Designing a Disabled and Ill Researchers’ Network

Written by Kay Guccione (Researcher Mentoring Consultant) and founder members of the University of Sheffield Disabled & Ill Researchers’ Network: Chris Donaldson (PGR in the Medical School), Peter Dory (PGR in English), and Isobel Williams (post-doc in Psychology).

Image of the Disabled & Ill
Researchers' Network logo which
is a blue square with the name
of the network and a plus sign on
a black circular background.

Nobody embarks on a PhD thinking it’s going to be easy, but disability and illness can make researching a thesis that little bit more daunting, exhausting or isolating. The Disabled & Ill Researchers’ Network is a group for postgraduate and postdoctoral researchers who are managing PhD study alongside a disability, impairment, injury, or physical, psychological, and/or mental health condition.

"The biggest issue I face in my research is fatigue management. It's never easy to judge what might send me into a long, unproductive slump. I'm lucky enough to have understanding supervisors, but there's always the worry that I might slip too far behind."

The Network launched at the University of Sheffield in March 2018. It’s one of three new peer-networks for researchers at Sheffield (see also: the Emotionally Demanding Research Network and the Parent PGR Network). These new researcher communities are a part of our Researcher Wellbeing strategy, combining lots of initiatives that work across different researcher groups.

At Sheffield we use a 'Google Community' website but you could make use of any online space that works for you. A Facebook group, a Wordpress site, an email mailing list, a Slack channel or any other intranet or messaging system you prefer. Through our online space, and face to face events, the group aims to provide a forum to discuss problems, share strategies, and campaign for greater awareness of researcher disability and illness and its impact on study.

“I had perhaps naively expected all members of staff at a university to be ‘disability aware’ – particularly those who work in patient-facing departments and therefore work with disability and illness for a living. That was not the case, and I came across some ignorant-bordering-on-discriminatory attitudes. I was, however, lucky to have understanding supervisors and PGR leads who allowed me to work in the way that was right for me, and fought my corner when necessary.”

In our first meeting we started with an open forum to surface some of the big discussions, we compared experiences, how they matched with the expectations for study, and the university processes and systems that support this, or make life more difficult.

Hot topics ranged from the very cultural, to the very practical:

• Patchy awareness in departments of the needs of disabled and ill researchers to manage their own time and energy — this can lead to overstepped boundaries. e.g. treating disabled researchers as if they are ‘lazy’ if they decline opportunities or say no to them, or using power relationships to force participation, or insist on longer working hours.
• Awareness of how physical health can impact on mental health. If a disclosed disability is ‘physical’ then a PhD researcher may find themselves are excluded from support for mental health.
• Low awareness of key contacts who can support Disabled & Ill Researchers’: e.g. Departmental Disability Liaison Officers.
• Application for support and communication processes can vary between different services, academic departments, health services, and key contacts meaning that they can take a long time and errors can be made, or information lost.
• The number of Accessible workspaces on campus is not adequate or well mapped.
• Taking a Leave of Absence (suspending PhD study for a period of time) — which is particularly pertinent to ill and disabled researchers:
• Financial exclusion from taking a Leave of Absence due to it being an unfunded period of leave.
• How to best organise and manage a phased return from a Leave of Absence
• Supervisor(s) awareness of Leave of Absence processes, and their permission or encouragement to use the process.
• The ‘current climate’ of research (deadlines, submission times, pressure) and the difficulty of taking time out.
• A Leave of Absence isn’t a ‘cure’ and we shouldn’t expect that researchers will return ‘fixed’ and without ongoing issues to manage.

"I think my biggest issue has been adapting the skills I've learnt to a research environment - particularly for students with disabilities and SpLDs, I don't think your degree prepares you for how to manage your time, how to balance your different responsibilities. I've also struggled with a great deal of people not understanding how my disabilities/SpLDs affect my learning and how I carry out my PhD. Finally, when I've needed time away, I don't feel as if I've been able to take it - I simply wouldn't be able to afford to live, as you lose funding for time you take on leave of absence."

To make sure that the fledgling network would grow and have strategic impact, the group decided that our immediate priorities were to develop:

• An online space where we can all share information, resources, ask questions and support each other;
• Partnerships to influence strategic processes and policies related to research staff and students and ensure representation;
• A series of blogs sharing the stories and experiences of disabled and ill researchers (here’s the link to the growing series) that can be put to good use at researcher inductions and pre-recruitment;
• A guide for PhD study with a Disability or Illness, my excellent colleague Chris Donaldson has joined me to co-author this study guide;
• A campaign related to academic and professional services staff disability awareness training;
• A disability/illness disclosure pledge campaign — encouraging postgraduate researchers to disclose disabilities and illnesses and have open conversations with their supervisors about the best way to manage their health and study.

"Ideally, I'd like to see the initial disclosure be the beginning and end of all bureaucracy surrounding disability and illness for PGR students (well, all students really) - no having to worry about justifying extra provisions or leaves of absence, piling stress onto an already stressful undertaking.”

“The big change I want to see implemented is paid sick leave for PGRs from all funders. It's not always possible to financially support yourself when you're unwell, especially if you're a student from a lower socioeconomic background.”

“The fact that I feel ‘lucky’ to have the support I did, says something about the current state of disability awareness in higher education. Everyone should have the support I did. I think we can get closer to that by training staff around how they should be supporting disabled students. We should also be fostering a culture where students feel they can have open conversations around disability and reasonable adjustments, trusting that the outcomes of those conversations will be routinely actioned by the university.”

We believe that networks, led by researchers, and that respond to the real needs of researchers are the most important way to support self-management, peer-learning and healthy relationships with work and study. These networks must have resources though if they are to create change and build user-centred processes, including support staff time, and senior staff champions who will listen and amplify their voice.

About the Author

This image is a portrait photo
of Kay Guccione with
various framed artworks
in the background.

Dr Kay Guccione is a Researcher Developer, with specific interests in the role of mentoring and supervision relationships in enabling doctoral learning. She has recently published two funded pieces of research into Trust Building in the research environment, an empirical study looking at the Value of the Doctorate, and books on Enhancing Researcher Development, and on Thesis Writing. This year she was awarded a National Teaching Fellowship for leadership in doctoral and researcher education.

Reasonable adjustments, Access to Work and disabled staff

Written by Wendy Merchant and Stephen D’Evelyn 

We are two disabled members of staff at a UK university, both involved in an ESRC funded research project called ‘Getting Things Changed’. In our research we are trying to understand the way in which social practices can disable people, and how we can build on that understanding to question and to change practices which get stuck. Our particular strand of this work focuses on the academy itself, since we know that universities are rife with problems for disabled staff and students, and we are of course implicated in those practices. In this blog post, we pose the question: is ‘Access to Work’ the solution for disabled employees? ‘Access to Work’ is the name of a UK government funded scheme which claims to support disabled people to stay in work by “providing practical and financial support” (pg 1, 2017). In theory, costs for such support are divided between the employer and the Department for Work and Pensions (DWP).

In the context of our research within universities, we have found that Access to Work is certainly not a bed of roses. The experience of disabled staff within the University navigating the scheme in order to obtain materials, resources and adaptations to buildings, is collectively identified as problematic by disabled staff at the University where we work. Neither is its availability nor the range of resources or support that it covers widely publicised to disabled staff. For instance, one of us is a woman, with various long-term conditions, working as a Research Associate on an ESRC funded project (‘Getting Things Changed’) and was unaware that Access to Work could fund a job coach to help her at work or could fund counselling for staff with mental health conditions (DWP 2017).

Disabled university staff we interviewed as part of our research described how they were left to navigate the lengthy and complex process alone, with little or no support from their employer. Instead, individual staff used the Staff Disability Forum (SDF) which disabled staff had instituted within our university as a group for peer support and collective action for positive change. This enabled them to share their difficulties and gain advice and support from each other. The SDF has become a hub where disabled staff share their experiences and give each other advice, in particular about the existence of and access to the “Access to Work” scheme. Several staff shared that they did not know what the scheme covered until another disabled staff member told them:

“…I actually got more advice and help from members of the Disabled Staff Forum. Because I didn't even know what I could apply for from some of those things, or what was relevant. What's the employer's obligation? Like, I didn't even know that. You know, what is the employer's obligation? What can I ask for from Access to Work? And so I did draw on the experience of people, other people, in order to sort of decipher that...”

As Sang (2017) suggests, such forums can, and do, act to facilitate the full integration of disabled staff into the structure of their organisation. However, by leaving disabled staff members to organise themselves and support each other to navigate through these systems themselves, there is a danger that the institution reinforces the notion of the disabled staff member as a “problem.” Although peer support is vital and at the heart of good practice, it can also generate problems, since it can reinforce the experience of only finding support from other disabled people, rather than enacting equality among persons with any variety of physical, mental health, and learning profiles. Forcing disabled staff to rely heavily if not exclusively on their own user-led groups, due to the lack of integrated support across an organisation, also reproduces and reinforces the structure of ableism—value determined by achievement—which could be said to be inherently discriminatory and disadvantageous to disabled people. A more equitable approach would recognise that all employees require a differentiated approach to their employment.

The organisation of the University into Faculties, Schools and Centres and the division of its budget further complicates the process. For example, if a disabled staff member is employed on a research contract, whose budget covers the University’s contribution to resources or adaptations? Disabled staff members reported their reliance upon having a supportive, informed and responsive line manager to support them through the process. Once the “Access to Work” grant has been made it becomes the responsibility of the individual staff member to administer their claim. This may involve managing the timesheets of support workers, submitting monthly claims and dealing with lengthy queries from the DWP regarding these claims. One disabled staff member suggested that:

“…I spend about three days a week – three full-time days a week – arranging my own travel, booking it all, researching it, filing my university claims – because everything has to be claimed through the university first – and then the Access to Work claim. Each one is a three-stage process…”

Another reported that their application was still being processed after 2 years.

These experiences raise so many questions for universities who champion policies that seek to “widen participation” and “include” disabled students and staff alike. Similar to the experience in the U.S. described by Franke et al. (2012), in UK higher education there is a discrepancy in the provision of support for disabled staff at universities compared with disabled students. However, looking at the experience of both disabled staff and disabled students within the University there is a shared sense of having to navigate organisational systems alone.

What is clear is that the University is not designed for disabled staff or students to easily fit in. This is a wider issue that is reflective of the ableist ideals of the neo-liberal society in which universities operate. Solutions instead seem to lie in the direction of firstly helping decision-makers become more aware of the value of identifying and making the most of all staff members’ potential, and secondly educating staff about the basic principles of equality which actually make for a more flexible and creative workforce. Finally, our project suggests that the most important thing is to shift models of value away from simply medical diagnoses of difference to a social model (Oliver 2013). A medical model focuses on the individual member of staff as a potential problem to be fixed, a rather prevalent attitude we have found in the university. By contrast, a social model approach would turn attention instead onto the structural issues and exclusionary practices which have become embedded and ‘naturalised’ in universities, in such a way that we often do not even perceive them. It is only by uncovering and questioning these practices that organisations may begin to tackle the power imbalances between senior and junior staff. Higher Education Institutions ought, we suggest, to be at the forefront of helping turn this vision into reality, helping transform social structures through greater understanding. To do this we need to continue the work of research, practical policy development, and improvement of organisational processes by testing policy against lived experience and revising it. In addition, we must consistently make the case for the incalculable value of the full person in all his or her variety to a society and a world facing challenges like never before.

References:

Department for Work and Pensions (2017). Access to Work. Department for Work and Pensions. Available from: https://www.gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers. Accessed 24/8/2017.

Franke, A.H., Berube, M.F., O’Neil, R.M., Kurland, J.E. (2012). Accommodating Faculty members who have a Disability. Report from Sub-Committee of Academic Freedom and Tenure http://www.ok-ahead.org/facultywdis.pdf

Oliver, M. (2013). The social model of disability: thirty years on. Disability & Society, 28(7): 1024-26.

Sang, K. (2017). Disability and Academic careers. Herriot Watt University: Edinburgh

About the Author

Wendy is a Research Associate in the School for Policy Studies at Bristol University and also a disability activist. Stephen is a disability activist and a scholar of Latin language and literature and Medieval Studies.