The Boston doctor who studied autism before autism

From The Boston Globe:

In 1846, the Boston physician Samuel Gridley Howe (pictured), already renowned as the founding director of what would become the Perkins School for the Blind, set off across Massachusetts on a mission. The state had tasked him with determining “the condition of the Idiots of the Commonwealth,” their number, and “whether anything can be done in their behalf.” 

Over the course of months, he and other experts would examine hundreds of Massachusetts residents with intellectual disabilities. At the time, most such people were either kept at home for life, or became wards of the state. There were few resources for their education. 

Howe saw children and adults with a huge range of cognitive disabilities. But one finding surprised him in particular: As many as 100 people he studied did not appear to fit common notions of the mentally disabled. They were “easily distracted,” in constant motion. Many were mute, or communicated only by “echolalia” — repeating the words and phrases of others. Yet these patients demonstrated varied, often startling levels of mental acuity. 

One patient, listed as Case 27, had committed to memory more than 200 songs, and “will instantly detect a false note in any of them,” as Howe wrote in his 1848report to the state Legislature. Another, Case 360, could quickly calculate the number of seconds a person had been alive. Others could “perform many simple mathematical operations with a great deal more facility than ordinary persons.” 

These people were widely grouped with others with cognitive disabilities as “idiots.” Recently, however, three writers have identified Howe’s outliers quite differently: They say these Massachusetts residents might have had autism. 

In their new book “In a Different Key: The Story of Autism,” coauthors John Donvan and Caren Zucker claim they’re the first to recognize Howe’s research as an early inquiry into a group of people who could be retrospectively diagnosed on the autism spectrum. In fact, as they note in a related article in the current issue of Smithsonian Magazine, they were inspired by the similar findings of James Trent. Trent, a professor of sociology and social work at Gordon College in Wenham, studies the history and policy around intellectual disability and is the author of a 2012 biography of Howe, “The Manliest Man.” 

These three writers agree that Howe’s identification of this distinct group marks a key contribution to our understanding of autism, a condition that has seized the public’s attention over the past few decades as diagnoses have rapidly risen. Until now, the search for people on the autism spectrum prior to the child psychologist Leo Kanner’s popularization of the term in 1943 have largely focused on speculation about famous historic figures, from Mozart to Einstein. 

In the recent bestseller “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” author Steve Silberman notes several frequently cited cases, such as the feral child known as the “Wild Boy of Aveyron” and the 18th-century Scottish nobleman Hugh Blair. He also recounts the story of the renowned British scientist Henry Cavendish (1731-1810), whose reported eccentricities and “shyness” led the late Oliver Sacks and others to suggest he had Asperger syndrome. 

But Howe’s 19th-century group research offers stronger support that autism has always been present in the human race, according to Donvan: “It challenges the notion that autism’s existence really begins only when the diagnosis was made in the 20th century.” It’s a powerful counterargument, he said, to those who contend that autism is a modern phenomenon — the product of vaccines (a discredited theory) or some undetermined environmental factor. Instead, it offers some hint that the diagnosis rate might have skyrocketed largely because the public and the medical community have become so much more familiar with the telltale signs. 

Howe’s scientific approach is compelling, Donvan said. As a phrenologist — a doctor who believed, as did many in the 19th century, that a person’s intelligence and character traits could be seen in the shape of his skull — Howe was driven by numbers and measurements, the author noted. As a result, “he provided data” — charts, tables — “that was unprecedented, across a broad population.” 

“The whole subject of idiocy is new,” Howe declared in his report to the Legislature. Intrigued by new developments in France, where educators were working for the first time with the mentally disabled, Howe and colleague Samuel B. Woodward (who was superintendent of Worcester State Hospital, which was recognized as pioneering in the humane treatment of people with intellectual disabilities) hoped to convince the public of the benefits of educating the “ineducable.” 

Trent, in his Howe biography, mentioned that the patients Howe and Woodward identified sounded to him like they may have been autistic. “I note that in the book, though I don’t develop it very much,” he said. But it was an earlier book by Trent, “Inventing the Feeble Mind,” that tipped off Donvan. Though that book doesn’t mention autism, it does cite Howe’s overall study. Donvan, intrigued, tracked down the source material—Howe’s report to the Legislature. 

“That’s when my heart sort of stopped,” he said. Some of Howe’s descriptions of his patients, like the one with perfect pitch, sounded to him like proof there were people with autism long before it had a name.“I’ve developed good radar for this,” Donvan said. “We’re hedging a lot, but I’m pretty convinced. These are real, anonymous, not successful people, people who are often left out” of the historic record rather than quirky celebrities, he added — and that, in some ways, makes their stories particularly valuable. 

For those in the autism advocacy community, Howe’s report offers a tantalizing kind of prehistory. Lydia Brown, chairwoman of the Massachusetts Developmental Disabilities Council and a former policy team member of the Autistic Self Advocacy Network, said in an e-mail that it’s “fantastic to learn more about a marginalized community’s history in part by looking to see evidence of our existence in the past. . . I think it’s important and beautiful to look for traces of disabled people — and autistic people in particular.” 

In Howe’s report, the doctor noted that his era’s medical experts had names, lamentable as they may seem today, “to mark the idiot, the fool, the simpleton, the weak-minded,” as well as “the man of common sense, the strong-minded man, the man of talent, and the man of genius.” But the medical community was lacking categories for “the thousand intermediate grades” he and Woodward acknowledged. 

More than 160 years later, one of the categories they observed might have a familiar name. 

Longmore's 'Telethons' book likely to disrupt notions about charitable giving, disabled people

From San Francisco State University:

During the second half of the 20th century, millions of Americans gathered around their televisions during weekend-long, celebrity-studded variety shows that raised billions of dollars for disability-related charities.  

But "Telethons: Spectacle, Disability, and the Business of Charity," a posthumously published book by Paul K. Longmore (pictured), argues that the cultural phenomenon that many dismissed as kitschy was helpful but also heightened stigma for people living with disabilities. Longmore, a professor of history at SF State for almost two decades, created the Institute on Disability in 1996, which at the time was one of the first of its kind. It was later named to memorialize its founder, who died in 2010. 

"'Telethons' teaches us how to think about disability as a social justice issue by offering provocative insights on big business, body image, the U.S. government, popular culture and disability rights activism," said Catherine Kudlick, professor of history and director of the Longmore Institute since 2012.

Longmore himself lived with significant mobility impairments as a result of childhood polio and discovered at a young age that disabled children "being trotted out and used on television did real damage. He set out to understand why by researching and writing this book," Kudlick said. 

Longmore spent two decades researching and writing "Telethons," a book, Kudlick said, he always described as his crowning academic achievement. After his death, Kudlick oversaw its completion. "Paul Longmore was such a towering intellect and forceful activist that several of us put aside our own scholarship to make sure his amazing insights would get out into the world," she said. 

People with disabilities are often misunderstood by the nondisabled, according to Longmore. Kudlick said "Telethons" reveals how certain images of disabled people served big business and do-gooders and influenced ideas about who should provide health care. 

"As Paul illustrates, the telethons raised money largely by presenting disabled children as helpless and pitiful,” Kudlick said. “This infantalization extended to the disabled adults who appeared on the programs and helped to frame all people with disabilities solely as victims of a medical condition and insignificant for American society in general." 

Longmore argues other problems loomed larger: lack of universal health care, inaccessible environments, prejudice and few people with disabilities in positions to tell stories different than those told on telethons. 

As highly popular entertainment, telethons taught Americans how to feel about their bodies, fitness and health and how to interact with people whose bodies did not fit ideals promoted in advertisements, movies and popular culture in general. In addition, Kudlick said telethons "created feel-good moments where nondisabled people could congratulate themselves on their generosity without raising questions about the bigger system that essentially made it necessary for people to beg on TV." 

Only when disabled people later pushed back in public protests did the damage done by telethons become clear. 

Kudlick acknowledges that "Telethons" will most likely provoke controversy by "taking a critical look at a phenomenon that most Americans believe does real good for people who are suffering. People aren't used to thinking about disability as a matter of social justice -- 'Telethons' gives them this new perspective." 

Hollywood Studios claim no law requires captioning of all song lyrics in movies

From The Hollywood Reporter:

With examples of the way music has served such films as Rain Man, Major League and the Guardians of the Galaxy, a group of Hollywood studios on Wednesday asked a federal court to reject a lawsuit that contends Hollywood is violating various laws by refusing to provide more captioning or subtitling of song lyrics. 

Members of the Alexander Graham Bell Association for the Deaf and Hard of Hearing filed the lawsuit in California in October. Their legal action follows a quarter-century of Congressional action, FCC rulemaking and past litigation over a campaign to provide those with hearing disabilities, estimated to be 10 percent of the population, with equal access to creative works. 

This particular lawsuit raises the contention that studios are falsely advertising their products and violating the civil rights of deaf consumers. 

"While the dialogue of some movies or shows are indeed fully subtitled, the practice of not subtitling song/music lyrics is frustratingly widespread," states the complaint. "Movies or shows that do not include the subtitled song/music lyrics withhold the full enjoyment of the movie or show from deaf or hard of hearing consumers. If parts of the movie or show are not captioned or subtitled, then deaf and hard of hearing consumers should be told as such before making a decision to rent or purchase the DVD, theater ticket or streaming." 

After having the case removed to federal court, Disney, Warner Bros., Universal, Paramount, Sony and Buena Vista Home Entertainment have now filed a pair of dismissal motions (see here and here). One is based on California's anti-SLAPP law and figures to have a judge address the First Amendment factor much like what happened when CNN went head-to-head with a deaf group a few years ago. 

The defendants give three reasons why the lawsuit should fail. 

First, they argue there has been no misrepresentation — that while products might be described as "captioned" or "subtitled," the plaintiffs haven't made any suggestion that a reasonable consumer would understand those terms to mean all song lyrics, too.
Take the fact that plaintiffs say that the lack of captioning of song lyrics is "frustratingly widespread." 

"Plaintiffs know from the 'numerous' movies and TV shows they admit watching, and the 'many, many other examples' they describe, that not all song lyrics are captioned or subtitled," the studios respond. "Plaintiffs' admission that they understood the terms 'captioned' and 'subtitled' to mean captioning and subtitling ofsome but not all song lyrics directly undermines their misrepresentation claims." 

This deals with whether Hollywood is falsely advertising or breaching an implied warranty, but doesn't address the civil rights issue. The studios have a different response there.
Express legal obligations to caption came via the Telecommunications Act of 1996 and the 21st Century Communications and Video Accessibility Act of 2010, and once those laws were passed by Congress, the FCC swung into action with an attempt to write regulations and enforce them. But the studios say the standards pertain to broadcast television, not to DVDs, theaters or streaming. 

"Simply put: No law requires the Studios to caption all song lyrics, for all movies and TV shows, across any — much less all — of the distribution channels Plaintiffs target here," states a motion to strike. 

The defendants point to some of the ways they've been captioning, and areas where they haven't. In Rain Man, when Tom Cruise teaches Dustin Hoffman to dance, the background song's name and first line of the lyrics are captioned, but once the characters speak, the captioning focuses on what they are saying instead of the song lyrics. In Major League, when the crowd sings "Wild Thing" upon Charlie Sheen coming out of the bullpen to pitch, the lyrics of the song are captured in subtitles. But when opera plays in the background of a scene inThe Theory of Everything, deaf audiences are told the type of music playing, but not the precise lyrics. 

"The Studios remain free to caption or subtitle some but not all song lyrics, exactly as Plaintiffs admit they have done," say the defendants. "To hold otherwise would improperly limit the Studios' exercise of creative discretion." 

It remains to be seen whether the need for "creative discretion" beats the allegation that studios are providing inferior services to disabled patrons, and thus violating their civil rights. But the studios are also making a third argument based on what happened in a 2006 class-action lawsuit over failure to close caption DVDs. That case was settled, and the agreement is said to have acknowledged that song lyrics would not always be captioned.  

The plaintiffs are represented by John Girardi at Girardi Keese, while the defense is being handled by Glenn Pomerantz and others at Munger, Tolles & Olson.

   

Toronto author Jewel Kats, inspiration for Archie Comics character, dies

From the CBC: 

Jewel Kats wrote frankly on her website of what she would like to see in her obituary: remember her work for people with disabilities.  

"During my lifetime, I've dedicated a lot of time towards disability awareness through the power of my pen. I hope to be acknowledged for my contribution in helping to create an inclusive society," she wrote. 

The Toronto children's author died on Jan. 7 with her family by her side, according to an obituary, which as she had hoped describes her as an advocate for people with disabilities. 

"I could just imagine her pulling up in all her sparkly pink princess diva fashion and some little child, little girl, who may have a disability, seeing her and thinking of all the possibilities that are out there," said Claudia Lenart, a Chicago-based fibre artist and illustrator who worked with Kats. 

"She really empowered people with disabilities, especially kids," she told CBC News. 

At the age of nine, Kats was involved in a car accident, leaving her with limited use of her legs. She would use a wheelchair with a hot pink hubcaps and a hot pink walker with a cheetah-print pouch — both complemented her colourful style.
Kats wrote 11 books and created Fairy Ability Tales, which reimagined fairy tales to star a protagonist with a disability or chronic illness. 

"Even reading the manuscripts could bring tears to my eyes — the sheer pluck of the hero/heroine and nobility of spirit, starting from a situation where most of us would just give up," said Victor Volkman, Kats's publisher. 

"One of Jewel's core beliefs is that all girls can be a princess. Why not?  It doesn't matter what shape you are, what you can or can't do, what color your skin is, how well you speak, every girl was a princess in her eyes," he said. 

She is also the inspiration for Harper Lodge, a recent addition to Archie Comics and the first character with a disability. 

Kats approached Archie Comics writer and artist Dan Parent at Fan Expo Canada. 

"I wheeled up to him, looked at him square in the eye and I said 'Why isn't there a character with a disability in Riverdale? How is that possible? He didn't have an answer right away. But he gave me his contact information," she told CBC News in 2014. 

Parent and Kats corresponded to develop Harper, who looks and acts much like Kats. 

"After talking to Jewel, I was like 'Gee, there's the character right there.' Jewel is a character," Parent told CBC News. 

"Like Jewel, the character of Harper, she doesn't let her disability get her down. It's part of her but she doesn't let it affect her." 

Parent said he was saddened to hear of Kats' death. 

"I just found her so inspiring. She's had so much hardship yet she's turned it into a positive." 

"We are saddened to hear of Jewel's passing," Archie Comics Publisher and CEO Jon Goldwater said in a statement to CBC News. "She was an energetic, smart and vocal supporter of Archie." 

"The character Harper Lodge, introduced in the pages of our flagship title, is a testament to the diversity of the Archie world. A world Jewel was a special part of. Our condolences go out to her friends, family and many fans." 

Lenart said Kats was very encouraging and supportive of her art work. 

"I don't know if I would have ever illustrated a book if Jewel hadn't found me. I'm eternally grateful to her for opening that door." 

Kats was a talented writer, who made children "feel included and special," she said. 

"I loved her writing. It made me cry. She has a way of really touching on your emotions." 

"I'm going to remember her, how beautiful she was both inside and out." 

She really had star quality. It was not just her beautiful appearance, it was her beautiful soul."

Duo become first reporters with Down syndrome at Denver news station

From The Mighty:

Two Special Olympics athletes are now the first reporters with Down syndrome to work at Denver7 News, an ABC affiliate. 

In a weekly series, Hanna Atkinson, 21, from Littleton, Colorado, and Connor Long, also 21, from Louisville, Colorado, conduct interviews and host segments on the athletes, coaches, volunteers and families of Special Olympics Colorado. They work in the studio with anchor Eric Kahnert and out in the field with a production team. 

The 2 to 5-minute segments run on Saturday mornings and re-air within newscasts during the week, according to a Denver7 press release. The initial series of features began on Dec. 19. 

Atkinson is an alpine skier, bicyclist and avid public speaker, and Long is a competitive swimmer, soccer player and basketball-lover. They both have experience reporting, as they’ve already been conducting interviews and doing studio tapings for Special Olympics. 

For Long, the job is a great combination of his love of athletics, advocacy and performing. 

“It’s perfect for me,” he told The Mighty in an email. “It’s a great honor to be part of this project.” 

“It sounded so cool and I knew I wanted to be part of this incredible show,” Atkinson added. 

Long and Atkinson might be the first ever on-air reporters with Down syndrome. 

“We are not aware of any other broadcast affiliates who have done something long-term like this — but we are pretty sure many will follow,” Long told The Mighty. “If we are the first, we are happy to be the first of many. If we are not the first, we are just as happy to be the latest team helping to change the face of reporting while telling great stories. 

Denver7 is approaching this as a year-round ongoing partnership with Special Olympics Colorado, meaning Long and Atkinson will be reporting indefinitely. 

For other aspiring reporters, Atkinson had this advice to offer: "Be on time Be prepared. Rehearse. Remember to look at who is talking and stay connected with the audience. Ask follow-up questions to keep the conversation going. Talk slowly and clearly. Pay attention because you never know when you are on camera. Have a positive attitude and show your personality in it. Always be yourself — your best self. Stay calm in tough situations and under pressure. Have a great time and don’t give up."

Washington Post covers Inspiration Porn Resolution, media pledge to avoid exploitative coverage of disability issues

From The Washington Post:

It was meant to be funny, the author said, a way to extract a shred of levity from a terrible moment. And the author “meant no harm,” said the editor in chief of the Mighty, the disability-focused online publication where the post appeared Dec. 20. 

The tipping point was a story by an autistic mother of an autistic child, a supposedly lighthearted take on the intense behavioral breakdowns so often associated with autism.  

“Introducing: Meltdown Bingo” featured a Bingo board with squares representing common consequences of an autism meltdown: a door slamming; a child punching a parent; someone starting to cry. Checked five boxes? Bingo! 

But plenty of outraged readers and members of the disabled community thought otherwise. The woman was mocking a devastating experience, they said, making the meltdown about her instead of the child in distress. It was nothing short of disability-shaming. And they weren’t about to let it slide. 

It wasn’t the first time the Mighty, launched in 2014, had clashed with the community it aims to serve. Disabled writers and activists had previously complained that the site gives too much space to the parents of children with disabilities, sometimes at the expense of a child’s privacy, and that it promotes “inspiration porn” — patronizing stories that celebrate people with disabilities for basic accomplishments or applaud able-bodied individuals just for being kind. 

But the backlash reached new heights after “Meltdown Bingo.” Writers and activists took to blogs and social media to pen scathing responses. AChange.org petition (titled “The Mighty: Apologize for the harm you do to the disability community!”) drew more than 280 signatures. A Twitter hashtag created by Disability Visibility Project founder Alice Wong fueled an impassioned discussion about the media’s portrayal of disability and inspired the Inspiration Porn Resolution — a media pledge to avoid exploitative coverage of disabled issues. 

The Mighty moved fast to stop the bleeding. It stripped the story from the website the day after it went up, and editor in chief Megan Griffo published acontrite editor’s note apologizing and explaining why the post had been taken down. 

“Basically, we messed up and hurt the exact community we aim to serve,” she said. “While there’s room to find humor when facing challenges, when the attempt at humor ends up not being funny, we cross into offensive territory.” 

The Mighty asked readers for guidance: What could it do better? Which websites and writers were covering disability issues the right way?To which some responded: That might have been a good question to ask before launching a disability-focused website. 

Wong’s reaction was to laugh. 

“I could list over 50 great websites and writers immediately,” she said. “Disabled people have always been a part of the media landscape — speaking out, creating, writing and protesting.” 

But if the Mighty wanted feedback, fine. Wong, an outspoken activist diagnosed with a form of muscular dystrophy when she was 2, created the hashtag #CrippingTheMighty to respond to the site’s questions while drawing a larger audience’s attention. 

“Who cares to listen to actual disabled people on their lived experience?” she said. “I’m still looking for an answer to that question.” 

Writers with disabilities — including some who had contributed to the Mighty — quickly piled on with critiques. 

In an open letter, blogger and occasional contributor Cara Liebowitz urged the publication to examine its habit of publishing stories that “objectify and even humiliate” disabled people. 

“I embrace humor to cope with my disabilities and I encourage others to do the same. But the difference between the self-deprecating humor that many disabled people utilize and the humor of ‘Meltdown Bingo’ is a question of perspective and nuance,” she said in the letter. “It is the difference between brushing myself off and making a crack about becoming floor pizza when I fall, and other people pointing and laughing at me on the floor." 

Many used Wong’s hashtag to make other suggestions: How about hiring more disabled people to write about disabled people? And — since the Mighty doesn’t compensate its contributors — how about paying those writers for their work? 

“Listen to those of us with lived experience as disabled people,” one Twitter user implored. “We’re the experts of our own lives.”  

It’s “important for parents of disabled people to have a voice,” another said, “but not louder than their sons and daughters speaking for themselves.”Griffo told The Washington Post in an email that the site is taking the feedback seriously. She pointed out that the Mighty has already moved to publish more stories about the damage caused by lauding disabled people as “inspiring” or “brave” just for living their lives.

“We’ve appreciated the constructive criticism,” she said, “but there’s also a lot of misinformation about us out there.” 

The two biggest inaccuracies “are that we are a site run by people without disabilities and that we make money through ads,” she said. “We have no ads, and there is no revenue.” 

She noted that the staff of 13 includes seven people with a disability or a disease, and that the remaining staffers all have family members “living with a condition.” 

She estimated that “somewhere between one-third and one-half” of the stories by outside contributors were written by people with disabilities. “But we’re doing far more outreach to get more of their voices,” she said. 

In a new post Monday, the Mighty founder Mike Porath said that a review of the site’s editorial standards is underway. 

“We’re discussing editorial guidelines not just internally, but with many others in the community,” he said. “We listen, we learn and we move forward.” 

Not all of the website’s critics are convinced. But even if the Mighty doesn’t change course, at least #CrippingTheMighty made people pay attention to the larger issues at stake, Wong said. 

The hashtag “amplified the voices of people with disabilities in their own words,” she said. “It shows the untapped talent and power of the disability community.” 

365 Days with Disability seeks to capture lives with disability on Instagram during 2016

From Two Thirds of the Planet:

365 Days with Disability365 Days with Disability is an exciting new Instagram-based project that seeks to capture lives with disability, one day and photo at a time, beginning January 1, 2016. 

The Way it Works: 

If you have a disability or are an ally of the disabled community and want to participate, simply upload a photo that you want to share of your life and hashtag it #365dayswithdisability on Instagram. 

All photos that have been hashtagged #365dayswithdisability will automatically be added to the project. 

In anticipation of some questions that might be asked: 

What’s the point of this?

• the point of this is to slices of our lives that are lived with a disability. The point is to cross-connect, to show each other and the world what living with a disability is really like. No more and no less amazing than lives without a disability and yet disability can often allow us to experience the world in a particular way.

• This project is spearheaded by Meriah Nichols of Two Thirds of the Planet (http://www.twothirdsoftheplanet.com) and Alice Wong of The Disability Visibility Project (http://www.disabilityvisibilityproject.com), both of whom are activists with disabilities.

It is about us and it is by us 

Do the photos have to be of something special or something in particular? 

Nope! It’s your call. Photos can be of your coffee, a selfie, your child, your view in the morning, your pet, your commute, the book you are reading – whatever you want. The point of this project is to show both how “NORMAL” our days are, and how “EXCEPTIONAL” they are as well. It’s to show the diversity of our lives. 

How about adding photo descriptions? 

Photo descriptions are descriptions of what the photo is about. This helps make photos more accessible for all. It’s not a rule of this project that photos be described (because there is no way to enforce it), but in the interest of including all (just as we all want to be included), PLEASE DESCRIBE YOUR PHOTO 

What happens when a photo is added to the project?

• it will be a part of the carousel and slideshow on Two Thirds of the Planet. Photos will be featured on both the website and the @365dayswithdisability Instagram account

Do I need to watermark my photos?

• you can add a watermark if you want. There are easy ways to add a watermark on your mobile device using watermark apps, and you can also watermark using picasa or picmonkey.

 I have more questions: who do I contact?Email us at twothirdsoftheplanet@gmail.com or visit facebook.com/twothirdsoftheplanet