NOTE: I am not accepting any further comments unless new ground is broken. I would suggest reading this post and the long comment thread that has become repetitive.
Earlier this month I came across the name Shane Burcaw. Apparently this man wants to be on the Ellen DeGeneres show. Needless to say this effort did not impress me and I quickly concluded it was the typical use of social media by a young person. Apparently he created a twitter bomb to get the attention of Ellen, an effort that generated a little bit of press and much discussion on reddit. Thanks to Alice Wong I realize my quick dismissal of Burcaw was in error. This man highlights a divide I have written about in the past: there is a dichotomy between people such as myself that came of age well before the ADA was passed into law and those that came of age after the ADA. I refer these two groups of people as pre ADA cripples and post ADA cripples. Part of the divide is simply age. I am 53 years old. Burcaw I believe just turned 21. I have a PhD while Burcaw is earning his BA. I am married, divorced and have a son Burcaw's age. We are at very different stages of life. It is important to note these basic differences because I am severely critical of young men and women, post ADA cripples, that have not been taught about the cultural implications of disability or the history of disability based oppression. In part I am happy some young people with a disability are blissfully unaware of the sort of civil rights violations that were once common place: forced institutionalization, involuntary sterilization, and ugly laws. Yet I am also stunned at how some young people with a disability use their disability. For example, I read Burcaw's blog Laughing at My Nightmare, and was taken aback at the repeated use of trite and uninteresting lines such as: "If you can take anything from my life, it should be that a positive attitude and sense of humor can go a long way toward overcoming your own problems no matter what they are." Burcaw is portraying himself as the plucky cripple who finds humor in his situation. He states he wants to make people laugh and thinks he is good at it. Using the old line from Readers Digest he believes laughter is the best medicine. He has even formed a non profit laughingatmynightmare.com and in some videos I have seen t-shirts with the initials LMN.
Burcaw is sun shine yellow optimistic. I do not share Burcaw's optimism. I do not find him funny. In fact, he has cast himself into the deep end of the inspiration porn pool. The short video "Happiness is Always an Option" is typical inspiration porn: http://thechive.com/2013/04/10/happiness-is-always-an-option-video/ Burcaw is characterized as having "just about the best attitude a human can hope to have". Others repeatedly state Burcaw is extremely courageous and inspirational. He is funny, smart and brave. His story will blow your mind. Burcaw chimes in and states "Don't underestimate the power of a positive attitude". The mainstream media is sucking up Burcaw's inspiration porn like it is nectar of the gods or mothers milk. In contrast I sit stone faced and wonder what sort of person could possibly take this seriously. If you tube is any indication the vast majority of people think Burcaw is awesome. At you tube, My Last Days: Meet Shawn Burcaw, is twenty long minutes of platitudes. It has been viewed over 100,000 times since April 8 when it was posted. The video has been liked by over 4,000 people. A mere 21 people, yours truly included, disliked the video. Almost 700 people left comments and about 99% used the word inspirational. I just do not have the heart to embed this video.
Scott Hamilton, a former Olympic figure skater who had cancer, once used the line "the only disability in life is a bad attitude". This tag line has been used repeatedly in inspiration porn. Good visuals, meaning the more disabled a person is, the greater the impact the tag line and photo can have. The most well-known visual porn photograph I am aware of featured Oscar Pistorius running next to a little girl who, like Pistorius is a double amputee. When I see this photo I am not impressed. In fact I get angry at the disparity between the image and reality. I also think of Stella Young, an Australian disability rights advocate, who wrote "The statement the only disability in life is a bad attitude puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It's victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get Stuffed."
Get stuffed Mr. Burcaw. Your superficial notion of optimism is demeaning. It is also devoid of any factual basis. Take the image and tag line discussed above. The prostheses depicted in the photo of Pistorious and the little girl cost $20,000. Those limbs cost more than a brand new Fiat or Ford. Let me pose the following. A child who is a double amputee goal is to compete in the ParaOlympics. To succeed at this level of athleticism the child will need specialized and costly prostheses. This child's parents request the local school board to purchase such limbs. According to a recently released DOJ guidelines a powerful case could be made the school would be legally required to make such an accommodation to insure the child be empowered to participate in sports. An optimistic outlook is not going to the job done in this instance.
While I am railing against Burkaw in particular it is not him I am upset with. He is just one of many people that fails to realize inspiration porn shames all people with a disability. An optimistic outlook gets one only so far. The fact is Burcaw happily dismisses the glaring social problems associated with disability. The social situation people with a disability confront is not funny or inspirational. In fact to understand disability as an example of civil rights or human rights violations requires much thought and an intellectual leap in logic. Not many have made this leap in logic. It is all too easy not to mention rampant unemployment or the utter lack of accessible housing. No mention is made of inaccessible subway systems or the systemic pattern of abuse directed at people with a disability on the part of major airlines when they try to fly from place to place. Burcaw I would suggest should stop trying to get on the Ellen DeGeneres show and spend a bit of time reading about disability rights. There is a vast literature available at every major college in the country. In fact I have an even better suggestion. He should join ADAPT and join those that will soon descend upon Washington DC.
Wednesday, April 17, 2013
Tuesday, April 16, 2013
ReWalk: A Plea for Common Sense
I have blasted news reports that gush about the exoskeleton. Typical news stories consider the exoskeleton a "miracle" that enables paralyzed people to walk again. References to Iron Man abound as do comparisons to being "wheelchair bound" versus being a "super hero". The message is not subtle: walking is the best means of locomotion. Using a wheelchair is inherently bad. A wheelchair is an antiquated piece of technology and the exoskeleton is here to rescue paralyzed people who are "bound" to their wheelchair. This line of reasoning is misleading at best and relies on ignorance. From my perspective, I think a wheelchair is a phenomenal invention. It makes my life go. It makes the lives of millions of people go. It is essential technology with a long history of success. A wheelchair is a powerful symbol of empowerment. This is not the way the vast majority of people perceive a wheelchair. In fact the wheelchair is the symbolic icon for all things disability.
While I despise the symbolic implications of the exoskeleton, I will acknowledge it is worthy of research. The human body was not designed to be paralyzed. I know this from first hand experience and I cannot recommend the experience. There are a host of health related problems associated with paralysis. There are also a host of solutions for paralysis specific health problems. With time, education, social supports for needed durable medical goods virtually all health related problems associated with paralysis can be avoided. I am extremely skeptical of the clinical use and utility of the exoskeleton especially when compared to well established rehabilitation methods. There is no escaping the fact the exoskeleton is sexy. There is also no escaping the fact traditional rehabilitation is decidedly un-sexy. Since the first Iron Man movie came out in 2008 the exoskeleton has been at the forefront of the imagination. It is fun to imagine a man in the exoskeleton hurling cars. No need to ticket or tow a car out of handicapped parking! Reality however is quite different.
The exoskeleton emerged from the military industrial complex. Corporations such as Raytheon and Lockheed Martin have gone through a host of exoskeleton type devices. The military use of the exoskeleton is not hard to figure out--musculoskeleton injuries are the leading cause of disability among soldiers. These injuries could be prevented if soldiers could carry more weight without straining their bodies. Enter the exoskeleton. As near as I can determine Raytheon is out o the exoskeleton business. Lockhead Martin has the "Human Universal Load Carrier" (HULC). The Defense Advanced Research Projects Agency (DARPA) appears to have already abandoned the hard exterior shelled exoskeleton in favor a "warrior web". This may sound cool but is not. Gone is the idea of super soldiers throwing cars and tanks and enter a light weight suit that empowers a soldier to carry heavy loads without strain on the body. The point I am trying to get at is that the exoskeleton is a cash cow. Commercially the biggest beneficiary is Ekso Bionics, a California based company. Ekso Bionics has been working very hard to get the exoskeleton into rehabilitation hospitals and the homes of paralyzed people. This worries me. Russ Arnold, the chief technology officer at Ekso Bionics has stated "Our goal is to get the exoskeleton out to the home. Instead of going to a rehab center they can do rehab in their home". I am sure this is music to the ears of health insurance companies. Think of the savings! No rehab. No nursing. No physical therapy. No Occupational therapy. No expensive durable medical goods. We can just buy an exoskeleton and be done with a potentially expensive life. It is no wonder the cure industry and health insurance companies are thrilled with the exoskeleton. This is one stop shopping.
The media buys into the utility of the exoskeleton without reservation. Everyone wants to walk. This is a given. The exoskeleton is the essence of cool. The rehabilitation business loves the exoskeleton too. It is the best, newest and most advanced form of technology. We can hire a bunch of technology guys and do away with as many health care professionals as humanly possible. And we all know technology can cure all our problems. Talk about a patient magnet! Thus when I read about the exoskeleton in the newspapers my heart sinks. Newly paralyzed men and women are going to be seduced into thinking they will walk again. Remember walking is good being wheelchair bound is bad. Again, it is possible the exoskeleton has some utility. I differ in that I cannot escape at what cost, symbolic and practical, will the exoskeleton have?
The New York Daily News had a long story about the exoskeleton: "Bronx VA Doctor Helps Paraplegics Walk with Exoskeletons". See link: http://www.nydailynews.com/life-style/health/doctor-helps-parapalegics-walk-exoskeletons-article-1.1315915?print The article in question is typical superficial heart wrenching crap. Ann Spungen, lead researcher and MD gushes "In 22 years that I have been working in this field, its the most exciting intervention to come along". Apparently the exoskeleton is being studied at the James J. Peters VA Medical Center in the Bronx. Nine men and women who are paralyzed are involved. The VA is using the $60,000 Israeli model called the "ReWalk". According to the Daily News the "ReWalk has been a "life-changer". I agree. The ReWalk could change lives but not for the reasons lauded. The VA and its researchers have far more modest goals. Funding provided by the National Institute for Health (NIH) is designed to demonstrate that the "exoskeleton walking device permits investigation of the potential benefits of frequent upright posture and walking on many of the secondary consequences of spinal cord injury. The exoskeleton is about walking within very strict parameters. The exoskeleton is being studied to perhaps alleviate the "extreme sedentary lifestyle from paralysis that contribute to many secondary medical problems such a diabetes and insulin resistance, obesity, constipation, poor blood pressure regulation, cardiovascular disease, reduced quality of life and more".
Technically the headline of the Daily News article is correct. The ReWalk is helping paralyzed men and women walk again. This effort however has nothing to do with functional walking. Thus I find the story grossly misleading. The ReWalk is about walking as it relates to well-known complications associated with paralysis. This is not a sexy story but the reality of life with paralysis. I doubt people want to hear about how the bowel habits of the participants that have changed for the better. Comments such as "I am no longer constantly constipated and my blood pressure is rock solid" does not sell newspapers. What struck me though was the purpose of the study conducted by Ann Spungen: "the extreme sedentary lifestyle from paralysis". Why is the all important question here. Why do many paralyzed people experience secondary medical complications caused by an extreme sedentary lifestlye? I can think of much better approaches to this. Provide an extended rehabilitation experience. Do not discharge a person until they have firm control of their bladder and bowels. Be sure a person is aware of the complications associated with paralysis and knows what to do if something occurs. Provide your typical paraplegic, male or female, with a state of the art and well fitted wheelchair. Design an exercise program for this person and expose them to a host of different adaptive sports programs. This is why I seethe when I read about the exoskeleton. Researchers are happy to shell out $60,000 on an exoskeleton. But the same researchers will never get to funding for a high end Panthera X wheelchair that costs $11,000. Forget about a handcycle for biking. They cost $3,000 and up. No sit ski either. These cost $4,000 and upwards. How about a racing wheelchair for exercise. No chance. Forget about a good wheelchair cushion to prevent pressure sores. These are too costly as well. And what about a job that requires a typical commute and empowers a paralyzed person?
Lets do a little basic math. Exoskeleton $60,000. This will require computer expert and multiple specialists in health care who earn a good living. Contrast this with a research program that after exposing a person to various outdoor activities will purchase the following: $11,000 wheelchair, $500 wheelchair cushion, a $5,000 handcycle, a $4,000 sit ski and most importantly a job training program that allows for an initially flexible schedule. Total material costs are a little over $20,000. I would be willing to bet a newly paralyzed person that received this sort of support would thrive. I bet an extreme sedentary lifestyle would be unimaginable. The sort of program I suggested can change lives for the better after a spinal cord injury. Instead a questionable military based idea gets all the funding. This is the perfect storm of misplaced symbolism associated with walking, corporate spin, and profit, combined with our love affair with technology.
Here is what I envisioned two summers ago over a camp fire in the Red Woods outside of Santa Cruz. I will admit some drinking of adult beverages was involved. The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. Better yet, there was an endless supply of duct tape. Joking aside, the vast majority of problems associated with paralysis can be mitigated. What is absent are the social and practical supports that make one's life possible. We people who experience a paralyzing injury do not need the exoskeleton. Our needs are more basic: a good long lasting wheelchair and cushion, affordable adaptive sport gear if desired, job training, transportation, and housing. With these typical needs in place an extreme sedentary life will be easily avoided.
While I despise the symbolic implications of the exoskeleton, I will acknowledge it is worthy of research. The human body was not designed to be paralyzed. I know this from first hand experience and I cannot recommend the experience. There are a host of health related problems associated with paralysis. There are also a host of solutions for paralysis specific health problems. With time, education, social supports for needed durable medical goods virtually all health related problems associated with paralysis can be avoided. I am extremely skeptical of the clinical use and utility of the exoskeleton especially when compared to well established rehabilitation methods. There is no escaping the fact the exoskeleton is sexy. There is also no escaping the fact traditional rehabilitation is decidedly un-sexy. Since the first Iron Man movie came out in 2008 the exoskeleton has been at the forefront of the imagination. It is fun to imagine a man in the exoskeleton hurling cars. No need to ticket or tow a car out of handicapped parking! Reality however is quite different.
The exoskeleton emerged from the military industrial complex. Corporations such as Raytheon and Lockheed Martin have gone through a host of exoskeleton type devices. The military use of the exoskeleton is not hard to figure out--musculoskeleton injuries are the leading cause of disability among soldiers. These injuries could be prevented if soldiers could carry more weight without straining their bodies. Enter the exoskeleton. As near as I can determine Raytheon is out o the exoskeleton business. Lockhead Martin has the "Human Universal Load Carrier" (HULC). The Defense Advanced Research Projects Agency (DARPA) appears to have already abandoned the hard exterior shelled exoskeleton in favor a "warrior web". This may sound cool but is not. Gone is the idea of super soldiers throwing cars and tanks and enter a light weight suit that empowers a soldier to carry heavy loads without strain on the body. The point I am trying to get at is that the exoskeleton is a cash cow. Commercially the biggest beneficiary is Ekso Bionics, a California based company. Ekso Bionics has been working very hard to get the exoskeleton into rehabilitation hospitals and the homes of paralyzed people. This worries me. Russ Arnold, the chief technology officer at Ekso Bionics has stated "Our goal is to get the exoskeleton out to the home. Instead of going to a rehab center they can do rehab in their home". I am sure this is music to the ears of health insurance companies. Think of the savings! No rehab. No nursing. No physical therapy. No Occupational therapy. No expensive durable medical goods. We can just buy an exoskeleton and be done with a potentially expensive life. It is no wonder the cure industry and health insurance companies are thrilled with the exoskeleton. This is one stop shopping.
The media buys into the utility of the exoskeleton without reservation. Everyone wants to walk. This is a given. The exoskeleton is the essence of cool. The rehabilitation business loves the exoskeleton too. It is the best, newest and most advanced form of technology. We can hire a bunch of technology guys and do away with as many health care professionals as humanly possible. And we all know technology can cure all our problems. Talk about a patient magnet! Thus when I read about the exoskeleton in the newspapers my heart sinks. Newly paralyzed men and women are going to be seduced into thinking they will walk again. Remember walking is good being wheelchair bound is bad. Again, it is possible the exoskeleton has some utility. I differ in that I cannot escape at what cost, symbolic and practical, will the exoskeleton have?
The New York Daily News had a long story about the exoskeleton: "Bronx VA Doctor Helps Paraplegics Walk with Exoskeletons". See link: http://www.nydailynews.com/life-style/health/doctor-helps-parapalegics-walk-exoskeletons-article-1.1315915?print The article in question is typical superficial heart wrenching crap. Ann Spungen, lead researcher and MD gushes "In 22 years that I have been working in this field, its the most exciting intervention to come along". Apparently the exoskeleton is being studied at the James J. Peters VA Medical Center in the Bronx. Nine men and women who are paralyzed are involved. The VA is using the $60,000 Israeli model called the "ReWalk". According to the Daily News the "ReWalk has been a "life-changer". I agree. The ReWalk could change lives but not for the reasons lauded. The VA and its researchers have far more modest goals. Funding provided by the National Institute for Health (NIH) is designed to demonstrate that the "exoskeleton walking device permits investigation of the potential benefits of frequent upright posture and walking on many of the secondary consequences of spinal cord injury. The exoskeleton is about walking within very strict parameters. The exoskeleton is being studied to perhaps alleviate the "extreme sedentary lifestyle from paralysis that contribute to many secondary medical problems such a diabetes and insulin resistance, obesity, constipation, poor blood pressure regulation, cardiovascular disease, reduced quality of life and more".
Technically the headline of the Daily News article is correct. The ReWalk is helping paralyzed men and women walk again. This effort however has nothing to do with functional walking. Thus I find the story grossly misleading. The ReWalk is about walking as it relates to well-known complications associated with paralysis. This is not a sexy story but the reality of life with paralysis. I doubt people want to hear about how the bowel habits of the participants that have changed for the better. Comments such as "I am no longer constantly constipated and my blood pressure is rock solid" does not sell newspapers. What struck me though was the purpose of the study conducted by Ann Spungen: "the extreme sedentary lifestyle from paralysis". Why is the all important question here. Why do many paralyzed people experience secondary medical complications caused by an extreme sedentary lifestlye? I can think of much better approaches to this. Provide an extended rehabilitation experience. Do not discharge a person until they have firm control of their bladder and bowels. Be sure a person is aware of the complications associated with paralysis and knows what to do if something occurs. Provide your typical paraplegic, male or female, with a state of the art and well fitted wheelchair. Design an exercise program for this person and expose them to a host of different adaptive sports programs. This is why I seethe when I read about the exoskeleton. Researchers are happy to shell out $60,000 on an exoskeleton. But the same researchers will never get to funding for a high end Panthera X wheelchair that costs $11,000. Forget about a handcycle for biking. They cost $3,000 and up. No sit ski either. These cost $4,000 and upwards. How about a racing wheelchair for exercise. No chance. Forget about a good wheelchair cushion to prevent pressure sores. These are too costly as well. And what about a job that requires a typical commute and empowers a paralyzed person?
Lets do a little basic math. Exoskeleton $60,000. This will require computer expert and multiple specialists in health care who earn a good living. Contrast this with a research program that after exposing a person to various outdoor activities will purchase the following: $11,000 wheelchair, $500 wheelchair cushion, a $5,000 handcycle, a $4,000 sit ski and most importantly a job training program that allows for an initially flexible schedule. Total material costs are a little over $20,000. I would be willing to bet a newly paralyzed person that received this sort of support would thrive. I bet an extreme sedentary lifestyle would be unimaginable. The sort of program I suggested can change lives for the better after a spinal cord injury. Instead a questionable military based idea gets all the funding. This is the perfect storm of misplaced symbolism associated with walking, corporate spin, and profit, combined with our love affair with technology.
Here is what I envisioned two summers ago over a camp fire in the Red Woods outside of Santa Cruz. I will admit some drinking of adult beverages was involved. The men present at this campfire decided to form a club called Shit and Piss. If we could get every man and woman who was paralyzed to shit and piss with ease the world would be a better place. Classic lines were exchanged such as "Man, the way you manage your bladder sucks". Much laughter ensued. Better yet, there was an endless supply of duct tape. Joking aside, the vast majority of problems associated with paralysis can be mitigated. What is absent are the social and practical supports that make one's life possible. We people who experience a paralyzing injury do not need the exoskeleton. Our needs are more basic: a good long lasting wheelchair and cushion, affordable adaptive sport gear if desired, job training, transportation, and housing. With these typical needs in place an extreme sedentary life will be easily avoided.
Wednesday, April 10, 2013
Restoring Faith in People
I truly was bothered by my experience over handicapped parking that I wrote about. Today I was doing errands and came across a common problem--shopping carts filling up handicapped parking spots. One strip mall in Connecticut is particularly bad in this regard. The strip mall has a Trader Joe's, big box office store, and Rite Aide among other smaller shops. As I was pulling out of handicapped parking I saw a woman leave her shopping cart. I thought do I or don't I? Do I really want to risk being called a "bitter" man whose soul is rotten? Wow, what a difference a day makes. I rolled down my window and said excuse me, "Do you know that if you leave the cart with all the others it will make the spot useless for most people with a disability"? The response was "I had no idea. I am sorry. I will never do that again." I added that I have asked store owners to try and stay on top of the carts blocking handicapped parking. No change has taken place. This woman replied "I am going to complain every time I go to Trader Joe's. I will also move the carts whenever possible". This seems to be the appropriate response if not a bit over the top. Friendly and pro active is a good thing. Even if she never complains and simply moves one cart from handicapped parking progress has been made. Perhaps she will tell others. In my dreams a veritable snowball going down hill will be created. I will never see a shopping cart in handicapped parking. Sadly this is grossly optimistic but a man can dream. And I want to note I did not make a single complaint about why twenty plus years after the ADA was passed into law I still need to educate people about disability.
Tuesday, April 9, 2013
Handicap Parking and Bitterness
I lost my temper last night. This is exceedingly rare because I very rarely lose my temper. When I do lose my temper it is with good reason. Last night was ugly and I share some blame in the confrontation I had. I was teaching last night. My class meets once a week and ends around 9:30PM. It is a big class, about 30 students. I try to keep a discussion going but it is not always possible given the size of the class. Few students are willing to speak up in a classroom filled with so many people. I get this especially since I was mute as an undergraduate and never spoke in class. Last night was rough. I consider this the doldrums of the Spring semester. The mid term is over and a well established pattern has been set. The weather is getting warmer and student minds are wandering. In short, I have to work very hard to maintain student interest. At the end of class I am very tired.
The above sets the stage. I am ready to leave and look at the clock. It is 10PM. I am more tired than usual and look forward to my rum and coke before I go to sleep. I parked nearby in handicapped parking because my brief case is always heavy. It takes two seconds to realize I am screwed. A car is parked inches away from the passenger door (I get in on the passenger side) and is blocking the curb cut. It is dark and late. I am alone without any way to get in my car. My cell phone battery is dead. I wait a few minutes hoping the person blocking me in will appear. Waiting seems fruitless so I find the nearest curb cut in the poorly lit parking lot and seek out a campus phone. I call security who are not impressed with my predicament. I get a cursory we will send someone over. As I head back to my car it does not take much imagination to realize I am screwed. I am officially tired and angry. My options are severely limited. Security will show up eventually. They can ticket the car or even tow it. This will take time--lots and lots of time. I get angrier because this is hardly an isolated event as it happens far too often. Suddenly I see the lights on the car blocking me flicker to life. I see a woman my age and what I presume to be her son walk toward me. Again, I am angry. I ask in a clear and somewhat loud voice "Do you realize you are in handicapped parking and are blocking the ramp". I get a cursory "sorry". The body language and attitude is clear--this woman does not care one iota. She is annoyed by my presence. I am mad. She is confrontational--I get it. Again I accept some blame in what transpired. I tell her "Your sorry does not do me any good. I have been waiting around and I have called security". She replies "You people are so bitter. I said I am sorry". By her tone and body language "I am sorry" translates into "fuck you". I reply "It is the law. The law states you cannot park here without a permit. I have been forced to wait." She replies "So, I said I am sorry. You are bitter and will pray for your rotten soul". My anger increases quickly as she goes on to say "You just want to take your bitterness out on others". Stunned and furious I am very tempted to wait behind her car so she cannot exit. It takes about two seconds to realize this idea is counter productive. This woman subscribes to an antiquated notion of what disability entails. I am clearly subhuman. In her estimation I am bitter and in need of charity and her prayers.
I am still upset about last night. She is not the first nor last person to state I am "bitter". Bitter in this woman's estimation means I am bitter about my paralysis, my plight in life and fact I use a wheelchair. I am the cripple archetype. She on the other hand is virtuous. In spite of my anger she will pray for my "rotten soul". I am supposed to be grateful for her charity and pity. Her perception of disability was formed long ago. She went to segregated schools. Prior to 1975 people like me were not permitted to enter schools and receive an education. The crippled were sent to institutions and people prayed for us. The crippled did not get on the bus. The crippled did not get on a plane. The crippled did not get on the train. The crippled did not have a job. The crippled were out of sight and out of mind. I despise this line of reasoning and history of oppression. Here is why I remain upset: this woman, like me, is an archetype. Millions of Americans think disability is inherently bad and that all crippled people are bitter. My problem in this woman's estimation is about one thing: my inability to walk. She utterly fails to see disability from any other perspective. This requires a leap of logic millions of people fail to make. It is not the crippled body that is at fault--it is the refusal to value that body. The incident last night was minor but is symbolic of a much larger social problem. Note the words "social problem". Disability as Robert Murphy noted long ago is a social malady and the woman I met last night has a social disease--pun intended.
So am I still angry? You bet I am. I am angry because this woman is a lost cause. She will never learn or change her views. She is but one of millions of people that have an antiquated and demeaning perception of disability. This is easily explained away because I am bitter and all blame rests on my shoulders. Well, this bitter man remembers the woman's license plate number from last night. A silver Suburu with Connecticut plates 765 YOA.
The above sets the stage. I am ready to leave and look at the clock. It is 10PM. I am more tired than usual and look forward to my rum and coke before I go to sleep. I parked nearby in handicapped parking because my brief case is always heavy. It takes two seconds to realize I am screwed. A car is parked inches away from the passenger door (I get in on the passenger side) and is blocking the curb cut. It is dark and late. I am alone without any way to get in my car. My cell phone battery is dead. I wait a few minutes hoping the person blocking me in will appear. Waiting seems fruitless so I find the nearest curb cut in the poorly lit parking lot and seek out a campus phone. I call security who are not impressed with my predicament. I get a cursory we will send someone over. As I head back to my car it does not take much imagination to realize I am screwed. I am officially tired and angry. My options are severely limited. Security will show up eventually. They can ticket the car or even tow it. This will take time--lots and lots of time. I get angrier because this is hardly an isolated event as it happens far too often. Suddenly I see the lights on the car blocking me flicker to life. I see a woman my age and what I presume to be her son walk toward me. Again, I am angry. I ask in a clear and somewhat loud voice "Do you realize you are in handicapped parking and are blocking the ramp". I get a cursory "sorry". The body language and attitude is clear--this woman does not care one iota. She is annoyed by my presence. I am mad. She is confrontational--I get it. Again I accept some blame in what transpired. I tell her "Your sorry does not do me any good. I have been waiting around and I have called security". She replies "You people are so bitter. I said I am sorry". By her tone and body language "I am sorry" translates into "fuck you". I reply "It is the law. The law states you cannot park here without a permit. I have been forced to wait." She replies "So, I said I am sorry. You are bitter and will pray for your rotten soul". My anger increases quickly as she goes on to say "You just want to take your bitterness out on others". Stunned and furious I am very tempted to wait behind her car so she cannot exit. It takes about two seconds to realize this idea is counter productive. This woman subscribes to an antiquated notion of what disability entails. I am clearly subhuman. In her estimation I am bitter and in need of charity and her prayers.
I am still upset about last night. She is not the first nor last person to state I am "bitter". Bitter in this woman's estimation means I am bitter about my paralysis, my plight in life and fact I use a wheelchair. I am the cripple archetype. She on the other hand is virtuous. In spite of my anger she will pray for my "rotten soul". I am supposed to be grateful for her charity and pity. Her perception of disability was formed long ago. She went to segregated schools. Prior to 1975 people like me were not permitted to enter schools and receive an education. The crippled were sent to institutions and people prayed for us. The crippled did not get on the bus. The crippled did not get on a plane. The crippled did not get on the train. The crippled did not have a job. The crippled were out of sight and out of mind. I despise this line of reasoning and history of oppression. Here is why I remain upset: this woman, like me, is an archetype. Millions of Americans think disability is inherently bad and that all crippled people are bitter. My problem in this woman's estimation is about one thing: my inability to walk. She utterly fails to see disability from any other perspective. This requires a leap of logic millions of people fail to make. It is not the crippled body that is at fault--it is the refusal to value that body. The incident last night was minor but is symbolic of a much larger social problem. Note the words "social problem". Disability as Robert Murphy noted long ago is a social malady and the woman I met last night has a social disease--pun intended.
So am I still angry? You bet I am. I am angry because this woman is a lost cause. She will never learn or change her views. She is but one of millions of people that have an antiquated and demeaning perception of disability. This is easily explained away because I am bitter and all blame rests on my shoulders. Well, this bitter man remembers the woman's license plate number from last night. A silver Suburu with Connecticut plates 765 YOA.
Saturday, April 6, 2013
Fear Exists for a Good Reason
Over the past week I have followed the story of Amanda Baggs via various neurodiversity blogs. Baggs who I mentioned in my 500th post is an Autistic and a fascinating writer. She is most well known for her You Tube video "In My Own Language". Based on what I read, Baggs had gastroparesis that caused several instances of of aspiration pneumonia. As I understand it Baggs needed a feeding tube inserted to increase her nutrition and lower the risk of aspiration. This is not complex medical care--I suspect it is standard operating procedure. But her experience has been anything but standard. Multiple neurodiversity blogs and people directly in contact with Baggs have reported she was repeatedly questioned about her decision to get a feeding tube. Thankfully the neurodiversity community in particular and the disability community in general leaped to help and protect Baggs. Her experience in a Burlington Vermont hospital was a nightmare. Fortunately she not only survived but is in fighting spirit. She is writing about what she experienced and its implications. See: http://youneedacat.tumblr.com/
I was deeply moved by Baggs most recent post. What she wrote today is shocking and a testament to how deeply ingrained disability based bigotry is within the American health care system. Below is her entire post.
I was deeply moved by Baggs most recent post. What she wrote today is shocking and a testament to how deeply ingrained disability based bigotry is within the American health care system. Below is her entire post.
“Are you at peace with your decision?”
Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.
He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.
“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.
I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.
And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.
Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.
I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.
Because we don’t just naturally want to die the moment our body requires some kind of nonstandard way of sustaining itself. Right now I am hooked up to a machine pumping food into my intestines and I LOVE IT BECAUSE IT MEANS LIFE.
Genteel pressure to die. I too experienced that genteel pressure. Such pressure is put in ever so polite terms. For Baggs it was "Would you like to consider alternative treatments"? The non genteel interpretation is "Would you like to die"? For me a hospitalist stated "We can make you comfortable if you decide to forego antibiotics". The non genteel interpretation: "We can let you die." This genteel pressure to die is not out of the norm. In fact I cringe when I hear the term "patient centered care". My translation of "patient centered care" is "you are on your own". Being on your own in a hospital is dangerous for any person but for a person with a disability the risks are exponentially greater. We people with a disability represent the limits of medical science and its failure. We are perceived to be in pain; suffering horrific indignities because we have lost our autonomy. Our bodies are compromised, abnormal. We are confined to a wheelchair. We are bed bound. Our life is a disaster. But wait! There is hope. We miserable cripples have the power to say no more. Hence the physician "caring" for Baggs asks "Are you at peace with your decision". The internists and residents that accompanied the physician have learned a lesson in empathy--or at least that is likely what the physician in question believed. I would offer the lesson learned was much more basic. Death is preferable to living a life with a disability. Who would want to live like that? Imagine if you had Autism. How horrible. I suggest we need to ask a very different set of questions. In Baggs case, the question is not if you want to live but rather how we can we as physicians charged with your care empower you to live a full life.
Thursday, April 4, 2013
Girl with a Cane Asks Important Questions
I read many disability related blogs. I am particularly drawn to blogs from different countries. One blog I read on a regular basis is Girl with the Cane written by Canadian Sarah Levis, a freelance writer, who has a vascular condition in her brain called an arteriovenous malformation. Levis often writes about disability issues in Canada and the United States. Today I read her latest post "Why Do Mike Rice and his Basketball Team Matter More than Disabled People". See: http://www.girlwiththecane.com/mike-rice/
For those not interested in college basketball, Mike Rice was fired as head coach of the Rutgers University basketball team. Video of Rice berating his players verbally and physically went viral. In the last 48 hours it has been hard to avoid this story--think total media saturation. Levis asks a very interesting question: "why do these stories get so much coverage and generate so much outrage"? Levis contrasts the media saturation about Rice with disability related stories that garner scant attention. She mentions the Judge Rotenberg Center where electric shock was used to discipline children which was declared torture by the UN; restraint and seclusion in secondary schools; the wide spread abuse found in NY State group homes. Levis pointedly asks NJ Governor Chris Christie why he has issued a statement about Rice but failed to attend the Joint Legislative Hearing on the closing of two institutions in NJ.
I share Levis frustration. I too wonder why stories about disability are rarely deemed news worthy. I also wonder why the few stories that do hit the news are framed in a way that reduces disability to antiquated stereotypes. The mainstream media excels at what many people with a disability identify as inspiration porn. Think Oscar Pistorius, the fastest man with no legs or Christopher Reeve whose life concerned one thing--cure for spinal cord injury. These men produced awesome visuals the media sucks up like nectar of the gods. People who know nothing about disability are inspired and brought to tears. Misleading leaps to the forefront of my mind. Disability is not well represented by men like Pistorius and Reeve.
Levis post reminded of a book I loved--The Short Bus by Jonathan Mooney. If you ever want to prompt a strong reaction among a group of people with a disability just bring up the topic of the short bus. Loud groans will be heard and bitter complaints. The short bus came into being in 1975 via the Individual with Disabilities Education Act (IDEA). The intent was good--children with disabilities had the right to an education, a first in American history. However, IDEA made no mention of how to get students with disabilities to and from school. Enter the short bus or as I prefer to call it segregated transportation. The short bus quickly became the symbol of special education and served a specific social function. Mooney wrote:
Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus police that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.
The short bus is still widely utilized. Thus it is no wonder disability is badly misunderstood among members of the media. We teach children from their initial entry into the educational system that the segregation of people with a disability is the norm. We have special buses and special education. We have special resource rooms. The message is clear: we are different, inferior. We are not worthy as Levis stated. We are not important, our civil rights are different. Given this important issues related to disability will continue to be ignored by the mainstream media. While this is undoubtedly a gloomy assessment I am hopeful social media has the power to change the social situation of people with a disability. There is a vibrant online community of disability related bloggers. There are Facebook pages dedicated to disability rights. Disability studies programs exist on university campuses. The wall of exclusion is being undermined and I hope to see it reduced to rubble in my life time. A guy has gotta hope, eh.
For those not interested in college basketball, Mike Rice was fired as head coach of the Rutgers University basketball team. Video of Rice berating his players verbally and physically went viral. In the last 48 hours it has been hard to avoid this story--think total media saturation. Levis asks a very interesting question: "why do these stories get so much coverage and generate so much outrage"? Levis contrasts the media saturation about Rice with disability related stories that garner scant attention. She mentions the Judge Rotenberg Center where electric shock was used to discipline children which was declared torture by the UN; restraint and seclusion in secondary schools; the wide spread abuse found in NY State group homes. Levis pointedly asks NJ Governor Chris Christie why he has issued a statement about Rice but failed to attend the Joint Legislative Hearing on the closing of two institutions in NJ.
I share Levis frustration. I too wonder why stories about disability are rarely deemed news worthy. I also wonder why the few stories that do hit the news are framed in a way that reduces disability to antiquated stereotypes. The mainstream media excels at what many people with a disability identify as inspiration porn. Think Oscar Pistorius, the fastest man with no legs or Christopher Reeve whose life concerned one thing--cure for spinal cord injury. These men produced awesome visuals the media sucks up like nectar of the gods. People who know nothing about disability are inspired and brought to tears. Misleading leaps to the forefront of my mind. Disability is not well represented by men like Pistorius and Reeve.
Levis post reminded of a book I loved--The Short Bus by Jonathan Mooney. If you ever want to prompt a strong reaction among a group of people with a disability just bring up the topic of the short bus. Loud groans will be heard and bitter complaints. The short bus came into being in 1975 via the Individual with Disabilities Education Act (IDEA). The intent was good--children with disabilities had the right to an education, a first in American history. However, IDEA made no mention of how to get students with disabilities to and from school. Enter the short bus or as I prefer to call it segregated transportation. The short bus quickly became the symbol of special education and served a specific social function. Mooney wrote:
Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus police that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us.
The short bus is still widely utilized. Thus it is no wonder disability is badly misunderstood among members of the media. We teach children from their initial entry into the educational system that the segregation of people with a disability is the norm. We have special buses and special education. We have special resource rooms. The message is clear: we are different, inferior. We are not worthy as Levis stated. We are not important, our civil rights are different. Given this important issues related to disability will continue to be ignored by the mainstream media. While this is undoubtedly a gloomy assessment I am hopeful social media has the power to change the social situation of people with a disability. There is a vibrant online community of disability related bloggers. There are Facebook pages dedicated to disability rights. Disability studies programs exist on university campuses. The wall of exclusion is being undermined and I hope to see it reduced to rubble in my life time. A guy has gotta hope, eh.
Wednesday, April 3, 2013
Inside Every Cripple a Non Disabled Person is Trying to Get Out
I am having a good morning. The comments on my 500th post and by extension on Facebook have cheered me up. There are other people fighting the good fight. There are people who get how deadly ableism is, that is our ingrained bias against people with a disability. The issue for is why. Why do the vast majority of Americans have no clue what ableism mean? Why do people fail to equate disability rights with civil rights? Why are people resistant to go against the grain and question entrenched beliefs that make no sense? More specifically, why do health care professionals take such a dim view of life with a disability? In part, people with a disability are the symbolic representation of the limits of medical science. Health care professionals, public schools, and a host of other institutions do not know how to react when people with a disability thrive. We are not following our prescribed roles as tragic failures. Complicating matters further is fear--people with a disability are feared. Thus at a practical and symbolic level people with a disability call into question the utility of science and technology. How does this play out in the real world? In the case of spinal cord injury people without a disability gush over impractical and essentially worthless technology such as the exoskeleton. Much time is wasted encouraging newly paralyzed men and women to learn how to "walk". This is problematic. Symbolically, the use of a exoskeleton sends the message walking is good using a wheelchair is bad. Instead of pushing a newly paralyzed person to walk and investigate stem cell research I would argue figuring out how to manage one's bladder and bowels is far more important.
Culturally, technology reigns supreme and the hard work it takes for a person with a disability to navigate the world is not valued. Daniel Callahan maintains that we have created a "beast". That is technology has replaced care; what was once the bedrock of the medical sciences. This directly affects people with a disability because we are perceived as failures. Technology we revere did not cure us. This is a personal tragedy. Note the word personal. The idea disability is a uniquely individual experience permits and empowers ableism. This cultural assumption enables a host of social violations to occur because people with a disability are not a unique and distinct minority group. People with a disability are losers. Worse yet, if people with a disability really tried hard enough, think Christopher Reeve, they would spend their time overcoming their disability. This thought crossed my mind when I was reading about Marshal Sahlins, an eminent anthropologist, who resigned from the National Academy of Science in protest over the NAS election of Napoleon Chagnon. This has generated a heated debate within anthropology. I reread an interview with Sahlins in Dissent and was struck by the following quote:
The premise of American overseas aggression, according to Donald Rumsfeld and others, is something like the line in the movie Full Metal Jacket: “inside every gook there is an American trying to get out.” All we have to do to liberate this innately freedom-loving, self-interested, democracy-needing, capitalist-in-waiting is to rid him of the oppressive, evil-minded regime holding him down—by force if necessary. That is, Chagnon’s view of self-aggrandizing human nature is the sociobiological equivalent of the neocon premise of the virtues of American imperialism: making the world safe for self-interest. It is the same native Western ideology of the innate character of mankind. A huge ethnocentric and egocentric philosophy of human nature underlies the double imperialism of our sociobiological science and our global militarism.
It does not require a stretch of the imagination to replace "inside every gook" with "inside every disabled person" there is an able bodied American trying to get out. I would argue we need to ask an entirely different set of questions. This is something Jackie Leech Scully has proposed in her book Disability Bioethics. Deaf for almost thirty years, Scully wrote that no person had ever asked her "what is it like to hear as you do"" Instead, people have asked me "How much can you hear"? Similarly, people have asked me "How long have you been paralyzed"? instead of "What does it feel like to be paralyzed"? These questions are profoundly different. One is asking about the experience of deafness or paralysis the other sets one up to fail; the standard or norm is created by the questioner and assumes a terrible flaw exists. The impairment is the start and end of the narrative. The disability is firmly tied to an individual. In pushing people to ask a totally different set of questions it is my hope people will come to a fundamental conclusion--disability is normal, it is an integral part of the life cycle and human history. What was once a singularly uniques story becomes a social problem that deserves careful consideration.
Culturally, technology reigns supreme and the hard work it takes for a person with a disability to navigate the world is not valued. Daniel Callahan maintains that we have created a "beast". That is technology has replaced care; what was once the bedrock of the medical sciences. This directly affects people with a disability because we are perceived as failures. Technology we revere did not cure us. This is a personal tragedy. Note the word personal. The idea disability is a uniquely individual experience permits and empowers ableism. This cultural assumption enables a host of social violations to occur because people with a disability are not a unique and distinct minority group. People with a disability are losers. Worse yet, if people with a disability really tried hard enough, think Christopher Reeve, they would spend their time overcoming their disability. This thought crossed my mind when I was reading about Marshal Sahlins, an eminent anthropologist, who resigned from the National Academy of Science in protest over the NAS election of Napoleon Chagnon. This has generated a heated debate within anthropology. I reread an interview with Sahlins in Dissent and was struck by the following quote:
The premise of American overseas aggression, according to Donald Rumsfeld and others, is something like the line in the movie Full Metal Jacket: “inside every gook there is an American trying to get out.” All we have to do to liberate this innately freedom-loving, self-interested, democracy-needing, capitalist-in-waiting is to rid him of the oppressive, evil-minded regime holding him down—by force if necessary. That is, Chagnon’s view of self-aggrandizing human nature is the sociobiological equivalent of the neocon premise of the virtues of American imperialism: making the world safe for self-interest. It is the same native Western ideology of the innate character of mankind. A huge ethnocentric and egocentric philosophy of human nature underlies the double imperialism of our sociobiological science and our global militarism.
It does not require a stretch of the imagination to replace "inside every gook" with "inside every disabled person" there is an able bodied American trying to get out. I would argue we need to ask an entirely different set of questions. This is something Jackie Leech Scully has proposed in her book Disability Bioethics. Deaf for almost thirty years, Scully wrote that no person had ever asked her "what is it like to hear as you do"" Instead, people have asked me "How much can you hear"? Similarly, people have asked me "How long have you been paralyzed"? instead of "What does it feel like to be paralyzed"? These questions are profoundly different. One is asking about the experience of deafness or paralysis the other sets one up to fail; the standard or norm is created by the questioner and assumes a terrible flaw exists. The impairment is the start and end of the narrative. The disability is firmly tied to an individual. In pushing people to ask a totally different set of questions it is my hope people will come to a fundamental conclusion--disability is normal, it is an integral part of the life cycle and human history. What was once a singularly uniques story becomes a social problem that deserves careful consideration.
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