As a disabled psychologist, my discipline’s obsession with ‘adjusting’ pathologised people to normalcy has always unsettled me. However, it was not until I started my PhD that I devoted myself to problematising adjustment. I invite you join me in my story on how critical disability studies and liminality theories have shaped my understanding of adjustment to a spinal cord injury (SCI) and my way of approaching fieldwork, how the Covid-19 pandemic has radically transformed my project, and how such a global event has made it possible for me to become the first remote visiting researcher at the iHuman Institute.
Why and how to approach adjustment to a disability?: Presenting my research project
It goes without saying that any kind of transformation in our bodies or the place we occupy in society ---as is the case when a person acquires an SCI--- requires some kind of response from the person and their environment. Since WW2, Psychologists have promoted the idea that this response has to take the form of adjustment (Dembo et al., 1956). But, what does adjustment mean and what should people adjust to? Psychologists have tended to understand ‘adjustment to a disability’ as ‘adjustment to an impairment’ or, more generally, as the process by which a person with an impairment becomes satisfied with their life circumstances (Dunn 2015). Disability studies scholars have pointed out that this approach is problematic because it overlooks the fact that ‘life circumstances’ are not only determined by ‘inevitable’ impairments, but also by the transformable processes of dis/ablism, heterosexism, ageism, racism, and classism (Reeve 2000). For example, Goodley (2017) points out that dis/ableism paradoxically pushes disabled people to appear ‘plucky-yet-mourning’, since they are expected to mourn their impairment as an unquestionable loss while keeping them from expressing their actual feelings in front a public that is thirsty for inspirational messages. In turn, Liddiard (2011), points out that disabled people are led to appear asexual, while their lack of sexual desire is also potentially pathologised as a sexual dysfunction.
The notion of liminality, traditionally used by medical sociologists and anthropologists can help us make sense of such paradoxical understandings of what is a ‘well-adjusted’ disabled person. Interestingly, these authors have pointed out that people who acquire an impairment experience a biographical disruption (Papadimitriou & Stone 2008). That is, impairment dissolves the patterns that give a sense of order to their daily lives suddenly to the point that it becomes impossible to think of themselves as the same people as before the advent of impairment. Thus, a new identity as a disabled person must be constructed during a transitional period of adjustment. The anthropologist Robert Murphy and his colleagues (1988) argued that this transitional period was best described as the liminal period, a ‘betwixt and between’ state in which people struggle to regain a new place in society before returning to it, for example, in the context of a rehabilitation hospital. The problem lies, according to them, in the fact that disabled people (particularly people who have sustained an SCI) may remain trapped in this liminal state for good. These authors claim that disabled people leave the hospital (the secluded place for ‘the sick’, those awaiting either cure or death) and return home (the place for ‘the healthy’, those who fit society’s re/productive mandates) with a body that does neither fit the sick nor the healthy ideals. This ill-defined social place may have something to do with the paradoxical demands imposed on them. Interestingly, Murphy and his colleagues argue that disabled people should not be required to adjust to such a conundrum.
With such a theoretical framework in mind, back in 2018, I set out to discover what adjustment to a disability meant for people who had just acquired an SCI, their loved ones and the healthcare professionals who worked with them in the rehabilitation hospital, and how these meanings played out in the process of returning home. However, I soon realised that understanding the meaning of adjustment was simply not enough. If I really believed in the theoretical framework I had just built, I would have to delve into adjustment in the making: how it was done and how it felt. What are the paradoxes that unfold in this process and how are they related to dis/ableism, heterosexism, ageism and classism?
The way I have posed this question has undoubtedly shaped my methods. First, if adjustment is a process, it unfolds over time and place, so my methods had to account for the changes that occur during the construction of a new identity. That is how I came up with Chronotopic Diffraction, a narrative technique inspired by Narrative Productions (Balasch & Montenegro 2003) that resembled the construction of a narrative diary with every participant across several sessions over several months. Second, if I wanted to know how adjustment was done and how it felt, I had to follow people over time and place in order to understand how they adjusted (or not). Thus, I decided to use an ethnographic technique called ‘shadowing’ (Jirón & Iturra 2014), which entailed following people who had recently sustained an SCI around during their hospital stay and once they have been discharged for some months. Early in 2020, I started to feel that I wanted to share my framework and my partial results with other international disability studies research groups and learn from their work. Before I could start getting in touch with them, Covid-19 came about and all those plans fell apart.
The pandemic as liminality: adjusting my research to Covid-19
Just as impairment is said to disrupt the biographies of people who embody them, placing them in liminality, the same thing could be said about Covid-19. The pandemic has made it impossible to think of anyone’s personal or professional lives but in a before-and-after-the-pandemic way. Also, it has required a major individual and collective response, again, in the form of adjustments. Such a liminal experience forced the general public to adjust to a ‘shrinking’ and insecure world, a familiar and now exacerbated experience for disabled people under dis/ableism (see Kirsty Liddiard’s posts on the topic).
Of course, my research also required making adjustments. On the one hand, since everyone had to remain at home (or in their hospital room) and it was no longer possible to follow anyone around, shadowing was ruled out. On the other hand, shortly after the lockdown started, I texted my participants at the time and asked them if they wanted to keep working in their narrative diaries via online encounters or they preferred to wait until lockdown was over. They chose the latter. My participants and I resumed online narrative construction sessions on June 2020. By then, all of us had had the time and the means to adjust to online meetings. Although I feared that I would miss on the nuances of in-person interactions, I ended up finding in virtual encounters a very accessible way of conducting fieldwork. For example, it freed me from having to get to my participants’ homes in crowded and hostile trains, and it made it easier for them to cancel meetings in the last minute (e.g. because of pain) without feeling guilty because they felt I had put a lot of effort into visiting them.
Pandemic beginnings: starting a virtual research stay
Back in January 2021, in the middle of the Spanish third wave of the pandemic, Covid-related liminality had become the new normal. By then, it was clear that if I really wanted to undertake a research stay abroad during my doctorate, I could no longer wait until the pandemic was over. Thus, I started trying to get in touch with some of my sources of inspiration in disability studies, such as Kirsty Liddiard and Dan Goodley from the iHuman Institute. They kindly replied back and offered to have me as a virtual visiting researcher. When I learnt that my university had agreed to consider virtual research stays as valid, I was ecstatic. As a collective liminal event, the pandemic has dissolved the taken-for-granted truths as to what constitutes a ‘proper research stay’, making remote ones thinkable. Apparently, ableist excuses made such an adjustment impossible for disabled people who had spent years demanding virtuality as an access right.
At the time of writing, my virtual research stay is just kicking off. The iHuman team has given me an incredibly warm virtual welcome. I am not going to lie: there is a part of me that would have preferred to get to experience traveling abroad and meeting my academic role-models in person. However, just as with my fieldwork, I am also deeply relieved that I will not have to deal with all the usual accessibility issues I face when going into an unknown public space. I am sure that this virtual experience will provide us all with an opportunity to collectively reflect on the losses and gains of virtuality from a critical disability perspective. I cannot wait to share our conclusions.
References
Balasch, M., & Montenegro, M. (2003). Una propuesta metodológica desde la epistemología de los conocimientos situados: Las Producciones narrativas. Encuentros En Psicología Social, 1(3), 44–48.
Dembo, T., Leviton, G. L., & Wright, B. A. (1956). Adjustment to Misfortune—A Problem of Social-Psychological Rehabilitation. Artificial Limbs, 3(2), 4–62.
Dunn, D. (2015). The social psychology of disability. Oxford University Press.
Goodley, D. (2017). Disability studies: An interdisciplinary introduction. SAGE.
Jirón, P., & Iturra, L. (2014). Travelling the Journey: Understanding Mobility Trajectories by Recreating Research Paths. In L. Murray & S. Upstone (Eds.), Researching and Representing Mobilities (pp. 170–190). Palgrave Macmillan UK. https://doi.org/10.1057/9781137346667_9
Liddiard, K. (2011). (S) exploring disability: Intimacies, sexualities and disabilities. University of Warwick.
