"...the folk heroes of disability and chronic disease have not been the millions who came to terms with their problems but those few who were so successful that they passed: the polio victim who broke track records, the one-legged pitcher who played major league baseball, the great composer who was deaf, the famous singer who had a colostomy. They were all so successful that no one knew of their disability, and therein lay their glory." (Zola, MISSING PIECES, 204)
To this list one might add the President, Franklin Delano Roosevelt, who could not walk; the conqueror, Alexander the Great, believed to have had epilepsy; and the world-renowned speaker, Helen Keller, who could not hear or see.
Too many people with disabilities have for too long tried to pass. Our success has been seen in the ways we overcame our disabilities, not in how we have adapted or used our disabilities to forge ourselves. Franklin Delano Roosevelt used every means at his disposal to hide the extent and severity of his disability. Yet, what he learned from having a disability and having to adapt to it every day of his life, shaped his personality and his Presidency.
FDR could be a hero among disability activists. But we know too much about his endeavors to hide his polio and its effects. We are reluctant to claim him, because he too often seemed unwilling to claim us. For FDR disability frequently meant fear of political disaster.
We, those of us with disabilities, have been reluctant, even ashamed to share what our disabilities have signified in our lives. And with good reason. We have been shunned by our communities, forced into institutions by our families, and even killed by our leaders.
But if we are reticent to take the initiative in promoting our virtues who will? There has been a long-term argument in the United States about what we call ourselves. Some have seen this as a debate of utmost importance; others a diversion from more vital issues. But if we cannot know what to call ourselves how are we to know, and to convey, who we are?
When we wish to promote ourselves as a political force; when we want to fit into diverse social groupings; and when we come together to celebrate ourselves, as we are doing this week at this conference, then we are immersed in a persistent endeavor to come to grips with who we are--both as individuals and as individuals with disabilities.
Whether every single person with a disability feels comfortable in being a part of this group is not at issue. What instead must be recognized is that there are enough of us who do claim an identification with our brothers and sisters with disabilities that we relate to each other in a manner that is in some times like a society, at other times like a community, and in some instances like a family. In all of these scenarios we fit into some kind of grouping based on disability. And all groups search for definitions of identity. The debate about what we call ourselves, the discussion surrounding language, represents a corner piece in the jigsaw puzzle of our beliefs about ourselves and who we are.
James Baldwin, the great black-American author, wrote in the late 1960s, "When I was young, for example, it was an insult to be called black. The blacks have now taken over this once pejorative term and made of it a rallying cry and a badge of honor and are teaching their children to be proud that they are black." (Baldwin, STREET, 189)
Establishing identity for those of us with disabilities is not an idle pasttime. Zola's litany of success, quoted at the beginning of this article, is of people who in some way put their disability behind them. You might say that they, or at least the society in which they succeeded, discounted their disability. Their feats were viewed as ones of overcoming disability.
As long as we buy into the mainstream notion of success through overcoming we are submitting to an ideal to which we cannot possibly remain true. No matter what we do, we remain disabled.
To return to Baldwin: "To be liberated from the stigma of blackness by embracing it is to cease, forever, one's interior argument and collaboration with the author's of one's degradation." (ibid., 190)
Living in a society which forces us to examine ourselves by inapplicable standards is the plight in which every individual with a disability must find ourselves. The very word, "disability," implies in some way a difference from the more positive word "ability." Each of us knows, however, people with disabilites who are both more and less capable in various endeavors than our nondisabled peers. Rather than continuing to fight to fit into a nondisabled world, many of us have argued for decades that that world must be changed to embrace and adapt to us. We pontificate that streets and buildings be built with ramps, curb cuts, and wide doors; that interpreters be available at public gatherings; that print material be disseminated in a variety of accessible formats; that Personal Assistants be available to help with routine tasks of daily living, almost everyone, if not everyone in this room is familiar with these demands.
I suggest that these changes are not enough. We must also embrace ourselves. As we are. With our disabilities. With our varied needs. With our diverse strengths and weaknesses. To embrace ourselves as we know ourselves--with our disabilities.
I propose, in fact, even more. I wish to see us not only recognize our disabilities, but to celebrate them. To sing clearly and out loud our praises, our struggles, our failures, and our successes: our lives.
One means of declaring the indomitably of our spirit and our strength is through mythology. To take our lives, our daily encounters, our tears and our laughter, and raise them to the level of an epic story: a tale with heroes and villains; beautiful places and dank dungeons; glorious battles resulting in tremendous victories fought against immeasurable odds and ignominious defeats causing our brethren to shake their heads in sorrow.
Several years ago, at a conference similar in nature to this one, I participated on a panel called "Speakers of the Independent Living Movement: Voices of Independence." The goal of this workshop was to explore, through specific aspects of the histories of the panelists, events that had shaped our movement lives and our consciences as disabled activists. Three of us shared our stories for about forty-five minutes with an audience of a couple hundred people.
When we finished the exciting part began. We left plenty of time for audience participation. But it was not enough. Everyone in the audience, it seemed, had a story they wished to share. One of my colleagues on the panel kept commenting that we had to find some way to take down all the stories that were in that room, let alone what existed outside of it. The excitement of that panel was so vibrant in the air that it almost seemed visible. Clearly many people believed that they had stories that demanded telling. The room was alive with a feeling of community and oneness in a mutual struggle for breaking through both visible and invisible barriers to a sense of group freedom and appreciation. My belief in our common identity was reinforced.
I reluctantly retreated from that setting full of success in having participated in a panel that so clearly touched so many people. But I also wondered what kinds of implications it might have for the future of this movement and for myself. I began to concentrate more and more on our shared experiences, beliefs, desires, and feelings. Always possessed of a passion in the debate around language I began to accelerate that interest into a new passion: the concept of a disability culture and its potential meaning.
One of the most important aspects of disability culture, as I perceived it, was the concept of heroes. As I looked around at the people with whom I interacted I began to see and hear them in a new way. Many of my friends and colleagues, I began to think of as heroes.
I defined a hero simply as someone who did something courageous. Many of my acquaintances fit this definition. In fact, I knew that there had to be people in every community who were performing heroic deeds. People who were well-known and people whom no one knew about. Whether a reputation preceded or attached to someone didn't much matter. I knew, by the nature of the way people with disabilities in this society are treated, that there had to be heroes with disabilities in every community. People who rose above everyday routine, who performed some action that moved beyond the expected and into the exceptional.
It was not a long leap from the notion of heroes to the concept of myth. People with disabilities have been engaged in a struggle to be liberated from an oppressive society. This kind of fight lends itself not only to heroes, but to fascinating stories. More importantly, the struggle is not uniquely American, but genuinely human. It seemed to beg a mythic telling.
When I began this adventure I knew little about scholarly definitions of mythology. But I did know that the struggle of people with disabilities, our struggle, was of epic proportions. Despite my academic background as a historian this was not a story that I wanted to tell in a straightforward manner. Myth is more accessible to the average listener than a documented history of events; myth permits us to be creative and expand our tale into a story to be repeated and retold for generations, and myth takes our struggle and puts it into a universal language which can be understood by every culture.
Because my interest in myth began with the idea of heroes that is where I wish to focus the remainder of this essay. I will intersperse my statements and stories with the first book about mythology I read, Joseph Campbell's THE HERO WITH A THOUSAND FACES. My hope is that this exploration will demonstrate why I am so enthusiastic about using myth as we continue to examine the lives of people with disabilities, our rights, and our struggles.
Campbell, who became known to many Americans because of interviews on Public Broadcasting Stations with Bill Moyers, writes that the prime function of myth is to supply symbols that carry the human spirit forward. (HERO, 11) All of the people, the heroes who are cited henceforth have done exactly that. Each of them in some way has moved us from some kind of static state to a more dynamic one. It so happens that the following examples are true ones.
My first hero is also my mentor in this movement. I have laughed and cried with her. I have fought with her and I have celebrated with her. I have learned from her and I have taught her. Because she encouraged me to take talents I had developed in a world where I knew little about disability and use them to help both myself and my people she will always remain the single person I identify with more than anyone else as my hero.
Because we worked and played together for many years a stream of stories come to mind when I recall our activities. But one story, about something that occurred prior to our meeting, I will always remember as beginning to define for me what the typical person with a disability has to undergo to participate in society.
When she arrived at the University of Oklahoma campus in the mid-1970s she had to schedule her classes at least one hour apart from each other. Why? Because in the event that she happened to need a bathroom she had to have the time to go home. There were no wheelchair accessible bathrooms on the University campus. By the time I required bathroom accessibility in the early 1980s this was no longer a concern. She, and others like her, had fought this battle and won. Every one of us in this room knows that going to the bathroom is no big deal--unless we can't. Then it suddenly looms as one of life's biggest, and most, insistent problems. People needing this kind of accessibility today at OU have more than likely never heard of the people who made their lives considerably simpler. But their insistence on action in fighting the routine building of inaccessible bathrooms will impact generations to come.
Campbell writes that "The hero, therefore, is the man or woman who has been able to battle past his personal and local historical limitations..." (Campbell, HERO, 19) We might append to this statement that the hero possesses a vision of changing the present to make the future a more comfortable place.
Another hero with a disability has related the story of trying to get into a movie theater. There was no ramp. He complained to the management. They said it was no problem. They would simply lift him in his electric chair into the theater. My own personal reaction to this may have been to storm away from the theater. This person did not. He agreed to be carried in.
Several days later he returned. This time he was not alone. He brought several other people with him. All used heavy, electric wheelchairs. He said they were there to watch the movie and he knew from his previous experience that the theater management wouldn't mind carrying them in. They did. And, of course, they learned the lesson of aching backs and unprepared muscles that resulted from their inaccessible entrance. Shortly thereafter a ramp was installed.
I love to pass on this story because it demonstrates to me how one can confront adversity and turn it into something advantageous for the person whose rights are being trampled on. It also shows how subtlety in the face of oppression is sometimes more effective than the sledgehammer approach. Or, as Campbell writes, the hero brings wisdom back to humanity to renew his community. (ibid., 193)
I have a friend who is deaf from a brain injury. Today most people who know her consider her deafness to be her primary disability. Few have heard her stories about how she had to write everything down after her injury so she would remember what she had to do and where she had to go. Or that when she went to college she took copious notes so as not to forget the content of the lectures she attended. Or that she worked all day and went to college at night.
These activities in and of themselves are imbued with heroism. But she did not perform these actions with greater glory in mind. She was simply trying to get by--to make her way in a world which didn't really care about her brain injury or her deafness. Her journey is even more remarkable because of her isolation. She did not know about an independent living or disability rights movement until long after she had completed these tasks. She only knew what she had to do to make her dreams come true.
As Campbell eloquently phrases this kind of quest, while one is alive, life will call--society is jealous of those who remain away from it. (ibid., 207)
Another individual once said that losing his leg was the best thing that ever happened to him. As I looked at him in wonder he went on to say that before his accident his life was chaotic and unfocused. Since his accident he had set goals for his life.
For me this tale became one of life's unforgettable lessons. I began to work this kind of thinking into my own life and discovered there were aspects of my disability which had been enormously positive on my life. Sometimes I have given a talk called, "Why I Like My Disability." The point is that for many of us as many, or more, wonderful occurrences than negative ones have passed through our lives because of our disability.
Campbell says that the hero's ultimate task is to communicate to people who insist on the exclusive evidence of their senses. (ibid., 218) When we hear comments like, "I'd rather be dead than disabled," we shudder at this contemptuous, and naive, devaluing of our lives. But we also have some understanding of it. The comment is based on a feeling that to lose one of our senses, one of our primary functions is so unthinkable that it is unbearable. We know this is false because we have all learned at the very least to live with our disabilities, and at best to revel in them. The heroes among us relay that revelation to others.
The stories of our heroes are underrated and too often untold. These remarks signify only a beginning in the telling of the tales of heroes with disabilities. But it is my hope that more and more of us will contribute to these stories.
They comprise one part of the wealth of our experience. We have much to bemoan. But we also have much, as these stories portray, to celebrate. As a group, and as individuals, we, people with disabilities are living lives of quiet, and sometimes not-so-quiet, heroism. We need to recognize our feats and not be fearful of forging them into the epic stories in which they deserve to be framed.
Mythology is a universal language. It is a set of symbols placed in a context which anyone can understand. Some myths are more complex than others. But all have the advantage of sharing traits common to all humans. As those of us with disabilities enter into the world of mythology we have an opportunity to take the excitement of our daily lives and translate it into stories that can be relayed to people of all languages, beliefs, and desires.
The time to take advantage of this opportunity is now.
Steven E. Brown is 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 and Rehabilitation Research grant #H133B00006-90. This address was delivered at the "Independent Living: Toward the Twenty-first Century" Conference in Oakland, CA on October 2, 1991. It was published as "Creating a Disability Mythology," INTERNATIONAL JOURNAL OF REHABILITATION RESEARCH, 15, (Winter 1992), 227-33.
Baldwin, J. (1972). "No Name in the Street." New York: Doubleday.
Campbell, J. (1949). "The Hero with a Thousand Faces." Princeton: Princeton.
Zola, I.K. (1983). "Missing Pieces: A Chronicle of Living with a Disability." Philadelphia: Temple.