Excerpt from “McDonaldsing into the Future-Death”

We call it Frink, and Frink it has been since he was able to demand “drink.” Frink it remains, though Frink is specific in a way only his family can know: a carbonated drink from McDonalds as dispensed by an accessible self-serve fountain (a pox on behind-the-counter tyrannical control!). Though cup sizes have escalated over the years, Frink’s always come as an earned reward. Frink as the meaning of life; Frink as the purest joy; Frink as the promise at the end of a long day pining for Frink; Frink if, and only if, one is Good. Frink because he is Good. Consider Frink to be your sex, your drug, your rash internet purchase, but also your wholesome chaste handhold with a first date at a carnival, your sleep stuffy, your comfortable around-the-house lived-in sweater. Frink for a blissful, refill-laden hour. Then the return to normal frinkless life.

At the Toronto Zoo, a spooked middle-aged woman walks alongside a much younger, frowning woman, their age difference thirty years, at least. Woman the Younger seems in a hurry; Older moves in a way I know: slow, subtly uncoordinated, arms slightly flexed. Her clothes (pastel polyester pants, an unflattering white blouse) fit poorly. Her thick, slightly sticky hair is shaped like a hard hat. Ungroomed, not unsightly or unkempt. In contrast, Younger dresses stylishly, in an actual dress – Van Goghian, blue with yellow erupting sunflowers. After a few more seconds of observation, I realize that these two probably unrelated people – they are different races, there is no affection – have been brought together in a care relationship. Older, who’s intellectually disabled in some way, is being led by hand-pull, not hand-hold. Ah. Like my son, she can’t move any faster, it seems. She’s not resisting, she just lacks a faster gear. Younger the Frustrated wants to get somewhere. Always, an abled somewhere to hurry to on the way to another Important Place. Older could be fearful about anything, I suppose. To be fair, Younger could want to get elsewhere for any reason, perhaps a reasonable one. In my gut, though, I interpret this scene as a disabled person taken out on an excursion by a personal support worker, easy gig for them. The relationship is both paid and overtly uncaring. It’s happened before – I sense Older accepts the lack of concern as the cost of coming to the zoo. I ask you: when you were a child, unable to arrange a trip to McDonalds, the movie theatre, or the zoo on your own, wasn’t it enough to just go? When I turn my head to see if anyone else notices the pair, I witness everyone else involved in their own lives, couples and families, my own son and daughter fighting over who saw the first polar bear. Kaz says “Me!” Aria says, “No, me!” I wouldn’t come here if I didn’t love them. I wouldn’t take them if I didn’t love them. I am privileged to love them. They are privileged to be loved. Is that right? That shouldn’t be right.

Kaz is late for the special van that couriers him and a few other disabled children to Galt Collegiate. By this point in our lives together, my self-appointed job title is “Leaving Specialist.” From the time he entered kindergarten until now, a strong organizational structure conveyors, coerces, and coaxes Kaz to leave the house in the morning. First, music from downstairs. Then, I climb the stairwell and call to him from his doorway. (Lately, he picks his own clothes.) Then, breakfast after he removes his Invisalign. Breakfast’s intricate movements: for the past few days, he’s attempted to choose an item or two from the fridge. Item choice influences pacing because peanut butter takes minutes to spread on crackers, an apple thirty seconds to slice. Breakfast is carefully arranged – he gets a halfway warning, a 5-minute warning, and then an absolute final warning to leave the table and dress for outside. Ding, louder ding, loudest ding. Waiting by the door, of course, are his bookbag (packed with a lunch made by his mother that he won’t eat, but which we must pack else the school will call us to bring one he also won’t eat), coat, and boots. I have streamlined everything, economized all. Milk in the fridge stands ready to pour, his go-to foods always accounted for and facing frontward, otherwise the routine will be disturbed, Kaz will angrify, and his chances of catching the bus reduce. If we fall behind, there is but one absolute truth and certainty: he will not, cannot accelerate. The factory installed a single low gear. If we fall behind, no admonishment can quicken him. This deep understanding of intellectually disabled (ID) physics enables me to discern the nature of care relationships in the wild. When I encounter ID people in public, I watch their carers. Are the carers in a hurry, at odds with their charges, or in synch? My son may never know this until the day I am gone, but the fact that much has been cleared away for him, that preparation and expertise smooth his progress, is a mark of love through action. Love is also that I understand he cannot be made to go faster, that slowness is his nature. If I were to shout and scare him as I was myself so often scared as a child, then he would startle, yet not move faster and quicker. And when I see him startle, I see myself, and I never want to see myself that way again, too scared to even move. Too heavy to move.

At the Toronto Zoo, I order an iced lemonade for Kaz and a croissant for my daughter Aria. Kaz savours the liquid, nursing it for over an hour; my daughter gobbles the croissant. Next to the entrance to Africa Savanna, Kaz sets his lemonade down on a concrete railing and tries to locate the biggest lion, but they hide from the sun, undetectable. When he turns back to his lemonade, yellowjackets swarm the rim. He looks up to me, asks me to get them away. Though I’m not scared of being stung, I know that stinging will happen with so many wasps crawling on the top, several already past the straw aperture soon to reach the sugar water. Plus, he shouldn’t drink the thing now that the wasps are in there. Plus, I want to teach him to respect danger. So I say “Let’s leave the juice for them. They’re yellow. It’s yellow. Yellow things go together.” But he does not accept my silly reasoning and begins to rage, screaming about his Frink, how it’s his, how he should still have it, noowwwwwwwww. The meltdown continues for another thirty minutes. The lions refuse movement, too.

Two women sit across a coffee shop table from a middle-aged man. He smiles oddly, askance from them both. Only one woman speaks to him, often in a sing-song voice about his “treat.” Every few minutes, she asks, “Do you want your treat?” Each time, he nods in return, says, “frozey lemonade” while continuing to smile. The one that doesn’t speak to him continues to not speak to him. In a minute, the one that talks to him leaves the table, soon returning with a yellow semisolid liquid in a large plastic cup that she places in front of him. The one who doesn’t speak to the man mentions her previous night spent with a boyfriend and how much of an asshole he is. Apparently, he’s handsy and cheap. The one who singsongs to the man responds with a generic sympathy no more authentic than her singsong interactions with the man. Now it’s her turn to talk, and she describes an aggressive client, pausing only to coo to the man who smiles oddly, who is not aggressive, no no, he is good, good. She talks to him like a dog. Then she complains about another client who soils himself and needs constant watching, otherwise he’ll run away. The one who doesn’t talk to the man mentions how much she hates her ex-boyfriend, who always walked around the house naked. Though she didn’t exactly hate how good he was in bed. The singsong woman watches the liquid level in the smiling man’s cup, as I do: the meniscus vibrates slightly as trucks rumble by the drive-through window. How often does the group home send someone to take him here? How often does he get his treat? Is treating the only activity he does outside the home? Is there anyone to love him?

From the time he could walk, Kaz helped me take out the garbage. Once a week, we used to drag the blue, grey, and green containers streetside. Early on, he play-helped, but even when he contributed nothing except trouble, running underfoot, chucking Frink containers out of the bins, overturning the bins, and shoving bins onto the street, I considered this activity his ‘job’ and he would be rewarded with apple juice after we finished. As he became older, repetitively shown what to do week after week, year after year, and given so much juice, he eventually became able to perform the task himself. Once he completes a cycle (garbage out in the morning, bins back in the evening) correctly, without cueing, then the reward comes: a trip to the McDonalds on Main. Frink, from the fountain, classic mix: two-thirds Nestea, one-third red Fruitopia. The visit has its own ritual: we try to sit in the same place in the restaurant, across from the fish tank. We locate the sucker fish who hides in the hollow tree. We look for anyone else disabled. I don’t say what I often wonder: who will take him to McDonalds after I am dead? I know the answer already. Either no one, or people who don’t care about him. After a refill, we leave.

Another restaurant, this time Mandarin on King Street in Kitchener. Mando is Kaz’s favourite – he can see all the buffet items and pick exactly what he wants. Fries, onion rings, gravy, and California roll sushi, an undeviating selection. Everyone else at the table – Janet, Aria, me – drink water, Aria with double ice because I spoon out mine and make the exchange. Kaz gets iced tea. Across from us, a disabled pair of young men sit at a small rectangular table. One of the men is dressed as life-size Super Mario, red cap, suspenders, the whole deal. The other man has pronounced retrognathia and strabismus. I hear a speech impediment, a heavy lisp but also dysphonia to boot. As I eat my undeviating meal, chicken fried rice and chicken balls, I map the dynamic between them. Super Mario makes several trips to the buffet, his heaping plates scarfed down and replaced with more. He’s genial, always answering “Yes” to the other’s pleas to hang out after dinner, to hang out at other times. “Let’s hang out later” says the pulled-back jaw man after perhaps the two-dozenth “Yes” to the same question. It’s unclear if the man has been stood up or ghosted by Super Mario before, or whether his anxiety reflects being ignored by others. He pulls out his phone and shows Super Mario something. Retrognathia giggles, Super Mario guffaws. “Isn’t this fun?” Retrognathia asks for the tenth time, adding a new variant, “This is so fun, isn’t it?” As per the ritual, “Yes” comes as response. In time, the waiter comes by, asks “How are you going to pay?” in what I deem a not un-nice way, a not-mean way. A regular way. The normal way. Super Mario points wordlessly to Retrognathia, who volunteers that he will pay. I can tell that this was the deal. Retrognathia’s credit card doesn’t work on tap, so the waiter inserts it into the machine for him, but Retrognathia doesn’t know his passcode. Retrognathia calls someone on the phone, places it on speaker. Someone I assume is his mother patiently recites his code over and over again, a code for a card that is quite possibly hers. The code doesn’t work even when the waiter puts in the numbers. The waiter looks to Super Mario. “Can you pay?” he asks, but Super Mario smiles and says that he cannot. “Can your parents come and fix this?” he asks both of them. Have they been here before? Does he know they have parents? Realizing this interaction is attracting a lot of staring, the waiter commands the two men to stand up and move to the front of the restaurant where the manager will “work things out.” When I finish eating ten minutes later, I walk past the two men sitting at the front. Super Mario stares ahead happily. Retrognathia talks down into his phone, an image of an old woman looking back at him.

Excerpt from Shane Neilson’s Imaginary Last Will and Testament, as Written on a Brown McDonalds Napkin Using Red (Provided) Crayon

For my son:

1. Frinks, once weekly

2. Spotify account

3. Gorilla stuffy, medium size

4. Computer with Garageband

5. Someone to love

*What to feel, how to feel: Lyric essays on neurodivergence and neurofatherhood* by Shane Neilson

In What to feel, how to feel, Shane Neilson dazzles in the lyric essay form. Focusing on non-neurotypicality, Neilson investigates his supposed difference of self while also holding to account society’s construction of that difference, moving from his early childhood to adulthood and then back again in terms of a neurodivergent fathering of his own son. Covering subjects that have yet to receive attention in Canadian literature, including how the medical profession discriminates against its own, Neilson’s poetic accounts of stigma and self-discovery interleavened with literary history mark a first in our letters.

Shane Neilson. Photo credit: Zdenka Neilson

About Shane Neilson:

Shane Neilson is a mad and autistic poet-physician who practices in Guelph, Ontario and who teaches health humanities at the Waterloo Regional Campus of McMaster University. His prose has appeared in the Walrus, Maisonneuve, Image, the Globe and Mail, and many other places.