“It’s No Longer Taboo, is It?” Stories of Intimate Citizenship of People with Disabilities in Today’s Russian Public Sphere

Abstract

This article examines how disability and sexuality are represented in today's Russian media, and how disabled people navigate these understandings. Drawing on online storytelling and first person stories about sexuality told by disabled people in the public sphere, the article provides a qualitative account of people with disabilities, journalists and civil rights advocates, analyzing how contemporary Russians with disabilities narrate their own lives in public forums. The focus of their stories, as well as the accounts of eyewitnesses, volunteers in the institutions, is on the constraints and limits of sexuality and intimacy spheres imposed by the professionals, families and wider society. This article also interprets the narratives behind disabled people's sexuality circulating in contemporary Russia through digital networks, in combination with qualitative data from primary sources: disability activists and two journalists with and without disability in Moscow. It is argued that the telling of these stories in a public forum is a political act. In personal stories about sexual, bodily experiences told in the interviews or autobiographical texts, self-presentations and discussions in social networks, the voices of people are heard, permitting emancipation from previous categories. However, disability always remains with them, playing an important role in social lives of these people and in their sexual experiences and identities, becoming the cornerstone of the personal and collective redefining of themselves. Using ideas of "visibility politics" (Arendt), queer/crip kinship and intimate citizenship (Plummer), the authors demonstrate how someone might choose to speak publicly about a topic and how this understanding develops cultural understandings of contemporary Russia.

Privacy and Digital Data of Children with Disabilities: Scenes from Social Media Sharenting

“…The visibilities, roles, and meanings of disability in the public sphere have been historically complex and often closely associated with the oppressions of disablism and ableism (Hadley, 2014;Iarskaia-Smirnova, 2020;Schweik, 2009). In turn, disability in the private sphere has been subject to other kinds of issues and modes of regulation (Priestley & Shah, 2011).…”