Breath & Shadow
A Journal of Disability Culture and Literature
The Happiest Place on Earth
by Erika Jahneke
I’m here because my roommate says I’m not open to new things – which, of course, she made sound like the chance for untold adventures, but has really led us to waiting in a truck stop on the way to Disney with a bunch of other disabled tourists. The only new sensation I’m filled with is a sticky banquette against my crippled butt. It seemed like a good idea at the time, sliding over, to try and be daring, and most of all, diffuse some of the fear, pity, and tiny sips of revulsion I see in the eyes of the other patrons.
I wonder if our four blind tour guests can tell we are being stared at. I almost envy them, until I think about The Voice, that sticky, gooey, too-loud baby-tone that the broken and slightly fucked-up quickly learn to loathe. Too nice, too slow, and too loud, as if we’re deaf, and yet, cheerful, as if we’re freakishly giant babies lured here by their new children’s menu.
I started getting The Voice when I was a baby, but at twenty, it’s like trying to force myself into a fussy pinafore my grandma gave me that I can wear only to take pictures in, complete with the itching at the neck and a frantic urge to be anywhere else. I consider pretending to order alcohol so that people think I’m Funny and Adult, the two things on earth I most wanted to be that summer. The four blind women on the tour with us, while far more attractive and mysterious (so beautiful that they inspired “What a waste,” comments from strangers, whereas I am still in the same “Such a pretty face” zone that I’ve been in since my complexion cleared up). In that moment, though, settling in that restaurant to await the second van which had been separated from our convoy, the damned have not been spared anything.
Facing The Voice is not a new adventure, either, and when I think of it, I glare, but only at Jenelle’s bent head. At twenty, I’m too afraid to be mad at people in front of their faces. It’s better to hate myself, or Newt Gingrich. I glare at the top of her head as if to say “Disney? Really?” even as I try to smile once she’s finished ordering pancakes. When you have a disability and travel with an outfit called “Yes We Can Accessible Tours”, beggars can only choose so far. We’ve gotten separated from the other van in our party, which has occasioned much poorly received bitter humor from me already. (Years later, when half of America adopts “Yes, We Can” as an eager slogan, it’s hard for me to believe. I want to join in, but you can only be that young and hopeful once).
Jenelle promised me fun, but so far I have hash browns, eggs and cheese. I could have that at home, with the remote. I don’t say that again, trying to be positive and look up as though something mind-expanding was going to happen every time the little bell on the door dings.
Even though there are a fair amount of men with baseball caps and untended mustaches here, I can tell that this is more of a diner than the actual truck stops where my dad made us stop on family vacations. Mom said it was because he was cheap, but Dad said the food was good, and there was always a lot. Those places always made me uncomfortable, because we were usually the only family inside, and mine was always the only tiny wheelchair. Even being bigger and knowing words like “male gaze” does not change the way that feels so much.
I look over at the next table and my cheeks flush, only partially because, freed of routine and my lingering goody-goody instincts, I’m so caffeinated on free refills, I would not be surprised if the table levitates. My friend, hopelessly romantic even on the best day, takes my restlessness as a sign that I’m lovelorn and prompts me again.
“Go talk to him.” I almost want to tell her I’d only do it to make her happy, but how many hours of old television did I watch where even squeaky-clean characters have a fling on vacation? She would have thought less of me, probably, so it seemed better to appear prim rather than dorky enough to have watched that movie with Nancy McKeon and Michael J. Fox in summer camp. Twice. I couldn’t stand it if Jenelle ever found out how much of my life was pretend before I met her, so a lot of the time my role in the friendship is to agree enthusiastically with her plans. So far, she hasn’t caught on yet, and I plan to keep it that way.
And doing so many new and unexpected things has brought me out of myself in a way I appreciate, even when I don’t love the things in themselves so much. I like thinking there are many versions of me I haven’t met yet who enjoy athletics, eyeliner, or tempura. Living like everything is up for grabs is like being my own Christmas present, and it’s enough of a promise of fun that I don’t think of the new paperback I left at home.
“Who?” Although there’s only the one, a wheelchair racer so perfectly imperfect it’s like he’s sculpted, and yet he has deep blue eyes and a full, almost girlish mouth. Every time he catches my eye, my blood almost fizzes. I can tell, though, that I am in his thoughts as much as the ugly wallpaper in the hotel lobby and plan to brush against his sweater a few more times and write some yearning poetry about it, as I had done about somebody every spring since seventh grade. Those feelings were not about real life. Even sitting in a dumpy diner with someone that I’d think of as my best friend if we were both ten was a lot more real than all that moony romantic stuff, which was a thought that was so emotional I pretended to look for our ride as though I was just dying to come face to face with all those animatronics.
I even made myself think I could hear a van braking in the parking lot, but it was a tour bus filled with really old people, some of whom actually have blue hair. Tom Brokaw and his book aside, they don’t seem like the Greatest Generation when they look at us like something unpleasant that died. In their day, I realize, there would have been a nice Special slot to shove us into where they wouldn’t have to look at us. Some of them seemed to miss that a lot. Some of them just probably figured having so many of us there would make them have to wait for their fruit-topped waffles, or maybe their nylons pinched.
I took a lot of things about my identity personally in those days. My roommate taps my shoulder; apparently, she told me a story and I missed it, following my own thoughts. “Who?” she mocked, making a wide innocent face that I guessed was supposed to be me, but reminded me of a doll that my aunt had given me to entice me over to the feminine side. Something about its glassy stare and glued-on lacy eyelashes freaked me out instead, so I left it in the bottom of the toy box. Just like most of the rest of the girly stuff, it hadn’t really taken.
“I don’t know what you’re talking about.” Where the hell was that van? It would be excellent if it showed up right now. Even though for the previous fifty miles, I wanted nothing more than to not be jostled and bounced in the shockless vehicle, something that my roomie escaped by falling asleep, and, of course, looking better than ever instead of wild-eyed and messy-haired. Of course she would, I thought, and then sank back, shocked at my flash of bitter envy. I almost turned away as if she could read my mind as I was convinced my mother could until I was a freshman in high school.
Even so, being seen as the less-interesting opening act, the one that can help with your crossword puzzle, is beginning to rankle, and I thrust out a proud, pointed chin. Again, I listen in vain for the van to carry me away from my strong feelings and the promises I might make. I eat the last of my fries and begin doodling with my fork in the leftover ketchup before it occurs to me that I should be doing something more womanly, but all that thought conjures up is an impulse to empty posing, and wondering if I have a best side, I lay the red-tinged fork aside.
“You only have the one life,” she urges. “Get in the game for once.”
Incredibly, her pitch starts to work, despite being the impetus for this cursed trip in the first place, as well as countless jammed fingers pretending I’m a disabled jock when flipping pages is my sport of choice. Bad dates, and worse bladder infections, still it works, as if I can just decide that there is an adventurer in this pale impaired body. I dip some more greasy fries in ketchup, since she doesn’t have to be a really healthy adventurer, and start planning which week of disastrous sports practice I’m going to enliven by smiling at him and making some reference to our seemingly doomed Anaheim adventure.
“Hey, Alex,” she calls, as though just sitting in red banquette has turned her into a Tuscadero sister. I almost wait for the live studio audience of my early childhood to start oohing and ahing and giggling at her catchphrase, but then he’s there, beautiful but less perfect without his racing chair and that sexy sheen of Coming Home racing sweat that clings to him after practice. Here, he’s just a nice-looking guy seeking some accessible PG-rated adventure like us, even if it does seem like a contradiction: the clean, safe, adventure.
For once, I say what I really think, like I would in my own living room. “We should hijack the van, and go to Vegas. Or New Orleans.”
“You’re so funny at practice,” Alex says, and smiles his stunning smile.
I do the self-hating girl thing and pretend to swat the compliment away, though it has made me happy in a way no A ever has, no matter how thoroughly grubbed for. “Even though I suck?”
For a moment, a lifetime of personal bests and participation trophies makes me think he is going to protect me from my failures as a racer and my intermittent skills as an adaptive putter of shots and roller of bocce balls, and say “Of course, you don’t suck. Considering your situation, you do just grand.” Everyone else does, but it’s different when your situation is someone else’s situation too, especially when he gets up two hours early to practice at the track at the high school before going in and studying for six hours.
He says, “Yeah.” with a smaller smile, and I remember the few times when everything went right at practice and the shot or ball seemed to effortlessly go where I placed it. Did Alex feel that way all the time? Maybe. I take a big enough sip of my fourth glass of soda that I may never sleep again and say, “You’re amazing.”
Alex turned my way and looked modest. I wondered if it was an act, but decided I didn’t care.
“It’s not that hard. I could meet with you before practice and work on your form if you would like.”
Knowing that he was just talking about sports threatened to make me sadder than the summer that Jenelle and I had roaches and had to scurry around putting boric acid in all the corners, but I was just about to say how nice that would all be when my cellphone, put on the table so I don’t look like one of Those People, rings.
“Hi! Astrid!!” a voice so cheerful and upbeat I don’t recognize it says, “Did you give up on me?” It’s Rachel, the leader of our tour group, who seems to think we are best friends, despite our whole relationship lasting for two phone calls and about four hours of driving. Although it was beginning to seem as though beginning that trip happened in another life.
“No, no,” I chuckle that chuckle demanded by peppy able-bodied women with great hair who use words like “psyched” and are not kidding at all. “Of course not.”
“We took the wrong turn at Needles.” An hour and a half ago, and she was just figuring that out now? In my usual life, that kind of goofy inefficiency would drive me crazy, but I’d left all that behind in Phoenix and was in no real hurry to spot the giant mouse.
“Oh, no!” I say, and laugh, one hair toss away from being flirty, like Jenelle always is. The disloyalty of the thought hits me like a cold chill when my roommate catches my eye and I mouth Rachel while telling Rachel herself we’ll see her in a while. “So, we have about an hour to make a run for it.”
“Yeah?” He looks at me harder than anyone not bearing a Bible has ever looked at me, my stomach flips, and we kiss. It’s quiet and discreet as well as brief, but it’s not my first kiss, just the first one where I understand what the fuss is about.
We barely have a moment to look into each other’s eyes again, before, with a motor rattle and a cheerful honk of its horn, our chariot awaits.
Starting with my birth, it’s not the first time being early has bitten me in my butt. I scramble into my chair, in full view of old ladies who desire a floor show with their banana cream and lemon meringue. I would like to say that I’m used to moments like that. Actually, I ought to be, never having known my life as other than an object of some people’s curiosity, but the emotions welling up from the kiss leave me feeling as if I were sitting in this busy, over-bright restaurant topless and all I could feel was the urge to cover up.
Maybe that’s why I didn’t linger, why I went ahead as if I had no plan but my original, half-wanted Disneyfied one. Also, not to be overly hard on myself, I couldn’t drive, and had maybe forty bucks folded in a budget-conscious double crease in the pocket of my cheap black handbag. If only I could explain that to my subconscious, that still dreams of the moment I failed myself and chose safety, predictability, and the expected over what could have been – if I could be romantic and twenty again – true love. As opposed to what, all the love-Splenda out there? It doesn’t matter now. The thought just runs like a tape without my thinking it anymore.
Of the actual trip, I retain little, although for a while, I kept some blurry-looking photos of me and Jenelle getting splashed in the boats for Pirates of the Caribbean, almost as if we’d be cast in the part of trouble-free college girls, since the photos didn’t share the next frame, Rachel and her earnest helper whose name I have forgotten, sweating and grunting as they assisted us into the make-believe boat. When we’re finally arranged, the other tourists clapped, as if for a show that is grittier and probably, in retrospect, more accidentally erotic than anything purposely arranged by the powers that be at the park that day.
At the time, my blush is fast and furious, not only because they are reflecting why I ran away from my feelings for Alex on a huge screen, all my well-fed country people with their cameras, fanny packs clicked protectively around expansive waists, and bold cartoon t-shirts. Even though I have a cartoon on my shirt, too, I’m not like them. Whatever I do is more serious, because there is always someone watching and wondering if I’m okay or can even be out alone. It really makes it hard to seize the day that way, or even be alone with somebody you might care about.
We did kiss again, at my instigation, both the darkness of Space Mountain and the prospect of imminent death making me bold, but in the end, the love story belongs to Alex and his practice teammate, a woman with glossy hair like an Irish setter. To top it off, I would have guessed she was gay, but after all, what did I know? Seeing the glint in my friend’s eye as I told the story was at least as important as the kiss. That was hardly the most heterosexual thought in the world.
“Can I offer you a piece of advice?” my friend asked as the van embarked on the trail of freeways leading away from the Happiest Place on Earth. For a while, there’s still stuff to watch outside the windows, California freeways being almost as green as someone’s garden. It’s only after entering my home state that they become lonely and stark, but I don’t think that way about my hometown then, and just watch the sun sink in a puff of pink clouds and feel grateful that Alex is in the other van this time. What I don’t do is turn toward my friend all flushed and eager to hear what’s wrong with me this week. It feels like a tiny beginning, which I savor like the mint at the end of an Italian meal.
“Okay. Sure.” If she notices my attitude’s changed, Jenelle doesn’t say anything, likely exhausted from being the most sprightly cripple in the Four Corners region all day and letting our teammates bump into her accidentally-on-purpose. “I guess I don’t have to take it.”
Erika Jahneke is flattered to be included, but sometimes struggles to stay amused that, after devoting herself to writing for years, the piece that really excites her friends and family is a reader quote in Oprah magazine that took her five minutes to write. Someday that will be a very funny story, she has decided. In between wondering if getting retweeted by character actors on “The Wire” counts as street cred (probably not, though still cool enough to mention in this bio), she writes and does occasional activism, despite the twin challenges of CP and living on the surface of the sun for over thirty years.