Coping strategies for disabled academics: self-acceptance and collective solidarity

Written by Marion 

Being a disabled academic is not easy. We frequently require considerably more time and effort to achieve the same as other academics and find some things which seem to be trivial for non-disabled colleagues almost impossible. We may need to achieve a lot more than others for the same recognition. We also frequently come up against a lack of understanding or even hostility when we ask for adjustments to overcome the barriers we face. It is very easy to become dispirited and to think all the difficulties are your fault and feel inadequate and incapable.

The first strategy is to recognise that you are not to blame and that academia is not particularly friendly and sometimes outright rejecting of disabled people. The social model of disability, though by no means perfect, is useful here. It puts the problem and responsibility firmly on society with its infrastructural, social and attitudinal barriers and not the individual and their impairments. It is the lack of large print books, ramps and lifts not the fact you are partially sighted or use a wheelchair that are the problem.

The second strategy is achieving change both for yourself as an individual and more widely for other disabled academics through collective action with other disabled and non-disabled people. There is strength in numbers and working with others reduces the risk of victimisation. This should include joining a trade union. UCU (the University and College Union) in the UK, which also admits (postgraduate) students. Other useful organisations (in the UK) include Disabled People Against the Cuts which is campaigning, for instance, to remove the various hurdles to disabled people getting the benefits they should be entitled to.

In most countries there is legislation about adjustments for disabled people. In the UK there is relatively strong legislation, but no sanctions for not implementing it. While the right to adjustments in the UK is limited by considerations of their ‘reasonableness’, in practice most universities and research institutes are large enough and have enough resources for this not to be an issue. It is useful to encourage your trade union branch to negotiate a policy on reasonable adjustments with your employer. This should include reasonable time limits so that adjustments are put in place quickly and central responsibility for payment to prevent individual departments or schools objecting on the grounds of cost. It should also include disability leave, for instance for medical and other appointments related to your disability, getting a guide dog, learning to use new technology or time off due to changes in your condition. For many disabled academics excessive workloads are a particular barrier and working the nominal 35-38 hour week rather than the 50-90 hour week frequently expected could make a real difference.

If you require reasonable adjustments, you should involve your trade union in negotiating them, and therefore need to be a member. Despite their legal obligations, academic employers are not always helpful and trade union support can help to change this. It is also useful to know about financial support. In the UK Access to Work has been called the best kept secret. It covers, for instance, support workers, additional equipment, adaptations to equipment, fares to work if you cannot use public transport and disability awareness training for colleagues, though the employer might be required to pay a contribution.

The third strategy is talking and exchanging experiences with other disabled academics by electronic media as well as face to face. This can be very helpful in finding out what adjustments, if any, they have and which ones they have found useful, as well as any good practice in their institutions and campaigning strategies that have and have not worked. This can help you determine what additional adjustments might be useful to you, as well as what to campaign for in your institution and how to go about it. Drawing attention to any good practice at competing institutions can often be useful. Talking to other disabled academics can be very important in breaking down isolation and feelings of inadequacy and blame and helping you realise that any problems you are experiencing have structural not personal causes. Talking in confidence to people who understand what you are going through can help you survive when things go wrong.

A fourth coping strategy is recognising your strengths. We all have them, as well of course as weaknesses. The creativity and adaptations we have developed to overcome the barriers we face are in themselves strengths and some of us may have particularly creative ways of thinking and working and/or find easy things which most non-disabled people struggle with. However, when things become difficult it is easy to forget your strengths and creativity and all the positive qualities that enabled you to overcome all the barriers, hoops and hurdles to be accepted into academia. It is easy to fall into a deep hole and feel totally inadequate. It can even be useful to write down your strengths and your achievements at a time when things are going reasonably well, so that you can refer to them in the more difficult times.

The final strategy is keeping a sense of humour, being nice to yourself and not expecting the impossible, or at least not all the time. It is frustrating to have to accept that there are things you need help with or struggle with, particularly when non-disabled people seem to sail through. At these times it is useful to consider your strengths and the times you have helped other people, as well as recognising that the difficulties are due to barriers to disabled people not your inadequacy. Keeping your ability to laugh at things, including difficulties and the pomposity or obnoxiousness of colleagues can be helpful. And the last laugh will be on us, by staying in there and being successful academics despite all the difficulties.

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.

Improving access on campus

Written by Katherine Deane 

I work at the University of East Anglia (UEA) in Norwich, UK. Based in the School of Health Sciences, I’m a Senior Lecturer in Research, working with people to improve their management of long-term conditions. I’m also a wheelchair user.

In the 1960s UEA’s campus was designed with the intent of creating a sense of community. Unfortunately, back in the ‘60s, people with disabilities were not considered to be a usual part of the university’s community. So our campus was built without implementing the principles of universal design and included inherent barriers to access.

I joined UEA in 2009. As my own disability progressed and I needed to use a wheelchair to get around, I hit many of these barriers. Some were physical – heavy doors, which put me at risk of dislocating my shoulder again; some were attitudinal, such as requiring my department to spend an entire year’s budget excess to power-up key doors (that made me real popular). When I started to try and advise my university on the design of new buildings, I was met with condescension, incomprehension, and conflicting priorities. I was usually ignored and told it wasn’t that important an issue. When I suggested some new heavy doors to seminar rooms should be powered-up, I was told this wasn’t a “green” option. It was a very frustrating time. Whilst I was getting some personal accommodations, I could see new building and refurbishments being constructed with yet more access barriers built in.

Then we got a new Vice-chancellor, Professor David Richardson. In his first days as VC he held an open meeting with staff. I sat at the front of the room in my wheelchair. I challenged him by saying that even new buildings on campus were not accessible, and that UEA wasn’t using its in-house expertise to make them so. He invited me to have coffee with him in one of these new buildings, where I demonstrated the problems I had getting around a brand new building that had had millions spent on it. He thought this was unacceptable, so he asked me to help set up the Access All Areas Team. I wrote the terms of reference for the group, a key priority being that anyone with a disability – staff or student – could attend meetings and inform the decisions of the group.

We took the existing jobs list which was created from the mandatory accessibility audit. The legislative standard for access in buildings (Schedule M) is minimal – if you have a step-free, powered front door and a disabled toilet, you’ve pretty much met the standard. While the existing audit met this standard, we added a lot of jobs that are extra to that standard. We have an annual central budget of £300,000, but we have over 100 buildings on campus, and a single powered door can cost £15,000 to buy and install. If we only addressed our highest priority items, this would cost over £1 million.

We reprioritised the job list. We prioritised safety and being able to get around the campus. So we encouraged the Fire Safety Team to buy evacuation chairs. In the event of a fire, someone with a mobility impairment can sit in an evacuation chair and be rolled safely down the stairs by a fire warden. This made many more teaching spaces accessible. We reprogrammed some of our newer lifts so they can now be used in the event of fire, making more of our rooms fully accessible for those who can’t get out of their wheelchair and into an evacuation chair. We have installed 162 powered doors in the last three years. These were prioritised as front doors, then corridor doors, then teaching space doors. Public areas were given top priority, followed by student areas and then staff areas. A quarter of a million pounds was spent on a new fire lift to ensure that the students’ union is fully accessible. We also have more fully accessible teaching rooms, accessible toilets, ramps, better signs, etc.

We have created guidelines for architects, explaining how we want all future buildings to be designed. These guidelines follow the principles of universal design, so our new buildings will work for our entire community. We are aiming to build the most accessible science laboratories in the UK, which will include a changing place – which is a disabled toilet with a bench and hoist to allow people to be changed with dignity. In fact, we have established a policy that all new buildings and major refurbishments will install a changing place.

We held our first Disabled Access Day in March of this year, celebrating our access improvements, and we are now moving on to address attitudinal barriers. We are working to improve the experience of students with disabilities by improving the knowledge and attitudes of the students’ union’s societies and sport clubs. They are receiving mental health first aid training from MHFA England and I’m teaching a course in disability confidence.

External bodies have noticed our expertise and we are starting to advise charities, councils, and service providers about improving accessibility and disability awareness. We are aiming not just for an accessible campus, but one that sits within an accessible community, welcoming to everyone.

We have changed university policy at the highest level. It is now part of the Corporate Plan that the campus is to be “accessible for all”. Today we have nearly 1500 students on our campus and 12% of them have disabilities – a 50% increase over the last 10 years. Diversity has long been identified as leading to greater commercial success. Disabled people improve our university’s diversity and so our potential for success. Having a disability means that people develop many skills such as problem solving, time and energy management, and communication skills. We think these skills are hugely valuable to our university community. We believe that if the barriers to participation are removed, then people with disabilities can demonstrate their brilliance. We want all our students to be brilliant. We know our job is not yet complete. We have come a long way, but we have further to go before we achieve our aim of a campus that is accessible to all.

If you would like a copy of our Access Guide, or would like me to speak to your institution about the value of improving accessibility, please email me on k.deane@uea.ac.uk.

About the Author

Photograph of Katherine,
who is Caucasian with short brown
hair, smiling in tinted blue glasses.

Dr Katherine Deane is a Senior Lecturer in Research at the University of East Anglia, Norwich. UK. She works with people with long term conditions to research the best way to manage them. She is also interested in disability and the built environment and is working to improve campus accessibility in particular. She has a number of long term conditions herself and is a wheelchair user – which gives her insight that just can’t be gotten any other way. She is a self-confessed geek and is raising a geek son alongside her geek husband.

The Fog

Written by Ian 

Trigger warning - mention of suicidal thoughts.

Cutting through the fog is what I needed to do.

The lone scholar myth persists and is still the model of an academic. Individual achievement and “genius” is what the system is geared to reward. The relentless academic tournament where only a few “win” is exhausting and takes a toll on mental health, especially when things aren’t healthily competitive, but hyper-competitive as they are now.

I bought into the lone “genius” scholar model. Probably both consciously and subconsciously. Academia can be isolating and has been for me.

My internal dialog has an outsize influence. It has the credibility of a scientist working to falsify any positive idea I might have. The negative, harsh voice is one I would never apply to anyone else. Connecting to others can be challenging partly because depressive mood is not something I want to spread. However, luckily, I do have a few close friends—whom I would take a bullet for—to open up to, although none of whom I speak with enough.

There’s pain in the fog; a longing for light to cut through or for me to find a way to part it, if only temporarily.

At its thickest, there are two solutions to dealing with the fog. Waiting for the fog to abate, even partially. And there have been times when it feels oppressive and functionally no different from being dead. Suicidal thoughts crept in. I never had means to act on these thoughts, and had one motivation to not carry through: those good friends and family. I would wish to get hit by a bus or have some other fatal accident befall me.

Having these thoughts obviously didn’t help my work.

The fog thickens in times of uncertainty.

I’ve had to come back from that oppressive fog that began six years ago, when I nearly didn’t go on. That was a time I somehow waited out the worst. A time when taking any steps, any actions, seemed futile.

Coming back from that has been a big accomplishment, and I feel shows strength. All through this I kept going, kept learning, and was kind and patient with myself. I found new ways of connecting to people, mainly through Twitter. I started talking openly about depression and mental illness, particularly as it affects academics. I started writing about science too, beyond the technical writing, by guest writing on other blogs. I’m learning to be an editor. I’ve decided I want to step away from the lab bench, which has recently happened. As of this writing, I don’t have anything full time lined up. This latest uncertainty is a test of the network I have built up of close friends and acquaintances, and a test of my ability to go after new opportunities and reach through the fog to ask for help and connect to the wider world. How much will the fog close in this time?

Depression, even when well managed and apparently in the background, seems likely to be with me the rest of my life. The fog can thin and even disappear for a time, but never seems far away. Though even when it’s away, some of the habits developed in the fog’s isolation remain.

I fear stepping into another situation like academia. My next career step is one where I hope I can still further science, education, critical thinking, and the public’s connection to stories of science. Ultimately I hope it’s a career that’s better for my mental health than academia has been, by allowing me to connect more.

There are systemic and cultural changes to academia that can and should be called for like truly preparing PhDs and postdocs for careers beyond the tenure track. But for individuals coping with depression or another mental illness, I encourage them to find someone outside the fog to talk to. To build a support network (like Chronically Academic) of close friends/family and acquaintances, one at a time. Starting with a therapist is fine too. Medications may help lift the fog enough to feel and act normally as well. Resilience is easier when there are supportive people that are visible and accessible. That may include your advisor and other mentors—always build up a network of more than one mentor. Mentors can be anyone that positively influences you or your learning and having people to go to for specific things makes you less isolated and I believe learning from others, or just learning new ways of thinking, can help treat depression (it’s not *that* simple, but it has helped).

Navigating through life with a fog of depression over the brain isn’t easy, but it can also make those managing depression mentally tough and more resilient than may be apparent to even them.

About the Author

Ian is a plant scientist, science writer, and editor who recently transitioned out of academia. His science writing can be seen on his blog, The Quiet Branches. He can be found on Twitter at @IHStreet.

Reflections on being awarded tenure as a woman with kids and a disability / chronic illness

Written by Holly Witteman 

We have kindly been given permission to reproduce this from Holly's blog, where you can read the full article.

There is no universal experience. In my individual experience, a good partner can make the ‘with kids’ part much easier but the ‘and a disability / chronic illness’ part remains tough. Support helps, but no one else can ever do the daily, relentless work of keeping myself alive in a world and career that isn’t always well-structured for staying healthy. The things that have worked well for me have been: (1) being flexible geographically, even at a cost to my family, (2) being extra disciplined about working hard whenever I can to balance out the times when I can’t, (3) using a calendar, not a To Do list, for planning my work, (4) writing constantly, and (5) having full drafts of grants ready 6-8 weeks ahead of deadline for rounds of pre-submission review. It also gives me hope for the future of science and research to (6) use my position to work to improve the system so that research and researchers don’t continue to be held back by barriers that have nothing to do with the quality of one’s work. This effort may or may not help me, but I am determined that it will help others. I am glad not to be alone in these efforts, and I invite anyone who isn’t already involved in such efforts to join in. Especially if you are an academic in Canada, please read this book.

In November, my application for tenure and promotion was approved. June 1, my rank went from Assistant Professor (professeure adjointe at my French-speaking institution) to Associate Professor (professeure agrégée), a bigger deal than I ever understood before I became a professor. This means that the university at which I am a professor has more of a commitment to me, and I to it. I will still be reviewed annually and need to continue to work hard, especially if I want to continue doing work that is funded by competitive grants, but this provides a higher level of job security than I had before. It means, essentially, that I cannot be fired without cause.

It has been a long road to get here, and the road doesn’t end here. My colleague Dr. Brian Zikmund-Fisher once told me, “Getting tenure is like winning a pie-eating contest in which the prize is more pie.” I have already found this to be true. But it’s a good time to take stock.

I originally started writing this for myself. I write for myself a lot. It is how I sort through my thoughts. In this case, those thoughts were about how I got here, what has gone well for me that I should keep doing, what has gone less well for me that I should stop doing, and what else I can do to help improve the system. I read something recently that really resonated with me and so I decided to share this post in case any of what I’ve written might be helpful to others, especially any others like me. (Those others will have to be people who can make it through many, many paragraphs. Scroll down towards the bottom if you just want my list of things that have helped me.)

I have two kids and have spent nearly all my life living with type 1 diabetes, a time-consuming autoimmune chronic illness classed as a disability. My kids are 10 and 5 years old. My diabetes is 34 years old. It took me quite a few of those 34 years to identify as disabled, a period of time I now recognize as being marked by my own internalized ableism that took some time to address, a growing awareness of how much I still have to learn about other forms of disability, and fear. When I say internalized ableism, put plainly, I mean that didn’t want to identify as disabled because I saw it as a negative attribute rather than just an attribute. It took me a while to deal with that. My fear comes from being afraid of having my ability to do my work impeded by ableism. I’m having a very successful career so far. I’m thrilled to be able to do research that I hope will help many people. I love doing the work I do. I love solving problems, answering research questions, and being able to support trainees in their paths toward their career goals. I don’t want that to stop for any reason, but I especially don’t want it to stop because people who have power over my career may be prejudiced.

My fears are well-founded. Academia is a competitive, reputation-based business, reputation is determined by people, people shape and are shaped by fundamentally unequal social structures, and many people also have individual biases. Individual biases may be conscious or unconscious, against groups of others or against groups of which we are members. There are many randomized controlled trials and well-analyzed observational studies in which the data support what people from underrepresented groups have long said: when you are a member of one of these groups, you have to be extra good to get an even chance. (For those who are curious, here is an excellent annotated bibliography on gender bias and other biases in academia. I also linked to a number of studies in this editorial and you may also wish to use search engines and academic databases just like you would for any other academic topic.) 

The effects of four such biases in academic research in Canada are most easily apparent in statistics for the Canada Research Chairs program, a prestigious salary award program that was required to set targets for equity after a court settlement. Canada Research Chairs pay whole salaries or portions of salaries of professors and thus, are used as recruiting tools and/or budget line adjustment tools by universities. It’s up to each university to nominate people for the chairs they have been allocated. They may nominate professors already appointed or they may recruit new professors.  

The idea of having these targets is to help ensure that known biases in academia don’t prevent qualified candidates from being nominated. These targets are achievable, not aspirational. They reflect realistic, even low, proportions within the available pool of candidates in academia. All of the targets are well under than the associated proportions in the general population. In Canada, including Indigenous nations, women represent 50% of the population, visible minorities (a Canadian term for people of colour) represent 22%, Indigenous peoples represent 4.6%, and disabled people represent about 14% of the population aged 15 years or older. For context, in the US, 19% of the population have a disability. In Australia the figure is 18%. In France, the statistic is 18%, with 80% of those being invisible. In the UK, 16% of working aged adults are disabled. Countries don’t all have the exact same definitions of disability but it’s clear that in all countries, there are a lot of people who face different kinds of barriers.

The fact that the Canada Research Chairs program isn’t achieving easy targets suggests strongly that the nominations processes as a whole are unfortunately biased, most likely in subtle ways that may be hard to identify in any single decision. This means we, as a group, are likely failing to hire and/or nominate excellent candidates. Data below are from the Canada Research Chairs’ Program Statistics, using their nomenclature. They only report single categories, no combinations. In other words, as Dr. Malinda Smith notes, there is no intersectional presentation. In statistical terms, this is like looking at main effects but not interactions, even though you know that interactions are likely to matter.

Canadian universities have had trouble with all four targets but they failed most spectacularly in nominating disabled people, so much so that the target was lowered. Among the people I know in academia in Canada who advocate for leveling the playing field for everyone, they often bring up issues of sexism, sometimes racism, sometimes colonialism, but rarely ableism. (There are also other dimensions that get less attention in academia; e.g., gender identity, sexual orientation, socio-economic background, and others.)

About the Author

Holly Witteman, PhD, is an Associate Professor in the Department of Family & Emergency Medicine, Université Laval (Laval University), Quebec City, Canada. Quebec City is unceded traditional territory of the Abenaki and Wabenaki Confederacy and the Wolastoqiyik (Maliseet) people. Dr. Witteman directs the research unit within the Faculty of Medicine’s Office of Education and Professional Development. She is also a scientist at the Research Centre of the CHU de Québec-Université Laval, at the new Institute of Primary Care Research affiliated with Laval University, and an Affiliate Investigator at the Ottawa Hospital Research Institute, Ottawa, Canada, unceded traditional Algonquin territory. With an interdisciplinary background in human factors engineering, human-computer interaction, and decision sciences, her research is about the design and evaluation of digital and other media in health decision making. She specializes in human-computer interaction in health education, risk communication and decision making, including design methods to support broad, inclusive user-centredness and patient-centeredness. Her work as Principal Investigator has been funded by the Fonds de recherche du Québec – Santé (FRQS), the Patient-Centered Outcomes Research Institute (PCORI, United States), the Canada Foundation for Innovation (CFI), and the Canadian Institutes of Health Research (CIHR).

Breaking the Stigma

Written by Juan Pablo Ruiz 

#OktoSay: Let’s Talk Mental Health in Academia

About a month ago, Head’s Together launched their #OktoSay campaign to destigmatize mental health in the UK. Around the same time, a study done in Belgium was published that showed that “one in two PhD students suffered from psychological distress, while one in three were at risk of a common psychiatric disorder.” As soon as it was published, I had three people send me the article. It seemed that, at least in my network, I had become the go-to whenever this type of news showed up. This isn’t surprising given that a year ago, I founded my blog and resource, Labmosphere.com, where one of our core pillars is addressing mental health issues in academia.

Dark and ironic then, that those messages went ignored because I was at the time dealing with crippling levels of anxiety and, for the first time in my life, depression.

When I started my blog, I had just finished taking a free positive psychology course called the Science of Happiness, and before that had been trained as a Peer Supporter at the University of Oxford to help students dealing with mental health issues. At the time, I was dealing with stress and anxiety from my personal life, but believed that when I solved the situation, so too, would my life get back on track. Lab was a haven from everything outside, because things here were objective, and the data flowing continuously.

I was the happy-go-lucky grad student who was known for yelling “Science!” and running into the lab excitedly whenever an interesting result surfaced. I danced through the empty halls of the institute on weekends, blasting music and singing at the top of my lungs. Life was good, science was good. I wanted everyone to experience that. I thought I was immune.

But my anxiety continued to return, especially after I hit the expected third-year slump in my PhD. Sometimes, there was no clear cause or trigger for it; I would spend whole days in front of the computer in lab, using all my energy and lessons in mindfulness to regain the sensation of breathing freely and the ability to focus on my work.

That’s when my aunt, a psychologist who works at a clinic in Mexico, suggested I might have Asperger’s Syndrome, or Autism Spectrum Disorder Level 1. Until then, I had thought I was just unique and quirky: someone who was overly enthusiastic, intense, and avoided weekend plans to spend days shut in his room reading and writing about the strangest of topics. The professional diagnosis came a month later, but the recognition clicked as soon as I obsessively read the resources my aunt recommended. There were others like me, others who understood the gifts and challenges I had been unsuccessfully trying to describe to friends, family, and partners (cue the Tarzan music).

As freeing and joyful as the news was, and as much as I wanted to try on this new identity I was receiving in exchange for the thousands of labels I had accumulated over my life, the diagnosis coincided with a break-up and another slump in the PhD that left me at my lowest self-image I had had in a long time:

Maybe there WAS something inherently wrong with me, rather than just different. Maybe I shouldn’t aspire to do certain things because my brain just wasn’t built for them.

This is when the depression began, and managing that, alongside my anxiety, became overwhelming. It’s something I would never wish on anyone.

Being on the autism spectrum puts me more at risk for mental health issues, but no one is truly immune. The experience did give me much needed perspective: where before there was only empathy for those struggling with mental health issues, there is now solidarity. I too, am walking this path.

I understand what it is like to have weeks fly by without data because your motivation and concentration to work go out the window, what it is like to miss meetings because you’re in bed unable to get up, or hiding in an empty corner of the tissue culture room because you just broke down in tears and how difficult it is to recognise and admit that you need help and to ask for it.

I understand from a deep place of gratitude that having a powerful support network in my supervisor, friends, and family, made all the difference during the recovery from depression, and while I still work on my anxiety. And I understand that, unfortunately, not everyone has such a strong support system available to them.

This is where environment plays a huge role in either mitigating or exacerbating the mental health struggles we can all experience. We cannot continue to ignore the countless anecdotes, now being backed by hard data, such as the Belgium study. These point to the sad truth we must all face: that the current academic culture and environment are doing more exacerbating than mitigating.

Behind each of these data points is a story, a life, some of which are tragically lost to mental health issues. We cannot continue to feel isolated and alone.

Those of us that can and are willing must join our stories and voices to advocate for ourselves and those who cannot. It’s #OktoSay. As someone who has been there, I urge you to reach out. It gets better, and you are never truly alone.

In healing solidarity, Juan Pablo Ruiz.

About the Author

Image of Juan wearing a labcoat
and taking notes in a laboratory
with glassware in the background

Juan Pablo Ruiz is currently working towards a DPhil in Biomedical Sciences. His research interests are in tissue and stem cell engineering, as well as developmental biology. He also has a wide array of interests which include positive psychology, literature, and creative writing. He recently received an ASD level 1, or Asperger's diagnosis, and is now working to break the stigma surrounding mental health and neurodiversity in academia

Overcoming Hurdles During My PhD

Written by Alex 

Deciding to do a PhD is an enormous life decision. It's something that will take over your life for at least three or four years after you start. Overall, it's been an amazing experience for me, and now that I've come out on the other side, with my doctorate in hand, I've had some time to reflect about navigating the experience as a student with a disability. My PhD is in Arts and Humanities, so this post reflects my experiences in that faculty.

I have an invisible, physical disability. It's something that varies from day to day. My condition is genetic, which means that it will never go away, and it's something that I've had to learn to cope with. If I'm honest, I didn't really learn to manage my condition until the end of my masters degree. I realized that I couldn't keep working myself into the ground, and that it was much better to take a bit of time off and refresh, so that I could keep going.

In terms of choosing a place to do my doctorate, I was lucky enough to get a funding offer at the same place where I had completed my MA. I hadn't really thought about disability support when I was applying, as I knew it was such a game of chance anyway that I'd be lucky if I got anything. Once I got my position though, all the documents were in place so that I could continue receiving the same support I'd had before.

The system slightly changed in terms of finances - it was my funding body rather than the Disabled Students Allowance that supported me now. But, I found this process quite straightforward as I already had all the required documentation. To be honest, I don't really remember much about this application process, just that the staff at Disability Services were really helpful in getting me sorted.

For me, it was important that both of my supervisors knew about my disability and understood the impact it might have. I use a voice to text software called Dragon Naturally Speaking, which often makes interesting word choices, such as ‘surgical’ instead of 'liturgical’ and taking issue with my use of the past tense. Consequently, my supervisors were a little more lenient with mistakes in my work, in instances where it was clear that it was Dragon making the mistake and not me. Also, one of my supervisors had an office three flights of stairs up. That's not something I'm able to do, so we always met somewhere else. I think being open with my supervisors enabled them to better support me in my studies.

In terms of other students, my disability was not really something that came up much. I sometimes talked about my 'joint problems', but usually only when I was explaining why I couldn't carry things or needed to sit down. I slowly became much better at acknowledging when I needed to sit down during the drinks after evening seminars. Initially, I would just stand like everyone else, but now I’ll seek a seat if I’m struggling.

Another thing I had to learn was to take time off. Doing a PhD is a bit like a job, although it seems to be not so much 9-5, but rather 24/7. You'll see people tweeting about working at all hours, and there seems to be a really unhealthy culture of boasting about how much you're working. This really isn't helpful. One of the most important things for me to do to manage my condition is pacing - pacing myself not only through the day, but also throughout the week, to make sure that I don't burn out.

While I was doing my thesis, I didn't work for two whole days per week. Initially this was just two days throughout the week, one weekday and one day on the weekend, and then it changed to taking the entire weekend off. On these days, I didn't respond to emails or do any work. I might have done the odd bit of reading or teaching prep, but nothing too strenuous. If I hadn’t taken this time out, then it would have had a negative impact down the line. For me, it was much better to have this time off and getting enough rest than having to take at least a week off every couple of months to deal with the burn out. This is a difficult thing to do, particularly when you feel that the people around you are working harder than you, but the most important thing is taking care of yourself.

One thing I wish is that there was more of a community of disabled students. This really wasn't the case for me. I know there are issues around disclosure and so perhaps some people are scared to admit they're having problems. I did find a community on Twitter though - I've found lots of other people in academia, who are disabled, or who have my condition - #spoonie and #eds for example.

A final piece of advice would be to not be scared to ask for help, and to make sure you ask what is available for you. For example, my university has a computer suite with adaptive technology, which I only found out about at the end of the third year of my PhD, nearly four years after I joined the university. I now employ a policy of 'don't ask, don't get' - the worst that can happen is that someone says no. It can be tough sometimes, but for me this ultimately meant that I received the support I needed to complete my doctorate. 

About the Author

Alex just completed her PhD in an Arts and Humanities Faculty. She has an invisible disability called hypermobile Ehlers Danlos Syndrome. hEDS is a collagen disorder, which means that Alex’s ligaments are too stretchy. Among other things, this causes chronic pain. She also blogs about phd-ing while being disabled and wearing a 'Please offer me a seat' badge on the London Underground at  https://pppphd.wordpress.com/

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 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.

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.