Tuesday, August 16, 2016
Its been a while since the Me Before You protests were held. The film is thankfully no longer in theaters however its impact will live on. In the last week I have noted Me Before You is readily available for home viewing Who would buy this ableist trash is a mystery. By the same token, the idea of buying any film or paying for music now seems odd to me. Regardless, a few months ago I wrote the below post but was not happy with it and hence never put it up. I edited it today and think it is worth a read.
Sam Claflin who plays Will Trayner in Me Before You is by Hollywood standards a handsome man. His counterpart Emilia Clarke who plays Louisia is strikingly beautiful. Tear jerkers and romantic comedies require leading characters that are exceptionally attractive. The various trailers show Will in a tuxedo and Louisa in a striking red dress and one clip of Louisia sitting on Will’s lap at a wedding party. When I see these images I laugh at Hollywood stereotypes that defy reality. As a paralyzed man many a fine looking woman have sat on my lap. However, any woman that sat on my lap with the sort of dress Louisa was wearing would be angry the second they got off my lap—their dress would be stained. In real life wheelchair use is messy and grime is simply part of life. The nitty gritty associated with wheelchair use ain’t pretty. This fact never entered into the mind of JoJo Moyes, the author of the book the film Me Before You is based on. The reason Moyes never thought about this is because she never bothered to conduct any research into what it is like to live life as a quadriplegic. She left that thought process to her ableist mind.
I have low expectations when it comes to romance novels. I have even lower expectations when it comes to romance movies. Emotional fluff does not appeal. Me Before You is such fluff with a twist. Will is a quadriplegic, handsome and fabulously wealthy. Will is also the stereotypical miserable, angry bitter man post spinal cord injury. Lou as she is known in the film is the opposite. Lou is terminally chipper and has a large smile in seemingly every scene. Lou dresses poorly and was born on the wrong side of the tracks. Her life and that of her family is an economic struggle. But lordy be it’s a miracle! The radically different couple fall in love. Lou will save the day. She will single handedly convince Will that life is worth living. They will fall in love and all will live happily ever after. Not so fast. I am writing about a disability snuff film not your average romance film. This book and film are different. Will is killed. Will, once a man of action, goes to Dignitas, the Swiss assisted suicide facility to die. Oh the tragedy. Tears flow forth and female teenagers hearts are broken. They gush about how brave Will was, oh how so loving was his sacrifice. Able bodied audiences cried their proverbial hearts out this summer. I seethed in anger.
Stop. Let’s back up. The characters fall in love. People who are in love have sex. Here we have a gorgeous couple. There must be some gratuitous nudity. If not an out right nude scene at least a memorable bikini or wet shirt with visible nipples should be in the film. This is standard Hollywood fodder. Sorry, but no. There must be at least one sex scene—chaste or not so chaste. Nope. Not one moan, not one groan, not one look of wonder on Will’s face when he sees Lou naked for the first time. Oh there is some banter about Lou’s magnificent breasts. There are supposedly touching scenes of Lou and Will falling in love. There are standard humorous scenes as well. The sexual contact between Will and Lou though is G rated. Think timid in the extreme. The only conclusion one can reach is not only can’t Will walk but he sure as hell can’t have sex. He says so himself. He is a quadriplegic. He is a head atop a dead body. His life is a fate worse then death. s.e. Smith has noted:
We’re supposed to think it’s wild and a bit racy that a nondisabled person would find a wheelchair user attractive — and of course he’s very conventionally attractive, which is supposed to make him all the more pitiful, a powerful, beautiful man brought down by the horrors of disability. The message for audiences is that disabled people are objects to be viewed from afar and pitied,
I am among the first generation of paralyzed people to forcefully reject the stigma that stubbornly clings to disability. I reject the pity, stigma, and rampant ableist assumptions made about the quality of my life. This makes me a decidedly unpopular person. Worse yet, I have acknowledged my sexual identity. In powerfully rejecting worn out stereotypes I am subjected to intense societal backlash. Last year I wrote an essay, “Head Nurses” that was censored by Northwestern University. The controversy surrounding my essay played out in a very public and heated manner. Looking back a year later I have no doubt the reason my essay was controversial is that as a paralyzed man I refused to set aside my sexuality. In short, I undermined the myth that people with disabilities are asexual or unable to satisfy their sexual desires.
I find Me Before You deeply objectionable because it perpetuates the myth people with disabilities are asexual. Will and Lou never consummate their relationship. They don’t even come close. Will is to the best of my knowledge the first strikingly handsome male lead in a romance film to be completely asexual. This is troubling to me. Human sexuality forms a core part of our identity. Sexuality is an important part of the human experience. Moreover, men and women have reproductive rights and those rights include those with and without a disability. However, when disability enters into these essential discussions non-disabled people get uncomfortable. Disability and sexuality remains taboo and by extension people with a disability are not considered to be parental material and worthy of love. These assumptions are of course wrong and Me Before You profoundly undermines the human rights that the ADA is designed to protect.
Me Before You is far from the only Hollywood film that badly mangles disability and sexuality. Films that leap to mind are Whose Life is it Anyway and Million Dollar Baby. Disability representation always seems to be used as a plot device to grease the skids of a miserable story. We all know anything and everything disability related is inherently bad. While people who use wheelchairs are far more likely to be depicted in film and television in recent years, Hollywood rarely hires disabled actors or actresses with a disability. The roles of people with a disability in film are awarded to non disabled people like Sam Claflin. Penny Pepper in the Guardian discussed noted this obvious bias:
Prevailing discussion on sexuality among disabled people tends to the broad and the satisfyingly contradictory – but there’s a strong disconnection between what we discuss and what fascinates the non-disabled. Even if the sense of taboo starts to lessen, we’re still left out of debates about sexual freedoms, and have been since the 60s. Instead our sex lives are discussed in terms of these “issues”: what it’s like to be non-disabled and have a disabled partner; what a disabled person might face if they want to have children. It’s even an “issue” if you want to go on a casual-sex rampage! Overwhelmingly, disabled people experience discrimination by way of barriers and negative attitudes. This is as true of sexual adventure as it is of everything else.
I do not have any issues with regard to my sexual identity or my sex life. I do have issues with the way in which non disabled others think about my sex life. I have had to confront this head on my entire life. I have been asked “can you have sex” continuously for 38 years. The question is not really a question but rather affirming that I am an asexual being. The assumption has never changed—I cannot have sex. Strangers have asked me this. People from every walk of life have asked me. What no typical others seem to get is that the question itself, can I can have sex, is dehumanizing. If I were not paralyzed the question would never be asked. But paralyzed I am. Misrepresented I am as are all those with a disability. The battle for disability rights is far from over. Yes the law is on our side thanks to forty years of progressive legislation but the stigma closely associated with disability is reinforced by films like Me Like You. To return to Pepper:
we fight, on many levels, for our experiences to be recognised within the broader body of human experience, to have our views genuinely represented in all their forms, and expressed by our own creatives across all art and popular culture – and always with a favourite mantra from our activist movements: nothing about us, without us.
Please don’t tell me about the exceptions that exist. The Sessions was a good film but is far from the norm. Even the Sessions had serious flaws. The main character had to seek out a sexual surrogate and was a virgin. The not so unintended message was no woman could possibly be attracted to a man who is severely disabled. Think about it another way: how many characters on film and TV played by an actor or actress with a disability are portrayed as sexual beings? This omission has a real impact on lives lived. This thought prompts me to think way back to those awkward early years as a paralyzed man. In 1978 I was a newly minted paralyzed guy. When I launched my adult life at college I was shy and eager to date. I was also eager to have sex. I quickly learned many women instantly dismissed me as a potential partner. This was difficult to accept and an ever present reminder I was in all ways less. I truly had a social disease as Robert Murphy would often quip. Then for a short period of time my dating life picked up. The anti Vietnam movie Coming Home with Jon Voight and Jane Fonda was released. One of the characters was a paralyzed man played by Voight. I loved this movie in part because it was the only film in which a paralyzed man was portrayed as sexually active. Better yet, the character was sexually skilled and provided his female partner with sexual pleasure her able bodied husband did not provide. I was thrilled. Apparently my female college peers had similar thoughts. Women that had once instantly dismissed me were having second thoughts. That is the sort of power Hollywood has on popular culture. Don’t be fooled by those involved in making Me Before You. Movies play a central role in how we perceive others. The film is ableist propaganda and not about one man and his choice to die as Moyes maintains. It is a film that perpetuates disability based prejudice. As such it is and will remain a disability snuff film. It is proof positive ableism kills.
Sunday, August 14, 2016
Death is in. Death by choice is a popular idea. Imminent death is a reason for celebration. Invitations are sent out. Let's party--but no tears please. Tears are not allowed. That is the only rule. Do not go home empty handed. Party goers are encouraged to take a souvenir from the soon to be deceased. This is not a parody. This is not some Saturday Night Live spoof. This is what assisted suicide legislation has led to. Countless news outlets are showing the happy face of Betsy Davis "rebirth" celebration. The pinnacle of the two day extravaganza was Davis death. She took a lethal prescription of morphine, pentobarbital and chloral hydrate prescribed by her physician. She had trouble obtaining the prescription. Outrageous! Big brother apparently watching physicians and pharmacists. Davis was an artist and one of her friends, a cinematographer, deemed her death as a "final performance". Davis death her friend gushed: "what Betsy did gave her the most beautiful death that any person could ever wish for... By taking charge, she turned her departure into a work of art". Here is photographic evidence, proof I am not writing a satire.
Various low brow news sources such as People and tabloids like the NY Post and others gushed about how beautiful Davis death was. Reputable news outlets were equally effusive. Davis was described as the text book case for assisted suicide. Davis has been diagnosed with ALS and was very clear she did not want to be entombed in her body dependent upon breathing machines. Davis spent months planning her party and had the full support of her family, physician, and friends.
We have arrived at a perverse destination. In states where assisted suicide is legal death has become a life-style choice. Assisted suicide is a life-style choice. Read that again, please. Davis is not alone in her decision to exercise her "right" to die. Yes, death thanks to years of advocacy, successful advocacy, is now popularly framed as the right to die. Individuals who live in states where assisted suicide is legal have the right to die. They can exercise this so called right. I find this hard to comprehend. Led by Compassion and Choices and many well known figures it is popularly assumed all people have the right too die. A host of celebrities have affirmed this and Compassion and Choices in recent years has been wildly effective in manipulating the mainstream press into supporting assisted suicide. NPR's Diane Rhem is outspoken in her championing assisted suicide and is deeply embittered her husband was denied the right to die.
I am stunned by how widely accepted the belief is that we have the right to die. This so called right is human pride and the glorification of a narrow definition of autonomy taken to an extreme. The idea we have the right to die is misleading rhetoric. It is wildly successful misleading rhetoric. For example, every Fall I teach a class at Syracuse University Bioethics and Disability. I take a life cycle approach, starting with ethical dilemmas associated with conception and birth and end with issues associated with end of life care. In the last three years I have learned to expect 100% of my students are firmly in favor of assisted suicide legislation. More generally when I express my opposition to assisted suicide legislation to typical others they are not happy. They assume I am deeply religious for I am repeatedly told there could be no logical reason for being opposed to assisted suicide. I find this distressing and find myself increasingly unlikely to broach the subject. Assisted suicide as popularly framed is a stark dichotomy of yea or nay. There is no middle ground and tempers run hot.
Rraming death as a right conveniently ignores the inherent worth of the individual. The individual in the case of assisted suicide is often terminally ill and the paramount fear is that one will suffer. Suffer is code word for becoming disabled; ALS being the worst case scenario. Hence a diagnosis of ALS now comes with a chilling option: assisted suicide as a life style choice. The decision to choose assisted suicide will be met with universal support. No one wants to be "entombed" in a body that is grossly dysfunctional. Life with ALS is a fate worse than death. Total paralysis, especially locked in syndrome is the greatest fear of all. Davis is the post card image of tragedy. Here I am not denying ALS is a devastating condition. But pardon me for noting that we humans, all humans, should garnish minimal respect. By minimal respect here I believe we have the right to live. Liz Carr recently reframed the right to die being discussed In Britain as the right to live and wrote:
perhaps we should be looking at how we can offer greater choice to all people at the end of their lives and not just the few who want a physician assisted death? The Assisted Dying Bill would establish medically assisted suicide as an acceptable and even expected societal response to pain, disability, life limiting conditions and terminal illness. This is to ignore the social factors, such as poverty and lack of social care that can also create suffering in people’s lives. Denied the support to live – or die - with dignity, is it any surprise that people feel they have no choice but to end their lives? What terminally ill and disabled people need is an Assisted Living not an Assisted Dying Bill. Supporters of assisted suicide will tell you that the current law is broken but the current law is exactly where it needs to be when the consequences of making a mistake would be murder. Safety of the many has to overrule the desires of the few. What is broken, however, are the social and health care support systems which are currently failing us all, both during and at the end of our lives. Whether for or against this law, we all deserve as pain free and comfortable death as possible. Legalising medically assisted suicide is not the solution. Link:http://www.itv.com/news/2015-08-14/actress-liz-carr-we-need-an-assisted-living-bill-not-an-assisted-dying-bill/
I never cease to be amazed at how the wants of a very few privileged people such as Davis garner so much attention. I marvel at how the focus on choice is used to mislead. I recently read Peter Kurti "The Myth of the Right to Die" who eloquently addressed the rhetoric associated with state endorsed euthanasia. In this case, I refuse to use the euphemism "the right to die" for we are really talking about the legality of euthanizing human beings believed to be terminally ill. Let's be clear with our words here. Kurt wrote:
Proponents of the right to die defend this ownership of the “end” and argue that they want to uphold the key principle of individual freedom. Freedom is a basic good, they say... This absolutist view of autonomy comes very close to asserting that the desire or the choice—or even the need—to die must be understood as a right to die. Choice is paramount; but choice has little to do with “rights”. While I can certainly choose to end my life and may desire to do so, the idea that I have a right to do so is not simply erroneous. By harming the web of social relations and obligations comprising community and family life, claiming a “right to die” actually threatens to tear at the fabric of civil society and do irreparable harm to the social roles and attachments constitutive of individual identity. Exercising the freedom to end one’s own life is coming to be seen as a mark of autonomy and independence of mind. But this view, although increasingly widely held, is mistaken because it ignores prevailing social proscriptions about suicide. The “right to die” is a rhetorical device intended to halt further discussion about the acceptability of self-inflicted death. The “right to die”, in other words, is a myth. Link: https://quadrant.org.au/magazine/2016/07-08/myth-right-die/
People like Davis have plenty of opportunities to make a myriad of choices about the manner in which they willing to extend their life. All people have the right to refuse medical care. One can forego taking life savings antibiotics when an infection is present. A parent with deeply held religious beliefs can refuse to allow physicians to give their child a life saving blood transfusion. The right to refuse medical treatment is a right held by all who are capable of giving informed consent. This is not a right to die or a right to be killed with a lethal prescription. There is a huge ethical gulf between a physician who specializes in palliative care giving a patient pain relief, ameliorating suffering and prescribing a lethal dose of medication. Advocates for the right to die are using euphemistic language to gain the moral high ground. This tactic is working. For example, Davis's sister wrote:
Early on, she knew she’d rather take her own life than succumb to a disease that kills most of its patients through suffocation. Some ALS patients use ventilators and feeding tubes to prolong their lives, but that’s not what my sister wanted. Over the last year, I watched her increasingly struggle to eat and speak and do the simple things the rest of us take for granted, like scratch an itch or brush a stray hair from her eyes. No longer able to walk, she spent most of the day in bed. Link: http://www.voiceofsandiego.org/topics/commentary/what-i-learned-helping-my-sister-use-californias-new-law-to-end-her-life/
No physician could force a patient to accept a feeding tube. No physician could force a patient to use a ventilator. These are choices Davis chose to make. At any point after she was diagnosed with ALS she had the choice to refuse treatment. Physicians could be opposed to Davis refusal to utilize life extending care but that would be her choice. The operative word here is choice. Davis made many choices post ALS diagnosis. In June of this year Davis made the choice to live long long enough to end her life via assisted suicide. She made these choices and many more. But there is a difference between making these choices and her human rights. Choice are not the equivalent to rights. Given the severity of ALS any one of a number of choices Davis made could have led to her death. Instead, she made a choice to die a very public and misleading death. In her effort to advocate for assisted suicide legislation she has had predecessors who also had public deaths on behalf of Compassion and Choices. The emotional rhetoric found in tabloids such as People sells. Sympathetic television news segments generate ratings. Again, this misleading emotional made for mass media consumption works. The fact it is wrong is lost in the flow of tears. I too cry but not for Davis but for all those whose lives are at risk.
Having been through the medical mill as a morbidly sick child and narrowly escaping death from a severe wound that took over a year to heal, I will readily admit I have suffered. That suffering has taken the form of gut wrenching pain and serious debilitating depression. Suffering is decidedly unpleasant but to expect to avoid suffering throughout one's life is not realistic. I do my best to avoid suffering but I can freely states I have suffered far more the average human being. Not to revert to my Catholic upbringing but I can state with certainty that suffering has made me a stronger human being. In an effort to eliminate suffering we are being foolish. I don't want others to suffer but like it or not all humans will suffer. Suffering is part of the human condition. The effort to avoid suffering is understandable but unrealistic and there is more than a bit of narcissism involved. Hence the death selfie:
I am sure my words will be met with disgust by those who support assisted suicide legislation. How dare I criticize a person's "right to die". How dare I impose my beliefs on others. Some will proclaim I am an opponent of individual freedom. Others will proclaim I want to undermine autonomy. This makes good fodder for debate. Typical others thoroughly enjoy such a debate. A perfect example of such a "good natured debate" can be found the edited volume Cognitive Disability and its Challenge to Moral Philosophy. Read Chapter 22 and the exchange between Eva Kittay, Jeff McMahon, and Peter Singer that illustrates we are talking about a two tiered morality in which some lives have more value than others. I know this two tiered system all too well. Most of my life typical others have made it abundantly clear my life is inherently less. Paralysis is a fate worse than death. My body in Davis estimation has been entombed. This viewpoint is wildly wrong. I know this. Liz Carr knows this. My paralyzed peers know this. My blind and deaf friends know this. Our ability to thrive in the face of a myriad of bodily deficits should be celebrated as human adaptation at its finest. Instead, we get the message loud and clear. We are inherently less human. We are a burden. We are a drain on limited health care resources. All things considered, it would be in the best interest of society if we did live. This is couched in polite language of course. Everyone is kind to the handicapped. We cripples are special. We have your best interests in mind I am told. When I hear these words, "we have your best interests in mind", I am certain of one thing: I shudder in fear and get as far away as humanly possible from the person that uttered those dangerous words. Believe me, I can take care of myself. I have thrived in a hostile world for over 35 years. Don't be fooled by emotional rhetoric surrounding the right to die. See it for what it is. Needlessly premature death to lives worth living.