Susan Senator's Column about Amelia Rivera is a Call for Disability Rights

Perhaps you've been following the tragic story of Amelia Rivera, whose doctors have denied her a kidney transplant because the three year old is "mentally retarded" and whose story has, predictably lead to the unleashing of the barking classes–the apologists for neo-eugenics who are legion in this country. Since learning about Amelia's story last week I've been unable to sleep and have felt the powerlessness that comes with abjection, deep sadness, outrage, and yes, more than a modicum of personal feeling. I was born prematurely and back in the 1950's it was very rare for a child who weighed 2 lbs to live. Indeed my twin brother lasted only a few hours. I've always imagined what might have occured–that the abstract and clinical determinism of cold medicine could well have said that my little life wasn't worth saving. They could have used that incubator for real chickens. Hearing Amelia's story is deeply troubling because it's not just the story of a singular little girl, it's the story of all people with disabilities. Susan Senator's column at Huffington Post serves as an elegant reminder of the human and social issues that are so singularly at stake. 

 

 

From a Dog Diary, 1994

Corky, my beloved, has placed a half mouse in my hand. Or is that a halved mouse? A mouselet? One thinks of middle English, which would of course have an exact term for the back end of a mouse. Once, while I was teaching at Hobart College, I offended a student by telling him that a “Fudd” is defined in the Oxford English Dictionary as a rabbit’s rectum. The student was offended because I said that Elmber Fudd’s creators knew this fact. Somehow I’d spoiled his childhood. But now I have a mouse’s ass, cold as jelly in my open palm. Thank you girl!   

 

Essay: Generosity and Disability, America's Shame

“Let us forget with generosity those who cannot love us.”

The line is Pablo Neruda’s.

This is not possible, as indeed it was beyond Neruda’s grasp at the end, when his beloved Chile was annihilated by Henry Kissinger. Those who cannot love us mean us real harm. In this country, in this hour, the Tea Party Republicans want to eliminate all social programs benefiting the poor and the elderly or people with disabilities. That is a story about which the outcome remains in some doubt. What is not in doubt is the predatory and heartless social reformation well underway in the United States–a reframing of social Darwinism without apology.
Here is a quote from The Nashville Examiner that tells a tale so Dickensian I want to scream:

“A few days ago, doctors at the Children’s Hospital of Philadelphia delivered stunning news to parents Joe & Chrissy Rivera. They were denied approval to a life-saving kidney transplant needed for their daughter, three year old Amelia. The reason given: “Mental Retardation.”

When the Riveras were told they would never be able to get on the waiting list they objected, stating that they or someone in their family would donate a kidney. There was no need to wait for a donor. But the doctor persisted.

“She is not eligible because of her quality of life. Because of her mental delays,” the doctor insisted, according to Chrissy Rivera.”
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Essay: Lyric Life

I was on a playground in Durham, New Hampshire. The year was 1960 and I was five years old. I had thick glasses and I was smaller than my classmates. A big kid who I’ll call Rollie came up to me with a handful of dirt which he clearly meant for me to eat.

“You will eat this,” he said.

“It looks good,” I said. “Hey Rollie, have you ever eaten an acorn?”

Rollie held his dirt before him like a little pillow.

“An acorn?” he said.

“Yeah, they’re just like peanuts, really good, that’s why squirrels like them. You want one?”

“Sure,” he said. He held out his other hand and I dropped a neatly shelled acorn into his palm.

“Go on Rollie, its yummy!”

Rollie ate it. Then he turned red, and I mean red, not beet red or fire engine red—he was red as an unkind boy with his mouth swollen shut. Acorns are among the bitterest things on earth. And of course I only knew this because I’d tried one. I was a solitary kid. Spent a lot of time in the woods. Those were the days when a boy could still go to the woods.

Rollie was incapacitated. I don’t think he ever bothered me after that.

I still recall the thrill of my discovery. That a feeling, a simple reaction, a swing tricked out with language could render a nemesis harmless was rousing.

I didn’t do a little dance. Didn’t brag about the matter. But I was on the way.

A lyric life, I will imagine, is one wherein you can access feelings and then, by turn do something productive with them.

The simplest definition of a lyric poem is a poem that expresses the writer’s feelings.
Freud said: “Life as we find it is too hard for us; it entails too much pain, too many disappointments, impossible tasks. We cannot do without palliative remedies.”

One of those palliative remedies is lyric itself. One may think of this as causative intuition, a feeling that trips a switch and makes you sing when you should properly be weeping or running for your life. Again Freud: “Man should not strive to eliminate his complexes, but to get in accord with them; they are legitimately what directs his contact in the world.”

We are getting in accord. We are beside a country road picking edible flowers in the cool of the day. We do not pick edible flowers beside highways because there are pesticides in trafficked areas.

We remove the pistils and stamens before eating.

“Hey Rollie, wherever you are, have you ever eaten Milkweed?”

“Rollie, you can trust me this time. It tastes like green beans.”

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Essay: Helsinki Part Three

There are poets of glass: Hilda Doolittle with her sands of Egypt, Li Po drawing fortunes on water, even Kropotkin who saw history through a cup of red tea.

Today I saw a raven study itself in a department store window. “Death,” said Tennessee Williams, “is one moment, and life is so many of them.”

The raven turned his head from side to side, like a precision tool. He was expressing his gratitude in a city of glass–the bird’s sidelong glance like nothing you will see from the birds who live beside stones.

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Sad Disability Rights Failure in India

Children Languish Without Education As India’s Laws Go Unenforced
(Times of India)
January 11, 2012

BANGALORE, INDIA– [Excerpt provided by Inclusion Daili] Syed Umer Farooq wanted — wants — to become an automobile engineer but was forced to leave school after class VII because no school wants him. And the law is not helping either.

Syed is now 18 and suffers from muscular dystrophy. He completed class VII in 2009 from Shradhanjali Integrated School (SIS ) in Lingarajapuram, Bangalore. SIS, which is a special school, only goes up to class VII and Syed has been looking, increasingly desperately, ever since for another school to take him. But in the two years since 2009, he’s been refused admission by 30 schools.

The revolutionary Right to Education (RTE) Act, 2009 will not come to his rescue for he falls outside of its purview. According to the RTE Act, a child is entitled to free and compulsory education till the age of 14. But Syed is already 18, so the schools are able to turn him down without fear of prosecution.

Adding to the confusion, another law — The Persons with Disabilities (Equal opportunities, protection of rights and full participation ) Act, 1995 — says every child with a disability has the right to free education till the age of 18.

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