Webinar: Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability

A medical textbook with the text out of focus. There's a stethascope on top of the textbook

Free webinar 24th May 1-3pm BST

This webinar brings together academics and activists working in relation to disbelief and disregard in medicine, chronic illness and disability. It will focus in paticular on the relationship between disbelief/disregard and energy, understood in two ways: first in relation to chronic illness/disability that involves energy limitation, and secondly in relation to the ways in which activism and advocacy in relation to medicine, chronic illness and disability takes, and depletes, energy.

Organised by: Dr Bethan Evans, Dr. Lioba Hirsch and Dr Morag Rose (University of Liverpool), Catherine Hale and Alison Allam (Chronic Illness Inclusion), Dr Ana Bê Peirera (Liverpool Hope University).

Speakers include (in addition to the organisers): Brianne Benness (No End in Sight), Dzifa Afonu (Healing Justice London), Leonora Gunn (University of Leeds and Leeds Disabled People’s Organisation), Katherine Cheston (Durham University), Aaliyah Shaikh (City University, London), Dr Emma Sheppard (Coventry University), Aleyah Babb-Benjamin (National Voices), Jenny Ceolta-Smith (Long Covid Support). More information on the speakers available below.

Format: Recorded presentations from speakers will be made available ahead of the event for people to watch at their own pace. If you have already registered for the webinar you should have received an email via eventbrite on 11th May with the link to the page hosting the videos. If you register from 11th May onwards, check the registration confirmation for the link to the site with the videos. The event itself will involve two roundtable discussions, with opportunities for the audience to ask questions via a Q&A box.

To register: https://www.eventbrite.com/e/challenging-disbelief-and-disregard-tickets-332830483937

Further information:

The Disabled People’s Organisation Chronic Illness Inclusion have, through vital research on Energy Limiting Chronic Illness (ELCI) developed the term ‘systemic disbelief’ to identify the culture of disbelief and disregard that is encountered by people with ELCI in interactions with a range of institutions: healthcare, work, welfare, social services, leisure, etc. This disbelief creates barriers to equality and inclusion for people with ELCI, and relates to even fundamental disagreement over whether conditions are biophysical or psychosomatic. Whilst documenting the extent of this in relation to ELCI is relatively new, this disbelief and disregard reflects longer histories of patriarchal, ableist and racist epistemologies in medicine in which people’s knowledges and experiences of their own bodies have been downplayed or ignored, particularly for women. This is exacerbated further for women of colour through the intersection of sexist and racist histories of medicine that have led to the systematic denial of people of colour’s pain. For trans and nonbinary people, there are further barriers to accessing adequate healthcare, including significant ignorance, exclusion and oppression in healthcare settings.

Energy is also important in relation to institutional disbelief and disregard more broadly due to the additional energy it takes to navigate structural forms of prejudice and discrimination. That might include acknowledging ‘crip time’, the additional time and energy it takes to navigate spaces and structures that are designed for bodies that move and are shaped differently, or, the exhaustion that comes from hitting multiple institutional barriers. As Sara Ahmed (2013) explains, challenging institutional discrimination often leads to ‘feeling depleted’ in a material and somatic sense because social privilege means that “less effort is required to pass through an institution for bodies that fit”. Here we are interested in the ways in which the experiences of disbelief and disregard in medicine in relation to intersecting forms of discrimination deplete energy.

Some indicative questions are:

  • How does disbelief and disregard manifest in relation to medicine, chronic illness and disability?
  • How is medical disbelief and disregard shaped by intersecting forms of oppression?
  • How are contemporary forms of disbelief and disregard in medicine rooted in or divergent from historical injustices in medicine, chronic illness and disability?
  • What energy does it take to challenge this disbelief, and to try to be heard in the context of institutional disregard?
  • How do we challenge this disbelief and disregard? What strategies have been successful?
  • How can the community of people living with chronic illness find ways to influence the training and practice of health professionals?
  • What action points are there for activism, advocacy, policy change and research?

Funded by: University of Liverpool Power, Space and Cultural Change Research Group and Centre for Health, Medical and Environmental Humanities

Speaker biographies:

Dzifa Afonu describes themselves as firstly a creative spirit who loves playfulness. They are clinical psychologist by training bringing to this title a decolonising and deconstructing energy. As an artist they love the art of every day life, the creative nature of the human mind, and communication through image colour and metaphor. They are also dedicated to supporting those in frontline work with marginalised people. With over 20 years of experience in activism and 10 years experience working in the NHS they bring a personal insight into the possibilities, limitations and places for growth in both institutional and grassroots organising systems. They are interested in the ways we can bridge the gaps between work and play and grappling with finding new ways of building community and supporting leadership that step away from grind culture and create opportunities for real freedom. 

Alison Allam is a founding member of the management committee of the Chronic Illness Inclusion. She completed her PhD in Social Policy in 2016 at University of York and prior to that a MA in Disability Studies from Leeds University. Alison’s areas of interest are primarily around disability and ableism in health and social care. Alison is firmly committed to the principle of ‘Nothing About Us Without Us’ and as such has an active interest and commitment to ensuring meaningful patient and public involvement is embedded into the research process. She has lived with multiple long-term health conditions and energy impairment since her teenage years. Alison is doing a joint talk with Catherine Hale. Their talk is titled ‘‘The Wilderness of Medically Invisible Disability’. 

Aleyah Babb-Benjamin is Outreach and Insight Manager at National Voices. In her role, she creates the conditions, relationships and working practices that enable us to hear from people who are often disbelieved and underserved by existing health and care models. In leading on key health inclusion projects within National Voices, she turns our work with often marginalised communities into actionable insight and learning to enable equitable access, experiences and outcomes. Aleyah’s video talk will look at health inequalities and disbelief within the context Long Covid, touching on the emerging evidence that many living with Long Covid meet the diagnostic criteria for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)  – a long ignored, disbelieved and stigmatised condition. We will also mention women’s health (e.g. endometriosis) and speak generally about how the intersectionality of different social determinants make disbelief a layered and complex issue. At National Voices we know that these conversations should have a higher place on the agenda, and recognise that truly listening to people is the only way to authentically validate their experiences. 

Ana Bê is a lecturer in Disability Studies at Liverpool Hope University and member of the Centre for Culture and Disability Studies. Her interdisciplinary work is located primarily in disability studies, feminist theory, education and health studies. Her work is concerned primarily with issues of social justice and social change with a particular focus on disabled people and people living with chronic illness. Her research has been published in numerous international peer-reviewed journals and is also represented in important edited collections. She is co- editor of two forthcoming journal issues: an issue on Representations of Chronic illness for the Journal of Literary and Cultural Disability Studies, and an issue on Disability and Lessons from the Pandemic for the journal Social Inclusion. More about her can be found on her website: www.anabeonline.com. Ana will be chairing one of the discussions during the webinar. 

Brianne Benness: is the host of No End In Sight, a podcast about life with chronic illness, and the creator of #NEISVoid, an active community hashtag for questions and conversations about life with chronic illness across diagnosis and diagnostic status. Brianne is also a co-founder of Stories We Don’t Tell, a candid Toronto storytelling event, podcast and anthology. Brianne currently lives in Massachusetts, US, and holds a post-graduate certificate in Media and Medicine from Harvard Medical School as well as a Master of Architecture from the University of Michigan. Some of her recent work includes her TEDx talk “Disease Begins Before Diagnosis” and a Spring 2021 short course at Grinnell College “Personal Storytelling for Social Impact.” Brianne will be talking about systemic disbelief throughout the diagnostic process for people living with energy-limiting chronic illness, drawing on anecdotes and oral histories that many different chronically ill people have shared on both the No End In Sight podcast and using #NEISVoid on social media. 

Jenny Ceolta-Smith is an occupational therapist and social policy researcher. Her areas of specialism are vocational rehabilitation and the Department for Work and Pensions’ employment support policies, provision, and frontline practice. Jenny has been living with Long Covid for two years. She is a member of Long Covid Support and advocates about work which is defined broadly and includes paid work, volunteering, caring and advocacy. She has led on the group’s written evidence submissions for the UK Parliamentary inquiries on Employment Support and Health Benefits and response to the Shaping Future Support: The Health and Disability Green Paper. Jenny’s video talk is titled ‘Long Covid Support Employment Advocates – combining professional expertise with lived experience to create change in UK policy, provision, and frontline practice’. 

Katherine Cheston: I am a PhD student based at the Institute for Medical Humanities, Durham University. My research focuses on complex, poorly-understood medical conditions and investigates how these conditions might lead to shame and shaming. I explore accounts of these experiences – expressed in published memoirs, as well as in interview testimony – in order to examine this particular kind of shame and how it shapes the lives of those who live with these conditions. My PhD had its genesis in my many years of experience working closely with charities, advocacy organisations and patient groups in the area of complex, poorly-understood medical conditions. I have continued to work in partnership with people with lived experience throughout my doctoral studies, adopting an engaged research approach. My current research is generously funded by Wellcome. Katherine’s video talk is titled: ‘Living with complex, poorly-understood medical conditions: Experiences of shame and stigma’.  

Bethan Evans is Senior Lecturer in Human Geography and Co-Director of the Centre for Health, Medical and Environmental Sciences at the University of Liverpool. Her research expertise lies at the intersection between the medical humanities and feminist, poststructural, post-medical, embodied, and children’s geographies. She has worked in collaboration with fat activists on a range of projects which question the politics of anti-fat discourse and policy, and explore the lived experience of fat embodiment. She’s currently working on a BA funded project with Chronic Illness Inclusion on Disbelief and Disregard in relation to Gendered Experiences of Energy Limiting Chronic Illnesses in England. Bethan is fat and has an energy limiting chronic illness. Bethan’s video talk is titled ‘Disbelief, Disregard and Medical Fatphobia’ and explores the intersections between embodied experiences of fat and chronic illness, illustrated by initial analysis of the data being analysed as part of the BA project. 

Leonora Gunn is a philosophy PhD candidate at the University of Leeds, writing about the social model of disability. She also serves on the committees of Leeds Disabled People’s Organisation and Chronic Illness Inclusion. She has had ME/CFS since she was 16 and is passionate about connecting chronic illness activism with the broader Disabled People’s Movement. Leonora’s video talk is titled: ‘Doctor Knows Best: Epistemic Injustice in Women’s Healthcare’. 

Catherine Hale is the Founder and Director of Chronic Illness Inclusion. CII’s mission is to reshape perceptions, policy and practice towards energy limiting chronic illness and chronic pain through a disability rights framework. Previously she worked as an independent disability policy researcher and activist, focussing on user experiences of disability benefits, employment support, and social care. Catherine has lived with an energy limiting condition since 1988, which has resulted in her exclusion from the worlds of academia and employment for many years. Catherine is also Research Lead for disability inclusion at Astriid charity. Catherine is doing a joint talk with Alison Allam. Their talk is titled ‘‘The Wilderness of Medically Invisible Disability’. 

Lioba Hirsch: I am a qualitative and archival researcher with an interest in the colonial and antiblack entanglements of Western biomedicine and global health management. My research has focused on the historical development, contemporary management and colonial aftermath of British health interventions in West Africa. My PhD thesis (UCL Geography & Institute for Global Health) analysed the British-led international Ebola response in Sierra Leone in the wake of British colonialism and the transatlantic slave trade. More broadly my work is situated at the intersection of health & development geographies, Black Studies and colonial history. I also do critical work on humanitarianism, medicine and racism. In my short video, I read a brief reflection on disbelief and disregard. Rather than representing an instance of not being believed by a medical authority, I relate how feelings of disbelief on my part protected me from medical racism. This is not an academic presentation, rather in the reading/writing I grapple with the carelessness sometimes exhibited by medical professionals in their dealings with Black people. 

Morag Rose is a lecturer in Human Geography at The University of Liverpool. Her research takes an intersectional feminist approach to public space, gender, and critical disability studies. Morag is also a walking artist-activist, and key themes across her work are access, inclusion and equality in urban spaces. Morag will be chairing one of the sessions during the webinar. 

Aaliyah Shaikh is currently completing a PhD in Health Psychology on ‘British Muslims’ experiences of pregnancy and birth’ at the School of Health Sciences, City, University of London where she also founded and co-leads a decolonising health research study group. She previously graduated from the University of Cambridge with an MEd in Psychotherapeutic Counselling and trained as a certified clinical trauma therapist. Aaliyah’s research interests include: Muslims’ experiences of mental health, unseen disabilities and chronic illness – in particular the treatment of South Asian Muslim women with ‘medically unexplained symptoms’ – and intergenerational trauma. Aaliyah will be speaking about the emotional and psychological trauma of living with unseen illness in a society that has little understanding of its wide-reaching impact. Aaliyah will also touch on the concept of ‘Begum syndrome’ and the colonial legacy of emotional and psychological trauma imprinted into the bodies of South Asian Muslim women. Her talk is titled: “The invisible within the invisible”. 

Emma Sheppard is a lecturer in Sociology at Coventry University. Her research takes a critical disability studies approach to explore crip time, chronic pain and fatigue, and their relationship to embodied experience.  She has lived with chronic pain for fourteen years. Emma’s video talk is titled ‘Crip Time and Crip Joy’.


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