12 - 12.05
Introductions
Dan Goodley

12.05 - 12.20
Kirsty Liddiard (University of Sheffield) Cripping Breath: Towards a new cultural politics of respiration 
Cripping Breath: Towards a new cultural politics of respiration is a new 5 year interdisciplinary programme of research funded by a Wellcome Trust Discovery Award. In this short talk we introduce the project: its origins, aims, methods and disability politics. The project begins from the premise that Covid-19 emphasises the need for urgent new analyses of the politics, processes and prioritisation of respiration and ventilation. The sudden emergence of global respiratory disease has reshaped our social, cultural, and political worlds and embodied experiences of health and illness. Importantly, the project centres the lives of people who have had their lives saved and sustained by ventilatory medical technologies. Respiratory failure is common in many health conditions, and is a symptom of Coronavirus. Our explorations, led by disabled, chronically ill and ventilated people, do so in recognition that these growing communities of people and patients are often absent from contemporary social theorisations of respiration and ventilation, but also that their experiences have much to teach about living in cultures of compromised respiration. Centring arts-informed, archival, narrative and ethnographic approaches, our project develops Crip perspectives - forms of knowledge production that emerge from lived experiences of disability and chronic illness. Artists-in-Residence, experts-by-experience, disability and arts organisations and clinicians will work in collaboration to curate and co-produce new understandings of the experiences of ventilated people, across a host of identity positions, to interrogate the new cultural politics of respiration and ventilation in a continuing global pandemic, and as we imagine post-pandemic futures.

• To follow Cripping Breath on X (formally Twitter): @CrippingBreath
• Please see the Cripping Breath website to learn more - click here

12.25 - 12.40
Ellie Cole (UCL)
People with disabilities in Liberia: a legacy of structural violence?
In this presentation I will discuss some initial reflections from my recent PhD fieldwork in Liberia. Liberia is a small low-income country on the West coast of Africa. It is a unique country as it was ‘settled’ in 1820 with (predominantly) freed enslaved people from the USA, and became Africa’s first republic following its independence in 1847. Liberia’s short history has been wracked with troubles. Enduring the lasting impact of colonialism, predatory capitalism and the slave trade, Liberia and its citizens have been ‘shaped and scarred’ by its history. In the last four decades, Liberia has experienced two brutal civil wars, the 2014-2015 Ebola outbreak and most recently the COVID-19 pandemic.
People with disabilities in Liberia continue to face severe stigma and discrimination, deeply entrenched poverty, and exclusion. Drawing on the 30 life-history interviews I conducted with people with disabilities whilst I was in Liberia, and taking what anthropologist Paul Farmer calls a ‘geographically broad and historically deep’ lens, this presentation will discuss how structural violence stemming from Liberia’s settlement and the interference of international actors impacts the contemporary lives of people with disabilities.

12.45 - 1.00
Dr Suzanne Glover (Pathfinders Neuromuscular Alliance).  Transition to adulthood for young people with Duchenne Muscular Dystrophy. “More than Muscle and Movement.”

Pathfinders Neuromuscular Alliance, hereafter referred to as Pathfinders, is a user-led organisation run by and for people with muscle-weakening conditions. The organisation aims to provide support to its members whilst also undertaking campaign work and research on issues important to the muscle-weakening community. This presentation will be delivered by Pathfinders’ Research Officer, Dr Suzanne Glover. Suzanne, who has a neuromuscular condition, led a small group of researchers with Duchenne Muscular Dystrophy (DMD) to undertake a co-produced research study on Becoming an Adult with DMD. The work has been supported by a wider group of academics with expertise in the intersection of disability, social care and research.
Pathfinders understands that for people with DMD, entering adulthood can have a multifaceted impact on their lives. DMD causes progressive muscle weakness as individuals grow older which results in increasing care requirements. Developments in treatments such as steroid medications, ventilation and cardiac care have made positive steps in managing some aspects of living with DMD in adulthood. Nevertheless, our research indicates that so much of our social world and the existing systems designed to support disabled adults is inadequate for these individuals. Through co-production, this Pathfinders’ research uncovers a greater depth of understanding of adulthood in this population. It intimately explores how lives of these young adults are often over medicalised, mitigating important parts of identity and autonomy.

·         https://www.pathfindersalliance.org.uk/

1.05 - 1.20
Gareth Thomas (Cardiff University) Critical disability studies and Erving Goffman: the (im?)possibilities for convergence
Erving Goffman’s scholarship has been subject to intense scrutiny within disability studies, with some highly critical of his approach and others reflecting on his ideas with more sympathy and appreciation. In this talk, I consider the (im)possibilities for convergence between Goffman’s work and critical disability studies (CDS). Drawing on an ethnography of a UK-based café run by/with people with learning disabilities, I use Goffman’s (1967) concepts of ‘deference’ and ‘demeanour’ to capture how interactions in this space are organised and imbued with acts of dis/respect. Using Goffman’s ideas in conjunction with concepts (e.g. ‘crip time’) and sentiments from CDS, I show how mundane moments – from drink-making, to order-taking, to serving purchased items – are carefully accomplished in ways that respect ‘territories of the self’ (Goffman 1971). Equally, I capture how the conduct of customers, on occasion, aligned with a tragic and deficit framing of (learning) disability, with members of the team (often implicitly) ignored, disregarded, or figured as charitable subjects. Ten years on from a plenary at the Society for Disability Studies Conference, where panellists debated whether disability scholars should continue to make use of Goffman’s work (Brune and Garland-Thomson 2014), I conclude by highlighting both the value and limitations of Goffman’s analysis.

1.20 - 1.40
Questions and discussion
Dan Goodley

Bios
Dr Kirsty Liddiard is currently a Senior Research Fellow in the School of Education at the University of Sheffield and a theme co-leader in iHuman. She is the author of The Intimate Lives of Disabled People (2018, Routledge) and the co-editor of The Palgrave Handbook of Disabled Children’s Childhood Studies (2018, Palgrave) with Tillie Curran and Katherine Runswick-Cole. She is also co-editor of Being Human in Covid-19 (in press, Bristol University Press) with Warren Pearce, Paul Martin and Stevie de Saille. She tweets at @kirstyliddiard1

Dr Suzanne Glover is the Research Officer at Pathfinders Neuromuscular Alliance. Joining Pathfinders towards the end of her PhD, Suzanne contributes to various research projects through connecting University researchers with young adults with neuromuscular conditions to co-produce research. Suzanne is currently leading Pathfinders’ project on Transition to Adulthood for those with Duchenne Muscular Dystrophy (DMD). Suzanne has Spinal Muscular Atrophy (SMA) Type II and uses non-invasive ventilation when needed. She lives in an apartment with her husband, Colin, along with their gracious Greyhound, Lady Edith. Suzanne has a 24-hour care package to support her needs and independence. Their home is also equipped with environmental controls using Amazon's Alexa. Suzanne enjoys going out for walks and loves dogs almost as much she loves a good strong cup of tea!

Gareth Thomas is a Reader in the School of Social Sciences at Cardiff University. He is a sociologist with interests in disability, medicine, health and illness, reproduction, and technology.

Ellie Cole (she/her) is a PhD researcher at University College London. She has worked in disability-inclusive international development research for more than a decade on research projects across Africa and Asia. Her research interests include the intersectional experience of disability and poverty, health equity, and disability-inclusive climate resilience.

LINK TO THE FULL TEXTS HERE