Disability in Higher Education: Investigating Identity, Stigma and Disclosure amongst Academics
Gayle Brewer, Open University Press. ISBN 13-978033552550318. pp 131, published 2022; Price €33.59/ £28.99 Paperback.
Book Review by Alan Hurst
Let me begin by saying right at the start that I enjoyed this book and found it one of the best books on disability and third level education that I have read for years. I guess that most of the readers of the AHEAD Journal will have students as the focus of their work and so perhaps might consider this book as not being crucial to their daily tasks. However, in the past, many of us have been helped in our efforts to improve policy and provision for students in third level education by working with colleagues with disabilities who can act as role models and influential allies in our struggles to promote and secure the inclusion of disabled students. Thus, I think it is important to increase our knowledge about the often-neglected experiences of this group of people. Greater knowledge contributes to our professionalism.
I will structure my comments on a chapter-by-chapter basis and then offer some personal thoughts about why I hold the work in such high esteem. Following an introduction to what follows, the book has five chapters starting with an overview of how disability is represented and the influence of media images. She mentions, for example, Nelson’s six stereotypes: victim/hero/threat/burden/unable to adjust/better off dead.(Nelson 2000) Reference is made to the relative absence of disabled people in the mass media, although taking the example of the UK, one of the most popular television programmes, ‘Strictly Come Dancing’, has included contestants with an impairment in recent seasons (although there might have been others whose impairment is not visible and not disclosed). To counter this, Brewer notes the growth in social media and the participation levels of people with disabilities. Having discussed use of language and of models of disability, the chapter ends with a reminder about research, summarised by the phrase ‘Nothing about us without us’.
The focus of Chapter Two is stigma and discrimination. It heartened me to see the inclusion of the work of Erving Goffman writing so powerfully about this sixty years ago (Goffman 1963) It is good to see too a special focus on schizophrenia and on HIV/AIDS. In considering workplace discrimination, the distinction is made between ‘actual’ and ‘felt’ discrimination. The point is also made that sometimes staff do not request accommodations to avoid drawing attention to themselves and thus prompting some to question competence.
From here it feels natural to consider the cultures and context of third level education, the concern of Chapter Three. Reference is made to the predominance of what has been called ‘neoliberalism’ with its obsession with aspects such as research, income generation and performance metrics in providers of third level education. One way to summarise the changes is to see it as a switch from a collegial model to a managerial one. The corollary of this has been increased surveillance, increased competition and increased performance measurement. On the last mentioned, I was particularly struck by a reference to a Danish proverb: ‘You can’t fatten a pig by measuring it’. The various dimensions of the role of ‘Academic’ are covered: teaching, research, income-generation, publicity for achievements, administration for example, all of which put additional pressure on staff, a group of people already threatened by short term contracts and having to work part-time. All of the above need to be viewed from the perspective of a member of staff with an impairment. So, some of the routine tasks might be especially challenging, for example, visiting students on placement, participation in fieldwork and visits, and attending national and international conferences. Consider the additional time required to plan for these and to ensure that issues such as physical access, transport, availability of support such as interpreters are there when needed. The closing part of the chapter looks at the impact of the COVID pandemic on what were the normal daily activities in third level education.
Chapter Four I see as being of greater importance than those preceding it since it is about ‘Invisible Disabilities and the Decision to Disclose’. Here, we are back into ‘Goffman territory’ with a consideration of the implications for those trying to ‘pass’ as normal and those choosing to disclose, especially since the second alternative is the route to accommodations and support both material and financial. There is the suggestion that factors influencing the decision to disclose include what has gone before, personal psychological state of mind, perceived consequences of disclosure and environmental factors. Types of disclosure are three-fold: confessional (explaining poor performance), pragmatic (need for support and accommodations), and validating (legitimising identity). The closing sections of the chapter return to Goffman and his distinction between ‘the own’ (people with similar impairments and experiences) and ‘the wise’ (those who know well and are part of the life of the individual).
In the following two chapters, the focus is based very much on the feedback from the disabled academics that the author interviewed. Brewer begins by noting that she was able to discuss only with staff who had disclosed, some of whom had an obvious and visible impairment. Hence, the data derived from the interviews might be somewhat under-representative. Despite this caveat, the three main impairments explored in more detail are autism, dyslexia, and mental ill-health. Looking at the first of these, whilst the number of disclosures has increased, actual research is most commonly based on children. One point she notes is that for some staff with autism, there is the need for quiet, non-distracting workspace – open-plan offices and desk-sharing are likely to be unwelcome and unhelpful for them. Other challenging contexts might be work outside the actual classroom (e.g. placement visits) and attendance at and participation in conferences. Regarding dyslexia, again most research has been undertaken in childhood contexts. A key issue is disclosure and what is recorded in this part of the chapter has parallels in the AHEAD Reasonable Accommodations on Practice-based Placements study (Students with Disabilities on Placement AHEAD 2022). Interestingly, if staff do decide to disclose, they can be really helpful to students with dyslexia. However, Brewer quotes from a student nurse encountered in a study by Morris and Turnbull (2006) who said, ‘No one knows about it – I can’t bring myself to say it. I hated to be labelled as having it (dyslexia) I just can’t and I hate it.’ Turning to mental ill-health, the growth in anxiety and depression should come as no surprise given the changed nature of the academic’s roles and responsibilities. The personal accounts of those experiencing difficulties are useful for others. For example, this comment from a study by Campbell (2018),’ I have let everyone down by being weak. My identity is revealed as a fraud… I’m off sick. That’s now part of my identity. The girl who couldn’t cope….The weak one’. This interpretation clearly demonstrates the need to obtain and recognise student feedback in order to take action to alleviate such negative feelings. This chapter ends with a brief discussion of musculoskeletal disabilities, energy-limiting impairments, and Covid 19 after-effects.
The information generated from the interviews forms a central part of the discussion in Chapter Six called ‘Perceptions of Disabled Academics and Disability’. It opens by acknowledging that in recent times student feedback and evaluations have become a key dimension of quality assurance. This can have both positive and negative consequences. Thus, students have been exposed to the same media images as the rest of society and so they might arrive with fixed notions about disabled people. Actually, there is very little research about student perceptions of academic staff with disabilities. Also, there is little evidence of disabled staff having an impact on student evaluations. On the other hand, these colleagues could be valuable role models in terms of disabled students and also in breaking down prejudices amongst the entire student body - but these academics must have chosen to disclose if they are to move the focus away from visible impairments to those that are not seen on first meeting. The author cites Anderson (2006) by way of summing up the situation, ‘Teachers with disabilities offer knowledge through their bodies and experiences that isn’t usually part of the curriculum. Disabled teachers embody pedagogies of justice, interdependence, and respect for differences.’ It is suggested that most academics have disclosed to students, some following a disclosure from a student. The longest section of the chapter presents an exploration of ‘faking it’ and perceived malingering. This ties in with the frequent media stories regarding so-called ‘benefit fraud’. The most impact is on those with unseen impairments and to avoid this, they need to obtain some validation, usually provided by a medical practitioner. What this says about avoiding a medical model of disability is better left unspoken.
The final chapter provides plenty of suggestions about the application of accommodations in a range of situations, for example, the academic role and the increased workload. It is noted that, if staff have to work to deadlines, should they encounter difficulties meeting them they cannot seek extensions in the way in which disabled students can with regard to both coursework and examinations. Regarding promotion, some of the criteria used can often place additional pressure on disabled staff who do not have the personal resource to undertake work additional to what they do on a daily basis, roles such as external examining or journal editing, conference attendance and presenting papers, grant applications and research activities. Take attending conferences for example. A common feature of the programme will often include an informal ‘nibbles and drinks’ reception to allow delegates to meet new people and renew old friendships – lots of circulating and standing around chatting. Reading this book has reignited my awareness of the challenges such events pose for colleagues with impaired hearing/mobility/speech/vision and for others with undisclosed and unseen impairments. Moving on, the discussion turns to accommodations and Universal Design where again the concern has been with disabled students rather than disabled staff. The latter might have to disclose their impairment so that the employer can demonstrate their position regarding meeting their legal obligations but then might also have to face what has been called a ‘hierarchy of conditions’. Some of these are more contested than others, for example, chronic fatigue syndrome. The funding of accommodations has a section to itself and recognises that often a disabled user of special equipment still needs to pay for some services. The closing section brings the situation up-to-date with a consideration of the impact of Covid 19, its potential beneficial outcomes such as remote participation in various activities and online working, although this might also do little for those feeling socially isolated.
Having summarised the content and coverage, it is appropriate now to assess the strengths and shortcomings of the book. Firstly, I like the clear and logical structure and sequencing of the content. Having considered the context, the concern shifts to look at academics with disabilities before closing with suggestions about good practice. Secondly, the book is very ‘reader-friendly’, with each chapter divided into clearly denoted sections. Thirdly, most chapters close with the addition of a ‘Box’ which moves into a particular topic. For example, at the end of the first chapter, the box is about ‘sport and the supercrip stereotype’, at the close of the second the topic is ‘Sexual orientation and stigma’. For me, the most significant box follows Chapter Six and considers the use of simulations as a disability awareness-raising strategy. Fourthly, the experiences of a range of disabled academics are used with a welcome usage of verbatim comments. Fifthly and related to this is the judicious use of references to and quotations from other sources. I mentioned above the Danish proverb, whilst another to imprint itself on my memory is from a disabled member of staff who had not disclosed her dyslexia who said, 'I have a colleague who has been bullied by students for her written English. It’s one of the situations where at the moment she hasn’t got the support, where she’s doing online stuff, and some of her dyslexia comes out and students go ‘Oh, my God, call yourself an academic and you can’t even read and write’. Sixthly, the book is as up-to-date as it can possibly be – witness the frequent references to the COVID pandemic. Finally, there is much in here that provides examples of good practice and guidance on many practical matters, for example meeting the needs of disabled colleagues when undertaking research and planning conferences.
The list of shortcomings is relatively brief. First, I was disappointed with the section headed ‘Conclusion’. This comprises just thirteen lines of text. It does not do justice to the quality of what has gone before. Next, I am not convinced of the need to include at the start a ‘praise page’ which is little more than additional publisher blurb. Finally, the cost of the book seems high and expensive for its size. This could limit its potential to have a positive impact on improving policy and provision.
In her Preface, the author states, ‘This book provides an insight into disability and ableism in higher education, placing particular emphasis on the experiences of academics who are themselves disabled.’ Indeed it does! I recommend this book most highly to the readers of the Journal. I hope that after reading it you will share my enthusiasm for it.
AHEAD (2022) Students with Disabilities on Placement - Guidance on the Provision of Reasonable Accommodations on Practice-based Placements in Professionally Accredited Programmes. Dublin.
Anderson, R.C. (2006) Teaching (with) Disability: Pedagogues of Lived Experience. Journal of Education, Pedagogy and Cultural Studies 28(3/4) pp 367-379.
Campbell, E. (2018) “Reconstructing my identity: an autoethnographic exploration of depression and anxiety in academia” Journal of Organisational Ethnography 7(3) pp 235-246.
Goffman, E. (1963) Notes on the Management of Spoiled Identity. Penguin: Harmondsworth.
Morris, D and Turnbull, P (2006) Clinical experiences of students with dyslexia. Journal of Advanced Nursing 54(2) pp 238-247.
Nelson, J.A. (2000) The media role in building the disability community. Journal of Mass Media Ethics 15(3) pp 180-193.