More colleges provide options for students with learning disabilities, autism spectrum disorder

From The AP:

As he sits in class at Eastern Michigan University, a flood of images streams from Tony Saylor's vibrant, creative mind down through his pen and onto paper.

Often, his doodling features the 9-year-old character Viper Girl who battles monsters with her pet fox Logan. Saylor, 22, (pictured) has even self-published three books of their adventures.

Saylor's professors didn't exactly welcome his constant drawing, but once he explained it was the only way he could hope to process their lectures — and even to stay awake — most let him continue.

For college students with autism and other learning disabilities, this is the kind of balancing act that takes place every day — accommodating a disability while also pushing beyond it toward normalcy and a degree, which is increasingly essential for finding a meaningful career.

But Saylor and a growing number like him are giving it a shot. Students who would once have languished at home, or in menial jobs, or struggled unsuccessfully in college, are finding a new range of options for support services to help.

"I knew I didn't want to work in the fast food industry my whole life," Saylor said, sitting at the kitchen table of his family's home in this Detroit suburb, where he lives while commuting to EMU. His mother, Angela Saylor, says a 3-year-old program at EMU that supports autistic students — a graduate student who works with the program attends all his classes with him — has been a godsend.

Such programs within traditional universities, offering supplemental support for additional tuition, are sprouting up around the country (Nova Southeastern University in Florida is among the schools starting one this fall). "The K&W Guide to College Programs for Students With Learning Disabilities or AD/HD" has grown steadily since its precursor was first published in 1991, and now lists 362 programs, the majority of them now comprehensive services.

Meanwhile, other parts of the landscape are also expanding. College disability service offices (whose help is usually free) are also improving. Care centers, often for-profit and unaffiliated with colleges, are popping up near campuses and offering supplementary support. Finally, institutions with a history of serving large numbers of students with learning disabilities are growing, some adding 4-year degrees.

"This is the best time ever for students who learn differently to go to college," said Brent Betit, a co-founder of Landmark College in Vermont, which opened in 1985 with a then-unique focus on such students and now has a range of competitors. Among those Betit mentioned: programs within the University of Arizona and Lynn University in Florida, plus Beacon College, also in Florida, which like Landmark has a comprehensive focus on students with disabilities.

"There are better programs available than at any time in history," Betit said. "I think that's in part because of the entrepreneurial nature of the United States. When there's a need out there, and a business market available, people respond."

But the new players also bring new challenges. Families who would once have struggled to find options struggle to choose among them. Some experts, meanwhile, are concerned about the growth of for-profit providers, sometimes charging $50,000 or more. There are also concerns some enrollment-hungry colleges themselves are starting these high-priced services to attract students with disabilities, but lack the expertise or financial commitment to offer what they truly need.

That's what happened to Saylor, who spent two miserable years at a design and technology-focused school in Flint before learning about EMU's new program from his sister, a student there.

"We were led to believe there was more support than there was" at the previous institution, said his mother, who found herself having to constantly help Tony from afar. Tony says simply: "It was horrible."

"There's really no standards" for such on-campus programs, said Jane Thierfeld Brown, a longtime educator in the field and author of three books, including a college guide for autism spectrum students. Some "are just seeing dollar signs."

Another problem: These highly personalized services are expensive. Unlike in K-12, there's no legal right to a free college education for disabled students. So far, the expanded options mostly benefit those who can afford to pay out of pocket.

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A study last year in the journal Pediatrics found about one-third of young people with autism spectrum disorders attended college in the first six years after high school, and the numbers are certainly growing. About one in 88 children is diagnosed with a disability on the autism spectrum, according to the advocacy group Autism Speaks. More broadly, federal data show more than 700,000 U.S. undergraduates with some kind of disability, including cognitive and physical impairments, on college campuses (about 31 percent with specific learning disabilities and 18 percent with Attention Deficit Hyperactivity Disorder).

Virtually all colleges now enroll at least some students with learning disabilities — 56 percent have students with autism spectrum disorder and 79 percent with diagnosed ADHD.

But the transition from high school can be rough. Federal law requires K-12 schools to provide customized support that will help students succeed. College students enjoy a vaguer right to "reasonable accommodations" that requires less of institutions. And college students have to ask for their help — a challenge for many because poor self-advocacy skills are part of their condition.

As success stories, schools point to students like Katie Fernandez, who struggled desperately through high school in Connecticut with what was eventually diagnosed as an information processing disorder.
"I studied and studied and nothing was happening," she describes it.

Still, Fernandez cried when she first visited Dean College outside Boston, a school where the president estimates close to half of students arrive with either a diagnosed or undiagnosed learning disorder.

"I said, 'I'm not coming here, I'm not going to be labeled one of those special ed kids,'" Fernandez said.
But she did come, and after one semester felt at home. The prevalence of students facing similar challenges made for an accepting atmosphere. A supplementary academic coaching program helped, and while the coursework was all college-level, many classes were taught in small settings tailored to students' particular challenges.

The professors were also used to working with such students, and were familiar with the new technologies that are starting to transform teaching students with cognitive impairments (for Fernandez, one of the simpler ones was among the most helpful: a "pulse pen" that records audio as you write and lets students later sync their written notes and the teacher's accompanying words when they review).

In 2012, her senior year, Fernandez was retested. She was stunned by the results, and a little scared: She no longer showed a learning disability. That meant no more extended time on tests, which left her fearful for her upcoming GRE exams. But she was accepted into a graduate program in higher education administration and is now pursuing an advanced degree.

"I basically learned how to compensate for my weaknesses and my learning differences, which was the goal all along," she said.

Dean says about 75 percent of its associate's degree students persist to a degree at Dean or after transferring; the rate is slightly lower for bachelor's students. Landmark says roughly 80 percent persist to graduation there or elsewhere. Such figures are better than the national averages for all students. Experts say students with disabilities often take substantially longer than the traditional 4-year target, but they are remarkably persistent.

Still, there are no illusions the work is easy or success guaranteed. "College is not for everyone," says Dean's president, Paula Rooney. She recounts difficult conversations with parents up front about what's achievable. Still, she says, Dean is full of students on whom the system would once have given up.

Jim Meinen, a management consultant from North Oaks, Minn., whose 20-year-old son Will has struggled with ADHD since elementary school and now attends Landmark, says the family was "passionate about getting him a higher education."

"Our underpinning belief is any student, young adult with a learning difference, has potential," he said. But "we knew he would struggle as a mainstream student at most colleges" and chose Landmark for its tight safety net for students who struggle to advocate for themselves.

Will is starting his third year at Landmark, pursuing an associate's degree. The college is unrolling its first four-year program, and he may stay on. The goal, Meinen said, isn't a degree per se but a meaningful life. But, he added, a degree "increases the probability of a meaningful life. It opens up the options."

Tuition plus room and board at Dean runs close to $50,000, and the supplementary services can tack on another $7,000 or more. The college runs a handsome but no-frills campus, which Rooney says lets it give most students financial aid.

Betit, the Landmark co-founder, says there is also aid available but acknowledges his school (base tuition, room and board: $59,930) is among the handful of most expensive colleges in the country, and that low-income students are not yet fully benefiting from most of the expanded options nationally.

EMU's program charges its 12 students between $4,500 and $7,500 per semester, on top of regular tuition ($9,364 in-state). That appears to be within the common range for programs within traditional universities. In some places, state programs may help cover some costs.

Another option is for-profit programs that support students while they're enrolled in nearby institutions. One such program, College Living Experience, has six locations around the country. It charges $43,500 for its full program, which could include everything from intensive academic support to basic life and social skills training. Company president Stephanie Martin says the necessary help simply isn't available at many colleges.

"Many of the students who go to college who don't succeed, it's not because they can't do the academic work," she said. "It's the other aspects of their life that get in the way."

Still, Pamela Lemerand, director of clinical services at EMU's Autism Collaborative Center, says there are advantages to on-campus programs.

"We're in the fabric of the university," she said.

Educators in this field say they're hopeful, and their institutions, once deeply skeptical such students could succeed, are increasingly embracing their work. But they say it still requires painstaking one-on-one labor and extraordinary patience.

"Parents have expectations that A, B or C is going to happen in that order," said Julie Leblanc, director of the Morton Family Learning Center at Dean, and an alumna of the college. "We know in this business that sometimes it doesn't happen that way, and sometimes it's best it doesn't happen that way."

Every student is different, but the fundamental challenge is often the same. In high schools, many students come to rely on parents for everything from dressing themselves to packing lunch to making sure homework gets done. In college, the focus shifts to developing self-reliance — which sometimes means pushing them with tough love.

"I can say, 'What's it going to be like if you're 40 and still living with your mom?'" Lemerand says.

Tony Saylor isn't sure what the future holds. The immediate plan is to keep living at home. He admits his shyness and awkwardness have made it hard to make friends outside class. And he sounds like a lot of college students these days when he says he isn't sure what his degree (children's literature and theater) will offer him, only that he'll be better off than without it.

Angela Saylor says she's grateful for what EMU has offered, but knows how lucky she was to come across the program, and how hard it can be for others to find a good fit.

"I see more information becoming available," she said. But still, "given the statistics on the number of people being diagnosed with autism," she said, "they're going to have to come up with more options."

NPR: Actors With Disabilities In Big Roles? 'We Don't Have A Chance'

From the NPR Code Switch blog:

If you watched Ironside this week on NBC, you probably noticed the differences between the new detective show and the original that preceded it. The first show ran from 1967-1975 and starred Raymond Burr, best known for his starring role as lawyer Perry Mason in the '50s and '60s. The current show — producers prefer to call it a remix rather than a reboot — stars Blair Underwood, who is Burr's opposite in almost every way. Burr's chief detective, Robert T. Ironside, who was injured while on duty, was careful, deliberate and stoic about being a paraplegic. Underwood's Ironside is volatile, spontaneous and mad as hell that a bullet also has landed him in a wheelchair.

The original Ironside was set in San Francisco, and the city was as much a character in the show as the detective was. The remix moves the action to New York, which so far seems incidental. Burr (who died in 1993) is white; Underwood is black.

The things that remain the same in both series are the wheelchair Ironside uses and the fact that both actors chosen to portray him are/were fully ambulatory. And that angers a number of actors who use their wheelchairs on and off screen. They say no offense to Underwood, but the time for having actors without disabilities play actors who have them is past.

"I know this makes a lot of people upset, but I liken it to white actors going onstage in blackface," says Larry Sapp. Sapp was a successful music video producer for years before an injury left him a paraplegic. But even though studios were sometimes interested in his scripts — which usually featured an actor, like himself, in a wheelchair — they wanted to change the principal character.

" 'We can make the guy in the chair a friend or something — but the principal?' " Apparently not.

"Actors with a disability [are only allowed to] play characters with a disability," Sapp says. "But then when those characters with a disability come up, they only hire able-bodied actors." It's a hugely frustrating Catch-22. "We don't have a chance to honestly portray ourselves in TV and movies."

So we see Tom Hanks as developmentally disabled Forrest Gump. Or Tom Cruise as Vietnam veteran Ron Kovic, who wheeled his way into war protest history. Or Daniel Day-Lewis as Irish poet and artist Christy Brown, who was able to use a few toes of his left foot to write and paint. All three men were nominated for Oscars for those performances. And they're part of a long line of actors, from Patty Duke's depiction of Helen Keller in The Miracle Worker to Kevin McHale's portrayal of Artie Abrams, a paraplegic high school student in Glee, who play disabled but who are not.

Actors who actually have disabilities should be considered for those roles, says Sapp. So he created to advocate for them.

Teal Sherer is a paraplegic actor and says she doesn't want roles reserved for her because of her disability — but she does want to get a call to read for parts, including ones not specifically intended for actors with disabilities. "If we lose an opportunity to audition, then we lose an opportunity to move forward in our career," she explains.

Sherer created My Gimpy Life, a Web series that illustrates the often absurd challenges disabled actors face in the entertainment industry. In one episode, "Inspiration," she points out how patronizing people often are to their colleagues in wheelchairs. (Warning: This episode has words and subjects that are not suitable for family viewing. Sherer is to the point, but things get a smidge crude for a moment here and there.)

Another episode, "Two Shades of Teal," shows how the industry's well-intentioned but slapdash efforts at inclusiveness sometimes pit one kind of diversity against another. Sherer explains to a friend that a diversity showcase is when "everyone in LA except the cast of Friends" get called in to audition. So she's competing against a whole gumbo of difference — ethnic actors, actors in wheelchairs, little people.

Scherer and others admit there has been some progress. Peter Dinklage won an Emmy and a Golden Globe for his portrayal of Tyrion Lannister, the small son of a ruthless noble in HBO's hit Game of Thrones.

Dinklage's highly nuanced interpretation of Lannister — his sharp social observation and archly bitter resignation to being a dwarf — have made him a star.

NBC has committed itself to airing three series starring disabled characters this year: In addition to Underwood's Ironside, the network is airing Growing Up Fisher, a mid-season family comedy that features J.K. Simmons (The Closer) as a newly divorced father who is blind. And there's The Michael J. Fox Show. It features Fox (Family Ties, Back to the Future) as a New York TV news anchor who leaves the business when his tremors from Parkinson's disease become evident, only to return to it after he's driven his family crazy for several years as a Type A, stay-at-home dad.

Fox is the only actor among the three who actually has the disability he's portraying on television.

But Danny Woodburn (pictured), an actor and disability activist, says that has to change. Actors with disabilities are less willing to be marginalized, he says. And their numbers are growing, which means sooner or later, people are going to have to pay attention. The U.S. Census Bureau says about 1 in 5 Americans has some kind of disability. Injured vets from the wars in Iraq and Afghanistan are swelling those numbers even more.

Those numbers mean that more and more of us will have or know someone who has a disability. Given that, Woodburn says, "There's no excuse for under-representing us" on the small and large screens.

'Breaking Bad' star R.J. Mitte joins 'Switched at Birth'

From The Hollywood Reporter:

Switched at Birth has added another major player.

Breaking Bad star R.J. Mitte (pictured), who just wrapped his run on the critically acclaimed drama, has been cast in a recurring capacity in the 20-episode third season of the Peabody Award-winning ABC Family drama, The Hollywood Reporter has learned.

He will play Campbell, a pre-med college student paralyzed by a snowboarding accident who works at the free clinic alongside Daphne (Katie Leclerc).

Creator Lizzy Weiss also tweeted out the casting Thursday morning to her followers on Twitter, writing, "We are thrilled to have him."

Mitte's breakout role was portraying Walt Jr., aka Flynn, on Breaking Bad for the entirety of its run, which drew a monster 10.3 million viewers to its Sept. 29 series finale. Other credits include a guest spot on Vegas.

He is repped by Bauman, Redanty & Shaul and Main Title Entertainment.

Switched at Birth returns in January 2014.

UN report says more information and communication technologies needed for people with disabilities

From SciDevNet:

A report by the UN agency for information and communication technologies (ICTs) and its partners has mapped out the necessary steps to making ICTs suitable for, and available to, people with disabilities.

ICTs already help people with disabilities participate more fully in society, both economically and socially. Yet challenges remain, says the report, released during a side event at the High-Level Meeting on Disability and Development at the UN Headquarters in New York last week (23 September).

The report identifies the barriers that people with disabilities experience in accessing and using ICTs such as web services, mobile devices, television, electronic kiosks such as ATMs, and computers.

The barriers include the cost of making ICTs accessible — the price of the technology as well as training and support for using it, and the cost assessing the person's requirements — and poor implementation of policies to foster the creation of accessible ICTs.

The report outlines action to be taken by groups such as governments, the private sector, civil society organisations and the UN.


It suggests that governments update disability legislation to include ICTs and include accessibility requirements in their procurement policies, as well as promote the availability and affordability of accessible ICTs and assistive technologies.

The UN and other international organisations should work to meet disability-inclusive development goals, as well as monitor efforts at the global, regional and national levels, the report says.

The private sector's role should be to increase efforts to develop accessible ICTs, as well as addressing the shortage of professionals with ICT accessibility skills, says the report. And civil society organisations should raise policymakers' awareness of barriers to accessibility.

"Policymakers both in developing and developed countries can use this report to get an up-to-date picture of the issues at the intersection of ICTs, disability and development," says Amal Kharbichi, ICT accessibility programme officer at the Switzerland-based International Telecommunication Union, an agency of the UN.

Kharbichi tells SciDev.Net that support for assistive technology is "extremely weak in most developing nations" and that the assistive ICT solutions are still too costly.

Hemlata, deputy director of the National Centre for Disability Studies at India's Indira Gandhi National Open University, describes the report as comprehensive and relevant.

She tells SciDev.Net that other challenges facing ICT accessibility include "affordability and availability at the small town and village level" and "lack of efforts in taking the technology from the lab to land".

Solutions to help disabled people in developing countries access ICTs should be cost effective and robust, and account for unreliable electricity supplies in rural areas, she says.

But Ahmed Fathy Alsaka, a physically disabled student at Egypt's Industrial Technical Institute, tells SciDev.Net that the UN meeting is merely a "talking shop" that will enhance the use of ICTs for disabled people "only on paper".

"As ICTs are providing lifeline services for us, we are looking for fully funded initiatives in poor communities to promote the development of innovative and comprehensive ICT solutions, as well as facilitating access to them," he says.

> Link to full report

Accessible Designs Could Help Us All — But Only If Firms Bite

From NPR:

Here are the basics about Alex Blaszczuk: She lives in Manhattan. She's 26. She has a 20 pound cat. She's a third year law student at Columbia University. And about 18 months ago she broke her neck.

Blaszczuk (pictured) sometimes jokes that she wishes she'd done it bungee jumping. At least then she says she would have a better story.

"It was interesting. In the rehab floor I was on, I was the only woman because everyone is usually injured doing some kind of fun, extreme sport or diving," she says.

Blaszczuk was rear-ended by a car.

Spinal injuries are quirky. And in many ways, Blaszczuk says she's lucky. She isn't on a ventilator. She can move her shoulders. Still, the accident left her unable to do some of things she used to take for granted — things she loved, like taking pictures, turning the pages of her law school text books, writing with a pen, walking.

"I'm not that techie, but I have a lot of friends who are, and especially since my injury I feel like I get 15 e-mails a day that are like 'Have you heard about this crazy new thing that might help you?' " Blaszczuk says.

Many new technologies today promise to give us all superhero-like powers. We live in a world where endless facts and figures are at our fingertips. Self-driving cars promise that soon even your spouse could have an unerring sense of direction.

For the disabled, this kind personal, high-tech augmentation could open up new worlds — but only if the technologies are designed to be accessible. And many companies have yet to embrace the commercial opportunities.

Still, for Blaszczuk, technology has at times been liberating, like when she got an iPhone.

"It opened the world for me because the touch screen technology is the only way I read books, the only way I read anything," she says.

Touch screens and voice controls have allowed her to continue working toward a law degree. Next year, these devices will help make her legal practice possible.

Apple has made a huge effort to make all of its products from the smallest iPod nano to the Mac accessible. And for Blaszczuk, that's made an enormous difference.

When Google started selling to a select few "explorers," Blaszczuk's friends came over and insisted she try to get a pair. And she did.

"Right after I got it, I went to London," Blaszczuk says. "I went for a wedding, and I actually caught the bouquet. I had Google Glass on, and the bouquet landed in my lap." She filmed the entire thing.

The voice activated controls have allowed Blaszczuk to start taking pictures again. She filmed a what she called a "rolling" tour of Brooklyn. Google encouraged her to take Glass on a camping trip.

Blaszczuk uses Google's Internet-connected glasses to talk on the phone with her grandmother and to search the Internet with voice controls.

"Voice activated technology has a long way to go, including Glass," she says, "but if I could talk to an appliance in my house, if I could say 'OK, lamps, turn on,' that would be a huge change."

Today it's possible to wire a house to respond to your voice. But it's expensive. And when Blaszczuk fantasizes about the kinds of technologies she wants, item No. 1 is robotic limbs.

"There is a lot of cool stuff that is already happening in robotics I think that allows people who don't have use of their limbs to use robotic limbs," she said.

While it's possible that an affordable system might soon allow Blaszczuk to talk her lamps or her stove or other appliances in her house, the robotic exoskeleton seems like a distant dream. There are just too few people who both need it and could afford it to make it commercially viable.

"People with disabilities are going to continue to be a very small percentage of the marketplace," says Corbb O'Connor, a consultant who works with companies to improve accessibility for the blind and other users with disabilities.

"Companies don't see people with disabilities as a big piece of their marketshare," O'Connor says.

While that is true, O'Connor says ignoring accessibility issues completely is a multi-billion dollar mistake.

The National Federation of the Blind has been pushing Amazon to make its Kindle e-readers fully accessible to users with visual impairments for years. When school districts and universities have contracted with Amazon to provide Kindles for class, NFB has sued.

These conflicts have given Apple a big advantage in the education market even though Amazon's tablets are much less expensive. Recently, Apple closed a deal with the Los Angles public school system to spend $1 billion buying iPads for its students over the course of several years.

"The National Federation of the Blind and I keep pushing these companies to say, 'Look, Apple is still a profitable company,' " Corbb says. "They are clearly not losing money on all these blind people buying their iPhones. And as they've seen, actually, the accessibility features of an iPhone are not limited to blind people. You have quadriplegics who can use them, you have people who are autistic who are finding ways to use them, you have people how have hearing impartments that are using iPhones, all with just a little bit of extra software that's is already built into every single Apple product."

And Corbb says that's just beginning. Making technology accessible often makes it better. Siri's voice seemed novel to millions us just a few years ago.

"Well, the voice was Karen [Jacobsen]. Blind people have been listening to Karen's voice for at least 25 years as robotic speech," Corbb said.

He says more often than not the technologies that really blow us away – that have the potential to change the way we live — are accessible by design. Think about a self-driving car and what it promises to do for Corrb – who's blind — or Blaszczuk in her chair.

For the disabled, innovations like that could be liberating. But as Corrb points out, it could pretty awesome for the rest of us, too.

Disneyland to change access program for disabled people

From The AP:

ANAHEIM, Calif. -- People with disabilities will no longer go straight to the front of lines at Disneyland and Walt Disney World after growing abuse of the system, park officials said. 

Under the change, visitors will be issued tickets with a return time and a shorter wait similar to the FastPass system that's offered to everyone.

The current way "certainly has been problematic, and we wanted to curb some of the abuse of this system," Disneyland Resort spokeswoman Suzi Brown told the Orange County Register.

The change takes effect Oct. 9 for guests with park-issued disability cards. Disney officials said more details will be released after park employees are briefed on the new rules.

Currently, visitors unable to wait in the regular line can get backdoor access to rides or go through the exit and wait in a shorter line.

Brown compared the change to making a reservation and boarding at the appointed time.

The move was a response to the phenomenon of disabled "tour guides" who charge money, sometimes hundreds of dollars, to accompany able-bodied guests and allow them to avoid long lines. The park said others who don't have a disability have been able to get an assistance card since no proof of disability is required.

Some families of children with epilepsy and autism criticized the change, saying some kids' disabilities just don't allow them to wait in standard lines.

Rebecca Goddard takes her sons, age 4 and 6, to Disneyland once a week. Her sons have autism and can't stand in lines longer than a few minutes before they start pushing other people.

"My boys don't have the cognition to understand why it's going to be a long wait," Goddard told the Register. "There are so few things for my boys that bring them utter joy and happiness - to mess with it just makes me sad."

The advocacy group, Autism Speaks, consulted with Disney officials on the change and urged parents to see how it unfolds.

"Change is difficult," said Matt Asner, executive director of the Southern California chapter. "I didn't want it to change, but I understand there was an issue that needed to be dealt with."

Who Cares about Kelsey? Documentary that aims to educate others about emotional/behavioral disabilities to air on PBS

From TASH:

We want to highlight an important new documentary that relates to our work at TASH. Dan Habib’s Who Cares About Kelsey? documents Kelsey Carroll’s struggles with emotional and behavioral challenges and shows innovative educational approaches that help students like her to succeed – while improving the overall school culture and climate.

When Kelsey Carroll entered high school, she was a more likely candidate for the juvenile justice system than graduation. Diagnosed with ADHD and carrying the emotional scars of homelessness and substance abuse, as well as the actual scars of repeated self-mutilation, Kelsey was volatile, disruptive and, by her own admission, “not a nice person” to be around.

During Kelsey’s sophomore year, a new school leadership team implemented Positive Behavioral Interventions and Supports (PBIS), a youth-directed planning process called RENEW, and other reforms to improve the school’s culture and reduce the dropout rate. Who Cares About Kelsey? follows Kelsey through the ups and downs of her senior year and shows how her school’s new approach towards students like Kelsey gave her the tools and the opportunity to succeed. 

Make sure to catch this important documentary, which will be shown on local public television stations.  Check your local listings or www.whocaresaboutkelsey.com for more broadcast info and to watch the compelling film trailer.

Spain wins Roosevelt prize for disability rights, inclusion

From West:

“If you don’t like something, change it. If something bothers you, confront it.” This is the motto Spain used in recent days when it received the Franklin D Roosevelt International Disability Rights Award from the United Nations headquarters in New York. The award recognizes the efforts made by a country to improve the rights, inclusion and well being of people with disabilities in all areas of society.

The grandson of the famous US president, David B Roosevelt, presented the award to Queen Sofìa of Spain. She emphasized that people with disabilities are “human beings with the same dignity and rights as any other person”. They are not just ‘recipients of subsidies’. She also attributed the success of the Spanish model to collaboration between different levels of government and social organisations.

Indeed, Spain leads by example in this field. It was the first in Europe to ratify the UN Convention on the Rights of Persons with Disabilities and has adapted its laws accordingly. In the coming years it will follow the Plan on Disability 2013-2015. It will also take into account children with disabilities, of which there are 140,000 in Spain, who are at increased risk of exclusion and poverty.

Furthermore, in times of financial constraint, Madrid has not neglected accessible tourism and has in fact invested in it. Not only has it campaigned for better access to public spaces, infrastructure and services but it has also implemented appropriate technologies for people with disabilities. It’s therefore not a coincidence that 20 million Europeans with disabilities recently expressed a desire to visit Spain in the near future – and this represents a significant economic resource for the country.

There are also plenty of personal stories about inclusion that have made history, such as Pablo Pineda who will be presenting Piensa en Positive, the first TV programme to be presented by a person with Down’s syndrome. Or take the case of Angela Bachiller, who last July became Spain’s first town councillor with Down’s syndrome in the town of Valladolid.

All in all, there is no shortage of reasons to award Spain with the bronze bust of the 32nd US president, who contracted polio aged 39. Despite being paraplegic and unable to walk or stand without assistance, he was elected four times by the American people. A cheque for $50,000 was also presented to CERMI, the Spanish Committee of Representatives of Persons with Disabilities.

Disney, ESPN team up to promote inclusion for people with disabilities

From The Examiner:

The Walt Disney Company and ESPN are starting a two year initiative to use sports for the promotion of social inclusion, they announced September 6. The two companies will work with Special Olympics Unified Sports® to join people with and without intellectual disabilities in Special Olympics' activities. The new partnership was announced by Timothy P Shriver, CEO and chairman of the Special Olympics, and John Skipper, ESPN president, in conjunction with a Special Olympics Unified Sports® event at ESPN’s campus in Bristol, Conn.

“Sports have the unique ability to transcend social and cultural barriers. Disney is proud to support Special Olympics Unified Sports®, which is helping to create a better world through compassion and understanding,” said Leslie Goodman, senior vice president, of Disney. The multimillion dollar investment by the companies will be used to “support Special Olympics’ goal of registering one million Unified Sports® participants, including athletes (individuals with intellectual disabilities), teammates (individuals without intellectual disabilities) and coaches, by 2015.”

Special Olympics Unified Sports® “puts people with and without intellectual disabilities on the same team.” The goal of this sports program is “promoting social inclusion through shared sports training and competition experiences,” according to Special Olympics Unified Sports’® website.

Along with financial support, ESPN will provide marketing assistance for Special Olympics Unified Sports®. Additionally, Disney and ESPN will become the “global presenting sponsors and official media sponsors of Special Olympics Unified Sports."

"Having unified track at our school last year was really fun -- it was amazing to see all of the athletes at Lunenburg High School running on the same track. While we may be all of different speeds and skill levels, we were all athletes and we were all looking to compete. There were no labels on anyone except for their lane numbers. This is something anyone would appreciate, runner or not," said David Albertini, a senior at Lunenburg High School, in Massachusetts.

More information about the Unified Sports program is available on the website of the Special Olympics.

Michael J. Fox: Parkinson's made me a better actor

From The Hollywood Reporter:

Michael J. Fox's Parkinson's may have made him a better actor.

The star of NBC's upcoming The Michael J. Fox Show, in which he plays a news anchor struggling with the disease, explains in a cover story for Rolling Stone that after he was diagnosed with Parkinson's, he began to change his physical reactions in scenes, which altered his approach as an actor.

"I had a certain fluidity to my movements and rhythm of speech and a physicality that I had depended on," Fox tells the magazine. "It served me really well, but when that was taken away, I found that there was other stuff that I could use. That hesitation, that Parkinsonian affect, is an opportunity to just pause in a moment and collect as a character and respond to what's happening and just gave me this kind of gravitas. It really gave me a new view of things."

The disease seems to have also taken away some of his acting anxiety.

"I used to be really nervous," Fox tells Rolling Stone, "and sit in my dressing room and fret about a scene that was coming up and sweat it out and say 'What am I going to do? You say action and I have to do something. What am I going to do? And what's that actor going to do? And how do I respond to that?' And now it's just like 'Okay, what's happening?' And something happens, I react to it and if nothing happens, I don't react. I don't worry about that bit I was going to do or the look I was gonna give because when I get there I may not be able to give that look or do that thing or move that glass."

The show, which has already received a 22-episode order, is set to premiere Sept. 26.

Towson University, in partnership with U.S. Department of State, to host professional fellows from Serbia as part of project to bolster disability rights in Serbia

Note: This is an ongoing project in which I am partnering with the disability organization, Centre Living Upright in Serbia and the Novi Sad School of Journalism in Serbia. In the picture, Mima Ruzicic-Novkovic, leader of Centre Living Upright, speaks about better reporting on disability issues in Serbia in August 2013. 

TOWSON, Md. -- Towson University’s Department of Mass Communication & Communication Studies and its Hussman Center for Adults with Autism will host representatives from the Serbian disability organization, Centre Living Upright, and the Novi Sad Journalism School in Serbia, as part of the U.S. Department of State sponsored Professional Fellows EMPOWER Program, administered by Mobility International USA (MIUSA). .

This two-way exchange program aims to expand the capacity of organizations in the U.S. and abroad to promote inclusive communities and advance disability rights around the world. Towson University is working on a long-term project with the Serbian organizations to create and disseminate effective media messages surrounding disability rights. Emphasis will be placed on the use of social media to advocate for the inclusion of individuals with disabilities in all sectors of society

In August 2013, Rhonda Greenhaw, Director of Towson University’s Hussman Center for Adults with Autism, went to Serbia to participate in a preliminary exchange visit to build the foundation for the collaborative media advocacy project.

From October 19-29, 2013,  Milica Mima Ruzicic-Novkovic, director of Centre Living Upright, and Jelena Jovovic from the Novi Sad Journalism School will work alongside counterparts at Towson University to gain first-hand experience on how issues in the disability rights and journalism fields are addressed in the U.S.  

During their time in Maryland, Ruzicic-Novkovic and Jovovic will meet with disability rights advocates and journalists from key organizations, audit journalism training courses, and develop a long-term project that will help illuminate disability rights in Serbia. The Towson University-Serbia project will include training Serbians with disabilities in both media advocacy and self-advocacy; educating Novi Sad journalism students on how to report on disability issues; creating a television show by and for Serbians with disabilities; and developing a media monitoring scheme. 

Towson University is one of 20 U.S.-based organizations and institutions competitively selected to host overseas professionals from 40 organizations in 20 different countries.  Projects range from inclusive education, independent living, healthcare rights, law and policy, recreation and sports, access to public services, and advocacy for all persons with disabilities. . Learn more about and view an interactive map of the 20 selected teams here. 

At the conclusion of the program, all overseas participants and their U.S. hosts will gather in Washington, D.C., for a three day conference facilitated by MIUSA, Oct. 31- Nov.2. Participants will network with other leaders in their field, and share plans for long-term projects that will be implemented upon their return home.  

For press inquiries, please contact:

Beth Haller, Ph.D., Towson University Department of Mass Communication and Communication Studies, (410) 704-2442, bhaller@towson.edu

Anna Griffin, U.S. Department of State, (202) 632-6452, griffinAL@state.gov  

About Towson University’s Department of Mass Communication & Communication Studies and the Hussman Center for Adults with Autism:

The Department of Mass Communication and Communication Studies focuses on the study of the structure, processes, aesthetics, functions, ethics and criticism of mass media and human communication. The department provides students with broad and diverse course work in advertising, journalism and new media, public relations, and communication studies.

The Hussman Center for Adults with Autism brings together Towson students and young adults on the autism spectrum to create a mutually-rewarding learning environment. Social, educational and fitness programs support student learning and adults with autism as they develop the tools needed to lead meaningful lives as engaged members of their communities.

About the Bureau of Educational and Cultural Affairs: The U.S. Department of State’s Bureau of Educational and Cultural Exchange supports exchange programs that increase mutual understanding between the people of the United States and other countries.  Approximately 50,000 individuals take part annually in exchange programs managed by the U.S. Department of State.

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Michael J. Fox and others play TV heroes with disabilities in new fall TV seaspm

From The NY Times:

“How can you hit a man in my condition?” Michael J. Fox complains when his television daughter gives him a playful smack on the arm in the premiere of “The Michael J. Fox Show.” 

He might as well be saying it to the viewing audience, not as banter but as a gentle taunt. 

“My condition,” for Mr. Fox, is Parkinson’s disease, and his new series, which has its premiere on Sept. 26 on NBC, doesn’t just work it into the show. It basically makes a character out of it. Several series in the new season continue the welcome advance of characters with disabilities or severe medical conditions on television, but “The Michael J. Fox Show” takes things to a different level. It’s a fictional series wrapped in Mr. Fox’s personal reality show. 

With our natural tendency to want to feel as if we’re part of something groundbreaking, it’s easy to forget that characters with disabilities have been turning up on television for a long time. That is underscored this season with a new version of “Ironside,” a series about a detective who uses a wheelchair, which arrives on NBC on Oct. 2. The original “Ironside,” starring Raymond Burr, made its debut almost half a century ago, in 1967. 

Since then, television has brought us blind investigators (“Longstreet” in 1971, “Blind Justice,” in 2005) and a so-called defective detective with obsessive-compulsive disorder (“Monk” in 2002), not to mention a paralyzed convict (Augustus Hill on “Oz” in 1997). Mary Ingalls lost her sight in “Little House on the Prairie” back in 1978. Before it was a Broadway hit or an acclaimed film, “The Miracle Worker” was a teleplay, on “Playhouse 90” in 1957. 

And Mr. Fox is far from being the first actor with a disability or serious medical condition to play a character with that challenge on television (though advocates argue that this kind of casting doesn’t happen nearly often enough). Jim Byrnes, a double amputee, was a featured player on “Wiseguy” in the 1980s and “Highlander” in the 1990s, among many other credits. Chris Burke, who has Down syndrome, played a son with that condition on “Life Goes On,” a domestic comedy that ran for four seasons beginning in 1989. When Dana Elcar, an actor on “MacGyver,” developed glaucoma and began to lose his sight in the early 1990s, the series had his character experience the same thing. On AMC’s “Breaking Bad,” R J Mitte, who has cerebral palsy, portrays Walter White Jr., who has that condition. 

Those precedents acknowledged, there are certainly more characters with disabilities and disruptive conditions on television now than in Burr’s day. And they are being given richer, more active lives, aggressively so, as writers emphasize the “abilities” part of “disabilities.” 

When we first meet the new “Ironside,” played by Blair Underwood, he is beating information out of a man detained by the police; later he and his girlfriend steam up the screen with a love scene. In the opening moments of “Growing Up Fisher,” a domestic comedy NBC has slated for midseason, a father (J. K. Simmons), who is blind, cuts down a tree with a chain saw. In “Mind Games,” a new ABC show, Steve Zahn plays a bipolar man who, with his brother, runs an agency that uses human-behavior research to alter clients’ fate, the latest in a glut of shows since “Monk” in which conditions like Asperger’s syndrome and obsessive-compulsive disorder are disruptive but not debilitating. 

The actors in these series do not have the disabilities they’re portraying, something also true of Kevin McHale (Artie on “Glee,” D J Qualls (Billy on “Legit”) and others. Advocacy groups continue to complain that few such roles go to those with the impairment being depicted. They also emphasize that the number of characters with disabilities on television is still far short of reflecting real life. 

Mr. Fox’s new series lives in a different universe from all those debates. He not only has the disease that his alter ego, a television newsman named Mike Henry, has, but he is also surely the most famous Parkinson’s patient in the world. He was one of Hollywood’s more beloved stars long before he announced that he had the disease in 1998. And since then, he has been fearless in talking about Parkinson’s, using his fame to put its symptoms and effects on display and emphasizing what he can still do rather than what he can’t. 

All of that is rolled into his new show. He and the writers know what you know about Mr. Fox and how you are naturally inclined to feel about it — that condescending mix of sympathy and pity and discomfort that any disability brings out in those not directly affected by it. And they take advantage of all of it. 

The pilot is just as aggressive as the other new series in showing what someone with a disability can do. But there is a lot more going on. The episode involves Mike’s decision to return to work at NBC, which he left because of his Parkinson’s. The man trying to coax him back knows what a ratings boost Mike would bring, and Mike knows exactly how NBC would promote his return — that is, with manipulative schmaltz. 

Mr. Fox has used his Parkinson’s to good effect for a couple of guest spots on other shows, most notably a recurring role as a lawyer who plays up his symptoms to win cases on “The Good Wife,” but “The Michael J. Fox Show” pilot goes well beyond that. It’s head spinning in its meta-ness. It’s about Mike Henry and his Parkinson’s; about the fictional world of the show reacting to Mike and his Parkinson’s; about Mr. Fox forcing you to react to his Parkinson’s; and about NBC letting you know that it knows that there is a certain amount of string-pulling in forcing you to react to Mr. Fox’s Parkinson’s. 

And Mr. Fox, a very good comic actor before Parkinson’s and since, is doing it all with a wink. The viewer is brazenly invited to decide whether it’s all admirably courageous or loathsomely exploitive, while Mr. Fox says impishly, “How can you hit a man in my condition?”

An app to nab jerks who illegally use accessible parking

From The Atlantic Cities:

The Austin non-profit Parking Mobility argues that one in four cars parked in a disabled parking spot actually shouldn't be there, an abuse so common that law enforcement could never reasonably keep up with it. But while meter maids don't always spot these scofflaws, plenty of other people do (especially disabled drivers who are legitimately looking for such spots). So how do they get in on the shaming and ticketing?

There's a clever app for that, described this week by the New York Times' Wheels blog. Parking Mobility is trying to partner with cities on an app that would allow trained volunteers to file instant reports to the city from their smart phones of offenders they catch in the act. All they have to do is take three photos:

• the rear of the vehicle (license plate and make/model of vehicle)
• the parking spot showing both the vehicle and the disabled parking signs
• the front windshield of the vehicle showing no disabled placard or ID

The app automatically adds GPS coordinates and a time stamp. "After you take these photos," Parking Mobility's website adds, "leave the violating vehicle and submit the report. That’s it!" They do not, in other words, want you sticking around to give the illegal parker a piece of your mind.

When the city collects the fine for the violation – as high as $500 in Texas, the Times reports – Parking Mobility would receive a portion to support the app and local charities.

This is a cheap way to more efficiently enforce the most egregious parking violations, deputizing citizens in a limited way. The app is not built, however, to catch people who park in disabled parking spots with disabled placards but no actual disability.

Handful of activists in Canada are exploring new ways to look at sex and disability

From Daily Xtra in Toronto, Canada:

In the still we see Loree Erickson in her wheelchair, her dress pulled down to expose hard nipples and her head thrown back as co-star Sam slides a gloved hand between her thighs.

The film, want, was Erickson and Sam’s first time making porn. They were nervous, they fumbled, but what they’ve made is real and sexy, and it’s getting us to rethink who’s desirable.

At the film’s premiere, one director said it was so hot, Erickson’s wheelchair just faded away. But the wheelchair is the point.

“That’s not part of my vision,” Erickson says, “that you have to make any visible marker of my disability disappear so that you can see me as sexy.”

Though she’s happy with the film and the overall response it’s received, Erickson is clear that want was born of frustration. She’s daily made to feel non-sexual. When she goes out, people compliment her outfits, but she says no one picks her up. In queer porn, bodies like hers aren’t shown. “It’s still skinny, white, hipster queers with tattoos.”

Despite some improvement in recent years, with a wider range of bodies represented, Erickson finds casts are still fairly homogeneous.

Andrew Morrison-Gurza, a master’s student researching public perceptions of disability and the law, has felt similarly excluded. “I don’t fit because I’m not walking, I don’t have a six-pack, I’m not six foot two, and I don’t have an eight-inch dick,” he says, “so all of those things together mean that I don’t fit this very structured stereotype of what gay men are apparently looking for.”

Though he’s remarkably free of cynicism, Morrison-Gurza describes the gay men’s community, with its “body beautiful” culture, as especially wary of disability and says his sexuality often makes people uncomfortable or perplexes them. Some assume he’s a virgin or that he has no feeling in his legs. Others are thrown when he cracks dirty jokes — something he particularly delights in.

Homophobia and transphobia can, of course, further suppress sexuality. In the context of healthcare and home care, this is especially disastrous. In Bent, a now-defunct online magazine by and for queer disabled men, Randy Warren describes an unfortunate incident with his caregiver, Todd. He’d been travelling for business, and one night after going to sleep he woke up to a tongue in his ear. He hadn’t told the caregiver he was gay, and Todd, assuming he was lonely, decided to surprise him with a visit from a sex worker. It seriously misfired. Not only had Todd failed to get Warren’s consent, he’d hired a woman.

John Killacky, who had a spinal cord tumour removed 17 years ago, remembers the clumsy handling of his sexuality by hospital staff. Initially paralyzed from the neck down, he’d asked his hospital psychologist about sex. She told him that since she wasn’t gay, she couldn’t advise him. Other staff offered Killacky and his boyfriend a video depicting sex between an able-bodied woman and a man with quadriplegia. Killacky and his partner didn’t mind that there were no gay materials but felt the video was condescending and unrealistic.

“The woman . . . picks the guy up, puts him in the bed like he’s a little baby doll, gingerly gets in bed next to him, and rolls him on top of her. And my heart broke,” Killacky says. He points out that the man would not have been able to feel insertion, much less thrust, and was stunned by the video’s insistence on man-on-top sex.

Like Erickson, writer and performer Leah Lakshmi Piepzna-Samarasinha offers more appealing models of sex and disability. Two years ago, she collaborated with Ellery Russian on Crip Sex Moments, a suite of performances drawing on their own experiences, like the first time Piepzna-Samarasinha had a lover with the same chronic illness as her and the way this lover seduced her with gluten-free brunches and cane foreplay.

Crip Sex Moments is just one of several pieces she’s created for Sins Invalid, a project centring on performances by trans and queer people of colour with disabilities (poster pictured).

“It’s really common for me to get a reaction from people who go, ‘Wow, there’s enough material around that for an entire show?’” But Sins Invalid isn’t an arbitrary alliance of marginalized identities — and Piepzna-Samarasinha explains that for her, the emphasis on race is especially significant.

“It’s impossible for me to talk about chronic illness without talking about environmental racism” — what she says is the disproportionate exposure of people of colour and low-income communities to polluted and otherwise degraded environments. In her first Sins Invalid performance, Piepzna-Samarasinha describes growing up in a rustbelt town in Massachusetts, what it felt like being at school, overpowered by the smell wafting down from the abrasives plant, and how each year another teacher developed alopecia or cancer.

And yet, the mainstream disability rights movement has been predominantly white.

“I came to disability studies with the hope that I was coming home,” says Syrus Marcus Ware, a local artist, researcher and educator. As a queer, black, trans man and identical twin with disabilities, Ware had sought a place that embraced all facets of his identity but found the presumption of whiteness to be pervasive. In other spaces, he often feels he has to check his disabilities at the door.

“When I go to a black queer meeting, I’m only talking about that issue,” he says, noting he feels he can’t question why the meeting’s on the fourth floor and there’s no elevator.

In his art he explores how his full identity comes together, referencing Audre Lorde, who wrote, “My fullest concentration of energy is available to me only when I integrate all the parts of who I am.”

In 2005, Ontario enacted the Accessibility for Ontarians with Disabilities Act (AODA), intended to accomplish what preceding legislation could not: a barrier-free Ontario. New standards are rolling out in stages, with an end date of Jan 1, 2025, and in its annual reports, the province describes progress on customer service, employment and transportation. But it’s unclear when critical AODA components, like accessible building standards, will come into effect, and on-the-ground change is slow.

“If we wait until 2025 to literally get in the door to our doctors or our schools or our apartments, some of us won’t be here,” Ware says.

In his thesis proposal, Morrison-Gurza argues that legislation can bring true accessibility only if we shift cultural attitudes, particularly the idea that disability is a deficiency existing within an individual, something that person must overcome to navigate the world, rather than a social problem.

In fact, disability affects a growing number of us — currently one in seven Canadians — and more as our population ages. Most of us need support of some kind to live and fully participate in society: glasses to see, inhalers to breathe, painkillers for our backs and so on. But we don’t necessarily identify with the term “disability” or anticipate future needs, making it easier to ignore accessibility issues.

Being sexual and desired should never be a prerequisite for access, but it can be. Consider this: if your crush couldn’t get past the stairs to your party, you’d choose an accessible venue. If they got migraines from perfumes, you’d ask invitees not to wear them. Collectively, our crushes could be a powerful force for change.

Conversely, when our bathhouses and parties don’t have ramps or American Sign Language (ASL) interpretation, we’re not just failing to consider access, we’re making implicit statements about who’s sexy, Ware says. “What we’re saying is, we don’t anticipate or imagine anyone from deaf communities and/or people from disability communities . . . to be a desirable person, because if we did we would make sure that they could come to the party.”

Queer feminist circles tend to be ahead of the curve when it comes to these issues, but even within this community, Erickson finds that theory often doesn’t translate into practice. Party organizers will post mission statements outlining inclusive, anti-oppressive values but then pick venues like Club120 because it’s sex-positive, ignoring the fact that some invitees can’t get past the stairs.

And when events promise accessibility, they often neglect critical details. A venue might have a ramp at the entrance, for example, but washrooms located in the basement, or ASL interpretation might be provided but with lighting too dim to properly see.

That’s not to say efforts aren’t being made. In 2011, Luke Anderson and Michael Hopkins started up StopGap, a volunteer-driven project that builds small wooden ramps for businesses. More than 100 businesses across Toronto, and as far as Cranbrook, BC, have participated.

Anderson, who uses a wheelchair, explains that he and Hopkins were inspired by their own workplace, where every day for six years they had to deploy a temporary folder ramp so that Anderson could enter.

He admits that StopGap’s solution is temporary and imperfect, but it spurs conversation, cuts through the municipal red tape required for permanent ramps, and it’s better than waiting for 2025.

And people with disabilities are not the only ones to benefit — some business owners have reported an increase in customers as more people get through their doors, including parents with strollers.

Other affordable solutions exist. “People with disabilities are actually really smart at figuring out how to do access on no money,” says Piepzna-Samarasinha. “Oppressed people know best how to create a space that works for us, so you just need to ask.”

But first, we need to want it — and a little pressure always helps. To that end, Elisha Lim (who prefers the gender-neutral pronoun they) started up a pledge to skip parties that aren’t wheelchair accessible: “Why would I come to a party if my friends are barred?” they ask.

Their Facebook event page includes a list of venue recommendations, including detailed accessibility information. At last count, 281 people had signed up, and though momentum has slowed, more continue to join. With broader participation, initiatives like these could help ensure that more people are able to enter and navigate queer spaces.

Since its premiere in 2006, Erickson’s want has racked up awards and generated tremendous enthusiasm from audiences. Even her mother is now on board.

“It took her a while. She had to get there, but she’s like, ‘So you’re a pornstar. Well, I’m proud of you.”’

And Erickson’s just getting started. She recently wrapped up shoots for some new films, and as part of her PhD dissertation, she’s enabling others with disabilities to make porn, then interviewing participants about how the process transforms their ideas of bodies and “fosters resilience against cultures of undesirability.”

At its core, accessibility ensures everyone can participate in our community. Films like Erickson’s go a step beyond, working to make those with disabilities feel not only welcome, but truly wanted.