Disability Futures

Language weak, but point is strong.

http://goo.gl/1P3dL

Heide Pfüetzner calls her 2007 diagnosis with Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease, a "personal catastrophe." Six years later, she's celebrating a personal triumph as an exhibit of her paintings, all created by her mind controlling a computer, makes its debut.

The exhibit, titled "Brain on Fire," opened Friday on Easdale, a small island off the west coast of Scotland. Visitors to the Easdale Island Hall there will see vibrantly colored digital paintings created by the paralyzed artist using a computer program that lets her control digital brushes, shapes, and colors by concentrating on specific points on the screen.

"For the first time, this project gives me the opportunity to show the world that the ALS has not been the end of my life," Pfüetzner says on the Startnext crowdfunding page where she exceeded her $6,500 goal for mounting an exhibit in Easdale. Pfüetzner's daughter lives on the island; the longtime painter visited often before her illness and considers it one of her favorite destinations.

Thanks and a hat tip to Chuck.

http://goo.gl/Gdde2

This fall, Northern Illinois University is offering its first open online course, “Perspectives on Disability,” led by College of Health and Human Sciences professor Greg Long, a Presidential Teaching Professor in the School of Allied Health and Communicative Disorders. The 10-week experience is a streamlined version of the for-credit AHRS 200, a general education course entitled, “Disability in Society.”

The massive open online course (MOOC) is designed to raise awareness and increase knowledge about disability. The program is available to nearly all learners ranging from middle school students through adults.

Along with Punk Syndrome, we are seeing the birth of a new dimension in modern music.

http://goo.gl/oh0no

The group is made up of three young men; Luke Steels, 17, on electric guitar and bass, Jack Beavan-Duggan, 18, on electric guitar, and Saul Zur-Szpiro, 20, on the drums. They all have their unique issues that they deal with, perhaps Saul more than most. While he is considered to have classic autism, he can't see, dress or feed himself, but he is the drummer. He is an auditory learner and can pick up on things after he hears them once and he just knows them. Being with the group, rehearsing at least once a week, has brought him something to look forward to and have an expectation to meet.

The band says that it's not about getting a sympathy vote, they love playing music so they will. The group is defying odds all around since autism, in general, is a social and neurological disorder. It's their disabilities that prevent them from understand some of the harsher criticisms that some are bound to lob at them.

http://goo.gl/btbNR

A 1932 New York Times Magazine profile of the then-Governor of New York described how, at his Hyde Park home, he “wheels around in his chair.” A TIME article from February 1, 1932 said that swimming and exercise ”have made it possible for the Governor to walk 100 ft or so with braces and canes. When standing at crowded public functions, he still clings precautiously to a friend’s arm.” Before his inauguration as President in 1933, TIME noted, “Because of the President-elect’s lameness, short ramps will replace steps at the side door of the executive offices leading to the White House.” And a TIME article from December 17, 1934, described a scene in which ”bodyguard Gus Gennerich helped the President into his wheel chair, rolled him the length of the West colonnade to the new White House offices.” Another profile, this one in the New Yorker in 1934, stated that “he is almost always pushed to the west end of the White House in a small wheelchair.” Seven years later, on January 20, 1941, LIFE magazine noted that “by 11 o’clock he is up, dressed and on his way in a wheel chair down the long passageway to his office…” (Not that it slowed him down in any way. The headline for the article was “Roosevelt: From Breakfast in Bed to Wisecracks at Movies, President Retains His Bounce after Eight Years.”)

http://goo.gl/wnD6e

The poster reported on an open-label trial run by the Royal Free London NHS Foundation Trust at two sites in the UK and Ireland and which included data from 21 patients, five of whom were followed for twelve months. It concluded that nVNS, as delivered by electroCore's hand-held, home-use gammaCore device, appeared to be effective, safe and well-tolerated and useful for both acute and preventive treatment strategies of cluster headaches.

It further found that nVNS should be considered before surgically invasive neuro-stimulation, while the authors concluded that the data strongly supported the need for additional randomised studies of nVNS.

http://goo.gl/JwPSX

The 39-year-old Iowan's symptoms were classic for Complex Regional Pain Syndrome (CRPS). CRPS is caused by an aberrant response to nerve injury that causes constant inflammation of the nerve. Ms. Bagosy lived with the pain for three years. An interventional pain procedure was ineffective. Narcotics were also useless and caused so many side effects one day she simply threw them in the garbage. She says, "For a long time I thought nothing could take away the pain of this disease. Nothing."

But Ms. Bagosy refused to face a lifetime of pain...and the risk of suicide "I've never backed away from a battle," she says. "I knew I had to find an answer."

Then last year Ms. Bagosy learned about a new treatment called Calmare on the web. Italian researchers discovered the treatment in the 1980s when they discovered a synchronized, microprocessor-controlled series of electric potentials delivered to tissue adjacent to pain could relieve the neuropathic pain caused by chemotherapy.

http://goo.gl/4gFjb

Being alive looks different. It becomes all about your emotional connections to those you love.

My mother smiles when she sees her grandchildren, her eyes light up when you walk in the door, she relaxes when the sun shines on her face. These days our family is just about hanging out.

Thanks and a hat tip to Kathryn:

http://goo.gl/1vehh

Web accessibility for people with cognitive disabilities and learning difficulties is one of the most overlooked subtopics of general web accessibility, despite it affecting the largest numbers. A large part of it is that there are so many conditions to understand in this area (far more than say visual or hearing impairments) and a lack of educational information available for learning about it.

In this article we will cover a few of the problems users with cognitive disabilities may have that can affect their ability to use the Web, as well as the things that developers can do to alleviate these problems and things they should avoid. A lot of what is covered will be well known and common sense to many, but is here for completeness.

Interesting idea.

http://goo.gl/GVJsr

Lorm's alphabet places letters on various parts of the hand. Vowels emanate from the fingertips - the thumb's tip is an A, an index finder's end an E. A circle in the palm spells S. And so on.

Since every letter in the Lorm alphabet is represented by a tap or a sweeping motion on some part of the hand, the system lends itself to Bieling's device.

When a deaf-blind person wearing the glove receives a text, motors -- the same kinds that make your cell phone vibrate -- translate words into vibrations spelling out the Lorm alphabet's letters on the dorsal side of the hand. When a deaf-blind person wants to send a message, he need only tap letters onto glove's palm side. The glove then translates the haptic information into digital text, connects through Bluetooth to an iPhone app, and sends the message as a text or an email.

Thanks to Kathryn for this:

http://goo.gl/wJso5

Many stories and events related to people with disabilities never make it into the history books or shared public memories. Familiar concepts and events such as citizenship, work, and wars become more complicated, challenge our assumptions about what counts as history, and transform our connection with each other when viewed from the historical perspective of people with disabilities, America’s largest minority.

Download and print disability history posters