In recent weeks I have been re-energized. The Fall is my favorite time of year. The crisp air, fall colors, and knowledge ski season is around the corner has me waking up well before the sun comes up. I mostly read when I get up and the other day I looked forward to reading a new publication, Life in Action. Edited by Ian Ruder, Life in Action replaces SCI LIfe and Action, publications of the NSCIA and United Spinal Association. I am not sure what to make of Life in Action. One could argue it is a bad time to launch a new print media publication. On the other hand, I assume the two organizations will share the cost of publication and have in reality eliminated one print media publication. Regardless, I will read Life in Action with interest. I think the publication is for those new to spinal cord injury and those in the business of rehabilitation--particularly spinal cord injury. I base this on the ads and content. Large full page ads for prestigious rehabilitation hospitals abound as do ads for durable medical goods.
Life in Action is a perfect publication to leave in the waiting room at a rehabilitation hospital. If one wanted to tap into what is going on at this moment in spinal cord injury this is the publication to read. National in scope, there are many photos of smiling paralyzed people doing a variety of activities. This must be heartening to a newly injured person and his or her family. I can readily imagine a person who knows nothing about spinal cord injury being encouraged and empowered to tap into the vibrant adaptive community. All this is good but I find myself feeling disconnected from the world of rehabilitation and the newly injured. I guess I am old school--I went through rehabilitation a long time ago, before pretty rehabilitation centers in the suburbs existed. My rehabilitation was hard core. I was told you will never walk again, period and exclamation point. I was told never ask for help by therapists. Independence was key, anything else was frowned upon. The physical environment was depressing in the extreme. Frankly, I was scared to death and worked my ass off to escape from rehabilitation and get to college with my peers. In short, rehabilitation sucked. It was a way station where I could learn how to function independently and move on with life. I have no fond memories of rehabilitation or that time period. Rehabilitation is very different today. It is short--shockingly brief. Thanks to insurance companies a newly injured person once medically stable gets a few weeks of rehabilitation. If they are lucky they get additional out patient therapy. The physical environment has changed too. Many centers are quite pretty. I have mixed feeling about this. I can well imagine these centers are like akin to a haven of acceptance. People may not want to leave and the fear I experienced likely absent. There is nothing like a morbid and physically decrepit environment to motivate people to get out and resume their life.
One blurb and survey results made me feel apart from those recently injured. The survey was conducted by the NSCIA. Over 700 people responded to an inquiry about what they would like to read about future issues. The results were stunning. Radically different from what I would have guessed. The top ten topics people want to read about are as follows:
Assistive Technology
Health/fitness
Cure research
Travel
Access
Advocacy/legislative updates
Recreation
Home modification
Coping tips and strategies
Health care legislation
In a word, wow! No mention of employment or education. Health care legislation is tenth! Cure is third! Home modification is eighth! God luck getting in the door of your own home. I am stunned. Utterly taken aback. I am led to speculate that the above results are heavily skewed by newly injured people. I would also speculate what I call the cure industry has gotten its hooks into the rehabilitation world. A lasting legacy of Christopher Reeve perhaps or maybe a high profit margin in cure?
I can assure you we old timers (hard asses?) think very differently. However, I will concede I may have had similar views circa 1978. What changed and how did my views become radically different? I read Robert Murpy's book The Body Silent. This book changed my life. In one afternoon I realized my problem was not paralysis but the social response it created. Here lies the real problem with the survey results. Who is teaching and guiding the newly paralyzed people about the realities of paralysis and the social stigma associated with wheelchair use? I would venture to guess no one. What can a newly paralyzed person learn in a few weeks of rehabilitation? Not much. I had months of rehabilitation. Over those months I learned any paralyzed person who was cool cut off the handles to his or her wheelchair. I learned how to manage my bowels and bladder--these lessons did not come from nurses or doctors but other paralyzed people. I learned how to drive with hand controls. I figured out how to get dressed and avoid skin breakdowns. I learned folding wheelchairs were crappy, E&J was horrible and to get a rigid frame wheelchair. I learned how to change a tire on my wheelchair. In short, I learned how to live independently. And I learned the most from my fellow paralytics.
Do not think I am glorifying the olden days of rehabilitation. It was very different and by contemporary standards sub basic. People were essentially experimenting and making it up as they went a long. The medical model of disability ruled the day and the concept if disability rights did not exist. In this cultural milieu we newly minted cripples thrived and learned hard life lessons. Foremost among the lessons learned were a fierce independence streak and the ability to assert ourselves. We expected nothing of others, people without a disability, and railed against the social bias we encountered. It is these large and small lessons that I worry newly paralyzed people are not learning. This leads me to make a suggestion I doubt will ever come to fruition. Expose my generation, old timers, and disability activists such as ADAPT and Not Dead Yet to the newly paralyzed. We have much to learn and gain from such a meeting. The disability rights movement will benefit from new ideas of recently paralyzed people. Those of us that have lived with spinal cord injury for decades can speak from experience and perhaps derail problems before they arise. This idea has been present in my mind for a long time. I do not think newly paralyzed are ready for the harsh reality they will encounter in an ableist world. The ADA may be the law of the land but it is rarely followed. Discrimination is rampant and it takes time to learn how to cope with bias. These sort of lessons are well beyond the realm of medical professionals. It is this peer to peer connection that could foster change. Ed Roberts, founder of the independent living movement, knew this and tried to implement it in the 1970s. He called it cripple power. An apt name. I hope to see cripple power rise in my lifetime.
Sunday, September 25, 2011
Thursday, September 22, 2011
Identity and Disability: Part II
Claire Roy who maintains the wonderful blog Life with a Severely Disabled Daughter has thrown down the gauntlet challenging this bad cripple about identity. If you have not read her blog I urge you to do so. She writes with great passion and I admire her work. I am happy to engage her here in large part because she poses an excellent question. Specifically, she wonders how issues of identity “relate to my daughter and others like her… those with severe intellectual and physical disabilities”. Roy writes that the slogan “disabled and proud” does not resonate for her daughter who cannot express herself and is entirely dependent upon others. Roy is blunt in her assessment of her daughter’s condition noting, “if it was possible to fix it, we would… fuck identity”. Obviously no one wants to have a permanent disability—myself included. For those of us with an obvious physical deficit it is our most identifiable feature. But Roy wonders is this identity. In a word no.
Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal—meaning typical cognition and typical physical ability. We people with a disability were rendered powerless—the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.
Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make—when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick.
In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written—the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy’s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.
Identity in terms of disability is not defined by a medical diagnosis. Disability cannot be defined by labels such brain damage or spinal cord injury nor socially imposed categories of existence. This harkens to a medical model of disability that for decades determined the identity and roles millions of people with a disability had. The focus here was not on what a person with a disability could do but rather on their physical and mental limitations. By framing the person with a disability within the realm of pathology or limitations disability was individualized. It was a personal problem unique to themselves. This voided any possibility of systemic social analysis. The phrase divide and conquer seems apt. Disability was thus perceived only in relation to normal—meaning typical cognition and typical physical ability. We people with a disability were rendered powerless—the symbolic and real life opposite of the norm. This unacknowledged belief system was the organizing principle for decades. It led to special schools, reliance on institutional care and its modern equivalent group homes. Separate when it came to disability was socially acceptable.
Obviously I reject the medical model and instead embrace an identity that incorporates my disability (here I am leaving aside a discussion of the social model of disability). Some people with a disability can be proud of their disability in the sense it has formed who they are as a person. Here is the fundamental leap people need to make—when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick.
In challenging disability as identity Roy has led me to think widely on the meaning of disability and how it has evolved in the last two decades. This in turn led me to think about the two of the more controversial articles I have written—the first about Christopher Reeve and the other about growth attenuation known at the time as the Ashley Treatment. When I published these articles some of the responses I received via email were overwhelmingly negative. By negative I mean verging on hate mail. This took me aback until I realized I was questioning the accepted social order. As a close friend put it, no one likes to have his or her parade pissed on. And this in part is the problem with an identity tied to disability. As I see it, there is nothing wrong with being disabled and I mean this in the broadest sense of the term. When I see some like Roy’s daughter I see a hard assed survivor utilizing her cognitive abilities as best she can. When I see a man or woman who is blind with a guide dog, I think that is a cool form of adaptation. When I see a quadriplegic in a power wheelchair I think how fast and how far can they go. When I see deaf people signing I admire the beauty and grace of a language I do not know. I see varying forms of identity that is tied in some way to their unique abilities. All I see are endless possibilities. To me this is an identity all people with a disability share.
Wednesday, September 21, 2011
Identity and Disability
The below was inspired by Rachel Cohen-Rottenberg who maintains a blog I read on a regular basis entitled Journeys with Autism.If you have not read her work I urge you to visit her blog. Rachel asked me to write a guest post in September. I chose the topic, identity because it is a central concept in anthropology and key to social progress for people with a disability. Please note I finished the post a full nine days before the end of the month.
Identity and Disability
I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.
I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It 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.
So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability Michael Berube noted:
"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."
Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a “chip on my shoulder”. When told this I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:
"People have a great deal of prejudice about autism& other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."
I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.
Identity and Disability
I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear--my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environment are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.
I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It 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.
So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability Michael Berube noted:
"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."
Like most people, disabled and non disabled, I did not always think this way. Disability is afterall the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression when we confront others and assert ourselves we are classified as bitter. I am routinely told I have a “chip on my shoulder”. When told this I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder than I plead guilty. This takes some guts, we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:
"People have a great deal of prejudice about autism& other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com)."
I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability. Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.
Saturday, September 17, 2011
Handicap Parking: Passive Aggressive
I have written about handicap parking in the past and the subject always generates a strong response. Since I got sick a year ago I have resumed using handicap parking. Frankly, I need handicap parking now. When I first started getting up and around I could not go too far without becoming short of breath. Yes, I was in that bad of shape. In recent weeks I have been wondering why I still use handicap parking. I am constantly infuriated with those who use handicap parking. The vast majority that use these much sought after spots appears to have no reason for using them. But I know all too well appearances can be deceiving. A double or single amputee could walk out of his or her car and I would have no clue they were an amputee. Of course the population that garners virtually all handicap spots are elderly. More power to them as there is no question that the elderly struggle with mobility. Of course this does not stop my son from calling handicap parking old people parking. His tone is humorous but has an edge I do not like. I never comment about any use of handicap parking spots. I know the little blue placards in NY and other states are grossly abused. I know this angers the police. Heck, it angers me! However, I am resigned to rampant abuse. My only wish is doctors that sign off on handicapped parking permits would put more thought into the process.
I was thinking about why I get angry about handicapped parking. I realized after some reflection only two things bother me. In the winter handicap parking is where they pile the snow after a storm. I know for a week or two handicapped parking will be useless. Nothing can be done about this. Annoying yes but very temporary inconvenience. But what really gets me are shopping carts. Yes, shopping carts. Handicap parking is where shoppers abandon their carts. I see this every time I go out. Abandoned carts often block one from parking or make it impossible to get out of the car. Much to my son's chagrin I have developed a passive aggressive mechanism for dealing with carts. I will park in the one cart free spot, get out of my car and push the cart or carts into non handicap parking spots. I get a giggle out of this every time. How petty I am. My son thinks I am acting out in a bizarre or useless manner. He is mostly correct. However once in a while someone will ask why I am moving the carts where they will obviously block a spot. I tell them I found the carts in handicap parking and they were in the way. A few people will get the message I am seeking to deliver anonymously. In sharp contrast, some people actually get mad at me--not often for sure. Most people, like my son, think it is odd behavior. I suppose it is. I also suppose it is petty. But it still gives me a sense of satisfaction. I am convinced people who are observant will get the message I am seeking to deliver. And that is all I am trying to do--get a select few people to think. Handicapped parking is a ubiquitous aspect of every day life few give any thought. We people with a disability think about the violation of handicapped parking and find it unacceptable. It is a minor inconvenience that indicates a much larger problem. The routine violation of our civil rights. Handicapped parking is very minor but indicative of a much larger cultural problem.
I was thinking about why I get angry about handicapped parking. I realized after some reflection only two things bother me. In the winter handicap parking is where they pile the snow after a storm. I know for a week or two handicapped parking will be useless. Nothing can be done about this. Annoying yes but very temporary inconvenience. But what really gets me are shopping carts. Yes, shopping carts. Handicap parking is where shoppers abandon their carts. I see this every time I go out. Abandoned carts often block one from parking or make it impossible to get out of the car. Much to my son's chagrin I have developed a passive aggressive mechanism for dealing with carts. I will park in the one cart free spot, get out of my car and push the cart or carts into non handicap parking spots. I get a giggle out of this every time. How petty I am. My son thinks I am acting out in a bizarre or useless manner. He is mostly correct. However once in a while someone will ask why I am moving the carts where they will obviously block a spot. I tell them I found the carts in handicap parking and they were in the way. A few people will get the message I am seeking to deliver anonymously. In sharp contrast, some people actually get mad at me--not often for sure. Most people, like my son, think it is odd behavior. I suppose it is. I also suppose it is petty. But it still gives me a sense of satisfaction. I am convinced people who are observant will get the message I am seeking to deliver. And that is all I am trying to do--get a select few people to think. Handicapped parking is a ubiquitous aspect of every day life few give any thought. We people with a disability think about the violation of handicapped parking and find it unacceptable. It is a minor inconvenience that indicates a much larger problem. The routine violation of our civil rights. Handicapped parking is very minor but indicative of a much larger cultural problem.
Monday, September 12, 2011
The Problem with "Special"
This summer I have been lucky enough to travel. I love to travel and thoroughly enjoy reaching my destination. However, I hate to fly. Domestic travel as most know is an absolutely miserable experience. Airlines, never known for outstanding customer service, have since 9/11 made flying a uniformly bad experience. Planes are fully booked, often dirty, and food absent. Airlines also nickle and dime customers to death: $2 for head phones, $25 for checked bags, $100 for an unaccompanied minor, $40 for the bulk head seat etc. Fees on top of fees ad to the cost of travel. None of this is new. Ask virtually anyone and they will have a miserable travel related story. Ask someone who uses a wheelchair and the stories become worse--much worse. Airlines have an institutional bias against people with a disability. This ingrained bias, bigotry really, has not changed in thirty years. What has changed is the law. The Air Carrier Access Act is firmly on the the side of people with a disability. No longer can I be banned from flying for no other reason than the fact I use a wheelchair. This does not in any way mean I am welcome or treated equally by airline employees. Indeed, I am routinely perceived as a "problem"--extra work for employees. And truth be told it does require more work to get me on a plane-not much but in an industry were time is limited and profit margins narrow I am perceived as a problem. When I fly I assume problems will abound. I am rarely if ever have a routine experience.
Aside from being perceived as extra labor, airlines I suspect resent giving passengers with disabilities "special" treatment. Special for me involves getting the bulkhead seat--never easy given the fact these seats are sold to any passenger willing to fork over $40 for a few extra inches of leg room. Special also means I am the first person on the plane and the very last person off the plane. I do mean last as in the very last passenger off the plane. Every time I fly I get to see the flight crew depart and cleaning crew come aboard while I wait for "trained personnel" to help me onto what the airlines call a straight back. This is a very narrow wheelchair that fits in the aisle of the plane. More often than not the trained personnel have no idea what they are doing. Each time I flew this summer multiple FAA regulations were violated assisting me off the plane. Waits for the trained personnel are common. I often get to sit on an empty plane waiting. Forget about making connecting flights in a reasonable amount of time. The special treatment I receive adds hours of time to my travel experience. Airlines do not care one iota. What is very clear is that my existence is of the lowest priority. First on last off--too bad. Cope with it. We will help you when we have assisted every other passenger--and I do mean every other passenger.
I am lumped by airlines into a group of special people. Children, elderly, and pets. Don't believe me? Check out any airline website. I am deemed a "passenger with special needs". If I have learned one thing in life it is that we Americans loath so called special people. We firmly adhere to a mythical sense that all people are equal. Those that are given special consideration are disliked. Being special is UnAmerican! This message is not subtle but overt. It extends well beyond air travel. At board of education meetings i have heard again and again why is so much money spent on special education. Regular kids suffer I am told. Need a lift on the bus? Why not just pay a taxi to take the child to school? Think of how much money we will save.
The thoughts above were prompted by an article in of all places the sports section of the NY Post. A tabloid not exactly known for quality. The article in question, Even TSA Employees are Scamming, by Phil Mushnick was published September 11. Mushnick was outraged that a TSA employee at Newark airport was willing to take passengers off the security line and directly to the front of the line. This was accomplished by sitting in a wheelchair. You see at most airports people with a disability do not wait on security lines. There is a special lane for people with disabilities. It is one of those rare instances using a wheelchair is an advantage. While I enjoy this advantage, especially when security lines are long, I think it is wrong. I should wait in line like everyone else. If I were standing in line I would be resentful of such special treatment. And this is the problem with special. I am not equal. So called special accommodations only lead to unequal treatment. Special buses, resource rooms in schools, handicapped seating--none of this fosters equality but instead segregation in a socially accepted form.
I will confess I have never seen the scam Mushnick described taking place at Newark. I would like to think I would make a complaint but upsetting the routine at airports is a very bad idea. Subservience is required when Americans travel. Humiliation rituals abound such as passing through security and passengers are expected to do as they are told by airline personnel. Rigid control is expected. Within these larger cultural parameters there is no place for me. I am dubbed special--a categorization that is inherently problematic and unequal. It also reminds me of Kermit the Frog--one of my sons favorite characters on television when he was a little boy--who maintained it is not easy being green. I can only concur with this assessment.
Aside from being perceived as extra labor, airlines I suspect resent giving passengers with disabilities "special" treatment. Special for me involves getting the bulkhead seat--never easy given the fact these seats are sold to any passenger willing to fork over $40 for a few extra inches of leg room. Special also means I am the first person on the plane and the very last person off the plane. I do mean last as in the very last passenger off the plane. Every time I fly I get to see the flight crew depart and cleaning crew come aboard while I wait for "trained personnel" to help me onto what the airlines call a straight back. This is a very narrow wheelchair that fits in the aisle of the plane. More often than not the trained personnel have no idea what they are doing. Each time I flew this summer multiple FAA regulations were violated assisting me off the plane. Waits for the trained personnel are common. I often get to sit on an empty plane waiting. Forget about making connecting flights in a reasonable amount of time. The special treatment I receive adds hours of time to my travel experience. Airlines do not care one iota. What is very clear is that my existence is of the lowest priority. First on last off--too bad. Cope with it. We will help you when we have assisted every other passenger--and I do mean every other passenger.
I am lumped by airlines into a group of special people. Children, elderly, and pets. Don't believe me? Check out any airline website. I am deemed a "passenger with special needs". If I have learned one thing in life it is that we Americans loath so called special people. We firmly adhere to a mythical sense that all people are equal. Those that are given special consideration are disliked. Being special is UnAmerican! This message is not subtle but overt. It extends well beyond air travel. At board of education meetings i have heard again and again why is so much money spent on special education. Regular kids suffer I am told. Need a lift on the bus? Why not just pay a taxi to take the child to school? Think of how much money we will save.
The thoughts above were prompted by an article in of all places the sports section of the NY Post. A tabloid not exactly known for quality. The article in question, Even TSA Employees are Scamming, by Phil Mushnick was published September 11. Mushnick was outraged that a TSA employee at Newark airport was willing to take passengers off the security line and directly to the front of the line. This was accomplished by sitting in a wheelchair. You see at most airports people with a disability do not wait on security lines. There is a special lane for people with disabilities. It is one of those rare instances using a wheelchair is an advantage. While I enjoy this advantage, especially when security lines are long, I think it is wrong. I should wait in line like everyone else. If I were standing in line I would be resentful of such special treatment. And this is the problem with special. I am not equal. So called special accommodations only lead to unequal treatment. Special buses, resource rooms in schools, handicapped seating--none of this fosters equality but instead segregation in a socially accepted form.
I will confess I have never seen the scam Mushnick described taking place at Newark. I would like to think I would make a complaint but upsetting the routine at airports is a very bad idea. Subservience is required when Americans travel. Humiliation rituals abound such as passing through security and passengers are expected to do as they are told by airline personnel. Rigid control is expected. Within these larger cultural parameters there is no place for me. I am dubbed special--a categorization that is inherently problematic and unequal. It also reminds me of Kermit the Frog--one of my sons favorite characters on television when he was a little boy--who maintained it is not easy being green. I can only concur with this assessment.
Saturday, September 3, 2011
Hurricane Irene Highlights Inequality
Hurricane Irene blew into the New England area Saturday night or early Sunday morning. In comparison to others I fared well. No trees came down on my property. The only damaged trees were my favorites--two American Chestnuts. The only problem I had was a loss of power. The power went out at 3:30AM Sunday. The power did not come back on until late Thursday evening. Four full days without power sucks. No power means no water, flushing toilets or showers. By Thursday I was, how shall we say it, ripe. No computer too hence no work. What I experienced was a minor inconvenience. The last four days made me realize just how utterly dependent we are on electricity. I also realized how lucky I was--I did not need to evacuate my home and go to a hurricane shelter. If I had to do this I would have been in deep trouble. I cannot go to any shelter--I need a shelter that is accessible. By accessible I mean a building I can enter. I would need a bathroom I can get in and a cot I can transfer on. Pretty basic. Not so fast. It is not so basic.
Thanks to two excellent posts by Not Dead Yet on August 29 and 31, I was deeply troubled to learn, but hardly surprised, that many New York City shelters in low lying areas were not accessible. No mainstream media outlet, television news or newspaper, picked up this story. Two news outlets, Public News Service and NY1, did short stories. That was it. This shocks me. We had full media saturation about the hurricane that was damn near hysterical. The lack of accessible shelters has been detailed by Not Dead Yet. I urge readers to read what Stephen Drake, Susan Dooha and Paul Timmons wrote on August 29 and 31. Timmons has experience with disaster relief, Dooha is the Executive director of the Center for Independence of the Disabled New York, and Drake is a research analyst at Not Dead Yet. These people know what they are talking about. Timmons and Dooha have tried to make access issues a concern for FEMA and VOAD. Much money has been spent, many meetings have been held and yet virtually nothing has been accomplished. This is what Dooha witnessed:
"I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc."
The gross lack of access described by Dooha is not acceptable. Need I remind everyone of the disgraceful response to Hurricane Katrina? And what about of 9/11? We have had ten years to prepare for a disaster and somehow shelters and transportation remain inaccessible. Timmons sourly noted: "The fact there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy. But almost always, any attention to people with disabilities stops there." There really is only one conclusion to be reached--in a very real and practical way the powers that be, FEMA and the Red Cross, do not value the lives of people with disabilities. We are expendable--and acceptable loss of life. To quote Timmons again "The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die.
And ya know what? As I wrote that last line, it occurred to me: it's not entirely accurate. The reality is...they're actually trying to kill us."
Timmons words are inflammatory. I doubt FEMA is trying to kill us deliberately. Yet FEMAs total disregard to access will indeed lead to the deaths of people with disabilities. This has taken place in the past and based on what I have read is still very much a deadly problem--one that need not exist. But exist it does. Hence I live with the sober realization that if a natural disaster took place tomorrow I would be on my own. My odds of survival would be dim at best. This makes me angry and depressed. It is a not so subtle reminder I am far from equal to those that are bipedal.
Thanks to two excellent posts by Not Dead Yet on August 29 and 31, I was deeply troubled to learn, but hardly surprised, that many New York City shelters in low lying areas were not accessible. No mainstream media outlet, television news or newspaper, picked up this story. Two news outlets, Public News Service and NY1, did short stories. That was it. This shocks me. We had full media saturation about the hurricane that was damn near hysterical. The lack of accessible shelters has been detailed by Not Dead Yet. I urge readers to read what Stephen Drake, Susan Dooha and Paul Timmons wrote on August 29 and 31. Timmons has experience with disaster relief, Dooha is the Executive director of the Center for Independence of the Disabled New York, and Drake is a research analyst at Not Dead Yet. These people know what they are talking about. Timmons and Dooha have tried to make access issues a concern for FEMA and VOAD. Much money has been spent, many meetings have been held and yet virtually nothing has been accomplished. This is what Dooha witnessed:
"I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc."
The gross lack of access described by Dooha is not acceptable. Need I remind everyone of the disgraceful response to Hurricane Katrina? And what about of 9/11? We have had ten years to prepare for a disaster and somehow shelters and transportation remain inaccessible. Timmons sourly noted: "The fact there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy. But almost always, any attention to people with disabilities stops there." There really is only one conclusion to be reached--in a very real and practical way the powers that be, FEMA and the Red Cross, do not value the lives of people with disabilities. We are expendable--and acceptable loss of life. To quote Timmons again "The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die.
And ya know what? As I wrote that last line, it occurred to me: it's not entirely accurate. The reality is...they're actually trying to kill us."
Timmons words are inflammatory. I doubt FEMA is trying to kill us deliberately. Yet FEMAs total disregard to access will indeed lead to the deaths of people with disabilities. This has taken place in the past and based on what I have read is still very much a deadly problem--one that need not exist. But exist it does. Hence I live with the sober realization that if a natural disaster took place tomorrow I would be on my own. My odds of survival would be dim at best. This makes me angry and depressed. It is a not so subtle reminder I am far from equal to those that are bipedal.
Saturday, August 27, 2011
Religion and Disability
I am a recovering Irish Catholic. I state this with the same reverence alcoholics state they are in recovery. I value and abhor my traditional upbringing in a private but deeply religious family. I find my Catholic childhood ironic in that I cannot get the church out of my brain. Thus I may have left the Church long ago but the Church has not left me. Regardless of my views of the Church, it was and remains a great training ground for cultural anthropologists. The Catholic Church would like to believe it has a monopoly on all symbols we consider holy in the Christian world. One cannot go to Church and be unaware of symbolism and its power. I have turned this awareness away from the plethora of Catholic symbols such as the cross or rosary beads to an academic analysis of cultural symbolism particularly as it relates to disability studies. Cultural anthropologists have been fascinated by the cultural symbolism produced by a myriad of cultures—symbols that members often take for granted. This unwitting acceptance is evident in all organized religions and within the realm of the disability experience. We simply accept the cross and crown of thorns as the symbolic example of Christ’s suffering. Likewise we accept without question that a wheelchair such as the one I use is the ultimate symbol of weakness and dependence. We all know without thought that walking is normal and wheelchair use is not. In this essay I want to explore the symbols associated with disability, its public perception and unfortunate exclusion of people with a disability.
Let me begin with a forceful and hard to fathom conviction that is central to my core: I reject any suggestion that my disability and consequent wheelchair use makes me less of a person. This is not just wrong but hopelessly antiquated thinking. For me, and millions of other paralyzed people, a wheelchair is a powerful form of human adaptation, a technological marvel that enhances life. Some may think this is self-evident. If I have learned one thing in my 30 years of life as a paralyzed person it is that most people I come across think my life is either a tragedy, grossly diminished because I cannot walk or that I am some sort of super hero because I can do what everyone else takes for granted—education, marriage, family, career etc. In terms of religious symbolism disability is often associated with sin. An imperfect body, and a disabled person certainly has a flawed body, is unholy. Cure fits prominently into this discourse a well. Jesus healed the sick, cured the blind, and made the crippled walk again. The message here is not subtle—perfect bodies, non disabled bodies indicate a good spirit. Hence disabled bodies are inherently and morally flawed. We people with a disability are “God’s special children”. The first time I heard this phrase I was in seventh grade. By that time it was obvious I had a severe neurological impairment. I was in Catholic school when one of the nuns that taught me told me I did not have to do any homework. Confused, I asked why. She replied that I was “one of God’s special children and that homework was no longer necessary”. Not sure what to make of this I returned home and needled my siblings that I had no homework. My mother looked at me curiously and asked why. I told her what the nun had said to me. I could see the steam emerge from her ears and her face flush with anger. She told me she was going out and that she would be back in an hour. True to her word, she returned and told me I would be starting public school the next morning.
I learned a life lesson from my mother that has enabled me to resist any notion I was special—a word often used to describe children with a disability. Special is a buzz-word with a different meaning in religion. No care or thought is given to the fact children and the adults they become are socially isolated, encounter numerous architectural obstacles when they desire to enter a church or that they are virtually locked out of accessing adequate health insurance. In place of a humane social response people with physical and cognitive deficits are reduced to the notion of virtuous suffering. They are faced with trials of character and obedience to God. This leaves the person with a disability two unenviable choices—suffer in silence or search out a miraculous cure to a given disability. What is not an option is a “normal” life. Nancy L. Eisland has written
Living with a disability is difficult. Acknowledging this difficulty is not a defeat, I have learned, but a hard-won accomplishment in learning to live life that is not disabled. The difficulty for people with disabilities has two parts really—living with our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily”. (Eisland 1994:13)
The beauty and power of religion, what draws people and gives them comfort, is its unchanging nature. This timelessness is not good for people with a disability. Indeed, since I have been paralyzed I have routine and overwhelmingly negative experiences with the Catholic Church. In fact I would go as far as to state the Church is a hostile social environment for any person that uses a wheelchair. I endure some form of social harassment every time I set foot into a church. This can be as simple as locked side entrances to the total absence of ramps. Parishioners are not better. I have been told if I prayed harder I would be cured. Little old ladies bless my poor crippled body. Old men that can barely walk want to push my wheelchair. Priests and nuns can be nothing short of cruel. Before I was married I was interviewed by a priest who openly questioned my ability to father a child—it was the purpose of the union of man and wife. Nuns look askance at my body and seek to place me with the elderly and cognitively disabled in a “special” section. This location is always obscure and out of sight of other parishioners as our mere presence is too upsetting for others. What I have learned is to avoid the Church at all costs. A sentiment my son expressed to me when he was a little boy. Despite my problems with the Church I was determined to raise him Catholic. This effort had less to do with religion than the larger positive messages the Catholic Church has fostered since its inception. One Sunday after Church my son announced he was no longer going to go to church. I thought he simply found church boring as I had as a boy. But what he said startled me: “Dad, I don’t want to ever go to church because people are mean to you and it is full of bad people”. I was stunned. What I had intended to teach my son had been perverted into something that was, well, anti-Christian.
I know people mean well. No one wakes up and thinks I am going to be a bigot against people with a disability. Regardless of their meaning or intent the message sent is indeed bad and the social implications deadly for they extend beyond the steps of the Church. Claire Roy has passionately written:
“I hate the whole idea and I hate hearing it come out of people's mouth, because I know they don't get it and I know it gives them comfort to think that something as completely "normal" and frequent as disability and the huge challenges families face in dealing with it is in "God's hands" and not in theirs, plain and simple. It's easy to put God in charge because then you don't have to be. You don't have to make your business or school accessible, or you don't have to get over how my disabled kid looks, or deal with them at all, if God is taking care of everything, right? Once that miracle hits your home, all your troubles will be forgotten! I have not yet met anyone with a miraculous ending...other than the fact that they carry on and actually find some grace in the matter. There's your miracle.” (Roy September 13, 2010)
The real social tragedy when it comes to the Church and religion is how unnecessary the exclusion is of people with a disability. While my experiences with the Church is only negative within the context of a hospital it is the exact opposite. I have found hospital chaplains to be open minded, accepting and socially skilled individuals. These men are not afraid to rock the boat, to do mundane tasks, or whatever is necessary to help a person in need. What I find amazing about hospital chaplains is they do what I wish a parish priest did—provide spiritual guidance to people in need. This would include patients, family members and staff. Whenever I am ready to denounce all organized religion I think of my many positive experience with hospital chaplains. While non denominational the people I have met most often are Catholic priests. They are uniformly good people. But more than that they get disability, infirmity, old age, and death. They are a soothing helpful presence. Perhaps we should direct these men to the local parish.
Let me begin with a forceful and hard to fathom conviction that is central to my core: I reject any suggestion that my disability and consequent wheelchair use makes me less of a person. This is not just wrong but hopelessly antiquated thinking. For me, and millions of other paralyzed people, a wheelchair is a powerful form of human adaptation, a technological marvel that enhances life. Some may think this is self-evident. If I have learned one thing in my 30 years of life as a paralyzed person it is that most people I come across think my life is either a tragedy, grossly diminished because I cannot walk or that I am some sort of super hero because I can do what everyone else takes for granted—education, marriage, family, career etc. In terms of religious symbolism disability is often associated with sin. An imperfect body, and a disabled person certainly has a flawed body, is unholy. Cure fits prominently into this discourse a well. Jesus healed the sick, cured the blind, and made the crippled walk again. The message here is not subtle—perfect bodies, non disabled bodies indicate a good spirit. Hence disabled bodies are inherently and morally flawed. We people with a disability are “God’s special children”. The first time I heard this phrase I was in seventh grade. By that time it was obvious I had a severe neurological impairment. I was in Catholic school when one of the nuns that taught me told me I did not have to do any homework. Confused, I asked why. She replied that I was “one of God’s special children and that homework was no longer necessary”. Not sure what to make of this I returned home and needled my siblings that I had no homework. My mother looked at me curiously and asked why. I told her what the nun had said to me. I could see the steam emerge from her ears and her face flush with anger. She told me she was going out and that she would be back in an hour. True to her word, she returned and told me I would be starting public school the next morning.
I learned a life lesson from my mother that has enabled me to resist any notion I was special—a word often used to describe children with a disability. Special is a buzz-word with a different meaning in religion. No care or thought is given to the fact children and the adults they become are socially isolated, encounter numerous architectural obstacles when they desire to enter a church or that they are virtually locked out of accessing adequate health insurance. In place of a humane social response people with physical and cognitive deficits are reduced to the notion of virtuous suffering. They are faced with trials of character and obedience to God. This leaves the person with a disability two unenviable choices—suffer in silence or search out a miraculous cure to a given disability. What is not an option is a “normal” life. Nancy L. Eisland has written
Living with a disability is difficult. Acknowledging this difficulty is not a defeat, I have learned, but a hard-won accomplishment in learning to live life that is not disabled. The difficulty for people with disabilities has two parts really—living with our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily”. (Eisland 1994:13)
The beauty and power of religion, what draws people and gives them comfort, is its unchanging nature. This timelessness is not good for people with a disability. Indeed, since I have been paralyzed I have routine and overwhelmingly negative experiences with the Catholic Church. In fact I would go as far as to state the Church is a hostile social environment for any person that uses a wheelchair. I endure some form of social harassment every time I set foot into a church. This can be as simple as locked side entrances to the total absence of ramps. Parishioners are not better. I have been told if I prayed harder I would be cured. Little old ladies bless my poor crippled body. Old men that can barely walk want to push my wheelchair. Priests and nuns can be nothing short of cruel. Before I was married I was interviewed by a priest who openly questioned my ability to father a child—it was the purpose of the union of man and wife. Nuns look askance at my body and seek to place me with the elderly and cognitively disabled in a “special” section. This location is always obscure and out of sight of other parishioners as our mere presence is too upsetting for others. What I have learned is to avoid the Church at all costs. A sentiment my son expressed to me when he was a little boy. Despite my problems with the Church I was determined to raise him Catholic. This effort had less to do with religion than the larger positive messages the Catholic Church has fostered since its inception. One Sunday after Church my son announced he was no longer going to go to church. I thought he simply found church boring as I had as a boy. But what he said startled me: “Dad, I don’t want to ever go to church because people are mean to you and it is full of bad people”. I was stunned. What I had intended to teach my son had been perverted into something that was, well, anti-Christian.
I know people mean well. No one wakes up and thinks I am going to be a bigot against people with a disability. Regardless of their meaning or intent the message sent is indeed bad and the social implications deadly for they extend beyond the steps of the Church. Claire Roy has passionately written:
“I hate the whole idea and I hate hearing it come out of people's mouth, because I know they don't get it and I know it gives them comfort to think that something as completely "normal" and frequent as disability and the huge challenges families face in dealing with it is in "God's hands" and not in theirs, plain and simple. It's easy to put God in charge because then you don't have to be. You don't have to make your business or school accessible, or you don't have to get over how my disabled kid looks, or deal with them at all, if God is taking care of everything, right? Once that miracle hits your home, all your troubles will be forgotten! I have not yet met anyone with a miraculous ending...other than the fact that they carry on and actually find some grace in the matter. There's your miracle.” (Roy September 13, 2010)
The real social tragedy when it comes to the Church and religion is how unnecessary the exclusion is of people with a disability. While my experiences with the Church is only negative within the context of a hospital it is the exact opposite. I have found hospital chaplains to be open minded, accepting and socially skilled individuals. These men are not afraid to rock the boat, to do mundane tasks, or whatever is necessary to help a person in need. What I find amazing about hospital chaplains is they do what I wish a parish priest did—provide spiritual guidance to people in need. This would include patients, family members and staff. Whenever I am ready to denounce all organized religion I think of my many positive experience with hospital chaplains. While non denominational the people I have met most often are Catholic priests. They are uniformly good people. But more than that they get disability, infirmity, old age, and death. They are a soothing helpful presence. Perhaps we should direct these men to the local parish.
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