by Steven E. Brown
Institute on Disability Culture
2260 Sunrise Point Rd.
Las Cruces, New Mexico, USA 88011
This article is based on a speech written when I served as Training Director for the Research and Training Center on Public Policy in Independent Living at the World Institute on Disability funded by National Institute on Disability Rehabilitation and Research grant #H133B00006-90. The address was delivered to the Region VI Independent Living Conference in Little Rock, Arkansas on November 11, 1991.
Reprinted with permission from "Disability & Society," Biomedicine & Bioscience Journals Publisher, Taylor & Francis Limited, P.O. Box 25, Abingdon, Oxfordshire, OX14 3UE United Kingdom. WWW: www.tandf.co.uk/
"I Was Born (In a Hospital Bed)--When I was Thirty-One Years Old," is on one level an analysis of a personal experience and reaction to growing up with a disability. It is also a look at a process of integrating one person's awakening to the positive role a disability might play in someone's life with a common history of other individuals with disabilities and with the evolution of the disability rights movement in the United States from the 1970s to the twenty-first century. The article is based on a speech delivered to a five-state disability rights conference in the early 1990s.
I was born in a hospital bed when I was thirty-one years old.
It had been my home for about a week. A team of physicians attended to my disintegrating body. A combination of intravenously-dripping morphine and confining straps from the hospital bed ensured a lack of rebellious movement.
A few days previously major back surgery had been required to repair broken vertebrae. My back was now supported with Harrington rods, two steel poles on either side of my spinal column, and an infusion of cowbone to supplement my own weak and crumbling bones. I could not move my legs or my torso. The only limbs I could use were parts of my arms.
As I lay on that bed I benefitted from the luxury of unhurried contemplation. I focused on my body--which had steamrolled me into this predicament. I was tired of that body.
As I began this mental meandering I could only think about the past twenty-five years in a cloud of unbridled agony. But, then, in the time it took to inhale the scent wafting from nearby flowers, I underwent one of those sudden transformations that people often label revelations.
My body no longer loomed apart as a temple of doom, but together with heart and soul as a sanctuary of life. I began a litany: broken leg; broken hip; broken hip; broken leg; broken hip; broken vertebrae; broken vertebrae; using a full-length leg brace for a year and a half; many periods of crutch use; using a cane; sometimes using a wheelchair. Not to mention all the bone crises and down times when my joints rebelled and would allow no weight-bearing, but would instead send searing messages of mind-numbing, body-paralyzing, time-stopping pain throughout my body.
I was thirty-one years old and my body had borne more scars than most people feel in a lifetime twice as long. I thought about those heroes of my youth---stars of various sports--and the scores of times commentators bemoaned the aches and pains athletes lived and played through. I realized that my body had taken an athlete's abuse over and over again and rebounded every time.
I began to view my body differently. For a long time I had been consumed with bitterness and anger. Muscles I had admired as a child had atrophied more than I cared to acknowledge. Constant pain often rendered me sullen. Sudden, unexpected land mines of intensely debilitating pain overwhelming the constant less explosive pain caused friends to look at me in puzzlement and concern when my mood would shift without warning.
The hospital inspired rendering of this litany of breaks and bruises awakened me to another truth. My body had weathered a storm of abuse--some of which was inherent in my being and some of which I had heaped upon it in my rebellion against its limitations. Laying in that hospital bed I also saw that the thunder and lightning had alternated with periods of sunshine and calm.
I decided right then and there to be nice to my body. In essence I made a life-affirming decision. I recognized myself for who I was, with my disability and its limitations--and with my disability and its affirmations.
A funny thing happened when I chose to like my body. I also began to like myself a lot more. And to embrace life itself.
For many years I believed that death would be a welcome release. But life no longer seemed to be that unending pain. I took stock and found joy. I had a daughter I loved very much. I had friends who were family. I had a job that excited me because it was not just a means to a paycheck, but a path to a new way of life.
I was born in a hospital in Boston, Massachusetts when I was thirty-one years old--and two thousand miles away from home.
At home, the job that shattered my old worldview and ignited another way of moving through life was at the first independent living center to be funded in the state of Oklahoma. My primary responsibilities were to supervise and provide peer support and skills training. Other activities included community organizing and editing a bi-monthly newsletter.
Only a year-and-a-half earlier I had attended my first disability-related meeting.
A painful and unexplained limp first manifested itself when I was six years old. After months of visits to hometown physicians I boarded my first airplane to be diagnosed at the Mayo Clinic in Minnesota with Gaucher's Disease. At that time, in the late 1950s, this disease had been identified, but little was known about it or its consequences. (Beutler 1980) My parents were advised to do everything they could to ensure that I lived a normal, non-institutionalized life.
I never went to a special school. I never consciously did anything differently than my brother or my sister, or my peers.
Once or twice a year, when the spring and fall weather heralded a change in seasons I would experience the bone crises that laid me inert for a couple of weeks with debilitating pain and an inability to put weight on my legs.
A couple of weeks of missed school was a small price to pay to live with my family. I didn't know that then. But I know that now.
When I was fifteen I broke my hip for the first time. My dreams of athletic prowess receded. I continued to live with my family, going to school, preparing for college. The only difference was that I used crutches more often than I had previously.
But that was a small price to pay to live with my family. I didn't know that then--but I do now.
I was born in a Boston hospital when I was thirty-one years old--and had already fathered a daughter. A vibrant child who had already felt the effects of my disability because I lay in a hospital two thousand miles away from her when she was only four years old.
I was born in that faraway hospital when I was thirty-one years old--and just beginning my life's work. The very first time I could even begin to consider myself a person with a disability, ever so slightly, was when it occurred to me that I could benefit from owning a disability parking placard. Why grind my bones walking further than necessary when I could get a card and park closer? I further acknowledged a nascent perception of myself as a person with a disability, a sight more than slightly, when I would nod to this somewhat funny-looking lady who pushed the elevator buttons in the library with her cane. I began to consider myself a person with a disability, slightly more than slightly, when I began to use a cane to get around at all times and people started to ask me what was wrong. I began to consider myself a person with a disability, quite a little bit, when I began to borrow a wheelchair to get around in the mall, or the zoo, or anywhere where there was a lot of walking and standing.
I was born in that Massachusetts hospital room when I was thirty-one years old--and I remembered the student in one of my freshman history classes who had introduced me to an independent living center. I began to know, and to like, and to identify with a whole world of disability.
I learned that the big price I had paid for living in my family settings was that I didn't know there was anybody else out there like me.
I was born in a hospital in Boston, Massachusetts when I was thirty-one years old--and had been informed that I would not be hired to write a book because I used crutches.
I had completed my dissertation. I had spent six years teaching, first as a graduate, then a faculty, instructor. I had published articles in academic journals. But all the same I was told that I did not have the stamina to write a book because I used crutches.
My radicalism crystallized when I felt the full force of employment discrimination because of my disability. I fought my oppressor. But I discovered the law was on their side, not mine. I found that in Oklahoma, at that time, there was no protection for people with disabilities against employment discrimination. Today, when I tell this story people shake their heads in amazement and disgust, but assume that because of the Americans with Disabilities Act of 1990 that this kind of discrimination can no longer occur.
But it can. And it does.
My oppressor, the individual who decided I could not write a book because I used crutches, could make the same decision today. And be off the hook. Because like other anti-discrimination laws, the Americans with Disabilities Act does not apply to everyone. It does not touch, for example, employers with less than fifteen employees. (Americans with Disabilities Act of 1990)
For over a decade I have been privileged to be a participant in one of the most exciting paradigm shifts in modern times. The notion that people with disabilities are not medical or charitable objects to be fixed or pitied has evolved not only into a civil rights perspective based on socioeconomic analyses, but also into a belief that Disabled People are forming a distinct culture based on our own unique life experiences and history.
I was born in a hospital when I was thirty-one years old--and started to understand, in a way that I could not then define, that my disability had brought to me as many positive consequences as negative ones.
A few years ago a friend commented to me that losing his leg was the best thing that had ever happened to him. I looked at him in amazement and wondered what he could possibly be thinking. He attributed to his disability a desire to be more focused, to settle down (though his idea of settling down would put many another person in situations of peril) and to pave a smoother road for his life to follow.
From that conversation I developed the following generalization: people who have adjusted well to their disability all have one trait in common--somewhere along the way they realized that as many positive results as negative ones had resulted from their disabling conditions. I have made this statement so many times now to other people with disabilities that I do not expect to be contradicted. Because I never have been--not once. In a way, I guess, this statement is now a self-fulfilling prophecy. But I don't think it matters much anymore. Because enough people do agree with the statement that its truth is generally, if not universally, prevalent.
In my own life the proof of the generalization has been demonstrated in many ways. One such positive consequence of my disability is that I have been given the gift of combining my two loves--scholarly activities and human rights--into disability rights activism. And in one of those twists of irony that make tragedy into humor, I have one person more than any other to thank for my success. The person who told me that I could not write a book because I used crutches.
When I was reborn in that hospital when I was thirty-one years old I had no idea that the most important work I could do would be to become a storyteller about living with a disability. But from my own stories to the history of disability rights to the creation and work of the Institute on Disability Culture, it is the stories of our people--Disabled People, People with Disabilities--that people want to hear, want to read, want to write, want to know their role, want to know what part they have played and continue to play.
My particular retelling of the story of the birth of independent living in the United States has been requested many times by many diverse audiences. Other people tell the story as well. But we each bring to all of our stories our own unique style which we then mesh into a greater whole.
I often begin my story in thirteenth century Paris, which was the home of the first known institution for individuals with disabilities--veterans who were blind. Scotch 1984) My tale speeds from medieval times to United States colonial history where families and almshouses were the most common residences for people with disabilities. Then onto the early eighteenth century and the industrial revolution which brought with it asylums and hospitals for our ancestors with disabilities. (Lenihan 1976-77) A century later, the impact of the first World War, in conjunction with many other movements such as vocational education, inspired the implementation of the first evolution of Vocational Rehabilitation. (Scotch 1984, Berkowitz 1987)
During the early years of the 1900s to mid-century, medical and social rehabilitation remained the focus of those who worked with people with disabilities. A change of enormous proportions was in the air in post-World War II society. But it went mostly unnoticed in the turmoil of the civil rights movement. In 1962, the year James Meredith racially integrated the University of Mississippi, Ed Roberts, a respirator-using post-polio quadriplegic became the first student with such a significant disability to attend a university. He became the first of a group of people with significant disabilities attending the University of California in Berkeley while living in an on-campus hospital.
This group of students with significant physical disabilities eventually began calling themselves the Rolling Quads. With a clarity still unrealized by many people with disabilities they discerned that their residence in a hospital resulted from fear and inaccessibility. Fear from the medical, rehabilitation, and educational professions that their medical conditions would prevent them from staying far from existing on-campus medical and nursing expertise. And their own fear that their wheelchairs would malfunction or their assistants would not be around.
But even if they left campus they would have encountered problems. --They could not get around Berkeley because there were no curb-cuts for them to roll on. Wheelchair accessible buses were yet to be a dream in most people's worlds. If they could have solved their transportation needs, they still would not have been able to live in the community because there were no houses that were adapted for their needs.
Those Berkeley pioneers did not wait for the revolution; they instigated it. With friends and allies they took to the streets of Berkeley in mid-morning hours and poured tar and concrete and made their own makeshift ramps from the streets to the sidewalks.
Those ramps still exist.
A funny thing happened in Berkeley when those students with disabilities spread their wings. Other people approached them. People who lived in the community and did not attend the University. Berkeley became one of the first cities in the world, if not the first, to fund a community program for independent living for people with disabilities. And the idea spread like wildfire around the country--and the world. (Berkowitz 1987, Brown 1994, Scotch 1984, Shapiro 1993, Levy 1988)
Today the Center for Independent Living in Berkeley (CIL) is still considered the model for independent living centers. Not only in the United States, but around the entire planet. People come from all over this country, and others, to learn from Berkeley, from CIL, and from other outgrowths of that community, such as DREDF, the Disability Rights Education and Defense Fund, a legal rights advocacy organization, which now has offices in Berkeley and Washington, D.C. and the Oakland-based World Institute on Disability, a public policy institute.
Over two hundred independent living centers exist today all over this country--and more all over the world. They are funded through a variety of public and private funds. Our movement has been a successful one. We have brought our issues to the public and we are changing the world. It is still far from a perfect world, but it is a better one for people with disabilities. And as we all continue our work it will become better yet.
I was born in a hospital in Boston, Massachusetts when I was thirty-one years old--and had only an inkling why my stories might be ones worth telling. My focus has been on my own very personal experiences. But they are far from unusual tales. People from every part of the world tell stories similar to my own. Each individual with a disability has stories of a familiar nature. Each person with a disability has lived lives of quiet, and sometimes not-so-quiet, heroism. Each individual with a disability is a hero. Each of us with a disability has provided this world with some kind of act of courage beyond the expected. And that makes all of us heroic.
Not too long ago I was reticent to admit that I had any heroes. I thought that we were all equal and that to single out any one individual was an act of unwarranted egotism. Today I believe that it is act of unparalleled selfishness not to stake our claims to heroism. How can we move through this world, changing it so it meets our needs and the needs of every other person, without promoting our progress--and our set-backs?
In the past few years I have become a promoter--a believer in the concept of creating a positive disability mythology. (Brown 1992) A promoter of the belief that our stories are ones worth telling and retelling. Our stories, our lives, indeed, are the fabric of epic poems and timeless songs. Not only must we not underestimate our contributions, but unless we tell our stories we are doing a great disservice not only to our peers, but to those who will follow us.
In my pursuit of creating a disability mythology I have chosen to focus first on heroes. I decided to do this for several reasons. First, in my own thinking about the concept of the existence of a disability culture heroes play an important role. Second, people everywhere can identify with heroes and heroism because we all know people who fit the category. Finally, I chose to focus on heroes because it is fun. It is affirming and enjoyable to reflect on individual lives and discern the parts of their existence which form heroic acts.
I have many heroes in this movement. Two stories will have to suffice. One is of a man who went in his power wheelchair to a local movie. There was no ramp. The theater management offered to lift him in his chair and take him inside. He agreed. He went in and enjoyed the movie. About a week later though he returned with half-a-dozen other individuals, all of whom used heavy, motorized wheelchairs. The theater management lifted them all in. And shortly thereafter they installed a ramp. (Johnson 1986) As a somewhat parenthetical aside a recently published book describes a similar situation concerning a renovated library. Panzarino 1994)
My second story concerns a lady who, like me, was told that she couldn't do a job. In her case she was informed that she could not teach in an elementary school because her wheelchair was a fire hazard. Like me, she found a lawyer, to vent her story. But unlike my situation, her lawyer found a creative solution. They decided to use the Constitution of the United States to argue that her right to teach was guaranteed by the law of the land. Using the Constitution as a foundation they made headway through negotiations and she did indeed become a schoolteacher before she too turned to a life of disability rights activism. Many people now know this particular story because it is from the life of Judy Heumann, independent living civil rights pioneer, internationally know and respected disability rights activist, and the current United States Department of Education Assistant Secretary of the Office of Special Education and Rehabilitative Services (Shapiro 1993, Levy 1988) My own activities brought me not only into contact with Judy, but eventually led to our being colleagues at the World Institute on Disability, which she co-founded.
I wish I had known of her employment battles when I was told I couldn't write a book because I used crutches. But I didn't. Because not enough of our stories have been told.
Disability culture has become my passion. In early 1994, Lillian Gonzales Brown, a pioneer in peer support and international training activities, and I created a not-for-profit organization called the Institute on Disability Culture. Our mission statement is "promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world." We have begun to do so through publication of Independent Living: Theory and Practice (Brown 1994a), workshops and presentations about disability culture, and endeavors to begin cataloging disability culture activities and artifacts. The National Institute on Disability Rehabilitation and Research of the Department of Education recognized the legitimacy of this work with an award to the author of a 1993-94 Mary Switzer Distinguished Rehabilitation Research Fellowship to conduct research in the field of disability culture.
I cannot rest until as many of our stories as possible have been collected and distributed. I cannot rest until my heroes--people with disabilities--have more than begun to take our rightful place in the world, not only as equals with nondisabled people, but as a group recognized in our own right with our own history and our own future. Our stories must be joined to those other great traditional and epic stories of the world. That is where our stories and our lives belong. In a worldview that recognizes, acknowledges, investigates, and reports on the accomplishments, struggles, failures and successes; the lives of people with disabilities.
Americans with Disabilities Act of 1990, Title I, Section 101 (5).
Berkowitz, Edward D.(1987) Disabled Policy: America's Program for the Handicapped (Cambridge, Cambridge University Press).
Beutler, Ernest (1980) Gaucher's disease, Comprehensive Therapy, 6, no page number.
Brown, Steven E. (1992) "Creating a disability mythology," International Journal of Rehabilitation Research, 15, pp. 227-33.
Brown, Steven E. (1994) Independent Living: Theory and Practice (Las Cruces, NM: Institute on Disability Culture).
Johnson, Mark (1986) Conversation with author.
Lenihan, John (1976-77) Performance: Disabled Americans: A History (Washington, D.C.: President's Committee on Employment of the Handicapped).
Levy, Chava Willig (1988) A People's History of the Independent Living Movement (Lawrence, KS: University of Kansas Research and Training Center on Independent Living).
Panzarino, Connie (1994) The Me in the Mirror (Seattle, Seal).
Scotch, Richard K. (1984) From Good Will to Civil Rights: Transforming Federal Disability Policy (Philadelphia, Temple).
Shapiro, Joseph P. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement (New York, Times Books).