I Won’t Waste Money On ‘Me Before You’, But I Support Dying With Dignity

“Rights not tragedy!” cried the small but colourful crowd of people with disabilities (and their allies) gathered at Melbourne’s Jam Factory cinema last night, convincing punters to boycott the film Me Before You.

If you are still free of Me Before You spoilers and wish to remain so, I congratulate you on a remarkable commitment to unspoiled viewing, and advise you to stop reading now.

Despite that warning, I will admit upfront that I have not seen the film, and have no intention of doing so. I had little interest in it before the wave of disability activist outrage crashed all over the internet, and in solidarity with my disability community, I will happily deprive the filmmakers of my hard-earned cash.

That said, as a person with a potentially degenerative condition, I also find myself in personal conflict with the blanket anti-voluntary euthanasia rhetoric expressed in much of the global activism against the film.

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The Problem With Me Before You

Pop culture has a way of developing tropes that both reflect and inform our understanding of the human experience, and it is the province of lazy writers to fall back on these when original insight escapes them.

Me Before You appears to be a confection of tropes. From the trailers and summaries, I spot Cinderella (young woman rescued from hardship by a handsome man and his money), Manic Pixie Dream Girl (sad man falls for quirky girl whose sole narrative purpose is cheering him up) and — the source of the disability activist explosion — death as a preferable alternative to disability.

In isolation, I don’t find the idea of this film offensive. The death of the male lead, Will Traynor (spoiler!), is reportedly based on a real incident where a former athlete chose euthanasia over life with quadriplegia. Depictions of grief and depression over sudden loss of function are realistic (I speak from experience), and if this were just one narrative in a sea of many, it would likely not have sparked the reaction it did.

Unfortunately, the idea that death is preferable to disability has been playing like a skipping record for decades, perhaps centuries, while mainstream stories of disabled people who #liveboldly (Me Before You’s unfortunate tagline) are thin on the ground.

This reflects the dire lack of disabled people in powerful creative roles within the arts. The lack of diversity inevitably creates a one-note narrative; an able-bodied imagining that extends as far as bereavement, but rarely looks beyond. The result is a relentless reinforcement of the perceived tragedy of disabled lives that impacts negatively on self-perception. Protestor and activist Phineas Meere put it starkly: “When I was younger I had suicidal thoughts [and] thought I was worthless because of my disability. If I had seen this film then I may have killed myself.”

Representation matters. And if you struggle to understand why, please take two minutes to watch this clip.

Most kids take for granted that dolls and action figures are shaped vaguely like themselves, yet for a child living in a representational vacuum, the positive experiences are rare and overwhelming. The negative ideation starts young.

Disabled lives matter, and we deserve much better.

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Fighting For Our Rights In Life As Well As Death

“Rights not tragedy” was the cry of the Jam Factory protesters (the self-proclaimed “Crip Army”), yet they were paradoxically opposed to legislation supporting the right to die.

I fully support the Crip Army’s objections to Me Before You, but that’s where my support ends, because this particular right is one that I will fight for.

Anti-voluntary euthanasia sentiment in disability activism originates with the Not Dead Yet movement, popularised by Silent Witness actress Liz Carr. The position is summed up well by Jam Factory protest organiser, Jax Jacki Brown, here. I recommend reading her entire article as it’s an insightful take on representation, but it was this idea that gave me pause:

“Until society has the capacity to provide all the services which would enable people with disabilities to participate fully and equally in society, then a choice for assisted dying is never truly voluntary.”

My disability is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, and even if society threw millions of dollars of support at me, so long as I have this illness, I will not be participating fully or equally in society. The symptoms simply do not allow it, and researchers are years, maybe decades, away from developing treatment. ME/CFS also has the potential to become degenerative, with very severe sufferers existing in a state described as “living death” in which they do not eat, speak or leave their beds, struggle with basic cognition, are paralysed much of the time, and live in intense ongoing pain.

This is possibly my future, and I damn well want the right to put a stop to it if my personal threshold is reached and enough becomes enough. The alternative, to me, would truly be a tragedy.

Dr. George Taleporos, Executive Officer at Youth Disability Advocacy Services Victoria, who himself has a degenerative condition, believes that “the principle of choice and control should still apply in such a way that our lives are valued along with our choices in life as in near death.” The late Andrew Batavia, who helped draft the Americans with Disabilities Act, felt opposition to assisted suicide “is a new form of paternalism that is inconsistent with the anti-paternalistic philosophical roots of the disability rights movement.”

I agree. We should continue fighting tooth and nail for equity in life, to make death the less preferable option, but we should not have to wait for governments to meet our needs before giving ourselves permission to exert control over our own deaths. If we must wait for true equality before considering ourselves capable, we may be waiting forever. As it stands, if we lose the physical capacity to die without assistance, our carers and medical practitioners are legally obligated to keep us alive beyond any desire we might hold. To me, this represents an ultimate form of government control.

While requests for assisted suicide are rising in countries where it is legalised, and a clear conversation about safeguards needs to be rigorous and ongoing to prevent abuses, opposing the entire idea of dying with dignity on the basis that the world’s Will Traynors cannot be trusted to know their own minds seems to me a manifestation of ableist infantilisation sneaking into disability activism.

I demand the right to live boldly. To access. To the development of effective treatment. To services. To positive representation. To the palliative care of my choice. But I also demand the right to die with dignity if that is my personal decision.

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If you feel the need to talk to someone after reading this piece you can contact Lifeline 24 hours a day on 13 11 14.

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Naomi is a freelance writer, presenter and community television producer with a background in disability activism and feminism. She is currently editing her first short film.