Original field research methodology

In summer 2018, Anna Tupetz and Michel Landry conducted a mixed-method study that explored the experiences of individuals and their families who sustained a scarf injury, received health and rehabilitation care, and were discharged back to their home and community. Landry is a global health and policy researcher with several years of service and educational collaboration with a local rehabilitation centre; Anna Tupetz is a physical therapist who was a global health graduate student at the time of the study. The research team visited a total of 12 families, spending between 2 hours and 4 hours with each of them to permit ample time to establish rapport and leave enough time for questions and concerns after the interviews.

Following data collection, Tupetz held consultation sessions with Bangladeshi health professionals and service users located at a rehabilitation facility, which added significant interpretive value around the meaning of disability for the individuals who sustained scarf injuries. At the time of writing this interdisciplinary reflection essay, another paper with the full scientific results of the original study is under review elsewhere.

A conversation on disability studies, global health and narrative data: an international, collaborative approach

Tupetz published a commentary describing scarf injuries and calling out public health approaches that, ‘aim(ing) for cost-effective interventions that have the highest impact on mortality reduction’, prioritise men’s survival as the population at higher risk for fatal injuries overall (Tupetz et al. 2021). These data-driven, cost-motivated approaches have the effect of deprioritising women’s health, and overlooking quality of life among disabled survivors of injury. Tupetz’s dissatisfaction with these outcomes prompted a conversation with humanities and critical disability studies scholars, leading to the cross-disciplinary methodology employed in this article. By incorporating the humanities, global health can approach disability holistically, exploring not merely the fact of injury and prospects of recovery, but the full human experience of life with disability, as well as the broader structural forces shaping those experiences. We, therefore, assert that the developing subfield of global health humanities, which this special issue explores, should include purposeful integration of a critical disability studies methodology, which we introduce here.

While global health research has tended to view disability primarily from a medical and rehabilitative perspective, critical disability studies enable a deeper analysis of how cultures make embodied differences meaningful. An academic field born in concert with burgeoning disability civil rights activism in the USA and UK in the 1980s, the foundational contribution of disability studies was ‘the social model of disability’, shifting the focus to inaccessible environments rather than individual impairments (Shakespeare and Watson 1997). Several decades of scholarship later, engaging disciplines across the social sciences and the humanities, critical disability studies today offers a range of complex political, relational and biocultural models of disability, and grapples with both the harms and the benefits of medicine (Clare 2017; Davis and Morris 2007; Kafer 2013). As a methodology—as opposed to a ‘subject’ of study—critical disability studies provide a flexible framework for scrutinising the social norms that govern and organise bodies, engaging intersectional analysis of race, gender, sexuality and class (Minich 2016). In our interdisciplinary discussions of scarf injuries in Bangladesh, the introduction of a critical disability studies methodology opened up questions not only about how accessible homes, roads, education and employment systems could improve these women’s lives but also about the intersecting economic and cultural circumstances that gave rise to the injuries in the first place (ie, histories of exploitation and colonisation in Bangladesh producing intergenerational poverty; the affordability of the autorickshaw due to cheap labour and manufacturing in China; norms of dress for women in Bangladesh vs in China; and so on).

This article reflects a cross-disciplinary conversation about scarf injuries, including the perspectives of Bangladeshi physiotherapists Mohsina Sultana and Kazi Imdadul Hoque, who initially discovered the pattern of scarf injuries; Tupetz and Landry introduced previously; and Tupetz’s colleagues at Duke University working in humanities-based critical disability studies. Kearsley Stewart a medical anthropologist, and professor of the practice at the Duke Global Health Institute, who had advised Tupetz on the qualitative research methods of her study, introduced Tupetz to Marion Quirici, director of a cross-disciplinary faculty working group in disability studies. Discussing the Bangladeshi scarf injuries in this multidisciplinary venue illuminated the shortcomings of each of our fields. Physical therapists aiming to rehabilitate individuals are not equipped through their clinical training to confront larger societal obstacles, such as the lack of affordable and accessible housing and transportation in Bangladesh, which present the greatest barriers to re-integration. In addition, the European and American-centric origins of disability studies as a field pose a significant problem for global health researchers: although 80% of people with disability worldwide live in what is called the ‘developing’ world (United Nations, Department of Economic and Social Affairs Disability), scholarship is overwhelmingly concentrated in, and concerned with, the USA, the UK, Canada and Australia. Coming together as a cross-disciplinary team, we learnt something that, perhaps, all cross-disciplinary teams learn: that before we can find answers for complex problems, we must first learn to ask better questions. What is a ‘discipline’ if not a framework for crafting research questions (Comer 2015)? This paper will therefore explore, through consideration of scarf injuries in Bangladesh, the new framework for questions that a critical disability studies methodology offers global health researchers.

Integrating a critical disability studies approach raised questions in four categories: access, structural disparities, cultural norms and avenues of empowerment.

1. Access. Starting with a simple social-model perspective, the first question we posed was, What are the social and structural barriers impacting quality of life for survivors of the scarf injury? This inquiry begins with a consideration of survivors’ needs. Disability studies scholars and activists insist that there is nothing ‘special’ about disabled people’s needs because disabled people need the same things as all humans: safety, clean water, nutrition, housing, healthcare, transportation, information, education, recreation, occupation, community and acceptance. In environments built for the non-disabled, disabled people are denied access to these basic human rights. For people with SCI, a wheelchair can help facilitate access to almost anything if the infrastructure is accessible. What would a survivor’s life look like if she had a power wheelchair, an accessible home, and accessible transportation to an accessible school and community? These questions help us see how an inaccessible environment can be more disabling than the injury itself. These questions also enable us to view infrastructure and design as public health issues.

2. Structural disparities. Delving deeper into critical disability studies, especially Nirmala Erevelles’s historical-material approach (Erevelles 2011), we recognised that impairments themselves often have origins in social circumstances. Our next set of questions asks, What political and economic circumstances created the conditions for the injuries in the first place? This is an extension of the infrastructure question, but with attention to the history, laws and international relations that operate invisibly behind the life of the street. What affordable transportation options are available in the places where these injuries occur? Why is this specific type of rickshaw, often the most convenient option, also so dangerous? Why was the exposure of the engine shaft not considered a fatal design flaw? How does global capitalism reinforce the low cost of labour and manufacturing in China, and how does this perpetuate human rights disparities? What would it take to maintain smooth surfaces on roads in rural Bangladesh as a safety precaution? These questions carry the conversation beyond individual choices and responsibilities, to broader forms of structural violence. These questions also facilitate a recognition that health disparities—including the incidence of disability—disproportionately impact people with the least amount of wealth and power. While the argument may arise that Bangladesh has extremely scarce resources and cannot be expected to meet Western standards of public safety and human rights, we should question the circumstances of that scarcity rather than accepting scarcity as natural or the way things have to be. Contextualising each woman’s experiences within a long history of colonisation, extraction and exploitation forces acknowledgement that human uses and abuses of power created these conditions, and the international community can and should be held accountable.

3. Cultural norms. Critical disability studies scholarship also emphasises intersectionality, reminding us that we cannot analyse the experience of disability as separate from culturally specific experiences of race, class, gender and religion, all of which operate simultaneously (Clare 2017; Erevelles 2011; Piepzna-Samarasinha 2018). We next asked, How do cultural norms of gender, class and religion shape a disabled woman’s prospects? What is the traditional role of the woman within the family or within society, and how does disability complicate that role? To what extent is disability represented and visible within Bangladeshi culture? Familiarity with disability diminishes its stigma and increases acceptance. But in inaccessible environments where people with disabilities are prevented from participating equally, disability remains outside the realm of the familiar. What are the beliefs about disability in Bangladeshi culture? Are the cultural narratives of injury and disability always tragic ones? What specifically are the beliefs and practices regarding women with disabilities? What prospects does a disabled woman have, and how are these prospects contingent on social class?

4. Avenues of empowerment. The principles of disability justice call for leadership of the most impacted, cross-movement organising, collective access and collective liberation (Berne 2015). These principles led us to raise questions about what hope there is for change, and the role women with scarf injuries might have to play. We asked, Is there potential for the women to discover disability community, culture, and collective liberation? Do survivors have opportunities to find and connect with each other? If not, what would it take to create these opportunities? If the survivors could connect, could they take part in building disability culture? Could they agitate for improved access? Could coalition-building be a way of accessing community and occupation, leading to broad changes that would improve the quality of life for all people with disability in Bangladesh?

Our process of articulating these questions brought discomfort. Quirici, as the critical disability studies scholar on the team, grappled with her status as an American, situated within a broad and diverse disability community preparing to mark the thirtieth anniversary of The Americans with Disabilities Act (ADA) (2021). While the ADA remains problematic in many ways, it nevertheless enables disabled people in the USA to enjoy many freedoms not available to the women in the study (Americans with Disabilities Act (ADA) 2021). Is it possible from this vantage point to imagine a future for these women that is not modelled on the civil rights struggles of disabled Americans? Through dialoguing with the global health researchers on the team, Quirici confronted the limitations of disability studies scholarship situated in the USA, the UK and commonwealth nations. Do the accessibility ideals and emancipatory frameworks of the American disability rights movement (DRM) become forms of cultural hegemony within majority world1 contexts? We use the term ‘majority world’ in keeping with the example of Bangladeshi photojournalist Shahidul Alam, to reject the Western-centric language of ‘developing nations’ which hides histories of oppression, extraction and continuing exploitation (Alam 2019). Landry, reflecting on his own career of global health rehabilitation practice in majority world nations, questioned whether the disability studies framework is an imposition, a form of white saviorism being mapped onto a culture with fewer resources and different norms of gender and religion. The question prompted the response that, in the first place, a country’s relative poverty is not a neutral or natural circumstance to be taken for granted, but a direct consequence of histories of extraction and exploitation that need to be openly named and interrogated. The question also invited a review of what ‘disability studies’ has been and what it has the potential to be. Is it a Western, hegemonic discourse, or a framework for emancipation? We contended with what Chris Bell has termed ‘white disability studies’—scholarship that prioritises white cultures and bodies, or erases the significance of racism by presenting ableism as the ‘real’ culprit (Bell 2006)—and made an explicit allegiance to disability studies scholarship that insists on intersectionality. Returning to the DRM from which the field of critical disability studies emerged, Quirici overviewed its indebtedness to the black power, women’s liberation and gay rights movements, to argue that there is nothing inherently ‘white’ or ‘American’ about the concept of freedom; quite the opposite when one considers that the founders of this nation owned slaves, enacted genocide on indigenous populations, classified women as property and exploited the working class. Rejecting the idea that concepts of ‘freedom’ and ‘progress’ are somehow uniquely American, we then called into question the assumption that women living in relative disempowerment do not want to improve their circumstances because of their culture and traditions.

Ultimately, while we do not wish to argue that the freedoms envisioned by disability activists in the USA could be won elsewhere in the same way, without critical attention to differences of culture, religion, gender norms, politics and government, we do want to begin the work of identifying culturally specific pathways of liberation. Disability studies as a field is only recently coming to terms with its whiteness and the relative privilege that scholarship celebrating disability reflects (Bell 2006). Nirmala Erevelles argues that by getting swept up in the transgressive potential of disability as an identity, the field loses sight of the ‘violence of social/economic conditions of capitalism’ (Erevelles 2011). We take cues from Erevelles’s historical-materialist approach, as well as Anna Mollow’s contention that in different cultures we will find different sets of priorities (Mollow 2013). Tupetz, sharing her research in Bangladesh with the Disability and Access Initiative at Duke, showed a picture of her hand with a henna tattoo, being applied by one of the young women holding the applicator in her mouth. Mehndi, known as henna in Western cultures, is the art of temporary skin decorations using the dye derived from henna plants. In a tradition dating back centuries, henna is applied to the hands to pray for happiness and good luck (Jo and Yoo 2004) and worn for special events such as weddings (Black 2011). The picture of the young woman engaging the researcher in her cultural traditions, and the creativity and artistry of her method, was arresting. Quirici could only describe the image as one of resilience—resilience being a word she resisted in most contexts because too often, calls for resilience put the onus on disabled people to withstand and ‘rise above’ cultures of inaccessibility. But confronted with this captivating, graceful image, Quirici felt that this resilience was something to aspire to. There was so much power in this moment of human connection: for the researcher, for the young woman, for her family, and for others who may find themselves in a similar situation.

Bringing humanities-focused methods and content into global health research, practice and policy

As we conversed across our disciplines, we increasingly recognised our framing question: can our disciplines make progress toward decolonising global health and globalising disability studies at the same time? Stewart asked: Is it possible to mobilise ‘the voice of the patient’ in a way that amplifies—rather than appropriates—the stories of disabled women in majority world nations? And finally, how does the emerging field of global health humanities help move these efforts forward?

Reflecting on the results of the original 2018 qualitative study, in which Tupetz had interviewed 12 survivors of scarf injury, our cross-disciplinary team first grappled with questions of methodology. We wondered, how do we elevate the results of qualitative research to the level of systems change? How do we keep these individual stories in the foreground, while also linking them directly to the social and economic structures that put these young women in harm’s way in the first place? Furthermore, how do we co-facilitate, rather than ‘give voice to,’ these individual narratives when the fields of global and public health engage more readily with quantitative population-level data than with qualitative, experiential data (Ashby 2011)? And finally, how does a global health writing group situated in a privileged institution in the USA, at a moment when the movement to decolonise global health is coming into focus, equitably collaborate with the rehabilitation practitioners for whom the conduct of externally sponsored research may itself be an extra burden and therefore an obstacle to improved care for their patients?

Mulling over these complex conundrums, we discovered our only way forward: intentionally foreground the humanities as the lingua franca of our collaborations, and specifically through narrative. Why advocate for the inclusion of narratives and narrative analysis in global health, and what new insights and actionable evidence would it offer global health? Narrative is underused in global health research and practice. When narrative analysis does appear in global health, it is most often found in global health policy literature (Ney 2012; Ngoasong 2009), or in a simplistic format such as invoking the ‘voice’ of an individual to illustrate population-level statistics. For example, one of the best-selling introductory global health textbooks introduces the global HIV/AIDS pandemic through the narrative of ‘Getachew, a 20-year-old Ethiopian with HIV’ (Skolnik 2019); yet we are given only the barest of demographic information before moving on to population-level metrics. Similarly, the story arc of a medical or global health approach to traumatic injury is typically hyper-focused on the individual injury itself while limiting its end point to either cure or rehabilitation (Dickson et al. 2019; Sharwood et al. 2020).

We argue that citing population-level metrics of a global health challenge is necessary but not sufficient. What is missing is a method for expanding the medical and global health story arc to connect the lived experience of an individual injury with the structural inequities that established the conditions for the injury. But how do ‘voices’ speak to ‘structure’? Through narrative. For this essay, we define narrative as a conversational recounting of a personally experienced story as told to a listener (Polkinghorne 1995). Going beyond the use of an individual ‘voice’ coupled with a few demographic data points to elicit and analyse an individual’s complete illness narrative, as they define and describe it, is essential for developing locally relevant, meaningful and sustainable community interventions, programmes and country-level policies. Voices and individual behaviours are embedded in social, cultural and political contexts; therefore, it is critical to first listen to how individuals narrate and make sense of their own illness experiences and then to conduct narrative analysis that goes beyond merely searching for generalisable themes to exploring specific narrative aspects of the story, such as narrative arc and key characters (Greenhalgh 2016) or metaphor (Kleinman 1989). This will lead to a more complex and nuanced understanding of that lived experience which can then better inform global health practice, programming and policy.

We then searched each of our own disciplines further for nascent (or central) humanities ideas, methods and theories, and discovered that the humanities provided a unifying approach for our interdisciplinary collaboration: look first for the human story. In fact, what drew us together as a writing group was the realisation that our individual disciplines were not sufficient to grasp the complex scope of these young women’s experiences. We quickly realised that we could not meaningfully work together towards ideas to inform practice and policy until we all, and in a nuanced fashion, understood the different implications of the scarf injury for each of these young women. Beginning with the person means we can trace connections between individual experience and the more difficult-to-see systems and structures, such as politics, economics and culture, that directly influence the experience. With a deeper understanding of these issues and contradictions—gained through qualitative interviewing, home visits and ethnographic observations—we can link the local to the global to see the structural processes that shape experience. Understanding the complex factors that placed these young women at risk, we seek not only strategies to prevent future scarf injuries, but also to identify potential methods of empowerment for the women who survive with scarf injury today.

Just as global perspectives are urgently needed in disability studies, disability studies perspectives are urgently needed in global health. Only through sustained and intentional collaboration can we address the shortcomings of both fields. By engaging in disability studies, global health can begin to entertain alternatives to the restrictive medical model of disability, which defines disability as a functional limitation residing in the body of the individual. Below, we share the stories of three of the women who participated in Tupetz’s qualitative study, and the specific responses these stories elicited from our cross-disciplinary team. To protect the women’s privacy, the names have been replaced with pseudonyms and all identifiable information has been removed.

Interdisciplinarity, the movement to decolonise global health and the humanities

In addition to our interdisciplinary conversations around the rehabilitation and health policy implications of stories like Nazia’s and Anusheh’s, bringing the humanities into our conversations also pushed us to engage with the emerging ideas of the Decolonize Global Health movement, and laid bare our need to realign our relationship with our colleagues globally (Byatnal and Mihara 2020). What is/could be the role of the humanities in the nascent movement to decolonise global health as a discipline, a collaborative research partnership model, and a training ground, and how are the humanities reflected in our project? How do the colonial past and the neoliberal/neocolonial present shape both this project’s professional research partnerships and the relationship between the student trainee and the community collaborators who invited her into their homes? And what are the implications of these tensions for translating these results into actions that can contribute to both the lives of the young women who shared their stories and efforts to decolonise global health itself?

Recent papers argue that global health must begin to address its own implicit biases by confronting both its colonial legacy and the enduring impact of structural racism on the discipline and practice of global health. Calls for action include: acknowledging systems of privilege and practising critical allyship to transform those systems (Nixon 2019); increasing equitable recognition of authorship (Hedt-Gauthier et al. 2019), addressing unfair resource allocation in research partnerships (Boum Ii et al. 2018); improving reciprocity by addressing the disproportionate burden high-income country trainees often impose on majority world settings (Pai 2020) and interrogating the politics of knowledge production in global health research and publishing (Abimbola 2019). More directly related to the role of humanities in global health, Eichbaum et al extend these efforts to decolonise global health research and practice to include actions to decolonise global health education by realigning storylines and narratives from ‘deficits of resource-limited settings (to) implicit strengths and assets’ (Eichbaum et al. 2020). We argue that humanities methods, content and pedagogies are essential to these efforts to decolonise global health practice, research and training.

The value of a fresh approach to collaboration, mediated through our humanities approach to look first for the human story, was clearly identified by our Bangladeshi colleagues in our postresearch conversations. For Hoque and Sultana, our qualitative study design provoked a new conversation that opened the door for their participation in interdisciplinary collaboration. According to Hoque and Sultana, a standard quantitative research design alone would have not revealed the depth of their patients’ and caregivers’ struggles, as every case they treat is unique. Hoque and Sultana attribute to our collaborative discussions an essential opportunity to learn new and different perspectives that go far beyond physical functioning, into the realm of contextual factors, such as human rights and basic education access. Hoque and Sultana believe our collaborative work will have a strong impact on SCI research in Bangladesh: it can serve as an entry point for other rehabilitation professionals in Bangladesh to become aware of these issues, trigger self-reflection on the inadequacies of the way they conduct their rehabilitation work and ignite a desire to engage in such conversations themselves. The role of qualitative research, in particular, has proven to be exceptionally important for both Hoque and Sultana, as it not only allowed them a deeper understanding of ‘what we feel, what they feel, what other people feel’ (Hoque) it also allowed the research team in Bangladesh, in their role as practitioners, to gain a deeper understanding of the emergency care and challenges people suffering such injury face in accessing the care they need. According to Sultana, this information would not have become that evident to her, if she had only access to quantitative data. Our approach to this essay, informed by a historical-materialist critical disability studies framework (Erevelles 2011) and applying narrative and humanities methodologies to producing qualitative global health data, makes visible the many layers of each story, from the individual to the cultural, the structural and the global economic system. More importantly, it underlines our responsibilities to each other, and the urgency of collective struggle. Under current conditions of global inequality, such collective action is unlikely until we acknowledge that Nazia’s story, and Anusheh and Fatima’s stories, implicate all of us.