Actors with Autism advocate for better Hollywood representation following Sia's new film about ... [+]
Lillian Carrier made her acting debut earlier this year. The Los Angeles native plays Drea on Freeform's new series Everything's Gonna Be Okay— an exciting new venture that happened by chance. Carrier, who has autism, grew up using acting as a way to improve her social skills. But that hobby turned into a career after a job coach spontaneously encouraged her to try out for the part, and she booked the gig.
This opportunity, while serendipitous, is an anomaly in Hollywood, especially among the disabled community. It's the reason why advocates and people with disabilities fiercely fight for more inclusivity and better representation.
In short, it's why they ask to at least be considered for parts where the character has a disability.
Oftentimes, though, that doesn't happen, and the latest example caused a firestorm on social media, reigniting the debate over disability-centric casting choices in Hollywood. Sia, the Australian singer, known for hits like "Chandelier" and "Elastic Heart," dropped the trailer for her film Music on Twitter, saying, "The news you've been waiting for!" She wrote and directed the movie with an expected release in 2021.
The movie portrays a non-verbal teenager with autism who conveys her feelings through a tablet. The character is based on Sia's neuroatypical friend. (Neuroatypical, a term familiar to many in the disabled community, is a relatively new way to describe someone's neurology when it is not within the realm most people consider 'normal.') But like many Hollywood films, the character cast in the role, Maggie Ziegler, is not disabled.
The reaction on social media was swift.
Lillian Carrier, an actress with autism, was offended by Sia's responses on Twitter to the disabled ... [+]
"I came across the trailer, and I got super excited that it is an autistic movie with autistic characters,” Carrier said. “Then I started watching it, and I felt a little uncomfortable with the way I was seeing the character portrayed.”
"I wasn't sure the direction it was going, or if it was going to be ‘inspirational porn’ (a term often used that describes the portrayal of people with disabilities as inspirational solely or in part based on their disability), so I dove into the comment section. And that's when I got really upset."
Carrier and many other autism advocates, and people with autism, replied to Sia's tweet, some asking why she had not chosen an autistic person for the role, and others questioning whether Sia had consulted with anyone autistic when creating the movie.
The replies from Sia left many people in the disability community completely stunned.
Helen Zbihlyj responded to Sia on Twitter saying she had replied to one of her casting calls and that "zero effort was made to include anyone that is actually autistic.”
Sia’s response: "Maybe you're just a bad actor."
When Bronagh Waugh, an Irish actress, tweeted asking why Sia chose to cast a non-disabled actor, Sia responded by saying, "Casting someone at her level [the cognitive level of Sia's neuroatypical friend] of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community."
It was a response that many in the community found offensive and ableist.
"The way Sia responded to the criticism and the things the autistic community was saying was so angry and so attacking," Carrier said. "And that's really what upset me the most."
"Rather than listening to what people had to say, she just attacked them. And that was just really uncomfortable and hard to see."
Tal Anderson, an actress with autism who played Sid in Netflix's Atypical, agreed. Both Carrier and Anderson would like to see more people with disabilities playing the roles of disabled characters, but agreed that sometimes, that can't and won't happen.
"There are so many reasons why casting is the way it's done, and there are so many reasons stories are told," Carrier said. "And people don't know what they don't know, so I always approach from the side that she probably had really good intentions, but good intentions don't always have a good outcome. And to hear what the community is saying that you're trying to support and then straight up ignoring it is just as hurtful."
Tal Anderson, an actress with autism, hopes the controversy surrounding Sia's film "Music" is a ... [+]
Anderson echoed Carrier's sentiments.
"I understand that casting decisions are made for a lot of reasons and that a movie is a business, and they have to decide what they think will make their movie successful," Anderson said, while adding, “It's 2020, and a lot has changed."
"This was such a great opportunity to tell the story of an autistic person with no voice. Non-verbal autistic adults are not portrayed on screen often and never portrayed authentically."
Disability representation in films and television has improved in the last few years but is still not representative of America's disability population. The vast majority of characters with disabilities are played by people without disabilities, which many feel contributes to pushing the same outdated tropes.
According to the CDC, one in four people in the United States identifies as disabled, but only about 2.5% of speaking roles in Hollywood films portray a disability. Non-disabled actors play 80% of those roles. The numbers are bleaker still for people with disabilities playing a part that isn't defined by disability.
But it's not just acting roles: writers, directors, and behind-the-scenes professionals with disabilities are also scarcely represented. According to the Writers Guild of America West's 2020 Inclusion Report, 26% of adults in the U.S. identify as having a disability. Yet, self-identified writers with disabilities make up less than one percent of current, active WGAW members. The WGAW says this disparity may partially result from under-reporting, but suggests that, at the very least, it points to severe employment discrimination.
This lack of professionals with disabilities often leads to inaccurate portrayals and the creation of incorrect information surrounding the disability community. That's part of the reason why Alex Plank, an actor with autism who appeared on ABC's The Good Doctor and FX's The Bridge, was unsettled by Sia's responses on social media. Plank also found the performance by Ziegler in Music's trailer to be offensive.
Alex Plank, an actor with autism, was offended by the trailer for Sia's new film, "Music."
"When I first saw the trailer, I watched the stuff the actress was doing, and it hurt me because, you know, it looks like she's mocking," Plank said. "She's walking down the street doing this stuff sort of with no sense of purpose, no sense of anything that would resemble a reason to be doing it. It's like she just saw something someone with Autism did and copied it."
Plank was also disheartened by the seeming lack of involvement from autistic individuals in the film.
"I wouldn't have been upset if I saw this, and it was good, because then generally, there was some meaningful involvement by people like me either behind or in front of the camera," Plank explained. "I think people look at this, and they're making it seem like every single person in a movie about autism has to be autistic. No, I mean, let's say, the writer’s autistic, or the directors are autistic, that's going to mean a lot more than if one actor is autistic."
Sia said on Twitter she hired "thirteen neuroatypical people, three trans folks, and not as fucking prostitutes or drug addicts but as doctors, nurses and singers. Fucking sad nobody's even seen the dang movie."
Sia also said she consulted over several years with Autism Speaks, an autism advocacy organization.
A spokesperson for Autism Speaks said, "Autism Speaks was not involved in the casting or production of the film, "Music." Representation matters, and we believe autistic actors should always be given opportunities to play autistic characters."
Sia's reps didn't immediately respond to a request for comment. But the singer said on Twitter, "My heart has always been in the right place."
Tina Green (left), an actress with autism, was in Sia's film, "Music," and believes Sia's heart was ... [+]
Cynthia Green, the mother of Tina Green, a 24-year-old actress with autism, agrees. Tina was cast as a small part in Music, which was filmed in 2017.
"I'm one of these introverted people that doesn't ever publicly speak out, but I feel very strongly that there's another side to this that people aren't even considering," Green said.
"In 2017, when this was filmed, my daughter was not getting auditions for lead roles. She was getting more, you know, more background, co-star roles. And so for me, I see it as a huge victory that in a little over three years, we're seeing a lot more opportunities for people with disabilities to audition for lead roles."
Green and Tina fear that the backlash will prevent the film from being released.
"If the bashing doesn't stop soon, the movie may never come out," Tina said. "People haven't even seen the way she included actors with disabilities. I wish I had gotten the lead role, of course, but I was happy to be a part of the bigger story."
Gail Williamson, an agent with KMR Talent Agency, who heads up their diversity department and represents people with disabilities, says she wishes she was consulted on the film and given the chance to audition some of the incredible talents with Autism on her roster. But she says in the years before the filming of Music in 2017, it was more commonplace and accepted to have a non-disabled actor play a disabled character.
"In 2017, when our fall lineup came out of new shows, we had The Good Doctor, with Freddie Highmore and Atypical with Keir Gilchrist (Freddie and Keir are non-disabled actors playing disabled characters)," Williamson said. "So in 2017, when this was made, even though those of us in the disability community would tell you, this is not right, the larger studio community had not yet felt that way."
"So this film, by not being released for three, four years, has gotten caught in this crazy place."
Williamson's son Blair, who has Down syndrome, had a small role in Sia's film Music. Williamson said she didn't know what the film would be about when he shot his part because his role was small with no speaking lines; they never received a script.
"My first impression of Sia was that when she worked with Blair, we found her lovely,” Williamson said. "When I saw these tweets she was sending, I thought, 'Oh my gosh, that's not the woman I experienced.’"
Williamson thinks the uproar to Music by the disability community shows how far the industry has come. She sees it in the amount of money the performers on her roster have made. Williamson says the actors with disabilities represented by KMR in 2013 collectively made $50,000. In 2019, they collectively made over $3,000,000.
"It's moving like a freight train," she said.
Many of the autistic actors who responded to Sia online believe she may have had the right intentions but, again, were hurt by her execution and responses. That includes Coby Bird, an actor with Autism who has been in shows like Speechless and The Good Doctor. He was recently cast in Netflix's Locke And Key.
Bird posted a letter to Sia on Twitter.
"I am not going to judge her or her film," Bird said. "I will watch it and give it a chance. But we need to help teach people instead of getting mad or using mean language. We need to try and be understanding and not use social media to "troll" people. Her responses were hurtful."
Bird and many of the other actors who responded say all Sia needs to do to make it right is apologize and show empathy.
"I think she needs to hear what the collective community has to say. Hear where we are coming from. These are our stories, and we are hurting," Bird said.
Samantha Hyde, an actress with autism on Atypical, felt compelled to create a reel that featured actors with Autism.
"When I heard this story, I knew it was the time to put a spotlight on some of the many talented autistic actresses that I know and let the world see how diverse autistic people are. As autistic women, society has forced us to pass as neurotypical for many years and the opportunities to tell our stories on the screen are few and far between, even more so for neurodivergent people of color," Hyde said.
"There is very little representation of disabled people, and so it's crucial that these opportunities should go to disabled actors. I made this reel because I wanted people to see us and to cast us and others like us in both disabled and non-disabled roles."
Julia Bascom, the Executive Director for the Autistic Self Advocacy Network, a national disability rights organization run by and for autistic adults and people with similar developmental disabilities, chimed in on Twitter to the Sia controversy with a response that has gone viral.
Bascom encouraged the conversation to continue but wants to focus on the lack of representation and casting of non-speaking actors with disabilities.
"Non-speaking people are some of the most marginalized folks in our community," Bascom said. "[They] exist, but it is incredibly rare for them to be hired, even compared to other disabled actors. This has real consequences for them and makes them invisible."
Bascom said people who don't use speech to communicate face additional marginalization as a result. She believes that is seen in some of Sia's social media responses— specifically the reply that said casting a non-speaking person would have been "cruel."
"It's important to be clear that that's not the case, that non-speaking actors exist and are competent and talented and need accommodations, sure, but not pity or dismissal," Bascom explained.
Bascom also wants the Sia controversy to open up a much-needed discussion surrounding including people with disabilities in all facets of productions in Hollywood. She said the conversation surrounding disability casting is usually overly simplistic.
"Actors with visible disabilities are rarely considered for roles that aren't written as disabled roles—you don't see a lot of Blind actors being cast as characters that weren't already intended to be blind. That's a problem in and of itself. The only jobs they are considered for, typically, are disabled characters. So when non-disabled actors are cast in disabled roles, those jobs are also taken away. This makes it very hard for the many talented actors with visible disabilities to find work, which leads to the belief among directors and producers that disabled actors don't exist," Bascom said.
Bascom believes Sia should now meet with organizations led by autistic and non-speaking people to talk about using her platform to repair the harm that’s been caused, and support the autistic community. Many other advocates and organizations agree and suggested several different ways they believe Sia could make it right, like donating the proceeds from the film to an organization that supports people with autism.
Lauren Appelbaum is the vice president of communications for RespectAbility, a nonprofit that fights stigmas and advances opportunities so people with disabilities can fully participate in all aspects of community. RespectAbility serves as a resource for productions and creative executives to help make content more inclusive and accurate. Appelbaum was disappointed by Sia's choice to cast a non-disabled actor for a character with a disability, and believes if she had cast someone with a disability, the movie would ultimately perform better.
"According to Nielsen, the disability market is valued at $1 trillion worldwide. And so, when you bring in an actor with a disability, you're going to bring in a whole other audience," Appelbaum said. "People would want to see themselves, so you'd have a lot of autistic individuals wanting to see this movie, but you would probably also have people with other disabilities as well. We're thirsty to see more positive, more authentic disability representation on screen."
Meanwhile, actors like Anderson, Bird, Plank, and Carrier hope this situation doesn't dissuade the hiring of people with autism and other disabilities in the future. They all reiterate the backlash was more due to Sia's responses on social media, and hope this is a teaching moment for Hollywood professionals to realize the importance of authentic casting, and the need to further inclusivity and diversity of people with disabilities.
“We all have a Rain Man story where people think we are magical mathematicians because that movie was the only representation at the time. We've come so far that people realize, oh, Rain Man isn't the only person with autism, there are many different versions of people with autism,” Carrier said.
"I feel like the more that we can push the industry to tell our stories, and to get it right, the more we can change the world."
