Review by Julie Van Dam, University of Southern California, Email: julie.vandam@usc.edu
Keywords: sex, sexuality, gender expression, physical disabilities, South Africa, social change
It seems appropriate to begin this review with a quick examination of a central rallying cry of the disability rights movement, “Nothing About Us Without Us.” Indeed, it is this motto that the editors of Physical Disability and Sexuality: Stories from South Africa use in their conclusion, precisely because it so well encapsulates the nature and interest of this collaborative study. A clear call for direct participation by people with disabilities in the articulation of disabled rights, the motto is most often credited to American disability theorist James Charlton’s 2000 seminal publication with the same title. And yet, as Charlton tells us in his own introduction, it was from the lips of two different disability rights activists—in 1993 in South Africa—that he first heard it uttered. I bring this up to underscore the always-already global origins of the disability rights movement as well as of the necessary stories from the Global South that should inform our understanding of disabilities, debilities, and health insecurities more generally. For this reason and others, Physical Disability and Sexuality marks a solid contribution to the growing body of literature focused on the intersections of disability and sexuality in Global Southern spaces.
The purpose of the book, as stated by the editors and authors, is to examine the societally-imposed challenges around sex, sexuality, and gender expression faced by people with physical disabilities in South Africa as well as to raise awareness about these challenges in order to effect social change. The 10-chapter book is both edited and authored by a cross-section of international social scientists and South African activists as well as South Africans who volunteered for the editors’ larger umbrella research project, the Disability and Sexuality Project, active from 2015-2017. The editors represent a research team composed primarily of social scientists issuing from South Africa, including Xanthe Hunt whose 2017 PhD dissertation formed the basis of the study and Leslie Swartz whose work on disability in the African context is well-established. Their study set out to query societal attitudes around physical disabilities and sexuality as well as to cull the personal experiences of people with disabilities.
Unlike most academic book projects, however, Physical Disability and Sexuality: Stories from South Africa means to allow scholarly research and analysis to coexist with personal narratives from the research subjects themselves: South Africans with disabilities. Much like Lara Bezzina’s recent intervention into disability in Burkina Faso (2020), this book project too includes participatory action research (PAR) but in the form of Photovoice which puts cameras into the hands of research participants and then invites them to write an accompanying narrative. This is one of the most compelling aspects of the book not only because it gives the participants agency in their own storytelling and the way they see their worlds, but because it provides readers with an extraordinarily rich resource unavailable in most scholarly works.
The book is fairly evenly divided between scholar-authored chapters and research participant-authored ones, with the former engaging directly with the latter when useful. Nevertheless, readers would benefit from more frequent and more developed reflections by the researchers on the narratives by research participants. One of the more interesting reflections on femininity, disability, sexuality, and gender, for example, was drawn upon “Rosabelle’s Story” by professional paralympian Rosabelle Riese. In his comments, Swartz rightly pointed out that Riese’s sense of sexuality is deeply intertwined with sport and her sporting career, thereby suggesting novel ways in which to understand and experience sex and sexuality–in relation not only to people with disabilities but to all humans across the spectrum of abilities, “healths” and bodies (84). The most compelling of the academic chapters is Chapter 6, “Physical Disability and Masculinity: Hegemony and Exclusion,” authored by Swartz, Bongani Mapumulo, and Poul Rohleder from the University of Essex. Commenting on Mapumulo’s personal narrative “Bongani’s Story,” this chapter is the only one to extend the intersectional experiences of men (or women) with disabilities beyond sexuality and gender norms to ethnicity (in this case Zulu) and economic status. Bongani’s narrative, inflected by pressures to “perform” economically and sexually as a man, a provider, and a Zulu man, ultimately shows “men with physical disabilities resisting being placed in a hierarchy of commodification” (99). These moments in particular push forward compelling new arguments around disability and sexuality evocative of those found in the seminal essay collection Sex and Disability, co-edited by Robert McRuer and Anna Mollow (2012). The main stereotype that the book wishes to explore and debunk is that of the asexuality of people with disabilities, but the aforementioned observations make it clear that there is much more at play than simply that.
But while the research team did solidly engage with the intersection of gender norms and disability in South Africa and beyond, there was a palpable lack of attending to the histories and daily realities of South Africans, especially in regards to race, the concomitant histories of colonization and apartheid, and class disparities. Furthermore, all of the research participants identified as cisgender and heterosexual. The researchers were clear about the limitations of their study, and concluded with a commitment to further research in this area. If they do, the next phase of the project could give readers what they might be looking for but cannot find in this book: a true sense of how this is a specifically South African and postcolonial intervention into disability studies and disability rights advocacy.
To conclude, one of the team’s stated objectives, and one that is clearly realized in the work, is accessibility. Case in point, the “Introduction” is actually a glossary of terms, the place where most if not all academic works would end, not begin. The writing style in the remainder of the book mirrors this approach, guiding readers through more complex theories and approaches. This reader felt as though the book were geared much less towards scholars in the field of Disability Studies and more towards the lay reader, adolescents or newcomers to the topic of disability (and even sexuality). This could be off-putting at times, especially with the direct addresses to the reader such as “You may still be confused” (7), when explaining the social model of disability, or the arguably problematic “Let’s return to the original question posed in this chapter: ‘How does a man or woman who is paralyzed and uses a wheelchair have sex?’” (47) when presenting the flexibility of the notions of sex and sexuality. And yet, the scope of the research and breadth of texts (written and otherwise) represent an unusually-accessible collection of materials for readers and viewers alike. The book is just one part of the project, which has a complementary website with even more photos and photovoice narratives, a 16-minute documentary video and videos of the full interviews with research subjects (all with or without captions), links to additional publications such as an annotated bibliography on disability and sexuality and a number of open access articles published in the leadup to the book’s publication, itself open access through Palgrave Macmillan. All in all, this book and its accompanying materials would serve as an excellent introduction for newcomers to disability studies and/or to the topic of diverse expressions of sexuality.
Works cited
Bezzina, Lara. Disability and Development in Burkina Faso: Critical Perspectives. Palgrave
Macmillan, 2020. doi.org/10.1007/978-3-030-24678-5
Braathen Hellum, Stine, Mark T. Carew, Mussa Chiwaula, Xanthe Hunt, Poul Rohleder and
Lesie Swartz, eds. Physical Disability and Sexuality: Stories from South Africa. Cham,
Switzerland: Palgrave Macmillan, 2021. https://doi.org/10.1007/978-3-030-55567-2
McRuer, Robert and Anna Mollow, eds. Sex and Disability. Durham and London: Duke UP,
2012. doi:10.1515/9780822394877
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.