Advocacy Groups Push For 'Strong, Unequivocal' Legal Guidance On Organ Transplants

(Babble.com)
October 1, 2012

WASHINGTON, DC– [Excerpt provided by Inclusion Daily Express] In response to two major stories involving people with disabilities being denied organ transplants, in part due to their disabilities, a national coalition of fourteen different advocacy groups is pushing for change.

The National Disability Leadership Alliance met with senior staff at the U.S. Department of Health and Human Services, Division of Transplantation, to urge HHS to issue legal guidance to transplant facilities regarding their responsibilities under the Americans with Disabilities Act.

The National Disability Leadership Alliance (NDLA) is comprised of fourteen advocacy organizations that are run by and for people with disabilities At the meeting, NDLA was represented by Ari Ne’eman, president of Autistic Self-Advocacy Network; Kelly Buckland, Executive Director of the National Council on Independent Living; and Diane Coleman, president of Not Dead Yet. The group discussed organ procurement and transplantation policies, and how they impact people with disabilities of all kinds.

Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. NDLA’s representatives raised the recent cases of Amelia Rivera and Paul Corby, individuals with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue “strong and unequivocal legal guidance to prevent such acts of discrimination,” according to ASAN’s website.

Entire article:
Disability Advocacy Groups Push for ‘Strong, Unequivocal’ Legal Guidance on Organ Transplants

http://tinyurl.com/ide1001123

Dryad

Comes in summer, sneaking back, my brother. He was my twin.  In life he had no talent. Comes in summer as a dragon fly. 

 

Weightless like all the soldiers of the dead my brother walks–upturned eyes of life in his footprints. 

 

Did you ever hear a thrush create a lonely pillar of song? This is something like that. 

 

 

 

Your support makes a wonderful difference

Stephen Kuusisto 
Director
The Renee Crown University Honors Program 
University Professor
Syracuse University

Begin forwarded message:

From: Guiding Eyes for the Blind <connections@guidingeyes.org>
Date: September 28, 2012, 9:18:05 AM EDT
To: STEPHEN-KUUSISTO@UIOWA.EDU
Subject: Your support makes a wonderful difference

 

Donate | View
Online

  

CONNECTIONS
Guiding Eyes for the
Blind                            
October 2012

Our Blind
Students and Graduates are Counting on You.
Please click here to
DONATE TODAY!

After a very hot summer, we have welcomed the
beautiful weather at Guiding Eyes these past few weeks.
Mother Nature has made it easier on our students and guide
dog partners as they train together in rural, suburban and
urban settings.

This month’s class includes teachers, an author, a
social worker, a musician, a former cross country truck
driver, a high school student, a college student, and a
former plumbing and heating business owner. Whatever their
age or occupation, most experience some anxiety being away
from home and learning to work with their new Guiding Eyes
dogs. But thanks to the support of kind friends like
you
, we are able to continually upgrade our facilities
and dormitories to make our students’ experience as
comfortable and “homelike” as possible.

Raven Tolliver, a 19-year-old
who graduated from Guiding Eyes a few months ago, was
grateful not only for her new guide dog companion, but also
for the friendly atmosphere and excellent facilities at
Guiding Eyes. She said, "When I arrived at Guiding
Eyes, I felt right at home because of the good food, my own
room, the student lounge, and the helpful
staff."

All students
have a private room with a phone located at their bedside.
The phones are specifically designed for accessibility, with
buttons that feature Braille letters. For those with hearing
problems in addition to vision loss, the phones are hearing
aid compatible with amplified volume.

The bonding process between a
blind student and Guiding Eyes dog enhances their ability to
develop into a successful working team. An ideal way to get
to know each other during "down time" from the intensive
training is by taking a stroll along the
specially-constructed walking path on the grounds of the
training school. This beautifully landscaped trail features
a footbridge and benches along the way for resting or simply
enjoying the fresh air and sunshine.

As you can imagine, it is a tremendous expense to
provide essential services and maintain top-notch
facilities. Students receive their magnificent guide dogs,
training and lifetime follow-up services FREE OF CHARGE. As Guiding
Eyes is a 501(c)(3) non-profit organization, we rely upon
donations from individuals, corporations, foundations, and
organizations.

Please take
this opportunity to support our work at www.guidingeyes.org/donate . For more
information about our programs and services, visit our
website at www.guidingeyes.org . On behalf of the
entire Guiding Eyes "family", I thank you for your
generosity and commitment.


Sincerely,

William D. Badger

President

connections@guidingeyes.org

611 Granite Springs Rd.
Yorktown Heights, NY 10598 (800) 942-1049

Click here to
customize your email preferences.

Something

I am on the Amtrak train heading north and west from the Metro New York region. My guide dog is under the dining car table, safely out of the way of foot traffic and I have my Mac plugged into the train’s power source and the wifi is working and outside the windows you can see the mighty Hudson River and the mountains of beautiful New York  state. The train is swaying like a drunken Finn who has come to town after years in the woods. The train is swaying like a bug eyed chicken. The train is really wobbly and if you had a penchant for seasickness I’d think this would be really bad for you. In a minute I’m going to try and drink a Pepsi. We shall see how that goes. 

 

Mostly what I’m thinking about is the beauty of the guide dog movement–I’ve spent the last three days at my alma mater, Guiding Eyes for the Blind which is I believe (with some evidence) the nation’s best guide dog program. I’ve been interviewing the trainers about their work which, as you doubtless know is astonishingly complex–or you can imagine how complex it must be, for the aim is to train a dog from knowing nothing to being able to guide a blind person on the streets of New York, New York. And then your job is to train a blind man or woman to work with that dog, to trust it, to love it and follow it and become a bonded and soulful team. Frankly I know of no more beautiful job in the world, and I get choked up thinking about it. People who love animals and human beings equally, who want to see blind people succeed–that’s something. 

 

That’s something. That’s something.

Orwell in the Classroom

Yesterday I tried to help my undergraduate students see how important it is to entertain doubts about the rhetoric of national circumstance–not merely as a generally useful practice in our political lives, but as an exercise in intellectual honesty. And accordingly I talked to them about George Orwell’s essay “Shooting an Elephant” where Orwell begins his narrative about serving as a minor British colonial official in the Far East with the memorable assertion: “In Moulmein, in Lower Burma, I was hated by large numbers of people — the only time in my life that I have been important enough for this to happen to me.”

The essay as you likely know, narrates a young man’s tale of personal and cultural insecurity (the two are not the same) and unfolds a dramatic instance of hypocrisy in action. Orwell demonstrates his capacity for emotional candor describing how he shot a runaway elephant for no better reason than wishing to avoid the appearance of cowardice before a crowd of rural onlookers. The crowd consists of the colonized. He is the “imperial man” and the elephant, who is peacefully eating grass is the sacrificial victim.

“Shooting an Elephant” is about a great variety of things, most having to do with what we call nowadays by the inelegant term “arriving at consciousness” which means the first deep instance of knowing more than one kind of irony in a single moment, and in turn knowing that you have failed a human test. The failure comes when we know our motives are sullied and our actions are vain and theatrical. This is the material of tragedy if we don’t learn to give words to it. Orwell gives his cowardice the proper lingo. In his essay “Why I Write” he said that writers principally write for four reasons–the first two are easy, “getting back” at the adults who embarrassed us in childhood; and the love of beauty. But it’s numbers 3 and 4 that I wanted my students to see (Orwell): “(iii) Historical impulse. Desire to see things as they are, to find out true facts and store them up for the use of posterity. (iv) Political purpose. — Using the word ‘political’ in the widest possible sense. Desire to push the world in a certain direction, to alter other peoples’ idea of the kind of society that they should strive after. Once again, no book is genuinely free from political bias. The opinion that art should have nothing to do with politics is itself a political attitude.”

I couldn’t tell if they were seeing what I wanted them to see–that personal bravery and public bravery depend on the fierce desire to see things as they are and not in terms that we invariably prefer. I tried to use an analogy from current affairs–noting how the pundits on American TV have responded rather broadly to the death of the US ambassador to Libya by arguing that the Muslim world simply hates American values. “Isn’t it possible that widespread rancor against the US has something to do with the fact that we have killed over one million people in Iraq; that our drone assaults are largely killing civilians?” The truth should make one uncomfortable and one is best counseled to never forget it.

Of course this is an overdetermined way of saying one should admit his mistakes. Orwell:

Afterwards, of course, there were endless discussions about the shooting of the elephant. The owner was furious, but he was only an Indian and could do nothing. Besides, legally I had done the right thing, for a mad elephant has to be killed, like a mad dog, if its owner fails to control it. Among the Europeans opinion was divided. The older men said I was right, the younger men said it was a damn shame to shoot an elephant for killing a coolie, because an elephant was worth more than any damn Coringhee coolie. And afterwards I was very glad that the coolie had been killed; it put me legally in the right and it gave me a sufficient pretext for shooting the elephant. I often wondered whether any of the others grasped that I had done it solely to avoid looking a fool.

1936

 

Running Romney’s Income

By Andrea Scarpino

Twenty minutes before the start of the half-marathon trail race, Zac and I sat in our car listening to National Public Radio’s Weekend Edition. It had been raining for five days straight, the parking lot muddy, orange leaves blown down from wet trees. We sat in the car, heater and heated seats blaring, trying to soak up all the warmth we could before we started running.

On the news: Mitt Romney’s campaign had just released his previous year’s tax returns. Romney’s income topped $13.7 million. “That’s almost how far we’re going to run,” I said: one mile for every million dollars.

We started at the early start, the “slow man’s start” as another runner called it. Through wet woods, Zac and I pulled ahead of the crowd as we turned onto a trail alongside the lake. The wind picked up, huge waves cashing against the shore. It was beautiful: Lake Superior waves, white-capped, sandy trail, red pine trees. And then we passed the one-mile marker.

“One million dollars!” Zac said, then laughed like Count von Count from Sesame Street. And so a race day refrain was born. Every time we passed a mile marker, one of us would call out the corresponding millions of dollars in our best Count von Count accent—two million dollars! Seven million dollars! Mile by mile, we ran Mitt Romney’s annual income. Through rain and mud puddles, through several minutes of hail. Through two ascents to rocky peaks.

When we reached the top of the first ascent around mile four, we stopped, looked over the lake. Sunshine broke through the higher clouds, but wide bands of rain moved just below them. And then the second rocky peak around mile 10—10 million dollars! A man stood at the top blasting an air horn for encouragement. “You can do it,” he shouted as Zac and I slowed to a brisk walk, the rock face slippery from rain. “Thank you,” I said when we finally reached him. And we stopped again to look over the hills, bursts of bright orange and yellow trees, bands of darkened clouds. And then we started running again, the air horn fading behind us as the man yelled encouragement to other runners.

Mile 11—11 million dollars!—we returned to the trail by the lake, waves breaking so loudly I could no longer hear Zac’s footsteps. And I thought about Mitt Romney’s income, how in one year he makes more money than I will ever make. How unaware he’s been of his own privilege. How dismissive of those who make less than him—nearly all of us—how dismissive of those who are poor. Mile by mile, 13.1 miles, we ran a little less than his yearly income, called it out for the other to hear. Two and a half hours of hilly terrain, two rock ascents. Rain and hail and muddy, wet feet and cold-stiffened hands.

And this is partly what scares me about a Romney presidency: how little he understands of the run, the fight, of working hard long after you want to stop. How little he understands that you can work harder than you thought possible and still struggle financially. Still never reach the middle class, let alone millionaire-hood. And also, this: how little he understands of beauty: an autumn morning’s rain, sun rising over a lake, pine trees and gnarled roots and sandy earth.

 

Micro Memoir 94

 

I remember waking early and looking out the far windows of my little room, and because my eyes were not any good I surmised–guessed at the waving of the curtains. This was easy to do as they rippled like flags and I could hear the swaying of the pine trees. To this day I love that room. I believe I wake some mornings expecting to be there.

Lonely

 

 

This is a proposition about life, mirror in hand, part of the tree behind you.

Mirror in hand, part of a tree, the top? Surely it’s not the roots, 

Just the middling trunk, a sad and slow becoming.

I wanted drama as a boy, climbed the oak, cried out 

that I was king–don’t know if kids climb 

oaks these days–suspect it isn’t so; 

suspect many things, mirror in hand,

highlighting rooves, the haycocks, stoic fences,

parts of things in the glass, 

the rest all up to luck.