We would like to talk about the research I did while I was studying for an MSc in profound and complex learning disability. I asked five everyday people about their experience of spending time with Johanna. Some of the people I talked to have known us 21 years. I asked them their opinions about talking to and being friends with a person who communicates without words. I was interested to know if they wanted more help to do this. I asked them specifically about what they thought helped and stopped Johanna from being part of everyday life.
We will use pictures to illustrate our talk by PowerPoint presentation. We hope you will be able to share some of your experiences of being with people with profound disability in this workshop. Asking people who know the person well is one way of recording their life stories. We are glad that we are working with Noelle McCormack and interested to learn more about her work.
I'm working with Catherine and Johanna de Haas in a workshop about how people with PMLD are living good lives and participating in telling their stories. The approach I've adopted in my research owes much to the 'social model of disability' (Oliver, 1990). The barriers to doing participatory life story work with people with PMLD are many and varied. At our workshop I'm going to focus on one of the barriers I've identified; that we're not sure how to do life story work with people with PMLD and we're worried about getting it wrong.
The development of a 'tool kit' of methods is one of my aims, which addresses this particular barrier. My tool kit is made up of objects that are meaningful for me and reflect what I have learned from my experience to date, both from a reading of the academic literature and my experience in the field. We will handle the objects from the toolkit and share our experiences in a playful and exploratory way to bring fresh understanding and perspective to our work.
Catherine de Haas - Johanna and I are a mother and daughter team, supported by PAs. Johanna has profound and complex learning disabilities. She communicates without words. Johanna is in her late 20s and I am considerably older. I was a speech therapist for 10 years before she was born and continued to work for the first 13 years of her life. I have recently graduated from the University of Manchester with an MSc in profound and complex learning disabilities.
Noelle McCormack - Noelle is a research student at The Rix Centre at the University of East London. She has worked as a life story facilitator for more than 20 years. Noelle's research is about how people with profound and multiple learning disabilities can participate in life story work.
If you woud like to get in touch with the Social History of Learning Disability (SHLD) Research Group, please contact:
Chair of the Social History of Learning Disability (SHLD) Research Group
School of Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies
The Open University
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