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. 

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.

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! 

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.  

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.

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.