Finding Disability Pride in a Global Pandemic

Until recently, I have always actively avoided attaching myself to any notion of disability pride. If I’m being completely transparent, I hoped that this defiance might somehow allow me to wake up one morning with the ability to walk — or even stand. There is no logic to this thought pattern whatsoever, I know, but I do still have dreams about it sometimes. It’s hard to describe what it feels like to wake up from these places with the briefest hope that they have become a reality. If you were wondering, the first thing that I’d do in this instance would be to find my parents and shout “surprise!” in the most casual tone that I could muster. Afterwards, I would immediately go for a shower. Independently. What a wild concept. Also, I have always thought that jumping looks like so much fun, even if only on the spot. Is it fun? The simplest of things, really. Yes, I have planned it. Just in case. But when that doesn’t happen, what am I left with? I have spent half my life genuinely believing that it was impossible for me to happily exist in a disabled body. Let me tell you, friends, the ugliness of this pandemic has led to the most beautifully wild and liberating revelation: I was wrong. There will always be a lot of noise to the contrary, but disabled lives are full. Disabled lives are good. Disabled lives are worthwhile. Disabled voices are important, even when (and perhaps because) policy consistently works to suggest otherwise. So, let’s talk about that, please.

Here we are again. In the United Kingdom, most restrictions are officially set to be lifted on July 19th, despite warnings that this could cause our case numbers to reach one hundred thousand per day. But most clinically vulnerable people have been fully vaccinated now, so who cares, right? The amount of times that I have heard this argument within my own social circle is both disappointing and not at all surprising. The fact remains that recent research raises doubts over vaccine effectiveness for immunocompromised people. In all honesty, I have been trying really hard to simply avoid fully processing this information and stay positive about the potential outcomes, which may sound irresponsible, but it’s also deeply important to my emotional stability. Because what type of message is this supposed to send, really? From where I’m sitting, the answer is a painfully obvious one: nobody cares. The lives of disabled people are inherently less valuable than opening nightclubs, for example. Once again, it has been decided by the people in positions of power that we are disposable. Well, excuse me if I’m done being quiet about this bullshit.

A screenshot of a Tweet by Karl Knights, which reads: “Not gonna lie, I am very much not fine. Having the government, and your peers, just outright say that they don't care if disabled people die is as enraging as it is upsetting.”
I am leaving this here because I have A Lot of feelings. The world is especially rough for disabled people right now and it’s okay to just sit in the sadness for a while, if you need to.

See, having a disabled and/or chronically ill body isn’t easy, especially in moments such as these. The subtle ways in which society is ready to tear us down for its own benefit can become twisted into our own brains and leave irreparable damage. But guess what? The idea of getting on other people’s nerves by existing loudly and happily motivates me more than anything else. This year, that is enough to fill me with pride, which I haven’t experienced before. I mean, let’s be real. It requires a lot of Bad Bitch Energy not to give up on yourself when your needs are very clearly seen as inconveniencing the general population. Similarly, it also requires a lot of Bad Bitch Energy to take up space in the rooms where difference is not welcomed. News flash: if you’re reading this, you haven’t given up on yourself, either. What a powerful moment.

To the non-disabled readers, thank-you for caring enough to listen. Thank-you for reaching out and offering solidarity. You give me hope that the future can be better.

Zoe, thank-you for always believing in me and filling my messages with words of wisdom. You are brilliant and bright, even on hard days. Owen, thank-you for teaching me the power behind being unapologetically myself. I love you. xxx

7 thoughts on “Finding Disability Pride in a Global Pandemic

    1. Sorry that it’s taken me some time to write back, my health has been slightly more unstable over the last few days but I’m finally feeling a bit better now. Anyway. Thank-you! Your presence is important in every room.

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      1. Oh, you never need to apologize! Our bodies like to challenge us every day. I hope yours behaves and continues to go in that direction. Fingers crossed for all good things. ❤

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  1. I just wanted to check in on you. I know the heat is wreaking havoc! Are you laying on a bed of ice packs? Are you dreaming of Greenland and Malamute doggos mushing through the snow? (I personally would never dream of snow, having done my time in the frozen tundra, but to each their own.) Wishing you rest and relief.

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    1. Hiiiiiii, friend. I was thinking about writing another post soon, though I’m running a little low on inspiration. I am actually dealing with the heat pretty well, for a Brit, lmao. I have spent the last couple of weeks trying to decide if I’m brave and/or good enough to try out some freelance writing work. I really would like to have a proper life of my own, you know? & I currently don’t get paid anywhere NEAR enough for that. Ugh, the woes of the system. But I’ll figure it out. Cases of The Rona are higher than ever in my area right now, which has made me incredibly anxious. But!!!! Some cool news. The other day, I managed to shower pretty much independently for the first time eVER and I still can’t believe it. This is probably the first time that I have felt like a real adult, too. So, I’m doing the best that I can.

      I hope that you’re also doing okay. I’d love to hear all about it 💜

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      1. Showering alone eVER is amaZING!!! Were you singing too?? Or just concentrating so you wouldn’t break a body part? Glad to hear the heat wave isn’t getting to you. I was just thinking about the last time I was in the UK, which was July of 2012, in time for the Olympics. It was a madhouse. I had the bad luck of flying into Birmingham behind 3 planes from China and no one knew how to fill out their cards. But it was really cool because I got to see the torch ran twice (and one shot I got it looked like the guy’s feet didn’t even touch the ground!), and everywhere we looked we saw the official Olympic rings. I left 3 days before the events started. That was also the year there was really bad flooding. For part of the trip we had driven up to Edinburgh and we made the trip at night, so we were hydroplaning while we were counting the turns from the directions on the GPS for the roundabouts. So we’d be careening around the circle, chanting “One, two, three, four, turn!” in complete darkness and holding our collective breaths. The friend that was driving was a born and bred Brit. None of us felt safe.

        I understand about wanting to make a living wage. Right now my income is what I used to make back in 1993. I actually would have been okay if our flats would have stayed affordable here, but in 2018 they increased greatly, and of course now I only have enough for rent and not food. I wish I was joking but I’m not. My friends tell me that I should get a job – as if that is a new concept to me – and I have to explain that I can’t keep regular hours and I’m in a lot of pain. I used to work at a corporate job and have 21 years of experience in a particular field, and so I think they don’t know how to take me not working. But gosh, wouldn’t it be nice to have a livable income AND be disabled? I don’t think we’ve ever seen that before, anyone, anywhere. If you pursue paid writing, is there a certain area you’d like to start with? Do you think you can do research and writing on topics that you know very little about? Have you thought about how you are going to build up a portfolio that isn’t based on your blog?

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      2. I was absolutely just concentrating on not injuring myself, although maybe I can work my way up to singing (badly)!

        Thank-you for always sharing your stories with me. I’m glad that you made it through these adventures unscathed — I’d love to see the pictures sometime!

        I TOTALLY know what you mean about the financial stuff. It breaks my heart. I think that I could only really practically do something from home, so I’m just trying to figure out my options and believe that I have enough to offer. My brother earns quite a lot of money as a mechanic and my sister has recently qualified as a teacher, so they’re both pretty stable and I don’t want to be left behind. I don’t want my life to be defined by the limitations of my body, you know? Ugh. It’s probably a silly dream buuuuuuut I can’t help myself. I really just want to live a life with my partner, it’s hard to watch my brother do that so easily. I think that I’d most comfortably start with writing about disability, since it’s all I know. But I would also be happy to write about anything, really, given the chance. It’s what I used to do at university, anyway. I have no idea about building up a portfolio, though. That all feels very scary and adult!

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