Middle grade biography of late 20th century American disability rights pioneer and activist, Ed Roberts.
Amazon reviews:
This is a clear and concise biography of Ed Roberts, who is widely acknowledged as one of a handful of people who founded the disability rights movement in the US. The book will be very useful to any teacher (or any person) who wants to expand understanding of what "civil rights" means. Thus, it should be useful to any middle school history, health, or social studies teachers in the US as well as to people in other nations who want to understand the US rights framework and why it works for everybody. It is particularly recommended to all parents of children who have disabilities (I am one), as it explains the tremendous power Ed's mother Zona had in supporting his life. I would also recommend it as a basic text to any person studying disability in a professional capacity who wants to be not just competent but excellent in their practice (PTs, MDs, psychologists, social workers,, etc.). The book is small and easy to read but profound in its understandings. Nothing can substitute for knowing Ed, but this book will help you understand why his life changed everything for disabled people.
A must read for those empowering children with disabilities! My son is using this book for a "Great American" project at school. Ed Roberts is every bit as transforming as Dr. Martin Luther King. Hopefully schools will start educating children about disability civil rights, not just civil rights for race or gender.
Surprised to be Standing: A Spiritual Journey (ISBN-13: 978-1456521691)
Steven E. Brown, Ph.D.
In this memoir, Steven E. Brown, Ph.D., Co-Founder, Institute on Disability Culture, and retired Professor, currently Affiliate Faculty at the Center on Disability Studies, University of Hawai‘i, explores his own life of disability and healing.
$19.95, Paper
Also available in e-book formats from Smashwords at: https://www.smashwords.com/books/view/108864 ($9.99)
Available at Amazon, Barnes and Noble and other online stores
Orders can also be made by contacting:
disculture@gmail.com
Brown has published several books of essays and poetry, including Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (2003);Pain, Plain-and Fancy Rappings: Poetry from the Disability Culture (1994), and the middle grade biography, Ed Roberts: Wheelchair Genius (2015). (For more on these works, see http://www.instituteondisabilityculture.org).
What Others Say about Surprised to be Standing: A Spiritual Journey:
"Disability Culture and its discovery"
August 2, 2011
By
Michael T. Bailey (Portland, OR USA)
When author Steven Brown's ambition to be a professional historian was derailed by disability discrimination he had to make some choices. Readers may imagine themselves simply abandoning their own ambition and giving over to disability. Gaucher disease is certainly a good reason and excuse. But it is not the story of this book.
Instead we are treated to sharing questions like seems `why me?' and `what now?' and `how did this happen?' And the answers are the seminal moment of his virtual creation of the concept of a disability culture. "If this is happening to me surely it must be happening to others" lead to a whole new way of describing disability and meshing it with the desire do something extraordinary.
The exciting adventure of the mind that he describes is thrilling. It includes truly revolutionary times in Berkeley with Ed Roberts and others. His friendship with Judy Humane [Heumann]. The collaborations with Paul Longmore, Laura Hershey and others reads like a virtual who's who of the intellectual power houses that laid the foundation for the modern disability rights movement. A movement in which Brown's place is secure.
This book is a guide for the emerging genre of disability writing in which life, normalcy, desire, family, career and finding one's way is far more important than a diagnosis. There are some pretty amazing details regarding Gaucher disease and its peculiar tricks of pain and frustration. But the book is not about Gaucher disease. It is about a rather normal (if uncommonly brilliant) person coming to grips with the life they have and rather matter-of-factly getting on with it.
For anyone who loves a good story this is one. For those who are curious about a story with some unusual `challenges' this is also one. For those of us who care about the history of the disability rights movement and the acceptance of disability culture it is a tour de force of required reading. Brown does not portray himself as a pioneer or visionary. He simply writes about what has happened to him and what he did with it. It enables to reader to imagine the power of their own life.
This book has a well deserved place of honor in the expanding genre of disability history and writing. It also establishes Brown's place in the history.
More than that it exemplifies what one determined individual can accomplish by wishing only to be happy and to make a contribution uniquely their own.
There is power here. A wonderful and historic book.
Review from Review of Disability Studies: An International Journal
Janine Bertram Kemp, Zigzag, Oregon, 2012
With Surprised to be Standing, Steve Brown is turning over new ground in disability literature. Activists, academics, and advocates might do well to listen up, especially those looking to toss a little wellness or self care into their mix. Brown’s book does not point the path for others. His is a deeply personal narrative. He is a writer of integrity and solid disability rights credentials who wades into arenas that could create controversy if his views are misconstrued.
The narrative is divided into three sections: pain, healing, and liberation. The section on pain greatly details the author’s experience with Gaucher Disease (GD), which began for him at age 5. GD involved perpetual, excruciating pain and regular experiences with broken bones. Brown managed to work and gain advanced degrees when many might lie in bed and whine, “Just shoot me.” The author is affected but yet not beaten down by intense pain. His accounts are matter of fact, no-pity-please: here is how it was and here is how I dealt with it.
At one point Brown notes that for some reason, during the times of body and mind-wrenching pain, he could eat only nuts. And he writes of nuts in poetic prose that made this reader laugh out loud:
“Nuts: cashews have a lovely curve…tender, undulating. Walnuts are like a saw, striated, just enough space for the tongue to lap the salt. Almonds are best whole, yet small. Did nuts feel pain when the nutcracker pierced their tough shells? Brazil nuts are odd – sometimes the flaxy taste one wants, other times, a waxy flavor to avoid. Peanuts, last eaten….” (p. 23)
Reading through seemingly unending descriptions of pain, broken bones and the insults perpetrated by representatives of the medical profession, I wondered how much Brown’s inner poetry led to his ability to metaphorically keep dancing.
Yet he had bleak thoughts, like most of us who ride the severe pain train. He describes a particularly desolate episode during the early 1970’s when he was attending Southern Illinois University:
“My body responded in a way I had never felt before. It was my worst bone crisis. …All I could feel was pain….I cursed God. I cried. Suicide began to appeal. Not because I wanted to die, but to do something, anything to escape the pain” (p. 51).
GD weakened Brown’s body, and he began using crutches, a manual wheelchair, and then a power wheelchair. In the book’s first section, the physical aspects of GD are interwoven with matter-of-fact depictions of his life and politics as a student and early spiritual explorations. He becomes active in protesting the Vietnam War, but committed to his hero Gandhi’s principles, and drops back when groups move from non-violence to revolutionary resistance.
Noting his own early psychic abilities, Brown briefly affiliated with Quince, a practitioner who bases his mystical competence on power and fear, rather than knowledge and love. That being the one brush with “the dark side,” the book touches on a number of modalities, including channeling and A Course in Miracles that the author’s spiritual travels took him through.
The final portion of the first section “Pain” could almost be in the section on healing. It concerns Brown’s discovery of and joining with the disability rights movement, where with his wife Lillian, he founded the Institute of Disability Culture and, through work and insight, carved out a leading role for himself.
Many parts of Brown’s evolution as a disability rights leader will resonate with others, and some parts are uniquely his. “Overnight Radical,” one of the book’s chapters, tells Steve’s story of finishing graduate school without a job. He had already spent a year as a History Instructor at his university. His department chair called to say he had recommended Steve to a Tulsa-based firm to write the history of the organization. The phone interview went swimmingly, but after the in-person interview, the company representative said they had changed their mind and would not hire Brown because of his disability. They thought someone on crutches could not possibly do the job. “I became radicalized overnight into a disability rights advocate” writes Brown (p.74). Indeed it is a common story for those seeking employment in the 1970’s and 1980’s.
Brown found his way into the independent living movement in Oklahoma, and his first experiences were lessons in the need for consumer, rather than service provider, control. He was part of a group that wrested control of a Center for Independent Living from a provider group run by non-disabled personnel. He became involved in the national disability rights movement and joined people with disabilities all over the country in working for the passage of the Americans with Disabilities Act. Brown moved from Oklahoma to the World Institute on Disability in Oakland, California. He married a co-worker, Lillian Gonzales Brown, whose work as a disability rights advocate is also well known. Together they founded the Institute on Disability Culture.
In his section about healing, Brown describes moving from using crutches to a manual and then a power wheelchair. And finally, after spiritual healing experiences, Brown moves back to walking again. This is a journey that could raise eyebrows among members of the disability community. Faith healers have discounted many of us with disabilities and spiritualists have viewed cure of our disability, be it physical, cognitive, or emotional, as necessary to recreate us as whole. In our community, “cure” is a dirty word:
“This tension between what any healer – traditional or alternative – offered and our quest to live as people with disabilities, struck at the core of our beliefs. We’d worked for decades to convince society those of us with disabilities lived meaningful, productive, and proud lives despite existing in a society filled with prejudice and discrimination based on disability. A core principle that we didn’t need to change, society did, informed all our thinking. Now this man Lil and I had brought to the conference claimed we didn’t need to hang on to our disabilities if we didn’t want to. How could we merge this kind of thought with being proud of who we were as people with disabilities?” (pp. 154-155)
Brown is not talking about a spiritual cure. He is not stating that a life walking is better than a life riding and he is in no way denying the depth of disability culture and its impact on his own experience. That said, one of my few criticisms of this book is that it would benefit from more exploration of this very point as well as the controversy that engenders the need for it. Few disability rights writers or leaders have had the courage to venture into spiritual realms that many criticize as “woo woo.” Given that the author does not appear to be out to convert readers and that spirituality is a personal, individualized path, it is best to leave skepticism at the door when reading this book.
The healing journey bridges numerous geographies. Brown and Gonzales Brown lived in Las Cruces, New Mexico, traveled to Germany, and moved to Hawai‘i, where they currently reside. In Germany, they met and formed ongoing relationships with two different healers, Otto (no last name cited) and Herwig Schoen, who played key parts in Brown’s odyssey. Otto was a physical therapist and a practitioner of cranial-sacral therapy. Through Otto, Brown met a physician and his wife who used Pulsed Signal Therapy (PST) to treat pain. PST, which seems similar to an Alpha-Stim or TENS unit, uses electrical stimulation to “stimulate the body to rearrange cells to their original non-pain situations” (p. 140). Both Lillian and Steve had several treatments in Germany, which decreased pain enough to lead Brown to a watershed moment.“Lying on the table one day...I remarked, ‘I think I need to focus on healing. I’ve written and talked about pain enough’” (p. 141).
Brown met Schoen at Otto’s wedding and was introduced shortly thereafter to the very new Reconnective Therapy (RCT) that Schoen was developing. It was a life-changing modality for Brown. The therapy is based on the theory that there is a disconnect between our energetic and physical bodies that causes disease and dysfunction. Brown’s RCT experience led to a significant decrease in pain and bone breakage. It also led him to follow his inner wisdom, which kept sending him visions of himself running. Gradually, he reduced pain medication and finally slowed and stopped using a wheelchair. Over time, he became an RCT therapist.
Brown pulls together his stories in the Liberation section of the book. He uses some universal themes like internal focus and connectedness to other people and energies. The author was able to understand liberation through a quintessentially human experience: the deadline crunch. There is so much to do and so little time. Brown writes: “What does the work matter if I lose myself in the process? How can peace be made from this internal war?” (p. 191). The author stops, balances, reflects and can choose a path of love rather than fear. He sees liberation in his connections to others and the universe and usefulness in the universality of his particular story:
“While this book is my story, the patterns in it – pain, anger, accomplishment, isolation, victimization, disease, connection, healing, and others – aren’t unique to me. Mining my personal experiences is one way to channel and explore universal truths. But fascination with an individual life and becoming mired in its details is when we are most likely to neglect our connections to others, to forget to reach beyond ourselves” (p. 192).
The point is to move beyond individual experience and plum the greater universe.
Brown concludes with noting subtler energies and offering suggestions on paths that lead to them as well as one’s center. This book covers new ground and is a must read. It will prove especially fruitful for anyone who has the honesty and ability to put preconceived ideas and belief systems on hold.
"SURPRISED TO BE STANDING: A Spiritual Journey" is both reflective and eloquent. In this memoir, Steven E. Brown has delivered an honest meditation on what it means to find meaning in a broken body. Ultimately he delivers a restorative message of redemption and the hope that lies in the mind/body connection ."
Anne D. LeClaire, Author of LISTENING BELOW THE NOISE: The Transformative Power of Silence
“This is not just a book about perseverance amidst challenges-it is full of life altering-insight about the human condition and how hope propels us all.”
Patricia Wood author of Lottery
“Steve’s life is a love story through which every reader can make meaning and follow this itinerary to healing, human relationships, and the contemplative life.”
Elizabeth DePoy, Ph.D. and Stephen Gilson, Ph.D., University of Maine
“I take my hat off to Steven Brown and I applaud every painful bone in his body. Thank you for reminding us that through our own perseverance, we too can make a difference in life.”
Cynthia J. Frank, Person with Gaucher disease, Director of Development for the National Gaucher Foundation
“Your book should cross the Ocean and come to Europe. It would be translated in other languages (French, German, Albanian, Serbian, Dutch, Italian, Russian, Greek…). It is very important for the disability movement on a global level. You will change the world.”
Hiljmnijeta Apuk, Little People of Kosovo
“This book is a prime example of the rewards one can ripen by following through with a commitment to participate in his own healing no matter what it might take.”
Herwig Schoen, Founder of ReConnective Therapy
