Angela Parker-Brown's memoir was published in late August of this year.
“Although I have ALS, I am not ALS. I am Angie.”
That’s a sentiment Angela Parker-Brown emphasized when I interviewed her recently over email. The 50-year-old mother of twin girls and two fur pups lives in Truro, Nova Scotia with her family. In 2016, she was diagnosed with amyotrophic lateral sclerosis (ALS), colloquially known as Lou Gehrig’s disease, which caused her to learn a lot about herself and adapt to new ways of living life—with a huge assist from technology.
ALS is a neuromuscular disease for which there is no cure. It’s a progressive nerve condition that affects the nerve cells in the brain and spinal cord. As they are responsible for muscle control, ALS robs a person of moving, eating, swallowing, and breathing independently.
Since receiving her diagnosis six years ago, using technology has become central to Brown’s livelihood. For her, “technology is life” and she “cannot imagine what my life would be without [it].” The nexus of Brown’s technological use is a product from Sweden-based assistive technology maker Tobii Dynavox, whose chief executive, Fredrik Ruben, has been interviewed many times over the years for this column. Brown uses the company’s PCEye, a USB-powered device that allows people to use their computer using eye-tracking technology. The hardware is supported by Tobii Dynavox’s TD Control software, which is included.
“Technology allows me to continue a meaningful and interactive life with my children,” Brown said of tech’s influence. “I’m able to communicate with them as I did before I lost my voice. I can continue to parent, discuss how a particular day went, share our feelings on ALS, and discuss emotions. We’re able to continue to make meaningful memories, all with the help of technology. This goes for family and friends as well.”
Brown discovered Tobii Dynavox by browsing various ALS groups on Facebook, where people would share tips and tricks on how to best use their products. “At the time, I didn’t really know what they were talking about,” she said of learning of Tobii Dynavox. “All I knew was that there was a device that could allow me to communicate after I lost my voice.”
Brown took her newfound knowledge to Dee Osmond, an occupational therapist with the Assistive Technology Program at the ALS clinic in Halifax. Osmond helped her navigate what she would need from Toby Dynavox, then later was put in touch with one of the company’s Canadian representatives. After ordering the PCEye, Brown had it shipped to Osmond to assist with putting everything together before ultimately sending it back. She switched from using smartphones for communication to using the PCEye in 2021 due to increased difficulty in reliably using her hands. When asked if there’s anything about the PCEye she felt can be improved, Brown ran an end around, saying she “only [has] good things to say about my Tobii Dynavox device.” She found her PCEye “very user-friendly” out of the box and was comfortable after only one Zoom training session. The device is “an extension” of Brown; she said it’s “my voice” and goes with her everywhere she does.
ALS may have taken Brown’s literal voice, but she wasn’t left voiceless.
Armed with her trusty PCEye, Brown resolved to write a book. The impetus for her memoir, titled Writing With My Eyes: Staying Alive While Dying, came from a Facebook group called Angie’s ALS Journey, where Brown would regularly update members on her well-being and other matters related to her disability. Writing was a source of self-therapy for Brown, as she would write prose such as poetry. The feedback, Brown told me, was so encouraging and supportive that people began to tell her she should write a book. It was published in late August.
“I began writing more and more because it was now physically much easier to write thanks to my [Tobii Dynavox],” she said. “I started to receive messages such as ‘You should collect these for a book, you should write a book of poetry and you should write a book.’ So I took the challenge and wrote a book. I wrote a rough outline and a few chapters.”
Bown added: “I wanted to share my journey and how my journey with ALS had come to open my mind to an entirely new world of possibilities [with technology]. Would I rather not have ALS? You bet. But having it won’t stop me from living and growing.”
Brown had so many ideas for the book, she enlisted the services of editor Bev Hotchkiss. Hotchkiss would help her map out her ideas and organize the book and copy. Brown is especially thankful for the support of her publisher, Pottersfield Press, for helping her tell her putting her voice out into the wider world and tell others of her story. Brown is even more thrilled her book is available on Kindle and its ilk. Its digital-first nature makes her story much more accessible to others with ALS, or those who simply prefer reading long-form on an e-reader and its e-ink technology.
Brown is a firm believer in technology’s potential for empowerment.
Through accessibility and assistive technologies, modern technology has enabled people like Brown—and of all disabilities, myself included—to have a voice and have access to, and feel included in, the world. Brown said it’s “amazing” that she could write an entire book only using her eyes, while a non-verbal autistic person can use a tablet like an iPad to communicate with others in innovative ways. The metaverse and cryptocurrency and NFTs are one thing—technology for technology’s sake—but assistive technology like what Brown uses is real innovation.
“I believe technology has empowered those of us with physical and mental challenges by giving us a voice—giving us the ability to continue to learn and grow,” she said. “[It gives] us the capability of a quality of life that would not even be comparable to the [non-existent] quality of life we would face without technology.”
