Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
Search This Blog
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: http://www.cps.gov.uk/news/articles/death_by_suicide_of_daniel_james/
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: https://shaneclifton.com/2016/02/05/why-i-hate-jojo-moyes-me-before-you/
Aestas Book Blog: http://aestasbookblog.com/me-before-you-review/
Dominick Evans: http://www.dominickevans.com/2016/02/hollywood-promotes-the-idea-it-is-better-to-be-dead-than-disabled/
Pretentious Best Friend: http://pretentiousbestfriend.blogspot.com/2016/05/me-before-you-fetishization-of.html
Crippled Scholar: https://crippledscholar.wordpress.com/2016/05/21/why-are-you-complaining-some-people-actually-feel-that-way-a-critique-of-me-before-you/
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?
Posted by william Peace at 5:32 PM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Subscribe to: Post Comments (Atom)
Excellent article, and I'm honored that you included a passage from my review in it.
Your article is important to the debate. I encourage you to rewrite the article into a shorter format and get it published in a major newspaper. Sadly the disabily perspective is rarely seen in the mainstream media.
Alex, I did exactly what you suggested. Six mainstream papers turned me down. A disability rights perspective is just not welcomed in mainstream journalism.
Pretentious Best Friend, I really liked your essay. I never cease to be amazed that people with a disability are continually portrayed as asexual. You nailed this perfectly.
Bill when I see you I do not flinch I feel so happy I want to hug you because you are a great person and a great friend. Kate Ryan
I wanted to write to you and say how much i love reading your blog
I also have a disability though not a spinal cord injury i have been bedridden for nearly 4 years and i do not have a lot of function so i can appreciate how the misinterpreted information about living with a disability in films is no good and though i haven't seem any of the films i think its disgraceful to think that dying is better for every person with a disability
I think that if you can learn to adapt to your disability anything is possible!
I do all sorts of activities without leaving my bed and though its difficult both mentally emotionally and physically i have managed i wasx a wheelchair user for 4 years prior to being bedridden and all your writing about the built environment and how inaccessible it is i definitely agree
I am from Australia so we have many of the same problems as the US does
I am also writing a book
I love reading your blog from erin
In all seriousness could someone, anyone, please take a few moments and provide enlightenment as to the standard of measurement used to define "Able"? Moreover does "Able" even exist?
As a human being who has practiced the art of nursing over many years, I have witnessed varied conditions and states of health but have yet to come across any human being not lesser abled in some area of health and well-being. Moreover in some situations what has been considered a "lesser ability" in one context has proved a "greater ability" in another.
After reflection upon this thing supposed to exist named "able" that is broadcast in such a deceptively narrow yet ethereal manner, if asked I would choose to define "able" as not "doing human" but "being human" and demonstrated by independent thought, regardless of IQ. This would exclude the majority, but never upon permanence of death.
This movie is simply an insult to all disabled people. In my humble crippled opinion, people have the right to ask for Suicide Assistance is their suffering is unbearable. But this doesn't automatically mean that being disabled is too painful to live. I have SMA, as does my younger brother, and despite the fact that we do need help with ADLs, we both live fulfilling lives and have loving & intimate relationships with able bodied people. My parents wouldn't ever help us kill ourselves.
I'm so sick of people's disrespect of my life just because I use a wheelchair. I do have a lot to offer the world, as other disabled people do, but we don't get any recognition.
I used to teach Psychology at a community College about 3 years ago and my students helped me, respected me, loved me and saw me for ME! I loved teaching!
Now I volunteer at a hospice program for Veterans at a local VA Hospital.
As long as I live, wheelchair and pain, I will continue to give of myself to others and the world.
I will be remembered for more than my disability! ✌🏻️
By the way, I'm Polish. We are a strong and smart people! We don't give up on ourselves or others! They'll have to beat me with a stick to get rid of me! 😉✌🏻️😉
The only movie (actually two I can recall is The Other Side of the Mountain about the life of Jill Kinmont.
The headline "Bad Cripple" said it so succinctly, so powerfully. Your life is fuller than most 'abled' people. Only someone like you could do it. I'm a coward.
"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..."
How can they? :( I am crying :(
Ann. I am far from alone. For most of human evolution we humans adapt. I have adapted as have millions of others in the same situation.
Ann, I have no idea why people that say that to me. I suppose they assume my life has no value.
SDSali, Other Side of the Mountain was a decent film. The sequel was dreadful. Far more bad movies than good movies on disability exist.
I'm a quad - C3/C4 A1. Been wanting to die since the day I woke up with my injury, except for people telling me to wait because I might regain function… I didn't. I did however get strong enough to breathe without a vent, just barely, but enough so that I can't even request my vent be removed. Like James, I led an extremely active lifestyle. This existence of immobility and dependence is utter hell to ME. You use a whole lot of "we" statements in your essay, but there are a whole lot of people you don't speak for at all.
It is very difficult to be cordial in this message because I blame you, people like you, and religion for depriving me of a peaceful exit from what I consider a hellish existence. You may enjoy life, I do not. In order to end my life I am left with starvation as the only option. Sure, I can fly clear across the planet to Switzerland, but the US may not be as forgiving as the UK to those that accompany me. I will not drag anyone down with me. I praise movies like Million Dollar Baby and Me Before You for putting MY point of view out there. I can only wish it's enough to change legislation so that in the future people who feel as I do don't have to spend years being forced to try and adapt.
Eddie, I find your comment ever so sad. Anyone telling you to remain alive post injury to await regaining function is no friend but an ableist bigot. Getting off a vent is huge accomplishment. For that alone, I applaud you. I have no idea where you live or how long you have been paralyzed. I am nearing 40 years post paralysis and have never met a person who shares your dismal views. Yet I know people such as yourself exist and a small number of people have chosen to die. I find this unfathomable. Why not adapt? As a species we are remarkably adaptable. Why do you refuse to adapt and thrive? Of course it is hard to remake a life with a disability but the is exactly what the vast majority of people do. Rather than frame one's life as a hellish existence, ask the all important why? Even the most severely disabled person can have a measure of situated autonomy. So I hope you will consider asking why is your life a hellish existence? The answer is not to be found in your disability but a society all too willing to deny basic social and practical supports.
How I am too blame is simply way off base. The films you name are nothing more than ableist propaganda. Please delve into the rich history of disability based oppression that is a few clicks away. There are many with comparable injuries that have led rich and full lives with Ed Roberts being the most well known. Please adapt. I implore you to adapt. Do not be misled. Life is rich and wonderful with and without a disability. Hence my use of we. We are one in the same. We are an oppressed minority. I wish you could see that. From this perspective anything is possible.
Post a Comment