Disability and Ownership

I have a brand new, state of the art, custom made disability. Its sleek and nimble. It has for on the floor and rich Corinthian leather. 

I could tell you much more about it, but then you’d want it. All I can say is I’m sorry its not yours. 

This is what people like Senator Rand Paul think. They honestly believe disability equals goldbricking, that its a kind of scam and that millions of fake disabled people are feeding at the public trough by committing social security fraud.

The widely respected blogger Lance Mannion has written about Rand Paul’s remakrs and I urge my readers to go here to see what he has to say.  

Herman Melville noted Rand Paul’s sort in his novel The Confidence Man when Charlie Noble, the narrator says of a friend in need: 

“Help? to say nothing of the friend, there is something wrong about the man who wants help. There is somewhere a defect, a want, in brief, a need, a crying need, somewhere about that man.”

But I own my disability. No defect. No crying need. Just a desire to be part of the tribe. The tribe must admit its ownership. It owns everybody or its nothing. 

Blogging from Memory

You have to practice reality. When your husband tells you his dreams you have to insert lilacs into his story. “Were there lilacs next to the dancing mannequins?” Try to listen but ask the right questions. Memory too is practice. Wake up. Ask if there were shoes in your dream. In general a good dream has good shoes.

In my dreams the one wearing black rubber boots is me. You have to practice reality. Today in snowy Syracuse, New York, I shall wear my ungainly dream boots and practice memory as I walk through the clotted snow banks. I remember being seven years old and wearing rubber boots that fit over my shoes—I told my mother they were like Egyptian sarcophagi for my Hush Puppies. My mother said, “yes, your feet are the lords of Egypt.” You have to practice.

In the foaming sea of wild flowers that is your dream, look down for your shoes.

I am loved. I am not afraid. There were lilacs. The boots had wings.

Blindness and Blogging

I’ve been a blogger for seven years and while I write about human rights issues broadly, I’m often pushed back to blindness. Pushed back is the right phrase, for as any person with a disability will tell you, there are too many moments when your physical difference is managed poorly by the temporarily abled people you work with or meet. Once I was lifted by three men while I was vacationing in Jamaica. They grabbed me and hoisted me into the air. All of them were well meaning: their goal was to place me securely in a boat. The blind man needs help. We’ll give it to him. I smiled. “Its a cultural thing,” I told myself. Their intentions were good. The trouble is that lots of well meaning actions by non-disabled people are simultaneously demeaning. Those helpful beach guys saw my blindness as something akin to what I’ve come to call “trouble luggage” which is the ultimate pejorative objectification of disability. My friends who travel with wheelchairs know all about this, especially when they’re flying. The airlines view disability (all disability) as trouble luggage. Its rare for a disabled person to have a good day when traveling. You can joke if you like by saying its rare for anyone to have a good day when traveling but trust me, the demeaning and objectifying experiences of disabled passengers are so consistent and so humiliating they far outstrip the lukewarm unhappiness of non-disabled travelers. 

Boarding a plane not long ago with my guide dog by my side, the flight attendant said: “That dog doesn’t have a blue blanket, it can’t come on the plane.”

I’ve flown (quite literally) hundreds of thousands of miles with my guide dogs. I’ve heard lots of oddball things from travel professionals. (Guide dogs are allowed on all public transportation). But this was the first time I’d been hit with the “blue blanket” “trouble luggage” scenario. And those who know me know I’m seldom speechless but standing in the doorway of the airplane I was momentarily flummoxed. 

For one thing, “blue blanket” (for me) brings to mind the famous and hilarious scene in Mel Brooks’ classic comedy film “The Producers” where Gene Wilder, playing the role of Leo Bloom a downtrodden accountant, finds himself swept up in a nefarious and illegal money making scheme in the company of Zero Mostel (playing the role of Max Bialystok, a corrupt Broadway producer). Bloome has a fetish object, a childhood remnant, a blue blanket, which he pulls from his suitcoat pocket and rubs against his face when he feels that Bialystok is bullying him. Bialystok steals the blanket which of course produces comic hysteria from Bloom. “My blanket, my blanket, give me my blanket…” Etc. And so the flight attendant was telling me I couldn’t get on the plane because my dog didn’t have a blue blanket.

“Guide dogs don’t have blue blankets,” I said. “I’m not sure what you’re talking about.”

“Oh no,” she said. “That dog has to have a blue blanket or it cant’ come on the plane.”

“Ah,” I said. “You know when guide dogs are in training as puppies they wear blue blankets, maybe you’re thinking of that?”

“I don’t know,” she said. “But you can’t come on the plane.”

Civil rights veterans know this trick. You just sit down. I sat in the nearest seat. I tucked my dog under my feet. 

“You’ll have to get a supervisor,” I said. 

She stormed off the plane and up the jetway. Civilization was stopped. People with oversized suitcases began piling onto the aircraft without a flight attendant. But I was the supreme piece of trouble luggage.
 
And of course the attendant reappeared and said nothing more to me. Someone told her it was OK. Her silence suggested she’d been dressed down or patronized. That’s the thing: disability “trouble luggage” always leads to abjection and misunderstanding. The commuter airline had not trained its flight attendants. I needed Leo Bloom’s blanket.

I’m fond of pointing out blindness is a low incidence disability. Its highly likely most sighted people (which is to say, most people) won’t come into contact with a blind person. If you’re blind and you travel you must always reflect on your ambassadorship—you’re the official representative of the country of blindness, yes you, standing right there in a jetway with your dog and your backpack loaded with dog food and an iPad. 

So I come back to blindness all the time. The days won’t let me forget it. At a cocktail party a woman says to my wife, who is not blind, “Oh you dress him so well.” Try enjoying your foie gras after that.

“It takes a busload of faith to get by,” Lou Reed said. What will the next moments bring? How will I maintain my equanimity? Everyone has to ask these questions but blindness intensifies their frequency.

“What will he be having?” says the waitress, looking directly at my wife.  

On Being a Pearl

“Our man works in his garret, therefore, in the hope of becoming a pearl.”

Excerpt From: 1694-1778 Voltaire. “Voltaire’s Philosophical Dictionary.” iBooks. https://itunes.apple.com/us/book/voltaires-philosophical-dictionary/id510945575?mt=11

 

I shall be a pearl today and so shall you. The secret to the art rests not in the word “becoming” nor in “hope” but in the imagination’s power of admission. 

One is more of the pearl as she grows older than of the sand. 

The secret is work. 

The metaphor is made manifest by your life in the garret. 

Later today I will read a poem in memory of Steven Taylor, an activist scholar who fought on behalf of people with disabilities. He was in his own way a pearl.

 

Mid Day, Elegy

 

 

—in memoriam, Steven Taylor

 

 

A blackbird sat and called in the pine just west of the house, its voice so clear at first I thought it was water, as if I’d heard the coming rain—

the coming rain but discrete, rain a hundred miles away. 

Though I’m blind I saw the bird—

 

I saw the bird, saw him as I see, merely shape and hue; I knew he was night itself,

at noon, night alive. 

Mid day, a blackbird calling west of the house, 

Shape and hue; blind; saw him, night coming 

 

and saw too how we make work of it

as the day spins forward, unmindful,

our work, night alive, a blackbird calling,

the alert and unmindful day.

 

 

The pearl derives from what we do with the unmindful day. Make your day the garret. 

 

 

 

 

 

 

On Being a Pearl

“Our man works in his garret, therefore, in the hope of becoming a pearl.”

Excerpt From: 1694-1778 Voltaire. “Voltaire’s Philosophical Dictionary.” iBooks. https://itunes.apple.com/us/book/voltaires-philosophical-dictionary/id510945575?mt=11

 

I shall be a pearl today and so shall you. The secret to the art rests not in the word “becoming” nor in “hope” but in the imagination’s power of admission. 

One is more of the pearl as she grows older than of the sand. 

The secret is work. 

The metaphor is made manifest by your life in the garret. 

Later today I will read a poem in memory of Steven Taylor, an activist scholar who fought on behalf of people with disabilities. He was in his own way a pearl.

 

Mid Day, Elegy

 

 

—in memoriam, Steven Taylor

 

 

A blackbird sat and called in the pine just west of the house, its voice so clear at first I thought it was water, as if I’d heard the coming rain—

the coming rain but discrete, rain a hundred miles away. 

Though I’m blind I saw the bird—

 

I saw the bird, saw him as I see, merely shape and hue; I knew he was night itself,

at noon, night alive. 

Mid day, a blackbird calling west of the house, 

Shape and hue; blind; saw him, night coming 

 

and saw too how we make work of it

as the day spins forward, unmindful,

our work, night alive, a blackbird calling,

the alert and unmindful day.

 

 

The pearl derives from what we do with the unmindful day. Make your day the garret. 

 

 

 

 

 

 

I Blog Often About Disability Because

Because I’m like a bird who can’t decide which tree he wants to live on.

Because disability is the whole forest. 

Because my deaf blind friend writes astonishing poems and my two best autist friends are (every day) freeing unspoken vowels from long hidden boxes. 

Because myths of “normal” are a trap—Joe wishes to be normal so he won’t stand out. 

Of course people don’t want to stand out. Its best really to be normal. 
Take it from the boss. Have a nice weekend barbecue. 

Because as a blind kid I dared a boy who was bullying me to ride his bicycle blindfolded. He broke his arm. 

“The English feel schadenfreude even about themselves.” (Martin Amis) Comedy is not concerned with the sufferings of normal people. (Kuusisto)

Because normalcy is getting smaller and my forest is growing. 

Because I believe in a just society. One that takes care of aging children with intellectual disabilities. One that celebrates parents with disabilities. Did I say this correctly? One that celebrates. 

Because, as John Hockenberry says: “In America access is always about architecture and never about human beings.”

I blog often about disability because I believe in human beings. 
 

 

Kudos to Tom Shakespeare

The excellent scholar of disability studies Tom Shakespeare writes over at BBC that disabled achievers should be remembered. Indeed. And he shows that Matisse was a disabled achiever in his later years: 

“Matisse moved from painting to the medium of cut-outs after losing his mobility in surgery to remove cancer in 1941. It was impossible for him to paint freely as he had done before so he turned to the decoupage technique, getting an assistant to pin and re-pin painted shapes to his wall until he was satisfied with the effect, creating undersea creatures, stars, and abstract compositions. It is still possible to produce something beautiful and memorable, and we should have higher expectations of older people with disabilities. Over half a million people visited an exhibition of Matisse’s cut-outs in 2014 at the Tate Modern.”

Tom makes several important points in his blog post. The aging process can be a creative experience; we expect too little from the elderly; classifying people by embodiment is a mistake. The imagination is not beholden to your physical capacities. Or another way to put this is that obstacles or formal constraints in art lead to breakthroughs. 

I have a poem (the title poem from my book “Only Bread, Only Light”  that among other things, makes the case that blindness can be a vehicle of beauty even on an ordinary street:

“Only Bread, Only Light”

At times the blind see light,

And that moment is the Sistine ceiling,

Grace among buildings—no one asks

For it, no one asks.

After all, this is solitude,

Daylight’s finger,

Blake’s angel

Parting willow leaves.

I should know better.

Get with the business

Of walking the lovely, satisfied,

Indifferent weather —

Bread baking

On Arthur Avenue

This first warm day of June.

I stand on the corner

For priceless seconds.
Now everything to me falls shadow.

Excerpt From: Stephen Kuusisto. “Only Bread, Only Light.” iBooks. https://itun.es/us/1017I.l

Tom Shakespeare is right: the embodiment of beauty, the very idea of it, may be a mistake.

 

 

  

Je Suis Thomas Paine

Freedom of expression is on everyone’s mind following the barbarous attack in Paris. 

I remembered three quotes from Thomas Paine yesterday: 

“These are the times that try men’s souls.”

“Independence is my happiness, and I view things as they are, without regard to place or person: my country is the world, and my religion is to do good.”

“To argue with a man who has renounced the use and authority of reason, and whose philosophy consists in holding humanity in contempt, is like administering medicine to the dead, or endeavoring to convert an atheist by scripture.” 

As the late Christopher HItchens would remind us, scripture is often violence. 

Snowing

The weather man says big things are coming, by evening an avalanche will likely occur though I live in a flat place where the few straggly hills are largely domesticated—he points to a map—snow, he says, snow will kill us all. He knows of course it isn’t true. But he can’t help it. Disaster 24-7 is what the producer wants and there was a bombing today in a schoolhouse and the snow must therefore be lethal. “Its killer snow,” he says, looking like a scribe, an ancient keeper of scrolls, who has written a doleful note in the margin. I want to tell him I love the snow, that the world doesn’t end, but in these electronic dark ages the best you can do is blog.  

Disability and Whatever It Isn’t

What is a disability exactly? The answer is inexact since disability isn’t a physical matter.  Its an economic idea, the term put into currency by Karl Marx to designate laborers who, owing to misfortune, were no longer able to work in factories. Disability is therefore a 19th century term. And today Karl Marx haunts every disabled person like one of Scrooge’s ghosts—“you shall work no more; work no more….”

We don’t acknowledge the economic origins of the term, preferring to imagine disability is a medical circumstance. Legislatiion is written to reflect this view. But disability is not a physical problem. Its still an economic idea. Give disabled people proper work place accommodations and most can work. 

The numbers are terrible. 70% of the disabled remain unemployed in the US. This is a failure of imagination. Its the 19th century. 

I think its worse than that. I think its national cynicism. “We don’t need to hire these people; they might be expensive; besides the government looks after them, doesn’t it?” I believe when we use the term “corporate welfare” we should always add the word disability. 

Disability corporate welfare means that no one in business should ever be inconvenienced by having to think about hiring the disabled.  The government will look after the lame and the halt. 

Last year National Public Radio and Planet Money aired reports about social security disability fraud. The reporting was discredited but the narrative reflected the struggles of blue collar workers claiming disability because they could no longer lift boxes. Ira Glass missed the point: without accommodations disability becomes an economic term. The workers with slipped disks and carpal tunnel are in need of work place reassignment. But we don’t do this in America. In this way the HR people are Marxists, irnocally enough. “We’ll let the government handle this.” Workaday America doesn’t believe in accommodaions.

How we manage accommodations and universal design will reflect just how eager we are to be a 21st century nation.