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.

Access denied: the dark side of prestige

Written by Hannah Gibson 

‘In order for others to [be accommodated], who as beings have a different set of requirements, they would have to push for a modification of the environment. Some have to push to be accommodated. Given how able-bodied privilege comes to structure a world (both a physical and social world) then people will disabilities have to push to have their own requirements met.’ (Sara Ahmed)

Spaces. Each one requires a different physical and intellectual attentiveness. Perhaps you have never thought about how much energy it will take to get from one space to another, how your body responds when faced with slight inclines or uneven paths. The lighting of a space, whether there is a clear trajectory from the doorway to a seat. The space itself, how it seems inoffensive yet from the outside looking in, certain spaces are porous, where the walls, floor, ceiling have come to assume a certain type of body will fill that space.

Some weeks ago, there was a public engagement session that I wanted to attend in the Department of Sociology at The University of Cambridge. Around the same week, I was looking forward to a lecture on intersectionality by Sara Ahmed. Both events were scheduled to take place in the same seminar room, but I could not go because on those days, it was too difficult to walk up or down stairs. I live with complex and rare multi-system invisible illnesses, and the challenges I face, particularly within society and academia are what disable me (thus, I identify myself as a disabled person). Living with invisible conditions means that I look physically capable and ‘healthy.’ In this blog post, I want to create (or contribute to) a dialogue about the salient and ignored issues related to being disabled (both visibly and invisibly) within an academic institution, access (or lack of) to spaces, and what messages this reproduces.

I feel honoured to be a Visiting Scholar at Reprosoc* in the Sociology Department at The University of Cambridge. My family are proud. It is a privilege. Speaking out in any way that isn’t positive about a prestigious institution feels wrong – I should be thankful, right? A girl who didn’t attend high school and fought her way through her undergraduate and graduate school now sits at a desk at one of the world’s most renowned universities, and I am raising questions that may make people uncomfortable. But, as Sara Ahmed would say, you have to push against the tide and push against others walking in the opposite direction to be accommodated. As for the notion of privilege and prestige, they work to silence me, trying to erase my discomfort before I begin to give shape to the words and dare to speak them. However my positionality as a temporary visitor is perhaps what gives me the confidence to be honest. My goal is simple: to raise awareness so that long-term, disabled students, staff, and other visiting scholars have access to access any room or area that able-bodied people have.

Although there are archaic and small elevators (note the word ‘small’ as you read on) in some buildings, there are a number of areas that have none. The first time I was presented with stairs to the aforementioned seminar room, I walked up them. The next few times I couldn’t due to pain and fatigue. I do a lot physically with my limitations already, so forcing my body to ascend stairs and endure pain as I sit through a lecture or seminar is not productive. I have found that having incredibly supportive colleagues and mentors is not enough. They cannot erase the stairs that must be climbed or make the paved streets straighter. It is illogical that given how inaccessible rooms and buildings are in a country that has so many laws about being inclusive (see The Equality Act 2010).

At an individual level, not being able to participate fully in the both the academic and social aspects at an institution is isolating and pushes me, as a disabled person, further into the periphery of university life. This is not an unfamiliar feeling: to sit and give people my attention when the pain sears through my body, being too exhausted but wanting to attend something important, swallowing medicine to get through the day. The difference between this ‘normal’ and my current locale is that the physical barriers become much less about my in/abilities and more about the spaces that I am barred from, where the hurdles are concrete steps, uneven pavements and the way this has been allowed to continue into 2017. It is in the spaces found outside of the rooms beyond my physical reach that I stand (often alone) and feel defeated. It is infuriating but also incredibly sad. Why does an institution that has so much to offer is so exclusionary?

Without extra challenges, as a sick graduate student, it’s a David and Goliath battle, a weak body pitted against a myriad of challenges that form one giant monster. Pain, fatigue, deadlines, nausea, weak immune system, dysfunctional autonomic system, rest to fit in around all of this, and not forgetting to eat. It’s a constant roundabout of things to do, to cope with, and to juggle. Add on the normal pressures of completing a PhD (and particularly in anthropology where your body is your main tool as you undertake intense fieldwork – data collection – to understand the lives of your participants), I have a challenging schedule. Having environmental barriers further debilitates and narrows one’s options to participate in the very world in which one continually fights to carve out a space for oneself. Sadly, to be at Cambridge has meant more about adapting to an able-bodied world and less about engaging with my research.

Aptly put by this blogger, ‘when having to constantly seek out whether there is building access [to events], you’re having to foreground yourself as someone disabled before you get to present yourself as someone who is a badass researcher. Psychologically, achieving the inverse of this is hard enough with a temperamental body. Additional reasons to reinforce this lexical ordering of identity just aren’t welcome, especially when they’re avoidable if the access information was just made public.’ Indeed, this is a problem for many disabled people. We are in 2017, a time where one would hope accessibility issues would be minor. I could spend my time here unseen. If buildings were more accessible, I would not have to voice the concerns here. However, I know that if I were here full-time I would be reluctant to step forward. This makes it more of an imperative that I advocate and highlight the need for the university to be more inclusive.

The life of an academic (graduate, post-doc, research associate, lecturer) demands nothing but commitment and hours of input in order to survive within the academic setting. If healthy individuals feel the pressure, how are disabled people to speak of our struggles without inviting a spotlight that questions whether we deserve a place at the table to begin with? And why are people generally uneasy when the topic of disability is brought up? One thought: the systemic inequalities and oppression disabled people experience within institutions highlights how uncomfortable able-bodied people are with the concept of (any kind of) vulnerability. Disability studies have shown that one of the reasons able bodied people struggle to engage in dialogue about this topic is because anyone could become disabled and require help. Further, talk of limitations muddies the image of climbing the academic ladder or striving to be the best you. Thus invisible (and literal in the sense of lack of access) boundaries are created between the ‘able’ and the ‘dis-abled,’ and we become (alongside other oppressed minority groups) the Other (Ahmed, 2017 also writes to this).

At a wider level, a disabled person cannot study sociology at The University of Cambridge. There are specific spaces that it is not possible for disabled students to access. I’m here to ask, what message does this reproduce? In the first instance, certain bodies are more welcome than others. Yes there is a disability resource centre at the University, which I have no doubt provides help to those needing it, but I have to ask: where are all the disabled people? According to a study done in 2015, 1 in 10 students in tertiary education identify as disabled. Why am I seeing and feeling a disregard for those who inhabit this world differently to how able bodied persons might? Discarded before they are even acknowledged, the very smallness of the space that we are being given (if that) feels like a cursory attempt at inclusivity that fails. And the lack of access that I seek to this space but often cannot inhabit tells me something. To block, to restrict access, to continue to oppress, to ignore, speaks of what value is given to disabled people. And in turn it is reproducing the message that they are inferior to able-bodied individuals. To be a disabled person, it is always in proximity to the ‘abled’. Indeed, a disabled body creates the illusion that the able-bodied is the superior one.

Back to spaces. When I’m well enough, I walk around some of the streets close to my office. It is an incredibly beautiful town. Yet on bad health days, I have not felt like I belong. However, encouraged by my colleagues I have found space (for example in my office) that is inclusive, welcoming and non-judgemental. However beyond this, rooms can turn into spaces to fear, and ultimately avoid. Each space resides in beautiful buildings, but I have become smaller and voiceless. Until now. A colleague said something that struck a chord with me recently: don’t think you aren’t worthy of being here. Push the boundaries. Push to make them more flexible. And she is right. Waiting for others to realise anything can be futile. The best way I know how to push against the tide is through writing, experimenting and challenging inexcusable discrimination with the my own truth in order to challenge the norm so that those placed outside of it are not ignored.

*To note, this is not about my colleagues at Reprosoc, or anyone else that I have the pleasure to know in the Sociology Department. They make life a bit easier.

About the Author

Hannah is a PhD Candidate at Victoria University of Wellington and a Visiting Scholar at The University of Cambridge, UK.

You have MS

Written by Stephanie Zihms 

After 10 months of tingly arms & legs, a bout of optic neuritis, unexplained tiredness and brain fogs, as well as doubting my own sanity – I was finally diagnosed with MS (Multiple Sclerosis). Even though this was not entirely unexpected it was still a shock and at the same time a huge relief. My response turned out to be ‘full on research mode’. I searched the web high and low for information and anything related to MS – funnily enough my parents did the same – must be a family trait. Probably for a good month or so, I was in a haze of information, feelings, uncertainties, insecurities, strength – or to put it bluntly I was one big mess on the inside but very functional day-to-day.

After my family and some close friends, my supervisor was the next person I told, mostly because she was there when I had no clue what was going on and it just felt right to tell her. I also pretty quickly decided to tell HR because I wanted them to know in case things got worse unexpectedly. I recently came across this blog post from Heather on The Mighty. She also tweets as Dizzy the Donkey which is worth a follow. The first thing that struck me was that she decided not to tell people because of the fear of being judged – I had exactly the same fear of being judged or perceived as lazy, slacking or not working as hard, which was one of the reasons why I decided to be somewhat open at work about my MS diagnosis. I told close colleagues and office mates and others if it came up due to people noticing changes; most notably, I had to explain my new diet to my lunch club colleagues. This was followed by waves of "but if I admit that I have to change my working hours or ask for other adjustments, I would be considered not as good an academic". I have never really been a 24/7 academic and always valued my weekends and time off but this was never visible at work. Now, with adjusted hours, 1 day a week working from home and days where I looked like s*** it’s a bit more obvious that I’m not 100% fit all the time.

The first thing my supervisor told me was “now you have a reason to take care of yourself”, which is kind of sad because we all should take of ourselves in whatever form that happens. But for me this means I have to be more sensible about how I plan my work, how I set deadlines, what activities I agree to etc. To be fair, at the beginning that didn’t seem to be too big an issue. I agreed to work 1 day from home and adjust my hours as needed; on a good day work a bit more, on a bad day leave early. Outside of work, this meant changing my diet and exercise regime, as well as starting my day with a 10 minute stretch (which I actually manage most mornings).

It took a field trip in mid-February to realise that I have to treat a good day as a normal day and not work more. We went to a geological site that I was excited to show a visiting researcher from Brazil. I had been feeling great – diet and exercise seemed to be working so off we went. The day was very cold, windy and we ended up on site for 6 hours with only a break for lunch. That evening, I felt tired but not necessarily more than after similar days like this – however I couldn’t get any heat in my legs. In hindsight I now know this was a tell-tale sign that something was not right. I ended up off work for 2 days due to severe fatigue. Well done me! By Friday I started to feel better again and another week later I think I am fully back to “normal”. This was quite a big shock to my system and it really highlighted some other issues creeping up – particularly the realisation of "that’s it now – You have MS – life is not going to the same"! For a wee while it felt as if this meant Life is also going to be rubbish. This is, of course, not true but at that time it felt like it.

During these pretty shitty weeks of feeling super low, the counselling sessions really helped. These were offered to me from my employer after I told them about the diagnosis. It took me a while to go and I had to reach a low point where I didn't know what else to do to get me to go. I had my first session on 8th February, about 3 months after my diagnosis. I have now had 4 sessions. They have helped so much and I am glad that they were available to me from work because I had access quickly. HR set up the initial contact and told me to call them if and when I needed it – after calling them I had an appointment 3 days later. Since I did pick up the phone at a low point, this quick access was so important because the first 3 weeks in February were particularly difficult and if I had not had counselling, it could probably have been a lot worse. Unfortunately, I have to say that this, together with an occupational health assessment and reasonable adjustments, is all that my university offered – tick box requirements. There is a disability service but this is aimed at students, there is access to assistive technology – but this is not widely advertised – and again does not really help with the impact on mental health, feeling of belonging and emotional aspects of a recent diagnosis. Through contacts, I found out that there is a type of peer support group but this was not publicised in a way that I knew about it when I needed it. I also found out that we don’t have a working group for disabled or chronically ill staff or a representative on any working group related to staff. I don’t think this is ok and I want to make sure that members of staff that go through something similar in the future have these services available and are aware that they exist. This can only really happen through openness about my own diagnosis and a little bit of lobbying.

Through some existing connections at university I should be able to get some of these things rolling and I’m hoping to get more involved. A key factor in deciding to be open and get more involved has been the Chronically Academic network. This was one of the first forums or networks I joined and I felt very welcome and supported.

About the Author

Image of Stephanie on fieldwork
overlooking a rural landscape

Stephanie Zihms is currently working as a postdoc in Carbonate Geomechanics in the Institute of Petroleum Engineering at Heriot-Watt University. Her research tries to understand why rocks deform the way they do and what controls this deformation – crystal size, crystal shape, pore size or pore shape? Or is it the mineralogy or how the rocks formed in the first place? By deforming different rocks under different conditions in the lab she is trying to find some answers. This research and the findings are relevant for a range of subsurface processes like hydrocarbon extraction, geothermal energy production or Carbon Capture & Storage applications. Basically anytime a liquid or gas is put into the subsurface or extracted from the subsurface the conditions change and the rocks will response to this change – by understanding what controls this response within the rocks (grains , pores) we can predict the behaviour in the subsurface. Stephanie was diagnosed with MS in November 2016. To read more about her life as a Chronically Academic also check out her blog: stephaniezihms.wordpress.com.

Disability Accommodations

Written by Jennifer Mankoff 

We have kindly been given permission to repost this from 

https://pghlyme.org/2012/12/03/disability-accommodations/

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.

An important implication of the ADA is that employers need to make “reasonable accommodations” for their disabled employees. This specifically means (from the official ADA website): “Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.” The key factor here is to define essential job functions and the accommodations needed to achieve them without causing undue burden to the employer.

But what does this mean for Lyme disease? To answer that question, I turned to the Job Accommodation Network (JAN), a nonprofit site that provides “free, expert, and confidential guidance on workplace accommodations and disability employment issues.” JAN has a Lyme disease information page, where they provide specific recommendations for accommodations such as a flexible work schedule, work at home options, periodic rest breaks, and reduced stress. There is also a great deal of useful ADA information on Anapsid’s site including a very practical list of ADA-related government organizations, what sort of help they might provide, and where to contact them.

I also turned to resources for other fatigue-related, often invisible illnesses. For example, there is a wonderful article on how several people successfully managed Lupus accommodations at www.lupus.org and JAN has a Chronic Fatigue article that includes several specific examples of situations and accommodations.

The question remains, then — what accommodations, if any are reasonable for me. However, in my job, the question is only partly what accommodations one should ask for. It seems to be equally about who pays for the accommodation. Within the university hierarchy, that could be the university, the department, or the faculty member him or herself — all three have “work” funds that they raise in various ways. The fund raising burden is highest for the smallest unit (the faculty member), but a faculty member has a great deal of freedom in deciding what accommodations to pay for if paying him or herself. In any case, it’s not clear that payment responsibility is specifically covered by the ADA, and I have been able to find nothing written about the topic so far.

That aside, the job I’m in is luckily very flexible. The thing that is least flexible is teaching, and the question of what support is appropriate or necessary for teaching is something I’ve been thinking a lot about. The other thing that is true of my job is that there are sometimes large spikes in work load (for a few weeks due to a conference deadline, for a whole semester given a very difficult teaching assignment, etc.). It seems to me that managing (or limiting) spikes in my workload load is something that would make things much easier. Another aspect of my illness that can be difficult is managing low energy points. If I limit my work to my normal capacity when feeling unwell, then I can provide steady but lower effort to my university. If I work to my normal capacity when feeling well, then I accomplish more but the weeks when I am feeling unwell become very difficult. The accommodations needed in either case shift as well — an overall lower workload vs a support structure that can fill in the gaps in the difficult weeks.

A last observation about this process: It may seem clean cut when I describe this in terms of the moral/legal world (human rights), but in reality the process is complex and messy just as any interpersonal negotiation may be, especially in an organization the size of my department. My university is large, but any changes I request in my job will most directly affect myself and the people around me. And the person-to-person side of this is complicated by the invisible and uneven nature of my illness.

About the Author

Photo of the author

Dr. Jennifer Mankoff is a Professor in the Human Computer Interaction Institute at Carnegie Mellon University. She earned her B.A. at Oberlin College and her Ph.D. in Computer Science at the Georgia Institute of Technology. Her research embodies a human-centered perspective on data-driven applications. Her goal is to combine empirical methods with technological innovation to construct middleware (tools and processes) that can enable the creation of impactful data-driven applications. Example application areas include sensing and influencing energy saving behavior, web interfaces for individuals with chronic illness, and assistive technologies for people with disabilities. She helped found the sustainable-chi group (sustainable-chi@googlegroups.com). Her research has been supported by Google Inc., the Intel Corporation, IBM, Hewlett-Packard, Microsoft Corporation, and the National Science Foundation. She was awarded the Sloan Fellowship and the IBM Faculty Fellowship.