WHAT ACCESS LOOKS LIKE

Header image description: A subway car with its doors open frames two people sitting inside wearing winter coats and accessories. Outside the car, a flurry of snow is coming down. On the outside wall of the train is a small, bright blue accessibility symbol to the lower right of the open doors.


As I write this, Minnesota continues to deliver its hallmark snowy winter–seemingly having forgotten it’s now March–with several inches still expected after a full day of constant snowing. My street near the capitol building is only plowed during official snow emergencies, and since we’re tough motherfuckers up here, it likely won’t be cleared before tomorrow. While my body can’t regulate its temperature, I still like to think of myself as a Midwesterner who can handle a little powder. But even as I shrug off the flurries, I know this latest batch of snow means more days cooped up in my house, unable to navigate the snowy world outside when I need a cane or wheelchair to move freely. My pride betrays my need for access.

When we talk about accessibility, disabled people are often stuck in a bind–we need allies to ask questions, listen, and respond accordingly, but we also fight off exhaustion from the expectation of being constant teachers. This can lead to situatiokons where abled-bodied allies, trying to alleviate that exhaustion, make decisions concerning access and accommodations without consulting disabled people. While well intended, this creates a new hurdle: when disabled folks then point out the solutions devised may actually generate more or new problems, they are often met with dismissal, defensiveness, and frustration. Now we must be conscientious of the feelings of abled people in order to create access. If we don’t, that access can be subpar or disappear entirely as we are painted as ungrateful, difficult, or impossible to please.

We need abled allies to suspend their anxiety of making mistakes. We need them to acknowledge that they don’t know everything about accessibility, even if they have some knowledge of the subject– just like disabled people don’t know everything about each other’s specific needs. I as a mobility-impaired person don’t intrinsically know all about the access needs of someone who’s D/deaf or Hard of Hearing just because I’ve had to advocate for my own accessibility and accommodations. We all–abled and disabled–are capable of wrongly extrapolating that access in one case looks like access for all. It doesn’t. We have to take the time to learn, make mistakes, try again and fail better. And in this process we must do our best to set aside our egos so time may be spent on the solution at hand, rather than comforting our bruises when we inevitably bump up against the limits of our own knowledge.

There’s no neat answer to what access looks like. But I think we’re stuck in this phase of Disabled Person As Constant Teacher because of a central failure in framing. We are often only consulted after an event, structure, rally, etc is well underway in its planning process. What we must do is be present from the very beginning– whether in direct leadership, as consultants, or represented by dedicated allies who will advocate and communicate with and for us. This starts to move the frame off of us being the only ones responsible for decent accessibility and acknowledges instead the group effort needed to create spaces and content that can foster disabled people’s social wellbeing.

But having a place at the table doesn’t mean there is food to eat. Resources are scarce in late stage capitalism whether you’re an activist, artist, or small business owner. (Unless you’re a billionaire hoarding said resources, in which case–hi, can you plow my city’s sidewalks so I can safely leave my home? I’ll pay you in excellent exposure!) What we do have, though, has to be used responsibly towards our ends–including our moral ends. It’s not enough to create a figurative space for disabled people to show up; so many of us can’t access that space anyway because we don’t have the resources to get there. A disabled sensitivity reader isn’t going to do much if most disabled people don’t have the financial or social resources to access higher education–let alone breach the exclusive publishing industry. Our moral ends, if they claim to be allied with the needs of all disabled people, must then be to incorporate those needs into our resource allocations. Whether it’s the resources needed to create access or those needed to sustain disabled lives, we must make sharing our collective resources part of the bedrock of our values.

If we can afford, for example, the medication we need to survive because our community uses its resources with us in mind, we can afford to spend time combating ableism and teaching others if we wish. It’s no longer a burden, because we are not fighting constantly to survive. We can begin to build our communities from the ground up with disabled people’s input and devoted resources to access and disabled needs.

So if differences of impairment were considered at the root of any social project, how would access manifest? What would this kind of access look like?

I think it would look the same as the access afforded to abled people everyday–invisible. Drawn into the very blueprints of the architecture and landscape, routed through the parade or protest march path, programmed into the game’s core mechanics, it wouldn’t be noticed. The design would work seamlessly for anyone interacting with it. No side entrances or expensive add-ons. Nothing tacked on or clumsily constructed as an afterthought. Maybe even one day in this ideal world I’ve imagined, we won’t even need special consultants or initiatives for creating access. Maybe the ability to learn how different bodies navigate the physical and social world will become second nature, and people will need little help in creating accessible spaces and content.

In this imagined world, my city and state would invest some of their billion-dollar budget surplus into plowing our streets and sidewalks during this snowy season. Every curb cut and bus stop would be cleared, regardless of how much snow has fallen. They would know the importance of this because disabled leaders starting at the local level would remind others that in order to be a member of one’s community, you first must be able to access it.

RITUAL

Content Warning: Discussion of addiction, including the specifics of using drugs, and smoking.


I struggle to pull my coat onto my shoulders. The gesture makes a popping sound from my elbow, which I follow with a preprogrammed joke before anyone can ask if it hurt. It did. It always does. That’s why they call it chronic pain.

It takes some time to put on my shoes. My left ankle doesn’t rotate anymore, and neither foot will point their respective toes. Turns out that’s a useful thing for a foot to do in order to put on boots. I try as much as possible to make sure no one’s paying attention as I push my sluggish feet into them, because it’s not fun or funny. It hurts, and it’s humiliating to feel unable to put on your own shoes. I don’t have a joke for these moments. Just angry tears I shove down past the laces and tongue.

I pull on my hat, throw a scarf around my neck in such a way I know it will sluff off my shoulders as I shuffle out the door. Fixing the long length of fabric isn’t worth the motion; I can tell if my elbow pops out again it’s going to mean keeping my arm bent in a pretend sling and pressed against my side for a good 40 minutes to keep it from getting worse. It’s not worth the ache. I let the tassels drag across the doormat, getting damp and heavy.

I already have my cigarette behind my ear and a lighter in hand. The second my curled fingers hit the cold air they begin to grow stiff. I waste precious mobility digging through my pockets for the box and light. So I’m always ready in advance. I’ve perfected the actions, as much as I can, so as to save as much energy and avoid the worst of the pain. The only thing to pity is the temperature, and that I’m depressingly low on my cigarette count.

Out in the cold, I turn my back to the direction of the wind and flick the lighter. I take a deep, steadying breath. Sometimes the things that are bad for you are better than going without. But that’s logic that’s gotten me into trouble in the past.

I think about ritual. Some people say there are ghosts built solely from repetition–imprints of the daily motions of a lifetime onto a space. Women in colonial gowns walking through the hall. The sound of heavy work boots endlessly climbing the stairs before thudding back down them again. Congregations walking the aisle to take their waiffers, kneel, cross themselves, and disappear until the next communion. The rituals continue long after the person who made them.

Image Description: A close-up of someone wearing a pair of tan work boots and dark pants, standing in the snow.

I’ve let go of a lot of rituals over the years. I’m an addict, so there’s a lot of them. I’m trying to cut back on smoking, and my crippled body would be pleased by the follow through if I manage. Suiting up for the Minnesotan winter is no small effort, and, turns out, cigarettes are pretty bad for you. But there are worse drugs, worse rituals. The kind I hope died with the person I was while using.

A lot of folks at AA or NA meetings will tell you that you’re already high when you’re getting ready to use. The anticipation makes your skin warm, pushes down through you until you’re flush and giddy. As you call your dealer, push open the door of the liquor store, open that brand new prescription bottle– you’re taking part in a ritual. One that you will perfect over time. It soon becomes as heady as the drug itself.

I used to smoke after my first fix in a while. I’d feel the tension in my shoulders unspool, and the constant pain in my knees and hips would sink down with it. The nicotine and opiates would hum through me until I was euphoric about nothing and everything. It was wonderful to be alive, for life to not mean– at least for that moment– I must be in pain. But those moments grew shorter and shorter, and to reach them took more and more, until I was trading my breath for empty promises.

I disagree with those who say the ritual is as bad as the communion. I think about the ghosts that haunt houses without knowing. There’s no sentience behind the phenomena, only the sounds and signs of life playing out, day after day. No one planned for those footsteps or practice scales to be the only evidence of their having existed. I didn’t plan for the familiar ache of putting on my coat to carry the weight of a painful memory–the memory of not being in pain–but the motions are remembered, imprinted onto my cracking joints and fumbling fingers.

LIKE THAT

Content Warning: Ableism, mention of sexual harassment, transphobia including misgendering.


“I hate customers like that.”

My coworker is referring to the woman in the colorful coat now walking out the door, happily chatting about her new video games to her companion. I think he’s trying to bond with me over the shared miseries of retail. Instead I offer only a shrug and return to filing discs into the cabinets behind the register. We both know what he means. It’s left unsaid because my hips hurt and, sometimes, I’m a coward.

I’d been the one to help the woman–she introduced herself to me immediately, let’s call her Wanda–find the NintendoDS games she wanted, as well as retrieve the system she had put on hold over the phone shortly before arriving.

It was clear Wanda had planned her outing. She approached the counter clutching her bag tightly and announced she was here to pick up her DS. She stuttered, but at the encouragement of her companion–a man in his early to mid 30s, likely only a few years her elder–Wanda found the words. She already had a bank envelope in hand as I looked up from pulling the device from the hold drawer and was counting out the crisp twenty dollar bills with determination.

“We’ve got a sale on used games,” I said, having heard the man mention she could get one game if she had enough left over. “You said you have $150? I can help you find a few that won’t put you over budget.”

Image Description: A white Nintendo 3DS sits on a plain white background. Photo by Dids on Pexels.com

Wanda had looked up at me, frustrated at first for interrupting her second count through, but quickly shoved the bills back into the envelope and into her bag, already turning to the glass cabinet filled with cartridges and asking questions about what Nintendogs games we had.

She’d ask me one question, and before I could fully answer it, she asked me another. She told me about which Lego games she already had, and the Nintendogs game she coveted most. Her voice carried in the relatively small shop. I could all but feel the few other shoppers eyeing her. When she made her decision, I turned to grab the key from behind the register for the DS cabinet. I hadn’t explained, and I’m slow to move toward the end of a shift, and so Wanda repeated her selections again, this time louder, to my back.

This was likely when my co-worker noticed Wanda. He looked up from the stack of Xbox 360 games in his hands to meet my gaze and raise his eyebrows. I gave him a flat line smile to avoid glaring at him before quickly turning back to Wanda.

“I just gotta grab the key for ‘em, okay? Gimme just a sec.”

As I bent to get the key, I heard Wanda’s companion– her brother, I now gathered– chastise her gently for rushing me. He saw my heavy limp and the way I labored to open the lowest drawer for the key lanyard. I waved away the words, assuring it was no problem. I hadn’t explained. Wanda was excited. I understood in a way the brother probably didn’t recognize; it’s not as easy to spot as my uneven gait.

He ended up wandering over to the PS4 games while I started finishing things up with Wanda at the register. One on one, she apologized as her brother directed–the first dimming of excitement I’d heard in her voice throughout our interaction. “I’m autistic,” she said. “Sometimes I get distracted.”

“Hey, that’s okay,” I said, and this time it was my turn to talk a little too quickly, a little too loud. “I’m autistic too!”

Wanda looked up. “Yeah?”

“Heck yeah.”

I offered her my knuckles for a fist bump. I can’t curl them into a full fist anymore, but Wanda bumped them all the same.

Her brother returned to the counter, and we finished the transaction. He thanked me, sincerely, in a way I’ve learned means thanks for treating her like a person. I get it a lot from the neurotypical loved ones in the orbit of autistic folks. I told him, sincerely, it was no problem. Wanda didn’t scream obscenities at me in front of her mortified child. She didn’t try to flirt with me by proving she was better at gaming than me. She didn’t refuse to talk to me while I checked her out, instead addressing all of her questions to the cis male coworker with another customer at the next register. She didn’t call my store to sexually harass me. She didn’t eye me over like a specimen in a Petri dish, brazenly staring at my crotch to finally “figure me out” when the rest of my body would not betray the answer. She isn’t a bad customer. I have plenty of them. And while I can’t say with certainty every one of those customers were neurotypical– I’ll just say, we learn to spot our own.

I don’t know what my coworker was doing while I told Wanda I’m autistic too. But by the time Wanda and her brother round the door, it’s clear he hadn’t heard me. He doesn’t know– I’m like that. I can’t look people in the eye without my stomach feeling twisted. When I do, I stare too hard. I intimidate. My face doesn’t know how to make the right shapes. People assume I’m mad when my furrowed brow is one of confusion, because it takes longer to process all the customs and protocols of social interaction. I come off as untactful, awkward, enthusiastic bordering on obnoxious.

Wanda says she’s autistic like it’s an apology. I say it like no one will believe me. The spectre of what others define us to be seeks to prevent us from forming connections.

But somehow no one seems to look at me the way those customers eyed Wanda. I’m intense. She’s special. God, how I hate that word in the mouths of neurotypicals.

There’s a reason I’m good at customer service; it’s not being a good actor, although I’d like to think myself one. It’s something more insidious. Somewhere along the way, growing up, I realized I was different. I didn’t understand why, but I saw and learned–swiftly, sometimes brutally– that people did not like it when you got certain things wrong. So I watched with my too intense stare, and soaked in all the information. I liked to learn, after all, and the consequences for not learning scared me. I became good at hiding huge parts of me. The stuff I couldn’t were explained away by those around me.

It took me 20 some years to find what I had hid. And here I am today– telling Wanda I’m autistic too, but not having the courage to tell my co-worker the same thing. What function can my privilege of passing as neurotypical serve if I don’t respond to those comments? Can it do anything if, when I do speak up and tell allistic people I am on the spectrum, they smile and nod but clearly don’t think I fit the stereotypical definition of autism society has taught them?

Wanda and I share the same alienation as different sides of the same coin. Wanda says she’s autistic like it’s an apology. I say it like no one will believe me. The spectre of what others define us to be seeks to prevent us from forming connections.

“So what games are you playing these days?”

I jump a little, dropping one of the games I’m alphabetizing on the counter. My co-worker paces behind the register beside me, bored. I don’t look up from the drawers.

“Um, Diablo mostly. I love over-the-top fantasy games.”

He doesn’t respond, having in a few long strides moved out from behind the counter to put some cases back on the shelves. I glance up just in time to see a customer with an armful of trade-ins who is looking toward him for help. “Hey there sir, how’s it going? She can help you right over there.” He points to me and turns back to the wall of Xbox games.

Image Description: A close-up of a Mario-themed white lanyard with a variety of pins on it, including a recycle symbol and a unicorn rearing up framed by a rainbow circle. At the center of focus is a blue circular pin that says “HE”.

My cheeks burn as the customer dumps his games onto the counter in front of me with a clatter. I go through the motions, set on autopilot, hardly listening to the customer as I check his ID and look up prices. I’m probably staring too much and have to remind myself to blink. My eyes must look blank, intense.

I can’t stop seeing Wanda’s colorful coat amid the sea of black hoodies and gray ski jackets.

Right before she left, as I had fumbled to pull her change from the register, Wanda complimented the collection of enamel pins dotting my lanyard, her eyes fixed on the one that read HE. She looked up to take the coins and her bag, and said, “Thank you for all your help, sir. Thank you.”