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Creativity with Disabilities Act to promote representation

9 Nov. 2021 – In July, nearly a dozen artists and creatives in the spinal muscle atrophy (senior high school) community virtually came together for a brainstorming session hosted by Genentech, a San Francisco-based biotechnology company.

Genentech runs a program called SMA My Way, which aims to support the SMA community and raise awareness.

SMA is a rare genetic disease which causes weak muscles and can make it difficult to breathe, walk or sit up straight without assistance. It affects more than 25,000 Americans and is the number one cause of genetic death in infants.

The group worked together to create the newly released single, “Spaces, ”Written and sung by James Ian, a musician and actor with SMA, and a music video sponsored by Genentech.

“Genentech has listened closely to members of the SMA community and heard recurring themes – that people with disabilities are underrepresented or misrepresented in media and social media,” says Michael Dunn, senior director of marketing at Genentech.

“They wanted to be known for their talents, not defined by their disabilities.”

Dominick Evans, who directed the “Spaces” music video, says the big-budget project proves that people with disabilities can be competitive in the media industry.

Evans, who has SMA, directed the entire video from his bed due to mobility restrictions.

“How much disabled people hold us back by not giving them access to funding or other things they need to make these kinds of media projects? ” says Evans.

“I made this amazing music video, and the support of Genentech, the SMA community and the studio we worked with in Hollywood gave me the freedom to show what I’m capable of.”

On-screen disability

About 61 million American adults live with a disability, according to to the CDC. This is about 1 in 4.

But a recent USC Annenberg Inclusion Initiative study shows that this population is still not widely reflected on the screen, despite Hollywood’s diverse diversity initiatives over the past few years.

The study found that out of 126 movies and 180 series produced by Netflix in 2018 and 2019, 5.3% of the lead or co-leaders were characters with disabilities, and only 2.1% of all speaking characters had disabilities. .

“Given the look of disability in the American population and thus among the Netflix audience,

it is an area where this entertainment company can strive to increase authentic representation – and can lead its peers in the industry to greater inclusion of this community, ”the report reads.

In response to the study, Netflix promise To invest $ 100 million in efforts to help bring under-represented groups into the film and television industry.

But even when increasing representation, it is critical that people with disabilities be involved in the projects, according to Evans, who manages FilmDis, an organization that monitors the presence of disabled talent in the media. He also works as a Disability Consultant for Netflix and Lionsgate program creators.

“I do not feel that non-disabled people do not understand our stories enough to get it right very often,” says Evans. “I personally struggle to find examples where this is done right.”

“So, from the beginning of a project, disabled people must be there. They have to play disabled roles, and disabled people have to be involved in all aspects of production. ”

Creating opportunities

The already highly competitive media industry can be even more challenging for actors, musicians and other creative people with disabilities, according to Evans.

“When a disabled actor gets one audition every 6 months, where non-disabled actors get six auditions a day, it’s a very big difference,” Evans says. “This is what is happening right now, because they are being relegated to roles that are seen as ‘disabled roles’ and nothing else.”

Disability Media Network (DiMe) is a new TV streaming service that seeks to shift this inequality.

All content on the platform – documentaries, cooking shows, movies and more – has either been shown or produced by people with disabilities.

The latest DiMe project will be exempt November 15 is the movie The anxiety of laughter, written by and starring actor Andrew Justvig, a recent graduate of the University of California at Riverside, who cerebral palsy.

Cerebral palsy is a disease that has several disorders. “Cerebral” refers to the brain, and “paralysis” refers to problems with your muscles. The disease can affect your ability to move and maintain your balance.

The film explores the relationship dynamics between a stand-up comedian with cerebral palsy (Justvig), his wife, who is non-disabled, and her non-supportive mother.

Disability Attorney and DiMe Founder Jennifer Price tell Fox News that authentic depictions of people with disabilities are a major focus for the network.

This includes researching topics around disability that are often not mentioned.

“I want to address the issue of the intersection of sex and disability, because I feel that topic is not being discussed, or if it is being discussed, it is in a derogatory way,” Price said in an interview with Your first podcast.

Price said she hopes storytellers “keep people with disabilities playing in speaking roles, but the disability is not part of the storyline.”

Redefine “Inspiration”

These days, social media can be just as influential as TV and film, giving people with disabilities the opportunity to share accurate, first-hand information about their everyday life experiences.

Paula Carozzo, a Miami-based disabled content creator and inclusive activist, uses her platform to educate people on topics around cerebral palsy and disability in general.

Carozzo (26) had complications from tonsillitis surgery at the age of 5, which caused brain damage, which eventually leads to cerebral palsy.

She works with several brands on social media, including Tommy Hilfiger and CeraVe, many of whom want to reach the disability community in their products and marketing.

In a recent post, Carozzo challenged her more than 17,500 followers who call her an “inspiration” to dig really deep and ask themselves why they feel that way.

“People are brainwashed to see struggle, to see defeat, to see all this stuff as inspiration, that’s fine, but maybe it’s time to redefine it,” Carozzo said.

“For me, it’s not inspiring that I do not have an elevator to get somewhere and I have to struggle 30 floors up to get where I need to be.”

Carozzo says she feels most rewarded when her content inspires people to stand up for the disabled community in their own unique way.

“I receive DMs [direct messages] all the time, like ‘I saw someone parked in a disabled place. “They did not have the poster, so I went to ask them if they should be parked here,” said Carozzo.

“To me, it’s a lot bigger than a brand transaction and a paycheck.”

The combination of personal gifts and talents with advocacy seems to be what many creative people with disabilities have in common.

“Spaces” are a good example.

“That one rule – ‘If there’s one thing you’ll see, it’s my humanity ‘- I think it’s the one thing we all wanted to be to be the first thing people would notice about us, ”says” Spaces “singer James Ian.

“People with disabilities belong in all the spaces that non-disabled people also occupy, whether it’s the lead role in a big movie, or the lead singer of a big, successful song.”

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