The unfinished body: The medical and social reshaping of disabled young bodies

Stories about disability are heavily shaped by the narratives offered by medicine and society. Those narratives enact an 'anomalous' body that is constructed as distant from the norm and therefore 'damaged' but also fixable. In this paper we explore how such narratives, and the practices they encompass, influence the stories disabled young people tell about their bodies and impairment. We do so by drawing on narrative qualitative interviews and visual practices carried out with seventeen disabled young people in a project funded by the Economic and Social Research Council that took place between 2011 and 2012 in the North East of England. The findings discussed here focus on how medical and societal responses to bodily difference become part of the stories disabled young people tell about their bodies, and influence the way they work with the body as something which remains 'unfinished' and therefore both fixable and flawed. Our conclusion is that a narrative of an unfinished body is produced, as young people manage their bodies as something that is integral to their emerging identity, but also as a potential threat that could undermine and give away their labour in making an 'ordinary' functioning body and life. The paper contributes to medical sociology and sociology of the body by producing new knowledge about how disabled embodiment is lived and framed by disabled young people in the context of ongoing attempts to change the body

Making sexual selves : a qualitative study of lesbian and gay youth

Drawing on data collected from nineteen qualitative semi-structured interviews with young lesbians and gay men, this thesis addresses the construction of sexual selves by those young people interviewed for this Ph.D. project. The interviews were conducted between January and December 2008. Participants were aged from sixteen to twenty-one, and all were living in the North-East of England at the time. This project is situated within what is considered to be a moment of social change in respect of the construction of lesbian and gay identities, notably due to the ‘normalization’ of those identities. This is a period in which the young lesbians and gay men interviewed for this project may be seen as growing up and coming out in. The study itself explores the ways in which the young people interviewed developed a sense of themselves as sexual, asking about the significance of lesbian and gay identities in the construction of those selves. Theoretically, a symbolic interactionist perspective is adopted, this project exploring the ‘everyday’ processes through which sexual selves were made and maintained. The data collected suggested a number of complex reflexive debates in which the young lesbians and gay men came to understand themselves as sexual. Addressing issues of desire and intimacy, the adoption of sexual identities, negotiations of sameness and difference, and the telling of sexual lives, this thesis discusses the complex, and at times paradoxical, ways in which lesbian and gay sexual selves were made.EThOS - Electronic Theses Online ServiceEconomic and Social Research CouncilGBUnited Kingdo

Making sexual selves : a qualitative study of lesbian and gay youth

Drawing on data collected from nineteen qualitative semi-structured interviews with young lesbians and gay men, this thesis addresses the construction of sexual selves by those young people interviewed for this Ph.D. project. The interviews were conducted between January and December 2008. Participants were aged from sixteen to twenty-one, and all were living in the North-East of England at the time. This project is situated within what is considered to be a moment of social change in respect of the construction of lesbian and gay identities, notably due to the ‘normalization’ of those identities. This is a period in which the young lesbians and gay men interviewed for this project may be seen as growing up and coming out in. The study itself explores the ways in which the young people interviewed developed a sense of themselves as sexual, asking about the significance of lesbian and gay identities in the construction of those selves. Theoretically, a symbolic interactionist perspective is adopted, this project exploring the ‘everyday’ processes through which sexual selves were made and maintained. The data collected suggested a number of complex reflexive debates in which the young lesbians and gay men came to understand themselves as sexual. Addressing issues of desire and intimacy, the adoption of sexual identities, negotiations of sameness and difference, and the telling of sexual lives, this thesis discusses the complex, and at times paradoxical, ways in which lesbian and gay sexual selves were made.EThOS - Electronic Theses Online ServiceEconomic and Social Research CouncilGBUnited Kingdo

Creating time for LGBT+ disabled youth : co-production outside chrononormativity

This article explores how 'chrononormative' constructions of time shape research, and offers an approach to co-production and research involvement that draws on insights from trans, queer and disability studies. The article presents early reflections on an NIHR School for Social Care funded research study, approved prior to but developed under the context of the Covid-19 pandemic, investigating personal support, sexuality, and gender in young disabled adults' lives. This project has been supported by a Project Advisory Group (PAG) of LGBT+ young disabled adults and we reflect on how engagement with the PAG have shaped our understanding of debates around time and involvement in co-production discourse. Our engagement with trans, queer and disability theory allows us to think about the constraints on time that such involvement has pushed against as we have sought to account for the diverse needs of the body-minds of the PAG in pandemic times. We suggest that this may speak to opening up the diversity and accessibility of co-production across other research contexts and intend this piece to encourage these conversations. The article thus offers a critical exploration of themes of time, embodiment and identity in the way in which co-production is enacted in funded research

Creating Time for LGBT+ Disabled Youth: Co-production Outside Chrononormativity

This article explores how ‘chrononormative’ constructions of time shape research, and offers an approach to co-production and research involvement that draws on insights from trans, queer and disability studies. The article presents early reflections on an NIHR School for Social Care funded research study, approved prior to but developed under the context of the Covid-19 pandemic, investigating personal support, sexuality, and gender in young disabled adults’ lives. This project has been supported by a Project Advisory Group (PAG) of LGBT+ young disabled adults and we reflect on how engagement with the PAG have shaped our understanding of debates around time and involvement in co-production discourse. Our engagement with trans, queer and disability theory allows us to think about the constraints on time that such involvement has pushed against as we have sought to account for the diverse needs of the body-minds of the PAG in pandemic times. We suggest that this may speak to opening up the diversity and accessibility of co-production across other research contexts and intend this piece to encourage these conversations. The article thus offers a critical exploration of themes of time, embodiment and identity in the way in which co-production is enacted in funded research

Création d’une communauté réunissant les études queer sur le handicap : leçons tirées de l’escargot

Cet article décrit le Queer Disability Studies Network (Réseau d’études queer sur le handicap), un espace créé pour les universitaires et les militantes et militants des études queer sur le handicap afin de bénéficier de solidarités, au sein des études sur le handicap, queer, trans et intersexe, en particulier pour les personnes marginalisées en raison de la queerphobie, de la transphobie, de l’intersexephobie et du capacitisme. Cet espace permettrait aussi d’alimenter les échanges d’idées d’une discipline à l’autre. Le réseau a été créé pour s’opposer à l’institutionnalisation d’idées qui délégitimiseraient les vies et les identités trans au sein du milieu universitaire et offre un espace de solidarité et de résistance au sein de l’université néolibérale capacitiste. L’article fournit une explication des origines du réseau. Puis, il utilise le motif de l’escargot symbolisant le réseau pour organiser les apprentissages des études trans, queer, intersexes et sur le handicap en un ensemble de « leçons » pour les groupes cherchant à développer des solidarités au sein des communautés universitaires et militantes. Ces leçons soulèvent des questions cruciales liées aux concepts de 1) chez-soi, 2) temporalités et mobilités et 3) incarnations et vulnérabilités. Nous concluons en discutant des implications de ces leçons pour la pratique des solidarités et des politiques de coalition en des temps contestés

Building a community for queer disability studies: lessons from the snail = Création d’une communauté réunissant les études queer sur le handicap : leçons tirées de l’escargot

This article describes the Queer Disability Studies Network, a space set up for Queer Disability Studies academics and activists to find solidarity, particularly those experiencing marginalisation due to queerphobia, transphobia, intersexphobia and ableism in Disability, Queer, Trans and Intersex Studies; and for ideas in these disciplines to inform one another. The network was established to oppose the institutionalisation of ideas that would delegitimise trans lives and identities within academia and provides a space of solidarity and resistance within the neoliberal-ableist university. The article provides an explanation of the origins of the network. From this it uses the network’s snail motif to organise learnings from Trans, Queer, Intersex and Disability Studies into a set of ‘lessons’ for groups seeking to develop solidarities within academic and activist communities. These lessons raise critical questions related to concepts of 1) home, 2) temporalities and mobilities, and 3) embodiments and vulnerabilities. We conclude by discussing the implications of these lessons for practising solidarities and coalitional politics in contested times

Improving mental health in autistic young adults : a qualitative study exploring help-seeking barriers in UK primary care

Background Autistic people are at increased risk of developing mental health problems. To reduce the negative impact of living with autism in a non-autistic world, efforts to improve take-up and access to care, and support in early years, which will typically start with a GP appointment, must be grounded in the accounts of autistic young adults. Aim To explore how autistic young adults understand and manage mental health problems; and to consider help seeking as a focus. Design and setting A cross-sectional, qualitative study. Autistic participants were purposively selected to represent a range of mental health conditions including anxiety and depression. A subsample were recruited from a population cohort screened for autism in childhood. The study concerns access to primary care. Method Nineteen autistic young adults without learning disabilities, aged 23 or 24 years, were recruited. In-depth, semi-structured interviews explored how they understood and managed mental health problems. Data were analysed thematically. Results Young adults preferred self-management strategies. Multiple factors contributed to a focus on self-management, including: beliefs about the aetiology of mental health difficulties and increased vulnerability with the context of a diagnosis of autism, knowledge of self-management, and a view that formal support was unavailable or inadequate. Families had limited awareness of professional support. Conclusion Young autistic adults without learning disabilities, and their families, may hold erroneous beliefs about autism and mental health. This may affect help seeking and contribute to an exacerbation of symptoms. GPs need to be alert to the fact that autistic young adults in their care may be experiencing mental health difficulties but may not recognise them as such

The interactions of disability and impairment

Theoretical work on disability is going through an expansive period, built on the growing recognition of disability studies as a discipline and out of the political and analytical push to bring disability into a prominent position within accounts of the intersecting social categories that shape people's lives. A current debate within critical disability studies is whether that study should include impairment and embodiment within its focus. This article argues it should and does so by drawing from symbolic interactionism and embodiment literatures in order to explore how differences in what bodies can do-defined as impairments-come to play a role in how people make sense of themselves through social interaction. We argue that these everyday interactions and the stories we tell within them and about them are important spaces and narratives through which impairment and disability are produced. Interactions and stories are significant both in how they are shaped by wider social norms, collective stories and institutional processes, and also how they at times can provide points of resistance and challenges to such norms, stories and institutions. Therefore, the significance of impairment and interaction is the role they play in both informing self-identity and also broader dynamics of power and inequality

Visual methods and voice in disabled childhoods research: troubling narrative authenticity

Visual methods are a popular way of engaging children and young people in research. Their growth comes out of a desire to make research practice more appropriate and meaningful to them. The auteur approach emphasises the need to explore with young participants why they produce the images they do, so that adult researchers do not impose their own readings. This article, while recognising the value of such visual techniques, argues that their benefit is not that they are more age appropriate, or that they are more authentic. Instead it lies in their capacity to display the social influences on how participants, of any age, represent themselves. The article does so through discussion of an Economic and Social Research Council research project, which made use of visual and other creative methods, undertaken in the UK with disabled young people. The research involved narrative and photo elicitation interviews, the production of photo journals, and creative practice workshops aimed at making representational artefacts. Through analysing the photography, the journals and interviews the article examines what it was research participants sought to capture and also what influenced the types of photographs they gathered and the type of person they wanted to represent. We argue that they aimed to counter negative representations of disability by presenting themselves as happy, active and independent, in doing so they drew from broader visual iconography that values certain kinds of disabled subject, while disvaluing others