This May, history was quietly made at Queen’s Park when the Ontario legislature passed a law marking a new era of accessibility for people with disabilities. The act will lead to new provincial standards in both the public and private sectors that might one day include lower counter heights at cash registers to accommodate wheelchairs and large print menus for the visually impaired. As advocates for the disabled embraced the new law I thought about Harley.
Harley Jacoubsen never lived to hear the promise of a world that would be easier for those whose daily lives can be an endless marathon of frustration. He died in October 2004 at the age of 35, spending his last nine years in a wheelchair. Robbed of speech during his last days, he blinked his eyes to communicate. His cast-iron will could not withstand the unforgiving assault of neurofibromatosis, a genetic disorder that caused tumours to grow on his spine and brain. When Harley passed away he took with him a vision of carving a full life with no room for half-measures.
At the service held in Harley’s honour he was described more than once as “the hardest working man in show business.” This was not the show business of glitter and superficial stars but the slog-and-grind of low-budget films. A graduate of Ryerson University, Harley went on to work on a variety of short films and music videos as a gaffer, harnessing the power of artificial lights to help create the right mood. He dove headfirst into the task at hand, and didn’t abide those who slowly waded in, taking two steps back for every one step forward. He didn’t pass judgment on those who didn’t share his philosophy; he simply chose to forge strong relationships with those who did.
As Harley poured his passion for moviemaking into a succession of projects, the disease first diagnosed in childhood turned corrosive. By the time I met Harley — we were next-door neighbours for several years and down-the-street neighbours after that — his body had already begun to betray his spirit. One symptom of neurofibromatosis is loss of balance. Unsteady on his feet, Harley took to using a cane. Canes gave way to a walker; the walker was eventually replaced by a wheelchair.
Despite the daily challenges, Harley discarded any notions that living with a disability meant living with limitations. He spent hours methodically preparing sumptuous meals for friends, friends who knew better than to offer a helping hand. Stubbornness was as much a part of Harley’s diet as health foods. More often than not, offers shriveled into affronts under the gaze of Harley’s watery, willful eyes. Once a week he could be seen dragging a garbage can with one hand, wheeling himself with the other in a painstaking but determined stop-and-go journey from the house to the curb. When heavy snow carpeted the walkway leading to his door, Harley transformed into a two-wheeled snowplow, pushing a shovel forward, pushing aside all preconceived notions about capabilities. Self-pity, if it ever did surface, had long died in the shadows of Harley’s genuine curiosity and compassion for others. Conversations with Harley flowed in one direction.
As the borders of his life started to shrink, Harley found new ways of channeling his creative drive. Unable to spend his days on a film set, he set up shop at home. His computer became a portal to a world without curbs or other barriers. Web design offered Harley opportunities to apply his strong sense of the visual, to orchestrate text and images into a cohesive whole. Amongst his legacies is a website where individuals with spinal cord injuries share first-hand experiences. When a community group to which I belong needed a website, I went knocking on Harley’s door. I was given a front-row seat and saw how the tools of his newfound trade — software and the Internet — put him on a level playing field with the able-bodied. Beyond his front door he was often consigned to the sidelines and reduced to the role of passive observer. Inside the cocoon of his home office, he could go pixel-by-pixel against anyone who played on the same turf.
I would watch Harley, hunched over his keyboard, slowly hitting each letter as if playing piano for the first time, each time. Hand on the mouse, his eyes on the monitor, Harley manipulated images as a carver shapes marble. The difference is that a sculptor in Harley’s condition would not be able to hold a chisel. Playing with images, on the other hand, requires skill and patience, of which Harley had both in spades. The end results were artfully designed web pages that left no hint of limitations, all craft and no cracks.
When we corresponded about the site via e-mail I was reminded of how disabilities dissolve on-line. The slurred speech that sometimes made it difficult to understand Harley evaporated on the screen. His humour and opinions were not handicapped by how they were expressed or perceived. The medium affects the message, and the “e” in e-mail soon stood for “equal”.
For as long as I had known him, Harley lived in the basement apartment of a family that came to consider him one of its own. Harley responded in kind, creating gifts that reflected the value he placed on friendship and hard work. He transformed a cover of NOW magazine, a Toronto alternative weekly, into a backdrop for an exuberant mother-and-daughter photo honouring women. When another daughter was leaving home and heading to university, Harley created his own version of Dr. Seuss’s Oh, the Places You’ll See, doctoring the images and writing new text, creating a book that, but for the binding, could have been plucked from a bookstore shelf.
And then there’s the short film Harley made that will never be seen at any film festival any time soon. More’s the pity, as Capture the Grimki is a sly, subversive and very funny work — part Chaplin, part Woody Allen — that lasts less than two minutes. Harley filmed a friend, known for his full-bodied hand gestures, waxing philosophic about an issue of the day. Harley removed all sound and created subtitles that gave the gestures and facial expressions new, and often hilarious, meaning.
Gestures and facial expressions: limited on both counts, Harley found a way to reveal himself. His was the mouse that roared. But then, last fall, Harley took a sudden turn for the worse. He went to hospital and spent the rest of his days in intensive care, his mind in full gear, his body unspooled. He was quickly reduced to communicating with his eyes as his mother pointed to the letters of the alphabet. Doctors told him he had locked-in syndrome: his body would continue to fail him, until, blind and immobile, his healthy mind would be trapped inside a shell of skin and bones. Harley opted to have his life support system removed. He was surrounded by family and close friends, one of whom was convinced she saw his spirit leave his body. A showman to the very end, Harley’s ashes were scattered in Sook, B.C, where he grew up.
Since then, I have stumbled across Harley’s e-mails and revisited his web designs. At those times I am reminded that, in the right hands — no matter now gnarled — a computer screen is a canvas. I think of how Harley would have considered the “act” in “Ontarians with Disabilities Act” a verb, and not a noun. I picture him in his basement apartment, weaving words and images, unseen from the street above.
The Globe and Mail, July 23, 2005