Hey y’all, The Raw Story interviewed me this afternoon in response to picking up my last blog post. Check it out!
The following was a monologue I submitted for a student-run performance at Duke. I was going to write a blog piece on this issue, but felt that it would be better to keep it in its original form:
Having a visible disability is like shark bait for ignorant people lacking scruples. I swear, the mere sight of crutches is like blood in the water. Having lived with a disability all my life, I’ve learn to accustom myself to the inevitable stares or occasional questions, but the days I dread are the ones in which I’ve accidentally crossed paths with someone who’s decided that I am the perfect opportunity to exemplify God’s power to heal. On the spot. I’ve been taught to handle it with grace with a polite smile and nod and move about business as usual. However, there’s no manner guidebook for actually being prayed on. I don’t me for. I mean on…
I must have been 15 and my brother and I were off on a routine trip to visit dad for school vacation. He and my mother, feeling that it was a more efficient way to handle the pre-flight business, sat me at a bench outside the security checkpoint while they headed up one floor to check in the luggage. From the corner of my eye I glanced at the woman and her elderly mother cooing to a stroller in soft Spanish and proceeded to wait to my cue to move to get in line. Shortly thereafter, my mother and brother returned to collect me and as I stood from the bench, the woman approached my mother.
“May we pray with your daughter?” The woman asked. No stranger to such inquires at this point, my mother mumbled “Sure”, and motioned for me to follow her. Poor mom. I am sure she never would have consented if she had paid proper attention to the usage of prepositions but the next thing I knew I was caught in what can only be described as a quite unholy prayer sandwich. The woman and her mother placed one hand on my back and one on my chest and right there, in the middle of the Ft. Lauderdale airport, began to feverishly pray on my body for Jesus to heal me. Between shouts of JESUS CRISTO! and HEAL HER FATHER GOD! their bodies shook violently, as if wracked by father, son, and holy ghost all at once. I looked at my mother’s sheet white face and mouthed “MAKE. THIS. STOP.” She looked helplessly on, unsure how to make the scene come to a swift end without seeming rude just gave me an apologetic shrug. I finally had to bite my lip to keep from laughing, as did my brother, because things had reached level of Salvador-Dali absurdism. Once the incident passed, we made our way to the gate without saying a word, collectively too stunned to believe that yes, that really just happened.
Did I ever tell you that it really just happened more than once? More than once. So there I was with mom and my stepfather this time, wearily making it to the parking lot with our luggage yet again at the Ft. Lauderdale airport. What IS it about the fucking Ft. Lauderdale airport? The man pushing out luggage cart stopped at our car and asked my mom (because why ask my consent, right?) if he could pray. My stomach turned. Oh no, not again. At a loss of what to do she nodded-MOTHER, NO!-, and he approached with the same caution one would approach a frightened dear and asked if I believe in prayer. I choked out a yes and picked a spot on the pavement to stare at and waited until it was over. He held out his hands and prayed for God to heal me, but with the added twist and flourish of asking God to take the Devil’s hands off me.
I spent the ride home yet again in stunned silence, not from shock and mild hilarity, but from stunned humiliation. At least he didn’t actually touch me this time…
Though Individually uncomfortable and at times, even amusing, these incidents collectively have left scars on me as real as the ones on my body. Rather than heal me as they intended (and you know the old maxim about good intentions), they helped break my self-esteem. They brought forth questions I’ve sought to stifle, questions that repeat in my head with sadistic rhythm when I’m out in public. Do I really seem that broken to people when I walk out the door? Does my body project a fate seem so grim that I actually need saving? Every once in a while I have to actively remind myself that what happened to me was an objective case of a genetic splicing error-not the Devil’s handiwork.
So, what have we learned here? First of all, I’ll never take my grade school teachers for granted again because prepositions really fucking matter. Just ask my mom. Secondly, when people stop someone with a visible disability and asks to pray, the problem lies not in the good intentions or wishing someone well. There are days I appreciate the feeling that people are out there rooting for me. The problem is that someone at first glance makes an assumption that my life is so bad and full of suffering and miserable that I need immediate holy intervention. What people should really be praying for in this situation is to have their good intentions supplemented with good judgment because I think that’s what God probably would have preferred. Heaven knows I would.
Like many a fresh-off-the-press graduate, I just have undergone that daunting, tedious, soul-numbing process of apartment hunting. I’ve gotten my degree, more or less grown up, and now it’s time to move on. And by moving on, I mean that Ineed to stop living on campus. Like every savvy domicile seeker, I created a master checklist: rent, location, utilities, etc. The one crucial element I overlooked however, was doorknobs.
You see, my condition, Epidermolysis Bullosa, among other things, causes recurrent scarring. This scarring has done a number on my hands over the years, eventually causing my fingers to fuse together in permanent fists. Dextral deficiency has just always been something I have always had to compensate for. Ho Hum, I shall never be a seamstress. Or a flautist. But I digress. My lack of nimble fingers or grip has generated over time a running list of arch-nemeses, not the least of which is doorknobs.
I was therefore dismayed to find that my oh-so perfect new sublet, with its exposed brick and sprawling square footage, in actuality held me hostage due to cursed tightly fitted knobs on every door.
Fortunately, the fix was simple enough, only requiring a trip to home depot for lever handles and a call (or two) to maintenance to have them installed. The pad is perfect, and I am no longer trapped in my own home.
However, navigating a world that was not made for you isn’t always that simple, and knobs and I have had more disastrous run-ins, requiring swift decision making and ingenuity on my part. Not every place is my apartment where I can adapt accordingly. And knobs are everywhere I tell you. Everywhere.
Take that time my father, brother, and I had a go at DC’s restaurant week. The old, established steak house we decided on was rife with DC politicos of all sorts, and the décor set the perfect ambiance for such a crowd, with dark wood panels, crisp linens, and bow-tied staff. Just as the evening was winding down, a trip to the ladies room turned into my own Mission Impossible, with all the stakes and no stunt double to bale me out.
The stalls all had baccarat crystal knobs. They were quite fetching, so at first my preoccupied mind failed to notice how they could become a serious issue. I walked into the stall without really giving it a test to see if I could turn it before I let the door latch behind me. This was a heinously problematic oversight when I tried to leave and had no way to get out. I was alone I could have just waited for some Good Samaritan to open the door if I called for help. Pride put that in the “absolutely not” category. I didn’t have my phone to call the people I’d come with, and even if I did, the circumstance of my entrapment would have had to make for a slightly awkward encounter with the ladies room for my dad or brother. The glint of the crystal mocked me, and if doorknobs could point and laugh, this one would have. Pushing the panic down from creeping into my throat, I noticed the gap between the bottom of the stall doorframe and the floor. The only way out was down, and so I got on my stomach and shimmed my way under. It was relatively smooth sailing until the belt on my sweater dress got stuck and I was flopping and wriggling like a freshly gutted seabass sprawled on the floor half-in, half-out with my skirt hiked around my waist. Eventually, I freed myself, brushed off the dirt and God knows what else, and fixed my dress before anyone else came in. I mean, seriously, could you imagine what someone would have done if they walked in and saw me? Like really, picture it for a sec. …Yeah.
I made it back to the table no worse for the wear (except, maybe, ego) and I did get a damn good story out of it. But the point is, everyday I am reminded the world was not made for me, and I was not made for it. Every stuck door, or stubborn knob is a reminder of my inability to navigate my space. It also takes the phrase “with one hand tied behind my back” to a kind of personal level for me. Is it frustrating? Absolutely. But its forced me to work with what I have to make my daily life function. I see the world and my place in it from a very unique lens, and forced certain creativity and need to think two steps ahead. As I enter grownup land and figure all this out, there is always going to be a doorknob and I am always going to have to figure out a way to sneak around (or under) it.