A couple weeks ago, I listened to Unfit for Work: The startling rise of disability in America an interesting program on the supposed rise in disability claims produced by Planet Money and aired on This American Life (where I heard it). The program raised some interesting points about the inaccessibility of certain kinds of less-physical jobs to large numbers of people, but it also aired a lot of supposed facts about the way that parents and teachers conspired to create and perpetuate disability classifications for kids.

Many of the claims in both half of the report are debatable, and many, many more and simply not true. A Media Matters report called This American Life Features Error-Riddled Story On Disability And Children systematically debunks many of the claims in the story, which NPR has modified slightly since posting online (though NPR and Ira Glass continue to stand behind the story).

FACT: Medical Evidence From Qualified Professionals Is Required To Determine Eligibility

Government Accountability Office: "Examiners Rely On A Combination Of Key Medical And Nonmedical Information Sources." A Government Accountability Office report found that disability determination services (DDS) examiners determined a child's medical eligibility for benefits based on a combination of school records and medical records, and that if medical records in particular were not available, they were able to order consultative exams to review medical evidence:

DDS examiners rely on a combination of key medical and nonmedical information sources -- such as medical records, effects of prescribed medications, school records, and teacher and parent assessments -- in determining a child's medical eligibility for benefits. Several DDS officials we interviewed said that when making a determination, they consider the totality of information related to the child's impairments, rather than one piece of information in isolation. Based on our case file review, we estimate that examiners generally cited four to five information sources as support for their decisions in fiscal year 2010 for the three most prevalent mental impairments.

[...]

If such evidence is not available or is inconclusive, DDS examiners may purchase a consultative exam to provide additional medical evidence and help them establish the severity of a child's impairment. [Government Accountability Office, 6/26/12]

This American Life Features Error-Riddled Story On Disability And Children (via Naked Capitalism)

The (awful and not usually very trustworthy) New York Post reports that rich New Yorkers pay thousands of dollars to an Orlando area service that rents out disabled people to accompany them to Walt Disney World in order to jump the lines. The article says that there's a word-of-mouth underground in New York's priciest private schools, in which parents pass on the details of the service, which is allegedly called Dream Tours Florida:

Passing around the rogue guide service’s phone number recently became a shameless ritual among Manhattan’s private-school set during spring break. The service asks who referred you before they even take your call.

“It’s insider knowledge that very few have and share carefully,” said social anthropologist Dr. Wednesday Martin, who caught wind of the underground network while doing research for her upcoming book “Primates of Park Avenue.”

“Who wants a speed pass when you can use your black-market handicapped guide to circumvent the lines all together?” she said.

“So when you’re doing it, you’re affirming that you are one of the privileged insiders who has and shares this information.”

Rich Manhattan moms hire handicapped tour guides so kids can cut lines at Disney World [Tara Palmeri/New York Post]

Television journalist Miles O'Brien gets ready for his day. (Photo: Christopher Anderson/Magnum Photos/New York Magazine)

While on assignment in the Philippines in February, reporter Miles O’Brien had an accident and lost his left arm. In the weeks that followed, he learned that every movement, no matter how small, requires rethinking. In this week's New York Magazine, he describes his "Life, After."

Denial is powerful. It can be a crucial coping tool when experiencing loss or trauma, but it also can unmoor you from reality. From the time I lost most of my left arm in February, I was living in that parallel universe, one where I’d power through, barely acknowledging the amputation—until I went for a run on the sunny afternoon of April 6.

It was nothing more than a slightly uneven sidewalk that took me down. No problem for a runner with two arms. In fact, this particular sidewalk is right behind my home, and I had negotiated it uneventfully for years. But here are two things you need to know about life after an arm amputation: First, your center of gravity changes dramatically when you are suddenly eight pounds lighter on one side of your body. Second, while my arm may be missing physically, it is there, just as it always has been, in my mind’s eye. I can feel every digit. I can even feel the watch that was always strapped to my left wrist. When I tripped, I reached reflexively to break my very real fall with my completely imaginary left hand. My fall was instead broken by my nose, and my nose was broken by my fall.

Lying on that sidewalk, moaning in pain, I reached the end of Denial River and flowed into the Sea of Doubt. It finally dawned on me in that instant that I was, indeed, handicapped. That may not be the term of choice these days—“differently abled” or “physically challenged” may be de rigueur—but as I touched my bloody face, feeling embedded chips of concrete in the wounds, “handicapped” sure seemed to fit.

The woman I was passing on the sidewalk when I fell took one look at me and cried out in panic to her husband: “My God, what’s happened to his arm?” “It’s gone,” I said. “But don’t worry, that didn’t happen today.”

Read the entire essay. It's beautiful.

[Disclosure: I am the girlfriend mentioned in the article.]

From their inclusion in 16th-century paintings to their roles in famous families (including, probably, Darwin's), people with Down Syndrome are part of history.

At the Down Wit Dat blog, there's a 8-part (with more on the way) feature that provides some much-needed inclusion to people who are usually just a footnote to somebody else's history. Naturally, the series delves into ideas like eugenics and the institutionalization of differently abled Americans. But, even there, the story is centered on people with Down Syndrome and, as such, it offers a perspective and information that you likely haven't heard before. Great stuff.

Here's an excerpt about the short life of Charles Waring Darwin, the youngest child of the Charles Darwin you know. Based off historical records and the surviving photograph that you can see here, historians suspect that he had Down Syndrome.

Henrietta, one of his daughters, had this to say about Charles Waring in her book "Emma Darwin, A century of family letters...":

"The poor little baby was born without its full share of intelligence. Both my father and mother were infinitely tender towards him..."

Charles Darwin himself had this to say about his youngest child:

“He was small for his age and backward in walking and talking.... He was of a remarkable sweet, placid and joyful disposition, but had not high spirits.... He often made strange grimaces and shivered, when excited.... He would lie for a long time placidly on my lap looking with a steady and pleased expression at my face... making nice little bubbling noises as I moved his chin.”

Looking at the photograph of the then 45 year old Emma and her newborn son, it is not hard to see what appears to be a "weakened" bridge to the nose and quite possibly be epicanthal folds. However, the photo is extremely grainy and we will never know for sure. Charles Waring Darwin passed away from Scarlet fever at 19 months of age, never having learned to walk or talk. Darwin Sr. recorded in his journal that day: "Poor Dear Baby Died." He was unable to attend the first reading and publication of his theory of Natural Selection due to the illness and death of his youngest son.

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Cecily is a hen who was born with a bum leg due to a damaged tendon. The options were to put her down or make her a new leg. Her owner, Andrea Martin, who rescues chickens in Clinton, MA, opted to pay $2,500 to have the hen's leg replaced with a new 3D-printed version. (more…)

Mad Max: Fury Road has attracted praise for its deft handling of some of the themes that Hollywood normally gets very, very wrong. The way that women take charge, for example, the Gamergate crowd had the rare perspicacity to realize that Furiosa was a new, significant stride in the evolution of female action protagonists. (more…)

Simon Parkin has done an interesting profile at the Guardian of players with disabilities who have found a community—and a supplemental income—via online streaming service Twitch. He interviews Mackenzie, a young woman with severe epilepsy who plays games online for a select audience she is careful about getting to know.

Like Mackenzie, who sees her work as partially a way to promote understanding of her condition, streamer Stacey Rebecca plays the competitive digital card game Hearthstone, and shares some of her challenges with her fans:

Only a relative handful of disabled streamers earn their living from the service, but as well as providing a supplemental income, Twitch offers a support community. “Twitch gives me that feeling of being less isolated,” says Stacey Rebecca. “I have a lot of regulars, and it’s nice to have that kind of friendly group that I can essentially hang out with each day without having to leave the house. And because I’ve been open about my mental health problems, I attract a lot of viewers who are experiencing anxiety. It helps us both feel less isolated. It’s a mutually beneficial arrangement.”

The massive and growing online streaming community also has demonstrated the power to be a force for charitable causes, claiming to have raised more than $10 million for charities in 2014. On her own, Stacey Rebecca raised £6,500 for mental health charity Mind.

A man with physical disabilities was forced to crawled off a plane at Reagan National Airport in Arlington VA, when United Airlines failed to provide him with help disembarking.

(more…)

If I could walk, I wouldn’t have missed my connection.

If I could walk, I wouldn’t have been left onboard, twice, after everyone else disembarked.

If I could walk, I wouldn’t have my feet crushed, dragged under a narrow chair, as untrained staff pulled me off a plane.

“We'll still have someone contact you," came the message, at last, after two trips in travel hell. "We don't want to lose your business and hope you won't give up on us.”

But I have given up on American Airlines. They have lost my business. I urge anybody who travels with a disability to consider any other airline.

As a space and aviation writer, I never look forward to writing about a bad experience in the air. Those who use wheelchairs to get around know how unfriendly our friendly skies can become. But I never expected an experience as unpleasant as the one given to me by American Airlines.

(more…)

I had to hear it from Wil Wheaton.

Talking to the creators of open-world hit game Uncharted on his show, Conversations with Creators, the geek legend praised a feature that helps you guide protagonist Nathan Drake around its vast, sprawling environment: “And I love there's that subtle yellow path," he said. "I never got lost!”

When I heard him, my eyes widened. I'd finished all three games in the series and never had any help from any “yellow path”! Do you have any idea how many hours I wasted wandering off and backtracking? Those are hours I'll never get back, Naughty Dog!

Why didn't I know about the yellow path? Because I never saw it. I was born with an extremely rare eye condition known as achromatopsia nystagmus.

It only affects 1 in 33,000 people. What it breaks down to is:

• near-sightedness
• no depth perception
• extreme light-sensitivity
• color-blindness

In brief, I have to look very closely at things in order to see them, and I only see black and white.¹

At one point during a game, I stood atop a mountain crag, a huge chasm in my way. I know from my decades of playing video games that there must be a way to do it—I just can't figure it out. I don't wanna look it up, because I can sense it's a straightforward challenge.

I go this way. I go that way. I try this jump. I try that shimmy across the rocks. Nothing works. The death sequence plays over and over again. It adds up.

My wife wanders into the living room. “Oh, is this Uncharted?” I let her know that it'll be pretty boring, watching me die over and over. She watches for a second. “Are you supposed to go through the red areas?”

My heart sinks. She explains that there's a not-so-subtle spread of red bricks, reddish dirt, and other conspicuous indicators forming a path through the treacherous landscape. She points out one such area. Red is, incidentally, my favorite color. But here, I could barely make it out.

I crossed the chasm.

Uncharted is a fantastic game series; Naughty Dog is not the only offender. Enter sweet, infuriating Assassin's Creed.

Another open-world game series, it favors stealth over Unchartered's spectacular MacGyvering. I love it, but I don't love Eagle Vision, one of the distinctive features of play, often all-but necessary for your character to make progress.

Where I live in LA, the most reliable way for me to make progress is the bus. The bus sucks, because people don't wash, pick fights, and hate being there—and that's just the drivers. But I don't hate the bus as much as I hate Eagle Vision.

Eagle Vision made me nervous from the outset. It's one of those things that, for we disabled, sounds kinda cool, but comes with a sinking feeling that tells you it's just not going to work out.

The tutorial walked me through it: “Press R2 to turn on Eagle Vision. In Eagle Vision, you use your mad assassin observation skills to observe things other people don't notice.” I pressed R2. The tutorial continued: “Notice targets are in red, civilians are in yellow, potential enemies like guards are in blue.”

I dropped the controller.

“Aw, come on!”

It sucks, because my wife bought me this game for my birthday. I can't tell the difference between any of the people that Assassin's Creed has just helpfully color-differentiated for me. Sure, sometimes, the game zooms in on a character to let me know specifically whom I'm after, but the population at-large, the people I'm supposed to know about so I don't kill civilians, or piss off guards? I've no clue.

Fortunately, progress is still possible, though I imagine it's really handy—a fact attested to by the ridiculous number of times I must start over.

Even worse is Resident Evil 4, Capcom's survival horror epic.

It's hands-down among my top-10 favorite gaming experiences thanks to intense visuals, a creepily engaging story, and the satisfaction of shotgunning zombies and evil cultists. But one puzzle in it almost ended my joyful delirium before things had even gotten cooking: the church puzzle.

Early in the game, you're stuck in a church. To get out, you have to match symbols, each of which is—you've guessed it!—one of three different colors. I stared for a second and realized that this would be impossible. To a normally sighted person, it's a simple matter of organizing red, green and blue symbols in an easily-deduced pattern.

Not for me. I gave it an honest try. I guessed. Over and over. I probably spent close to half an hour trying to randomly get it right. Finally, I gave up and looked up the solution, and was back in action.

Solutions

I know what you're thinking. “Okay, Anton. We get it. Gaming while achromat is tough. Did you have any solutions?” Yes. Yes, I do. And the cool thing is that some solutions are so easy, AAA developers will facepalm for having not considered them before. https://www.youtube.com/embed/ObGmrfeZuxs

In the puzzle game Sparkle 2, you shoot colored balls at other colored balls in an attempt to create combinations that pop away before the advancing mass of balls can overwhelm the player. I tried the game fully expecting to fail, but I had a blast because of a simple check-box: “Accessibility.”

Click it, and there are patterns on the balls! I was now matching patterns instead of colors. The developers, 10tons, didn't have to re-invent any wheels or start any revolutions. All they had to do was replace colors with patterns, and their game opened up for me. https://www.youtube.com/embed/bmptTn_4ooc

This technique can't cure all accessibility ills, but just imagine if the church puzzle had given the symbols texture as well as color? I would've had a fair chance. Admittedly, such a technique wouldn't work as well with Uncharted or Assassin's Creed. But instead of a yellow line, there could be little arrow signs. Or, maybe, a subtle little rumble in the controller when the player's pointed the right way. Nintendo often throws in a help box after you've failed a level a few times: nothing too hand-holdy, but there if you need it.

Assassin's Creed is full of symbols, and more wouldn't hurt, especially if they were optional. Arrows float around pointing to nearby goals and story points, and above characters' heads now and again, so why not have Eagle Vision operate in a similar way? Maybe even give the disabled player the option to make all text and symbols really big so we can't possibly miss them.

None of these solutions would be perfect. But it is possible. It can happen.

1. I've spent my entire childhood, most of my teen years, and some of my adulthood going to eye doctors. In the early days, it was to figure out what was wrong with my eyes. More recently, it's to get official sign-off on government forms so I can get my disabled parking placard and other such necessities. I've learned in all these visits that, medically speaking, I only see black and white. I say “medically speaking” because, and I can't explain why this is, I feel like I see some color. While I am sometimes able to identify some colors, I can't distinguish between colors and groups of colors.

Anton A. Hill is a blind writer, lifelong gamer and accessibility advocate.

Meet Saqib, a Microsoft dev in London who lost the use of his eyes at age 7. Here's a neat little profile of his artificial intelligence development work from Microsoft Cognitive Services:

(more…)

IMGURian Ryan S. Miller posted this wonderful series of images: “Here is Jeremy's Costumer this year...The Ghostbusters Ecto-1!”

“Every year we've tried to step up the scale of the costume builds we do for Jeremy,” Ryan says. “This year we put it to a vote and our friends choose the Ghostbusters Ecto-1!”

Check it out in action, below.

https://youtu.be/nlilYapDsNA

Nearly 250 million people in the world have impaired vision. Oxsight is developing augmented reality glasses that could supplement or even replace canes and seeing eye dogs for many. (more…)

1887's Appleton's illustrated hand-book of American winter resorts for tourists and invalids is a whirlwind tour through all the places you can go and die of consumption in the America of yesteryear:

Out west in scenic California the land and times were much, much different than today. Appleton's guide takes visitors on a botanical tour of "cacti of the most curious sort," and it also explains why I saw so many Eucalyptus trees while living there in 2000-2004: "But the people plant a little shoot of the Australian blue-gum (Eucalyptus globulus), and in two years it becomes a shade-tree 15 or 20 feet high." Fashion and comfort were obviously not commodities in the near horizon if Eucalyptus shade-providing trees were the amenities.

Be sure to head north to Santa Barbara and buy a horse for only $20 so you can tour the beaches. Cure your rheumatism at the Hot Sulphur Springs with sulphureted hydrogen, iron, aluminum, and potash. The dry air the guides associated with relief for consumptive illnesses was and is the same dry air responsible for horrendous wildfires that we see in the news every summer.

Appleton's illustrated hand-book of American winter resorts for tourists and invalids

(Thanks, ButIfAndThat, via Submitterator!)

Jamie Love sez, "On April 15, 2011, the European Union participated in informal negotiations on the World Intellectual Property Organization treaty for the blind. The meeting was held at the US Embassy in Geneva. The EU proposed a 3 to 5 year delay in even considering a treaty. The US position is reportedly quite similar to the EU. The URL links to the text of the EU proposal, and provides additional context."

The combination of the soft recommendation and the monitoring and delay in action advocated by the European Commission and the USPTO is widely seen as a face saving way for the Obama Administration and the European Commission to kill the treaty, or at least to delay it so long its proponents can no longer maintain their advocacy efforts.

At this point, advocates of the treaty will be looking for help in changing the positions of the European Commission and the US government -- the two groups now blocking action on the treaty.

* Within the US government, the USPTO head David Kappos and the White House have dug in against the treaty.
* In Europe, the European Parliament has held two large public meetings on the treaty, sent several letters and questions to the Commission, and plans a vote on the treaty proposal.
* The US Congress has yet to show any support for the treaty.

15 April European Union proposal: 3 to 5 year delay in negotiations on a copyright treaty for blind persons

A 26-year-old man in Austria who lost the use of his right hand in a motorcycle accident ten years ago has decided to undergo "elective amputation," after which he will be fitted with a bionic hand controlled by nerve signals from his own arm. German prosthetics company Otto Bock makes the bionic hands; BBC News reports the prosthetics can "pinch and grasp in response to signals from the brain that are picked up by two sensors placed over the skin above nerves in the forearm."

This will be the second such surgery performed by Professor Oskar Aszmann, of Vienna.

A 24-year-old Austrian man named Patrick was the first patient in the world to choose to have his hand amputated, again by Professor Aszmann, and a bionic replacement fitted. He lost the use of his left hand after being electrocuted at work.

More here, and there's video of the bionic hand in use by Patrick, here.

(Thanks, Marguerite // update: also found on Make today, via Phil Torrone)

A doctor reports that his developmentally disabled son was harrassed and traumatized by the Detroit airport TSA screeners, who wanted to investigate the "puffiness" caused by his adult diaper. They man, who is described as having the mental capacity of a two-year-old, also lost a beloved toy (a plastic hammer) because the TSA claimed it could be used as a weapon. The family was on their way to Walt Disney World.

"You have got to be kidding me. I honestly felt that those two agents did not know what they were doing," Mandy told us.

Dr. Mandy claimed they asked Drew to place his feet on the yellow shoe line, something he didn't understand. They proceeded to pat his pants down, questioning the padding which was his adult diapers. When the agents asked Drew to take his hand and rub the front and back of his pants so they could swab it for explosives, his dad stepped in and tried to explain that Drew was mentally challenged.

"They said, 'Please, sir, we know what we're doing,'" Mandy said.

The TSA agents saw Drew holding a six-inch plastic hammer.

"My son carries his ball and his hammer for security. He goes everywhere with (them)," said Mandy.

Dr. David Mandy: Special Needs Son Harassed by TSA at Detroit Metropolitan Airport

(Thanks, lizditz!)