From across the pond.
Devva Kasnitz, PhD
Devvaco Consulting, 1614 D St. Eureka, CA 95501-2345 -- email@example.com or firstname.lastname@example.org
Adj Professor, City University of New York—School of Professional Studies—Disability Studies
Text: 510-206-5767, She/Her/Hers
From: The Disability-Research Discussion List DISABILITY-RESEARCH@JISCMAIL.AC.UK On Behalf Of Ana Bê Pereira
Sent: Thursday, May 5, 2022 12:05 PM
Subject: Webinar: Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability
Hello everyone, please see information below about the webinar we are organising on the topic of Challenging Disbelief and Disregard in relation to Medicine, Chronic Illness and Disability. There will be British Sign Language interpretation and live captions.
Please do also share on your networks. Registration is free using the link below.
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 Pereira (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).
Format: Recorded presentations from speakers will be made available ahead of the event for people to watch at their own pace. The event 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 https://www.eventbrite.com/e/challenging-disbelief-and-disregard-tickets-332830483937
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 https://feministkilljoys.com/2013/11/17/feeling-depleted/ 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?
Dr Ana Bê Pereira
Lecturer in Disability studies
Centre for Culture and Disability Studies
Liverpool Hope University
Selected Recent Publications:
Bê, A. (2020) “Feminism and disability: A cartography of multiplicity.” In: N. Watson and S. Vehmas
(eds) Routledge Handbook of Disability Studies. Abingdon: Routledge. pp. 421-435.
Bê, A. (2019) Disabled people and subjugated knowledges: new understandings and strategies developed by people living with chronic conditions, Disability & Society, DOI: https://doi.org/10.1080/09687599.2019.1596785 https://doi.org/10.1080/09687599.2019.1596785
Bê, A. (2019) Ableism and disablism in higher education: The case of two students living with chronic illnesses. ALTER, European Journal of Disability Research, https://doi.org/10.1016/j.alter.2019.03.004 https://doi.org/10.1016/j.alter.2019.03.004
Bê, A. (2016) Disablism in the lives of people living with a chronic illness in England and Portugal, Disability & Society, 31:4, 465-480, DOI: 10.1080/09687599.2016.1181048
End of message This Disability-Research Discussion list is managed by the Centre for Disability Studies at the University of Leeds (www.leeds.ac.uk/disability-studies http://www.leeds.ac.uk/disability-studies ). Enquiries about list administration should be sent to email@example.com mailto:firstname.lastname@example.org Archives and tools are located at: www.jiscmail.ac.uk/lists/disability-research.html http://www.jiscmail.ac.uk/lists/disability-research.html You can VIEW, POST, JOIN and LEAVE the list by logging in to this web page.