A history of Down Syndrome

AnselmusRight

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.

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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.

Miles O'Brien on life after losing an arm

Television journalist, Miles O'brien, who lost an arm after an accident, gets ready for his day.


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."

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True cost of war visible in our overwhelmed Veterans' Administration

Army Staff Sgt. Sam Shockley, who was injured in Afghanistan when he stepped on a buried bomb, prepares to work on his balance and on walking with prosthetic legs at Walter Reed National Military Medical Center in Bethesda. Matt McClain/The Washington Post


Army Staff Sgt. Sam Shockley, who was injured in Afghanistan when he stepped on a buried bomb, prepares to work on his balance and on walking with prosthetic legs at Walter Reed National Military Medical Center in Bethesda. Matt McClain/The Washington Post

From the sixth in a 6-part Washington Post series on war and disability: "The longest stretch of fighting in American history is producing disability claims at rates that surpass those of any of the country’s previous wars. Nearly half of Iraq and Afghanistan veterans are filing for these benefits when they leave the military — a flood of claims that has overwhelmed the VA and generated a backlog of 300,000 cases stuck in processing for more than 125 days. Some have languished for more than a year." The flood of claims peaked last year at 611,000.

Rich New Yorkers hire disabled "guides" to Disney World in order to skip lines (according to NY Post, anyway)

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]

This American Life's report on kids and disability claims riddled with factual errors


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 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]

The Media Matters report cites high-quality sources like the GAO throughout, and makes an excellent case for a general retraction of this report by NPR. I hope that they, and Glass, will reconsider their endorsement of this report.

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

How's Your News, Election 2012: developmentally disabled reporters go to GOP and DNC

Developmentally disabled news reporters cover the weird world of the 2012 RNC and DNC. We interview director Arthur Bradford, and backer Matt Stone (South Park, Book of Mormon).

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Deaf man writes that TSA agent mocked him as “F*cking deafie,” then stole his candy, ate it

Update (June 12): The young author of the post alleging mistreatment by the TSA contacted Boing Boing to request that we delete/unpublish this blog post, explaining that he hadn't intended the story to "go viral." He then took down his account from his Tumblr (which, before this widely re-posted item, appears to have been a small personal blog read by a small number of real-world friends). Today, the TSA also published this post at the official TSA blog. Snip: "A close examination of the video during this timeframe indicates that officers working the checkpoint were professional and appropriate with all passengers." The author of the original Tumblr post told Boing Boing he wants privacy.


teaandtheatre, who is deaf, writes about an upsetting incident of "ableist" or "audist" harassment he claims to have received from the TSA, while going through a screening at the Louisville, Kentucky airport.

He explains that he was returning home from the National Association for the Deaf's biennial conference, with friends who'd attended the same event for deaf rights advocacy. He writes on Tumblr that he wrote the post as a kind of heads-up for other deaf folks, but it has gone viral outside of that community. Snip:

While I was going through the TSA, some of them started laughing in my direction. I thought it might’ve been someone behind me, but I found out otherwise.

They went through my bag (for no reason), and found a couple bags of candy I brought. I was told I wasn’t allowed to fly with that (wtf? I’ve flown with food before — these were even sealed still because I brought them right in the airport). I was then asked if I would like to donate the candy “To the USO”. Since I know the airport there has an Air National Guard base, and I figured it would go to the soldiers, I (annoyed) said sure, why not?

The guards, as I was getting scanned, started eating the candy they just told me was for the soldiers. In front of me, still laughing at me (very clearly now). One of them asked why they were laughing, and one of them came up to me, pointed at my shirt, laughed at me and said, “Fucking deafie”. The Louisville TSA called me a “fucking deafie” and laughed at me because I was deaf, and they expected wouldn’t say anything back (or wouldn’t hear them). Make no bones about it — she was facing me and I read her lips. There was no mistake. I would later find out that they had called at least 4 other individuals the same thing.

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TSA agents harass 7-year-old girl with cerebral palsy and developmental disability

The Transportation Security Administration launched the “TSA Cares” program to assist disabled fliers just four months ago, but a story making the rounds today proves that the TSA definitely does not. The Frank family was traveling from New York City's JFK airport to Florida, and were abruptly pulled aside after a dispute over how their 7-year-old daughter Dina was screened. The child is developmentally disabled and has cerebral palsy. She walks with crutches and leg braces.

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"I'm proud of you," deaf man signs to Obama in ASL. "Thank you," president signs back.

[Video Link] From H. Hoover at Distriction blog, a little anecdote about a cool interaction that Stephon, a young man who was "born deaf and justifiably proud," had with the president at a recent event:

Stephon stood just a few feet away from Barack Obama. The president, busy shaking hands, looked right at him. “It was like he was waiting for me to say something,” he said later.

So the 26-year-old Prince George’s Community College student took his cue and spoke to President Obama in his first language: American Sign Language. “I am proud of you,” Stephon signed. The president, almost involuntary, instinctively, immediately signed back.

“Thank you,” Obama replied.

The whole story is a nice little read.

This has nothing to do with the neat story behind this video, but I've always wondered: is being bald and steely-eyed a requirement for Secret Service agents? I mean, is it in the job description? And if they're not already bald, do they make them shave their heads? Because it seems like every one I've seen in real life, and in this video, is a steely-eyed bald guy. Someone please get back to me on that. Thanks.

(via Steve Silberman)

Inside Kabul: landmine survivor aid activist live-blogs from lockdown in Afghanistan

I've known of James Hathaway and the NGO he co-founded, Clear Path International, for many years. They do great work to help civilian survivors of landmine blasts, people who now have disabling injuries, live better lives through medical care, education, improved mobility and access, and other forms of support. Clear Path originally focused their efforts in Vietnam, but have since expended into other conflict/post-conflict zones including Cambodia and Afghanistan.

Afghanistan, James says, is “by far our largest project,” with work ongoing in 19 of the country's 34 provinces. James returned to Kabul to work with the CPI team there, just as the security situation abruptly escalated to a new level of crisis.

James and crew are spending a lot of time with bulletproof vests on, in safe rooms, and surrounded by very heavily armed security guys. James is blogging daily, and explains why he's there and what they're trying to accomplish in the following account, republished here in entirety with permission.

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29-year-old woman born deaf hears herself for the first time

[Video Link] sloanchurman says: “I was born deaf and 8 weeks ago I received a hearing implant. This is the video of them turning it on and me hearing myself for the first time :)” (Via Sean Bonner)

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American money is very hard on blind people

Tommy Edison, the blind film critic last featured here demonstrating an "accessible" ATM explains the inaccessible design of US money and the difficulties it presents for people with vision problems.

Blind person uses ATM for first time

This video shows the process that a blind man goes through in using a particular ATM for the first time; the machine he selects is one that has a ton of assistive features that are aimed at making use easier for visually impaired people, but it's apparent that this guy -- blind film critic Tommy Edison -- has to go through a heroic effort to get through a technological ritual that most of us take for granted. I also felt for Edison in light of the advice to shield your PIN from potential hidden cameras, a task that seems to add transcendent difficulty to an already tricky task.

Blind Man vs. The ATM - Tommy Edison (via Consumerist)

Hero of quadroplegic game controllers to retire, replacement needed

Ed sez, "With a retired Bozeman engineer's 70th birthday approaching, disabled gamers say they fear there will be no one to replace Yankelevitz, who has sustained quadriplegic game controllers for 30 years almost entirely by himself. The retired aerospace engineer hand makes the controllers with custom parts in his Montana workshop, offering them at a price just enough to cover parts."

Developmentally disabled man harrassed by TSA at Detroit airport

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!)