This post is a very lightly edited version of the short talk I gave at the Doing Difficult Research Symposium held at the University of Warwick on July 13, 2018. I participated, via Skype, on a panel on ‘personal entanglements’ in research. My talk was a personal reflection on doing intensely personal research, suggesting some ways in which such research prompts more nuanced ways of thinking about approaches to and the ethics of research on vulnerable communities. I post it here in the spirit of opening discussion around the particular difficulties of some kinds of research, including those that involve emotions and intimacy.
Hello. I want to start by acknowledging how wonderful I think it is that this type of workshop is happening and how much I wish I could be there in person to take part in all of the other sessions. This kind of discussion about the difficulties of doing certain types of research is really necessary and sustaining. I’ve been reading a lot lately about doing research that is intensely personal, that draws on or is directly about personal experience, but that literature is still fairly thin and to have these types of conversations is important. I often cite Denise Turner, a Lecturer in the Department of Social Work and Social Care at the University of Sussex, who has written about doing research you can’t talk about – the kind of research that, as she puts it, “remains almost unmentionable within both academic and social discourse” (Turner 2016, 74). Turner’s own ‘research you can’t talk about’ is on the experiences of parents whose children died suddenly and unexpectedly, and it developed out of her personal experience of the sudden, unexpected death of one of her twin sons, when he was 19 months old.
My own recent research has been on the relationships between recordkeeping and grief; on recordkeeping as a kind of grief work, a meaning-making process, and a way of continuing a relationship with the deceased. Like Turner, I came to my work through personal experience. In 2012, when I was eight months pregnant and nearing completion of my doctoral dissertation, my second daughter was stillborn. In the first few months after her death, it was nearly impossible for me to work. I was in shock. I couldn’t concentrate or think clearly. My research seemed stupid and unimportant.
Since stillbirth remains a fairly ‘taboo’ subject, bereaved parents often report feeling silenced, unable to talk about their loss; they tend to feel isolated and misunderstood. The grief that follows stillbirth has been described as “disenfranchised grief” because it often goes unrecognized in society – people who haven’t experienced this kind of loss have a hard time imagining the depth of grief that parents feel (Lang et al. 2011). This was certainly my experience, and to cope with it, I did what many other parents in my situation have done: I turned to the Internet. There, I discovered a community – in fact, several different communities – of parents grieving losses like mine.
The types of online communities I’m referring to form around particular websites, and also through linked blogs, in Facebook and Reddit groups, and around particular hashtags on twitter, Instagram, etc. One example is the website of the MISS Foundation, a not-for-profit founded by the mother of a stillborn baby that hosts a number of private, password protected and moderated forums. Other communities are less private though – they can be found and accessed by anyone using a search engine; in these different spaces, parents get support, share stories, circulate photographs; they remember their pregnancies and their hopes and dreams for the lives they thought their children would live.
What began for me as very personal eventually developed into a professional interest. I began to be interested in the type of memory work happening in these communities. I think it’s really important to be clear though that this professional interest was associated with a sense of professional desperation: this wasn’t an opportunistic detour in my research agenda. Rather, it was the only way I could continue to function in my professional capacity. In the publish-or-perish, perpetual work-cycle environment of academia, I knew if I didn’t get back to work, start presenting at conferences and writing journal articles, I would be left behind really quickly, and probably for good, but like I said, my dissertation research felt meaningless: all my attention seemed to need to go to my own grieving and to day-to-day survival.
A few months after my daughter’s death, however, a CFP for a major conference in my field was issued with a focus on “community archives.” I proposed a paper on online grief communities as a particular type of aspirational archive. The paper was accepted, and I flew to the conference, stood in a packed room and told my story. It was the quietest conference session I’d ever attended. No one moved. I talked about the afternoon when I realized that I hadn’t felt the baby move in a long while. I spoke about hearing the words, ‘we can’t find your baby’s heartbeat,’ I described feeling desperate for support and finding it online, and then I spoke about the new scholarship I was discovering, on online grieving, on grief and material culture, on archives of the imagination. I had conceived of this talk as a one-off. Something I could pull together in the short term before I got back to my old work, but as I spoke to that quiet and attentive room I knew there was something in it, something important. There were not very many questions after the talk, but several people came to talk to me, alone, after the session; they thanked me for sharing my story. They told me the work was important.
Since that time, I did manage to finish my dissertation (a whole other story). And I’ve continued the work on conceptualizing the relationships between recordkeeping and grieving. In the short time I have left, I want to outline some of the ways in which working on such an intensely personal research agenda has been rewarding as well as some of the ways in which it is a continuing struggle. Since there is not a lot of time, I’m going to do this in a very abbreviated matter – suggesting more than explaining – but I hope we can return to some of this in the discussion period to follow.
First, the work can be immensely personally rewarding. There is always someone who comes up to me after a talk and thanks me – so sincerely – for talking about things no one wants to talk about. It feels good, sometimes, to play this role in my community: to speak of love and loss in a field that can get entirely bogged down in how to create functional classification systems! But it also takes an enormous toll. We are a small field, and it is never easy to stand in front of a room and tell my story – and it is somehow impossible to talk about my research, which is pretty far out in the left of my particular field, without explaining a bit about how I got here. Last month, I presented at a conference attended by many of my students; I had to really think about how much I wanted them to know about me, what I wanted them to see when I next stood in front of them in class. I edit and edit and edit to mediate my discomfort at revealing personal information and also the audience’s discomfort at having it revealed to them. I don’t know how to do this research without making myself vulnerable and I am constantly deciding that I’ve had enough, I can’t do this to myself anymore, and then I keep doing it anyway – it sometimes feels like a compulsion rather than a decision.
I came at my research kind of backwards…I observed and participated in online communities for a long time before I started to write about them. As a result, I have a different kind of relationship to the subjects of my study; I have been and am still one of their group. This has led me to think about how to use autoethnographic methods and methods that incorporate my perspective as not only an observer, but a participant, an experiencer. I think in many disciplines, this is increasingly common but in the archival field it has been practice for nearly two hundred years for archivists to adopt a neutral and objective stance, to fashion themselves as impartial custodians of records; we don’t get involved. So my work is sometimes looked at as contravening accepted theory and methodology. And sometimes I wonder too: is this just self-indulgence? Should I really be talking about myself this much? Is it even intellectual? I get the feeling sometimes that people are scared to question me or engage critically with what I’m saying in the face of my personal experience, because of their fear of engaging emotionally or a concern about being – or being perceived as being – insensitive. I’m frequently uncertain about the value of the work, about its impact, despite assurances from several key figures that it is moving our field in an important direction and despite having recently received competitive funding to continue the research.
Being a participant-experiencer in the communities has also caused me to think about the ethics of researching online communities. Under Canada’s policy on behavioural research ethics, I’m not required to seek approval to study the communities I’ve been talking about. The information parents share, the communities themselves, are publicly available – no password is required to access the sites, anyone can stumble across them or find them using particular search terms. For the parents, there is no “reasonable expectation of privacy,” and so, I don’t – according to my ethical review board – require consent to study them. Despite this, it is viscerally apparent to me – from my perspective as a participant– that this isn’t the right standard against which to test concepts of public and private – for research purposes – in these communities. Here, I’ve been influenced by work by Aimee Morrison (2011), and most recently by T.L Cowan and Jasmine Rault (2018), on intimate networked publics – these types of ostensibly public spaces that operate according to particular community norms to create safe spaces. A significant part of my research is stalled indefinitely because I have determined that even though it is not required by my ethics board, there is no ethical way to proceed without gaining informed consent from those who participate in these communities, and there is – in fact – no way to go about gaining that consent.
My new perspective of the role of grief in recordkeeping has caused me to think differently, too, about some of my past research. I spent some time working with the poet Sylvia Plath’s archives for my dissertation, and like other researchers before me, wrote extensively about her mother, Aurelia Plath’s scheming and corrupting influence on her daughter’s archives: but what if we were to think of Aurelia’s actions in the context of her experience of bereavement – does the kind of “interfering” work she performed on the archive appear different if we think of her using her daughter’s records as a means of understanding and integrating her sudden and traumatic death? [ETA: This is a question I’m exploring in a separate but related project funded by the UBC Hampton New Faculty program]
We might think of Aurelia Plath using her daughter’s records as an example of what grief counsellors call “continuing bonds” (Klass, Silverman, Nickman 1996; Steffen & Klass 2017). Recognizing that old models of grief work that advocated severing attachment to the dead – what we colloquially refer to as moving on – did not reflect patients’ lived experiences of grief, those who work and research with the bereaved talk about the different ways in which grieving involves negotiating new ways of being in the world and new ways of carrying on a relationship with our lost loved ones. I have come to realize that whatever else it is, my research is – at its centre – a means by which I try to continue the bond with my own dead, my tiny daughter whose death changed everything. In respect of the time limit, that’s where I will stop for now – thank you, again, for making a safe space to talk about this research that can’t be talked about.
Cowan TL, Rault J (2018) Onlining queer acts: digital research ethics and caring for risky archives. Women and Performance: A Journal of Feminist Theory, vol. 28, no. 2, https://doi.org/10.1080/0740770X.2018.1473985
Klass D, Silverman PR, Nickman S (1996) Continuing bonds: new understandings of grief. NY: Routledge.
Lang A et al (2011) Perinatal loss and parental grief: the challenge of ambiguity and disenfranchised grief. Omega – Journal of Death and Dying, vol 63, no. 2, https://doi.org/10.2190/OM.63.2.e
Morrison A (2011) ‘Suffused by feeling and affect’: the intimate public of personal mommy blogging. Biography, vol. 34, no. 1, 10.1353/bio.2011.0002
Steffen EM, Klass D (2017) Continuing bonds in bereavement: new directions for research and practice. NY: Routledge
Turner D (2016) ‘Research you cannot talk about’: a personal account of researching sudden, unexpected child death. Illness, Crisis & Loss, vol 24, no. 2, https://doi.org/10.1177/1054137315587642