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Golden Globe-nominated ‘Music’ has drawn fierce criticism for its portrayal of autism, while advocates cite Pixar’s ‘loop’ as an example of authentic storytelling about a community that has long been distorted .
Sia’s once obscure directorial debut, Music, drew initial reaction from disability advocates after the film’s teaser debuted in November, but the film’s two Golden Globe nominations, announced in early February, sparked a broader and sustained conversation about how the entertainment industry portrays it. autism.
Music focuses on a free spirit (Kate Hudson) returning home to care for her nonverbal autistic teenage sister Music, performed by Maddie Ziegler. Initially, people turned to social media, overwhelmed by the casting of Ziegler, who has long starred in Sia music videos, instead of an autistic performer. But with the Globe nominations and the release of the film (the film received a US one-night only release on February 10 in select Imax theaters), Music faces further criticism, especially for a scene that shows Ziegler’s character forcibly restrained while lying on the floor.
Activists and advocates noted on social media that the practice was known to cause serious injury and, in some cases, death, with the National Autism Association calling the method “abusive.” In Twitter posts since deleted, Sia has reportedly apologized and announced that the film will have a warning label placed at the start of the film due to the detention scenes. (The singer-songwriter has since deleted her Twitter account entirely.)
“Hollywood tends to be wrong most of the time because of the reasons you would expect – people with autism tend to be left out of most of the process,” says Noor Pervez, community engagement coordinator at Autistic Self Advocacy Network. The industry’s long history of issues related to diversity and inclusion encompasses an appalling record when it comes to the portrayal of disability, including autism. The vast majority of film and television characters who are portrayed as belonging to the autism spectrum are played by neurotypical actors, including Ben Affleck and Dustin Hoffman, the latter winning an Oscar for his portrayal of an autistic scholar in 1988. Rain man.
Pervez note that stories like Music that include nonverbal autistic characters “are pretty universal stories about the people around us rather than ourselves.” He adds: “It’s done in a way that infantilizes AAC. [augmentative and alternative communication] users and talk about us as if we are a burden rather than a part of everyday life. “
Resources are available for those in the industry who wish to represent disability in an authentic and ethical manner. “Because there is such a limited portrayal of autism on screen right now, every time there is a portrayal it will be reviewed, so do yourself a favor and make sure you do your best. research from several sources ”, suggests Lauren Appelbaum, vp communications for RespectAbility, which aims to combat the stigma of people with disabilities. The organization works with companies like Netflix and Disney and individual filmmakers to provide resources and consultation – from script development and casting to site visits – that would better serve to present authentic stories that include disability. He is currently consulting on five projects featuring characters or actors on the autism spectrum.
RespectAbility Consultant Ava Rigelhaupt, a writer-performer who is on the autism spectrum, spoke to writers and producers who develop shows featuring characters with autism. She shares her own experiences and offers notes on dialogue and insight into a character’s physicality, bBut she also emphasizes that she alone cannot speak for the whole community: “There is a saying: When you meet someone with autism, you have met someone with autism.”
Several advocacy groups reported on the Pixar-produced short Loop as an authentic representation of autism. Loop follows a nonverbal autistic girl and a talkative boy, as they join in on a canoe trip and learn to communicate. He was produced as part of Pixar’s SparksShorts, a short film program for new storytellers in the studio ranks. (The program also spawned the debut of the studio’s first gay lead character in short Outside.)
Writer-director Erica Milsom’s idea for Loop came after taking a sabbatical from her work as Pixar’s in-house documentary maker and began volunteering at NYAD, a Bay Area art center for adults with disabilities, where she was placed in a group which included several non-speaking people. Prior to production, the filmmaker created a PowerPoint presentation that was presented to everyone working on Loop, from producers to animators, this detailed research as well as the first-person experiences of individuals across the spectrum, hoping to help creatives convey the story visually and authentically.
“When you’re leading someone into a space they don’t know, the best thing to do is help them understand as much as possible,” says the director, who also brought in an advisor from the Autistic self-advocacy network. The advisor, who was previously non-speaking, shared his lived experiences and offered notes throughout the production, inspiring changes big and small. Initially, Renee was imagined as white, but was reimagined as biracial after the advisor told filmmakers that doctors themselves were saying they were less likely to diagnose people of color. “We wanted to solve this problem,” says Milsom.
Many autistic characters on screen remain predominantly male and white, as is the case with ongoing series like Netflix. Atypical and ABC medical drama The good doctor. “Disability is very intersectional”, says Rigelhaupt. “I’m an autistic Chinese adoptee with a white single mother. It’s pretty intersectional, and I haven’t seen any story like it.”
Madison Bandy, a local autistic talent from Oakland who is herself non-verbal, was chosen for Renee. When it became clear that Pixar’s cavernous recording studio was not conducive to Bandy’s sensory processing, Milsom and his sound recorder moved to Bandy’s, where they recorded despite the potentially problematic ambient noise.
“If the environment itself is hostile to us, you’re going to have problems when you’re onscreen because you haven’t really dealt with the community you represent,” Pervez notes. Hiring autistic actors and teams for production may include on-set support, such as providing noise-canceling headphones for those sensitive to sound. But for budget-conscious Hollywood, any additional arrangement can be characterized as cost and time prohibitive.
“Those of us who have worked in the industry for a very long time end up feeling that [one] is the only way to achieve perfection, ”notes Milsom. “I think it’s so good to challenge in yourselves, in your team, in your process, in your studio, the concept of what is going to make a wonderful film. See how you cope with someone else’s process. ”
The filmmaker spent weekends on YouTube watching panels and conversations featuring people with autism talking about performing, and talking directly to friends with autism. Advocates and consultants note that first-person accounts are the ones that should inform the creative process. (In tweets since deleted and reported by multiple outlets, Sia mentioned that Music has worked with the charity Autism Speaks, which has long been criticized for its lack of autistic individuals on its board and in leadership positions.) Suggested resources can be found in several self-advocacy organizations , both locally and nationally. as local centers for independent living, or on social networks.
Milsom said, “Don’t go to their parents or their therapist, go to their house.”
As Hollywood seeks to tell more inclusive stories, it is counting on how best to do it. Those who spoke THR for this story, they quickly noted that while research, consultation, and inclusive casting practices are welcome improvements over a past filled with misrepresentation, the best practice is still to employ people with autism in the production. Said Applebaum: “The consultants are great. Writers are better. “
“When you tell a story about a community that is not your own, it’s a responsibility you have to take very seriously,” concludes Pervez. “And if you can’t get the community you’re trying to represent to be part of the process, then that’s a problem the industry has to deal with.”
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