Mary Fridley & Gwen Lowenheim presenting for Susan Massad - ‘Creating a New Performance of Dementia’

Season five of our podcast continues with another presentation from our 2020 annual conference: ‘Engaged Phenomenology’ Online. This episode features a presentation written by Mary Fridley & Susan Massad, with Gwen Lowenheim presenting for Susan Massad, all from The East Side Institute, New York City.   ABSTRACT: As viewed through a biomedical lens – which remains the dominant way in which dementia is seen – Alzheimer’s and related dementias (ADRD) is seen primarily as a condition of loss of capabilities within an individual: of speech, of cognitive abilities, of physical capacities and, eventually, of life while research and treatment is directed toward cure of the  individual. Dementia activists across the globe are now raising the question: Is the shame, stigma, and isolation that people with ADRD and their families experience in large part a result of this very narrow lenses through which dementia is understood? In this paper we will present on the Joy of Dementia (You’ve Got to Be Kiddin!) project, a  playful, philosophical and conversational collective exploration of the dementia experience as an effort to introduce a different lens – a development lens – as a counter narrative that challenges the current “tragedy narrative” surrounding ADRD. Seen through a development lens, humans are no longer are viewed, not as discrete and isolated individuals but as relational beings, connected to one another in ways that allows us to grow with, rather than fear, uncertainty.  In this view, a dementia diagnosis presents transformational opportunities not just for the individual diagnosed, but to everyone in the “dementia ensemble” – including people of all ages who fear growing older and losing cognitive abilities. The workshops, always experiential, often involve mixed groupings of family members, care givers, professionals and those diagnosed, introduces improvisational play and philosophical conversation as activities that support the discovery of new ways of relating, being together, listening and responding. Participants are supported to challenge deeply held assumptions about what we and others “know” about the dementia experience, and it is within this collaborative ensemble building activity that the joy that comes with creating a new performances of dementia is discovered.   BIOS:    Mary Fridley is pro-bono Director of Special Projects at the East Side Institute in NYC and an accomplished teacher and workshop leader. She practiced social therapy for 12 years and continues to use the social therapeutic approach as an Institute faculty member. Mary co-leads two popular workshop series, “The Joy of Dementia (You Gotta Be Kidding)” and “Laughing Matters” and was featured in a February 2019 Washington Post article, “Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer.” Mary is also a playwright and theater director and works as a non-profit fundraising consultant.   Susan Massad is a retired clinician and medical educator. A primary care physician she has researched and taught in the arena of doctor-patient communication and the social-cultural-biological dimensions of health and wellness. She is a faculty member at the The East Side Institute where she is the co-creator of the Joy of Dementia© workshops that she coleads all over the US with colleague, Mary Fridley.   Gwen Lowenheim is a learning design specialist and TESOL instructor. She is co-founder/co-director of The Snaps Project, an educational consulting firm. Gwen trains and supervises educators and social entrepreneurs around the world in a social therapeutic, performance-based learning approach that brings creativity and innovation into classrooms and community-based programs. Her programs introduce theatrical improvisation, philosophical exploration, remix and group play as part of developing collaborative teams, language learning and stress management.   This recording is taken from the BSP Annual Conference 2020 Online: 'Engaged Phenomenology'. Organised with the University of Exeter and sponsored by Egenis and the Wellcome Centre for Cultures and Environments of Health. BSP2020AC was held online this year due to global concerns about the Coronavirus pandemic. For the conference our speakers recorded videos, our keynotes presented live over Zoom, and we also recorded some interviews online as well. Podcast episodes from BSP2020AC are soundtracks of those videos where we and the presenters feel the audio works as a standalone: https://www.britishphenomenology.org.uk/bsp-annual-conference-2020/   You can check out our forthcoming events here: https://www.britishphenomenology.org.uk/events/   The British Society for Phenomenology is a not-for-profit organisation set up with the intention of promoting research and awareness in the field of Phenomenology and other cognate arms of philosophical thought. Currently, the society accomplishes these aims through its journal, events, and podcast. Why not find out more, join the society, and subscribe to our journal the JBSP? https://www.britishphenomenology.org.uk/