We Wouldn't Change Him for the World, but We'd Change the World for Him

Down's syndrome (DS) occupies a curious position in the public imaginary in the United Kingdom. There is a growing public, and positive, presence of people with DS in cultural outlets and across networks of people with experiences of disability. Simultaneously, there is a troubled history of institutionalization and stigmatization of people with DS, the condition is targeted in prenatal screening programs, and parents of children with DS struggle to secure sufficient resources and social support to thrive. Drawing on a qualitative study where I examined such tensions, I show how parents of children with DS craft a positive imaginary of disability that highlights the value, significance, and ordinariness of their, and their children's, lives. Moreover, they actively participate in community-building practices with other parents, in which they collectively attempt to build a habitable world for their disabled children. While recognizing the challenges posed by parenting a disabled child, parents are equally pulled into a project of cultivating affirmative conceptions of disability. In so doing, they fashion and present alternative narratives that revolt against dominant deficit understandings of pity, abjection, and misfortune.