Finding my disabled joy
This was originally posted on the Get Well blog, and written by one of our founding members, Evie, who is also a member of Get Well Circus.
About the show: Exploring the experiences of chronic pain, endless waiting rooms and unsolicited medical advice, Get Well Soon is a triumph in finding the humour in complex and critical conversations around our healthcare.
Circus has never felt so frustratingly cathartic, as this new collective led by creatives with chronic pain, illness and disability, shout with science and perform with sharp comedic empathy.
Whether you’ve seen too many doctors, you are a doctor, or you love someone who's going through it: Get Well Soon will inspire and advocate for the strength behind a diagnosis (and the circus of getting one).
Finding my disabled joy. So for a long time, the concept of disabled joy seemed theoretically plausible… I saw others who managed it, revelled in it, were liberated by it. I knew it should be possible, but it felt impossible for me, completely and utterly unattainable. Like the best I could hope for was acceptance and a bigger box around my grief, and that the best my life would be again would be to at least not be actively wishing to not exist.
[image description: a tweet from Lauren Herschel @LaurenHerschel which reads "Replying to @LaurenHerschel So grief is like this: There’s a box with a ball in it. And a pain button. And no, I am not known for my art skills." alongside an image of a square with a circle in it which nearly fills the whole square, with a red rectangle drawn on the side of the square. The image is labeled "The Ball and the Box", the circle is labeled "ball" and the red rectangle is labeled "pain button". The drawing style is scribbled, using felt tip pens.] If you're not familiar with the concept I'm referencing, you can find the original twitter thread here] So it has come as quite a surprise to me to realise that I’m now living an experience of disabled joy, in no small part due to this project and my position as a Midsumma Pathways participant. A few weeks ago, I told you this story about how I saw my GP on my birthday because that was the best I could hope that day to be, due to the relative euphoria of a compassionate and validating doctor… Well, as a neat little serendipitous inspiration to give me something good to write about for International Day of People with Disability, that GP phoned me today about some minor and irrelevant clerical issue I haven’t seen her since she left for maternity leave at the end of 2019, and after I clea.red up with her that the clerical issue was inconsequential, I had said in passing that I’ve been doing better than I was when we last spoke. I could hear the happiness in her voice upon hearing that, and she asked if I wouldn’t mind catching her up about how I’ve been, just because she wanted to hear about me, and that she was really excited to hear I was doing better. Now, this is a doctor who I haven’t seen since she’s been back for a handful of reasons (less immediate need for a doctor right now, I have been seeing a new GP and they’re non binary and that’s amazing), but the most relevant one is that it takes over a month to get in to see her; she’s in hugely high demand, and a new mum, but today on the phone she wanted to use her own time to hear about how I was doing, and it was wonderful and cathartic to get to tell her that actually I’m doing a lot better, that I’ve developed some really good coping strategies for pain flares, that my pain isn’t affecting my mental health so much, that I’m getting back to feeling physically robust in the way I did prior to my (very traumatic) surgery in January 2018. It was such a lovely, validating and valuable experience; not only because it caused me to take stock of and reflect on all of the things that have been improving, but also to have that connection with a person, that specific version of a relationship that is a doctor patient relationship in the context of a disability or complex medical issue. I think for a long while, I struggled to connect with the idea of disabled joy because whilst I could accept that, yes, The Social Model Of Disability; therefore it is society’s failings and not mine that make my condition a disability and affects my life the way it does, but the fact is, if ableism were somehow solved, chronic pain still fucken sucks. And knowing that I have to live with that pain for the rest of my life felt like a barrier to being able to feel happy, in general, and definitely a barrier to feeling happy in my disability; about my disability. I also came across this video this morning, and it gave me an overwhelming sense of euphoria—a sense of joy, disabled joy—not just vicariously, to see someone else living their disabled joy, but also the feeling of connection to Georgia, through our shared identities and communities, whilst our individual disabilities are completely different, the connection we have through the disability community and the queer disability is real, and it feels really good to see people from my community living their best lives and owning their queer, disabled joy. I realised maybe this was the first time I was seeing someone else’s disabled joy and not feeling the sting of complex negative emotions; of not being enough, that I couldn’t find joy in my experience, that I would wish to be cured if I could, that I was a “bad” disabled person with internalised ableism for wishing that I didn’t have to deal with my condition. I realised that not only was Georgia’s joy my joy, but that I feel much the same way that she does about a lot of the things she had to talk about. Being queer and disabled feel like two sides of the same coin. Either way, it’s being forced to reject social norms and expectations because of something inherent to me. Either way, it’s hard not because being queer, trans, disabled or any other form of marginalised identity is bad, but because society has taught people to treat us badly for those deviations from the norm, and is organised in a way to penalise us for our innate, natural human variation. I realised that it can be absolutely true that chronic pain fucken sucks, and it can still be true that I can find and build joy from my experiences as a disabled person. I can enjoy the way disability has changed me, and still honour the grief I've lived. This project is obviously a glorious example of value and joy that we have built out of our experiences, and the Midsumma Pathways has been a crucial experience for me to really feel living, creating, working, learning and just existing outside of the expectations of ableism in a tangible way, that isn’t a space I’ve worked to create for myself. It’s amazing to realise that even as I tried to be gentle with myself, even as I raged about the discrimination I’ve faced in medical, academic and professional environments, and tried to internalise the framing of the social model of disability, just how much of my trauma was rooted not in the experiences from within my body, but from the expectations and devaluation placed on it by people and society, and how liberating it has been to be able to process that and really experience what it is like to exist outside of those confines of ableism. This process has been excruciatingly hard work, and I’ve spent a lot of time feeling like it wasn’t possible at all, and all I can wish for in the world is to make something that stops other people from needing to go through this at all; a world where we can celebrate our diversity and my community can all access their disabled joy without needing to work this hard to achieve it.
[image description: Evie is standing in a large ficus tree, they are wearing red trackpants, a baggy blue knit jumper, a yellow beaning and a scarf and smiling, looking into the distance, there is a large branch that cuts across the foreground of the image, and lots of different foliage in the background]