Kansas father creates graphic novel for son with Down syndrome

From Comicosity:

Chip Reece crowdfunded the extremely personal and inspirational tale of Metaphase. Teaming with Kelly Williams, Reece is building a world featuring a superhero with Down’s Syndrome in an original graphic novel unlike any other. Reece was kind enough to give us the scoop on the story, the campaign, and more below. (The graphic novel is out fall of 2014.)

Aaron Long: Let’s start at the beginning. How did Metaphase come to be?
Chip Reece: Basically, I was inspired by my son Ollie, who has Down’s Syndrome, and his superhero-like strength through several major medical ordeals, including three open heart surgeries. When I started to dig for comic book characters he could relate to as a person with Down’s Syndrome, there wasn’t much out there, and absolutely no superheroes. I found this odd, given how much my son and other kids with Down’s Syndrome go through. 50% of all kids born w/ DS have congenital heart defects (Ollie had two), one scary health fact out of many. I wanted my son to have a comic book character that was like him, heroic, inspirational and full of endless potential. That’s when I started to pursue the idea.

Getting to where we are now is part luck and part working with really great people. Initially the idea was to make it for my son, and share it with the people that I know. I showed the script to the artist, Kelly Williams, and we began to make plans to create a 10 page comic. A chance conversation with Peter Simeti, Alterna Comics publisher, turned into him offering to take the book on and encouraging us to put what we had together for ComiXology’s 2013 Free Comic Book Day event. The exposure there has been a big help leading up to this Kickstarter launch.

AL: Can you describe the world of Metaphase?
CR: The world’s seemingly all-powerful superhero has a son who is his physical opposite. Ollie is born with heart defects and Down’s Syndrome and so his dad becomes overly protective, holding his son back from pursuing his dream of being a hero just like his dad. This frustration will lead Ollie to pursue the hero business on his own, with the help of a company that claims it can give anyone superpowers through chromosome tampering. His dad’s reluctance to let him pursue his dream ends up creating a situation that his super-dad can’t handle, leaving his fate in the hands of Ollie.

AL: What will Super Ollie be up against in Metaphase? Can you discuss what he will be facing in this 70+ page adventure?
CR: Really, the biggest thing Ollie faces are the limits that are assumed of him. The person Ollie looks up to most, his dad, doesn’t fully believe in his potential because he’s scared he’ll get hurt. There’s a nasty villain in the mix of it (because what kind of superhero book would this be without it?) but at the heart of things, it’s really about showing the world that individual’s with Down syndrome aren’t defined by limits.

AL: Are there plans to produce more Metaphase issues in the future? Or is this a completely self contained story?
CR: I’d love to, but I don’t want to get too far ahead of myself. The story works as a stand alone, but is definitely open for creating more. I’ve thought that it would be awesome to get Ollie involved somehow as he gets older. Give him some input into future stories. We’ll see!

AL: Your Kickstarter campaign is online right now. Can you discuss what rewards are available for backers?
CR: There’s a great range of prices for the tiers we have available. For those looking for the cheapest way to read the book, they can pledge $10 for digital only or $15 for a print version with Kelly William’s wraparound cover. Higher incentives include a variant cover by legendary TMNT artist/writer Jim Lawson, “High Five” editions where my son puts his hand print in the book, some original artwork, and even as high as an Alterna Comics bundle that includes 27 graphic novels from their library!

AL: Any final words for Comicosity’s readers regarding Metaphase?
CR: I appreciate Aaron and Comicosity giving Metaphase the time of day. I believe diversity in comic books is important and this is an area that’s seriously lacking. Most of all, coverage like this goes a long way for raising awareness about individuals with Down’s Syndrome and the things they can do. This includes things like running restaurants, climbing Mt. Everest, and giving inspirational speeches. They can even be our heroes. Thank you!

Actor Chris Burke reflects on Corky character, Life Goes On, Down syndrome

From US magazine. Video of Chris Burke discussing his acting work.

Chris Burke is thankful for his TV past — and especially the message it gave to the world. The actor, who has Down syndrome, opened up about playing the groundbreaking character Charles "Corky" Thacher in Life Goes On during an upcoming episode of Oprah: Where Are They Now? on OWN.

"It's real great to be known on TV. I had the opportunity to do something that I always wanted to do, and now I have done it," Burke, nearly 49, explained.

"It really shows we all have different talents, and stick at what you're good at," he continued. "It's not about performing disabilities. It's about performing abilities. That's the message."

Life Goes On aired for four seasons from 1989 to 1993 and was the first primetime television show to feature a main character (Burke) with a genetic disorder. The series also starred Bill Smitrovich, Patti LuPone and Kellie Martin.

Burke continued to work in TV with appearances in Promised Land, Touched by an Angel, The Division and ER. His most recent work was playing a custodian in the film Mona Lisa Smile in 2003. He's currently the Goodwill Ambassador for the National Down Syndrome Society.

Burke's Oprah: Where Are They Now? episode airs this Sunday, Aug. 24 at 9 p.m. EST on OWN.

Deaf-blind lawyer sues Scribd for alleged discrimination

From Business Insider:

A deaf-blind attorney who made Business Insider's 2013 list of the 20 most impressive Harvard Law students is now fighting for the rights of blind readers in a lawsuit against digital subscription reading service Scribd, seeking equal access for the blind.

Haben Girma (pictured) made Business Insider's 2013 list for her work advocating on behalf of people with disabilities. Now, at 26, she is continuing her efforts as a Skadden Fellowship Attorney with the nonprofit law firm Disability Rights Advocates. There, Girma is representing the National Federation of the Blind (NFB) and blind Vermont mother Heidi Viens in a lawsuit against Scribd for allegedly depriving blind readers access to its online services in violation of the Americans with Disabilities Act.

Girma, deaf-blind since birth, fought on her own behalf for equal access as an undergraduate at Lewis and Clark College, where she clashed with dining hall staff who regularly failed to email her dining hall menus in advance so she could read them on her computer using special screen reading technology. “I told the manager that if he would not send emails consistently, I would sue. To tell you the truth, I had no idea how I would do that,” Girma said at a 2014 TEDxBaltimore event. 

Business Insider followed up with Girma recently about the case against Scribd, which she considers her favorite since graduating from Harvard Law.

Scribd charges subscribers a monthly fee of $8.99 for unlimited access to its collection of more than 40 million titles through its website and apps, as well as the opportunity to publish their own works through Scribd. But Scribd is not programmed to give access to blind readers, according to the plaintiffs' July 29 complaint. That's because it's allegedly not designed for use with screen access software, which vocalizes visual information or displays it in braille for blind people to read.

The complaint alleges that Scribd discriminates against blind people by denying them full and equal access to its services in violation of the Americans with Disabilities Act.

This case is one everyone who reads can relate to, Girma said. "I think it sounds like a great service, and I think just like everyone else in the world, when you hear about a great service and then you realize you can't use it you're disappointed and frustrated. And it's not fair," Girma told Business Insider in a phone interview this week with the help of an interpreter. "Everyone wants to read, which is one of the reasons I really like this case — everyone can relate to the need to read for fun, for work, for school."

Her expertise in the case extends beyond her knowledge as an attorney to her personal experiences with her disability.

"I found that as someone who is blind and deaf I have specialized knowledge about the tools and services and needs of this community and I bring that knowledge to my work," Girma said. "So that is an advantage I have over other lawyers and that is one thing that helps me in representing the National Federation of the Blind, that I have this knowledge about technology and techniques and the needs of the blind community."

Girma attributes her success at Harvard and as a professional to the right attitude, training, and tools, which can allow all people with disabilities to compete equally with their nondisabled peers, if given equal access to informational and educational services like Scribd. "There have definitely been times in my life where I encountered something and I'm not sure exactly how I'm going to do it, but I adopt the attitude that I'm going to try to find a way to make this work," she said. "And I think about tools, whether it's braille or screen readers or a guide dog or a cane, to accomplish what I need to do."

But Scribd's inaccessibility to blind readers deprives them of the ability to compete equally with their nondisabled peers, the lawsuit alleges. "Scribd's inaccessible reading services gratuitously exclude the blind from having access to information that is critical to education, employment, and community integration," the complaint said.

Prior to the lawsuit, the NFB reached out to Scribd about its alleged inaccessibility but Scribd made no commitment to resolve the issue, according to the complaint, which cites iBooks as one example of a digital reading service that has been programmed with screen access technology allowing blind readers to independently access and choose titles.

"Scribd could potentially win thousands and thousands of new subscribers if they took the time to make their service accessible, and it could be very easy," Girma said.

Business Insider reached out to Scribd for a comment on the lawsuit in its early stages. "We're currently reviewing the allegations with our legal counsel in order to determine the appropriate next steps," said Scribd CEO Trip Adler in his statement emailed to Business Insider.

Blind journalist, Robert Kingett, takes on Netflix to get it to provide descriptive audio

From SF Weekly:

For Robert Kingett (pictured), a young blind man based in Chicago, fun includes playing video games and watching movies.

Luckily, in this day and age, adaptive technology allows blind people the opportunity to enjoy many pastimes the rest of us take for granted.

Descriptive audio is a feature available in some theaters and on select DVDs which can allow the blind to follow the storyline of a film along with sighted film buffs. Descriptive audio is exactly what it sounds like: if a film's leading lady slaps her cad of a boyfriend (or girlfriend) in the face, a narrator will quickly, in between dialogue, say "she slaps his/her face."

With Netflix poised to become one of the largest home video providers through online subscriptions, Kingett is publicly challenging the Bay Area-based video streaming company to make its content accessible to the blind and visually impaired through what he calls the Netflix Accessible Project.

Kingett spoke to SF Weekly about this daunting task, and about his life as a gay, blind, and physically disabled man who is nonetheless making his mark on the world.

SF Weekly: Describe your campaign in your own words.

Kingett: The Accessible Netflix Project is a campaign to make Netflix more accessible to blind people and to people using adaptive physical devices as well. A lot of people believe we are all about audio description and nothing else but that's far from the truth. We are a group that demands that Netflix do what should have been done a long time ago and make the screen player fully available to screen readers. Make the iPhone application accessible. Add audio description to their streamed shows and movies when its already on DVDs and TV shows. We are a team who says this should happen because there's no excuse anymore and it's long overdue. We are also reaching out to others like Hulu, Blockbuster Instant, Amazon Instant and even services in the UK.

People are using the internet more and more to watch movies and TV shows. If audio description is already available on DVDs and TV shows than just put it on the server. It's not hard to do and it's a shame it isn't happening. We're here to make sure it happens even if it takes us years.

SF Weekly: Have you heard from Netflix?

Kingett: We have heard from Netflix and they have told us that it's not their responsibility. Another time they told us "don't expect this anytime soon". In PR speak that basically means "we won't do it, so shut up and go away."

SF Weekly: Can you tell us more about who you are?

Kingett: I attended the Florida School For the Deaf and Blind. I was a premature baby, only six ounces, so I guess you could say that I brushed against death and turned around and kicked it square in the jaw. My lungs weren't developing, so the doctors had to place me in an incubator. They didn't monitor the oxygen very well, so as a result I'm legally blind. I'm guessing the cerebral palsy developed from me being born way earlier than I should have been. I guess my birth was epic foreshadowing, because it certainly gave clues as to what kind of fighter I was.

I wrote all the time, and not just in one style either. I wrote all kinds of things from book reviews to  essays to letters to persuasive arguments, even at a younger age. I read books like people eat food. That was my outlet: reading, writing and video games.
I created a paper at the blind high school that is continued to this day.

SF Weekly: Your Facebook page makes us think you're also a comic book and sci-fi fan.

Kingett: I was, and am, your typical white and nerdy guy. I was, and am, very much into books and video games. I'm skinny, and I still watch Pokemon and Yu Gi Oh as an adult. I'm proudly a nerdy gay guy and my husband will just have to deal with that and bake me cookies now and then, and read me books, too. Man, is he going to have a rough life!

SF Weekly: Do you think people have become more sensitive to the needs of the blind and disabled? Where might there be room for improvement and what can be done to make things better?

Kingett: People are more sensitive to the blind and disabled but there's still this huge lack of awareness and I don't know where this ignorance comes from. There have been countless examples of disabled people doing things that people say we can't do, such as writer, journalist, doctor, social worker, IT Tech Personnel, but there's still this huge ignorance everywhere you look.

The biggest improvements need to come in the form of employment and media. I don't see disabled people in ads, or disabled actors and actresses starring on TV, in movies or in commercials. If there is a disabled character in a movie, it's usually played by a person who just looked up disabled on Pediatric.

SF Weekly: The 25th Anniversary of the Americans With Disabilities Act passed a few weeks ago. What does the ADA mean to you?

Kingett: The ADA has given the disabled the power to tell people what is what and I believe that kind of motivation is huge. It's letting others know who disabled people are. Let's them continue to promote the ADA and display what the ADA stands for. I've had employers not hire me because I'm disabled. We've all had that in the disabled community, so the ADA means a lot to me now and in the future because soon that will no longer be an issue.

SF Weekly: You will be continuing with the Netflix campaign?

Kingett: We have tried several times to contact the studios of movies and TV shows. It's hard to get names and email addresses of the people we need to talk to. That requires a lot of digging on LinkedIn. Voicemails are never returned. Also, when you have a stutter, people are not very patient. So when I try to make a call, I'm told they don't have time to talk to you and I'm hung up on A LOT.

We did break through one time, though. Fox, the network which does Family Guy, had an assistant producer talk with her team about sharing the audio description files with Netflix. Netflix could have the files if they just asked for it. Netflix never did ask for it and have ignored our emails ever since.

In Australia, disability activists join forces to replace ABC-axed Ramp Up

From New Matilda:

Australians with disabilities have launched a crowdfunding campaign to fill the void created by the closure of ABC’s Ramp Up news site.

Disgruntled members of Australia’s disability community are channelling their outrage at the closure of ABC’s Ramp Up website in July into a crowdfunding campaign to create a new and independent media outlet aimed at providing news and views about and by Australians with disabilities.

Dr George Taleporos, co-producer of the crowdfunding campaign wanted to bring attention to the silencing of the disability community that had resulted from the axing of ABC Ramp Up, after the Commonwealth ended special funding to the site, and the ABC decided to axe the site.

The former contributor to ABC Ramp Up, recently led a protest at the ABC studios that ended with protesters being escorted off the premises by police.

“Commentators such as Crikey writer Shakira Hussein have said that the of scrapping of Ramp Up looks like an attempt to suppress disability dissent at a crucial moment for the sector, as the nation embarks on the building of a National Disability Insurance Scheme, and following the abolition of the position of Disability Discrimination Commissioner,” Dr Taleporos wrote.

“The former commissioner, Graeme Innes has publicly lent his support to the campaign.”

Banking on a successful crowdfunding campaign, the new site will provide paid employment opportunities for people with disabilities by commissioning content and engaging members of the disability community as expert commentators on issues that matter most to them.

“We are determined to bring back to life this crucial advocacy tool for the disability community and for the wider community to hear our voices and our perspectives," said Rachel Croucher, co-producer of the crowdfunding campaign.

“The 1000+ strong ‘Save ABC Ramp Up’ Facebook group shows our community's commitment to fill the void left behind by the failure to renew funding to Ramp Up and its subsequent axing, and our team wants to harness that commitment and enthusiasm to build a new and independent media outlet for people with disabilities to provide commentary on issues that affect us.”

Croucher is hopeful the initiative will bring the voices of Australians with disabilities back from the wilderness by enabling them “to make our voices heard at a time when our voice needs to be as strong as ever.”

Crowdfunding allows many small donations to be collected towards a funding goal. You can contribute by visiting the site here.

NY City's Theater Breaking Through Barriers receives 2014 ADA Sapolin Award

From the NYC Mayor's Office. Pictured are Shannon DeVido (Melanie) and David Marcus (Ben) in Samuel D. Hunter's "Geese," part of TBTB's MORE OF OUR PARTS.

Theater Breaking Through Barriers (TBTB) received the 2014 ADA Sapolin Award in recognition of its artistic excellence and commitment to advancing people with disabilities.

The award was presented by Mayor Bill de Blasio and the NYC Mayor's Office for People with Disabilities (MOPD), at a reception in honor of the 24th Anniversary of the Americans with Disabilities Act, on Tuesday, August 19, at the New York Public Library in Manhattan.

The Title II ADA Sapolin Public Service Award will be awarded to Theater Breaking Through Barriers in recognition of its outstanding contributions to the community.

"Theatre Breaking Through Barriers merits this honor for its commitment to advancing actors and writers with disabilities and for helping to change and enhance the perception of people with disabilities from dependence to independence," says Victor Calise, Commissioner of the NYC Mayor's Office for People with Disabilities. "[The company] is successfully developing role models for people with disabilities through artistic excellence," adds Mr. Calise.

Signed in 1990, the Americans with Disabilities Act has fostered independence, empowerment and inclusion for millions of Americans. Each year, the Mayor and MOPD present four ADA Sapolin Awards recognizing individuals and organizations that have made significant contributions to increasing accessibility for people with disabilities under the titles of the Americans with Disabilities Act. The ADA Sapolin Awards are named after late MOPD Commissioner Matthew Sapolin, who passed away on November 29, 2011.

Denver's renovated Union Station violates Americans with Disabilities Act

From 7 News Denver:

DENVER - Less than one month after opening, the renovated Union Station is at the center of a lawsuit.

The Colorado Cross-Disability Coalition says the new design violated the Americans with Disabilities Act (ADA).

"Denver and RTD constructed a raised area that is open to the public inside the renovated Union Station that is completely inaccessible to patrons who use wheelchairs," the lawsuit claims.

“We do not understand why RTD or Denver would make such a mistake and intentionally exclude individuals who use wheelchairs from a large portion of the new Union Station project,” said Julie Reiskin, a named plaintiff in the lawsuit.

The half-a-billion-dollar transit center opened July 26 and was four years in the making. It is expected to serve 15,000 passengers every day, increasing up to 200,000 passengers per day by 2030.

The new transportation hub is located just west of the old Union Station, which was built in the late 1800s.

The station is planning to connect downtown with the Denver International Airport by 2016, when the new East Rail Line is expected to be complete.

The Colorado Cross-Disability Coalition is suing RTD, the Denver metro-area transit authority, over what the group says is inaccessibility at the newly renovated Union Station.   - See more at: http://www.cpr.org/news/story/denver-sued-over-union-station-access-disabled#sthash.iP2LAJG3.dpuf

The Colorado Cross-Disability Coalition is suing RTD, the Denver metro-area transit authority, over what the group says is inaccessibility at the newly renovated Union Station.   The building re-opened to much fanfare last month, with a new hotel and restaurants. 
The station’s Great Hall features a public area with seating and shuffleboard tables, but the area is elevated and unreachable by people who can't climb stairs, according to the Colorado Cross-Disability Coalition.
The Coalition says RTD has offered to set up a temporary ramp when someone needs it. The group’s attorney, Andrew Montoya, says that’s not enough.
"That’s absolutely not the same experience, basically to have to go around, see that there is no ramp, and then make your way around, trying to find someone who maybe can get a ramp out for you," Montoya said.
Montoya says his organization brought up the issue with the Regional Transportation District while the remodel was still in the planning stages.
"We’ve been round and round with both RTD and the city of Denver kind of tackling this problem," Montoya said. "And the fact that it still went up and still was installed, we think that shows at least a reckless disregard for folks’ civil rights."
The suit says Union Station is in violation of the Americans with Disabilities Act., and it is asking a court to require RTD to install permanent wheelchair access.  
RTD denied to comment on the matter.
- See more at: http://www.cpr.org/news/story/denver-sued-over-union-station-access-disabled#sthash.iP2LAJG3.dpuf

The Colorado Cross-Disability Coalition is suing RTD, the Denver metro-area transit authority, over what the group says is inaccessibility at the newly renovated Union Station.   The building re-opened to much fanfare last month, with a new hotel and restaurants. 
The station’s Great Hall features a public area with seating and shuffleboard tables, but the area is elevated and unreachable by people who can't climb stairs, according to the Colorado Cross-Disability Coalition.
The Coalition says RTD has offered to set up a temporary ramp when someone needs it. The group’s attorney, Andrew Montoya, says that’s not enough.
"That’s absolutely not the same experience, basically to have to go around, see that there is no ramp, and then make your way around, trying to find someone who maybe can get a ramp out for you," Montoya said.
Montoya says his organization brought up the issue with the Regional Transportation District while the remodel was still in the planning stages.
"We’ve been round and round with both RTD and the city of Denver kind of tackling this problem," Montoya said. "And the fact that it still went up and still was installed, we think that shows at least a reckless disregard for folks’ civil rights."
The suit says Union Station is in violation of the Americans with Disabilities Act., and it is asking a court to require RTD to install permanent wheelchair access.  
RTD denied to comment on the matter.
- See more at: http://www.cpr.org/news/story/denver-sued-over-union-station-access-disabled#sthash.iP2LAJG3.dpuf

The Colorado Cross-Disability Coalition is suing RTD, the Denver metro-area transit authority, over what the group says is inaccessibility at the newly renovated Union Station.   The building re-opened to much fanfare last month, with a new hotel and restaurants. 
The station’s Great Hall features a public area with seating and shuffleboard tables, but the area is elevated and unreachable by people who can't climb stairs, according to the Colorado Cross-Disability Coalition.
The Coalition says RTD has offered to set up a temporary ramp when someone needs it. The group’s attorney, Andrew Montoya, says that’s not enough.
"That’s absolutely not the same experience, basically to have to go around, see that there is no ramp, and then make your way around, trying to find someone who maybe can get a ramp out for you," Montoya said.
Montoya says his organization brought up the issue with the Regional Transportation District while the remodel was still in the planning stages.
"We’ve been round and round with both RTD and the city of Denver kind of tackling this problem," Montoya said. "And the fact that it still went up and still was installed, we think that shows at least a reckless disregard for folks’ civil rights."
The suit says Union Station is in violation of the Americans with Disabilities Act., and it is asking a court to require RTD to install permanent wheelchair access.  
RTD denied to comment on the matter.
- See more at: http://www.cpr.org/news/story/denver-sued-over-union-station-access-disabled#sthash.iP2LAJG3.dpuf

The Colorado Cross-Disability Coalition is suing RTD, the Denver metro-area transit authority, over what the group says is inaccessibility at the newly renovated Union Station.   The building re-opened to much fanfare last month, with a new hotel and restaurants. 
The station’s Great Hall features a public area with seating and shuffleboard tables, but the area is elevated and unreachable by people who can't climb stairs, according to the Colorado Cross-Disability Coalition.
The Coalition says RTD has offered to set up a temporary ramp when someone needs it. The group’s attorney, Andrew Montoya, says that’s not enough.
"That’s absolutely not the same experience, basically to have to go around, see that there is no ramp, and then make your way around, trying to find someone who maybe can get a ramp out for you," Montoya said.
Montoya says his organization brought up the issue with the Regional Transportation District while the remodel was still in the planning stages.
"We’ve been round and round with both RTD and the city of Denver kind of tackling this problem," Montoya said. "And the fact that it still went up and still was installed, we think that shows at least a reckless disregard for folks’ civil rights."
The suit says Union Station is in violation of the Americans with Disabilities Act., and it is asking a court to require RTD to install permanent wheelchair access.  
RTD denied to comment on the matter.
- See more at: http://www.cpr.org/news/story/denver-sued-over-union-station-access-disabled#sthash.iP2LAJG3.dpuf

Speech apps to smart pens: Tech aids students with learning disabilities

From NBC News:

New gadgets and mobile apps introduced in the past few years are making reading, writing and math more accessible to students with learning disabilities.

Text-to-speech apps like Voice Dream Reader and Notability have changed the way students comprehend lessons in areas they normally struggle, said Karen Janowski, an assistive technology consultant in Boston. The apps magnify and “create more white space” around text or recite text to readers. 

 

Smart pens like Echo transcribe written word in specialized notebooks or the corresponding tablet app into digital documents and record voice notes the writer may leave. 

“These gadgets are essential,” said Janowski. She believes moving away from paper and into digital formats, where text can be manipulated, is vital for students with learning difficulties. 

Five percent of students in America have been formally identified as having learning disabilities, according to the National Center for Learning Disabilities (NCLD).The most prevalent of these is dyslexia, diagnosed in up to three quarters of students with learning disabilities. 

The NCLD estimates another 15 percent of school-aged children struggle with learning disabilities, but have not been formally identified. 

 

“These gadgets can give students a sense of self-efficacy, being in charge of their own learning,” said James H. Wendorf, executive director of NCLD. “For students who have learning issues, the learning field is tilted against them, so they’re going uphill.” 

Giving an assist

The last five years have seen several advances in assistive technology innovations in all areas of disability. That's due in art to the “explosion” of mobile apps for iOS and Android smart phones, said David Dikter, chief executive officer of the Assistive Technology Industry Association. 

“When I would use my iPad in class I felt a little awkward, but I think I’ll feel less awkward in college because everyone brings their technology.”

Students with learning disabilities often feel afraid of appearing different from their classmates. Ellie Quinn-Alger, an incoming 19-year-old freshman at Curry College in Milton, Mass., was diagnosed with dyslexia and began using assistive technology in eighth grade. Throughout high school in Burlington, Conn., she used text-to-speech iPad apps like Voice Dream Reader and Read2Go, and speech-to-text computer programs like Dragon Naturally Speaking. 

“When I would use my iPad in class I felt a little awkward,” said Quinn-Alger, “but I think I’ll feel less awkward in college because everyone brings their technology.” She said using programs like Voice Dream Reader on her iPad help write her own essays and feel independent without an instructor sitting next to her. Ellie likes using the LiveScribe smart pen, which is less obvious than an iPad. 

“The pen is small, and I don’t think people will notice,” she said. 

Ellie’s reading teacher and assistive technology instructor, Shelley Lacey-Castelot, believes that apps for tablets and mobile phones vastly reduce the stress of word decoding; the process of translating a printed word into sound that many students with dyslexia struggle with. 

“Text-to-speech apps carve out sentences, make them better able to comprehend what they’re reading,” Lacey-Castelot said. When she speaks to parents and students about technology recommendations, she makes one thing clear:“Technology works best when it’s intertwined with skillfully-provided instruction. That’s when it’s going to be successful. If it’s not intertwined with that methodology, it won’t be enough.” 

Is technology a crutch?

The Family Center on Technology and Disability in Washington focuses on creating programs promoting learning disability awareness. Director Jaqueline Hess said there is no single “best” product for students with learning disabilities because the range is so broad. 

“We have low-incidence and high-incidence disorders, and autism is a spectrum disorder,” said Hess, with the Center since 2001. “If there is technology that has made perhaps the greatest impact recently, it’s tablets, mobile and smart phone apps.” 

Devices with assistive technology capability like tablets and smart phones cost much less than they do now. There wasn’t as large a market years ago, said Hess, and text-to-speech or speech-to-text apps are interactive. 

Learning disabilities, said Wendorf of the NCLD, “cut through anger, frustration, and anxiety when kids are struggling so hard to de-code information or comprehend, to process or retrieve, lots of other things happen than academic and social. 

“One of the oppositions to assistive technology is that it’s a crutch. To that, I would say, can you pass me your glasses? Can you read this? Your glasses are not a crutch,” said assistive technology consultant Karen Janowski. “It’s not a crutch if it promotes success, confidence, and mastery, but mostly independence.”

Writer, editor Doug Lathrop, who wrote about disability topics since the early 1990s, dies

From New Mobility magazine:

New Mobility contributor and former senior editor Douglas P. Lathrop passed away on August 15 as a result of what, for most, would be a minor injury.

He had been celebrating his 50^th birthday with a few dozen of his friends when he sustained fractures in his legs — he had osteogenesis imperfecta and fractured very easily. Lathrop went to the hospital to have casts put on, but died five days later from complications.

Known for his wit, Lathrop had summed up his birthday weekend to a friend like this: “So it was an, ‘Other than that, how was the play, Mrs. Lincoln?’ kind of birthday.”

Lathrop, who lived in San Diego, joined New Mobility’s editorial team in 1998, and previously was on staff at Mainstream Magazine. He took a hiatus from New Mobility to edit our sister publication, Kids On Wheels, from 2005 to 2009. His vision for KOW was to make it like Ranger Rick, only for pre-teens who use wheelchairs.

“Doug was perfect for Kids on Wheels because he could relate to what young wheelchair users were going through — but from the perspective of a successful professional with a strong sense of disability pride. Those young readers — and their parents — were lucky to see his example of accomplishment and self-respect in every issue,” says Jean Dobbs, vice president of publications for United Spinal and editorial director of New Mobility.

“Doug Lathrop was a significant voice of the disability community through his writing and editing for both disability and mainstream publications,” adds Beth Haller, graduate director of the communication management master’s program at Towson University and also adjunct faculty at York University’s critical disability studies graduate program. “I still quote an article he did for the Society of Professional Journalists’ publication, Quill, called ‘Challenging Perceptions.’” That article appeared in the July/August 1995 issue.

Lathrop also wrote a novel, Reconquista, which won Best Unpublished Fiction in the 2011 San Diego Book Awards. In Lathrop’s words, the book, “a dystopian thriller, takes a terrifying look at an alternate America, where history took what seemed like a turn for the better … and then drove straight into a nightmare.” His short fiction has appeared in The Belletrist Review, Kaleidoscope, Mindscapes Literary Magazine, and Palace Corbie.

A celebration of life for Lathrop will be held on August 23 at 4 p.m. in the Meeting House on the Hillcrest Campus of First Unitarian Universalist Church of San Diego, where Lathrop served on the board of trustees. Lathrop is survived by his parents, Raymond and Patricia, and his siblings, David and Debbie.
Here are links to staff favorites of Lathrop’s New Mobility articles:

A Tale of Two Closets, a ground-breaking article chronicling Lathrop’s journey to accepting himself as both a disabled and a gay man. This is Lathrop’s most vulnerable article, where he plumbed his heart and shared it with our readers.

The Education of Professir X, an excellent profile of Richard Gaskins, with special attention given to sexuality.

The Politics of Dancing, which explores punk rock, slam dancing, and reluctance of some wheelchair users to get out on the floor.

Tending Emotions: Cultivating Humor, Owning Grief and Anger Scroll down to read Lathrop’s section, “The Secret Life of Tiny Tim.”

Ice Cream —Yes, Polyester — No This “ode to being single” showcases Lathrop’s humor.

Who Lost the ADA? In 2003, Lathrop took a good hard look at sluggish ADA enforcement and wrote about it. Some of his findings are still relevant today and it may be interesting to compare this with his later article, “The ADA Turns 20: Half-Empty, Half-Full or Both,” in New Mobility’s July 2010 issue.

The article “Disaster!,” about emergency preparedness, appeared in Mainstream Magazine’s November 1994 issue.

'American Horror Story' new season focused on freak show to feature world's smallest living woman

From The Hollywood Reporter:

FX's American Horror Story has admitted the world's smallest woman to its Freak Show.

Showrunner Ryan Murphy announced Wednesday via Twitter that Jyoti Amge (pictured) has joined the cast of the fourth season of the FX anthology series.

Season four of the series, subtitled Freak Show, is set in Jupiter, Fla., in the 1950s, with Jessica Lange (pictured) in the lead role. The Emmy winner will portray a German expat managing one of the last remaining freak shows in the country.

Returning stars set for Freak Show include Lange, Kathy Bates, Angela Bassett, Frances Conroy, Sarah Paulson, Emma Roberts, Gabourey Sidibe and Evan Peters, among others, as well as AHS newcomers Michael Chiklis, The Hunger Games' Wes Bentley, Fargo's John Carroll Lynch and The Normal Heart's Finn Wittrock. Chiklis is playing Bassett's husband and Bates' ex-husband.

Amge, 20, is the world's smallest living woman, according to the Guinness Book of World Records. She earned the title on her 18th birthday with a height of 2 feet, 0.6 inches. According to Wikipedia, her limited height is because of a growth anomaly called achondroplasia.

The AHS role marks Amge's latest tour in Hollywood. She was featured in a 2009 documentary, Body Shock: Two Foot High Teen, and was a guest on Bigg Boss 6, an Indian Big Brother-like TV competition show.

Amge joins recent addition Patti LaBelle on AHS: Freak Show. The former will have a four-episode arc, playing the mother to Sidibe's character. AHS: Freak Show debuts in October; a specific date has not yet been announced.

British web series about group of adults with intellectual disabilities to air as TV series on Oprah Winfrey's OWN Network

From the OWN Network:

Los Angeles - OWN: Oprah Winfrey Network announced today the television debut of "The Specials."  The groundbreaking docu-series shares the funny, honest story of five housemates with intellectual disabilities living the classic student lifestyle in England.  All 13 episodes will air back-to-back on Sunday, September 7 from 2:30 - 9 p.m.

For a sneak peek, please visit: www.oprah.com/thespecials

Filmed over four years and narrated by housemates Sam, Hilly, Lucy, Lewis and Megan, all between the ages of 19-23 and close friends since childhood, "The Specials" shares the ups and downs of their daily lives from first love to heartbreak, from leaving college to finding a job, as well as the day-to-day interactions and complications of sharing a house together. The housemates live life to the max - they enjoy everything from surfing and karaoke to even competing in the Special Olympics.

"We were extremely thrilled to bring this series to OWN. We fell in love with the fun, adventurous energy and bond the housemates share," said producer Carolyn Strauss. "It is our hope that viewers are not only entertained by their experiences, but inspired by their excitement for life and encouraged to accept and celebrate all people no matter their walk in life."

The Webby Award-winning series was originally produced as short form,10-minute webisodes in England. OWN will televise fresh, newly adapted episodes following housemates as they continue to support each other through major changes in their lives -- everything from breakups, to a parents' divorce and finally an engagement.  The series truly highlights that we are all more alike than different.

"The Specials" is produced by Katy Lock and Daniel May for KADA Media and executive produced by Carolyn Strauss and D.B. Weiss ("Game of Thrones"), Rosie O'Donnell in association with KidRo Productions and OWN: Oprah Winfrey Network.


About OWN: Oprah Winfrey Network
OWN: Oprah Winfrey Network is the first and only network named for, and inspired by, a single iconic leader. Oprah Winfrey's heart and creative instincts inform the brand - and the magnetism of the channel.  Winfrey provides leadership in programming and attracts superstar talent to join her in primetime, building a global community of like-minded viewers and leading that community to connect on social media and beyond. OWN is a singular destination on cable.  Depth with edge.  Heart. Star power. Connection.  And endless possibilities.  OWN is a joint venture between Harpo, Inc. and Discovery Communications.  The network debuted on January 1, 2011 and is available in 85 million homes.  The venture also includes the award-winning digital platform Oprah.com.  For more information, please visit www.oprah.com/own and www.press.discovery.com/us/own.

Parent questions whether Down syndrome should be comedy fodder

From CNN:

Editor's note: David M. Perry is an associate professor of history at Dominican University in Illinois. He writes regularly at his blog: How Did We Get Into This Mess? Follow him on Twitter. The opinions expressed in this commentary are solely those of the author.

(CNN) -- "I am like, I am so (BLEEP) high. This is terrible. And I did it in that voice. And I have never done that voice before in my life. I don't know where that voice came from. But I heard myself use that voice. And in my mind, I went, oh (BLEEP). I just gave myself Down syndrome." --Wyatt Cenac, This American Life, 5/4/2014

It's hard to build a more inclusive society when people keep making fun of you. Even as people with disabilities and their allies make progress in so many ways, disability remains a target for mockery.

Over the last few days, a baby boy with Down syndrome named Gammy has been all over the news (pictured). He and his twin sister were born to a surrogate mother in Thailand, but allegedly when their Australian parents discovered the boy's genetic condition, they left him behind.

To the biological parents, it seems, the words "Down syndrome" meant that he was not worth being their son.

These are the stakes involved in how we talk and think about disability, how we portray disability in the media, not to mention in our schools and homes.

I'm the father of a boy with Down syndrome. I remember weeping when I heard the diagnosis. My mother said she couldn't stop thinking about how he'd be taunted and bullied as he got older. Her experience of people with intellectual disabilities was that they were targets for cruel humor.

The good news is that in recent years, sustained awareness campaigns against dehumanizing speech, coupled with some 20 years of inclusive education since the passage of the Americans With Disabilities Act in 1990, have made things a lot better in America. No one is likely to call my son the r-word to his face.

The bad news is that perhaps we have focused too much on explicit language without addressing the deeper questions of portrayal and representation. Too often, people with disabilities are marginalized and excluded. Instead of focusing on a single word, we've got to work to unravel the prejudices beneath the surface.

Last May, Wyatt Cenac, former "Daily Show" correspondent and comedian, appeared on "This American Life," a popular show on National Public Radio. He told a story about a bad experience eating a pot brownie. The joke was that it made him talk, uncontrollably, in a funny voice, as if he had Down syndrome.

Next, Cenac, broke the flow of the piece in order to issue a kind of disclaimer. He said:

"Now let me just say, I know what Down syndrome is. I know that Down syndrome is something that you're born with when you are born with an extra chromosome. I know all that information. I knew that information then. But something about eating this brownie made me think that somehow I had grown an extra chromosome and I now had adult-onset Down syndrome. And for people who have Down syndrome, it's something they grow up with. And they grow up and they have healthy and happy lives. I just got it."

Then he went right back to his fake voice, slurring words, and sounding confused.

Cenac did not respond to emails asking for a comment. And the host of the show, Ira Glass, declined to comment for this piece. Glass did write, however, to Julie Ross, the mother of a child with Down syndrome. She shared that e-mail with me. Glass wrote: "I agree with you completely that nobody should have to listen to stories that mock and denigrate (people with Down syndrome) This was a concern for me and my producers when we were working with Wyatt Cenac. We talked about it as we shaped the story."

He then notes that Cenac went out of his way to make the disclaimer, claims that Cenac is making himself the butt of the joke, and that, "The only thing that possibly could be offensive is his imitation of what a person with Down syndrome sounds like, and again -- we may disagree about that -- I think that's fair game for a comedian."

Glass and Cenac used the disclaimer, used the statement that they know what Down syndrome is, medically, as a way to protect themselves from criticism. However, as Glass admits, the humor of this piece depends on making fun of the way that some people with Down syndrome speak.

Since my son was very young, we've worked for so many hours on his speech. Together, we've worked with many therapists to carve out individual phonemes, tones, sounds and finally words. Each tiny advance takes months. I wept when I heard him say, "I love you" for the first time, even though it was in a slurred, indistinct voice of the exact type that Cenac was mocking. Moreover, speech is so fraught, because intelligibility -- how clearly my son can communicate with strangers -- determines what kind of independence will be possible for him as an adult.

There is no disclaimer that can take the sting out of Cenac's joke. He and Glass can decide that the humor of the piece is worth being offensive, but they don't get to determine whether the hurt is real or just. Neither do the many comics that rely on punching down, using mockery of people marginalized by ability, race, religion, gender or sexuality to get a laugh.

Cenac isn't alone. Ricky Gervais, in the British TV show "Derek," plays a man who appears to be disabled. Derek is supposed to be a positive example, but much of the comedy extends from his disabled physicality -- a hunched back, a slacked toothsome mouth, and a shuffling walk. Other laughs come from his cluelessness as he cheerily staggers through uncomfortable scenes.

Gervais has said he doesn't mean to make fun of people with intellectual disabilities, saying in an interview, "I've never considered him disabled; he is a 'out of the mouth of babies' innocent person who always says the right thing that you didn't see coming. And if I say he's not disabled, that's the end of it."

That's not the end of it. Not for Gervais. Not for Cenac.

In the end, it doesn't matter whether a comedian uses a diagnostic term, issues a disclaimer, or claims to be the butt of the joke. Humor can reinforce stereotypes or destroy them. When you make fun of attributes associated with disability, you might as well just be standing on stage, shouting the r-word.