Although Stephen Kuusisto was born functionally blind, it took him thirty five years to fully admit it. Planet of the Blind narrates his convoluted journey to that admission. It tells the story with memorable encounters, and with vivid images and metaphors that reflect Stephen’s adult role of poet and teacher of creative writing.

Born with ‘Blindness of Prematurity’ in the New Hampshire of 1955, Stephen Kuusisto could see light and colour but was, in legal terms, blind. He had strabismus, leaving him cross-eyed, and one eye darted around out of control (nystagmus). His mother, partly it would appear from guilt, would not acknowledge his difficulties, and his father too could not talk about it. (This was the USA before the Disabilities Act, before the attitudinal changes that came with the casualties of Vietnam.) Stephen was forced to behave as though he were sighted, running, cycling, exploring like a sighted child, and doing so so successfully that he assisted his parents’ denial. He appeared to see more than he actually could, relying on memory, hearing and pluck.

Primary school was the predictable scene of bullying and incomprehension. But one sympathetic teacher stayed behind to teach him to read, the page held close to his telescopic lenses. Reading fast or for any length of time was impossible, so for all his education he was a very slow reader. As he says, ‘Physical reading eludes me, and being read to is inefficient, even hopeless.. Being able to make out print for short bursts of time is not reading, it’s deciphering, by definition a “non-literary” experience. And while blindness keeps one at a remove from the world, words, our common stock, are real as the knuckles in soup.’ Stephen’s literary tastes focussed on poetry not prose, and he developed a fantastic memory.

The performance of dissembling and managing was hard work, stressful and lonely for the young Stephen. It was no surprise to read of his anxiety, periods of overeating and obesity, obsessive hair plucking, followed by teenage anorexia. And yet, even with friends he was unable to ask for help honestly, to admit his blindness. He reports pretending to see birds through a friend’s telescope. On a trip to Greece with his first girlfriend he describes a prolonged daydream in which he tells her that he is blind, and would like her help.

‘Bettina awakens.

It should be simple.

Begin with the lips. MMMMMMMMMMMM.

“I’m blind.”

Now the guh, guh sound, please.

G G G G G

“Give me your elbow, please. Guide me through the stones.” ‘

The daydream continues with a vision of Bettina leading him with care and concern. But Stephen is unable at this point to believe that he can be both blind and loved. ‘I make a poor choice and keep my mouth shut.’

The difficulties (and embarrassments) Stephen experienced at college, graduate school, and in the world of teaching are graphically explored. Only when he was faced with the greater terror of unemployment did he finally take the necessary steps to function in a sighted world, first learning how to use a collapsible white cane for the first time, and then training to work with a guide dog. But acknowledging his blindness was painful, even as it enabled assistance and aided function. When Barry from the Iowa Commission for the Blind visited Stephen to describe services, the first reaction was fear. Barry is ‘giving me a proper nudge. And like all proper nudges, it’s frightening. He’s directing me into the open, the cane is an invitation to be nude in public.’

In a later memoir Stephen Kuusisto has analysed the world of hearing for the blind person (Eavesdropping: A Life By Ear 2006), but this memoir is a treasure for its investigation into a child’s negotiation of disability within the context of societal expectations. In Stephen’s case those childhood attitudes took decades to deconstruct. Parental attitudes are critical for a child with any disability – for a contrasting positive set of attitudes see Tanni Grey-Thompson’s description of her parents in Seize The Day. The modern integration of children with disabilities into main-stream education means that Stephen’s experience is now unusual, but it will remain an important cautionary tale, and a vivid account of one person’s negotiation with his childhood insecurities.

Recommended reading for any relatives of a blind person.

Kuusisto, Stephen (1997) Planet of the Blind, London, Faber and Faber

Audiobook available at Audible, narrated by Brian Keeler, at: https://www.audible.co.uk/pd/Planet-of-the-Blind-Audiobook/B077KCWTZH

Stephen Kuusisto’s website is at: https://stephenkuusisto.com/

 

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