When the issue of disability rights comes up I am often asked, "Come on, how bad it it?" Some people have a hazy idea there was a law passed a long time ago that they are convinced solved all the problems of disability based discrimination. Others are simply oblivious. Disability discrimination in their estimation is a myth. The reasoning here is two fold: first, no one would or ever has discriminated against crippled people. Society looks after the less fortunate. Second, since discrimination has never taken place there is no need to protect the civil rights of people with a disability. Any connection between disability rights and civil rights is accordingly wrong and way off base. It is hard for me to fathom the way the general public thinks. But then I think of course, people are not exposed to disability until the end of life if they live long enough. Disability is not taught in secondary schools nor is it part of university curriculums. Hence, ignorance abounds.
So to return to the question, "Come on, just how bad is it?" Pretty damn bad. Horrifying in fact. A series of grim statistics have been released that indicate things are very bad. First I read a report in the American Journal of Preventative Medicine, "Sexual Victimization Against Men with Disabilities" that not only are women with disabilities at great risk of sexual abuse but so too are men. This report found that men with cognitive disabilities were four times more likely to experience abuse than men without cognitive deficits. I tend to think the risk might be even greater because the study was specifically about cognitively disabled men who were not institutionalized. The researchers glumly concluded "Men with disabilities are at a heightened risk for lifetime and current sexual violence victimization. The most notable finding is that the prevalence of lifetime sexual violence, completed rape and attempted rape against men with disabilities was comparable to that against women without disabilities".
In keeping with the sexual violence and victimization, this week the Department of Justice released a report entitled "Crimes Against Persons with Disabilities, 200802010-Statistical Tables". And yes you guessed it things are pretty bad. In 2010, 567,000 people with a disability aged 12 and older were the victims of nonfatal crimes. No statistics were included about fatal crime victims. Again, these figures do not include people with disabilities in institutions. Nonfatal cries are rape, sexual assault, robbery, aggravated assault and simple assault. Amazing this represents progress. In 2009, 753,000 people with disabilities were the victim of a nonfatal crime.
Again, I return to the question, "Come on, how bad is it?" Bad, very bad. And it gets worse. The violence experienced by Americans is minimal when compared to people with disabilities living in Third World countries. The odds of a person with a disability in a Third World country living to the age of 21 is about 20% Am I lucky to live in America? I suppose so but I certainly do not feel safe after reading the two reports discussed. I have never felt equal. I fear crowds. I am exceedingly aware of my surroundings. I secure my wallet carefully. I do not attend any event that could remotely turn violent. This excludes me from protesting, something I would very much like to do. I would not consider going to a football game here or abroad. I know in the event of a natural disaster shelters are most likely not accessible. Forget mass transportation. In the event of a plane crash my dim odds of survival are worse than every person that walked onto the plane. Need I go on? Equal I am not. In short, yes things are bad. But this does not bother me nearly as much as the fact no one seems to care. Not my neighbors, certainly not the local school board. The town government maybe? Not a chance. The only people who care are those whose life has been touched in a tangible way by disability. Some of my friends and family care. Some of my former students care. I know the people that read this blog care very much. I just wish I could reach the average person on Main Street as politicians like to invoke. Those people matter. Those people are the one that pose the question "come on, how bad is it"
Friday, October 14, 2011
Wednesday, October 12, 2011
Keep Quiet: A Clear Message
Certain social environments are hostile to people with a disability. There is no universal source of agreement on this. Much depends upon one's age, disability, gender, sexual orientation, social status, geographic location etc. For me, your average paralyzed, middle aged white male I do my best to avoid Catholic Churches, health food stores, and gyms to mention but three places that are hostile to inclusion. I know if I venture into anyone of these places I am going to be demeaned, insulted and treated as a second class citizen. My attitude is why bother? Cut my loses and read the Bible, order vitamins on line, and work out at home. I would also put one more social setting on the list as hostile to disabilities--and this is by no means universal--but would include university campuses. Given this, I was not surprised to read about a student at a New Jersey community college who was subjected to gross bigotry. The student in question stuttered. His teacher, an adjunct, suggested he not take up important class time and ask a question but rather submit questions in writing. The teacher also refused to call on this student in class. Much moral outrage has been expressed and the story has spread well beyond the confines of the New York City area. As usual when it comes to disability, the mainstream press has failed to grasp the larger importance of this incident. Instead news stories are stuck in the lurid details: how bad is the stutter? Adjuncts are under paid and incompetent! Is stuttering a disability? Is the teacher request for written questions a reasonable accommodation? All this misses the point--badly. What is at issue is a larger and growing animosity to students with disabilities on university campuses.
Are some American universities truly inclusive and responsive to disability rights? Yes, and I can think of many with a long history of inclusion. But the opposite is true as well. Some universities are hostile to people with disabilities. For instance, Ivy League institutions I would consider among the worst. When I graduated from Columbia in 1992 a mere two years after the ADA was passed into law I was pissed. Academic administrators purposely made my life miserable at Columbia. Access was not a priority, it was an onerous expensive burden. Cost cutting was common and elevators and wheelchair lifts rarely worked--more than once I was told service contracts for repair were too costly. Entrances that were accessible were often locked, keys mysteriously disappeared. These problems are minor when one considers the social hostility. More than once I was questioned about my place as a graduate student. Did I not feel guilty that I was preventing another qualified student from getting a degree? You see it was assumed I could never work, publish, or be employed.
Throughout the 1990s and until the mid 2000s universities became more accommodating socially and physically. Few if any professors were hired but plenty of students with disabilities were accepted. The welcome wagon came to a screeching halt when the economy tanked and a critical mass of students were suddenly not only asking but demanding reasonable accommodations be made. More than once I have had my professorial peers confess the campus "was over run with students with disabilities demanding ridiculous accommodations like extra class time". When I replied I saw no difference between a ramp and extra time on an exam I was deemed "difficult" or told "that ramps were entirely different".
What then is the larger significance of the story about the student with a stutter? Universities may be more physically accessible but the same institutions that build ramps and install elevators without complaint are far from inclusive. We people with a disability are second class citizens. Lip service is paid to our civil rights. How dare we ask for more! And I have it easy. Physical access for wheelchair users is assumed to be required and as such it is provided--of course if such access is expensive it is the first line item cut from the budget. The real animosity is reserved for students with learning disabilities and what can be called disability studies. Inclusion is much more than ramps and extra time to take a test. Over at Planet of the Blind Kuusisto remarked:
"when higher education can't manage a simple accommodation it delivers that old name tag: “second rate”. By not solving the problem the hierarchical dynamics of ableism are a defacto position.
Doing better means achieving something more than assuring the professional and dignified delivery of accommodations for people with disabilities. It requires a vigorous affirmation of the term “nothing about us, without us” and it means demanding full equality and respect for people with disabilities from all the offices of higher education. Unfortunately, as Lennard J. Davis has remarked, there’s a lingering ableism within neo-liberal circles, one that progressive faculty and administrators don’t generally recognize. I agree with Lenny Davis that the failure of higher education to incorporate disability into a broader framework of campus diversity is a good part of the problem. When an institutilon can imagine that people with disabilities are to be accommodated by special segregated offices and that's the whole of the matter, you are simply reaffirming a victorian (small v) assumption that the cripples belong in a special place--certainly they don't belong in the agora."
This is all too true. In my career I have yet to feel welcomed and my views on disability rights respected at universities where I have worked. Access it was clear was my problem. If I ever broached the subject of disability studies being included in the core curriculum the idea was met with derision. If you want to delve into this in detail, I suggest you read Lenny Davis work. His book Bending Over Backwards is outstanding as is his most recent essay in the Chronicle of Higher Education entitled "Why Is Disability Missing From Discourse on Diversity (September 25). The skeptic reading this post may be thinking come on, you are full of yourself. I think not. When my son applied to college I learned much about the business of higher education. Diversity, we parents about send in huge tuition payments, were told the campus is diverse. Big bold colorful pictures of young men and women throwing frisbees abounded. Every ethnic group was represented. Not once did I see a photograph of my people. Never did I see a paralyzed student or professor depicted in admissions brochures. In fact, more than one campus tour was entirely not accessible. It was suggested that I remain behind while my son take a tour with dozens of other students and their parents. Call me crazy but this felt and seemed a lot like segregation. Would they have suggested black people stay behind? Not a chance. The fact I had this experience on the grounds of supposedly institutions of higher education is deeply troubling. A sure sign that universities have long way to go in understanding and respecting people with a disability. A good start might be a class on disability rights.
Are some American universities truly inclusive and responsive to disability rights? Yes, and I can think of many with a long history of inclusion. But the opposite is true as well. Some universities are hostile to people with disabilities. For instance, Ivy League institutions I would consider among the worst. When I graduated from Columbia in 1992 a mere two years after the ADA was passed into law I was pissed. Academic administrators purposely made my life miserable at Columbia. Access was not a priority, it was an onerous expensive burden. Cost cutting was common and elevators and wheelchair lifts rarely worked--more than once I was told service contracts for repair were too costly. Entrances that were accessible were often locked, keys mysteriously disappeared. These problems are minor when one considers the social hostility. More than once I was questioned about my place as a graduate student. Did I not feel guilty that I was preventing another qualified student from getting a degree? You see it was assumed I could never work, publish, or be employed.
Throughout the 1990s and until the mid 2000s universities became more accommodating socially and physically. Few if any professors were hired but plenty of students with disabilities were accepted. The welcome wagon came to a screeching halt when the economy tanked and a critical mass of students were suddenly not only asking but demanding reasonable accommodations be made. More than once I have had my professorial peers confess the campus "was over run with students with disabilities demanding ridiculous accommodations like extra class time". When I replied I saw no difference between a ramp and extra time on an exam I was deemed "difficult" or told "that ramps were entirely different".
What then is the larger significance of the story about the student with a stutter? Universities may be more physically accessible but the same institutions that build ramps and install elevators without complaint are far from inclusive. We people with a disability are second class citizens. Lip service is paid to our civil rights. How dare we ask for more! And I have it easy. Physical access for wheelchair users is assumed to be required and as such it is provided--of course if such access is expensive it is the first line item cut from the budget. The real animosity is reserved for students with learning disabilities and what can be called disability studies. Inclusion is much more than ramps and extra time to take a test. Over at Planet of the Blind Kuusisto remarked:
"when higher education can't manage a simple accommodation it delivers that old name tag: “second rate”. By not solving the problem the hierarchical dynamics of ableism are a defacto position.
Doing better means achieving something more than assuring the professional and dignified delivery of accommodations for people with disabilities. It requires a vigorous affirmation of the term “nothing about us, without us” and it means demanding full equality and respect for people with disabilities from all the offices of higher education. Unfortunately, as Lennard J. Davis has remarked, there’s a lingering ableism within neo-liberal circles, one that progressive faculty and administrators don’t generally recognize. I agree with Lenny Davis that the failure of higher education to incorporate disability into a broader framework of campus diversity is a good part of the problem. When an institutilon can imagine that people with disabilities are to be accommodated by special segregated offices and that's the whole of the matter, you are simply reaffirming a victorian (small v) assumption that the cripples belong in a special place--certainly they don't belong in the agora."
This is all too true. In my career I have yet to feel welcomed and my views on disability rights respected at universities where I have worked. Access it was clear was my problem. If I ever broached the subject of disability studies being included in the core curriculum the idea was met with derision. If you want to delve into this in detail, I suggest you read Lenny Davis work. His book Bending Over Backwards is outstanding as is his most recent essay in the Chronicle of Higher Education entitled "Why Is Disability Missing From Discourse on Diversity (September 25). The skeptic reading this post may be thinking come on, you are full of yourself. I think not. When my son applied to college I learned much about the business of higher education. Diversity, we parents about send in huge tuition payments, were told the campus is diverse. Big bold colorful pictures of young men and women throwing frisbees abounded. Every ethnic group was represented. Not once did I see a photograph of my people. Never did I see a paralyzed student or professor depicted in admissions brochures. In fact, more than one campus tour was entirely not accessible. It was suggested that I remain behind while my son take a tour with dozens of other students and their parents. Call me crazy but this felt and seemed a lot like segregation. Would they have suggested black people stay behind? Not a chance. The fact I had this experience on the grounds of supposedly institutions of higher education is deeply troubling. A sure sign that universities have long way to go in understanding and respecting people with a disability. A good start might be a class on disability rights.
Friday, October 7, 2011
Stephen Kuusisto: Words to Make You Think
Over the last few years I have mentioned many disability rights oriented blogs. I have my favorites of course and among the blogs that never fails to impress me is Stephen Kuusisto's Planet of the Blind. If you have not read his blog and published work--especially his memoir Planet of the Blind--stop reading these words. Go to his blog or better yet buy one of his books. Kuusisto is way smarter than I am. His writing is head and shoulders above anything I have published or posted here. He is also funnier than I am. By funny I mean it in the rarest of ways--he can make you laugh and think at the same time. Okay, my man crush is over. You get the idea--Kuusisto is funny, smart and a gifted writer. If an academic could have a fan club I would be a charter member.
Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes
"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."
Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.
The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:
"Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.
I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".
Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.
Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes
"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."
Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.
The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:
"Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.
I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".
Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.
Thursday, September 29, 2011
Rude People Never Get It
It has been raining off and on for days. I have been too lazy to go out as I don't feel like getting drenched. Today I had no choice. I was out of beer and school town taxes are due. I waited until the end of the day hoping the skies would clear. No such luck. Off I go to the post office, bank, and supermarket in the rain. Woe is me.
Amazingly there is a handicapped parking spot open at the strip mall. I snag the spot and quickly realize waiting for the rain to let up is a waste of time. As I am getting out of the car putting my wheelchair together I see a guy in a big SUV staring at me through the driver window. By staring I mean a bold face stare. I am clearly fascinating. I am rushing in large part because I do not want to get drenched. Off I go to the post office and supermarket. Taxes are on their way and I have beer to go with my dinner. What more could a man want? As I am getting back into the car the same man in the SUV is staring at me. Again, a bold face stare. Now I am annoyed. I stare back, glare actually. He does not get it. And yes it is still raining hard. The man rolls down his window and the following exchange takes place:
Me: The show is over, stop staring.
Man: Wow, it is amazing how you get that wheelchair in and out of the car.
Me: Stop staring, you are being rude.
Man: I am a nice guy. You are amazing.
Me: You are not being nice, you are being rude.
Man: Why are you mad? You are amazing. I am nice.
Me: No, you are being rude. I do not want to be stared at. I do not like it. Stop staring.
Man: It is cool the way you put the wheelchair together. I like to watch.
Me. The show is over. Stop staring you are being a jerk.
Man: Why are you people always so bitter? I am just being nice.
Me: You are not nice. You are point blank rude. Stop staring.
Exasperated, the man shakes his head like he is dealing with a difficult child. As the window goes up he says: "Some people you just can't be nice to" and suddenly yells "you ass hole".
Ah just another day in paradise. I am so glad that 20 years ago the ADA mandated that I have equal rights. I am not sure this memo is understand by more than a tiny fraction of Americans. The above exchange was hardly unusual--it happens to me on a regular basis. Call me crazy--or a bitter asshole--but I find getting my wheelchair in and out of the car as exciting as watching a bipedal person get in and out of his car. This is not "amazing" stuff and I was very clear I did not want to be stared at. To me, that is not much to ask. What is amazing to me is how rude and oblivious people can be. Is this man vaguely aware of how rude he was? Not a chance. The problem in his estimation is "you bitter people"--yes I was reduced to "you bitter people" and labeled an ass hole. Is it any wonder there are days I do not want to leave my home? Social assaults are commonplace, accepted and on rainy days like this do think they will ever stop.
Amazingly there is a handicapped parking spot open at the strip mall. I snag the spot and quickly realize waiting for the rain to let up is a waste of time. As I am getting out of the car putting my wheelchair together I see a guy in a big SUV staring at me through the driver window. By staring I mean a bold face stare. I am clearly fascinating. I am rushing in large part because I do not want to get drenched. Off I go to the post office and supermarket. Taxes are on their way and I have beer to go with my dinner. What more could a man want? As I am getting back into the car the same man in the SUV is staring at me. Again, a bold face stare. Now I am annoyed. I stare back, glare actually. He does not get it. And yes it is still raining hard. The man rolls down his window and the following exchange takes place:
Me: The show is over, stop staring.
Man: Wow, it is amazing how you get that wheelchair in and out of the car.
Me: Stop staring, you are being rude.
Man: I am a nice guy. You are amazing.
Me: You are not being nice, you are being rude.
Man: Why are you mad? You are amazing. I am nice.
Me: No, you are being rude. I do not want to be stared at. I do not like it. Stop staring.
Man: It is cool the way you put the wheelchair together. I like to watch.
Me. The show is over. Stop staring you are being a jerk.
Man: Why are you people always so bitter? I am just being nice.
Me: You are not nice. You are point blank rude. Stop staring.
Exasperated, the man shakes his head like he is dealing with a difficult child. As the window goes up he says: "Some people you just can't be nice to" and suddenly yells "you ass hole".
Ah just another day in paradise. I am so glad that 20 years ago the ADA mandated that I have equal rights. I am not sure this memo is understand by more than a tiny fraction of Americans. The above exchange was hardly unusual--it happens to me on a regular basis. Call me crazy--or a bitter asshole--but I find getting my wheelchair in and out of the car as exciting as watching a bipedal person get in and out of his car. This is not "amazing" stuff and I was very clear I did not want to be stared at. To me, that is not much to ask. What is amazing to me is how rude and oblivious people can be. Is this man vaguely aware of how rude he was? Not a chance. The problem in his estimation is "you bitter people"--yes I was reduced to "you bitter people" and labeled an ass hole. Is it any wonder there are days I do not want to leave my home? Social assaults are commonplace, accepted and on rainy days like this do think they will ever stop.
Tuesday, September 27, 2011
Disasters and Disability
Earlier this month I wrote about the dreadful response of New York City's emergency preparedness program as it pertained to people with disabilities. In spite of ten years of planning and countless meetings the city was not prepared to meet the needs of people with disabilities. Emergency shelters were not accessible. School buses used to evacuate people had no lifts. Emergency announcements did not provide American Sign Language interpreters. Maps of shelter routes could not be used by people with low vision. More than one person that used a wheelchair was turned away from an emergency shelter. These are the mere highlights of the city's epic failure.
It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.
Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?
It seems quite evident to me that Mayor Bloomberg's administration has utterly failed to meet much less respect the rights of people with disabilities. Perhaps Bloomberg's indignant reaction in 2009 to Michael A Harris, a disability rights advocate whose tape recorder inadvertently went off at a press conference was a sign of trouble to come. Callous in the extreme, Bloomberg has given an encore performance. At a press conference after Hurricane Irene Bloomberg seemed to suggest that people with disabilities should rely on taxi cabs rather evacuation buses that were not accessible. Good luck with that one! Less than 2% of city taxis are accessible. And need I mention the so called taxi of tomorrow will not be accessible either. Catching an accessible cab even on the best of days is not easy.
Given the above I was heartened to read the Brooklyn Center for Independence of the Disabled and the Center for Independence of the Disabled, New York are suing the city in Federal District Court. The suit alleges that Bloomberg and the City of New York discriminate against men, women, and children with disabilities by failing to include their needs in emergency planning. To me this is self evident. New York is a hard place to live--I accept this as a matter of fact. However, I do not accept the Bloomberg administration making things harder for people with disabilities. What I see is a pattern of discrimination that has percolated throughout the tenure of the Bloomberg administration. I get a sense from reading the statements of disability rights advocates that the Bloomberg administrations listens to what they have to say and then completely disregards the rights of people with a disability. I also get a sense the failure of the city emergency preparedness program to meet the needs of people with a disability was the last straw. People, disabled people, could have died. Our risk is disproportionately and needlessly high. Hence I cannot help but conclude that Susan Dooha, Executive Director of CIDNY was correct when she observed "The aftermath of Hurricane Irene reveals a blatant disregard for the lives of persons with disabilities and clearly shows that our efforts over the past 10 years to inform the city of its shortcomings in emergency planning were largely ignored". I am not sure what it will take for the Bloomberg administration to change. Does someone need to die before the city acts?
Monday, September 26, 2011
The Last Word on Identity?
A month ago when Rachel Cohen-Rottenberg asked me to do a guest post on her blog Journeys with Autism I was stumped. The intent of the post was to "widen the disability perspective". As luck would have it on the same day Rachel wrote to me I received the latest issue of Current Anthropology. The entire issue was devoted to keywords and among them was "identity". I had my topic. Identity has been discussed at length by disability scholars and I thought the subject fit well within Rachel's desire to widen the understanding of disability. I thought the choice may be a bit esoteric but wanted to provide a wider audience with a bit of disability studies theory. Never did I think it would generate a strong response. But a strong response is what I received. Claire Roy (Life with a Severely Disabled Daughter) took me to task and prompted a second post on identity. This in turn prompted Phil Dzialo (Healing, Empowering and Thriving) and Eric (I am a Broken Man You Can't Break Me) from writing about identity as well. Claire, Phil and Eric all have profoundly disabled children. I faithfully read the blogs they maintain for two reasons. First, they are well written and thought provoking. They all write with great passion I envy. Second, their voices, those who care for profoundly disabled children and the adults they become, is largely ignored in disability studies and disability rights.
With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.
In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.
As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:
"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."
Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.
With this preamble, let me address why identity in terms of disability is important and where it fits within disability history. But I do not want to just look back, I also intend to look into the future. In my life time I identify two distinct eras in disability history. This is not an original observation. Indeed, I am building on the work of the historian and disability studies scholar Paul Longmore. Longmore wrote the first phase of disability history concerned a quest for civil rights. One could debate how successful the first phase was given how often the ADA and forty years of similar legislation has been ignored, broken and eviscerated by the Supreme Court. Even with this jaundiced assessment of the ADA it is important legislation in that the law, our civil rights, are theoretically protected. In short, the law is on our side. Another reason the ADA is important is that it is not designed to "help the handicapped" as earlier legislation was designed to do. The ADA was first and foremost civil rights legislation that aimed to empower people with disabilities. By itself this was a radical departure legally and socially and It has met with stiff resistance. People with disabilities railed against injustice and bigotry. They were politically active and took to the streets across the country. Denver, Washington, New York and other cities witnessed moving acts of civil disobedience that led to real social change. To get a sense of the disability rights movement in this regard read the archived pages of the Ragged Edge or better yet go on line to the Disability Rights and Education Defense Fund and watch the videos of protests from the 1970s. It becomes clear for the first time in American history people with disabilities were forcefully rejecting accepted notions and stereotypes about disability. I vividly recall this era as I was in college. We students with disabilities were pissed and without even knowing were forging a new identity. Yes, there is that word identity. Millions of people with disabilities across the country completely changed. No longer were we tragic figures, patients or clients of the state. No sir. We were disabled and proud. We had rights and we lobbied to pass laws to protect our civil rights.
In the words of Paul Longmore, "The first phase sought to move disabled people from the margins of society into the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-determination." The repudiation of the medical model of disability and stigma associate with disability is easy to illustrate and is self evident. The quest for self definition and disability identity is far more complex to grasp. To this day, disability identity is poorly understood. In part this lack of understanding illustrates the utter failure of disability studies within academia and beyond. Disability studies scholars have delved deeply into identity issues and yet the general public and large swaths of people with disabilities have no clue such a literature exists. Scholars such as Simi Linton, author of Claiming Disability, should be a household name but instead is unknown outside of disability studies. One reason disability studies has failed to resonate with others is it has completely divorced itself from the disability rights movement from which it emerged. This is a huge problem because disability scholars should be shedding light on disability identity.
As I perceive it, disability identity is a collective process that seeks to reinterpret old or antiquated notions. As such it is perfect fodder for an anthropologist such as myself. Like Bob Murphy before me, I can act as informant and ethnographer. And what do I see as it relates to disability identity? Total confusion. The vast majority have no clue what "Disabled and Proud" or "Deaf Pride
means. The result is a jaded view point. For example, Phil Dzialo has written in Disability Identity: A Good Idea Gone Awry?:
"I am a man! I am gay! I am black or Latina! I am a victim of abuse! I am a feminist! I am an alien! I am a born-again Christian! I am Jewish! I am a witch! I am a polygamist! I am a dork! I am disabled! I am fat and proud! And what do these "I am" statements convey about identity (if identity is a true attempt to define the Self)...not much. They classify, they categorize, they define which box to file the form into. Fundamentally, group identities de-humanize and de-personalize."
Dzialo has a point but I shudder to think what would have happened during the 1960s civil rights era if all the identities he mentions above did not perceive they had some sort of collective identity. Would Rosa Parks be unknown? Would segregation still exist? Would gays and women have equal rights? Would the ADA have been passed into law? But Dzialo is onto something here. I would suggest the time has come to move beyond not only the first but second phase of disability history. The law is on our side and there is a hazy idea disability identity exists. To me what is needed is a vibrant disability culture. We people with a disability all share a common history of oppression. We all share a struggle to be included, respected. We all rail against social injustice. We all fight for adequate social supports. We all struggle to access adequate health care. We all struggle against social oblivion. We all have experienced gross violations of our civil rights and very humanity. We all have a common bond. And most importantly we all need to come together. If we do not do this we will never be equal. So this is my call, the emergence of a third era of disability history, the emergence of a vibrant disability culture.
Sunday, September 25, 2011
Out of Touch and Different?
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.
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.
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