Image shows a decorative plate, with one segment (like a piece of pizza) decorated to show strawberries. The text reads 19% - nearly 1 in every five (people have a disability)
Inclusivity, Sustainability

Amplifying disabled student voices

This ‘Inclusivity Friday’ blog comes from Dr Julie Hulme, Reader in Psychology at Keele University, and Communications Officer for the Committee of the Association for National Teaching Fellows (CANTF). Here she shares her reflections on inclusion of disabled students*, and working with students as researchers. For more information, please contact Julie directly; you can also follow her on Twitter @JulieH_Psyc.

Photo of Dr Julie Hulme on Keele Uni campus, wearing a red dress

The higher education literature is full of ‘attainment gap’ statistics for diverse demographic groups, and disabled students are no exception. However, ‘disabled students’ are diverse in themselves, and the experiences of students with different disabilities are not all equal. Working with a team of student researchers (final year project students, MSc dissertation students, MSc research apprentices, paid student interns, PhD students), I have focused for the last few years on trying to understand more about the reasons for disadvantage, and on engaging students as co-researchers to explore the factors that underpin these ‘gaps’, for students with different types of disability or needs. Our work has focused on a community of practice model (Lave & Wenger, 1991), in which we work towards more inclusive policies and practices, and empower disabled students to support development of a positive social identity as well as research skills.

Working with students as researchers

Not all of the students working with me identify as disabled, but quite a high proportion do, and for non-disabled students who get involved, there is a real benefit of learning about disability and inclusion from disabled students themselves. This enables peer learning, but also promotes important employability skills and awareness of inclusivity and diversity. As a group, we agree to work with mutual respect, professionalism, and to use inclusive methods, and supervision occurs sometimes in groups for community learning, and sometimes one-to-one to allow personalized coaching and discussion of sensitive topics. I also learn a lot from the student researchers, not only from their data but from their own lived experiences, especially around disability.

At the moment, I have a whole range of student-led projects running, and over recent years we’ve researched chronic illnesses, autism, ADHD, visual impairment, endometriosis, mobility impairments, dyslexia, mental ill health…you name it! We have several papers in preparation, with students taking lead author place, and one paper was recently published (Hamilton, Hulme, & Harrison, 2021). Stacey Lyons (PhD candidate) and myself also published a WonkHE blog on disability policy.

Findings

Our findings are rich and informative, across the programme of research. Generally (but not exclusively), we have used qualitative methods, to enable us to amplify the voices of disabled students. Disclosure processes are particularly challenging – partly because not all students who legally qualify to claim disability identify as disabled (e.g. autistic students identify as neurodiverse rather than disabled; people with endometriosis may recognise a health condition but not a disability), and sometimes students feel that they are ‘not disabled enough’ to claim adjustments. The latter may be especially true for students with fluctuating health conditions such as chronic fatigue syndrome, where ‘good days’ and ‘bad days’ lead them to try to cope only on the good days. Disabled Students Allowance and associated support require all sorts of bureaucratic work that creates a barrier in itself. Additionally, some staff within universities create barriers, through stigma, through ‘policing’ adjustments to try and create fairness for non-disabled students, and through reducing the identity of a disabled student solely to their disability, rather than recognising other aspects of who they are. Finally, managing all of the bureaucracy and discussions around whether or not you are entitled to reasonable adjustments, especially when you’ve already proven that you are, creates an exhausting burden of work for students who are already disadvantaged. Some students choose not to put themselves through that, and to go without the support to which they are legally entitled, and that they genuinely need. And we wonder why there might be attainment gaps?

Being more inclusive

So what can we do to truly include disabled students? Our findings suggest that there are things we can all do, even on quite a small scale (although if you’re a university leader reading this, do feel free to get in touch for a chat!):

  • Ask students if they have any support needs – don’t always ask them if they are ‘disabled’ as the label doesn’t fit comfortably for everyone;
  • Listen to students and trust them – they are the experts in their own experience and in what they need. Disabled students want to be treated fairly, not to ‘game the system’;
  • Anticipate issues around inclusion in your course materials. This can be as simple as including Alt Text for images on Powerpoint, or always making a recording of your classes available for students who could not attend. You can also explore the excellent work around Universal Design for Learning (check out De Montfort University’s site for a good starting place, or see if you can find an opportunity to talk to Kevin Merry);
  • Call out non-inclusive practices, and be a supportive ally for disabled students who may be struggling to be heard.

In general, my advice is to value diversity in your classrooms, and to find ways to ensure that diverse student voices are heard. Based on our research, students in minoritised groups, including disabled students, can feel stigmatized and disempowered, and asking for help creates work that just adds to the burden. Please be supportive, approachable, and put on your best listening ears!

*In our research, we have asked students about their preferences for person-first language (student with a disability) or identity-first language (disabled student), and whilst there is no consensus, a majority have preferred identity-first language. We also find that this language is more commonly used within the social model of disability, which aligns more closely with our values than the medical model. As a result, I have used ‘disabled student’ throughout this article.

Our outputs

 Lyons, S.M. & Hulme, J.A. (June, 2021). Why are so many students locked out of their education? WonkHE (18/06/2021).

Hamilton, P., Hulme, J.A. & Harrison, E.D. (2021). Experiences of higher education students with chronic illnesses. Disability and Society. DOI: 10.1080/09687599.2021.1907549.

Hulme, J.A. (2021). Social identity and disability in the classroom. Changing States of Mind Podcast, September 2021.

Hulme, J.A., Hamilton, P., Keeling-Ball, C., & Crabb, E. (2021). Inclusive learning: Engaging student voices. GlobalMindED expert talk, 28th May 2021 (from 27 minutes).

Hulme, J.A., Hamilton, P.R., Lyons, S,M., Crabb, E., Cascone, C., Davis, S., Fahey, C., Holland, B., Hussain, M., & Knight, E. (in press). Students as researchers: Amplifying disabled student voices. TASO case study.

Hulme, J.A., Hamilton, P.R., Lyons, S.M., Keeling Ball, C. & Harrison, E.D. (2021). Experiences of disabled students in higher education: a social psychological perspective on educational inclusion. BPS: Psychology of Education Section, annual conference, Sept 2021.

Further reading

Lave, J., & Wenger, E. (1991). Situated learning: Legitimate peripheral participation. Cambridge University Press.

Mercer-Mapstone, L., Dvorakova, S. L., Matthews, K. E., Abbot, S., Cheng, B., Felten, P., Knorr, K., Marquis, E., Shammas, R., & Swaim, K. (2017). A systematic literature review of students as partners in higher education. International Journal for Students as Partners, 1 (1). https://doi.org/10.15173/ijsap.v1i1.3119.

Walkington, H. (2015). Students as researchers. York: Higher Education Academy.

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