This seminar happened on Saturday 1 September 2012 as part of DaDaFest. It stimulated discussion about the impact of changes on peoples’ day-to-day lives so that the lived experience of life-limiting illness and related phenomena is not always one of loss.
Presenters included Professor Margrit Shildrick, Dr Janet Price (DaDaFest), photographer Ashley Savage, Professor Carol Thomas (Lancaster University) and Dr Ria Cheyne (Liverpool Hope University) and David Roche.
Watch a short film about the event, including subtitles:
Resources from the day have been made available here for those who could not attend the event and as a record of the discussions that took place. If you have any comments to add or discuss, please use the ‘reply’ function below.
Contested Ideas about Disability, Illness and Identity in Sociology – Keynote address by Professor Carol Thomas
Cancer Sucks - Interview
Changing Capacities, Changing Identities: Disability in Science Fiction – paper by Dr Ria Cheyne
Coffin Club U3A – History and Information
The event was organised with the University of Liverpool’s New Thinking on ‘Living with dying’ Research Network.
Pictures from the day:
Comments from people attended on the day included:
‘Very pleased to see theory and practice and creative innovation working together – more please!’
‘Thoroughly enjoyed festival. It gave me a new outlook.’
‘Very unique event. Academic discussions and artistic exhibition are combined very well. Impressive and attractive.’
New Thinking on ‘Living with Dying’ is an Arts and Humanities Research Council (AHRC) funded Research Network based in the University of Liverpool’s Philosophy Department. Its members (who include both academics and practitioners) are interested in exploring the implications of increases in life expectancy for people with ‘life-limiting’ conditions and the network’s activities aim to inform healthcare practice and improve quality of life for those living with such conditions.
Biographies of Event Contributors
Liz Bentley is a comedienne, host, programmer, producer, musician, mother, psychotherapist and insomniac. Liz sought psychotherapy at 23. Struggling with bulimia, drugs, relationships, abuse and the diagnosis of Multiple Sclerosis, her therapy allowed her to be creative and provided a way of making sense of her difficulties.
During her analysis she trained as a counsellor. She presently works as a psychotherapist and supervisor in primary care in Southwark, has a private practice and is one of the quirkiest voices on the UK’s spoken word scene.
Since winning Short Fuse Poetry Idol, then Poetry Idol the Rivals in 2003, Liz’s writing and performance has gone from strength to strength. Armed with her Casio keyboard and ukulele she has performed at events across the UK including Edinburgh. Liz’s experiences of mental health and multiple sclerosis have taken her into disability arts and she strives to smash the apartheid between disability and mainstream arts.
Dr Ria Cheyne is a lecturer in Disability Studies at Liverpool Hope University. Her background is in English Literature and her research focuses on representations of disability and illness in fiction, especially popular genres such as science fiction, romance, horror and crime. She is interested in how these fictional representations of disability reflect and shape wider public conceptions of health, disability, and illness; the effects they might have upon the world; and their usefulness (or otherwise) for disability activists and allies trying to challenge social barriers and inequalities.
Dr Amy Hardie is a documentary director and head of research in the Scottish Documentary Institute, University of Edinburgh. Her most recent documentaries are in medical humanities, Tuesdays, with a group of women with secondary cancer as they meet at Dundee Maggies Centre, and Sometimes Singing is Everything, in Strathcarron Hospice. This year her science feature, Stem Cell Revolutions received the best international science documentary prize in its first film festival, the Milan’s Videre La Scienza.
Amy’s first feature The Edge of Dreaming was selected for 28 international festival presentations, 280 international screenings; translated into 12 languages: Film of the Month in Spain and France; has theatrical distribution in UK and US and Spain, Argentina, Ecuador Broadcast in Netherlands, Estonia, France, UK, US, Germany. It was awarded the Grand Jury Prize, Kiev International Film Festival She has authored two papers exploring documentary and audience: Rollercoasters and Reality: A Study of Big Screen Documentary Audiences. Vol 5, and Symbolic Cinema and the Audience, Vol 9, both in Participations: Journal of Audience and Reception Studies. Current theorical interests are the use of a camera in palliative care: Movie-making as mirroring.
Janet Price is a feminist and disability writer and activist from Northern England who is on the Board of Liverpool-based DaDaFest which works to advance disability justice through the arts. She advocates queer crip politics in her work on issues of sexuality, disability, and social justice with organizations in UK, India, and at the international level. Also a member of the Gender and Health Group at Liverpool School of Tropical Medicine, her academic interests include postcolonial feminist perspectives on health, disability & embodiment.
Gillian Howie is a Professor in Philosophy at the University of Liverpool and Director of the Institute for Feminist Theory and Research. She is author of Essential Reorientations: feminism and dialectical materialism (2008), Deleuze and Spinoza: Aura of Expressionism (2002), editor of Critical Quarterly’s special issue on higher education, ‘Universities in the UK: Drowning by numbers’ (2005) and editor of Women: A Cultural Review’s special issue on ‘Gender and Philosophy’ (2003).
David Roche is an inspirational humorist, motivational speaker and performer who has transformed the challenges and gifts of living with a facial disfigurement into a compelling message that uplifts and delights audiences around the world. He published his first book, The Church of 80% Sincerity in February 2008. David presents keynote speeches, motivational humour and entertainment at conferences, meetings and fundraisers for corporate events, and for association, non-profit, educational and disability organizations. He has performed his signature one-man show, The Church of 80% Sincerity, across the U.S. and in Canada, England, New Zealand, Australia and Russia.
David appeared at the Clinton White House and headlined at the Olympics Arts Festival in Sydney, Australia. David and his wife Marlena Blavin present Love at Second Sight, a program for adolescents about appearance, acceptance and diversity. David has been featured in films, including Shameless, by Bonnie Sherr Klein and The Perfect Flaw, by Mike Grundmann,
Ashley Savage has been a photographer since 1989. His work has been selectively exhibited and published both in the UK and abroad and is included in public and private collections. In 2003, Ashley graduated from the University of Westminster with a First Class Honours Degree in Photography. Stylistically his work vacillates between the genres of Art and Documentary, often exploring issues relating to gender, sexuality, disability, body modification and contemporary fetishism. As a trained counsellor, he has become more recently interested in harnessing the therapeutic potential of photography, as is the case in the recent body of work displayed at this event, ‘Cancer Sucks’.
Margrit Shildrick is Professor of Gender and Knowledge Production at Linköping University, and Adjunct Professor of Critical Disability Studies at York University, Toronto. Her research covers postmodern feminist and cultural theory, bioethics, critical disability studies and body theory. Her books include Dangerous Discourses of Disability, Subjectivity and Sexuality (2009 Palgrave Macmillan), Embodying the Monster (2002 Sage), and Leaky Bodies and Boundaries (1997 Routledge), as well as several recent journal publications on organ transplantation.
Carol Thomas is a Professor of Sociology at Lancaster University, UK, based in the Faculty of Health and Medicine. She is best known for her publications in Disability Studies – including her books Female Forms: experiencing and understanding disability (1997, Open University Press) and Sociologies of Disability and Illness. Contested Ideas in Disability Studies and Medical Sociology (2007, Palgrave Macmillan). She has also researched and published widely on ‘patients’ and ‘carers’ experiences of living with cancer – and has recently completed a project funded by the Economic and Social Research Council (ESRC) on illness narratives in cancer contexts (ESRC project: RES-000-22-2031). Publications on narrative analysis have followed – notably in debate context in Sociology of Health and Illness, 32(4). Carol is currently Director of the Centre for Disability Research (CeDR) at Lancaster University.
The Waterfront Arts Project on Southport Promenade opened on 15th August 2010. The project, founded by art lecturer Tony Wynne, was originally a large ‘pop up’ gallery but soon developed into a dynamic cultural enterprise run by a dedicated team of volunteer artists. As the project enters its third year and as visitor numbers approach 40,000 its ethos remains the same – it is dedicated to the promotion, development and facilitation of fine art practice in Southport and the North West region. In doing so it attempts to offer exhibition opportunities to artists, students and graduates in order to empower and develop their individual visual language. The Project also encourages debate and discussion about fine art practice within a rapidly changing socio-political and economic environment.