Stephen Hawking's other great legacy - to those affected by motor neurone disease
OPINION: In the eyes of the world, motor neurone disease (MND) was perhaps the most defining thing about Stephen Hawking, who has died aged 76.
His robotic voice, the default choice for early users of computer-assisted communication, became instantly recognisable as his fame as a scientist and author grew.
Theoretical physicists don't usually become recognisable figures in pop culture, no matter how genius. Our enduring fascination sprang from the contrast between Hawking's confined, contracted body and his expansive, l lightning-fast intellect.
No doubt Hawking will be remembered for his scientific legacy, but for people and families affected by MND, he left a different legacy.
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The cosmologist showed the world that those with great disability may also be in possession of bright, active and nimble minds.
He also showed people who received the shocking diagnosis of MND that - although he was much luckier in his longevity than most - it was possible to continue making a contribution to the world, even as your body shuts down.
Hawking urged others with MND to not let themselves be disabled in spirit as well as physically.
"[MND] taught me not to pity myself because others were worse off, and to get on with what I could still do," he said. "I'm happier now than before I developed the condition."
Although Hawking's wheelchair, synthesised speech and disabled body were what the world saw, Hawking himself said repeatedly that he tried to think about his condition as little as possible. If anything, it made him more determined and focused in his work, because he was constantly reminded of the finite amount of time he had to work in.
Those who have seen the energy-sapping effects of MND in a loved one will recognise the strength, courage and sheer bloody-mindedness it took to make the ongoing contributions to science that Hawking achieved.
Hawking lived with MND for an extraordinary 55 years. Eighty per cent of people with MND die within five years of their diagnosis. There are no clear reasons why Hawking lived so long with MND, though many neurologists have tried to gain understanding. MND is a group of very similar progressive neurological disorders that are incredibly variable in the way they affect individuals. Hawking is an outlier – an extreme one.
In living for 55 years after his diagnosis, Hawking survived longer with MND than anyone else known to have the condition.
In Hawking's extraordinary longevity with MND, he raised awareness about a disease that few had heard of previously. It is a measure of his ongoing contribution that his death has come as a shock, even to those of us who work with people with MND every day.
For more information about MND, visit www.mnd.org.nz
Beth Watson is the president of Motor Neurone Disease Association of New Zealand.
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