We need to listen to autistic people's critiques of their portrayal in Sia's 'Music'

When the trailer for Sia's directorial debut movie "Music" was released in November, the Australian singer faced intense backlash from people in the autistic community who felt that the portrayal of an autistic character played by Maddie Ziegler (who is not autistic) was problematic. Advocates also expressed concern about the use of harmful restraint techniques shown in the trailer.

At the time, Sia engaged in heated public debate with her critics on social media, ultimately ending with the statement, "I really hope you see the movie (s)o you can be less angry."

Now the movie is out, and autistic people are commenting on the full film—and they are definitely not any less upset.

The Autisticats is a group of autistic young people who share their experiences with being autistic (among other things) online. On their Twitter account, one of them offered a "detailed & chronological review" of the film.


First they shared images and a clip from the film that show the exaggerated mannerisms of the autistic main character, in addition to a scene with strobing lights and overwhelming visuals that would be difficult for many autistic people to sit through.


Their explanation of what was problematic continued in the thread:

"This performance is a caricature of autistic body language. It's unsettling, and insincere. And it is deeply reminiscent of the exaggerated mannerisms non-autistic people often employ when bullying autistic & developmentally disabled people for the ways we move.

There is absolutely nothing wrong with the ways autistic people move, or the ways we make facial expressions. Some of us roll our eyes and put our teeth over our lips as a stim or just because it's comfortable. But we do those things naturally. Maddie Ziegler does not.

The fact that Ziegler is not autistic, and the fact that her performance is so heavily exaggerated, turns the entire movie into one long display of mockery. I know that 'wasn't Sia's intention.' But it doesn't make things any easier to stomach.

Two other things I want to touch on: 1. The strobing lights and colors in the dance scenes are extremely overstimulating, and could cause seizures in people with photosensitive epilepsy (common in autistic people) 2. The restraint scenes are still there, without a warning.

I was under the impression, according to Sia's apology and accompanying promise, that: A. There would be a warning at the beginning of the movie regarding the danger of restraint, or B. That the restraint scenes would be removed from the film entirely. That isn't true so far.

If this thread prevents just 5 other people from watching this movie, it will have been worth it. I know people are curious. And I also know it's not my responsibility to bear the burden of watching this film for the community. But I want to serve the greater good.

I want to be able to provide my perspective from as informed a position as possible, and I couldn't do that without actually watching the film. I'll be writing my review and posting it when it's done. I don't know if this was a good idea. I just want it to be worth something."

With the film receiving two Golden Globe nominations—one for best motion picture, musical or comedy, and one for best actress in a musical or comedy (for Kate Hudson's performance)—the controversy is extra heightened, and many people from the autistic and disabled community are weighing in. A petition requesting the Golden Globes to rescind the nominations due to the movie being "severely ableist" and contributing to "harmful stereotypes of autistic people" has been signed by nearly 50,000 people so far.

According to Vanity Fair, Sia has said that a disclaimer will be placed at the beginning of the film that reads: "MUSIC in no way condones or recommends the use of restraint on autistic people. There are autistic occupational therapists that specialize in sensory processing who can be consulted to explain safe ways to provide proprioceptive, deep-pressure feedback to help w meltdown safety." She also said that future releases of the film will have the restraint scenes removed.

Though Sia has defended her good intentions in the casting and directing of the film, she has also apologized repeatedly for the film's portrayal of autism. "I listened to the wrong people and that is my responsibility," she wrote on Twitter, "my research was clearly not thorough enough, not wide enough." She has since deleted her Twitter account.

More details about the making of the movie have come out that indicate there were some red flags even in the midst of filming. Sia said that Maddie Ziegler herself, who played the role at age 14, broke down crying one day and told Sia she was afraid people were going to think she was making fun of autistic people. Sia reassured her that she wouldn't let that happen.


What Sia should have done is seen the teen's discomfort as a sign that perhaps there was something problematic in the way the role was being played and sought more advocates in the autistic community to consult about it.

Though "Music" certainly isn't the first movie to have a neurotypical actor portraying a neurodivergent character, the issue has been brought up so many times following other films and society has become so much more aware that it's quite clear that the issues in this film could have been remedied with more meaningful inclusion of autistic people in the filmmaking process.

Grappling our way toward becoming a more accepting, respectful, and truly inclusive society is a messy process. Let's listen and learn from these responses and conversations so that harm to already stigmatized communities can be avoided in the future.

Since his first hit single "Keep Your Head Up" in 2011, award-winning multi-platinum recording artist Andy Grammer has made a name for himself as the king of the feel-good anthem. From "Good to Be Alive (Hallelujah)" to "Honey, I'm Good" to "Back Home" and more, his positive, upbeat songs have blared on beaches and at backyard barbecues every summer.

So what does a singer who loves to perform in front of live audiences and is known for uplifting music do during an unexpectedly challenging year of global pandemic lockdown?

He goes inward.

Grammer told Upworthy that losing the ability to perform during the pandemic forced him to look at where his self-worth came from. "I thought I would have scored better, to be honest," he says. "Like, 'Oh, I get it from all the important, right places!' And then it's taken all away in one moment, and you're like, 'Oh, nope, I was getting a lot from that.'

"It's kind of cool to break all the way down and then hopefully put myself back together in a way that's a little more solid," he says.

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Since his first hit single "Keep Your Head Up" in 2011, award-winning multi-platinum recording artist Andy Grammer has made a name for himself as the king of the feel-good anthem. From "Good to Be Alive (Hallelujah)" to "Honey, I'm Good" to "Back Home" and more, his positive, upbeat songs have blared on beaches and at backyard barbecues every summer.

So what does a singer who loves to perform in front of live audiences and is known for uplifting music do during an unexpectedly challenging year of global pandemic lockdown?

He goes inward.

Grammer told Upworthy that losing the ability to perform during the pandemic forced him to look at where his self-worth came from. "I thought I would have scored better, to be honest," he says. "Like, 'Oh, I get it from all the important, right places!' And then it's taken all away in one moment, and you're like, 'Oh, nope, I was getting a lot from that.'

"It's kind of cool to break all the way down and then hopefully put myself back together in a way that's a little more solid," he says.

Keep Reading Show less
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Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."