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)

Picture of a bench with an engraved plaque that reads: 'It's a happy life and someone is missing'.

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
  • Goodley, D. (2014) Dis/ability Studies. Theorising Disablism and Ableism. London: Routledge
  • 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

 

 

 

 

Sexuality, representation and disability arts and culture

Over the last couple of months I’ve been working on multiple new projects that centre sexuality, intimacy, representation and disability arts and culture. Below, I share links to blog posts about each of these pieces of work.

Rewriting Sex Education, iHuman blog, June 22nd 2018

Image of Scotia Works, Sheffield

Scotia Works, Sheffield

Rethinking Disability: Emmerdale, Medium: Society Matters, Sept 4th 2018

Image of Emmerdale title scene

Emmerdale

Exchanging Knowledge through Creative Practice: What do disability arts and culture mean to you? Medium: SoE Research, Oct 5th 2018

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Critical Conversations towards disability justice

The Crip, The Fat and The Ugly in an Age of Austerity: Resistance, Reclamation and Affirmation 

Journal snapshot Kirsty and Jen

This month has been full of critical conversations towards disability justice – that which ‘has the power to not only challenge our thinking about access but to fundamentally change the way we understand organizing and how we fight for social change’ (Mingus, 2011) – in various guises. Firstly, I’m proud to say that the Special Issue of Review of Disability Studies (RDS) Jen Slater, Sheffield Hallam, and I have worked on, along with many brilliant article authors, has recently been published.

Our Special Issue entitled, The Crip, The Fat and The Ugly in an Age of Austerity: Resistance, Reclamation and Affirmation (Vol. 14, No. 2), invited contributions that troubled the impacts of neoliberal austerity upon the bodies and minds of marginalised others:

Our original desire in putting out this call was to critically explore the processes and politics of austerity upon diverse and marginalized embodiments in neoliberal and advanced capitalist times. Global austerity has a far reach, often into, around, behind, beyond and alongside the body. Global austerity routinely categorizes body-minds[i] in terms of productivity, value, cost, ability and aesthetics. Body-minds are positioned vis-a-vis global austerity as a site for social order, economic possibility, progression, and big business. Whereas “[a]n able body is the body of a citizen; deformed deafened, amputated, obese, female, perverse, crippled, maimed and blinded bodies do not make up the body politic” (Davis, 1995, pp. 71–72). In devising this forum, we yearned for space to contemplate the aesthetics, experiences and the reification of body-minds – how capitalism makes sense of and shapes body-minds; the ways in which austerity both marks and produces bodies and selves, and the means through which these are further shaped by disability, race, class, gender, age, size, sexuality, and nation. Although we explore aspects of these in our own work (Liddiard, 2018; Slater, 2015), we wanted to create a space to connect with others and think about diverse and marginalized embodiments in austere times. In this introduction, we story the process through which we put the issue together, from our original decision making and putting out the call, to supporting authors to revise their contributions. We do so because we feel it’s a fitting way to speak to the inclusions and exclusions made in this forum. At the same time, we feel it offers a broader commentary as to the “state” of global disability studies today’.

Slater and Liddiard (2018)

We had the following intriguing and insightful contributions from an exciting collection of authors:

  • My Infectious Encounters as an Autistic Epidemic, Jessica L. Benham (2018)
  • Reclaiming the Margins in the Face of the Quantified Self, Gabi Schaffzin (2018)
  • NoBody’s Perfect: Charm, Willfulness and Resistance, Maria Tsakiri (2018)
  • Working to Feel Better or Feeling Better to Work? Discourses of Wellbeing in Austerity Reality TV, Rowan Voirrey Sandle, Katy Day, Tom Muskett (2018)

Unfortunately, the Review of Disability Studies operates behind a paywall, so if you would like access to these articles or our introductory essay, please get in touch: k.liddiard@sheffield.ac.uk

Disabled Under-18s: Rights to Online Information/Communication about Sexual Relationships, European Children’s Rights Unit, University of Liverpool

On Wednesday 13th June, I was invited to speak to the European Children’s Rights Unit at the Liverpool Law School, University of Liverpool. I spoke about my research on the intimate lives of disabled people, and more specifically, the ways in which online spaces, cultures and worlds can serve as sites of access to love, sex and intimacy for disabled young people. In addition, I shared the ways in which our current ESRC arts-informed co-produced project, Life, Death, Disability and the Human: Living Life to the Fullest is centring online methods of inquiry and virtual research leadership in ways that are enabling young disabled people with shorter lives to co-lead research that is about their lives and futures.

Using stories from my new book, The Intimate Lives of Disabled People (2018, Routledge), I emphasised online and virtual worlds as potential accessible spaces that offer opportunities to build identity, and access community and emerging forms of cyber-citizenship. My contributions asked vital questions of future inquiry on the intersections of disability, children’s and young people’s rights, and their sexual and intimate citizenship. For example, how can online spaces, cultures and worlds open up more radical or emancipatory forms of sexual citizenship and selfhood for young disabled people, and how might we support young people to access these?

Attendees included academics and researchers, education professionals from mainstream and SEND schools, representatives from Brook and other sex, youth and disability organisations, and community members and activists. The aim now is to further build the critical dialogues that emerged into planning for future research – so watch this space!

To follow the European Children’s Rights Unit on Twitter, see @LIVEChildRights

 

References

  • Davis, L. (1995). Enforcing normalcy: Disability, deafness, and the body. London and New York: Verso.
  • Liddiard, K. (2018). The intimate lives of disabled people. Abingdon: Routledge.
  • Mingus, M. (2011) Changing the Framework:Disability Justice. Online. Available from: https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/ [Accessed 14/6/2018]
  • Slater, J. (2015). Youth and disability: A challenge to Mr Reasonable. Interdisciplinary Disability Studies. London and New York: Routledge.

I can hold it in my hands…

Today is a really exciting day – my first book has just been delivered and it’s a Real Thing that I can hold in my hands. My excitement is probably a bit silly, really, but I never thought it would/could be something I could complete, but now it’s just casually sat on my desk: a lovely and glossy version of some serious blood, sweat and (many) tears, and even more years. In this post I want to share the book’s preface, as a means to introduce it and story the process…

 

 

Preface (pgs. viii-x)

“Right, imagine you’re in Toronto in a bar. You’re pissed (drunk), but not too pissed. How would you explain your research to someone?” This was the first question put to me by my then-external examiner, Professor Dan Goodley, in my viva voce (the thesis defense for North American readers). Thoughts of the viva had made my blood run cold for nigh on three years, but as soon as I heard that question, I knew all would be well. As someone who has since examined others’ PhDs, I now see that was the point! But up until the viva, my PhD had been an empirical research project, which I had painfully “written up” as a doctoral thesis. It is thanks to both of my examiners, then, Dan Goodley and Cath Lambert, and their suggestion that my thesis already was a book, which caused it to be written at all.

I wrote most of my thesis from the tiny back room at my Mum and Dad’s house – my partner and I had moved in with them, after years of having our own place, to save enough money to emigrate to Canada so that I could undertake the inaugural Ethel Louise Armstrong Postdoctoral Fellowship at the School of Disability Studies, Ryerson University. I had seen the advert randomly in the oddly warm spring of 2011 on the Disability Research Discussion email list run out of the Centre for Disability Research at Leeds. Upon seeing it, I immediately rang The Boy (my partner) and said, “You could live in Canada, right?” Instantly he replied, “Go on then”. At that point, both of us would have struggled to point to Toronto on a map. Within a month I had applied for the position, survived a telephone interview, and had got the job. Within two months we had packed up our little home, and moved into the “granny annex” at Mum and Dad’s, where they very kindly brought me cups of tea as I wrote. My father proofread every single page. A reserved English fellow – a man who oft-takes the British stiff upper lip to the extreme – confessed me so much love and support with every slash of his red pen through my terrible grammar. We were to leave for Canada in January 2012, with me submitting my thesis in December 2011. I had just 8 months to complete writing, and I did.

Turning my PhD thesis into this book has not been nearly as quick and easy: it has been an enormous challenge. I have struggled. Like so many ‘early career’ scholars, I have found the Academy a precarious place to work, which has meant shelving writing on more than a few occasions, despite lots of support from colleagues, friends and allies. I have also found the (neoliberal) Academy relatively precarious to ones sense of self and wellness, particularly in terms of self-confidence and esteem. Disablism, ableism and the Academy can be a toxic combination at times, and can erode self-confidence. As a disabled woman, gender and disability can intersect in ways that encourage an attrition of self-belief and pride, which gets magnified by the hypercompetitive and disabling environment that is higher education in the UK. Regardless, it is this shortage of confidence that proffers the (also helpful) “disclaimer” below.

What this book isn’t…

This book isn’t a grandiose theoretical text, but a reporting of empirical research. This is not because I undervalue the transformative potential of theory, or that this book is atheoretical. As Braidotti (2013) says, if we can’t do theory then we are really just drowning in hard data; or as Goodley (2014) affirms, we should be able to draw upon social theory without apology. As both a disability studies scholar and a disabled woman it is crucial for me to continually locate the lived and material realities of disability life into my theoretical re-workings. As such, the politics of location are very vital to my work (see chapter 3). While I relish postconventional theory, at times I am unapologetically materialist: acknowledging that the richness of the stories in this book emanate from an understanding that they are lived, felt, experienced, and ground in the mundane and everyday. Sometimes this brings inconsistencies and tensions. Instead of making attempts to write these out, I purposefully write them in and – as Mike Gill (2015: 8) artfully puts it – ‘eagerly await challenges, complications, and expansions of my work here by others’.

This book isn’t an all-encompassing text that covers all facets of sexual and intimate life: what is contained within the covers of this book emerges only from the stories disabled informants told. Informants were predominantly (though not exclusively) White British, cisgender and heterosexual, and identified as having physical and/or sensory impairment. All lived within the community, although many had experienced institutionalisation in one way or another in the past and/or frequented respite care in hospices in the present. Therefore, the stories I interpret in this book are inherently shaped by these intersections, experiences and histories. They are further shaped by the context of doctoral research. Doctoral research is bound by time (UK PhD students have a maximum of 3 years and 3 months before funding stops), a (lack of) money and the emerging research skills of a PhD candidate, all of which I’m sure are imprinted on these sexual stories in some way. Further, the intimate politics of sexual storytelling in marginalised communities means that I am rightfully imbricated within and through these stories. In short, this book is also piece of me: as a researcher, scholar, and disabled woman; it speaks to my life as well as the lives of informants.

This book isn’t a complete lesson in co-production. While I am very proud that the doctoral research that underpins this book made use of participatory methods, being guided by a Research Advisory Group made up of local disabled people (or ‘The Rag’ as they preferred to be known…), this participation was not a co-production in the purest or fullest sense. As a then-doctoral student, I was yet to discover and immerse myself fully in the democratisation of research as a collaborative and collective process, which has later become my passion as a scholar and researcher (see livinglifetothefullest.org; see also Runswick-Cole, Curran, and Liddiard, in press).

What this book is…

This book is a collection of stories: stories of intimacy, affection, care, eroticism, desire and love, as well as stories of pain, oppression, exclusion, denial, and abjection and rejection. It contains a faithful disabled feminist analysis (ground in social and intimate justice) of sexual and intimate life in times of extensive disablism and ableism. It offers a narrative thematic analysis of sexual stories that shed light on areas of disability, love and life typically overlooked and ignored.

Importantly, this book is an accessible piece of writing. In disability studies I have come to see accessible writing as strength, a skill, and a quality that is necessary in order to speak to a range of communities and publics. I hope this book is accessible and readable. There are accessible versions of much of its contents on my website that are free to access (https://kirstyliddiard.wordpress.com) and I offer an accessible summary at the beginning of each chapter.

Finally, this book is a snapshot in time. The sociological research upon which this book is based took place across England, UK, between 2008 and 2011. If I were to carry out this research now, as I write in 2017, my approach, my relationships with disabled informants, and my analysis would likely be different. It’s been almost five years since the research ended and 8 years since it began. I’m different. The world is different: a global financial crisis has happened; a cruel UK Liberal Democrat and Conservative Coalition Government has been and gone; an even crueler Tory-majority government has emerged in its place. As if these weren’t enough, more recently Brexit and Trump have emerged as the inevitable-but-toxic results of a lying, scaremongering mistrustful establishment; a corrupt corporate Right Wing Press; and interminable global austerity. Each of these global events has happened since the research was carried out and each has understandably left its mark on disabled people’s individual and collective lives and selves, largely in devastating ways (Goodley, Lawthom, and Runswick-Cole 2014). As such, disabled people’s rights and access to civil, emotional, intimate and cultural life is different. Thus, this book can only ever be a snapshot in time, but this is not to say that its contents are no longer relevant. Far from it, the stories contained within these covers have much to tell us about access to love, life, and self in the shadows of disablism and ableism – all of which connect deeply to the current state of disability life in the global step to the Right (Goodley et al. 2017: 3): conditions for living which define the current era as a time of great precarity for many people, but particularly marginalised others.

If you would like to purchase my book, please see here

Book cover

ETHEL LOUISE ARMSTRONG POST-DOCTORAL FELLOWSHIP – Applications Open

Having the opportunity to undertake the Ethel Louise Armstrong Postdoctoral Fellowship  from 2012-2014 changed my life. It influenced my scholarship, my activism and ignited my passion for disability art and culture (getting to live in Toronto also helped…) You can read about the scholar-activist project I undertook during the Fellowship here and other research I collaborated on here. I cannot recommend it highly enough. You’ll have opportunities to work with people so wonderful and brilliant to boot, you’ll remember it forever… and you’ll keep going back and back. Check out the information below and consider applying.

The Opportunity

The School of Disability Studies in the Faculty of Community Services at Ryerson University invites applications for the Ethel Louise Armstrong Post-Doctoral Fellowship in Disability Studies. With a gift from the Ethel Louise Armstrong Foundation, this fellowship was established to further the scholarly contributions of disabled women. It is intended for a disabled woman who has completed doctoral studies within the past five (5) years in any discipline that advances scholarship related to Disability Studies.

Established in 1999, the School of Disability Studies at Ryerson University was the first in Canada to offer degree education rooted solely in a disability studies perspective. This part-time degree completion program targets learners with previous education and experience in disability–related fields. We offer a distinctive undergraduate program that illuminates the extent to which the lives of disabled people are shaped by patterns of injustice, exclusion, discrimination and the rule of social, cultural and aesthetic ‘norms’. Our program does not teach about disability; rather, it begins in/from disability to teach about social and material worlds. For further information on the School of Disability Studies, please see the following:

Website: http://www.ryerson.ca/ds/

Blog –  Vision, Passion, Action – http://radssite.wordpress.com

Facebook Group – https://www.facebook.com/groups/2387431727/

Twitter – @DS_Ryerson

Instagram – DS_Ryerson

Our current Academic Plan is available upon request.

Responsibilities

Based in the School of Disability Studies at Ryerson, the incumbent will be expected to:

• enhance and expand the scholarship of the School as a site for disability/Deaf/Mad studies

• design and implement a relevant program of research and publication

• seek opportunities for collaborative research and publication

• deliver an annual public lecture on her research

• engage with and contribute to the collegial life in and around the School

• write interim and final reports on fellowship achievements

This call is for a two-year term beginning September 2018. Applications can be made at any time with a closing date of March 1, 2018.

The fellowship awards a starting salary of $45,000 plus benefits.

Qualifications

The candidate will have completed a PhD (or expect to do so by September 2018) and is expected to participate fully in the academic life of the School of Disability Studies.

Candidates must have a demonstrated commitment to upholding the values of Equity, Diversity, and Inclusion as it pertains to all activities related to the Fellowship.

Equity at Ryerson University

At the intersection of mind and action, Ryerson is on a transformative path to become Canada’s leading comprehensive innovation university. Integral to this path is the placement of equity, diversity and inclusion as fundamental to our institutional culture. The university’s current academic plan outlines each as core values and we work to embed them in all that we do.

Ryerson University welcomes those who have demonstrated a commitment to upholding the values of equity, diversity, and inclusion and will assist us to expand our capacity for diversity in the broadest sense. In addition, to correct the conditions of disadvantage in employment in Canada, we encourage applications from members of groups that have been historically disadvantaged and marginalized, including First Nations, Metis and Inuit peoples, Indigenous peoples of North America, racialized persons, disabled people, and those who identify as women and/or 2SLGBTQ+.

As an employer, we are working towards a people first culture and are proud to have been selected as one of Canada’s Best Diversity Employers and a Greater Toronto’s Top Employer for both 2015 and 2016. To learn more about our work environment, colleagues, leaders, students and innovative educational environment, visit www.ryerson.ca, check out @RyersonU, @RyersonHR and @RyersonEDI on Twitter, and visit our LinkedIn company page.

How to apply?

To apply, please submit the following:

• A letter of application that describes the focus of your work including an articulation of how you are situated in relation to Disability Studies;

• Outline for a two-year program of activity that will advance Disability Studies scholarship

• A curriculum vitae

• 2 recent publications and/or creative product relevant to the application

• Names of 3 individuals who may be contacted for reference letters.

Please indicate in your application if you are a Canadian citizen or a permanent resident of Canada.

Please send your application materials and any inquiries about the award via email to:

Dr. Kathryn Church

Director and Associate Professor

School of Disability Studies

Ryerson University

k3church@ryerson.ca

The selection process will include an interview. If you are short-listed, we will be in touch to discuss your preferences for the ways in which that conversation will take place.

Candidates from Indigenous communities who would like to learn more about Ryerson University are welcome to contact Ms. Tracey King, M.Ed., Aboriginal HR Consultant, Aboriginal Recruitment and Retention Initiative, at t26king@ryerson.ca.

350 Victoria Street t: 416.979.5000, ext. 4591

Office: 99 Gerrard Street East, 5th Floor f: 416.598.5953

Toronto, ON, Canada  M5B 2K3 k3church@ryerson.ca ryerson.ca/ds

Thinking about loss

This week, for various reasons, I have been thinking about loss and the Academy. As a result this post is a bit of a melancholic ramble, but it was cathartic to write and I hope has some value. I want to begin to consider how loss and grief takes shape in the Academy; where there is space for it, and where it is closed down. For who/m and what are we allowed to grieve and who/m and what are we not? This is related to how we locate and make space for emotion in our work – how academic structures, which are built upon Humanist histories of rationality and reason, render emotion and feeling as excess. In my own research and scholarship, I follow Burkitt (2012: 458), conceptualizing emotion and feeling not as barriers ‘to clear reflexive thought’ but as necessary forms of affective labour for reflexivity itself. In this short post, I consider some recent and not-so-recent losses.

Today (Monday 20th November) is International Transgender Day of Remembrance – a time to remember those who have had their lives taken away from them, largely in deeply distressing and violent ways. It should be a time to reflect upon where violence ends, where it culminates – the tragic loss of a life – but also where it begins: in the subtle (and not-so-subtle) violences to which trans people are subjected as routine every day. As someone who knows, loves and cares for a trans person, it’s a time to pause and think about how we might be complicit (largely through silence) in these violences: some of us knowingly and consciously. In HE it’s time to think about how our disciplines, networks, offices, lectures and academic events reify or respond to transphobia: do we counter transphobia as routine where we come across it? Do cis academics and researchers take the time to learn and understand what transphobia looks like, or its effects – in the Academy and outside of it? How might we, as researchers and scholars, unpack the transphobia that often comes in the form of seemingly ‘reasonable’ and ‘rational’ arguments – most recently around childhood, medicalisation and future?

I’ve also been reflecting on another serious loss of life: the publication of an analysis in BMJ Open entitled, Effects of health and social care spending constraints on mortality in England: a time trend analysis (2017). This analysis confirms what many of us have known for a long time. What disability activists and allies have been saying for ages – through their cries of “cuts kill” – is that cruel Tory austerity politics, an amoral ideology that routinely dehumanises so many, has taken the lives of (almost) too many disabled, sick and ill people to count. According to The Independent, the research ‘found that there were 45,000 more deaths in the first four years of Tory-led efficiencies than would have been expected if funding had stayed at pre-election levels’ (Matthews-King 2017). As disability studies proponents and activists, how do we both stand against and mourn this loss of life? The Independent has called it ‘economic murder’, which doesn’t quite embrace the scale nor the depth of the loss: people’s loved ones; children; friends; and neighbours. These are lives lost through people being so scared and harassed by the Department for Work and Pensions (DWP) that they take their own life. These are lives lost via the worsening or progression of existing illness and sickness that is inevitable when one is under siege by the government. These are lives lost through abhorrent cuts to health and social care; critical services upon which we all know many depend. Lost sounds so careless; these are stolen lives.

In a week of so much loss, it’s natural to look inwards to our own lives, loves and losses. I’ve been preoccupied thinking about the publication of my book (Liddiard 2018), and its dedication to my aunt – a woman who inspired me in so many ways, with her talent and flair, as well as the endless love that she gave to those around her. My aunt died while I was writing up my thesis – her death floored me. The final few months of writing and grieving and grieving and writing were, in all honesty, agony. But, with lots of support, love, time and investment from others, I carried on. Thus as the dedication in my book reads, she really is/was the determination in every page. As I wait for the book to be delivered – the exciting moment when I can hold it in my hands as a real thing (!) – I am contemplating how important it is to remember our many supports in the face of academia’s individualising culture, but also about the ways that we can creatively remember people we have loved and lost in and through our research and writing. You can see some of my aunt’s artwork here in this short film I made.

I have no real conclusion to this ramble; it is little more than a collection of thoughts about life, loss, death and grief in and amongst a sad week. I end with the fitting words of disability justice activist, Mia Mingus, who sums it up powerfully:

We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been. Evidence for each other that there are other ways to live–past survival; past isolation.

This post is dedicated to the memory of Lisa Procter, a vibrant and brilliant scholar whom I was lucky to know, and even luckier to have the opportunity to work alongside.

References:

Burkitt, I. (2012) ‘Emotional Reflexivity: Feeling, Emotion and Imagination in Reflexive Dialogues’, Sociology, 46: 3, 458-472

Liddiard, K (2018) The Intimate Lives of Disabled People. London: Routledge, ISBN 978-1-4094-6090-9

Matthews-King, A. (2017) Landmark study links Tory austerity to 120,000 deaths, The Independent, Wednesday 15th November.

Mingus, M. (year unknown) About. Online. Available from: https://leavingevidence.wordpress.com/about-2/ [accessed 20/11/2017]

The Intimate Lives of Disabled People…

I’m thrilled to be able to say that I have finally submitted my book, The Intimate Lives of Disabled People, to its publisher, Routledge. It will be out in December 2017. Below I share the cover and its accompanying text. The book has been a long time coming and has taken immense amounts of graft, as well as copious amounts of support from colleagues, family, friends and allies, to who I will always be indebted. Big thanks, of course, go to #ScholarTed, who wrote most of it…

Disabled people are routinely assumed to lack the capabilities and capacities to embody and experience sexuality and desire, as well as the agency to love and be loved by others, and build their own families, if they so choose. Centring on the sexual, intimate and erotic lives of disabled people, this book presents a rare opportunity to understand and ask critical questions about such widely held assumptions.

Book coverIn essence, this book is a collection of sexual stories, told by disabled people on their own terms and in their own ways. Stories that shed light on areas of disability, love and life that are typically overlooked and ignored. A sociological analysis of these stories reveals the creative ways in which disabled people manage and negotiate their sexual and intimate lives in contexts where these are habitually denied. In its calls for disabled people’s sexual and intimate citizenship, stories are drawn upon as the means to create social change and build more radically inclusive sexual cultures.

In this ground breaking feminist critical disability studies text, The Intimate Lives of Disabled People introduces and contributes to contemporary debates around disability, sexuality and intimacy in the 21st century. Its arguments are relevant and accessible to researchers, academics, and students across a wide range of disciplines – such as sociology, gender studies, psychology, social work, and philosophy – as well as disabled people, their families and allies, and the professionals who work with and for them.

If you would like to attend a free Book Launch Extravaganza where my book will be launched on 31st October 2017 at Manchester Metropolitan University, please see here.

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