Tag: polio

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.

Posted in Disability, Essay, General Interest, Mental Health, Michael Watson

The Olympics, Polio, and the Medicine Wheel, Part Two

Posted on by Michael Watson PhD

community-seatingThe Olympics have come to a close; the Paralympics follow. Saturday evening Jennie and I watched a Gimp DVD. She is planning to show it to her Expressive Therapies class, along with some material from Bill T. Jones. Its been a while since we last saw Gimp in performance so revisiting their work was a revelation.

The Paralympics is a much-needed, if under-reported competition for athletes who happen to be disabled. The Gimp Project is a collective of dancers, able-bodied and disabled. The Paralypics is a contest; Gimp is a collaboration exploring the world of disability experience.  The first seeks perfection, the latter revels in the beauty of imperfection. The Paralympics pursue inclusion, abet separate and unequal; Gimp tells stories, often casting light on the processes that marginalize and exclude.

There is a remarkable invisibility surrounding these processes, although many activists, academics, and artists have sought to illumine them. It matters little whether these forces  exclude persons on the basis of ethnicity, race, disability, or other difference, the effect is consistent. The systems are pervasive and largely invisible; they are also profoundly human.

The Medicine Wheel holds all of human experience, offering us a view of life as a whole. There is a place on the Wheel for everything that can be encountered, even a space for our collective fear of otherness and contagion. The Wheel reminds us that we will each encounter all that is, whether directly or through the experiences of others. Our fates are inexorably woven together; the fate of each is that of all.

As we meditate on the Wheel we are encouraged to consider that while they seem real, both safety and isolation are illusory, transitory states. The last few months I have found myself wandering the wilderness that is part of the Post Polio experience. Recent health concerns continue to bring up ancient unresolved feelings, along with worries about the future. I have been repeatedly thrown back to the fear and pain of the acute illness and post-illness recovery, and the social isolation imposed on me as a Polio. I am also reminded the effects of the virus continues to impact my life and thus the lives of those I hold dear.

I’ve been exploring the experience of Post Polio through the wisdom of the Wheel. For me, now, Post Polio lies in the North, the place of aging, teaching, and eventually, making preparations to return to the Spirit World. (The North is also the place of preparation for rebirth!) The journey is complicated as I find myself trying to make sense of my nearly lifelong disability from a place on the Wheel where it is also my task to embrace a declining body.

Part of the task is to acknowledge my fear of erasure. We live in an epoch in which Polio was eradicated; we are, for most purposes, a Post-Polio world. I was taught I had survived the virus and should get on with life, ignoring, as much as possible, the devastation to my body and psyche. Yet the path of forgetting and ignoring is fraught with difficulties; the way of assimilation or “passing” is thorny. The normative prescription offers the possibility of inclusion, yet to follow that road is to participate in a collective act of erasure, to become invisible, and thus lose Self.

Every human being comes to a place where s/he is vulnerable; each of us eventually faces the treat of erasure and the powerful emotions that accompany that threat. In a culture addicted to perfection, and dismissive of difference and need, such moments carry added fear and shame. How odd such an essentially human experience is marginalized, leaving so many to face the North filled with loneliness and dread.

As a society we increasingly relegate the task of accompanying folks on the journey through the North to the health care profession and the clergy. As a result, we have marginalized the insight and wisdom that may accompany disability, experiences of trauma, and aging.  In doing so we create great suffering for the very young we profess to idolize, for we deny them context. How are they, in the face of ceaseless messages about the centrality of competition and perfection, to know they are all loveable, all sacred, beautiful, and desirable in their humanness and imperfections?

Our collective focus on perfection sells products and drives our economy, yet blinds us to the fate of our neighbors and the world. Our deeply held collective desire for safety encourages us to abandon our elders, young people, and children, threatens our very being as a species, and steals our Souls. Still, as prophesy insists, we have options. We can risk relearning the wisdom of the elders, symbolized by the Medicine Wheel, accept the complexity and terror of being human, and journey together into a Sixth World. There are, if we make it so, seats for all at the table.

– Michael Watson, Ph.D.

© 2013, essay and photographs (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.

Posted in Disability, Essay, General Interest, memoir, Mental Health, Michael Watson

The Olympics, Polio, and the Medicine Wheel, Part One

Posted on by Michael Watson PhD

Snowy-MorningEditor’s Note: This is the first of a two-part piece on Perfectionism originally posted on Dreaming the World. Part II will post here tomorrow.

I am an elder, and as such I am given the task of teaching and supporting the young. On the Medicine Wheel of this lifetime I am in the Northwest, the place of honoring the challenges of my life, understanding them as best as I am able, and sharing what I have learned with others. Perhaps you will share your thoughts about the experiences I share below; I would greatly value that.

We, along with many others, spent a good deal of time during the past two weeks watching the Olympics. Over time we noticed, especially from NBC’s coverage, that the commentators seem to believe winning and perfection were all important. This is a sad thing. One does not have to watch much before one becomes aware the announcers are ceaselessly pointing out errors and failures. Rather than empathy for the competitors, one is barraged with demands for perfection and minute details about failure to achieve such.  There is very little celebration of the athletes who fail to meet the announcers’ or judges’ criteria.

This hits home on two fronts. The first is cultural. I was raised to appreciate the efforts of all. Winning is fun, but should not shame others. Nor should anyone be left behind after the games are over. Further, perfection was considered suspect. One was advised to build imperfection into one’s art and welcome it in one’s life. After all, we are not the Creator although we are aspects of His/Her creation. Only the Creator can be perfect, and it is likely even S/He makes mistakes; as we are reflective of the Creator this suggests that even mistakes can be good and holy. The unbridled pursuit of perfection endangers the individual and the culture, the community and the ecosystem.

The second part is I am a survivor of Bulbar Polio. My phsysiatrist says I am “a walking quad”; rather than disparaging, this is a simple statement of truth. I have severe neurological injuries; Polio destroyed motor neurons all over my body. My arms and hands have considerably diminished capacity; my legs and feet lack strength and mobility; breathing can be a challenge. I am not perfect by the dominant culture’s standards.

Add to this my Native American heritage and the soup becomes thick indeed. I once heard a man, who understandably thought he was with other Europeans, say something like,  “There is nothing more pathetic than a disabled Indian.”  What are we to do with that? Indeed, what are we to do with NBC’s virtual silence on the topic of the Para-Olympics?

Herein lies the difficulty. One one hand I was encouraged to accept  and honor imperfections. On the other, as a Polio survivor I was taught to do my level best to pass as normal, to overcome limitations, and to forget my illness and its  aftermath. Additionally, as a child in a Native family that was actively passing, I was taught to be invisible, a lesson that surely applied to Polio as well.

It is a profound challenge to resist the limiting messages of our families and the dehumanizing ones of the dominant culture. I have done my best, yet I have also spent much of my life seeking to achieve others’ views of perfection, even though not even normalcy was not an option.This has been painful.

I don’t know whether you have ever thought about the Wounded Healer.  In Traditional cultures ill youngsters are often expected, should they recover, to become healers. I use the term “recovery” loosely. Youngsters who face and survive catastrophic illness may not have the same physical capacities as their normative friends. Yet their illness may also give them abilities and insights not readily available to others. When the child is ill the healers do their best to aid. They also seek to discern the nature of the illness; often such illness are understood to be calls from the spirits, initiations into the realm of healers. When there is a spirit call, training in the healing arts accompanies recovery. The illness frequently leaves a footprint in the life and work of the survivor; he or she becomes a wounded healer, knowledgeable about many of the territories and challenges that accompany illness.

This is a different model than the academic learning focus of the West. Of course, the two paths are not mutually exclusive. Indeed, they may intersect, even overlap at times. Both address the needs of the body. Some Western trained healers have adopted the Indigenous understanding that the soul and psyche must also be attended to.  (Milton Erickson, although not to my knowledge Indian, comes to mind as someone who walked both roads well.)

I have come to this point on the Medicine Wheel by living my life from within this severely injured body. This is a sharp contrast to the physically perfection of elite Olympic athletes, or the health and wealth gurus we see on PBS and on innumerable infomercials. The television sages convey the message to us that illness, poverty, loneliness, and all other forms of suffering are moral failures. They do not speak this directly, rather they hold up their carefully managed perfection as a mirror to our human frailties. They offer advice, even salvation; for a fee we can be just like them. But I, and many others, cannot.  The very lifestyles they espouse harm us, and endanger our precious planetary ecosystem and all that lives therein. Where, I wonder is their wisdom and compassion?

We approach the Spring, the East in the Abenaki view of the Medicine Wheel, the place of rebirth and awakening. I am curious how my changing understanding of this beloved, traumatized body will blossom in the coming year.  I wonder whether our culture can set aside the deeply held values of independence, competition, and perfectionism that shaped the  our country (the very ones espoused by those television commentators). Can we own our imperfections, and acknowledge the harm we have inflicted on ourselves and so many others, inside and outside our country? Can we embrace those who suffer illness, poverty, displacement, abuse, or isolation?

As we follow the journey of the sun into the East, we are invited to begin again, to open our eyes and practice compassion and understanding. May we  find the courage to do so.

– Michael Watson, Ph.D.

© 2014, essay and photographs (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.