Many individuals who have a disability, chronic illness and/or neurodivergence can decide what they disclose, be that whether or not they share that information or how much detail they provide about their conditions and needs (Barnartt, 2010; Kerschbaum et al., 2017). Disclosure statistics available from the Higher Education Statistics Agency in the UK highlight that higher education still lags behind other sectors when it comes to individuals disclosing their disabilities, chronic illnesses and/or neurodivergences (HESA, 2022).

In research I have undertaken over the course of several years (see for example Brown 2021, 2020a, 2020b), I have been able to show that there are largely three trends at play:

1. There are fewer disabled, chronically ill and/or neurodivergent people in academia as a sector than there are in other areas of life and work.
2. Many disabled, chronically ill and/or neurodivergent people drop out at different transition stages, such as at the level from undergraduate studies to postgraduate taught studies, or from postgraduate taught studies to postgraduate research studies, and then again from research studies to contractual positions.
3. Those disabled, chronically ill and/or neurodivergent people that do continue on this trajectory and stay within higher education, are less likely to disclose their conditions.

In reality, disclosure of needs to others is not an easy process for individuals, as they have to come to terms with personal experiences, potentially life-threatening diagnoses and fear of stigmatisation. However, the consequences of non-disclosure are significant – for individuals and the sector, more widely. In my project, ‘Disclosure dances in doctoral education’, I specifically examined how doctoral students navigate those two transition points from postgraduate taught studies to postgraduate research level and to contractual positions. Many research participants were very clear about disclosure being a conscious and strategic choice, where they would tell their immediate supervisor(s), but nobody else, for example, although they themselves highlighted how problematic this specific disclosure is.

‘Disclosure of needs to others is not an easy process for individuals, as they have to come to terms with personal experiences, potentially life-threatening diagnoses and fear of stigmatisation.’

Non-disclosure and isolation

For people with disabilities, chronic illnesses and/or neurodivergences, both disclosing and non-disclosure are linked with a sense of isolation. Through their disclosure, they make themselves different and stand out in ways that they are not necessarily comfortable with. By not-disclosing, however, they feel isolated in their struggles with managing their symptoms and needs alongside their studies.

Non-disclosure and role models

Because so many people with disabilities, chronic illnesses and/or neurodivergences in academia stay hidden and unnoticed, the students follow the footsteps of invisibility and they lack role models. Seeing a STEM (science, technology, engineering and mathematics) scientist in a wheelchair working in a lab, for example, would be enabling and empowering for students, demonstrating that there are true routes through academia available to them.

The vicious circle of non-disclosure

The fewer academics and students who disclose their needs, the less momentum there is for making environments accessible and inclusive as a matter of course because the ‘odd’ adjustment can be put in place as and when needed. In turn, however, being made to stand out leads to even higher levels of non-disclosure. And so we find ourselves trapped in a vicious circle created by non-disclosure.

Non-disclosure is therefore a much more profound issue than merely individuals not sharing their needs and accessibility concerns; it is not just a matter of social justice within education but also a matter of self-preservation of the academy. The more significant the accessibility issues are in higher education, the more likely it is that we will lose a large pool of exciting talent. The academy’s priority therefore has to be the implementation of long-lasting policies and initiatives aimed at encouraging individuals to disclose. To this end, it may be helpful to consider disclosure as a cost–benefit analysis, where institutions and the sector need to revalue the benefits to such an extent that they outweigh the costs: access to support systems, opportunities to apply for special grants, funding of fellowships and more equitable review processes would all be a welcome starting point.

References

Barnartt, S. N. (Ed.). (2010). Disability as a fluid state. Emerald.

Brown, N. (Ed.) (2021). Lived experiences of ableism in academia: Strategies for inclusion in higher education. Policy Press.

Brown, N. (2020a). Disclosure in academia: A sensitive issue. In N. Brown & J. S. Leigh (Eds.), Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education. UCL Press. https://doi.org/10.2307/j.ctv13xprjr.9  

Brown, N. (2020b). Introduction: Theorising ableism in academia. In N. Brown & J. S. Leigh (Eds.), Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education. UCL Press. https://doi.org/10.2307/j.ctv13xprjr.9

Higher Education Statistics Agency [HESA]. (2022). Table 27 – All staff (excluding atypical) by equality characteristics 2014715 to 2020/21. https://www.hesa.ac.uk/data-and-analysis/staff/table-27.

Kerschbaum, S. L., Eisenman, L. T., & Jones, J. M. (Eds.). (2017). Negotiating disability: Disclosure and higher education. University of Michigan Press.