My fondest memory of Melbourne’s CBD growing up was journeying in by train on a Friday evening to go and see a show. Meeting my dad after his long day at work, it was an excitement-fuelled flurry of penne bolognese and watermelon granita gobbled down at Pellegrini’s before legging it to the theatre’s 7.30 start. On the walk to the theatre, my father’s long stride cut through the cosmopolitan wheatgrass leaving a quiet corridor for me to trail behind. The structured distraction, parent chaperone and freedom to fall asleep in the car ride home cushioned the sensory tsunami I experienced.

I imagined my twenties to involve more of a life lived closer in, but as I’ve grown older I’ve resigned to the fact that suburbia might the right pace for me. Being Autistic, I experience the world in heightened levels of detail — so I find the city’s visual noise, high volume, endless detail and constant movement significantly challenging. Prior to venturing in, I practice selective amnesia in order to forget every which way it’ll test me. But as the day draws near, my brain runs through Melbourne’s back catalogue of violent events that have occurred in my lifetime. An odd rumination for one of the world’s safest cities, yet perhaps understandable for a nervous system trying to justify why it finds it so hostile to begin with.

On the train in I match travellers’ fragrances to family members and friends, a memory game to distract from the headache growing behind my eyes. Noise-cancelling headphones dull the city’s volume and ease the tension in my jaw, but they create a strange flatness for someone otherwise wired for hypervigilance. I don’t eventually acclimatise to the cacophony of stimuli — I’m unable to completely tune out the vibrating construction, trams that ding and buskers who sing. The tapestry of sensory input only thickens, translating as bodily anxiety and physical stress. The environment might as well come out and say it: you don’t belong.

Every venture into the city is part resourcing/part exposure therapy, with the aim of cultivating more ways to make navigating the space easier. On one such trip, I started my day at the NGV, thinking it would be quiet and familiar, only to become overwhelmed by bustling school groups. I mustered the executive functioning to find a quiet corner, lose a layer of clothing and take some deep breaths before setting off to expand my map of structural touchstones I can retreat to when my cognitive functioning is reduced due to stress.

Over the few years since my diagnosis, I’ve become acquainted with upstairs cafes, carpark restaurants, back street sustenance spots and quiet libraries — all with the aim of fostering a sense of safety and belonging that will make future journeys marginally easier. While these scouted spaces are more “sensorily friendly” than the environment outside, that’s not a hard bar to clear. They might still have harsh overhead lighting, a busy visual language and layers of background noise. My body’s baseline after navigating to these spaces is unable to reap the benefit they might provide anyway.

Who were these spaces built for? I ask often myself. Because this famously liveable city seems to favour those able to remain regulated within it.

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During a 2020 lockdown-compliant walk along a beach path approximately 1.5 meters wide, my friend and I moved to the side as an older couple approached. The gentleman — unsatisfied with our social distancing — climbed the steep planted foreshore on his side of the path to indicate he didn’t approve of our efforts. His huff and puff is a strange memory in the context of the past five years, when mask-wearing is a rare sight even at times of high infection rates. It speaks to how so many measures adopted during the pandemic (such as mask mandates, support payments, infrastructure adaptations and behavioural changes) demonstrated society’s capability of moving towards disability justice in the presence of a calamity. But the subsequent string of policy repeals made in attempt to return to “normal” has undone many of those progressive steps.

Universal design is a concept of encouraging participation in public life through spaces that are accessible to the largest possible group of people. This includes the challenges faced by those with physical, auditory, intellectual and visual disabilities, autism and neuro-cognitive disorders (like Dementia and Alzheimers), different body sizes and much more. The design must consider those with varying community access (those living in suburbs, rural areas and preferring to age in place), provide a baseline feeling of safety, multi-sensory means of navigation and incorporate forms of care for the natural environment. Co-designing these spaces with the disabled community is paramount to ensure they are responsive to local lived experience.

It paints an odd picture when, walking through the CBD, I see more famous faces than people using mobility aids (which 7.7% of those under 65 and 25% of those over 65 use in Australia). When our public spaces don’t look like an accurate cross section of the people who live in the city, it sends a cold message about the value of invisible groups. Impairment is part of the human condition — inescapable, for those who live long enough.  Therefore, it is in all of our interests to create spaces that are equipped to facilitate community participation regardless of ability. Disabled-friendly spaces also hold others benefits. While infrastructure can’t change social attitudes or structural problems overnight (like cat-calling and homelessness), wide, well-lit thoroughfares can help gender-minorities feel safer when exercising outdoors or walking at night.

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The most crowded place I regularly visit in my suburb is the main supermarket. While my sensory profile puts me in the target market for their weekday quiet hours, they fall during my brain’s sharpest hours of the day, which I must prioritise for paid work. As someone whose life-long special interest is food and cooking, supermarkets are a relatively controlled space to be in the community. But the environment still drains my senses, taking up more spoons to visit than ideal. Following early positive feedback on the quiet hour initiative from mums with little kids, the vision-impaired and the elderly, Coles and Woolworths have since expanded the program from one to at least five hours per week. Which begs the question: why do accommodations including lowered lighting, less background noise, fewer store disruptions and increased social understanding have to be limited at all?

Because ultimately, I want to go further than my local supermarket, and to do so at less personal cost. Taylor Swift Era’s Tour concert at the MCG is an example of a relative neurodivergent success story, with recognition for sunflower lanyards, the availability of sensory rooms and a quiet viewing box. While compared to the blatant ableism experienced at Harry Styles’ Marvel Stadium concert the year before it’s a positive step forward, it’s still frustrating that the baseline has taken so long to move this far. Because these concerts aren’t the only spaces Autistic people want to be able to access, nor are these self-congratulatory top-down measures by big corporations trickling down to a community level. We need bottom-up reconfiguration of all public spaces and greater public awareness to address sticky ablest thinking. Only then might Autistic and other disabled people be able to participate in society as fully as their condition allows.

Because the social model of disability considers the barriers within environments that prevent those living with impairments to participate in them equally, as the sites where “disability” emerge. Modern definitions do not ignore the reality of Autism or other conditions but challenge environments to accommodate for them because they are an “expected incident of human diversity”. I have some ideas of what that might look like — what changes I know would benefit me — but I know that just within Autistics those preferences would differ. That’s why investment in multi-disciplinary co-design is so vital. Celebrating and platforming single activists is great for representation but shunts responsibility onto individuals, creating a showy distraction, while real change isn’t achieved.

Through a lot of exposure, expensive therapy and — frankly — hard work, my experience of the CBD is a lot better now than it’s ever been. I can implement accommodations that help me pace myself and soften my experience of the city. My felt sense of safety has vastly improved, but no matter how well resourced I am, how many tools I have in my toolbox, I’ll never have the perfect compensation strategy for this environment. Even on a successful trip which looks smooth on the outside, I have a decompression cry on the journey home and reduced capacity in the days that follow.

Despite this, I’m still determined to experience things that attract crowds. Some of life’s richness after all — be it through food, culture or escapism — is found on busy streets. Disabled people in these spaces should be met with the structures and social attitudes that communicate that their presence is valued. For now, the cost of participation falls to me.

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On a recent morning walk in Hampton, my friend and I wandered through the famous Thomas Street playground, which we remembered for raucous birthday parties and end of school year break ups. The playground has since been sensitively updated to include infrastructure for different ages (babies through elderly), abilities, sensory profiles, interests and those supervising. It was a joyful utopian sight of a public space built with the whole community in mind. With the whole park to ourselves in the early morning quiet, we explored the inclusive forms of play — from flying foxes to low ropes and things that spun, bounced and informed.

As the sun came up, the park filled with children giving us furrowed-brow hints to move on. My nervous system more regulated, I felt joyful about how this space had been transformed, yet also saddened by knowledge that the “real” world won’t as easily amend its design.

Image: Jose Manuel Esp