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.
Google the words paralyzed and walking. A slew of links will appear that hail recent medical advances implying paralyzed people we be able to walk agin in the very near future. Stem cell therapy and the exoskeleton are the rage these days. Mainstream media outlets breathlessly praises any and all efforts to get the paralyzed upright an walking. This reached a fever pitch last summer at the world cup when a young man in robotic exoskeleton kicked a ball. One and all were enthralled. I just sighed. Yet another story that glorified walking. The message is far from subtle. Walking is good. Wheelchairs are bad. Paralysis is a terrible fate that compromises the life of millions of people. This is grossly misleading. Numerous corporations are experimenting with exoskeletons. They are not conducting such research out the goodness of their heart. There is money to be made selling the idea that all paralyzed people want to walk. People who have no conception of paralysis suck up this idea like nectar of the Gods. When I read stories expounding the virtues of the exoskeleton I shake my head in wonder. Are bipedal people really that ignorant? Sadly yes they are. Your typical bipedal person exposed to a barrage of misleading news stories is led to believe all paralyzed people share one goal in life--walking. Please cue the soaring inspirational music accompanied by the brave and noble young man or woman struggling to walk surrounded by health care professionals, computer scientists, and engineers who share the same ritualized ideal.
The irony of the exoskeleton is that one group of people have no interest in this supposedly ground breaking technology. Come on think. Remember I am the bad cripple. Stretch your mind. Did the veritable light bulb go off yet? Yes, you guessed it. In my opinion the vast majority of paralyzed people have no interest in the exoskeleton. Gasp! Walking has as much relevance to my life as a desire to walk on Mars. There is even a website aptly named Walking is Over Rated. Link: http://www.walkingisoverrated.org
The exoskeleton is not nor has it ever been about walking. The exoskeleton is about selling an idea, walking, and making money. Corporations exist to make money and are the very core of capitalism. Red Nichols has humorously noted that "my wheelchair is a very capable tool and to be honest, the last thing I want is to be strapped to a District 9-esque robot and become a puppet in some corporation's half-baked execution of an obsession with walking." Link: http://attitudelive.com/blog/red-nicholson/opinion-why-obsession-walking
Obsession. People in capitalist society are obsessed. Lenny Davis has argued that we Americans admire obsession in others. We revere musicians who obsess over their ability. We admire professional athletes who excel at sports even if their body and brain are severely damaged when they retire. We admire the paralyzed who are obsessed with walking. Think Christopher Reeve who was beloved post paralysis with his single minded goal of a cure for spinal cord injury. In recent months I have noted multiple stories about paralyzed brides and paralyzed pregnant women. The headlines are always the same and supposedly inspirational. Delete inspirational and think obsessed. Think of the spectacle and symbolism involved. Bride using wheelchair going down the aisle is not a good visual. Bride going down the aisle with flowing wedding dress and walking is a tear jerking event. The latest paralyzed bride portrayed in the media is Tami Martin. She was paralyzed in a car accident and is a very low level paraplegic. In the last week dozens of stories have appeared in mainstream news outlets. The headlines are exactly what one would expect: "Paralyzed Bride Walks Down Aisle", "Dream Come True: Paralyzed Bride Defies Doctors." All these stories fit squarely in the inspirational category that glorifies walking as the one and only ideal. The more obsessed you are with walking the better. Add in the visuals associated with weddings and the obsessed bride who wants to walk down the aisle is revered--a real life American hero.
The flip side of the obsession with walking is not discussed. No one wants to talk about the gritty reality people who cannot walk are forced to navigate. No one wants to think about the barriers to health care and appropriate adaptive technology. Paralyzed people who want to be ordinary are a problem. They are stigmatized for their failure to follow the societal script. Worse, they force others to obey the law, the ADA in particular, that prohibits discrimination against people with a disability. Like typical others we people with a disability want to be able to work, own a home, and have unfettered access to mass transportation. For this to happen disability must be placed in the larger societal, historical, political, and medical context. It requires a completely new way of looking at disability. It requires people to think. It cannot be reduced to a sound bite on CNN. The general public wants to be sold a bill of goods that borders on fantasy. The video below of Olympian Amy Van Dyken-Rouen is typical of the reality that does not exist for 99% of people with a disability.
I love to cook. I am a foodie. I do not have nor have I ever met another person with a disability that could even dream of affording this kitchen. I am thrilled the technology exists. I am equally thrilled top notch adaptive sports gear exists for paralyzed people. I know fantastic light weight wheelchairs exist as well. The same can be said for power wheelchairs. Adaptive gear that empowers people with a disability exists. Yet I know no one that can afford the sports gear or wheelchair they know could enhance their life. We are forced to settle for what is covered by health insurance and affordable. This is never discussed. Instead we try to force millions of people with a disability to adapt to the physical and cultural environment hostile to our presence. In fact the only way to fit in and be accepted is to obsess over walking. I refuse to play this game. I resist and always will. I am quite happy with my body. I do not care one iota that I will never walk again. My wheelchair, though dated, is a wonderful piece of technology that has served me well. Come on bipeds, get over yourself. Think and imagine what life can be. Stop obsessing over walking and use your creative mind.
I find the notion that one has the right to die impossible to disentangle. Death is not a right it is a biological inevitability. All humans that are born will die. Death is inevitable. The so called right to die is incorrectly framed. People want to control how their life will end. Superficially, this makes sense but typically people die in a hospital or nursing home after a long physical decline. According to various sources, only 25% of Americans die at home. What the right to die really involves is a primal desire for control. In my opinion the belief a person can control one's death is narcissistic in the extreme. As I have noted many times, we do not live or die in a social vacuum. Our death has meaning that extends well beyond the person that has died or is dying. Our lives are not equally valued, a fact those that advocate for assisted suicide legislation refuse to acknowledge. Bias exists in many forms. For me, the bias I deal with on a daily basis is called ableism. I rarely hear this term. In fact the only place I hear this term is on university campuses. Fred Pelka, in the ABC-Clio Companion to the Disability Rights Movement, defined ableism as follows: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society".
Ableism is deeply ingrained into the fabric of American society. Ableism is everywhere. It is in our language and use of metaphors. It is in the built environment. Ableism surrounds us and is impossible to avoid. I come across the worst sort of ableism and I do not even need set foot outside my door. I continue to research and write about the death of Tim Bowers, a man that experienced a severe spinal cord injury and died within 24 hours. I was looking for follow up stories in small town Indiana newspapers where Bowers lived and died. I discovered a dreadful article about life as a quadriplegic in the Indy Star. Here I refer to Marisa Kwiatkowski entitled "He Had the Right to Die. But Could He?" Link: http://www.indystar.com/story/news/2014/12/20/right-die/20696633/ This article can only be characterized as ablesim run amuck. The article is about Arun Goel and his family. In 2001, Goel broke his neck and as a result is a quadriplegic. Goel had recently retired from a practice in cardiology and his wife, Sarla was a pediatrician. The main reason the article was published was because Goel's daughter, Malini, recently made a short documentary about her father, "Should Tomorrow Be", that won best shorts competition at the Mallorca International Film festival. I have not seen the documentary which is apparently based on films taken at the point of injury and recovered many years later.
I have no idea what sort of life Goel lived before or since his injury. All I know is he has an upper level injury and experiences the typical complications. I have no issues with the family. I do have serious issues with Kwiatkowski. The language used in her poorly written article is deeply objectionable. The emotional rhetoric is over the top.
I quote:
"Tears leaked from the corners of Dr. Arun Goel's eyes, pooling on the pillow under his head. He couldn't brush them away. His daughter, Malini, wiped his cheeks for him. She caressed his forehead. That gentle stroke of her fingers was more than just a tender gesture between father and daughter. It might be the last moments they spent together".
Stunning words even for a small town newspaper. What this conveys and is designed to prompt is quite obvious; in a word pity. Goel's injury "left his mind intact" and required "life sustaining treatment". Equally obvious leap in logic--his injury is a nightmare of the worst sort, a mind intact in a body that can do nothing. Oh the horror. But wait it gets worse. Goel's injury gave him "the legal right to decide whether to continue receiving that treatment. More painfully blunt, Arun had a choice: life or die". Oh please. Every person has the right to receive or refuse treatment. If a typical person had an infection they could refuse to take an anti biotic and untreated would become a life threatening condition. The only difference between Goel and a typical person is that his life as a quadriplegic is inherently different. Different here means less valuable as in his life does not have the same value as a person that is bipedal. I know this because Kwiatkowski thinks Goel's life is "a story of love, of family, and maybe, of incredible will power." This is ableism in its purely emotional form. Goel is a tragic figure of epic proportions. Nothing could be worse than a spinal cord injury. Kwiatkowski breathlessly noted: "Arun, who had walked four miles on the treadmill the day of his accident was a quadriplegic. He would never walk again. The 62 year old couldn't scratch his nose, hug his family, or wipe aways his own tears". I cringed inwardly when I read those words. How misleading. A second reference to Goel crying and tears. And no hugs? I am sure his family hugged him many times. Why people even hug me. Amazing? I think not.
The article blithely moves on to 2006 when Goel decided to die. People flew in from all over the world to say good bye. His family pleaded with him not to die. Goel did not want to be a burden. He feared living in a nursing home. His family tried to bribe him to live with offers of getting him a puppy or taking a trip to France. Goel supposedly told his family dependency was a disease. The family had signed living will stipulating that neither spouse would receive more than three months life sustaining treatment. According to Kwiatkowski, "he decided to exercise his legal right. He decided to die". This is grossly misleading. This too is ableism. It is simply assumed life as a quadriplegic is a fate worse than death. Goel had suffered enough. But wait there is more! I sound like a carnival barker. Goel decided to live and in 2007 he received a diaphragmatic pacemaker that enabled him to breath on his own. This is life changing for a quadriplegic. Not for Goel though--doctors told him his life expectancy was six months to a year. This estimate was made nine years ago and places Goel firmly in the miracle category. His disability and life are individualized. No one wondered about the life changing ability to breath off a ventilator. No one asked why would he require nursing home care. Why did no one deem Goel depressed and in need of psychiatric care and perhaps medication? All that people saw was what he could not do. Apparently Goel's "diagnosis" prevents him from venturing far from home. His wife, Sarla, is apparently his primary care giver and according to Kwiatkowski "takes him to restaurants, concerts, or galas 10 to 12 times a year". The phrase here dehumanizing and infantilizes Goel.
At age 70 Goel apparently has mixed feelings about life. Unlike others his misgivings are about the choice to live or die post spinal cord injury. Again, this is ableism. When I think about my life I never frame it as pre and post paralysis. In fact no one I know does this. Life is what you make it. All people have strengths and weaknesses. My disability, like all others with a disability, is about much more than what my body cannot do. Walking is not relevant in assessing the contributions I have made. Is my disability a variable? Of course as is Goel's but it is not how I frame my existence. Disability is a part of my identity--note the word part. What bothers me is not the physical deficits I adapted to long ago but the social consequences of disability. I decry the fact a wheelchair often acts as a portable social isolation unit. I abhor the fact many lives have been lost and no one seems to care about this outside of the disability rights community. Articles such as the one I have deconstructed are counter productive and represent a real missed opportunity. Like I said ableism run amuck.
I traveled a lot during the 2013/2014 academic year. I was on the West Coast not once but twice. I was in Boston, New York, City, Baltimore, Washington DC, Atlanta, Hartford, New Haven, and other cities. Travel for a a paralyzed man is never easy. Airline personnel are typically hostile to my presence. Problems abound each and virtually every time I fly. Hotel staff often appeared shocked a middle aged paralyzed man can travel alone and expect an accessible room to be ready upon arrival. Cabbies nationwide are nasty and more than once a cabbie sped by or wanted money to put my wheelchair in the trunk. Bus drivers as a group are better but lifts are supposedly broken or the driver has no idea how to tie down my wheelchair. In short problems abound when I hit the road. I thought about this last night. My left hip woke me at 4:30AM. It feels like hot poker has been placed on my hip. A pronounced pain is present. Not much can be done about my pain. Actually there is nothing I can do. The only mediations that work dull my mind and put me in a stupor. I prefer the pain to a dulled mind. To pass time and wait for the sunrise I thought about the worst access problem I encountered. There was a high end hotel in Boston I stayed at. The bed in the accessible room was so high I could not make the transfer from my wheelchair onto the bed. The box spring was removed and I learned how important a box spring is that night. I did not sleep at all and as a result performed poorly at a public meeting. There was another hotel that accessible entrance was through the luggage room. Each and every time I went in or out about 50 bags had to be moved. There was a aisle chair to get on a plane that was so old and worn out that I had a person sit on it as I was concerned it could not hold my weight. There was a rent-a-car with hand controls that was lost and took two hours to find (it took longer to find the car than it took to fly from New York to Detroit). I checked into an accessible hotel room in San Diego that had so much furniture in it I could not get to the bed. I realized the hotel had used the room to store furniture. Ah, to be such a valued customer. To be fair I had a select number of good experiences. Select as in very few. The gold star for meeting and exceeding my expectations was the Red Roof Inn in Syracuse.
None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter. Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate. Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering. I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.
I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:
I ask a hotel employee. I ask another conference goer. I find a conference organizer. The hotel people go and find other hotel people. There is a hubbub. Facilities people with walkie-talkies show up. I am polite and not angry, over and over. Everyone stands around wondering what to do. There is a freight elevator that is locked that you can only get to from the back alley around an enormous city block. I end up in the basement. There is a tiny airlock-style lift but it’s locked and no one is sure who has the key. I demand the key. Consternation. No one has ever thought about this, ever, in the history of the known universe!
I often INVITE able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.
I had to laugh when I read Henry. I get a perverse sort of pleasure when typical bipedal friends get an inkling to what my life is like. I often joke, welcome to the land of disability. Locked elevators and bathrooms abound. Elevators filled with trash and cleaning products are common, obscure entrances to buildings and other access adventure exist; for example lots of trips through tunnels when navigating universities and huge conference centers. I regularly see the worst parts of some of the best buildings. In a way it is interesting but there is no question the lack of access is a slap in the face. This metaphoric slap is fueled by ignorance and a lack of information. Most venues I visit all state they are accessible. To a degree this is correct. Theoretically one can navigate freely but no one know how to get from the lobby area to the bar, pool, health club or restaurant. No one knows if there is an accessible podium where I will be speaking. No one knows the nearest bathroom to the room I will be speaking in is on a different floor and requires the use of an elevator. No one knows if the nearest subway or bus stop is accessible. No one knows if the airport shuttle bus is accessible. No one knows if the pool has a lift. No one knows where the elevator is when I encounter a sign that points down to an impressive stairway to where I want to go. Sure you can get in--sort of. Like Henry, what I have learned if there is an information black out "that tells me right away I'm heading for a world of alienation, in a place where no one has put thought into accessibility".
What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes. Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.
Brittany Maynard has quietly slipped away from the media's attention. For me and many others opposed to assisted suicide this is a great relief. I spent far too much time talking, thinking and writing about Maynard and the slick ad campaign waged by Compassion and Choices. I wish her family well as they endure the grieving process. I know all too well grieving the death of someone you loved is a never ending source of sorrow. I have been pondering end of life issues the last few weeks. Winter is settling in where I live. The days are short and the nights are long. It is cold and crisp. The end of the year is near and this always makes me retrospective. I miss my son who lives in Seattle and he will be celebrating his first adult Christmas away from home. I have been looking at many cherished photos of him when he was a little boy. He was a cute kid but a royal pain in the ass for his secondary school teachers to handle. Think smart and subversive and that is my son. The apple does not fall far from the tree. I am happy to take my share of the blame or credit and this has me thinking. What sort of job did I do as a father? What will he remember? Will he remember how I lived or died?
Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:
In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen.
Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive: http://myhusbandstumor.com/archive Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:
Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.
When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:
It’s over.
It wasn’t a war or a fight. Those things have rules. This was more like Aaron getting in the ring with the Mohammed Ali of cancers, and smiling for round after round after he got his teeth knocked out and his face rearranged.
Ding.
It ended today at 2:43pm, in the middle of a run-on sentence, my head on his heart and my arms around him in a hospital bed built for one, but perfect for the two of us. We’ve spent the last three years in a variety of hospital beds. We were engaged in the light of a heart rate monitor, snuggled together just feet from his mother on the night of his first seizure. He let me sleep next to him before brain surgeries, even when I was 8 months pregnant and my belly pushed on his IV cords. Our Ralph crawled for the first time in a bed on the oncology floor, desperate to get to the laptop where we were watching The Sopranos after Aaron’s infusion. We snoozed and watched countless movies and TV shows in those little beds, which somehow never felt too small for our tall bodies. Yesterday I spent hours in bed with him, playing songs we loved and remembering stories from our relationship, thanking him for everything he brought to my life and letting him know it was okay to go and chill in the other world with our baby and my father.Today we took our last nap in our last hospital bed, in our home, under a blanket that Megan sewed for our wedding.
It’s okay. It’s okay. Thank you. We had so many good years. Not enough, but really good years. You were so good. You were so good to me. I love you. I’ll keep you in my heart, forever. It’s okay. He breathed out, and I readied for the sharp inhale that would follow 8-10 seconds later, rattling through his body. It never came. That’s how it ends. One quiet second.He was here, and then he was gone. It was tangible, this sudden hole that appeared in the center of the universe when he left his body to become everything all around me, just as he promised to do.But we are stardust, and our bodies are just vessels to help us navigate this earth and to eat Taco Bell. I laid with his body and soaked in his warmth. We dressed him in head to toe J.Crew and his best Nike Dunks. I didn’t even know they cremated you with your clothes, but he’ll be all mixed together with some of his favorite things and the finer things were very important to this man.
Before his first surgery, I stole a marking pen from the surgeon and drew a small heart on his hand. Not so much to reassure him, but to reassure myself. Tonight, I found the same one deep in an old make up and at the urging of his mother, left the same small heart for him with the same stolen marker. I know what Aaron always knew: it might not be true right this second, but it’s going to be okay.
I admire this man. He did not turn his end of life into a made for media event. He and his wife celebrated his life. They had fun writing an obituary. Really, who does this? Few have this sort of wild creativity. What struck me the most though, was that Purmort's son will be able to go back and read about how his parents met, what music he liked, his work life, and how how he died. His death that was not funeral dirge but celebration. Purmort was the antithesis of Maynard. While his end of life experience got some media attention it was dwarfed by Maynard. Everyone had an opinion about Maynard--positive and negative. Purmort made people laugh and think. He enjoyed life to the fullest and died in the arms of his wife. He led a life worth living. A life worth living. That is what people should be remembered for.
As I write these words snow is falling heavily outside my window. Think winter wonderland gorgeous in every way possible. Silence reigns. The animals are hunkered down for the time being and it is silent outside. Rather than enjoy the beauty of the winter landscape I love so much I am agitated--highly agitated. A few hours ago I read an article by Andrea Louise Campbell, a professor of political science at MIT, entitled "How Medicaid Forces Families Like Mine to Stay Poor". Link: http://www.vox.com/2014/12/9/7319477/medicaid-disability Two thoughts have dominated my mind:
1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?
2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?
In the article by Campbell, based on her book Trapped in America's Safety Net she details what took place to her sister-in-law after she had a car accident. At the time her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably the baby survived the accident as did Wagner. However Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was after all a professor at MIT and had taught social policy for many years. What she discovered though was quite different. She could provide little help.
Adapting to a spinal cord injury is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a SCI extends well beyond the body. Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time the vast majority of people who have a SCI eventually adapt. Today however newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:
The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor... The programs Marcella now needs as a quadriplegic have helped her in many ways, but have also thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.
Ah, welcome to the land of disability. Our current means tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following her injury it was clear to Campbell that her sister-in-law's career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:
In order to get poor people's health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it--they have to meet the programs income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit.
Again, welcome to the land of disability. The poor are not to be trusted. Those with a disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damn well better hold onto the receipts and be able to demonstrate you have used up the allotted amount. If you need more be prepared for a mountain of pile work and documentation.
The system is punitive in a myriad of ways and while it helps it hurts and grinds people down.
Assets cannot exceed $3,150.
Money cannot be used to pay student loans or household bills.
One cannot save for retirement.
An emergency fund cannot be created in the event they have a household or personal emergency.
One cannot save for a child's education.
A family member cannot pay for their niece or nephew education. That would be considered income.
Any inheritance for their son would go to Medi-Cal.
In short, Campbell's sister-in-law and brother are barred from doing what everyone else in America tries to do--save for retirement, pay for their child's education, and earn as much money as possible or desired.
Campbell gets to the bottom line, a twisted bottom line at that.
America's social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well.
Campbell put the perfect face on why so many paralyzed people are forced to live in poverty. That is live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse, is the cost of empowering technology in the form of a wheelchair. Sure it is covered but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fund raiser because those funds are not going to appear.
Campbell and others come to a basic conclusion: American social policy is rotten to the core. So on this lovely day as I look out at a thick blanket of snow and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can't be trusted. Our desire to be connected to the community is cut off--go to the nursing nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to "read through the heart breaking stories" and the "many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise". I wonder though, are such stories helpful. Some will dismiss it as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story Campbell's sister-in-law only heightens that fear. If people cared, that is if people wanted to have the elderly, poor and disabled as vibrant members of society, we would not have accepted a rotten social support system. Campbell is correct--rotten to the core. Leave it to me to spoil a wonderful day.
Last Friday night I went to a Christmas tree lighting ceremony. It was mercifully short. It was a typical Central New York small town affair. There were gaggles of teenagers running around. The small crowd was dominated by mothers and fathers with little children, many being carried or in strollers. Everyone was congregated in one area. All the town shops were open. High school and middle school kids were selling a wide array of over priced goods. This is not a critique: as a parent I helped my son sell plenty of popcorn, Christmas wreaths, manure, and wrapping paper in support of his school or Boy Scout and Cub Scout activities. I kept my wallet firmly in my pocket, head down and Kate close by my side. One and all appeared to be having a good time. I was miserable. Really truly unhappy. I was not miserable at the time. Sure I was a little cold and wet but was happy to see two close friends. We watched the tree lit up from afar. We chatted and slogged through a crowd to get to my car. All in all a pleasant evening.
Like many, I struggle during the holiday season with depression. For weeks I have been quietly unhappy. I have no reason to be unhappy. I have a lovely little place to live. My neighbors are friendly and kind. I know most of the neighborhood dogs. There is a chocolate lab named Laker that reminds me of my old yellow lab Burt. Laker is dumb as a post just like Burt. Laker is also loyal in the extreme. I love my job. I have outstanding under graduate students and fascinating graduate students. I have the support of my peers at work. The university where I work is an outstanding university. I have a small but tight knit number of friends who live nearby. I go out on a regular basis and have shared many fine meals with friends. I have thought provoking discussions with my colleagues and students. And yet I am miserable. I chalk this up to the season of cheer. I work hard at convincing myself I should be cheery. This effort rarely works. I bury myself in work and books and ethical conundrums with no solutions. I have cleaned my house today to a high shine. I vacuum daily and polished my kitchen floor before sunrise. All this provides relief but not a cure to the misery in my soul.
I was awake most of the night lost in thought. My brain would not turn off. What is wrong with me? Why can't I be happy like everyone else? Why can't I be content? I gave up the pretense of sleep at 4AM. A gorgeous sunrise lifted my spirits a little.
Along with this lift in mood I made connection via a book I recently read, two short essays, and of all places a long thread on Facebook. Essentially the proverbial light bulb went off in my mind. I realized I have no home. I had a loving home as a child. I was blessed with ideal parents. The home I grew up in felt real. In fact I still have a deep connection to the house on Rich Bell Close. Yet the notion of home has slipped away from me as my body became increasingly dysfunctional. Another variable is that I never expected to live an adult life hence I did not think about the concept of home very much. Fast forward a few decades and here I sit a middle aged man and come to the harsh realization I have no place to go that makes me feel good. There is not at this time a physical or social environment that makes me relax and feel at ease. I have no sense of home. I do not care about the house where I raised my son. I do not care about the place I reside. I do not care about Hofstra or Columbia University where I spent my youth and early adult life. Worse, I have almost no connection with others. By connection I mean a deep bond that defies logic and enables one to share deep inner thoughts. What is wrong with me? Where have I failed? Why am I alone? Surely the fault lies within me. Maybe not. I made a connection that I think enlightens me and I suspect many others with an atypical body.
The connections I have made are as follows:
First I read Lenny Davis book The End of Normal in which he discusses biopolitics or biocultures defined as "the study of the scientificized and medicalized body in history, culture and politics". This resonated with me in that it sought to undermine something I know all too well--disability is socially constructed and as Robert Murphy liked to joke disability is a social disease. Second, I read a post at Musings of An Angry Womyn entitled "I have No Refuge". Link: http://www.angryblackwomyn.com/blog/i-have-no-refuge This short essay really struck a cord with me. Third, I read a post by Stephen Kuusisto at his consistently thought provoking blog Planet of the Blind entitled "Normal". Kuusisto referenced Davis book and railed against "the tyranny of industrial normal" and speculated we must insist on ending this pejorative construction. Link: http://www.stephenkuusisto.com/disability-news/normal-2 Fourth, my experience at the Christmas tree light ceremony in my small town in Central New York.
In reaction to Davis' book Kuusisto wrote: I’ve been trying unsuccessfully for years to imagine the kind of society that cultural theorist Lennard J. Davis envisions in his book The End of Normal. Briefly: we know race, gender, and disability are social constructions—which means in the widest sense “normality” might be, conceivably, on the ropes. A boxing analogy is appropriate. We’ve been punching Old Normal for a long time. The maddening thing is how “Normal” keeps smiling, taunting us, snarling through his tombstone perfect American teeth. And if you think his teeth are infuriating, well, his odor is worse. He smells like “Brut” and bacon.
Taunts. Oh how I know all about taunts. I know about social injustice. I know all about stigma, fear and alienation. I have been refused service in restaurants. I am often segregated or directed to special services--special being a code word for inferior, not worthy of real inclusion. The short bus or para transit for you! Social injustice is a daily part of my life and others with typical bodies. I cannot nor will I ever live in a utopia where disability based bias does not exist. In "I have No Refuge" I was struck to read:
There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in time of disaster. I have no refuge from fear, exclusion, discrimination, bothering. I cannot shut down. I cannot get away. I'm forever open to it.
Forever. Think about that word. I often think about forever. Nothing is forever--a very old and trite line. Well for me social injustice is worse not better. Social injustice might not last an eternity, forever, but ableism will not be eradicated in my lifetime. This is where I depart from Davis. He is a first rate theoretician and The End of Normal resonated in my mind. Great book but so what. It did not help me one iota. What is the good of theory if a norm free society does not exist. Reading Davis I was reminded of Thorsten Veblen, an economist by trade and sociologist at heart. I read his 1899 text Theory of the Leisure Class. Veblen was a harsh and humorous critic of capitalism yet never was active in labor politics or social movements. Veblen thought he was merely an observer above the fray. Disability studies scholars such as Davis and other key figures in the field also work as observers above the fray. This is not a critique. We need theory. We need disability studies to be a vigorous field of academic inquiry. We need Davis and other theoreticians. I would suggest we need a lot more than theory. We need to be engaged. We people who work in what is called disability studies need to be socially and personally invested in creating social change. We in short should be leaders of a social and economic revolution. Lives are stake. If we do not become far more active in a boots on the ground style I fear we will all end up like Veblen. He died alone and impoverished in California. No human life should end that way.
I have no idea how to jump start a revolution. Disability is perpetually thought of as a medical problem. The social model of disability is virtually unknown in popular culture. Disability is rarely if ever framed as a civil rights issue. When I try to explain this to others they often reject it out right. Some even laugh at me. The ADA is an unfunded mandate. Disability rights is political correctness run amuck! No one burned a cross on your lawn! No disabled people have been lynched! This is correct. Instead we place people with a disability in institutions and their existence is quickly forgotten. Supposed kindness and care are killers. We continue to design buildings that are grossly inaccessible. Physicians refuse to treat people with a disability. People with a disability often die of physical and social neglect. Schools rely on resource rooms and segregated short buses. Airlines routinely discriminate against passengers with a disability. Wheelchairs are often broken by airlines and disrupt lives for months. Mass transportation remains a challenge to access.
People tell me I am too serious. I need to lighten up and get away and relax. Do something fun I am told. This is sound advice I have heard often. It is not easy to put into action and highlights the cultural divide between those with and those without a disability. When one has a disability throw normal out the window. Want to go out to dinner? Forget Friday and Saturday nights. Good luck dealing with other dinners, narrow aisles that cannot be navigated, and obviously annoyed staff who think you are taking up too much space. Need a bathroom? Dream on. What about going to a concert or sporting event? You must buy tickets through the box office. You leave messages and no one returns your call. At the Christmas tree lighting ceremony all the bipedal people that surrounded me appeared full of good cheer. I was across the street with my friends. I had no desire to be run into or have my view reduced to the backs of people. I also had no desire to be bumped, prodded, blessed or cursed by heavy duty Christians that abounded. Trying to depart was far from easy. People are in their own social vacuum and appear to think it is my job to laterally move around them. Wheelchairs do not move laterally. I get to the curb cut and no one moves. I am not invisible. How I wonder do people think I am going to get by. Excuse me rarely works. People are stunned I can speak. Most ignore my existence.
Go have fun. Sure, have fun in world not designed to be inclusive. Yes, lets try to eradicate the idea of normal. Good luck with that. Normal as Kuusisto noted is taunting us. I am well aware my existence is not valued. This message is far from subtle. On Facebook I described the Christmas tree ceremony and a fellow cripple who I respect suggested I should "be the change you want to see this world" and that I should "honor yourself" and to "be worthy of appreciation from others". These are nice sentiments devoid of reality. I value my existence. I like my body. I assert my civil rights. I teach. Since the day I was paralyzed I have tried to educate others. I advocate for myself and all those disenfranchised. Like other people with a disability I am the real and symbolic form of resistance. I am the blue wheelchair logo sign. But those blue logos lead to nowhere-- an observation my son made many times as a child. People do not want to know about injustice. People do not want to think about inconvenient truths that cloud American myths we hold near and dear. Being depressed seems like a logical response to a world that is hostile to the presence of the atypical body. It is not just me. Try being black. Try being an obese person. Try being deaf. Try being blind. Try being paralyzed. Try being a conjoined twin. Try being gay, transgender, lesbian or bi. Try being different from the norm. Try this and you will realize the end of normal is a pipe dream.
I love hockey. I am an avid fan of the game. I go to a few games a year. I enjoy watching players develop in the OHL and the AHL. I find it fascinating how players fix "flaws" in their game and develop into NHL players. To make the NHL is a hard road. Players, teenage boys, leave their homes at an early age and precious few become NHL regulars. Hockey players are tough in the extreme. Injuries are common and can be devastating. Concussions happen with alarming frequency. Broken bones, torn tendons and severe lacerations are routine. Career ending injuries could happen on any given shift. Frankly it is amazing no professional players have been killed. What is relatively uncommon in hockey are spinal cord injuries. They happen for sure but spinal cord injuries is not what leaps to mind when you read about injured hockey players. Based on various Canadian spinal cord injury websites it is estimated 17 players above the age of 9 will experience a spinal cord injury in a given year. Given the popularity of the sport, that number is quite low. Younger players, teenagers, are most likely to experience a spinal cord injury. Most spinal cord injuries are a result of sliding into the boards head first at full speed. Thus cervical injuries abound.
The paralyzed hockey players I have read about are typically high school or college students. The most well known person I can think of is Travis Roy who was paralyzed during his freshman year at Boston University in 1995. Post injury, he has become a motivational speaker whose sole interest is a cure for SCI. With help from wealthy donors he founded the Travis Roy foundation. Another young man, Jack Jablonski, an American high school student experienced a cervical SCI in 2012. Like Roy, Jablonski created a foundation specifically designed for finding a cure to spinal cord injury. A cure for spinal cord injury is a laudable goal. I totally support this effort. As I often jokingly note, I do not recommend the paralysis. Here is where I depart from Roy and Jablonski. I take issue with the social ploys used to raise money for a cure to SCI. Simply put, pity sells. A charity model of disability creates revenue streams that empower people like Roy and Jablonski. They can make a career out of their injury and desire to skate again. I get why the charity model is embraced. It is highly effective. Christopher Reeve perfected this model. The charity model of disability, in this case SCI, is an unquestioned financial success. The general public sucks it up like nectar of the gods. Pity sells newspapers, magazines, creates high television ratings, inspires people to donate and hold fund raisers, and provides great visuals. Cue the dramatic images: tall young man standing or skating juxtaposed to the same person in a large power wheelchair post cervical SCI. This results in tear jerking emotional videos of Jack Jablonski Be13eve in Miracles and the tag line "stick tap to hope". Sorry but this video is so over the top I cannot even provide a link.
Here is what is lost in the tears, pity, out pouring of support, and invitation to drop ceremonial pucks: the greatest obstacles people with paralysis encounter is social exclusion and stigma. The statistics associated with disability are grim. The vast majority of people with a spinal cord injury are unemployed, poorly educated, and typically live on the razor edge of financial oblivion. Accessing mass transportation and affordable housing remains exceedingly difficult. The last 40 years of progressive legislation designed to empower people with a disability that reached its zenith 24 years ago with the passage of the ADA has put the law on the side of supporting the civil rights of people with a disability but has utterly failed to resonate culturally. Again, cue up the charity model of disability. The more emotional the manipulation the better the yield--that is an adequate revenue stream for various charitable foundations whose sole or primary goal is a cure for spinal cord injury. This is wonderful for young men who become the public face of a foundation. If the Canadian statistics mentioned above about the prevalence of SCI are reasonably accurate I wonder what happened to the 16 other young men who experienced a comparable injury. Where are these young men? Are they employed? Are they in college? Are they living in a nursing home? Who is providing their basic care? These people are the dark underbelly of the cure industry. These are the people we do not want to think about.
Surely I exaggerate. Sorry but no. I must be bitter! Sorry but no. I am an angry narcissist! Sorry but no. I am angry but my anger is not about my paralysis; I made peace with that a very long time ago. I am angry because people are being duped and mislead. Worse, lives are being destroyed in part because it is all too easy to individualize disability. Writing a check, shedding a few tears after watching a video about a young man who is paralyzed in a hockey game empowers people to assume they did their bit to help the less fortunate (think the ASL Ice Bucket challenge). This may make people feel better but it does nothing for the vast majority of people who are paralyzed. I am advocating for myself but my main concern is never me but rather the next person who is paralyzed. I am happy to take the lead and social abuse that comes with advocating for disability rights. In terms of people with a disability I am privileged. I have a first rate education replete with a PhD from Columbia University. I have a son who I love very much. I work at Syracuse University, an institution with a long and distinguished history in support of disability rights. I have formed a family of friends in Central New York where I live. All these ordinary and wonderful aspects of life make me an exception. In terms life with a disability I am a rarity. And this is what we should be focused on-the lives of paralyzed people. Thus I wonder why has the unemployment rate for people with a disability not changed in 25 years? Why are most people with a disability living on the edge of poverty? Why is accessible housing and mass transportation grossly inadequate? Why are these issues not front and center when discussing disability?
The answer to the questions above are deeply rooted. Culturally we individualizes disability. Disability is not about an oppressed minority group. Disability is not about empowering people via education and employment. Disability is a problem. An individual's problem and bad luck. We will do our best to help the disabled within reason. Reason here is a code word for money. We will do our best provided it does not cause a significant financial burden. Hence the laws that support people with a disability are perceived to be an onerous burden and people often object. The ADA is an unfunded federal mandate critics shrilly proclaim. The fact this is wrong is utterly lost when disability is consistently framed as an individual problem. This gets me back to hockey.
The latest young man led to believe disability is an individual and largely medical problem is Michael Nichols. He experienced a cervical spinal cord injury playing high school hockey in New Jersey earlier this year. I heard him interviewed on the radio and was saddened. I wondered where and when did rehabilitation go wildly wrong. Spinal cord injury is now complicated. Partial injuries are more common thanks to broad based advances in medical care. A protocol exists that limits the damage at the point of injury. This is wonderful as are the many websites that provide detailed information about how to adapt to a SCI. But post injury rehabilitation has embraced the cure industry. Walking as an idea has been embraced. I am aware walking, if a reasonable goal, should be attempted. Post paralysis life is all about maximizing remaining functional movement. If that includes a narrow range of walking, standing or slight movement great. This however is boring stuff. It is not inspirational. No miracles are involved. Rehabilitation and adapting to a SCI involve hard work. The focus on adaptation to SCI does not generate revenue. It does not warm the soul. The ability to assert one's authority and question disability based bias and stigma does not endear one's self to bipedal, typical, others. Just as I was brain washed into embracing a fierce form of autonomous behavior post paralysis circa 1978, newly minted paralyzed people are sold the idea life can be put on hold until a cure exists. Walking as an idea, a glorious ideal, is used to mislead people. Cure is a revenue source--an industry that markets and sells itself via imagery of disability as tragedy. The goal is not to lead a productive life but rather maintain one's body until a cure exits. Thus it is understandable how young men are not taught to be autonomous but rather become professional patients waiting for a miracle. Video such as the hockey themed song abound:
I have followed Nichols, Roy and Jablonski from afar via various media outlets. I shake my head in wonder. To me, they represent a much larger cultural failure. I do not fault them. They are very young men whose life was radically altered in a fraction of a second. They are a product of their time just as I was. My mentors were hard foremost among them was Robert Murphy. Disability is a social disease was a favorite quip Robert Murphy, author of the Body Silent often made. This quip and its larger meaning does not resonate for people recently injured. Instead, I read statements by Nichols and I cringe: "I'll do anything to win. I hate to lose. This injury, I'm not going to lose to this injury." One reporter gushed: He views his recovery like a hockey game that needs his constant effort, shift by shift, day by day.". I admire the spirit but bemoan the focus.Ignored is the very different reality most people post SCI will encounter. Any connection to the larger disability rights movement or disability studies is utterly absent. In place of autonomy far fetched ideals abound. Be a paralympian! Do not let SCI win! Work toward a cure! The result is people leave rehabilitation unprepared for life. Yes, it takes a while for the body to adjust to paralysis but the focus is not placed on the most basic needs. The biological reality of life post injury has not changed. Pressure sores are to be avoided. Urinary issues must be dealt with carefully. For those with a cervical injury, autonomic dysreflexia is a serious and life threatening reality that can in most instances be avoided.
I would suggest we need to radically alter rehabilitation post SCI. Invest in the young men and women with a SCI. Extend rehabilitation from mere weeks to months as a first step to reclaiming autonomy. Focus on immediate needs. Teach people how to manage bowel and bladder care. Provide people with excellent equipment such as wheelchair cushions and power or manual wheelchairs that are appropriate for the level of injury. Educate people about how to care for their body. Teach people how to avoid common secondary complications associated with SCI. Once able to control their body and medically stable move to step two that as of today does not exist. Create, on a state by state basis, cripple universities that operate like a halfway house. Teach people disability history. Detail what what disability rights activists and disability studies scholars have accomplished. Empower people via education. Teach them how to assert their civil rights. Assign them mentors. I am not referring to paralympians but rather ordinary people that are paralyzed and lead a typical life. A fundamental part of all this eduction is employment. Include a human resources department as the final step to the resumption of life. For those without family support or an existing network of friends provide temporary housing and temporary work. Plan and implement activities nationwide. Job fairs, university programs, adaptive sports festivals, equipment expos, and exposure to independent living centers. Expose people to ADAPT, Not Dead Yet and the Disability Education Defense Fund.
All of the above costs money. Millions of dollars would be needed. The savings personally and financially would be astounding. Invest in newly minted cripples! Let's go wild and dream big. Invest heavily at the point of SCI. Provide the best education. Provide the best equipment. Expose people to adaptive sports of all kinds. Create sport and fitness centers. Locate accessible housing and mass transportation. Do not let any person leave cripple university without employment. Do all this and we will have funded a social and technological revolution. To my fellow cripples, I ask for your help and ideas. How do we make this happen? How do we revolutionize lives post SCI? How do we undermine the medical and charity model of disability so that those who know nothing of disability can be empowered to be, gasp, typical and equal.
