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Creatives With Disabilities Act to Promote Representation

Nov. 9, 2021 – In July, nearly ten artists and creators of the spinal muscular atrophy (SMA) came together virtually 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 and educate the SMA community.

SMA is a rare genetic disorder that causes muscle weakness and can make it difficult to breathe, walk, or sit upright without help. It affects more than 25,000 Americans and is the leading cause of genetic death in infants.

The group collaborated to create the new single “Spaces”, written and sung by James Ian, musician and actor of SMA, and a music video, sponsored by Genentech.

“Genentech has listened intently to members of the SMA community and heard recurring themes, namely that people with disabilities are under-represented or poorly represented in media and social networks,” said Michael Dunn, senior director of marketing at Genentech .

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

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

Evans, who suffers from SMA, made the entire video from his bed due to mobility restrictions.

“How many people with disabilities are we holding back by not giving them access to funding or other things that they need to do these kinds of media projects? Evans said.

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

Disability on screen

About 61 million American adults live with a disability, according to the CDC. That’s about 1 in 4.

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

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

“Given the prevalence of disability in the American population and therefore among the Netflix audience,

this is an area where this entertainment company can seek to increase authentic portrayal – and can lead its industry peers towards greater inclusion of this community, ”the report says.

In response to the study, Netflix pledged to invest $ 100 million in efforts to help attract under-represented groups to the film and television industries.

But even increasing representation, it’s critical that people with disabilities are involved in projects, according to Evans, who runs FilmDis, an organization that monitors the presence of talent with disabilities in the media. He also works as a disability consultant with the creators of Netflix and Lionsgate.

“I don’t feel like people without disabilities understand our stories well enough to understand them very often,” says Evans. “Personally, I have a hard time finding examples where this is done correctly. “

“So, from the start of a project, people with disabilities must be present. They must play roles with disabilities, and people with disabilities must be present at all aspects of the production. “

Create opportunities

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

“When you have an actor with a disability auditioning every 6 months, while non-disabled actors audition six times a day, that’s a huge disparity,” says Evans. “That’s what’s happening right now, because they’re relegated to roles that are considered ‘disabled roles’ and nothing else.”

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

All content on the platform (documentaries, cooking shows, movies, etc.) is presented or produced by people with disabilities.

The latest DiMe project to be released on November 15th is the movie The anguish of laughing, written by and starring actor Andrew Justvig, a recent graduate of the University of California at Riverside, who suffers from cerebral palsy.

Cerebral palsy is a disease that makes up several disorders. “Cerebral” refers to the brain and “paralysis” refers to muscle problems. The disease can affect your ability to move and maintain your balance.

The film explores the relationship dynamic between a stand-up comedian with cerebral palsy (Justvig), his wife, who is not disabled, and his mother who does not support him.

Disability lawyer and founder of DiMe, Jennifer Price, told Fox News that authentic portrayals of people with disabilities are a major focus for the network.

This includes exploring topics surrounding disability that are often overlooked.

“I want to bring up the subject of the intersection of sex and disability because this subject, I think, is not discussed, or if it is discussed, it is in a humiliating way,” Price said in an interview. with Your first podcast.

Price said she hopes storytellers “will continue to have people with disabilities playing speaking roles, but disability is not part of the story.”

Redefining “inspiration”

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

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

Carozzo, 26, had complications from tonsillitis surgery at the age of 5, which caused brain damage, ultimately leading to cerebral palsy.

She partners with various brands on social media including Tommy Hilfiger and CeraVe, many of which seek to reach out to the disability community in their products and marketing.

In a recent post, Carozzo challenged her over 17,500 followers who call her an “inspiration” to really dig deep and ask why they are feeling this.

“People have been brainwashed to see the struggle, to see the defeat, to see all of these things as an inspiration, that’s good, but maybe it’s time to redefine it,” Carozzo says.

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

Carozzo says she feels more rewarded when its content inspires people to stand up for the disability community in their own way.

“I get DM [direct messages] all the time, like, ‘I saw someone park in a disabled area. They didn’t have the sign, so I went to ask them if they should be parked here, ”Carozzo says.

“To me, this is much more important than a brand deal and a paycheck.”

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

“Spaces” is a prime example.

“That single line – ‘If there is one thing you will see, it is my humanity ‘- I think that’s the one thing we all wanted to be the first thing people would notice about us, ”said James Ian, singer of“ Spaces ”.

“People with disabilities have a place in all the spaces that non-disabled people also occupy, whether it’s the lead role in a big movie or the lead singer in a huge, hit song. “

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