Category: Uncategorized

By Andrea Scarpino

 

 

A fluttering in my chest. I first noticed it six weeks ago at the end of a cold—a feeling almost like I had to cough. But it continued long after the cold: a fluttering. An extra breath. 

 

I told my doctor at my annual exam, and she ordered a holster monitor EKG, an echocardiogram. For 24 hours, I wore a string of electrodes on my chest, bottom of my ribs, clicked a button on the holster every time I felt a fluttering. Then the echocardiogram: I watched the images move on the screen. My heart. Beating inside my chest. 

 

Verdict: trivial mitral insufficiency. Follow-up with cardiology. 

 

My father’s teenage brother died from a ‘heart issue’—maybe rheumatic heart fever. My father had congestive heart failure, my mother has a heart murmur. Basically, I’m in good company. 

 

I’ve been thinking a lot about the body, how we conceive of it. How it moves through the world. How we are trapped in it. How to shift my thinking of my own body from a site of loss—pain, struggle, brokenness—to a site of. . . . well, of something else. 

 

Bill Cunningham describes fashion as ‘armor to survive the reality of everyday life.’ Alexander McQueen also described fashion as ‘armor.’ Aimee Mullins, who worked with McQueen to create art-quality prosthetic legs, legs carved from wood, china doll legs, says, ‘I just felt differently in different legs.’ Says we should be creating prosthetics not to replace loss, not to hide disability, but as wearable art. With imagination, with artistic flair. 

 

When I had an accident skiing in high school and had to order a specially made knee brace, I chose a bright red color. I didn’t think twice about it—it was a beautiful red. Afterward, my mother was stunned—and pleased, I think—that I went with such a loud color, a color that wouldn’t hide itself against my clothing. I could have chosen navy or brown, common pants coloring, colors that, in retrospect, would have served better to hide my newfound disability. I chose red because I found it beautiful. It shined in sunlight. 

 

I’ve been thinking about armor for the body, what that means. I’ve been thinking about the body as something other than loss. I’ve been thinking about my new heart fluttering: mitral insufficiency. How beautiful I find those words. Even as they describe deficiency. 

 

According to the radio a storm is coming. The giant oak raises lead balances like a clock. A friend once told me my writing was “too experiential” but I didn’t ask him what he meant. A storm is coming. It wishes me neither good nor ill. I have a thirst for simple answers. The storm has no thirst–no patience, just a promise. 

 

Trotsky said: “ideas that enter the mind under fire remain there securely and forever.” But I have too many friends damaged beyond recognition by war to believe him. Ideas that happen by fire are not secure. They are like small birds at the scene of an explosion. 

  

It’s the hours before a storm that count.

 

The stone wall under snow sticks its faces out and they look like old men keeping an eye on things. Walking this morning in the cold I wanted very much to be sentimental, to ask the slender shadow of my boyhood to come along–the kid who was always groping,  putting his blind feet forward. Wisdom is only fed by a few facts, but many surprises. All night I read about the Nazi philosophers and their eager embrace of euthanasia for disabled children. I was fed by that fact. Then I went out into the restless shadows of the winter woods, and my larger name was swallowed by the cold The boy in me was very much alive, said: “the swaying birches are Samurai.” 

 

I am lonesome and direct my antennae at the twilight

and across the fields, at the eyes of houses

strangers also at telephones

 

so we make a chorus. No wonder

twenty thousand years ago

we invited dogs inside. 

 

Winter now gray strange. 

No one answers.

 

At times my life seems to hear a long way off.

I hear the traffic in Cairo, in Kuala Lumpur, 

The excited small occasions, the minor miracles. 

I remain in the house and no one sees me. 

 

It is like that childhood day when, alone, 

solitary with my blindness, I heard a long turtle ease

herself from the shadows in a boathouse,

pulling forward through doors of darkness.

Morning. Winter rain. The meadow is silent still

as an empty stove. Trees silent. And in the sky

a withered leaf flutters like one of death’s butterflies–

scrapes the window going past. 

 

My dream last night goes outward like ripples on water.

My brother, long dead, is in a boat, turns with oars,

spins in waves, looks for a sail

by the far shore, against dark pines.

 

(The Hindu)
February 19, 2013

NEW DELHI, INDIA– [Excerpt provided by Inclusion Daily Express] The One Billion Rising (OBR) global campaign to demand an end to violence against women has provided disability rights groups an opportunity to bring the spotlight on the harassment faced by disabled women.

Access consultant and executive director of Samarthyam Anjlee Agarwal said on Friday that her organisation, which promotes accessible environments, had organised day-long events on Thursday to seek a stop on violence against women, especially women with disabilities.

She said the initiative has got the support of Delhi Metro which joined Samarthyam to make Delhi a safe, gender friendly and inclusive city by displaying digital flash message on violence against women in its train coaches and at all Metro stations.

In several places like YWCA, NDMC Connaught Place, Jantar Mantar and Parliament Street, Ms. Agarwal said dancers of Samarthyam and Ability Unlimited Foundation performed on the theme “Delhi Rising” on wheelchairs and in doing so showcased their abilities. The message that they had for women with disabilities was “Celebrate life, celebrate diversity and celebrate freedom”.

Entire article:
‘Delhi Rising’ for women with disabilities
http://tinyurl.com/ide0219133

(WJLA)
February 19, 2013

FREDERICK, MARYLAND– [Excerpt provided by Inclusion Daily Express] The Baltimore County Medical Examiner’s office ruled that a 26-year-old intellectually disabled man died by homicide while in custody in Frederick.

The medical examiner ruled that Robert Saylor, of New Market, was asphyxiated and the manner of death is a homicide. He died on Jan. 12.

Saylor was at a movie theater with a health aide in Frederick on the night of the incident. He had just watched Zero Dark Thirty and refused to leave the theater after the film ended, authorities say.

Three deputies were called to handle the situation. Saylor was handcuffed and was allegedly resisting arrest when he had what authorities describe as a medical emergency.

According to a law enforcement source familiar with the case, the 26-year-old went into distress when he was put face down on the ground.

Entire article with video clip:
Robert Saylor death ruled a homicide
http://tinyurl.com/ide0219132a
Related:
Robert Saylor’s Death Ruled A Homicide: Man With Down Syndrome Died In Police Custody (Huffington Post)
http://tinyurl.com/ide0219132b

–in memory of Muriel Rukeyster

 

 

So finally what choice do you have? Break bread with the poor. 

The sturdy paw of want has touched your shoulders. 

 

Swarms of humans all around–the sun shining 

on everyone, what choice do you have? Walk anywhere,

 

woods are mild, the eyes of horses, mild, green 

is calm, dreams, windows high in old churches,

 

world is love. Sun ripples, churns on water. 

Break bread. 

 

Walk with an empty bridle. 

Walk.

 

I am a lucky man. Although I bear the emotional scars of a tough childhood—a disability childhood, one with bullying, cruel teachers, lots of loneliness—I have had the startling fortune to meet magnificent people throughout my life. These people are like the shine of fish darting in summer. They come out of black water and the heart no longer feels alone. One of these fish-shine people is D.J. Savarese, the son of my friends Ralph and Emily.

via www.planet-of-the-blind.com

Some days its proper to reblog a good post. If I was a disc jockey, I'd say: "This is going out for D.J.!"