INTERNATIONAL JOURNAL OF CHANGES IN EDUCATION
Research Article

Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses

International Journal of Changes in Education, 1(1), 2024, 4-10, https://doi.org/10.47852/bonviewIJCE32021657
Publication date: Feb 29, 2024
Full Text (PDF)

ABSTRACT

This paper adopts a joint-autoethnographic approach to explore our lived experiences of working in academia while living with chronic illness, specifically ankylosing spondylitis, at two “new” public universities in the North of England, UK. Use of the novel methodological approach of joint-autoethnography enables us to provide a snapshot into what it means to be “othered” in contemporary neoliberal academia. We contribute to existing debates, which seek to disrupt perceptions of academia as an elitist, ablest, and privileged ivory tower. Through data captured in personal research diaries, we shed light on the emotional and embodied experiences of living with chronic illness while navigating academia, and how we perform our (un)spoiled academic identities. This is important because women with chronic illnesses and disabilities are significantly under-represented in senior roles within universities. This paper will interest an international readership because chronic illnesses are widespread in the workforce, and these individuals offer a unique perspective within higher education and have an awareness of the barriers faced by other academics and students with chronic illnesses.

KEYWORDS

chronic illness higher education performance

CITATION (APA)

Wilkinson, S., & Wilkinson, C. (2024). Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses. International Journal of Changes in Education, 1(1), 4-10. https://doi.org/10.47852/bonviewIJCE32021657
Harvard
Wilkinson, S., and Wilkinson, C. (2024). Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses. International Journal of Changes in Education, 1(1), pp. 4-10. https://doi.org/10.47852/bonviewIJCE32021657
Vancouver
Wilkinson S, Wilkinson C. Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses. International Journal of Changes in Education. 2024;1(1):4-10. https://doi.org/10.47852/bonviewIJCE32021657
AMA
Wilkinson S, Wilkinson C. Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses. International Journal of Changes in Education. 2024;1(1), 4-10. https://doi.org/10.47852/bonviewIJCE32021657
Chicago
Wilkinson, Samantha, and Catherine Wilkinson. "Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses". International Journal of Changes in Education 2024 1 no. 1 (2024): 4-10. https://doi.org/10.47852/bonviewIJCE32021657
MLA
Wilkinson, Samantha et al. "Pain, No Gain? A Joint-Autoethnography of Our Working Lives as Academics with Chronic Illnesses". International Journal of Changes in Education, vol. 1, no. 1, 2024, pp. 4-10. https://doi.org/10.47852/bonviewIJCE32021657

REFERENCES

  1. Advance HE. (2020). Equality, diversity and inclusion. Retrieved from: https://www.advancehe.ac.uk/guidance/equalitydiversity-and-inclusion
  2. Afifi, T., & Steuber, K. (2009). The revelation risk model (RRM): Factors that predict the revelation of secrets and the strategies used to reveal them. Communication Monographs, 76(2), 144–176. https://doi.org/10.1080/03637750902828412
  3. Allen-Collinson, J., & Hockey, J. C. (2008). Autoethnography as ‘valid’ methodology? A study of disrupted identity narratives. International Journal of Interdisciplinary Social Sciences, 3(6), 209–217.
  4. Andrews, A. (2020). Autoimmune actions in the ableist academy. In N. Brown & J. Leigh (Eds.), Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education (pp. 103–123). UK: UCL Press.
  5. Berger, R. (2015). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. https://doi.org/10.1177/1468794112468475
  6. Braun, V.,& Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
  7. Brown, N. (2020). Disclosure in academia: A sensitive issue. In J. Leigh & N. Brown (Eds.), Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education (pp. 51–73). UCL Press.
  8. Brown, N., & Leigh, J. (2018). Ableism in academia: Where are the disabled and ill academics? Disability & Society, 33(6), 985–989. https://doi.org/10.1080/09687599.2018.1455627
  9. Brown, N., & Leigh, J. (2020). Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education. UK: UCL Press.
  10. Butler, J. (2020). Performative acts and gender constitution: An essay in phenomenology and feminist theory. In C. McCann, S.-K. Kim & E. Ergun (Eds.), Feminist theory reader: Local and global perspectives (pp. 415–427). Routledge.
  11. Butler, J. (2011). Your behavior creates your gender. Retrieved from: https://www.youtube.com/watch?v=Bo7o2LYATDc&feature=youtu.be
  12. Cann, C. N., & DeMeulenaere, E. J. (2012). Critical co-constructed autoethnography. Cultural Studies → Critical Methodologies, 12(2), 146–158. https://doi.org/10.1177/1532708611435214
  13. Chrisler, J. C. (2011). Leaks, lumps, and lines: Stigma and women’s bodies. Psychology of Women Quarterly, 35(2), 202–214. https://doi.org/10.1177/0361684310397698
  14. Coughlan, G.,& Clarke, A. (2002). Shame and burns. In P. Gilbert & J. Miles (Eds.), Body shame (pp. 155–170). Brunner-Routledge.
  15. Custer, D. (2014). Autoethnography as a transformative research method. The Qualitative Report, 19(37), 1–13.
  16. Defenbaugh, N. L. (2011). Dirty tale: A narrative journey of the IBD body. USA: Hampton Press.
  17. Defenbaugh, N. L. (2013). Revealing and concealing ill identity: A performance narrative of IBD disclosure. Health Communication, 28(2), 159–169. https://doi.org/10.1080/10410236.2012.666712
  18. Department of Health. (2012). Long-term conditions compendium of information. Retrieved from: https://assets.publishing.service. gov.uk/media/5a7c638340f0b62aff6c154e/dh_134486.pdf
  19. Domingo, C. R., Gerber, N. C., Harris, D., Mamo, L., Pasion, S. G., Rebanal, R. D., & Rosser, S. V. (2022). More service or more advancement: Institutional barriers to academic success for women and women of color faculty at a large public comprehensive minority-serving state university. Journal of Diversity in Higher Education, 15(3), 365–379. https://doi.org/10.1037/dhe0000292
  20. Ellis, C., & Bochner, A. P. (2000). Autoethnography, personal narrative, reflexivity: Researcher as subject. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 733–768). Sage Publications.
  21. Gates, T. G., Beazley, H.,& Davis, C. (2020). Coping with grief, loss, and well-being during a pandemic: A collaborative autoethnography of international educators during COVID-19. International Social Work, 63(6), 782–785. https://doi.org/10.1177/0020872820949622
  22. Goffman, E. (1959). The presentation of self in everyday life. USA: Knopf Doubleday Publishing Group.
  23. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. USA: Prentice-Hall.
  24. Hale, E. D., Radvanski, D. C., & Hassett, A. L. (2015). The man-in-the-moon face: A qualitative study of body image, self-image and medication use in systemic lupus erythematosus. Rheumatology, 54(7), 1220–1225. https://doi.org/10.1093/rheumatology/keu448
  25. Haynes-Baratz, M. C., Bond, M. A., Allen, C. T., Li, Y. L., & Metinyurt, T. (2022). Challenging gendered microaggressions in the academy: A social–ecological analysis of bystander action among faculty. Journal of Diversity in Higher Education, 15(4), 521–535. https://doi.org/10.1037/dhe0000315
  26. Henderson, B.,& Noam Ostrander, R. (2008). Introduction to special issue on disability studies/performance studies. Text and Performance Quarterly, 28(1–2), 1–5. https://doi.org/10.1080/10462930701754267
  27. Hochschild, A. R. (1983). The managed heart: Commercialization of human feeling. USA: University of California Press.
  28. Hughes, E. (1962). Good people and dirty work. Social Problems, 10(1), 3–11. https://doi.org/10.2307/799402
  29. Israel, M., & Hay, I. (2006). Research ethics for social scientists. USA: SAGE Publications.
  30. Janssen, R. (2021). Living with collagenous colitis as a busy academic: Chronic illness and the intersection of age and gender inequality. In N. Brown (Eds.), Lived experiences of Ableism in academia: Strategies for inclusion in higher education (pp. 159–170). Policy Press.
  31. Lapadat, J. C. (2017). Ethics in autoethnography and collaborative autoethnography. Qualitative Inquiry, 23(8), 589–603. https://doi.org/10.1177/1077800417704462
  32. Longhurst, R. (2001). Bodies: Exploring fluid boundaries. UK: Routledge.
  33. Méndez, M. (2013). Autoethnography as a research method: Advantages, limitations and criticisms. Colombian Applied Linguistics Journal, 15(2), 279–287. https://doi.org/10.14483/udistrital.jour.calj.2013.2.a09.
  34. Millen, N., & Walker, C. (2001). Overcoming the stigma of chronic illness: Strategies for normalisation of a ‘spoiled identity’. Health Sociology Review, 10(2), 89–97. https://doi.org/10.5172/hesr.2001.10.2.89
  35. Pifer, M. J., & Baker, V. L. (2014). “It could be just because I’m different”: Otherness and its outcomes in doctoral education. Journal of Diversity in Higher Education, 7(1), 14–30. https://doi.org/10.1037/a0035858
  36. Prock, K. A., Berlin, S., Harold, R. D., & Groden, S. R. (2019). Stories from LGBTQ social work faculty: What is the impact of being “out” in academia? Journal of Gay & Lesbian Social Services, 31(2), 182–201. https://doi.org/10.1080/10538720.2019.1584074
  37. Stone, S. D., Crooks, V. A., & Owen, M. (2013). Going through the back door: Chronically ill academics’ experiences as ‘unexpected workers’. Social Theory & Health, 11, 151–174. https://doi.org/10.1057/sth.2013.1
  38. Tolich, M. (2010). A critique of current practice: Ten foundational guidelines for autoethnographers. Qualitative Health Research, 20(12), 1599–1610. https://doi.org/10.1177/1049732310376076
  39. Travers, C. (2011). Unveiling a reflective diary methodology for exploring the lived experiences of stress and coping. Journal of Vocational Behavior, 79(1), 204–216. https://doi.org/10.1016/j.jvb.2010.11.007
  40. Warnock, D. M. (2016). Paradise lost? Patterns and precarity in working-class academic narratives. Journal of Working-Class Studies, 1(1), 28–44. https://doi.org/10.13001/jwcs.v1i1.6013
  41. Werth, S. (2011). Stigma, stress and emotional labour: Experiences of women with chronic illness at work. In Proceedings of the 25th Conference of the Association of Industrial Relations Academics of Australia and New Zealand.
  42. Wilkinson, M., & Pickard-Smith, K. (2023). Disabled women are significantly under-represented in senior roles within universities. Here’s how – and why – institutions can and should support them better for career progression. Retrieved from: https://www.timeshighereducation.com/campus/howpromote-disabled-women-academia
  43. Wilkinson, S. (2019). The story of Samantha: The teaching performances and inauthenticities of an early career human geography lecturer. Higher Education Research & Development, 38(2), 398–410. https://doi.org/10.1080/07294360.2018.1517731
  44. Wilkinson, S., & Wilkinson, C. (2020). Performing care: Emotion work and ‘dignity work’ - A joint autoethnography of caring for our mum at the end of life. Sociology of Health & Illness, 42(8), 1888–1901. https://doi.org/10.1111/1467-9566.13174

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