Linda Gonzales…
David Gray…
Deanna Gregorio…
Lucy Gwin…
Harlan Hahn…
Rebekah Hallford…
Madeline Harcourt…
Gary Harmon…
Lynn Hart…
Paul Hearne…
Chester Helms…
Laura Hershey…
John Hessler…
Judy Heumann….
Dave Hingsburger…
Henry Holden…
Anne Marie Hopkins…
Cristina Hopkins…
Diane Hugaert…
Lydia Igitol…
Neil Jacobson…
Dan Johnson…
Harriet McBryde Johnson…
Jay Johnson…
Paul Kahn…
Matthew Kaopio, Jr.…
Evan Kemp…
Barbara Knowlen…
Doug Koehner…
Kalle Könkkölä…
David Landes…
Douglas Lathrop…
Gini Laurie…
Frank Lozano…
Tom Lee…
Bob Liston…
Paul Longmore…
William Loughborough…
Carrie Ann Lucas…
Josh Lukin…
Dara McLaughlin…
Durward McDaniel…
Barbara McKee…
Kirk MacGugan…
Ron Mace…
James Magill…
Lynn Manning…
Neil Marcus…
Douglas Martin…
Robert Mauro…
Stacey Park Milbern…
Lorenzo Milam…
Paul Miller…
Sharon Mistler…
Bill Mitchell…
Marshall Mitchell…
Kaiya Montaocean…
Frank Moore…
Howard Moses…
V.
Remember, we remember, tears and laughter,
Friends and foes
Hugs in victory, surrender from those we oppose,
Remember, we remember, laughter and tears,
Cries and fears;
Remember, we remember, heroes and martyrs,
Deals and barters,
Remember, we remember, those who have gone before,
Remember, we remember, those who paved the way,
Remember, we remember, for those of us who stay,
Remember, we remember, for all our descendants who will be here one day.
Remember, we remember…
Remember, we remember…
We remember…we remember…
Remember…we remember…
Memories will stay,
It’s up to all of us,
To make sure and say,
Memories will remain to energize each day,
Memories will keep the wolves at bay,
Memories will sustain our way.
No list will ever be complete
There will never be such a feat;
The deeds are not done
Many more tales have yet to be sung:
VI.
Sharon Nelson…
Margaret (Peg) Nosek…
Tim Nugent…
Lonnie Nungesser…
Susan Nussbaum…
Mark O’Brien…
Catherine Odette…
Mary Jane Owen…
Kim Palmer…
Connie Panzarino…
Larry Paradis…
Christine Parkhurst…
Bill Peace…
Linda Pedro…
Kim Peek…
Michael Peluso…
Arthur Pepine…
Caesar Perotti…
Joakim Peter…
David Pfeiffer…
Alexander Phiri…
Mary Frances Platt…
Richard Radtke…
Scott Rains…
Laura Rauscher…
Gordon Richins…
Ed Roberts…
Britt Robillard…
Gene Rodgers…
Bob Romero…
Jason Ross…
Clive Rosser…
Helen Roth…
Phyllis Rubenfeld…
Kim Weol Soon Rupnow…
Marta Russell…
Marsha Saxton…
Marilyn Saviola…
Randy Shilts…
Tobin Siebers…
Ruth Sienkiewicz‑Mercer…
Ernest Simpson…
Bente Skansgård…
Chris Smit…
Paul Spooner…
Greg Smith…
Judith Snow…
Ian Stanton…
Max Starkloff…
Maureen Stephens…
Phil Stinebuck…
Karen Stone…
Anna Stonum…
Benjamin Stuart…
Mitch Stuart…
Roland Sykes…
Bill Tainter…
Steve Taylor…
Rob Da’ Noize Temple…
Anthony Thanasayan…
Jane Thiboutout…
Jason Uesato…
Lenny Van Pelt…
Diana Viets…
Larry Voss…
Earl Walden…
Sylvia Walker…
Paul Wellstone…
Celeste White…
Betsy Whitney…
Harold Wilke…
John Williams…
Lee Williams…
Michael Winter…
Kanalu Young…
Stella Young…
Tony Young…
Ray Zanella…
Irving Kenneth Zola…
Hale Zukas…
VII.
These tales we tell have begun,
Songs and poems and stories in all their glories
These tales we tell have begun,
I don’t believe an ending will ever come.
Steven E. Brown (Steve) lives in Arizona, where he usually delights in the sunny weather (though 110 is a bit much:). I’m a Chicago Cubs fan who spent time as a Bleacher Bum in the late 60s and early 70s. For most of my life, I’ve loved to travel and have been to 40+ states and several countries. Due to unforeseen circumstances (including but not limited to the Pandemic), my last travel was in 2018 to Chiang Mai, Thailand. I was working on a book about Disability Culture, but this has taken an unexpected turn and is likely to come out in a different format, or formats. You can find more info about me at: http://www.stevenebrown.com/what-we-mean-by-disability-culture.html
