What if we viewed lived experience as an asset? As an asset of professional, economic,…
Today I read this article in the New Statesman, talking about presenteeism — when people work whilst sick, even when they shouldn’t be. The New Statesman article author (Harry Clarke-Ezzidio) takes this into consideration for the general population, but I wanted to particularly highlight this for the disabled and chronically ill community, for whom this issue is even more difficult than the general population.
To start with, it is interesting that the article states:
“A Chartered Institute of Personnel and Development (CIPD) survey from just before the pandemic hit in 2020 found that 89 per cent of respondents reported presenteeism in their workplace, while less than a third of companies were actively taking steps to address such issues.”
Presenteeism is a problem for the whole workforce, and the pandemic has brought this into sharp focus. People frequently attended work when ill prior to the pandemic and in fact, this was often an expectation from employers and employees themselves. Self-employed people find this even more difficult without entitlement to Statutory Sick Pay (SSP). However, COVID has shifted this somewhat. Whereas before the pandemic, coming into work ill was an accepted practice, COVID-19 has meant that this is absolutely not acceptable in the current global situation. That is, unless your illness has nothing to do with COVID.
As a disabled person with a long-term health condition, I frequently see my community discussing employment and work and their disability or health condition in relation to their job or working in general. Many times I see disabled people and those with long-term health conditions state that they go into work when they shouldn’t due to pressure to be seen as ‘pulling their weight’ to their employers, especially knowing they often have to take more days off than the general population as part of health and condition management, such as medical appointments. However, conversely, disabled employees can often be some of the most dedicated, taking their job very seriously and always endeavouring to be in work whenever possible to evidence to their employers that they are able to work, coping with work and that they do contribute to the company or organisation. They do this because they need their job, want their job, don’t want to be seen as using their disability or health condition as an excuse and don’t want to be seen as weak or work-shy — all justifications and reasonings I have seen reported by the community. They do this to satisfy themselves, and they do this to satisfy their employers. Whether this attitude towards work is a positive or negative approach, is up for debate, but I think it has both positive and negative elements.
14.1 million people in the UK are disabled (1). That equates to 1 in 5 of us. This includes those who do identify as disabled under the Equality Act (2010) legislation, but also those who may not identify strictly as disabled and/or those who have a long-term health condition that would class them as disabled under the Act. According to the Office for National Statistics, in 2020 around half of disabled people aged 16 to 64 years (52.1%) in the UK were in employment (2). The ONS statistics also reveal that 8.4 million people of working age (16-64) reported that they were disabled in October-December 2020, which is 20% of the working age population. This is an increase of 327,000 from the year before. (3) It is also worth noting that 14 per cent of all disabled people in work are self-employed, equal to 611,000 people (4).
Presenteeism in the disability community and those with long-term health conditions in employment or self-employment is an under-recognised problem. Disabled people and those with long-term health conditions feel more under pressure to turn up at work, to fulfil their job — and many times, to go the extra mile — and to show their commitment, ability to cope and to prove to employers they are right to employ them. Disabled people and the long-term sick already face far more barriers to getting a job — despite schemes like the automatic interview for disabled candidates who “fulfil the job criteria”, which means nothing as it does not then stop discrimination in the final candidate selection process — and we often try and forego the legally entitled reasonable adjustments so as to not put employers off when, in face, reasonable adjustments are very positive in employment and these adjustments can and do enable people to get into work and remain in work, through schemes such as Access to Work. Access to Work is a programme of support for disabled people starting, or already in, employment or self-employment and can provide a range of funded support including equipment to assist the person to do their job, work coaches, sign language interpreters, support workers, supported interviews, and more. Even with reasonable adjustments, people with disabilities and/or long-term health conditions often still struggle in work, as a result of their impairment or illness, due to things like fatigue, pain, flare-ups or fluctuation of their condition, side-effects of medications or treatments, the need for surgeries and procedures related to their impairment or illness, frequent hospital appointments and for some also frequent hospital admissions, and/or deterioration or progression of the impairment or underlying condition, as well as the impact of “regular” illnesses such as coughs, colds and so on. This community includes an increasing number of people with life-shortening and terminal illnesses who wish to remain in work. The article also quotes Gwen, saying “Gwen adds that not only would she feel “guilty” for taking time off, but that the stress of potentially falling behind would make her “more ill in the long run”. This is also a difficult issue for disabled people and those with health needs as not only is there pressure to work in the first place whilst ill, the pressure of then trying to catch up could further impact their impairment or underlying condition. Disabled people and those with long-term health conditions can struggle to balance their needs with the requirements of their job and this is a large cause of unemployment in the disability community as people are unable to manage work or to balance their illness, impairment, treatment or care with an employed or self-employed role.
As a result, presenteeism is probably far higher in the disability and long-term health condition working population as people try to remain in work and fulfil their employment (or self-employment) and be able to manage financially. This is even more difficult when life can cost disabled people £583 more on average a month (5), making employment and finances an even more contentious issue. It’s also worth noting that, after housing costs, the proportion of working age disabled people living in poverty (27%) is higher than the proportion of working age non-disabled people (19%) (6). How do disabled and those with long-term health conditions manage the difficulty of presenteeism and the pressure to work regardless of health? That would make an interesting research project.
The New Statesman article also says
“The cause of presenteeism is no mystery: in a demanding office culture, heavy workloads, high expectations and strained resources result in overworked and overstretched employees – trends that are exacerbated by general job insecurity.
But while presenteeism may be commonplace, that doesn’t make it less serious: it can lead to more adverse forms of illness, including depression, burnout, anxiety and stress. And for what? Unsurprisingly, research has shown that people are less productive when working while ill. And of course, people who turn up to work when unwell risk infecting their colleagues.”
The risk of burnout and anxiety, depression and stress for the working disabled population is likely far higher than the general population. Juggling a job with an impairment or health condition that causes fatigue, pain, flare-ups or fluctuations, requires medications with side effects, and/or requires careful management and pacing, is no easy task. The pressure of work alone is a burden for disabled people, before you even factor in the physical and psychological demands of fulfilling their job. Disabled people and those with long-term health conditions often do force themselves to work when they should rest, spend their life pushing themselves to work and then spending any free time sleeping or unable to function, come into work when they should take a day off, and not always be honest about the extent of their disability or condition and its effect on their job.
COVID-19 and lockdown have brought with them an interesting change in work habits. For years disabled people have been begging for flexible work and/or the ability to work-from-home, either full or part time, and this was often refused by employers who stated it was impossible or not conducive to the role they play in the company. Suddenly with COVID-19 and the lockdowns, work-from-home became the norm and businesses had to make concessions and adaptations to their employee’s working life to continue to function in light of the restrictions. Many disabled people have found this a blessing, but it has an unintended negative side effect. Working from home makes it harder to switch off, as stated in the New Statesman article:
“However, once lockdown was imposed and people adapted to working from home, the old in-person brand of presenteeism morphed into something even more pervasive. Remote working has exacerbated a trend towards an “always-on” working culture that was already inching its way into our lives. Now that our homes are our offices and our offices are our homes, it is harder than ever to switch off from work. With work emails at every time of the day and night and no physical delineation between office hours and leisure time, presenteeism has finally made itself welcome in our collective homes, says Suff.”
Many have found it much harder to get a work-life balance, always checking emails, doing work out of working hours, still thinking about work when everyday life and hobbies should’ve taken over. For many, all they have had through the lockdowns, is work. For some, their only contact with the outside world has been with fellow employees in Zoom (or other video call platform) meetings. Disabled people and those with long-term health conditions — the so called “vulnerable people” (or “The Vulnerables”, to quote Baroness Campbell of Surbiton) — in official literature being people who are deemed clinically extremely vulnerable (CEV) or clinically vulnerable (CV), have been forced to stay at home, to shield themselves from the risks of COVID-19, to reduce their risk of having the virus, and also making difficult decisions about care teams and previously vital visitors to the home. Many disabled people have been completely isolated alone, others choosing to move back in with family or with friends to shield together, and some even having had their care staff move in with them to continue to care for them and keep them safe. Disabled people and those with long-term health conditions have faced the most difficult of times during COVID-19 and whilst the positive of work-from-home has been a welcome, long requested “reasonable adjustment”, many disabled people fear what will happen in a post-pandemic world. Will the employers want everything to go back to normal, forcing disabled people and those with long-term conditions to choose between health and work? Or will employers continue to support their disabled employees and those with long-term health conditions by continuing with work-from-home and the reasonable adjustments? It will remain to be seen. The end of the pandemic still seems such a long way off, but with the end of many restrictions and “freedom day” having passed, what does the world of work — and the world, generally — hold for my community, my fellow disabled peers and peers living with long-term health conditions? I do hope, if nothing else, we’ve learnt what it can be like to be disabled, facing constant barriers and restrictions to our lives, having our lives turned upside down and having rules and regulations imposed upon us, but also show the world that reasonable adjustments are a positive introduction to the workplace, and that even with overwhelming obstacles, that disabled people are far more dedicated and resilient than given credit for.
Well, one can hope that the world has learned something from this pandemic, and that, somehow this will lead to positive effects for the disabled and long-term health condition communities. The new disability green paper leaves a lot to be desired, though.