‘I want to have children, but I’ve got a learning disability’ : understanding the reproductive and parenting imaginaries and experiences of people with learning disabilities from their perspectives and that of family members and support workers.

Abstract

Today, social policies recognise that people with learning disabilities have the same rights as anyone else to family life, but many still face challenges to fulfilling these rights in practice. This thesis explores why, by prioritising the perspectives of people with learning disabilities alongside the perspectives of family members and support workers as important actors in their lives. Online and phone interviews were conducted during the Covid-19 pandemic with 21 people with learning disabilities, 10 siblings and three parents of someone with a learning disability, and three support workers. Interviews examined the possibilities for and experiences of people with learning disabilities having children. Key themes included: family roles and care dynamics, lack of accessible sexual and reproductive health education and information, barriers to intimacy, and issues of child removal. I use disability studies, reproductive justice, and stratified reproduction as conceptual frameworks to illustrate how oppressive reproductive controls associated with previous institutionalisation and sterilisation practices still exist today through more subtle ‘newgenic’ ways. I argue that people with learning disabilities can be both supported and constrained when family members try to balance their rights with protectionism. People with learning disabilities continue to be restricted in their reproductive decision making by support workers that monitor and surveil their intimate lives and reproductive opportunities. Even when individual staff are supportive of the reproductive rights of people with learning disabilities, the wider organisational contexts they work within shape whether and how they engage with the topics of sexuality, reproduction, and parenthood. Social contexts of ‘risk’, especially around child removal, are also limiting the reproductive choices of people with learning disabilities as judgements about the capabilities and appropriacy of them having children is questioned. I end the thesis by considering changes in practice and attitudes that could enhance the reproductive rights of people with learning disabilities.