It is so easy to see someone’s disability and not see the person at all.
Assistive technology melds technology with people that have disabilities, to enhance their lives in regard to being able to learn, work or navigate daily life. Say what you will about the Muscular Dystrophy Association (MDA) and it’s telethons (a thing of the past) but when they offered to loan and in some cases give, my late spouse Howie, state-of-the-art technology valued in the thousands of dollars, we welcomed this.
This arrival of the latest technology (this was 2000 to 2005) to our busy home of cats, a dog and three school-age children, was appreciated. Technology came in the form of a special desktop PC, set up beside mine. At the time, Howie was confined to a power chair (also supplied by MDA) and at the time he still could talk and keep his head upright without a towel around his neck to support it. He still could move his arms but finger coordination was not happening.
With a jar of various sticks nearby, he could get one into his mouth and easily use them to peck on the keys.
This set-up allowed him to do eBay transactions and to pass hours playing the games online that he loved so much. He was out of work (as a roofer) for the first time since he was 16 and filling his days was important to his well-being. He still fed himself then, using silverware our middle son Jer had encased in polyethylene foam pool noodles. It allowed for better grip with fingers that were stuck in a claw like contracture. He’d asked me to duct tape his fingers straight down on some cardboard when he slept which I did to humor him but in the morning they were bent again.
Our oldest son Jeff, who had just been diagnosed with autism, as was I, expressed himself best through his girlfriend who’d moved in to help us out since I did not drive.
Howie lost further mobility from the ALS (a motor neuron disease also known as Lou Gehrig’s, but honestly who would want a terminal disease named after them??) It would eventually paralyze all his muscles including his vocal cords and smiling muscles, so he lost ability to speak clearly and to use facial expressions.
The prognosis was five years and there is not a cure, just measures to make a person more comfortable. The disease never affects sexuality or the brain. It is easy to feel trapped within the body, like a prison, with intellect and wit and humor and all the things you were before the disease, still intact.
Howie had ADHD and couldn’t be still when he was well. If we went on a picnic, he’d climb a tree, impulsively dash into a stream up to his waist or climb up into the rafters at a pavilion and eat his sandwich there.
The desktop was taken away and new technology came in. I was the sole 24 hour a day caregiver and especially thrilled with adding this very important new communication device to the repertoire of machines I operated, cleaned, and maintained: the yangour throat suction device, the bi-pap, the feeding tube in his belly, etcetera. I had notes taped up everywhere!
A woman came into our home over a series of a half dozen visits to train me on how to set things up. There was a tablet, and it was important to use specific braces that were difficult to understand but important, to attach things within eye level to the power chair itself with bolts and things. After the trainings, the technology was all ours.
Howie’s father made a special lap board with a notch cut from the side which allowed room for the hand controls I used when I navigated him to the bathroom or bed. He bought a van too for doctor appointments. Sometimes our youngest child Kerry (now Silas) would sit on her father’s lap and drive him around outside.
This tech woman greeted my late spouse the same way every time, “Hello Herbert!” Or sometimes it was some other name that began with an “H.” I’d correct her and then the hour long training session would begin.
A speech generating program was installed on the tablet. Howie could type something and with a click, the sentences would be spoken aloud by the device. This allowed for him to store anticipated pre-typed responses to questions his parents might ask at a visit; such as if he was ‘feeling okay,’ or ‘yes, he saw that guy win the stock car race on tv or saw his baseball team lose’ and here’s what he thinks.
As I said, the woman taught me to set up the technology. There was a device to put on his forehead which shone a red dot onto the screen like a cursor. He had just enough movement between his knees for me to Velcro a mouse there which is how he selected things on the screen. His head had to be kept very stable with supports so that the slightest movement (which was all he could manage) would move the laser dot.
The night before the woman was due to come for a training session (yes I addressed her at the time by her correct name) Howie asked me to set up the device. He had a mission. I had written out a cardboard letter board and would point to each letter and he could tell me his wants or just converse. His speech was garbled and weak after a suction but would disappear pretty quickly. He wanted to type something. It was slow going but he was determined to have something ready to say to her.
He worked really hard on that greeting.
The woman arrived. We had the machine set up and ready to go. She greeted him as usual. “Hello Harvey!” I cringed but did not correct her.
I told her he had a greeting and she patiently watched, smiling as he selected the file and chose his sentences. Mind you, this technology had the same exact iconic robotic-sounding voice that Stephen Hawking used. Howie clicked Play:
Hello. My name is Howard. Not Herbert. Not Harold. It’s Howard. Get it right!
She got his name right for the remainder of the visits.
It is so easy to see someone’s disability and not see the person at all. Her career path was to help people with disabilities communicate with the use of technology. But unfortunately she never saw Howie, the person. His name was on all the paperwork of course. He was not about to be invisible. Assistive technology is important and it’s what drew me to the software work I do today at Ultranauts.
Howie did not live to see my book published but he knew it was forthcoming and supported me in its creation: https://www.amazon.com/Under-Banana-Moon-Living-Aspergers/dp/150572886X
KimberlyGerryTucker is a QA specialist at Ultranauts- a quality engineering firm powered by exceptional neurodiverse teams. She is currently serving on the board with Art of Autism. Kim has been a published writer since 1999 (an award winning writer since 2018 for her contributions to the book “Firsts”). Kim’s art has shown in numerous galleries and publications. She is passionate about helping teachers understand neurodiverse people. In September of 2020, (if Covid doesn’t delay things), Kim has poetry being published through a Yale publication and a feature story in Kaleidoscope (international literary journal of disability and fine arts). Art has saved Kim throughout her life, from disappearing and from feeling invisible.
You are a superhero at recognizing the humanity in the human. This was a heart wrenching and beautiful read. Thank you for writing this. When I read your words I feel more human and less alone. Also, your art is stunning! Love the complexity!
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