Month: February 2015

In his canonical book Stigma: Notes on the Management of Spoiled Identity, Erving Goffman observed that the disabled are managed by the non-disabled with “phantom acceptance”–a dance of sorts where the disabled must replicate with every gesture the provisional codes of acceptance that “stigma management” has offered. Goffman puts it elegantly:

 

“The stigmatized individual is asked to act so as to imply neither that his burden is heavy nor that bearing it has made him different from us; at the same time he must keep himself at that remove from us which assures our painlessly being able to confirm this belief about him. Put differently, he is advised to reciprocate naturally with an acceptance of himself and us, an acceptance of him that we have not quite extended to him in the first place. A PHANTOM ACCEPTANCE is thus allowed to provide the base for a PHANTOM NORMALCY.”

 

People of color, LGBT folks, women, all those who hail from historically marginalized positions know this dance and fully understand their precarious position where phantom acceptance and phantom normalcy are concerned. The unspoken but implicit rules of discourse are famous: your phantom acceptance is conditional. Speak too passionately and you're “uppity”; a bitch; or a “bad cripple”. Contrarian opinions will disrupt the expectations that go with false acceptance. The burden borne by the uppity cripple is two-fold: (s)he must perform or conduct “identity management” at all costs; (s)he must negotiate the limits of the false acceptance that's been extended to her. But above all else (s)he must never raise her voice.

 

I've had a career teaching at 4 universities and have worked in the non-profit world as well. I've watched the disabled struggle with phantom acceptance and identity management in hundreds of settings. Over time I've come to believe the single biggest reason the disabled are unemployed at staggering levels has everything to do with the hoary circumstances Goffman outlined over fifty years ago. It seems some books just don't wear out.

 

Not long ago someone in a committee meeting called me a bully. I was speaking passionately but without vulgarity, ad hominem attacks, or meanness. But there it was: I'd stepped over the phantom acceptance identity management line–the invisible but ever present stigma trip wire of Goffmanism. I was officially uppity.

 

I was badly bullied as a child. I've written about it in two of my memoirs. I was a blind kid attending public school long before the Americans with Disabilities Act. I was beaten on the playground, taunted in the hallways, ostracized by both teachers and children. I've never forgotten what it felt like to be red faced and weeping alone in the woods. Someone who calls me a bully is of course outing my phantom acceptance but also demonstrates a failure of empathy. As a disabled person who teaches I always feel the implicit connection with my colleagues and students who negotiate daily around the Goffman wire. Bully is a synonym for uppity, which means something more than arrogance–in its original usage it meant a woman who presumed to climb beyond her proper station. I'm no bully. But just try saying it out loud under the great phantom circus tent.

If you have been watching NBC’s Today Show recently you know about “Wrangler” the guide dog puppy from Guiding Eyes for the Blind. In an unprecedented TV event, the cast and crew of  Today is raising a puppy who may one day become a guide dog for a blind person. I have more than passing interest in this because I’m a graduate of Guiding Eyes and I’ve traveled around the world with three remarkable yellow Labrador Retrievers. I’m alive today because of the intelligence and loyalty of my guides. Watching Today I’m heartened by the cast and crew’s enthusiasm for the guide dog movement and I’m reminded that it really does take a village to breed, raise, and train every single service dog.

The village is filled with astonishing people. Not everyone can deeply love a puppy for over a year and then give it back to the guide dog school. Not everyone can martial the discipline to train a puppy to have manners and fully understand a range of commands. And while puppy raisers don’t actually train future guide dogs in the intricacies of traffic work, they do prepare the pups by exposing them to the hustle and bustle of the world, giving them a foundation of confidence. When the puppies return to Guiding Eyes they’re ready to learn. And ready to rely on their own assurance and motivation.

When I travel with my guide people often ask me questions. Though many folks know guide dogs exist, few have ever seen one in person. This is because blindness is a low incidence disability. In truth there aren’t many guide dog users in the US. We’re a minority’s minority. There are roughly 12 guide dog schools in America and approximately 15,000 guide dog teams. Though the sight of a blind person and guide dog walking confidently in traffic is inspiring and holds a place in the public’s imagination, there aren’t as many of us as you’d think. Given that working with a professionally trained dog gives blind people an edge in traffic, and owing to the fact guide dogs are offered free of charge (despite the hefty cost of their training) I think the partnership between Guiding Eyes and Today is truly significant. More people, blind and otherwise need to know about the guide dog movement.

As I say, people ask me questions. “How does your dog know when to cross the street?” Guide dogs don’t make that decision, their blind handler does. What a guide dog does is remarkable: she evaluates the wisdom of the command. If it’s not safe to cross she won’t budge. This is called “intelligent disobedience” and it represents the marriage of a dog’s instinct for self-preservation with sophisticated training. It takes a dog with oodles of confidence to make life or death decisions.

“When your dog gets old what happens to it?” (This is a frequent question and it can happen anywhere—in an airport, riding in a taxi.) You can keep your guide dog as a family pet when it grows old. If your circumstances don’t allow for this, the guide dog school has a list of loyal puppy raisers and volunteers who will lovingly look after a retired guide. They are doted on.

“Is your dog trained to protect you?” (People think blindness means you’re especially vulnerable. This question has more to do with imaginary fear than reality.) No. Guide dogs aren’t trained to attack people. On the other hand, once, about ten years ago, while I was waiting for a bus rather late at night, a drunk lunged toward me making exaggerated Frankenstein noises. My guide dog at the time was “Vidal” and he stood up on his hind legs and let out a ferocious bark.

Vidal wasn’t having any of that nonsense. The drunk shrank into himself. And just then the bus pulled up. The driver had seen it all. “Give that dog a steak when you get home!” he said.

I became a guide dog convert long ago. I believe a confident and tireless canine companion offers advantages to navigating with a white cane. I think more blind and visually impaired people need to know about the services offered free of charge by America’s best guide dog schools. I’m heartened to see NBC and Guiding Eyes team up to share a guide dog puppy’s story. Go get ‘em Wrangler!

 

 

 

 

My dog follows me into sleep. I dreamt of her while in Venice. 

By day we floated on the Grand Canal, at night I swam with her in a New England lake. 

Animals are the key to all the secrets of the subconscious. 

Corky followed me up a slope of raspberry bushes. 

Beautiful flowering trees gleamed just out of reach. 

This is how it is to be happily attached to your guide dog. 

We rode a train to Verona. She looked out of the window as dogs do. 

I thought, “let reality weigh itself”—with Corky I am lighter. 

This is how it is. 

I was breathing lightly; the April light of northern Italy falling on my eyelashes. 

“How did you get that way?”
“How many fingers am I holding up?”
“How do you dress yourself?”
“How do you find the toilet?”
“Can you see what I look like?”
“Who selects your clothes?”
“How do you know people aren’t cheating you?”
“How do you watch movies?”
“Can I pray for you?”
“Do you know my friend X who is also blind?”
“How do you know where you’re going?”
“How does your dog know when to cross the street?”
“Do you have a girlfriend, boyfriend, etc.?”
“Do you really have a job?!!”
“Are you a veteran?”
“Were you always like this?”

Rinse and repeat. 

“How did you get that way?”
“How many fingers am I holding up?”
“How do you dress yourself?”
“How do you find the toilet?”
“Can you see what I look like?”
“Who selects your clothes?”
“How do you know people aren’t cheating you?”
“How do you watch movies?”
“Can I pray for you?”
“Do you know my friend X who is also blind?”
“How do you know where you’re going?”
“How does your dog know when to cross the street?”
“Do you have a girlfriend, boyfriend, etc.?”
“Do you really have a job?!!”
“Are you a veteran?”
“Were you always like this?”

Rinse and repeat. 

In the blink of an eye it will be the 25th anniversary of the Americans with Disabilities Act. Within the borders of the USA the ADA has been praised, excoriated, upheld in courts, crushed in courts, adopted as a model for future design, ignored and labeled as an “unfunded mandate”. In short, like many other political and legal developments in American history, the ADA is as tall and curvy as Mt. Rushmore. You can salute it; hurl obscenities at it; ignore it; or argue about the wisdom of carving it in the first place. Many folks both within and outside the “disability community” have done all these things, often sequentially.

The ADA is a human document. It’s the horse designed by committee. It’s wildly imperfect. It grants churches immunity. When you see a church, mosque, temple, or synagogue with a wheelchair ramp you’re looking at a house of worship that has done what’s right despite the embarrassing exception. It’s likely of course that someone in the “flock” has a disability and maybe, just maybe, has deep pockets. But as I say, the ADA is imperfect and it’s critics will remind you of it at every possible juncture. The biggest criticism is that the disabled are not any better off when it comes to employment than they were before the act. Statistics about disability are notoriously hard to gather but the static unemployment figures seem conclusive: between 60 and 80% of the disabled (who are of working age) remain jobless though the ADA has been the law of the land for a quarter of a century. “You can’t legislate morality” goes the refrain. True enough. But you can give morality a fighting chance: remove barriers, make accommodations “reasonable” and encourage attitudinal changes. These are the triumphs of the ADA. People with disabilities may not be fully in the village square but the expectation, the presumption they should be is understood.

I say “the presumption” is understood. Disabled people might come here one day. I remember checking into a motel in Santa Cruz, CA some three or four years after the ADA was passed. I had my guide dog with me. The manager was very excited to see me. He had a telephone relay device for the deaf and was eager to bring it to my room. I was so touched by his enthusiasm I didn’t venture to explain why it wouldn’t be helpful for me. I thanked him profusely. I put it in the closet. It was the presumption that mattered. The managed had known a disabled person would appear one day.
And there I was. As I say, it’s this presupposition cripples will appear at your door that is the ADA’s signature benefit. One may quibble about the value of this but I won’t. I’ve lived much of my life without civil rights and I know the difference. When I was in graudate school at the University of Iowa back in the early 1980’s a professor of literature told me I couldn’t be in his class if I was blind. Today’s professors may be equally ableist but in general terms they won’t come right out and tell you to go away. They will evince a moue of disgust. They’ll tell you what an inconvenience you are. But the chances are good they won’t get away with it. I won’t say it’s impossible. At too many colleges and universities attitudinal barriers and structural barriers remain in place and while the Department of Justice is handing out hefty fines to many insitutions of higher education, transformations within the ivory tower are painfully slow.

The Los Angeles County Jail is the largest psychiatric hospital in the US. 25 years after the ADA we’ve achieved a great national disgrace. People with psychiatric conditions or autism or learning disabilities are frequently abused by police.
Rehabilitation programs for people who’ve suffered spinal cord injuries have been scaled back; wounded veterans don’t get the resources they often need; budget cuts imperil orientation and mobility services for the blind and visually impaired; public transportation is reduced; wheel chair users see their chairs destroyed by airlines; service animal users are told they can’t enter the shopping mall; the disabled with good resumes are told “that job was just filled”. It has been a quarter of a century since the ADA and in all too many cases things are as bad as ever.

Conservatives say getting rid of Social Security Disability payments would impel the disabled into the work force. To this I always say: “try showing up with a white cane and sunglasses and see how quickly the Widget Company will hire you.” And to this I say: “do you want the blind begging in the streets?” Some may want this. Most I presume do not. Embarrassment isn’t completely passe in the United States. Not yet.

The biggest single obstacle to employment for the disabled remains the attitudinal barrier. Even though the Social Securithy Administration made it possible some fifteen years ago for the disabled to keep benefits while transitioning to work the jobs haven’t appeared. Could it be that neo-liberalism will finally command all citizens, disabled or not, to become sole-proprietors—entrepreneurs, consultants, purveyors of cottage industry commodities? Perhaps. But if we were to honor the ADA at 25 a push toward creating material tax incentives and accommodation resources for buisnesses that hire the disabled would be a signature accomplishment. 

You can’t legislate morality but you can make it profitable. 
  

Spring is under the snow, improbable as lizards and flowers here in the north. Spring with its tonic sub-categories, the green that appears like smoke in the branches, the trunks of trees silver as knives in a pawnshop, even the breath is renewed, a reconciliation with the air itself. I think this year I will stay silent long into May. Enter the garden like an old drunken captain who long ago was expelled from the sphere of his senses but who listens anyway for the stray music.  

It has always been my chief fear I’ll be struck by an automobile. Each of us has a signature fear. Franklin D. Roosevelt was afraid he’d be consumed in a house fire, his terror all the more ghastly because of paralysis. Disability dread isn’t casual like the proverbial spider in the bathtub. It’s substantial and inherently realistic and one learns to carry it as some carry memories of bad divorces or the traumas of violence. 

This morning I read of the sudden death of Ben Woolf a young television actor who recently became well known for his role on the hit series “American Horror Story”   Ben Woolf was born with pituitary dwarfism and accordingly was a man of short stature. On American Horror Story he played goulish figures—“freaks” in the manner of Todd Browning, and I’ll withold my opinion about whether he was exploited or not but merely quote from today’s New York Times:

Mr. Woolf, diagnosed with pituitary dwarfism when he was a child, became known for his work on the FX series “American Horror Story,” an Emmy-nominated show that features an ensemble cast. It has new characters each season and a new story line and settings that have included a haunted house, a 1960s mental hospital plagued by demons and extraterrestrials, a coven of witches, and a 1950s carnival “freak show.”

In the first season Mr. Woolf played the Infantata, the murderous ghost of a baby-turned-Frankenstein monster by his grieving parents, and in the recently concluded fourth season he played Meep, a sideshow performer with a one word vocabulary and a gift for biting the heads off live animals.

Standing just over four feet Ben Woolf would be hard to see in a busy traffic situation and that’s the tragic story as he was clipped by a vehical’s side mirror while crossing the street and knocked unconscious. He died of a stroke. 

As a guide dog user I’m always, and I mean entirely thinking about the street ahead, the one I must cross. I think about a hundred things. The drivers who are naturally incompetent; those who are medicated with over the counter drugs—drugs that were formerly available only by prescription, and which, when taken without supervision, can make a person foggy. Don’t forget the drivers who are texting; who fumble for dropped lipstick; talk on their phones; spill coffee in their laps. Then there are the habitual scofflaws—the traffic light runners, the acceloristas. Blind walking requires (in the words of Lou Reed) a busload of faith to get by. In other words, to overcome my fear and navigate the day, I must imagine people are competent. It’s like the adumbrations of faith one must martial when flying on an airplane. You tell yourself the pilot is competent, the mechanics are heroic, perhaps and likely against contrary evidence. You need to get someplace. You certainly can’t stay home.

Ben Woolf died in traffic. The driver who struck him stopped. It was a genuine accident. And I’m haunted by “Infantata” the ghost of the dread streets.    

It has always been my chief fear I’ll be struck by an automobile. Each of us has a signature fear. Franklin D. Roosevelt was afraid he’d be consumed in a house fire, his terror all the more ghastly because of paralysis. Disability dread isn’t casual like the proverbial spider in the bathtub. It’s substantial and inherently realistic and one learns to carry it as some carry memories of bad divorces or the traumas of violence. 

This morning I read of the sudden death of Ben Woolf a young television actor who recently became well known for his role on the hit series “American Horror Story”   Ben Woolf was born with pituitary dwarfism and accordingly was a man of short stature. On American Horror Story he played goulish figures—“freaks” in the manner of Todd Browning, and I’ll withold my opinion about whether he was exploited or not but merely quote from today’s New York Times:

Mr. Woolf, diagnosed with pituitary dwarfism when he was a child, became known for his work on the FX series “American Horror Story,” an Emmy-nominated show that features an ensemble cast. It has new characters each season and a new story line and settings that have included a haunted house, a 1960s mental hospital plagued by demons and extraterrestrials, a coven of witches, and a 1950s carnival “freak show.”

In the first season Mr. Woolf played the Infantata, the murderous ghost of a baby-turned-Frankenstein monster by his grieving parents, and in the recently concluded fourth season he played Meep, a sideshow performer with a one word vocabulary and a gift for biting the heads off live animals.

Standing just over four feet Ben Woolf would be hard to see in a busy traffic situation and that’s the trafic story as he was clipped by a vehical’s side mirror while crossing the street and knocked unconscious. He died of a stroke. 

As a guide dog user I’m always, and I mean entirely thinking about the street ahead, the one I must cross. I think about a hundred things. The drivers who are naturally incompetent; those who are medicated with over the counter drugs—drugs that were formerly available only by prescription, and which, when taken without supervision, can make a person foggy. Don’t forget the drivers who are texting; who fumble for dropped lipstick; talk on their phones; spill coffee in their laps. Then there are the habitual scofflaws—the traffic light runners, the acceloristas. Blind walking requires (in the words of Lou Reed) a busload of faith to get by. In other words, to overcome my fear and navigate the day, I must imagine people are competent. It’s like the adumbrations of faith one must martial when flying on an airplane. You tell yourself the pilot is competent, the mechanics are heroic, perhaps and likely against contrary evidence. You need to get someplace. You certainly can’t stay home.

Ben Woolf died in traffic. The driver who struck him stopped. It was a genuine accident. And I’m haunted by “Infantata” the ghost of the dread streets.    

Readers searching for a brainy gallimaufry (there ought to be a word for this, but trust me, there isn’t) need look no further than the daily blog of Lance Mannion. A passel of brainiacs (there ought to be a word for this, but trust me there isn’t) already knows about LM—his following is considerable. His cerebral readers include Tom Watson, Farran Nehme, James Wolcott, Maud Newton, Melissa McEwan (Shakesville) and many more.

Why should I wish to be Lance Mannion? Well, for one thing, I knew him when he was a graduate student at the University of Iowa’s “Writer’s Workshop” and from the get go I saw I was in the company of a generous and amused mind—a sensibility—for he appeared at my door one day (having answered a bulletin board ad for a reader for a blind guy) with a book under his arm, “The Heart of Midlothian” which he read to me entire, and in the manner of Dickens, which is to say he “did” the voices. Please take the time to think about that. A young man (for Lance was young in those days) who could “do” a dozen Scottish voices without destroying the book is rare. I’ll venture he was the only man in Iowa City who could have done it. 

Of course a gift of that kind would ordinarily mark a man as eccentric and that would be that. (I know “from” eccentric: my maternal grandfather built early automobiles and motorcycles before World War I, then converted his factories to munitions plants and gleefully spent the rest of his life dynamiting rural homesteads in New England.) 
If Lance was eccentric he was neither formidable or vast. It’s not my aim to launch a taxonomy of anomalous personalities (that is “so” last century) only to say Lance was both odd and kind. And “is”. Which is why I believe Mr. Mannion is our contemporary Samuel Pickwick, who as Simon Callow noted, is benevolence personified, decent and determined. Mannion is our American Pickwick: observing our contemporary foibles while rooting for his friends to endure and succeed.

Mannion’s Winkle, Snodgrass, Tupman, and Weller are harder to spot than Dickens’ originals because America is santized for your protection and mediated beyond easy measure. Whch is why he offers us “Mannionville”—a place more muscular and analytical than Lake Wobegone, for the Mannionville women are learned, its men don’t care much how they appear (not precisely) and one imagines more than a few of the residents have read Mutual Aid. Certainly the people of Mannionville have read Babbitt (which they liked though not without a moue of disgust) and An American Tragedy (which they didn’t like but agreed was largely accurate). The Mannionville folks don’t like Ford Madox Ford  who was never much interested in being accurate about people. They do like Mencken (only provisionally)  They love Huck Finn. They care a good deal about Roger Ebert.         
     
The Mannionville-istas can tell you why Rudy Giuliani  is a cynic. They can also convince you a second rate Disney animated flick is worth watching (Pickwick would have liked it) and why America desperately needs to read fiction (hint: a GOP legislator in Montana wishes to ban Yoga pants.) 

There’s a hint of George Orwell in Mannion’s wanderings. Orwell didn’t merely fear our fears will ruin us—he feared the falsified nature of fear, its easy plasticity, the way fear itself can be the distraction. All advertising is built from fear—or “agitation” if you like—your skin is loose; you’re bladder is insurrectionary; you drink the wrong brand of soft drink; or worse—you’re driving a proletarian automobile. Orwell understood the entertainment industry of fear all too well. Lately there’s been a ubiquitous commercial for a British luxury car which suggests that you also can be a James Bond-esque villain if you fork over $75,000 for the accoutrement. People are indeed controlled by inflicting pain, and imagining that you’re doing the inflicting is one of the centrifugal bumble puppies of falsified fear. So my money’s still on Orwell. 

I think Lance Mannion would agree with this. 

The reason I wish I could be Mannion has to do with his upright and decent lapsed Catholic’s faith in his neighbors. I like that. I don’t have nearly enough of it. Faith in the villagers goes a long way to dispeling fear. There are no vitamins for this. So while my money’s still on Orwell, its also on the people of Mannionville.