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
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: