© Susanna van Tonder
It’s been a rich few months since the global pandemic encompassing the coronavirus has been declared.
It’s been a few extraordinary months since the global coronavirus pandemic has been declared – it can be said that this major health crisis has impacted our entire worlds, and how we relate to each other. Something that has however been relatively seldom discussed in subsequent discourses is the impact the coronavirus has had on people with hidden disabilities, vulnerable people, people dealing with chronic illness. People like me.
I am a young woman many would consider healthy and abled on first sight. I would not fit the stereotype of vulnerable nor disabled – my body does not seem fragile at first sight, nor is it in need of mobility aids (at least for now). The “old person” or disabled person “in a wheelchair” are moulds into which I do not fit – the not so niche category I find myself in is one of hidden disability (most disabilities are invisible). I do not have a visible disability nor is my chronic illness particularly noticeable – those differences which people use to fit others so nicely into the manufactured concepts of us vs. them.
What I identify as is however someone who is disabled with a complex medical history to say the least – and most may know me from my disability rights activism and patient advocacy with a particular focus on multiple sclerosis; a multifaceted disease which includes a thousand possible symptoms and disabilities which can develop as it affects the central nervous system. Disability and chronic illness are interconnected – and we are all susceptible to one or the other sooner or later. For instance, 1 in 3 Europeans will be affected by a brain disease during their lifespan. Pretty common isn’t it? Current knowledge on the coronavirus suggests that it could lead to long-term symptoms as seen in M.E. (i.e. Myalgic encephalomyelitis otherwise known as Chronic fatigue syndrome) – the theme affects us all: we are in this together.
© Susanna van Tonder
Prior to Covid-19, reasonable adjustments such as remote working were not readily given, with phrases such as “there is no room for people with disabilities here” flying around regularly - in a direct or less direct manner - when those who are affected approached their employers. It is a shame that a pandemic was the tipping point for enabling teleworking whilst these accommodations were advocated for many years by the disability and chronic illness community. Taking into account that for many who are healthy working from home seems like a nice option to have; for many vulnerable and people with hidden disabilities, they actually represent the possibility of livelihoods – of meaningful employment and education.
Making options remotely accessible gives us the possibility to tune into life – to have a quality of life which is not substandard: where we do not have to make the choice between showering or cooking dinner. In reference to work, fatigue (which is not regular tiredness) could cause us to lose our employment due to absences. Therefore, so many who are chronically ill would still go to work to avoid absence records and a possible professional redeployment which includes a salary cap for life (and an increase of public expenditure) and in turn pay the price with their health. Presenteeism is but the result of practicalities and formalities, which consequently just limits our productivity and our development at work. We want to work and we want to contribute. Let us.
In a certain sense, a pandemic has helped us being more alive – which is direly ironic when considering that we are most at risk.