disability and visibility: a discussion about underlying health conditions

What does it mean to be disabled? And what is meant by that problematic and all too popular phrase “underlying health conditions”?  

Disability is not as objective as it might seem, and is a label which I have personally struggled with for my entire life. The Equality Act of 2010 defines disability as the state when someone has a sustainable long term physical or mental impairment which adversely affects their ability to engage in day to day life. This seems not only logical, but easily applicable and diagnosable; but it was only when applying for work a few years ago that I realised how complicated this category of disability can be. Whilst filling in some personal information, the company posited the question: if all medication was removed, how well could you continue in day to day life? If the answer was ‘completely unable’ then you were identified, at least in the company’s eyes, as disabled.  

This stunned me. As someone who was diagnosed with Ulcerative Colitis at nine years old, and has been on more medication, steroids, UV drips and painkillers than I could ever name or recall, there was no doubt that, under this definition, I was identified as disabled. Even though I had been suffering with a chronic autoimmune disease for all of my memory, I had never considered that there might be some reason to differentiate between myself and my peers. In fact, for all of my childhood and teen years, my health condition was just simply there – an omnipresent thing that demanded a huge amount of physical and mental effort, but not something that stopped me living a happy life (excluding extreme flares). And, although I am still unsure about this company’s definition of disabled, for the first time in my life I started considering how disability should be viewed; not as a stable and objective category, as I had regarded it until the age of 18, but instead a plastic one, where various identities participate in a constant state of flux.  

However, I acknowledge that it is a luxury to even consider these questions. For many people with disabilities their condition is visible, whether to themselves or to society. It is at this hurdle that the destructive feeling of guilt and intrusion overwhelms me: not only as an able-bodied woman, but a young and privileged one at that. I am certain that acquaintances, colleagues and even strangers in the street would not necessarily consider that I have a chronic health condition. Furthermore, I am fortunate that in the last year, after lots of trial and error, I am in a position where my medication controls the severity of my illness. For many people with autoimmune diseases this is not a possibility, and I am well aware that, despite my current medical success, my long journey of controlling this disease is far from over. However, this current “healthiness” exacerbates this intrusion with disability which I often feel, this feeling that I am not “ill enough” and to simply stop complaining.  

I believe that the majority of this guilt and intrusion is fundamentally a reflection of society’s deep-rooted judgement surrounding disability. Our constructed borders around disability, one in which I myself was complicit in until a few years ago, only foster and aid this hostile environment. It is the Baader-Meinhof phenomenon – once you become aware of both the ableist and the judgemental discourse around disability, it is impossible to ignore it. Multiple health charities are challenging this narrative; for example, “Purple” and “Crohns and Colitis UK” are implementing the “Not All Disabilities are Visible” campaign, a move to place signs over disabled toilets in an attempt to decrease the amount of verbal abuse directed at able-bodied IBD sufferers, an experience of which I have unfortunately been on the receiving end. Furthermore, it is not only hidden physical disabilities that need more awareness, but also invisible learning difficulties and mental illnesses similarly. Paddy McGuiness and his wife Christine Martine have openly spoken about raising their autistic children, and the abuse they have received from parking in disabled parking spaces, despite having their blue badge displayed, because their children can sometimes present as “neuro-typical”.  

This debate around the borders of disability has been exacerbated by the current global pandemic of COVID-19, and the catch-all phrase: “underlying health conditions”. This phrase was extremely common at the beginning of the pandemic, in which a death would be announced, and their status as having an ‘underlying health condition’ would follow. Every time I heard this, it filled me with dread. Not only is it an obscenely vague phrase, but it acted simultaneously as an excuse and a comforting nod to the public that it was only the unhealthy, the old, the weak who were dying. Before the lockdown, at university I routinely heard the phrase: “But only those with underlying health condition have died”, as if it was meant to comfort me. Instead, this repeated rhetoric was sickening, this implication that these deaths were somehow not as tragic as others.  

Not only this, but personally, my view of the disabled community and my position inside of this community was challenged once more. At the beginning of April I received a letter from a hospital, that I am no longer registered with, stating that I was in the “shielding” category and must not leave my room for at least 12 weeks. To be told this so formally, yet so remotely, and from a hospital I have not communicated with for over a year, was not only confusing, but ultimately distressing. Moreover, the concept that at aged 20, in a period of relative “health” in my life, that I daren’t leave my home in case of a virus was dystopian in its tone; but pales in comparison to those undergoing treatment and extreme illness in isolation.  

As lockdown has begun to be lifted, the majority of the harmful rhetoric around underlying health conditions and shielding has thankfully subsided, but the conversation around these issues should not. It is imperative that this discourse around disability is questioned and debated, as it is only then that the diversity between experiences of illness, disease and disability will be reflected in society. For people who struggle to control chronic illnesses, the loneliness of being housebound, and the deep-rooted anxiety around disease, is not restricted to lockdown, but will continue once coronavirus is a memory. Thus, as the pubs reopen, people begin to travel abroad and friends are reunited, we must remember those who must remain vigilant, and treat disability as the complex and multidimensional category of identity that it is.  

Isobel Warner is currently a student at the University of Exeter, studying English Literature. She is interested in the intersectionality of identity politics, the portrayal of disability and chronic illness in popular culture, and unconscious biases surrounding health and illness. 

Illustration by Mildred Cheng.