Life Support: Not What You Think

Last year I read about Dan Crews. It was a sad story I chose not to write about. Crews experienced a spinal cord injury when he was three years old and is a ventilator dependent quadriplegic. Briefly put, he wanted to die. He wanted someone to turn off his respirator and he went public with this request. The story made the news and I recall not being surprised that many supported his desire to die. Suicidal thoughts for high level quadriplegics shortly after injury are not uncommon. I tend to think it is a sane and rational response to a devastating injury and radically life altering event. However, the vast majority of people with such an injury move on with life. These are people you never read about in newspapers. I thought that Crews wish to end his life was nothing more than a public cry for help. I did not want to step into the fray though I was disappointed by the media coverage. It was maudlin in the extreme. It was also overwhelming supportive. For example, in 2010 the Milwaukee Wisconsin Journal Sentinel noted:

Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.

The message here is not subtle. Kill the poor man already! Slow down. Forget the melodrama and please ask the pertinent question. Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life. Thus the question that should be posed is why is the quality of his life so poor. Why does he have no friends? Why does he live with his mother? Why does he lack an adequate education? Why does he not have a job? Why is his love life lacking? These questions could be used as a spring board to address a multitude of obstacles people like Crews and others with spinal cord injuries routinely encounter. Crews is far from unique--indeed, the only thing that sets him apart from others is his wish to die. He is the exception not the rule to how people cope with spinal cord injury. You will never read about these other people. They do not make good copy. They will not reinforce societal beliefs that a devastating spinal cord injury such as the one Crews experienced is a tragedy. This tragedy precludes the ordinary--a job, family, education, and a girl friend. Again, I ask why. Why does a disability, even a high level spinal cord injury, preclude a rich a full life? The answer is not complex--society does not value or support such lives. The fact is Crews has the same inalienable civil rights as any person that can walk. He has had these rights since the ADA was passed. Just because the law states he has these rights does not mean we as a society support them. I know they do not.

I had not given Crews much thought until this week when his name came up in the news yet again. I had assumed Crews was doing better, that positive change had taken place. The jaundiced part of me thought perhaps publicity is not such a bad thing. I was wrong. Crews is still unhappy and wants to die but for different reasons. The $4.2 million settlement Crews received after he was injured is gone. He is now deeply in debt, likely to lose his home because of his medical bills. Where will Crews end up living? In a nursing home. Life in a nursing home is in the words of Crew "hell on earth". For a young sentient male this is quite true. Crews stated "I thought I wouldn't live to see this. It started to dawn on me last year that money was leaking out like a sieve. I will lose the one thing that makes my life tolerable: my privacy and my family." Going bankrupt to pay medical bills is exceedingly common today. But for those with disabilities the choices after one goes bankrupt are exceedingly limited. There are inherent dangers here. People with a disability know this as does the medical establishment. And like all others humans people in the medical establishment are subject to individual bias. This bias can be deadly for people on the margins like Crews and others like me with a spinal cord injury. Such individuals do not receive equal treatment socially or medically. We are, I am afraid, returning to a harsher time when able bodied people determined when disability is too much to bear. This thinking is so wrong it is staggering to me. The obstacles we people with a disability encounter are largely social. No one wants to engage in a discussion about the reasons why we remain socially isolated, under educated, and unemployed. The only thing keeping Crews in his room are social barriers we as a society are willing to let exist. Crews went to a local college and had dreams of a career--dreams he gave up on because the barriers to going to a school away from home were too overwhelming. This too is not unusual. Indeed, I refer this as academia's dirty little secret. High level quadriplegics are effectively barred from attending college. The social and architectural barriers are too imposing.

How many lives such as Crews will be lost before we choose to change? How many lives have been derailed already? It is so easy to misconstrue the lessons we can learn from Crews hardship. For example, in a story about Crews last year year the UWM Post noted:

"He does not have a career. He does not have a social life. He does not have a love life. He is stuck in a bedroom, day after day after day. He cannot enjoy and appreciate all the little things we, as able-bodied beings, take for granted – for instance, the sun warming our faces and the sand beneath our toes as we walk along Lake Michigan’s beach on a beautiful day. Take a moment to reflect if a life without all the simple pleasures sounds like something you would be content with.
The Journal Sentinel writes, “Yet stories like Crews’ are troubling to disability rights activists. They argue his quality of life doesn’t have to be inherently bad; rather, they say, society doesn’t provide the resources for Crews and others to live a satisfying life.”
My question is: what resource could possibly be provided to someone in Crews’ condition? I have wracked my brain trying to think of something – anything – that could even begin to make a person destined to the confines of their bedroom, due to accident or illness, feel as if they were not missing out on, well, life. I’ve got nothing."

Let me respond to this inane melancholy. I have not felt my toes in 32 years. I have tenuous control over my bladder and bowels. I cannot do many things, ordinary things, those that can walk do without thought or appreciation. So what. I do things differently. I use a wheelchair and the barriers I encounter are numerous and unnecessary. Yet when I go outside my home and feel the sun on my face I too am happy. I am sure Crews is happy when he too feels the sun on his face. I cannot walk along the shores of Lake Michigan. I have instead paddled along the shore in my kayak. I have enjoyed pushing my wheelchair for many miles in the city of Chicago and been to many of its famous museums and done research at the University of Chicago. I have eaten at many steak houses and consumed my fair share of deep dish pizza and hot dogs too. In doing so I have concluded life is pretty sweet. The problem is not with my body but with the maudlin sentiments in the UWM Post and larger news outlets like the New York Times, Chicago Tribune, and LA Times help perpetuate. All these papers have assumed Crews request to die is reasonable. Sorry this is just wrong. If I have learned anything about life since I was paralyzed when I was 18 years old it is that life is what you make it. I consider myself lucky. I have a great family, a son I adore and love more than I ever thought possible, good friends, and a lovely home. I did not get all these things in a social vacuum. Life may be what you make it to borrow a trite old phrase but I would add the proviso people need to be given a chance and that chance includes social supports. In this era of draconian budget cuts and health insurance companies that operate without ethics or government oversight people like Crews have virtually no chance to lead a rich and full life. To me that is the real story, one that has been ignored.

Purple Feather: Offensive in the Extreme

I am stunned by the embedded video produced by Purple Feather, a UK based company. Stunned. Shocked. Offended. Take your pick all would describe my reaction. I rarely post anything about disability rights outside of the United States. I stick with matters as they pertain to the United States because disability is perceived differently in other countries. Sure I am familiar with issues abroad, especially as they relate to Canada and the U.K., but I prefer to keep a focus on this country. We clearly have enough problems of our own. Yet I do from time to time comment about issues abroad. When I do so it is because i have a very strong reaction to a gross injustice that has taken place. The embedded video fits into this category.

I know nothing about the company Purple Feather, an online content specialist. This company writes online and offline content for websites, magazines, books, newsletters, marketing campaigns etc. I suppose they are good at what they do. Portraying people with a disability in a negative way is something i have railed against in the past. It is nothing new. This video however sets an all time new low. While I rail against ads that portray people who use a wheelchair as dependent, this video takes it even further. No pretense is made about the fact a blind man is begging. Ho hum, an every day event I suppose. Shockingly, from an international perspective it is common--the most common world wide "job" for a person with a disability according the the UN is begging. This man is dehumanized in the extreme. The poor bastard cannot not even write a sign worthy of a beggar. This is left to an able bodied woman. You know those all powerful people that can walk, hear, and see. No thought, none, is given to why people with a disability may be forced onto the street to beg. No thought is given to how a blind person can do the ordinary--you know like enjoy a beautiful sunny day. If you are blind you could not appreciate such a day. If you are blind you are reduced to begging on the street. If you are blind you are helpless, dependent upon others. Enter soaring music and pulling at the heart strings of people that know nothing about disability. Judging by the comments posted on You Tube the vast majority of people that saw the video loved it. Yes, it was "moving", "inspirational", "touching" etc.And how many people saw this so called "moving" video. Almost one million! Of those that took the time to press "like" they numbered a staggering 6,621. People such as myself that pressed "dislike" numbered a meager 67. Now I try to ignore comments such as like versus dislike but this made my blood pressure soar! Worse yet, I think it represents the depth of knowledge people have about disability. Here I would put that knowledge close to nil. I do not think people are stupid but rather uneducated. We simply choose not to teach people about disability. We choose not to think disability rights and civil rights are comparable. We choose not to include memoirs written by people with a disability in secondary school curriculums. We do not have disability studies department at every major university. We choose to ignore the ADA whenever possible in the USA. We choose not to employ people with a disability. We choose to provide sub standard education for people with a disability. It is no wonder we rarely see those pesky people with a disability out in public. When we do see them what do we expect to see? According to this film, on the street begging with a shitty sign. But despair not! A good hearted woman will edit that sign and her fellow exemplars of civilization will drop a few coins in the man's tin jar. Is this 1911 or 2011?

Okay, it is obvious I am mad--very mad. And to borrow the classic film line "I am mad as hell and I am not going to take it any more!" Here is what I want readers to do. Send Purple Feather a very angry email. Go to You Tube and mark this film as offensive content. I for one am offended. This is what I did and I swear if this was a US based company I would call up the CEO and complain vociferously.

Education: A Total Failure

I hate the term special education. To me, there is nothing special about special education. When I was a child they did not call it special education. We had three groups of kids--the smart kids (blue birds), average kids (robins), and the dumb kids (sparrows). We kids all knew who was smart, average, and stupid. The names of pretty little birds was just sanitized window dressing. That window dressing would become and remains known as special education. Special education serves a purpose and does educate those kids deemed "special" as well as those considered "normal" or worse, "gifted". What is taught involves far more than what is deemed important in the classroom. In fact I would argue what takes place in the classroom is of secondary importance. Education puts us on a social path, it is a marker of what we are, will be, and can be. For people with a disability that path involves social negation--we are not defined by who we are but what we are not. What we are not is normal--normal as defined by an educational system that does not see potential but abnormality. We cannot walk. We cannot read. We cannot see. We cannot hear. We cannot learn at the socially prescribed rate. All we are told is what we cannot do. What we cannot do is bad. We are bad. Accordingly, our expectations are limited. We are taught not to expect equality. We do not expect an equal education. We do not expect to be treated with respect. Resentment to our very existence and any money spent on our education abounds. This message is delivered efficiently in secondary schools by our peers, other parents, teachers, the PTA, and administrators.

The clearest symbol of the failure to educate those with disabilities and all who are in some way different is the dreaded short bus. Ask any person who had a disability as a child and mention the short bus and you are sure to prompt a strong reaction. The short bus was supposed to represent progress. And amazingly it was progress. Prior to the passage of IDEA, Individuals with Disabilities Education Act in 1975 children with disabilities were not entitled to a public education. We were banned from public schools for a host of dubious reasons. People such as myself who used a wheelchair for instance were deemed a fire and safety hazard. While the law stated we were entitled to an education we were and to a degree remain segregated. The easiest means of segregation was rooted to the transportation system. Yes, the dreaded short bus is effectively used to this day to segregate students with disabilities. For example, the public school my son attended in the wealthy suburbs of New York has one bus with a wheelchair lift--one. Let me repeat that--one bus circa 2011 or 36 years after IDEA was passed into law (20 years after the ADA). On that short bus every single child with a disability in the district is transported to and from school and on class trips. My son would not be caught dead on that short bus the kids call "the retard bus". Now that is is an education! Children have been taught segregation is the norm. The normal kids rule. The normal kids have power. Kids with a disability are different, special. Being different is judged in relation to the norm. The norm does not include people with a disability. Special education, the short bus and the utter lack of social integration is about establishing lifelong boundaries. We people with a disability are on the outside looking in. The fabric of society does not include people with disabilities. We are broken, sick, wheelchair bound--anything but normal. Lenny Davis has eloquently written about this in Enforcing Normalcy.

The consequences of our failure to teach all children that people, young and old alike, with a disability are equal has profound social and economic consequences. 66% of Americans with a disability are unemployed. A third of people with a disability live at or below the poverty line. Only a small percentage of people with a disability have a college education. An even smaller number, a microscopic percentage, have an advanced degree such as mine. This is a costly failure. It is a failure that leads to social invisibility. We people with a disability live at the margins of social respectability. We were not accepted in schools and we are not accepted in the work force. Our presence is not required or even expected. In this era of draconian budget cuts in education and services for people with disabilities these are grim times. We may be saving money now but I wonder about the social consequences. I wonder how many people with a disability turn their failure to receive an education or a secure a job into self loathing--a personal failure. It is understandable to direct failure inward--I still vividly recall when I was first disabled I was stunned at how differently I was treated. I felt as though I had the plague. I felt as though I was the same person but I sure as hell was not treated as I once was. This caused me to withdraw from others. When I went to college I spent way too much time drinking and smoking pot. I partied hard but I also worked hard at academics--something I was inherently good at. Somehow I knew that education was the only thing that could save me from a life of despair. I was also blessed with outstanding parents who supported and fought right along side me against social injustice. In retrospect these two variables, an outstanding education and supportive parents, are what successful people with a disability have in common. Getting an equal education is very difficult for any person with a disability and good parents are a matter of luck. I was especially lucky--indeed I joke that I hit the parent lottery. But I did have to fight for an education. Sadly, that fight for an education is something people with a disability must still undertake. That fight is different from what I endured. No person is barred from school and told they are a fire hazard. But this does not mean bigotry and exclusion are absent. That fight today entails a lack of equal transportation, socially sanitized and accepted segregation, deep budget cuts as well as resentment "normal" kids somehow are neglected.

The above has been on my mind since i read Jonathan Mooney's wonderful book The Short Bus. This book is filled with delightful stories in a wickedly twisted way. It like a cripple Kerouac's On the Road. I highly recommend this book for it does what few books ever do--make you laugh and think at the same time. How this book made me yearn to travel. As soon as my wound is healed I am going to hit the road. Where i am going, I have no idea. But go I will for travel is akin to a real special education. And if there is one thing I still yearn for it is education.