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Sociology has a strong tradition of critical thought and advocacy for social change. It’s why studying Sociology appealed to me and felt right to adopt the discipline as my academic home.
I study assisted dying, a hot topic in New Zealand politics right now as Parliament debates the End of Life Choice Bill ahead of the third vote. My PhD interview participants were dying people who wanted the choice of assisted dying to be available to them. Having heard their stories of suffering and the bad dying they anticipated, I couldn’t help but feel I owed it to them to advocate for them. Thinking critically felt insufficient. Action needs to follow thought if any social change is to be forged.
The month after I finished my data collection I had to the opportunity to put in a written submission, and later to speak to that submission, to the Justice Select Committee on the End of Life Choice Bill. Alongside this, I wanted to publish some media articles sharing my participants reasons for wanting an assisted death and to encourage others to share their views with the Justice Committee. Participatory democracy is a good thing, right?
My supervisors were initially relatively supportive, making sure I was going to be clear that I hadn’t completed my analysis. However, when I told an Emerita Professor what I wanted to do, she was shook. She discouraged me from publishing any media articles using my data because what I wanted to say was not fully analysed, peer reviewed and I might compromise future publications. My supervisors were cautious but for different reasons. Probably rightly so. Was I, only one year into my thesis, ready to become the go to pro-euthanasia academic for media comment? Who was I to speak as an authority on this hugely complex issue? What if I ‘came out’ as pro and it backfired?
This is the blurry line between researcher and advocate.
But what about the ethical responsibilities to my participants? After all, one of the overarching objectives of this thesis was to bring the views of people approaching the end of life into the New Zealand debate on legalising assisted dying because there was a paucity of their views in research and public discourse.
There is the complicating factor that I am working in a controversial field of assisted dying. It’s controversial because for some people, such as those with disabilities, the right to die “undermines the position of disabled and vulnerable members of our community and poses significant risks to them” Paula Tesoriero (Disability Rights Commissioner for the New Zealand Human Rights Commission). How can I advocate for one right that might disadvantage an already vulnerable group? How do we weigh the rights of some people against others? I don’t have the answers for these questions and it’s certainly beyond the scope of this blog.
Most people I tell about my thesis, including media and my PhD participants, ask me what my position is. To the attuned, the language I choose to use to describe assisted dying suggests my position anyway. Quite contrarily, whatever view the person I’m speaking to takes, I will often suggest other ways of seeing the issue. For the media, I tend not to state my views explicitly but suggest that based on my reading of the international data, I think that an assisted dying system can be implemented sufficiently safely. This feels like a good and safe stake to put in the ground (although still contestable according to other readings of the same data). I acknowledge that the risk of people feeling the need to end their life sooner than necessary out of perceived or actual pressure or due to insufficient care worries me, as it did my participants. What I don’t often say is that the normalisation of assisted dying doesn’t worry me greatly, because assisted dying is “the formal manifestation and legitimation of a cultural desire to shorten the dying phase” (Richards & Krawczyk, 2019, p.1). Assisted dying is a technique to manage the risk of bad dying in what Beck (1992) called ‘risk society’, where individuals are exhorted to invest a great deal of energy in avoiding potential ‘risks’.
For participants, sharing my views was an important consideration because of how it affected my relationship with them, how much they trusted me and shared with me. This led me to speak honestly with participants that I think there should be a regulated, robust system for certain people in particular circumstances. Sometimes I shared my concerns and other times I shared them as others’ concerns.
More than that, I don’t think I can separate my own views on assisted dying from my research. Disentangling subjectivity and objectivity is complicated due to one’s embeddedness in the context being studied. As Bourdieu articulates:
How can the sociologist effect in practice this radical doubting which is indispensable for bracketing all the presuppositions inherent in the fact that she is a social being, that she is therefore socialised and led to feel “like a fish in water” within that social world whose structures she has internalised? How can she prevent the social world itself from carrying out the construction of the object, in a sense, through her, through these unself-conscious operations or operations unaware of themselves of which she is the apparent subject (Bourdieu, 1992, pp. 235-236).
On the other hand, questioning common sense views of the world, including my own views, is a challenging but necessary task.
Not to share my views feels like a disavowal of who I am and what I stand for – bodily autonomy. Having a philosophical grounding in Sociology gives me the courage to advocate for my participants and the issues we feel strongly about. Having said that, I notice my views do fluctuate depending on what’s happening and who I am talking to. I feel torn between doing right by my participants and respecting people’s concerns about assisted dying. In advocacy and research, it doesn’t always feel like there’s room for uncertainty. This ambivalence about advocacy emerges as a product of my PhD data collection and interactions with people from all spectrums across the assisted dying debate.
I share this reluctance because I think that we should make ourselves professionally and personally vulnerable by sharing our experiences of the ambivalent entanglements between the research we do, our lives and our values.
Jessica Young is a PhD Candidate, at the University of Otago. This blog post was runner-up in the 2019 Student Blog Writing Competition
