Tom Shakespeare “This Long Disease, My Life”
Posted by Farmer of Thoughts
I am a social scientist and bioethicist, an academic who writes and talks and researches mainly about disability, but also about ethical issues around prenatal genetic testing and end of life assisted suicide. I’ve talked to academic and professional and lay audiences around the world, and I broadcast regularly on BBC Radio 4 ( listen to the broadcasts here). I am proud to have been elected a Fellow of the British Academy.
I’ve also performed as a stand-up comedian and compere in the disability arts world; I’ve done a one-man show at Newcastle’s Live Theatre and other venues; I’ve made Live Art; I’ve taken part in contemporary dance performances with Fathom in Newcastle as well as Butoh dance with Group du Vent in Geneva; I’ve made some artworks and written about contemporary visual art. And I served on Arts Council of England and chaired Arts Council England, North East.
I was born in Aylesbury, Buckinghamshire in 1966: my father was a doctor, my mother had been a nurse. She was born in Sri Lanka, of Burgher origins. I have a younger brother, and an older half-brother. I attended boarding school between the ages of 9 and 17. I then went to Pembroke College, Cambridge and first studied Anglo-Saxon, Norse and Celtic, before switching to Social and Political Sciences. I worked as a printer, and then as a theatre administrator, before coming back to do a Masters and then a Doctorate in sociology at Kings College, Cambridge. My PhD was about ways of conceptualizing disability, and I began to do a lot of undergraduate teaching.
By age 22, I also had two children, and when my daughter’s mother went to Sunderland University, I also moved to the North East to continue co-parenting. I taught briefly at Newcastle University, before getting a lectureship at Sunderland University. In 1996, I moved to Leeds University as a research fellow. The publications were flowing regularly by now: on disability politics and culture, on the ethics of genetics. We conducted a research project with disabled children. Then in 1999, I got a post at Newcastle University, as research development officer for the Policy, Ethics and Life Sciences Research Institute.
Although I got a lot of flack for the disability movement because I was based at the Centre for Life and working alongside geneticists, it was a great opportunity. I worked with the late Duncan Dallas to develop the café scientifique movement: our Newcastle café began in 2000, and still meets as Café Culture Newcastle. More widely, there is a network of café scientifiques in UK, US and across the world. I also developed sci-art initiatives, working with Ashley McCormick, L, Jordan Baseman, Predrag Pajdic and partnering with the Hatton Gallery and Northern Print Studio. Meanwhile, the academic work at PEALS continues.
After research projects on restricted growth, citizens’ juries and how people make ethical decisions, it was time to move on from PEALS. I took up a creative fellowship with NESTA, and at the same time chaired the regional arts council.
Then in 2008, I moved to the post of technical officer in the Disability and Rehabilitation team at the World Health Organization in Geneva, where I stayed for five years. I helped produce the World Report on Disability (2011) and International Perspectives on Spinal Cord Injury (2014) and the UN statement on Forced, Coerced and Otherwise Involuntary Sterilization (2015). I spoke at the United Nations, and went around the world helping launch the World Report on Disability and promote disability inclusion in health (taking me for example to Australia, Canada, Denmark, Egypt, Iceland, India, Ireland, Kosovo, New Zealand, Norway, Slovakia, Thailand, The Philippines, Turkey, USA).
In the meantime I had become spinal cord injured, in 2008, and spent 10 weeks in rehabilitation hospital in England. Over time, and with a lot of outpatient physiotherapy, I regained function sufficient to walk, with leg splints and canes, although I mainly use a manual wheelchair to get about.
In 2013, my funding ended at WHO, and I decided it was time I returned to UK, and resumed a conventional academic career. I chose the post at Norwich Medical School, University of East Anglia, for three reasons: my family have long associations with Norfolk and my grandfather was MP for Norwich 1929-1945; my father having been a doctor, I felt it was a progressive thing to train the next generation of doctors; and Norfolk is one of the flatter parts of the UK and easier for a wheelchair user.
Since 2018, I have worked at the London School of Hygiene and Tropical Medicine, where I co-direct the International Centre for Evidence on Disability. I work on disability and development research projects (e.g. Penda and SUCCEED) in countries including Bangladesh, India, Kenya, Malawi, Nigeria, Sierra Leone, Uganda, Zambia, and Zimbabwe. I am a member of the Board of Trustees of Light for the World UK, and Light for the World International
I have written or edited more than ten books, most recently Disability: the basics, a short book for lay readers about the social, historical and cultural aspects of disability. Over the years, I also authored three TV documentaries: Ivy’s Genes, Who Stole My Parking Space, and The Unusual Suspects. In 2016, I appeared on ITV’s Five Hundred Questions, and won the top prize. As well as my Radio 4 A Point of View talks, I have also occasionally presented Radio 4 Front Row, and contributed to BBC Question Time, Radio 4 Today, BBC Newsnight, CNN, Al Jazeera and other news and current affairs programs.
My daughter is a social worker and my son is a civil servant. I have one granddaughter, born in March 2020. I live in London, a stone’s throw away from the Oval Cricket Ground. My partner is a paediatric oncologist. Lockdown permitting, we love attending theatre, opera ballet, dance, and visual arts.
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