What does the term “disability” mean to you?
“Being disabled means to be unique; to face challenges every day to help you grow as a person; to learn to accept yourself and love your limitations,” says my 18-year-old sister who has a rare bone disease called Multiple Hereditary Exostoses. As a disability activist, non-profit owner (Moving with Maya), and a disabled person herself, she knows, first-hand, what living with a disability is like.
I have been exposed to and worked with the disabled community for most of my life. When I think of the term “disability,” I think of it as a different way of communicating, thinking, and expressing oneself. I think of it as a community who is striving to be heard and to not be viewed as a statistic or as a medical diagnosis, but as a people who are able and capable. I think of it as an opportunity to show a world that is so afraid of difference that being different is not something to be ashamed of. That difference is not something negative. That it is not something to marginalize or neglect or depreciate a group of people for. Instead, difference makes our world so much more dynamic and beautiful.
However, I am speaking from a standpoint from which I do not actually know what it feels like to be disabled. Disability will mean something different to everyone, just ask Sia. I am sure most of you have heard about Sia’s new film, Music, which has sparked much conversation by those who have (and even many who haven’t) seen it.
Sia’s new film is about a non-verbal autistic teenager, named Music, played by Maddie Ziegler, who experiences the world through song. She comes under the guardianship of her alcoholic, drug-dealing half-sister named Zu, played by Kate Hudson, when their grandmother passes away. Or as Sia said, this film is “Rain Man the musical, but with girls.”
In this film, autism is portrayed as a complete mockery. It depicts autism in a totally unsettling and ingenuine manner and it further stigmatizes an already depreciated group of individuals. It shows only one manifestation of autism, further perpetuating the stereotype of what autism is like.
As I was watching this film, I felt like it was more about Zu and her self-growth journey, thanks to the suffering of a disabled person and a person of color, Ebo. Go figure. Instead of being her own individual with feeling and thought, Music was just a tool to improve the life of her neurotypical sister. Her character was just built on the idea that autistic people are essentially clueless and helpless.
This thought also came to my mind when watching the film: we have a tendency to speak on behalf of those who we think cannot speak for themselves – in this case, disabled individuals.
We tend to associate them with dependency and the terms disabled and unable become synonymous jargon engrained in the paradigms linked to disability. And so, one of the main
problems with this movie are that a neurotypical teenager played the role of an autistic girl without any preconception, insight, or knowledge as to what being autistic is.
Sia said that the character Music was based off of an autistic boy that she knew. But Music was portrayed in the film only based on Sia’s perception of the boy, not an actual depiction of him. Thus, a misconstrued and inaccurate representation of autism was presented.
Sia did not listen to actual members of the autistic community. She did not attempt to learn about the disability. To learn about how autistic people act, how they think, how they feel. To learn what it is like to be disabled. Sia had every opportunity to make this movie accurate. She just chose not to.
So, not only did this film portray autism in an offensive light, it didn’t even try to accurately portray autism. In addition, she put Maddie Ziegler in blackface – just when you thought it couldn’t get any worse!
There is so much discrimination and prejudice against disabled bodies. Our society is catered toward abled bodies because fixed within our society is the idea that disabled individuals are dependent or unworthy or unable to participate as functioning members of society. This film is guilty of that bias. It features scenes with vibrant, flashy lights and colors, yet fails to provide a warning to those individuals with disabilities who might experience epileptic seizures from the exposure to those flashing lights and vivid visual patterns. This film is catered toward abled bodies, just like much of our world is, even though one of its main characters is disabled.
There is an abundance of wrongdoings in this film, and ableism runs deeply through it (just as it does in our society). But I won’t harp on the film’s issues any further, otherwise this blog post will turn into a 10-page paper. I think it is important, however, for people to be aware of how negatively impactful this film is, as well as how utterly unacceptable Sia’s derogatory responses to critiques of the film and how she went about directing and casting it were.
I am not disabled and cannot effectively speak on behalf of the disabled community about this film. But I can speak about the injustices toward the disabled community and the misrepresentations they are subject to in film, in media, and in our society.
I think disability means strength. It means defying conventional thought processes and breaking toxic social patterns that contaminate our world. It means difference and debunking this idea that being disabled inherently means inability. It means possibility.
So, a note to Sia: the next time you choose to direct a film involving the portrayal of the disabled community (which hopefully will be never again), please do so in an accurate light.
Below you can find a link to my sister’s blog which focuses on ways that people with her bone disease (MHE), as well as others, can keep their physical and mental health in check. Her goal is to change the way disabled individuals view their lives and she uses the following phrase as her mantra: “turn the disabled into enabled.” Check it out if you are interested!
https://www.movingwithmaya.com/gettingstarted
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