If you’ve read just about any disabled person’s blog—especially if they’ve got a “Top Ten: Don’t Do This When You See Me” list—you already know how I feel about people telling me that I inspire them. There’s even a term for it—“inspiration porn.” (See Stella Young’s TED Talk on the subject.) It’s kind of, I guess, like NPH’s Food Porn Twitter Account, except with disabled people instead of food. I suppose we, or I, should be flattered, I mean NPH and his followers like the food with which he tantalizes the world.
Anyway, this is the scene:
Me, at the grocery store, reaching for eggs or yogurt, butter, or ice cream or doesn’t matter, as long as it’s on a high shelf, or in a freezer case, anything that involves a lot of leaning.
Or me outside a restaurant waiting for a table.
Or me eating at a restaurant, presence of friends and family optional (sorry, AT&T).
Monologue version one:
“Excuse me, I don’t know if you know God, but he really helped me through my (insert crisis here), and I saw you, and…”
Monologue version two:
“Excuse me, can I help you get that? No problem. You know, I have a (insert friend or family member) who walks with canes [variation A: is in a wheelchair] just like you, and she just inspires me so. I mean, nothing stops her…”
Monologue version three:
“Excuse me, I don’t mean to disturb you, but I just wanted to say, it’s so nice to see you out today. Seeing you just makes me count my blessings…”
No, it isn’t just little old ladies who say this stuff, and yes, patting me on the head makes it worse.
I know I should be flattered, but it’s just so exhausting being inspiration porn. I hate monologue number three most myself. I always think of toilets, as in, “excuse me, what makes you think my life is in the toilet?” Maybe I think of toilets because these encounters almost always happen around food.
At this point, you’re probably thinking: “Ok, same old, same old. Don’t say this stuff. You’re a person, not a wheelchair. You’re a human being. You have a life. You’re only getting yogurt, nothing inspirational about that. We get it. Next.” I’m not going to object if you censor yourself, that’s true. But I want to go somewhere else with this story. I wonder: why do these encounters always happen around food? Well, almost always, waiting in line at the bank is another frequent locale, but yeah, usually food.
I like food; I always have. Cancers are always centered around food and home, especially Moon Cancer babies who are ruled by their stomachs. MasterChef is my guilty pleasure. I like it when Gordon Ramsey isn’t screaming his bloody head off. They’re much nicer on MasterChef Australia.
Beyond my astrological predispositioning, food has always been the social center of my life, precisely because of my disability. I may not be able to shoot a game of hoops with nondisabled people (nothing wrong with the people who do) but a beer and some wings, coffee, pie, and conversation, Dim Sum? I’m all in. When I was a kid, my best friend once confided as to why I wasn’t included in certain outings. “I’d feel incredibly awkward calling you up, J, and saying, ‘We’re going ice skating, wanna come watch?’” But hey, there’s no awkwardness around sharing a pizza.
It sounds cliché but there’s an intimacy around food, around taking something into your body, or even, in an awful drunk-off-your-ass kind of way, expelling something out of it. There’s an intimacy around our language too: breaking bread with someone implies something deeper than hanging out shooting a game of hoops.
Disability necessitates an intimacy as well, certainly sickness does, though those aren’t the same thing. I’ve been poked and prodded my whole life, fitted for leg braces and wheelchairs, shared my medical history with more doctors, nurses, and therapists than I care to count, had my body touched and manipulated by physical and occupational therapists. Being disabled means giving up a certain privacy that many take for granted. When you’re sick this happens too, as you’re subjected to hospital food, relying on assistance in the bathroom, or needing a hand in and out of bed. You give up or over a certain control of your body. Give over a certain intimacy.
Eating is an intimate connection to one’s own body. On the one hand, when your body isn’t working right or doesn’t function “normally,” you’re more likely to feel disconnected from your inner workings; on the other hand, this disconnection means you are more intimately attuned to the way your system does or doesn’t function. Pain overrules everything.
I may not be able to shoot a game of hoops with nondisabled people (nothing wrong with the people who do) but a beer and some wings, coffee, pie, and conversation, Dim Sum? I’m all in.
Which, of course, doesn’t really answer the question of why strangers feel the need to tell me I inspire them as I’m reaching for Rocky Road or a box of frozen shrimp. Except maybe it does. Food and the body are connected. We need food to strengthen and fortify our system, and at no time does this become apparent more than when we’re ill, vulnerable. I’ve been feeling a little more charitable toward the folks in the grocery story or bank line (hush your mouth, I hear my disabled friends saying) of late, as I’ve been dealing with a friend’s illness, watching her consume that bland hospital food, watching her cede control to others. It’s hard watching the decline.
The aspect of inspiration porn I hate is strangers’ assumptions about the difficulty and fullness (or lack thereof) of my life without really knowing anything about me—besides what I may be craving at the moment or my taste in check design. The assumption that disability means a horrible and diminished existence—the realization of what I represent to them—doesn’t exactly make me feel good. And I must confess because monologue one, two, or three happens to me every week of my life, my responses have become rote. Good mood: smile, nod, say thank you. Bad mood: a tight-lipped smile, or a half-smile. Smile, nod is usually on automatic pilot. I generally don’t say anything for fear of someone launching into a monologue about Jesus. (I’m ok with Jesus, it’s just that these monologues happen so frequently that I know what’s coming.)
I will admit, though, I hadn’t really much considered where these monologues come from. What pain or loved one’s or friend’s experience with disability or illness? Which of these engages them to make this gesture of kinship with me?
An intimacy or vulnerability happens when you’re sick, when you cede or lose control of your body. I’ve always felt that way with food, too; there’s an intimacy—a vulnerability—that happens in conversations as you eat, a nourishment of sorts, of the mind as well as the body. Go read the poetry of Lee Ann Roripaugh. Not much of her food-themed poetry can be found online, but in the interest of nourishing your soul, read the ones you can find anyway.
I don’t think I’ll ever be exactly happy (I’m not even sure that’s the right word I want here) about monologues 1, 2, or 3 when they occur, because, yeah, they do smack of sentimentality or hubris that presumes my life sucks.
But today, right now? I’m ok with the fact that people presume an intimacy and kinship with me; that I make them feel safe enough to be vulnerable as we both reach for the peach yogurt.