Planet of the Blind

The history of disability is packed with alarming ideas and misconceptions. The news that the Diagnostic and Statistical Manual, DSM-5 has dropped Aspergers Syndrome from its formal classification of psychiatric conditions is cause for considerable fear among “aspie” advocates because so little is still known about it, and the decision to place Aspergers under the umbrella of autism spectrum disorders poses the possibility that people in need of rehabilitation services and educational assistance will now be given short shrift.

Back in the time of FDR Aspergers was cheerfully called “Little Professor Syndrome” by psychiatrists who thought the condition was endearing since those who have it are wonderfuly acquisitive. People with Aspergers tend to have a keen command of facts and a concomitant inability to connect with others. Little Professor.

Some years ago I spoke with a well regarded psychiatrist in Columbus, Ohio who, by means of the promise of anonymity affirmed for me that psychiatry is not a science, adding that “the worst people, the lowliest medical students go into psychiatry”.  If this seems pejoratively subjective let’s consider the DSM-5 more broadly, for it purports to be a scientific document when in fact it lacks research credibility on many levels. Dr. Allen Frances wrote on Psychology Today’s blog about the grievous research errors that have been rather willfully incorporated into the DSM-5:

The DSM-5 Task Force originally planned two sets of field trials, the second of which was meant to provide quality control to correct whatever weaknesses would be exposed in the first. But along the way, the field testing got far behind its schedule and the quality control step was quietly cancelled. No explanation was ever offered, but it seemed likely that DSM 5 was being rushed to press so that APA could reap publishing profits.

 What is more troubling is the following:

Dr. David Kupfer now wants us to believe that the recently published results of the DSM-5 field-testing somehow serve to justify the inclusion in DSM 5 of extremely controversial and much feared changes. This is a terribly misleading claim. Independent of all the other criticisms of DSM-5 (and there are plenty), the poor results of the field trials must have been a major disappointment to the Task Force. Dr Kupfer is now making a desperate attempt to salvage the failed project by putting an unrealistically positive spin on its results.

Our forty-year experience in reliability testing for DSM-II, the RDC, DSM-III. and DSM-IV makes clear what are acceptable and what are unacceptable kappa levels. There is no way of avoiding or cloaking the stark and troubling fact that the DSM-5 field trials produced remarkably low kappas – harking back to the bad old days of DSM-II.

http://1boringoldman.com/index.php/2012/10/31/humility-2/

Equally disturbing, three of the eight diagnoses tested at multiple centers had widely divergent kappa values at the different sites – hardly a vote for their reliability. Even worse, two major diagnostic categories [Major

Depressive Disorder and Generalized Anxiety Disorder] performed terribly, in a range that is clearly unacceptable by anybody’s standard.

http://1boringoldman.com/index.php/2012/10/31/but-this-is-ridiculous/

Dr. Kupfer has been forced to drastically lower our expectations in an effort to somehow justify the remarkably poor and scattered DSM-5 kappa results. There is, in fact, only one possible explanation for the results- the DSM-5 field trials were poorly designed and incompetently administered. Scientific integrity requires owning up to the defects of the study, rather than asking us to deviate from historical standards of what is considered acceptable reliability. It is not cricket to lower the target kappas after the study results fail to meet reasonable expectations.

Diagnostic agreement is the bedrock of our system -a non-negotiable bottom line. The simple truth is that by historical standards, the DSM-5 field trials did not pass muster. Dr Kupfer can’t expect to turn this sow’s ear into a silk purse.”

 

**

It’s important to remember that there are lives in the balance. The decision of Dr. Kupfer and his team to eliminate Aspergers from the manual while shoe horning several disorders together is as faulty as anything we might have seen some 70 years ago in the psychiatric field.

 

 

 

By Andrea Scarpino

 

So many of
us lonely.

First snow:
a sudden brightening. The sky no longer gloomy grays, the air, a new freshness.

Open mic in
Marquette: a man walks to the front of the room, says he wants to recite a poem.
Then begins his life story, growing up on a farm, pumping well water, taking
care of his younger brother. Then Vietnam, a soldier he killed who was trying
to hide behind a tree with only a few pieces of grass as camouflage. How he
earned his first ribbon for bravery. Then his work in the circus, in the prison
system. For thirty minutes, he tells his life story. Not a poem. Something more
like loneliness.

Finally,
someone cuts in, asks the man to let other people speak.

“I guess you
can tell I’m pretty lonely,” he says, walking slowly back to his seat. “If
there’s time at the end, maybe I can get to my poem?”

Time at the
end: his brother’s daughter who died as an infant and comes to him in the
night, his grandfather’s friendship with Attila the Hun, how together they
conquered India. He talks and talks, no poem in sight.

My head
swirls trying to keep up. The uncertainty in his walk, his mismatched clothes.
I run through a list of possible diagnoses : dementia, PTSD, some sort of
psychological break with reality. Then chide myself: loneliness. Who doesn’t
want a moment on stage? A moment to tell our life bigger, grander, more
important than it ever will be? Who doesn’t want an audience to listen, nod
their head, tell us we’re meaningful?

I stare at
the darkened window reflecting his gestures, the jerk of his head, his lean on
the podium. First snow: a loneliness. So many of us afraid. 

Blog like you mean it. This morning I’m shouting out to Ari N and DJ and all my friends who daily take up the fight for the rights of autists. I love you all.

This morning I’m thinking of the Blinded Veterans of America. Their organization has done more for the rights of the blind than many other outfits. I love you all.

 

Two discretely shouted moments of universal love on a grey morning. And nor I must walk my guide dog.

 

Senate Majority Leader Reid has announced that he will be bringing the Convention on the Rights of Persons with Disabilities to the Senate floor tomorrow to move closer to ratification! The community must raise its voice on Tuesday!

 

Today, Senator Lee, former Senator Rick Santorum, and Michael Farris from the Home School Legal Defense Association held a press conference and falsely announced that they have the votes to defeat us. Santorum then headed to an interview with Piers Morgan to oppose the treaty as well. They continue to misrepresent U.S. ratification of the treaty – WE need to be the community force that counters this effort!

We must tell Senator Reid and the rest of the U.S. Senate that we support the CRPD as reported by the Senate Foreign Relations Committee with no additional amendments! The reservations, understandings, and declarations added to the treaty package were carefully crafted to address all the issues raised by the opposition. WE support the RUDS and NO NEW AMENDMENTS!

This is a DISABILITY TREATY . . . and the DISABILITY COMMUNITY is its voice! We need you to raise your voice! (And send this message to at least two friends to raise their voices!)

 

Please call Senator Reid and say THANK YOU for taking up CRPD. Call: (202) 224-3542

Please call your Senators with the message: Vote YES on the CRPD as reported!

Call, email, tweet, and raise their voices! Helpful links:

Contact Senators here:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

 

Find Senator Twitter IDs here:

Click to access US%20Senators%20List%20of%20Twitter%20ID.pdf

 

The time has come for us all to join together to support the equal access and justice for all people with disabilities . . . your call matters . . . your voice matters . . . YOU MATTER! Let the Senate know it!

Each day I live a little, I don’t live a lot.

The crow on the electric line

has all the time he needs.

Why then do I weep in the face of winter?

 

 

By Andrea Scarpino

Tis the Season—

 

for indulgence, for batches and batches of cookies, fruit pies, for casseroles, cream-filled drinks, plates of meat, for holiday dinners, holiday parties, marathon holiday cooking sessions. 

 

And I am a vegan trying to avoid sugar and grains. 

 

My diet is the only thing that has quelled twenty-five years of pain—pain that began when I was 10 years old with Reflex Sympathetic Dystrophy, that continued even after my RSD was cured as crippling breast pain and an encyclopedia of hormonal problems otherwise unspecified. Since I was 10 years old, I’ve struggled with pain, seen specialists in six states, tried a litany of treatment protocols, exhausted every one. And then, desperate, speaking with specialists about mastectomy—removal of my breasts to remove the site of my constant pain, what seemed my only option—I came across Kris Carr.

 

February. A week at the Mayo Clinic in Minnesota. Test after test came back negative—all hormones within normal range—and yet, I was suffering through three months of daily, crippling pain in my breasts. I cried in my hotel room each night, discouraged, frustrated, overwhelmed. Midway through the week, sitting on the carpeted floor of the Barnes and Noble across from my hotel, I picked through stacks and stacks of health-related books. And there were Kris Carr’s: Crazy Sexy Diet, Crazy Sexy Cancer Survivor. A woman with dozens of cancerous tumors in her liver and lungs advocating going vegan, drinking green vegetable juices, meditating. 

 

The last day at the Mayo Clinic, the physician coordinating my visit with the breast center, gynecology, pain medicine, and internal medicine said, “We don’t know what’s going on.” The best of medicine: “We really don’t understand hormones.” I walked straight to the bookstore and bought Crazy Sexy Diet. 

 

Thanksgiving week: eight months without pain, the longest I have been continuously pain-free since my breast pain began, and even further back, since RSD. No meat, no dairy, no sugar, no grain: no pain. A plethora of vegetables: bright salads, freshly pressed green juices, nuts and seeds. Eight months without pain, longer than with any other treatment protocol. More than the Mayo Clinic offered.

 

But here I am, in the midst of holiday eating season, struggling with how to celebrate with friends without compromising my newly found health. I’m used to telling dinner party hosts that I’m vegetarian or vegan—but to add that I don’t eat sugar or grains? And I was raised to be gracious to a fault, never inconvenience anyone, never cause a fuss (My mother’s mantra: “No fuss”). 

 

For comparison: when I was a teenager, my mother bought a new puppy that she took everywhere. One afternoon when we returned to the car after a quick shopping trip, we found her dog had pooped in the car, stepped in his poop, and tracked it all over everything: the car seats, the dashboard, every window. The entire inside of the car was covered in dog poop. My mother quickly assessed the situation—and told me to get in the car. 

 

“Don’t make a fuss,” she said. I told her I would run back to the store and ask for paper towels. 

 

“Don’t make a fuss,” she repeated, steely eyed. “Get. In. The. Car.” 

 

And I did. And we drove home in silence, sitting on dog poop. Windows down. 

 

So here I am in the midst of holiday eating season, struggling with making a fuss, with how much to request of dinner hosts, struggling with how much food to bring before I’m seen as rude—one vegetable-based dish is a kind contribution, but three? And what if I only eat what I’ve brought? And how do I explain my dietary needs? I’m a vegan with diabetes and Celiac Disease? 

 

The truth, as best as I can parse it: my decades of debilitating breast pain and menstrual issues was caused by a combination of genes and diet, a possible genetic predisposition to pain combined with fluctuating menstrual hormones and insulin spikes from high-carbohydrate foods like bread and sugar. And add to the equation the chemical overload of our environment. Maybe. Who knows? Certainly not the dozens of specialists I’ve seen. 

 

The truth, as best as I can parse it: eating mostly vegetables has changed my health, my life, my daily experience on this planet. Thanks to Kris Carr’s book, to dramatically changing my diet, I’ve had eight months without pain. And I don’t want to go back. Which means I have to figure out ways to survive this season, to spend time with people I love without feeling like an inconvenience, to advocate for my needs without causing a fuss. And maybe to introduce some veggie-based dishes to those I love. Because eating mostly vegetables is absolutely delicious. 

 

 

I remember the first time I went to Woolworth’s by myself. Like all genuine art, Woolworth’s belongs to a specific time. The smell of the oiled floors, the odor of fabrics, cheap tonics, popcorn, and fatigue. The old store, given a voice, would have sung the blues–or moaned. And there were men and women who appeared to have been sleeping, but were now moving again and some of them were simply there because it was an alternative and some of the men were veterans of the first world war and some of them had shell shock. And there was a wall of birds, little tokens of utopian dreams that no one ever bought. I always wanted to unlock the birds but there was a florid woman in charge of that department and rumor had it she’d had a lobotomy and all I knew as an eight year old was this meant there was something terrifying about her brain.  One had to keep away from her or something sinister would happen. But the five and dime could bring us good cheer with its heart shaped sunglasses, its concave mannequins, its bake light radio playing Connie Francis. Up and down the aisles I went with my calculations and visions of riches. 

A real service dog named Hercules will be featured in Episode 43 of Sesame Street, which will air on November 30, 2012. Hercules will be helping a new Sesame Street Muppet character named Brandies learn how to be a service dog. Brandies is a yellow Labrador retriever Muppet who is looking for a job. After unsuccessful attempts at working at a laundromat and sweeping floors, Brandies learns about being a service dog. Brandies starts training by learning how to open drawers, pick things up, and turn on light switches. After training for weeks, Brandies becomes an official service dog and meets Liliana, the person he will be helping. Liliana is a wheelchair user and Brandies helps her by picking up her bag when it drops and opening doors. The organization Canine Companions for Independence worked with Sesame Street to create this episode to increase awareness of service dogs that help people with disabilities.

Full Story: Canine Companions for Independence, Press Release, Sesame Street Episode Launches New Service Dog Muppet, Canine Companions for Independence Pressroom, available at 
http://www.cci.org/site/apps/nlnet/content2.aspx?c=cdKGIRNqEmG&b=4127877&ct=12188571

And back in the November night
Crows walk on wires, talk dream-wise…

(Intellectual Property Watch)
November 19, 2012

GENEVA, SWITZERLAND– [Excerpt provided by Inclusion Daily Express] Visually impaired and print-disabled persons have high expectations for the results of this week’s negotiations on copyright exceptions and limitations at the World Intellectual Property Organization, WIPO Director General Francis Gurry told the opening of a committee meeting today.

The 25th session of the WIPO Standing Committee on Copyright and Related Rights is taking place from 19-23 November. The high profile subject of this week’s meeting is a draft text of an instrument providing limitations and exceptions to copyright for blind/visually impaired persons and persons with print disabilities.

Gurry said meeting the expectations of the visually impaired community and the print disabled depends on delegates. He said he made a plea to delegates “to rise sufficiently above your national positions to see the common good that can be achieved for the international community through the conclusion of a new treaty in this area and to see the improvement that you are able to actually deliver for the visually impaired and the print disabled.”

Also on this week’s agenda are three other working documents delegates are mandated to advance: a draft treaty text on the protection of broadcasting organisations, a working document on exceptions and limitations for libraries and archives, and a working document on limitations and exceptions for educational, teaching and research institutions and persons with other disabilities.

Entire article:
WIPO Director Pleads With Countries To Advance Treaty For Visually Impaired
http://tinyurl.com/ide1119122a
Related:
Standing Committee on Copyright and Related Rights : Twenty-Fifth Session (World Intellectual Property Organization)
http://www.wipo.int/meetings/en/details.jsp?meeting_id=25024