The City University of New York (CUNY) has launched its new online bachelor's degree in Disability Studies. The program is the first of its kind in the country geared to the educational needs of front-line direct support professionals, para-professionals, service coordinators, advocates, and parents. The program offers a fully-accredited degree at a reasonable cost from one of the nations most recognized universities.
Students in the Disability Studies program can choose one of four concentrations:
• Intellectual/Developmental Disabilities
• Autism Spectrum Disorder
• Mental/Behavioral Health
• Interdisciplinary Disability Studies
Graduates from the B.A. in Disability Studies are equipped with the knowledge, values, and skills sought by agencies providing services to individuals in community programs. The students will be prepared for advanced study in disability studies, social work, rehabilitation counseling, physical and occupational therapy, education, sociology, psychology, anthropology, and liberal studies.
Mariette Bates, Ph.D., Distinguished Lecturer, is the Academic Director for the B.A. in Disability Studies. Dr. Bates was formerly director of One to One, the foundation created by Geraldo Rivera after his exposé of Willowbrook State School. From 1983 to 2008 she was vice president of the Maidstone Foundation, where she worked with over 600 parents’ groups and emerging community organizations, specializing in systems change advocacy for underserved populations and strategic planning, board development and fundraising. Mariette is a graduate of Empire State College, the Columbia University Institute for Not-for-Profit Management, and the Union Institute, where she was awarded her doctorate in philanthropy and developmental disabilities. She has received the Sussman Dissertation Prize, Outstanding Alumna awards from Empire State College and the Union Institute, several leadership awards from parents’ groups and the Self-Advocacy Association of New York State.
Thursday, November 29, 2012
From CUNY. You can attend a webinar about the degree on Tuesday Dec. 4, 12:30-1:30 p.m. EST.
Posted by BA Haller at 3:06 PM
Monday, November 26, 2012
Los Angeles Times:
While making the 1997 movie "Los Locos," Jean-Marc Vallée was befriended by a Down syndrome actor who was an extra in the production.
"I had a special relationship with him," the French-Canadian director ("The Young Victoria") recalled. "Every time on the set he was coming to me. I was like his hero. He was very welcoming every day. I had a very nice connection."
Actor-turned-filmmaker Travis Fine was a regular on the ABC 1989-92 western series "The Young Riders," when he met Chris Burke, the Down syndrome star of the acclaimed drama "Life Goes On," which was also on the network at the time.
"We met at an ABC party," Fine said. "He liked my character on 'Young Riders.' He was a hell of a nice guy."
And a few years later, Fine had a great experience working on the USA movie "My Antonia," which featured Down syndrome actor Blair Williamson.
Both these filmmakers' memorable encounters were the inspiration for crucial Down syndrome story lines in their new films. (Down syndrome is a physical and mental disorder caused by having 47 instead of the usual 46 chromosomes.)
Vallée's French-Canadian drama "Cafe de Flore," which opened Nov. 16, stars Vanessa Paradis as Jacqueline, a single mom working in a beauty salon in Paris in 1969, raising her young Down syndrome son, Laurent (Marin Gerrier), and striving to give him a "normal" life, including education at a private school.
But their relationship changes when a young girl with Down syndrome, Veronique (Alice Dubois), arrives at the school. Laurent and Veronique quickly develop such a tight bond that Jacqueline becomes jealous.
In Fine's "Any Day Now," which opens Dec. 14 after winning several awards on the festival circuit, Alan Cumming and Garret Dillahunt play a gay couple in Los Angeles in the late 1970s who take in Marco (Isaac Leyva), a teenager with Down syndrome, after he is abandoned by his drug-addled prostitute mother. But social conventions won't allow the couple to adopt Marco.
"I wanted to create a love story and talk about soul mates and pure love," Vallée said of "Cafe de Flore." "I thought of Down syndrome children because to me they represent pure love."
He began the casting process in Montreal, France and Belgium to find youngsters with Down syndrome who could act.
While in Paris, they met Dubois, who was 10 at the time. "She told us about her boyfriend at school," Vallée said. "They wanted to get married. They hugged. They kissed."
Her boyfriend just happened to be Gerrier, who is now 12. Because they were so attached in real life, Vallée said he "got some magical moments in their performances."
For Gerrier's scenes that didn't involve Dubois, Vallée made acting a game "with some rewards," he said. "For instance, I hired this kid close to his age that looked like Marin because I wasn't sure I was going to be able to do everything with him. I was going to use the kid as a double."
But Vallée realized that Gerrier could easily repeat every action Vallée showed him. So the young actor became part of the game playing, especially in a scene in which the boy is tied up to the bed and screaming for his mother.
"I did the scene first and then the other kid did it," said Vallée. Because Gerrier was extremely competitive, he stayed in bed the longest and earned a ride on a merry-go-round that night.
"Any Day Now" was inspired by a true story about the relationship between an eccentric named Rudy, who lived in Brooklyn in the 1970s, and his relationship with a young disabled boy.
George Arthur Bloom wrote the script some 20 years ago; Fine was introduced to it by Bloom's son. With Bloom's permission, Fine began reworking the script. He moved the action to Los Angeles in the 1970s; Rudy was turned into a gay singer working in a drag club who falls in love with an attorney, Paul, who has just come out of the closet.
"The original kid never spoke," Fine said. "He just kind of mumbled and muttered. I wanted to understand why Rudy fell in love with this kid so quickly. I know Down syndrome kids are often referred to as love children because they have a sweet, gentle nature to them."
Casting directors sent out calls to schools and Down syndrome organizations looking for boys with Down syndrome who could act.
"I saw Isaac's taped audition on my computer and instantly saw his ability to do what I think is the most essential thing for an actor to do: listen," Fine said. "At the end of his audition, he smiled and his smile literally lights up a room."
Fine was equally impressed when he auditioned Leyva in person. "The good news was he was wonderful and charming and sweet," said Fine. "In the audition process he broke down and started crying. Through his tears he said, 'The dream of my life has come true.'"
Leyva, now 22, has been a student at the Performing Arts Studio West for adults with disabilities in Inglewood for the last two years. He said he fell in love with acting when he saw the Disney Channel's "High School Musical."
Needless to say, his favorite scene in "Any Day Now" is when he gets a chance to dance.
"I want to do a musical on television," he said in a phone interview.
Posted by BA Haller at 10:07 PM
Saturday, November 24, 2012
WASHINGTON — As Tammy Duckworth sees it, her path to Congress began when she awoke in the fall of 2004 at Walter Reed Army Medical Center. She was missing both of her legs and faced the prospect of losing her right arm.Months of agonizing therapy lay ahead. As the highest-ranking double amputee in the ward, Maj. Duckworth became the go-to person for soldiers complaining of substandard care and bureaucratic ambivalence.
Soon, she was pleading their cases to federal lawmakers, including her state's two U.S. senators at the time — Democrats Dick Durbin and Barack Obama of Illinois. Obama arranged for her to testify at congressional hearings. Durbin encouraged her to run for office.
She lost her first election, but six years later gave it another try and now is one of nine veterans of the Iraq and Afghanistan wars who will serve in next year's freshman class in the of House of Representatives.
Veterans' groups say the influx of Iraq and Afghanistan veterans is welcome because it comes at a time when the overall number of veterans in Congress is on a steep and steady decline. In the mid-1970s, the vast majority of lawmakers tended to be veterans.
For example, the 95th Congress, which served in 1977-78, had more than 400 veterans among its 535 members, according to the American Legion. The number of veterans next year in Congress will come to just more than 100. Most served during the Vietnam War era. In all, 16 served in Iraq or Afghanistan, not all in a combat role.
"We're losing about a half a million veterans a year in this country," said Tom Tarantino, chief policy officer at Iraq and Afghanistan Veterans for America. "We are not going to be in a world where a significant plurality of people spent some time in the military, so to have 16 men and women who fought in this current Congress is incredibly significant."
Tarantino said he recognizes that the 16 Iraq and Afghanistan vets have wide-ranging political views. But at the end of the day, he said, their shared experiences make it more likely they'll put political differences aside on issues like high unemployment and suicide rates among returning veterans, or in ensuring that veterans get a quality education through the post-9/11 GI bill.
Their election victories also provide a sense of assurance to veterans.
"The biggest fear we have as veterans is that the America people are going to forget us," Tarantino said. "When you have an 11-year sustained war, the fight doesn't end when you pull out."
Duckworth carries the highest profile of the incoming vets. She was co-piloting a Black Hawk helicopter in Iraq when a rocket-propelled grenade landed in her lap, ripping off one leg and crushing the other. At Walter Reed, she worried about what life as a double amputee had in store. But during her recovery, she found a new mission — taking care of those she describes as her military brothers and sisters. That mission led her to a job as an assistant secretary at the Department of Veterans Affairs during Obama's first term.
"Had I not been in combat, my life would have never taken this path. You take the path that comes in front of you," Duckworth said from a wheelchair last week as she and her fellow freshmen went through orientation at the Capitol. "For me, I try to live every day honoring the men who carried me out of that field because they could have left me behind, and they didn't."
Duckworth is one of two freshmen Democrats who served in Iraq or Afghanistan. The other is Tulsi Gabbard of Hawaii, who served near Baghdad for a year and was a medical operations specialist. Gabbard said she hopes the two of them can be a voice for female veterans and the unique challenges they face.
About 8 percent of veterans are women. They tend to be younger on average. Nearly one in five seen by the Department of Veterans Affairs responds yes when screened for military sexual trauma.
Seven Republicans served in Iraq or Afghanistan. Most had backing from tea party supporters who share their views that the size and scope of the federal government should be curtailed.
—Ron DeSantis of Florida was a judge advocate officer in the Navy who deployed to Iraq as a legal adviser during the 2007 troop surge.
—Brad Wenstrup of Ohio was as a combat surgeon in Iraq.
—Kerry Bentivolio of Michigan served in an administrative capacity with an artillery unit in Iraq and retired after suffering a neck injury. He also served as an infantry rifleman in Vietnam.
—Jim Bridenstine of Oklahoma was a combat pilot in Iraq and Afghanistan.
—Scott Perry of Pennsylvania commanded an aviation battalion in Iraq in 2009 and 2010.
—Doug Collins of Georgia was a chaplain in Iraq.
—Tom Cotton of Arkansas, a Harvard Law School graduate, was an infantry platoon leader in Iraq and then was on a reconstruction team in Afghanistan. In between, he was a platoon leader at Arlington National Cemetery.
Cotton said the reason he ran for Congress is the same one that led him to enter the Army after the Sept. 11 terrorist attacks.
"I felt we had been attacked for who we are — the home of freedom," Cotton said. "And I worry now our liberty is threatened at home by the debt crisis we face, which in the long term will mean less prosperity and less opportunity, and therefore less liberty."
Cotton said he could easily see himself working with Duckworth and Gabbard on veteran's issues. "They've carried a heavy load and we owe them a great debt," he said.
At the same time, it's clear the freshmen veterans have clear differences of opinion over policy matters. For example, Gabbard is a strong critic of the war in Afghanistan. She says the United States needs to get out as quickly and safely as possible. Cotton opposes setting timetables for withdrawal.
"We're trying to win a counter-insurgency war where we can put a friendly, allied, stable government in place," Cotton said. "It's certainly been a long and somewhat winding road, but on the whole, America and our interests in the world are much better off for having waged the war in Afghanistan."
There also will be differences over spending priorities. Cotton is reluctant to trim spending on defense as a way to deal with the deficit.
Duckworth said certain programs need close examination, particularly in the area of government contracts. She said she "can actually stand up and talk about defense spending in a way that will be realistic without being attacked for lack of patriotism or not being strong on defense."
Posted by BA Haller at 9:57 PM
Friday, November 23, 2012
Dec. 14 release for new film, "Any Day Now," about a gay couple who fights to adopt a teen with Down syndrome
The Hollywood Reporter:
Travis Fine's drama co-stars Alan Cumming and Garret Dillahunt as a couple fighting prejudice while attempting to adopt a Down syndrome-afflicted teenager.Depictions of custody battles have become a cinematic staple, but few register with the heartfelt emotion of Any Day Now. This 1970s Los Angeles-set drama about a gay couple fighting to adopt a Down syndrome-afflicted teenager is only loosely inspired by a real story, but the smart screenplay by director Travis Fine and George Arthur Bloom has the ring of truth. And the issues raised by this film receiving its world premiere at the Tribeca Film Festival remain all too sadly relevant.
The central characters are drag queen Rudy (Alan Cumming) and his new lover, closeted district attorney Paul (Garret Dillahunt). Their sweetly depicted romance is a whirlwind one, with the flamboyant, uncensored Rudy immediately drawing the reserved lawyer out of his shell.
Rudy lives in a rattrap apartment next door to a drug addict mother who habitually neglects her son Marco (Isaac Leyva). When she gets arrested and sent to jail, Rudy impulsively decides to care for the helpless 14-year-old rather than leaving him to the vagaries of the Family Services system.
After the mother agrees to hand over temporary custody to Rudy, he and Marco move in with Paul and they quickly become a loving family, as beautifully etched in an 8mm film montage. But when Paul’s homophobic boss becomes suspicious it doesn’t take long for the authorities to take Marco away, with his newfound parents forced to embark on a battle to get him back in a legal system marked by anti-gay prejudice.
While some of its plot elements feel forced (did Rudy really have to be a drag queen lip-synching disco songs in a gay bar?), Any Day Now nonetheless exerts a powerful hold, with even the most melodramatic scenes handled in effective subtle fashion. And the supporting characters -- including a no-nonsense judge (Frances Fisher), a take-no-prisoners lawyer (Gregg Henry) and a sympathetic special needs teacher (Kelli Williams) -- defy easy stereotypes.
The superb performances add immeasurably to the film’s impact. Cumming, who also gets to show off his vocal abilities, delivers Rudy’s hilariously bitchy wisecracks with estimable comic flair while also revealing his underlying vulnerability. Dillahunt perfectly conveys Paul’s quiet strength, and Levya is deeply touching as the doughnut-loving teen who finds himself a helpless legal pawn.
Besides handling the handling the dramatic aspects with keen sensitivity, director Fine gets the period details exactly right, especially the awful 70’s era wardrobes and hairstyles that leave modern audiences cringing.
Posted by BA Haller at 8:45 PM
What makes Homeland's CIA genius tick? In part, TV writer Meredith Stiehm, who spins material for Claire Danes' fascinating character from her family's experience with bipolar disorder.
If you're fascinated by CIA operative Carrie Mathison's mental illness on Homeland, thank writer Meredith Stiehm. She's responsible for many of the Emmy-winning drama's most emotionally fraught episodes — "The Weekend," "The Vest" (co-written with Chip Johannessen), "New Car Smell" — that delve into the bipolar disorder of Claire Danes' character.
Some of Stiehm's inspiration comes from personal experience: Her sister has bipolar disorder. But Homeland's exec producers Howard Gordon and Alex Gansa didn't know the writer's family history when they asked her to join the show. The 44-year-old Emmy winner's reputation in Hollywood was for writing women in male-dominated fields — see her work on NYPD Blue and Cold Case — and the Showtime drama needed more X chromosomes in its all-male writers' room.
Explains Stiehm, "I became the person who studied...that aspect of the character." Research led her to interview her sister, attend a symposium on the illness, and watch clips of people in manic states.Stiehm's sister was moved to tears by the resemblance between Carrie's experiences and her own. Some scenes are difficult for her to watch, especially in "The Vest," when Carrie spends hours obsessively mapping out terrorist Abu Nazir's plans."Grandiose thoughts are typical of someone who's manic," says Stiehm. A high-stakes work environment like the CIA only compounds the uncertainty. "Is it real or is it happening in [her] head?" she asks. "That's the beauty of Carrie. You don't know."
Posted by BA Haller at 4:09 PM
The Star in Toronto, Canada:
Maze-like campuses, 500-seat lecture halls and life in residence. Hormones and parties. Alcohol and drugs. Sex.
Going to college or university is a big step for any young adult, let alone someone with autism.
Last year, more than 800 students with autism spectrum disorder (ASD) registered for support at Ontario colleges and universities — a number expected to grow as more children are diagnosed and treated earlier.
Most campuses are ill-prepared to serve this new population of often bright, but socially impaired students.
York University has taken an innovative approach with its Asperger mentorship program, which is winning praise from both students and experts.
The program is the brainchild of psychology professor James Bebko, who came up with the idea five years ago while helping the university’s disability office set up peer support for students with Asperger syndrome, a relatively mild form of autism.
Bebko, who has worked with children, adolescents and families affected by autism for 25 years, knows these students need more than just academic support to be successful at university. He thought his graduate students could help.
The program, which pairs psychology students with “Aspie” undergrads, is a win-win proposition. It gives his students practical experience in their field, while helping students with Asperger’s successfully navigate university life.
The ultimate goal is to ensure the dropout rate for students with autism is no higher than average. On that score alone, the program is a success, says Bebko, former director of York’s clinical-developmental psychology program.
“The mentors work with the students on all areas of concern, but the focus tends to be on the social and personal aspects of university.”
In high school, most students with autism are in highly structured programs with very engaged parents monitoring their every move. But in university, there is an increased expectation of independence. This is where students with Asperger’s often get into trouble.
“We have women putting themselves in risky sexual situations without the skills to cope,” he says. “For some students, it’s a challenge just to go to a coffee shop on campus. The needs are so broad and varied.”
Participants usually meet weekly with their mentor one-on-one and once a month as a group for dinner, plays or other activities.
The program has been funded since 2009 by the Counselling Foundation of Canada, which is providing a $224,000 four-year grant. It has served about 50 students since its inception, with 18 to 20 students matched with mentors each year.
Three students have graduated, some have switched universities for other academic programs, but most are still at York, a sign that the program is making a difference.
Bebko hopes a new manual he has written will be a guide for other institutions to follow.
Evguenia Ignatova, 21, joined the program three years ago when she began a degree in psychology. The Russian immigrant, who came to Toronto with her family when she was 4, says her mentor has helped her navigate university bureaucracy, compose emails and handle telephone calls.
“I find sometimes I call places and they don’t give me the right answers,” she says.
When Ignatova was feeling misunderstood by her boyfriend’s mother, she asked her mentor for advice on how to set the record straight.
“My mentor has helped me with emotional difficulties and personal problems,” she says. “Just talking about it has helped. It means I don’t have to burden my friends and acquaintances.”
Ignatova says her biggest challenge at university is communicating with her professors and dealing with anxiety.
“Sometimes when I ask questions, I do not get answers that are clear enough to understand and I worry that if I ask too many questions, the professors will find me annoying,” she says.
“In the past, I struggled with anxiety and depression due to the workload and the isolation that I imposed on myself as a result of my perfectionism about school work,” she says. “Having a mentor has really helped.”
York psychology PhD student Stephanie Brown has been a mentor for three years and also serves as the program’s co-ordinator.
Students have asked her advice on how to talk to professors, disclose their disability to others, and navigate friendships and romantic relationships.
“Sometimes the mentor may be more aware of a problem than the student,” she says. “You might notice the student has four agendas — one for each class — and suggest they might want to consolidate that into one.
“A highly academic student might say they have no concerns, but you notice they have two papers and an exam coming up for which they aren’t studying. Or they may tell you they have spent 14 hours on one paper and you notice they have been ignoring their other subjects,” she says.
On the personal side, Brown has counselled students on how to talk to strangers and stay safe.
She has cautioned female students against getting into a car alone with a stranger. And she has advised male students not to tell women they don’t know that they think their clothing is “really sexy.”
Mentors often meet students in small groups to practise conversation techniques, including how to ask questions that are appropriate and not too personal.
“One of our goals is to create a peer network for the students,” says Brown, 26. “We are mentors and facilitators. But we are not their friends.”
Working with the students has made Brown passionate about them and the program.
“Many individuals with ASD have wonderful strengths and skills,” she says. “They have worked very hard to get here and we should be doing everything we can to help them succeed.”
Posted by BA Haller at 4:04 PM
The Boulder Camera in Colorado:
The three Boulder researchers credited with developing closed captioning never set out to change the lives of the hearing-impaired.
In the early 1970s, Jim Jespersen (pictured), a physicist, and engineers George Kamas and Dick Davis were working in the Time and Frequency Division at the National Bureau of Standards. (The name of the institution was changed in 1988 to National Institute of Standards and Technology.)
The men were studying the spectrum usage of television broadcasts. To increase availability of accurate time signals, they developed a way to hide time codes in broadcast television transmission.
That original project was abandoned because of the emergence of GPS (global positioning system) and other technologies, which proved better in delivering accurate time signals, according to engineer John Lowe of the Time and Frequency division at NIST.
However, the scientists noticed that after the audio and video elements were accounted for, there was still a large portion of the spectrum that went unused, said James Burrus, public information and outreach coordinator at NIST.
The researchers decided to utilize that available space to transmit a printed transcript of dialogue simultaneously with the broadcast. After that was successful, they then developed a way to hide that information for the average viewer. A special decoder was created for those who would be interested in viewing the transcript.
Sandra Howe, an NBS information specialist, practiced the technology with an episode of ABC's "The Mod Squad." The NBS scientists shared it at the National Conference on Television for the Hearing Impaired in 1971. NBS then partnered with the Public Broadcasting Service (PBS), which made improvements to the technology.
The National Captioning Institute, a nonprofit organization, was established in 1979 with federal grant money to add closed captions to network television programs.
In 1980, the television networks ABC, NBC and PBS began transmitting closed captions on programs such as "Three's Company," "Disney's Wonderful World" and "Masterpiece Theatre."
The first children's program with closed captions was "3-2-1 Contact." The 1981 Sugar Bowl marked the first captioning of a live sports event.
Viewers wishing to receive closed captioning at that time could buy a small black box for a little more than $250 at Sears, Roebuck & Co.
In September 1980, the National Bureau of Standards, along with ABC and PBS, received the Emmy Award for outstanding engineering development for the "closed caption for the deaf system" from the Academy of Television Arts and Sciences.
Those involved in the project were invited to the White House to receive congratulations from President Jimmy Carter.
In a Daily Camera story about the award, Jespersen and Davis commented that the thrill of winning an Emmy was decreased a great deal because it was for work done a decade earlier.
In 1990, President Bush signed a bill requiring that all televisions 13 inches or larger sold in the United States after July 1, 1993, possess the capability for showing closed captions.
Today, the closed-captioning Emmy statue is proudly displayed in the lobby of Boulder's NIST.
Posted by BA Haller at 2:40 PM
Thursday, November 22, 2012
You might think you know World of Warcraft, but you don’t know it the way Ian Bates (pictured) does.
Like many of the millions of players of the massively multiplayer online game, the Florida teen obsessed over WoW’s fantasy world. He devoured all the non-fiction books written about Warcraft, and tried his hand at writing fan fiction set in the land of Azeroth.
One day in 2010, when he was 17, Bates was reading another Warcraft novel and noticed that something was out of whack. There was a character described in the plot of the novel, Falstad Wildhammer, that should have appeared within the game’s world, but he was nowhere to be found.
So when Bates went to that year’s Blizzcon, the annual weekend event where developer Blizzard meets its fans, he had one mission. During a Q&A session, he stepped up to the microphone to demand an explanation of the discrepancy from the lead writers of Warcraft lore. Clearly amused but grateful, Blizzard’s story leads promised to fix the plot hole.
Video of the question went viral, earning millions of views. They called him “Red Shirt Guy.” But it wasn’t the color of his clothes or the content of the exchange that caused people to share the question, it was Bates’ cringeworthy awkwardness: the stammering, the unusual rising and falling pitch inflections of his voice, and the intense concentration on remarkably minute details.
Bates has Asperger’s syndrome, an autism spectrum disorder that he says makes him feel extreme anxiety in certain social situations. Speaking at that microphone, he said, was one of the hardest things he’s ever done. His voice sounds “robotic and weird” if he has to initiate a conversation, Bates says. I point out that he seems comfortable talking to me on the phone. “You started talking to me first,” he says, matter-of-factly.
For many gamers with autism, MMOs are a double-edged sword, according to experts interviewed for this story and anecdotal evidence from the gaming community. The extremely complex game systems can be particularly attractive to the autistic mind’s love of minute details. And for gamers dealing with social interaction problems, MMOs can let them talk to people in more abstract, less stressful environments. But their addictive nature and social elements might also cause players with autism spectrum disorders anxiety, fear, or paranoia.
“The predisposition of people with [Asperger's] to develop restricted special interests may put them at greater risk for withdrawing from ‘real life’ in favor of playing the game,” says Chloe Jordan, a behavioral neuroscience specialist at Boston University.
Psychologists say games and autism can result in a vicious circle — but that if used in the right way, they might be very helpful.
About one in 88 children are affected with an autism spectrum disorder, according to the Centers for Disease Control. Males are five times as likely to have it. Different conditions exist within the autism spectrum, and the severity can vary wildly, but generally suffers have difficulty communicating with other people and forming relationships, and challenges dealing with language and abstract concepts.
Because people with autism spectrum disorders tend to show more interaction with objects than with people, they may be more attracted to videogames, says Julie Crittendon, a psychologist at Vanderbilt University in Nashville. People with autism, Crittendon adds, can also process information far more quickly if it’s presented in a visual way.
“So if you have autism, you find your way to video games, and you find that you’re really good at them,” she says.
Additionally, those with Asperger’s syndrome are often very good at understanding systems, notes Jordan. That could create a special attraction to complex games like MMOs that reward mastery of many different elements.
“A person with [Asperger's] might be really good at figuring out how to best outfit his character by studying the statistics, strengths, and weaknesses behind different kinds of weapons and armor, since this involves understanding rules and manipulating a system,” says Jordan.
But, Jordan says, MMOs could also pose something of an addiction risk to players with autism spectrum disorders. Aspects of a game that could become highly addictive include having to complete daily tasks, or spend an inordinate amount of time increasing a character’s level.
Posted by BA Haller at 4:16 PM
Wednesday, November 21, 2012
am New York:
Evacuating during Hurricane Sandy was a nightmare for the able-bodied, but many disabled New Yorkers felt a frightening level of despair and abandonment.
During disasters like Hurricane Sandy, "disabled people are really left to die. . . .It's really survival of the fittest," said Reginald Ragland, 59, who relies on a power wheelchair and is still living in a Middle Village nursing home while he waits for heat and hot water to be restored in his NYCHA apartment in Far Rockaway.
There's no official count of disabled people who died in the latest storm, but their stories are prominent in the news: John Paterno, 65, a legally blind man with cerebral palsy who was partially paralyzed, drowned in his Midland Beach home. Family members watched helplessly as Herminia St. John, 75, perished in her Gramercy Park apartment when the power outage stopped her oxygen machine.
While statistics are scant concerning disabled people, they are tabulated for the elderly, many of whom have mobility and sensory impairments: While people over the age of 60 made up only 15% of the population of New Orleans, they comprised 73 percent of the fatalities in Hurricane Katrina, according to the AARP. And at least 22 of the 43 confirmed Sandy deaths logged by the Medical Examiner were of people 65 or older.
No one looks at "the demographics of death," in regards to the disabled, in part because the definition of "disabled," is so mercurial, said Robert Gorski, Accessibility and Disability Issues Coordinator for the City of Pasadena. But it is common sense to know that anyone who can't see, or hear, or walk, or has a mental disorder is at double disadvantage during a disaster he said.
A spokesperson for the city said it has a special needs coordinator in the Office of Emergency Management and that feedback from advocacy groups is incorporated into planning efforts and an outreach program to inform New Yorkers during emergencies. But even some who got the warnings were caught in a bind.
Ragland did everything he could to obey Mayor Michael Bloomberg's directive to evacuate his Zone A residence before Sandy descended. He knew he might wind up dead if he didn't.
Ragland, who lives on the sixth floor of the Ocean Bay NYCHA complex in Far Rockaway, can hobble upright for a few steps, but relies on a power wheelchair due to a surgery that damaged his spinal nerves and causes muscle spasms. He also has a brain tumor that requires a complex medication regimen. The weekend before Sandy, NYCHA employees stopped by his apartment to give him fliers about the impending storm, but had no information on accessible shelters, he said.
When Ragland called 311, he said, "they tried to put me though to the Mayor's Office for Disabilities, but it was just a busy signal." He called FEMA and got a recording saying no one was available to take his call.
NYCHA said in a statement its staff made "a special effort to reach out to and assist those who are frail, impaired or mobility challenged, which number about 4,000 residents. . . . When there is an emergency (storm, outage), etc, we contact all the people on these lists of the impaired or mobility-impaired either by phone or in person. "
Unable to locate an accessible shelter, "I was really panicking," said Ragland, so he called 911 saying he felt sick and wanted to be taken to the hospital. But "ambulances aren't equipped (to transport) power wheelchairs. They said if I took my fold up one, it would probably get lost," so he reluctantly left both behind. Physicians at St. John's Hospital pronounced him well enough to leave on Monday and arranged a car service to take him to a shelter at York College, but he was turned away at the door. A doctor at the shelter "said they didn't have the means to take care of someone like me," recalled Ragland, who was taken back to the hospital in the middle of the storm. The St. John's staff called around until the Dry Harbor Nursing Home consented to take him in.
In many cases, individual citizens rallied to do the job that government did not.
Crippled in a shooting two years ago, 39-year-old Kenneth Martinez said he never imagined he might die by remaining in his Far Rockaway apartment during Sandy, but insisted he would have left if he were offered a place to stay that could accommodate his motorized wheelchair.
"I knew the storm was coming, but where was I going to go?" he said.
After the lights flickered out, Martinez managed to find a flashlight, but the tide that rushed into his home was ravenous. Filthy, freezing, turbulent water surged up his one leg, then gobbled up his torso. He managed to make a call to his partner, Michelle Medina, pleading for help, but his phone died in the middle of his description of the rising waters.
Medina, who was on Long Island, repeatedly dialed 911 but the three-digit number rang busy or went dead. Then she called 311. Operators there said they'd pass on the information to have Martinez evacuated. Medina also called relatives in NYC begging them to call 311, too, to stress how urgently Martinez needed help.
While his wheelchair remained in the living room, "the water floated me up to the kitchen." He struggled to stay afloat in the rising waters by windmilling his arms. Martinez began banging desperately on the ceiling - now within his reach - with his flashlight.
Hearing the knocks, his upstairs neighbor, Chris Francis, and two other men bashed out a window and rescued him..
"Those good guys upstairs risked their lives to save me," Martinez gratefully recounted. The trio carried Martinez upstairs to a vacant apartment, where he spent two nights swathed in insulation plastic to keep warm, before Medina could return to take him to her mother's house in Levittown. Medina and Martinez, who have two daughters, lost everything they owned. His new $27,000 prosthetic leg was swept away in the receding waters, but the loss most sorely felt for Martinez is his motorized wheelchair, which remains in the apartment but is unsalvageable. "I feel like I'm trapped," said Martinez, who is now facing a frustrating series of bureaucratic hurdles to replace it. . "That wheelchair was my legs."
Good Samaritans also helped save the life of Nick Dupree, 30, of TriBeCa, (pictured) who relies on a ventilator connected to his neck to breathe, and a number of other electricity-dependent devices, such as a lung-suction machine and feeding pump.
Dupree, and his partner, Alejandra Ospina, who is also in a wheelchair, are disability activists. They had stockpiled two extra batteries for Dupree's ventilator, but had no way to charge them. Shortly after the power failed and the land-line in their apartment went dead, Ospina and a friend managed to transmit a few texts indicating they needed help.
Their pleas quickly went viral. A Google document was created to set up shifts and arrange rides for Dupree's nurses. A group called Portlight Strategies came up with money to buy car and marine batteries for Dupree's medical equipment. About 25 friends and friends of friends formed an ad hoc fire brigade that trotted the batteries - which last about three hours - from their 12th floor apartment to the nearby Engine 7 Ladder 1 Fire House, where they recharged them and back up again. People streamed into their home bearing plates of food and medical supplies.
The support - much of it from strangers - was incredibly heartwarming, said Ospina. But, she added, "the government needs to step up so we don't have to put ourselves at the mercy of our community."
People with disabilities differ dramatically in what they would like the government to do to help them. But at a minimum, many said, there should be accessible shelters that are well-publicized to those who need them, along with accessible transportation that accommodates power chairs, and registries to help emergency personnel.
"Do the police know I'm here? Do the fire people?" wondered Milagros Franco, 36, of Gramercy Park, who is in a wheelchair and remained in her blacked-out home for three days with the help of a friend.
The problems that many disabled people encountered during Hurricane Sandy and last year's Hurricane Irene are being litigated in a lawsuit called Brooklyn Center for Independence of the Disabled v. Bloomberg.
Earlier this month, a federal judge granted class-action status to the plaintiffs, who contend that the lack of a comprehensive plan for the evacuation of people with disabilities puts them at a disproportionate risk of injury and death.
Martha Calhoun, senior counsel for the NYC Law Department's General Litigation Department, said in a statement that city intends to vigorously defend itself.
"The City's Office of Emergency Management is a nationally recognized leader in emergency preparedness," she said. "The city's emergency plans have been carefully developed in order to effectively serve the needs of all New Yorkers, including individuals with disabilities."
Posted by BA Haller at 7:34 PM
Tuesday, November 20, 2012
Author's childhood with dyslexia, stories on deaf community lead to book about children who have little in common with their parents
The NY Times:
Andrew Solomon’s enormous new book, “Far From the Tree: Parents, Children, and the Search for Identity,” is about children who are born or who grow up in ways their parents never expected. It’s a subject Mr. Solomon knows from experience. He was dyslexic as a child and struggled to learn to read. As he described in “The Noonday Demon,” which won a National Book Award in 2001, he once suffered from crippling, suicidal depressions. And Mr. Solomon is gay, which made his parents so uncomfortable that as a teenager he visited sexual surrogates in the hopes of “curing” himself.Mr. Solomon, 49, is also different — different from most writers, anyway — in that he is independently wealthy and lives in baronial splendor in a West Village town house that once belonged to Emma Lazarus, who, though she wrote about those poor, huddled masses, was not herself among them. The book party for “Far From the Tree” was held not in some editor’s cramped Upper West Side apartment but at the Temple of Dendur at the Metropolitan Museum of Art, where Mr. Solomon has recently been named a trustee.William Davis, the father of an autistic son and one of the hundreds of parents and offspring Mr. Solomon interviewed for the book, recalled recently that he was a little taken aback when Mr. Solomon arrived at his home in Pennsylvania in a chauffeur-driven car. “But Andrew has a way of eliciting your true feelings,” he said. “You just trust him. You immediately want to pour your heart out to him.”He added: “He’s living in a different world from the one I’m used to, but it’s not a problem, because he doesn’t try to hide it. He’s not trying to be one of the guys. But you can tell he cares. You just want to hug him.”Sitting in the kitchen of his town house, occasionally raising his voice over the strident chirping of a canary named Barack — who flew in the window one day, recognized a nice situation and never left — Mr. Solomon explained that “Far from the Tree” took 11 years. It stemmed from a 1994 article about deafness he wrote for The New York Times Magazine. In the course of reporting it, he said, he realized that many issues confronting the deaf are not unlike those he faced as someone who was gay. A few years later, watching a documentary about dwarfism, he saw the same pattern again.Eventually the book grew to also include chapters on Down syndrome, autism, schizophrenia, disability, prodigies, transgender identity, children who are conceived during a rape and those who become criminals. His file of transcribed interviews swelled to 40,000 pages, and the version of the book he originally turned in to his publisher, Scribner, was twice as long as it is now.He called in the services of Alice Truax, a freelance editor, and together with Nan Graham, editor in chief and vice president of Scribner, they whittled it down to 700 pages, not counting notes. In an e-mail Ms. Truax said that she rarely cut entire families but rather tried to compress their stories.“Andrew and I were keenly aware of the cost of being involved in the project for the families who had participated,” she explained. “Many of them had given enormous amounts of not only time but emotional energy to the book, and we both felt strongly about honoring that as much as possible.”Mr. Solomon said he included criminal children after deciding that society’s thinking on the subject hadn’t really advanced very much, even while it has on autism and schizophrenia. “We still think it’s the parents’ fault if a child becomes a criminal or that something creepy must have gone on in that household,” he said. He included the children of rape because he discovered that their mothers shared a lot with all the other mothers in the book. “They feel alienated, disaffected, angry — a lot of the things a mother feels about a child with a disability.”This kind of commonality, he went on, was something he discovered only while writing. “Each of the conditions I describe is very isolating,” he said. “There aren’t that many dwarfs, there aren’t that many schizophrenics. There aren’t that many families dealing with a criminal kid — not so few but not so many. But if you recognize that there is a lot in common in all these experiences, they imply a world in which not only is your condition not so isolating but the fact of your difference unites you with other people.”His other great discovery, he added, was joy. He had been prepared to encounter sadness in the families he visited; what surprised him was how much love there was. “This book’s conundrum,” he writes, “is that most of the families described here ended up grateful for experiences they would have done anything to avoid.”Reviewing “Far From the Tree” in The Times, Dwight Garner said, “This is a book that shoots arrow after arrow into your heart.” But it’s also a frightening and disturbing book. Its chapters are a vivid catalog of all the things that can go wrong in giving birth to and then bring up a child, and also raise difficult ethical questions: whether it’s proper to give cochlear implants to deaf children or to subject dwarfs to painful limb-lengthening surgery, for example.But Mr. Solomon said that working on the book had emboldened him and his husband, John Habich, to have a child, something he had been ambivalent about before. Their son, George, born to a surrogate mother, is now 3 ½.“Forewarned is forearmed,” he said. “Some things, on some scale, go wrong in everyone’s life. I think I have perfectionist tendencies, but I know you can’t go into parenthood thinking, ‘I’m going to love my child as long as he’s perfect.’ Rather, it should be, ‘I’m going to love my child whoever he is, and let’s see how he turns out.’ ”Mr. Solomon — the kind of parent who is apt to give dramatic readings of storybooks — added that being a father has also made him more forgiving of his own parents. “If you’re confronted with a child who’s different, you have to go through this long process of learning to accept and perhaps celebrate the differences in your child,” he said. “The acceptance piece is hard. Part of what I learned from this book is that even for parents who do really well with these issues it’s hard. It was hard for my parents, and that made it harder for me, but I no longer see this as an unacceptable and startling flaw. I just see it as being the way it is.”
Posted by BA Haller at 11:20 PM
Monday, November 19, 2012
The Miami Hurricane, student newspaper at the University of Miami:
David Leal (pictured), who lost the ability to walk when he was 8 years old, lives through the characters in his graphic novel.
Leal, 31, teamed up with UM alumna Corinne Nicholson, a freelance editor and writer, to finalize his manuscript. For two years, Nicholson has helped him revise and polish the story he conceptualized.
“She’s my hands,” said Leal, who uses a ventilator to speak and can articulate an average of three words at a time.
Leal has muscular dystrophy, a degenerative disease that has disabled the use of his arms and legs. However, already 30 chapters into his manuscript, he hasn’t let the disease stop him.
The novel “Eternal Radiance of Romance” will be published in six parts. It is about a man, a character based on Leal himself, who is stuck in a love triangle with a maid and a singer in modern-day Japan. Leal hopes to finish the first part by May.
“I decided to write the story so I could live through my characters and do things I would have done in my life, like swimming, walking and doing things a normal person would do,” Leal said.
Leal remembers a time when he could walk but would frequently fall. Then, one day in elementary school, he couldn’t get out of his chair.
“I can’t let that get to me. That’s why I always move forward,” he said. “I just keep moving no matter what. If I fall down, I get back up again.”
The improbable bond
Thirty-six-year-old Nicholson, who graduated from UM in 1998 with a bachelors degree in business administration, was supposed to help Leal with the novel’s character and plot development for six weeks – but she’s been working with him for two years.
“My profession – my passion – saves my life,” Nicholson said. “It preserves my livelihood.”
Nicholson runs a referral-based business and sees up to 14 clients on a regular basis, several of whom are UM students. She helps with graduate school applications, edits dissertations, writes grants and also considers herself a writing arts therapist.
Nicholson said she does the work for herself and her clients, but never for the money.
“I learned a long time ago that even in business in this world, there always has to be a heart,” she said.
Nicholson dropped her fees for Leal because she knew it was going to be a labor of love. At the same time, however, she made a conscious effort to treat him like her other clients.
“My main concern was not his disability,” she said. “It was his ability to write.”
From words to art
Five nurses who provide around-the-clock home care helped Leal transcribe his work even before he met Nicholson.
“We used to be his voice, but David’s learning to be his own voice,” said Maria Barroso, one of his nurses.
Soon, Leal met artist Alfonso Garcia, 24, at an anime convention and hired him to convert the piece into a graphic novel. Garcia uses pencil and marker, and most of the illustrations are in black and white. However, some will be in color to highlight significant scenes.
“He draws what I see in my mind,” Leal said.
Garcia, who has a slight learning disability, said he feels he was meant to meet Leal and Nicholson.
“We all have something in common: We’re all artists,” Garcia said.
Although Leal was only expected to live to 21, he said there’s still a lot he wants to accomplish in his life. These goals include studying creative writing in college, being in a Pitbull video and giving back to the world.
“I want to be like Jesus, to help people so they never give up in life, no matter what happens,” Leal said. “I want to do something, make an impact on the world. I want to do more.”
Religion has always played an important role in Leal’s life. He believes God brought him his voice. His speech has improved since he began working with Nicholson.
Leal is currently garnering support for his novel through the Facebook group “David’s Anime Otakus.”
“If anybody deserves to walk and jump up and down, he does,” Nicholson said.
Posted by BA Haller at 10:47 PM
The A.V. Club.
Posted by BA Haller at 10:20 PM