Story Telling

Like most anthropologists, I love to tell stories. We anthropologists tend to be very good story tellers. When we do ethnographic research we listen carefully. We also participate in every day life of those we study. We encourage our informants and "our people" to tell stories. We then use those stories to write about cultures different than our own. Often those cultures live in remote regions of the world. My mentor at Columbia University, Robert F. Murphy, studied the Tuareg and Munduracu. He was among the best story tellers I ever had the pleasure of listening to. Murphy could make you laugh, cry and think all at the same time. He was nothing short of brilliant. He was far from alone. Many anthropologists are truly engaging people. Most anthropologists are gifted speakers and lecturers. Exceptions exist of course. I have sat through some pretty boring and dry lectures delivered by well known anthropologists who I shall not name.

The point here is I tell lots of stories. I am an entertaining speaker which is not easy to do when I often write about end of life and assisted suicide legislation. In part I am a good story teller because I have led a very different life. Growing up I went through the medical mill. I was not expected to survive, few of us did in the era before advanced medical imaging. When I was a kid if a physician wanted to know what was going on inside the body one got a spinal tap or had surgery. I had a lot of spinal taps. I had a lot of surgery. I suffered. I endured. To cope, I became a wise ass and made a concerted effort to be subversive. As the youngest in my family, I became a skilled instigator. I put on a facade of innocence but I was a devilish kid. I had the inate ability to rile people up and appear ever so innocent. What I did not like was mind numbing routine. Hospitals, like any institution, are utterly dependent on routine. As a kid I knew exactly what time it was because hospital routine never changed. I was desperate to escape the inertia of ward life. One way I maintained my sanity was to undermine or disrupt ordinary medical examinations. There was a down side to my quiet rebellion and penchant to undermine authority. A while ago I told a story to my good friend Diane Wiener. She was quite bemused. After I told my story she asked me to retell the story on my blog. I promised to do so. I will now follow through on this promise.

This is a very old story that I have told it many times. The year was 1977. In the state of New York and many others teens can get a drivers license at age 16. I waited until I was 17 years old to express any interest in driving. I asked my mother to take me to the dreaded motor vehicle office. I had studied the DMV book and scheduled a written drivers test. I passed the test and was good to go or so I thought. The only thing left to do was demonstrate I had typical vision. A very bored woman asked me to read the fourth line on the chart. I said what line. My mother looked at me with daggers in her eye. DMV is not the place to joke around. She knew me too well. In the past I had thoroughly enjoyed undermining residents who admitted me to the hospital. When it got to a question about my hearing I replied "What?" multiple times. Some residents did not get the joke while others simply rolled their eyes and pressed on. No one was ever truly amused except myself. Keenly aware and afraid of my mother I stated all I could see was a fuzzy E. I was not joking. I was profoundly near sighted. I had spent years in and out of various neurological wards. I was so sick no one ever bothered to check my vision. This is not a complaint. Physicians were far too busy trying to keep me alive.

The lack of vision testing is clear evidence I took nonconformity a bit too far. It was also proof positive I missed most of my formal secondary education. Regardless, when I went to school with my driving glasses I was astounded. I could see the classroom board. The board was a real thing not some abstract idea teachers talked about. In geometry class I saw lines for the first time. In math class for the first time I could see the problems written on the board. In science class I could see the periodic table. I did not have to memorize the periodic table! I  missed so much school I simply assumed I had to memorize what the teacher said. I knew the board was on wall at the front of a classroom but I could not see what was written on it. I vividly recall thinking my God school just became very easy. On the rare occasion I was well enough to attend school I subsequently spent all my time letting my imagination wander. With a board I could see I no longer needed to pay attention to what the teacher was saying.

I have worn glasses every day since 1977. My near sighted vision became worse each and every year. I have relied on an increasingly strong prescription since I was a teenager. Each time I get a  new prescription I chuckle and tell my story. Every time I meet a teen about to apply for their license I tell this story. It is a good story. It is a story that reminds me that sometimes being ordinary, following protocol and routine is not such a bad thing. This is a lesson my son has struggled to learn. I guess the apple does not fall far from the tree.

Gang of 19

I have been thinking a lot about the Gang of 19. I am not referring to a prison gang or some bad ass biker gang. I am referring to a small group of people with a disability who were angry that they were dependent upon substandard paratransit in downtown Denver. The year was 1978 but the long simmering anger began in 1973. People familiar with disability rights know the story all too well and the central figures involved. It all started with 60 people. 60 angry people. 60 angry crippled people. And then 19 angry crippled people who on July 5 put their bodies on the line. Every time I get on a bus I think of the Gang of 19. Every time I go up a ramp or lift on a mass transit bus I give a silent nod of my head in respect. I can get on the bus because 19 people and their allies fought hard to insure buses across the nation had wheelchair lifts and ramps. The Gang of 19 was the epicenter of the move to make the buses wheelchair accessible. It all started at 10am at the corner of Colfax and Broadway. A small monument is at the corner with the names of the individuals involved. When in Denver I place flowers at the monument.

The story of the Gang of 19 is well known and is best detailed in To Ride the Public's Buses: The Fight that Built a Movement edited by Mary Johnson and Barrett Shaw. I remember reading about the Gang of 19 in the newspapers. I was a freshly minted cripple--I was paralyzed only a few months before when I started reading about the protest in Denver. I didn't know what to think. I was busy and  frankly did not pay too much attention. I was working hard to get through the day. I was focused on my ADLs--activities of daily living. How do I get my pants on; how do I transfer from wheelchair to car, couch, toilet, floor etc. How do I drive? How would I figure out getting around the campus of the university I was going to attend? I was about to launch my life as an adult. I was clueless about the ramifications of disability but I was learning fast. The learning curve was steep. Much of my focus was on getting stronger. I had not been medically stable for a decade. I was rail thin--I barely topped 100 pounds. Every day was a grind. Doing the ordinary was physically exhausting.

I did not know it at the time but I was about to get a crash course on disability based bigotry in NYC. After I got my BA I moved to the city. I became an EPVA bus buddy. In NYC then Mayor Koch was adamantly opposed to wheelchair lifts on the buses as were most people at the time. Like Denver, we wheelchair users forced ourselves onto the bus. The two men using wheelchairs above, one of whom is holding the bumper of the bus, were practicing a classic technique. Either one or two people using wheelchairs got in front of the bus at the same time another person also using a wheelchair got behind the bus. Effectively trapped, the bus driver had to either deploy the lift or accept the bus would not be moving any time soon. This did not endear us to irate bus passengers. I know this history well. I lived it. I was cursed out. I was spit on. I put my body on the line. I was a very minor player in a much larger civil rights movement.  I knew whose side I was one. I became enthralled with all things disability rights based. I knew in the marrow of my bones it was the right thing. I knew it was in my best interest in the present and future. Without access to mass transportation how was I going to get to work when I earned my PhD.

Fast forward to today. I have been reading about a new problem on public buses. In cities across the United States, Canada, and England mothers with strollers large and small are taking over the so called handicapped seating area. What astounds me is if a person using a wheelchair uses the lift and tries to use the designated area to sit those responsible for the infant in the stroller refuse to move. In short, people using a wheelchair are left out on the curb and have no choice but to wait for the next bus. I find this astounding. Mothers in particular were our allies circa 1978. They wanted lifts on the buses too. They supported me and countless others for not just for lifts on buses but curb cuts. While common place in every city and town, curb cuts were as popular as wheelchair lifts. They were often deemed an eye sore and safety hazard. The opposition did not last long--especially in the garment district of NYC. Add in the support of countless bikers and messengers on bikes and every city and town in America began to install curb cuts. In fact they are so common I am told learning how to pop a curb while using a wheelchair is no longer taught to newly paralyzed people when they receive rehabilitation.

I am of two minds when it comes to the culture clash between typical people responsible for an infant in a stroller parked in the handicapped seating area on the bus. First, it is now so common for a person using a wheelchair to get on a bus no one really pays attention. This is amazing. It is a concrete example of the great progress disability rights activists have made. My existence on the bus is not worthy of attention. Of course, once in a while you get a cranky biped who will say something nasty but that is outside the norm. Second, what is wrong with people? Are people responsible for the care of an infant in a stroller on a bus really that oblivious or privileged? The space on a bus for a wheelchair user is severely limited. Options are limited to say the least. Typically there is all of one or two spots to sit. The battle between wheelchair users and stroller users has reached England's Supreme Court. I suspect the same legal battle will be fought in the Canadian court system. I assume the United States will not be far behind. At issue is who has the right to the handicapped space on the bus. Is the person responsible for the stroller required to evacuate the handicapped space?  Does a person using a wheelchair have a right to the designated handicapped space?

I have no ready answer for the above questions. I have used many buses in cities coast to coast but have never gotten on a bus and had the handicapped space fully occupied by strollers. I have come across many a biker or older person with a large cart occupying the handicapped space. Some people are polite about moving while some are decidedly nasty. I am not sure why I have not encountered the wheelchair user versus stroller user yet but many others have. The social dynamic here is fascinating. Who holds more social capital? Who will get the social support from fellow bus riders? The CBC published a story about this dilemma in Winnipeg. Link: http://www.cbc.ca/news/canada/manitoba/winnipeg-transit-bus-wheelchair-stroller-manitoba-1.3663019?platform=hootsuite

While I do not have any ready solutions, I do lay the blame on secondary schools. Every school teaches children about the Civil Rights Movement. Every child knows who Martin Luther King is. I suspect every school kid knows who Rosa Parks is as well. I cannot say the same about the members of the Gang of 19. I am willing to bet virtually no school children know a thing about the fight to make buses accessible nationwide. I am equally sure children learn nothing about the disability rights movement. When my son was a boy the ADA was mentioned in passing at best. I doubt much has changed. If people absorb anything about disability during their secondary education it is most likely that the segregation of people with a disability is the norm. We have special buses for those students with a disability. That special bus is routinely a short bus. Using the short bus carries great stigma. Derogatory terms abound about the short bus. It is often dubbed "the retard bus". Countless people with a disability have been deeply scared by being forced to use the short bus. The message sent is clear and distinct: segregation is fine. Special education students use the special bus. They are a class apart. This logic carries into adulthood. I can only speculate that those who refuse to move a stroller from a handicapped area on a bus do so because they have absorbed this inherently destructive lesson. In the wildly entertaining and insightful book The Short Bus by Jonathan Mooney he wrote that the short bus:

serves a social function. Our myth of who we are, who we shall be, is actually created by categorizing people people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they are not than what they are--not normal, not whole--a negation that calls into being its opposite: the normal. The normal looms over all out lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus policies that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us. 

The infant in the stroller is our future. The infant in the stroller is normalcy. The infant in the stroller is a valued member of society.  The infant is a future person who will be a producer of labor. In contrast, the person using a wheelchair is the symbolic representation of the limits of medical science. We cannot cure all afflictions both large and small. We are the personification of tragedy and how fate can deliver crippling blows (pun intended). Wheelchairs by themselves are stigmatizing. The key word here is negation. Bipeds only consider what a person using a wheelchair cannot do. They see a lesser human being. A lesser human being that cannot walk. We wheelchair users have an entirely different perception of a wheelchair. We love our wheelchairs. We know a wheelchair is empowering. It makes life go.

To borrow a line from the film Finding Dory "Suck it bipeds". For those who are on a bus with a stroller get out of the way. Get out of the way of every person using a wheelchair. I fought long and hard to get on that bus. I may have been a bit player in comparison to the Gang of 19 but I was in the game. I fought as hard as I could. So please just move. Take your privilege, social status and stroller and move it. Use a wee bit of common sense. Might you be inconvenienced? Yup, there is no denying that. And, had secondary schools done a better job teaching children about the disability rights movement, we would not have such a needless issue. It took decades for the bus system to be made accessible. People were arrested and laws were changed. A stealth civil rights movement took place. What we need is some serious educational reform. We can start by eliminating all so called special education buses. We can also teach children about the Gang of 19. The names of those who sacrificed so much should be as well known as Rosa Parks.

Prejudice and Alienation

I am making the transition from a rural to urban lifestyle. I no longer have a spectacular view of Lake Cazenovia. My former home was all about the view. Without the view I would not have even considered living there. The draw backs were signifiant. I was limited to two burners and a toaster oven in the kitchen. The drive way though short was steep as in cliff like decent. The home had no air conditioning and I truly suffered in the summer heat. There was no washer dryer. Going to the laundromat was consistently unpleasant. The town of Cazenovia was openly hostile to anything remotely related to wheelchair access. Despite these flaws I thoroughly enjoyed my time in rural Central New York.

I now live in a huge apartment with two female roommates within walking distance to downtown Syracuse. The apartment does not have a view. This apartment is about light and indoor space.  The interior has large windows well over six feet and the ceilings must be at least 15 feet high. This is classic loft living I call industrial chic. The building was once an iron factory and the entire area has been gentrified. I am content in my new digs. I am thoroughly enjoying urban car free life. I walk everywhere and Kate is always by my side. This move is proving to be a great transition for man and dog. The transition has been smooth in terms of logistics but Saturday was a rough day. My roommates moved in and had an army of help. The house was filled with the chaos associated with moving. Suddenly I was surrounded by bipedal people and more stuff than I could have ever imagined. I freaked out. There I was surrounded by people I know and respect and I felt very much alone. This sparked complex emotions and one sentiment became prominent--alienation. When I emotionally shut down as I did on Saturday I think back to the early days of my paralysis and my subsequent intellectual awakening at Columbia University.  Once paralyzed, I immediately knew my social stature was significantly diminished. I had acquired a stigmatized identity. I may have been the same human being post paralysis but the way I was treated radically changed. It did not take long to learn that blatant disability based bigotry was going to be a daily part of my life. Today, we call what I experienced ableism. That word did not exist in 1978. Disability rights was in the incipient stages of development. Laws were being passed that protected my civil rights but they had minimal impact on my day to day life. I grew increasingly alienated from bipedal people. I was wary of typical others. I struggled greatly as I was continually shocked by the prejudice I encountered. I spent much of my time befuddled and confused. In those early years I often retreated to my door room, smoked pot and listened to the Sex Pistols and all sorts of punk music. The nihilism of God Save the Queen appealed greatly and the line "there's no future, no future, no future for you" resonated deeply. Two things saved me from a very dark future: first, Robert F. Murphy wrote the Body Silent and encouraged me every step of the way in graduate school. Second, I was exposed to Marxian theory--especially Marx's theory of alienation. The BBC has in a wonderfully British way explained alienation as follows in the video below:

My trip down memory lane and effort to deal with an intense feeling of alienation was helped by Stephen Kuusisto. At his consistently thought provoking blog,  Planet of the Blind, today Kuusisto wrote about his trip to the west coast via Delta airlines. As any person with a  disability can attest, the airline industry is capitalism's leader in disability based bias. All airlines are openly hostile to people with a disability. I cannot board a plane as a wheelchair user without being patted down by TSA agents. In short, I am frisked every time I fly. The so called pat down can range from gross disinterest and a cursory check of my body to an aggressive maximum security style effort to find whatever the TSA agent happens to be concerned about at that second in time.  There is no support to be found among my fellow downtrodden travelers. Indeed, passengers are usually as miserable and bigoted as airline employees. Read what Kuusisto wrote here: https://stephenkuusisto.com/2016/06/27/disability-airplanes-and-my-life-as-an-object/ In short two passengers categorically refused to sit next to him because he had his superbly well trained guide dog with him. Two passengers made a giant stink about being seated next to him and demanded to be seated elsewhere. Air line attendants were forced to handle the situation and Kuusisto wisely remained quiet. What he experienced was, to use his words, "raw prejudice". 

When I read Kuusisto's post I was instantly transported back to the first day I went to college. My brother Jim helped me move in. He had just graduated from Hofstra University and advised me to arrive early. He told me to get the bed near the window. By the time my roommate showed up all my stuff was packed up and we were just hanging out. In walks in my roommate and his father. There was a weird pause and my roommate said "I am not rooming with a cripple". With that statement, he turned around and walked out. Just like the bigots Kuusisto encountered on the airplane, my roommate's bigotry was managed. Imagine a different scenario. My roommate walked into a dorm room and stated "I will not room with a nigger". Imagine a person boarding a plane and stating the same thing. "I will not sit next to a nigger". The reaction would be radically different. Outrage would be quickly expressed. Prompt and fierce rejection of such bigotry would be the expected response. Yet when disability based prejudice, raw prejudice, exists the response is muted. The problem is managed. Somehow disability based prejudice is always different. Ableism is frowned upon but not addressed directly nor swiftly.  Disability based bigotry is rarely if ever recognized for what it is--a violation of a person's human rights. My human rights were violated the day I arrived on campus in 1978. Kuusisto's human rights were violated last week.

In retrospect, I realize now just how deeply I have been scarred by 38 years of disability based prejudice. On Saturday I was in a lovely apartment with friends and my son and yet the chaos of the move and a group of bipeds made me shrink away. I retreated into a self protective shell, accustom and expecting to be hurt, demeaned and belittled. I will struggle with my reaction, clearly this was a bad day. The bad day was further enhanced by a very bad fall out of my wheelchair in the heat of summer.  I have found solace however. I know to the marrow of my bones I am not alone. Millions of wheelchair users are out there everyday fighting the good fight. Kuusisto is out there and part of a guide dog team. Deaf people are out their with their own vibrant language and culture. The disability itself, whether physical or cognitive, does not matter. Disability based prejudice shares the same hateful roots. Indeed, prejudice, that is the study of prejudice, is littered with assumptions, generalizations, and cliches. It is for this reason that Elisabeth Young-Bruehl's book, The Anatomy of Prejudice, is on the top of my reading list. Young-Bruehl examines antisemitism, racism, sexism, and homophobia in an effort to expose their distinct fulness and similarities. It is my hope if ableism can be directly connected to other forms of prejudice real social progress can be made. I must dream of a better future for those who follow me in adapting to disability. I have taken, and will continue to be subjected to raw prejudice and do so in the hope that those cripples that follow do not experience what Kuusisto and I and so many others have endured. I wear my scars proudly for others.

Me Before You: Trouble with the Truth

The above video was posted to You Tube following the red carpet opening of the film Me Before You. The fierce reaction, a hornets nest of anger, has taken JoJo Moyes and all those involved with the film by surprise. Disability activists have staged protests from coast to coast. To say I am proud of my fellow cripples would be a massive understatement. Facebook, twitter, instagram, thunderclap, and more social media sites than I know exist are afire. Hundreds of people who write about disability on line in various traditional and nontraditional platforms have eloquently expressed their disdain for the film and book. This I anticipated. I read the book about two years ago. Last year I heard Me Before You was going to be made into a movie. I knew it was coming. I dreaded its release. I saw the trailer and cringed It was as bad as I expected.  What I did not expect was the mainstream media's perspective on disability rights protests. I am taken aback. Mainstream media outlets have respectfully discussed why people with a disability have reacted with anger and outrage. I need not provide links--there are too many. I never thought I would live long enough to see good articles from outlets such as the Washington Post, Guardian, Telegraph, Globe and Mail and many others. There are of course many dreadful articles in press. The comment sections are a battle ground as one would expect. Romance novel and film enthusiasts who love JoJo Moyes work are viciously nasty. Ableists, with the freedom anonymity brings, are over the top in spouting hatred. The message is clear--death is preferable to life with a disability and we cripples need to shut up or die. Our opposition to assisted suicide legislation is despised. Ableists think our opposition is born of baseless paranoia or we are so embittered that we want other people to suffer like us. Harsh if not hateful words are hurled our way.

What I find fascinating is the failed efforts to spin the book and the film by its makers. These efforts have been comically bad. Thea Sharrock, the film producer has argued there has been a "fundamental misunderstanding of what the message is" on the part of disability activists who have  had the audacity to protest and critique the film. Initially those involved with the film, Moyes, Sharrock, Sam Clafin, and Emilia Clarke told the media and people with a disability to read the book, see the movie.  Not surprisingly people with a disability had in fact read the book and seen the film. We hated both and were vocal about it. The next effort to dodge the outrage and increasing media criticism was to flat out lie. Moyes has repeatedly maintained she received a great deal of emails from people with various disabilities, even those who were quadriplegics, and they loved the book and film. These people remain silent and unidentified. Her tone was condescending. It was as though she were an adult and talked to we cripples like we were children.

The video above shows Moyes being confronted by Liz Carr stating she had never heard from anyone who thought the film implied people with a disability were better of dead than disabled. This is false. Dominick Evans contacted Moyes earlier this year via twitter and a blog post that was widely read. He expressed his grave concerns to Moyes directly. Evans recalls that he:

reached out to Jojo Moyes the author and screenwriter on Twitter. When I did so it was pretty horrible, because even though I was very respectful in what I was saying a lot of her fans jumped on me and were very rude and hateful to me. It got so bad that Jojo herself ended up apologizing for them. She asked to speak to me in DM and I shared my concerns with her for about twenty minutes, when we went back and forth discussing the book and the overall storyline.I was really disappointed when Jojo was confronted by activities at the UK premiere last week, because she told them this was the first time anyone had told her such grievances. She was unaware that I am friends with many of the protesters, and these comments were caught on a video recorded by Channel 4 in the UK. When a lot of my friends and fellow activists saw her downright lying, because they remembered my conversation with her back in February, people made me aware of her comments, and we all started calling her out for the lie. It is especially frustrating because when we spoke she said that she heard our concerns and was noting them for future projects. How can anyone believe that, when she won’t even be honest about the fact that we had a conversation in the first place?

When lying failed and was exposed those involved in the film began stating that the film was about one man, one character, and one person's individual choice. Frankly, I found this to be a ridiculous line of reasoning. The film is but one of many to celebrate the death of a disabled character. More to the point, the film does not exist in social isolation. A message is being sent: it is about one man, a fictional character, who finds his crippled existence so devoid of value that he fights to end his life. This man however is not your ordinary quadriplegic. He is unimaginably wealthy. He lives in a castle. He has access to a private jet. A gorgeous woman has fallen in love with him. Everyone knows this is not how your average quadriplegic lives life. Most quadriplegics are poor and many live in poverty. Some quadriplegics live in nursing homes. Most quadriplegics are unemployed. The symbolism here is overt. Quadriplegics can't do anything. They can't wipe their own ass. They can't get dressed. Some of them need life support. The horrors abound. Moyes and company create the one quadriplegic on earth that has it all and he wants to die.  If the character Will Traynor wants to die then surely your average quadriplegic must be eager to die and lives a nightmare like existence.

This is not about one man and one fictional character in a Hollywood tear jerker. A message is being sent and hordes of bipedal movie goers are getting the message: death is preferable to life with a  disability. Quadriplegia is the ultimate human horror story. A film analogy is apt here. In 1967 Spencer Tracy, Katherine Hepburn and Sidney Poitier starred in the film Guess Who's Coming to Diner. The film is a classic. It won two Academy Awards and addressed the controversial issue of interracial marriage. If we follow the logic of Sharrock, Guess Who's Coming to Dinner is about a fiancee who is introducing her future husband to her parents. It is just her story and her experience with her parents. The film has nothing to do with interracial marriage. This is laughable.

So why did Moyes film go off the rails? In light of the many critiques a few reasons emerge. First, a healthy dose of sexism comes into play. It is easy to dismiss romance novels. Chick lit is simply not subject to serious analysis. Second, a mass market mainstream Hollywood summer movie garners a lot of attention. Millions of dollars are at stake. The production cost of the film was $20 million. Tear jerkers draw large audiences and the film has already made money. In its opening weekend the film has earned $27 million. Killing disabled characters in films sells tickets. Third, Moyes never bothered to talk to any people with a disability. Dominick Evans noted: "a non-disabled person wrote this story. A non-disabled person directed this film. A non-disabled actor portrayed the disabled role". No movie about a member of a minority group overcoming gross civil rights violations would be made without an actor from that minority group. I recently saw Race, the biopic about Jesse Owens. A white actor could never be considered. The sole exception here is Hollywood is quite content to have non disabled actors play characters who are disabled. Fourth, the character Will Traynor, who Moyes says was inspired by the case of Daniel James, is more similar to Christopher Reeve than James. American audiences will recall Reeve and have no idea who Daniel James was. Fifth, money is an insulator. Like Reeve, Moyes did not make any effort to interact with other people with a disability. Reeve wanted to be cured. His post injury life consisted of nothing else. Moyes was similarly focused and insulated. She did no research. She worked within a medical model of disability. All Moyes saw was pathology and imagined what quadriplegic life entailed. Moyes is ever so typical of what people see and think when an obvious disability such as quadriplegia is subject of discussion. She sees what cannot be done. In contrast when I see a quadriplegic I wonder about the level of injury and what they can do. As I age I am also a little envious. Power wheelchairs today are powerful, can go fast and far. More than once crossing campus at Syracuse University and heading directly uphill I think a power chair is enviable technology. Oh what people miss--the very humanity of people using what I consider to be cool technology.

Me Before... Who? A Guest Post by Lynn Hsu

A few years ago, I spent a memorable evening with my friend Scott Rains. Although Scott and I had only met online before that day, he was kind enough to let me tag along with him to the 2013 Superfest Disability Film Festival in San Francisco, an hour’s drive north from San Jose. The event that year took the form of a mock awards ceremony called The Dissies, wherein satirical honors (to wit, gold bobbleheads of Timmy from South Park) were bestowed upon the most egregious portrayals of disability tropes in the history of film.  (If you missed out, there is video posted here: https://youtu.be/epE67x5Ns_w  - Scott’s dramatic turn as Dr. Strangelove accepting his “Dissie” appears at 1:02:50.) The film clips and speeches were hilarious, and the joyfully defiant solidarity in the room was palpable. Scott and I had a great conversation on the way home. He remarked on how alienating it can feel to sit in a movie theater and feel like the only one who’s bothered by the message on the screen, and in contrast how empowering it had felt to sit with hundreds of like-minded members of the disability community and mock the foolishness of those demeaning messages. I am so grateful to have taken part in that day.

Today, I sit looking at the juxtaposition of two upcoming events on my Google Calendar.  This weekend marks the widely-anticipated premier of a movie that deserves a “Dissies” event all its own: the film adaptation of the 2012 novel, Me Before You.  Just days later, there is a memorial service for Scott. I will be attending only one of these events, and it won’t be the movie. As the disability community reacts, with understandable distress, to a film trailer wherein a quadriplegic protagonist tells the woman he loves, “I don't want you to miss out on the things someone else could give you”… I think of Scott and wish he were here to scoff this foolishness with me.  How we would have rolled our eyes at the irony of using a #LiveBoldly hashtag to promote a movie about a guy who is determined to die! But Scott is gone, and Me Before You is just beginning its life as a cultural phenomenon. Nobody ever said it was a just world.

Scott became a quadriplegic in 1972, when he was seventeen. Adapting and moving forward, he went on to study abroad, earn a PhD, marry, teach, serve as a pastor, work as a consultant, travel the world, speak and blog to a wide audience, and revolutionize the movement of accessible tourism. Scott epitomized “living boldly.” He did so, not to defy expectations or to prove a point, but out of his innate joy and curiosity. He loved exploring, taking photographs, befriending and mentoring others, and building alliances to create positive change in the world. He was one of those people who make everyone feel like they’re his best friend. Scott was diagnosed with an inoperable brain tumor on the last day of 2014. Even when he communicated his prognosis clearly, people obviously couldn’t believe that this vibrant and expansive man wasn’t going to get better. The last time I saw him, we laughed about the social media response to his photos. Any time an old picture of a youthful and energetic Scott appeared, it would be met with a flood of celebratory comments about how much better he was looking, and how he’d be back on the road in no time. He tolerated the wishful thinking with good humor. Scott wasn’t getting better, and he knew it; but he outlived his initial prognosis and made the very most of the time he had. He died at home a month ago, peacefully, with his wife by his side. He sought neither to hasten his death nor to turn his last months into a pyrrhic battle; rather, he weighed his options, lived his values, and gave as much time and energy as he could to those he loved. He set an example in death as he did in life.

                  I’m not trying to idealize Scott. I didn’t know him well enough to know his flaws and struggles, but that doesn’t mean he didn’t have them.  People are complicated, irrespective of disability; and the tendency to perceive people with disabilities as either mythically positive or stereotypically bitter is one of the many ways in which we able-bodied folk make their lives more difficult. I’ve had dozens of friends and acquaintances over the years who have lived with quadriplegia, and shockingly enough, they’re just… people. My best quadriplegic friend helped me to rejoin the human race when I was at my most defeated, and unquestionably made me a better person by being in my life.  My worst quadriplegic friend ended our friendship without warning and vented his contempt to others rather than bring his issues to me as I trusted a friend to do. Funnily enough, those best and worst friends were the same guy. Like I said, people are complicated, and life is just like that sometimes. We’re all a mess in one way or another, and disabled people are in no way obliged to be any less messy and contradictory than anyone else. It isn’t their job to embody other people’s narratives, whether that means personifying somebody’s idea of tragedy, or inhabiting somebody’s pedestal of triumph and “inspiration.” People are entitled to simply live and make the most of the hand they’re dealt, without having other people second-guess the value of their lives.  They are entitled to write their own messy, complicated stories.  There are those who argue that Me Before You illustrates this principle of free choice and autonomy; but they are overlooking the fact that the character making the choices was penned by an able-bodied author who, by her own admission, had never met a real person with quadriplegia before she wrote the novel.

Jojo Moyes is a British author who was moved to create Will Traynor, the disabled protagonist of Me Before You, because she was troubled and intrigued by the real-life story of Daniel James, the young rugby player who chose assisted suicide at Dignitas following a disabling injury. Moyes’ impulse to explore the emotional terrain of James’ decision in a fictional context was not, in itself, a bad thing.  “If you have a story that won’t leave the front of your head, that’s what you need to write about,” she has explained. She is a gifted writer and a compassionate person, but she botched this project, and she didn’t put herself in a position to be reality-checked by anyone who could have shown her where she was going wrong.

The problem is that Moyes conflated two fundamentally incompatible goals as she crafted her novel.  The first was to ask, given a person in despair following a loss of physical ability, what could make that person’s life worth living again? The second was to ask, how could Daniel James have chosen to die as he did, and have convinced his family to support and facilitate that choice? Moyes failed to realize that the same story could not possibly answer both questions. She invented the character of Louisa Clark – a love interest for Will who has no counterpart in the real story of Daniel James – to drive the quest to give Will’s life new meaning. Leaving aside the fact that we all have to find meaning for ourselves, Moyes set Lou’s mission up to fail, because Will’s eventual decision was a foregone conclusion.

I read Me Before You in 2013. I’m not much for romance novels, and the main reason I didn’t say a lot about the book at the time was that I was embarrassed to have read it at all. But having seen the plot summary, and the fact that it had already sold over a million copies, I needed to know what Moyes was putting out there. It was… an interesting read.  I liked the first part of the book more than I expected to. Moyes is an engaging and witty writer, and she deftly captures the alienation that ignorance and fear about disability can create. She begins to develop the characters of Louisa and Will, and sets the stage for them to find genuine love together.  And then…? The story derails. About halfway through the book, Moyes seems to realize that if she continues with authentic character development and the pursuit of a nuanced answer to her first question, she’ll never find an answer to her second question, because Will Traynor will adapt and grow and find love and meaning in his life, as real people with disabling injuries do.  So, she shifts gears.  Will stops evolving, digs in his heels, and commits to the path of self-annihilation by assisted suicide. Louisa, meanwhile, mirrors his dogmatism with her frantic yet repetitive campaign to “make Will happy.” She plans lavish adventures and lobbies for him to live as if she’s been appointed Director of Marketing for Planet Earth. The story becomes inauthentic, dull, and downright annoying. Ultimately, the whole so-called “romance” amounts to nothing, Will is euthanized, and Lou is left with a big inheritance and a tear-jerking farewell letter about - you guessed it - “living boldly.” 

Did Moyes mean to assert that life with a disability cannot be worth living? Of course not, she protests -  Will is just one individual. True enough, but he is the only individual Moyes has crafted as a vehicle for exploring this question. She throws in a few nominal quads who choose to live, faceless placeholders that Lou meets in an online support group, but they are never developed in a way that portrays a real person finding real value in life. They’re just proxies for choosing to live, and ambivalent proxies at that. The bottom line is that Moyes abandons her question about finding reasons to live, in favor of her compulsion to explore why one man chose to die.  It was never possible to do justice to both questions, and Moyes did far more harm by posing an important question she did not intend to answer than if she had never asked it in the first place.

The widespread success of this novel was troubling enough, but now it’s 2016, and the book has spawned a movie. When filmmakers are tasked with condensing a story whose audiobook clocked in at over 14 hours into a two hour film, they will inevitably mine the collective subconscious for shortcuts. Movies use familiar imagery and idiom to evoke culturally ingrained ideas and stereotypes, to augment the story they actually have time to tell. For a movie like Me Before You, that means leveraging what audiences already believe about disability to advance the story line. This cannot end well. The trailer alone was far more upsetting to me than anything I read in the book. A few weeks from now, millions of people will have a whole new, detailed, fictional experience in their heads, to validate their misconceptions about life with a disability. And where is the counterbalancing signal-boost for all of the real disabled people who live fulfilling, meaningful lives? Where is the publicity for the research that shows that quadriplegics, on the whole, rate their quality of life just as highly as anyone else… but that their doctors vastly underestimate those same ratings? Well, here is it, if anyone is interested: http://www.theatlantic.com/health/archive/2013/12/reconciling-life-and-quadriplegia/281821/

I won’t be going to watch the latest albatross of tragic stereotyping get fastened around the necks of people I love and respect.  I will be going to a memorial service, if I can even get a seat in what I’m sure will be packed house.  I will be gathering with others whose understanding of “living boldly” was enhanced by the privilege of knowing our friend Scott. I will be wishing that all of those moviegoers were getting a chance to know a real guy with a huge heart and a smile to match – a man who loved his life, loved his family and friends, and loved the world that he savored every opportunity to explore. I will be wishing that all those people who will be wiping away tears in dark movie theaters could be mourning for the real Scott Rains rather than for the imaginary Will Traynor. Maybe somebody will make that movie someday.

The Reeve Foundation Rears its Ugly Head with Me Before You Press Release

My dislike for the Reeve Foundation has no limits. Christopher Reeve never understood disability. He carefully separated himself from other people with a disability. To a degree I get this. He used his wealth and fame to shield himself from ableist bigotry. He swallowed the medical model of disability and believed himself to be different from all the other people who broke their neck. I am going to walk he said. People fawned over him as brave and noble. He was not brave or noble. He was simply lucky to have money and deep Hollywood connections. This empowered him to search for a cure to spinal cord injury. He was in short a medical industry insider and created a foundation that pays lip service to quality of life issues. They exist for one reason--cure of spinal cord injury. They rely on well worn stereotypes associated with disability to raise money. Victorian era values are successfully used to raise millions. The larger destruction the Reeve Foundation causes is not even thought of.

My dislike for the Reeve Foundation is fueled from time to time. Today was one of those days. The author of Me Before You, JoJo Moyes, has repeatedly stated that people with a disability, including quadriplegics loved her book. She also stated that the Reeve Foundation loved her book.  Moyes did not identify what staff member of the Reeve Foundation loved her book but she is certain they liked it. Today the Reeve Foundation released the following wishy washy non statement.

Me Before You touches on poignant themes about what it is like to both live with a spinal cord injury and care for someone as a family member and caregiver. However, while Jojo Moyes’ book is defined as fiction, the character of Will Traynor is very real to 5.6 million Americans living with paralysis. At the Reeve Foundation, our mission includes enhancing quality of life, independence and health for all individuals living with paralysis. The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death. Disability does not sideline or disqualify someone from living a full and active life. Everyone living with paralysis can live boldly.

Me before you is not poignant. It is a romance novel that used disability as a plot device. It relied on one of the oldest and most destructive stereotypes associated with living with a significant disability--the assumption that death is preferable to disability. I know this because at least once or twice a year a stranger says tells me they would prefer death to using a wheelchair. Strangers have been saying this to me since I was 18 years old. As for the book addressing themes associated with life post spinal cord injury, technically this is correct. But Will, unlike 99% of people with a spinal cord injury live on the edge of poverty. Unemployment is rampant, access to housing and mass transportation remains extremely difficult. Ableism has impacted every part of American society.

The Reeve Foundation is ever so coy here. "Everyone living with paralysis can live boldy" . Give me a break. Borrowing the tag line from the movie here is just offensive. The Reeve Foundation taps into the myth that people who are paralyzed overwhelming desire is to walk again. Sorry, but no. The vast majority of people I know simply want to adapt to disability and move on with life. This is not easy because ableism is deeply woven into the the fabric of society. More to the point, the Reeve Foundation is part of the profit driven rehabilitation industry that sells a false bill of goods to newly minted paralyzed people. Walking is the one and only means of navigating the world. Rehabilitation facilities are now a brand that sell rehabilitation services. For example, the ReWalk is used at many rehabilitation centers. The men and women who use the ReWalk are "test pilots". Yes, test pilots. Think Maverick. Corporations rely on the fact that most people think using a wheelchair is bad or some sort of tragedy. Walking is ideal. You must try to walk. I get it. The human body was not meant to be paralyzed. But paralyzed people abound. Without a wheelchair millions of people could not navigate the world. I know many people that use a wheelchair who love their wheelchair just like me. Yes, I love my wheelchair.

The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death. Really? This is essentially the entire point of Me Before You--the book and film. The young, wealthy Will wants to die despite the fact he is extremely wealthy and Louisa loves him. Will is rich and loved and wants to die. The message here is not exactly subtle. Will thinks life with a disability is a fate worse than death. Why else would he want to die? Perhaps he lives a twilight zone existence--great wealth is bad. Having a beautiful woman love you is terrible.

The only good thing I can say about the film is that it has created a hornet's nest like reaction. We people who embrace disability rights are angry. Social media has exploded: Twitter is abuzz as is Face Book. Instagram is afire as is Storify. My concern is this flash point of criticism will be forgotten next week. The mainstream media will move on to the latest news flash. Meanwhile millions of people will go to the theater and many tears will be shed. Tears that reinforce ableist beliefs that are wildly wrong. Tears that make me realize the ADA has no social mandate. Tears that reinforce the idea people with a disability have "special needs" and require "special transportation" and "special education". There is nothing special about me or my fellow cripples. We are just people. People that value our existence. Why I even value the life of those who are bipedal. Indeed, you guys are ever so special to me.

Too Much Sympathy? Bonnie Liltz Speculation

One of the great benefits of writing blog entries is the feedback I get from readers. This is a double edged sword though. I get many emails and insightful comments from those with a similar philosophy of life. I find this gratifying and without question supportive comments lessen my  feeling of isolation. On the other hand I receive a healthy dose of stinging criticism some of which is blatant hate email. This bothers me. I read the stinging criticism and carefully moderate the comment section. I do my best to be fair to all those that write to me. I am willing to engage others who hold contrary views because this is a great way to learn. Another benefit of the comments section is the links to essays and news stories readers send me.

Last night a reader sent me a link to a news story out of Chicago. Two mainstream news outlets reported that Bonnie Liltz was admitted to the hospital. She was in prison a total of four days. Liltz's lawyer, Thomas Glasgow, told reporters he knew this would happen. I knew this would happen too. Her hospitalization could be a by product of the overwhelming sympathy she has received from across the nation. I do not know if this factually correct. I am speculating here. Based on the actions of her lawyer before and after Liltz was convicted of murdering her daughter Courtney it was made very clear Liltz's body had been "ravaged by cancer". Again, I have no idea how ill Liltz is. Based on news reports she was admitted to Cermak Hospital, the medical facility that serves the inmate population, and transferred again to Stroger Hospital. This was set in motion by her lawyer who filed an emergency motion requesting Liltz bail be reinstated or for Liltz to remain in Stroger Hospital. Liltz will remain at Stroger Hospital until a June 7 hearing.

Glasgow is doing his job. He wants to keep his client out of jail. Glasgow stated that Liltz likely got an infection in jail. Her infection is related to her ostomy pouch. Liltz was admitted to the hospital for dehydration and further testing. I am well aware that dehydration can be very serious. I know this because I live on the edge of dehydration on a regular basis. Accessible bathrooms remain in short supply. Liltz may be very sick. She may have a severe infection. She has the right to privacy as does any sick person in the nation. Yet there is level of legal gamesmanship that may be involved in her hospitalization. Is her lawyer using an immediate illness to set up up a compassionate release request? I am no legal expert but this is a logical next step given the overwhelming support she has received. I have no idea how the compassionate release process unfolds. I did spend some time on various websites and have no idea what to make of compassionate release requests. A few years ago NPR did a series of stories in which terminally ill inmates died in prison. Some of the stories were heart breaking. I also do not know how successful compassionate release requests are. Based on a google search and an hour of reading these requests seem to be a polarizing issue within the field of criminal justice.

I do not typically engage in speculation. Yet there is something about the Bonnie Liltz case that is lingering in my mind. Maybe it is because of Robert Latimer who was convicted or murdering his daughter Tracy. Years ago this was a huge case in Canada and it was hotly debated at a national level. Maybe it is because of another case in Canada this year. In March Cindy Ali was sentenced to life in prison with no chance of parole for murdering her daughter. Like Courtney Liltz and Tracy Latimer, Cynara Ali was severely disabled. Unlike, Liltz, Ali tried to cover up her murder. Regardless, this pattern of parental murder is astounding. How can we let this happen? As I wrote before, murder is murder. This appears to not be the case when a parent murders their severely disabled child. I can't seem to let this go. It is why I take the ASAN Disability Day of Mourning seriously. Link: http://autisticadvocacy.org/2016/02/disability-day-of-mourning-vigil-sites/ In the past five years over one hundred and eighty parents have murdered their disabled children. Every March 1st vigils are held nation wide. Such vigils get virtually no publicity. That's okay with me. I prefer to mourn in private. March 1 of 2017 is already on my calendar. I hope readers will put it on your schedule as well.