Sex, Intimacy and Living with Life-Shortening Conditions

Sarah Earle is Professor of Medical Sociology at The Open University, UK. She is a medical sociologist with internationally recognised expertise in the sociology of reproductive and sexual health. Her inclusive research theorises the sexual and reproductive lives of under-researched or marginalised groups, exploring how this lack of agency impacts on everyday life and its meaning. She was a founding member and, later, Chair of The Open University Sexuality Alliance. Maddie Blackburn is a retired lawyer and senior health professional, and a Visiting Fellow at The Open University, UK, where she completed her PhD. Maddie was the founding Chair of The Open University Sexuality Alliance and was previously a Chief Executive at Iain Rennie Hospice at Home and Director of Children’s and Young People’s Strategy at the Healthcare Commission, now the Care Quality Commission.

Part One: Policy and regulation: National and international landscapes. 1.A changing population: Young adults with life-limiting or life-threatening conditions. 2.International policy and governance related to young adults with life-shortening conditions. 3.The regulation of sexual expression and joy: Complexities and contradictions. 4.British law, help or hinderance? Sexuality and disability. 5.A rite of passage? A UK perspective on transition for young people with life-shortening conditions. Part Two: Experiences of sex, intimacy and reproduction. 6.Life-long learning about sex on an uncertain life course. 7.Reasons to shag a cripple. 8.Disruptions, relationships and intimate futures: The unintended consequences of pandemic control. 9.Near-death issues and the impact on the sexuality of people with intellectual disabilities during the pandemic. 10.Navigating normativity: Understanding reproductive loss in the lives of young adults with shortened lives. Part Three: Reflections on researching sexual and reproductive intimacy. 11.Involving people with life-shortening conditions in research: Perspectives on co-production. 12.Research and governance in action: Implementing research on sex, intimacy and reproduction.