Fellowship Alumna Sneha Dave Creates Network for Teens and Young Adults with Chronic Health Conditions

Sneha Dave

Rockville, Maryland, Jan. 15 – Mount Kilimanjaro, the highest mountain in Africa, was just another obstacle in the road for Sneha Dave. But reaching the summit – more than 16,000 feet above the plateau – was all the more challenging for Sneha, who has had a chronic and often debilitating disease since childhood.

When Sneha was six years old, she was diagnosed with ulcerative colitis, a chronic condition that affects the large intestine and often leads to surgery to remove the inflamed organ. The disease caused Sneha (which her mother told her means “someone that you love a lot”) to miss much of middle school and high school as she underwent several surgical procedures.

“I was more of a fulltime patient than I was a fulltime student at that time,” says the now 21-year-old senior at the University of Indiana in the Hutton Honors College. [continue reading…]

James Trout and Eric Ascher inside the spin room at the CNN Democratic Debate

Des Moines, Iowa, Jan. 14 – While many of the presidential candidates are focusing on how to help people with disabilities, several self-advocates currently are in Iowa showing that people with disabilities are capable of doing the work, if only they are given access to do so.

Eric Ascher and James Trout, both on the Autism spectrum, and Ila Eckhoff, who has cerebral palsy, are ensuring that the presidential candidates do not forget the one-in-four adults in America who have a disability by reporting on the campaigns’ efforts for The RespectAbility Report, an online publication at the intersection of U.S. politics and disability.

Eric Ascher and James Trout, who are both on the Autism spectrum, interviewed several candidates while in Iowa, including Sen. Amy Klobuchar (pictured above). This is Trout’s second campaign season doing so.

Ascher is the Communications Associate of RespectAbility, a nonprofit organization that fights stigmas and advances opportunities so people with disabilities can participate fully in all aspects of community. Ascher’s motivation for engaging the candidates is not only professional but also personal:

“I know firsthand how hard it is for qualified people with disabilities to find jobs. I spent two years after college looking for work. I honestly believe that stigma around disability played a major role in that fact. What candidates say can make a huge difference in the stigma people with disabilities face, and I am thrilled to be in Iowa so I can help them know how they can be good allies to the disability community.” [continue reading…]

The Healing Powers of Dude Premieres on Netflix, Jan. 13, 2020

Amara (Sophie Kim), Noah (Jace Chapman) and Simon (Mauricio Lara)

Los Angeles, Jan. 13 – With one-in-five people having a disability in the U.S. today, the lack of representation – just 3.1 percent on screen and even less in children’s television (less than one percent) – means that millions of people are unable to see themselves in media today. A new show premiering today is bucking that trend. The Healing Powers of Dude, a family comedy about Noah (Jace Chapman), a middle schooler with social anxiety disorder, premieres on Netflix.

Its creators have lofty but achievable goals – to give kids who have anxiety a vehicle to tell their parents how they feel and to “overcome the stigma of talking about mental illness.”

“The more families and friends can talk about this issue, the better the chance people can get the help they need,” creators Erica Spates and Sam Littenberg-Weisberg told RespectAbility.

Spates and Littenberg-Weisberg created  The Healing Powers of Dude based off of true events in Sam’s family, allowing viewers to have the unique opportunity to experience what life is like for Noah as he goes through his daily activities. According to the National Alliance on Mental Illness (NAMI), anxiety is classified as the most common health disorder in the U.S. Although general anxiety is classified as normal, anxiety disorders are more difficult to cope with. Eighteen percent of adults and eight percent of children in the U.S. have an anxiety disorder.

In addition to the character of Noah, his best friend Amara uses a wheelchair. The character of Amara is “fearless to help push Noah outside his comfort zone,” said Spates and Littenberg-Weisberg. “There are disabilities you can see, like someone in a wheelchair, and those you might never know about, like anxiety. We decided this could be a great opportunity to show kids and families the struggles people face on both sides, as well as challenge some of the prejudices and misconceptions people have.”

Ninety-five percent of characters with disabilities are played by actors without those disabilities. Amara, however, is played by Sophie Kim, an eleven-year-old with muscular dystrophy who has used a wheelchair since she was four years old. The production team committed early on to finding a young actress who uses a wheelchair, holding a nationwide search to find Sophie, and then adapting the role to her real-life experiences. “Representation is very important to us, as well as to Netflix,” said Spates and Littenberg-Weisberg. “We understand the power of seeing yourself represented in media and that the more you see it, the more it can become commonplace… [Casting Sophie] was one of the best decisions we made making this show. There was never a moment where Sophie didn’t show up to set ready to slay her scene. Nothing about her disability ever hindered production in any way.”

RespectAbility worked closely with team on the character of Amara. “Working with RespectAbility has been an incredibly eye-opening experience,” said Spates and Littenberg-Weisberg. “Not only did they give us helpful notes on scripts to make sure we were representing Amara accurately, the people at RespectAbility were kind enough to share their own experiences and anecdotes to include in our scripts.” [continue reading…]

Los Angeles, Jan. 9 – During Sunday’s Golden Globes awards show, both host Ricky Gervais as well as various award winners pointed out the lack of racial and gender diversity among the nominees. While these are very important conversations, no major outlet has examined disability representation on screen – or behind the camera – of the Golden Globes winners. With one-in-four adults having a disability in the U.S. today, the lack of representation – just 3 percent on screen – means that millions of people are unable to see themselves in media today.

Ramy Youssef, winner of Best Performance by an Actor in a Television Series, Musical or Comedy, is important. His show, Hulu’s Ramy, breaks many diversity barriers – featuring both an Arab Muslim family as well as Steve Way, his real-life best friend who has muscular dystrophy.

“It’s very, very hard for people like me to be on TV,” Way said in an interview with Vulture. I mean, when was the last time you saw someone who looked like me on TV or in a movie? I can’t tell you how many times I’ve gotten in front of a casting director and they just cut me off before I even do my lines. I can’t tell you how many times I’ve auditioned for a disabled person’s role and I was the only disabled actor, and I still didn’t get it.”

In addition, two winners of Best Motion Picture, Once Upon a Time … in Hollywood and Missing Link, both include people with disabilities – as writers and voice actors. [continue reading…]

“It is an honor and privilege serving on the Executive Committee of RespectAbility and in a wide myriad of roles. I enjoy interacting with the extraordinary staff, Fellows, our board colleagues and others in the greater community of people with disabilities. It is truly beyond remarkable the extraordinary strides that we’ve made in six short years in such a wide arena—from empowerment of women with disabilities in NYC to fighting stigmas in Hollywood to training the next generation of disability community leaders through our National Leadership Program to promoting employment opportunities for all.”

– Vivian Bass

Vivian Bass has volunteered with RespectAbility in a multitude of capacities since its founding in 2013. She became a resource as work was being done to launch the organization, as she knew RespectAbility’s Co-Founder/President, Jennifer Laszlo Mizrahi, from various leadership and national organizations. [continue reading…]

Washington, D.C., January 4 – Recently there have been a horrific number of attacks on Jews and Jewish institutions. This anti-semitism comes as there are also attacks against people who are immigrants, people of color, members of the LGBTQ+ community and other marginalized groups.

RespectAbility’s position: hate has no place in our society.

We also recognize that some of the attacks have come from people with significant mental health issues, and that it is vital for mental health services to be provided where and when it is needed. Such services are a safety measure for all.

Nonetheless, there is never a reason for hate crimes. They must stop now. [continue reading…]

Credit: Apple

Los Angeles, Dec. 19 – As 2019 comes to an end, every major entertainment and tech company is launching a streaming service. Not to be left out, Apple recently launched its new original content service, Apple TV+. The service is notable from a disability perspective for both the content and the full user experience.

All content is subtitled and dubbed in nearly 40 languages, “including subtitles for Deaf and Hard of Hearing, or closed captions.” The real game-changer for Apple TV+ is that all series, movies and trailers are available with audio descriptions in eight languages, ensuring accessibility for blind viewers.

“We build accessibility into everything at Apple, and Apple TV+ is no different,” said Sara Herrlinger, Director, Global Accessibility Policy & Initiatives at Apple Inc, in an exclusive interview with RespectAbility. “Whether it’s extensive audio descriptions and captioning, or providing accessibility features for exploring our service in different ways, we want to connect with every user and enable them to experience these incredible stories.” [continue reading…]

Los Angeles, Dec. 19 – In the newly released The Parts You Lose, a young deaf boy named Wesley faces bullying at school and a father who cannot accept that his son cannot hear. He finds a father-figure in an injured fugitive (Aaron Paul) that he rescues, helping him recover in an abandoned barn. A heartfelt film with great acting and memorable scenes, The Parts You Lose’s central theme of a young boy looking for a positive male role model is relatable to all audiences.

“To me this story is universal,” Christopher Cantwell, director of the film, said. “Aside from Wesley’s deafness, he’s feeling emotionally isolated. He’s struggling to make friends. His family is under a lot of stress, which only amplifies and worsens his disconnection from a disappointed father. I think that story is something probably everyone can relate to… feeling cut off and in need of connection to others. We can empathize with the fear of growing up, and the hardening that often comes on the other side of that. The story isn’t about Wesley’s deafness, that’s merely a part of the aperture through which he sees the world.” [continue reading…]

With the holiday season upon us, it is easy to hold a gathering where all guests — with and without disabilities — feel welcomed, respected and have fun. All it takes is some planning. With some help from Alie Kriofske Mainella, an expert on working for inclusion of people with disabilities, here are some tips to ensure your gatherings are inclusive, thoughtful and welcoming to all.

1. Don’t be afraid to include guests with disabilities.

People with disabilities have their disabilities 24/7, so they know how to create work-arounds so that they feel comfortable. If you know someone has a disability, use a simple strategy — ask the person what they need to be fully included. All too often people with disabilities are not invited to events, or don’t go because they feel embarrassed to “put someone out” by asking for a simple thing that will help them attend. By telling them that their presence is valued, and asking what they need, you will build a new level of trust and affection. For example, one of the biggest things that aging loved ones need is a ride. So help them find a carpool or send an accessible taxi or Uber to pick them up and return them home. [continue reading…]