Using assistive technology for Huntington's disease: Carrie's story
Using assistive technology for Huntington's disease: Carrie's story
Carrie Jade Williams has Huntington's Disease and relies on assistive technology to replace her lost skills. Her assistive technology has given her a new voice (literally) and allowed her to share her knowledge and experience with others. But rather than hoping to find suitable accessibility tools for her requirements, she's creating and designing her own.
I can't read. My brain, attacked by the terminal neurological illness Huntington's Disease, has basically eaten its way through itself. As my brain has decayed, I have been left unable to recognize letters or read. This wouldn't be that unusual apart from the fact I only took up writing when I was diagnosed. So how does someone unable to read, hold a pen, or physically type decide they can write?
The answer is assistive technology for Huntington's disease.
My journey with assistive technology for Huntington's disease started in an intensive-care bed in a hospital, with my husband sitting beside me. I loved to talk, laugh, share my thoughts, and debate, but for the first time, we were in silence. Our usual chattiness was stolen by my disease. As devastating as my diagnosis was, this new silence and the fact I would die unable to communicate frightened me the most.
"You'll be OK?" he'd ask, leaning over. He would hold the iPad with images on it, and then I'd point at anything I needed.
I’d started intensive speech therapy, neuroplasticity training, and physical therapy in the hospital. Those early weeks were slow. Each day I was determined to try and relearn how to walk, how to eat solid food, and, above everything else, how to talk again.
A sex and disability podcast reminded me that assistive technology could help. I’d been wrestling with my phone for weeks, trying to press buttons and delete the spelling mistakes highlighted in the little box I struggled to see.
Then I discovered voice commands, and with the single word “Podcast!” the screen moved and lit up the app. Even though my speech wasn’t perfect, it was good enough for my phone to understand.
In those last weeks on the neurology ward, I switched everything to voice-controlled. Being able to order a pizza, pay for it, and have it delivered to the ward, all with the power of my voice, gave me more confidence than anything else. Finally able to email, send text messages and have a level of control, I regained my confidence.
Assistive technology for reading and speech technology
Technology has changed the landscape for disabled people. Rather than have to wait for accessibility tools, we can design our own. Pre-diagnosis I loved technology; post-diagnosis, I trusted that the skills my decaying brain had lost could be replaced by technology.
I was discharged from the hospital as the Covid lockdowns started, and the world began switching online en masse. With endless time stuck at home, I got to work.
Fortunately, I could already code, so with a few YouTube videos, I was able to design the assistive technology I wanted based on my own need.
And I'm not alone. Rather than wait for big businesses to add accessibility tools or create assistive technology for Huntington's disease, we are open-sourcing our own and sharing resources over social media.
The first hurdle to overcome was how to read. I quickly switched to Dragon Talk-to-Text technology, where instead of typing, I spoke my words, and the computer put them on the screen. I also had the assistive technology to read anything on a screen out loud to me.
Screen readers are the quickest way for me to access information – from my bank, for example. The assistive technology is fitted to the camera on my phone and reads and describes what it sees in a way my brain can understand. Although I could ask a loved one to help, screen readers empower me to do things for myself. Something I appreciate.
Although talk-to-text technology could record my speech and screen readers could read words aloud to me, I wanted more. With only 30 percent temporal lobe left, my brain struggles with not only forming sentences but in recognizing the individual letters that make up the words.
Assistive technology for Huntington's disease: electric braille reader
Technically I can still see. The issue for my brain is recognizing what I am seeing. When I realized my brain could no longer recognize letters, I faced two options: switch to audio (where an app reads everything to me) or design my own solution. Braille was a way to bypass the interpretation required by my brain because it involved a different sensory process.
I already used automated closed captions to communicate on apps like Zoom. Memory prompts popped up to help me remember earlier parts of the conversation (and hopefully stop me from repeating myself). The issue for me was that my brain was struggling to recognize the words quickly enough to keep up with the meeting.
I’d learned braille reasonably quickly, so with a voice-controlled program, I could code my own electronic braille reader that ran through the vibrations on my iPhone. Equipped with the handheld electric braille reader that I designed for myself, I would go on to share my story in front of crowds with no one knowing I was reading with my fingers. My brain was able to interpret what I was feeling through my fingers.
Memory-prompting devices have removed the burden from people like me of having to remember abstracts, such as a sequence of events or a narrative. I designed an app for my iPhone that offers picture prompts of what is being discussed.
For example, when I used to watch a box set on Netflix, I would struggle to remember what had happened throughout the season, but the memory prompter provided me with a timeline of critical events and information. Rather than spending the entire time asking repetitive questions, I use the app to check on what doesn’t make sense to me.
Memory prompters can also remind me to take medication, attend an appointment, and send a birthday card enough days in advance to arrive on time. As my memory fades, this app fills in the gap, so I still get to enjoy life.
Living with assistive technology for Huntington's disease
Medical science doesn’t have many treatment options for people like me. Technology can’t heal me yet, but things like the memory prompt, screen readers, and talk-to-text technology ensure I am able to communicate and participate in society. Accessibility is about more than simply including disabled people; it is about inviting them into spaces where they can fully participate.
I still mix my words, switch tenses when I am writing, and forget words, but assistive equipment and technology have given me back the ability to communicate how I feel, email my friends, order online and work. Huntington’s Disease is a horrific illness, but being unable to communicate is the part that scares me most.
I am about to become the first person in the UK and Ireland to have an experimental neurological treatment where technology is placed into my brain. I understand people’s fears about technology, but for me, the choice is clear: I will one day lose the ability to communicate completely, but until then, I’m able to live more with a bit of help from technology.
I get to tell the world about accessibility, and I hope I’ll leave behind a world more willing to listen, even if it’s to a voice that’s robotic.
Using assistive technology for Huntington's disease: Carrie's story is adapted and republished from the Wellcome Collection
All photos in "Using assistive technology for Huntington's disease: Carrie's story: are by Camilla Greenwell - a photographer specializing in dance, performance, and portraiture. She regularly works with Sadler’s Wells, Barbican, Candoco, Rambert, The Place, the Guardian, the British Red Cross, Art on the Underground, and Wellcome Collection.
Carrie Jade Williams
Carrie Jade started writing after receiving a terminal, degenerative, neurological diagnosis, which means she relies on assistive technology to communicate. She is passionate about accessibility, and since winning the prestigious Financial Times Essay Competition she has been busy writing for various projects and podcasting.