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Encounters With the White Coat: Confessions of a Sexuality and Disability Researcher in a Wheelchair in Becoming
Abstract
In this autoethnographic essay, I will deconstruct my own being and becoming of a female researcher with a spinal cord injury (SCI) in the first half of my doctoral research on the sexual well-being of women with SCI, more specifically in the aftermath of a 1-month internship at a rehabilitation hospital where I assisted the health care team and had informal conversations with residents. Following Barad’s plead for diffractive methodologies, I aim to track interference patterns of the range of relationalities—imagined or mobilized by myself or by others—that I embraced or shied away from during my fieldwork based on field notes and memory to discover from them the constant process of my own becoming-in-the-world with a “broken body.”
... On the other hand, it can also be highly emotionally exhaustive due to the inevitably personal impact that it can have (Pearce, 2018). There are similar experiences of being granted access to interviewees' intimate lives owing to a shared lived experience of disability; this simultaneously eases mutual understandings of disabling barriers and oppressionbut can also create difficulties for the researcher in distancing themselves from the material and its analysis (Blockmans, 2019;Bylund, 2022). However, a shared or insider's position is not always possible or desirable. ...
While the qualitative research interview can be a relevant and effective method, it can also be highly demanding for both the researcher and the participant. In this paper we analyse the methodological and ethical challenges that can arise for sexuality researchers who conduct interviews with members of marginalised communities. We thereby aim to open a discussion and contribute with knowledge that we ourselves missed as doctoral students – and still do as researchers – and which we therefore hope can be used in education as well as in continuous reflexive discussions among scholars conducting sexuality research in general – and in particular with individuals belonging to marginalised populations. We revisited our separate previous studies and made a joint re-analysis of our interview processes in three different projects conducted in Sweden between 2011 and 2021. Participants in the three studies were people with disability/chronic illness, transgender and non-binary gendered people and incarcerated young people in secure state care. We argue that the qualitative research interview can be seen and used by interviewees as an opportunity for advice and emotional support and that the methodology can bring added therapeutic value to participants whose sexual health needs have been previously ignored or denied. The researcher should therefore be prepared to share whatever sexuality-related knowledge or support the interviewee seeks – anything else would be unethical. Essentially, this concerns the very fundamental reason why we are doing research in the first place: to contribute to new knowledge on sexuality and thereby greater possibilities for the realisation of the sexual health and rights of persons belonging to marginalised communities – but without this happening in a way that jeopardises interviewees’ well-being. We therefore suggest that qualitative interviewing on sexuality requires systematic preparative work with reflexivity on how to balance research ethics, professional conduct and academic rigour.
The article deals with the Belarusian legislation and international legal acts in order to answer the question whether the rejection of the medical model of disability is implemented in Belarusian sports law. The author studies the concept of a disabled person, models of disability and legal regulation of adaptive sports from the point of view of sports law and human rights. It is proved that despite the declaration of non-discrimination of persons with disabilities, the problems associated with the medical model of disability remain very relevant in Belarus. The Belarusian legislation uses the concept of formal equality, but it is supplemented by victimization of disability and objectification of persons with disabilities. The emphasis is shifted to the charity nature of medical care, which brings us back to the medical model. The article argues the importance of adopting a Draft Law on Adaptive Physical Culture and Adaptive Sports to eliminate the existing shortcomings of the legal regulation of sports for persons with disabilities. The author also emphasizes that equalization of opportunities in sports should be defined much wider than providing sports facilities, ensuring equal conditions and opportunities for the development of adaptive movement in relation to the conditions and opportunities for the development of non-disabled sports and non-disabled physical culture. Equalization of opportunities should include a freedom of adaptability as a key category and one of the basic principles of the adaptive movement.
In our daily lives, we tend to put people - others and ourselves - in boxes (such as social categories, professional conduct, research participant samples, braces), especially when variation becomes associated with unruliness and triggers the reflex to manage/control/contain to prevent further deviation. This leaves little space for listening, creativity, externally and internally driven movement. This article offers an exploratory interpretative phenomenological analysis of a young woman with a spinal cord injury's (SCI) becoming-in-the-world as a person with a physiologically “broken body” (Shildrick & Price, 1996). This serves as the first basis for mapping the “psychic life” of normativities as manifested in her perspective towards her body and sexual/romantic relationships (Butler, 1997), i.e. the presence, persistence, and permeability of norms in her psyche influencing her sex- and body-related thoughts, feelings, motivations to act or not to act. How and why does she desexualise her body, yet also finds space to rethink the possibilities of living with her body? What might (her and her network's) processes of abnormalisation and disownment of her body tell us about (our) creation, treatment, and re-owning of unruly bodies? Sophia's story shows how a body and the person living in/ with it can become something to be contained and managed physically (daily living assistance), medically (medication, check-ups), aesthetically (braces), socially (“no partner” and “no sex” click), and psychologically (“no attention to hands touching and moving my body” click) to such an extent that they become desexualised and voiceless, yet also, however fragile, the potential for acts of resistance and movement.
Drawing on memory stories told in a collective biography workshop about children’s encounters with schooling, this paper experiments with re-imagining the child-student-subject as an ‘emergent intracorporeal multiplicity’ [Fritsch, K. 2015. “Desiring Disability Differently: Neoliberalism, Heterotopic Imagination and Intra-Corporeal Configurations.” Foucault Studies 19: 43–66, 51]. From the feminist new materialist perspective that the authors work with, the child is configured not as an entity prior to, or separate from, encounters with education systems, but emergent with-in them. This paper focuses on difference in human relations, and in particular on the intersections of disability and gender. It does so not in terms of essential characteristics of individuals, but as emergent, in-the-moment, with others. In focussing on the detail of lives-in-their-making, the authors ask, with Barad [2007. Meeting the Universe Halfway: Quantum Physics and the Entanglement of Matter and Meaning. Durham: Duke University Press], if we are interested in justice, how we are to ‘understand our role in helping constitute who and what come to matter?’
School girls in Sweden are reported to develop psychological (ill)health in relation to their school behaviour and over-achievements. The methods offered as prevention and treatments are aimed at the individual girl's self-management of stress, health and psychological state, putting the responsibility on the girls themselves. This feminist agential realist study aims to explore how the material-discursive school environment, that is, the entanglement of architecture, materialities, bodies, discourses and discursive practices – including the discourses on girls' health in research and media texts – are collectively responsible for, co-constitutive of and enacting female students' ill- and well-being. Doing a diffractive analysis, we register how we as researchers are involved and co-productive of this complex apparatus of knowing of school-related ill-/well-being. A diffractive analysis aims to not only analyse how this apparatus is made and what it produces, but also how it can be productive of new possible realities that might produce more livable school environments.
The physiological and psychosocial aspects of sexual function of men with spinal cord injury are discussed in terms of who should counsel them about sex, what should be told, the kinds of sexual activities open to the cord injured, and the sexual rewards involved. A list of precautions for the sex counselor is given.
In this article, the author discusses friendship as a method of qualitative inquiry. After defining friendship and positing it as a kind of fieldwork, the methodological foundations of friendship as method are established. Next, it is proposed that friendship as method involves researching with the practices, at the pace, in the natural contexts, and with an ethic of friendship. Finally, the author describes this method's strengths and considerations for both researcher and participants.
Howis the “coming out” process similar or different for peoplewho identify as queer or disabled? Although there are inherent problems with analogizing social identities, Ellen Samuels suggests that employing analogies critically might yield greater results than avoiding these analogies. When a disability is not immediately signaled by a person’s appearance, the disabled person experiences a kind of “coming out”: both in revealing (and “proving”) disability identity to familymembers and in experiencing the revelation of disability itself. The perception persists that nonvisibly disabled people prefer to “pass” by minimizing the role of disabled identity. Samuels pointed out that passing conflates two separate dynamics: deliberately hiding a disability and passing by default because of nonvisibility. When a disabled person reveals a disability rather than attempting to pass, he or she is oftenmetwith a suspicion of fraud. The analogy of coming out as queer and coming out as disabled breaks down when comparing the meanings and consequences of these declarations. Nevertheless, Samuels discusses how two identities-lesbian-femme and nonvisibly disabled-both cause a “category crisis” when visible appearance doesn’t correlate to self-identification. Moreover, peoplewithnonvisible disabilities canbemarginalizedwithin disability communitiesandthecommunity at large when disabilities are unrecognized. Similarly, femme lesbians must negotiate queer identity when choices about personal appearance don’t signal queer identity to a wider community. Samuels argues for analogizing identities (and queering disability studies) in order to find subversion at the meeting points between bodies and communities, between voices and resistant audiences of power.
This book is both practical and provocative. It demonstrates the insights and the challenges of a discourse-based orientation to educational and social research. Drawing on a variety of educational and social science 'texts' - including press articles, life history interviews, parent-teacher consultations, policy debates and ethnographies - the author shows how knowledge, power, identities and realities are constructed and problematised in discourse. The book also deals with research itself as discursive practice, examining the texts that qualitative researchers produce and consume: reports, monographs, journal articles. Practical examples are included for researchers and graduate students wishing to 'interrogate' their own data from a discourse perspective. The author develops a critical awareness of the researcher's role as writer/reader of texts. The book makes the case for 'discursive literacy' in research. While its primary allegiances are to poststructuralism and deconstruction, it draws from a wide range of disciplines, including interaction sociology, feminist ethnography, literary theory, critical discourse analysis and art history. What holds the book together is the persistent question: how to do educational research and social research within a 'crisis of representation' that has unsettled the relationship between words and worlds?
Researching Life Stories critically and pragmatically reflects upon the use of life stories in social and educational research. Using four life stories as examples, the authors apply four different, practical approaches to demonstrate effective research and analysis. As well as examining in detail the four life stories around which the book is written, areas covered include: Method and methodology in life story research. Analysis. Reflections on analyses. Craft and ethics in researching life. Policy, practice and theory in life story research. Throughout the book the authors demystify the issues surrounding life story research and demonstrate the significance of this approach to understanding individual and social worlds. This unique approach to life story research will be a valuable resource for all social science and education researchers at undergraduate and postgraduate level. © 2004 Dan Goodley, Rebecca Lawthom, Peter Clough and Michele Moore. All rights reserved.
A different starting point, a different metaphysics": Reading Bergson and Barad diffractively
- L M Tillmann-Healy
Tillmann-Healy, L. M. (2003). Friendship as method. Qualitative
Inquiry, 9, 729-749.
van der Tuin, I. (2011). "A different starting point, a different
metaphysics": Reading Bergson and Barad diffractively.
Hypatia, 26, 22-42.
- van der Tuin I