Disability Stories: Resistance, Resilience, and Community

Blogging Against Disablism Day, May 1st 2014

Today is Blogging Against Disablism Day! As always, a huge thank you to The Goldfish and Stephen who organize this yearly event!

Disablism is an academic Gimp term covering all concepts, ideologies, and practices of discrimination against people of Disability. It reflects the painfully common belief that the abled body should be the model for what is normal, and the many narratives and practices that seek to assure the abilist model remains dominant. Its companion, the able-bodied gaze, is a stealthy and powerful ally in the effort to marginalize persons who happen to be differently bodied and abled.

Those who grew up in the Fifties may remember one such practice: that of the disabled body as appeal, in which the deformed or weakened body is portrayed in order to create fear and/or guilt and thereby solicit funds. Perhaps you remember the Polio poster children enlisted as fundraisers for the March of Dimes, a primary source of financial support for vaccine development and for Polio survivors and their families. These children often grew up to become adults in a world largely devoid of Polio, yet who needed services and who were largely abandoned by the March of Dimes when Polio was no longer either sexy or profitable.

The Polio experience taught many of us survivors and our families that Disability is culturally defined; ideally it is a story negotiated between, rather than imposed on, individuals, groups, and the dominant culture. The actual experience of Disability is personal, and a common Disability moment is finding oneself subject to the Able-bodied Gaze, discovering one is being looked upon as less than or other. This is the foundation of all Freak Show style practices, including hospital rounds. It was also the practice by which many Polios and our families were marginalized, quarantined, and or ostracized.

Disability is not contagious, although Disability is ever-present in our lives, an immediate and unpredictable companion and possibility. A Disability Psychologist I respect likes to remind folks that , “We are at best temporarily able-bodied.” We cannot escape Disability’s presence even by keeping the Disabled out of sight.

As a writer, storyteller, and visual and performing artist, I have long been interested in Disability as storied experience, and in the ways Disability is portrayed in vernacular culture and the media. As a psychotherapist and healer, I am curious about the way we learn Disability and the means we find to share self, even while under the influence of disabling notions about Disability.

I am fascinated by the resilience of persons who made their way in the world as freak show artists by creating strong communities, who utilized the different body to deflect the able-bodied gaze and create empowering , engaging, and enfolding narratives about the human experience. I am heartened by the insistence of Disabled individuals and communities that all people be met with inclusion and acceptance, and our collective willingness to put our hurting bodies on the line in service of that goal.

At the same time I am surprised when others fail to note the challenges faced by people of Disability, or refuse to acknowledge our courage and resourcefulness. I am bewildered that people of good heart turn away from the world-wide struggle for Disability Rights, simply because the obstacles and resistance to inclusion are strong. I am confused when people fail to see the innate kinship between Indigenous people, persons of color or less privilege, and we Disabled. I am perplexed when those of us with disabilities define ourselves narrowly, as through  Abilist eyes, rather than taking pride in our many selves and communities.

My own identity as multi-tribal Native, Scott, English, and Disabled is filled with juicy contradictions, nuances, and possibilities. I know that all Disabled persons hold many identities and marvelously diverse selves. Yet so often the Disablist myths about us threaten to obscure or erase the magic and mystery of our being.

With my parents’ tacit encouragement I grew up passing as neither Disabled nor Indian. Of course, both were at best only marginally successful. Although I have light skin and brown hair, others have often identified me as Native American. While I have tried hard to hide the bodily impact of Polio, my body is twisted and I cannot run. So often I have been outed, often with great pain.

Still, as I have grown into elderhood my resolve to resist demeaning stereotypes, images, and narratives about my Native and Disabled identities has strengthened. I have become more willing to be visible and to share stories of hope and resistance. The Indigenous elders who were my teachers would say, “This is a good road,” and it is.

Will you share with us the stories of your journey, your acts of courage and resistance, your joys and sorrows, and the blessings Disability has brought along with its hardships? The circle of council and community is good. The fire is warm, and your stories will be held as precious here. Perhaps the stories we share will touch, even heal one another. May it be so.

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7 thoughts on “Disability Stories: Resistance, Resilience, and Community

  1. Dear Michael,

    I am moved by your story, and love the way you use storytelling to help people understand. I’m not so good with a computer, so I don’t know how to share this, except as a comment–a long one–so I hope that’s okay. It is a story about disabilities and storytelling as a healing art.

    A Gift to be Shared…
    by Naomi Baltuck, © 2002

    For every story that a storyteller gives voice to, be it folktale, literary, or historical, there is an untold story running just beneath the surface.
    My mother, Aunt Loena, and Grandma Rhea would sit at the kitchen table and drink coffee, telling stories of our family hardships, courtships, scandals, jokes, and joys. They were passing down our history. Their stories were chosen carefully, I realize now, to impart values, wisdom, and warnings. Of a cousin who never married because of her dictatorial mother, my own mother began, “You can get too tangled up in an apron string…” Mom concluded another story, “You’ll find you have something in common with everyone you meet, even if it’s only that your feet hurt.”

    I was in my twenties when I discovered storytelling as an art form and a profession. My first “learned story” was a Japanese folktale about a stonecutter searching for his place. Like the needle on a compass, that story pointed out a new direction in my life. Before I had finished the first telling, I knew that I wanted to be a storyteller.

    Stories can be pointed messages, tiny arrows shot directly from the heart to the brain. There is no hidden meaning in the Russian tale of two frogs trapped in a bowl of cream. One frog gives up and drowns. The other, with the brave paddling of its tiny frog legs, churns the cream into butter and escapes. Other stories, no less potent, must steep before the meaning becomes clear, but we still feel its point when the story strikes its mark.

    Vi Hilbert is an Upper Skagit elder, a traditional teller, a very wise and perceptive woman. She is also a cherished friend, and one who knows my most personal stories. She doles out her medicine sparingly, but to great purpose. Vi prescribed this Klickitat story for me…

    …A long time ago there was a girl. Her thoughts were slow, her fingers clumsy. She could not keep up with the other children, so each day she sat in the shade of an ancient cedar tree. From beneath its sheltering branches she would watch the other children laugh and play.

    The cedar tree felt sorry for her. “Little Sister, do you want to learn something new, something important?”

    No one had ever bothered to try to teach the girl anything. “Oh, yes! Please teach me…”

    The cedar tree teaches the girl to use its tender roots to weave the first cedar basket in the world. It requires patience and determination before she can make a basket that will hold water. When she succeeds, the tree tells her that now she must make it beautiful.

    “I don’t know any designs. I am..too slow.”

    “The Creator has given you many patterns to choose from. You can see them in the mountains, the rivers, the footprints of birds…”

    “I can’t,” thought the girl. But the cedar tree had so much faith in her. “I will try,” she said.

    She succeeds, and the cedar tree tells her to give her basket to the oldest woman in the village.

    “But I worked so hard…”

    “This is how it shall be, Little Sister,” said the cedar tree. “You must share your gift with others.”

    So she did. How good she felt to have a gift to give, and how grateful were her people. Even today the Klickitat are famous for their weaving of cedar baskets. And tradition still tells them that their first accomplishments are to be celebrated by the giving of those gifts to the elders of their village…

    I cried when Vi told me the story of the girl and the cedar tree. It was like hearing my own family story woven, like invisible thread, throughout the fabric of that story.

    When I was a teacher, I shared with my students the stories of my childhood, when I was one of seven scruffy kids running barefoot in the back alleys of Detroit. The kids’ favorites were about my best buddy and twin brother Lewis. There was the time Lew chewed up bananas and threw them up on the kitchen ceiling to see if they would stick; they did. And the time Lew blew his nose into a tissue, threw it out the car window and that stuck too, to the winshield of the police car that pulled Mom over for littering. There was a whole series about the things Lew managed to flush down the toilet before they got stuck in the pipes.
    And Lew’s stories stuck too. “Tell us a Lewie!” the kids would plead.

    I had been telling “Lewies” for some time, when I overheard an argument between two students.

    “Retard!” said one child. “Mental!” came the retort. My gut reaction to hearing those words hurled as insults prompted a decision.

    Storytime came and they begged me, “Tell us a Lewie!”

    “I will,” I promised. “There’s another story about Lew that you should know. It’s not so funny as the others, but it’s my favorite.” And I proceeded to tell them the rest of Lew’s story.

    Lew didn’t learn to talk until he was five. When it was time for him to go to school, he attended “special classes.” He would come home with bloodstains on his pants where the “regular” kids had pricked him with pins, and bruises where they had thrown stones. That didn’t hurt as much as the names they threw at him…names like “retard” or “mental.”

    But Mom had told all her kids that we could do anything we set our minds on, and Lew believed her. The happiest day of his life was when they integrated special education kids into regular grades. I was in 10th grade when Lew was placed into 7th grade. To earn C’s and B’s, Lew worked harder than most kids did for an A. And he had to work even harder than that to overcome the prejudice of several teachers who resented the extra work they assumed mainstreaming would mean.

    I was a high school senior, when Lew went into 9th grade. For the first time, my twin and I attended the same school. Together we took every elective we could fit into our schedules: drama, ceramics, even the Sci- Fi Club. I was a college junior by the time Lew graduated from high school.

    “What are you going to do now, Lew?” we asked.

    “Go to college, of course, like all my brothers and sisters.” No one had told him that he couldn’t make it through college. He wouldn’t have believed it anyway. So Lew enrolled in the two year program at the community college, but he had to learn to drive to get himself there. My sister Con gave him her old clunker, a ’67 Pontiac. The front passenger seat was dubbed “the terror seat,” and we took turns teaching Lew to drive. He managed to pass his driving test, get his license, and drive himself to college each day. Two years later, at his graduation, we asked, “Now what, Lew?”

    “I’m going to work for Social Security, just like our Dad did.”

    If Lew felt no apprehension, the rest of his family did. To work for the government, he would have to pass the civil service test. There would be no kindly professors to give extra help, and his sisters couldn’t coach him through this one. Mom drove him downtown and he took the test. His sisters called home every night to see if the results had come in. Finally they came.
    Lew had flunked the test. But if we were discouraged, he wasn’t. He signed up for the next one. He flunked that one too. After the third time, Lew began signing up for the next test date before he got the results back from the last one. I had just moved to Seattle when Lew called to read me the letter over the phone. To the folks at the Federal Building, it was just another form letter informing some guy that he was now eligible for a government position. But to Lew, it was an open doorway, a pair of wings.
    Being eligible and being hired were two different matters. Detroit was in the midst of an economic depression. Few were hiring, and no one would hire Lew. But in Seattle, there were three sisters, a booming economy, and a major branch of the Social Security Administration.

    So Mom bought him a ticket to Seattle and a new suit. “What color suit, Lew?”


    “You’ll have navy, for good luck.” Mom helped him pack a bag, and drove him to the airport. Two weeks later, he had a temporary job. Six weeks later he had a permanent position in Social Security.

    I concluded my Lewie, “…and today my brother Lew has his own condo, computer, and a glo-in-the-dark toilet seat. He receives awards for job excellence and good attitude, but more importantly, he is loved by his co-workers for baking the best chocolate chip cookies and caramel cakes west of the Mississippi. Lew has traveled throughout Europe, is the favorite uncle of all his nieces and nephews, the only one in the family who can program a VCR, and he is still my best buddy. Best of all, he prefers the bus to driving, and that is a happy ending for us all.”

    The kids were quiet. None of the usual giggling, and only one question. “Is that story true?”

    “Cross my heart,” I said, shooing them out for recess. I wondered…had I given them too potent a dose of reality? Several days later, my question was answered when we began our class project, a movie to be written, filmed, and starred by students. I had borrowed Lew’s projector, and was showing examples of movies made by previous classes, when the film broke.

    “This needs to be spliced, and I don’t know how,” I confessed. “This is a job for Super Lew! Tonight I’ll take it to Lew and he’ll fix it up as good as new. For now this means you get an extra recess.”

    The other kids leapt up and scrambled for the door, but Nicky lingered. “Because,” Nicky declared firmly, “we’re going to keep trying and trying until it’s fixed. Right?”

    “That’s right, Nicky.”

    “We’re never going to give up.”

    “That’s right!” I told him as I packed up the projector. “I’ll bring it back tomorrow, and we’ll try again.”

    Nicky headed toward the door, but stopped just short of it. He turned toward me and, beaming brightly, fists held high, like an Olympic Champion’s, Nicky shouted, “Just like LEW!”

    The room still echoed with his voice as I stood alone in the classroom, thinking over Nicky’s words, and his story. Earlier in the school year, five year old Nicky had been stricken with a rare and devastating virus. He had been hospitalized for weeks, and they didn’t know if he was going to make it. He survived the illness, but it had left him paralyzed and in a wheelchair. The doctors told his parents that he might never walk again. In spite of gloomy predictions, Nicky went from wheelchair to walker. Now his gait was slow and clumsy, but he was on his own two feet again. He still struggled, but now he had a story, and a hero. Nicky WAS a champion. Just like Lew.

    I rarely tell Lew’s story, out of respect for his privacy; it is with his special permission that I share it now. But when I tell Vi’s story of the little girl and the cedar tree, it is shorthand for Lew’s story. It is Nicky’s story. It is a story of special heroes and heroines who overcome incredible odds through sheer force of will. It is a celebration of spirit and courage and persistance.

  2. I guess because of my (long) nursing career, I’ve come to not name disabilities as disabilities. I don’t mean I don’t notice them in the sense that I want to be available if asked. But I think it’s critical to see persons as persons, not define them by their disabilities. And of course, in this learning experience we call aging, I find myself face to face with so many more limitations in my own life. My biggest “handicap” in dealing with these persons is the tendency to jump in and “do for” instead of allowing them to do what they can and then stepping in if indicated or if the person asks. It’s a nurse thing, I suppose. Thanks for bringing this to the forefront, Michael.

    • Victoria, aging is indeed full of challenges. Many younger people see aging as a disability! Not that life gets easier mind you. Anyway, we are so luck to have you nurses. I dread to think what medicine might be like without you.

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