According to figures from 2023 by the Office of National Statistics, it is estimated that 3.5% of the Scottish population have self-reported Long Covid. This is an increase of 122% from 2021. In this article, EIS member and Long Covid activist Sheena AlAlami raises the importance of keeping the disabled employee at the heart of a return to work, through tailored reasonable adjustments.
Life changed drastically for me in early 2020, when I developed Long Covid. It has taken some three years to get my life back to something that almost looks and feels normal, and even though I still have some distance to go, a return to work is looking to become possible with the help of reasonable adjustments under the provisions of the Equality Act (2010).
Long-term illness and disability bring with them the stages of grief and anger, and I was very angry at being left so disabled. I had gone from a fully functional life of turning up to school at 8am, often not leaving until 5pm having worked a full timetable, to not being able to shower for days, do the simplest house chores or make a cup of tea without spilling it and this was a difficult pill to swallow. The Jonas Brothers sum this up in their song, A Little Bit Longer, “But you don’t know what you got ‘til it’s gone, and you don’t know what it’s like to feel so low.”
I channelled my anger and grief into activism with other people at Long Covid Scotland. I chaired the employment group and sat on the board of trustees, which had its challenges as everyone was unwell with Long Covid. I developed an employment survey that had an astounding 232 respondents which was later published.
I attended meetings with MSPs, NHS leads, took part in research projects, met with ME Action, spoke at the STUC Disabled Workers’ Conference, and presented viewpoints at the Scottish Parliament Long Covid Cross Party Group. All this was done virtually, between hospital appointments, afternoon sleeps, and symptom management.
It sounds like I accomplished loads, so, why am I not back in the classroom? Well, that was all virtual and at a comfortable pace, but returning to work as a disabled person is not straightforward. Recovery from Long Covid, as with many other protracted illnesses is not linear and there are many unforeseen bumps in the road and unplanned relapses.
Some of the most common symptoms of Long Covid which impact a return to work for many people are ongoing breathlessness, cognitive dysfunction, and fatigue, but there are many more symptoms with systemic effects.
Breathlessness doesn’t mean that out-of-puff feeling when you reach the top of the stairs but an unending need to catch your breath from the moment you rise out of bed, to carry out your personal care, before the demands of the rest of the day.
Cognitive dysfunction can affect speech and language, the ability to say the correct words, to say them in the right order, and to follow a conversation properly. It can also mean that instead of whizzing down a spreadsheet, copying and checking information, you have to go back and check umpteen times as within a few seconds the memory of that information has gone.
Part of embracing the ebb and flow of recovery was reaching an understanding about the personal targets set as it is very easy to constantly bully yourself to do more, and it took time to realise that all aspects of wellbeing still needed nourishing, like socialising, indulging in hobbies, being outdoors or even managing a grocery shop if symptoms abated!
The hardest concept of all is the understanding of fatigue. It’s not the summer term calling for a long-awaited holiday nor being up all night with a sick person but a veil of exhaustion that does not lift in the short term, no matter how much rest and sleep you get. The batteries are empty from the start of the day, the next, and the following day.
That was my inner world but from the outside as a newly disabled person, one of the first things I had to get used to was perceptions from other people who would say, ‘You look well’. To someone sitting in pain or discomfort, with their game face on, this comment comes across as an unreflective albeit well-meant remark. I noticed that for the period when I used a walking stick, the behaviour of those around me was markedly different.
The social model of disability identifies society as a barrier. From attitudinal barriers, and assumptions, to physical barriers such as access to buildings, to information or communication barriers which can all cause disabilities to become more obvious. Society needs to be the change, not the disabled person.
I did attempt a phased return in 2021, which ended up leaving me worse off than before. I had underestimated where I was in my recovery alongside the demands of in-person teaching following the home learning period, and it has been a massive learning curve since!
For example, the reasonable adjustments I had, could have been more specific, and the hours built up more gradually. While an average phased return may be for four weeks, some employers (including in teaching) are offering phased returns of twelve weeks – and as a very gradual phased return with tailored reasonable adjustments, this is highly recommended for Long Covid. Overall, keeping the disabled employee at the heart of the conversation is critical to making an equitable and sustainable work return.
Unfortunately, being disabled in an ableist world is very challenging as everything must be fought for, at a time when you have the least energy to spare – which is why union support is vital. Asking for reasonable adjustments can be met with resistance, made more difficult by the employee/employer power imbalance. But, reasonable adjustments are not favouritism – adjustments exist to level the playing field and make going to and sustaining work equitable and fair for all. Making a return to work successful is in the interests of the employee and employer. Your Trade Union Representative, Equality Representative, Occupational Health, and Access to Work can all be of assistance.
Sometimes no matter how unwell we are, we need to battle internal or external factors and tell ourselves, “I’m a warrior, I’m stronger than I’ve ever been.” – just like Demi Lovato in her song, Warrior.
As a Secondary music teacher, one of the most invisible ongoing disabilities I have is single-sided deafness (Sudden Sensorineural Hearing Loss/SSHL). This means my brain and auditory wiring must constantly work twice as hard to hear and then process that information, with one ear doing the job of two, and it is still in the process of learning this! I have lost directional hearing, so for example, if I forget where my phone is and ring it, it takes me much longer to find it, and with deafness comes listening fatigue which impacts my overall wellbeing as I must study the faces of people who talk, to lip read – and within a noisy environment, the concentration demands are far greater.
Just because a person outwardly looks like an able-bodied ‘well person’, people can assume that they are feeling on top of the world, despite suffering from fatigue or pain. Or, that they can easily do certain things when, in reality, that person can’t take for granted the fact that they were able to shower, to pour a cup of tea without spilling the water all over the worktop or that their fatigue was manageable enough to get behind the steering wheel. It’s different when it is invisible. I would ask that you take away how important it is to be aware of any hidden disabilities that people may have, including Long Covid, and not make assumptions based on how somebody looks.
Colleagues can offer support in many ways, by assisting those who make a return to work feel comfortable, and not overwhelming them, by bridging any gaps in school news and providing updates gradually, and just by welcoming them. It is important to acknowledge that the same personality and professional experience exists within that teacher but to note the new or ongoing challenges presented so that the team can meet to embrace the change collectively.