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.

Advertisements

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.

Routledge-Logo-1Esrc_logo-2

Considering Chemicals…

In July 2017, I travelled to Ryerson University’s ReLab in Toronto, Canada, to co-facilitate a 5-day Design Fiction workshop. Entitled Thinking With Our Chemical Stories, the workshop invited disabled and Mad-identified artists from in and around the Greater Toronto Area (GTA) to explore their chemical lives. Working with my Canadian colleagues Esther Ignagni, Kim Collins and Eliza Chandler from the School of Disability Studies at Ryerson University, and Andy Darby from the University of Lancaster, as well as Toronto-based artist Lindsay Fisher, the team focused on the ways in which Design Fiction as a method could enable stories about the social, cultural and material lives of chemicals to come to the fore.

Design Fiction is a method of critical, speculative design. It uses fictional and narrative scenarios to envision, explain and raise questions about possible futures for design and the society (Tanenbaum 2015) in order to imagine alternative futures and work through key concepts and ideas in accessible ways. Chemical encounters intimately shape our bodies, selves, relationships and communities in helpful and harmful ways; these encounters are narrated in ways that routinely posit disability as part of an undesirable end to chemical lives. Design Fiction was used to draw out the tacit assumptions that drive this particular narration, as well as imagine an array of other possible stories of disability and chemical encounters.

Such a focus on disability, social life and chemicals emerged through an ESRC Festival of Social Sciences-funded public engagement project called ChemicalLives, which the lovely China Mills (School of Education, UoS) and I carried out in 2016. In ChemicalLives, we sat for 3 days in a ‘storytelling pod’ inviting staff, students and public visitors to come along and explore their interactions and engagements with a multitude of chemicals. You can read more on the Chemical Lives project page. Across the pond, Ignagni and Chandler have been developing a similar project, which has involved hosting a series of chemical stories workshops, both in the UK and in Canada.

Overall, Thinking With Our Chemical Stories was an exhausting but exhilarating week. We are currently writing up the outcomes and will continue to work with the design fictions produced through the workshop. So, watch this space!

 

Thinking Through the Possibilities of Pleasure, CDSA 2017, Ryerson University, Toronto.

I’m really excited to be participating in the Canadian Disability Studies Conference 2017 which, this year, is being held at the wonderful School of Disability Studies at Ryerson University, Toronto, Canada, where I did my first post doc.

For access reasons, here are copies of my talk for folks to follow as I present:

Standard Sized Print

Large Print

If you have any comments or questions, please don’t hesitate to get in touch on k.liddiard@sheffield.ac.uk

 

8b

Toronto

A (disability) politics of learning to contain…

Journal ArticleI have been lucky enough to write an article with the wonderful Jen Slater, which has just been released today. The article, entitled ‘Like, pissing yourself is not a particularly attractive quality, let’s be honest’: Learning to contain through youth, adulthood, disability and sexuality, has been published in the journal Sexualities. Sadly, this article is not ‘Open Access’, which means not everyone can access it for free. However, if you pop me an email (k.liddiard@sheffield.ac.uk) I will happily send a free copy. Excitingly, the article was published as part of a Special Issue, Disability and Sexual Corporeality, edited by Barbara Pini, Vicki Crowley, and Cassandra Loeser. You can read their introductory article here.

In this blog post, Jen and I offer a shorter, abridged and more accessible version of the article, which we originally wrote for brilliant disability publication Disability Now. Sadly, since this time Disability Now has now closed, so we offer it below:

“Pissing yourself is not the most attractive quality, let’s be honest”: Young disabled people and “growing up”

There are certain ways that we are expected to “be” and “act” as adults. However, in reality, all adults are different and have different expectations put upon them, dependent upon time, place and social positioning (e.g. gender; race; age; class; disability status). Disabled people growing-up can receive conflicting messages from society (including the media, families, school and so on). Sometimes this is an oppressive message of being ‘abnormal’, and sometimes it is a message of being ‘just the same as everybody else’, which can not only be practically difficult, but reinforces the need to “fit in”. In this article we share some things young people said about gender, sex and growing up in our separate research studies.

Jenny’s research involved spending time with young disabled people in order to think about youth and disability. When she was doing her research Jenny, a non-disabled queer young woman, was going out with her disabled friends, Embla and Freyja. Jenny wrote this in her field notes:

‘Embla’s arrives to pick me up so I rush out. Freyja’s going to meet us later, Embla tells me: she still needs to do her makeup. She takes ages doing her make-up, so will be late. I turn to look at Embla: she’s wearing a black dress, leather jacket, heeled boots, face made-up, and hair done. Nothing unusual there, she always looks great. I catch a glimpse of myself in the rear-view mirror: make-up-less, hair a mess. “You look nice”, I say to Embla, “I’m going to feel a right scruff coming out with you two”. “Don’t worry about it”, Embla reassures me, “it’s okay for you, you’re not disabled. I have to get dressed up; don’t want to live the disability stereotype!’

Jenny had many conversations with Freyja and Embla about the different expectations put on them as young women. Whilst for Jenny, choosing to not get dressed-up could be considered a challenge to “feminine beauty”, Embla and Freyja felt that as women with visible impairments it was a more radical decision to assert themselves as young women. This meant always wearing feminine clothing and make-up. Although this was a conscious political act, they also felt that taking the “not bothering” option would (as Embla put it) meant “living the stereotype of the cute little disabled girl”. Therefore, they had little opportunity to ‘not bother’ getting dressed up as not being considered a “woman” could also lead to assumptions of them not being sexual.

This worry became clear for Molly, a 21-year-old disabled woman. She told Jenny a story of her 16-year-old self. Molly was a swimmer and wanted to start taking the pill so that her periods would be predictable and not get in the way of her swimming. She went to the doctor, who was happy to prescribe the pill. However, when running through his list of questions he became embarrassed, replying:

“Erm… I’m really sorry but I’ve, erm, got to ask you this… and I know, well, of course you’re not, I mean, I know you’re not, but I do have to ask, you’re not sexually active… are you?”

There is an assumption here of Molly not being sexual. Often the idea presented to us of sex is that it is an intimate act that happens between two people. There is an assumption of “independence” which relates to how we think about adulthood, but how does this work if you are a young disabled person who uses personal care?

Kirsty researched disabled people’s experiences of sexual life. Young people told her that one of the most difficult parts of being a young disabled person can be the lack of privacy this can bring. Lots of young people can lack privacy, but for young disabled people, particularly those who required personal care from others, privacy was something that often had to be fought for. Some young people in Kirsty’s research said that they felt their maturing bodies weren’t their own; that they felt incredible amounts of shame if they accidentally ejaculated during personal care; or if they couldn’t make it to the loo in time. Often, this impacted the ways in which they felt about their gender and sexual identity. As Julie said when talking speaking about the shame she often felt as a woman, “…pissing yourself is not a particularly attractive quality, let’s be honest”. Yet, where does this shame come from? And what impact can it have?

The feeling of shame doesn’t come from within us, but comes from a society and culture which dictates what our bodies have to do and be in order to be considered “adult” (and especially “woman”). Culturally, we associate “leakiness” (for want of a better word) with babies and older people, and we consider any talk of wee, poo, and ejaculate “improper” in “polite society”. We are shamed by the very silencing of these realities of our lives and bodies. This often went further. Some disabled young people in Kirsty’s research could be very humiliated by other people’s reactions to these bodily realities:

Abram: “My dad was doing all my caring… I used to get quite a lot of erections and ejaculate quite a lot during the night and he mentioned it to my mum who thought it was a problem and [said] “Should we call the GP?” and it was like, “Mum, mum, it’s…not a medical problem!”

To avoid feeling shame, young people in Kirsty’s research came up with particular strategies to cope, yet these strategies were often painful, difficult and/or took lots of work and worry. For example, some said they dramatically regulated their fluid intake (which could cause pain); some changed catheter types; others spent lots of time emptying their bladder and bowels before sex, just to fit in with what our common ideas of what it means to be “sexy”. Ironically, most said that such strategies could hinder how relaxed and confident they felt during sex, their ability to enjoy sex and their overall experiences of sexual pleasure.

To sum up a little, our purpose in this short article was to raise some of the unspoken issues that can matter to young disabled people, or certainly the ones that we spoke to. It’s clear that there needs to be more conversations with disabled (and non-disabled) young people, but also with parents, practitioners and so on, around the different ways that we can ‘do’ gender and sexuality as adults and young people. Importantly, these conversations need to take into account the ways in which our bodies work differently. Accepting and broadening our ideas about what it means to be “adult” is one way, we think, to relieve disabled young people of the shame, labour, and worry that can be experienced through growing up.

Jenny Slater, Department of Education, Childhood and Inclusion (DECI), Sheffield Hallam University

Kirsty Liddiard, School of Education, and iHuman, University of Sheffield