The National Association of the Deaf and the American Association of the Deaf-Blind have released a formal statement on the euthanizing of twins in Belgium who preferred death to becoming deaf-blind.
You can read the statement here.
Apparently the Belgians would imagine Helen Keller’s life to be of no apparent value?
See this article by Colleen Flaherty at Inside Higher Education. Obviously I’d be out of the running for a position at California’s Azusa Pacific University. Apparently sight is an expectation for faculty, as well as weight lifting.
Two days ago I wrote a fierce post about a specious and cruel article by Amy Lutz over at Slate and I’m grateful to the folks at Ollibean for reposting it. We at Planet of the Blind urge you to read Shannon Des Roches Rosa’s piece over at Thinking Person’s Guide to Autism.
Ms. Des Roches Rosa wonders what would possess Amy Lutz, a mother of a child with autism, to attack the concept of neurodiversity and writes:
Autism parent Amy Lutz did her damnedest to verbally maul the Neurodiversity movement last week, at Slate.com. I’m still trying to understand her rationale, because why would she publicly attack disabled people for the crime of appearing less disabled than her own child? Especially the very advocates who are fighting to ensure a better future for all autistic people — including her son?
I’m used to seeing questionable writing at The Huffington Post, but was surprised to see Lutz’s baldly biased reporting in the Slate.com Medical Examiner section. She only cited sources — outraged parents like herself, mostly — who also believe “…that those who argue the Neurodiversityposition do so out of ignorance.” A statement which is not merely offensive but untrue: those who support Neurodiversity tend do so because Neurodiversity is their reality, and the neurodiverse their community.
Of course the answer to the question regarding Lutz’s attack lies with the discomfort that able bodied people have with non-speaking people, a discomfort that is not lessened by the act of parenting children with autism. That there is ableism in the autism parenting community is unquestionable, that there is so much of it is horrifying.
Thomas Fuller wrote: “nothing sharpens sight like envy” an observation fueled by the emerging disparities of 17th century Britain. Last night, unable to sleep, I watched the first two episodes of season three of Downton Abbey and saw for the first time that its essentially a soap opera driven by discrete and clarifying instances of envy, jaundice and begrudgement. In turn the traction of the series depends on the accompanying fiction of compensatory generosity displayed by various characters. In this way the series is not about class disparities so much as its about sentimentality–characters acting “out of synch” with their social positions. Everyone is sharp, one feels the creases and starches. And almost everyone overcomes the weight of envy. For me, this makes the show entirely unbelievable. Give me “Vanity Fair”.
Monday morning: exhaustion. 10 days of non-stop work for my university’s twice-yearly Residency, of faculty discussions and seminars taught, of student meetings, dinners, of answering questions, negotiating personalities, taking notes, of being attentive, expanding my ‘to-do’ list. I’m exhausted. Ready to go home. Ready for quiet. Ready not to speak with anyone.
In the hotel lobby, an elderly woman wears sandals despite the cold temperature, glittery gold nail polish painted on each toe. On the lawn outside the hotel: dozens and dozens of robins, red chests flashing in muddy green grass. I look across to the hillside where I saw two deer days before.
The airport van arrives, and the driver loads my suitcases for me. An older man, wearing a green Tartan hat and scarf. As soon as he starts the ignition, he’s talking: he used to live in a house right where the hotel is now, went to the Air Force and when he returned, his house was gone, new buildings gone up. He points to other buildings as we pass them, what this one used to be, how his high school days brought him up and down these streets.
A moment of flashing anger—I don’t want to talk. I don’t want to listen to stories. I’m exhausted. I want silence. But the driver’s scarf—a plaid my uncle would wear. His hat, a hat my father would have worn. Compassion, I think. And I ask a question. And the man unfolds his life: four years in the Air Force, then 25 as a firefighter, mostly in downtown Cincinnati, but later in a quiet suburban firehouse. Then early retirement before he turned 50. A second career as a college women’s volleyball coach. Then finally, his wife’s illness. How he drives the van two days a week. How he loves to see his grandchildren. A lifetime summarized in twenty minutes. His smile in the rearview mirror.
When we reach the airport terminal, he slows the van—we’re barely moving—to finish his final story. ‘I just want to get to the end,’ he says. Then we’re stopped, and he’s pulling out my suitcases, setting them on the sidewalk. And I want to hug him, to take his hands in my own.
‘I hope I’ll see you again,’ he says, and I nod. ‘I’ll keep your wife in my thoughts,’ I say.
And he drives away. And I think the rest of the day about this man, his Tartan scarf and hat, the cinnamon gum he stuck on the dashboard when it was clear I was willing to listen to him talk. And I think about what I would have missed if I sat stone-silent in the backseat, determined to be exhausted, determined not to engage. Compassion, I had thought. But really what I meant was, listen. Listen.
Nick Flynn writes, ‘Perhaps everyone has a story that could break your heart.’ Perhaps. Perhaps not. But how will we ever know if we don’t show interest enough, if we don’t step outside ourselves long enough to listen.
There’s a recent article by Amy Lutz over at Slate entitled “Is the Neurodiversity Movement Misrepresenting Autism”? –its title an embedded question designed to illicit a yes, as all rhetorical questions address the prima facie supposition (unspoken) between asker and reader that answers are not just known, but mutually known. Moreover, in a culture wedded to conspiracy theories, even those who know little about autism (or care little about it) will see in the word “movement” an oversized red flag. Movements inevitably “misrepresent”. Factor in “neurodiversity” and you have the semiotics of multiculturalism–an instigation of nausea to neo-liberals, who, like their conservative counterparts, imagine diversity represents something nefarious and un-canonical. (Politics is knowing who’s paying for your lunch, per Gore Vidal; all diversity types steal the canapés.)
Slate is scarcely reliable when it comes to autism. George Easterbrook’s piece, “TV Really Might Cause Autism”–offers a synopsis of an imprudent study at Cornell University arguing 3 year olds who watch too much TV may be neurologically damaged. Slate, is to autism writing, as a Potemkin village is to urban planning. Let us be clear.
Ms. Lutz reissues the tired ableist “voice over” narratives of non disabled people who talk on behalf of those who can’t. Her exhausted, nay, enervating reassertion that FC (Facilitated Communication) is a hoax is composed of ad hominem attacks on talented autistic people who have learned how to type. One is reminded of the old Harvard professors who exclaimed that Helen Keller was just a ventriloquists dummy for Annie Sullivan.
Shame on Slate. As for Ms. Lutz, you ought to read some serious philosophy and sharpen your monads. Piffle, darling, you’ve written offensive piffle.
Why A Young Man Died In A Nursing Home, A State Away From His Mom
(National Public Radio)
January 17, 2013
MONTGOMERY, ALABAMA– [Excerpt provided by Inclusion Daily Express] Zach Sayne was 25 when he died earlier this month at the place that had been his home for 15 years — a children’s nursing home in Alabama.
But that was too far away, 200 miles too far, for his mother in Georgia. Nola Sayne was trying to bring him back, closer to her home. The story of why she couldn’t reveals the bureaucratic traps, underfunding and lack of choices that plague state Medicaid programs.
We told the story of Nola Sayne and her son Zach in our 2010 series, Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice. One story was about the surprising number of young people — teens and those in their early 20s — living in American nursing homes.
The story explained Nola Sayne’s dilemma and why parents often had no choice about placing their young sons and daughters into nursing homes.
For Nola Sayne it happened 15 years ago when Zach was just 10 and had a feeding tube inserted into his stomach. Zach had cerebral palsy and seizures. He was partly blind and couldn’t talk. No other after-school program would take him.
Entire article:
Why A Young Man Died In A Nursing Home, A State Away From His Mom
http://tinyurl.com/ide0117134
Related:
Home Or Nursing Home: America’s Empty Promise To Give The Elderly And Disabled A Choice
http://www.npr.org/series/131105200/home-or-nursing-home
(Autism Women’s Network)
January 14, 2013
LINCOLN, NEBRASKA– [Excerpt provided by Inclusion Daily Express] I have written about my year in autism self-advocacy. I have a lot to celebrate and a lot to be thankful for. I think 2012 was a year of great accomplishments for our community, despite moments of deep sadness, moments of fear and moments of injustice toward us.
Some days were so sad, many of us could barely keep breathing.
But we did not remain silent.
We did not stop questioning, demanding, petitioning and coming together to respond to those sad and unjust events. Sometimes we joined, or were joined by, other disability communities. And we have many neurotypical allies standing with us.
In 2012 we took the time to celebrate the disabled victims of murder, in response to the media that often chose to ignore their lives. Following one self-advocate’s idea, we organized vigils, because their lives were, like ours is, worth living.
Entire article:
Autism in 2012: What We Have Done (Amy Sequenzia)
http://www.autismwomensnetwork.com/article/autism-2012-what-we-have-done
Quiet Car Rule Making
The National Highway Traffic Safety Administration (NHTSA) has released the long-awaited rule making for the Pedestrian Safety Enhancement Act. This proposed regulation seeks to require hybrid and electric vehicles meet minimum sound emission standards in order to make all pedestrians aware of their presence. The public will have 60 days to comment after the proposed rule is published in the Federal Register which is expected to take place tomorrow.
Link to proposed rulemaking
Click to access Quiet_Vehicles_NPRM.pdf
Link to Fourteen Sample Sounds
http://www.nhtsa.gov/SampleSounds
Article from NHTSA’s web site
U.S. Department of Transportation Proposes New Minimum Sound Requirements for Hybrid and Electric Vehicles
Monday, January 7, 2013
Contact: Karen Aldana, 202-366-9550
Proposal Would Allow All Pedestrians to Detect Vehicles that Do Not Make Sound
WASHINGTON – As required by the bipartisan Pedestrian Safety Enhancement Act of 2010 (PSEA), the U.S. Department of Transportation’s National Highway Traffic Safety Administration (NHTSA) is proposing that hybrid and electric vehicles meet minimum sound standards in order to help make all pedestrians more aware of the approaching vehicles.
“Safety is our highest priority, and this proposal will help keep everyone using our nation’s streets and roadways safe, whether they are motorists, bicyclists or pedestrians, and especially the blind and visually impaired,” said U.S. Transportation Secretary Ray LaHood.
Electric and hybrid vehicles do not rely on traditional gas or diesel-powered engines at low speeds, making them much quieter and their approach difficult to detect. The proposed standard, Federal Motor Vehicle Safety Standard No. 141, would fulfill Congress’ mandate in the Pedestrian Safety Enhancement Act that hybrid and electric vehicles meet minimum sound requirements so that pedestrians are able to detect the presence, direction and location of these vehicles when they are operating at low speeds.
“Our proposal would allow manufacturers the flexibility to design different sounds for different makes and models while still providing an opportunity for pedestrians, bicyclists and the visually impaired to detect and recognize a vehicle and make a decision about whether it is safe to cross the street,” said NHTSA Administrator David Strickland.
The sounds would need to be detectable under a wide range of street noises and other ambient background sounds when the vehicle is traveling under 18 miles per hour. At 18 miles per hour and above, vehicles make sufficient noise to allow pedestrians and bicyclists to detect them without added sound. Each automaker would have a significant range of choices about the sounds it chooses for its vehicles, but the characteristics of those sounds would need to meet certain minimum requirements. In addition, each vehicle of the same make and model would need to emit the same sound or set of sounds.
NHTSA estimates that if this proposal were implemented there would be 2,800 fewer pedestrian and pedalcyclist injuries over the life of each model year of hybrid cars, trucks and vans and low speed vehicles, as compared to vehicles without sound.
NHTSA will send the proposal to the Federal Register today. Upon publication, the public will have 60 days to submit comments on this NHTSA action.
Hoary Alyssum; White-wood Aster; Blue-stemmed Goldenrod; Spreading Jacob’s Ladder…the flowers of my childhood. Anyone can be lonely and satisfied. Blind kid in the tall grass…
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Planet of the Blind 