6th December iHuman Critical Disability Studies seminar

iHuman Critical Disability Studies Seminar
12 - 2, 6th December 2023
HYBRID EVENT
Face-to-face: Workroom 2 (The Wave)
Online: Google meeting - please note we will be joining here at 12 noon GMT http://meet.google.com/uwg-unaa-amv

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.

FULL TEXT OF PAPERS

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KIRSTY LIDDIARD

A breath of fresh air: Cripping research contexts

Hello, Betty!

I want to begin this short post by introducing you to Betty. Betty is my ventilator - a BiPAP - which stands for bilevel positive airway pressure. Betty Bipap (as she’s also known) is very clever. She pushes room air into my lungs as I sleep to improve the levels of oxygen in my blood and reduces the amount of carbon dioxide that I can no longer ‘process’ or expel independently.

Now, I first met Betty in 2015, following a routine sleep study which revealed that my oxygen saturation was dropping over 30 times a night. A consultant handed Betty to me and told me to go home - “it’s easy to use” she said, “this is the on/off button”. A life-changing moment.

I tried Betty that night, but it didn’t work for me. She was really uncomfortable and made me physically sick. I popped Betty under the bed and wouldn’t meet her again for another two years, by which point I was an inpatient with severe heart failure.

I was lucky, though - I had a bed with a window and enjoyed the NHS tea. I stayed for 3 weeks, undergoing intensive inpatient training to learn how to use Betty. I soon returned home - heart no longer failing - but only under the promise that collaborating on breathing with Betty during the night would be my new reality for the rest of my life.

But this is only Betty’s clinical story. And these clinical stories are already relatively well-known. So too are the dominant cultural understandings of what we think we know about the lives of those who live with ventilation. The idea that being on ventilation means one is near end-of-life; has a failing or ailing body; and ultimately, a life of lesser value.

In actual fact, my human story of Betty’s presence is far more affirmative - rather than being close to death, she enables life. I’m a Mum, partner, daughter, carer, and academic. Betty is a tool, a friend, my travel companion, and the ultimate forbidden toy to my toddler. Like me, she has a life outside of the clinic and the clinical.

This post has begun with my own narrative to affirm the ways in which human stories of disability and illness are deeply valuable: how they counter dominant ways of knowing and offer new lenses to inform respiratory healthcare. I now want to move on to outline Cripping Breath, a new University of Sheffield co-produced research project that has recently received a Wellcome Trust Discovery Award.

Cripping Breath: Thinking past Betty

Betty is just one form of respiratory technology and mine is just one story. According to NICE, respiratory disease affects 1 in 5 people (NICE 2020). As such, Cripping Breath centres the lives of people who have had their lives saved and/or sustained by ventilatory medical technologies. This includes a diverse population of people with a wide range of health conditions, including neuromuscular and neurological conditions, COPD, Motor neurone disease (MND), asthmas and more. Our explorations will be led by disabled, chronically ill and ventilated people, 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.

Beyond these quite specific engagements with respiratory health, our project is important because we are living in a respiratory age that needs urgent analyses of what we’ve called a ‘new cultural politics of respiration’. According to Allen (2020: 80) ‘breathing, as the practice that connects bodies to air, is undertheorized or overlooked’. The primitive act of breathing is inevitably something that we take for granted, ‘yet in the midst of the Covid-19 pandemic, compromised respiration is now at the forefront of everybody’s minds’ (Fitzharris 2020; np). Notably, we are at a point in history where respiration is now pulled into view more than ever before. This is undeniably through Covid-19 as a (continuing) global public health crisis, but also through climate crises, and increased pollution and ecological degradation, which are affirming a population-wide debility around respiration (Puar 2017).

Thus, Cripping Breath centres respiratory health, but does so in a broader context that is worthy of attention. To give some timely examples: the first is how we are recovering from Covid-19, and how we are managing our everyday risk of infection: masks, Co2 monitors, vaccine equity, and Long Covid. Secondly are global climate crises. In 2021, the World Health Organization declared air pollution the world’s biggest public health crisis (WHO 2021). Thirdly is social deprivation and respiratory health. We’ve seen recently how the death of Awaab Ishak has shed light on a social housing scandal and how Ella Kissi-Debrah became the first person in the UK to have air pollution listed on her death certificate. And now, more recently, we are amidst energy and cost of living crises whereby many disabled people are struggling to afford to run the very medical equipment that keeps them alive.

Breathing, then, is far from only autonomous and automatic. It is a social, political and embodied process which speaks to the need for inquiry that is inclusive of gender, race, class, age, disability, and nationality within conversations about respiratory health - both in an ongoing pandemic and as we look to post-pandemic futures.

Cripping Research: embracing Crip and co-production

In order to acknowledge and situate disabled, chronically ill and ventilated people as knowledge producers, theoretical provocateurs, artists and researchers - a key research aim - Cripping Breath will develop Crip methodologies, which have the potential to drive positive and inclusive research cultures. Our Research Team (which will grow as the project gets underway) centres disabled and chronically ill collaborators, many of whom are long-term users of forms of ventilation. For us, this lived experience embodies the politics of Crip - infusing the disruptive potential of disability into the normative spaces and interactions of research inquiry. As such, those typically excluded from research processes and knowledge production take centre stage (see Whitney et al. 2019).

Furthermore, our approaches to co-production are supported by our brilliant partner organisations: CRIPtic Arts, Pathfinders Neuromuscular Alliance, The Art House, and Sheffield Teaching Hospitals. Co-produced research ‘aims to put principles of empowerment into practice, working “with” communities and offering communities greater control over the research process’ (Durose et al. 2012: 2). By extension, then, for Cripping Breath research is not a process about people with respiratory conditions, but conducted with and by them (Fudge et al. 2007). Co-production can be a contested field, but we purposefully make space for unknowing and uncertainty, letting research relationships with disabled and chronically ill people and partners lead, with the aim that they take ownership of the research in ways unforeseeable at this juncture (see Liddiard et al. 2019; Liddiard et al. 2022).

The project’s transformative potential emerges, then, in centring ventilated people’s lived and embodied knowledges in existing theories of respiration and breathing for the first time. Our inquiry develops a new cultural politics of respiration in a time of new histories of ventilation emerging during an ongoing pandemic. Crip perspectives offer a sitpoint that emerges from disability studies and activism and which unapologetically centres disability and chronic illness as valued human experiences. Across four distinct streams of inquiry our project positions Crip perspectives as the very driving subjects of disability arts expression and curation, inclusive methodologies and scholarly transformation and equitable theory-building with, rather than on, marginalised communities. Ultimately Cripping Breath acknowledges the ways disability and chronic illness offer ‘alternative ways of conceptualising the human subject’ (Braidotti 2012: 37) currently omitted in existing scholarship surrounding breathing, respiration and ventilation. To give you a flavour of the methods Cripping Breath will employ:

• In our narrative stream, our expert-by-experience co-researchers will employ virtual narrative methods to capture participants' everyday lived stories of ventilation;
• In the archival stream, we will spend 6 months with the Wellcome Collection, virtually exploring archives of respiratory medicine to rewrite ventilatory histories from the perspectives of marginalised people;
• In our arts stream, participants will work with the projects Artists-in-Residence Jamie Hale and Louise Atkinson via accessible and hybrid workshops, to co-curate artistic data via research-informed theatre and visual arts approaches;
• And in the ethnographic stream, patient-led clinical ethnographies at Sheffield Teaching Hospitals will 'follow' respiratory technologies from clinics to the home to explore clinicians' and patients' negotiations of ventilator practice over time.

Moreover, we’ve designed the project so that each stream offers distinct forms of data while committing to responsive, flexible, hybrid, slower and Covid-safe approaches - to work accessibly and inclusively together.

Conclusion

To end here, then, Cripping Breath radically positions disability and chronic illness as productive, creative and disruptive. Our project builds critical transdisciplinary scholarship around the lived realities of ventilation to explore a new cultural politics of respiration in a pandemic age. But to do so, the project places people with lived experience at the very heart of inquiry - to change the ways in which research typically happens. This means being experimental, innovative and bold. Our desire is for the highest quality scholarship that is radical in its research leadership: to explore what happens when disabled, chronically ill and ventilated people come together to coproduce theory and knowledge. We are very proud, as a Research Team, to have co-designed a project that truly values disability and chronic illness as the driving subjects of research and innovation - this is Cripping Breath.

References

Allen, I. K. (2020) ‘Thinking with a Feminist Political Ecology of Air-and-breathing-bodies’, Body and Society, 26: 2, 79–105

Braidotti, R. (2012) The Posthuman. London: Polity.

Durose, C., Beebeejaun, Y., Rees, J., Richardson, J., Richardson, L. (2012) Towards
Coproduction in Research with Communities. AHRC: Swindon, UK.

Fitzharris, L. (2020) A brief history of ventilation. Online. Available from:
https://wellcomecollection.org/articles/XvslwhQAAO0l0Q4V. Accessed 23/9/2021

Fudge, N., Wolfe, C.D.A., McKevitt, C. (2007) ‘Involving older people in health research’, Age and Ageing, 36: 492– 500.

Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (2019) ‘“I was excited by the idea of a project that focuses on those unasked questions”: CoProducing Disability Research with Disabled Young People‘, Children and Society, 33: 2, 154- 167

Liddiard, K., Goodley, D., Runswick-Cole, K., Whitney, S., Vogelmann, E., Watts, L., Aimes, C., Evans, K. and Spurr, R. (2022) Living Life to the Fullest: Disability, Youth and Voice. Bingley: Emerald Publishing

Nice (2020) NICE impact respiratory conditions. Online. Available from: https://www.nice.org.uk/about/what-we-do/into-practice/measuring-the-use-of-nice-guidance/impact-of-our-guidance/nice-impact-respiratory-conditions#:~:text=Respiratory%20disease%20affects%201%20in,NICE%20guidance%20on%20respiratory%20conditions. [Accessed 12/12/2022]

Puar, J. K. (2017) The Right To Maim: Debility, Capacity, Disability. Durham, NC: Duke University Press

Whitney, S., Liddiard, K., Goodley, D., Runswick-Cole, K., Vogelmann, E., Evans, K., Watts (MBE), L., and Aimes, C. (2019) ‘Working the edges of Posthuman disability studies: Theorising with young disabled people with life-limiting impairments’, Sociology of Health and Illness, 41: 8, 1473–1487

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Ellie Cole

People with disabilities in Liberia: a legacy of structural violence?

Slide one: title.

I’d like to talk today about some initial reflections from my PhD fieldwork earlier this year. I am a PhD researcher from UCL. I am white, female-presenting, with shaved black hair and lots of piercings. My pronouns are she/her.

The image on this slide is of the main road in Foya – a remote area of Liberia. There are people walking down the road, which is dusty and unpaved, there are concrete houses with zinc roofs on either side and the sky is blue – it was hot!

Slide two: presentation outline.

The image on this slide is of a large bright blue two-storey building. This is the office of the national organisation of people with disabilities in Liberia where I spent a lot of my time. There is a flight of stairs leading to the upper floor, which was the office of the national chess federation.

In this presentation I will discuss some initial reflections from my recent fieldwork in Liberia. I am going to talk:

• About the research
• About Liberia
• Potted history (Ebola and COVID-19)
• What is structural violence?
• Initial reflections from my data

Slide three: about the research.

The aim of my research project is to understand how people with disabilities in Liberia experienced the COVID-19 restrictions (lockdowns, social distancing, etc.) and how this compares with their experience of the Ebola restrictions.

I really wanted to centre the voices of people with disabilities, particularly in remote areas where their voices are not heard. To do this, my research with people with disabilities had three main components. I ran a photovoice project over ten weeks between October and December 2022, which had three groups of 8 co-researchers – men with disabilities, women with disabilities and caregivers and assistants for people with disabilities. Photovoice is a participatory research methodology, artistic knowledge production and analysis by the people with disabilities themselves with me acting as a facilitator.

I returned to Liberia in February and conducted 30 life history interviews with people with disabilities in Monrovia (the capital) and in rural and remote areas. These were long interviews where people with disabilities were given the opportunity and freedom to tell the story of their lives in detail. I also completed 40 interviews with a range of people including health and development professionals, local government, disability organisations and others. I spent around six months in Liberia over the two visits.

Slide four: Liberia

This is a map of Liberia.

Figure 1 map of Liberia (credit Mo Pamplin)

The Republic of Liberia is a small low-income country in West Africa with a population of around five million people (LISGIS, 2023). The country is extremely youthful – average age 18 years. Despite being extremely rich in natural resources such as rubber, iron timber and diamonds, Liberia is one of the poorest countries in the work, ranking 175 (out of 189 countries) on the Human Development Index. Poverty is everywhere in Liberia, more than half of the population live below the poverty line and the majority of these people live in extreme poverty (less than $2.15 per day) (LISGIS, 2017).

Because the country is so poor there are limited public services, including a weak health system, this means that the widespread endemic diseases and frequent epidemics are challenging to manage.

Data on disability in Liberia are limited and the questions in the national Census are problematic (I can talk about this more later if you want!), but one relatively recent survey found that 14.1% of people have some form of disability and that a quarter of households include a person with a disability. Stigma and discrimination remain widespread. Disability is still considered a catastrophe and the general conceptualisation of disability in Liberia remains predominantly pity- or charity-based and medicalised. And people with disabilities are often unable to access the limited systems and services that benefit the wider population (Republic of Liberia, 2018).

Slide five: a turbulent potted history

This is a short timeline with some of the key moments in the history of Liberia.

Figure 2 key moments in Liberian history

Liberia’s history is pretty unique. It is one of only two countries in Africa that was not ‘officially’ colonised by an imperial power (the other is Ethiopia). It was first ‘settled’ from 1820 by (predominantly) freed enslaved people from the USA. Liberia declared independence in 1847 and became Africa’s first republic. . The settlers effectively colonised Liberia. They became known as Americo-Liberians and they formed an elite which controlled all the power and money, and who dominated and repressed indigenous groups from day one. After independence, the Americo-Liberians were in power for over a century until a bloody coup in 1980, led by an indigenous army master-sergeant Samuel Doe, who then became a brutal dictator.

Liberia experienced two bloody civil wars between 1989 and 2003, the first led by Charles Taylor to overthrow Samuel Doe, the second by rebel groups to overthrow Charles Taylor. By some estimates 10% of all disabilities in Liberia were caused in some way by the civil wars.

Since the end of the war, Liberia has enjoyed nearly two decades of relative peace. However, the country was rocked by two devastating disease outbreaks, first the 2014 West Africa Ebola outbreak and then the COVID-10 pandemic.

The Ebola outbreak started in Guéckédou, Guinea in December 2013. Guéckédou is very remote and right on the border of Sierra Leone and Liberia, which are very porous and Ebola quickly spread across the borders.

The country locked down and the government implemented extensive restrictions: curfews, school closures and restrictions on public gatherings. In Monrovia they mandated cremation for all deaths suspected of being Ebola – this was universally hated.

The health system collapsed under the pressure caused by the outbreak, clinics and hospitals were closed, people rightly feared going to seek treatment as they could catch the disease or be taken away and sought treatment from drug peddlers or informal healers.

By the end of the outbreak in mid-2016 there had been 28,637 cases and 11,315 deaths, and Liberia was disproportionately impacted. Liberia lost 8% of its health professionals.

Liberia barely had time to even start recovering from Ebola before COVID-19 hit. Like everywhere, the disease spread quickly, although cases were concentrated in Monrovia. Like everywhere, the country locked down and the restrictions were very similar to Ebola and included curfews, school closures and restrictions on public gatherings. There were relatively few COVID-19 cases confirmed: 8,090 cases and 295 deaths. This needs to be taken with a huge grain of salt. There remains a lack of PCR testing capability, and the population is extremely youthful.

Slide six: what is structural violence?

Peace theorist Johan Galtung coined the term ‘structural violence’, where social structures or institution harm people by preventing them from meeting their basic needs (Galtung, 1969). He calls it ‘the tranquil waters’ because the structural violence is unnoticed or feels like the natural or usual way of things.

But why did I tell you all this history? Paul Farmer’s approach to structural violence, which I have been using, says that it can only be understood as being ‘historically deep and geographically broad’ (Farmer, 2004). This is both the historical context and enduring impacts of things like colonialism, as well as external factors and power imbalances, such as the influence of other nations, international organisations, and neoliberalism – structural violence can be by governments on citizens but also by ‘strong’ countries on ‘weak’ ones.

The image on this slide is of the cover of Fevers, Feuds and Violence: Ebola and the Ravages of History, an excellent book by Paul Farmer.

Slide seven: some initial reflections

The image on this slide is of the sun setting over the Atlantic Ocean behind an informal settlement in Monrovia.

I am in the very early stages of my analysis – I’ve just finished drafts of my first two chapters of my thesis last week, so I will share with you some initial reflections and a few of the excellent photos my co-researchers took for their photovoice project as I think each of them reveals kinds of structural violence experienced by people with disabilities in Liberia.

Slides eight-ten: photovoice photos

This first photo was taken by a woman with a physical disability. It is image is of a new-looking 4-storey building in Monrovia that houses a health clinic. There is a large iron gate blocking the entrance. The co-researcher told me that there are steps up to the clinic which are impossible for her to navigate.

This second image is of Tubman Boulevard, the terrifyingly busy road running through the middle of Monrovia. The photo was taken by a male co-researcher with a visual impairment. There is a zebra crossing but he told me that drivers do not ‘respect the white cane’ and stop for him to cross. The condition of the road is poor and the pavement is completely missing in places.

Finally, this photo shows a woman walking over discarded plastic and rubbish next to a swamp. The ground is not visible because there is so much rubbish. This photo is of a female photovoice co-researcher who is the personal assistant to the head of the national organisation of people with disabilities. They were going to meet a mother of a child with disabilities who had been injured. The family lived on the dumpsite. This photo was taken in Sinkor, an area of Monrovia.

Slide eleven: structural violence in Liberia

I think this final photo is a good example of some of the structural violence in Monrovia. Sinkor is the most affluent area of Monrovia, and is very much a two-tiered place, some (rich) people live in nice houses in gated, high-walled compounds, which have broken glass at the top of the walls to deter intruders, and others live in places like this mother. The government is clearly failing, either to provide support this mother with any kind of social protection or to address the rubbish issue. People did not expect help from the state. Some people with disabilities in Monrovia I spoke to wanted the government to help, but most, especially in rural areas looked elsewhere (NGOs, CSOs FBOs), sense of hopelessness. People feel powerless to make change themselves weighed down under years of oppression and being ignored.

The photo of roads rases two issues. Disability discrimination is ingrained in Liberia both culturally and institutionally. People with disabilities are considered worthless by many people, or caused by or causing witchcraft and curses. Institutional violence happens through existing discriminatory legislation and the lack of implementation of anti-discrimination laws.

Also, roads in Liberia are universally terrible. A lot were built in the 1960s but after the wars not repaired, and the rainy season makes some areas impassable and further worsens the roads. Extractive industry’s huge trucks also further worsen the roads. There is some improvement in China constructing roads, but that is a huge other question.

Related to infrastructure, the photo of the building again raises two points. The first is the lack of construction guidelines for accessibility. Even new buildings such as that one are not always accessible – and this includes government buildings. The other issue is around health more broadly. The health system in Liberia completely ignored or excluded indigenous peoples until the 1960s (it was for Americo-Liberians only). What health system there was was completely destroyed by the civil wars and then collapsed again during Ebola.

Structural violence is also caused the power to decide when and how to intercede. In Ebola, the international community was very late in fully committing to mount a response, until the disease moved beyond the borders of the three countries and it became a perceived threat to them. And during COVID-19, the international community had their own things to worry about so barely came at all.

Much of the Ebola response was in vertical ‘Ebola’-specific programmes. These also caused structural violence as it pulled health professionals away from general health services. In the end, many more people died from health issues that were not Ebola than from the disease itself. It is not known how many disabilities were caused by this lack of health care.

And even the benefit of these Ebola programmes didn’t always reach people with disabilities. In both outbreaks people were supposed to be supplied with things like buckets, chlorine and soap, but many people I talked to said they had only got some or none. In Foya (the slide at the beginning) the local organisation of people with disabilities a received grand total of one bucket.  People I spoke to in the rural areas said that they had missed out on COVID-19 vaccine programmes because they couldn’t get to the place they were being given or it was not accessible.

During Ebola and COVID-19 the national organization of people with disabilities was able to do some food and stuff distribution, but invariably this was only in Monrovia – due to both capacity issues and also the terrible roads! This perpetuates the structural violence of the urban/rural divide.

Lots of people I spoke to in particularly the remote areas were deeply mistrustful of the government. The government had been historically absent and providing little services for the people with disabilities and during Ebola and then COVID-19 suddenly became autocratic. People believed conspiracies that the outbreak was deliberately caused by government to control or enslave people, or that it was brought by international organisations and health workers to kill off the population or steal body parts. Some believed that the diseases didn’t exist at all. One woman with disabilities I spoke to in rural Lofa county didn’t believe that Ebola was real until her husband died of the disease.

So these are just a few things I’ve been thinking about lately… there is so much I could talk about but I have no more time – please ask me more!

Slide twelve: thank you!

This last photo is of the dense rainforest in Lofa county.

SUZANNE GLOVER

Will be referring to this document

And these slides hyperlink

Presentation script – iHuman Critical Disability Studies Seminar

1. hello and welcome
2. very brief session outline
3. introduction to Pathfinders

1. Pathfinders Neuromuscular Alliance was previously established as ‘DMD Pathfinders’ in 2014. In 2020, it expanded to include all neuromuscular conditions, becoming Pathfinders neuromuscular Alliance.

4. It is an user-led charity which promotes choice, control and quality of life for teenagers and adults with neuromuscular conditions.

1. I would love to tell you more about the many projects that are going on, but with limited time today, I encourage you to check out the website and social media channels.

5. We launched our co-produced research report just last month. We set out to examine  Collaboratively working with peer researchers and our team of academics, we produced an accessible summary report accompanied by an Easy Read version.
6. This is just some of our research team on the report launch day, Kirsty Liddiard who is also speaking today. In this photograph you can see, Dr George Peat from Northumbria University, Prof David Abbott from Bristol University, Pathfinders peer researcher Brendan Casey and Josh Slack from Inertia Creative who is developing our accompanying research findings video.
7. Transition to adulthood
   1. DMD is a genetic condition muscle weakening, it generally appears in early childhood. In the last couple of decades, advances in medical care has enabled people to live well into adulthood.
   2. However, vital medical advances have made way to new era of social challenges for this group.
   3. Despite lots of health and social care transition research for this group, it still generally accepted that transition from children to adults health and social care is lacking efficient practice. Furthermore, with the exception of a small number of studies, we know even less about lived experience of this transition process.
   4. We also know that having sensitive conversations around approaching adulthood is difficult, particularly with those who are non-disabled or there is a risk of causing upset i.e. parents. Our research amongst others, embodied how

feelings of mutual understanding can be incredibly helpful, one of the many reasons we support co-production research.

8. recruitment of participants, data collection and analysis
   1. Pathfinders set out to better understand transition, particularly the lived experiences of entering adulthood for people with DMD. We also wanted to go beyond the idea of a ‘top-down’ research approach with only some inclusive elements. The entirety of the research process was directed by those with neuromuscular conditions, supported by the team of university academics.
   2. The Peer researchers received training and mentoring. They conducted 15 semi structured interviews across the UK and contributed to data analysis and report writing.
9. Key areas of the report
   1. This diagram shows the five key areas of our research. I will now give you a brief overview of each area.
10. slide 9: Education and beyond
    1. Participants shared diverse memories of their time in education. Some felt valued and supported, while others faced disability associated isolation and bullying. Many continued their education in college and university, viewing it as a positive step towards social inclusion and personal growth.
    2. However, the practical steps to attend university with the correct support, was complex due to funding and care arrangements. For some University was a success, it provided opportunities for socialisation, greater support from those outside of the family and an opportunity to build confidence.
    3. We saw similar challenges in the world of employment. Many described a strong desire to work but faced significant barriers.
11. The Importance of Confidence
    1. Participants often wished for more confidence. They recognised its impact on their choices and interactions. Over time, they sometimes found to increase their confidence through their adult experiences.
12. Changing Bodies
    1. Participants described their fatigue and muscle weakness as affecting their daily routines and emotions. However, many embraced this as a ‘normal’ life and tried to stay positive. Relationships with family, friends, and healthcare professionals also played a crucial role in managing these challenges.
        
13. Independence
    1. Independence, as described by participants, involved milestones which are typically based on our social norms. However, at the core of independence,  participants described independence as being more complex and subjective than this. There was an underlying emphasis on moving towards greater autonomy, choice and control.
    2.  Our participants were aware that many of these typical defining social norm achievements of being an independent adult, are not always desirable, accessible or attainable to everyone with a disability.
14. Society
    1. Participants talked about their place in society. There was an emphasis on “us” – disabled people - and “them” – non-disabled people. We heard examples of feeling pushed out by society. Sadly, we also heard about physically damaging attempts to fit in order to appear “normal”, for example prolonging walking although experiencing excruciating pain.
15. Discussion 1
    1. Relating to policy and practice, our findings clearly demonstrate that adult DMD population should understood and supported beyond the medical context. Advances in education and social care are somewhat lagging behind the medical advances, something that’s been cited in many other research studies to date (Vanagė et al 2021).
    2. Taken together, the findings exploring the psychological effects of physical changes on the body and the narrative around confidence, demonstrate a need for psychological support and intervention. Many of our participants described experiencing high levels of anxiety. Yet only one participant spoke of the professional help they received with their mental health.
    3. Similarly, to previous research, participants described a desire to work in paid employment. Although very few were actually employed at the time of the interview. This is an area for further investigation, it would be interesting to examine the discrepancy between desires to work and unemployment rates in this wider neuromuscular group.
        

 

16. discussion 2
    1. If we apply a more theoretical lens, we can see that, although there is a place for improving the confidence of young adults through interventions, it also crucial to examine the supporting societal structures in which young people are part of as they transition into adulthood.
    2. We see that the notion of independence is often embedded in social norms. But this idea isn’t entirely flexible enough to capture the meaning of independence in the context of increasing dependence on others. It could be helpful to examine the discourse around independence and adulthood across multiple theoretical and stakeholder lenses.
17. Summary/thank you.
    1. Thank you for your time today. I hope you have found this presentation useful and interesting; I look forward to answering questions with the rest of the speakers later.

References (Harvard)

Vanagė, D., Valickienė, R.P. and Serapinas, D. (2021) ‘A QUALITATIVE SYSTEMATIC REVIEW OF LIVING WITH DUCHENNE MUSCULAR DYSTROPHY’, Social Inquiry into Well-Being, 19(2), pp. 63–82. doi:10.13165/sd-21-19-2-05.

Donaldson, A. et al. (2020) ‘Achieving life milestones in Duchenne/Becker Muscular Dystrophy’, Neurology: Clinical Practice, 11(4), pp. 311–317. doi:10.1212/cpj.0000000000000970.

Hamdani, Y., Mistry, B. and Gibson, B.E. (2015) ‘Transitioning to adulthood with a progressive condition: Best practice assumptions and individual experiences of young men with Duchenne Muscular Dystrophy’, Disability and Rehabilitation, 37(13), pp. 1144–1151. doi:10.3109/09638288.2014.956187.

TBC

(similar results as Gibson, 2014 – who said young people had similar goals and aspirations to their nondisabled peers).

“Participants did not question the value of pursuing independence even if it’s might require compromising the interpersonal connection, trust, and quality of care they enjoyed with family members. Rather they mostly positioned the pursuit as normal for their life stage and present themselves as working towards achieving independence to the extent possible” HAmdani et al. 2015

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GARETH THOMAS
Slide 1

Hi everyone. Thanks very much for coming today. My name is Gareth Thomas and I’m a lecturer at Cardiff University. Today, I’m talking about a project – funded by the British Academy – that I’ve been undertaking for the past year. The focus has been on how people with learning disabilities dismantle deficit configurations of disability, and craft alternative narratives that celebrate their worth and humanity. I’ve been carrying out ethnographic fieldwork at a theatre company for actors with learning disabilities and a community café, and a few dance and drag groups run with people with learning disabilities. I’ve also carried out some interviews with people with learning disabilities, their parents, and those involved with disability arts.

My talk today, drawing on my ethnographic fieldwork at the café, will consider how people with learning disabilities are, or in some cases are not, treated with respect and dignity. To do this, I draw upon theoretical resources from both critical disability studies (or CDS) and the work of Erving Goffman.

Slide 2

Best known for his analyses on the quirks of human interaction and what is often referred to as a dramaturgical analysis of everyday life, Goffman cuts a divisive, and some cases denounced, figure in disability studies. His landmark text Stigma, published in 1963, is often the source of this critique. In this book, Goffman argues that certain social groups, disabled people included, are figured as, in his own terms, ‘blemished person[s], ritually polluted, to be avoided, especially in public places’. These persons, who are of ‘a less desirable kind’, are seen as tainted, as possessing ‘an undesired different from what we anticipated’.

Goffman’s analysis is maligned within DS, and also within more recent sociological scholarship such as Imogen Tyler’s recent book, for several reasons. This includes: his attitude of detachment and othering tone / flattened language; his short-circuiting of stigma’s operations (i.e. he disregards ‘structure’ and doesn’t consider where stigma ‘comes from’); he assumes disability as deviance (i.e. there is a lack of positive account of difference); he overlooks what is meant by ‘norms’; his analysis is apolitical, ahistorical, and essentialist; he blunts any consideration of resistance; his focus on coping strategies (i.e. ‘stigma management’) leaves an unjust world intact, and; he doesn’t consider the role of power.

Whilst I agree with some of these criticisms, I have issues with others. For instance, I would urge anyone accusing Goffman of dismissing power to read his book Asylums and tell me power is not at play here. There are also more sympathetic readings of Goffman within disability studies, such as from Heather Love and Rosemarie Garland-Thomson. For me, I believe one of Goffman’s key acknowledgements in stigma is often overlooked: that is, how stigma is a product of interaction. He doesn’t state that stigma simply exists or is an attribute belonging to a person, but rather he shows how stigma emerges in the glances, the stares, comments, the minutiae of everyday life. This is what I want to consider in this presentation, and how combining his ideas with the principles and sentiments of CDS can elevate our, or at least here my own, analysis.

Slide 3

I will do so with reference to observations of a community café run by/with people with learning disabilities and people without learning disabilities. This café takes place across the week in different locations, though I’ve been observing their busiest setting once a week for the past 6 to 7 months. The intention of this café, by their own account, is to promote equality of opportunity, to celebrate diversity, to practice inclusion, and to offer a space for friendship. I was interested in how these statements and principles happened on the ground. I can provide more methodological information afterwards to anyone who is interested, but I’ll move onto my theoretical and empirical claims for the remainder of this presentation.

Slide 4

My claim, again, is that convergence is possible between the work of Erving Goffman and disability studies. To consider how ideas of inclusion, diversity, and opportunity were accomplished as part of the interaction order, I turned to Goffman’s work on deference and demeanour. Within our interactions, Goffman states that people are allotted ‘a kind of sacredness that is displayed and confirmed by symbolic acts’. There are rules of conduct that guide our activities; it creates obligations and expectations. One example is myself as a presenter and you as an audience; you are affording me respect by providing me this platform to discuss my ideas, and your role is to remain silent and to sit back and, drawing on Goffman’s work on ‘the face’, display – perhaps even feign! – an interest in what I am saying.

Slide 5

This ceremonial order of interaction, for Goffman, contains some basic elements, which includes ‘deference’ and ‘demeanour’. Goffman describes deference as the ways that appreciation is conveyed to others. It is a way to celebrate and confirm a relation to another person. Individuals may desire or earn deference, but, Goffman claims, it must be received by others. This implies a ‘sentiment of regard’ for a recipient that demonstrates the reciprocal nature of social interactions. Deference takes many forms, but it can be broadly grouped into what Goffman calls ‘avoidance rituals’ and ‘presentation rituals’. Avoidance rituals involves a person keeping a distance from someone, to evade violating what Simmel calls the ‘ideal sphere’ around the other. He suggests this might include avoiding topics which may be painful, embarrassing, or humiliating to the other person (Simmel, he notes, calls this ‘discretion’). In contrast, presentation rituals occur when an individual makes ‘specific attestations to recipients concerning how [they] regard them and how [they] will treat them in the on-coming interaction’. Presentation rituals include salutations, invitations, compliments, and minor services, such as helping people out.

Slide 6

In contrast to deference, Goffman describes demeanour as ceremonial behaviour which expresses to others that a person is of a ‘desirable’ kind, such as through ‘deportment, dress, and bearing’, who is deserving of others’ deference (1956: 489). To acquire deference, a person must demonstrate the appropriate demeanour toward others. He says, in North America, a ‘demeaned’ person expresses attributes such as sincerity and discretion, modesty, and having self-control over emotions and desires. A demeaned person, then, can be relied upon to be an appropriate interactant. Goffman offers examples of both good and bad demeanour in his hospital observations in his book Asylums. For example, on Ward A, ‘standards of demeanour were maintained that seem to be typical in American middle-class society’, such as not showing over-eagerness when eating (e.g. eating too quickly, taking more than their fair share). On Ward B, bad demeanour (by middle-class standards) was illustrated through meal-time behaviour, such as grabbing an extra piece of food or being perceived as overeager through taking their share all at once (instead of waiting until one serving had been eaten). Belching, flatulence, swearing/cursing, and messily manipulating food ‘expressed to the staff and to one another that their selves were not properly demeaned ones’ (1956: 490). He argues that there is considerable overlap between deference and demeanour, but they are conceptually separate.

Slide 7

What I’ve found is that Goffman’s analysis of deference and demeanour has become useful for understanding how, in the café, interactional encounters are organised and imbued with acts of both respect and disrespect. Mundane moments – from drink-making to money-taking, from soliciting orders to serving purchased items – are carefully accomplished in ways that respect what Goffman calls the ‘territories of the self’ and allows for the meaningful participation of people with learning disabilities in the cafe. This includes, for instance, offering lots of praise and encouragement, getting people with learning disabilities to do tasks like cleaning tables and making drinks (rather than the people without learning disabilities doing it), and affording people time and space. Regarding the latter, there was an informal rule that customers were seen as agreeing to here, where it would take longer to take an order, to make a drink, and to receive an order than perhaps they are used to in Costa or Starbucks. These expectations, as a kind of interactional leeway, connects to the concept in CDS of ‘crip time’, that is, how social clocks are bent to meet bodies and minds. Drawing on the work of Alison Kafer, we can see how the normative is cripped; our notions of what can and should happen on time is adjusted in this space. This destabilisation of societal and cultural clocks, I argue, as an expectation in the café, acts as a mode of showing deference to people with learning disabilities. I’m going to give one further example of an act of deference here, when an order is being taken.

Slide 8

I am standing behind the counter. A customer approaches. Mark (who has a learning disability) walks to the counter where the pen and post-it notes, mobile phone, and card machine are. Mark asks the customer what they would like. As he does, Lauren (who doesn’t have a learning disability) notices this and moves to stand to the right side of Mark. The customer asks for a cappuccino and cup of tea. Mark repeats the order back to the customer as he writes on the sticky note. The writing looks like a series of scribbles and is not legible, to me at least. Lauren takes the sticky note from Mark. As he uses the phone to record the order, Lauren writes down ‘cappuccino’ and ‘cup of tea’ underneath Mark’s writing. She does this on the counter behind Mark, seemingly out of sight. Once this is done, she turns back to the front of the till and helps Mark to place the order through the phone. The total price is read out by Mark. The customer places the money on the counter and Mark opens the money tin. Lauren talks to Mark about what coins are needed for the customer’s change. The customer takes the change, thanks Mark, and leaves. Mark places the sticky note on the back counter and shouts – in the direction of Lauren and Robert (who are making drinks) – ‘I have another order for you. It’s a cappuccino and tea’. Lauren thanks Mark.

Here, space and time was afforded by Mark to take the order. It was seen as vital for Mark to do this, despite his writing not being legible to me and the team. Rather, Lauren, in a clandestine way, made affordances to ensure that Mark was accorded deference here. The customer also acts in a way that is consistent with showing good demeanour in this space. This is one of many examples of this happening in the café. But what about moments were deference was not given to people with learning disabilities, and where customers did not show the appropriate demeanour?

Slide 9

What I found was that, at certain moments, people with learning disabilities were not, in Goffman’s words, allotted ‘a kind of sacredness that is displayed and confirmed by symbolic acts’. Transgressors, in this case customers, disturbed the expectation that people should ‘hold hands in a chain of ceremony, each giving deferentially with proper demeanour to the one on the right what will be received deferentially from the one on the left’. To be specific, I argue the conduct of some customers aligns with tragic and deficit understanding of disability. First, I observed several customers interfering with someone with a learning disability, seemingly based on the assumption that they could not do a task. One example is taking orders, where some customers overstepped by pressing buttons for the server, or they reached into the till themselves to obtain their change. Two related but distinct examples were when people with learning disabilities were ignored and where they were treated by what the team called ‘the bless them brigade’.

Slide 10

Mark is talking to Kate (who does not have a learning disability). An older woman approaches both of them. The older woman says, ‘Excuse me?’, looking in the direction of Kate. Mark says, ‘Can I help you with something?’ The woman looks in the direction of Mark; she slightly smiles, takes his hand, and pats it gently – without saying a word. She then turns back to Kate and asks ‘I am going to a class today and I would like to put in an order. Do I just do that now or can I decide after the class?’ ‘It’s up to you’, Kate replies. ‘You can do either’. ‘OK, thank you dear’ replies the woman, who then walks off. Mark is still standing nearby; he seems a little confused by the interaction, before telling Kate, ‘I’m going to check to see if there are more orders’.

This talking past people with learning disabilities was observed on several occasions. When a person was seen as visibly disabled, this occasionally caused customers, I would assume without intent, to disregard the person entirely. This breach of the order in this café appears connected to the famous cliché ‘Does he take sugar?’, where disabled people are not cast within the drama of the interactional exchange. It can also be seen, if we are to borrow from the vocabulary of CDS, as being part of an everyday ‘disablism’, that is, the exclusion of people with physical, sensory, and/or cognitive impairments, and ‘ableism’, i.e., the ideologies upon which the able-bodied, individual, and productive citizens are based. Here, we can see how disablism and ableism play out in the microscopic interactions of everyday life.

Slide 11

A large order needs delivering to a table. Lauren asks me if I can help take the tray full of drinks over to the customers, as ‘it’s a bit too heavy for Mark’. I oblige. Mark turns to me and says, ‘I’ll come over with you and help’. We approach the customers; a large group of older women who are regular customers. Mark reads out the names of customers on the labels attached to each cup. Each customer gestures to me when their name is read out. On several occasions, I deliver the cup and I am asked for extra items (e.g. sugar, spoon) or to clarify an order (‘is it soya milk in this?’). All questions and queries are directed to me rather than Mark, who stands nearby. […] As we walk away, I hear a few of the women say, ‘bless him’, whilst looking in the direction of Mark. The comments are later repeated in the presence of Paul, another member of the team who has helped to serve more drinks to the customers. Lauren and Melanie (who do not have a learning disability) have previously referred to customers treating members of the team in this way as ‘the bless them brigade’.

Thie ‘bless them’ discourse is reviled by Lauren and Melanie, members of the team who do not have learning disabilities, yet it often remains unchallenged on account of – I assume – not wanting to cause disquiet and to enact a sense of professionalism. It also relates to other conversations I’ve had throughout fieldwork, where people with learning disabilities lamented infantilising treatment of them by others. They were not to be blessed or pitied, they told me. Yet, here, in a space designed to be inclusive, people with learning disabilities were sometimes treated with a kind of interactional violence. The goals of inclusion and showing diversity are arguably dismantled, or at least threatened, in the face of such reactions, whether intentional or unintentional. Again, this can connect to ideas in CDS around disablism and ableism, which are part of the fabric of the normative interaction order. Yet it also connects to Goffman’s claims about the reciprocal nature of interaction; team members can act with good demeanour, for instance, but this does not mean that they are accorded deference by customers.

Slide 12

To conclude this talk, I ask: can disability scholars continue to make use of Goffman’s work? Ten years on from a plenary at the Society for Disability Studies Conference, where panellists debated this very question, I hope to have highlighted the enduring value of Goffman’s scholarship, yet also how it can be elevated by engaging with ideas from CDS. I want to conclude by urging CDS to not erect rigid boundaries which leaves little room for collaboration. My worry is scholars will continue to buy into the worldview of a single discipline in ways that encourage insular scholarship (i.e., preaching to the converted) and nourish silos. My research over the years has engaged with concepts and ideas from CDS as well as from (medical) sociology, anthropology, and science and technology studies. My point is I want to consider how CDS can enter into meaningful conversation with other disciplines. Both engaging with ideas from divergent sources and taking ideas from CDS into new circles is vital.