In response to Sia’s disaster of a film, Music, CommunicationFIRST have released a video of their own titled LISTEN. Immediately, it evokes memories of the infamous Autism Speaks slogan “it’s time to listen.” This video proves that when it comes to autism discourse, autistic people are the ones who should be listened to first, especially those who are nonspeaking.
Although the narrator can speak, everyone else in the video requires different forms of communication that do not rely on speech. “Just because I cannot speak does not mean I don’t hear,” Rhema Russell says in the video. “I hear everything people say to me or about me. I may not show understanding in my face, but I know and understand. Not a word said escapes my so strong ears.” The video is bound with useful quotes like that one from beginning to end.
It’s often assumed that autistic people are “in their own world,” but they observe the world around them like anyone else does, just in different ways.
Hari Srinivasin, who is a board member of the Autistic Self Advocacy Network (ASAN) and attends UC Berkeley, elegantly illustrates how a lack of proper representation of autistic people can feed into the stigmas they face in society. It’s for that reason why Rain Man created an archetype for the white male autistic savant which permeates in media today like in The Big Bang Theory and The Good Doctor. It reinforces unrealistic expectations and ignores the fact that women and people of color are autistic too. LISTEN is multicultural and made up of many people who are also in the LGBTQ community (autistics are three times more likely as their peers to not identify as heterosexual), which challenges the longstanding traditions of how the group is represented.
As is too prevalent for autistic people, Jordyn Zimmerman is left out of conversations or presumed incompetent because she doesn’t depend on spoken language. Contrary to what some may think, nonspeaking does not mean non-thinking. Thanks to Augmentative and Alternative Communication (AAC), Facilitated Communication (FC), and Rapid Prompt Method (RPM), Zimmerman and the rest of the people in the video provide perfect proof that they are more than capable of abstract thought.
Restraint and seclusion is another huge issue that plagues nonspeaking autistic people (and some who speak as well), killing at least 20 children since 2001. Cal Montgomery, who is also a board member of ASAN and the writer of a powerful blog, recounts his experiences with the dangerous practice in the video. “Every escalation was blamed 100% on me, no matter if they had just done something illegal to me, cornered me, taunted me, taken something I needed, whatever” Montgomery recalled. “Your body is tensing up. Your breathing tightens up. Your fists want to clench. You can feel your body betraying you. You can fight or fold. It’s up to you. You are hitting the ground either way. You are face down on the floor. You may relax, you may beg, you may play dead. None of it works. If you show pain, they will show you more pain. I thought I was suffocating, and I called out to say so, and they laughed. From the way people who use restraint talk, you might think it is an almost surgical procedure. It’s not. It is a fight with a predetermined winner who isn’t you.”
His experience might sound no different than a horror movie, but it’s a reality that many autistic people face daily. Although over 30 states have banned the use of prone restraint, people are still being harmed by it in the remaining regions in schools, group homes, and institutions. According to the Alliance Against Seclusion & Restraint, there are alternatives to restraint such as Ukeru, which uses a trauma-informed approach to deescalate difficult situations rather than with force.
Although autism is a disability that can require lifelong care for some, autistic people must be the narrators of their own lives. Each person may have different communication needs, but once those are met, their potential is greatly enhanced. CommunicationFIRST’s aim is to ensure that every disabled individual has the support they need to express themselves effectively and to be heard – LISTEN emphasizes how important that truly is, as nonspeaking people are often rendered invisible. With their leadership guiding the autism narrative, future generations can benefit from their wisdom, as they have only ever known a world that wasn’t built for people like them in mind. Nobody knows what could make the world easier for autistic people to live in but autistic people themselves. As the saying goes… “nothing about us without us.”