The blind have so far resisted the protective cover of political correctness. The word "blind" has all manner of grim synonyms huddling malignly in the thesaurus, but it remains the term of choice for those who cannot see. Stephen Kuusisto is as qualified as anyone to explain why. He is fast becoming America's most - ahem - visible spokesman for the blind. His memoir, Planet of the Blind, is making waves there, and NBC is screening a documentary about him this month. He is also a poet and teacher of creative writing, with all the sensitivity to language that that implies.
"I find terms like visually impaired or sight-impaired" - and he stops to think about what he really dislikes about them - "take longer to say." I ask him to coin a positive euphemism, in the manner of "gay". "Can we come up with a new word for blind? 'Are you blind?' 'No I'm spritely. I'm a sprite.'"
Kuusisto has been spritely since soon after his premature birth in 1955. His twin survived only one day. The author was placed in an over-oxygenated incubator where he developed a full gamut of visual disabilities: "retinopathy of prematurity", nystagmus and strabismus, or scarred retinas, uncontrollably darting and crossed eyes."
For the first 30 years of his life he could make out large letters if he held a page to his nose, but then he developed inoperable cataracts. He also had glaucoma, and after surgical intervention "it has left me with permanent holes in the irises of my eyes that flare up with wild purples and scarlet flashes and so forth. It really is quite psychedelic".
Kuusisto occasionally sounds as if he is making light of blindness. He has a more missionary purpose to shed light on it. Planet of the Blind, for all its well made writerly conceits, is a excellent guidebook: I'd go so far as to describe it as an eye-opener.
For all the legal and technological advances that have improved the life of the blind, Kuusisto says that basic prejudices are still intact, and in some odd places. He cites a dismaying cartoon that appeared last year in The New Yorker. "It depicted a blind man crawling up the sidewalk, arms outstretched, flailing and groping, and then up ahead the guide dog had clearly escaped the man and it was laughing. I have a very good sense of humour but, good God, that cartoon depicts the blind man as a proto- Darwinian creature having crawled up on land. This is just awful! In the end I think it is that kind of cultural assumption that holds back the blind from full inclusion. One of my goals is to demystify and hopefully defuse the fear surrounding blindness. It's difficult and it's steep and there are moments that are challenging. But it's not a profound misfortune."
Kuusisto has come over with his small, dark fiancee Connie but, thanks to the British fear of rabies, without his large blonde guide dog Corkie. He is wearing purple sunglasses, from behind which he can make out that the room has "a sort of pink aura of some kind". He attributes his cheerfulness to the ascendancy of his mother's Irish roots over his father's Finnish ones, but also to the fact that he has finally owned up to his blindness.
For his first three decades Kuusisto lived in denial of his disability. In this he had considerable assistance from his parents. "My mother was in horror of blindness anyway. She had her own complex denial going. Blindness was so popularly considered to be a kind of invalidism."
Their son was put through the regular school system, rather than sent to a specialist institute, and consequently acquired no professional orientation skills or literacy in Braille. "My parents were faced with a very very difficult choice in my childhood. Blind children were not often integrated into mainstream culture. They made a forceful choice to have me in the mainstream culture and I think that's had tremendous benefits."
Kuusisto developed a fiction, with his face pressed against the page, that he merely couldn't see very well. He would ride bicycles, go jogging, even drive his father's motorboat. For his parents and his schoolfriends, the book's frankness came a shock. "I think they went along with the fiction. I would downplay it by saying 'I don't see well'. I wouldn't say, 'You have no idea how little I can see'. Many have now read the book and said, 'That's amazing'."
In his teens he spent a year flirting with death when his weight dropped to under 100 pounds. He attributes his anorexia to "a condition of adolescence where the young person feels a deep sense of hopelessness. If everything has been bleak up until then, if it's impossible to imagine that the next stage of life is going to be any better, it's a profound psychological resistance to going on to the next stage".
When he started eating again, Kuusisto managed to lead relatively unfettered young adulthood. A Fulbright scholarship took him back to Finland for a year. He went on foreign trips with other students. He lost his virginity in far less bitter and disappointing circumstances than most of us are forced to endure. He was a teacher of creative writing and enjoyed it hugely until he was "downsized". For three years he became one of the 70 per cent of blind people who do not have a job.
It was in this period that he started to confront the absurdity of disavowing his blindness. First he took up his white cane (which for years he seems to have regarded as a mark of Cain), then he applied for a guide dog. The improvement to his life has been immeasurable. "To feel that much security in travel - that changes your gestalt. It opens you up. It makes you more flexible, more upright. I think that I'm a more genial and amused creature with the dog. Movement is more graceful, more informed."
Kuusisto's Damascene conversion has replaced denial with zealotry. When an aged professor once told him to get off the course if he couldn't read the books, Kuusisto hired a local attorney "who put the screws to the university pretty quickly". As well as using his skills in communication in the job he now holds at the New York guide-dog school where he met Corkie, he has also carved out a public role characterised by his own brand of mild militancy. "I was denied a cab ride in New York City two years ago by a taxi driver who didn't want me in the car because of the dog. Since then, I've been working with the mayor of New York, Rudolph Giuliani, and a special commission he's appointed to raise the fines on cab drivers who do these sorts of things to disabled people. It used to be $100. Now it's $1000. And if it happens a second time their license is revoked. I suppose the axiom is don't get mad, get even."
'Planet of the Blind' is published by Faber & Faber at pounds 9.99. In a special offer to 'Independent' readers, copies can be ordered at pounds 8.99 (inc p & p). Phone 01279 417134, quoting this offer.Reuse content