Emily Rapp

Emily Rapp
Location
Santa Fe, New Mexico, USA
Birthday
July 12
Bio
Emily Rapp is the author of Poster Child: A Memoir, and The Still Point of the Turning World, which is forthcoming from Penguin Press in March 2013. She is also the author of many essays and stories in the New York Times, the Los Angeles Times, Bellevue Literary Review, The Sun, Body + Soul, StoryQuarterly, The Texas Observer, and other publications. She is currently Professor of Creative Writing at the Santa Fe University of Art and Design in Santa Fe, New Mexico and a faculty member with the University of California-Riverside Palm Desert MFA Program.

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MARCH 14, 2011 8:14AM

How We Talk About Disability

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Disability, the Mob, and New Narrative

Today Ronan’s new books arrived: Farm Tales and Jungle Tales, colorful companions for his favorite book: Fishy Tales. (I’m a bit disappointed that “raccoon” was misspelled – and do raccoons live in the jungle? – but his “tail” in the “tale” is the right one.) Pigs with curly pink tails, the blue whale with the biggest tail, the octopus (“no tail but arms, all twirly whirly”). The cow on the farm moos when you press his nose. Ronan is warming up to these new additions to his bookshelf, but he still favors the fish book (and, of course, the live fish at the pediatrician’s office). We’ll take him to the aquarium in Albuquerque.

Today, in my first foray back into the world of news/CNN for two weeks, I learned about the recent mob bust in NY/NJ/RI. The police are falling all over themselves with excitement about the arrest of some major players in East Coast organized crime. The televised press conference reminded me of a scene fromThe Godfather II, only the senators have different hairstyles, there’s an FBI spokeswoman, and the mob bosses seem far less distinguished and dignified than they did in the movies based on Mario Puzo’s books. (Can you imagine Michael Corleone murdering someone over a spilled drink? I don’t think so. This is a guy who disappears for years and convinces his former lover to forgive him in less than a minute, and in the middle of the street. That’s pretty slick.)

The mob. I’m reminded of another term that is frequently heard on CNN and bandied about in popular culture, often in reference to the health care debate, and sometimes in commercials imploring those who cannot work to claim their rightful benefits: the disabled. The term has always brought to mind an image of the Barbarian horde, which might explain why I have always, in some way, actively resisted including myself in this group.

I learned to ski when I was six, at Winter Park in Colorado, at a center built and staffed and funded specifically to teach kids like me to enjoy the best sport in the world (I am admittedly biased). No matter your individual physical or mental limitations, someone could teach you to successfully and safely (well, sort of) fly down a mountain at varying speeds. Once, during a ski lesson with D, my favorite instructor, I said, “I’m so glad I’m not blind; that would be, like, so much worse than having one leg.” I don’t remember what prompted me to even think this, let alone say it out loud, but when he looked at me I knew I’d said the wrong thing. “You think?” he asked, knocking a pole against my boot. “You think there’s some kind of ranking system?” We were mid-way down a difficult slope, and I’d fallen pretty hard near the edge. “Uh, I don’t know,” I said, embarrassed now as I hauled myself up out of the snow, but thinking, yeah, there is. And I’m at the top of the ladder; I can hide my disability. And hide I did, in some cringe-worthy outfits (think pale blue,  high-waisted parachute pants and a matching sweater). I was also thirteen, so a crisis for me might have been an inability to roll up my acid-washed jeans exactly the way my friends did, or looking in my locker mirror to realize that my side ponytail was tilted at the “wrong” angle. And hello? Didn’t everything have a ranking system? Every year the junior high yearbook staff handed out awards for best smile, best personal style, best laugh, etc. D was a dope! What did he know?

“Do you want to see what it might be like?” he asked. “To ski blind?”

I most certainly did not want to know. A blind skier is tethered with a rope to a skier who skis behind them, calling out when to turn; the blind skier has to trust the calls and move when they’re told. “Uhh…” I offered.

“We’ll tree ski,” he announced.

“Isn’t that, like, not allowed?” I asked. (“Like” was obviously a key part of my vocabulary.) “Isn’t it dangerous?”

“Are you going to tell someone?” I was not.

“You have to keep your wits about you,” he warned as he skied toward a gap in the trees. “And don’t second guess; just do what I tell you.” Shit. I’d never been very good at that. I agreed anyway.

Tree skiing was an absolutely euphoric experience that I hope to never repeat. Impossibly tight turns on a steep slope, and there was some ducking involved and some sticks perilously close to my face. The shade from the trees made everything darker, icier. I could feel my heartbeat in my eyeballs. The experience of trusting someone to mark your moves for you as you hurtled down a hill at a terrifying clip was completely counterintuitive. There was no control, no sense. D would call out “left” when I thought sure he’d say “right,” and he cut me zero slack; he went fast. (Never take sides against the Family. Remember what happened to Fredo!) The experience wasn’t worse or better than skiing on one leg, it was just different. Maybe D was rash and irresponsible to challenge me on that day, though now I think he did me a favor.

My disability is “easy” in some respects. I can “pass.” I have a job and don’t claim disability benefits, so the government doesn’t classify me as “disabled.” I don’t drive a special car, I spin and do yoga and Zumba and other interesting physical activities. I do have a disabled parking placard, which was actually far more useful to me when I was pregnant than it ever was before. People often say to me, and they mean this as a compliment, “I never would have known you had a fake leg.” (So not one of the “horde” then). I used to eat up these compliments. But “I don’t think of you as disabled” is a complicated statement that betrays a lack of imagination that we’ve all collectively internalized as a society when it comes to our understanding of disabled people, and of bodies in general. “Huh,” is usually my response to these statements, but it could be this:

My artificial leg is an expensive pain in the ass. Each costs upwards of 50,000 bucks (about 80% covered by insurance, maximum), and any artificial replacement (computerized or not, as my new one will be) is still not flesh and blood. I drive five hours and to another state to see a decent prosthetist who knows what he’s doing and doesn’t freak me out. I do battle with insurance companies. Each time I visit the prosthetist (even it’s for a pair of prosthetic hose, which used to be available in only two colors – “white” and, wait for it, “negro") I get a letter from the insurance company asking me if I’ve been in an accident. Will I claim worker’s comp? (No, my writing workshops are not that tough.) I have hundreds of these letters.

Insurance companies don’t want to provide the best equipment (because it’s custom-made and expensive), but if not getting the best equipment means you won’t be as mobile and therefore not as fit, then you might need more equipment to deal with the consequences of not being able to move. I once had an insurance representative tell me that I was not eligible for a policy because “our policies are for healthy people.” First, that makes no sense (but nothing about the insurance industry in this country does); and second, I am, in fact, extremely healthy and physically fit, but I need the leg to maintain my fitness, and no, switching to red wine and getting some exercise is not going to bring my medical expenses down (this was the suggestion made by an insurance company representative at a former job when I asked him if one should choose an HAS or a PPO if one has a high annual amount of fixed medical expenses.) Sigh. We’ll all be fighting these wars sooner or later, unless we’re millionaires, for whom the insurance system works perfectly because it isn’t necessary. In my family we have war strategies for dealing with insurance claims representatives, legends that I’ve inherited from my mother, tales she told me about how to “pass through” to the person who can help you on the phone tree, that magical person not so dissimilar to the Oracle. Someone who can tell us what to do.

And yet we fight on because we must, and now I’m going to be fighting for my son, and nobody will be telling him (or me) that he doesn’t look disabled. Oh well. That little piece of my silly vanity is gone forever, and that’s just fine. Ronan is already making me think in different ways, forcing me to question all my preconceptions, all my prejudice.

A question: if people don’t want to think of me as disabled, what do they think a disabled person is or does or is capable of doing?

This week I have learned the lesson I should have learned on an afternoon over two decades ago while I was dodging trees on a skinny strip of mountain in Colorado. I am a part of this group of people with disabilities – a resourceful, fascinating bunch that defies and also invites metaphor. A mob, I guess. A great big mob of bodies. Mobsters, maybe (and I imagine that some of us are armed). I struggle to find a way to describe us, who we are. Who can help?

French intellectuals of course! The French philosopher Paul Ricoeur talks about imagination as something “wild and untamed,” a force set free to wander in “the mental kingdom,” something “drifting from here to there.” He also thought it was the key ingredient in understanding every word that comes out of our mouths. Why? Because he believed that making meaning should make us, above all else, suspicious. No act of interpretation is to be fully trusted, but interrogated.

Boy do I love Paul. What a terrifically nerdy dude, and the enemy of fundamentalists everywhere. Narratives, for Paul, are a way of “redescribing life.” According to his worldview, stories and fables and tales, and really, all words strung together in a sequence that makes meaning (from the mundane to the profound, from “don’t eat that,” to “I love you,”) contain within them a real wallop of revelatory power; phrases and words are historical and imaginative and all hold little kernels of meaning. (He is the best person to quote when arguing with someone who insists that the Bible fell to earth, whole and intact and in English.)

So if language is the vehicle of experience for most of us, and there’s a leap involved between authentic experience to expression, and this process is guided by what Paul calls “the hermeneutics of suspicion,” then what is the light that shines along this circuitous route by which we think and feel and understand or way into meaning or drift into it? Metaphor. Metaphor is the engine driving our understanding of the world – the only thing that can create, disclose, reveal. It’s the magic wand of meaning and story.

Here’s a little quiz. Part one: how many of these phrases sound familiar?

“the crippling economy”

“tampering with, disabling, or destroying the lavatory smoke detector will result in an enormous fine”

“that is so retarded”

“I am paralyzed with depression/fear/sadness/another feeling”

“these new health care provisions will certainly affect the disabled”

Part two: how many of these narratives do you recognize? A man summits a mountain with one leg. (Think of an NPR commentator, narrating with breathless awe.) Isn’t it amazing when people just, darn it, overcome those damn disabilities and get up on over those mountains with just an eyelash and a toe? What an inspiration! And in the other corner, opposite the overcomer narrative, is the pity party. The spokeskiddo for this story is good old Tiny Tim, the withered boy who is so sweet that he basically has no personality. He just blesses people and doesn’t care that he’s uncomfortable and everyone treats him like the family dog. Not a very imaginative character (and I say this as a great lover of Dickens).

We’ve become so accustomed to the phrases in part one that we hardly notice them. But, wait! What’s so wrong with “the disabled”? We’re trying to be inclusive here and not leave anybody out! Okay. Imagine substituting “the gays,” or “the blacks,” or “the women.” You do not hear that on CNN. Why? Because these terms obviate experience in favor for a false representation designed to speak for the group. It is not, in Paul’s understanding, one bit authentic and therefore cannot be true. (And finally, such a wash of experience is, quite simply, rude. Americans are supposed to be friendly! Saying “the disabled” or other such phrases is therefore borderline unpatriotic!)

The stories of part two are archetypal (man vs. nature and the two possible outcomes) but altered slightly when applied to people with disabilities: the boot strap myth for bodies. Try hard enough and you’ll just get over it somehow, or else suffer the fate of little Tim, preening away in the corner. Certainly fantastic physical feats are interesting for their own sake, but what does it mean that we applaud people with disabilities (or think we understand them) only when they are extraordinary. What about the woman with a disability who works as a lobbyist and has an amazing singing voice? What about the man who drives his kid to school every morning in his specially appointed van? Those stories are not as dramatic, of course, but they’re a lot more common, and, I think, more interesting, because they connect more deeply with most people's lived experiences. No wonder people are terrified of becoming disabled. Who can imagine living at either end of that spectrum for the rest of their lives, or crossing back and forth between those two corners of the ring?

We need a new discourse to understand disability. We need some imaginative drift, some metaphorical shock (and Paul describes it like that, like a physical shock for the brain, and this explains why good poetry is so hard to write) that will disrupt us into new understanding and reveal different meanings, unveil new ways of experiencing the world and the people in it. We must learn to visualize people’s experiences in a new and radical way. We are in serious need of some new perception about the relationship between people and their bodies and the world. New narratives, please.

And that’s why language is important. That’s why “the disabled” is an extraordinarily stupid term (as are other terms like “differently abled” and “specially embodied,” which feel condescending), and why the real lives of people with disabilities fall between the two polarizing narratives we’ve been given to understand the experience of disability, why we’re all afraid to be a part of this group (and we all will be, eventually).

That said, I don’t have a new term to offer (“handicapped” won’t work either; that is way too passé and means, literally, “cap in hand,” as if all disabled people are beggars). I don’t have a solution, but the stakes have changed for me now. My son is disabled and he will not live long and I love him. And so I feel this desire to transcend all of these terms so that people can meet him (and one another) at the level of lived experience, trusting that we can live inside it without having to offer an explanation that is anything other than authentic. We need new words and a new language and it can only be created through discourse, which can only happen between people. Enter art in its purest form: mucking up meaning. Disrupting our worldview. Redescribing story. I must find these new pathways for Ronan.

Years ago I was a counselor at an Easter Seals camp in Colorado. (Again, I was very proud to be a counselor and not a camper, silly me), and I remember so well watching one of the campers (she was about ten or eleven) sit up on a horse for the first time. I can’t remember her specific disability (I think it was spina bifida), but I do remember there were supports on the horse’s saddle, and that she was so excited that she had been unable to eat breakfast. When she was situated the horse trainer and I stepped away. She didn’t move. She stared into the distance, completely still.

“You can tell her to go and she will, or I can pat her,” said the trainer, making a move toward the horse.

“No!” the girl shouted. “Don’t!” The horse neighed a bit and stomped a hoof lightly but stayed where he was. “I want to stay just like this. I want to be this. I want to be right here. I am the horse.” We looked at her. “I’ll move when I want to," she told us.

And so she sat. For about twenty minutes. Each kid was only given thirty minutes, and I was getting worried that she’d regret not having gone somewhere. Eventually she did take the horse on a slow trot around the corral, just one loop, and she was perfectly happy with her experience. She refused to let anyone else make that leap from experience to meaning on her behalf. She was right to be suspicious of our motives. Today I thank her for reminding me that new, authentic narratives, real stories, are possible to create, to recognize, to share.

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Comments

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I read your post with great interest. Your writing is compelling, as is your perspective.

I just spent a week away from home looking after my 10-year old "special needs" niece, who was born with multiple disabilities, and who, like your son, is expected to have a shortened life span. My niece is part of a special needs cheer group that provides a number of social benefits and learning experiences for her. I attended two of her competitions this past week. At one, where other special needs groups participated, the her group was treated like any other group. At the second event, the event host asked the entire crowd to rise to their feet and applaud the special group that was about to perform their routine, and it bothered me. After reading your post, I understand why.

My niece attends that Easter Seals camp in Colorado for one week each summer. I very much appreciated your observations about the little girl on the horse, who defined her own experience, rather than letting others define it for her. That's a powerful message, and a way of being in the world that we can hope that all children have the opportunity to learn.
Your writing leaves me speechless.
♥R
I wonder if part of the solution might lie in a simple refusal to generalize when it is unnecessary? There are times when mentioning that one has arthritis, or one leg, or ADHD is perfectly relevant, but most of the time is isn't - like mentioning someone's race is a conversation that is not about skin tone, prejudice or politics. But there are times when we need to be lumped together, like when describing the attendees of the summer camp you mentioned. In Sweden they speak of having physical or neurological "obstacles"(hinder), which I think is a little less condescending than being "disabled".
My son, who has moderate-to-severe autism can most definitely be considered disabled but at first glance does not look it. I often wonder if he had more outward signs of disability (wheelchair, cane, etc) would it be "easier" for me out in public. Then, I feel so horrible for even entertaining that thought. There are so many varied forms of disability out there that it is laughable to lump all human beings into a certain category or narrative. The amputee that wins a race, the autistic kid with the fantastic talent, etc. If someone's life story doesn't fit neatly into one of these accepted narratives, people become uncomfortable, or in my case, suspicious. I myself was guilty of this before I became a mother to a disabled child. Wonderful piece!
We do need a new discourse to understand disability. I hadn't really thought about the way language is used around this issue. Thanks for your thoughtful piece!
I wish I had some ideas about talking about disability and the stigma associated with it. There are so many ways that everyone is both "able" and "disabled." You bring perspective to the question, and to our still broken health care system. I too fight for my daughter & myself to have insurance coverage in spite of depression. I thank you for your excellent writing.
Thank you. I have brain damage from a tumor and have always felt odd about the resulting behavior of my right side - disabled, yes or no? Your words are helping me realize the answer to that question is to let go of it.