Acceptable Thresholds: Learning From Critical Disability Methodology to Inform Embodied,Qualitative Research

Introduction

The writers of this article were brought together by questions of pain.

In the spring of 2020, we were working through findings and analysis of our respective dissertations. Kathleen was researching victim impact statements given during United States gymnastics coach Larry Nassar’s sexual assault sentencing hearings, as well as additional victim interviews. Leah was analyzing participant interviews and photovoice studies to improve mobile interaction design for users with affective and/or psychiatric disabilities. Aside from being driven by qualitative research, our projects on the surface had little to do with one another. But they shared one crucial commonality: these studies were born out of our anger. Kathleen was a mother concerned with what she had noticed as some unsettling characteristics of youth athletic training. Her dissertation introduction begins with the story of a disturbing encounter with her daughter’s gymnastics coach and a lingering frustration that ultimately led her to research issues of violence, silencing, and abuse in gymnastics and other youth training programs. Leah is a bipolar person navigating a world that does not consider those with what are termed psychiatric disabilities or affective disorders, especially in built environments and technologies.

In the spring of 2020, we were also thinking quite heavily about embodiment. Writing within the global health pandemic, particularly on issues such as Kathleen’s work with abuse and Leah’s researching of affective and psychiatric disabilities, made us think about the connections between the complicated emotions we felt with our research, our relationships to our work, our bodies, and, ultimately, questions of stress and pain. Because of our heavy emotional investment and the emotionally driven motivation for beginning our studies, our research routinely held physical consequences: we wept, we went without sleep, we had upset stomachs and heightened nerves. In one case, Leah was physically triggered. We were not the ideal, impartial, and dispassionate researchers with clean protocols who are described in textbooks. We were messy and exhausted. We were burned out in a way that went beyond mental and emotional fatigue and into the physical. Sometimes, our ability to research suffered as a result.

This article explores the value and risks of emotional commitment in qualitative research methods and the corporeal consequences that can result from this commitment. To help us understand this relationship, we use the concept of “allostatic load,” or the amount of stress a body can handle, as a guiding metaphor to understand the researcher’s experience with subjectivity. Borrowed from health and medicine fields, allostatic load refers to the “wear and tear” our bodies encounter because of stress (McEwen & Seeman, 2006, p. 30). While acute stress can be a protective measure—the well-known “fight or flight” response—when it becomes sustained, stress takes its toll in the body; it affects the head and heart. Instead of focusing on stress measured by fluctuations in cortisol and catecholamines, we consider how stress informs an embodied practice of qualitative research, taking into account the thresholds and limits of the body and how these limits shape and transform data collection and analysis. Our predominant attention on embodiment has made us question practices of accessibility in the training and process of conducting such demanding work.

Too little is shared about preparing qualitative researchers to conduct personally meaningful research without sacrificing their own physical and psychological health. We endorse the importance of subjectivity in research, believing that a connection to the community being studied benefits rather than impairs the research process. However, in perhaps a controversial move, we want to investigate the tension between when physical effects of stress are necessary and needed when researching from the subject position and when they are harmful to the researcher, especially when researching sensitive and difficult topics within our own communities. To this end, we consider insights from a number of different fields, as well as our own personal experiences and positionalities as researchers grappling with personally significant research questions. In particular, we turn to critical disability studies and the experiences of disabled researchers as an important source of knowledge not only about complex embodiment (Siebers, 2008) in qualitative research and the toll that it can take on the researcher, but also to envision more equitable, more inclusive qualitative research practices that account for physical and emotional pain and stress.

We therefore approach this conflict of a metaphorical allostatic load through the lens of critical disability methodology. Stemming from a curiosity about the physicality of qualitative research, we consider stress as both a sign of humanity and a sign of risk. We begin this article with an overview of researching difficult or sensitive subjects in relation to researcher positionality and subjectivity. In this overview, we argue that qualitative researchers often encounter tension and various forms of exhaustion when they are caught between doing work that is personally meaningful to them and a sense of responsibility to continue such work in the face of vulnerability and risk. Taking time away from the work is one potential solution to protecting a researcher’s well-being, and as we will later suggest, disability theory principles such as “crip time” can help researchers re-envision their research timelines in light of their own bodily and mental thresholds. However, taking time away may not be feasible for many reasons, such as institutional pressures or deadlines, obligations to the research community, feelings of responsibility to the research subjects, and fear of letting others down. We understand these tensions between responsibility, vulnerability, risk, and pressure as necessary and important to acknowledge in the research process, as they often result in embodied consequences for the researcher.

We offer lessons from critical disability methodology as a way to better understand the embodied consequences of research, arguing that researchers often experience continuous negotiation between their own physical well-being and their emotional and identity-based commitments. Unlike empirical approaches for researching disability, many of which are grounded in medical models, a critical disability methodology “refers to broader social context” (Berger & Lorenz, 2015) including philosophies, knowledges, and politics. In the opening chapter to their edited collection, Disability and Qualitative Inquiry, Berger and Lorenz (2015) establish the need for disabled approaches to disabled research. They focus specifically on the importance of using qualitative methods as “these methods are best suited to illuminate the social experiences of people with disabilities in ableist societies” (p. 3), and they support using the cultural model of disability to guide praxis and counter ableist perspectives of knowledge and research. The cultural model of disability has been discussed as significant and vital to doing disability research, as it considers disability as neither an “individual fate nor as merely an effect of discrimination” (Walderschmidt, 2019, p. 76) but an analytical tool to challenge constructions of normality in embodied and social interactions and experiences. Through this cultural lens, disability can also serve as a method for critical theorizing and creative practice (Dokumaci, 2018). While the lived reality of disability is certainly in focus, a critical disability methodology goes beyond the medicalized study of individual impairment and seeks to exercise research as social change, emphasizing feminist practices such as reflexive, emancipatory, and reciprocal research.

Often in academic literature, we find methodological discussions on and best practices for how to research disability. Here, we would like to pivot this mindset to instead consider how knowledge from critical disability studies and disability scholars can inform broader qualitative research approaches. We contend that tenets from critical disability methodology help resist the dehumanization and mechanization of qualitative researchers by focusing on, rather than ignoring, the body. Drawing from disability theory principles such as spoon theory, anticipatory scheduling, and crip time, we ultimately argue that we can and should learn more from disability scholars to rethink subjectivity and embodiment in research design and researcher training. In doing so, we aim to encourage wider participation and inclusion among researchers at large, especially those who encounter stress and pain because of their identities and subjectivities. As this work is so interconnected with our own stories and identities, throughout this article we will integrate our personal experiences with research to further explore and contextualize these topics.

Kathleen’s Story and Researching the Difficult Topics

When conducting my dissertation research, I (Kathleen) undertook a subject and project for which I was not emotionally prepared. Prompted by my own daughter’s experiences as a young gymnast, I chose to interrogate systems and rhetorics of silencing in sports training using the case study of the Larry Nassar abuse scandal at Michigan State University and within USA Gymnastics. Former USA Gymnastics and Michigan State University doctor Larry Nassar was sentenced to 140–360 years in prison during state and federal trials in 2017 and 2018 for sexual abuse of women and girls that went unreported for decades and impacted hundreds of victims (Vaidyanathan, 2018). I had never studied issues of sexual violence before, much less involving primarily child victims.

My study involved analyzing the victim impact statements given during Nassar’s sentencing hearings in Eaton and Ingham Counties, Michigan, as well as additional victim interviews. The victim impact statements alone included 181 victims’ voices and more than 600 pages of text. I watched, transcribed, and analyzed hours of testimony from the trials and other interviews. On paper, my study design seemed ambitious in scope but otherwise sound. In practice, the emotional toll of countless hours spent alone listening to and reading gut-wrenching stories of child sexual abuse was indescribable.

I had not studied texts before that made me weep, but I also recognized quickly that stoicism in the face of the victims’ stories would not be a humane response either. Impartiality was not a reasonable, or even an ethical, goal in this case. I felt a heavy burden and responsibility in interpreting and representing other peoples’ stories, as well as pursuing this topic that involved such significant trauma to victims. As a researcher, I was both impacted emotionally and emotionally invested.

Being emotionally invested in our projects can drive our passion for the research in positive ways, but that investment can also come with consequences. In their 2017 introduction to the Family Relations Special Issue on Feminist Framings of Sexual Violence on College Campuses, Elizabeth Sharp, Shannon Weaver, and Anisa Zvonkovic speak openly about their initial hesitation to take on a project that would involve “sustained and heightened focus on sexual violence” (p. 8). They questioned whether they had the “emotional wherewithal” to endure such a difficult subject, admitting that the process was arduous and that “many days [they] were unable to engage with the material” given their own experiences with sexual harassment and violence against a backdrop of current events and publicly normalized misogyny (p. 8). They state that they pressed on, in part, because they “cared deeply about this issue” and needed feminist family scholars’ voices to be heard (p. 8). Nicole Johnson (2009), a doctoral researcher in public health, likewise tells the story of choosing to research experiences with familial breast cancer after losing her own mother to the disease. Though she knew her research would be physically, emotionally, and psychologically challenging, Johnson undertook it anyway because she felt the project “was important, that it needed to be done, and that [her] experience could provide a valuable perspective and fill gaps in the literature about the experiences of those in [the same] situation” (p. 192). The tense negotiation between investment, responsibility, and well-being is a reality for many qualitative researchers addressing disturbing and/or personally meaningful topics, and this negotiation can be painful.

When research involves difficult topics—such as but not limited to death, critical illness, and abuse—the idea that a researcher can be truly objective also becomes problematic. Objectivity is especially thorny when the researcher is part of the community they study. Researcher subjectivity has certainly been interrogated when conducting emotional and sensitive qualitative research, such as working in high-risk situations or with vulnerable populations. The influence of the researcher on the research process is “difficult to circumvent” (Hokkanen, 2017, p. 24), making emotional neutrality truly an impossible goal for researchers who are every bit as human as their human subjects.

However, our emotional responses to our research are not only necessary but important to acknowledge. Researchers’ emotional relationship to their sites of scholarship can forge unique, important connections. Given Johnson’s (2009) personal connection to her research topic, for example, she considered herself both a researcher and a participant in the research community. Yet she frames this emotional connection to her study as an “invaluable tool” that shaped both her interactions with participants and data analysis (p. 208). Researching death studies, Visser argues that “all accounts in death research are to some extent subjective, thus it is essential to be forthcoming about both one’s cultural background and personal experiences which inevitably affect the research” (2018, p. 12). Subjective experience can further illuminate the research findings, and thus the emotional experience (and toll) of doing difficult research should be openly recognized. Often, research questions themselves arise from perceived issues or “felt difficulty” (Takayoshi et al., 2012, p. 100) in existing research or the world around us, informed by our backgrounds and experiences.

And while commitment and passion lead researchers to personally meaningful research, not all acknowledgement of emotional response in research is positive. Traditional attitudes persist of “the idealistic image of scientific research [that] entails strict adherence to objectivity and emotional neutrality” (Hokkanen, 2017, p. 24). Visser (2018) notes that sharing their personal experiences in research has historically meant risking researchers’ academic reputations, potentially earning them labels like “too emotional” (p. 7). Emotional response is also framed as a threat to subjectivity or as an issue to be understood, resolved, and/or mitigated in challenging research situations, such as Thomas Bille and Vibeke Oestergaard Steenfeldt’s (2013) interrogation of the emotional feeling of “awkwardness” experienced during fieldwork in “risky” or “dangerous” situations (p. 2). Solutions-focused approaches to resolving the reality of emotion in fieldwork are offered in studies that seek to diminish the dangers of emotional work to the researcher (e.g., Dickson-Swift et al., 2007; Johnson & Clarke, 2003).

In addition to the negative perception of emotions’ influence in research, we must also acknowledge that closeness to the subject can open researchers to vulnerability—a risk that, while important and useful for the work that we do, can also come with its own, embodied effects. Qualitative researchers bring vulnerability into their work in ways that are unique to each of our bodyminds (which, in disability studies, is the integrated connection between the mind and body) and dependent on contexts (Price & Kerschbaum, 2016, p. 49). This vulnerability helps us stay emotionally connected to research, but vulnerability can impact other areas of our lives. For example, during their interviews with public health researchers who had conducted qualitative research on sensitive topics like violence, drug and alcohol abuse, and suicide, Dickson-Swift et al. found that researchers felt both physically and emotionally vulnerable, as “[researchers] are effectively opening up in an embodied and personal way to the suffering of that other person that may give us a heightened sense of our own mortality and vulnerability” (2007, p. 342). Particularly with research related to trauma, data collection is not just a task but a relational process that includes emotional risk on behalf of the researcher and participant (Campesino, 2007). While ample studies have considered how participants experience vulnerability in research, we feel a need to further explore the relationship between researchers, their vulnerability, and their embodied consequences. Our next section therefore addresses the relationship between researchers and embodiment in qualitative work.

Leah’s Story and the Embodied Stress and Pain of Research

When conducting interviews for my (Leah’s) dissertation during the summer of 2019, I had a participant voluntarily share stories of their abuse. I was not prepared for this turn in conversation, as my study was focused on making mobile app designs more accessible for those with affective disorders and/or psychiatric disabilities, not, I thought, trauma. It wasn’t until I was transcribing the interview that I recalled what was actually said during the conversation, because at the time all I could think about was my body. I remember the sensations: my hands feeling cold and numb, my tongue stuck to the roof of my mouth. My breathing was thicker, and with every heartbeat it seemed as though my mental self was being shoved back further and further from my physical form—like I was being buried. At some point, the interview ended, and I managed somehow to thank the participant for their time, save the audio recording from our conversation, and give a strained smile as they left the interview session. But as soon as the door closed, I collapsed in my office chair like my entire self was deflated, unable to move as the unseen systems of my body crashed. I was cold, my thoughts were scattered, and I couldn’t remember anything that was said in the last 10 or 15 minutes. I eventually realized, with a sort of numb academic rationality due to a lifelong experience of living with anxiety, that what I had experienced was probably a form of panic, of potential triggering.

I ended up rescheduling my commitments for the rest of that week, and the time was spent in a fog. The thought of experiencing that moment of strange numbness again filled me with a deep weariness. I was unable to articulate the effect my research was having on me, but I knew that something had crossed over from mental and emotional exhaustion into physical symptoms that necessitated bodily recovery. At the same time, I felt responsible for continuing the work I had started. An act of bartering therefore emerged. I wanted to do work that I had a deep emotional commitment to as a bipolar person, but the emotional toll of said work had proven to take a negative, physical effect on me.

Emphasizing the bodily experience of qualitative work, trauma in research has been framed as contagious, as researchers experience stress when helping or wanting to help a traumatized person in a phenomenon called “compassion fatigue” (Figley, 1995). Researchers may also experience “harmonic resonance” (Connolly & Reilly, 2007) in qualitative investigation, as they become a repository for the feelings, stories, and emotions of their participants—potentially internalizing the external traumas of their study. The after-effects of qualitative research are numerous, but often include loneliness or exhaustion (Lowes & Paul, 2006) or fatigue (Dickson-Swift et al., 2007), as emotional distance becomes impossible in the co-creation of knowledge generated by social interactions.

At some point, these effects are inevitably felt on the body, as stress manifests into physical symptoms. Common physiological responses to stress include exhaustion, fatigue, insomnia, or crying. Even pain can be caused in the form of upset stomachs, aching or strained muscles, or grinding/clenched teeth. In extreme cases, stress can manifest as triggering or panic attacks. Researchers who make themselves vulnerable in their work to study difficult or personally important topics therefore run risks on emotional, psychological, and physical levels. The researcher becomes a site of negotiation and tension: what are acceptable amounts of stress? What thresholds are worth crossing for research? Do these thresholds shift when the research relates to the researcher’s own subjectivity? And, ultimately, how does our relationship to stress affect our research practices?

Embodied Research: A Practice of Boundaries and Balancing

To reflect on and interrogate these questions, and the unstated boundaries of what is bodily acceptable in the research process, we borrow the concept of “allostatic load” from health and medicine fields as a guiding metaphor. Allostatic load comes from allostasis, or the body’s ability to maintain stability through change (McEwen, 2002, p. 110). Allostatic load is “the price the body pays for being forced to adapt to adverse psychosocial or physical situations” (McEwen, 2002, p. 111). While allostatic load has a concrete medical definition, as well as assessment measures, we are attracted instead to the philosophical idea of balances and limits within the body as it relates to methodological practice, as well as investigating the threshold between protection and damage. As stress mediators “have protective effects in the short run and yet can have damaging effects over longer time intervals” (McEwen, 2002, p. 109), we wonder what this might look like in the research space, particularly for those researching areas, communities, or issues with which they have subjectivity or a close emotional relationship. The amount of stress a body is able to handle is an act of continuous negotiation. For qualitative researchers investigating our own, marginalized communities, the need to safeguard (“flight”) is often at odds with a sense of personal attachment and responsibility to our communities, particularly in the case of emancipatory research (“fight”).

We are concerned about stress as embodied practice and feel a need for a methodological approach that acknowledges the embodied, physical aspects of subjectivity in research. We recognize the duality of how stress can trigger fight or flight response, and we also understand that stress can lead to physical pain. But stress can also encourage empathy and grounding in our work, such as Lippke & Tanggaard’s experience when they “bodily (e.g., my stomach muscles became tense), sensed the interviewee’s need for sameness and leaned in to her need for a professional ally” (2014, p. 141) during an interview study. While we value such empathy in the research process, we also acknowledge the relational risk of both stress and pain that is inherent in difficult research, especially when working with research subjects who are experiencing pain. Neuroscientists have studied how perceiving pain in others can trigger areas in our own brains responsive to self-pain (e.g., Jackson et al., 2005). Humans are believed to “mirror” emotional and even physical responses observed in others, suggesting that our own emotional states can be impacted by others and that observing painful states should be regulated to prevent personal distress (Sowden et al., 2021). Methodological approaches must recognize that empathy for the pain of our research subjects may lead to mirroring our own emotional and physiological responses and help mitigate these realities.

We believe that a critical disability framework can inform such a methodological approach that accounts for this physical management of stress and pain and their limits in qualitative research, as critical disability studies research has established overarching themes we find useful in addressing important tensions between positionality, embodiment, and emotion in qualitative research. While disability studies has been critiqued for “lacking a unified methodology” in the past (Price, 2012, p. 159), scholarly discussion and a subsequent, shifting definition of a critical disability methodology has emerged among scholars in the interdisciplinary field of disability studies. We understand this mutability as essential and positive, as experiences and goals among disability communities and disabled individuals vary widely, and their surrounding contexts are not fixed. Additionally, we agree with critical disability scholars that “the meaning of ‘disability studies methodology’ cannot be arrived at, but must continue to be challenged, and changed, as both the world and the meaning of disability itself change” (Price & Kerschbaum, 2016, p. 26). In the following section, we briefly synthesize previous and current approaches to critical disability methodology and identify these connecting themes within research design, specifically qualitative inquiry. Following this, we add our own contributions by discussing how a critical disability approach to qualitative research allows for rehumanizing the researcher in the face of emotional or physical risk in their work.

Locating and Integrating a Critical Disability Methodology

There is a critical difference between studying disability medically and studying disability in wider social, political, and social contexts. In 1975, the Union of Physically Impaired Against Segregation (UPIAS) authored a statement defining the principle of social disability that is still the foundation of critical disability studies (Shakespeare, 2006). Social disability states that society is the root of disability, and that it is because of oppression that disabled people are prevented from full participation in their communities (Shakespeare, 2006). To contextualize this difference, a well-used example is that a wheelchair is not a sign of disability, but stairways that deny building access to wheelchair riders are disabling. The social model has been complicated, contested, and nuanced over time, such as Carol Thomas’s (1999) expansion of the model to psycho-emotional, which is a feminist perspective that looks at the inner-state of disablism, such as trauma. Alison Kafer (2013) expands the model to sociopolitical, recognizing that political power also contributes to disablement through inequity and oppression. Modern movements in disability studies also emphasize a cultural model of disability, which accounts for the importance of personal experience, cultural systems, and celebrating disability identity (Berger & Lorenz, 2015).

Through our literature review on critical disability methodology, we have identified potential meeting places in methodological approaches and goals. Margaret Price (2012), for example, offers four contact zones that shape and are shaped by disability methodology: access, activism, identification, and representation. These contact zones are important areas when considering relationships between embodied experience (and, as established, pain) and qualitative research. The first contact zone, access, encourages inclusive participation in designing qualitative studies—from integrating narrative, ethnographic, and field methods; to centering marginalized or underserved participants in our work; to ultimately prioritizing research accessibility. This focus on inclusivity has broader implications for qualitative research at large, as we consider its applications toward informing how researchers approach sensitive or difficult topics in the face of their own subjectivity and positionality. Researchers’ ability to mitigate emotional investment, vulnerability, and risk is ultimately a question of access, which is important to acknowledge when designing future studies and training programs for qualitative researchers.

Considering our earlier point about the felt responsibility many qualitative researchers experience when conducting research within and with their own communities, Price’s second contact zone, activism, helps us consider how felt responsibility is negotiated and transformed into action. Price states that activism can be a dynamic that is “uncomfortable” for researchers, offering “emancipatory design” (2012, p. 168) as a possible solution for researchers within disability studies to direct this discomfort meaningfully. We understand the idea of emancipation, a central tenet of critical social disability studies, as a process of questioning and acting throughout a research project to determine who the research is for, who it helps, and how it advances good for participants or users. In these questions, the end goal is activist, while still being mindful that contemplation is not equivalent to direct action (Price, 2012), and that true emancipatory research involves direct participation from researched individuals and communities (for example Oswal & Palmer, 2022). When the qualitative researcher is contemplating situations of emotional vulnerability, personal investment, or both, considering whether their research can lead to direct action, and if it is involving direct participation, is an important factor in determining what are acceptable stressors in their work.

The third and fourth contact zones proposed by Price, identification and representation, are essential to understanding this methodological approach. Identification is of special importance in disability research, with arguments being made that disability studies research “must make more space for explicit identification by researchers—not in a rote, ‘here’s my diagnosis’ way, but in ways that are characterized by creativity, contradiction, and revision over time” (Price, 2012, p. 171). The act of identification through disability studies research is one that understandably inspires a multitude of responses and sentiments. In some instances, identification can be an exercise of power and pride. Tobin Siebers (2004), a notable disability theorist, uses the queer and feminist frame of a “masquerade” (p. 5) to explain the act of taking on a stigmatized identity and owning it, “claiming disability rather than concealing it” as “the masquerade fulfills a desire to tell a story about disability, often the very story that society does not want to hear” (p. 19). The act of disclosure is also instrumental in combating stigma (Uthappa, 2017) and gaining agency (Kerschbaum, 2014). For other disabled researchers, however, identification in their research has been more difficult and transformative, such as Leslie Broun’s experience of including themselves in a qualitative study as both a researcher and research participant, resulting in the “ongoing upset” from “honestly confronting the reconfiguration of the self” in the research process (Broun & Heshusius, 2004, n.p.). While identification of the self as a disabled researcher or ally “can help unsettle the hegemonic god trick of gazing from an unmarked position” (Price, 2012, p. 171), it is important to note the potential mental, emotional, and embodied toll of identification. Through a critical disability understanding of identification, subjective qualitative researchers can process stigmas surrounding their identities or communities and potentially uncover new understandings of their emotional investment in their work or feelings of responsibility toward their participants or communities, as we find “overlap between the concerns of DS methodology and the concerns of qualitative research more generally” (Price, 2012, p. 176). A disability studies approach to identification connects to representation in qualitative work, as it necessitates more attention to the imaginary boundaries between those researched and those who are researched (Fine et al., 2000; Price, 2012), allowing for more meaningful sharing of knowledge outside of flat reporting from the fictitiously uninvolved, unbiased, and removed researcher.

We find the emphasis in existing disability methodology literature on the power and constraints of access, activism, identity, and representation to be intimately connected to subjectivity in qualitative research. Research tensions, such as acts of disclosure, interrogating one’s identity, building or maintaining community connections, and practicing emancipation and reciprocity through research, are inherently tied to a researcher’s own relationship to embodiment and positionality. A critical disability approach can recenter and rehumanize qualitative researchers—and their connections between identity and embodiment—when they are tackling sensitive or difficult projects. Being cognizant of a critical disability methodology could allow for more equitable engagement in the research process among participants, researchers at large, and especially disabled participants and researchers through a careful attention to the bodymind and its varied and unique realities. Our next section takes a narrower focus on these embodied experiences of qualitative researchers, as well as opportunities through a critical disability approach to help mitigate the metaphorical allostatic load of embodied stress and its results.

Embodiment, Mechanization, and Rehumanization in Qualitative Research

Qualitative researchers are not always positioned as persons in high-stress roles. Relatively little scholarship, strategies, or training address how qualitative researchers may process the embodied experiences and physical ramifications of their work, as “much of the literature regarding vulnerability in research focuses on the vulnerable nature of being a research subject but not on the researcher’s vulnerability” (Dickson-Swift et al., 2007, p. 342). While we do not deny the positive effects of physical responses in research, such as the encouragement of empathy with our participants (Lippke & Tanggaard, 2014), our personal experiences with research make us wonder and worry about dehumanization in the day-to-day realities of qualitative work. Dehumanization, or the process that is “often framed as a functional coping mechanism for reducing stress” (Winderman & Landau, 2020, p. 524), manifests in qualitative research when researchers are treated as objective and emotionally neutral instruments of the knowledge-making process. As Connolly and Reilly share in their reflections on studying trauma, we are researchers within “very human context[s]” (2007, p. 524), and it is important to attend to our identities and our bodies in the work that we do and their impact on our research process. Knowledge of critical disability methodology can sharpen this attention when training new researchers and protecting current ones.

Disability studies scholars often interrogate meanings and definitions of dehumanization as well as the mechanization of the body—or seeing someone’s physical self as a system of parts removed from personhood. A “personal cost” is involved in research participation, and “for disabled people, conducting disability research can never be a purely academic issue…we need to put safeguards in place for our own research projects, to minimise the risk of overload and burnout” (Tregaskis, 2004, n.p.). Disability perspectives on embodiment can help us rehumanize the researcher in general and make research practices more equitable for disabled folks (researchers and participants) specifically.

As one applied example of critical disability theory informing methodology, disability scholars often speak about the act of bargaining between the limits on their body and energy, calling back to our driving metaphor of the allostatic load. One common understanding of this negotiation can be found through “spoon theory.” Spoon theory is credited to Christine Miserandino, who used a number of physical spoons as a metaphor to describe to a friend how their energy levels worked as someone living with lupus (Gifford, 2019). “Spoons” are an applied way to represent the energy taken to complete a task. Every person starts the day with a certain number of spoons, and every task takes a certain number of spoons to complete. For example, someone without depression might start the day with 10 spoons, while someone with depression begins with two. The disparity between energy levels means that the person with two spoons cannot accomplish the same number of tasks as the person with 10, no matter how much effort is extended. Framed another way, someone with a battery that cannot keep a full charge is going to run out of power sooner when attempting the same tasks as someone starting the day on a full battery. In research and the training of researchers, more attention is needed on the lived realities of energy levels for folks with different, embodied experiences and how that affects the research process.

Disability scholars offer important insights in applied practices when considering daily, lived negotiations of the body. For example, disability scholar Alison Kafer offers the related act of “anticipatory scheduling,” a method of energy bartering where “the present moment must often be measured against the moment to come,” or “if I do X, then I will be unable to do Y” (2013, p. 39). A similar act of bartering is described by Cepeda (2021), a scholar who discusses time in relationship to her complex PTSD and bipolar: “I work when I am able to read, focus, and think lucidly. But this is not always the case, a reality that enhances the pressure to be productive whenever I can—because I never know what’s coming around the corner” (p. 311). Within discussions of embodiment, pain, and stress, there is a clear need to reimagine the purpose of time in relationship to work and research.

Critical disability scholars have offered crip time as one framework for this revisiting and reforming. Crip time, or a flexible and adaptable approach to things like schedules, deadlines, and daily chronicities such as sleep schedules (Price, 2012; Samuels, 2017), is “beautiful and forgiving” (Samuels, 2017, n.p.) and allows for rest, delay, and breaks. This approach to time “insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing beyond its limits” (Samuels, 2017, n.p.) and respect our own embodied and mental thresholds. To exemplify the importance of crip time in research, Price and Kerschbaum (2016) discuss the feeling of immediacy in interviewing, as well as the time pressure it creates for disabled researchers. They also call attention to how rare it is for qualitative literature to explicitly address breaks in interview protocols. Their work on crip methodology centers vulnerability, paying attention to bodyminds, and considering relationships of power throughout the research process.

While these frameworks were developed specifically in reference to disability, they communicate principles and ways of thinking that are important to subjectivity and embodiment. When a researcher is studying a difficult, sensitive, or traumatic topic to which they have an intimate connection, compared to a researcher who does not hold that same emotional commitment or responsibility, they face different limits to their energy reservoirs and the potential for more severe embodied consequences.

Even being involved in human-participant work can be an isolating and lonely act that results in fatigue or stress, as participant confidentiality rightfully comes first, but is potentially at the expense of a researcher’s mental or emotional health (Brannen, 1988). As Dickson-Swift et al. (2007) note, researchers are often well-prepared to lay out a plan for protecting research participants, but “researchers undertaking qualitative research, and particularly qualitative research on sensitive topics, need to be able to make an assessment of the impact of the research on both the participants and themselves” (p. 328). Incorporating critical disability theory and methodology is one way to not only acknowledge the embodied aspects of qualitative research, but also to understand the need to negotiate these acceptable or unacceptable thresholds of stress and pain when contending with our multiple identities, subjectivities, and responsibilities to the communities we research.

Conclusion: Returning to Our Embodied Stories and Applications for Qualitative Researchers

While this study owes its origins to our individual dissertations, we came together to write this article in the fall of 2020. During the initial wave of the COVID-19 pandemic and the need to isolate, we often had to bargain with the gains of making progress on our research versus the very real physically and mentally exhaustive demands of this time period. This article, originally planned to be finished in an academic term, has now taken more than three years to complete. It has been all too apparent to us, as researchers seeking to be more honest about the messy realities of qualitative research, that the ways of thinking we can learn from critical disability methodology are appropriate not only to how we collect and interpret findings, but also in the important time we need to make sense of them and communicate that sense-making. This time of process, of rest and healing, is often at odds with an overall academic culture resistant to shortcomings and less-than-productive behavior.

With our experiences (and, often, exhaustion) in mind, we offer some suggestions for considering a critical disability approach to research design and training—approaches that center on protecting physical energy; allowing for recovery; and maintaining the allostatic load between the embodied stress of the researcher and the need to research sensitive, traumatic, or identity-based topics.

Returning to Leah’s Story: Reflections on Failed Negotiating

As someone who failed to successfully balance the demands of the research I was invested in and my personal well-being, I wish I would have protected my mental and physical health more intentionally throughout my study. I underestimated the effect my being bipolar would have on my work, and I ignored the effect my identification with the community I was studying would have on me. Because of this physical fatigue and stress, my ability to conduct research was affected. My body ultimately failed in its bargaining.

My study focused on accessible design for users with non-physical disabilities, particularly those with affective disorders. Participants were recruited based on if they self-identified as having these disorders, such as but not limited to bipolar, anxiety, OCD, and depression. While my study had multiple phases of data collection, one part involved interviewing participants about their daily use of technology. As a gesture of reciprocity, I began interviews by disclosing that I was a bipolar person who had witnessed auditory and visual hallucinations, and that I was open to any questions participants might have for me on my experiences. This sounded like a great idea. In terms of methodological principles, I contend that it is still a great idea. But when I designed this protocol, I failed to consider the emotional and mental toll it would take to talk to up to 12 strangers on my lived experiences and stigmatized identity. I found these discussions important and valuable, and I don’t regret the decision to have them. But I do wish I had better prepared to engage in these dialogues in terms of energy and had better safeguards in place to keep myself from becoming triggered on a conversation topic that was likely innocuous for the participant, but traumatic for me. After completing this study, I felt it was important to address how being mentally ill can aggravate these after-effects and the importance of the researcher (and in my case, a psychiatrically disabled researcher) being able to recognize their own boundaries. Because I didn’t. In fact, when I was researching, I did not even realize I had them.

Kathleen and I have argued that emotional and personal investment in our research projects can drive our passion for the research in positive ways, including sustaining the researcher through the various tolls of their research. We also believe it is so important to have folks researching their own communities, identities, and lived experiences. Being part of the larger research community can offer greater insight and authenticity in research, but as the both of us have argued, this personal connection can also open up potential pain points. It is therefore necessary to think through how these researchers can save their spoons and share perspectives, reflections, and strategies with other researchers. Primarily, as someone with a psychiatric disability, I want to call attention to how my embodied state actively affected my research ability. The manic version of myself was all too happy to schedule six interviews across two afternoons. A depressed version of myself could barely manage to turn on a computer. Both states of mind had their effect on how I focused or interacted with participants. In a manic state, I process things faster, and as a result I’m sure I asked questions too quickly or didn’t wait long enough for responses. I am impulsive, overcommit, and am often scattered. While depressed, my energy is gone, and it is possible that my fatigue came across as disinterest despite my investment in my project and my participants’ stories. It is important that disabled researchers, as well as those who train disabled researchers, professionally acknowledge how embodiment informs, influences, and at times, limits the design and execution of qualitative work. It is important to train all researchers on how to recognize physical constraints and affordances, as well as how researching from the subject-position might change them. It is important that folks who experienced embodied challenges while doing research can be public with these challenges and the feelings that come with them—as a learning tool, as an acknowledgement of shared humanity, and ultimately to establish solidarity and community.

Returning to Kathleen’s Story: Making Emotion and Pain More Visible

I still cannot read some of the lines that I wrote in my own dissertation out loud without choking up. Some lines are unspeakable because they are unthinkable—the horrors of young athletes living with the consequences of abuse and the knowledge that they were betrayed by the adults and institutions they trusted the most. Other lines, stemming from my own personal narratives, speak to my own vulnerability as a parent, as a researcher, and as a human being. Truthfully, I worried about this vulnerability and personal disclosure. I felt embarrassed, perhaps even ashamed. I questioned my own subjectivity and close connection to the terribly difficult subject I was studying. I questioned my tears, anguish, and growing rage. I was an angry mother who, at the time, had not fully considered how valuable an emotion like anger can be for sustaining a researcher through really difficult research.

Ironically, just as I was interrogating sports training techniques that force athletes to separate and repress their own mind/self and embodied responses (e.g., fear and pain) from their physical performance, I hesitated to express my own natural physical, psychological, and emotional responses to my research. I was critiquing the dehumanization and mechanization of athletes while fighting the urge to ignore or hide my own human responses to that very research project. Fortunately, I worked with committee members who encouraged me to reconsider how to frame both personally meaningful research and researching from a position within the wider subject community, but I suspect this experience is more the exception than the norm. The ideals of objectivity and emotional neutrality in research persist, in my view, to the detriment of research.

Of course researchers should not be dishonest about their own subjectivity and positionality. In fact, our call is for greater honesty and transparency about emotion, pain, and embodied responses in personally meaningful or challenging research. It is possible, even ideal, to research from the perspective of a participant and with a purpose and goals that are at the same time both quite personal and for the greater good. Pain can be both an obstacle and a motivating force in addressing the truly hard topics, and researchers should not be afraid to negotiate their own pain thresholds in their methodology and protocols, as well as share that pain openly in their research notes and reflections. I welcome more honest tears and less forced stoicism. Ultimately, being more transparent about our embodied experiences when sharing research results, protocols, reflections, etc., supports an overall research practice that values and respects acceptable thresholds.

Possibilities for Applying Critical Disability Methodology in Qualitative Research

We do not equate the unique and varied experiences of those with disabilities to scholars experiencing subjectivity at large. Instead, we simply propose that we can (and should) learn from disabled scholars and activists to address the embodied effects of qualitative work and methodological practice. Knowing that emotional and personal commitment can often drive research questions, we are concerned about the ethical implications for academic departments and programs overseeing such research and the training of future researchers. We have asked: how does stress contribute to and/or impact an embodied practice of research? How well are researchers informed and prepared to address vulnerability in certain types of qualitative inquiry that may be triggering and/or painful to the researcher? How do researchers know when they have met their limit in their work? There is no definitive answer to any of these questions, as positionalities, subjectivities, and embodied realities differ vastly from researcher to researcher, from experience to experience. Though both of us had wonderfully supportive and positive mentorship throughout our dissertation processes, unforeseen effects still happened. The tensions between embodiment and subjectivity in research are a messy knot to untangle. And, quite frankly, we don’t want to untangle them. Instead, we emphasize a need for more instructional practices that directly and routinely acknowledge that these tensions exist and allow researchers to speak transparently of them, to consider them in their research protocols, and ultimately determine their own acceptable thresholds.

We conclude this paper by offering potential, but not definitive, possibilities for critical disability methodology in practice for qualitative researchers and their mentors. Drawing from critical disability theory and disability justice, we are concerned with questions of access in research, and emphasize the need for love (Mingus, 2018) in understanding this access. In this vein, we focus on love for the qualitative researcher involved in emotionally demanding, distressing, or painful research.

Our first recommendation is for the intentional inclusion of critical disability studies scholarship in classrooms concerned with preparing and training qualitative researchers. As an interdisciplinary field that values embodied experiences, understanding one’s own bodymind, and recognizing social and environmental limitations to access, critical disability scholarship is essential material for emerging scholars learning how to conduct qualitative work. Scholars of critical disability scholarship are already making compelling arguments and offering important insights into qualitative research design (for example Berger & Lorenz, 2015; Oswal & Palmer, 2022; Price, 2012; Price & Kerschbaum, 2016; among many others). This scholarship can and should be used to facilitate discussions on embodied factors in research. We also recommend learning from disabled researchers to design, facilitate, and process qualitative work that focuses on distressing or difficult topics. As discussed earlier in this article, crip time and crip methodology offer critical frames for understanding the importance of rest, distance, and flexibility in the research process, as well as searching for and appreciating what our bodyminds are trying to tell us in situations of stress, trauma, or pain. Training emergent scholars on how to recognize their own limits and to negotiate within them is essential to accessible research practice.

Finally, we believe it is important to cultivate a community of care in qualitative work, one where calling attention to pain, stress, and trauma in research is not stigmatized. While a researcher’s metaphoric allostatic load is very much personal and based on complex, networked identities and experiences, opening up space for non-judgemental discussions on embodied reactions such as stress and pain can help a researcher negotiate their own boundaries and energies more effectively. In particular, mentorship and peer-to-peer collaboration and/or debriefing are important avenues for building these communities. For instance, this very collaboration is a result of such a community. Before this article, we were strangers, brought together by a shared mentor who saw similar tensions in our work and encouraged us to explore these tensions further. In our collaboration, we were able to find comradery despite having different identities, research projects, and reactions to our work. And it was our separate, positive mentorship experiences that allowed us to be vulnerable about our embodied reactions in our respective dissertations in the first place.

We encourage greater acknowledgement, at both the individual and institutional levels, that qualitative research is full of bartering and negotiating between investment, responsibility, and well-being, and that this process can be painful. We also argue that we should prepare researchers for these realities and respect the limits they establish. We understand care for the qualitative researcher both as an act of love and as an act of access, and we actively invite further conversations that continue this understanding.