Something about us with us: a reflection of disability studies within psychology in South Africa

Abstract

Despite the fact that disability makes up the largest minority in the world, training in psychology in South Africa today does not give viable mention to the challenges associated to living with disability. Indeed, disability studies and psychology have had an awkward relationship for various reasons, resulting in lack of engagement with disability rights issues in the field of South African psychology. The article discusses what we see as the hiddenness of disability in and from South African psychology, despite disability’s argued centrality to South Africa’s history and present. After presenting key issues in the history of disability rights both globally and locally, the article moves to discuss the tendency of silencing disabled academics and of disability studies within psychology in the country. The stories of two disabled psychologists and academics are shared to illustrate how society is controlled along biopolitical lines, namely that of compulsory able-bodiedness, resulting in the continued silencing of disabled psychology academics; and the continued binary of ‘us vs them’, the able-bodied versus disabled, remains. Arguably, focusing on disability oppression and exclusion provides a way into understanding other forms of exclusion and oppression, including racial and gender oppression. We need to continue to integrate psychology and disability studies by celebrating disabled psychologists and encouraging psychological reflections on disabled experiences. Psychology cannot continue to allow disabled people to be silenced.

Anyone familiar with disability studies will be aware of its awkward relationship with the question of psychology

Watermeyer, 2013, p. 1

According to the World Health Organization (2024), approximately 16% of the world’s population currently experience significant disability, and numbers are increasing with the spread of noncommunicable diseases and a global ageing population. Rates of disability, when corrected for age, tend to be higher in low- and middle-income countries (LMICs) because of higher rates of risk factors largely associated with poverty (Swartz & MacLachlan, 2009). According to the 2022 national census figures, the disability prevalence rate in South Africa was 6%, likely to be an underestimate for a range of reasons, but even at this rate, it translates to approximately 3,721,650 people. According to a recent study, there are approximately 197,327 transgender people in South Africa (Beyond Zero, 2021), and another study estimated that approximately 1.2% of South Africans identify as gay or bisexual (Sutherland et al., 2016). These figures are also likely to be under-estimates, but it is clear that there are more disabled people in South Africa than those who identify as gay or transgender.

It would in all likelihood be unthinkable that a training in psychology in South Africa today would exclude any mention of challenges faced by gay and transgender people in our country, and that is as it should be. But the same cannot be said for disability, despite the fact that disabled people make up the largest minority in the world. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) calls for the ‘full participation and equalization of opportunities for, by and with persons with disabilities’ (United Nations, 2004), and this is in line with South Africa’s constitution. Given the importance of self-representation and participation ( ‘nothing about us without us’ began as a mantra of disability activists), why are disability rights issues not more central in the training of psychologists in our country? Why are there so few psychologists who identify openly as disabled? We are aware as we write this that we do not have good data on the numbers, for example, of disabled psychologists, so some of what we believe to be true may be impressionistic, but the lack of data in itself is probably symptomatic of a broader lack of engagement with disability rights in psychology. In this article, we embark on a discussion of what we see as the hiddenness of disability in and from South African psychology, despite its centrality, as we shall show, to our country’s history and present.

First, something about us, the two authors, since Harvey (2024) calls for research on the topic of ‘transforming . . . the discipline of psychology – globally and locally – may be well served by those “others” in the profession who are willing to remember the truth’. Clare is a physically disabled individual with dwarfism. Her difference is visibly noticeable. She is also an academic in a psychology department at a South African University and a practicing clinical psychologist. She has written about her experience of feeling othered because of her disability in the academe (Harvey, 2024; Harvey & Kotze, 2022) and some of these experiences are shared later for the purposes of this article. Leslie is a clinical psychologist and researcher who does not identify as disabled, but who was raised as the child of a disabled parent (Swartz, 2010). This has led to a complex and deeply personal engagement with disability issues. Growing up, he was acutely aware of how disability is viewed and avoided, with implications for people with disabilities and their families (Swartz, 2010). In reflecting on his own professional and personal relationship to disability, he has tried to take due account of both the value of personal experience for disability scholarship and activism and of the ways in which closeness to and personal investment in disability issues may lead to complicated and, on occasion, compromised, engagement with these issues (Swartz, 2021, 2023a, 2023b). He has worked for many years on disability rights and access in South Africa and further afield. As he ages, in common with many others, he is now developing an impairment – in his case, a hearing impairment.

Key issues in the history of disability rights

Swartz and MacLachlan (2009) note that despite numerous developments in disability representation through several disability organisations being set up both locally and globally, ‘people with disabilities are among those groups who have been largely excluded from the benefits of “development”.’ (p. 4). This is particularly true in LMICs, including South Africa. This relative absence from the development agenda is a primary challenge for people with disabilities globally, locally, and more specifically in psychology in South Africa. As a recently published volume (Ned et al., 2024) shows, exclusion from health care and mental health care remain key challenges for disabled people globally, including in South Africa.

In the context of social exclusion, disability activism for inclusion has been strong, and disabled people with African and South African origins and connections have been active in the creation of international instruments like the UNCRPD (Chalklen et al., 2006; Swartz & MacLachlan, 2009). South Africa is a signatory to the UNCRPD, and in all spheres of public life, a service provision has bound itself to effecting disability inclusion in all areas. As far as we are aware, however, many people in South African psychology have little or no knowledge of the UNCRPD or of the role that disability activists and activism played in contributing to the birth of our democracy (Chalklen et al., 2006).

This is despite the fact that colonialism and apartheid and ongoing injustices have been, and continue to be, disabling in at least two ways (Chataika & Goodley, 2024; Swartz, 2022). First, extractive labour practices, violence, exposure to toxins and other environmental hazards, compromised nutrition, and lifestyle opportunities have all been linked to higher rates of disablement. Second, discursively, people from oppressed and excluded groups have been cast as disabled through patterns of social exclusion and stigmatisation. Suffla et al. (2001) state that ‘organised psychology’s historical role and evolution has often mimicked and mirrored sociohistorical developments within the South African social formation at different historical junctures, thus acting as a microcosm of South African society at different periods’ (p. 28). The relative silence around disability in South African psychology follows this pattern.

There are encouraging signs internationally and in South Africa (largely outside of psychology) of including disability issues in broader discussions. For example, Van Onselen’s (2021) study of migrant workers travelling to and from Mozambique in the context of South African mining deals centrally with disablement of various kinds, adding in part to a tradition of scholarship linking disablement to extractive labour practices in the region (Livingston, 2005). Further afield, Taylor (2024) demonstrates the centrality of disability issues to ecological and environmental considerations. Similarly, Imada (2022) links questions of coloniality to histories of medical incarceration, and even classic works in disability studies (see, e.g., Garland-Thomson, 2009) have clear implications for how we see race and other forms of difference. Despite this, even though intersectionality is commonly espoused as key to understanding social exclusion and inclusion, disability is not uncommonly left out of analyses, both locally and internationally (Watermeyer & Swartz, 2023a, 2023b).

Transformation efforts in South African psychology postdemocracy have largely focused on race (e.g., Canham, 2018; Stevens & Sonn, 2021), understandably and necessarily given our fraught racial history. Gender and sexual orientation have been another focal area for transformation in psychology in the local context (e.g., Kiguwa & Segalo, 2019; Macleod et al., 2020). However, other aspects of identity, particularly disability, have largely been overlooked. In fact, disability and postcolonial scholars have historically worked independently, without complementing each other (Chataika & Goodley, 2024).

The lack of centering disability in the transformation agenda in psychology in South Africa is also seen in the country’s Psychological Society’s (PsySSA) lack of disability representation – both in their staff complement and in a lack of a disability division. This is even though PsySSA’s (2011) vision is ‘to advance South African Psychology as a science and profession of global stature and promote psychological praxis as relevant, proactive and responsive to societal needs and well-being’. Similarly, equity requirements for admission to professional training in psychology under the auspices of the Health Professions Council of South Africa are clear on racial issues but silent about disability, despite the fact that there is every likelihood that there may be more need for services in the health sector for people with disabilities than for other groups (Watermeyer & Swartz, 2023b).

Disability studies and psychology: silence

Calls to integrate a psychological analysis into disability studies are often not well received (Watermeyer, 2013, p. 1). Similarly, contemporary disability studies have not been very receptive to psychological inputs and analyses. This may be for various reasons. Historically, psychology has not fit well within the area of disability, taking a very historical, medical model view of disability where disability is situated within the realm of the body as something broken that needs to be remediated or cured (Hughes & Paterson, 1997). Difference is ‘traditionally positioned as deviance, abnormality or pathology in psychology texts’ (Harvey & Kotze, 2022, p. 163). The implication is that those with a disability (intellectual and psychosocial being the most common disabilities encountered by psychologists) are psychologically damaged and the structural barriers to inclusion are ignored. The very act of diagnosing people in psychology positions intellectual and psychosocial disabilities within the body and mind – ignoring the social model of disability and more recent developments, all of which emphasise disability not as an issue of bodily difference, but centrally as a question of social exclusion (Goodley, 2014). The social model views disabled people as healthy, not crazy – it is society and its exclusions in terms of non-inclusive schools and stigma that are disabling (Thomas, 2004). Given this background, some disability theorists are concerned that a rapprochement with psychology could entail reverting to biologising and stigmatising disability – viewing disabled people as ill rather than socially excluded.

There is of course a broader politics to this. For example, the act of psychometrically assessing in psychology was used by the apartheid government to ‘legitimately’ divide along racial lines (Duncan et al., 2004). Transcultural psychiatry, and arguably psychology, relied on the ‘process of “othering” – black and colonized peoples became objects of research, their voices excluded, their bodies objects of interest’ (Swartz, 2009, p. 92). Besides the obvious exclusion and divisive problems this brought, within what may be termed medical model disability studies, psychology continued to position disability within the individual body. Yet, disability is so much more than medical and individual; it is, as Watermeyer (2013) points out, emotive and multilayered – political, social, physical, and affective. Subsequently, and more positively, disability studies has been approached by many angles and stakeholders, including by health professionals, activists, academics, and disabled people themselves, yet these various parties often do not talk to each other or find agreement, which is a pity because disability is multifaceted and would benefit from a cohesive and mutual approach. At best, psychological practice should embrace integration and complexity, and thus, perhaps it is well placed to offer something to disability studies.

Disability arouses difficult emotions, making it hard to think about and engage with (Watermeyer, 2013). Everyone has fantasies about disability and becoming disabled. After all, it is the one minority group which we could all become a part of without our control – anyone could develop a disability via an illness, accident, or ageing. Acquired disability is a very real reality. This ever-present, mostly unconscious threat causes us to struggle to think about, and approach disability in any meaningful, helpful, integrated way. Instead, the go-to response is to act – disabled people are controlled, treated, assessed, managed (Watermeyer, 2013). Consequently, disability is often approached in an ambivalent manner, where it is seen in one of two lights – as something very positive which the individual can master and ‘overcome’, a comforting stance because if we develop a disability, we could potentially ‘beat’ it. There is also a convenient opportunity here for projective identification – the fears we all have about our own brokenness and vulnerability can be projected into disabled people, who then are called upon to manage this vulnerability (Watermeyer, 2013). Famously, the disability studies scholar Tom Shakespeare (1994) describes disabled people as ‘dustbins for disavowal’. To the psychologically minded, this is a clear reference to projective identification, but Shakespeare does not overtly use psychological language or formulation in this work.

There are other psychological processes at work when we think of disability. The notion of the supercrip is pertinent here. The disabled person may be portrayed as a hero who overcomes his disability despite all odds – think of society’s depiction of Oscar Pistorius from long before he shot Reeva Steenkamp (Harvey, 2015b; Swartz & Watermeyer, 2008). He was put on a pedestal – despite his disability he was a world-renowned Paralympian champion and, crucially, one who could compete with nondisabled athletes. Alternatively, disability is engaged with as something very negative, that needs to be pitied (Harvey, 2015a), in doing so the disabled person is relegated to the margins of society and the nondisabled and all their (unconscious) anxieties about potentially becoming disabled are managed. After the death of Steenkamp, as part of Pistorius being denigrated as a murderer, for obvious reasons, his disability was seen in a very different light where he was portrayed as vulnerable by some, and somewhat monstrous by others. This is a very unintegrated viewpoint. Consequently, the anxiety that is provoked by encountering disability within oneself or within another is made tolerable, and ambiguity escaped, and disability and all its accompanying feelings is controlled.

This raises an important notion, that of power dynamics and how society is controlled along biopolitical lines: the socio-political world is ordered along various compulsory forms of identity, one of these being compulsory able-bodiedness. The nondisabled hold the power in society over the disabled, just as the heterosexual majority holds the power over the queer minority. Thus, the biological features of the human body are organised into a political existence (Harvey, 2024; Mills, 2015). The idealised able-bodied, non-disabled individual is normalised and institutionalised (Harvey, 2024). And the unintegrated divide between ‘them and us’, disabled and able-bodied remains.

Heidi Lourens (2021) writes about the ‘deafening silence around the often forgotten category of disability’ within psychology, specifically referring to her experience as a disabled psychologist and academic (p. 1208). The first author of the current article, Clare Harvey, argues independently and with a colleague (Harvey, 2024; Harvey & Kotze, 2022) that while academia has seen a rise in racial activism and inclusion of other, marginalised voices, including black and women voices, those of disabled academics, and for the purposes here, disabled psychology academics continue to go largely unheard in terms of the psychology of disability studies.

Lourens (2021, p. 1211) begins to give us a sense of what it is like to be disabled (specifically visually impaired) and in the field of psychology by stating that she feels included within the discipline as long as she performs independence – to supercrip and be as ‘undisabled as one can be’ (Watermeyer, 2017, p. 153). This suggests an unintegrated position in the way she presents herself and thinks about her disability, she feels that it is necessary to ‘split off’ her disability and keep it as an unintegrated part of herself, so as to be ‘accepted’, and thus meet society’s standards of compulsory able-bodiedness:

Yet, in the midst of the comforting embrace of my work environment, I cannot silence the nagging whisperings of my past telling me that this inclusion is contingent upon my enduring performances of independence, courage, and cheerfulness (Bantjes et al., 2019). Collegial relationships continue to feel precarious – as if one slip of the able-bodied mask, one peek into my life with some limitations, will scare people away and relegate me to the lonely margins of life.

Here, Lourens suggests that she needs to pretend to not be disabled in order to be accepted by her colleagues – colleagues who are practicing psychologists who work with difference and disability. If she supercrips and presents as happy, independent, and ‘beating’ her disability, she will be included – suggesting that her disability when foregrounded is too anxiety provoking for her colleagues to manage because they too could develop a limitation, a disability.

She goes on to say:

And this is exactly where I positioned myself within the academe – as a member of the nondisabled community. To my mind, I needed to tone down, to gloss over any trace of my disabled self in order to fit into the academic space and the world at large – the world that we all inhabit but where we don’t all belong (Garland-Thomson, 2011). I internalised the oppressive messages from the nondisabled world that showing vulnerability and dependency meant being relegated to the margins of society (Reeve, 2012). For if I didn’t conform, I feared being exiled – exiled to the place of infancy, exiled to the place of pathetic blind (wo)man. Exiled to the lonely place of difference. But escaping exile and protecting my inclusion within a space I’ve come to experience as my homeland has been hard work (p. 1212).

The power dynamics of society and academia, specifically in psychology, are evident in that these spaces are reserved for the compulsory able-bodied. Hence, disability is split off and the disabled are silenced, and psychology and disability studies continue to exist separately, and the anxieties about disability are managed. According to Lourens, her disability needs to be controlled, not only by those around her – the non-disabled, but also by herself as a disabled person – in order to not be relegated to the margins of society. Furthermore, this takes its toll since it is hard work to keep silent about one’s disabled experience and perform ‘able-bodiedness’. This suggests the politics of performance of the other: ‘[T]he neoliberal performance standards and discourse around disability automatically position them [disabled people] as misfits . . . and create disabling conditions within which they must perform and measure up’ (Waterfield et al., 2018, p. 344).

In another article, Lourens (2018, p. 568) argues that it is the inaccessible psychology academic environment that makes it difficult to own and live one’s disabled identity – ‘the politics of shutting up’ so as to be ‘accepted’, suggesting the social model understanding of disabled experience:

Now, it could also be argued that I was silent [in the staff meeting on transformation in the academy] because I was still new at the department. And perhaps this was partly true. But, looking back on my life, I can see the traces of all too many silences. I believe that my voicelessness in the staff meeting, at least in part, arose from my internalisation of a largely uninhabitable world (p. 572).

Lourens goes on to argue that the ‘tentacles of these external realities . . . become entrenched in the psyche of disabled persons’ (p. 571), and disabled people continue to silence their disabled identities and become alienated from a part of themselves. This split off aspect of disabled identity ‘becomes shameful and silent’ (p. 573), and the able-bodied continue to go unchallenged by their power status. And the powerful biopolitics of compulsory able-bodiedness reigns.

Clare Harvey (2024) discusses this act of silencing disabled people by, and in, the profession of psychology. She documents her experience of going for an interview during her Clinical Psychology Masters year for an internship placement:

[Upon entering the interview] I was . . . asked to leave the room and wait. My anxiety sky-rocketed – what had stopped the process? A few minutes later I was called in again . . . except now the chair that I was meant to sit in had been replaced by a child’s chair. I was alarmed . . . what had just transpired? We chatted briefly about it and how this room of experienced psychologists thought I’d prefer a child’s chair . . . They had presumed how I felt and thus would behave . . . this reminded me that others often perceive me as existing in a child’s body. Needless to say, the interview did not go smoothly . . . The next few weeks were painful – I struggled to process what had occurred . . . a tricky balance of trying to ‘do’ my disability, but also not perform my otherness. I still wonder which parts of my identities are tied up with my otherness (p. 122).

Clare argues that ‘the battlegrounds of professional power relations are apparent – where disability elides competence’ (p. 122). The normative standards work to exclude difference, otherness, disability, and thus the anxiety-provoking discomfort elicited by disability is managed. Indeed

in the complex emotional politics of disability, disabled people are called upon not only to manage their own disability but also to manage how nondisabled people respond to disability – disabled people are tasked with taking on the emotional labour of making disability palatable for nondisabled people. (Swartz et al., 2020, p. 155)

Clare is silenced in this setting so as to allow the powerfully ‘normal’, able-bodied to manage their discomfort and to justify their irrational othering practices (Ahmed, 2009). In this way, the marginalised continue to be oppressed and the hegemonic structures go unchallenged. Clare goes on to say that the insistence of the interviewers for her to sit on a child’s chair seems to be a demonstration of understanding and solidarity of the challenges of having dwarfism. And the problem of her deviant body is ‘managed’ by the child’s chair. She is relegated to the position of child and is silenced – someone to be seen, not heard. In this instance, disability is individualised and located within the physical body – separating disability from societal structures that impose compulsory able-bodiedness. The experience of disability is dislocated from the larger political context, silencing Clare since the interviewers’ position disability as a problem that can and should be solved. In this instance, psychology fails to enact inclusiveness and the whole subjectivity and experience of a disabled psychologist is ignored.

Another reflection from Clare illustrates the silencing of disabled psychologists and academics:

Another incident . . . an interview I endured for an academic job as a lecturer . . . The interview had gone smoothly until the very last question [asked by a psychologist] . . . ‘You often present as arrogant, could you tell us a bit about this?’ I mumbled something about being unaware that others experience me as arrogant and the clichéd response that this is something I’d like to work on in therapy. I also responded that because of my height I am acutely aware of first impressions and thus I try present as confident to put the other at ease. Perhaps this comes across as arrogant. I was thanked for my response and was never given the job. I was hurt for a long time after this encounter. Why did I link my perceived arrogance to my otherness? Did I play into the panel’s . . . perceptions of me? . . . did this result in my exclusion? I wasn’t just othered, I was prescribed a ‘deviant’ attribute . . . (Harvey, 2024, p. 124).

‘My struggles around legitimacy often take the form of an extreme vulnerability, belied by the perceived bravado and arrogance perceived by my peers. The vulnerability is mediated by careful regulation of how I present’ (Harvey, 2024, p. 124). Clare reflects how she is called upon to navigate normativity – able-bodiedness, by being expected to present her disability and otherness in more ‘appropriate’ ways. The social model understanding of disability is at play here since society’s power dynamics enforce a behavioural response in the other and in this way, normativity is upheld, and the disabled are silenced. Yet, Clare also tries to defy this process by finding her voice and hiding her vulnerabilities and difference by presenting as vigorously independent (Watermeyer, 2009).

As Clare (Harvey, 2024) goes on to state, it is difficult not to think of the gatekeepers of psychology as ignorant to the needs of disabled people and that they ‘reserve psychology for those who perform “psychologist” appropriately’ – that is, not disabled (p. 124). The silencing of disability experience and disabled people by society is mimicked in the profession of psychology, in the psychology professionals’ awkward attempts to enact inclusivity.

Yet, Clare also talks about how disabled people can use their disability and otherness to bring about change in psychology – something this article is attempting to do. Sharing more of her reflections will aid in this:

. . . [the] need to be more conscious of including ‘other’ candidates in professional psychological training is a very valid one, yet fraught with difficulties. I sit every year in selections of . . . candidates . . . and very seldomly is this topic highlighted . . . where does this leave other minority groups? . . . Perhaps it is because there are few ‘others’ to speak out and fight for the inclusion of people like [me] . . . Perhaps it is that those in selection panels do not want to face their own anxieties and sense of vulnerability that they are temporarily . . . able-bodied. What would it mean for them that they would have to train . . . psychologists who hold a mirror up to their own sense of bodily fallibility? . . . In fact, very few-to-no disabled candidates seem to apply . . . this says something of the very powerful message the psychology profession puts out . . . How can one who is different be a blank slate for clients? [Originally, it was thought that psychoanalysis should be conducted ‘under privation – in a state of abstinence’ by the analyst (Freud, 1955, p. 163).] I also . . . don’t actively seek out disabled applicants, and I don’t suggest to my colleagues that this should be part of our mandate. Why is this? It is not at all easy being in a profession and department where I am very much the minority.

. . . If psychology cannot be accepting of otherness, then what hope do we have of other disciplines/spaces/people to be accepting? [however], . . . I’m not feeling pessimistic . . . In fact . . . thinking about these issues and putting them on paper is making me feel exhilarated . . . here I am . . . reinforcing my difference, yet choosing to do so in a way that I want done – it is not being done to me – and I think this is a crucial point . . . (Harvey, 2024, p. 125).

Closing thoughts

There are South African psychologists working on disability – for example, Jason Bantjes, Clare Harvey, Heidi Lourens, Siyabulela Mkabile, Leslie Swartz, Brian Watermeyer, and others. It is not an accident, though, that many of their publications are not in psychology journals. Brian Watermeyer, for example, is globally recognised as a leading figure in psychoanalytically informed disability research. His ground-breaking text (Watermeyer, 2013) has been widely cited globally but hardly at all in other South African psychology texts. A colleague teaching on a clinical psychology programme decided to use disability as an example and a way into thinking about social exclusion, oppression, and internalisation of stigmatisation, but was told by others that a focus on disability is ‘too narrow’. Our argument is precisely the opposite – because disability continues to be so silenced, and not seen as important, looking closely at disability oppression and exclusion provides a way into understanding other forms of exclusion and oppression, including racial and gender oppression. Disability is common, and there are very few people who do not have experience of it in their family or work life. As the population ages (and this is a factor even in Africa, which has a relatively young population), disability and care issues are likely to become more and more salient (Swartz, 2023b). Disability, as the notable disability studies scholar Rosemarie Garland–Thomson is often quoted as saying, is nowhere until you see it. Then it is everywhere. It is certainly true that despite advances, issues of race and gender, for example, have not sufficiently been considered in South African psychology scholarship. A lens which considers race and gender alongside disability and other issues, including issues concerning the complex racialised and gendered politics of care (Mahilall & Swartz, 2022; Swartz, 2012) may be helpful not just in drawing attention to disability as a core concern, but also in helping us think more clearly and in a more embodied way about race, gender, class, and environmental issues, among others, as well.

We need to continue to integrate psychology and disability studies by celebrating disabled psychologists and encouraging psychological reflections on disabled experiences. The splits along abled and disabled identities need to stop, and the tendency to silence psychology within disability studies and vice versa needs to be challenged. Some power needs to be wrestled back from the various biopolitical acts in the psychology profession (Harvey, 2024). Psychology cannot continue to allow disabled people to be silenced.