Spinster
English 2700
December 10, 2014
Disability, Narrative, and Identity
In 1999 I had my first diagnosed seizure in twelve years. My friends and family were supportive, but as it became apparent that I would not be cured, I grew depressed and despondent. These were the early years of my adulthood. My friends were moving away, going to college, getting married, starting careers, and I was lost. The traditional narratives surrounding people with disabilities left me with little hope for the future. I took classes off and on, usually dropping out halfway through the term. I was certain I could not complete a semester, let alone a degree. I couldn’t be the intelligent and driven person I’d been before. I couldn’t just tick goals off my list like I’d planned. That wasn’t what disabled people do. That wasn’t what they are.
I’d seen the way people with disabilities were treated by the community. They were in nursing homes. At Christmastime we’d go visit them for church with condescending smiles glued to our faces. We’d hear sermons about “the disabled” being God’s special children here to teach and guide for they already had the holiness to enter heaven. They were incapable of sin.
And at age twenty five, I was in disability housing (very much not a nursing home, though the locals and students insisted on calling it that). Students from BYUI knocked on my door and asked if they could adopt me as a grandmother for their “Adopt a Grandparent” program. I was the recipient of the condescending smiles and uncomfortable glances. I was the service project. I hated it.
I may have been God’s special child, but I would have done anything to be normal. I hated depending on my parents and friends for rides to the grocery store. I hated not being able to make plans because I didn’t know if I’d have transportation or if I’d be well. I hated not being able to work. I hated the medication that made me sleepy or angry, that made me gain or lose weight, that drilled wide holes in my memory, that made my hands shake so constantly I felt like I couldn’t do anything I loved: drawing or writing or cooking.
I felt betrayed by my body, and I felt like I had betrayed my family, my teachers, and my community by becoming this thing, this burden. I was full of anger at the world and at myself. I felt completely alone. I didn’t know how to cheer myself into the inspiring disabled person I felt I was supposed to be—the person who loves life and never complains and adjusts perfectly in spite of all the circumstances. I felt guilty. I knew I was putting my family through hell not just by existing while disabled, but by existing with a bad attitude while disabled. I tortured myself with self-doubt. Things couldn’t be as bad as I thought they were. I could be happy and disabled. Mine was a character flaw, not a physical disability.
I sometimes look back at this period and wonder why I believed all of these things about people with disabilities and specifically about myself. As I’ve researched disability politics, I’ve begun to understand. I’d fallen for the narratives about people with disabilities—narratives that are woven into literature, television and movie entertainment, and even the news media. I believed that because I was disabled, I was no longer the person I’d grown up to be. My identity was suddenly caught in this vague idea of what I was seen as.
The most dangerous of these narratives and probably the most difficult for me to overcome is that people with disabilities are not humans of their own right. Through media and culture the disabled body has taken on a significance unrelated to the corporeality and even reality of that body. In literature, for example, the disabled body (for roles or personifications of those with disabilities in the literary canon cannot rightly be called characters) is not the body of a human. The body is a metaphor or theme. Rosemarie Thomson states in Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature:
The disparity between ‘disabled’ as an attributed, decontextualizing identity and the perceptions and experiences of real people living with disabilities suggests that this figure of otherness emerges from positioning, interpreting, and conferring meaning upon bodies. . . . Literary conventions even further mediate experience that the wider cultural matrix, including literature itself, has already informed. If we accept the convention that fiction has some mimetic relation to life, we grant it power to further shape our perceptions of the world, especially regarding situations about which we have little direct knowledge. Because disability is so strongly stigmatized and is countered by so few mitigating narratives, the literary traffic in metaphors often misrepresents or flattens the experience real people have of their own or others’ disabilities (10).
I was having an identity crisis. I was disabled, but I didn’t fit into any of the disability narratives I’d learned. I wasn’t a saccharine and lovable Tiny Tim. I wasn’t an obsessed and haunted Captain Ahab. I wasn’t a tragic and misunderstood Quasimodo. I wanted my story to be as predictable and definite as any of these. It wasn’t. I was trying to live as a metaphor, but acceptable metaphors must be simple. I was complex. I was human. I was a miserable metaphor.
The disabled body is not only dehumanized in literature, though. The same unwritten rules that govern the bodies of non-disabled folk govern ours—perhaps even more strictly. Like queer and non-white bodies, disabled bodies are considered deviant. We wander from the norm. In earlier decades and centuries, people with disabilities paid for this wandering by participating in freak shows or by being subjected to invasive portraiture. These rituals allowed normative society a glance at the exotic and strange and the reassurance that they were indeed normal, natural, healthy, and human (Riley, 2, 9-11).
Superficially, things have changed for people with disabilities. If we look more deeply, considering social and cultural contexts of disability, things are very much the same. Documentary entertainment television focuses largely on people with disabilities. A&E shows Hoarders, Obsessed, and Intervention often focus on people with emotional disabilities. ("All Television Shows - A&E.") Intervention has an especially bad reputation among the disability community because episodes have portrayed people with legitimate physical disabilities as delusional and drug-seeking. One episode featured Linda, a woman with Ehlers-Danlos syndrome (a connective tissue disorder that can affect the heart, joints, and skin elasticity) who used prescribed fentanyl lollipops to relieve the pain of joint dislocations and sprains. Selective editing showed Linda as irrational and implied that Ehlers-Danlos was an imaginary illness ("Episode 100: Linda").
Despite their inflammatory nature, these types of television shows have a wide audience. For many people, they’re considered a break from the real world, trash TV. And of course if the TV is trash, the people in the shows must be even trashier. Programs like these take advantage of people with disabilities, turning their stories into cash while simultaneously making the people in the stories into caricatures and jokes.
Not much better are the fundraising or awareness-raising shows. These shows often feature children with disabilities being either inspirational or pitiful. It’s often a combination of both. They play upon the sympathies of the viewers and allow them to both feel better about their own relatively un-tragic lives and about their morality should they pay attention to the cause being advertised (Riley 13-14).
These are what disability activist and comedian Stella Young calls “Inspiration Porn.” In her June 2014 Ted Talk she says:
You may have seen images like this one: "The only disability in life is a bad attitude." Or this one: "Your excuse is invalid." Indeed. Or this one: "Before you quit, try!" These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."
But what if you are that person? I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.
And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. . . .
I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It's just not going to happen. . . .
Disability doesn't make you exceptional, but questioning what you think you know about it does (Young).
Disability has a narrative in our culture. That much is apparent. The narrative is a lie. It’s a lie that sometimes comforts non-disabled people, but it also disallows us from knowing each other as completely human. Rejecting the narrative is one of the healthiest thing any of us can do. These pre-set stories and definitions that come with our bodies are silly. We don’t need them. We can create our own. Our stories and definitions are so much more honest and human and strong than any given to us.
When I was in my mid to late twenties and living in disability housing in Idaho, things started to change for me. I was finally living with other people who had disabilities, and I liked them. I loved them fiercely. I loved Allison, who’d been in a car accident and could no longer get the words in her mind to leave her mouth. I loved Jeff, who was severely mentally ill and spent his days at the piano in the lobby providing music for the rest of us. I loved the men and women whose bodies were aging and who accepted it, who invited me to game nights and taught me how to play a wicked game of dominos.
I loved my neighbors. They were not metaphors. Their bodies were not metaphors. They were themselves: intricate and complicated and funny. I didn’t expect them to be anything but themselves. Why did I expect it of myself? Why was I shoving myself into this narrow box of acceptable definitions and attitudes. It was preposterous.
Ironically, when I made the realization that I didn’t have to be an acceptable disabled person, my attitude began to change. I found what most people would call a good attitude. It wasn’t and isn’t the simple, uncomplicated performance of disability people expect. It’s a complex, complete, and chosen happiness. It’s a happiness I fight for every day with humor and activism and introspection. I’m not the supercrip who’s learned to love herself and triumph in spite of her disability. I love myself with my disability and because of my disability. I love the spot of injured tissue in my brain that makes me so beautifully human. It is mine. It deserves love.
Works Cited
"Episode 100: Linda." Intervention Directory. Web. 11 Dec. 2014.
Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture
and Literature. New York: Columbia UP, 1997. Print.
Riley, Charles A. Disability and the Media: Prescriptions for Change. Hanover, NH: U of New
England, 2005. Print.
Young, Stella. "Transcript of "I'm Not Your Inspiration, Thank You Very Much"" Stella Young:
I'm Not Your Inspiration, Thank You Very Much. Web. 11 Dec. 2014.
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