Responses to Paralysis

I am an avid New York Ranger fan and closely follow the team and NHL in general. My interest dates back to when I was a little boy and the big bad Boston Bruins broke my heart on a regular basis. I truly love hockey. It is a spectacular mix of athletic skill and violence. Hockey players as a group tend to be very kind people, down to earth and giving. It has always amazed me how few hockey players suffer spinal cord injuries. Of course some players have had such an injury. Most recently I have been reading about Jake Jablonski and Jenna Privette, two young hockey players in Minnesota who suffered a spinal cord injury. As often happens, there is an out pouring of support from the hockey community. Based on newspaper accounts, Jablonski will never walk again. The prognosis for Privette is a bit more optimistic.

I have been thinking a lot about newly paralyzed people in the last month. The death of Christina Symanski deeply troubled me. How I keep thinking could a paralyzed person choose to die? Is paralysis really that bad? For me the answer is an emphatic no. This Friday is also a milestone for me. January 13 will be the 34th year since I last took a step. In a retrospective mood, I have grown to feel increasingly disconnected from newly paralyzed people. My experience was radically different from what people go through today after a paralyzing injury. There were no laws to protect my civil rights 34 years ago. Wheelchair access was perceived to be a choice, charity, and obstacles abounded. I was driven largely by fear. I wanted a normal life. Normal to me meant going to college like any other 18 year old man. I was paralyzed but the most important part of my body, my brain, was working perfectly fine. And I did exactly what I set out to do. I went to college, graduate school, got married, had a child, and much later divorced. All very ordinary experiences.

This is what I have been thinking about: why not be ordinary? Why is the ordinary out of the reach of paralyzed people? Why was I able to move on without missing a beat? Many paralyzed people I know have done the same thing. I know researchers, doctors, academics, business men and women, and lawyers all of whom are ordinary, ordinary paralyzed people. This line of thought was prompted by a story on a local Minnesota NPR radio station. Ali Lozoff wrote "Navigating the Life that Follows a Spinal Cord Injury". It would be easy to critique the article as there is too much about overcoming and inspiration. But the bottom line was her admiration for her Uncle Bill. He was paralyzed as a youth and lived 45 years as a semi independent quadriplegic. What does Lozoff remember? Her Uncle was funny, complicated, determined, talented and happy. She recalled:

"For 30 years he sold pieces at art fairs, in galleries and on street corners; my cousins and I grew up working as his assistants, packaging note cards and making change. We saw the varying degrees of pity, fear and discomfort he encountered in other people every day of his extraordinary life."

Lozoff's Uncle Bill learned to paint just like Symanski. I never met Symanski or Lozoff's Uncle Bill but in a way we are all linked. I did not get this connection until I read the following words by Lozoff: "I've been trying to figure out the best way to carry on the inspiration and example of his life. One way, given the news of these recent sports injuries, is to tell Bill's story to more people. Jack Jablonski's prognosis is the same as Bill's was; his doctors say he will never walk again. Even so, the circumstances are different; the medical advances since Bill's injury are innumerable. But the life-long challenges are similar."

I am willing to ignore the reference to inspiration and have instead latched on to the phrase "the life-long challenges are similar". I would maintain those life-long challenges paralyzed people encounter are social and take many forms. Gross lack of social supports are commonplace. Unemployment is rampant. Access to health care difficult or impossible and too often results in institutionalization. Mass transportation is problematic at best. Housing scarce. These are social problems that preclude an ordinary life. For some, they are beaten down by such barriers. This worries me. In spite of 40 plus years of legislative initiatives designed to empower people with a disability newly paralyzed people are set up to fail. Sure we have laws designed to protect our rights but such laws are meaningless without social support. We as a people, American people, do not value laws of inclusion. The presence of a person with a disability still causes a social disruption--it upsets the "primal scene of sociology" as utilized by Erving Goffman. Part of me values my existence as an outsider. I know the norm will always escape me and that I have a "spoiled identity". This has not changed nor will it. Such a position is great for viewing and analyzing much social interaction. But a life spent as an outsider is not what many want--and here is where I understand others who struggle with paralysis and its social consequences. As Kermit the Frog said "its not easy being green". To this classic line I would modify to it may not be easy but it sure as hell is interesting.

Santorum Victory in Iowa: Shocked, Just shocked

In November I took apart a Santorum political commercial. At the time, I did not consider him to be a viable candidate. I thought he had no chance to win the nomination. Wow, was I wrong. Santorum virtually tied the Republican caucus in Iowa last night. I could not believe it. I lay in bed this frigid morning stunned. I tried to comfort myself with the the thought he lost by a narrow margin--as in eight votes. This did not help. But my thoughts were not tied to his victory but rather a video I saw of Santorum speak about the birth of his daughter. Since he was a fringe candidate I did not want to take the time and felt he was not worth picking on. This all changed last night. Santorum's daughter was born with Trisomy 18, a condition he describes as worse than Down Syndrome, a characterzation I will not comment on. Santorum correctly notes Trisomy 18 is usually a fatal condition. Again, I will not comment on why Trisomy 18 is fatal. I will instead urge readers to do their own research and hope they keep in mind an inherent disability bias that exists in our society. So, check out the video below:



I dislike Santorum for a host of reasons. He is staunchly anti gay. His views on abortion are extreme. His fiscal policies punitive. In short, for me he is the personification of all that is wrong with conservatives, the Tea Party, Republicans, and Evangelical politicians. But I failed to realize he has a great act going here. He makes Sarah Palin look like a B level actress. The video is a sure fire tear jerker. How can you not cry and laugh. The man is engaging, he has charisma. A number of articles appeared over the Thanksgiving holiday about Santorum's so called confession. It was startling. He withheld his love from his own child. He did this to protect himself, to be the "rock" for his family. Oh, how manly! And who is to blame? Why doctors of course. They encouraged him to "let go", a nice way of saying his child would be better off dead. Worse yet in Santorum's estimation, imagine if their child had been born in a country with socialized medicine. His daughter would have surely died. And who is the savior, the hero of the story? His wife, the child's mother, who fought for a prescription for oxygen when they took their baby home from the hospital. The heroin of the story, the mother, saves her child time after time. She is the personification of motherhood.

The emotional impact of the video cannot be underestimated. I dismissed it as political theatre and was I ever wrong. This is a classic American fairy tale. It touches a primal core within American cultural beliefs. For a politician this story is a veritable gold mine. Santorum becomes bullet proof. I read a comment Santorum was not happy last night, that he had a "rough night". Why? His daughter was sick. Yes, on the biggest night of his political career he was not celebrating his victory but concerned with his daughters health. Hollywood could not write a better script.

The only problem with the Santorum story is it is patently false. Let me be very clear on this point. I do not doubt Santorum and his wife are loving and dedicated parents. Everything I have read about Santorum indicates he and his wife are wonderful parents who have home schooled their children. I consider the story false because my take on what he and his wife experienced with their daughter is radically different. So, forget the tear jerking emotion and examine what took place. Doctors told parents in the United States to let their child go. They encouraged parents to let their child die. This did not happen in a country with socialized medicine. This happened in America. It happened to powerful parents with I assume excellent health care insurance. This leads me to ask why? Why did doctors encourage parents to let the Santorum's child die? This was an institutional response enacted by highly educated doctors. Again, why? And more to the point what would happen to ordinary parents? Would they have won the fight for oxygen for their child? I doubt it very much. And what about Santorum's social policies? Forget the emotional impact the video makes. Under his budget cuts and opposition to health care reform who will be hurt? Children like his daughter. She would be hurt. People with a disability will be hurt. People with a disability will not get a good education, one they are legally entitled to. Children like his daughter will struggle to access health care. Children like his daughter future is grim. But hey, Santorum got teary eyed. Santorum cares. Santorum is a great father, his wife a heroic mother. He is a rock of stability. My hope is voters can decipher reality from emotion. The reality is grim. The emotion a smoke screen. The man is slick, his message has massive popular appeal. I was grossly wrong before. Santorum is a viable candidate. This thought scares me to death. And no, I do not want to die.

Exoskeleton: A Cranky New Year

Anyone who has glanced at this blog knows I do not like the exoskeleton. About once a month I get an email from exoskeleton fans who characterize me as bitter. I don't get this--I am quite happy rather than bitter. I really like my wheelchair and think I have led and will continue to lead a rich and rewarding life. I see no use for the exoskeleton in my life and likely about 95% of those who are paralyzed. I remain troubled by the huge sums of money spent on the development of the exoskeleton to the detriment of mundane and important technology such as wheelchairs. I have often felt like a lone voice of dissent. It is as though I am the cranky sober guy at a wild party who ruins the fun for everyone else. But I am not alone. I just read a post by Mike Ervin at his blog smartasscripple. Ervin is a very funny columnist and I loved his December 20, 2011 post "Mandatory Exoskeletons".

Ervin wrote:

I�m pretty fucking depressed these days. It seems like my nightmare, dystopian vision of the future for cripples is rapidly becoming reality. And there�s nothing I can do to stop it.

"All over the world, evil, mad scientists are working with feverish, sadistic glee developing robotic exoskeletons. Check it out. Google up some exoskeletons and you�ll see what I mean. A lot of these scientists are pursuing this research in the name of using exoskeletons to enable cripples to move their limbs again. They�re making tremendous progress and it�s pretty damn scary. Because soon those super-charged exoskeletons like the one that guy flies around in in the movie �Iron Man� will be an everyday reality. And as soon as that happens, every cripple will be required by the state to have one.

When you look at it from a cold, bureaucratic bean-counter�s perspective, it makes perfect sense. Why should the public trough pay for cripples to have human assistants accompany them all day and help them do stuff when you can make those same cripples wear exoskeletons and suddenly they can move everything they couldn't move before and do stuff for themselves? The more crippled the person, the more of an exoskeleton they�ll need. Like a single amputee would just get a corresponding bionic arm or leg and they�re off to the races. But someone who�s really really crippled, like me or Christopher Reeve, if we�re supposed to do everything for ourselves we�ll have to be assigned a full-body exoskeleton like the �Iron Man� guy�s."

Acerbic. Ervin has a razor sharp wit and I am glad he too has poked fun and railed against the exoskeleton. What a waste of resources. Any facility or person that purchases a exoskeleton is on my shit list. I simply cannot respect anyone that buys into the hype of such a device. Let the popular press wax poetic about the virtues of the exoskeleton and walking but at least spare paralyzed people from such empty rhetoric. I really have too much to do. My life is too good and I am too happy. My wish for 2012 is simple--I hope the exoskeleton falls victim to the long predicted apocalypse.