For a man who can’t talk – at least according to the arbitrary rules of the able-bodied – Paul Marshall makes his points with rare eloquence.
Cerebral palsy may have compromised his movements and his utterances, but it has given him a common cause with the thousands of Canadians whose verbalizing has been affected by neuromuscular disorders or traumatic brain injuries.
“You’ve got to keep going,” declares the disembodied electronic voice that emerges from his speech-generating device after a series of clicks – the word-prediction properties of his technology counteracting the hesitancy of his fingertips, his eyes adding humanity to the computer’s formal phrasing.
The Hamilton resident has made it his mission to speak for people like him who’ve had trouble connecting with a world that sees only flailing limbs and hears only tangled grunts and groans. He calls the rest of us TABs – the temporarily able-bodied – because he wants us to see infirmity as the body’s destiny.
“We are all just a moment away from having our lives changed – to having a life-long disability,” he says. Dark humour is just one of the techniques he uses to prevent an indifferent world from ignoring him.
But within his own community of disability, it’s his message of resilience that resonates. At the Breaking the Ice conference held in Toronto last week, a motivational gathering for people who rely on what’s known as augmentative and alternative communication (AAC), the shared topics of slow conversation included such basics as how to communicate in a hospital, the challenges of making friends, what to do when people think you’re not too smart, and how to handle those painful moments when your communication device suddenly dies.
Which is what happened to Tien Hoang, a Vietnamese-born Torontonian with a form of cerebral palsy that affects most of his upper body, just as he was about to tell us why society gets people like him so wrong.
Mr. Tien is a renowned chatterbox and mentor in the AAC community. He communicates on a foot-level keyboard by touch-typing with his toes – wearing socks, no less. At a 90-minute town-hall forum – where 50 participants communicated with electronic devices; spoke via assistants who interpreted their gestures, blinks and verbalizing; or simply reacted with spontaneous expressions of affirmation and delight – Mr. Tien offered his solutions to the problem of feeling completely left out.
“Show people your sense of humour,” said the voice that channelled his thoughts. “Be patient. Tell people you are there and not invisible.”
But later on, when his much-used device ran out of power, his own advice became much harder to follow. Of course, Mr. Tien had a fallback strategy, one that depends much more on the kindness and intelligence of strangers.
First his interlocutor has to find his emergency notebook, based on yes-or-no questions and the physical responses they generate. The introduction, Mr. Tien makes clear, is required reading: “My name is Tien. I need some help. I have difficulty speaking but I understand everything you’re saying.”
Then the handbook, with a foldout alphabet page for letter-by-letter dialogue, has to be put to use. This requires effort and imagination for an outsider and no shortage of dexterity on Mr. Tien’s part, since he has to point to the relevant section with a toe at eye-level.
Fortunately, his computer springs back to life. He pushes a button and plays a statement he’d composed the night before about the reluctance of people “to look beyond our physical images to see the beauty and intelligence of our true selves.” Stereotypical judgments about people like him aren’t just hurtful, he notes: Cutbacks in assisted housing, educational resources and social services all become easier when a person’s intelligence and dignity are denied or overlooked.
This is not a community with much political clout to effect change. “They know they need to raise public awareness, change expectations and advocate for themselves,” said Nora Rothschild, a speech pathologist who helped organize the conference. “But this is a small, marginalized group that has a hard time communicating – it’s hard enough for a group that can walk and talk to get access to government.”
Fortunately, there are other ways of achieving solidarity at Breaking the Ice, beginning with humour. As eloquent as Paul can be in his motivational speaking – he has cajoled tough-talking street kids into playing chess and once brought a skeptical crowd in Peru to tears by composing a message on his alphabet board that revealed his hidden capacity – his lengthy welcoming remarks tested the patience of the town-hall audience in their wheelchairs.
The first response, once he’d finished, came from five-year-old Joseph Spahn-Vieira, who’d previously delighted a crowd for whom hand-clapping doesn’t come easily by dancing to a song he’d composed (“I wrote it to get rich,” he bragged) on the theme of not having doubts.
“Okay, Paul,” came his slow, sarcastic words, one by one. “We get it.”
Talking among themselves, these “people who speak in different ways,” to use the preferred phrasing, eschewed feel-good formulas for more hard-won insights. One speaker at the town hall described an attention-getting strategy of acting rudely – being noticed was paramount, even if it meant getting into trouble.
Penny Kitchen, who communicates through an assistant by raising her eyes to select individual letters, offered an unusual method for meeting potential love interests: “Go unconscious,” she spelled out – a sly reference to the cute paramedics who’d helped her out that morning when she’d suddenly stopped breathing.
Marlowe Horn, who lost her ability to speak and walk in a car accident at the age of 11 and hopes to make movies with Julia Roberts someday, described the necessary duality of her family relationships: “Mostly my mom inspires me, and my dad pays the bills.”
Asked for a story of inspiration, Kerr Wattie recalled the time one Halloween when he dressed as a tiger and had a classmate program a roar onto his message device. When his little brother walked into the room, he set off a roar that was powerful enough to make his sibling jump – a celebration of self-affirmation through the power of teasing.
Kerr’s story was relayed by his mother and chief interpreter, Gail Fisher-Taylor. The process of composition was staggeringly complex, because Kerr expresses himself largely through blinks in answer to a series of yes/no questions and is prone to seizures. Born with cerebral palsy, he has low vision and works with a communication device that uses auditory cues – which makes it hard to rely on in a noisy room.
Technology is proving to be a great equalizer for the AAC community, whose intellectual abilities can no longer be kept hidden, particularly in the body-free zones of cyberspace. But that doesn’t mean that their cloak of social invisibility has suddenly been removed – technology, as even the wider world knows, doesn’t make other people more caring or patient or understanding.
“We can get taken in by technology,” Ms. Fisher-Taylor said. “But isolation remains the major issue in this community. For that reason, a lot of people actually prefer low-tech communication because it necessarily involves relationships. When you ask people here what they want most of all, the message is simple: Get to know me.”
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