Reflecting on baby loss, hope, and injustice in research

Nearing the end of the year makes most of us reflective. What sort of year have we had? What hopes do we have for the next? Have we achieved all that we wanted to, or thought we might, at the beginning of the year? How might what we have worked on or developed throughout the year roll into the next, and relate to our future work?

To reflect, then, work-wise 2018 has been a relatively positive year for me. Our key ESRC-funded project, Living Life to the Fullest, which seeks to forge new understandings of the lives, hopes, desires and contributions of disabled children and young people labelled with ‘life-limiting’ or ‘life-threatening’ impairments, has gone from strength to strength. We have established a vital Co-researcher Collective of dynamic young disabled women – who I love working with – that is co-leading the project. We have presented collaboratively at conferences. Together, we have made a short documentary film about the power and meaning of co-production as necessary research politics and practice when working with marginalised young people. We have won ESRC Festival of Social Sciences funding and subsequently hosted a successful event led by the Co-Researcher Collective in Sheffield. We have co-authored exciting articles about co-production with young people and the meaning of posthuman theory in short/er lives (Liddiard et al. in press; Aimes et al. forthcoming). We have also co-written and submitted a book proposal. And, lastly, we have spent a lot of time building strong relationships with external partners and community organisations that will enable us to continue our project next year with gusto.

Outside of Living Life to the Fullest, I have also succeeded in other areas of my academic and activist work. My book – The Intimate Lives of Disabled People (Liddiard 2018) – has received a really positive reception. This has been from other scholars who have read, cited and reviewed it (see Bahner 2018); from organisations that have been in touch to tell me how it has contributed to their provision and thinking around the sexual and intimate lives of disabled people; and most importantly, from disabled people, who have tweeted, messaged or emailed to say it is reflective of their own experiences. Excitingly, next year Routledge is to release a second edition in paperback.

Personally, however, this year has been a very difficult one. My partner and I have lost two babies – in the space of a year that has felt like a lifetime. Babies that were loved and wanted and cherished far before they were even conceived. Babies for whom we had great hopes, dreams and wishes; personhoods actively constructed from the moment we saw those bright pink lines (Layne 2000). Babies we thought – and felt – were growing and thriving until scans revealed those dreaded words: “I’m so sorry, I can’t find a heartbeat”. Babies whose only photos are grainy 12-week scans, taken when they’ve already died, but still proudly in frames by my bedside. Babies who will always be, but never really were. Babies for whom we never got the chance to build a cot but instead a memorial bench. Babies for whom my love will last a lifetime; as Jeffries (1998) reflects:

‘I will remember you in so few ways it hurts. Because I never knew you. And yet you were real and alive in me. I wish I could hold on to something about you. I wish I could show everyone how real you were to me. So then you would be real to them. And then they would know, as I do, that we’ve all lost someone special in you’.

Something I have learned in our project Living Life to the Fullest, which inherently relates these experiences, is that longevity of life often bears little relation to its meaning, to yourself or to intimate others: loved ones, family, and friends. Short lives, regardless of how short they actually may be, are often vital, desired, and valued – powerful relations into which love and intimacy fall like loose stones off a cliff. Yet, culturally, short lives are devalued: considered “lesser lives”. As Garland-Thompson (2012: 351) argues, ‘…a life trajectory that is unpredictable or uncontrollable is anathema to our liberal modern ethic of self-determination, design, and freedom’. In Living Life to the Fullest, when hearing the stories of young disabled people through arts-informed and narrative methods, we seek to disrupt such dominant neoliberal-able (Goodley 2014) fantasies surrounding lifespan, quality of life, and productivity as the root of human worth.

Importantly, as a project, Living Life to the Fullest has a focus on futurity embedded in an affirmative politics of disability – acknowledging disability as both valued and valuable: that which can bring new perspectives to a world obsessed with reifying normalcy and eradicating difference. Yet, death, dying, fragility and grief remain important aspects of our project, both for disabled young people labelled with life-limiting and life-threatening conditions and their families. My interviews with parents who are raising children they may outlive, or parents who have already lost their children, are interwoven with my own recent experiences of loss. Rather than add to my emotional labour as a researcher (Dickson-Smith et al. 2009; Woodby et al. 2011; Davidson 2011), my own experiences embed a sense of understanding and solidarity with other parents. I am hearing their stories in new ways, through a sort of ‘collective affinity’ (Kafer 2013). Their stories take on a new meaning for me as I work my way through an aching grief that doesn’t seem to abate.

As a side-note, another thing I have learned is how incredibly common baby loss is, but how rarely it is ever spoken about, particularly in employment contexts (in my case, the Academy). According to the NHS, 1 in 4 pregnancies end in miscarriage. On losing my second baby, I was purposefully open with colleagues about why I was taking time away from work, why I couldn’t attend that meeting, event or symposium, and why I might not be back for a while. Being so open invited unexpected responses. While the majority of responses to my news were supportive and full of care and concern, I was deeply surprised by just how many colleagues got in touch to say: “It happened to me” (see Bansen & Stevens, 1992). A couple of women, who I don’t work particularly closely with, shared with me recent experiences of multiple miscarriages this year alone. Silent acts of solidarity and care; private messages that have punctured the loneliness that can accompany grief, particularly in the context of baby loss. I started to understand my openness as a feminist and political act: a means to expose our cultural struggles with death, loss, and the ‘failure’ of the body as it relates to pregnancy loss (see Layne 2000); to normalise what is a desperately common experience for many people; and to legitimise the (short) lives of my babies who I will sadly never get to know. Inadvertently, as a disabled woman, this is also identity work: publically foregrounding a maternal subjectivity that is routinely denied to disabled women (Liddiard 2018; Thomas 1997).

This act of ‘telling’ also exposes the problematics of the Academy and research as spaces devoid of emotion. In reality, our own lives and emotional selves are typically embedded in our scholarly practice; as Dickson-Smith et al. (2009: 61) suggest, ‘undertaking qualitative research is an embodied experience and that researchers may be emotionally affected by the work that they do’. At the same time, our emotional selves are woven into our practice as we live through our work and work through our lives. Rather than this be problematic – as positivist and masculinist research frameworks which affirm ‘power distance, hierarchy and expertise’ (Arvidson 2013: 282) suggest – as relational and intimate subjects, emotions within the process become ‘vital experiences which move us into learning and understanding more about others, ourselves, and our world’ (Busier et al. 1997: 165). In Living Life to the Fullest, we have found that emotion and intimacies are productive and generative towards human understanding and, in the case of our project, enable an ethical interpretation of data ground in social justice and disabled people’s liberation.

Another thing I have learned this year is that grief isn’t only related to death and dying, but many different forms of loss and injustice. A prevalent form of grief that threads through Living Life to the Fullest – most notably through young people’s stories – are the ways in which ableism and disablism mediate their everyday lives, selves and relationships with others. While disablism might refer to the ‘exclusion of people with impairments and the undermining of psycho-emotional wellbeing’, ableism refers to the ‘promotion of forms of (hyper) cognition, competitiveness, and consumerism that disabled and non-disabled people are expected to judge themselves against’ (Liddiard and Goodley 2017: 3). These cultural doctrines deeply touch the lives of the disabled young people we have worked with this year. In the project, young people are telling us that others’ low expectations of them; an endemic lack of supportive service provision; the infantilising and restrictive systems that govern their lives; poor access to the usual spaces and places that most young people live, love and learn; and worries about futures steeped in the painful and unbaiting legacies of austerity politics, are powerfully impacting the ways in which they consider both their present and future. This grief – social and political injustice – is the most important to disabled young people in our project. Our hope is that by listening to and working with disabled children and young people and their families to share their own stories, we are exposing these common experiences of prejudice, inequality and injustice. Yet, collectively, we are also supporting the generation of counter narratives: affirmative stories that depathologise the lives of disabled children and young people and demarcate (disabled) lives as meaningful, joyful, valued and cherished.

In this way, storytelling embodies the practice of a politics of hope. It is through sharing our stories, then, that hope can live (Whitney 2018). Hope can ease suffering and aid survival; it can offer alternative futures and the opportunities to imagine or envisage them; and it can make the everyday possible, as well as political. As such, and in memory of my babies, I want to end this blog with the words of William Blake, taken from his poem Auguries of Innocence:

‘To see a world in a grain of Sand And a Heaven in a Wild Flower, hold Infinity in the palm of your hand And Eternity in an hour’.

(Blake, Auguries of Innocence, 1970: 1803–4)

Acknowledgements

Thanks go to the NHS staff members that have supported me this year – most notably the nurses at the Early Pregnancy Assessment Unit at the Royal Calderdale Hospital, West Yorkshire.

Big thanks to Dan (Goodley) and Katherine (Runswick-Cole) and the Living Life to the Fullest Co-Researcher Collective for their endless support and kindness; and, of course, to The Kid and The Boy for always being there.

References

• Aimes, C., Evans, K., Goodley, D., Liddiard, K., Runswick-Cole, K., Spurr, R., Vogelmann, E., Watts (MBE), L., Whitney, S. (submitted) ‘Working the edges of Posthuman disability studies: Theorising with young disabled people with life-limiting impairments’, Sociology of Health and Illness.
• Arvidson, M (2013) ‘Ethics, intimacy and distance in longitudinal, qualitative research: Experiences from Reality Check Bangladesh’, Progress in Development Studies, 13: 4, 279–293
• Bahner, J. (2018) Book Review: Kirsty Liddiard, The Intimate Lives of Disabled People, Routledge: London. Sexualities, 0: 0, 1–2
• Bansen, S.S. & Stevens, H.A. (1992) ‘Women’s experiences of miscarriage in early pregnancy’, Journal of Nursing and Midwifery, 37: 2, 84-90.
• Blake, William (1970 [1803–4]) ‘Auguries of Innocence’, in A Choice of Blake’s Verse, edited by Kathleen Raine, pp. 31–5. London: Faber and Faber.
• Busier, Holly-Lynn; Clark, Kelly A.; Esch, Rebecca A.; Glesne, Corrine; Pigeon, Yvette & Tarule, Jill M. (1997) ‘Intimacy in research’, International Journal of Qualitative Studies in Education, 10: 2, 165-170.
• Davidson, D. (2011) ‘Reflections on Doing Feminist Research Grounded in my Experience of Perinatal Loss: From Auto/biography to Autoethnography’, Sociological Research Online, 16: 1. Available from: http://www.socresonline.org.uk/16/1/6.html [Accessed 28/11/2018]
• Dickson-Smith, V. et al. (2009) ‘Researching Sensitive Topics: Qualitative Research as Emotion Work’, Qualitative Research, 9: 1, 61–79
• Garland-Thompson, R. (2012) ‘The case for conserving disability’, Bioethical Inquiry, 9, 339-355
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• Jefferies, L. M. (1998) ‘Little Babe’, Unite Notes, 18: 2, 1
• Kafer, A. (2013) Feminist Queer Crip. Bloomington and Indianapolis: Indiana University Press
• Layne, L.L. (2000) ‘‘He was a real baby with baby things’: A Material Culture Analysis of Personhood, Parenthood and Pregnancy Loss’, Journal of Material Culture, 5: 3, 321–345
• Liddiard, K (2018) The Intimate Lives of Disabled People. London and New York: Routledge
• Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (in press) ‘”I was excited by the idea of a project that focuses on those unasked questions”: Co-Producing Disability Research with Disabled Young People’, Children and Society.
• Liddiard, K. and Goodley, D. (2017). Disability and impairment. In B.Turner et al (Eds). Encyclopedia of Social Theory. London: Wiley
• Thomas, C. (1997) ‘The baby and the bath water: disabled women and motherhood in social context’, Sociology of Health & Illness, 19: 5, 622-643
• Whitney, S. (2018) Disability and Faith. Online. Available from: https://livinglifetothefullest.org/2018/11/26/disability-and-faith-part-3/ [Accessed 28/11/2018]
• Woodby, L., Williams, B. R., Wittich, A. R. and Burgio, K. L. (2011) ‘Expanding the Notion of Researcher Distress: The Cumulative Effects of Coding’, Qualitative Health Research, 21: 6, 830–838