I am not a cripple stud. I know a lot about being crippled but no one has ever mistaken me for a crippled stud. Cripple studs do exist however. We all know what a cripple is. A cripple is a lame or partly disabled animal. A cripple has experienced or was born with a damaged or defective body part. A cripple's body is physically impaired. We know what a stud is. A stud often refers to a male animal kept primarily for breeding. In the human realm a stud is a young man who is good looking, virile and has sex with multiple women. Studs, human and otherwise, are impressive. Cripples on the other hand are not impressive. In short, few would ever put the words cripple and stud together. I know one group of people who are the exception: carpenters. A few summers ago my son and I were helping good friends replace a window and I learned that crippled studs abound. In virtually every home in America a cripple stud lurks behind the dry wall. I find this wildly amusing. In carpentry, the word cripple, refers to a special purpose wall stud or roof rafter. A cripple stud is located above a door or window. Cripple studs are like any other studs--they are simply cut shorter to allow a window or door to be installed and provide a nail base.
I did a google image search for cripple stud. I found a lot of images of complex wall designs. I did the same image search for the word cripple. I was not impressed with what popped up on my computer screen. I found the archetype wheelchair logo. I saw pictures of many amputees. I saw lots of images of antiquated wheelchairs. I saw images of people begging on what appeared to be Victorian era streets. I did not see one powerful or what could be deemed a positive image. I did not see a single crippled stud. Other google searches were suggested: cripple stud walls, building cripple stud, do it yourself cripple stud, jack studs, framing a wall with a window and other carpentry specific suggestions.
I object. The good folks of google think crippled studs do not exist. Crippled walls are firmly limited to wall supports for a door or window. I have news for google. We crippled men and women like sex. Surely somewhere in America a crippled stud exists. Perhaps the young men depicted in the film Murderball are studs. Surely, there must be some crippled young man out there that is young, virile and good looking having sex with multiple female partners. So in my search for a cripple stud I did another google search: cripple stud sex. This was a big mistake. I saw lots of images I did not want to see that fit squarely into the strange world of sexual fetish. And this is a problem. On the rare instance one puts the words sex and disability together the first thing that pops up is strange or freakish. The point I am trying to get at is that cripple and stud are incongruous. Stud and cripple do not go together and I cannot help but wonder if some drunk Middle English carpenters of yore came up with idea of linking cripple and stud as some sort of joke. Sex and disability are are also thought to be incongruous. I object. This in turn led me to wonder if disability can be sexy. I abandoned the internet and went to my book case filled with memoirs written by people with a disability. It did not take me long to realize we cripples write about sex. And yes we cripples like sex.
The most diverse book I have read on sex and disability is titled Sex and Disability edited by Zobert McRuer and Anna Mollow. Published in 2012 the books origins date back to the 2004 MLA (Modern Language Association) meetings. For those non academics reading this post, yes it can take that long to produce a book whose origins can be traced back to a particular session at an academic conference. What I like the most about Sex and Disability is its particular focus. Major studies in sexuality, think foundational texts, ignore whether crippled men and women have sex or are interested in sex. Even queer theorists often blatantly ignore sex and disability--a remarkable oversight for an otherwise socially aware disenfranchised group. I think there is much we can learn from discussing sex and disability. The topic opens up a sea of possible erotic connections that might otherwise be ignored and as Anna Mollow noted in the Introduction crippled people have a "libidinal investment in all this". Multiple authors in the volume make the point that neither sex or disability is static. When I was a young man I was often asked "can you do it?" This question made me angry and sad at the same time. If I were your archetypical bipedal man would a woman ask such a question? Not a chance. Fast forward 35 years and I am not asked this question enough. This change makes me wonder: have we as a society advanced so far women assume we paralyzed men are sexual studs? Another darker thought comes to mind: Am I so old it is assumed my sex life is the past? Perish the thought. But then again one of my students last semester referred to me as being "an elderly man".
I had sex before and after I was paralyzed. But the fact remains I have spent virtually my entire adult life paralyzed. In fact I have lived with paralysis far more than I lived without it. And I think being paralyzed makes me a better man and lover. In having my sexuality routinely called into question as a young man I was forced to think about the way men and women approached the body. I knew I could never measure up to social ideals. I was and would always be crippled. Women faced a comparable conundrum. Only a tiny proportion, if any, women can measure up to social ideals associated with beauty. A crippled man, and for the women I have been intimate with, sexuality involves much more than a physical act. Sex is about the entire body and mind. And let me tell you we humans are wildly creative and adaptable when it comes to sex. Men and women approach the body in radically different ways. This has led to much frustration on the part of men and women. It also led to Feud's famous line: "What is it that women want?" I am not sure I have much to offer in terms of an answer as there have been times in my life when women have absolutely baffled me (and I have no doubt I have bewildered many a woman). I think what I am trying to get at is that we crippled men have been forced to think out of the box about every aspect of our life. We cripples have no choice but to master the fine art of human adaptation. Our ability to adapt is an integral part of our lives, sex included. Disability, sex, and bodily pleasure and difference are all intertwined for me. Herein lies a secret for the female readership of this blog. Paralyzed men make the best lovers. Forget about all those bipedal men. Afterall, we paralyzed guys are crippled studs.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Saturday, June 8, 2013
Cripple Stud
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, June 5, 2013
I am Not Alone Part II
Wel the stars must be aligned in some way. Smart Ass Cripple just answered a question on his blog today about how does one become a bitter cripple. See http://smartasscripple.blogspot.ca/2013/06/ask-smart-ass-cripple-volume-iv.html His answer is classic. It had me on the floor laughing. First he defines what a bitter cripple is and then explains people without a disability can only be honorary bitter cripples.
The term bitter cripple does not refer to a physical condition. It is, rather, an advanced state of consciousness. It is an exquisitely indefinable stage of enlightenment that is attained by freeing one’s self from the tyranny of bull shit.
A bitter cripple, essentially, is a cripple who is pissed off about how cripples are treated. There is no single path to becoming a bitter cripple. I view achieving enlightenment (religious or otherwise) in the same way I view achieving orgasm. Who cares how you get there, just so you get there.
However, to truly understand what it means to be a bitter cripple in all its many dimensions, one must actually be crippled. But the good news is the enlightened uncrippled like you can become honorary bitter cripples. All you have to do is convince an actual bitter cripple to bestow that title upon you.
I must warn you though that even being an honorary bitter cripple is a lot of work. Bitter cripples and our allies are on the frontlines of the ongoing War on Bull Shit. The allure of bull shit is relentless. It’s always trying to win you back, always trying to convince you that you shouldn’t be so upset so much. Bull shit wears many disguises. You must be vigilant.
It's much easier to just give up and be a sweet cripple or, even worse, a bittersweet cripple. Being a bitter cripple is a lifelong commitment. It can really wear you down. I hope in my lifetime the forces of bull shit will be vanquished to the point where I can ease up a little and retire to the status of bitter cripple emeritus.
Yup there you have it. I am waging a war on bull shit. What have I gotten myself into.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
I am Not Alone: Bad Cripples Abound!
I have written about the dichotomy between being a good cripple and bad cripple. Briefly, a good cripple is always cheery. A good cripple never gets mad and is always appreciative. A good cripple loves to educate the general public. A good cripple never questions why access is absent or inconvenient. A good cripple does not assert his or her rights. A good cripple is compliant and chipper. A good cripple is, well, sort of like my like my labrador Kate who oozes happiness.
I am not a good cripple. I am bad, a bad cripple. I have a boat load of angry emails telling me exactly how bad and bitter I am. I also am subjected to nasty comments on a regular basis when I assert my civil rights. You see I am not a doormat. I do not like it when people think I am physically and cognitively disabled. I can read a menu thank you very much. I can get in and out of my car all by myself. This is not "amazing" and I dislike being stared at when I doing I am in the process of transferring in and out of the car (kids who watch me get a free pass--they are just curious). I am insulted when a stranger accosts me and tells me "I would rather be dead than paralyzed". Gee thanks for sharing. I resent when I go out to eat that I am seated in the back at the worst possible table. I refer to this as the cripple table. I get angry when bus lifts and elevators are broken for weeks at a time. I have no hesitation asserting my rights when airline employees are determined are point blank rude.
I am not alone. We bad cripples are multiplying at an astonishing rate. Why we bad cripples even marry, divorce, and have children. And yes, I have brain washed my son into thinking I share the same civil rights as the bipedal hordes that populate the country. Don't call child protective services. It is too late he is an adult. Be forewarned there are others like me. Mike Ervin who writes at Smart Ass Cripple is one sarcastic son of a bitch who makes me laugh on a regular basis. And I discovered another bad cripple today. Good God it is an epidemic! Lock up the children. Check in on Grandma and Grandpa. Lock down the schools. We are breeding! Sex? Oh no, you bad cripples are not just bad but sexual beings. Yuck, that's gross. For the record I have had sex once. I did so because I wanted a son. I promise I did not enjoy it. All sexual thoughts have been expunged from my mind.
So who is this bad person I discovered? She is Andrea Chandler. A crippled Quaker. Try saying that fast ten times. She is married too. And she has pets! Wow, she is amazing! Pets, yikes she can do it all. Chandler wrote a gust post at Feminist Sonar hosted by Elas E. Sjunneson-Henry. And yes Sjunneson-Henry is bad too. She might even be badder than me! She is a disability studies scholar and activist and burlesque historian. Come on break out the strippers. And to think I thought my interest in body art and modification was different. Back to Chandler. She wrote a great post in April titled "The Dog & Cripple Show is NOT Open for Business". See http://feministsonar.com/2013/04/the-dog-cripple-show-is-not-open-for-business/ In part this is what Chandler wrote:
Gentle readers, I was not a cheery and inspiring ray of sunshine before I became disabled. Why would I become one now? Not that I have any particular animus for the Good Cripples among us merely for being Good Cripples. You do you, brothers and sisters. What raises my blood pressure every time is when people try to lecture me (or another angry cripple) about why we, too, should be Good Cripples.
These evangelists never, ever suggest that maybe non-disabled people should get a fucking grip on their curiosity, exercise some self control, and not ask for in-depth details on how crippled bodies work. The evangelists never point out that any non-disabled human being over the age of 5 has learned that sometimes you don’t get your curiosity satisfied, you don’t get to touch something just because you want to, and that some questions are rude. No, these people just make constant demands for people with disabilities to turn themselves into traveling teachable moments, as if we have no right to boundaries, to privacy. As if we have no right to decide who can touch us when, or what information we want to share with total strangers.This is, not to put too fine a point on it, bullshit. When it’s another crip telling me to stop being a bad cripple, it’s depressing bullshit. There are millions of people with disabilities in the world, which means there are millions of ways of being disabled, all of them valid. What works for me, or for you, does not necessarily work for anyone else. Our bodies and lives are too different. If you want to be a Good Cripple, knock yourself out. We all have the right to decide when, where, and who we will educate, and how much information we will share while doing so. Being disabled does not magically negate my basic human right to decide these things. Being crippled does not put anyone under an obligation to lay themselves bare for the idle curiosity of strangers.
I am not a good cripple. I am bad, a bad cripple. I have a boat load of angry emails telling me exactly how bad and bitter I am. I also am subjected to nasty comments on a regular basis when I assert my civil rights. You see I am not a doormat. I do not like it when people think I am physically and cognitively disabled. I can read a menu thank you very much. I can get in and out of my car all by myself. This is not "amazing" and I dislike being stared at when I doing I am in the process of transferring in and out of the car (kids who watch me get a free pass--they are just curious). I am insulted when a stranger accosts me and tells me "I would rather be dead than paralyzed". Gee thanks for sharing. I resent when I go out to eat that I am seated in the back at the worst possible table. I refer to this as the cripple table. I get angry when bus lifts and elevators are broken for weeks at a time. I have no hesitation asserting my rights when airline employees are determined are point blank rude.
I am not alone. We bad cripples are multiplying at an astonishing rate. Why we bad cripples even marry, divorce, and have children. And yes, I have brain washed my son into thinking I share the same civil rights as the bipedal hordes that populate the country. Don't call child protective services. It is too late he is an adult. Be forewarned there are others like me. Mike Ervin who writes at Smart Ass Cripple is one sarcastic son of a bitch who makes me laugh on a regular basis. And I discovered another bad cripple today. Good God it is an epidemic! Lock up the children. Check in on Grandma and Grandpa. Lock down the schools. We are breeding! Sex? Oh no, you bad cripples are not just bad but sexual beings. Yuck, that's gross. For the record I have had sex once. I did so because I wanted a son. I promise I did not enjoy it. All sexual thoughts have been expunged from my mind.
So who is this bad person I discovered? She is Andrea Chandler. A crippled Quaker. Try saying that fast ten times. She is married too. And she has pets! Wow, she is amazing! Pets, yikes she can do it all. Chandler wrote a gust post at Feminist Sonar hosted by Elas E. Sjunneson-Henry. And yes Sjunneson-Henry is bad too. She might even be badder than me! She is a disability studies scholar and activist and burlesque historian. Come on break out the strippers. And to think I thought my interest in body art and modification was different. Back to Chandler. She wrote a great post in April titled "The Dog & Cripple Show is NOT Open for Business". See http://feministsonar.com/2013/04/the-dog-cripple-show-is-not-open-for-business/ In part this is what Chandler wrote:
Gentle readers, I was not a cheery and inspiring ray of sunshine before I became disabled. Why would I become one now? Not that I have any particular animus for the Good Cripples among us merely for being Good Cripples. You do you, brothers and sisters. What raises my blood pressure every time is when people try to lecture me (or another angry cripple) about why we, too, should be Good Cripples.
These evangelists never, ever suggest that maybe non-disabled people should get a fucking grip on their curiosity, exercise some self control, and not ask for in-depth details on how crippled bodies work. The evangelists never point out that any non-disabled human being over the age of 5 has learned that sometimes you don’t get your curiosity satisfied, you don’t get to touch something just because you want to, and that some questions are rude. No, these people just make constant demands for people with disabilities to turn themselves into traveling teachable moments, as if we have no right to boundaries, to privacy. As if we have no right to decide who can touch us when, or what information we want to share with total strangers.This is, not to put too fine a point on it, bullshit. When it’s another crip telling me to stop being a bad cripple, it’s depressing bullshit. There are millions of people with disabilities in the world, which means there are millions of ways of being disabled, all of them valid. What works for me, or for you, does not necessarily work for anyone else. Our bodies and lives are too different. If you want to be a Good Cripple, knock yourself out. We all have the right to decide when, where, and who we will educate, and how much information we will share while doing so. Being disabled does not magically negate my basic human right to decide these things. Being crippled does not put anyone under an obligation to lay themselves bare for the idle curiosity of strangers.
Asserting your right to boundaries, to be addressed politely, to not answer questions about your body, demanding that others treat you with basic respect for your humanity, none of these things makes you a bad person or a bad cripple. Being happy to stop and educate every single person who wants to quiz you doesn’t make you a bad person, either. But when you evangelize, when you lecture me and wag your finger about how awful I am that I just want to run my errands and get home without it becoming a two hour dog-and-cripple show, well. That, gentle readers, makes you an asshole.
I want to make it clear here and now I have never called anyone an asshole on this blog. I will confess the thought has crossed my mind more than once but I have refrained from putting this in writing. These are heady days for me since I asserted that I am not a bitter man. Why some kind readers even felt compelled to tell me it is okay to be bitter. I cannot and will not embrace the mantle of bitterness. I am content to be angry. I am content to assert my civil rights even if most bipedal people have no clue civil rights and disability rights are one in the same. I am not bothered when I am angrily told I have a chip on my shoulder. I will confess though I do not like it when I am called a "fucking asshole". I guess not everyone loves me. This week it was amply demonstrated I am not alone. In the future hordes of bad and bitter cripples will create a social revolution. Ramps and accessible buses will abound. Every house from coast to coast will be modified. We will out law steps and require every American to learn and become fluent in ASL (American Sign Language). Obviously this makes bad bitter cripples communists--bi-lingual education is communistic; J. Edgar Hoover said so. We will also revolutionize health care and, gasp, endorse a nationalized health care system. This puts us on double super probation with the FBI. We will even require taxis to be accessible much to the horror of Mayor Bloomberg. We will advocate pot be made legal too in a nod to our hippie past. Why there is no end to the evil will create. You bipedal people have been warned!
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Monday, June 3, 2013
Bitterness: A Flawed Concept
In recent months I have noted an increase in the number of people that deem me bitter. People with a disability and people without a disability have levied this charge. I find this extremely frustrating and proof positive I have failed. My words, often pointed, have been misunderstood. This failure is particularly troublesome because it has been consistent; thus I have consistently failed to make myself clear. I was up late last night thinking about why; why have I been characterized as bitter? It is the last word that I would use to describe myself. I am extremely content with my life. I am content with my aging body. Life, I am happy to report, is good. Almost too good in fact. So as I puttered around my house I did what I often do when perplexed. I reorganized my books and came to the conclusion the charge I am bitter rests upon two important variables. First a simplistic understanding of disability and secondly the utter failure to consider disability rights to be equivalent to civil rights.
The above small epiphany came to me when I came across Simi Linton's important book Claiming Disability. I know Linton's work well but it was the foreward to her book by Michael Berube that hit home last night. Berube Wrote: "If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy." The key words here are "shapes public life and public policy." Disability does not exist in splendid social isolation. Disability is about much more than a given physical or cognitive deficit. Disability is not about a personal reaction to a disease or impairment. Disability is a social problem--an observation I have made many times. But this is not what the public at large sees. The public's understanding of disability is too often based on ignorance, assumed or unrecognized bias, and discriminatory social policies. We people with a disability are too often out of sight and out of mind. Our physical and social environment is not constructed to be inclusive. Yes, lip service is paid to the ADA and it is begrudgingly followed. In reality, few people without a disability give a damn about the disabled. Our lives are not valued. Our existence is deemed a costly burden (think Peter Singer). Add in a healthy dose of fear, we are the only minority group one can join in an instant, and the social reaction to the presence of a person with a disability is too often toxic. This skewed social response is called ableism, a concept I am very familiar with. Ableism, as described on the blog Bastard: Musing of Yet Another Bitter Cripple, is "the set of social practices that I am met with when I venture outside the door of my home. It is not something most people would admit they adhere to, it is much more subtle than that. I am automatically met with a number of assumptions – very often unconscious ones – that lead to me being treated in a way different from everyone else. And the kicker here is that these assumptions are based both on my actual disability as well as presumptions about my disability that only live in their head. See: http://disabilityrightsbastard.wordpress.com/2013/04/23/ableism-and-internalized-ableism/
The penchant to classify people with a disability as bitter has and will continue to be levied. Nothing will change until ableism is acknowledged to exist. As of today, this concept is virtually unknown. It is simply not taught. When I have tried to use the word people look at me with a puzzled expression. When I use the word ableism and see the veritable light bulb go off in the minds of others I will know the social revolution I have dreamed of has taken place. This leads me to my second and final point. Few people understand or frame disability in terms of civil rights. At times when I link disability rights and civil rights some people will roll their eyes and think this is political correctness run amuck. When I compare disability rights with racial intolerance or women's rights some people react angrily. More than once I have been told framing disability in a civil rights framework is "utter bull shit". It is very hard to find a constructive way to respond to such an emotional reaction. Again, last night I wondered why; Why do people have such a knee jerk reaction? It dawned on me we associate civil rights with classes or groups of people that share a common bond. That bond is called identity. As an anthropologist I know a lot about identity. It is a concept central to the field. I have written about identity in various posts over the last few years. In September 2011 in a post entitled Identity and Disability I wrote identity:
is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.
The concepts I have discussed are as subtle as they are complex. It takes much thought and requires one to dismiss or disregard most if not all of what has been assumed or learned that pertains to the lives of people with a disability. Thus when I point out a given access failure or discuss the down side to feel good stories about disability I am quickly labeled bitter. When I question why an elevator has been broken for six months I am bitter. When I point out a bus with a broken lift cannot by law be put into service I am bitter. When I question why a school district transports every child with a disability to and from school in a single short bus I am bitter. When I point out my rights as a passenger on a plane or train violate federal law I am bitter. But really think about it. What am I bitter about? Not one thing. I do however feel one primal emotion: anger. I do not rant and rave. I rarely lose my temper. I am exceedingly polite in fact. I use my anger in a calm and reasoned way. I often note that it has been over twenty years since the ADA was enacted and yet civil rights violations abound as do needless physical barriers. I think twenty-three years is more than enough time to correct the social and physical barriers that exist. This line of reasoning makes people very uncomfortable. Instead of addressing the problem, either social or physical, it is far easier to rely on a knee jerk and antiquated notion of disability. You are bitter. Your bitterness is the problem. Not verbalized is the belief equal access is a choice. A kindness. I am not grateful for the largesse of society and that I am literally biting the hand that feeds me. Um, sorry but no. I have the share the same civil rights of every bipedal or typical American. I am pointing out that various long standing federal laws are being broken. I can assure you bitterness does not figure into the equation.
The above small epiphany came to me when I came across Simi Linton's important book Claiming Disability. I know Linton's work well but it was the foreward to her book by Michael Berube that hit home last night. Berube Wrote: "If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities”. And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy." The key words here are "shapes public life and public policy." Disability does not exist in splendid social isolation. Disability is about much more than a given physical or cognitive deficit. Disability is not about a personal reaction to a disease or impairment. Disability is a social problem--an observation I have made many times. But this is not what the public at large sees. The public's understanding of disability is too often based on ignorance, assumed or unrecognized bias, and discriminatory social policies. We people with a disability are too often out of sight and out of mind. Our physical and social environment is not constructed to be inclusive. Yes, lip service is paid to the ADA and it is begrudgingly followed. In reality, few people without a disability give a damn about the disabled. Our lives are not valued. Our existence is deemed a costly burden (think Peter Singer). Add in a healthy dose of fear, we are the only minority group one can join in an instant, and the social reaction to the presence of a person with a disability is too often toxic. This skewed social response is called ableism, a concept I am very familiar with. Ableism, as described on the blog Bastard: Musing of Yet Another Bitter Cripple, is "the set of social practices that I am met with when I venture outside the door of my home. It is not something most people would admit they adhere to, it is much more subtle than that. I am automatically met with a number of assumptions – very often unconscious ones – that lead to me being treated in a way different from everyone else. And the kicker here is that these assumptions are based both on my actual disability as well as presumptions about my disability that only live in their head. See: http://disabilityrightsbastard.wordpress.com/2013/04/23/ableism-and-internalized-ableism/
The penchant to classify people with a disability as bitter has and will continue to be levied. Nothing will change until ableism is acknowledged to exist. As of today, this concept is virtually unknown. It is simply not taught. When I have tried to use the word people look at me with a puzzled expression. When I use the word ableism and see the veritable light bulb go off in the minds of others I will know the social revolution I have dreamed of has taken place. This leads me to my second and final point. Few people understand or frame disability in terms of civil rights. At times when I link disability rights and civil rights some people will roll their eyes and think this is political correctness run amuck. When I compare disability rights with racial intolerance or women's rights some people react angrily. More than once I have been told framing disability in a civil rights framework is "utter bull shit". It is very hard to find a constructive way to respond to such an emotional reaction. Again, last night I wondered why; Why do people have such a knee jerk reaction? It dawned on me we associate civil rights with classes or groups of people that share a common bond. That bond is called identity. As an anthropologist I know a lot about identity. It is a concept central to the field. I have written about identity in various posts over the last few years. In September 2011 in a post entitled Identity and Disability I wrote identity:
is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.
The concepts I have discussed are as subtle as they are complex. It takes much thought and requires one to dismiss or disregard most if not all of what has been assumed or learned that pertains to the lives of people with a disability. Thus when I point out a given access failure or discuss the down side to feel good stories about disability I am quickly labeled bitter. When I question why an elevator has been broken for six months I am bitter. When I point out a bus with a broken lift cannot by law be put into service I am bitter. When I question why a school district transports every child with a disability to and from school in a single short bus I am bitter. When I point out my rights as a passenger on a plane or train violate federal law I am bitter. But really think about it. What am I bitter about? Not one thing. I do however feel one primal emotion: anger. I do not rant and rave. I rarely lose my temper. I am exceedingly polite in fact. I use my anger in a calm and reasoned way. I often note that it has been over twenty years since the ADA was enacted and yet civil rights violations abound as do needless physical barriers. I think twenty-three years is more than enough time to correct the social and physical barriers that exist. This line of reasoning makes people very uncomfortable. Instead of addressing the problem, either social or physical, it is far easier to rely on a knee jerk and antiquated notion of disability. You are bitter. Your bitterness is the problem. Not verbalized is the belief equal access is a choice. A kindness. I am not grateful for the largesse of society and that I am literally biting the hand that feeds me. Um, sorry but no. I have the share the same civil rights of every bipedal or typical American. I am pointing out that various long standing federal laws are being broken. I can assure you bitterness does not figure into the equation.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Sunday, June 2, 2013
Perspective Helps
Yesterday I was miserable. Today is much better. Not normal but close to it (or what passes for normal when one is paralyzed). Regardless, I take the New York Times to task when it comes to disability rights and for good reason. But once in a while the NYT hits a veritable home run. Yesterday was one of those days. The below editorial was in the NYT yesterday June 1. I have taken the liberty of quoting it in full below.
A United Nations report, “The State of the World’s Children,”underscores the moral bankruptcy of Senate Republicans who blocked ratification of a treaty to help disabled people around the world. There is scant data on how many children have such disabilities or how their lives are affected. One outdated estimate is that some 93 million children, one in 20 of those 14 or younger, live with a moderate or severe disability of some kind. The issue is how they might be helped to overcome their disabilities and become productive members of their societies.
Today's Editorials
Editorial: A Failure to Police Chemical Plants (June 2, 2013)
Editorial: Restoring the Vote in Virginia (June 2, 2013)
Editorial | Notebook: After Years of Progress, a Setback in Saving the Wolf (June 2, 2013)
Editorial | Notebook: ‘Hamlet’ Meets ‘The Hangover’ (June 2, 2013)
A United Nations convention would ban discrimination against persons with disabilities and accord them the same rights as those without disabilities. It has been ratified by 127 countries and the European Union. President Obama has signed it, but, in December, the Senate, though supporting the convention by a hefty 61 to 38, fell five votes short of the two-thirds majority needed for ratification.
This was mostly because Senate Republicans caved in to far-right ideologues who contended, erroneously, that the convention would infringe on American sovereignty, usher in socialism, and allow United Nations bureaucrats to prohibit home-schooling or wrench disabled children from their parents’ arms.
The new United Nations report finds that children with disabilities are the least likely to receive health care or go to school and are among the most vulnerable to violence, abuse and neglect, especially if they are hidden away in institutions because of social stigma or parental inability to raise them.
The disabled children and their communities would benefit if the children were accommodated in schools, workplaces, vocational training, transportation and local rehabilitation programs — and if all countries ratified the convention and a related convention on the rights of children.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Saturday, June 1, 2013
A Bad Day: Suggestions Welcome
Last night or early this morning depending on one's perception of time my atypical paralyzed body began misbehaving. This is the worst my body has felt in over twenty years. Like many people with a spinal cord injury, I experience, mild, moderate, and severe spasms. The variation in my spasticity ranges wildly and my legs always have a lot of tone. Over time I have learned to adapt and use my spasticity. I also know what makes my spasticity increase or decrease. Cold, think icy temperatures, and movement help the most. I am most comfortable outdoors moving in the cold. Skiing is awesome as is any outdoor activity such as hiking or kayaking. At the opposite side of spectrum heat and a lack of movement sharply increase my tone and spasticity. Regardless of the day I need to move. I cannot be sedentary for too long. This is not good for an academic but as I wrote I have adapted.
Today has been bad and I am truly miserable. For the last seven or eight hours my right hip where my wound was is on fire. Obviously I checked my skin; it is fine. My legs are in near total spasm. My feet are arched up at a strange angle. I have severe rolling spasms in my torso. They run up and down my stomach in waves--nonstop waves since about 3:30AM. It is creepy to watch my stomach. It reminds me of when my wife was near to giving birth to my son. Her entire belly could change shape. I truly hate the sensation and spasms in my stomach. I cannot eat or drink without feeling sick. At this point I am very sore. My back hurts because I cannot sit normally. Muscles that are not normally taxed are being taxed in the extreme. My over developed lats are tight as a drum. I tried all the little tricks paralyzed people learn over time to decrease my spasms. I took an ice cold bath. Did not work. I took a very cold shower. Did not work. I went for a walk with Kate over bumpy terrain. Did not work. I pushed over grass and through an outdoor sprinkler. Did not work. I cannot drink alcohol because it is too hot and will only make me feel sick. I put cold ice wrapped towels on and off my legs. Did not work. Forget medication. I took baclofen for years--the go to drug for spasticity. I am not sure which was more trouble--spasticity or baclofen. Most other medications for spasms are largely ineffectual. I should amend that statement; most legal medications are ineffectual. Pot as many people can attest has a profound impact on spasticity. My legs turn to butter if I smoke pot. It is really amazing the instant impact pot has on spasms. The problem is pot is not legal in New York. I will not break the law. With my luck I will light up a joint (as if I could find one) and the local cops will drive by. The world has little sympathy for middle aged white men in suburbia who smoke dope. I cannot and will not take the risk. I support the effort to legalize pot but that is another story entirely.
Here I sit in a weird situation that demonstrates what we know about neurology, specifically spasticity, can fit into a thimble. How can one create a drug for spasticity when it ranges wildly from person to person. Spasms are unpredictable and today have pretty much precluded me from getting anything done. I have modest wishes now--I just want the stomach spasms to lessen. They bother me and can even make breathing uncomfortable if they extend up to the peak of my level of paralysis. This has happened a few times in the last few hours. In short, I am a mess. Spasms suck. Yup, that is my Ivy League PhD level of analysis. Spasms suck. So anyone with any ideas, legal ideas, I am all ears.
I do have one idea. A big walk in freezer might help relieve my spasms. This raises my level of desperation to a new level and creates a strange possible social dynamic. Can you imagine this? I walk into BJs or Costco and ask to see the manager. Some poor over worked guy will ask what can I do for you. So there I am in shorts and a t-shirt. Can I go into your walk in freezer for an hour or so to relieve my spasticity? I am not sure what the reaction would be but I would wager my request would be a first.
Today has been bad and I am truly miserable. For the last seven or eight hours my right hip where my wound was is on fire. Obviously I checked my skin; it is fine. My legs are in near total spasm. My feet are arched up at a strange angle. I have severe rolling spasms in my torso. They run up and down my stomach in waves--nonstop waves since about 3:30AM. It is creepy to watch my stomach. It reminds me of when my wife was near to giving birth to my son. Her entire belly could change shape. I truly hate the sensation and spasms in my stomach. I cannot eat or drink without feeling sick. At this point I am very sore. My back hurts because I cannot sit normally. Muscles that are not normally taxed are being taxed in the extreme. My over developed lats are tight as a drum. I tried all the little tricks paralyzed people learn over time to decrease my spasms. I took an ice cold bath. Did not work. I took a very cold shower. Did not work. I went for a walk with Kate over bumpy terrain. Did not work. I pushed over grass and through an outdoor sprinkler. Did not work. I cannot drink alcohol because it is too hot and will only make me feel sick. I put cold ice wrapped towels on and off my legs. Did not work. Forget medication. I took baclofen for years--the go to drug for spasticity. I am not sure which was more trouble--spasticity or baclofen. Most other medications for spasms are largely ineffectual. I should amend that statement; most legal medications are ineffectual. Pot as many people can attest has a profound impact on spasticity. My legs turn to butter if I smoke pot. It is really amazing the instant impact pot has on spasms. The problem is pot is not legal in New York. I will not break the law. With my luck I will light up a joint (as if I could find one) and the local cops will drive by. The world has little sympathy for middle aged white men in suburbia who smoke dope. I cannot and will not take the risk. I support the effort to legalize pot but that is another story entirely.
Here I sit in a weird situation that demonstrates what we know about neurology, specifically spasticity, can fit into a thimble. How can one create a drug for spasticity when it ranges wildly from person to person. Spasms are unpredictable and today have pretty much precluded me from getting anything done. I have modest wishes now--I just want the stomach spasms to lessen. They bother me and can even make breathing uncomfortable if they extend up to the peak of my level of paralysis. This has happened a few times in the last few hours. In short, I am a mess. Spasms suck. Yup, that is my Ivy League PhD level of analysis. Spasms suck. So anyone with any ideas, legal ideas, I am all ears.
I do have one idea. A big walk in freezer might help relieve my spasms. This raises my level of desperation to a new level and creates a strange possible social dynamic. Can you imagine this? I walk into BJs or Costco and ask to see the manager. Some poor over worked guy will ask what can I do for you. So there I am in shorts and a t-shirt. Can I go into your walk in freezer for an hour or so to relieve my spasticity? I am not sure what the reaction would be but I would wager my request would be a first.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Friday, May 31, 2013
How Far Does Being Nice Get You?
The answer to the title of this post is not far. Why do you have to be such a hard ass all the time is a common question posed by people who read my blog. Recently I have been getting a lot of this type of email and similar comments on various posts. I struggle to answer this question. The why are you a hard ass question I get. I am a hard ass in many ways and I do my best to respond. Those readers who angrily maintain I am a bitter asshole are just wrong. The people that level this charge utterly miss the point of my writing. I suspect I am deemed a bitter asshole because I do not aspire to be "normal". I also have nothing nice to say about the cure industry. My lack of interest in normality and cure makes me persona non grata in the estimation of some. As to anger, I plead guilty. I am angry 35 years post injury. My anger has not one thing to do with my body. My anger is not directed at any single individual or biased organization. I direct my anger outward in a healthy and what I hope is a constructive manner. I am angered by injustice, social and economic inequity, and the violation of civil rights. I am angry people with a disability twenty plus years after the ADA still encounter needless social and attitudinal barriers. My anger is never about me. My anger is designed to do one thing: prompt social change in terms of disability rights so the next person with a disability does not experience the same level of discrimination I did. Like Ed Roberts, I see nothing wrong with anger. When channeled in an appropriate direction anger can change the fabric of society. Look what MADD (Mothers Against Drunk Driving) has accomplished, a movement that was started by angry mothers whose children tragically died. Within disability rights a few angry activists in Denver spawned a national movement to get lifts on buses. Fast forward to today: I easily (albeit slowly) board a bus and navigate New York City. A few angry activists in Denver are responsible for sweeping change that has benefited millions of people nationwide.
Readers who think I could be nicer have a point. I suppose it is possible to be too cranky. So in an effort to be not such a bad cripple I will write something nice. Over the last two years or so I have occasionally seen the name of a paralyzed woman Carolyn Pioro. Ms. Pioro was a circus performer and competitive athlete until she fell from a flying trapeze and experienced a spinal cord injury. She is a quadriplegic. When I read about Pioro, it was usually with reference to fashion. As someone with a body that is extremely crooked finding clothes that do not need tailoring is not easy. Hence I look at clothing websites that are designed for people with a disability. My search has not as yet resulted in any good finds. But I did come across Pioro's name who struck me as a smart woman. Ms. Piorio is an attractive and fashionable young woman who seems to have a great sense of style post injury. I know nothing about fashion though I suspect it is difficult for women to find fashionable wheelchair appropriate clothing Regardless, this is where my knowledge of Pioro began and ended until yesterday.
At Bloom, an interesting website about disability, had a short post about Pioro on May 27 (http://bloom-parentingkidswithdisabilities.blogspot.com/2013/05/i-have-to-let-go-of-my-past.html ). Ms. Pioro is giving a talk in Toronto June 6. The title of Pioro's talk is "I Have to Let Go of My Past". This notice led me to read an excellent essay by Pioro in Chatelaine (http://www.chatelaine.com/living/real-life-stories/carolyn-pioro-on-life-after-a-devastating-spinal-cord-accident/). Pioro gives a gripping account of her accident in 2005. What struck me was not the circumstances of her injury but her reaction to it. In a section entitled Enforced Isolation Pioro wrote after her injury:
I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.
Pioro went on to note she permitted only six visitors:
Those six amazing people from my innermost circle came to see me, bringing comfort and normalcy with each visit. My dad would read me the newspaper; my mom applied hand lotion, as the rough calluses I had built up were beginning to disappear. My most loyal friend from work, David, would come in twice a day and talk about the goings-on at the restaurant and really just anything, even something as trivial as his neighbour stealing his garbage bins. Since the breathing tube still made it impossible to speak, having someone to listen to, someone to sit beside me, was exactly what I needed.
Readers who think I could be nicer have a point. I suppose it is possible to be too cranky. So in an effort to be not such a bad cripple I will write something nice. Over the last two years or so I have occasionally seen the name of a paralyzed woman Carolyn Pioro. Ms. Pioro was a circus performer and competitive athlete until she fell from a flying trapeze and experienced a spinal cord injury. She is a quadriplegic. When I read about Pioro, it was usually with reference to fashion. As someone with a body that is extremely crooked finding clothes that do not need tailoring is not easy. Hence I look at clothing websites that are designed for people with a disability. My search has not as yet resulted in any good finds. But I did come across Pioro's name who struck me as a smart woman. Ms. Piorio is an attractive and fashionable young woman who seems to have a great sense of style post injury. I know nothing about fashion though I suspect it is difficult for women to find fashionable wheelchair appropriate clothing Regardless, this is where my knowledge of Pioro began and ended until yesterday.
At Bloom, an interesting website about disability, had a short post about Pioro on May 27 (http://bloom-parentingkidswithdisabilities.blogspot.com/2013/05/i-have-to-let-go-of-my-past.html ). Ms. Pioro is giving a talk in Toronto June 6. The title of Pioro's talk is "I Have to Let Go of My Past". This notice led me to read an excellent essay by Pioro in Chatelaine (http://www.chatelaine.com/living/real-life-stories/carolyn-pioro-on-life-after-a-devastating-spinal-cord-accident/). Pioro gives a gripping account of her accident in 2005. What struck me was not the circumstances of her injury but her reaction to it. In a section entitled Enforced Isolation Pioro wrote after her injury:
I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.
Pioro went on to note she permitted only six visitors:
To me, this is a perfectly logical way to handle a sudden paralyzing injury. Establish medical stability. Allow precious few people to visit while hospitalized and as the body heals consider how one can move forward. There was no talk of cure or suicide. She was forward thinking at a time of great stress and angst. And Pioro did what I did as do the vast majority of people who experience a devastating spinal cord injury. She worked hard and learned. She learned how to direct her care. She learned how to instruct people to do mundane things such as dress her, clean her body, brush her teeth and manage her bowel and bladder routine. She learned how to use a head controlled wheelchair. None of this is easy and like countless others realized what it is like to live with a life long disability. Unlike in the United States, Pioro received extensive rehabilitation (eight months). She was I assume well prepared for life with a spinal cord injury. Reality hit home ten months after her injury. She moved into an assisted living residence. This sounds nice. It was not. She wrote:
in reality, a sketchy high-rise building — plagued with violence, drug dealing, bedbugs and cockroaches. There I received 24-hour assistance from a staff of personal-support workers. I met a handful of remarkable women who really did ‘get’ the job and were genuinely helpful. Unfortunately, they were not the norm. The rest treated my apartment solely as their workplace and me as an inconvenience that got in the way of their watching The View.
One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.
One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.
Welcome to the world of disability. What a shock this is; not one's disability but the social and practical reaction to it. This is a staggering fall in terms of how others value your existence. It can be and is too often a crushing experience. An untold number of lives have been destroyed. It takes great inner strength and depth of character to know others, in some cases highly educated others, believe your life has no value. Worse, your existence is an economic drain on the system and people that experience such a devastating injury should die. Paging Peter Singer.
The best part of the essay was the closing section, Hope By Degrees.
What hope is there for me and the estimated 86,000 Canadians living with a spinal cord injury? Medical advancements are being made, but there’s still so far to go. I would be lying if I told you I’m not gutted by the fact that my dad is never going to walk me down the aisle; I’ll never hold a niece or nephew or measure my hand against my mom’s as we used to do. Would I trade my human soul for working cyborg parts? In a mechanical heartbeat, yes. I've lost a lot of friends since the accident, certainly not because they’re cruel and unkind, but our lives are just so very different now. I’m often asked — rather incredulously — how it is that I wish to succeed in digital journalism and publishing, yet I don’t even have a Facebook account. Although I think Facebook is an incredibly useful tool for all facets of media, for me personally it’s not a good fit. How best to describe what it’s like lurking on Facebook? It feels as though my lungs are slowly filling with warm water, and I’m drowning. I’m reminded of how old friends and ex-boyfriends are travelling, getting married, having babies and living out their lives in ways I had assumed I would. To stay afloat and to have a future, I have to let go of my past.
For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write... You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.
For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write... You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.
I deeply regret the fact I will not be able to attend Pioro's talk. For me, 35 years post injury it brings me great joy that people like Pioro get it. Getting it means life before and after spinal cord injury is radically different. Life is not better or worse but rather just a continuum of expereinces. One could compare a spinal cord injury to other life changing events: marriage, becoming a parent, getting divorced, or death. All are life altering events that require to some degree a complete and radical reinvention of the self (I use self in a Goffmanesque way). For those that experience a spinal cord injury, the reinvention process after injury is highly visible and accompanied by a stigmatized identity. It is not the disability itself that is a shock to the system but rather the social response to a paralyzed body. I failed to understand the stigma associated with disability in 1978. I fail to understand stigma in 2013. Forty years of progressive legislation and social advancement and I still find myself educating people about disability. Some days I am inspired to change the world one person at a time. Other days, an ordinary day like today, I will not leave my home because I simply cannot face the a hostile world. Thankfully these bad days are rare and my labrador Kate is thrilled to have me all to her own.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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