There’s a lot of talk about the new ABC family sitcom Speechless, which premieres tonight. It marks the first time a network show will feature a lead character who uses an augmentative and alternative communication system (or AAC, as speech-language pathologists call it) instead of oral speech to express themselves. For many viewers, teenage J.J. (Micah Fowler, a speaking actor with cerebral palsy) may be the only AAC user they’ve heard of besides Stephen Hawking.
In the pilot episode, which I watched when available online last week, J.J.’s outspoken mom Maya DiMeo (Minnie Driver) is determined “to get [him] a voice” so that he can be placed into a mainstream high school classroom. Here, a “voice” refers to an aide hired to read aloud the words that J.J. points to on the communication board mounted to his wheelchair.
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But what else might “voice” mean? And why do these meanings matter—not only to people with disabilities and their families, but society at large? Augmentative and alternative communication systems, like any technology, have incredible potential to support agency, independence, and personhood. But they do not enter into a vacuum devoid of other injustices.
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I spent a year and a half interviewing and observing families much like the fictional DiMeos for a forthcoming book. Unlike J.J., the children that I studied communicate primarily through an Apple iPad and an app called Proloquo2Go that converts the text, pictures, and symbols they select on-screen into synthetic speech.
Ever since computerized AAC systems emerged in the 1970s, mass media have promoted the idea that they “give voice to the voiceless.” A 1980 profile in the Los Angeles Times on a device called the Canon Communicator proclaimed, “Electronic Help for the Handicapped: The Voiceless Break Their Silence.” Similarly, Microsoft’s 2014 Super Bowl ad featuring former NFL player Steve Gleason, who lost the ability to speak due to ALS, contends the Microsoft Surface Pro tablet has “given voice to the voiceless.”
In these examples, “voice” means more than spoken language; it represents liberation. Moreover, they promote the idea that AAC systems are inherently liberating. While the voice-giving nature of communication technologies such as Twitter have been open to debate, this has been less true historically for assistive technologies like AAC systems. More often than not, it is assumed that individuals with disabilities are in need of fixing, and that technology repairs them.
But sometimes solutions that “give voice” also create new problems. Technologies largely thought to universally empower the “voiceless” are still subject to disempowering structural inequalities.
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Maya DiMeo reminds me of Vanessa*, a working-class, single mother in her early 30s who I interviewed for my book. Like Maya, Vanessa saw more broken in society than in her child, 10-year-old minimally-speaking and autistic Moira*. Vanessa credited the iPad and Proloquo2Go, provided by Moira’s school district, with increasing her daughter’s attempts at oral speech. But while AAC provided Moira with “voice” to some extent, on multiple occasions she also encountered social institutions that silenced her.
For example, a year after Moira had been using the system, her school district suddenly decided that iPads were to remain on campus out of concern that students would break them elsewhere. Vanessa believed this was a violation of Moira’s educational rights, but she did not have the money to hire a lawyer. She saw no option but to ask her abusive ex-partner, Moira’s father, for financial help. “At the time,” confided Vanessa, “there was no way I could afford an iPad [on my own].”
On another occasion, Moira had gone missing from home but didn’t take her iPad with her. She had walked to Starbucks, one of her favorite places, where the baristas called the local police. After discovering Moira’s disappearance, Vanessa dialed 911 and rushed to the station. Once there, she was dissatisfied with how the officers handled the situation. They tried to get Moira to write, unaware of how else an autistic individual might communicate. “There are police agencies that do have that training available. But clearly [ours] didn’t,” Vanessa pointed out with thinly veiled resentment.
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We cannot abstract “voice” from institutions, like schooling and policing, that regularly do a poor job of listening to the concerns of those less privileged in society by virtue of their disability, as well as their race, ethnicity, gender, and class. The producers of Speechless will inevitably need to address these complexities, for at the end of the pilot episode, we learn that J.J.’s new “voice” will be Kenneth (Cedric Yarbrough), a black groundskeeper at the school.
It’s thrilling that TV audiences will now see more portrayals of AAC, and that AAC users and their families will see aspects of their experience represented in mass media. As for me, I’ll be listening closely to find out what else Speechless has to say about “voice.”
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