Article
Republished with permission.
For the audio version of this article, visit the original post on Substack.
Hey, wuh happen?
One of my jobs is recording audio pieces for Able Radio on Main FM. I haven’t set foot in the station physically since before the pandemic but being an inclusive workplace and also legends, they’re fine with me creating at home and sending in content. The station has a grant to fund the show, and some of that funding goes to me whenever I make something for them. I’m always on the lookout for great stories for Able Radio.
An old community radio buddy shared in an online group we’re in that they’d been working on something cool related to the disabled community so I recorded some interviews about it. Humdinger is a social enterprise, co working space and recording studio for both audio and audiovisual content. Lots of comedians record there and one of the goals of the business is to be accessible to anyone who wishes to use the space. They’ve teamed up with Powerd Media (not a typo) and have a few projects bubbling away. After I spoke to one of the creators Ashley Apap about her excellent show Scamp, my old pal Emma and the associate producer Lucy, I packaged it all up for Main FM. Then I got an email or a DM, I can’t remember, something about a Zoom about a neurodivergent thing from Emma and also Lucy. So I turned up to the Zoom without really reading the message/s properly and then after the Zoom I started developing a talk show? Question mark intentional. Sometimes I can’t work out how to put my shoes on, other times I trip over and obtain incredible work opportunities.
This is how most things happen for me*. I turn up, I hope for the best, generally good things happen, I’m often confused but I’m all good once I have a microphone. I find them grounding and it’s helpful to have purpose. In this Zoom when Lucy asked if I wanted to do this, I laughed in an unsettling and unhinged manner for many consecutive minutes. This is what happens in my body when I get good news. I am mentos and coke, colliding with the resulting joyful explosions.
*Also obvs having very high standards and working my ass off.
Last week all the work and planning came to fruition and we filmed six episodes over two days. I took eight outfits (just in case I spilled something on one and another one didn’t work) ironed by Mrs Peach so I would look nice for the internet telly (thank you Mrs Peach) and Cool came along too because she generally goes where I go. I brought some things from home to add to the magnificent set created by Bec Petraitis and sat under giant lights in a massive studio while having the deepest and most intensely enlightening conversations of my entire life. Not that it’s a competition, but it felt like a culmination. The set looked like the inside of my brain. Pink and sparkly and lots going on, many textures, comfy chairs, dog hair and me blinking madly in the eye of the storm.
It was sort of like doing six weddings back to back. If you’ve been to one of the weddings I’ve officiated you will have seen me in Super Focus Mode, being on Details Nobody Notices that Make a Huge Difference and Space Holding for Humans Who Would Benefit from Presence and Grounding. In the moment it is electrifying and interesting. I excel under the pressure once I have a handle on things. Afterward I feel like I’ve been run over by a truck or three, for quite a while.
I digress. I wanted to write today about what all of this means. I’m relatively new to neurodivergent understanding, and by that I mean figuring out why I am the way I am. Why I’ve always felt out of place no matter where I am, and why quite a lot of life has been impossible and/or excruciating. That’s not to say life has been bad. On balance I am incredibly robust, have a pleasingly wrong sense of humour, can get along with most people and have found pathways where I feel like my best self. There is love and laughter, joy and awe every day.
This is one of the things I’m starting to understand about neurodivergent culture, after all those chats with some of the most marvellous folks, what might sound like a whinge to the neurotypicals is what we do to share where we’re at. We’re not telling you our stories to illicit sympathy or to moan, we’re offering you a window into our experience. How you receive that is often informed by neurotypical norms. Don’t complain when other people have it worse than you, don’t draw attention to yourself, don’t be disruptive, don’t don’t don’t don’t. Just suck it up, be quiet and let the ableist hellscape impact you in all the negative ways as long as we want and make sure you don’t ask us to change for you. Don’t bang on, don’t take up space, don’t follow your instincts. Don’t love in the way that feels natural for you. Suppress and fold and change. It’s the only way to be safe.
I did a cool thing last year where I described my experience. Not in a complain way, definitely in a clarification of the way life feels kind of way. There was a short clip on Instagram and shit comments on the post were along the lines of “these people make everything wrong with them their entire personality”. Sure, Jan. I think you’ll find my personality is being correct all the time and having a stellar rack. If only you’d watched the whole thing, you may have learned something.
I’ve sat with people as they opened their hearts and stories up to me and to some scary lights and cameras, and I’m here to tell you that there’s nothing bad about any of these people. We shouldn’t have to push down our experiences for anyone’s comfort. What needs to happen is a revolution of being open to each other and taking things on board. What if the neurotypical peer pressure from dead people wasn’t the only way to interact? Spoiler alert: it isn’t!
Unmasked, the show we made, is a window into that. Even while talking with my guests, I noticed ways I’ve been masking my entire life. I named them as I noticed and we acknowledged that and kept talking. We discussed stims, masking, precarious work and stability, the ways we thrive and the ways we express ourselves.
In between taping episodes on day one, I sat in my lovely greenroom (fancy!) with all the lights turned off and listened to Adalita’s I Want Your Love on repeat (it was my soothe song last week) and played my matching pictures to other pictures game on my phone. I decompressed, changed my clothes like Beyoncé and did it all again. I sweated PROFUSELY because I was scared of fucking it up.
Who am I to be doing this? I knew I’d have a melty D in the leadup, so arranged appropriate therapeutic supports to scaffold around that. I’m used to my voice being recorded, used to having my photo taken at weddings during the ceremony. But being on screen is a completely different thing. I am a massive unit. I’ve always been a majestic chonklord (thanks Nell for that excellent phrase, which I initially heard as she described her toddler, resplendent with croissant like roly poly arms) and over the last few years I’ve been on not one, not two, but three medications that create The Hunger that Never Ends. I’ve performed naked on stage twice and the main rule I gave myself when writing what I would say was to not give any justification or defense of my body. I know who I am, I know my heart is good, and that there is more of me to love than most people have on board. That was fine when standing and sitting on stage for 45 minutes facing a very safe audience. But being on the internet for the rest of time (or until Station Eleven comes true) is a different kettle of fish.
I’m in a pretty nice community bubble. The taunting and cruelty of the earlier part of my life is a distant memory, and although the trauma hangs around I don’t really worry about the size and shape of my body. This body is strong and beautiful and manages so much really well. I’m alive, thanks to the medications I take, and I don’t feel the need to consider the alternative. The internet is a bit scary though. People really do be jerks sometimes, and my heart is a tender one.
The thing is though, it’s absolutely fucking time a mega fat, trans, non-binary, physically disabled and neurodivergent person hosted a talk show. Anyone who uses negative commentary based on something as ridiculously irrelevant as the way a person looks is a deadshit loser and it says more about them than anything else. Crack a book, babes. That’s over. We’re moving on. It’s time someone like me was visible and creating the discourse. If there had been people who were given the basic respect to be visible without being shamed as I was becoming a person with my own experiences, life would have been very different. I wouldn’t have missed as many opportunities as I have to do the work I understand my purpose is. I’m here to create and offer those creations to people who feel less than due to their difference from the majority. I make a lot of things. Some of them fantastic, others a bit blah, but it’s the making that matters. The more you make, the more you make, the better you get at it, the more people you can connect with and give a bit of a hand to.
So instead of a melty D, I had a rage fuelled conversation with my counsellor and frankly it only gave me more power. I look forward to sharing the program with you in the coming months.
Alongside that old chestnut (being a boombie on the internet telly), I was worried about fucking it up. That’s my eternal worry. I’m coming at everything from a place of sort of understanding some of what’s going on at the same pace as other people seem to, but usually just masking and acting like I’m completely on track. I’m starting to fess up when I don’t know what things mean, or that there are too many things happening at once - can we please do one at a time? Guess what - nobody died, nobody got mad and I think it was probably a positive experience for everyone. Everyone benefits from inclusive practice.
It turns out there’s value in the slow pace, the deep and massively over-prepared situation. I had enough material in my folder to do 58 episodes, just in case. I’m a slow processor. And I was part of a team and together we made a really great thing. My deep thanks to Lucy Griffin who helped me do the things I couldn’t, who produced the F out of this thing. To all my guests. I can’t wait to show everyone who we are and why their lives will be better for it. To Humdinger and Powerd Media for making a space for something that wasn’t there before.
We were a Covid Safe Set, with the minimum number of people, RAT testing prior to entry for every person who came into the space, and masks on unless eating or on camera. I had mine off a bit to not have lines on my face, but everyone else had theirs on. Imagine being treated with so much respect that this is built into your work day, that people have heard your access requirements about avoiding another post viral illness, and put protocols in place that protect everyone?
I channeled my fear of fucking it up and turned it into honesty and humility. Language evolves, understanding changes, inclusive communities benefit everyone while modelling justice and radical visibility. This is a starting point. If you watch it and it isn’t good enough, please add your voice to the landscape. Fill the missing spaces - I welcome you to share it. Let’s get to work.
In the meantime, please do check out the other great content Powerd Media are adding. It’s so great. A welcome change from the Ray Martin style of media where concerned faces look down the barrel of the camera about the terrible hardship of disabled and neurodivergent lives, then speak for us and say a whole lot of nothing useful. I still remember being seven years old and scoffing at A Current Affair, seeing how the syrupy sweet coverage wasn’t about the disabled people they were filming, it was about making them look good. Ticking a box and saying that they were progressive. Any kid could see straight through it but as we get older and face influences that tell us to conform, we take on that messaging. My family were horrified that I criticised the news in this way. Fuck the news. That’s OVER. I’m over it, aren’t you? Now there’s an alternative, and we can speak for ourselves.
All my lovin, JP