Glee Makes me Glum

I have refrained from commenting on the television program Glee. Much has been written about the fact the actor that plays Arnie, a paraplegic, is not paralyzed. Like many others, I find this troublesome. Surely there must be a paralyzed actor in America that is qualified for the part. I have not commented on Glee for two reasons: first, I do not like the show in spite of its apparent popularity with young people. Second, the episodes I have seen that deal with disability are a bizarre mix of astute observations and dreadful stereotypes. However the most recent episode contained no insights and just demeaning images and messages. I was stunned by what I saw. It was as if the directors took a step back in time, well before the ADA was passed to an era in which disability was akin to a social death.

At WHEELIE cATHOLIC it was observed:

"The problem with all this is that children and teens, who still buy into the fantasy of the entertainment world, are watching Glee in large numbers. Meanwhile, kids I love are being excluded in real life from class trips and social and educational opportunities, mainly because of how society thinks about disability. Just think about the messages sent in last night's episode:

You can't walk, so you can't dance.
You can't walk, so you can sit over there and wait while I get you a pretzel upstairs.
You can't walk, so sit in one spot and hold this for me.

And then:

I can't walk, so get another partner.
I can't walk, so I can't dance, I'll just sing.
I can't walk, so I can't realize my dream.

Message after message of what Arnie, the kid in a wheelchair, can't do. No wonder kids with disabilities are still excluded from opportunities. It's not because of their wheelchairs or because they can't walk far enough- it's because of how we think about disability. How teachers, educators and peers think about it. How they themselves are taught to think about it."

I have been paralyzed for over 30 years and I find it impossible to understand the constant never ending focus on what cannot be done. I cannot walk. That is a fact. So what. Walking as I have noted many times is over rated. Bipedal people really need to get over themselves. Just because a person can walk does not make them superior to those that cannot. But this is deeply embedded cultural belief. Disability is bad, walking is good. It is a mantra we are all unknowingly taught. The ramifications as WHEELIE cATHOLIC eloquently puts it are profound. Here is what I think when I come across other paralyzed people: What are they good at? How have they adapted and overcome social bigotry? Do they rail against social oblivion? The key difference is that I only see possibility and ability. I do not think or much less consider what cannot be done. This is the exact opposite from the message sent by the latest episode of Glee. For goodness sake I have never met a person that is paralyzed and dreams of walking or dancing. If a person that uses a wheelchair wants to dance, well, they dance. I do not know one person that researches for cure nor anyone dumb enough to try and get out of their wheelchair as Arnie did. This is stupid and melodramatic. Sadly, the producers must think this makes good drama and television.

Sadly, I see no hope for the future. Television caters to cultural cliches and dominate ideals held dear by society. If Glee wants to provide a gritty dream by a real life crippled guy here is one I would love to see. A hard ass crippled dude that refuses to take any crap. A person that asserts their rights and when they are violated lets others know it. How about a buff high-school paraplegic that blocks a school bus from leaving school because there is no wheelchair lift. Rather than support, our bad ass crippled dude is jeered by his peers. This sort of visual image and message sent would not sit well with the general public. However, it would be educational to a young audience. I would even like to believe such a message would be well received by young people.

Feel Good Stories are Impossible to Kill

The signature wounds of the Iraq war are to the best of my knowledge traumatic brain injuries and amputations. Stories about traumatic brain injury are hard to find but it seems to me that I routinely read about amputees. The focus when dealing with amputees, especially returning veterans, is the same--prosthetic technology technology is amazing as is the will to move on with life on the part of some people. I am a sucker for these feel good stories that mix technology and with raw emotion. I am drawn to them and repulsed at the same time. Once such story that appeared on CBS news last week has stuck with me. The story was about Brendan Marrocco, a man from nearby Staten Island, N.Y and the only soldier to lose all four limbs and survive. The fact Mr. Marrocco is alive is amazing--he was not expected to live. What is not so amazing is the way his story is portrayed. In melodramatic fashion, CBS reports: "Every once in a while, something happens or we meet someone and the experience is so powerful, it forces us to stop a minute and think--and maybe readjust how we feel about our lives and the world around us". Thus begins the story by David Martin about Mr. Marrocco who is characterized as an "amazing man" who "lost all his limb fighting for his country but never gave up his American spirit". According to Martin, Mr. Marrocco has "a very good sense of balance--physical and emotional" who vows "I will not sit down and let my injuries take over my life". Mr. Marraccco's physical therapist, Luis Garcia, notes that working with a quadruple amputee is "a lot easier than I thought it would be because of his character and personality".

I have no doubt Mr. Marrocco is a strong willed man. I have no doubt he has worked hard during his rehab. I am sure he will lead a productive life. I may sound harsh but I cannot help but add so what. Think about it this way" Mr. Marrocco is 23 years old and engaged to be married. His entire adult life is ahead of him. Why should he not be looking ahead and planning to live a rich and rewarding life? Does he face daunting obstacles without limbs? You bet he does. But are those obstacle social or practical? One gets only a passing reference to the real struggles Mr. Marrocco will encounter. What I found of most interest was his comparison of missing his arms as opposed to his legs. Mr. Marrocco is quoted "Without legs you can still be independent. You know, without arms there's so much more you can't do". While I am not an amputee I can directly relate to this observation. To me, my legs are superfluous appendages. My legs do not function though they are still useful in many ways. And yet I often wonder what my life would be like if I did not have the full use of my arms. Now this is a story worth reporting about. What obstacles do people without arms or the use of their arms face in comparison to those without legs or the use of them? How does the rehab experienced differ? What sort of future do such people have? What do we get in place of these sorts of hard questions? Fluff. Mr. Marrocco met Tiger Woods! Mr. Marrocco hit the ski slopes. Again, I emphatically state so what. Why shouldn't Mr. Marrocco ski and play golf? That is what adaptive sports is all about and Mr. Marrocco is no different than many others. But this thought process is never what the mainstream media presents. Instead we get dreadful lines such as those already quoted or "After meeting Marrocco its hard to take anything in your own life for granted".

No wonder the social interaction between those with and those without a disability is so skewed. We people with a disability are not really fully human but an ever present reminder of how grateful others should be for having an ordinary life, one that does not involve paralysis or losing limbs or any other physical deficit. When I read stories such as the one in question I want to run out my door and shout "I am a human being". I do not envy Mr. Marroccco for I can well imagine the practical and social obstacles he will encounter. I can also state I do not nor did I ever want to be paralyzed. But life this is my life I will make the best of it. This is a uniquely human penchant and thus I differ not one iota from others. The difference I experience as a paralyzed man is socially constructed. The socially constructed barriers are propagated by feel good stories the mainstream media loves to publish and the public soaks up. Until this changes the social obstacles I encounter will never be ameliorated.

Becoming a Social Butterfly

I am not the most social person in the world. When I mentioned this to my son he laughed out loud and said "Dad, you are not social, you are anti-social and don't like people". It was my turn to laugh and admit my son was correct. I do not like to socialize and do my best to avoid groups of people. I will also admit there are many people I meet and must interact with that I do not like. The reason I am "anti-social" in my son's estimation are personal a practical. I struggle to keep up in groups--my mind does not work fast enough to enjoy much less participate in conversations. It does not help that much of the conversation takes place about two feet above my head and I miss much of what is said. But truth be told, I much prefer the company of one or two other people. When invited to parties or conferences I routinely turn down such opportunities. This has me wondering why I am thinking about attending a large event. Here I refer to the Disability Power and Pride Gala Celebration to commemorate the 20th anniversary of the ADA to be held on July 26.

I had thought of having a small party on July 26 at my home. But virtually no one I know would appreciate the significance of the event. When I saw the announcement for the Disability Power and Pride Gala my first thought was that I would never go to such an event. This party is for rich and connected crippled people. It is held in Washington and surely must cost a fortune to attend. Afterall it is not a party but a gala. Galas are expensive. To confirm my prejudice I looked up how much tickets to the gala cost. Much to my chagrin they were $100 a seat. I figured the cost would be five to ten times higher. My next thought was that I could live with spending $100 for a ticket given the fact I would be surrounded by people that appreciate the significance of the ADA. What in the world is going on with me? Yes, $100 is a lot of money but not when compared to the cost of a ticket to a professional sporting event or show on Broadway in New York. I think spending $100 to attend a gala, not a party or celebration mind you, is reasonable. Thus I am impressed. The gala organizers are not looking to attract only rich crippled people as I mistakenly assumed. I also heard that the first Inaugural Ball held in 2009 was a big success. I spoke to a person that attended and saw clips of performances on You Tube. So, maybe I will go to the gala. Does this mean I am turning into a social butterfly? When I expressed this sentiment to my son he gave me a withering look of disdain only a teenager can deliver to a parent and said "Dad, for you becoming a social butterfly is just not going to happen--ever". Now those are fighting words. I think I may go just to shock my son.

Being a Parent with a Disability

In about ten days I will be presenting a paper at a conference: Disability and Ethics Through the Life Cycle: Cases, Controversies & Finding Common Ground. The conference is at Union College and my paper is part of a session entitled "The Reproductive Years: Ethics and Disability". This will be my second conference in about a month--unusual for me. Given the subject matter of my upcoming talk, parenting with a disability, I have been rather retrospective. Personally I find it a shock that my son is a legal adult and will head off to college next Fall. How and when I wonder did he and I get so old. Academically, these thoughts have been mirrored by the knowledge the 20th anniversary of the ADA is upon us. Of course, this has not garnered much if any news in the mainstream media. Regardless, the fact the birth of my son and the passage of the ADA took place at roughly the same time has made me think about how the cultural perception of disability has changed in the last two decades.

The express purpose of the ADA was to “establish a clear and comprehensive prohibition of discrimination on the basis of disability”. For the first time in American history and in my life as a man with a disability I was awarded similar protections against discrimination that the Civil Rights Act of 1964 guaranteed others based on race, religion, and national origins. While the ADA theoretically made me equal and placed the law firmly on my side, American society did not suddenly accept people with disability. In fact I believe rampant discrimination against people with a disability is as common today as it was in 1990. What has changed is the sort of discrimination people with a disability encounter and this is indicative of two distinct eras in disability history—the pre and post ADA time periods, eras bisected by my son's birth. In brief, the discrimination people with a disability encountered prior to the passage of the ADA was blatant and destructive. An untold number of lives were destroyed. In the post ADA era discrimination is far more insidious and polite though no less destructive. Most agree discrimination against people with a disability is wrong but support services are grossly under funded and basic access remains problematic at best.

Progress in terms of disability rights has been made largely through the efforts of disability rights groups such as ADAPT, Disability Rights and Education Defense Fund, Not Dead Yet and others too numerous to mention. Today, people with a disability can boldly proclaim they are “disabled and proud”. I too am disabled and proud and my identity is closely tied to my disability in a positive manner. For this, I owe the disability rights movement a great debt. This pride and my background in anthropology, particularly my association with Robert Murphy, empowered me to understand and reject the stigma associated with using a wheelchair. Rejecting the overpowering presence of discrimination past and present is not easy. I still vividly recall the discrimination I experienced as the parent of a new-born child circa 1992. Strangers blatantly questioned my ability to father a child. Every time I went out with my son a person would inevitably ask “Are you the biological father?. Others questioned my ability to and care for a child and more than one pediatrician grilled me on how I physically cared for my son. This sort of bigotry was a constant theme that I encountered.

At the time my son was born I was flagrantly violating social norms associated with disability: I was highly educated, articulate, employed, married, and a father. None of these ordinary life experiences were or are associated with disability despite the fact there are an estimated 8 million families that include a parent with a disability. But fatherhood made me stand out (pun intended). As a parent, I suddenly became public property. Anonymity was not possible. Strangers, friends, family, and all those I encountered had an opinion about my ability to parent and care for a child. No one hesitated to express their opinion and the questions directed at me were stunning. I was shocked by my loss of privacy and the utter lack of trust in my ability to care for another human being. The message sent via this constant assault on my abilities was crystal clear: paralyzed people such as myself were not parental material. My disability precluded parenting a child.

The assumption paralyzed people could not become parents was wrong. It also affects a larger number of people. According to the Brain & Spinal.org approximately 12,000 spinal cord injuries occur a year. Although exact figures are hard to determine, it is estimated that between 229,000 and 306,000 people live much of their life with a spinal cord injury. Most of these people (80%) are men who are of age when they can expect to become a parent. In terms of parenting, spinal cord injury affects both men and women. Following a spinal cord injury women may become amenorrheic for up to a year. However, once their cycle returns to normal they can conceive and bear children. The birth rate among those women with a spinal cord injury is very similar to the general female population. In contrast to the normal fertility experienced by women with spinal cord injury, most men experience fertility impairments. These impairments range widely from erectile and ejaculatory dysfunction to poor semen motility. Some within the medical profession maintain fertility impairments alone account for the fact that only 1% of men with a spinal cord injury father a child. I maintain the reasons why men with a spinal cord injury do not become fathers is more social than medical. According to the medical literature 95% of paralyzed men produce semen. With access to rudimentary reproductive technology these men can become fathers. The disparity between the aforementioned statistics reveals a profound cultural prejudice exists: men who are paralyzed are not expected to become parents. The reason why this false assumption still exists is perplexing. It highlights that what laws such as the ADA state and cultural reality are very different. Sure, we paralyzed people are equal in the eyes of the court but that is not nor has ever been reflected in my experiences as a man and father. Why I wonder has progress for disability rights been glacially slow? This is a question that has kept me up many a night and for which I have no ready or simple answer. What I do know is that the disability prejudice I encounter drives me. I fight back for myself and others in the hope that someday people will see paralysis as nothing more than a practical problem, one that has a myriad of well established solutions.

The ADA, Procrastination and Gas Pumps

I have a stack of final exams on my desk that must be graded. This is serious work with a firm deadline I always meet. Yet I will do almost anything to avoid grading the exams. I love teaching but not grading. Grading exams is hard work and students are under great pressure to get good grades. I sympathize with students but can only base my assessment of their work based on what they hand in to me. This leads to frustration and, right now, procrastination in the form of this post and a need to fill the gas tank of my car. Yes, I needed gas but I really did not need to go out and fill up the tank this morning. I wanted to avoid my exams, get out in the early morning fresh air, and enjoy a short drive. So there I am pumping my gas when I noticed the blue wheelchair logo on the pump in the bright sunlight. I have not read the little wheelchair logo post in quite some time. However, I do know the law--here I refer to the ADA as it relates to assistance for disabled drivers at self service gas stations. What does the law state? Gas stations have the duty to assist disabled persons at the gas pump. The ADA requires self service stations to provide equal access to their customers. If more than one employee is on duty a gas station must provide refueling assistance to a disabled individual who has a handicapped placard or license plate. Customers with a disability let the service station know they need help by honking twice or signaling an employee. Gas stations may not charge a disabled person for pumping their gas.

I have been driving for over 30 years. Not once have I seen or heard of a disabled person being assisted at a gas station. Like anyone else, I have pumped my own gas on rainy days, in frigid cold, and searing heat. No one has ever asked me if I needed or wanted help. While I have never tried to seek the assistance of a station attendant, I find it hard to imagine this would go over well. Gas stations present many obstacles in terms of access. Bathrooms, aside from often being filthy, are rarely accessible. Ramps to enter the station are often blocked by fire wood in the winter and cases of water in the summer. If one can enter a station the aisles are so narrow they are impossible to navigate. Beer is stacked high and junk food abounds.

While the obstacles at gas stations and an obscure part of the ADA such as assisting disabled gas station customers may seem to be inconsequential, it highlights a larger problem. The ADA is just not taken seriously or poorly understood. Add in the ADA is often interpreted by people who know little about disability nor have an interest in making a business accessible and it is no wonder barriers abound. But it is not just businesses that seek to avoid the ADA. Schools, both public and private, routinely ignore or avoid ADA regulations. I had to shame my son's secondary school into making the auditorium accessible and even when they renovated it did not follow ADA guidelines. The university where I teach is grossly inaccessible and is a SUNY school! My point is that the lack of access at my local has station is symbolic of a much larger problem--the ADA is ignored or, worse, unknown. I hope that with the 20th anniversary of the ADA around the corner this may change. Moreover, it is my hope that the ADA will become known for what it really is: civil rights legislation. While I have great hopes, given the dismal state of the economy and lack of interest, I do not really expect the 20th anniversary of the ADA to resonate with the general public. However, I am planning on having a big party at my home next July to celebrate. While most Americans do not care, I for one I am grateful and proud to know a law like the ADA exists and that we elected legislators who had the wisdom to pen such civil rights legislation.

Is Being An Ordinary Human Possible

It is a gloomy morning and the weather matches my mood. I am not happy and I know why. I feel estranged from society and grossly misunderstood by the average citizen. Indeed, I feel like a cartoon character. I can never win for two popular perceptions of disability exist and dominate cultural discourse. Option one: I am a super cripple able to do amazing things. I am married or divorced, employed, and participate in outdoor activities. Yes, we cripple people can ski, kayak, camp, and go for hikes. For leading an ordinary life we super cripples are put on a pedestal and admired because we have "overcome our disability". Most importantly, we super cripples put all those other lazy crippled people to shame as they surely spend their time feeling sorry for themselves. Option 2: The socially dependent mess. These people lack the character to overcome their disability. They have no job. They live at home with family well past an acceptable age or worse yet are dependent upon the government. The dependent mess has no life, sits around feeling sorry for themselves and have no future. I despise both these simplistic and misleading options.

How and why I wonder are people with no knowledge of disability so stupid. In large part I blame the mainstream media. Sob stories about disability abound. Here I refer to the heart breaking story about an ordinary person that is struck down by a disability and their life is destroyed. The reader counts his or her blessings and moves on with their day. The message however is clear, disability is bad and can run your life. The other extreme reference to disability is one I have learned to detest because I am too often put in this category--the super cripple! There was a long article in the New York Times that took the super cripple to a new and bizarre extreme. The story was a hybrid--the person portrayed, Dayniah Manderson, was a super cripple but doomed by their disability at the same time. Here I am referring to the NYT story "Bent Not Broken" by Kassie Bracken and Erik Olson (April 30) that was accompanied by a ten minute video. By the time I was done reading this story I was livid. Maudlin in the extreme, lines such as "From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit--a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world" were painful to read. Worse yet her friend and doctor, Roberta Shapiro, who "counseled" Manderson and secured life saving surgery for her dramatically states "I couldn't live inside her body".

Deconstructing the NYT story is of no interest to me. I have done this before and it is not worth the effort to do so again. Rather, what I am amazed at are the issues raised and dismissed or utterly ignored in the story. Manderson is a minority within a minority as the presence of women with a disability is unusual. Manderson is also a woman of color from Montego Bay, Jamaica who was incorrectly diagnosed with muscular dystrophy when she was two years old. She moved to the United States in 1995 where she excelled academically. She gradated from New York University with an MA. She is a mother and is currently a teacher at an elementary school. These bare bones facts are about as ordinary as ordinary can be. However, scattered in the story are the following:

Manderson is dropped off at school an hour before he colleagues at a locked handicapped accessible entrance.

She uses Access-a-Ride.

The elevator where she works is often broken.

She often is forced to dehydrate herself at work.

She moved to the USA when a local doctor offered to treat her for "evil spirits".

Her motorized wheelchair cost $35,000.

Golly is she not an amazing woman to overcome all of the above. In a word, no. What Manderson is overcoming is an utter lack of support for the law, civil rights legislation, known as the ADA passed almost 20 years ago. Many of the so called obstacles Manderson encounters are illegal or certainly wrong and were supposed to have been eliminated long ago. At no point does the article mention that Access-a-Ride is on of the worst para-transit systems in the United States. No mention is made of why she must arrive well before her colleagues or at an accessible entrance that is locked. No mention is made of why the elevators are broken or that moving a class is a legally required reasonable accommodation. No mention is made of why her wheelchair costs as much as a car. No mention is made of why she regularly dehydrates herself at work. No mention is made of how she managed to escape institutionalization in Jamaica. No mention is made of how she managed to get into or graduate from New York University. What do we get instead? Drama and more drama and life saving surgery replete with x-rays to accompany the story. A fascinating life that could have been used to highlight its complexity is reduced to a carton image of a woman overcoming her disability. No wonder people do not understand disability and it cultural implications. No wonder people do not think the ADA is civil rights legislation. In the place of real reporting, real information we get simplistic heart warming stories about a super cripple that has overcome her disability. Those ignorant about the social obstacles people with a disability encounter on a daily basis are not discussed. Social progress is not made, stereotypes remain common place, and people with a disability continue to remain the most disenfranchised minority in not just the USA but the world. No wonder I feel estranged from society.

Smoothing the Way--How Long Will it Take

A few days ago the New York Times published an odd story about travel for people with disabilities. In "Smoothing the Way" by Tanya Mohn I was amazed she acknowledged that "people with disabilities never have an easy time traveling". However, I was bitterly disappointed by the second part of her sentence--"a rash of recent improvements including more wheelchair taxis and rental vehicles... have made it easier". This assessment is correct. More taxis at airports will transport people with a disability. More rent-a-car companies have cars with hand controls. What is not acknowledged is the quality of these ordinary services. Sure I can get a taxi at any airport. That does not mean the driver will be happy or even make the pretense I am an ordinary passenger. It does not mean he will not try to rip me off via turning on the meter before I enter the car or well after I exit. Similarly, airline personnel routinely consider passengers with a disability to be extra work and are not hesitate to makes this point clear. Rudeness is the norm and I feel as though I have the plague when I fly. If I assert my rights, I am deemed difficult. The fact what I request, pre boarding for instance, is a matter of law and has been for nearly two decades is of no consequence. I am simply a pain in the ass for an overworked employee.

While I could write pages about my dislike for airlines, I have a special ire for car rental companies. When I rent a car I would estimate 50% of the time the vehicle with hand controls is not present. The company does not mater--Hertz, Avis, National, Enterprise all screw up. Each and every time I rent a car with hand controls it is as though it has never been done before. I also go to extremes--I call 48 hours in advance, call the night before, and morning of the rental to confirm the car with hand controls. I get assurances with each call but the car is never there when I need it. One would imagine this is not a complicated request. The only good thing about not having a car ready to go when I arrive is the free upgrade or steep discount for my inconvenience. But I would gladly trade this for a car when desired. In other words, I wish to be treated like an ordinary customer.

Travel has been on my mind as I am just back from the conference in Baltimore. I think the conference went well. It was well attended and I met many people in the health care profession that clearly care about disability. I hope this care and concern will some day filter down to the care people with a disability receive when accessing health care. What amazed me about the trip was how problem free it was--a rarity. The hotel room was accessible and parking quite easy. The conference presented no barriers--in fact the organizers were on top of every access issue imaginable. I was treated with respect from beginning to end. Wow, I wish all my trips went as smoothly. Sadly, I know this is not the norm even though it should be. On the drive home and upon reading the article in the New York Times mentioned above I cannot help but wonder why travel remains so problematic for people with disabilities. Is it a numbers game? Are there too few of us for airlines, hotels, and car companies to care? I think not. The numbers often quoted in the mainstream media indicate people with a disability that travel has increased significantly. What I think is going on is a culture clash--people with a disability are not expected to travel, assert their rights and certainly not be treated equally. Our presence is an afront to others and the travel industry does not respect us as a group. The result is inferior if not bad service and I assure you travel is rarely smooth or trouble free. In fact what struck me the most about my recent trip was the fact it was trouble free. I thus realized I assume trouble will take place whenever I travel. This is my norm. A norm that must change and I would argue we have a long way to travel to make this happen (sorry for the bad pun).