The question of identity positioning in relation to engagement with issues of social exclusion is complex. I am a white non-disabled South African man working on disability and care issues. I reflect on my representation of my parents, through memoirs and of Elsa Joubert, a doyenne of African writing. My depiction of these people as profoundly affected by disability and illness provides me as a privileged white scholar a way of marking my difference from stereotypical oppressive positioning. Though my rhetorical manoeuvres do not undercut the intention of my work, they point to broader, difficult questions about positioning and identity politics. I use my links to and concern with disability and illness to signal my appreciation of difference and exclusion, but questions of power and positioning remain.
- Medical humanities
- narrative medicine
- palliative care
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Like a number of other journals, BMJ Medical Humanities is dedicated to issues of transformation of the academy. As the journal website (BMJ Journals 2022, para.1) puts it:
We’ve spent the last four years working toward social justice, accessibility, global outreach, and inclusivity. We’ve welcomed research and writing from the LGBTQ and disability community, and included podcasts with activists and others dedicated to equity and justice.
The journal correctly notes the ongoing struggle for scholars based in the Global South to be represented in journals emanating from the Global North, and, indeed, it remains the case that the entire editorial team is based in the Global North, again, in common with many other international publications.
The issues raised by the journal play themselves out within Global South contexts as well, including in South Africa (Costandius et al. 2018). In this article I reflect on my own positioning as a white South African responding to questions of access, exclusion and race. I shall show that issues of difference are more complex and layered than the usual categories may suggest.
In this article I use the techniques of personal essay, reflection and autoethnography to raise issues about change in the academy. I begin with a vignette which exemplifies many of the complexities of positioning—my own and that of others.
Claiming disability for social change in South Africa
In the heyday of the early period of democracy in South Africa, colleagues and I were fortunate enough to have our book Disability and Social Change: A South African Agenda (Watermeyer et al. 2006) launched in the Old Women’s Jail at the Constitution Hill precinct in the centre of Johannesburg.
The venue was significant for a number of reasons. The Constitutional Court and surrounds, completed in 2003 and recognised for architectural innovation (Law-Viljoen and Buckland 2006) are monuments to the democracy that was born in 1994 and to the globally admired South African constitution promulgated in 1996, but built on the site of colonial and apartheid buildings. Johannesburg tourism text described the precinct as follows:
The buildings of Constitution Hill in Braamfontein reveal the horrors of some of the darkest hours of 20th Century South Africa, while also showcasing the bright, optimistic future of the country enshrined in the modern Constitutional Court. (In Your Pocket 2022, para. 1)
The South African constitution was (and is) rare among constitutions globally in that in its Bill of Rights, unfair discrimination on the basis of disability is explicitly outlawed (Chapter 2, Clause 9 (3) (Republic of South Africa 2022)). For our team, the act of launching our book, the first attempting a general overview of disability issues in the country, at the Constitution Hill precinct, represented our aspirations. We wanted disability issues to be seen to be central to the work of democracy. This was partly because of our understanding that the extractive and violent practices of both colonialism and apartheid were inherently disabling (Van Onselen 2021; Imada 2017; Livingston 2005), and partly because of the clear evidence of a strong relationship between poverty, income inequality and disability (Watermeyer et al. 2006).
The book as initially conceived had been my idea, but had developed and changed considerably through discussions with coauthors and editors. I had been seconded from my university position to work for 3 years at the Human Sciences Research Council (HSRC), the national social sciences research agency, which had a central budget from government, but also relied on outside funding. Established under apartheid, the HSRC had done some good social science work, but also, deservedly, had the reputation for providing some of the ideological justification for apartheid through research supportive of oppressive policies (Cloete, Muller, and Orkin 1986; White 1992). As Maaba (2021), 399) put it:
The HSRC benefited greatly and flourished during apartheid, staffed with Afrikaner experts who collaborated unquestioningly with the oppressive state, serving its research and intellectual agenda.
Like the Constitution Hill precinct, the HSRC had recently been re-imagined as a symbol of the new, democratic South Africa, supportive of democracy but independent enough to criticise the democratic regime of the day, in keeping with liberal democratic values. The first Chief Executive Officer of the relaunched HSRC was Dr Mark Orkin, one of the harshest and most eloquent critics of the ‘old’ HSRC and its apartheid links (Cloete, Muller, and Orkin 1986). I was excited to join the ‘new’ HSRC because of what it meant in a changing South Africa, and I was delighted that I was permitted to start a disability studies thrust within an existing HSRC unit—I had succeeded in convincing people within the organisation (not that they were not receptive) that focusing on disability rights and inclusion was important within the national social science body. More personally, I was gratified as a white, non-disabled, South African, to be given a chance to contribute to an inclusive social science, working with a diverse team of colleagues. Like most of my friends, I had opposed apartheid and been part of efforts to change social services in support of the majority in South Africa, and in their struggle for rights (Swartz and Levett 1990), but the question of how, if at all, white people in South Africa could contribute to meaningful social change, was alive then as it is now (Coleman, Collins, and Bonam 2021; Pillay and Ebert 2022). Importantly, scholars with a Black Consciousness tradition raised doubts about the potential reproduction of racism in relationships between white and black South African activists (Biko 1978; Hook 2011; Cooper and Ratele 2018). These questions are, of course, akin to debates within disability studies concerning the potential for collaboration between disabled and non-disabled scholars to reproduce ableist oppression (Tregaskis and Goodley 2005; Stone and Priestley 1996). For me, then, the opportunity to be launching a book on disability access and rights on Constitution Hill was not something to be taken for granted. In fact, it felt like something of a gift which I, with my white non-disabled privilege, was not sure I fully deserved. As Inckle (2015, 44) notes:
White men are…defined as masters of their own bodies, not at the mercy of their physicality in the ways that women, disabled and racialised people are seen to be. Transcending the body is the location of privilege, while ‘inescapable corporeality’… —which is to be permanently defined by and as a body—is the mark of the Other and is elemental to structures of ‘race’, disability (and gender).
In those heady days of the early democratic era in South Africa, with the transition to democracy commonly described as a ‘miracle’ (Graybill 2002; Sparks 2003), the ideology of the ‘rainbow people of God’, as espoused most famously by Archbishop Desmond Tutu, chair of the Truth and Reconciliation Commission (Tutu 2006), could be read (and experienced) as a way white people committed to democracy could escape the embodied determinism described by Inckle (2015) above. In the context of the South African ‘miracle’ and the commitment to an ideology of non-racialism of the ruling African National Congress, I hoped that somehow I could be protected from the historical and ongoing baggage of my white, male, non-disabled privileged status. Indeed, my experience was (and continues to be, by and large) that of being treated generously by others, and of being allowed to make a contribution to what I believe to be important to the positive transformation of the country in which I live.
It would, of course, be not only self-serving but also politically naïve to imagine that the problem of embodied histories could be solved through South Africa’s inclusive transition miracle. Posel (2015, 2169), a white South African social theorist, notes,
(T)he meaning of non-racialism as it was used in South Africa’s transition to democracy, was never post-racial. It was not a Utopian project looking to a future in which race would be erased. It was, rather, a fundamentally more pragmatic, if also principled, engagement with the realities of the present – a critical tool, in fact, in stabilizing a precarious transition and performing the conditions of an emergent and fragile national collective.
But though I was aware of this reality as we launched our book at Constitution Hill, there was a part of me that wished that South Africa were indeed a country of ‘miracles’, with one miracle being the effacement of my embodied identity. And it felt possible, as I was part of a diverse group in terms of race, gender, sexual orientation and disability status, and together we had created something we believed to be of national ideological import. There was an atmosphere of celebration that night, celebration which went beyond the usual happiness of a book launch. Part of what made the celebration more enjoyable was the vocal participation in discussions by representatives of Disabled People’s Organisations, most of them South Africans of colour who also identified as disabled—the very people who arguably were historically among the most silenced and excluded in our country. But they were talking now.
Into this discussion came the voice of a distant relative of mine whom I had invited along to the launch. He was a man of young middle age, white, physically very fit, and a keen cyclist. In my reckoning, this man had little consciousness of his own privilege; I experienced him (as I experienced other relatives) as unintentionally but, to me, obviously racist. He had recently had an accident on his bicycle and was using crutches to get about. During a lull in the very lively and diverse conversation, he loudly began, ‘As a disabled person, I…’. I cannot remember what he said next, but I remember very clearly my visceral reaction to my relative’s intervention. Technically, of course, he did at the time of speaking have a physical impairment, but one which, we knew, would be temporary. With consummate (but to me, horrifying) skill, though, he knew how to use his temporary impairment to speak not as the privileged white non-disabled man which I believed him to be, but as part of a community of oppressed and excluded people which, I am fairly confident, he had not known or thought about before that evening. Discursively, he was cripping himself for what I saw to be reputational gain in that context. I was furious. But perhaps too much so.
Cripping my parents
I am a first language English speaker, and have always been lucky enough to write quickly and easily. This facility, along with my whiteness, gained me entry into an academic career in highly rated South African institutions. Like many of my contemporaries, while I was a graduate student and new academic, I worked after hours as a tutor for South African Council for Higher Education, an organisation prominent among those established to provide access to higher education and adult learning for black South Africans denied the kind of access I enjoyed as a white person (Aitchison 2003; Kaiper 2018; Trimbur 2009). This teaching, which I very much enjoyed, put me in direct contact with the experiences of many South Africans who were not first-language English-speakers, who were studying at night often in accommodation which was cramped (sometimes without electricity), and who were hungry—a reality still for many South African students (Walker 2020; Firfirey and Carolissen 2010; Ruswa and Gore 2021; Van den Berg and Raubenheimer 2015). Part of my reaction to the realities with which I was being faced was to work more closely with authors who were less experienced than I was, and did not have the benefit that I had having studied English at university level. It was also important to me to share with others lessons I had learnt as a young scholar starting to submit articles to academic journals. I began to work less and less as a single author and more and more as a coauthor with less experienced authors, or as an editor of the work of others. I also began to run writing workshops and trainings for other academics.
This movement from sole author to coauthor, editor and facilitator coincided with my entry into work in the field of disability studies. I worked with others to create Disability and Social Change (Watermeyer et al. 2006) (mentioned above) and there were other texts in which, similarly, I deliberately took less of a central role. I enjoyed this collaborative work immensely but I also felt increasingly that I was losing my own distinctive voice through writing and editing in this way. I longed to find my own writing style again. Within disability studies (and particularly in feminist disability studies) there was a strong tradition of valuing personal narratives, viewing these as central to how we learn about other people and ourselves (Garland-Thomson 2005; McKinney 2018; Savarese and Savarese 2010). I wanted to try this kind of writing, and a good way to do it was through writing a book detailing, in part, my experiences as the son of a man with a disability. I published this book, Able-Bodied, in 2010 (Swartz 2010). It is hard for me to know what my primary motivation was to write this book. I did use the writing process as a form of psychotherapy for myself—what Rabe (2019) refers to as ‘writing therapy’ (Bolton 2013; Rabe 2019). The book gave me a way of engaging with issues of loss and regret in my memory of my father, who died suddenly and unexpectedly when I was a young man. But the book also afforded me what I experienced as a powerful way of talking back to assumptions about me as a privileged, white, non-disabled man. I had my own story to tell, and part of that story was the story of disability and exclusion as experienced by my father.
I completed Able-Bodied (Swartz 2010) while my mother was dying, and I was very pleased that my mother, contrary to prognostications from doctors, lived long enough to see the book published and to enjoy its reception. Caring for my mother as she was dying was one of the most difficult processes I have been through in my life, and I knew from my experience with Able-Bodied that a good way for me to deal with this would be to write about my mother’s illness and death. I published How I Lost My Mother ( Swartz 2021a ), a memoir, as it turned out, about much more than my mother’s dying, 10 years after she died. Through my work on disability but also, crucially, through the experience of our family’s caring for my mother, I became increasingly interested in the field of ethics of care, and in the question of exploitation of care workers, an issue I dealt with in the book and in academic articles (Swartz 2012, 2015), but, as with Able-Bodied, a core motivation for writing the book was deeply personal rather than political.
Despite having multiple impairments and living with significant pain throughout his life, my father, I have no doubt, would have rejected the idea that he was a person with a disability—like many other people, he would have found the ‘disabled’ label demeaning and emasculating. My mother was proud of and pleased with Able-Bodied; when she explained to her friends, however, as she put it, ‘The book is about my late husband, who was handicapped’, I would cringe inwardly. The term ‘handicapped’ is in general out of favour with the disability community (Andrews et al. 2019), and is certainly much abhorred by disability activists in South Africa (see, eg, Disabled People South Africa [DPSA] 2001), the very constituency with which I wanted to gain acceptance.
At a personal level, then, despite my belief that the book Able-Bodied honoured my father and what he meant to me and others, there was also through my writing about him a double betrayal: I labelled him as disabled when he would not have wanted that, and, internally at least, I dishonoured my mother’s choice of language for describing her late, much-loved husband. The issue of life-writing as a form of betrayal or revenge has been well covered in the literature (Sherborne 2019); the title of Sherborne’s study of this is apt: ‘Tested on humans’. So my own acts of betrayal through writing were not unique; but they played a particular role in the politics of my positioning in relation to disability activism in South Africa.
There is a similar issue at stake in How I Lost My Mother. My mother did not identify as a person with a disability, and though she did go through a long period as a young woman when she suffered from what today would technically be termed panic disorder, she was never diagnosed. Much of my focus in my book was on the last year of her life, when she had cancer. As an author I did, of course, have the right to write about and focus on what concerned me, and caring for my mother in that last year was indeed a defining experience of my life—something I routinely describe as both the most difficult time of my life and one of the times I am most grateful for. I do not think there is a problem with this. But, as an author who had previously in some ways ‘outed’ my father as disabled when his wish would probably have been to ‘pass’ as not disabled (Kuppers 2006; Waterfield, Beagan, and Weinberg 2018), I was doing something similar to my mother. I was representing her whole life through the lens of her illness and death—a small part of her life. I do not think this was a problematic decision and I believe my mother would have enjoyed reading the book, but the book was also part of my own identity performance. In this case, I was presenting myself to the world as a man very focused on a field commonly (and problematically) considered ‘female’—that of care of people with illnesses and disabilities. I used my mother’s illness and the reality of its impact on me to perform an identity which I marked as different from that of the stereotypical. I was using my mother’s illness, and my care for her, to indicate that I could not be discursively captured by what has been termed ‘hegemonic masculinity’ (Connell 1987), and hegemonic masculinity has been discursively associated with white male power in South Africa (Morrell et al. 2013). These issues came further into focus as I engaged with the late work of Elsa Joubert, the South African writer.
Cripping an icon
Elsa Joubert (1922–2020) was a famous South African writer, with work appearing on top lists of African writing (Swartz 2021b). Her novel Die Swerfjare van Poppie Nongena (Joubert 1978), much translated, garnered considerable acclaim but also concern, partly because of what some viewed as Joubert’s lack of adequate engagement with issues of power between her and the South African woman of colour whose story formed the basis of the novel (McClintock 1990; Schalkwyk 1986), a debate which continues (Swartz 2021b). Joubert’s last book, a memoir published in Afrikaans when she was 95, and later translated into English (Joubert 2017, 2019), focused on her life as a very old person. The book garnered substantial critical acclaim. In my recent publication on the book (Swartz 2021b), I make what I believe to be a useful intervention in the discussions about the memoir, which is aptly entitled Cul de sac. For the purposes of my discussion here I will not go into the detail of my response to Cul de sac, but I will note two related points that I make. The first is that the memoir expresses very clearly and, in my reading, angrily, the realities of the segregation and incarceration of old people with infirmities, even old people who, like Joubert, are privileged and have supportive families. Joubert shows from her own experience that being very old is not just a question of bodily impairment and decline (not that this is unimportant), but also an experience of being removed from the mainstream of the world, because of the social arrangements often made to accommodate very old people. The second point that I make is that in the memoir Joubert is highlighting power issues around ageing and infirmity. I regard Cul de sac as a deeply, and importantly, political book, raising questions about issues affecting people with non-normative bodies. In this sense, I suggest, a disability politics reading of Cul de sac is helpful, and I believe the book makes an important contribution to the politics of disability life-writing which Garland-Thomson (2005) views as central to disability studies and feminist disability studies in particular.
In making this claim, which I believe to be fair and accurate, though, I also note that the politics of Cul de sac—a disability politics, essentially, may not be obvious to all readers of the book. Indeed, as I show in my article, there are critics who in my view simply ignore this politics. I use this observation to make the point that in South African literary and cultural criticism, for obvious historical reasons, when critics write about the politics of writing they tend to focus on issues of race first and foremost, and second on issues of gender and sexuality (Brown 2014; Mukhuba, Ntatamala, and Ngobese 2019; Prabhakar and Mohan 2019; Samuelson 2021). I suggest that Joubert’s book, though not focused obviously on racial and gender issues as conventionally understood, is nevertheless important politically precisely because it focuses on a hidden but ubiquitous politics—the politics of disablement. By making this argument, I am suggesting that whatever the problematic racial politics surrounding Poppie Nongena may be, Joubert is showing the way in Cul de sac towards a more inclusive understanding of what constitutes a political question in South Africa.
Conclusion: getting out of white privilege free?
A theme running through my memoirs about my father and my mother (Swartz 2010, 2021a), and in my reading of Joubert (Swartz 2021b), is that of the politics of care. As care ethicists note, care, globally, is deeply raced and gendered (Fisher and Tronto 1990; Tronto 2010; Glenn 2010; Dirth and Adams 2019), so I do deal with both race and gender in these writings. But in honouring my parents and Joubert, I am implicitly asking my readers to view the lives of my parents and that of Joubert not just as the lives of privileged white South Africans, but as lives profoundly shaped by disability and illness. I believe this lens into their lives reveals important things about them that would not otherwise be revealed, but my use of the lens reveals something, as well, about me.
All writing, even about others, is a form of self-presentation. My choice in describing these elders in the way I do is a way I can signal something to others about my own positioning. I do not deny my whiteness or my privilege, including the privilege associated with not being disabled (Nusbaum and Sitter 2016), but by writing as I do about disability and illness, and by insisting that my readers are aware of the politics around disability and illness, I am performing my own dance of identity. I am asking my readers to understand that there is more to me than just my whiteness and my privilege. This of course is true of every person—nobody is defined only by race, gender, disability status, age and so on. In the politics of South Africa and beyond, however, I am using my links to and concern with disability and illness to signal my appreciation of difference and exclusion. I do not do this cynically or for instrumental reasons alone, but have chosen my tongue-in-cheek title for this article precisely to illustrate that these complex motivations are important, and not just for me. It is also important to acknowledge that though I am asking for a broadening of ideas about difference and exclusion, even here I am being selective—I am not engaging fully, as I could be, and possibly should be as an older academic, with the politics of ageing and ageism. It is also important that I own that this article in itself is a form of self-presentation and identity performance.
Part of what people with privilege (and many, if not most, academics are privileged in some ways) may do to live with that privilege is not only to use what some have termed virtue signalling (Levy 2021), but also to position themselves as having particular access to and understanding of forms of exclusion. This rhetorical self-positioning may be especially effective where, as in my case, the exclusion is one which is commonly overlooked. Exploring how and why people use this kind of manoeuvring in politically complex environments may be helpful if we wish to fully understand the many layers of meaning in any moral economy.
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No data are available.
Patient consent for publication
Contributors LS is the sole author.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.