Wednesday, September 25, 2013

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.

Tuesday, September 24, 2013

Disneyland to change access program for disabled people

From The AP:

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 Sof├Ča 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.

Wednesday, September 18, 2013

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.

Tuesday, September 17, 2013

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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Saturday, September 7, 2013

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.

Friday, September 6, 2013

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.

Foldable wheelchair wheels give mobility new spin

From USA Today:

The wheelchair is rolling into the 21st century with a twist bound to elicit plenty of double takes: foldable wheels.

Morph Wheels, designed by the same guy who created foldable wheels for bikes, have the potential to make travel of all sorts less cumbersome for a chunk of the nation's estimated 2 million-plus wheelchair users.

"This is the first foldable wheelchair wheel," says Kathleen Hanek, director of product management at Maddak-owned Morph Wheels. "It's all about making things easier and increasing accessibility for wheelchair users."

It's also about making money. Morph Wheels ranks near the priciest end of wheelchair wheels: $950 for a set of two — nearly double what some wheels cost. And, at about 7.5 pounds each, they weigh considerably more than more conventional 4.5-pound wheels. The extra weight is because the tires are solid rubber — no air — and because the wheels are made from glass-filled nylon, not metal.

But, in exchange for the extra weight — and upper-end price — consumers get the convenience of foldable wheels. Also, unlike most wheelchair wheels, these generally fit into overhead bins on flights. And into tight rental car spaces — a boon for some business travelers.

"I've never seen anything like them," says Bob Vogel, a paraplegic and wheelchair user who is senior correspondent for New Mobility, the magazine owned by the United Spinal Association. "I love the innovation."

But, Vogel adds, foldable wheels may only appeal to a niche market. "I don't see your average user taking the time to fold a wheel to get it into a car," he says. "If it takes an extra 20 seconds per wheel, that's a lot of time."
 
To fold the wheels, they must be detached from the chair. They are folded by first removing the axle that holds the wheel in place. The wheel, essentially, squishes in half when you press on both sides.

Foldable wheels where first conceptualized in 2007 for bicycles by British designer Duncan Fitzsimmons. After receiving inquiries from the wheelchair community, he eventually teamed up with Maddak and redesigned the wheels for use on wheelchairs.

The company relied on a focus group of wheelchair users to help it perfect the design. The focus group kept prodding for improvements. "It looks simple, but it was an engineering feat to come up with what we have," says Hanek.

The design was named the top design in the transportation industry in 2013 by the London Museum of Design. The wheels comes with a three-year warranty.

"The trick was to create a wheel that wasn't just a folding wheel," Hanek says. "It needs to act and feel just like a normal wheel when it's unfolded."

Thursday, September 5, 2013

Family of Ethan Saylor, young man with Down syndrome who died in sheriff's custody in Frederick, Md., delivers petition with more than 300,000 signatures to Maryland Governor, asking for independent investigation, more training for law enforcement

From WUSA9:

WASHINGTON (WUSA9) -- The family of Ethan Saylor may be just a couple of hours away from a huge step towards justice in the death of the 26-year-old Frederick man with Down's Syndrome.

Thursday, they will hand deliver a third of a million signatures on a petition to Governor Martin O'Malley, formally asking for an independent investigation into Ethan's death, plus training for law enforcement.

It has been 8 months since Ethan died in the custody of three Frederick County Sheriff's deputies who escorted him out of a movie theater in handcuffs for not having a $12 movie ticket. And for 8 months, Emma Saylor and her family have been fighting for justice.

Emma never thought her change.org petition asking the Governor to intervene would grow worldwide, "Never... I thought maybe the max would be 2,000 and now I look at it, and I'm ....speechless."

Since then, the petition has grown to 340,000 signatures. Emma says, "It's overwhelming, it makes us feel great as a family, it's like we're not alone."

The family admits they've felt forgotten, cast aside, as if Ethan's death didn't matter, ever since the Frederick's County Sheriff's department investigated themselves and found the deputies clear of wrongdoing, even though the medical examiner ruled Ethan's death homicide by asphyxia. They have had support from Down Syndrome organizations, and some lawmakers, including Democratic Delegate Heather Mizeur, but to date, there's been no word from the Governor.

Emma says she hopes the Governor hears all 340,000 voices, and grants an independent investigation, "It's so much bigger than Ethan, it affects everyone."

WUSA9 has pressed for answers too.

Despite several requests, we have not heard back from Frederick County Sherriff Chuck Jenkins, nor anyone from Governor O'Malley's office.

There's another new development tonight, Ethan's mom Patti Saylor will be joining with the National Down Syndrome Society to hold a training webinar later this month for law enforcement and first responders on how to work with people with intellectual disabilities. It's free and anyone can join in.

Sunday, September 1, 2013

Children’s attitudes toward disabled people improve with contact; can be direct interaction or observed, British study finds

From Medical Daily:

Children who interact with disabled children, or even watch them interact with other nondisabled children, develop healthier attitudes toward those with disabilities than kids who internalize their preconceptions, a new study found.

As rates of mental disabilities continue to climb — autism spectrum disorder (ASD) now affects one in 88 children under eight years old, dropping to one in 54 for boys — the familiarity with which children learn to grow up beside the disabled becomes increasingly vital. According to a study conducted by University of Exeter Medical School, increased exposure to people whose range of abilities is more limited than others’ builds prolonged comfort, not only with the specific disability, but also with encountering diversity more broadly later in life.

“We have known for some time that integrating children with disabilities into the regular classroom can improve attitudes,” study author Megan MacMillan said in a statement. “What we have established here is just how much of a difference a greater presence in day-to-day life makes.”

Disabilities can range in nature and severity across all senses in a person’s body. Simple physical deficits in hearing or vision fall on one end of the spectrum, while debilitating mental impairments such as ASD, schizophrenia, bipolar disorder, and Tourette syndrome fall on the other — requiring significantly more medical attention and possibly producing a raft of negative attitudes in unaware, unfamiliar observers.

Hoping to overcome this discomfort, MacMillan’s study consisted of 1,520 children aged seven to 16 who completed a survey designed to assess their attitudes, contact, empathy, and anxiety toward disabled people. The doctoral candidate found that increased exposure reduced feelings of anxiety, thus improving their overall attitudes toward the disabled. Interestingly, her study showed the same results across direct and indirect interaction exposure, “indirect” referring to the observation of other nondisabled children playing with the disabled.

“Simply observing others interacting with disabled children or being aware that others are friends with them can improve attitudes. This ‘indirect contact’ reduces anxiety and increases empathy towards disabled people,” reads the statement released by the British Psychological Society.

Discrimination stands as the greatest wall between nondisabled children and those with mental or physical impairments. Often, negative attitudes and unkind gestures come from a lack of understanding, which produces unempathetic and anxious responses. Macmillan notes that these attitudes typically stem from a place of fear, or discomfort, rather than sheer malice.

Schools vary in the number of students with special educational needs and disability,” she said. “We predicted that if children manage to make more contact with disabled people, better relationships are built.”
Currently, an estimated 37 million to 56 million people live with a disability, according to the Centers for Disease Control and Prevention.