Gold Mask and Bare Foot

For reasons that are hard to fathom many of my friends are suddenly quite ill. Texts and emails popped into my phone while I was traveling last week. It’s not proper to name names. But dear friends, lovely people, just and clear people in my circle are suffering in far flung parts of the country. I wanted to cheer up one of my best and most dark minded friends who’s been undergoing a battery of tests—hence spending hours in hospital waiting rooms. I wrote:

Waiting to see doctors is like wearing a suit of goat’s wool while listening to a pipe organ.

Like eating intestines from a take out box while riding the Greyhound.

Thinking you will become gifted musically if you do or do not get operated upon.

Tasting virtual lemon jello while staring at the bad art in the waiting room.

And the half dead grey forest rustles its leaves…

 

**

In Disability Studies we talk and theorize crip-epistemologies. The ulterior body, the altered body, the transitive and amorphous body is the condition of freedom, provided you’re seeing your differences as vital occasions of post-normalcy. Such views are thrilling of course—cyborgian prosthesis are now or soon to be fashionable. Normalcy is the grey forest, certainly.

But death is the body samsara—a site of sorrows. Our time here is quick. That’s a hard fashion statement to embrace. But its the only one I know.

Waiting to see doctors is like painting the leaves on trees.

Like returning empty handed from the granary.

I’m hoping for another tomorrow, mindful of the vanity of wishes.

Illness is hard to theorize as freedom. But so is medicine.

My heart beats are symphonic, eternal. So are yours. They won’t fit into medical sociology and counter statements to disableism.

Life is life. Its the breeze in tepid shadows and summer light.

Its a gold mask and a bare foot.

 

 

 

 

Disability Abuse Department

Every day I wake up and read horror stories about the disabled—some stories come my way via social media, others from traditional news sources. Whatever their source they all have the same sub-text: whether the abuser is a policeman, a social worker, a family member, a bureaucrat—disability life is still imagined to be reduced life even 24 years after the passage of the Americans with Disabilities Act. Note the word “imagined”—all of the abusers in the articles below imagined their victims were negligible people, or worse, weren’t people at all. The sheer breadth, the legion of these stories, tells us that these ugly imaginations are fed like bacteria in a petri dish. I’ve heard ugly sermons where disability is a metaphor for lack of faith; heard ugly radio where social services for the disabled are described as nothing short of fraud; heard college professors demeaning students with disabilities; heard bureaucrats and physicians and merchants all say in varying tones of disgust or approbation that they don’t have time for disability—this human condition thing is so inconvenient.

 

The trick, the daily art for the disabled is to like yourself anyway. And stay aware. Fight. Speak for others. These links come from http://www.disabilityabuse.org

 

1.   “Watch: Police Entrapping Disabled Teens in Pot Stings” — VICE recently reported on Jesse Snodgrass, a Temecula teenager with Asperger’s Syndrome who was bullied into buying drugs for an undercover … — SFGate — July 10, 2014  (CALIFORNIA)  http://is.gd/HCeXSg

2.   “11-Year-Old Autistic Boy Kept Inside Dog Cage at Anaheim Home” — The parents of an 11-year-old autistic boy were arrested Tuesday night after Anaheim Police discovered the boy living in a cage inside their home. — NBC Southern California — July 2, 2014  (CALIFORNIA)  http://is.gd/wWmW3V

3.   “Vallejo Caregiver Who Sexually Assaulted Disabled Adult Among 104 Fugitives US Marshals …” — The U.S. Marshals in the Northern and Eastern District of California arrested of 104 wanted violent fugitives and gang … — CBS Local — July 1, 2014  (CALIFORNIA)  http://is.gd/cUCEU7

4.   “Florida Woman Gets Life Sentence for Killing 11-year-old Autistic Stepdaughter by Gagging Her too …” — Florida woman gets life sentence for killing 11-year-old autistic … A Florida woman who gagged her autistic 11-year-old stepdaughter so tightly it killed … — New York Daily News — June 29, 2014  (FLORIDA)  http://is.gd/ehIYA5

5.   “Shocking Video of Lafayette Police Officer Pushing over Man in Wheelchair” — Eric Levy reports on a video released showing a man in a wheel chair being pushed over by police. Apparently the man in question … — Tyler Morning Telegraph — July 4, 2014  (INDIANA)  http://is.gd/KBZw0v

6.   “Disabled Foster Child Dies at Maryland Group Home” — A 10-year-old disabled foster child died last week while under the care of a group home in Anne Arundel County that Maryland health regulators were … — Baltimore Sun — July 10, 2014  (MARYLAND)  http://is.gd/VZ7EVn

7.   “Audit Says DHS Mishandled Allegations of Adult Abuse” — Under Michigan’s Social Welfare Act, the agency is charged with protecting adults who are vulnerable to neglect, exploitation or abuse because of … — Detroit Free Press — July 9, 2014  (MICHIGAN)  http://is.gd/bJeric

8.   “Saginaw Man to Serve 18 Years for Sexually Assaulting Mentally Handicapped Woman” — A 51-year-old Saginaw man will spend at least 17 years more years behind bars for sexually assaulting a mentally handicapped … — The Saginaw News — July 8, 2014  (MICHIGAN)  http://is.gd/ErHNJq

9.   “Grand Jury Indicts Caretaker in Abuse of Disabled Man” — A Nashville caretaker accused of beating a severely autistic man in an incident secretly captured on a cell phone video camera now faces felony … — The Tennessean — July 3, 2014  (TENNESSEE)  http://is.gd/HdXfR6

10.   “AP Exclusive: Thousands with Disabilities Denied Right to Vote in California, Group Says” — At a time when election officials are struggling to convince more Americans to vote, advocates for the disabled say thousands of … — Greenfield Daily Reporter — July 10, 2014  (CALIFORNIA)  http://is.gd/wgbsrH

11.   “Common Core Accused of Leaving Special-needs Students Behind” — There are 6.5 million special-education students in the U.S. today, and most are falling further behind their peers under Common Core standards. — Deseret News — July 6, 2014  (U.S. – NATIONAL)  http://is.gd/Sqw1eX

 

Dog Dreams While Sleeping Beside the Grand Canal

When you live long enough with a dog, and a smart one at that, your dreams are less panicked and more lyrical.

 

After Milan Corky, Connie and I went to Venice. By day, in our waking lives we floated in a gondola and heard caged birds call from windows. I heard a cuckoo singing from a building where Mozart once lived. Corky sat tall and looked regally in all directions.

 

By night, asleep in our hotel beside the grand canal we dreamt richly—all three of us.

Corky sighed and puffed and moved her feet. Connie said something in her sleep. I dreamt I was in the middle of a field at night, lights from a far town in the distance. I understood friendships were on the horizon. I felt light and strangely cultivated. Sometimes in sleep you realize you’re in a kindly dream. Walking by day along the canals of Venice with a strong dog had offered pleasing trajectories, and dreams replayed them. A good dream makes a home inside of you. There are people and animals who love you sincerely. In a lucky life you wake and find its true.

 

Disability vs. the Wide World

 

I remember those Scandinavian houses with the tall white tile ovens—they stood in the corners of rooms like spies. Adults of course think these things give a home character. This is the difference. Old people give away thoughts that are neither hunger or thirst. Some days the horror of adult life is enough to drive one under the bed. My little boy, the one who became me, knew those stoves stood in the crack between wakefulness and dream. And years later, when I was in college and reading Edgar Poe, I felt the hypnogogia as he called it, and saw that disability was in fact the tell tale heart—the life that goes on under the floor; the life that’s been operated on; the one on the tip of your tongue but never uttered.

 

Here’s the thing: there are days when you don’t want to go outside. The adult world is filled with stove makers. You stay home and drink tea. You think about all the creepy doctors. The spies.

 

You think about all kinds of things. You promise to get strong presently. By the afternoon you’re ready to go outside. You take your indignant, nail studded wheelchair, guide dog, hobby horse and go to the grocery. And though all the customers and employees stare at you, stare as if you’re the skeleton in a morality play, you roll or walk a most strange course straight for the olives with pimentos. Lord knows, sometimes happiness slowly crawls into you.

 

 

 

 

 

Life in America

Life in America

 

I dreamt last night I was riding on a train

I met a cowboy philosopher

He spoke about the joy of adjectives

and then he stole my luggage

 

 

Elämää Amerikassa

 

Näin unta viime yönä olin ratsastus junassa

Tapasin cowboy filosofi

Hän puhui iloa adjektiiveja

ja sitten hän varasti minun matkatavarat

 

Flowers for Horowitz

Once on a trip to Italy with my wife Connie and my guide dog Corky we went to the vast Milanese “city of the dead” the “Cimitero Monumentale di Milano”. I carried a bouquet of roses to place at the tomb of Vladimir Horowitz. The great pianist’s family had left a considerable sum to Guiding Eyes. The Wanda Horowitz endowment provides graduates with veterinary assistance funds in cases of financial or medical need. Long ago, in the early 1960’s the Horowitz family owned a released dog from Guiding Eyes as a family pet. No one at Guiding Eyes suspected the great composer would eventually leave his Manhattan townhouse and his Steinway piano to a small school for the blind. As for me, I’d grown up listening to Horowitz. I’d worn out my LP of his 1965 “return concert” at Carnegie Hall. His recordings of Schumann owned a  central place in my music library. Once I’d even seen him live in Chicago from stage seats—I’d been only ten feet away from the Maestro.

 

The Horowitz tomb is really the Toscanini family tomb—Wanda Horowitz was the great conductor’s daughter. I laid the roses before the wrought iron gate of the tomb and Corky scented the soft air. Connie pointed out a funerary monument shaped like a pyramid and the famous avenue of trees. We walked a long way. We passed the tomb of the composer Amilcare Ponchielli and the poet Salvatore Quasimodo. The birds sang. I felt the mysterious and unforeseeable ways we’re interconnected. I felt warm. Felt how much I loved my life. And the dignified upright gravediggers waved as we passed. One of them said “cane guida”. “The grave diggers are more cheerful than the waiters in Milan,” I thought.

 

With a Guide Dog in Italy

From a Notebook, 1998: 

In the hotel Visconti I told a waiter my dog’s name was fortune. Somehow in a Milanese restaurant “fortunato” sounded better than Corky. The waiter liked the name. “Bunoa fortuna,” he said. “Good luck.”

 

Working a service dog in Italy wasn’t easy. Italians had three kinds of responses to a guide dog: disinterest, hostility, and lovey dovey. The first two were most common. Our first morning in the hotel the maitre de refused to seat us for breakfast. An unruly conversation ensued. The manager was called. There was a lot of cliched hand waving and rapid fire Italian. I stood straight before them with my obedient dog. All around us people sipped blood orange juice and coffee. Finally the manager took my elbow and said “sit sit” as though I was also a dog.

 

More hostility came our way at the Santa Maria delle graze. A nun refused to let me in. Her umbrage was sizzling. Like Peter in “The Last Supper” she might have been pointing a knife. “No no no no!” she cried. I urged Connie to go in alone while Corky and I stood outside in a shaft of mid day sun. As I stood and rubbed Corky’s ears I had to laugh. The nun had made a gurgling noise like an angry swan. But still, the larger picture wasn’t funny. Guide dog acceptance among Italians was clearly conditional. At the Duomo a machine gun carrying guard waved us straight into the cathedral. At “La Scala” the opera house, no one said a thing about Corky. But I never knew, step by step, whether we’d be accepted or dismissed. Italy does have a guide dog school, “Scuola Nazionale Cani Guida per Ciechi di Firenze-Scandicci” (National School of Guide Dogs for the Blind in Florence-Scandicci). There are guide dogs in Italy, and there are laws protecting the rights of guide dog users to travel everywhere the public goes. But somehow the word hadn’t penetrated everywhere. “You know,” I said to Connie, “when the law isn’t understood, then you’re traveling on sufferance. Which in its way is a kind of sport. Will you strike out, or get a hit? You just don’t know.”

 

If disinterest and hostility were problems they paled when met by the lovey-dovey. Strange, perfumed women in fur coats would throw their arms around Corky’s neck and sing nursery rhymes to her while I stood helpless. Happy people are the world over gifted musically. What else can you say?

 

Dog Luck

You only get to tell your story if you haven’t given up on love. I tell this to students sometimes. You only get to tell your story if you don’t seek comfort from others. I say this too. Let happiness slowly crawl into you as your speak or write. Know its delicate. Know silence is on your side. Tears are on your side. The nothing that is not there and the nothing that is…

 

I got down on the floor with Corky and cried. The season was incomprehensible and strong. I cried because I would never give up on love. Cried because I was tender inside. Cried because my dog could bear my weight just then, just there. “Our fate is in the stars, dear dog,” I said.

 

A dog is a comfort. We got up together and walked outside in the spring twilight. We were both far away from home. We both loved one another sincerely. We walked around a pond. I told my dog life becomes slow and strong, but only when we’re lucky.

 

Only when we’re lucky my dog. We only get to tell our story if we haven’t given up on luck.

 

Long Time Disabled

 

It rains in the apple trees

Where three crows land

In a dome of blossoms—

I watch with my clear head

The way blind people do

Feathers wet leaves

Bird’s feet

Scratching boughs

I like the one who doesn’t speak

She’s perfect—

The unlit candle in a church

Green sorrow

Is a waste

Do not seek comfort

From others; nor music

Breathe against a window

Write your name