Does the film Me Before You Glorify Medically Assisted Death for Disabled People?

Although it might feel awkwardly placed, I want you to read the plot of the film before delving into my critique of the concepts it touches on. I will then return to the film so that you can follow my critique of the movie itself with the previously discussed themes in mind.

Me Before You movie poster. Will is shown (Sam Claflin) reclining in his wheelchair while Lou (Emilia Clarke) sits on his lap. Will is dressed in a navy suit and Lou is wearing a red dress. The characters are smiling at each other.

(Sharrock 2016)

Movie Summary

Me Before You is a romantic drama film adapted from Jojo Moyes' novel by the same name. Jojo Moyes also wrote the screenplay for the movie adaptation. Her story follows the budding relationship between quirky small-town-girl Lou Clark, played by Emilia Clarke, and wealthy thrill-seeker and Casanova Will Traynor, played by Sam Claflin.

Although the characters are complete opposites, the unlikely pair are brought together when Will is hit by a motorcycle, resulting in a spinal cord injury that leads to paralysis. Two years after the accident, Lou is hired to become Will's companion. Upon meeting him, she quickly realizes that he is cynical, austere, and incredibly hostile. It becomes evident that her job is not to physically care for him, but to cheer him up and reinvigorate his zest for life. Over time, Lou's charming girl- next-door personality, her refusal to treat Will like glass, and her genuine care for him makes a crack in his cold demeanor. This leads to the two developing a close friendship belied by the beginnings of romantic feelings for one another.

Later, Lou learns that Will has plans to undergo physician assisted death in Switzerland in a few months. Devastated by this news, she makes it her mission to convince him that his life, and more importantly, life with her, is worth living. Lou creates a bucket list for Will, after which the two are seen attending horse races, orchestral concerts, and going on world-class vacations. Yet despite these efforts and the love Will and Lou have developed for each other, Will chooses to move forward with his decision to end his life because he cannot accept being disabled.

The final scenes depict an emotional goodbye between Will and Lou at DIGNITAS, the organization facilitating Will's death. The film then shows Lou several weeks later in Paris, who has been gifted an unexpected financial windfall in the wake of Will's death. In a letter, he urges her to use this money to buy her financial freedom, enabling her to travel and experience the world. He concludes by telling her to live well, saying that he will be walking with her every step of the way.

Various terms for assisted dying.

Assisted Dying: Is It Considered Suicide?

I will start by saying that suicidal ideation is a strong indicator of a serious mental illness that can be mitigated by treating underlying conditions such as clinical depression, anxiety, or PTSD. If you are experiencing suicidal thoughts, contact the National Suicide Prevention Lifeline at 1-800-273-8255 for support.

Before getting into the rationale behind my personal opposition, It is important to acknowledge why medically assisted dying is supported. There is a lot of debate around the terms used to describe medically assisted dying. For instance, "physician assisted suicide" or PAS is often critiqued for the moral character it imposes on people choosing to end their lives in an effort to minimize mental and physical suffering. The death with dignity movement is centered around patients who are diagnosed with an illness that is likely to result in death in the near future. Thus, the patient's ability to end their life on their own terms is seen as an act of autonomous decision making. According to the organization Death with Dignity, medically assisted dying allows terminally ill patients who are at the end of their life to "hasten their death in a peaceful, humane, and dignified manner" (Death With Dignity 2020).

"Physician-assisted dying isn't suicide legally, morally, or ethically. Patients already are dying and therefore are not choosing death over life but one form of death over another."

-Ed Gogol, Final Options Illinois

(Death with Dignity 2020)

Ambiguity of "Terminally Ill"

That being said, the impact of assisted death is not limited to terminally ill patients. Socio-medical understandings of suffering incorrectly lump people with disabilities in with those who are terminally ill. While the disability community is a strong advocate for personal autonomy, historically speaking, disabled people have been disproportionately impacted by this practice.

The support of assisted death practices is heavily based on the idea that dying is an act mercy; that one's life is no longer worth living and thus that they might find peace in death. For someone diagnosed with a painful progressive terminal illness, perhaps that is true for them. However, in the context of assisted dying, the term "terminal illness" is more ambiguous than you would think, even for medical professionals (Hui et. al. 2014). This is because, according to Dr. Clare Gardiner, accurately predicting how long someone has left to live is extremely difficult (MDMD 2019). In the most common understanding, "terminal illness" has come to mean "a disease or condition which can’t be cured and is likely to lead to someone’s death" (Marie Curie Foundation 2019). However, medical professionals have been cited suggesting prognoses of "24 months or less, 12 months or less,” “9 months or less,” “6 months or less,” “days or weeks,” “shortly,” “within a foreseeable future” and “unfavorable prognosis” (Hui et. al. 2014).

Terminally Ill or Disabled?

In fact, some organizations in favor of medical death use different parameters or even reject them entirely. For instance, My Death My Decision UK believes the standard 6 month prognosis definition of terminal illness is too narrow. They state: "MDMD believe that people suffering from incurable illness should be helped to have as high a quality of life as possible, for as long as possible, but that when they find their quality of life permanently below the level they can tolerate, they should have the option of a medically assisted death" (MDMD n.d.). Why is there such a focus on curable or incurable illnesses? Why is it that if someone has an incurable illness, they are assumed to have a lower quality life? Medical experts are constantly trying to find a cure for all manner of disabilities, but not all people with disabilities want to be cured. For instance, Ben Mattlin, who has spinal muscular atrophy (SMA), recalls his mother's excitement about the possibility of a cure; he says, "I didn't want to give up everything I'd grown used to, everything that made me me. My disability experience had already informed my perspective on the world, and I had no interest in risking any alteration" (Mattlin 2017).

Even bolder than MDMD, DIGNITAS maintains that "in case of an illness which will lead inevitably to death, unendurable pain or an unendurable disability, DIGNITAS can arrange, on reasoned request and medical proof, for its members the possibility of an accompanied suicide" (DIGNITAS n.d.). Yes, you read that correctly. Having an "unendurable disability" is an accepted criteria for assisted death. Who is one's disability truly "unendurable" for? If it is unendurable for the person themself is this because they are made to feel like a burden by their doctors and caretakers? Or, is it really unendurable for the society which pathologizes disability and makes it difficult to live life as a disabled person in the first place, writing off their needs as too time-consuming and too costly to actualize? By DIGNITAS' logic, ending the life of a disabled person is a merciful act; the fact that being disabled makes one eligible for death clearly shows that disabled lives are inherently seen as lower quality than the lives of able bodied people.

It was only 80 years ago that Nazis enrolled disabled children in euthanasia programs because it was believed their death would alleviate society of the burden they posed (HUSHMM 2019). In the 1990’s, Dr. Jack Kevorkian conducted assisted suicides with two thirds of his patients being disabled people who were not terminally ill (Coleman 2015). While today's views are less blatant, they still live on in the way society perceives disability to be a tragedy, framing it as a loss worthy of pity and sympathy, or worse, as inspirational. Society believes disability to be so tragic that simply continuing to live on is praise-worthy. The language we use such as, "mentally handicapped", "suffering from paralysis", or "confined to a wheelchair" reflects this logic. These beliefs are deeply imbedded in the way people with disabilities have been treated throughout history. When society has been faced with individuals they do not know what to do with, they have often been killed, institutionalized, ostracized, and separated by any means necessary. Now we have graduated to killing them under the guise of self-determination. Assisted dying is simply the eradication of disability by another name.

"The sympathy we disabled people evoke can be used to justify support for us to kill ourselves... There is a fine line between those who are terminally ill and those who are disabled in public perception and the emotional power behind the campaign for assisted suicide is based on misplaced pity. Rather than telling us we have everything to live for- and we do- we are helped to the proverbial cliff edge and offered a push."

- Liz Carr, performer and disability rights activist

(Carr 2016)

Two- minute video explaining the differences between the medical model of disability and the social model of disability and how they influence societal perception of disability.

(Shape Arts 2017)

The Reality of Why People Pursue Physician Assisted Death (PAD)

According to a 2007 study interviewing family members about why their loved ones requested PAD, the decision to consider it as a viable option had less to do with the pain patients were experiencing and more to do with their fear of loosing autonomy, dignity, control, and independence. Of the 83 persons who requested PAD, 32 died from the procedure. (Ganzini, Goy, & Dobscha 2008). This is an important distinction because the loss of autonomy, dignity, control, and independence are all conditions created by how institutions and individuals in society interact with disabled people. A person does not inherently lack dignity; others are not treating them with dignity. A wheelchair user is not dependent on others to get around because of their physical limitations; they are dependent on others because the city in which they live does not have curb cuts and wheelchair-accessible taxis. Perhaps people do not "have a disability", but are instead disabled by the society in which they live.

By extension, the conditions which motivate people to pursue PAD can be minimized. If medical professionals were to understand disability as a function of society (the social model) rather than as a result of the individual's physiological and psychological condition (the medical model), physician assisted death might not be as common for people with disabilities. Instead of viewing death as a reasonable solution for disability, we should look towards societal change so as to reshape the way people with disabilities are perceived and supported.

Furthermore, "numerous surveys of terminally ill patients indicate that...desire for hastened death is associated with depressed mood, even major depressive disorder (MDD)", and that "PAD requests may be motivated by lack of access to good medical care resulting from poor finances or lack of overall social support" (Ganzini, Goy, & Dobscha 2008). Therefore, quality of life is not necessarily determined by one's physical condition, but rather the social conditions that are produced by it. Medical professionals need to create concrete plans to address patient concerns as well as assess patients for depressive disorders before considering PAD.

On Disability Discrimination

“Well-meaning people would like to put an end to [my son's] suffering, but they do not stop to consider whether he is actually suffering. At times he is uncomfortable, yet, but the only real pain here seems to be the pain of those who cannot bear the thought that people like August exist.”

- Chris Gabbard 2010

“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.”

- The Reeve Foundation 2016

"Some people get suicide prevention while others get suicide assistance, and the difference between the two groups is the health status of the individual, leading to a two-tiered system that results in death to the socially devalued group."

- Not Dead Yet, Coleman 2015

Proponents of assisted death often use the token example of a terminally ill cancer patient in order to convince us of its necessity as a human right. However, doing so obscures the fact that socially devalued people, those who have chronic pain or who have a condition with no foreseeable "recovery", are discriminated against in a highly coercive manner. Medically assisted death does not exist to alleviate the suffering of people with disabilities, but rather to alleviate the suffering of a society which, as Gabbard says, cannot bear the thought that people like this exist. Disability is not the worst thing that can happen to a person; gaining disability does not render a person's life lower quality or any less rich and fulfilling than it would be otherwise. Disabled people do not need suicide assistance, they need able bodied people to acknowledge that barriers are socially created and to re-conceptualize disability as more than a loss.

With all this in mind, it becomes glaringly obvious as to why Me Before You, a film that romances the assisted death of a disabled wheelchair user, is unacceptable.

Returning to Me Before You

A test for disability representation in media developed by Kenny Fries and modeled after the Bechdel Test for female representation.

(Fries 2017)

The Fries Test

Me Before You fails every single requirement of the Fries test: the lowest possible bar for disability representation in media. To put it bluntly, the disabled character Will Traynor is used as a plot device to advance the character development of the protagonist Lou. The title itself is at first ambiguous: who is "me" and who is "you"? However, it quickly becomes clear that the "me" is Lou, and the "you" is Will. This is a story about how Lou was personally changed by her relationship with Will and his decision to end his life. Prior to meeting Will, Lou lives a happy yet simple life with her family; she works in a cafe, loves funky clothes, and spends her time watching her clueless boyfriend run. Will, a wealthy and cultured man, teaches Lou about the beauty of luxurious travel, orchestral performance, and French film. He brings her out of her shell and then gifts her the money to "live boldly", something the film suggests Will is no longer able to do due to being disabled.

"Wild Willy" to Will Traynor

Will's use of a wheelchair and need for routine physical assistance is depicted as heartbreakingly tragic because of all the things he can no longer do. His monotonous existence which consists of watching TV, blasting music, and being bitter unrealistically portrays life as a disabled person as devoid of any meaning. Not once does Will interact with other disabled people; there is no disability community or culture to speak of in this film, no support through mutually-shared experience. Will never sees disabled people living independently and having happy, fulfilled lives. Because of Will's disability and subsequent loss of all his friends, he is shown to be helpless and resentful of his circumstances. His despair is so overwhelming that the character made several past attempts to end his life, as evidenced by the self-harm scars on his wrists. This sympathy-inducing portrayal of Will is starkly contrasted with depictions of the worldly life he led prior to his accident.

We watch Lou as she discovers an old video montage titled "Wild Willy's Birthday Video" featuring shirtless and muscular Will engaging in all manner of extreme sports while surrounded by a rowdy group of friends (Sharrock, T., 2016, 0:35:59). The video commentators even exclaim, "there are very few people out there who can claim to have out-bonded James Bond, but birthday boy "Wild Willy" Will Traynor is certainly one of them" (Sharrock, T., 2016, 0:36:03). He is shown as well-traveled, wealthy, strong, athletic, manly, sexy, successful, and desirable: the very picture of society's perfect man. This is immediately followed by a scene which cuts back to the present, where we see Will waking up after a day of feeling unwell. The harsh transition between Will's former greatness as a hot shot bachelor and his reduction to a frail, socially-isolated disabled man seems to be intentional. The message here is clear: Will had everything going for him until the accident took it all away. His girlfriend dumped him and married his best friend because of his disability. He can no longer participate in extreme sports with his friends because of his disability. He cannot seduce leggy blondes or have sex because of his disability; the list goes on.

It goes without saying that this is utter nonsense. This narrative completely glosses over the human ability to be resilient. Real people who gain disability later in life do not suddenly become celibate, they learn new ways to be intimate and have sex. If their partner turns out to be ableist, they find a new one; maybe someone in the disability community, but perhaps not. This storyline sells people short and renders the lives of disabled individuals unimpressively flat. Author Moyes and director Sharrock had the opportunity to challenge the dominant narrative that disabled people suffer from subpar, unfulfilling lives that are not worth living. Instead, they reinforced it by regurgitating the same antiquated plot and romanticized it for the pleasure of the abled consumer.

(Above) Will Traynor in "Wild Willy's Birthday Video" depicted playing soccer, skiing, wind surfing, and smiling back at the camera. (Sharrock, T., 2016, 0:35:59).

(Above) Will Traynor in the following scene, two years after the accident lying sick and exhausted in bed. (Sharrock, T., 2016, 0:36:43).

Loss is Real

Having said that, feelings of loss are valid, and it would be ignorant to suggest otherwise. Chronic pain is something that many people contend with on a regular basis. Being unable to afford necessary medical equipment, quality care, and in-home aids is common. Yet to only show this aspect of disability is both inaccurate and actively harmful. When writers and directors fail to show the realities of life as a person with disabilities, including those of both difficulty and joy, it perpetuates the idea that disabled people have lower quality lives. From there, it becomes easy to start thinking that maybe some disabled people are simply better off dead or otherwise removed from society. For their own sake, of course.

Four-minute clip of Will's explanation to Lou of why he cannot accept life as it is, even with her by his side.

(nobu kura 2016) (Sharrock, T., 2016, 1:28:02)

Why Will Believes Disability Renders his Life Worthless

In this scene, the characters spend their last evening together on a trip designed to change Will's mind about ending his life. They share a telling conversation in which Lou confesses her feelings for Will who, despite reciprocating them, chooses to move forward with his decision.

Listening to this conversation, it is obvious that it was written from an abled perspective because of how Will talks about his disability. Will acknowledges that his life, one where his needs are beyond satisfied, could be a good one; yet in the same breath he claims, "It's not my life. Not even close. You never saw me before" (1:28:48). He justifies this statement by mourning the loss of his ability prior to the accident. "I can't be the kind of man that just accepts this", he says. What "kind of man" does accept disability? A lesser man? A more selfish one?

Even worse, when Lou attempts to reason with him by saying she has "become a whole new person" because of him (1:29:15), Will responds with another self-discriminating comment. He replies, "That's why I can't have you tied to me. I don't want you to miss all the things that someone else can give you, and selfishly I don't want you to look at me one day and feel even the tiniest bit of regret or pity" (1:29:21). Clearly, when Will says "somebody else", what he really means is "somebody who isn't disabled". Almost everyone struggles with self-esteem, but the idea that disabled people are a burden on their abled partners is a falsehood that Will unfortunately buys into. Perhaps his argument would hold more weight if he could not afford expensive medical treatments and full-time caregivers, but this is not the case. Will's intensely privileged life means that he is not worried about the financial burden he might place on Lou, but the emotional one, suggesting that disabled people take a toll on those around them simply by existing.

He also mourns the loss of his sexuality, something Will believes he cannot experience with Lou as a disabled person (1:29:41). This assumed asexuality is just another example of a common harmful stereotype: that people with disabilities cannot or should not have sex. The sexuality of disabled people has long been suppressed, but we now know this idea is not true, and subscribing to it further infantilizes and dehumanizes people with disabilities.

Finally, Will reasons that he needs his life to end because "It's not going to get better than this. The doctors know it, and I know it" (1:30:42). Will believes that if his disability cannot be cured, then his life is not worth living. Evidently, living as someone who is disabled without the qualifier of still seeking cure, is not an option for him. This conveys the message that if a disability cannot be cured, then it should be eradicated; Or, that those who do not seek cure, instead accepting their disability and viewing it in a positive light, have somehow given up or aren't trying hard enough.

This awful conversation centers around Will's perception that his disability prevents him from being a good partner. It is highly suggestive of the fact that by pursuing medically assisted death, Will makes a brave and noble decision to sacrifice himself in order to avoid burdening the woman he loves. His parting gift to Lou, a large sum of money, effectively enables her to do the very thing he saw himself incapable of: living; living well, fully, and boldly. This is problematic to say the least.

"This is a brave ending. It’s too easy to do it the other way. We could all tell that story tomorrow. But this way… this is the more interesting way."

- Me Before You director Thea Sharrock

(Sperling 2016)

Community Response

If you were to google the phrase "reaction to Me Before You", you would find an endless number of articles, YouTube videos, blog posts, and tweets expressing outrage at the movie's gross portrayal of people with disabilities. The primary critique from the disability community is that Me Before You promotes the idea that life as a person with disabilities is not worth living. In response to the film, protests were organized at the movie's premier in the UK and across the United States, while the powerful hashtags "me before euthanasia" and "me before ableism" quickly sprung up on twitter. This provided a platform where people could call attention to the inappropriate message of the film and the impact it has on society at large.

Protests

Berkeley protest organizers Ken Stein and Ingrid Tischer embrace in a kiss while holding a poster with a photograph of their wedding. The photo is captioned, "Live Boldly?! We already do! Better wed than dead." Photo taken by Ted Friedman.

(Knobel 2016)

Actress Liz Car and other activists from Not Dead Yet UK protest the film at the London Premier. They hold up a large banner reading "Me Before You is not a romance. It's a disability snuff movie, giving audiences the message that if you're a disabled person, you're better off dead. #LiveBoldly? We already do! #MeBeforeEuthanasia." Photo taken by Ian West.

(Powell 2016)

Tweets

"#MeBeforeEuthanasia #LiveBoldly? We already do! #MeBeforeYou Enough film, drama &docu makers. When are you going to reflect our real lives?"

@BnsJaneCampbell

"People say books/film don't change how society treats #disability- "Rain Man" made people assume all Autistics were savants. #MeBeforeEuthanasia"

@RebeccaCokley

"When disabled people are suicidal, we should be treated for it like a non-disabled person would be, not just killed #MeBeforeYou"

@notdeadyetuk

"What do you do when you have love, wealth, health, and a hi-spec wheelchair? #LiveBoldly or kill yourself? #MeBeforeEuthanasia"

@octoberpoppy

"Sam Claflin said he lost 40lbs for #MeBeforeYou on @GMA so his disabled character would seem "fragile and frail." STOP. #MeBeforeEuthanasia"

@claire4est

"#LiveBoldly. @WarnerBrosSG Romanticizing suicide harms people with spinal cord injuries & risks suicide contagion as acts of love. Cancel it."

@ndycoleman

"#mebeforeeuthanasia out with bf for anniversary using my crutches and I'm still a romantic being who isn't a burden!"

@savourydeets

"#MeBeforeYou Could you make disabled people feel any more worthless? #MeBeforeEuthanasia"

@bigchairbear

But Isn't It Just a Movie?

It might be easy for viewers to get caught up in the character's genuine love for each other, the beautiful scenes, and Emilia Clarke's wonderfully expressive eyebrows without registering some of the more sinister beliefs about disabled people that the film reinforces. As I did research for this topic, I came across more than a few comments expressing their distain for what was in their eyes, an overly-critical response to Me Before You. Many people used the arguments of "you're being too sensitive", "it's just a movie", or "you can disagree but it's their choice". Even if this film represents one case amidst a sea of others, even if Moyes was influenced to write the story from personal experiences with disabled family members, even if it was intended to show the difficulties of being a disabled person in a world for abled people, even if sometimes people with disabilities feel depressed and consider the possibility of ending their life, even then, the messages it conveys are clear and single-sided. To blatantly dismiss people's concerns about its implications as a "fundamental misunderstanding" as Moyes has done (Siegel 2016) is simply inadequate and insensitive. According to the author, it is disappointing that "people make a protest when they haven’t either read the book or seen the film... It has big themes in it that are very easy to make quick judgments on." (Siegel 2016). Clearly, lived experience as a disabled person doesn't count.

The phrase "nothing about us without us" truly applies here. This storyline could have been greatly improved by consulting with the disabled community and incorporating the input of real people who have lived experience being disabled. While it is worth celebrating a disabled character being a romantic lead in a mainstream movie, writers and producers need to be held accountable to higher standard. We need films in which the character’s identity is inclusive of their disability, not flattened by it.

A lego man using a wheelchair smiles with a baby in his lap while a woman stands to their right holding a baby bottle.

(Acuity_Design 2016)

Something to Think About

I would like to leave you with a quote from David Bekhour, who remarked that Will's choice to end his life is "a crock of shit" because contrary to popular belief, "people who use wheelchairs don't actually want to kill themselves" (Bekhour 2016).

"What might make life worth living for someone who uses a wheelchair? Truly, it’s a difficult question to answer. Maybe cheese, if you really, really, really enjoy cheese. Yoga pants. A bold Cabernet. Amazon Prime Now. Laughter. The ocean breeze filling your lungs. Wanting to start a family. An ambition to contribute something meaningful to the world.

Oh, and love. The deepest human connection that makes you feel seen like you’ve never been seen before. Yeah, love is enough too — even for people with disabilities."

-David Bekhour 2016

Sources

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RebeccaCokley. (2016, June 3). People say books/film don't change how society treats #disability- "Rain Man" made people assume all Autistics were savants. #MeBeforeEuthanasia [Tweet]. Retrieved from https://twitter.com/RebeccaCokley/status/738867392189726720

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savourydeets. (2016, May 25). #mebeforeeuthanasia out with bf for anniversary using my crutches and I’m still a romantic being who isn’t a burden! [Tweet]. Retrieved from https://twitter.com/savourydeets/status/735551660253184000

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