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Photo: Getty Images
Photo: Getty Images

SocietySeptember 16, 2020

How becoming a Covid long-hauler made me rethink disability

Photo: Getty Images
Photo: Getty Images

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.

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toby how to bridge the gap siouxsie wiles
toby how to bridge the gap siouxsie wiles

SocietySeptember 15, 2020

Siouxsie Wiles & Toby Morris: Bridging the gap with someone who’s been pulled in by disinformation

toby how to bridge the gap siouxsie wiles
toby how to bridge the gap siouxsie wiles

Don’t approach the task as a battle to be won, but as a conversation to get to the underlying reasons why someone might have been susceptible to the false information in the first place. 

Last week marked six months since the WHO declared Covid-19 a pandemic. How the world has changed in that time. Here in Aotearoa we are doing a really good job of working together to save lives and protect as much of our economy as we can. With that, though, we’re seeing some influential people make real and concerted efforts to disrupt our success for their own gain. Hence the recent protests

Recently, Toby Morris and I explained how false information is being weaponised against us all by people pushing their own agendas. And because of the way social media algorithms are designed, some of our family and friends are being pulled into believing that disinformation, all while thinking they’ve “done their research” on the pandemic.

I’ve started getting messages from people asking me what they can do to help their loved ones who’ve fallen down the disinformation rabbit hole. Before I explain how to try, it’s worth remembering that you can also help to slow the spread of disinformation by making sure you practise your own “information hygiene”. Tempting though it is to share something in outrage or to mock, don’t. The fewer clicks and shares that stuff gets, the better.

Alongside that, learn more about the crucial role the media and social media platforms play in all this. Media sometimes put a negative or fearful spin on things – rather than framing things in a positive way, it all becomes very doom and gloom. Despite New Zealand having one of the most successful responses to Covid-19 in the world, the way some pundits describe it, you’d think we were failing. That can leave people feeling like it’s not worth trying to stick with our elimination strategy. 

As for social media, if you can, check out the new Netflix documentary The Social Dilemma.

Bridging the gap

Despite what you might think, people don’t believe false information because they’re stupid. We humans are complicated, and we often hold a whole bunch of (sometimes contradictory) beliefs at the same time. Those beliefs are determined by our values and our lived experiences. No matter how rational and objective we think we are, we don’t process new information by weighing up its pros and cons. Instead we filter it through our values and beliefs first. That means that if a piece of information fits with what we already know or understand, then it feels good and we accept it. If it doesn’t fit with our beliefs or values, then it can feel wrong and so we often reject it. Just being aware of this can help you better understand information that challenges your beliefs.

The reality is, there are many communities that have had bad experiences with government departments and the healthcare system in the past. We shouldn’t be surprised if they’re taken in by people preying on that. Another complication is that we tend to accept most information we’re presented with as being true unless we have a clear reason not to, like it not fitting with our beliefs or values. That’s why it’s so frustrating to see so many people in positions of influence, including medical doctors and scientists, creating or spreading information I know is clearly false. Some of them may themselves be misinformed, but others are clearly lying to further their own agenda. 

What all this means is that if someone you know has fallen down a disinformation rabbit hole, you won’t pull them out just by debunking all the disinformation. Doing that is like building a massive wall between you both, and that will only reinforce their beliefs. Instead you need to approach the task not as a battle to be won, but as a conversation to get to the underlying reasons why someone might have been susceptible to the false information in the first place. That means asking questions and really listening to their answers. What you also need to find are the values you share. This will give you a place to build from. 

There are plenty of studies that show we’re most influenced by the people we care about. That means you’re an influential source of information for the people closest to you. Approaching the person you’re concerned about with humility and kindness, and reminding them of the values you share, gives you the best chance 0f helping them understand that they may have fallen for someone else’s agenda. There are no guarantees it’ll work, but you have a better chance of helping them than I do.

If you want to do a bit of a deeper dive into this topic, check out Dr Jess Berentson-Shaw’s short and excellent book A Matter of Fact: Talking Truth in a Post-Truth World. It’s available as a very reasonably priced e-book here.

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