Posted in Disability, Essay, Michael Watson

Still Here: Blogging Against Disabilism

Posted on by Michael Watson PhD

Lone-CyprusToday is Blogging Against Disabilism Day. Disabilism is a Gimp term for the ideology and practice of discriminating against people with disabilities. Discriminatory practices of all forms appear to be on the rise in North America. In the U.S., where all programs that protect minorities are under attack, there has been a growing chorus of calls for the dismantling of the Americans With Disabilities Act.

Contrary to much of the Disabilist propaganda, life remains very difficult for most people with disabilities. Much architectural infrastructure remains inaccessible, and the unemployment rate for persons with disabilities is double the rate of the non-disabled. It is likely most people with severe disabilities have given up looking for employment and are thus not counted amongst the unemployed.

The 90’s were, throughout the Western World, a time of disability activism. In the U.S., many of the activists were Polio survivors. At the time, the everyday world was, far much of the disabled community, simply inaccessible. If one used a wheelchair, one simply could not get on a bus! (The playwright and disability theorist, Kaite O’Reilly recently discussed both the disability civil rights movement in the U.K. and the workings of Disabilism in a marvelous lecture. I encourage you to watch.)

Until our civil rights movement, people with disabilities were largely invisible. When I am in a wheelchair in a crowded space, say a museum, I remain invisible, as people literally trip over me. When I am in India, I am a very visible anomaly: a professional person navigating the world on crutches. (An Indian colleague recently told me that disability cannot be discussed at the moment in India. It is too hot a topic.) Most disabled people in India stay home.

Back in the early 90’s Bill T. Jones, the MacArthur Award winning choreographer, created a piece entitled, Still Here.  The dance gives expression to the lived experience of persons with life threatening conditions, including disabilities. It created a furor! In 1997, Bill Moyers interviewed Bill T. Jones about Still Here. It is one of my favorite hours of t.v.. Not long ago I wrote a post about Still Here and its continued resonance for Native people and folks with Disability. The sad thing is that there are a great many people in North America who would like us Gimps and Natives to be gone, or to at least stay home and out of the way.

Beyond the idea of Disability as label or stigma, is Disability as lived experience. I have spent much of the past few months addressing Polio related issues. Working with a Polio knowledgeable therapist has helped me revisit the illness and its aftermath, understand some of the new challenges I, and other Polios, face, and acknowledge some of the losses associated with Polio. The therapist has given me information to read and poked sore areas of my psyche with skill and kindness.

I am deeply appreciative of the resources, kindness, and training she, and other Polio clinicians have showered on me. I am also grateful to all those who helped me understand the ways the trauma of Polio, and the able-bodied gaze, have shaped my thinking and life. At times. I find myself both relieved and filled with sadness and grief; there are so many losses.

There was a time when I was able, a before and after Polio, although that was many decades ago. My therapist likes to remind me that those without disabling conditions are temporarily abled; disability is always possible. Perhaps that possibility keeps many anxious and avoidant of persons who are clearly disabled. One may pass but probably one cannot hide from one’s disability or from the losses it brings to life. Nor can one hide from Disability itself; Disability stalks everyone.

Oddly, I have the sense of Polio as present and immediate, even in a world where it is thought, like winter’s snow, to have melted away almost to extinction. Polio is a virus, a piece of RNA that infects cells, reproduces itself in enormous quantities, and leaves the cells weakened or dead. It can present as little more than a stomach upset, or leave a person paralyzed or dead.Whether we acknowledge it or not, Polio remains an active presence in our world, especially in the lives of survivors and their families.

As I write, a flock of geese flies over, headed north, and the radio news announces a polio outbreak in Afghanistan in which at least 25 persons have been made ill. I have been rereading Anne Finger’s Elegy for A Disease, and the book lies open on the sofa. It is both a personal and a social history of the disease, an illness with a long history of influencing human lives. I have the sense Polio is sitting with me as I write and ponder, an alive, thoughtful presence, vibrant and well in spite of our efforts to eradicate it. Polio doesn’t seem to be going anywhere.

We Gimps are Still Here as well. We, too, are not going anywhere.

– Michael Watson, Ph.D.

IMPORTANT NOTE: In acknowledging of this day, its importance, and of the challenges disability bring to the lives of the disabled and their families, we are opening Mister Linky for you to share links with us and with readers to your own posts on disability or to a post you’ve read that has moved you to a greater understanding. These do not have to be recent posts. As an alternative, please feel free to leave a link in the comments section.

© 2013, essay (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

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11 thoughts on “Still Here: Blogging Against Disabilism”

  1. I once heard an HR manager saying he prefers to hire disabled and people with chronic diseases, because, he said with admiration, ‘…they are never ill’. He spoke with respect on how tough disabled and the chronic ill people are compared to those ‘who stay at home because of a snotty nose’.

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  2. Michael, I hope you believe me that this manager spoke with respect and kindness. It didn’t sound at all like stereotyping, more as a big compliment.

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    1. Hi Paula, The problem is that often folks with chronic illnesses or disabilities are afraid to miss a day of work. One simply can’t afford to lose one’s job and risk not locating another. As a result, workers place job retention over self care, with serious long term repercussions. The goal is to have disabled folks held to the same expectations as able-bodied folks. We need to stay home when we are ill, or when we simply need a day off.

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  3. I understand you, but in my European home country this is a bit different. Both disabled and not-disabled people who take sickness leave get paid benefit money for the same amount of time. The HR manager was really referring to them being able to endure more, knowing better how to deal with set backs and hardship. Maybe you are right about stereotyping, but this was a positive intended remark.

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  4. Michael, I didn’t know about “Disabilism” as a term and appreciate your sharing and your experience and insights.

    Many years ago as a recruiter, my company sent me for Windmills Training, which I think is no longer available. It was a time before ADA and disability rights. It was an eye opener, a three-day experiencial and informational class taught by disabled personal. We learned how disabled adapt, how functional they are, and that many of us have disabilities we don’t even acknowledge but have adapted to. Poor vision is, for example, a common disability to which so many of us are fortunate to adapt by wearing glasses. If it weren’t for that, we might be perceived as unemplyable and we wouldn’t be able to do some things we take for granted, like driving cars or running other heavy equipment. This is a very minor disability, but when we think in those terms, it begins to help change thinking. For many the circumstances of our upbringing can turn into disabilities that are not visible.

    Among the things we learned at Windmills was that the disabiled actually have fewer work-place accidents because they have learned to be aware in their movements and careful. We learned not to assume a job couldn’t be done by a disabled person and not to make assumptions about the kind of accommodations people need. Ask the applicant, we were advised. Sometimes the accommodation is as minor as a simple reconfiguration of the work area, which may involve moving some desks around to create one wide isle for passage.

    All my life in employment and training, I encountered people who had promise and still I often faced insurmountable difficulties in getting my own employers or others to hire them. Frustrating to say the least, sometimes truly infuriating.

    Now, of course, I know first-hand what it is like to have an apparent disability and if it weren’t for my inclination to accept and move on, I’d probably be in bad shape. As it is, I just roll with the punches, which often involve – not the constraints of illness – but the assumptions of others.

    People are forever tisk-tisking because they think the fact of needing supplemental oxygen means I must have been a heavy smoker. More than one parent has pointed me out as an example of what will happen if their child smokes. The irony is two-fold. I have never smoked in my life. I don’t drink alcohol and have never used illicit drugs. (I’m pretty boring!) I worked-out all the time and I eat a healthy diet. What is more important then being misjudged is that part of the cause of my disability is environmental, making everyone vulnerable and something we need to join forces and fight. There are some 360 different causes of Intersitial Lung Disease and they do not all evolve from autoimmune or other systemic or organ-specific dysfunctions.

    Of the many works of disabled people with truly able talent that I appreciate is the stand-up comedy of Palestinian-American Maysoon Zayid: “I got 99 problems … and palsy is just one of them …”

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    1. Thank you, Jamie,

      Yes, there are many reason one might need oxygen, and increasingly, smoking is just one of them. I believe that one of the lasting ideas of the Disability Rights movement is that Disability is a social issue, and disability is socially constructed. people tell all sorts of stories about the disabled people they see, and most of them have no truth value. The most interesting stories are lived ones, about the challenges people with disabilities face, and the ways those stories speak to the central issues and perils of our time. Perhaps that is part of the reason many politicians don’t like people with disabilities very much.

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  5. Dear Michael,
    By telling your story, you are creating an awareness and educating the public by opening their hearts. Speaking out is so important! I love the way you use stories, both personal and traditional, to illustrate your message. I try to do the same. For our Bardo readers, I am (I hope) creating a link to the article I posted on your blog about Storytelling As a Healing Art, with an emphasis on coping with disabilities. http://www.naomibaltuck.com/Npages/AGift-ARTICLE.html

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  6. Thank you for opening up this discussion. I wonder how to break out of the taboo that keeps me from inquiring and listening for stories from the disabled with whom I work. Is it terrible to say, “I see that you’re in a wheelchair. Tell me about yourself.” ?

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  7. Hi, Michael. I have both family and friends with disabilities, and I guess I never thought about how difficult it would be for them to become gainfully employed. Disabilism is definitely something that I think most people are ignorant of – we assume that there are so many special programs out there to help those with disabilities that surely one of them will make sure they have a job if they need it. Thanks for writing about this. One of the stories I have read not too long ago was about a boy with a rare muscle disability and his (3-legged!) best dog friend. 🙂 I think it’s important for people to learn more about service animals, as well, and how integral they can be to helping those with disabilities. Here is the link to the article. There is also a short video with it.

    http://www.huffingtonpost.com/2014/02/18/owen-howkins-boy-and-his-dog_n_4809963.html?ncid=edlinkusaolp00000009

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Kindly phrased comments welcome here.

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