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Disability Narratives

During the interviews we explored several different ways that a long term condition or disability might impact (or not) upon a person’s work. This included the many small ways that people had found to adapt their working practices. We also discussed how some strategies needed wider consideration and involvement of colleagues and managers. For many people we spoke to managing their condition or disability itself took significant amounts of emotional and physical effort, which needed to be accounted for in their life. Sometimes the changes they put in place meant medium or long term shifts in their role, or a change to their working practices, such as going part-time.

Productivity


Discussions of disability in the workplace often focuses on what people cannot do. However, for many people we spoke to, the adaptations to their working practices were only noticeable to them. For some the changes to the way they worked had taken place over the years, without really realising they were coping strategies and were indistinguishable from 'good working practices' generally. This included keeping good notes, reminders and documentation; maintaining regular working patterns; forward planning and working ahead of deadlines; or, making the most of available work assistive software.

Click for Richard's interviewRichard finds having very regular work patterns aids his management of his diabetes.

 

Click for John's interviewJohn has found that creating opportunities to have regular rests during the day helped him work a longer day.

 

Click for Lyn's interviewLyn describes some of the strategies she has put in to place to manage her dyslexia.

 

Click for Paul's interviewLearning to adapt his working style to his strengths was an important strategy for Paul and his team.

 

Some people explained that they sought to "keep working", even when in severe pain or significantly debilitated. As Mary said, "I did keep working, [and] in retrospect, I can't believe that I kept on working [laughing], to be honest. Because it was very bad. Even holding a cup of tea was difficult. I was really quite severely impaired by it. But it was easier just to keep going."

Click for Gabrielle's interviewGabrielle started a new job soon after an MS episode, meaning she only had vision in one eye, but sought to carry on as normal.

 

Unsurprisingly, working through a debilitating episode of a condition would affect people's work. However, there were strategies that people put in place to avoid too many effects upon their work. Devon described how "there were days where I just [the pain] got too high, and I would have to go [home]". Aware that working when experiencing high levels of pain may affect her accuracy Devon would, at the start of each day, "bring over what I was working on previously, and then look it over. Because I'm fresh in the morning. Look it over, and does this still make sense? "Or was this the afternoon of I've just lost the plot'"? This meant she was "constantly going back and checking", which she recognised was "a bit slower", but having previously lost a large amount of work due to an error when working in pain, this method "still allows me to make progress forwards".

Click for Jan's interviewJan has had full epileptic seizure and absence seizures at work, both bringing short term memory loss; while she can work through an absence seizure she finds it helps to make lots of notes as she goes through her day.

 

Click for Susannah's interviewSusannah sought to work as much as she could during a period of chronic migraines; although this affected her productivity, the advice from Disability Adviser helped her put strategies in place to manage her workload.

 

Click for Roberta's interviewRoberta found her productivity at work was affected by the pain she was experiencing and from having to chase the support she needed.

 

Managing expectations

Common to most workplaces is the tension between the ideal of producing the highest standard of work and the reality of what can be done with the means and time that is available. Managing these expectations of what is reasonable was particularly difficult for many of the people we spoke to. This was not only because of the high expectations each person held for his or her self, but also because of the uncertainty about what their condition or disability might bring to working practices.

Click for Liz's interviewLiz describes how she sometimes struggles to manage expectations of what she might be able to achieve upon her return to work.

 

Click for John's interviewBeing part-time helps John remain well, but he it has raised questions for him about what he might be able to achieve.

 

Occasionally the tools or techniques introduced to assist people can result in problems with work, particularly while the person learns to incorporate them into everyday practice. As Ruth said when provided with new IT equipment and software, "it'll take me a while to learn that".

Click for Mary's interviewAlthough Mary found useful strategies to help her work, she did find they slowed her down.

 

 

Changes to roles

It was occasionally helpful for some people to seek amendments to their role. Some people found these changes helpful, allowing them to focus on what they could do and maximise their contribution to their team.

Click for Devon's interviewTo help accommodate Devon’s mobility problems, her role shifted from a mix of lab and computational work to specialising in the computational aspects.

 

Click for Mary's interviewA change in role helped Mary focus on what she could achieve.

 

Not all changes to people's roles went smoothly. Charlotte explained that during a particular bad episode of IBS she needed to take an extended period of sick-leave. She said her manager was sympathetic and asked if she might be able to return with fewer hours and responsibilities. This was a plan she and her manager hoped would allow her to return to work, "after two, three months [when] things would settle down enough. [But] it then was clear that it wasn't settling." At this point Charlotte recalled that her manager "obviously had to look after the interests of the group, which is why he didn't want me back, even part time, or to try to work it out. So that was unfortunate. But you know, I understand it. And he wasn't nasty about it. I think he was just kind of 'It wouldn't work for you to be working from home, we really need somebody here in the office.'" Charlotte reflected, "So it was like okay. At least it's clear, you know, at least it's clear that's not an option, fine."

Click for Milembe's interviewMilembe found her return to work difficult, as management expectations did not account for the side-effects of the cancer treatment she was still experiencing.

 

Click for Frances' interviewThe changes to Frances role left her feeling humiliated and untrusted, as well as leaving her uncertain about what her position was.

 


Flexible working


Having more flexibility to their working patterns was a preferred strategy for managing the balance between work and managing a condition or disability for many of the people we spoke to. This might include adjusting their working hours, providing opportunities to work from home, or reducing the number of hours worked overall. In many cases such flexibility brought greater benefits both to the individual and the team, such as avoiding taking (long-term) sick-leave. Yet it was not always easy to main these new working boundaries once they had been established. Some people experienced pressures to "make-up" time or do extra work outside of the new hours.

Click for Verity's interviewVerity explained that flexible working is part of her team’s usual practices, and appreciates how she is allowed to manage her work and condition to the benefit of all.

 

Click for Sue's interviewThrough a phased return to work, including working at home, Sue was able to continue doing the work that no one else in her team was able to do.

 

Click for Jo Z's interviewJo Z explains how her ad hoc working at home arrangements help her avoid taking leave.

 

Click for Devon's interviewDevon found her need to work from home was easily accommodated within the research team she worked in.

 

While flexible working practices have many advantages, some people also noted how "the line between work and not work can be very, very blurred. I think for a lot of people it's becoming more and more blurred" (Paul). Some people told us that the benefit of the flexible working arrangements they had in place had been reduced by the actions of some colleagues or managers.

Click for Susannah's interviewWorking part-time helped Susannah manage her migraines, but she had to be careful not to let work creep in to her days off.

 

Click for John's interviewAlthough there is a degree of flexibility to John’s role as tutor and researcher, he has to tutor when the students are free.

 

Click for Charlotte's interviewCharlotte sometimes felt that her part-time status was implicitly questioned.

 

Click for Rachel's interviewAlthough Rachel’s request for reduced hours was agreed, she was put under pressure to return and also to make up hours from attending doctors’ appointments.

 

Not all roles or teams were open to flexible working arrangements, which left some people feeling frustrated and unsupported.

Click for Milembe's interviewMilembe felt she could still contribute work from home, but her managers felt this was not practical.

 

Click for Frances' interviewFrances' initial flexible working request to accommodate therapy was refused by her department.

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Click for Roberta's interviewRoberta was unable to work from home because she did not have a suitable work station setup.

 

 

Doctor’s appointments

Having a long term condition or disability often involves more frequent medical appointments. As Rachel explained many specialist NHS clinics operate on certain days, at particular times (often between 9am to 5pm), and, can involve long waits to get appointments. Others explained that they needed regular contact with a range of healthcare professionals, sometimes within the same week. So while the people we spoke to sought to minimise the disruption that their healthcare had on their work, they greatly appreciated any consideration and flexibility that their managers and departments were able to provide.

Click for Jo's interviewJo explains the process of taking leave for hospital appointments and how she doesn’t always get to choose what time of day they are.

 

Click for Gabrielle's interviewGabrielle appreciates that her managers are flexible, as she sometimes only gets 24-hours notice of a hospital appointment.

 

Click for Sue's interviewSometimes as part of her flexi-time arrangements, Sue has to make-up the time lost due to attending doctor’s appointments.

 

Click for Rachel's interviewAlthough Rachel’s request for reduced hours was agreed, she was put under pressure to return and also to make up hours from attending doctors’ appointments.

 


The people we spoke to have had a range of experiences of sick-leave. For some, just agreeing with their manager that they could take sick-leave provided sufficient reassurance and support. Others noted that the flexible working arrangements they had in place had helped them reduce the amount of sick-leave they were taking to a few days a year. Whereas others had experienced as severe period of ill-health and needed to take more extensive sick-leave (see Resources). For most, the decision to take sick leave involved more than a consideration of their condition. Many knew that their condition could fluctuate without warning, and so would always need consider their future sick-leave needs. And some people explained how they were very aware of the impact their sick-leave had upon their colleagues and their team.

Click for Verity's interviewVerity explains how the importance of work during her depression and how she tried not to take sick leave.

 

Click for Stella's interviewOne option for Stella was to take sick-leave for a period of self-care, but coming in to work was providing her with an incentive to keep going.

 

Click for Gabrielle's interviewGabrielle reflects how when taking sick leave she considers a number of implications beyond how ill she is, including the consequences for her team as well her possible future needs.

 

Click for Roberta's interviewNot having flexible working arrangements meant Roberta’s weekends became recovery days; sometimes she has to take sick-leave during the week to manage.

 

Some of the people we spoke to were provided with 'discretionary leave' or 'disability leave' due to the particular nature of their circumstances.

Click for Maria's interviewMaria explains that her managers gave her two weeks discretionary leave to complete the training with her guide dog.

 

Click for Mary's interviewAfter discussion with her college, Mary was given ‘retrospective sick leave’ from teaching, helping her catch up with other work; she was also provided with disability leave to train on her new equipment.

 

Given the international workforce of the University, it was unsurprising to find some different attitudes to sick leave.

Work-life balance


Experiences of a long term condition or disability often brought reflections upon what is a good work-life balance and the tensions that restrict this from happening or being maintained. The 'normal' expectations of academic life, such as "publish-or-perish" attitudes, teaching demands, and working long hours were particularly difficult to manage for those people who sought a good work-life balance to maintain their health. Richard explained that at busy and stressful times one of the dangers was that he was not as careful about managing his blood sugars as he needed to be. He reflected that sometimes it seemed in academia, "one should always put work first, and things like health [are] things that interfere with one's glorious career path, is the way some people seem to view it".

Click for Susannah's interviewAmongst other changes, Susannah needed to adapt her work-life balance to help control her migraines.

 

Click for Gabrielle's interviewGabrielle explains that knowing what is a good work-life balance is not always obvious or easy.

 

Click for Lyn's interviewLyn explains that her dyslexia is just one factor that she considers when evaluating how much time to spend on a piece of work.

 

Click for Ruth's interviewAt times Ruth finds her dyslexia brings self-induced pressure as she seeks to get work completed in time.

 

The context within which people sought to find a work-life balance, which would allow them to minimise the effects of their condition or disability on their health, was also very important. In many cases, there was a failure to recognise how the benefits of the flexible working arrangements were challenged by pressures to work long hours, to make-up for staffing shortfalls, manage (unreasonably) high expectations, and cope with the precarious nature of temporary contracts.

Click for Gabrielle's interviewGabrielle reflects on the work context within which support is provided by managers and how this affects her understanding of the support that is provided.

 

Click for Maeve's interviewMaeve reflects on how maintaining a work-life balance means managing the academic pressure to (over) work.

 

Click for Charlotte's interviewCharlotte has found some successful strategies to manage her conditions, but finds this success leads to requests to do more work, which might disrupt the work-life balance she has found.

 

Click for Stella's interviewBeing an early career academic involves a degree of uncertainty, which can affect peoples’ mental health and that Stella would like to see recognised.

 

 

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