Sunday, December 30, 2012

Russian adoption ban brings uncertainty, outrage and possible danger to orphans with disabilities there

From The NY Times. Pictured is Russian adoptee Alexander D'Jamoos, now a UT-Austin college student. He spoke to John Hockenberry at "The Takeaway" radio show about how devastating the Putin ban will be on other Russian orphans with disabilities.

MOSCOW — President Vladimir V. Putin on Friday signed into law a ban on adoptions of Russian children by American citizens, apparently blocking the departure from Russia of hundreds of orphans who had already been told that they would soon go home with new parents. 

Among the children whose lives were caught up in uncertainty by the ban was a 3-year-old girl with H.I.V. Her adoption by a couple from the Rocky Mountain West was approved by a judge on Thanksgiving Day but still required a 30-day waiting period, followed by numerous bureaucratic steps that cannot be completed before the ban will become effective on Tuesday. 

“I’m really, really stressed out,” said the adoptive mother, who asked not to be identified to protect the privacy of the girl she still expected to bring home. 

She said she was filled with second thoughts about whether they had done everything they could to assure the adoption. “Why weren’t we on a plane as soon as there was even a mention of the ban?” she said. 

The adoption ban, which was included in a broader law retaliating against the United States for an effort to punish Russian human rights violators, has opened a deep and emotional schism at the highest levels of the government and more broadly throughout Russian society. It has also dealt a severe blow to the country’s already strained diplomatic relationship with the United States. 

The Kremlin’s announcement that Mr. Putin had signed the law set off fierce reactions and some immediate second-guessing, even by some of the president’s political allies. 

Robert Schlegel, a lawmaker from the majority United Russia party, which championed the adoption ban in the lower house of Parliament, posted on Twitter that he had proposed an amendment that would create an exception to the ban for children with disabilities. Critics asked why he had not done so before the measure was approved. 

A number of commentators, including Vladimir Varfolomeyev, a well-known host on the radio station Ekho Moskvy, compared Mr. Putin to the biblical King Herod, noting that the adoption ban was signed on the same day that the Orthodox Church commemorates the Massacre of the Innocents, when Herod ordered the killing of infants in Bethlehem. 

There was also sharp reaction in Washington, where some officials seemed to have been holding back in the vain hope that Mr. Putin would veto the ban. 

In a statement, Senator John McCain, Republican of Arizona, called the ban “shameful and appalling.”
“The effects of this legislation are cruel and malicious,” Mr. McCain said, adding, “To punish innocent babies and children over a political disagreement between our governments is a new low, even for Putin’s Russia.” 

Mr. McCain was a leading supporter of the American law targeting human rights violators in Russia. That law is named for Sergei L. Magnitsky, a Russian lawyer who tried to expose government tax fraud but was arrested and died in prison in 2009 after purportedly being denied proper medical care. 

In a judicial corollary to the dispute over the Magnitsky bill, a Moscow judge on Friday acquitted the only official to be tried on charges related to Mr. Magnitsky’s death. 

The official, Dmitry Kratov, the former head of the medical service at Butyrka Prison, where Mr. Magnitsky had been held, had been charged with negligence for refusing repeated requests for treatment of a life-threatening illness. 

Charges against another doctor were dismissed this year, and in closing arguments on Monday, the prosecutor did an about-face and urged the acquittal of Dr. Kratov, saying there was no evidence that he was responsible for Mr. Magnitsky’s death. 

That reversal came four days after Mr. Putin, at his annual news conference, told journalists that Mr. Magnitsky had died of a heart attack, and waved off criticism by noting that prisoners die in jails all the time, including in the United States. 

Dr. Kratov was the only person on a list of 60 Russian officials implicated in the Magnitsky case by the U.S. Helsinki Commission to be brought to trial in Russia. 

Nikolai Gorokhov, a lawyer representing the Magnitsky family, said that Dr. Kratov had signed documents refusing Mr. Magnitsky’s request to be moved to an infirmary, and that he had been aware of a diagnosis of pancreatitis and gallstones five days before Mr. Magnitsky’s death. 

The Magnitsky law bars individuals like Dr. Kratov, who have been accused of human rights abuses, from traveling to the United States or from owning property or other assets here. 

Russian policy makers were vexed in trying to come up with a reciprocal response, in large part because Americans typically do not vacation, own homes or maintain assets in Russia. Wealthy Russians, on the other hand, have been involved in some of the biggest real estate deals in America in recent years, and often travel to the United States. 

The initial legislative response in Russia focused on sanctions similar to those in the Magnitsky law on American judges and others accused of violating the rights of adopted Russian children in the United States. The law was named for Dmitri Yakovlev, a toddler who died of heatstroke in Virginia in 2008 after his adoptive father left him in a parked car for nine hours. The father was acquitted of manslaughter by a judge who ruled the death an accident. 

Such cases have generated outrage here, which spilled over in 2010 when a Tennessee woman who was the adoptive mother of a 7-year-old boy sent him alone on a flight back to Russia with a note saying she could no longer handle him. 

Along with the Yakovlev law, Mr. Putin signed a presidential decree ordering that the government take steps to encourage additional adoptions by Russians, and to improve health care for orphans. 

Child welfare advocates, however, have mocked the decree as lip service in a country where more than 650,000 children live in foster care or orphanages, of whom about 120,000 are eligible for adoption. Many children in orphanages are sick or disabled, and most are unlikely to ever find permanent homes. 

Critics of the ban say there are not enough Russians willing to adopt healthy children, let alone those with special needs. 

Heather Whaley and her husband, Aaron, from Frederick, Md., were willing to do so and have been matched with a 4-year-old girl with several developmental delays who is in an orphanage in Vladivostok in the Russian Far East. They have gone through exhaustive screening, and have been scraping together money to visit the girl, who is named Regina. 

But now they say they do not know what to expect. 

Ms. Whaley, 31, a therapist for special-needs children, and her husband, 28, an engineer, said devout Christianity drove them to adopt, along with Ms. Whaley’s happy personal experience when her parents adopted two girls, giving her two new sisters. 

Regina, according to medical reports, is tiny for her age, and her speech is delayed. Russian families have not offered to take her. “With my training, I firmly believe that I can help her,” Ms. Whaley said. 

The mother from the American West said she had visited her daughter twice this year, in July and in November. The little girl has blond hair and big blue eyes and is so active that the orphanage director has said, “I think there’s a boy in that little girl.” 

But because she is H.I.V.-positive and already 3 years old, her chances of being adopted are slim. 

“I don’t think she is desirable to anybody in Russia at this stage of the game,” said the mother, who still plans to travel to Russia next month. “She would grow up in an orphanage for her entire life and be turned out when she comes of age.”

British Paralympian Dame Tanni Grey-Thompson believes 2012 was the year Paralympics 'came of age'

There were two deeply personal moments. The first came in the opening ceremony, when I was swept across to the middle of the stadium on a zip wire, confronting my fear of heights, only to be told by my daughter that the moment was “quite good”. Another family member told me the “girl in the tennis chair was better”. Thanks.
Still, it did mean that I could sit next to the track less than two metres from the British team when they proudly walked out for the athletes’ parade. The reaction they got from the crowd was everything I could ever have hoped for from 2012.
The second is David Weir’s gold medal in the marathon. I’m probably going to have to keep apologising to David for saying live on radio that he looked bored with one lap to go – relaxed would have been a better word. Either way I knew when he raised his arms to stretch and he took a deep breath that he looked so in control that he was biding his time before he attacked for home to win his fourth gold medal.
It is hard to pick just a few favourite moments. The atmosphere on Thriller Thursday when Jonnie Peacock silenced 82,000 people by merely holding his finger to his lips amazed even the most hard bitten supporters. One commentator said he had never heard that support for anyone, not even Usain Bolt. The 100m then turned into one of the best races of the Games, not just the most hyped.
Leaving the Olympic Park every night, so many people came up and wanted to share the joy they had experienced. There were the families who said they were worried about taking their children to goalball because they feared that they couldn’t keep quiet for that long, and they voiced their surprise when they did. And there were disabled children saying they now had a real choice of people they wanted to emulate.
The overriding feeling in and around the Games was that the Paralympic movement had developed – and is continuing to develop. Sometimes the signs were quite subtle: Seb Coe talking about the Paralympics, while the Olympics were still on, for example. Being able to say the Olympic and Paralympic Games instead of having to divide them by having two Games in the same sentence was another. And then, less subtle but genuinely groundbreaking, the sight of three Paralympians making the 12-strong shortlist for the BBC Sports Personality of the Year Award.

Most dramatic of all, though, were the recent UK Sport announcements of the specific funding packages. Paralympic sport came out of the deal generally quite well with only archery and powerlifting receiving less than before. The challenge is both one of motivating talent without a home Games, and finding a place for those who have been inspired by London. The harsh world of Lottery-funded sport is about the medals table and the potential to get on it.

As a result, men’s goalball is no longer going to be funded, only the women’s game. The argument of the men having to build up a national game is valid, but there are not thousands – even hundreds – of blind men knocking on the door to get into sport. Development is neither an art nor a science – there is a lot of luck, and you need numbers participating. I have never been a fan of targeting weak medals as opposed to development, as you have so much to lose if someone with a little more talent comes along.

There was a fear for a while that, post-2012, there could have been a funding cut, but many people have worked tirelessly behind the scenes to protect it. In hindsight, no Government based on the success of this year would probably have dared to cut the funding. Post-Rio is the challenge and nobody wants Great Britain to be where Australia were at these Olympics. The real challenge is not for Britain but rather for the International Paralympic Committee. They need to build on the success of this year, crack the media in the USA, and attract more sponsors.

Paralympic sport in the UK will never be the same again: we just need to keep spreading the enlightenment.

Wednesday, December 19, 2012

In Florida, Garrett Holeve, MMA fighter with Down syndrome, on his way to changing sport

Intro to a story in the Broward Palm Beach New Times in Florida:

"I'm dangerous," 23-year-old Garrett Holeve (pictured with his father) warns as he bounces around a bedroom in his parents' suburban, single-story house, throwing punches and kicks. A pungent combination of protein-powered farts, dirty laundry, and ball sweat permeates the air.

"I'll hurt a guy real bad," Garrett brags. "I'll be covered in too much blood, and I'll keep hurting him. Kick him in the mouth so hard the mouth guard flies out."

The words don't roll off his tongue. They bunch up in his throat and pour out in a slurred manner that's difficult to understand. This is just one of the ways Garrett's Down syndrome manifests itself.

"Oh, umm," he stammers frequently when looking for an answer. "Finding a fight takes time. My friend Chris is going to get me a fight."

He carries other telltale physical characteristics of the genetic condition: small ears that look like half-hearts, almond-shaped eyes, wide hands with short fingers, and a small, round mouth. Further affecting his health is rheumatoid arthritis that afflicts his right knee.

Garrett stands five feet tall and weighs 136 pounds. But he can drop to 125 pounds in a few days to make weight for his beloved sport, mixed martial arts. His black wifebeater reveals the tattoo of a black Punisher skull engulfed in black flames near his left shoulder. His neck and arms are solid muscle, large enough to make clear that his fists could permanently alter the alignment of an opponent's nose.

Here, in a modest home in one of Cooper City's gated communities, the floor is littered with kettlebells, a curl bar, a medicine ball, dumbbells, and two towel-covered milk crates that serve as makeshift pushup stands. Framed on the wall is the white tape in which MMA megastar Tito Ortiz wrapped his wrists for a recent Las Vegas fight. There's a poster of sharks, pictures of a half-dozen other professional fighters, and some torn-out pages of a Hooter's calendar featuring bikini-clad butts.

Playing on the flat-screen TV set is a DVD of Garrett's first exhibition bout earlier this year against a guy named Antonio Martin at Seminole Immokalee Casino. The crowd roars when Garrett throws a spinning backfist, but back in his room, the young man isn't paying attention. He's kneeing an imaginary opponent in the face before dropping to his knees to pound the thin, smelly air into submission. He then lifts his shirt and flexes his abs, a solid undefined wall of muscle padded by pasty white flesh. "This is the new me," he says enthusiastically.

For someone with Down syndrome, Garrett is extremely high functioning. Still, his cognitive ability is roughly equivalent to that of a 12-year-old's. His reading and math skills are at a third-grade level. He can't tell if a cash­ier gives him correct change after he buys a slice of pizza, his mom says, and it's unlikely he'll be able to understand this entire article.

But Garrett has found salvation in MMA, a combative sport that John McCain dubbed "human cockfighting." Though it was once banned in a dozen states for its gruesome brutality, nowadays jujitsu black belts of the umpteenth degree battle Olympics-grade wrestlers in refereed yet still-violent face-offs. This more polished competition has been masterminded by the Ultimate Fighting Championship, or UFC, the largest and most profitable promotion company in the world.

The sport has allowed Garrett to reinvent himself — mind and body. At the gym, he's not Garrett Holeve, the guy with Down syndrome. He's G-Money, an up-and-coming fighter with big ambitions.

"I will go for a contract for the UFC, get the contract, sign it, and be on UFC," Garrett declares.

But there's a problem. Even though he has spent countless hours training at American Top Team Weston, Garrett can't find a fair fight. People who run the Special Olympics have given little indication they will ever allow the sport, and it's unclear how many parents of special-needs' people would even allow their children to pursue MMA. And though he has fought two exhibitions against abled competitors, few fighters want to be the one who knocks out a guy with Down syndrome or, worse, gets knocked out by him.

Visualizing his first professional fight, Garrett snaps his foot into the air and says, "That's the kick I do," demonstrating an impressive combination of limberness, balance, and power. "Knockout."

Tuesday, December 18, 2012

Bones tell story of compassion, caregiving of disabled people in ancient times

From The NY Times:

While it is a painful truism that brutality and violence are at least as old as humanity, so, it seems, is caring for the sick and disabled. 

And some archaeologists are suggesting a closer, more systematic look at how prehistoric people — who may have left only their bones — treated illness, injury and incapacitation. Call it the archaeology of health care. 

The case that led Lorna Tilley and Marc Oxenham of Australian National University in Canberra to this idea is that of a profoundly ill young man who lived 4,000 years ago in what is now northern Vietnam and was buried, as were others in his culture, at a site known as Man Bac. 

Almost all the other skeletons at the site, south of Hanoi and about 15 miles from the coast, lie straight. Burial 9, as both the remains and the once living person are known, was laid to rest curled in the fetal position. 

When Ms. Tilley, a graduate student in archaeology, and Dr. Oxenham, a professor, excavated and examined the skeleton in 2007 it became clear why. His fused vertebrae, weak bones and other evidence suggested that he lies in death as he did in life, bent and crippled by disease. 

They gathered that he became paralyzed from the waist down before adolescence, the result of a congenital disease known as Klippel-Feil syndrome. He had little, if any, use of his arms and could not have fed himself or kept himself clean. But he lived another 10 years or so. 

They concluded that the people around him who had no metal and lived by fishing, hunting and raising barely domesticated pigs, took the time and care to tend to his every need. 

“There’s an emotional experience in excavating any human being, a feeling of awe,” Ms. Tilley said, and a responsibility “to tell the story with as much accuracy and humanity as we can.” 

This case, and other similar, if less extreme examples of illness and disability, have prompted Ms. Tilley and Dr. Oxenham to ask what the dimensions of such a story are, what care for the sick and injured says about the culture that provided it. 

The archaeologists described the extent of Burial 9’s disability in a paper in Anthropological Science in 2009. Two years later, they returned to the case to address the issue of health care head on. “The provision and receipt of health care may therefore reflect some of the most fundamental aspects of a culture,” the two archaeologists wrote in The International Journal of Paleopathology

And earlier this year, in proposing what she calls a “bioarchaeology of care,” Ms. Tilley wrote that this field of study “has the potential to provide important — and possibly unique — insights into the lives of those under study.” In the case of Burial 9, she says, not only does his care indicate tolerance and cooperation in his culture, but suggests that he himself had a sense of his own worth and a strong will to live. Without that, she says, he could not have stayed alive. 

“I’m obviously not the first archaeologist” to notice evidence of people who needed help to survive in stone age or other early cultures, she said. Nor does her method “come out of the blue.” It is based on and extends previous work. 

Among archaeological finds, she said, she knows “about 30 cases in which the disease or pathology was so severe, they must have had care in order to survive.” And she said there are certainly more such cases to be described. “I am totally confident that there are almost any number of case studies where direct support or accommodation was necessary.” 

Such cases include at least one Neanderthal, Shanidar 1, from a site in Iraq, dating to 45,000 years ago, who died around age 50 with one arm amputated, loss of vision in one eye and other injuries. Another is Windover boy from about 7,500 years ago, found in Florida, who had a severe congenital spinal malformation known as spina bifida, and lived to around age 15. D. N. Dickel and G. H. Doran, from Florida State University wrote the original paper on the case in 1989, and they concluded that contrary to popular stereotypes of prehistoric people, “under some conditions life 7,500 years ago included an ability and willingness to help and sustain the chronically ill and handicapped.” 

In another well-known case, the skeleton of a teenage boy, Romito 2, found at a site in Italy in the 1980s, and dating to 10,000 years ago, showed a form of severe dwarfism that left the boy with very short arms. His people were nomadic and they lived by hunting and gathering. He didn’t need nursing care, but the group would have had to accept that he couldn’t run at the same pace or participate in hunting in the same way others did. 

Ms. Tilley gained her undergraduate degree in psychology in 1982 and worked in the health care industry studying treatment outcomes before coming to the study of archaeology. She said her experience influenced her interest in ancient health care. 

What she proposes, in papers with Dr. Oxenham and in a dissertation in progress, is a standard four-stage method for studying ancient remains of disabled or ill individuals with an eye to understanding their societies. She sets up several stages of investigation: first, establishing what was wrong with a person; second, describing the impact of the illness or disability given the way of life followed in that culture; and third, concluding what level of care would have needed. 

A paralyzed person, for example, would need “direct support” similar to nursing care while someone like Romito 2 would need “accommodation,” that is to say tolerance of his limitations and some assistance.
Debra L. Martin, associate professor of biological anthropology at the University of Nevada, Las Vegas, invited Ms. Tilley to write “The Bioarchaeology of Care” for a special report on new directions in bioarchaeology published this year in the Archaeological Record, the magazine of the Society for American Archaeology

She said in an e-mail that what Ms. Tilley proposes “is a very nicely integrated approach” to using all the available evidence. “Lorna’s innovative approach,” she said, “has provided a way to move from the bones of individuals to thinking about the community as a whole.” 

The fourth stage in the proposed method is where the gathered facts form the basis for interpretation. Extrapolating from hard evidence drawn from human remains to conclusions about how people lived is at the heart of bioarchaeology, a word coined in the 1970s by Jane E. Buikstra at Arizona State University to describe using the methods of physical anthropology, which concentrates on the bones, and those of archaeology, which concentrates on the culture and its artifacts, to try to “people the past,” as she phrases it, to put ancient people into a cultural context. 

Dr. Buikstra, director of the Center for Bioarchaeological Research, who currently concentrates on the co-evolution of humans and their diseases, said that “People have from time to time across the years tried to attribute caring and caring for” to ancient humans. But, she said, “getting into the minds of ancient people” is always difficult. Ms. Tilley’s methods for how and when to make that kind of leap would base such attempts on standards used today for evaluating health care needs for severely disabled people. 

Dr. Martin, who studies violence and illness as well, gave an example from her own work of the sort of case that can benefit from Ms. Tilley’s approach. The case is described in a coming book, “The Bioarchaeology of Individuals.” A skeleton of a young woman about 18 years old from a site on the Arabian Peninsula more than 4,000 years old indicated that the woman had a neuromuscular disease, perhaps polio. 

“Her condition likely made it difficult for her to walk,” Dr. Martin wrote in an e-mail. “She had exceedingly thin arm and leg bones with very little buildup of normal muscle attachments.” She probably received round-the-clock care, Dr. Martin concluded. 

But one problem that she had was apparently not a result of the disease. The teeth that she had were full of cavities, and she was “missing teeth from abscesses and periodontal disease.” 

Those who cared for the young woman may have been too kind, Dr. Martin said. Her people grew dates, and, “Perhaps to make her happy, they fed her a lot of sticky, gummy dates, which eventually just rotted her teeth out, unusual for someone so young.”

iPads, Bob Marley's 'One Love' help autistic high schoolers in NY make sweet music

From Fast Company:

On one recent day at PS 177 in Queens, NY, a scene that’s typical this time of year unfolds: the school band plays some holiday tunes in the hallway. But there’s something different about this band: all six students have severe learning disabilities--most are autistic to some degree--and their instrument of choice isn’t a horn or woodwind, but a tablet computer.

Their teacher, Adam Goldberg, has mounted eight iPads on stands and arranged them in a horseshoe pattern. Members of the PS 177 Technology Band, as they’ve dubbed themselves, assume their places and play an elegant, faithful rendering of “Dance of the Sugar Plum Fairy,” from “The Nutcracker.” “Carol of the Bells” and an original tune, “4-2-4 Jam,” soon follow. Festively garbed teachers and students pass and applaud between numbers.

In some cases these are kids that were nonverbal. They really adapted and changed tremendously.”

“We perform, they love it, they clap. It’s my favorite thing to do,” one of the band members, Jaquan Bostick, 16, tells me later.

To hear Goldberg and the New York Department of Education’s Leslie Schecht tell it, the iPad orchestra before me is a symbol of the transformative power of Apple devices in special education. “In some cases, these are kids that were nonverbal,” says Schecht. “They really adapted and changed tremendously.”

Neither Schecht nor Goldberg have any financial relationship with Apple (“I wish,” says Schecht, when I ask if the DOE gets any iPad handouts), but they’ve invited me to PS 177 solely to spread the gospel about what they think could be a transformative technology for students with autism or other learning disabilities.

Goldberg tells the story of one student, James, who would only repeat the word “batwooie”--bathroom--on loop, largely to escape social situations. Over time, Goldberg got James to try music applications on the iPad. One day in class, Goldberg saw that James appeared in a more outgoing mood. Goldberg invited James to the front of the class to sing Bob Marley’s “One Love,” which the other students had been singing--and he “sang every word,” recalls Goldberg. Then James turned to his teacher and said, “iPad please.”

Another student, Omari, had behavioral problems that sometimes compelled teachers to physically remove him from the room. One day, when Omari seemed to be nearing a tantrum, Goldberg managed to calm the student with the mellowing Brian Eno-made music app, Bloom.

“When I saw the effect these had on the kids,” says Kathy Posa, the school’s principal, “I pulled together as much budget as I could and ordered 90.” Schecht estimates that about 5,000 iPads are currently in use throughout the 56 schools in District 75, New York’s citywide special education district. They’re not sure just what it is about iPads that special ed students, and particularly autistic students, respond to--some combination of the visual and tactile, and the way the device instantly reacts to inputs.
It was like getting his ear to conduct his hand, out of that tactile sensitivity. Because he does have a fantastic ear.”

No one is probably more delighted to discover the iPad’s usefulness to special needs students than Apple itself, suggests Schecht. Apple set out, after all, simply to make a device to capture a broad consumer computing market. “I don’t think Apple had any idea they would have an impact on education” with the iPad, says Schecht, “and special education is just the gravy. They had no idea it was going to work so well with students with special needs.”

It's something Apple is playing close attention to now, though. "We're seeing uses out there that are just heartwarming," Phil Schiller, SVP of worldwide marketing, says a little before the 13:00 mark of this Apple-produced video, which shows various cases of autistic youth engaging with the iPad.
“It’s not a magic bullet,” concedes Schecht. “But in some cases, it really is.”

Sunday, December 16, 2012

Associated Press: No link between Asperger's, violence, experts report

From The AP:

A law enforcement official, speaking on condition of anonymity because the person was not authorized to discuss the unfolding investigation, said Lanza had been diagnosed with Asperger's.

High school classmates and others have described him as bright but painfully shy, anxious and a loner. Those kinds of symptoms are consistent with Asperger's, said psychologist Eric Butter of Nationwide Children's Hospital in Columbus, Ohio, who treats autism, including Asperger's, but has no knowledge of Lanza's case.

Research suggests people with autism do have a higher rate of aggressive behavior — outbursts, shoving or pushing or angry shouting — than the general population, he said.

"But we are not talking about the kind of planned and intentional type of violence we have seen at Newtown," he said in an email.

"These types of tragedies have occurred at the hands of individuals with many different types of personalities and psychological profiles," he added.

Autism is a developmental disorder that can range from mild to severe. Asperger's generally is thought of as a mild form. Both autism and Asperger's can be characterized by poor social skills, repetitive behavior or interests and problems communicating. Unlike classic autism, Asperger's does not typically involve delays in mental development or speech.

Experts say those with autism and related disorders are sometimes diagnosed with other mental health problems, such as depression, anxiety, bipolar disorder or obsessive-compulsive disorder.

"I think it's far more likely that what happened may have more to do with some other kind of mental health condition like depression or anxiety rather than Asperger's," Laugeson said.

She said those with Asperger's tend to focus on rules and be very law-abiding.

"There's something more to this," she said. "We just don't know what that is yet."

After much debate, the term Asperger's is being dropped from the diagnostic manual used by the nation's psychiatrists. In changes approved earlier this month, Asperger's will be incorporated under the umbrella term "autism spectrum disorder" for all the ranges of autism.

Croatia lifts voting prohibition for people with disabilities

From Mental Disability Advocacy Center:

Dec. 14 the Croatian parliament added 16,355 adults to the electoral register. These people are all under guardianship, a legal regime which, until today, had excluded them from their right to political participation. MDAC and the Croatian NGO Shine had highlighted this anomaly in their 2011 report, “Out of Sight: Human Rights in Psychiatric Hospitals and Social Care Institutions in Croatia”.

“MDAC congratulates Croatia for being the first European country to amend its election law in recent times to allow people with disabilities to vote,” said Oliver Lewis, MDAC Executive Director. “We call upon the government to continue this good work by ensuring that these new voters are enabled to exercise their autonomy in all areas of their life, not just in the ballot box.”

The Croatian government had previously recommended that judges in individual hearings be given the authority to remove someone’s right to vote on the basis of their disability. This proposal flagrantly breaches the UN Convention on the Rights of Persons with Disabilities, a fact which was pointed out very firmly by civil society organisations including the Association for Social Affirmation of People with Mental Disabilities (SHINE), GONG and the Association for Self-Advocacy. The office of the Disability Ombudsperson also voiced its displeasure with the original proposals, relying on recommendations by the UN Committee on the Rights of Persons with Disabilities which insists on disability being no barrier to full and equal political participation.

The new legal provisions are contained in the Register of Voters Act, which enters into force eight days after being published in the Official Gazette, i.e. in approximately two weeks’ time.

Saturday, December 15, 2012

Access4Kids device brings tablets in reach of disabled kids with fine motor impairments

From Georgia Tech. Ayanna Howard (right) and Hae Won Park (left) model the Access4Kids device that allows kids with fine motor impairments to control a tablet.

Even those who consider themselves particularly coordinated will no doubt have been guilty of a misplaced tap here or a badly timed swipe there when using touchscreen devices. But spare a thought for children with fine motor impairments who are essentially excluded from the touchscreen device world and all its educational, entertainment and social benefits. A new device called Access4Kids aims to bring this world within reach of such users.

While there are various technologies available that bring control of traditional computer platforms to those with motor impairments, the explosion in the use of touchscreen devices has caught many by surprise and left children with fine motor impairments on the sidelines.

Developed by Ayanna Howard, professor of electrical and computer engineering, and graduate student Hae Won Park at Georgia Tech, Access4Kids is a wireless input device that uses force-sensitive resistors to measure pressure from physical movements and converts them into fine-motor gestures to control a tablet.

Aimed at children lacking the ability to touch a specific small region of a touchscreen with the appropriate amount of force and timing required for press and swipe gestures, the current prototype device includes three force-sensitive resistors, which the child hits or swipes with their fist. Various combinations of hits or swipes are translated into different “touch-based” commands that are relayed to the tablet.

Supporting open-source apps and software also developed at Georgia Tech gives users access to off-the-shelf apps, such as Facebook and YouTube, as well as custom-made therapy and education apps.
In its current form, the device can be worn around the forearm or placed on the arm of a wheelchair, but Howard is working on a second prototype that includes wireless sensors that can be placed anywhere a child is able to hit them, such as with a foot or the side of the head.

The first prototype has already received positive feedback from typically developing children and children with disabilities alike, as well as caregivers. User trials for the second prototype are set to begin soon with Howard hoping to start clinical trials early in 2013.

“We can’t keep it in the lab,” Howard said. “It doesn’t make sense for me to have one child, one at a time look at it and say ‘Hey that’s really cool’ and not have it out there in the world. The real goal is to make it safe and efficient so someone can make it into a commercial product.”

UK 'more positive about disability' following Paralympics

From BBC News:

Three-quarters of Britons feel more positive about the role of people with disabilities in the UK following the Paralympics, a BBC survey three months on from the Games suggests.

Some 79% of 2,400 non-disabled people questioned by ComRes for the BBC also said they thought wider perceptions of disability had improved.

But the figure fell to 65% among the 600 people with disabilities surveyed.

A leading charity has welcomed the news but says there is "some way to go".

ComRes polled more than 3,013 UK adults over three weekends in late November and December, including 600 people with a "long-standing mental or physical disability or condition".

According to the research, 75% said they felt more positive about the role of people with disabilities.
Among women, 78% said they felt more positive now compared to 72% of men.

In a poll for the Charities Aid Foundation in September 2012 - during the Paralympics - ComRes found 76% of all respondents felt the games had made them feel more positive about the role of people with disabilities in the UK.

Meanwhile, more than three-quarters (76%) of all respondents - including those with a disability - say they think people's attitudes towards those with disabilities have improved since the games, while just 1% believe perceptions have worsened and 17% feel there has been no change.

However, the research suggests a divergence of views between those with a disability and those without one.
Respondents who have a longstanding mental or physical disability or condition are less likely than those who have not to say people's perceptions have improved - 65% compared to 79% of those without a disability.

Those with a disability are also "more likely to say they think there has been no change in perceptions, or to say they think people's perceptions continue to be negative," the survey reports.

Richard Hawkes, chief executive of the disability charity Scope, told the BBC: "It's a tough time to be disabled. It's a battle to get the right support. You're more likely to be out of work. It can be a struggle to get out and about in the community.

"Attitudes underpin everything. Access, for instance, is as much about thinking differently as it is spending money."

Mr Hawkes added: "We clearly still have some way to go, but we shouldn't write off the Paralympics effect.

"We need to build on the momentum. It's about visibility and greater discussion. Let's ask what else we can do to increase disabled people's visibility in the media, in politics, in the arts and above all in everyday life?"

Tuesday, December 11, 2012

In planned film, "Love Land," young woman with intellectual disability fights the label that keeps her from her community

From the "Love Land" production team. You can find the film on Facebook here.

Love Land is a narrative dramatic feature film that follows Ivy, a young woman with a severe traumatic brain injury that affects her motor and cognitive skills, as she faces her refusal to be identified as a person with an intellectual disability. When she is placed in an institution for being a danger to herself and others, Ivy will stop at nothing to prove to the world, and to herself, that she... is “normal” enough to transcend the label of “Special.”

The film is a tragedy, documenting one community’s failure to transcend an age-old system of “segregating the Special.” Despite its ambivalent outcome, the tragedy of Love Land is offset by the hope of a better future marked by interdependence and self-determination for all.

Love Land is about the importance of diverse (and often risky) experiences to the fulfillment of the human condition. It's about refusing to accept the segregation of the world's largest minority, and about jump-starting a cultural discourse in America to help change perceptions of “pity and fear” to those of “equal citizenship” .

Love Land is a movie with nuanced, layered characters that reach beyond stereotypes, presenting characters with intellectual disabilities as complete and conflicted human beings—capable of good, evil, and grey—with far-reaching desires and vibrant, profound sexual identities; it is a movie that dares to say that social views – not individual bodies – are the real barriers for people with disabilities ; it says that “charitable interaction” is unacceptable, proclaiming full community inclusion as a civil right; and it puts its money where its mouth is by only casting professional actors with the actual disability labels portrayed by the characters in the film. Love Land further gains a great deal of creative integrity from its ties with the constituents of activist organizations and disability scholarship programs.

Hashtag #Paralympics most trending UK sports event of 2012, Twitter reports

From Orange News in the UK:

The hashtag #Paralympics has topped the table for the most trending UK sport event of 2012, beating off stiff competition from the Olympics and many leading football clubs, according to Twitter.

In a football-dominated top 10 list, the Olympics came in at number four, according to the 2012 trends study by the social media network.

The International Paralympic Committee (IPC), which was in charge of the Games, is particularly pleased at topping the trending list which shows spikes in Twitter conversations. The 2012 trends reveal what captured the public's attention, rather than what terms were consistently popular.

Craig Spence, the IPC's communications director, said: "Our aim was to make the London 2012 Paralympics a truly digital Games and I think this is reflected with #Paralympics topping the most trending UK sport event table.

"From the word go our athletes were encouraged to embrace social media throughout the Games, tweeting and Samsung video blogging from behind the scenes. We provided more behind-the-scenes access during London 2012 than any other global sporting event previously.

"This success is a real team effort with the IPC, Locog (the London 2012 organisers), BPA (British Paralympic Association), Channel 4, BBC Radio 5 Live, media, athletes and most importantly British tweeters all playing a significant part."

Monday, December 10, 2012

Glenn Close accepts nonacting award: American Giving Award for her mental-illness activism

LOS ANGELES — Glenn Close has a Tony Award, Emmy Award, Golden Globe and six Oscar nominations, but her latest honor is among the most meaningful.

The 65-year-old actress will accept a special recognition at the second annual American Giving Awards, to air Saturday (8 p.m. EST) on NBC, for her work with Bring Change 2 Mind, a nonprofit organization that aims to end the stigma of mental illness.
Close was inspired to help launch the group in 2009 after experiencing the challenges presented by mental illness in her family.

She talked with The Associated Press about what’s next for the charity — and for her.

AP: What led you to establish Bring Change 2 Mind?

Close: Realizing that what I should have been giving all my nonprofit time to was right under my nose in my own family. My sister is bipolar and my nephew is schizoaffective. And because our family had really no knowledge of or vocabulary for mental illness. (My sister) Jessie was actually diagnosed after her son. I think if we had been more knowing as a family, a lot of real suffering could have been avoided. ... And I’ve always been as an actress very, very cognizant of the power of words and how frightening some words can be and how they lose their power if you just keep repeating them, and fling them out into the open. So that’s basically what we decided to do.

AP: What progress has been made since 2009?

Close: We’ve made great progress with our Facebook website community. I think we’re being more and more known for a place where you can go to find people who are dealing with the same thing you’re dealing with, where you can tell your story, where you can have communication, the potential of a fantastic community that can grow up around this. The Web is perfect for this kind of thing because the person’s first step might be to acknowledge, to take our pledge on Bring Change 2 Mind, to acknowledge that they need help and to be able to articulate that on a website rather than in person with anyone ... I think what we can do is get the message out.

AP: How are attitudes toward mental illness changing?

Close: That’s tricky because one really fascinating fact and the reason I stay really committed to this is stigma is still pretty entrenched. ... The most effective ways to change somebody’s prejudice and attitudes around mental illness is to meet someone who actually has it and to realize that they’re OK.

AP: How do cinematic depictions of mental illness affect perceptions?

Close: If they’re positive like ‘Silver Linings Playbook’ — which I thought was a wonderful movie — I think it’s very positive. It opens up the dialogue. It’s all good, as far as I’m concerned. The tradition has been to use mental illness as a plot device for violence, for just plain old craziness, because that’s very easy. I mean, I was Alex Forrest in ‘Fatal Attraction.’ ... The amazing thing was when I was researching that character, even the psychiatrists that I talked to never mentioned the possibility of a mental disorder. And that was also before my sister was diagnosed, so it wasn’t even in my radar screen. But now I think we are getting more medically literate about all that, and I think it’s fantastic that really good movies showing interesting people who are coping with life and happen to have a mental disorder is great because there’s one in four. It’s an astounding statistic. One in four people across this globe are affected in some way by mental illness.

AP: How does this award help the cause?

Close: It’s huge. You don’t see that many things about mental illness. ... That shows that mental illness is not a comfortable thing for people to talk about, and the fact that they are giving me this award and my family — my sister, two of her children and my daughter are going to come up with me — because I think the image of a family together surrounding and supporting their members who have mental illness, there’s no words for it. That’s where I’m so moved and honored by this recognition and excited, actually, that we can put that image on television.

AP: What’s next for you?

Close: I’m very excited. I’m going to be doing, starting in February, a movie with Nick Nolte. We play kind of a rock ‘n’ roll couple. He’s an iconic rock ‘n’ roll guy, singer-songwriter out of the Troubadour/Laurel Canyon tradition ... that whole incredible generation of singer-songwriters, and he’s of that ilk, and I’ve stuck with him through thick and thin, and I won’t tell you the plotline, but I was very, very moved by the story. I think it’s timely and really well written. I think it’s going to be a lot of fun and it will have great music in it.

AP: What’s it called?

Close: ‘Always on My Mind.’

Thursday, December 6, 2012

"Don't Call Me Inspirational," new book from feminist, writer, and disability activist Harilyn Rousso comes out in January 2013

From the Temple University Press:

New book by psychotherapist, painter, feminist, filmmaker, writer, and disability activist Harilyn Rousso, Don't Call Me Inspirational, A Disabled Feminist Talks Back, will be released in January 2013.
For Rousso, hearing well-intentioned people tell her, "You're so inspirational!" is patronizing, not complimentary.

In her empowering and at times confrontational memoir, Don't Call Me Inspirational, Rousso who has cerebral palsy, describes overcoming the prejudice against disability—not overcoming disability. She addresses the often absurd and ignorant attitudes of strangers, friends, and family.

Rousso also examines her own prejudice toward her disabled body, and portrays the healing effects of intimacy and creativity, as well as her involvement with the disability rights community. She intimately reveals herself with honesty and humor and measures her personal growth as she goes from "passing" to embracing and claiming her disability as a source of pride, positive identity, and rebellion.

A collage of images about her life, rather than a formal portrait, Don't Call Me Inspirational celebrates Rousso's wise, witty, productive, outrageous life, disability and all.


"I've known Harilyn Rousso as a powerful activist and gifted artist, but with this revelatory book, she becomes something even rarer: a storyteller who conveys her uniqueness and so helps us to discover our own. Don't Call Me Inspirational is irresistible to read, honest, insightful, and universal."Gloria Steinem

"Don't Call Me Inspirational reads like a collection of eloquent, timeless letters to the world. Rousso writes to her readers as if she knows each and every one of us and wants to strengthen the bond we share. A disabled woman's life has never been so thoughtfully and beautifully rendered—in fresh, vital prose with candid humor and a vivid imagination."
Simi Linton, author of My Body Politic and Co-director of the film Invitation to Dance
"Don’t Call Me Inspirational is stunning, a pleasure to read. Rousso’s outstanding book is both a beautifully written memoir about growing up in the 1950s and a critical historical analysis of disability politics. The author moves through her life, diving into gender/sexuality/embodiment/disability politics with grace and honesty. Nothing is simply resolved; rather, it is lived, moved through, engaged, struggled over, and then revisited."
Michelle Fine, Distinguished Professor of Psychology at the Graduate Center, City University of New York


I: Close Encounters with the Clueless
1. Who’s Harilyn?
2. Birth, Mine
3. Close Encounters with the Clueless
4. The Beggar and the Cripple
5. The Stare
6. Always the Other
7. Why I am Not Inspirational
8. Home
II: On Leaving Home
9. Wedding Day, 1933
10. Dancing
11. Exploding Beans
12.My Sister
13. Adolescent Conversation
14. On Leaving Home
15. Hideous Shoes
16. Driving High
17. Eli
18. My Father, Myself
19. Driving away from Home
III: On Not Looking in the Mirror
20. Walk Straight!
21. On Not Looking in the Mirror
22. Facing My Face
23. Meditations on Speech and Silence
24. Daring Digits
25. Right-Hand Painting
26. Being Only One: Some Meditations on Solitude
IV: What's a Woman?
27. What’s a Woman?
28. He Was the One
29. Blank Page
30. Buying the Wedding Dress
31. First Date
32. First Night
33. Mixed Couple
34. Sylvester
35. Faces of Eve
36. Tough Bird
37. Hand in Hand
V: Why Claim Disability?
38. Finding My Way
39. Keeping the Distance
40. That “Inspirational” Label
41. Token of Approval
42. Disabled Women’s Community
43. The Story of Betty, Revisited
44. Listening to Myself
45. Activist Sisters
46. Toilet Troubles
47. My Mentoring Project
48. Why Claim Disability?
49. Broken Silences
50. Eulogy for My Nondisabled Self
51. Eulogy for My Freakish Self
52. Ode to My Disabled Self

About the Author:

Harilyn Rousso is a disability activist, feminist, psychotherapist, writer, and painter. She is the Executive Director of Disabilities Unlimited Consulting Services, founder of the Networking Project for Disabled Women and Girls, co-editor of Double Jeopardy: Addressing Gender Equity in Special Education and author of Disabled, Female, and Proud!

Wednesday, December 5, 2012

In Britain, "Meet the Superhumans," Channel 4 ad for London 2012 Paralympics, emerges as most successful marketing campaign of year

From Inside the Games:

Meet the Superhumans, the Channel 4 advert for its coverage of the London 2012 Paralympics, is emerging as the most successful marketing campaign of the year by winning a series of awards.

The 90 second advert, which was made by its in-house marketing team, 4Creative, dominated the prestigious PromaxUK awards, which recognise the work of the marketing and creative professionals who promote television channels and programmes.

They took gold for Best Direction as well as for Best Sports Promo, Best Editing, Best Launch and Best Long Form.

The ad also did well at the British Arrow Craft Awards, which recognise the best British moving-image adverts.
There it won a gold award for direction by Tom Tagholm.
It also scooped the gold award for recorded music, awarded to Tagholm and Tim Hardy.

"Harder Than You Think", by hip hop legends Public Enemy, provided the soundtrack to the advert which stars Ellie Simmonds, Jody Cundy, Jonnie Peacock and Oscar Pistorius.

It took 15 days to film and features a bomb blast leaving a British soldier disabled, a car crash and a pregnant mother being told that her baby will be born with a disability.