The Last Taboo? Wanting To Die
For decades, disability activists have been preoccupied with breaking taboos and preconceptions of disability. They have, rightfully so, protested in front of government buildings demanding equal rights, equal pay, proper accessibility and humane care facilities. They have tied themselves to walls as a forceful attempt to be recognized, to be seen, they have obstructed roads to show how cities are not inclusive, and screamed with their fists in the air: ‘nothing about us, without us!’. They show us that people with disabilities have sex (I hope I am not the first one to tell you this), people with disabilities have beautiful bodies and they demand from us to always be aware of the intersection of analysis and representation between disability and sexuality, race, class, gender and so on.
I have been interested in these activist movements, and busy within the field of disability studies, for a few years now. The amount of openness, daring thought and provoking conversation is remarkable and inspiring. Despite this seemingly endless inclusivity, there is one taboo that seems stuck, unable to be included in the stream of thought: the will of a disabled person to die.
Last month, the film Me before you (Thea Sharrock, 2016) premiered, accompanied by many protests. This film, based on the novel of the same name by Jojo Moyes (2012), centers around Will, who becomes paralyzed from the neck down after an accident. He hires caretaker Louisa, and they fall in love. What she does not know is that Will had planned on committing euthanasia, and finally does. However far opposed the filmmakers and disability activists are in the heated debates about this film, they agree on one thing: this is a film with no happy ending. As you might have read, there were many articles written by disability activists and theorists that were outraged, saddened, claiming that ‘disabled life is presented as a bad choice’ (The Guardian, 2016). I do not have any difficulties arguing for the highly problematic aspects of this film when it comes down to representation. The lack of positive depictions of people with disabilities in films, or characters/actors with disabilities where the focus does not lie on disability, is rare, and therefore concerning. When a Hollywood film decides to portray a disabled character (by a non-disabled actor) and the film ends with the character deciding to commit euthanasia because he finds his life no longer worth living, that is problematic. Especially considering the lack of representation of disability in mainstream cinema.
Following Susan Sontag’s statement, ‘the metaphor and myths, […] kill’ (Illness as a metaphor, 1991:99), I cannot but agree with the disability activists. But this is not the point that I am trying to get across in this article. The lack of empathy for someone that wants to die while s/he is not unbearably suffering or terminally ill, the dismissal of the call for help from that person, the denial of that act of taking control over your life and death, is what distresses me. In these articles written by disability activists, it almost seems as if a person with a disability cannot make that decision autonomously, and should ‘just’ (try harder to) enjoy life (Buzzfeed; WISN-ABC, 2016). Living remains the norm. Moreover, the thousand tweets that were sent with the hashtag #LiveBoldly (Twitter, 2016), set a norm for people with disabilities that that is the way to live your life. But what if someone wants to die?
In “Deciding on Death: Conventions and Contestations in the Context of Disability” (2007), Magrit Shildrick writes about euthanasia by setting out the debate in relation to disability. She writes that disability theorists and activists are critical of the possibility of euthanasia or PAS (physical assisted suicide) for people with disabilities while it “reflects the majority view that a life with disability is inevitably less worthwhile than a life without it” (211). If this would be a view that is widespread in society, it promotes a hierarchy of human values in which people with disabilities might be better off dead than alive (212). This is exactly what the disability activists feel: allowing euthanasia for people with disabilities is a direct attack on their life. It shows – in their view – that their lives are not good enough to be lived (Aleteia blog, 2016). Permission to commit euthanasia is viewed as discrimination of the person with a disability since his/her life is valued as unworthy. Even though this is a subject-matter of great concern, the idea still remains that if a person wants to claim autonomy over their own body, they have to be taken seriously when a person has no wish to continue living.
The problematics of wanting to die lie with what we think such a decision is based upon. Why do I find my life not worthy of living anymore? What are the circumstances that have led to this decision? When it concerns people with disabilities, disability activists have a clear cut answer: society is not inclusive enough, society degrades a person with a disability to the margins. Society tells a disabled person: your life is not worth living. But a wish to die is more complicated than that. The ways disability activists and theorists (including myself) are involved in changing these perspectives, creating better circumstances for everyone, a disabled or non-disabled person can still wish to die. Taking away this possibility by setting a norm to #LiveBoldly is too imposing.
Let us think about this seemingly autonomous decision of committing euthanasia. Margrit Shildrick discusses the conflicts between bioethicists and disability theorists regarding euthanasia and physician assisted suicide (PAS). Her aim is to reconsider some of the issues that drive this often highly polarized debate around the question of end of life decisions involving disabled people (210). She focuses on the concept of autonomy that already reveals some of the most important aspects of this debate. The general view on autonomy is that it involves freedom and rationality (210), but as Shildrick argues rightfully, this conceptualization is based upon normative parameters. The term autonomy implies a self-regulatory capacity or self-control. But to what extent is anyone capable of doing this? According to Judith Butler, autonomy is a necessary illusion (Precarious Life: the Power of Violence and Mourning, 2004). Butler distinguishes autonomy and “relationality” to point out that bodies are limited in their claim for autonomy. She writes:
Although we struggle for rights over our own bodies, the very bodies for which we struggle are not quite even only our own. The body has its invariably public dimension. Constituted as a social phenomenon in the public sphere, my body is and is not mine. Given over from the start to the world of others, it bears their imprint, is formed within the crucible of social life; only later, and with some uncertainty, do I lay claim to my body as my own, if, in fact, I ever do. Indeed, if I deny that prior to the formation of my "will", my body related me to others whom I did not choose to have in proximity to myself, if I build a notion of "autonomy" on the basis of the denial of the sphere of a primary and unwilled physical proximity with others, then am I denying the social conditions of my embodiment in the name of autonomy? (26)
It might seem weird to argue in favor of euthanasia by using a statement that underlines the problematics of autonomy. This relationship to the other that Butler sees as “a tie” (22) constantly challenges our need for autonomy. It is therefore relevant to ask to what extent we have autonomy. However, the illusion of autonomy is a necessary good in order to feel as a self (24). Although we are tied to others that form us, we make decisions every day. This should not have a normative parameter that only involves living. It should also include a wish to die. Why would the decision of wanting to die be taken away from us? Why should someone try harder to enjoy life when s/he does not want to anymore? Why can someone not decide to live or die? We cannot distinguish whether the world imposes a certain view on us, or if we create a life standard ourselves. I guess it is a bit of both, and more. At least it should not be an argument against a wish for someone to commit euthanasia, if of course this is handled with professionally and with dignity. ‘The body is not a battlefield’ (Sontag, 180), and we should respect the ways people want to deal with their body and their life and death. Regardless of disability, illness, or age; all requests to end life should be dealt with in earnest.
I want to make no claim or give a final answer that exempts protecting the interests of all equally. What I hope to accomplish with this article is that we realize that whatever form of life we choose, death is always part of that. I wish that within the disability movement there would be some small place to start talking about such topics. I aim to challenge any social structure that disproportionately constrain people. We should acknowledge, as Shildrick writes, that some ‘choose or assent to death, whilst at the same time recognizing that for some, disability may be the condition that sustains the move into a very different form of affirmative becoming’ (Shildrick, 218). Taboo or not, no one has to live boldly if they wish otherwise.
Ymke Kelders is one of the editors from the grid, and works as a researcher and teacher at the University of Applied Sciences within the research group Community Care. She taught the course ‘Cultural Analysis of Disability’ (UvA, NICA), is teaching a research course and is going to teach a course on ethics. She’s a volunteer at the youth department of the NVVE (Dutch organisation for euthanasia).
Aleteia blog, < http://aleteia.org/2016/06/02/me-before-you-dear-hollywood-why-do-you-want-me-dead/ > February 6, 2016.
Butler, Judith. Precarious Life: The Powers of Mourning and Violence, London: Verso, 2004.
Buzzfeed, < https://www.buzzfeed.com/arianelange/me-before-you-backlash-disability-rights?utm_term=.aeeYwKEg3x#.ijAgbd1klv > June 9, 2016.
Shildrick, Margrit. ‘Deciding on Death: Conventions and Contestations in the Context of Disability. Bioethical Inquiry, n.5, p.209-219, 2008.
Sontag, Susan. Illness as Metaphor. Penguin Books, London, 1991.
Twitter, #LiveBoldly. < https://twitter.com/search?q=%23liveboldly&src=typd >, June 28, 2016.
The Guardian. < https://www.theguardian.com/film/2016/may/22/me-before-you-film-love-disability-thea-sharrock-sam-claflin > May 22, 2016.