Expanding My World: Reviewing Fringe for mindshare

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By KJ Hepworth

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When I signed up to review shows for mindshare, I didn’t know I had a disability. I knew I was autistic, had significant mental health issues, and autistic burnout.* I did not consider these to be disabling things. They made it hard to get through my days, and made it a herculean effort to get through the two days of work I had to do each week. But I was not in hospital, or headed in the direction of hospital, and that was a massive win to me.

I applied to review Fringe shows because it sounded like fun, and if I’m honest, because I was lonely. I’ve recently returned from living most of my adult life away from Adelaide, after growing up here. A lot of that time was overseas, and I had lost touch with most of my childhood friends. Families are complicated, mine is no exception, and for the time being I was not in contact with many family members.

In my small world, consisting mostly of a short-term rental and doctors’ offices, energy was precious and I hoarded it accordingly. I couldn’t muster the necessary resources to operate the polite, neurotypically-appropriate mask I have cultivated for smooth family and social interactions. Reviewing seemed like a way to be around people, and perhaps have some loneliness-allaying social interactions with people who did not expect or demand Mask Me.

‘Masking,’ as it’s known in neurodivergent communities, is roughly equivalent to ‘passing’ in LGBTQIA+ communities, and ‘code switching’ in African American culture. It’s the process of studying every social interaction down to the tiniest details, creating thousands of elaborate branching algorithms in my mind — such as ‘if X person makes Y expression, it means Z is likely to be a suitable body posture in response’ — and then in every interaction involving other people, quickly identifying which combinations of algorithms are likely to be appropriate, and masterfully acting them out in a seamless flow. To appear ‘normal enough’ to successfully perform basic tasks that involve interacting with other people (buying things, doctors’ appointments etc) and to have meaningful and satisfying connections with people (family and friends).

I don’t have social reasoning like neurotypical people do, so this is what I do instead, to survive and be around people. Having been socialized as female since birth, I’ve learned that pleasing others has been absolutely crucial for my survival. Every measure of interpersonal and professional success I attained before my diagnosis (at 43) demanded masking in all my waking hours. Anecdotally and statistically, for most cisgender people socialized as male since birth, masking is less constant, and more of a choice.

If masking sounds exhausting and unsustainable to you, that’s because it is. Suicide rates are higher among ‘high functioning’** autistic women than for autistic men, and nine times higher than for non-autistic people. The higher our education level, the more socially effortless we appear, and the older we get, the more likely we are to -be suicidal. This high cost of conventionally measured success has been attributed largely to the weight and unsustainability of the mask.

So my life had become small for a very important reason. I had only one algorithm to worry about: ‘does X lead me closer to hospital, or further away from it?’ My two-week stay in a mental health ward is still a fresh memory in my mind and I have been very motivated to avoid a repeat of it ever since.

I was lonely, masking didn’t seem worth the high cost, and I didn’t know how to be around other people without masking. My early forays into unmasking myself with loved ones were disastrous. I felt kind of stuck. I hoped reviewing for mindshare would be a way to interact with people who might ‘get it,’ having their own lived experiences of mental health ups and downs. I imagined lazy afternoons spent in wicker chairs on a balcony with fellow out-of-sync comrades, discussing the merits of this or that show, and using consensus decision-making to rank them.

Reviewing for mindshare was not what I expected at all, but it did what I hoped for my life, and more. Disappointingly, there were no wicker chairs, or balcony-situated discussions. I quickly got over my disappointment as the realities of reviewing set in. I met other lovely reviewers. I got used to working with the talented and welcoming Anna Jeavons, mindshare Editor. And I had (fun) work to do.

I had to navigate multiple online systems, creating passwords, and booking tickets. I had to turn up to multiple unfamiliar locations, on the right day and at the right time. I had to write reviews and send them to Anna within 24 hours, get her approval, then post to the Fringe review site within 48 hours. These were very big deals in my little world. I couldn’t remember the last time I had a 48 hour deadline. I had been incapable of operating a website sign up page for six months, let alone clunk along through awful user experience design to achieve an actual task using an online system.***

Organising myself to do what would ordinarily be common tasks in the midst of a challenging mental health crisis was ambitious. I was scared, and I did it anyway. Before the first review, I had a-serial-killer-is-breaking-down-your-door level of anxiety for a couple of days. I had a panic attack immediately before the show started, and then again before submitting my work. It was deeply uncomfortable, to say the least. But I did it. The satisfaction I got from completing this small task, exhausted from the effort and nervous system high alert of such fear, was surprising, and completely worth it. People reached out to me about the review, the impact it had on them, and I learned that sometimes people need to hear my take on things more than I could ever have imagined.

A few days later, I did another review. The next week, a couple more. With each review completed, I got less anxious about the process, and by the last review I was genuinely looking forward to it. By doing the reviews, I was interacting with people regularly, using minimal masking. I discovered that I couldn’t suddenly unlearn the masking habit of a lifetime, but I was regularly showing more Real Me than I had dared to since adulthood. Reviewing also became a way to remind myself of some skills that had grown very rusty. I remembered I can write, and have something to say. And I was surprised to discover that there are people who need to hear it.

I saw shows I never would have without reviewing obligations. I almost certainly would have chalked up the whole Fringe as too high a risk of hospital due to the crowds and confusion and exertion. Instead, I saw brilliant shows, and sometimes met the interesting people who made them. I had passing conversations with other attendees in which I didn’t feel obliged to mask. I got to enjoy the stories told onstage of the performers’ own mental health and identity intersections. As someone grappling with multiple recent diagnoses, this last part had a profoundly positive impact on me.

By pushing me close to the limits of what I could handle repeatedly, but not too far, reviewing for mindshare expanded my world incrementally, in a way that reminded me of some research about graduated exposure. In one of my many medical visits, someone explained Lorimer Moseley’s cutting edge research on pain. As a neuroscientist, he’s discovered that nociceptors — the brain’s pain receptors — sometimes become increasingly sensitive, triggering a pain response far earlier than there is even a hint of a chance of tissue damage occurring. This is where a lot of chronic pain comes from, and Mosley is one of UniSA’s biggest deal researchers due to this breakthrough understanding.

Overcoming chronic pain, he says, is about pushing just the right amount, enough to suffer but not to traumatize. It’s a delicate balance to get right, but when it’s hit repeatedly and incrementally over time, it’s possible to remind the body that it doesn’t need to use its pain alert system in that way anymore. As someone getting treatment for chronic pain based on this research, I can tell you it works. What I didn’t expect when I applied to do mindshare Fringe reviews, is that they would work the same way, but for my loneliness.

I’ve been astonished at how far and how fast my perspective has widened in the last few weeks. I still have a lot of practical and executive function trouble in my life. As well as Fringe reviews, March was also a time of serious reckoning with my internalized ableism. Now, in mid-April, I consider myself disabled.

With my ever so slightly expanded world and this new self-acceptance, I feel far less lonely. Writing the reviews, being read by people I respect, and having the conversations the reviews sparked with people who’ve been through similar times has clarified things for me. I was reminded that I’m in community and I’m proud of who I am. Autistic, disabled, queer, and fabulous. Continually unmasking, ever working toward showing the world more of the Real Me.

* like chronic fatigue, but caused by pressures of conforming to neurotypical societal expectations.

** ‘high functioning’ is a term that is offensive and irrelevant to a lot of autistic people, including me. However, research on autistic people regularly uses the term as a category, so it’s used here when referring to research results.

*** Thanks to my mental health struggles, my executive functioning is currently in the toilet, and this inability is one of the side effects.

7 Comments

  1. Emma on 16/04/2021 at 9:24 am

    Bloody beautiful, KJ. Insightful and really useful to understand.

    • KJ on 19/04/2021 at 4:00 pm

      Thanks @Emma! <3

  2. Alli on 16/04/2021 at 10:14 am

    You were always clearly divergent Katherine. Like me, there was no need to hide. I mean, with the exception of social rejection, financial limitation and being abused and/or murdered. Being different is what made you so likeable. Typical is another word for dull.

    • KJ on 19/04/2021 at 4:02 pm

      Absolutely. In the words of another fabulous neuroqueer, “we find each other.” We sure do. So happy to have your friendship lifting me up on this twisty ride. <3

  3. Alicia Sullivan on 19/04/2021 at 3:14 pm

    What a wonderful read. I have read some of your reviews and they were very insightful.

    I wish we, reviewers, did get to sit in wicker chairs on lazy afternoons, would have been amazing.

    Thank you for sharing your experience xx

    • KJ on 19/04/2021 at 4:03 pm

      Thank you for the kind words. I wish we did, too! There’s always next year!! Walls… are you listening? Will wicker chairs and a balcony magically appear in the mindshare editorial office?

  4. Suzanne Edwards on 20/04/2021 at 10:16 pm

    Hi KJ, your writing style is amazing, in this and other reviews. Thank you for providing insight into your experience with living with autism. You have done an amazing job over the years of coping in a mostly neuro-normal society.

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