The lived experience of female academics with long-term conditions impacting on energy levels and/or cognitive function,2023 Brewer

Sly Saint

Senior Member (Voting Rights)
Abstract
The present study contributes to an expanding literature investigating the systemic and structural issues that serve to disadvantage disabled academics. Individual interviews were conducted with ten female academics, each with a long-term condition impacting on energy levels and/or cognitive function. Interviews, informed by the researcher’s lived experience as a female academic with an energy limiting condition, were subjected to Interpretative Phenomenological Analysis. Six themes were identified. These were (i) Identity and the concept of disability, (ii) Dependence and vulnerability, (iii) Legitimacy, convention, and conformity, (iv) workload, intensification, and marketisation, (v) Insecurity, competition, and comparison, and (vi) Perception, othering, and isolation. Findings demonstrate that those with different diagnoses report similar lived experiences, especially in relation to such fundamental issues as identity, disclosure, and isolation. A range of recommendations are provided to improve education practice and policy.

Points of interest
  • The present study explored the lived experience of female academics, each with a long-term health condition impacting on energy levels and/or cognitive function.

  • Individual interviews were conducted and subjected to Interpretative Phenomenological Analysis.

  • Six themes were identified. These were (i) Identity and the concept of disability, (ii) Dependence and vulnerability, (iii) Legitimacy, convention, and conformity, (iv) Workload, intensification, and marketisation, (v) Insecurity, competition, and comparison, and (vi) Perception, othering, and isolation.

  • The focus on symptom profiles rather than diagnostic labels highlights shared barriers to progression, counters difficulties with the current diagnostic system, and enables the development of practical recommendations to enhance practice and policy.



    https://www.tandfonline.com/doi/full/10.1080/09687599.2023.2287412
 
To some extent, reluctance to identify as disabled reflected academics’ perception that they were ‘not disabled enough’. This is consistent with narrow representations of disability (i.e. typically focusing on mobility or sensory impairments) that do not capture the lived experience of disability, the complexity of long-term health conditions, and the heterogeneity of disability (Shakespeare Citation2006). It is important that future representations of disability and subsequent disability policies and practices are more inclusive and acknowledge the broad range of conditions that exist. In particular, a greater recognition of invisible conditions is required. Of course, feeling ‘not disabled enough’ may be further exacerbated by the liminality and unpredictability of some conditions. Greater recognition of chronic illness and disability is required, especially in relation to unpredictable and fluctuating conditions, in order to effectively support disabled academics.

Those interviewed often reported that some conditions were perceived to be more acceptable, important, or legitimate than others. Previous research indicates that attitudes towards disabled people vary according to condition type (e.g. Deal Citation2003, Citation2006; Thomas Citation2000). For example, those viewed as ‘responsible’ for their condition are often perceived as less deserving of assistance and support (Cobb and de Chabert Citation2002). The hierarchy of disability that exists may have important consequences for the provision of support and accommodations. For example, in one study, those with ‘physical disabilities or mental handicaps’ were perceived to be more deserving of government assistance than those with ‘chronic or debilitating illness’ or those with ‘mental health or psychiatric disability’ (Freeze et al. Citation1999).
 
One is constantly told one is not "disabled enough". I had good grades as a student, that meant I should not need accomodations. I struggled to have the university understand there were things I simply couldn't do all the time despite being able to do them once in a while, and what eventually helped was to have a crash in front of a supervisor that had to help me walk... suddenly I was believed and things just sorted themselves out despite me using the exact same words to explain my needs as when the university would not bother.
 
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