Search This Blog

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.

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?

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.

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
Cure research
Advocacy/legislative updates
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.