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.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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.