by Cassandra Stafford, MS, SLP/L, ATP (speech-language pathologist and assistive technology professional); NWACS board member

reading time: 3 minutes

The views expressed in this post are those of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied regarding any device, manufacturer, resource, or strategy mentioned.

Let’s dive into a quick overview of a book featuring AAC:

Book Title: Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance

Author: Ady Barkan

Published in 2019

Age Range: adult

Book Type: nonfiction / memoir

How AAC is Featured: The author was diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. He passed away in 2023 at the age of 39. While the book focuses on Ady’s life as a lawyer and social justice activist, through his words we witness his physical body deteriorate. Including his ability to speak. At the very end he shares about starting to use vocal amplification and then text-to-speech to augment his spoken communication.

Note: I am not an AAC user, nor am I a parent/guardian or caregiver of an AAC user. I am a speech-language pathologist. So I am coming at the book from this perspective. I borrowed the book from my local library through the Libby app.

ALS is a heartbreaking terminal disease. Ady’s age of diagnosis (32) made it all the more devastating. (Fair warning, there is profanity and talk of marijuana use in this book.) I feel like the glimpses Ady shared about his disease progression grew my outsider’s perspective on what living with ALS (and with a loved one with it) is like.

I went into this book thinking there would be more inclusion of Ady using AAC. What I didn’t realize was that his memoir ends just as Ady was coming to accept and use technology to augment (and then later replace) his ability to speak. Honestly, I was sad that he didn’t embrace technology to support his ability to communicate earlier.

Losing our ability to speak (something many of us take for granted daily) would be devastating for any of us. Ady was a speaker and activist. How do you lead and protest and rally when no one can hear you? Late in the book, he mentions using an amplifier to boost his voice so he could be heard. As his voice continued to fade, he focused on using his speech as economically as possible. As that combination started to fail to meet his needs, he often relied on people who knew him well to translate or re-speak what he said verbally. At the very end of the book, he mentions having created a digital voice via voice preservation (which he didn’t like and didn’t use) and using text-to-speech on a Microsoft system with eye tracking capabilities.

This memoir is mostly about the author’s social justice activism. It is about how he chose to live while dying. To me, it also shines a light on how any one of us can become disabled when we least expect it.

After I read this book, I discovered a documentary about Ady Barkan (the author). I watched it on Hulu. (Note: as with the book, there is profanity and talk about marijuana use in the film.)

Title: Not Going Quietly

Released in 2021 (two years before Ady’s death)

Film type: Documentary

The film overlaps a little with the end of his memoir (book), but takes us a little further in his life. We see him using voice amplification. Later, we see the “unboxing” of his communication device. And we see Ady struggle to accept losing the ability to speak. We see him use his AAC device a little. One of those times is when he uses his AAC device to give a speech to congress. Interestingly, his team needed to convince him to deliver his speech himself using his AAC device instead of having someone else read his words for him.

As with the book, the documentary covers a lot of his activism. However, we get more glimpses into how his ALS diagnosis impacted his family and daily life. Two moments stood out to me. The first was when his son was a young toddler and Ady was still trying to use his voice to communicate. Often, his son was not able to hear or understand what Ady was trying to say to him. So it appeared like his son was ignoring him. The second was a time Ady used his AAC device to communicate and his son praised him for “learning to talk”.

Have you read this book? Or watched this documentary? What did you think?