Jun 25

Planet of the Blind

Posted by Soliloquy in Adults with disabilities | Vision Impaired

Stephen Kuusisto, an American, has been almost completely blind since a post-natal operation severely damaged his retinas. In this autobiography he tells of the years of lonely childhood spent behind bottle-lens glasses, the struggle through high school and college, and first love and sex. Derided by classmates, his parents pretending that nothing was wrong, he stumbled through life enraged and mortified. Only when a five-year-old labrador entered his life did he be… More >>

Planet of the Blind

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  • When people ask me if it isn’t “painful” to be deaf, I often surprise them by saying: “not nearly as painful as being hard-of-hearing.” Back in those days, you see, I was still trying hard to fit into a hearing world. I was still coming to terms with what hearing loss meant to me, and dreading what it might mean in the future. All in all, it is far easier for me now, totally deaf that I am, than it ever was to be hard-of-hearing when my constant companions were denial and pain.

    I was reminded of all of this recently when I read Stephen Kuusisto’s book “Planet of the Blind; a Memoir” for here is someone who knows well what it means to live hand-in-hand with those same companions.

    Mr Kuusisto began his odyssey through the land of denial as a result of a premature birth, which resulted in almost total blindness. The seeds of pain took root soon afterwards, as his parents struggled to find their way through unanticipated and, to them, rather horrifying territory. In the end, like many parents faced with such a situation, they chose the “you can do anything you want to” path.

    Now, this path, properly followed, is not bad in and of itself. Certainly we have all heard of people who have learned to manage despite harrowing disabilities. Just the other day, for example, I saw on TV a feature on a woman who is doing just fine without arms, compensating through the use of her legs and feet. “My parents” she told the audience, “always told me there was nothing I could not do.” At the end of a film clip, in which she demonstrated her abilities, the audience stood up and gave her a standing ovation, and everyone, I am sure, went home with happy tears in their eyes.

    The danger in this mind set is that, human that we are, we tend to look for happy endings and forget how important it is in such situations that the word “compensate” be factored into the equation. In other words, there has to be some way that the disabled person can get around the problems presented by the disability with some degree of ease and success. The lady on TV, for example, was able to use her legs and feet for almost all daily tasks.

    Mr Kuusisto’s parents took the same tactic, hoping I am sure to instill both ability and self confidence into their son. Alas, there were no figurative or metaphorical legs and feet to support the author as he was thrown willy-nilly into normal life situations with no means of gaining mastery over his daily problems. He was not, for example, taught braille, or given mobility training. Nor, when it came time for school, despite the fact that he could see letters only one at a time by holding a book inches from his one minimally functioning eye, were any special concessions made to his blindness. Instead, as in all other endeavors, he was left to manage as best he could.

    As Mr Kuusiston himself puts it, in summarizing his first thirty odd years:

    … raised to know I was blind but taught to disavow it, I grew bent over like the dry tinder grass. I couldn’t stand up proudly, nor could I retreat. I reflected my mother’s complex bravery and denial and marched everywhere at dizzying speeds without a cane. Still, I remained ashamed of my blind self, that blackened dolmen. The very words blind and blindness were scarcely spoken around me…(and) my mother could avoid the word, relegating it to the province of cancer.

    Fortunately Mr Kuusisto was extraordinarily bright. He managed, somehow he managed; learning to ride, for example, a two wheeler, albeit in stark terror as he peddled. Graduating from college, he spent a year in Finland in totally unfamiliar surroundings, a situation akin to suddenly, because of the language barrier, becoming both blind and deaf. But still, though drowning in fear and anxiety at virtually every step, he marched on pretending to live as an equal citizen in a sighted world.

    Eventfully, of course, he could manage no longer. Both his will and his strength gave out. He began to sink, and ended up virtually destitute, holed up in a small room at the mercy of the beasts that emerge when you deny not only who you are, but what you are. Then, and only then, did he allow reality entrance to his life and concede, after nearing being killed by a truck:

    “I need help walking. I’ve needed help all my life. It’s that simple.”

    It ought to be- that simple that is. For most of us, or at least for me, it was not. What is it in us that allows us to welcome such pain in our lives in lieu of truth? Is being like everyone else really so important that we are willing to deny ourselves, almost literally destroy ourselves, as we pay worship to it? Apparently so, for how well, and with what pain I remember pretending to have heard what was whispered to me in the dark of night in childhood. How well I remember those birthday parties which featured the old game of “telephone.” Always outrageously wrong, I would sit there nodding my head, or shaking it with wonder at how distorted the message had become as it passed from person to person. Never would I have dared to admit that I could not understand, anymore than I could admit that I had not the foggiest idea of plot or dialogue when at the movies. Pretending. Always pretending; covered with sweat, consumed by anxiety, fearful of the future. Fearful, most of all of discovery.

    I was lucky. I did not hit bottom nearly as deeply or as hard as Mr Kuusisto did. But I well remember the pain and fear with which I greeted each new day. I remember shaking in terror, hiding in bathrooms to avoid meetings at work, and going miles out of my way to deliver messages in person rather than attempt use of the telephone.

    Life is easier now of course, We have the American Disabilities Act,, TTYs and Closed Captioning, to name just a few for the deaf, but still, all the technological advances in the world are useless if we refuse to acknowledge and name our disability,and, most importantly, reach out for help when we need it. Denial, as the old saying goes, is way more than the name of a river, and no one has shown this more clearly than Mr Kuusisto in this honest, beautiful and almost poetic, book; a cautionary tale, which should be required reading not only for disabled people, but for parents who suddenly find themselves in charge of guiding their children through the frightening and unfamiliar landscape of disability.

  • As the mother of two legally blind children, Planet of the Blind is what I have searched for since their birth. The book is both beautifully and painfully written. I feel empowered and enlightened. Not a day goes by that I don’t wonder what the world is like for them. As a result of reading Stephen’s story I feel I have a better understanding. Thank you Stephen for sharing your story.

  • Kuusisto powerful prose reminds one of the awesome power of the imagination in this touching memoir of struggle and finally acceptance. Not a typical movie of the week redemption story, but a hard fought tale of the struggles of the author and his view of himself. We too are then reminded of our own struggle with our own view of ourselves.

    We travel with the author as he denies his “limitations” and goes through the world as if he can see. Comical in concept, touching in delivery. Its strength reminds us that we should be grateful, and accept the limitations of others and ourselves with grace. Great description of the perils such as curbs, dogs and low hanging branches, what we ignore in our daily lives, reminds us of how much we miss around us.

    The book also suggests great issues of the demand for perfection in our society, and how we deal with it, or our lack of it. A thoroughly depressing section on his experiences in Finland, serves to those with all our senses how lucky we truly are.

    This book does what good writing is suppose to do, expand our repetoire of experiences.

  • As a legally blind person, who had totally blind parents, this vividly written book went a long way in helping me come to terms with my own situation. Like Stephen, for years I was in denial about my own limited vision and tried, successfully for a time, to “pass” as fully sighted. This is no longer possible and I have to face my own limitations head on, as Stephen finally does.

    I recommend this book to anyone who would like to understand what living on the “Planet of the Blind” is really like, and for anyone who enjoys beautiful writing.

  • I read Stephen’s book late into the night and then got up and read more in the morning. The book not only brought me new understanding of the world of blindness, it spoke intimately of the journey of self-acceptance. Stephen’s story is threaded through with grace, and his language is musical. A deeply spiritual memoir; you will finish it changed.



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