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.

Disability in the Graduate Assistant's Contract

Written by Alyssa Hillary

We have kindly been given permission to repost this from:

http://yesthattoo.blogspot.co.uk/2016/09/disability-in-graduate-assistants.html

Two years ago, I suggested to my graduate assistants union that disability and accommodations should be covered in our contracts.

I could understand why it hadn't been there before: 

1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability. 
2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

But for a few reasons, I thought it needed to be there:

1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts). There being such a group is a whole lot more welcoming for folks who find disability issues relevant than there not being any groups like that is!

And one more reason that occurs to me now but I didn't think of at the time:

• Graduate assistants are both students and staff. Students handle accommodations through Disability Services for Students. Faculty and staff handle accommodations through Human Resources. Where do graduate assistants go, since we're both? That being unclear would be a barrier for anyone who has issues with bureaucracy. So would an answer of "Do both, haha," because that means dealing with two different offices for one issue.

Well. The executive board for the union agreed, and none of the union members objected. They pushed to get disability language into the contract, beyond the list of thing they're not supposed to discriminate against us for. (And disability definitely belongs on that list.)

Contract negotiations happened. While the university negotiators tend not to like adding information that's already in other places to the contract or even referencing those other places in the contract, they did add a line about disability accommodations.

4.5 Disability Accommodations– The Administration and GAU shall adhere to Federal and State laws and regulations as they apply to treatment and accommodation of persons with disabilities. Requests for accommodations shall be submitted to the Office of Disabilities for Students.

Am I totally satisfied with that? Not completely. I think it's progress, since there wasn't any information about accommodations before. I know that contracts are all about basic compliance and legal language. I've still got the same issue with "will follow Federal and State law" here that I do with it on syllabus statements and generally everywhere.

About the Author

Alyssa is a PhD student in neuroscience, an Autistic activist, and a disability studies scholar. They're interested in assistive technology that's not about imitating the standard ways of doing/being, and which addresses the mismatch between a person's abilities and environment rather than considering the problem to lie entirely within the person. Their art features on the covers of Typed Words, Loud Voices and The Real Experts: Readings for Parents of Autistic Children.

Taking time off your PhD for recovery

Written by Daniel Rough

At some point in our PhD lives, nearly all of us experience feelings of self-doubt. We may feel that we aren't 'good enough' to be doing a PhD. We might feel like despite our best efforts, our progress has hit a standstill. The pressures of academic life can end up taking their toll on our mental health. Indeed, an article in The Guardian reported that there is a 'culture of acceptance' of mental health issues pervading academia (you can read this article here).

Cycle showing that lack of progress leads to stress and anxiety which in turn leads to lack of focus and a further lack of progress.

One part reads: "...I see students and academics who view the researcher development service as unnecessary. I see students who imagine using our services as an "admission of defeat". To come to us, is to announce that you are not a perfect researcher."

For too long, I felt this way. I felt that admitting I was struggling was to admit that I was incapable, that I was weak, that I wasn't cut out for this. "Everyone else seems to be doing fine, what's wrong with me!? I'm obviously not working hard enough" I'd tell myself again and again. I tried to ignore the fact that starving my body was starving my brain, but I knew I was caught in a vicious cycle where work was affecting my health, and health was affecting my work.

Taking a leave of absence was a lifesaving decision. Since returning to university, I've felt much happier, and able to manage my life better. I'd like to reflect a bit on the factors that helped my leave of absence to go well.

#1: Keeping busy

One thing that hit me when I went off on leave, is that I made the transition from overworking myself to suddenly dropping all work altogether. This took a lot of adjustment, and my anxiety shifted from "I've got too much work to do" to "I'm wasting my time being unproductive!" Despite being off to relax, it was having the opposite effect, aaaargh!

I recommend setting yourself a project of some sort. It can be anything that has you put your mind to something. As humans, we naturally thrive on the satisfaction of work (admittedly some more than others) and have a need to feel useful. Using my example, I would strongly recommend starting a blog! Being able to chart my progress, while exercising my creativity, gave me a sense of purpose.

Of course, don't go starting your PhD work again while you're off on leave. However, acquiring knowledge that could be helpful for your research and career is also a productive path to go down. Whether it be learning a new programming language, learning how to write in a certain style, or even learning how to organise your life goals.

#2: Staying connected

In the months leading up to my leave of absence, I became socially isolated. I worked hours that would minimise the chance of meeting anyone in the office. I would ignore any social opportunities, if anyone asked, I would reply "I have some work to finish off". The PhD is generally a sole undertaking; you work on it yourself and are responsible for the outcomes. That means when we stop communicating with others, stop maintaining a social life, PhDs can be very lonely indeed.

When off on leave, I had my family there all the time, who I could talk to about anything, positive or negative. Eventually I made an effort to meet up with friends, too. In time I realised the importance of staying connected with people. I'm not suggesting for a minute that this is easy. Feelings of disconnectedness and anxiety can make social interaction terrifying.

Take it slow. Even just sharing a post on social media or having a chat about the weather with the cashier in Tesco, learning to socialise again was a big step in my recovery.

#3: Enjoying hobbies

I feel that it's important to give yourself a sense of purpose while you're off on leave. Remember though, you're taking a break from work! One of the best opportunities that leave affords is time to pursue hobbies and interests. When you return from leave, maintaining a work-life balance is essential. Do you have anything you used to love doing that you've had to sacrifice? Or maybe it's a good time to find a new passion!

When we focus on nothing but work, it can be like putting all our eggs in one basket. If work is going well, then it's easy to be positive and motivated. However, when research hits a stumbling block, we all need something at the end of the day to make us feel better. Take your mind off work by going for a walk, reading a novel, baking a cake, whatever you enjoy! I wouldn't discount Netflix and chill either.

#4: Embracing change

Image containing the saying that "The secret of change is to focus all of your energy, not on fighting the old, but on building the new...".

At university, I had a routine, which became somewhat of a ritual. I felt extreme discomfort and anxiety in deviating from this routine. In returning to live with my family, I was no longer a slave to this routine. This took some getting used to, and initially it was quite frightening to not have those daily rituals.

In time, however, I learnt that I could cope without them. Routines are great and can keep us focused, but when we get tied into ritualistic behaviours, they can be damaging. Taking time off on leave is an opportunity to test yourself. Do something a bit different, shake up your routine. Again this is something I would take slowly, but it can be as simple as taking a different walk or having something new for lunch!

All in all

Taking leave may seem like a 'last resort' but try not to see it that way. Looking after your health is your top priority. With time to dedicate to your mental health, you can come back stronger and more focused. If a football player breaks their leg, they don't insist on playing as normal, they take time off to get better. Your mental health is no different!

About the Author

Photograph of the author

My name is Daniel, and over the last year I've been blogging about my recovery from anorexia at roughrecoveryblog.wordpress.com I want to offer my experiences, insights, struggles and achievements on my path to recovery. In doing so, my goal is to give hope and assurance to those in a similar situation. I’m 25, Scottish, and a PhD student at the University of St Andrews. Last year I took 6 months off my PhD to focus on anorexia recovery, during which I started my blog. Please have a look at this post on why I decided to take this time off. When I'm not researching or blogging, baking is my passion, and if I get fed up with the PhD, my fallback plan is to open a bakery 😃

Taking medical Leave: What I would tell myself now

Written by Stephanie

Let me start by saying I have no professional qualifications whatsoever to give anyone advice as to making a decision about taking medical leave. So I won’t. What I will do is tell you what I would have told myself when I was faced with this very decision in my own career, not so long ago.

First, here’s the brief backstory of how I found myself at the point of medical leave.

I was in the second year of my PhD. Anyone from the outside looking in would have said things were going very well. I had completed and passed my qualifying exam (called various things in different country contexts, but essentially the big exam in which you defend your research proposal). This meant I had the green light to go ahead and actually start doing the research I planned for so long and was excited about. I had publications in the works and a slew of upcoming conferences. I was working as a teaching assistant for a course on a subject matter I loved.

But one morning a disastrous thought floated through my head and it was downhill from there. I didn’t know what was happening at the time, but later was diagnosed with obsessive-compulsive disorder, or OCD. You can read more about my experience here: https://thesecretillness.com/2015/09/01/stephanie-33-ontario-canada/. All this to say, I reached a point where I was pretty much debilitated, but I was actually able to keep up with work (for a while), and even still do it well. I think that’s one of our best guises in academia—we can keep up appearances and sustain unhealthy practices dressed up as success—but that’s another story. I probably could have kept plugging away like this, miserably, for some time. But I realized that if I were to actually get better, I needed to dedicate my attention and energy to treatment. Treatment alone needed to be my priority. This could not happen in the (off)balance of my PhD life. Of course, knowing what you need to do and actually doing it are two different things and I wrestled with the decision to a medical leave of absence from my PhD program. In the end I took a 4-month leave and it was the best decision of my life.

Looking back now, here are a few things I would have told myself at that difficult moment in time that might have eased my angst about taking the leap into medical leave.

If you can’t be happy and healthy enough to enjoy your professional success, it’s just not worth it.

Sure, in academia there are tough moments when we all grin and bear it and our work-life balance may get temporarily out of whack. But that’s not what I’m talking about here. When I was in the deepest, darkest grips of my OCD, I received the incredible news that I had been awarded an extremely competitive multi-year federal doctoral research award. This was something I had worked so hard for. This was an achievement that could not only step up my career trajectory, but it would make my life so much easier for the next few years. My funding was secure. No more applying for grants and the award included money for research expenses, meaning no more conferences out of my own pocket! When I got this news, I should have been jumping for joy. Instead, it was like…thud. In fact, it almost made me feel worse. I felt like I didn’t deserve it. I was so consumed by the doom of my OCD fears I could not even enjoy and savour this moment of success. And we all know that these can be few and far between in academia! That’s when I knew how far gone I was—that I couldn’t take pleasure in an accomplishment that I had worked so hard for and that was so important to me. It was at that point that I knew I could not continue to just push ahead in my PhD. I had to get well again or there was no point in continuing. If I couldn’t take pleasure in such an achievement, what was I doing in this PhD?

Things can and will wait.

Academic timelines are brutal. Often everything has a sense of urgency. We are an overworked bunch, for sure. The truth is 4 months, 1 year, whatever it is, will not make that much of a difference, if any, in the long run and the investment in your health will pay off with much greater returns. Yes, I’m scheduled now to finish my PhD 4 months later than I would have if I had been healthy. But the reality for me is that if I hadn’t taken leave for treatment I may not have finished at all and now that I am back to work, I can tell you that the leave did not have a significant impact on my trajectory. There were no critical opportunities in that time that I missed out on—even if there were, I know there would have been others in the future. All of the publications I had in the works still made their way out the door. My career went on.

Medical leave is not time off.

As academics we are notorious for not giving ourselves a break, and when we do we’re often ridden with guilt that we should be working but it is important to remember that medical leave is not time off. It is not a break. Medical leave has an objective—and that is to improve and attend to your health, whatever your needs may be. For me, it provided me the dedicated time I needed to focus on treatment. I was finally able to see a psychiatrist for assessment and diagnosis. I had the time I needed to read and educate myself about my condition. And the kind of treatment I underwent (ironically!) had plenty of homework. Whether your condition is physical or psychological, it is important to remember that the purpose of medical leave is to get better. And that is not something we should allow ourselves feel guilty about!

Don’t half-ass it.

For a time, I toyed with the idea of not taking a formal leave of absence and just sort of “taking it easy” over the summer. But thankfully a wise mentor said to me, “I know you, and you won’t stop working or feel like you should be working if you don’t take a formal leave” and she was right. I can see now that I would not have properly prioritized my treatment if I didn’t make it formal. Maybe this is also a by-product of our academic formalities and habit self-induced guilt—formalizing my leave gave it the legitimacy I needed to allow myself to prioritize it. As an academic I was so used to giving 110% to everything, but I almost thought about giving myself a half-assed leave!

Don’t let the red tape scare you.

There is paperwork but it is doable and you might have to be your own advocate to navigate some of it or perhaps you have a supervisor or partner who can help. In my case, I did have to do some manoeuvring through the bureaucracy, and this was not without some stress and uncertainty. For example, my university initially told me they would withhold my funding during my leave. But I reviewed the policies of the funding agency granting my scholarship and learned they actually had policy for paid medical leave, which superseded my university’s policy. I then had to present this information back to my university. I also had to request leave both from my university and from the granting agency. In the end, it all got sorted out and my university was actually very supportive, which I give them a lot of credit for. All this to say, don’t let any red tape deter you. It’s just part and parcel of the ridiculousness of some university bureaucracies. And as academics we’re used to that.

It’s nobody’s business if you don’t want it to be.

Yes, you need to communicate with your supervisor and the appropriate administration. But actually, very few people need to know, if at all, that you are taking medical leave. And really no one other than probably one high-level administrator who actually receives the confidential note from your doctor needs to know the reason for your leave. I was very open with some people about my leave, and didn’t even bother telling others. You should not feel pressure to disclose anything you’re not comfortable with.

***

I can tell you in no uncertain terms now that if I didn’t take leave and treat my OCD I may have left academia altogether. This realization helped me to cement a new-found commitment to put my wellness first. Everything else stems from that. I’m pleased to say that having returned to my PhD post-treatment, I’ve been able to more than simply re-connect with the passion for my research that brought me there in the first place—I’ve been able to experience what it’s like to be healthy AND pursue a PhD I’m passionate about. That’s a powerful combination. I have more passion to go around. I take pleasure in discovery. And I even enjoy some of my successes. I now engage with my career on my terms. And those terms prioritize my OCD recovery and living well.

About me

Stephanie is a PhD Candidate at a University in Ontario.