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.

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?

Coastal Storm Awareness

For most of my life when I think about what would happen to me in the event of natural disaster, plane crash, train wreck etc. one thing springs to mind: I am screwed. When I fly the flight crew will once in a while say something to me that "In the event of an emergency landing..." I typically give them a snarky look as we both know the odds of surviving an emergency landing are remote. The odds of me, a wheelchair user, surviving an emergency are even more remote. Some how I doubt flight crew or my fellow passengers will run into a burning plane to carry me out. Not a chance this will happen.

Today I believe my chances of surviving a natural disaster are increasing by the day. I can state this with some authority as I was lucky enough to be part of a group of scholars who worked on a Sea Grant Coastal Storm Awareness Program. The project that I specifically worked on concerned Hurricane  Sandy and why people in the NYC area weathered in place or rode out the storm. Almost all people with a disability stated the same thing: they had no where to go. The City of New York was sued and the Federal Court ruled that the city discriminated against people with a disability because it failed to consider them in plans for a large scale natural disaster. Link: http://dralegal.org/press/federal-judge-rules-new-york-citys-inadequate-disaster-plans-discriminate-against-hundreds-of-thousands-of-new-yorkers-with-disabilities/

Much has changed since Sandy. Emergency managers are not only listening but including disability issues into evacuations plans. How well this will work at present is unknown. What I do know is that emergency planners are very much aware and concerned all people are evacuated. By itself, this is a huge leap forward. Below is a short documentary about our work.

More on the Murder of Courtney Liltz

Yesterday I wrote about Bonnie Liltz who was due to be sentenced in court for murdering her daughter Courtney. The prosecutors in the case recommended she receive no prison time and simply be put on four years of probation. The Judge Joel Greenblatt rejected the prosecutor recommendation and sentenced Bonnie Liltz to four years in prison. According to various news reports, Liltz, appearing to be frail,  burst into tears upon hearing the verdict. Liltz’s family was stunned. Liltz bond was revoked and she was immediately taken into custody. The Chicago Tribune and multiple local Chicago news outlets covered the sentencing. The sentencing received some national attention as well. I spent the morning reading the reaction to the sentence. Not surprisingly, the reaction was highly emotional. The dominant theme was the case is tragic. Based upon my reading, the dominant opinion was that the sentence was far too harsh. This is not surprising. Life with a disability is consistently devalued. Stigma consistently clings to disability. We people with a disability are fearful reminders of just how fragile the human body is. Symbolically, we represent the limits of medical science and technology. Our lives are inherently compromised and we are less human. How do I know this? I am reminded daily by typical others in large and small ways. Today, my reminder was a trip through the comment sections of various newspapers that covered the sentencing of Bonnie Liltz. Below is a random sampling of what I found. It reflects an ugly side of humanity I have become accustom to encountering.

This woman should receive some serious credits for all the years she took care of this young lady whose own parents apparently are not to be found.

This sentence warrants an immediate appeal. This woman is *not* a criminal!

Daughter had zero quality of life.

Wrong headed decision for sure. Judges generally go with prosecutors. This poor woman will now suffer more. Judge Greenblatt got his pound of flesh

She should just get counseling. This not your normal case. imbecile judge.

The prosecutor asks for probation and the judge gives her 4 years? Insane. Sadistic.

This judge ought to be recalled or kicked off the bench. A desperate mother in a desperate situation. Shame on the Judiciary of Illinois!

Four years in prison is uncalled for. This lady is not a threat to society and prosecutors even asked for probation. This is a judge being a big shot on a woman who is already suffering. This isn't justice.

I support euthanasia for people like Courtney who suffered on a daily basis. This was a mercy killing from her mum,

For the judge to say what she did was not an act of love is what irritates me the most.

She should have gotten probation. What she did was out of love.

Joel Greenblatt -not exactly a man of compassion. Even the prosecutors asked for only probation. Now this woman's life is ruined even more. Greenblatt from his statements thinks he is God. Greenblatt should be removed from the bench.

The above comments are disheartening. They are a reminder of what people really think when disability in the broadest sense of the term enters one’s life. Let’s be very clear: Bonnie Liltz is now a convicted murder. Yet she has received an unprescedented amount of sympathy. A large contingent of people think she should not be imprisoned at all. One commenter quoted above suggested euthanasia should be a legitimate option for people like Courtney Liltz. The quality of life Courtney had was deemed substandard. Her death while sad was in fact a blessing, an act of mercy.   Stephen Drake was quoted in the Chicago Tribune and he really hit the nail on the head with the following: “Its almost a sainthood thing. This mother took care of someone no one else would want in her home, so maybe we should go gentler on her. In order to treat a perpetrator more gently than other perpetrators, we have to devalue the victim.”Link: http://www.chicagotribune.com/suburbs/schaumburg-hoffman-estates/news/ct-mother-killed-disabled-daughter-sentence-met-20160518-story.html

Living a devalued life is something I have forcefully rejected for the last 35 years. I do not consider my life as being devalued in any way shape or form. I am content with my existence and body. I wish others perceived me as equally valuable but I know that is not the case. Where ever I go I am a problem. Likewise, caring for Courtney Liltz was a problem. She had the mentality of an infant. She required a great deal of care. She was suffering.  She could only say a single word. This is a tragic existence for mother and child. The child in this case was a 28 year old woman. The bar was set low for Courtney’s care because her quality of life was equally low. Bonnie Liltz was praised for taking immaculate care of her daughter. All news outlets stated Courtney was kept clean. She was well fed.  She was in good physical condition. Mother and daughter slept in beds a few feet apart.  But wait there is more. Bonnie Liltz socialized with other people and included her daughter. She took her for walks. Her house was spotlessly clean. This makes no sense when compared to a typical parent raising a typical child. The implications here are obvious to me.  Apparently they were obvious to Judge Greenblatt as well.  In sentencing Bonnie Liltz he stated:

Life is precious. Even a life that is disabled. Even a life that is profoundly disabled. Your daughter, Courtney Liltz, was innocent and vulnerable and fragile. Her life was fragile. All life is fragile. The choice you made was not an act of love. It was a crime.

Murder is murder. All the emotion in the world should not obscure this fact but obscure it is when disability is present. Bonnie Liltz broke down in tears upon being sentenced. Her family and lawyer were shocked.  I may sound cold hearted but Bonnie Liltz did the unthinkable: she committed murder. Stephen Drake noted “we put high penalties on murder because we send a message that we value life”. According to the Bureau of Justice Statistics, the mean prison sentence for murder and non-negligent  manslaughter was nearly 20 years and 8 months; the median was 24 years and 3 months. I am no legal scholar but Bonnie Liltz got a very light sentence. She could have been sentenced as charged and convicted to 14 years in prison.  In theory Liltz could take back her guilty plea. She could then go to trial for first degree murder but this carries great risk in the form of a 20 year mandatory minimum sentence. For now, Liltz defense lawyer will file a motion seeking reconsideration of the sentence. 

I am deeply bothered by the way in which this case has been framed and the overwhelming support Bonnie Liltz has received. This case reminded me of a memoir I tried to read that has gotten uniformly high praise--High Blue Air by Lu Spinney. The book details the aftermath of Spinney's son who experienced a severe traumatic brain injury in a snow boarding accident when he was 29 years old. For more than 5 years she and her family cared for her son. She detailed his recovery and what it was like to care for someone in a minimally conscious state.  At some point, Spinney came to conclude her son's life was one long experience of unbearable suffering. She wrote:

I thought, how can he want to continue? His life was day-long, night-long torture. But I assumed there was nothing we could do except to continue doing everything we could to make his existence more comfortable. The most painful thing was imagining him, in his moments of awareness, feeling so profoundly lonely, unable to communicate, totally dependent on other people for every single aspect of his life. He was a ghost of himself.

I don't have the heart to recount the rest of this memoir. Suffice it to say, Spinney concluded the only "gift" I could give him was death. Death as a gift? A parent frames the death of their child as a gift? Between the murder and of Courtney Liltz and this memoir we are in unchartered waters. What happened to Dylan Thomas famous poem "Do not go gentle into that goodnight"? What happened to placing value on all human life? I understand broad based advances in medical technology have created unimaginable ethical conundrums and end of life care is exceedingly complex but where is our humanity. We live in a world in which a parent considers death is a gift to be bestowed upon her son. A world where a parent murders their child with a severe disability and is shocked she gets sent to prison. This is so wrong my heart breaks. 

Murder is Murder: Misleading Spin

On May 27, 2015 Bonnie Liltz murdered her 28 year old daughter Courtney at their home 30 miles outside of Chicago.  Bonnie Liltz survived the murder suicide attempt. Her daughter, Courtney, died a week later. Bonnie Liltz has received a great deal of sympathy. Her lawyer reports she has gotten letters of support from all over the country. Prosecutors and Liltz defense attorney, Thomas Glasgow, agreed that jail time is not going to be suggested. Initially charged with first degree murder in the death of her daughter last week Liltz pleaded guilty in Cook County Court to the lesser charge of involuntary manslaughter. Prosecutors have recommended that she receive four years probation and mental health treatment. It is possible the judge could send Liltz to prison for 14 years however this is not expected to happen.

What have I left out of the above story? Sympathy for a murderer? No prison time for a mother who murdered her own daughter? How is this possible? More astounding, cases like Liltz though uncommon are not exactly rare. The variable left out is disability--severe disability. Bonnie Liltz adopted her daughter at the age of 5. She knew Courtney had cerebral palsy and profound cognitive deficits from damaging seizures when she was two years old. Courtney could speak only one word: "Momma". Over the last year all news accounts have been extremely sympathetic to Bonnie Liltz. There is no need for me to provide links. The sympathy is universal. News accounts have been dominated by raw emotion. Bonnie Liltz is described as a uterine cancer survivor. Diagnosed at 19 years old her body was ravaged by radiation therapy and her survival came at great cost--she could not conceive herself. Hence she adopted Courtney and boundlessly loved her. She cared for Courtney and attended to all her needs 24 hours a day for two decades. They shared the same room and their beds were mere feet apart. Her friends and family told the judge Bonnie was devoted to Courtney--she was in fact her life. A friend stated "Courtney was always clean, neat and nourished". When Bonnie Liltz pleaded guilty the court room was filled with supporters. As for Liltz herself she stated in court "I would like nothing more than to turn the clock back and have the ability to care for her again. I have pain inside that is beyond words". According to court transcripts, Liltz recalls waking up in severe pain and "soiling myself and my bed. My heart was pounding and I was shaking and sweating profusely. She had just been given a grim prognosis from a physician and was convinced she was dying. She wrote a hastily written suicide note and added a lethal amount of prescription drugs into her daughter's feeding tube. She then drank what she thought was a lethal cocktail of drugs in a glass of wine and expected to die. In the suicide note she wrote "I am so sorry to put you all through this but I can't leave my daughter behind. She is my life."

No doubt this is a tragic story. Suicide is the tenth leading cause of death in the United States. As a father, murder suicide is unimaginable. But murder suicide is not unimaginable for all parents. Lilts'z concerns are in fact common among those parents that care for a severely disabled child their entire lives. Curt Decker of the Disability Rights Network hears this from parents who care for their severely disabled children. They know all too well that eventually they will be physically unable to care for their children. They know their children will out live them. They are justily terrified and their worries are universal--who will care for my severely disabled child after I die. This population of people, severely disabled and their parents who do care 24 hours a day, are nearly invisible. The social supports are grossly lacking. Bonnie Liltz had good reason to be fearful for her daughter's future care. In 2012 Liltz had surgery and had to put Courtney in a nursing home for a week. Courtney did not understand why her mother was not present. Upon her return home Bonnie Liltz knew her daughter was upset and not herself. Bonnie Liltz was appalled by the substandard care her daughter received in the nursing home. According to court transcripts, Liltz maintained she was neglected. Liltz said Courtney was "covered in drool, her clothes were wet, and she was sitting in her own filth in a corner. It was with that memory that I felt the only place I knew she would be safe and happy would be in heaven with me".

I understand the emotion. Any successful or failed murder suicide  is tragic. But lost in the emotion and support for Bonnie Liltz is a massive social failure. Parents of children with severe disabilities are terrified of what will happen to their children when they die. Think about this. Think of what this fear implies. Think of the injustice. Think of the substandard care. We are talking about the most vulnerable humans. How can we as an advanced civilization let this happen. For me the tragedy is that those parents who care for severely disabled children have a very real and legitimate concern. If I were in their situation I would be just as worried.

Compounding parents fears is the fact Bonnie Liltz is getting a great deal of sympathy. As many disability rights experts have noted, the implications for the sympathetic treatment Liltz has received is troubling. Did Courtney's life have less value? The lenient treatment surely indicates this. Murder is murder is it not? There is no doubt this case involved premeditation. Legal experts in Chicago seem to agree probation is an appropriate sentence. Jeffrey Urdangen, director of the Center for Criminal Defense at Northwestern University Pritzker School of Law believed the sentence recommendation was "not so much about sympathy but the prosecutor decided there was sufficient mitigating evidence. This is an exceptional case. Sending a woman who's got a critical illness to prison for an act for what some could interpret as mercy... There are so many facts that lessen her culpability"

These words terrify me. Is killing a severely disabled child an act of mercy? Is killing a person with what is perceived as being a severe disability mercy? The facts in this case are couched in kind words. Let me cut to the chase: Coutney Liltz's life was not valued. Life with a severe disability, especially a severe cognitive disability, is not valued. Such an existence is not valued and deemed less. Life with a disability is inherently inferior. Where does this line of logic end? Where does one draw the line? Are we going to try and eliminate all people with a disability as Hugh Herr of MIT is trying to do? Perhaps we just end the life of those with a severe disability? If so, how do we define and identify what is and is not a severe disability. If a person experiences a spinal cord injury at what level of injury is life not worth living. How about those that experience a traumatic brain injury? Are the lives of those in a minimally conscious state worth living? What about those with dementia? At what point is the quality of life so limited we can  end their lives?

The public health care implications are significant. According to Glenn Fujiura, professor in the Department of Disability and Human Development at the University of Illinois at Chicago, 80% of adults with significant development disabilities live at home with aging parents. Liltz is in fact not an isolated case but a harbinger of future cases. Fujiura notes the Liltz case is a prime example of a larger broken system. I predict without substantial social change cases such as Bonnie Liltz will become increasingly common. This grim thought is obscured by the mainstream media that focuses not on the larger broken system of inadequate social supports for the most vulnerable but rather on the diminished value we place on the lives of those who live with severe disabilities. Bonnie Liltz needed robust social support not sympathy. She valued the life of her severely disabled daughter Courtney. The fact our society did not provide adequate social supports for Courtney Liltz is the real tragedy. A 28 year old woman died needlessly. A mother felt her only option was to murder her daughter and commit suicide. This is the tragedy. Worse, more deaths will follow unless we pay attention to the very real social injustice that took place.