Despite having lived with a disability her whole life, it took becoming one of the unlucky few who experience symptoms long after they should have ‘recovered’ from Covid-19 that forced Áine Kelly-Costello to reckon with a different kind of disability experience.
I was born with a congenital condition with a fancy name that designates a diagnosis: I’m blind. However, my encounters with the medical establishment around disability/impairment have otherwise been almost non-existent. Apart from not fulfilling their primary function, my eyes have fortunately been perfectly healthy, I haven’t even needed to get fitted for glasses and to my knowledge I have no other underlying medical conditions.
Then, a bewildering pandemic came along, in March I got sick with strongly suspected Covid, and I’ll mark six months experiencing illness on September 21.
So, despite living for 25 years as someone whose access and inclusion tends to be marginalised, attempting to manage an invisible, morphing post-viral illness that is sticking around for a while has been a reckoning with a kind of disability experience that I ignorantly had not given great consideration to before.
Where I lived, in Sweden, I couldn’t get tested back in March, so I have no virus diagnosis. But say I did? My symptoms are only now about to cross the threshold of having lasted six months or longer. Our most authoritative international disability mechanism, the UN Convention on the rights of Persons with Disabilities, recognises that disability is an evolving concept, but also states that it is “long-term”. So, from a medical and legal point of view, I’m not disabled by Covid, at least, not yet.
To me, disability is much more fluid. I feel disabled by my body on days where fatigue makes eating a chore, and where stringing together enough focus to send a quick email – let alone tackle my thesis – is like wading through mud. I have wonderful family support and can financially afford to spend time recuperating. But even on days when I’m not experiencing additional symptoms like extreme emotions, fever, pain and inflammation, I still feel the pressure of a world where I have been taught that productivity is prized.
I feel disabled by the fact that when I say I’m free on a certain day to join a Zoom with my colleagues or just chat to a friend, it often comes with the caveat that, if possible, I will move it if I get a flare up and I think my body can’t handle it. I know I only succeed in asking for this adjustment at all because I have spent enough time reading the generous wisdom passed down by people with other chronic illnesses to know that the best thing we can do is honour and listen to our bodies. And still, I feel discomfort and shame, because I know I live in a world that values planning, which isn’t used to making room for prioritising our bodies and our minds and that lives by the 24-hour clock. Even with fabulously understanding friends and colleagues, with every new person I explain to, I have to remind myself that making space for my body should not be embarrassing. Rather than an inconvenience, I am someone who wants to bring the people I am honest with into a type of accountability that is about necessary pacing and self-care before it is about clocks.
Compared to many Covid long-haulers who were previously non-disabled, I perhaps more willingly embrace a terminology around disability because I have already been immersed in many of its rich communities and creative, resilient ways of thinking. A lot of long-haulers may understandably associate disability specifically with getting a medical diagnosis of chronic illness. And let’s face it, none of us actually want our symptoms to be chronic, even where we are actively seeking medical validation of their existence. If the actual symptoms and complications weren’t deterrent enough, notions of disability as brokenness, undesirability, burden and victim, built up over a lifetime of marginalising and oppressing disabled people, are also well baked into us all.
And yet, when I think of the Covid patient-led research group that in six weeks produced a preliminary paper detailing long-haul experiences, when I think of the 60 people with long Covid who dedicated themselves to talking to the WHO after struggling for mainstream recognition for months, when I think of all of us being there for each other through our uncertainty and illness, I am fiercely proud of the grit and resilience and persistence these communities have shown. I am proud and thankful that, through support groups like this one, I have found more courage to speak out than I otherwise would have, such as in writing this piece. These groups assure me that my wild, disjointed, discombobulating set of symptoms and experiences are valid, that some involve my brain but that does not mean they are imaginary, that even as our experiences fail to exist in many official stats and records, that we are here and we count.
This is the kind of validation the Disability Pride movement seeks to create. For three years in a row, starting in 2017, I put fingers to keyboard to try to unpick some of both the untapped potential and messy complexity of Disability Pride. I have called for imagining collective pride, I have interviewed Disability Pride organisers and I have shared an example of my own struggle disclosing disability and a vision forward.
I had no intention to write yet another piece this year, until I got Covid-19.
I’m so glad I have found long Covid groups to add to the disability communities I was already part of, because I’m sure my reckoning with new ways of experiencing disability is far from over. As long as we are there for each other, uplifting each other and affirming that we count, I’m a lot less worried about whether or not we call it Disability Pride.
Áine Kelly-Costello is a disabled campaigner and writer from Aotearoa currently based in Norway. She has helped organise Disability Pride Week among other disability community-building initiatives.