This is Us
Disability Pride has been complicated for me and I know that’s been true for many. What has helped me feel less alone this month is reading funny, coruscating, joyful, questioning, wise and angry writing from the intersectional and fiercely bright disabled and chronically ill writers here on Substack.
A couple of weeks ago I woke at 3 a.m. (yes, me and cortisol really are best buds) with an idea to mark Pride. I wrote to some of my favourite writers to ask them to send a photo that captures something meaningful about their life and a paragraph to accompany it. The idea behind the title, “This is Us” is that we are linked by disability, but are also individuals with our own priorities, interests, passions and challenges.
I hope you will find some amazing authors to subscribe to (links to their Substacks in red) and I hope that we will keep chatting and growing and finding community. I laughed and cried reading the contributions below. So, Happy (and Angry and Grieving and Lonely and Hopeful and Inflamed and Bed-Bound and Defiant) Disability Pride and without further ado, in the order that they were sent to me….
This is Us
Lorraine Boissoneault I adopted my two cats, Miel (the tabby) and Souris (the black cat) just a few weeks after my second endometriosis surgery. It's been one of the harder seasons in my life, despite many good things happening--my book out, the opportunity to connect with old and new friends. When I've needed to rest and recover, stay home when I'd rather be out doing something else, the cats bring me so much joy. They are playful and cuddly, curious about the world, and able to find excitement in small moments of every day. They remind me to stay grounded when it would be all too easy to swim away with my thoughts.
Jamie Hale This year, I designed a bespoke case for my hearing aids with Auzi. That sounds like a small thing to pick out of a year, and it has been a difficult year to pick things out of, but that moment spoke to a lot more about me than just the existence of a bespoke hearing aid case. It spoke to my starting to feel comfortable in deaf spaces, and with other deaf people who shared experiences with me - where we all listened and attended to one another in ways I do not find in the hearing world. It also spoke to my desire to make my hearing aids stand out - a response to the years of shame and discomfort around deafness and what it represents in my life. I want my hearing to be made visible, because I want the need for adjustments to be made visible, and this excites me for that reason. I was so nervous, as a wheelchair user, to go into that space - the only one, as always - but was actually made so welcome. When I think about joy, I think about being in community spaces, and carrying out community activities, and this opportunity represented that for me.
Chronically Seeking Joy (they) There is a special kind of joy in growing your own food that is hard to describe. It’s a mixture of pride at having achieved something and awe that those tiny seeds you planted in the ground have produced beasts of plants capable of feeding you many meals. Nothing is sweeter than the taste of the first tiny strawberry in May, plucked right off the vine and gobbled down before you’ve even reached the house. The melt in your mouth potatoes, releasing soft carby goodness on your tongue. Imperfect little carrots that needed to be scrubbed for longer than it takes to eat them and chard leaves carefully washed of patches of white leaf miner eggs. It’s slow growing and slow to lovingly prepare it. Growing your own food is humbling, it teaches you how much effort and manual labour goes into producing the food we eat - how easily we take it for granted. It teaches me to be patient. To be grateful. To enjoy every mouthful. Growing my own food reminds me that things in my life can still grow while other things are shrinking.
Flare and Flair Back in June, just a few weeks ago, I wrote this essay, A Chair, Some Wheels and an Existential Crisis:
The very next weekend, on Father’s Day, I took the wheelchair out for the first time. Surrounded by my husband and two of our adult kids seemed the safest first outing. It was already hilarious as we were going to the National Railway Museum as a gesture of love for my train-mad husband so me and the kids would always have found some sort of mischief to occupy ourselves.
Turns out pushing your mum around in a wheelchair, no matter how much she hates it, is fertile breeding ground for mischief. I was ‘zoomed’, abandoned at will and wheeled into the children’s reading nook - all for entertainment and all with the purpose of making sure I saw the fun rather than the vulnerability in being in that chair.
This photo sums up just how silly we were - yes, my son is intentionally cutting off his head - he’s tall, I was tiny - we found it sidesplittingly funny. My point, in amongst all of this silliness, is that the wheelchair doesn’t signal the end of my freedom. It actually opens up my world so much more than it has been these last two decades. If it also provides more ammunition for taking the mick out of me (within the loving confines of my family) then I can live with that - laughter is the lifeblood of our tight little unit after all.
Jessica Curry Hey, it me! Did I cheat and put two photos in? Yes! Am I a child of the 90s who loves a before and after transformation? Also yes!
Dan shaved all of my hair off on New Year’s Eve. Don’t worry, it wasn’t a Gone Girl type scenario-it was at my request. I had become increasingly depressed by how hard it was to wash my hair, both in terms of mobility and energy, and I have always found going to the hairdressers exhausting, boring and painful. So I made the decision that the hair had to go. After a lifetime of people pleasing and performing wellness, it was a relief and a joy to say to myself and others, “I am ill and I’m never going to get better.” The spiritual carpet finally matched the drapes. Shaving my head was oath, warning, re-set, surrender, statement, vow. There is no going back.
vōx This photo represents a big challenge, as well as joy, for me this year. Something that’s been wholly behind the scenes! I’ve been recording vocals for my second album, one that’s entirely about living with chronic illness. It’s an album I’ve been working on for over 4 years now, and I’m so proud that it’s almost done. It took me most of this year thus far to record the vocals for it, as I can’t usually sing more than 30 minutes a day.
In this photo, my partner Cam is listening to some of my work. He’s always been my biggest cheerleader creatively. My dog had opinions too, mostly that this listening to music activity didn’t include enough snuggles.
Lisa Andradez This year I published my first poetry zine. It was written from the persepective of life with a chronic illness and contained 11 poems. I made it myself and had 50 copies printed. I have sold 14 copies, 7 of which were downloads and not physical copies, so I still have a bunch of them in a cupboard at home. But I am proud of my little achievement, and who knows, I may still sell lots more one day. I haven’t really publicised it as much as I could have so there is a lot more I could do.
I wanted to do this to prove to myself that I have something to say and to begin to heal from the trauma of getting that diagnosis, which told me that life as I knew it was over—far from it. I have done more writing since I became chronically ill and met some fantastic people in online spaces. While my physical friendships have decreased significantly to almost zero, there are some wonderful people out there who have been a support and encouragement when I have needed it the most.
Thanks to this publication I have also begun to write a book that has been a dream of mine for a very long time. I am not sure if anything will come of it, or if I will sell more than 14 copies, but I am enjoying having a purpose and a plan, and I hope that, even if this book does not succeed, it will lead me on to bigger and better things. I am living my best life with chronic illness and I will not let it define me.
Sophie I’ve had ME for ten years now and I’ve noticed how much smaller my life has become as a result. turned 35 in February and decided that this was the year I wanted to challenge myself to try something new and different. Something that was just for me, where I didn’t need to explain my illness or what I’d been through. I was bored of playing it safe and staying stuck in my routine of being sick. So I decided to try stand-up comedy for the first time. I’ve never been much of a public speaker, I have terrible stage fright at times, but figured, “hey, if I can get through the last ten years, I can get through five minutes on a stage.” I sat and waited for my name to be called. The five minutes passed in a blur, but it was the most fun and the most freedom I’d felt in years. Disability teaches you how unpredictable life is. But it also teaches you to seize life whenever, however you can. Life has meaning only if we allow that meaning in. But it’s down to us — the disabled person — to find those moments and make them count. Otherwise, we are just ill. Here’s me in all my glory up on stage, basking in the spotlight, feeling very proud of myself!
No Longer Auditioning I’ve found a lot of women often grieve the appearance of their body changing. The rolls, the wrinkles, the grey hair. However, I’ve spent most of this year grieving what my body can do. The body that could deadlift 110kg, the body that could climb Helvellyn then celebrate at the pub, downward dog on a paddleboard in the middle of a Menorcan lake, could run an allotment growing food for her family, do a 20 minute stand up set. All this while teaching classes of 30 children Monday to Friday.
But actually while I also miss the small freedoms. Picking up a dog lead and taking my dog around the block. Watering the plants. Peeling veg. Bathing my two year old son….bathing myself. All of these requires aids and equipment, rest periods planned in, pacing and often someone else’s help. Small acts like these shouldn’t be logistical challenges. But they are. Such is my disabled woman life.
I have chosen this photo of me walking my dog with my rollator. Something i hadn’t been able to do in months. Yes it’s just a dog walk. But for me it’s being able to step out of my world of being “cared for” to being the carer. From being inside to outside. It’s conversations with neighbours. It’s nature not through a window pane or a tv screen but face to face.
Many people may look at mobility aids as symbols of “can’t”. A representation of a body trapped in what it can’t do. I disagree. Mobility aids are freedom.
Jessi Parrott When Jess reached out about this brilliant project, I knew I needed my contribution to feature nature. But I ideally wanted to touch, too, on how my disability pride is powered by the vital force of friendship. So imagine my delight when this week brought those themes together! My dear friend J, who is another disabled, neurodivergent, queer and trans “theatre bod” (their words), and I are both having somewhat rough patches. We also both seek solace, and grounding, in getting outdoors.
But, for some similar and some different reasons, doing so is often difficult – and downright inaccessible – for us. This week, though, stars and spoons aligned. So we spent a restfully rambling afternoon and evening entirely losing track of time as we logged local flora and fungi for a project supporting biodiversity research. J helped wrangle my wheels when the terrain got tricky (we also have a mutual passion for parkour!) and I pointed out plants I was primed to spot from my seated position. Then we pressed some of our specimens (as shown in this photo, using what I now realise was an additionally appropriate book, combining theatre history and disability representation through a Dickens adaptation).
Rebecca The hammock in my yard has always helped me find peace in the chaos of chronic illness. In the Spring, Summer, and parts of the Fall, I try to relax in it as much as possible. Summer in particular is rough because I have POTS which brings heat intolerance, especially as it keeps getting hotter each year. There are some days where I unfortunately just have to stay indoors with a portable fan and ice packs. But I always look forward to the weather improving again so I can enjoy the hammock. Occasionally, if I'm lucky, I get to see the rabbits in my yard. In addition to relaxing, it's a nice place for reading and writing in addition to just observing nature. It's so important for disabled people to have things that bring us joy in a world that often tells us disability and misery have to co-exist.
Celestine Fraser In May, I took the longest flight I’ve taken since I first became ill to travel to Canada to visit one of my oldest and closest friends. We grew up together, but she moved to Ottawa a year and a half ago. For many years, when I was too unwell to leave the house, she would visit me in my bedroom, and she’d sit on the end of my bed as we caught up. So obviously it felt really surreal to be on the other side of the world with her, going on walks and driving around. I had the time of my life! The trip gave me the confidence to push myself out of my comfort zone, and it was a good reminder that people who love and know you really well can make all sorts of things possible (and accessible) for you.
Illness and Insight This photo was taken in July 2026 at Rockaway Beach in New York. To me, it represents a new chapter in my relationship with chronic illness. Last year, I grieved the life I left behind when I got sick. This year, I have stepped into my new life and found joy and freedom.
A large part of what has made this possible is learning to manage my symptoms more carefully, balancing my adventures with radical rest. I thought I would never experience a walk along the beach at sunset again. But my careful planning, along with this wheelchair accessible boardwalk, made that possible. These days, my life feels full of possibility.
A huge thank you to everyone who contributed. Liking, subscribing and re-stacking are political acts of support, so if you’ve read this far please don’t be stingy with those buttons!
Wishing you all ease - well done for getting through the month x
What a wonderful collection. Thank you so much for putting this together and for including me!
This came out so well, I love it so much. I really enjoyed reading everyone's responses. Thank you so much for coming up with this idea and for including me!