DISRUPTING THE USUAL USE OF SPACE AND PLACE
On an evening in 2016, the usually earnest atmosphere of an academic meeting and lecture venue was transformed by the sound of chatter, laughter, and exclamation, as people examined sketches of bones displayed on pin boards and observed, with varying degrees of interest, a group of students demonstrating a version of surya namaskar, the sun salutation, practised in yoga. On a table, copies of booklets containing poems and stories held the attention of those who stopped to read them. As the crowd made their way down to the lecture theatre to listen to music, singing, poetry, and spoken word pieces, they passed an exhibition of photos. Some participants cast a quick eye over the images, others stopped and looked, and read the captions underneath. The creators of these images engaged in conversations with the viewers – some of which were serious and some light-hearted. A similar scene – one that disrupted the usual use of space and place – had occurred in 2015 in another venue where other images addressing the experiences of being medical students in the Faculty of Health Sciences at the University of Cape Town (UCT), in South Africa, were exhibited (Figures 1 & 2).
The writing, drawings, yoga, music, and photographs were all part of evenings showcasing month-long special study modules facilitated by the Primary Health Care Directorate and undertaken by second year medical students registered for the Bachelor of Medicine, Bachelor of Surgery (MBChB) degree. These special study modules were linked either to the field of Medical and Health Humanities (MHH); or feminisms as politics, pedagogy, and practice; or both.
The exhibitions of photographs - and the processes that led to their creation and display – almost never happened. Attempts to draw on the inter- and transdisciplinary nature of the field of MHH and feminist research and teaching sensibilities (those that unashamedly focus on addressing gender and other identities, subjectivities, power, hierarchies and privilege) and cultivate co-operative rather than competitive ways of learning, were met with a combination of disciplinary policing, fundamental disagreements about what research is and does; and a lack of epistemic generosity that, we argue, resulted in a form of epistemic violence.
Having provided a description of events that occurred as a direct result of wider interest in MHH, this article will now provide a brief historical overview of the state of MHH at the university, and explain the nature and purpose of the special study module on Intersecting Identities that resulted in the exhibition. The article then turns specifically to an analysis of the exchange of correspondence between ourselves (as convenors of the special study module) and the Faculty’s research ethics committee, and uses this case study to explore the responses indicated above. Finally, the article reflects critically on existing and emerging connections and intersections between feminist methodologies and MHH.
Medical and Health Humanities as Field and Part of the Faculty of Health Sciences’ Curricula
Medical Humanities (MH), called Medical and Health Humanities (MHH) in South Africa, is a nascent field in the country. While there are people in academia, the creative arts, health care, and activist spaces whose work and practice may embody MHH, the formal use of the term and organising around it is a recent phenomenon. The founding group who initiated MHH came from three different universities in South Africa, and included an anthropologist, an historian, and a physician.
In 2013 the largest public funding body, the National Research Foundation, recognised MHH as a ‘new knowledge field’ and provided seed funding for it to develop further. Conferences around MHH have been held in South Africa, special interest groups on health professions education have been formed, and in 2017 the first conference in the region outside of South Africa, ‘Medical Humanities in Africa’ was held in Malawi. In late 2014 the first Senior Lecturer in Medical Humanities was appointed in the Primary Health Care Directorate at UCT, and in 2015 ‘Medicine and the Arts’ - a Massive Open Online Course (MOOC) - was launched by two of the founding network members.
Two informal networks have been established as a way of connecting people interested in MHH: Medical and Health Humanities Africa and the Malawi Medical Humanities Network. Much of the administration and labour behind these networks (and indeed behind the entire field) is done on a voluntary basis and is dependent on people having sufficient energy and time outside of their existing work to contribute to the development of the field.
In conversations and conferences, the intellectual considerations and orientations of the field, its development in English-speaking countries, and the relevance (or otherwise) of its emergence in South Africa and on the continent in relation to knowledge and other hierarchies, have been debated and considered. Some of these discussions, along with examples of MHH in practice, form part of a special issue (SI) of the British Medical Journal’s Medical Humanities Journal to be published at the end of 2018. With contributors from South Africa, Malawi, Kenya, and Nigeria, the SI is concerned with MHH in Africa as an emerging field and its relationship to issues of social justice, access, and inclusion. MHH is also evident in inter- and transdisciplinary research projects and creative processes that are underway in the region, and in interventions in health sciences education.
In the Faculty of Health Sciences at UCT efforts to introduce students to ideas of trans- and interdisciplinary work with a strong feminist bent, and the potential for reimagining how health (and concerns related to health) are understood and could potentially be reimagined, occur primarily at the undergraduate level. In the undergraduate medical curriculum and in a third-year course in Physiotherapy, one of the authors runs a component called Critical Health Humanities that addresses issues of power, privilege, identities, the climate crises, and social (in)justice. The courses provide students with a very basic introduction to identity categories such as ‘race’, class, gender, sexuality and sexual orientation, and political issues such as structural violence, witnessing, and feminism.
Part of the undergraduate curriculum includes a month-long special study module, and it was the idea to work collectively on such a module that brought the three academics together over coffee. Our disciplinary backgrounds and experiences include history, social work, sociology, medicine, Non-Governmental Organisation work, activism, and academia, and are all shaped by interests in social justice, feminisms, and anti-racism. We have been part of the faculty for different lengths of time but share a concern about the lack of space in the curricula for students to think about and engage with theories linked to identity politics. Our plans to address this concern emerged just before, and overlapped with, the emergence of the #RhodesMustFall movement and at a time when the rumblings of what would become the #FeesMustFall movement were increasingly audible.
A special study module that combined our skills, knowledge, and interests, and made use of a creative methodology that would allow students to create and apply knowledge in multiple formats, seemed like a good idea and an interesting teaching and learning opportunity. By exploring ways of seeing, being, and reading and enabling the use of photographic images, we wanted to facilitate a process in which theory, thought, and creativity would be brought together to allow students to make sense of their personal experiences on campus. MHH, with its specific encouragement of inter- and transdisciplinarity, and the embracing of more creative expressions alongside more standard academic work, provided a broad field from which we could draw inspiration, whilst feminist research methods were central to our academic practice, and to what we wanted students to experience.
Medical Health Humanities, Feminist Research, and Feminist Researchers
In working through and making sense of what MHH could look like on our campus, and what we could potentially create, we have drawn from existing discussions and ideas about medical humanities. While we are currently a long way from achieving it, Pattison’s vision of medical humanities as ‘a loose, porous, ill defined and inclusive movement of individuals and groups, practitioners, performers, analysts, and theorists, with different backgrounds, skills, perspectives, and interests on all matters to do with being human and being healthy’ (Pattison 2003: 33) speaks to our longer term ambitions for MHH.
We share too, Pattison’s ideas that MHH would value diversity and multiple epistemologies and actively ensure that ‘bridges are built and conversations occur that reveal things to participants that they could not have learned within their own original limits and worldviews’ (Pattison 2003: 34). Our discussions as friends and colleagues have allowed us to experience the richness of such interactions and we wanted to see if they could be recreated in the special study module.
Our personal and collective teaching and research practices bear similarities to Viney et al.’s (2015) ideas of critical medical humanities that embraces entanglement and risk-taking. They also stand in ‘resistance to positivist biomedical ‘reductionism’ and understand MHH as:
a powerful tool through which to address not only the meaning and historico-cultural contexts of health and illness, but their very production, concrescence and dispersal across the precarious, unequal and environmentally degraded societies in which we live’. (Viney et al. 2015: 2)
This understanding speaks to ideals of social justice inherent in our work and thinking. In South Africa, current inequities and inequality are directly linked to histories predicated on the creation and reinforcement of hierarchical identity politics linked to, amongst other things, ‘race’, class, gender, and sexual orientation.
In relation particularly to what our experiences and disciplinary backgrounds allow us to offer in terms of pedagogy and epistemologies, we concur with Macnaughton’s analysis, and call, for recognising the ‘non-instrumental value of humanities’ (Macnaughton 2000) and, we would add, the value of experiences outside of academia. The primary ‘value’ that humanities, arts, social sciences, and experiences outside of academia bring to health sciences training and health care practices are, as Macnaughton argues
education [as] a process, not a single objective’ that facilitates ‘personal development’ by allowing students to ‘consider different ways of perceiving the world’ and thus ‘encourage(s) a critical and questioning attitude’ (Macnaughton 2000: 25, 26).
Of particular relevance in our context is the ability of these broad disciplinary fields and practices to create ‘the opportunity for students to step outside the pervasive ethos of the medical world and experience a kind of “counter culture”’ (Macnaughton 2000: 25).
The current (ill)health landscape in South Africa (and the region more generally) is mediated by identity hierarchies and privileges that have continually been brought to the fore. The aspects of critical MHH articulated above link directly to our interests in identities and resonate with our feminist research practices. Traditionally, feminist research is associated with qualitative methodology. In early discussions of feminist research, quantitative research methods were sharply criticised as masculinist and positivist, asserting an incontestable and objective ‘truth’ (Keller 1985). Feminist researchers rejected the idea that any knowledge (no matter through which method it has been asserted) can be objective, as historical, social and political contexts always shape the method itself and the interpretation of its findings. In more recent years, feminist researchers have acknowledged that feminist research can use both quantitative and qualitative techniques, and that both have the potential to be consistent with feminist epistemologies and politics (Campbell and Wasco 2000).
The commonality of ‘feminist research’, regardless of its methodology, is its ideology of undertaking research that recognises and challenges systemic gender disparities, is participant-focused, and centres upon an ethics of care. Thus, there are principles of feminist research – what makes feminist research ‘feminist’ – underlying all forms of feminist research and knowledge creation (Kim 1997). These include paying attention to the importance of gender as a central element of social life and oppression; challenging the norm of objectivity to incorporate subjectivity into research; the reflexivity of the researcher throughout the research process, which includes an awareness and negotiation of the potential power imbalances between researcher and research participants; avoiding harm or exploitation of those who are the ‘subjects’ and ‘objects’ of knowledge; and a commitment to gendered empowerment or emancipation through feminist research (Bourke et al. 2009; Cook and Fonow 1986; DeVault, 1996).
Feminist research frameworks in health sciences research, whether they be qualitative, quantitative or a mix of both methods, focus on how health sciences research can benefit marginalised communities, as well as challenge unequal power and knowledge dynamics. The latter specifically includes a commitment to reducing the unequal power relationships between researchers and the ‘researched’ (best exemplified in the widely used term ‘research subjects’, which implies that as mere subjects, people participating in research have no history, agency or emotions). Key feminist strategies to reduce this power imbalance include the participation of research participants in data collection, and the interpretation of findings and implementation of research results (Cook and Fonow 1986). This acknowledges the inherent knowledges that participants can bring to research processes, and thus erases the ‘neat boundary’ between researcher and research participants that is so often seen as a requirement for ‘objective’, quantitative research (Gunaratnam and Hamilton 2017).
Regardless of the disciplinary backgrounds that the three of us were trained in, and the topics we have written on, we share an understanding of the practices of feminist research consistent with the aforementioned characteristics. Our varying feminisms have framed our individual research and teaching and provided a point of connection between us as friends, and as colleagues. We were keen to work together on a collective project linked to health sciences education that would bring our individual interests, disciplinary expertise, and engagement with campus politics together while also contributing to the development of MHH on the campus.
WAYS OF SEEING AND MAKING SENSE
Out of our discussions emerged the ‘Intersecting Identities’ special study module, subtitled ‘the dynamics of negotiating the institutional context of UCT’s Faculty of Health Sciences as Second Year Medical Students’. For the modules, the 250-260 undergraduate medical students indicate their preferred choices from over 100 different offerings. The size of a module is determined by the convenors and can range from one or two students to several dozen (over the two years that we ran the module we had nine students in total take part in the process). The aims of the special study modules are to give students a chance to explore specialist interests; experience lab work; and/or develop research, report writing and literature review skills. While each module has to have a written component and all assessed work is marked using standard rubrics, the special study module provides one of the most flexible spaces in the curriculum for course content and teaching and learning styles.
In devising the module, we combined teaching and learning practices from humanities and creative arts, but adapted them to support students exposed to a predominantly positivist engagement with subject matter. This positivist engagement is part of the hegemonic scientific discourse that underpins the experience and pedagogy of medical education in the Faculty (Müller and Crawford-Browne 2013). Through our discussions with students and assessments of academic tasks designed to encourage basic critical reading and critical analysis, it appeared to us that the dominant pedagogy in the undergraduate curriculum impeded students’ abilities to understand, deconstruct, and make sense of their experiences on a socially complex campus influenced by the histories of oppression that have shaped South Africa’s socio-economic and political realities.
Our special study module required students to read for and participate in a weekly, themed seminar; keep a journal in which they reflected on the experiences of being part of the module; undertake an historical ‘walking tour’ to key museums and sites of historical importance in the city; write a report responding to a set question relating to identities; take and discuss at least five photographs weekly; and, lastly, select five images to be part of a public exhibition. Students were required to lead one seminar and engage fully in others. The first seminar was modelled for students with one convenor leading the seminar and the others asking questions or raising discussion points and encouraging students to participate. The convenors also provided suggestions on how to prepare for seminars and engage with arguments put forward in the readings by discussing techniques such as mind-mapping and basic presentation skills. In addition to the seminars, students participated in a photography workshop and were provided with digital cameras. Each week the students took images that captured the theme under discussion in the seminar, and presented them to the group who discussed them. The discussions included comments on the contents of the photographs, but also the feelings they invoked, the multiple interpretations they suggested to different members of the group, and how they related to the readings that had formed the foundation of the seminar.
The methodology we used for the special study module is an adaptation of the Photovoice research method. Photovoice is a community-based participatory action research methodology that has increasingly been used in health science research as a qualitative approach to engage with people’s experiences of social environments (Catalani and Minkler 2010). The early designers of Photovoice as a research methodology, Caroline Wang and Mary Ann Burris, identified the methodology as having three goals, ‘1) to enable people to record and reflect their community’s strengths and concerns, 2) to promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and 3) to reach policy makers’ (Wang and Burris 1997: 369). One of the key advantages of Photovoice is that it allows the participant’s voices and visualisations to come through with minimal interpretation from the researchers and therefore foregrounds participants’ understandings, engagements, and analysis of concerns and strengths.
Our interests in the special study module aligned primarily with the first two goals – recording and reflecting the strengths and concerns of a particular group of students on a health sciences campus, and promoting critical dialogue and knowledge about important issues relating to identities and institutional culture at the Faculty. In relation to the third goal, our intention was to reach staff and other managerial decision-makers in the Faculty in order to increase awareness about students’ experiences, but it was not directly linked to policy transformation per se.
We chose to focus the module on intersecting identities that built on the basic introductions to ‘race’, class, gender, and sexuality that we had included in Critical Health Humanities as part of the main curriculum. This ensured that students who were interested in exploring identity politics further had an opportunity to build on this academic foundation. Students added identity-related concerns that were importance to them, including body image, dress codes, accents, mental health, and appearing ‘professional’. The participants were given a specific question to think about and return to in the seminars and in the sharing of photos: ‘How have intersecting social structures of ‘race’, gender, class, sexual orientation, ability, and profession shaped second-year medical students’ experiences of the UCT’s Faculty of Health Sciences?’ Students were invited to narrow this question down to the intersecting identities they were most interested in, but were required to engage in some way with the listed identities through the sharing of photos. The combination of activities allowed for new ways of seeing, knowing, and making sense of lived experiences, to occur.
The readings and running of seminars supported critical reading, analysis, and discussion. The taking of photographs allowed for creativity and imagination to enter the process while the discussions of the photographs supported the development of visual literacy and analysis. By acknowledging the subjective experiences linked to taking and viewing images and discussing the emotional responses that images evoked, participants were able to use the images to talk through and about experiences that may not otherwise have been discussed in the curriculum. By guiding the discussions gently back to the readings and working together to see how the visual images, lived experiences and theories related to each other, we created bridges into humanities discourses. Significantly, students’ feelings of anger and hurt could be raised and discussed in the safety of the smaller group discussions and, if students’ chose too, also held up in appropriate forms of public witnessing through the images selected for the exhibition.
The Photovoice research method was used both to explore students’ experiences of medical education and to enable students to apply the theories and ideas they had previously been exposed to directly to their lived experiences as students. As one participant, who defined themselves as a ‘black woman’, noted:
While using Photovoice to show my experiences and relating it to what other authors and researchers have said in my Reflective Journal, I started to realise that I was thinking about identities more critically. The entire SSM made me realise that as long as I ignored the discrimination and oppression of other identities that I did not consider myself being part of, I would passively become the type of person who participates [in] oppressive acts.
The special study module and the use of reading, talking, and creating images allowed participants to explore concepts of identity; objectivity and subjectivity within research; the influence of identity and hegemonic practices in the research endeavour; and the sensitivity of placing personal experience within the public domain. All of these aspects are valuable learning processes for future health care professionals and the special study module provided an example of what might be possible in feminist and MHH-inspired teaching spaces. Such spaces, however, are incredibly difficult to open, as we discovered when the module was almost cancelled.
‘MINIMAL OBJECTIVITY AND INHERENT BIAS’ – THE ETHICS COMMITTEE WRITES AND THE FEMINISTS RESPOND
To run the module, we needed to apply for ethics approval from the Faculty of Health Sciences Human Research Ethics Committee, which is composed of academic researchers and healthcare professionals based mainly in the Faculty. Not all submitted proposals are reviewed by the full committee: proposals that meet certain criteria can be considered for ‘expedited review’ – which means that they are reviewed by one or two anonymous reviewers, who are based in the wider health sciences faculty. These reviewers’ comments are then reviewed and evaluated by the executive committee, who makes the final decision on approval.
In our case, approval was particularly required if any research related to the special study module was planned. We applied for an expedited review process, which required the completion of a synopsis of the study, a more extensive application, guarantees about permissions and protection of the identities of photo subjects, the provision of background information about why the study was being suggested, and the completion of different forms including the undergraduate student research protocol.
The extensive application included information on the study design; characteristics of the study population (in this case the participants in the module); the recruitment process; research procedures and data collection methods; data safety and analysis; descriptions of potential risks and benefits; checks on ensuring consent, privacy and confidentiality; emergency care plans; information on expectations at the end of the study; and a list of references. In addition, we included the abstract that students used to select the special study module, the course outline, and examples of the consent forms for both participants in the module and for any people who agreed to pose for photographs in a way that made them identifiable. The additional information was provided to ensure transparency regarding the information participants had available to them when choosing to take part in the process; to indicate how the special study module was structured; and to show clearly how the seminars, photography, readings, and report writing components fitted together.
The ethics committee is the only available mechanism in the faculty that can provide ethics approval for research involving people and, where students are involved, initial permission from the committee has to be obtained and submitted with additional forms to the university’s Department of Student Affairs. In total (excluding acknowledgement and basic administrative emails), our correspondence with the committee involved the initial submission, the initial response letter from the committee, our response to that letter, and the final committee approval letter, some 50-odd pages of correspondence and forms.
The committee’s two-page response to our application reveals a number of crucial issues that are important for feminist and/or MHH research in health sciences faculties. Before granting approval for the module to go ahead the committee requested that we respond to a series of issues. Some of these issues were administrative requirements that were easily resolved, while others reveal a fundamental clash of pedagogies; a central disagreement about what research is (or can be) and what research can or cannot do; and a lack of epistemic generosity that resulted in a form of epistemic (disciplinary) violence. The committee’s primary concerns were linked to what constituted recognisable research; ideas about objectivity, bias, and ‘risk’; choice of methodologies; and the validity of creating and sharing (uncomfortable) findings more broadly, using visual images. As we will show in the next sections, these concerns are also examples of the ‘ethics creep’ that Kevin Haggerty (2004) has outlined. ‘Ethics creep’ is a process through which:
the regulatory structure of the ethics bureaucracy is expanding outward, colonizing new groups, practices, and institutions, while at the same time intensifying the regulation of practices deemed to fall within its official ambit (Haggerty 2004: 394).
Objectivity and Bias in Recognisable Research
The first instance of framing research and pedagogy being policed, rather than supervised, by the ethics committee came at the beginning of the reply when the committee questioned whether the submitted protocol was research-related, noted that its content was unusual for a course in the faculty, and asked us to provide more clarity about the protocol’s purpose. The ethics committee is not tasked with commenting on either course content or on defining what constitutes ‘recognisable research’ yet the reply suggested that it is. Furthermore, it is unclear how, why, or in relation to which other course contents, a special study module that focused on identities and identity politics was unusual.
In the first part of our six-page response to the committee, we restated the original intention of the proposal – to ensure that the most appropriate levels of professional ethics should be followed as we were working with students. We reiterated too that the committee was the only option available to us if research on the content and pedagogy of the special study module was to be published. We also referred to the mission statement of the university’s Centre for Higher Education Development to draw attention to the University’s commitment to support staff ‘engaging in teaching which contributes to the development of scholarship in relevant education fields’ and argued that considering the discussions on transformation that were taking place across campus, the work was also socially relevant.
The comment relating to ‘recognisable research’ raised numerous questions for us – who were the arbiters of ‘recognisable research’ and what methodological, epistemological, and pedagogical understandings were they using to frame ‘research’? Why were the inclusion of references to peer-reviewed articles (one of the ‘outcomes’ of recognisable research) that provided evidence for our statements not sufficiently identifiable to the reviewers? Did they not provide the roadmaps that could make the research recognisable? Why were the professional qualifications, publication records, and extensive teaching experiences of the staff members who drew up the protocol (and did recognise what was being undertaken as research) disregarded?
The next concern raised by the ethics committee revealed a direct clash of epistemologies and pedagogy. Referring exclusively to the protocol form and not to any of the supporting documentation or more detailed application forms, the ‘Evaluation of minimal risk’ section of the form became the section through which positivist understandings of knowledge became most evident. The letter questioned whether our protocol met the criteria for research, as it lacked sufficient objectivity.
By way of example, the letter referred to a line we had used in providing context related to our evaluation of minimal risk in undergraduate research. We were required to indicate if group vulnerability associated with the proposed participant groups was ‘low’, ‘medium’ or ‘high’ and to explain the group vulnerability and justify the need for research in this group of participants. We evaluated involvement in the special study module as having low minimal risk and justified the need for the research in relation to concerns that had been raised about institutional culture at a Faculty Assembly in April 2015.
At this Assembly, students had articulated that they felt alienated and excluded and had witnessed or experienced prejudices linked to various identities. We noted in our research protocol that the Assembly ‘identified that students do not feel that the Faculty has sufficiently engaged with issues of transformation…’ and went on to indicate that participation in the special study module would allow students to become increasingly aware of the complexity of issues related to social power.
The ethics committee’s response did not engage with our complete application form but focussed on our use of the term ‘feel’. After declaring that there was ‘evidence of minimal objectivity’ the ethics committee’s letter turned to a comment we had used about students’ feelings, and asked whether it was all, or only some students, who felt alienated and excluded. The committee stated that this difference was significant, because, in their opinion, unless we had established that all students felt excluded, and unless the students’ feelings of exclusion had been proven ‘as fact’, we were operating on perceptions and assumptions. Because of this, the committee felt that our suggested research was not a ‘credible’ piece of research.
Attached to the notion of research being ‘objective’ were contentions about research being ‘unbiased’, and the relationship between feelings and research. The next component linked to minimal risk evaluation in the protocol required us to declare the likelihood of any research risk associated with the research. We indicated that the risks were low but acknowledged that through participating, students could potentially become aware of everyday exclusions or discrimination; and that any publication of their work that included their names could result in prejudicial comments or harassment. To mitigate this risk, we reaffirmed that the choice to present work publically, and the inclusion of names or other identifiers, would always remain with the students. We noted, however, that it was unlikely that any experiences of exclusion or discrimination would be more than what students were currently experiencing on a daily basis. Furthermore, the special study module and engagement with theories that would help to make sense of hierarchies and privilege would allow students to develop awareness and skills for managing such situations and therefore enable students to better deal with daily racism, sexism, and homophobia. The ethics committee response to this part of the protocol focussed on the statement linked to a potential increase of awareness about everyday exclusions or discrimination. The committee was concerned that our research protocol was ‘inherently biased’, because we did not consider the students’ feelings of exclusion to be ‘perceptions’ – ‘perceptions’ that the committee thought might be ‘misinterpretations’ or ‘misunderstandings’ – rather than exclusion based on students’ identities.
Challenging the ‘accusation’ of ‘inherent bias’ and ‘minimal objectivity’ required us to bring to the fore and name what we considered to be disciplinary differences in understanding aspects of research and an undermining of our professional capacities. We noted our intellectual alliance with the work of numerous academics interested in feminism and science (including, but not limited to, Haraway 1988 and Hubbard 1989), intellectual histories (Dubow 1995, 2000, 2006), and theories of power and knowledge (Foucault 1994), and declared that ‘none of the convenors would, or could, in good conscience ever describe any research work that they were involved in as ‘objective’’. We explained that our epistemologies of knowledge, based on such work, meant that we ‘reject the notion that research can ever be completely objective’. Referring specifically to any research related to the content of the special study module we reiterated that it ‘[could not], ever, be objective and we would never make claims to such’. We also referred to the work of one of the convenors who has looked specifically at the impact of ideas of ‘objectivity’ and a lack of bias on early research into HIV and AIDS in South Africa (Tsampiras, 2008; 2015). In replying to concerns about ‘minimal objectivity’ and the context of what was said at the student assembly, we had to directly engage with the fiction- presented-as-fact of an idealised researcher working in absolutes and coming to the ‘right’ answer. This required us to insert comments about the importance of reflexivity in research practices and the importance of awareness of the subject positioning of researchers and ‘researched’, alongside arguments for the importance of context-specific, nuanced analyses of findings.
Nowhere in our proposal did we suggest that there was a hegemonic view held by all students or that all students experienced the campus the same way. In our reply we had to reiterate that research could create a space for participants to present narratives that could be heard (and analysed) without attempting to extrapolate broad generalisations for groups of people whose voices were not present. We had to explicitly state that it was possible to contextualise the reasons for pursuing the research against the context of concerns that had been raised during the Faculty Assembly without adhering to an assumption that there was one narrative, one perspective, or one set of feelings held by all students. We had taken it as inherent that the reviewers of our proposal would have sufficient knowledge of feminist research approaches to make it redundant to make such obvious statements. This assumption, which in hindsight requires reappraisal, was based on our experiences at other universities, and as reviewers of projects and proposals in the faculty in which we declared our areas of expertise and indicated if there were specific aspects of projects that were outside of this expertise. We had explicitly chosen to create a space where students could express any number of voices, yet the assumption from the committee was that we would present all voices and reach some sort of conclusion about a hegemonic narrative rather than a series of narratives and counter-narratives.
The sub-text of the concerns appeared to be that we could not be trusted to submit work for publication from the special study module that did not declare assumptions, premises, and subjectivities. Our experiences echoed some discussed by Staller who encouraged social science and humanities researchers to be aware of ‘taken-for-granted privileged methodology, which is grounded in an objectivist epistemology’ and to realise that ‘the gatekeepers to academic success … differed in their tolerance for the mode of qualitative inquiry’ (Staller 2013: 407, 399). The ethics committee’s response and assertion of understandings of research framed in a particular way did not indicate tolerance for epistemic communities that were perhaps less well known or understood, nor an epistemic curiosity as to what they might be able to contribute.
There is an irony to this in that the guidelines for Ethics in Health Research issued by South Africa’s Department of Health - and accessible from the ethics committee website - has a chapter on qualitative research methods (Department of Health 2015). In the chapter, reference is made to ‘perceptions [that] exist that the “‘medical model” of ethics review prevails and that it is inappropriately applied to research that may use qualitative research methodologies’ (Department of Health 2015: 73). The guideline continues by noting that ‘As research becomes more trans disciplinary, proposals increasingly include mixed methodologies, including qualitative methodologies’, as such it acknowledges that ‘It is important that [ethics committees] review different methodologies appropriately and in accordance with accepted methodological standards of different research and academic disciplines’. In conclusion, the guidelines note that ‘qualitative research is inherently dynamic and may be based on assumptions that are different from those that inform quantitative research’ (Department of Health 2015: 73-75).
Methodologies, Creation, and the ‘Risk’ of Sharing Findings
The final concern raised by the ethics committee again had little to do with ethics but in our view had a lot to do with the policing of acceptable ways of doing research and, by extension, the favouring of methodologies linked to specific disciplinary practices, without any evident disciplinary curiosity or perhaps humility. The committee’s letter indicated that while the proposal explained what Photovoice was, it did not explain why it formed part of the most appropriate research design. This observation was followed by a statement that the purposes of pedagogy and research were mutually exclusive and it was evident that we had repeatedly blurred these lines.
The ethics committee, we were informed, was not sure why photos were desirable and, if they were, whether the requirements we had in place for permissions to be obtained from potential subjects were feasible. The letter confidently stated that obtaining permission from subjects would alter the nature of the project resulting in staged photos as opposed to ‘spontaneous snapshots’ reflecting ‘ordinary’ behaviour on campus, and again affirmed that images depicting relationships of power could only be based on perceptions. The paragraph on photos concluded by indicating that while the committee could see the usefulness of the student’s photos as a basis for discussions amongst students and convenors, it did not understand the reason for the proposed exhibition. Rather, the ethics committee felt that the exhibition could potentially have undesirable, unintended consequences.
There was no evidence in the ethics committee’s response that the concerns raised about Photovoice and the subsequent planned exhibition were based on engagement with, or knowledge of, the literature we had included in the proposal, other literature on Photovoice, or knowledge drawn from specific examples of other Photovoice projects. Instead, the comments seemed to be based on an undeclared policing of research based on familiar research designs that were understood to be appropriate and the rejection of an unknown, and therefore inappropriate, research method. The committee gave no explanation of any potential ethical issues linked to Photovoice that were of concern; rather notions of desirability (or lack of desirability) were evoked but not explained.
The images to be created during the special study module, where and how they would be discussed, and how participants chose to share findings were also subjected to a scrutiny that was not conventionally linked to the roles of the ethics committee. In the ethics committee’s statement, the Photovoice process was understood to have a specific ‘nature’, and suppositions about the types of images that were suitable (snapshots not posed photos) were framed and understood in relation to their ‘usefulness’, not their potential as visual sources, ‘data’, or symbolic representations of lived experiences. The committee did not appear to understand that the sharing of selected images and exhibiting of the work produced by participants was part of a wider social intervention yet it was clear that an exhibition that might surface narratives of exclusion was risky and ‘undesirable’.
We countered these points by referring to literature in the proposal that explained the ‘usefulness’ of photos to address any number of subjects. We argued that images provide a starting point for conversations that allow different interpretations to be discussed. Furthermore, the images were no more or less worthwhile or valuable as ways of interpreting, understanding, or representing the topics under discussion and were central to the methodology itself. We assured the committee that the changing nature and contexts of photos, the intentions behind images, different ways of framing and staging photos, and differing analysis of images (in other words visual literacy) would form part of the photography workshop and the weekly thematic feedback sessions. We also explicitly identified the subjective nature of photographs, which, even if taken spontaneously, only ever capture one moment in time, and reiterated that in a Photovoice project the photos were central to the process.
In responding to the comments about the exhibition we maintained that the exhibition was a form of reporting on the research results to an interested constituency in a format that was acceptable and relevant to that constituency and to the methodology being used (Figure 3). As to the ‘undesirable’, ‘unintended’ consequences of an exhibition, we respectfully declared the comment too vague to be engaged with and asked for clarity on what the potential ‘unintended’ consequences might be, how they would be ‘undesirable’ (and to whom), and who would judge and determine desirability? We never received responses to these queries.
The ethics committee’s insistence that a chosen methodology should be ‘the most appropriate’ did not come with any information on how, other than the obvious requirement that ethical concerns relating to human participants are addressed, appropriateness is determined, defined, or judged. In our reply we reasoned that Photovoice was an accepted research methodology that, while unusual in the Faculty, was not unprecedented having already formed the basis of other academic work on the campus, which had been referenced in the original proposal. Nonetheless, we provided additional references to Photovoice projects that had been used in other health sciences research to document social inequality and inequity (Bredesen and Stevens 2013; London et al. 2012; Sanon et al. 2014). We asserted that the design was one that the convenors were most interested in pursuing and most appropriate in terms of building on, and contributing to, similar projects on campus. We also affirmed explicitly that ‘research that is engaged with both exploring pedagogy and analysing the data from a certain type of methodology are by requirement inter-related’.
Linked to the ethics committee’s concern with ‘desirability’ were notions of ‘risk’ and an underlying perception of risk not necessarily linked to research participants, but in our view intended to maintain a certain status quo at the institution. What was suggested were risks that were presupposed to be harmful and not risks that might potentially be helpful. Ethics committees should be concerned with ensuring that participants are exposed to as little risk as possible, but as Hammersley has argued, there is ‘a matter of degree and appropriateness’ that is required which recognises that humanities and ‘social research, generally speaking, involves nothing like the same degree of intervention by researchers or the same danger of serious harm’ (Hammersley 2010: para. 1.10). Haggerty’s discussion of decisions linked to risk and harm recognise that while harms are possible and can occur, the pronouncements of ethics committees are ‘more akin to a subjective imagining of potential scenarios unconstrained by empirical evidence’, and as such, ‘decisions about future potentialities are much more subjective and ad hoc than one might have concluded from the discourse of “risk” used in [ethics committee policies]’ (Haggerty 2004: 402,403).
We responded to the ethics committee’s concern about the apparent risk to students by referring both to the current climate on campus (that had led to the Faculty Assembly) and to previous research dating back almost 20 years that had been challenging perceptions that all was well at the university in relation to the politics of identities (de Gruchy and Lewin 2001; Steyn and Van Zyl 2001; Erasmus and De Wet 2003). We argued that discovering that one’s perceptions were wrong could be helpful or harmful, but that being ethically responsible and raising them in a protocol did not exclude unstated outcomes that could be helpful – such as recognising how mechanisms of power and privilege work and being able to analyse and understand them.
The evocation of perception and associated bias contrasted to ‘facts’ and ‘objectivity’, revealed a paradox. The committee maintained that perceptions of discrimination and exclusion could be inherently biased, but did not recognise that perceptions of a lack of discrimination and assumptions of inclusiveness could also be inherently biased. We maintained that perceptions that a sense of exclusion or discrimination are not the reality against which people experience their lives on campus was a similarly biased assumption. While the ethics committee seemed to be concerned about students whose perceptions could change, they did not seem concerned about students whose perceptions and experiences were being negated or denied. Various members of the university community had been raising issues of inherent biases linked to ‘race’, gender, sexual orientation, class, and ability, but this broader context did not seem to feature in the ethics committee’s deliberations. What would happen if a student thought there was no discrimination on campus and then realised there was, or if a student who experienced discrimination realised that others shared similar forms of discrimination, or that there were forms of discrimination they had not been aware of? What would the potential results be if a student’s perception that the discrimination they were experiencing changed when they realised it was not imagined but shared, and their agency and capacity for changing and contributing to change were not paternalistically denied? What might change if such examples of institutional bias were revealed and addressed? Perhaps nothing, perhaps personal discomfort, perhaps significant improvement, perhaps something akin to empowerment?
Three weeks after making the initial submission and replying to the committee’s concerns, we received a one-page letter thanking us for the thoughtful and considered responses and indicating that we now had ethics approval and could proceed with the special study module and associated research. Long after this permission had been granted, a participant who self-identified as black, queer, and gender-nonconforming, provided an answer to what might happen if perceptions changed. It was a response echoed by other participants. They wrote:
The SSM was also key in my acknowledging the role that the Faculty’s hegemonies have played in my experience as a student at the University of Cape Town and how this had led me to a relinquishing of my identity in order to try to survive the daily struggle of living up to a standard that does not reflect who I am. (The liberation of another person acknowledging your struggles and proving that you are not “crazy” for wanting to take a stand for things that other people do not see as a problem when you see how it hurts and impacts you is an experience that can make a huge difference in how you see life). This SSM therefore started me off on a process of healing, of lessened internalized inadequacy, Afrophobia, homophobia, Europhobia, and other negative feelings and allowed me the space to share my experiences and relate them to literature.
FROM EPISTEMIC VIOLENCE TO EPISTEMIC GENEROSITY? LESSONS, CONSIDERATIONS, AND CONCLUSIONS
For us, this participant’s comments indicate that, through the special study module, some of the mandates of feminist research that we ascribe to were met. Some of the mandates of feminist research also overlap with the non-instrumental value of MHH identified by Macnaughton (2000:25) and described above, particularly supporting a ‘counter culture’ (Figure 4). Creating a ‘counter culture’ in a hostile environment however, comes at an emotional cost and potentially a professional one. As gratifying as creating feminist inspired spaces and ‘counter cultures’ are, the ancestors of Women’s, Gender and Feminist Studies, MHH, and other counter-hegemonic academic spaces, continue to issue warnings about the battles to create, develop, and sustain new fields and methods of research.
In personal conversations with more established academics in the Faculty who have been incorporating non-hegemonic epistemologies in their teaching and research for years, we have been advised to ‘just survive the space’, focus on our sabbaticals as opportunities to regroup, or find research projects to work on in our spare time to help keep us motivated. This advice comes even as sabbaticals are reframed as a privilege for certain types of academic staff only; and as increasing demands on time are made in the face of on-going austerity in Higher Education (Africa Check 2016; Muller 2017; Universities South Africa 2016, 2018). We have heard too from academics who experienced a lifetime of struggle to get MHH introduced into health sciences faculties only to see it undone six months after their retirement.
Amongst the personal costs are the emotional labour required to adapt to – or challenge – hegemonic, exclusionary ways of being an academic; the constant microaggressions (Nadal et al. 2011; Sue et al. 2007) linked to gender and other identities (despite the privileges afforded to us due to our being identified as ‘white’), and the impact constantly being ‘on guard’ has on our emotional, mental, and physical well-being. Monaghan et al. discuss the ‘emotional vicissitudes’ linked to the ‘rationalised’ ethics process described in their work and remind us that ‘social researchers, like many workers in advanced capitalist societies, face emotional challenges and engage in ‘emotional labour’ or active management of their feelings in the workplace’ (Monaghan et al. 2013: 72).
Hammersley, referring specifically to the UK, warns that the results of ethical creep ‘alongside the growing difficulties that social scientists face in gaining access to people and places in order to collect data, threatens the future existence of good quality social research in many fields’ (Hammersley 2010: para 1.10). Our interaction with the ethics committee shows the consequences of ethical ‘creep’ in MHH projects: policing of MHH research, and policing of MHH-related teaching. In both instances, it is not only the administrative and bureaucratic effort that challenges interdisciplinary academic endeavours. Our experience shows how deeply embedded ethics committees can be in the biomedical culture of health sciences faculties (or how deeply embedded biomedical culture is in ethics committees) - through their members, their chairs, their understanding of research and ‘risk’, and, ultimately, their administrative and bureaucratic procedures, which are inherently hierarchical and reproduce unequal power relations between ethics committees and researchers applying for approval (Monaghan et al. 2013: 71). This ensures that research that goes against the ‘biomedical norm’, that challenges the status quo, is difficult to do at least, and impossible to do at worst. Thus, the primacy of biomedical paradigms supports ethics creep, and ethics creep supports the primacy of biomedical paradigms. One of the tasks of MHH is to critically interrogate and challenge the primacy of biomedical understandings in the health sciences. Ethics review processes embedded in biomedical frameworks, however, stymie such challenges, and thus debilitate academics, researchers and students who want to ‘do’ MHH. In considering what some of the effects of MHH might be, Pattison suggested that: ‘Equal space and respect would be accorded to practitioners, performers, theorists, and analysts from the various relevant arts, humanities, and medical practices and disciplines’ (Pattison 2003: 34). Epistemic generosity in (and beyond) academic spaces would go a long way towards realising this ideal.
Epistemic generosity recognises the unique skills, methodologies, and understandings that different disciplines or groups of people possess without engaging in competitive assertions of superiority or ‘truth’ aimed at judging that which is new or unknown. By doing so, it recognises that there are general commonalities that can be commented on and rigorously engaged with (processes, logic, flow of argument, use of substantiating evidence, development of arguments) while also recognising the limits of disciplinary specificity. Epistemic generosity requires a sufficiently self-reflexive, critical engagement with the ‘historiographies’, methodologies, and practices of one’s ‘home’ disciplines to understand both their limitations and their untapped potential. This form of epistemic generosity also requires epistemic humility that recognises when to approach others with different knowledge/s for assistance and additional insight in the interests of mutual growth and benefit for all concerned. In doing this, epistemic generosity requires an acknowledgement that specialist knowledge may also come with specialist ignorance of areas outside of our usual purview.
It is a rigorous generosity that contributes intellectually what it can from specific disciplinary perspectives while remaining respectfully open to learning from other disciplinary perspectives. As such, epistemic generosity is characterised by epistemic curiosity for one’s own disciplinary space and the disciplinary spaces of others.
Along with epistemic generosity comes epistemic reciprocity – a commitment to learning from others and contributing knowledge in return, in a spirit of collaboration. Configured in a collaborative (not competitive or combative) form of work, epistemic generosity is rooted in an understanding that the sum of the parts, may constitute a whole that is greater than the constituent parts and may therefore change those parts. At a basic level, within ethics committees, epistemic generosity may be achieved by doing something as simple as sending MHH or other interdisciplinary proposals to other faculties for review and/or accepting the decisions of other faculty’s review boards. Alternatively, ad hoc members with knowledge of other faculties, disciplines, or methodologies can be recruited onto the committee to provide feedback on methodological or pedagogical practices that permanent committee members may not be familiar with. Trans- or interdisciplinary proposals that straddle disciplines and/or faculties require different combinations of knowledge. Currently, in our faculty, an anonymous reviewer can reject a proposal with little explanation or substantiation and the onus is on the researchers to explain and justify their choices. In the spirit of epistemic reciprocity and shared learning, efforts should be made to ensure that the process is dialogical and if necessary, can be mediated through meaningful discussions.
Reflecting on 20 years of experience in academia linked to Women’s, Gender and Feminist Studies, Cardoso (2018), in her review of Pereira’s book, indicates that the points of intersection between the personal, the socio-political, the economic, the systemic, and the personal as political have been acutely felt. Many of the characteristics of ‘the toxic climate within the ossification of the performative university’ (Cardoso 2018: 2) seem exacerbated in a space of rigid epistemic hierarchy and epistemic violence. Partaking in the constant battles at these points of intersection distract from the work of creating and imagining how feminist, trans- and interdisciplinary MHH-related praxis could evolve, thereby potentially hampering innovation and threatening stagnation. Those of us trying to establish new fields would do well to try and learn from experiences mirrored elsewhere. In doing so we could critically reflect on depressing similarities and energising opportunities to do things differently. It remains to be seen if the move away from epistemic violence to epistemic humility, conversation, and generosity is possible in our context.
ACKNOWLEDGEMENTS
We would like to thank the students who took part in the special study module for their enthusiasm and contributions. We would specifically like to acknowledge Sarah Crawford-Browne, our colleague who co-convened the special study module with us. Thanks are also due to the readers, reviewers, and editors for their helpful comments and assistance. We received funding from UCT’s FRC Development Award to assist in writing this article.
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For more on the MOOC see the FutureLearn website at www.futurelearn.com/courses/medicine-and-the-arts. (Accessed March 2018).
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Medical and Health Humanities Africa at https://medicalandhealthhumanitiesafrica.wordpress.com and Malawi Medical Humanities Network at https://malawimedhumsnetwork.wordpress.com (Accessed March 2018).
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For more details of MHH in the Faculty of Health Sciences’ curricula see Tsampiras, C. (forthcoming December 2018). Walking up hills, through history, and in-between disciplines: MHH and health sciences education at the tip of Africa. Medical Humanities Journal.
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The #RhodesMustFall (#RMF) movement began in March 2015 and was initially directed against the statue of arch imperialist Cecil John Rhodes on UCT’s upper campus and was concerned more broadly with racism and patriarchy on campus. For more on the movement see the #RMF social media page at www.facebook.com/RhodesMustFall/. The UCT Rhodes Must Fall Mission Statement is available on the social media page and also at Johannesburg Workshop in Theory and Criticism website at www.jwtc.org.za/resources/docs/salon-volume-9/RMF_Combined.pdf (accessed April 2018). The #Fees Must Fall (#FMF) movement was a larger country-wide student-led protest movement fighting for free higher education and the decolonising of university curricula and institutional cultures. The movement gained momentum in late 2015 and students shut down campuses across the country in 2016. Student protests were met with the militarisation of campuses and the presence of police and private security. For more on the national #FMF movement see the social media page www.facebook.com/NationalFMF, for the UCT movement see www.facebook.com/uctfeesmustfall2017 (accessed April 2018). For academic work on #FMF see the special issues of Agenda. (2017). Feminisms and women’s resistance within contemporary African student movements. Agenda, 31 and Booysen, S (ed). (2016). Fees Must Fall: Student Revolt, Decolonisation and Governance in South Africa. Johannesburg, Wits University Press.
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The quotes from participants used in this article are derived from the following sources: transcripts of focus groups done with participants; voluntary and required comments and reflections submitted by participants, explanations of photos provided by participants, and anonymous written course evaluations.
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CHED website at www.ched.uct.ac.za/ched/chedmission. (Accessed April 2018).
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See Kessi, S. and Cornell, J. (2015). Coming to UUN: Black students, transformation and discourses of race. Journal of Student Affairs in Africa, 3(2), 1-16; and Cornell, J. and Kessi, S. (2017). Black students’ experiences of transformation at a previously “white only” South African university: A photovoice study’, Ethnic and Racial Studies, 40(11), 1882-1899.