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Friday, May 27, 2016

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.

Wednesday, May 25, 2016

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: 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.

Sunday, May 22, 2016

A Second Class Existence: Me Before You Gets It All Wrong

Daniel James died in 2008 at the age of 23. I vividly recall the circumstances of his death because they truly shocked me. James was a gifted athlete who aspired to play professional rugby in the United Kingdom. James did not become a professional athlete nor did he celebrate his 24th birthday. James had an accident in March 2007 and experienced a spinal cord injury. He was hospitalized from March to November. His injury was complete at C6/7. Once medically stable he received rehabilitation at the National Spinal Centre at Stoke Mandeville. In November he returned home and lived with his parents. Adjusting to his injury and life as a quadriplegic did not go well. He attempted suicide more than once. He was very clear that he wanted to die. In February 2008 he contacted Dignitas and wrote that "my primary reason I wish your help is simply that I want to die, and due to my disability I am unable to make this happen". On September 12, 2008 a physician who worked at Dignitas gave James a lethal dose of medication. Only 18 months after his injury James was dead. I was shocked by this timeline. I was shocked parents would agree to accompany their 23 year old son to Switzerland to die. I was shocked the Crown Prosecution Service concluded that prosecution of James parents would not be in the best interest of the public. Link:

Like the Bonnie Liltz case I have written about this week, James parents received an avalanche of social support. The very idea of prosecuting James parents was believed to be a gross miscarriage of justice. Editorials were written praising James parents decision to let their son die. They were characterized as astoundingly selfless for not only allowing their son to die but to accompany him was a testament of their love. James parents statements in the press fed off the idea that life post spinal cord injury has no value. They maintained their son simply could not accept life as a "second class existence". They wrote his death was a "welcome relief from the prison he felt his body had become and the day to day fear and loathing of his miserable existence." Death was clearly the only reasonable choice. They further noted: "He couldn't walk. He had no hand function. He was in pain in all his fingers. He was incontinent, suffered spasms in his legs and upper body and needed 24 hour care. His only option was to starve to death.

James death was front page news in Britain and became part of the discussion about whether assisted suicide should be made legal in Britain. At the time another Britain, Libby Purves, a well known broadcaster and novelist, was writing editorials and advocating assisted suicide should be made legal. In one editorial, "It's Time for a Clear Policy on Euthanasia" she wrote an unintended side effect of the disability rights vocabulary was that "It might blind us to the utter visceral awfulness of confronting a major disability, especially when young [An obvious reference to James]. As civilized people we do not allow ourselves to flinch at a half wrecked body in a wheelchair, yet the flinch and the fear are still there inside".

The flinch and fear is still there.

I have read these words many times. Do people really flinch when they see me? Do my students flinch when I enter a classroom? Do my fellow scholars flinch when I enter a room? Do family and friends flinch when we meet? I would contend the only people who flinch are those with a typical body who deeply fear disability. Apparently these people abound. The fact they don't know a person with an actual disability empowers them to freely imagine what a rotten existence we crippled people are forced to live. For if we people with a disability were truly brave and strong we would kill ourselves and thereby end our misery. Those of us who live, learn and adapt to a disability are an inconvenient reminder of all that can go wrong in life. Thus we are exactly what James felt--a second class existence. We are ever so special and only because civilized others have compassion do we people with a disability exist. The problem is we people with a disability have a radically different view. We value our lives. We maintain the same dreams and goals as typical others do. We want to have a family. We go to school. We get married. We get divorced. We do all this in the face of deeply ingrained ableism. Our civil rights are routinely violated. We encounter needless obstacles in all walks of life. Housing, unemployment and poverty all go hand in hand when living a rich and full life with a disability. Worst of all is the utter disrespect and unwillingness to listen. Disability is terrible. This is a given. Disability is individualized-- it is always individualized. It is individualized because our words and our lives are unwanted. It does not matter what we say because our words are dismissed. We cannot not be happy and content. Hence James parents can say and believe the following:

Whilst not everyone in Dan's situation would find it as unbearable as Dan, what right does any human being have to tell any other that they have to live such a life, filled with terror, discomfort and indignity, what right does one person who chooses to live with a particular illness or disability have to tell another that they should have to.

Well said. There is only one problem--this is contingent upon the individualization of disability. We people with a disability are distinct minority group. We have civil rights. We have human rights. The Americans with Disability Act protects my civil rights--the law is civil rights legislation. The rights of people with a disability are also protected abroad. The UN has the Convention on the Rights of Persons with Disabilities. There is no doubt the letter of the law is on the side of people with a disability. Despite 40 years of progressive legislation in the United States, disability based discrimination remains wide spread. We people with a disability are often rendered silent, our words quickly dismissed. I can state with certainty that I do not live in terror. I live a dignified life. I am quite content and happy to be alive. That is the gospel truth.

I have been thinking a lot about Daniel James in recent weeks. In June a film is being released that I know will be dreadful. James was the inspiration for the book and film Me Before You. A close friend deemed it "Titanic meets Million Dollar Baby". I would characterize it as another film in a long line of what I call the disability snuff genre. If that phrase upsets people good. I want you to be as upset as I am. The representation of men with a high level spinal cord injury is a worn out trope. Death is preferable to life as a high level quad. The higher the level of injury the more likely a character is cheered to his death. Paraplegics can zip around in sporty wheelchairs, play sports, participate in the Paralympics but we remain tortured souls but rarely are we the inspirational figures for death. This domain is reserved for quadriplegics. Think Million Dollar Baby, Whose Life is it Anyway, Sea Inside, The Switch, etc. Variations on this theme exist but its a good bet if an actor is portraying a quadriplegic the character is almost certainly going to die. The death in most cases is the highlight of the film. Me Before You is simply the latest film that sends a simplistic message that typical people seem drawn to like a moth to a flame. In a Good Reads interview the author, Jojo Moyes, was asked what inspired her book and subsequent film.

This young rugby player in England, who was 23 years old, persuaded his parents to take him to Dignitas after he'd spent several years as a quadriplegic following a rugby accident. I was so shocked by this story, because I couldn't believe a parent would take their own child to this place. I guess I was quite judgmental as well. The more I read up on it, the more I realized that these parents were in an impossible situation because this young man had expressed a determination to fulfill his wish by any means. Being physical his whole life, some people are just going to refuse to adapt. They're just not going to do it. It became harder for me to say "Well this is how it should be". I think as human beings we naturally look for black and white. We look for resolution because its uncomfortable to live with dissidence in our brain.

Moyes stated she did not know any quadriplegics nor did she interview a paralyzed person. She did speak with a family member who "suffers" from a progressive disease. She stated she went to a rehabilitation center. Moyes was asked would she recommend the book to a person who is a quadriplegic. Her answer made me laugh and grown at the same time. She stated that when she was in the United States the Christopher Reeve Foundation loved the book. "They had read the book and wanted to support it in any way possible". She went on to note that she she received thousands of emails, many from quadriplegics who said "Thank you for reflecting our lives and also for making a quadriplegic male a romantic hero who is sexy!"

The obliviousness here is nothing short of stunning even for a quadriplegic wants to die snuff film. The main character, Will Trayner, is never given a voice. He is a mere foil for Louisa Clark. In a New York Times review of the book the reviewer put it succinctly; "Lou has never fully lived: Will has, but no longer can... He had scaled rock faces at Yosemite, swum in volcanic springs in Iceland, sampled warm croissants in the Marais and had his pick of glamorous, leggy girlfriends. After the accident, he can't walk, can't feed himself, can't have sex. The only power he believes he retains is the power to end his life; and, as a man of action, he wants to exercise that power".

I am no fan of romance novels but this is a first. Will is the first asexual romantic hero who wields his power to die. It is a given, he will die because, well, that is what all people who are not quadriplegics believe. The only quadriplegics that want to live are asexual, bitter, angry people who lash out at all the people foolish enough to engage them. Even when a quadriplegic like Will has it all--he is rich beyond belief, lives a life of luxury and can do pretty much whatever he wants--still chooses to die. Out of the goodness of his soul he will not allow himself to ruin Louisa's life hence after his death he wills her his money. Only Hollywood could come up with such a story line that is so grossly convoluted and devoid of reality.

Predictably, there are more than a few angry people with a disability who deeply object to the book and film. If the film is a hit, and I believe it will be, there is no doubt organizations such as Compassion and Choices will exploit its popularity to help pass assisted suicide legislation. Multiple people with a disability have already weighed in with scathing words. I doubt their words will resonate beyond the disability rights community but they reinforce I am not alone. Here are a few links:

Sane Clifton:

Aestas Book Blog:

Dominick Evans:

Pretentious Best Friend:

Crippled Scholar:

Crippled Sholar wrote the most detailed essay to date. All the critiques note that it is a given any person who is a quadriplegic would prefer to die. There is no need to even discuss why a quadriplegic would prefer to die. That is the unquestioned premise. Much drama is manufactured to reinforce this assumption. Will is essentially used as a prop to reinforce what non disabled people know about disability. Will is the perfect dignified puppet. Strong, silent, and asexual. Pretentious Best Friend wrote:

the film blatantly uses Will’s disability as a shorthand for chastity fetishism. Twilight and Fifty Shades of Grey have popularized chastity fetishism by substituting sexual attraction with attraction to danger, which leads to problematic romanticism of physical and emotional abuse. Me Before You takes the opposite tactic, by making Will so nonthreatening that he can’t even be conceived of as a sexual being. His relationship with Louisa has no chance of sexual culmination (at least according to the logic of the film), so Louisa is free of the usual pressures placed upon women in relationships and therefore can pursue Will without being concerned that she will be expected to consummate their love. This is exemplified by the fact that the film’s most romantic scenes (and a few comic ones) are of Louisa acting as a caretaker, and that Louisa doesn’t even bother to break up with her current monogamous boyfriend as she spends more and more time with Will. Again, I understand the appeal of a platonic, nonsexualized romance, but it cannot come at the expense of the dignity to either party of the relationship, and Will’s portrayal deprives dignity to an entire class of disabled persons.

My outrage is shared by all those I know who have read the book and seen the trailer for the upcoming film. The potential damage this film can cause is significant. I recall going to the movie theatre to see Million Dollar Baby. At the end of the film when Maggie is killed the entire audience stood up and cheered. I was stunned. As bipeds exited the theatre they would not look me in the eye. I was angry and wanted the bipeds who cheered Maggie's death to be as uncomfortable as I was. These sort of films are inherently destructive in large part because people with no knowledge of disability believe and absorb what they see in films. Moyes absorbed the case of Daniel James from an ableist perspective. She was willfully ignorant. Next month theatre goers are going to be entertained by the death of a quadriplegic man and the walk away message is simple--death is preferable to life as a quadriplegic. This is so wildly wrong I have no idea how to undermine this line of reasoning. Dominic Evans expressed the same sentiment:

The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true. I believe that if Hollywood showed more disabled actors, particularly wheelchair users, who we never see, and the stories were more reflective of the disabled experience, then people would believe disabled lives were worth living. There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is. We cannot change the narrative about disability when these kinds of films continued to be made.
I sincerely hope I am wrong about this film. Perhaps it will be a box office bust. Maybe it will fly in and out of theaters like most films do so these days. This film is a modern day minstrel show. White actors in black face. In this case, a non disabled actor playing a disabled man, a non disabled writer writing about disability and a non disabled producer producing a film about a man with a disability. For me the take away message can be summed up in a well known slogan: Nothing about us without us. Are you listening Hollywood?