Disability and Narrative, or, I'm Only Partly Practical

By Stephen Kuusisto 

 

“It’s a naked child against a hungry wolf;

It’s playing bowls upon a splitting wreck;

It’s walking on a string across a gulf;

With millstones fore-and-aft about your neck;

But the thing is daily done by many and many a one;

And we fall, face forward, fighting, on the deck.”

 

–John Davidson “Thirty Bob a Week”

 

 

I’ve been thinking about the tellers of stories–you know, stories about cripples or your granny, about hungry children who live in the middle of a prosperous suburb. Or the “illegal immigrants” who are swept into America’s corporate jails where they’re raped and the guards, paid minimum wage, laugh until they piss their pants. I’ve been thinking about representation and misrepresentation for over forty years, ever since I read Foucault in college. By the time I was twenty I saw that literature is often no better than the newspapers, that much of it is fit only for wrapping fish and even the best of it slings egregious notions of the world of the weak, whether we’re talking of Melville or Cormac McCarthy. I saw early that readers and writers and yes, professors, are often without sufficient cultural integrity to see the wounding that happens when the voiceless are misrepresented in books and films. This is a disability perspective, most certainly, but it’s more than a single issue critique–high modernism took literature into the academy where it prospered in a rarefied and segregated world. Post-modernism broke literature into complexities of comparison and all the cathected subjectivism you can imagine but it still left the cripples, the wounded, and the orphans largely out of the picture. This is because broken bodies do not make for quick agreement or theorizing unless they can be presented as metaphors of abjection or heroic triumph and this leads me back to the question about who is telling the story. 

 

One of the most troubling narratives of disability–if not THE most troubling–is what disability studies folks call “the overcoming” story. You know how it works: a blind man climbs a bad ass mountain and experiences an overwhelming sensation that he can conquer anything. A man who stutters learns to recite Shakespeare, and accordingly, by extension, the narrator implies that you can too! And chanting choristers tell us that “triumph” is like a piano appassionato and yes, all overcomings are glamorous. There is always a broken pearl necklace of falling adjectives–”inspiring”; “poignant”; “deeply moving” etc.. 

 

Personally I do not think human beings need motivational narratives: in fact I believe they can be destructive since they propose two untruths about life. The first uses analogy, proposing that the mastery of something–an ailment for instance, is like climbing a mountain–and by extension, a man living with blindness requires superhuman determination. Forget the mountain: in the real world most people need emotional intelligence and candor more than tinkling heroism. Life is not heroic, it’s about truthful discourse. The second is that all overcoming narratives are patently false–not just suggestively false. If you’re blind you can learn to be an exceptional person who happens to be blind. You cannot, by definition, be heroically blind, anymore than you can be heroically bland or inspiringly left handed. What you can be is honest, competent, kind, and have a healthy suspicion of glib inspirational nonsense. Not long ago I saw a TV news story that I really liked. It was about a kid with cerebral palsy who ran in a local race alongside his able bodied classmates. I loved that his friends cheered him on and that he was part of a team. But the kid didn’t have to be a hero. In the televised story he was just the boy next door with CP. His friends, when interviewed kept saying, “He’s just Matty.”  Heroism is a trap. The hero always has to become his admirers. 

 

 

**

 

Beware your admirers. Or as Thoreau said: “Beware of all enterprises that require new clothes.”

Narratives are essentially garments and we should be properly suspicious of our threads when pressured to adopt the right look. “Clothes make the man,” said Mark Twain, who added: “Naked people have little or no influence on society.” (It’s a pity Twain didn’t live to see Mahatma Gandhi’s visit to London in 1931). But let’s say Twain was right. Success requires the proper costume–even for Gandhi who understood the matter better than anyone. Let’s say the prevailing, acceptable costume for the cripple is a tee shirt that reads: “I Learned Not to Be Disabled, Now I Inspire Others at the Country Club” (The tee shirt also has Braille and sign language on it.) 

 

I used to work at one of the premier guide dog schools in the US. Every day I wore a jacket and tie. In part this was necessary. I often spoke at Rotary clubs and other civic organizations. Wearing a serviceable Sears and Roebuck suit was good on the rubber chicken circuit. But then an insidious force got ahold of me. I started imagining I was superior to the blind people who came each month to train with their new guide dogs–folks who were often terribly poor, who dressed badly, who were, in some instances, morbidly obese. 

 

Occasionally vanity is about survival but most often it won’t take you very far. Poetry is good on this subject. There I was, working at the guide dog school, trying to convince the public that blind people are competent and professional. On its face there’s not much wrong with this impulse.  There are many uniforms in life.  Garments are rhetoric. We get very few opportunities to make an impression on the people who may hold the keys to our fate. But you see my mistake was to imagine–to really start believing–that I was successful because I wasn’t like those other   

sad blind folk. I was in love with two falsehoods: I was a better guide dog handler than other people; I was more presentable. My garments were very clean. My narrative was getting dangerous both for its mendaciousness and its projective falsehood. What was happening to me? 

 

**

 

 

The dominant rehabilitation narrative assumes that people with disabilities are flawed.  Physically or mentally impaired people are slates. The rehab specialist must write a new story on the broken man or woman. In the rehab narrative the subject begins as newly disabled. Disability is terrifying. The disabled person believes his or her life to be over. There’s no place in the world anymore.  

 

Enter the “A Team”–doctors, physical therapists, orientation and mobility instructors, the special equipment people–who come and give the impaired subject new ways to live. If we leave the story at this point, we’ve essentially adopted a utilitarian position: able bodied people reintroduce the cripple into their drawing rooms. There’s a whiff of Eliza Doolittle at the end. And at the level of archetypal psychology, the cripple has survived a heroic descent into the underworld and has now returned with the help of his shamans. 

 

This is an exceedingly soft story and its garment has many threads. The “signature” thread is sentiment. One of the guide dog schools in the US offers on its website the slogan: “Open your hearts for closed eyes”–who needs to say more? 

 

Another strand says every disabled person is alone until he’s rehabbed. The aloneness is existential, never cultural. Left to his devices, the poor cripple has the wrong spirit. The rehab narrative never asks why the poor bugger was alone in the first place. The man who sews this coat knows precisely which threads he can safely pull.

 

On the back of the coat it says: “Some day there will be a cure for me.” 

 

On the front it says: “Look how inspiring I am in the meantime.”

 

Hidden on the label inside it says: “Give to Jerry’s kids.”

 

**

 

In the academy they like to talk about the “dominant culture”–a quaint term left over from the sixties. Most accomplished people with disabilities know there is no dominant culture, there are simply multiple competing narratives about your body. Some of the narratives are ageist, others racist, a few are entirely dressed in misogyny. Others will turn you into cannon fodder. Ableism, the belief that the world should be reserved for “normal” bodies is dangerous to all. And this is the real and lasting symbolic problem for those who aren’t normal: we represent a cultural void, the end of utility, a terrible and lasting reduction of human possibility. If you don’t have a disability this should scare the living shit out of you–your usefulness is provisional and entirely dependent on luck. 

    

**

 

Being out in public as a person with disability–and by “out” I mean “out”–means that you are not your crutch or your wheelchair, not your guide dog or white cane, you’re not your breathing tube or oxygen tank. These are parts of a life the way a Volkswagen is part of a life. No one says of the man driving a Jetta–”Well, there he is, a man entirely reduced by his VW.”

 

It matters what people with disabilities say about themselves. It also matters what we think about the narratives of cure and rehabilitation. Romanticized these become dreadful reconciliations that can cloud judgement. I’m not better than you. I’m not half-made. I’m no longer compensating for a thing. I wear what I want. My crippled garment is part Gandhi, part Beatles “Nehru jacket” and covered with guide dog hair.