Inaccessibility is the thief of joy.
I’ve been thinking a lot about joy lately, specifically how the emotion is universal, but the experience of it is not. As an autistic person, I often feel as though joy is something I can reach for but cannot grasp. I can — and do — feel joy. But I’ve lost count of the number of times I’ve had to skip out on joyful experiences, simply because they were not accessible to me. Sometimes, joy is too far away, like a remote island on the other side of the ocean, and I have no way to get there.
Really though, here in Pittsburgh, the joy that eludes me is usually just across the river. I have a close friend, for instance, who I haven’t seen in five-and-a-half months, even though she lives only five miles away from me. This isn’t due to a lack of desire, but because neither of us has the means to travel the five miles that separate us. Five miles. A distance a car could travel in under 20 minutes. The car in this scenario, though, is hypothetical. Neither of us drives, though for different reasons.
My reason offers a glimpse into the barriers to joy that punctuate my life, which go well beyond transportation. Misheld beliefs, when reinforced and perpetuated by others, can make these barriers loom large, but when I’m met with patience and empathy they feel less daunting, even if they don’t completely disappear.
Driving with the brakes
I did try driving, briefly. Shortly after turning 16, I did what was socially expected of me: I got my learner’s permit, took driver’s education classes and spent time behind the wheel actually driving. Like a lot of soon-to-be drivers, empty parking lots on weekend afternoons became my preferred way to get in practice hours. But unlike most of my peers, driving never appealed to me. I did it because I knew it was expected of me; it was a goal I was pursuing because it mattered to other people. What people didn’t seem to know, though, was the deep-seated uneasiness that accompanied me every time I got behind the wheel, or even thought about doing so.
Eli Kurs-Lasky at the Squirrel Hill bus stop along Forbes Ave., Sept. 25. (Video by Stephanie Strasburg/Pittsburgh’s Public Source)
I’m pretty sure I surprised even my seasoned driver’s ed teacher. The few times he took me for practice drives, he noted that I had the opposite problem of most new drivers. I wasn’t “flooring the gas.” In fact, I preferred not to use the accelerator at all! I did, however, like the brake a lot. The brake felt much less terrifying and it didn’t send me into a mess of unease.
Of course, I knew that the accelerator is key to getting anywhere. But if it were up to me, I wouldn’t have to use the accelerator at all. I preferred two modes: putting my foot on the brake and taking my foot off of it. I knew I couldn’t exactly explain this to others because my discomfort was invisible to them.
The first time my permit expired, I followed the advice of others, and renewed it, “just in case” I suddenly felt comfortable driving. I didn’t. But the next time it expired, I let it lapse. I decided I was done with driving, done with making myself so uneasy and anxious just for the sake of meeting a milestone.
Bus fluency — until COVID
For a while, this wasn’t a problem. A few years prior, before starting high school, with the support of a small group of people, I learned how to navigate the then-named PAT bus system enough to get myself home from school every day. I was nervous every time, but I made it work. I don’t know if it ever felt easy so much as it felt routine. In high school, and even a bit of college, my “fluency” riding the buses was enough to make my inability to drive a moot point.
For years, I rode the bus multiple times a day. Eventually, though, I started to feel worn out from bus rides and I noticed how depleted my energy was at the end of the day when I rode the bus home from campus. I pushed through, and kept pushing through until March 2020, when the COVID-19 pandemic reached Pittsburgh.
Initially, I stopped riding the bus as a health precaution. I didn’t want to be in close, cramped spaces that increased my risk of getting sick. From March 2020 to November 2025, I did not ride the bus even once. Since then, I’ve been on the bus a total of four times. Each time was an absolute last resort, when I had to get to an appointment and had no other way of doing so. Somehow I had not only lost all sense of fluency navigating the bus ride, but the exhaustion I felt came back tenfold, and now with physical pain. I still don’t know how to describe how or why this happened. Another invisible barrier.
Eli Kurs-Lasky at the bus stop with his fidget spinner, Sept. 25. (Video by Stephanie Strasburg/Pittsburgh’s Public Source)
Am I physically capable of riding the bus on my own — boarding, remaining seated, pulling the yellow cord at my desired stop, and then de-boarding? Mostly. The sensory and energy costs, however, are so great that it’s often not a trade-off I’m willing or able to make. These days, sitting on the bus triggers intense migraines and vertigo. I try to distract myself with music, a fidget toy, texting a friend. No matter what I try, though, a headache begins blooming, festering and growing until I can’t ignore it. I get the sensation that everything around me is spinning or maybe I’m the one who is spinning? The seasick feeling dissipates shortly after I get off the bus, but the migraine and vertigo last the rest of the day and often into the next. I generally lose three days to recovery.
People do not seem to understand invisible barriers. Because I look and seem able, people see me avoiding the bus as an act of … luxury? Stubbornness? I don’t quite know.
Why shouldn’t I get to go to a Pens game?
I’ve come to see two prevailing beliefs — misunderstandings, really — that shape how people interpret my disabilities. One is that sensory-sensitive individuals only experience joy in places specifically designed for autistic people (or designated as autism-friendly). The other is sensory aids are optional rather than necessary.
This was hammered home during the NFL Draft our city proudly hosted in April. I’d been generally ambivalent about the draft, though I didn’t relish the thought of large crowds flooding into “my” city. During the last day of the draft, I opened Instagram to see an article detailing some of the efforts to make the experience accessible to those with sensory sensitivities — such as having “Sensory Activation Vehicles” that provide calm and quiet(er) settings and the option to borrow sensory aids (headphones, fidget toys, etc.). Overlaying the text was unsolicited advice from the Instagram user sharing the article: “Don’t attend one of the busiest, loudest and overstimulating events in all of sports.”
Reading this prompted a prickly reaction inside me.
Read more essays from Pittsburgh’s autism community:
It took a decade to get through college. Now I’m a professor. Could an autism diagnosis have saved years of confusion?
An autism diagnosis says nothing about a person’s likes or dislikes, or where they find enjoyment and comfort. Some of my experiences of joy “make sense” as a largely sensory-avoidant person, such as browsing books at the library, reading and writing — all quiet, self-sustained activities. But there are activities and places that I enjoy that seem counterintuitive, such as joining a group of 20 other photographers as we walk en masse to explore different Pittsburgh neighborhoods or going to PPG Paints Arena to cheer on the Penguins with 18,870 other people in attendance.
The “cost” of a trip to my local library is a lot less than, say, a hockey game. Even seemingly simple outings — meeting a friend at a cafe — prompt sensory bombardment and then exhaustion. But disabled people should have equal access to all spaces, even those that will overwhelm and exhaust us. Why should we be excluded from the spaces our neurotypical and nondisabled peers can access with ease? Am I supposed to abandon certain sources of joy simply because the environment was not made for me, because it “doesn’t make sense” that I enjoy it?
What people don’t realize is that making a mockery of necessary accommodations such as quiet spaces and sensory aids pushes people like me out of these spaces. It feels like an effort to confine us to certain portions of society, preferably doctors’ offices and other medical contexts where our disabilities don’t have to interfere with others’ enjoyment and where our accommodations “make sense.”
When the obvious answer doesn’t work
Like most humans, I yearn to be understood and to be met with compassion even when it is difficult. I’m aware that my disabilities can require extra thought, creativity and problem-solving, and I wish others would more routinely offer to help “carry the load.” I am weighed down by the shame of my difficulties and differences, and embarrass quickly at how often I depend on help from others. It seems the more invisible the barrier is, the less likely people are to believe in the accommodation.
I’m aware it seems as though there is often an obvious answer that will solve all of my problems, like: “Just take the bus.” I’ve tried. What happens when the obvious answer is also an answer that doesn’t work? Sheer force of will does not suddenly make the inaccessible accessible. So sometimes, I walk. Sometimes I depend on luck and the generosity of friends — that they want to go to the same place, and are willing to drive me. Other times, the answer is: I don’t go.
My ability to see friends, go to Penguins games, join photowalks, are all frequently stymied by the inability to get there. I long for the day when joy doesn’t feel so complicated, when I can engage in activities and pursue opportunities simply because I’m interested in them. I hope that, when I say no to making plans, it’s because I’m not interested in going, not because I’m autistic and joy is just too far away.
Eli Kurs-Lasky is a writer, self-taught photographer, devout Penguins fan and Pittsburgh native. He is on a quest to experience more accessible forms of joy. He can be reached at eli.kurslasky@gmail.com.
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