Reflections: The Diving Bell And The Butterfly

In December 1995, due to a very rare and unfortunate accident, Jean-Dominique Bauby was thrown into a complete body paralysis. His brain stem, which acts as a conduit between the brain and the spinal chord, severed, resulting in “locked-in-syndrome”. By a stroke of ironical “luck”, Bauby retained control of his left eye and lid. Through blinks of his left-eye Bauby managed to communicate with his friends, family and caregivers. He could externalize his thoughts through painstaking blinks to form individual alphabets, words, sentences and paragraphs. And thus came about his immensely moving memoir. Almost like a tragic, poetic ending, he died after two days of the memoir’s release.

Bauby was the chief editor of the popular French magazine, Elle. He led a glamorous and busy life in the romantic city of Paris. A man who was used to constant hubbub and acclaim for his work was suddenly pushed down fate’s tricky stairs. On regaining consciousness from his dangerously long coma, he had to come to terms with so many challenges and blows to his ego and dignity. But he didn’t lose much time wallowing in his angst and sorrow. He decided to keep himself busy, by not letting his thoughts rust. His mind tuned itself to be even more alert and imaginative and it flew through the world like a dazzling butterfly. He craved to interact with people and communicate his thoughts, and resented the common misconception of some of his acquaintances, that just because his body was reduced to a near “vegetative” state, he had become intellectually incompetent. This book is one of his attempts to dispel such a thoughtless conclusion about people with physical disabilities.

His memoir is a collection of his thoughts that flit from varied time periods and scenarios in his life, like a butterfly hopping from one flower to another. But he mainly focuses on his journey in his paralytic state. I honestly cannot imagine how sharp one’s mind has to be to construct exquisitely beautiful sentences and paragraphs conveying such poignant thoughts and emotions, without the luxury of a word processor, or even a piece of paper to edit and rearrange words. And while such complex processing was taking place in his mind, he had to simultaneously select each alphabet through blinks of his eye. Such perseverance and drive is incredibly inspiring. Tragedy and pain seem to bring out the best in some people. 

Books like these reiterate the significance of being able to express ourselves. Locked in his useless body was a brilliant mind and Bauby's sense of self, both of which came bursting forth through a tiny outlet permitted by his body. It's impossible not to be touched by this book. And it's a pity I can't read his book in French.

Reflections: I Raise My Eyes To Say Yes

Ruth Sienkiewicz-Mercer was diagnosed with Cerebral Palsy when she was a toddler. Since that tender age, all she could muster with her body consisted of three things - she could raise her eyes to say "yes", frown and crumple her lips to say "no", and do both the actions in quick succession to indicate "maybe". As Ruth's family grew and finances became tight, her parents were confronted with the tough choice of sending her away to a residential school. However, when her parents entered her into a State Infirmary for the physically and mentally challenged, little did they know how much their ignorance and stoicism resulted in the sacrifice of Ruth's emotional growth and physical development. Ruth was unfairly categorized as being mentally retarded because of her extremely limited expression of intelligence and comprehension. It is ridiculous and highly atrocious that she was made to go through IQ tests, when she was given no tool or support to communicate her answers. She was shuttled between wards housing mentally unstable patients, where she was made to lie on her back all day long, was stuffed with unpalatable food through a watering can, and was left to stare at nothingness all day long, every day, for years together. In short, she was treated like a vegetable which was kept alive and breathing. If there is any other form of cruel punishment to surpass solitary confinement, this would be it. A young girl with an intelligent and curious mind, shackled in a useless body, torn away from friends and family, made to stare at the same things and hear the same disturbing noises, would have lost her sanity. But not Ruth. She braved the ordeal for thirteen years, with her sanity intact, her thoughts lucid, her ambitions high. With the help of many empathetic friends, she eventually moved out of the Infirmary and started a new life in her own apartment. She also undertook the project of putting her story and her thoughts into words. Through communication devices and sophisticated alphabet boards, her thoughts were painstakingly conveyed, and her story has been meticulously written as a book, by Steven Kaplan.

Ruth's story is not just the run of the mill heart-breaking, inspirational memoir. It is a person's plea for recognition as a human being. The book steers away from self-pity, and it doesn't weigh down with emotional intensity. It is a realistic, honest narration of a severely disabled woman with an incredibly robust mind, and an even greater will power. I can't even begin to imagine how anyone could preserve their sanity when subjected to the circumstances that Ruth went through. Not only did this woman, who was branded as useless and mentally retarded, brave the tragic circumstances with a healthy spirit, she also developed a wonderful personality through the whole experience! She never ever gave up trying to assert herself as a person who deserved basic respect. She was astute and intelligent to adapt what little gestures and vocal abilities she had to communicate and let her thoughts be known. When she was introduced to technology which could expand her vocabulary, she worked herself to the bone to somehow use words other than "yes", "no" and "maybe" to express her self. This whole book yet again painfully explicates how priceless words are to establish ourselves as normal, competent individuals. Communication and expression are fundamental to human beings, for we are social animals.

Ruth was "helped" to survive, if survival means just staying alive. But she rebelled for something even more basic - dignity and acceptance. Her life serves as a lesson for bettering the treatment of the physically challenged.

It is a sad realization that even those who aren't limited by any physical challenges face a jungle everyday, that it seems almost unrealistic to expect constant empathy and perfect consideration towards those who unfortunately can't contribute much to society. Ruth's hurt and frustration can be put off as denial to face reality. But with the advent of technology, physical limitations can be erased, skills can be virtually augmented, and the horizon of opportunities through which people like Ruth can contribute to society can be widened. Yet, it still requires empathy, patience and a consideration of these people as fellow human beings to be able to execute these ideals. Ruth's story will demand all of these.

Reflections: Meaning Of A Disability

Until now, I've never felt any urge to write about books that I read  for my academic interests. With ample discussions, term papers and academic book reviews mandated of such books, there's been scarcely any energy or motivation to write about them here. But yesterday, I finished reading two exceptional books that I'm quite eager to share and write about; a rare emotion that accompanies academic prescription.

The first book is by Dr. Robillard, a sociology professor from University of Hawaii. In the mid 1980s, Dr. Robillard was diagnosed with ALS, a motor neuron disease that leads to slow degeneration of motor neurons, muscle atrophy and paralysis of the whole body. Dr. Stephen Hawking is another well-acclaimed professor and scientist afflicted with ALS. The prognosis is usually death within a few years of the onset of the disease. However, Dr. Robillard lives after more than 20 years of being diagnosed with ALS, and continues to teach at the University of Hawaii. He strives to lead a normal life, and his strong-willed spirit keeps him extremely productive and creative. This book is an autobiographical account of his life with ALS, and what it truly means to be physically disabled.

More than the debilitating effects of paralysis, those with ALS acutely miss their ability to speak and communicate. This would be especially true for someone as accomplished, intelligent and articulate as Dr. Robillard. The focus of this book has been to bring to light the significance of simple talk and face-face communication in our social structure, and its intricacy in defining us as individuals who are socially competent and intelligent. Using his own experiences, Dr. Robillard critically analyzes the shift in social structure when a person is struck with a disability to talk and be heard. The method of analysis he has employed is called ethnomethodology.

Our ability to carry on a conversation is often taken for granted. It is a mundane routine. But it's fascinating to learn about the the extent of skill and subtlety involved in simple social interaction. Conversations are highly bound by temporal parameters. A slight miss in the rhythm, an averted gaze, a shift in body posture, an incorrect intonation, a careless gesture, and meaning is lost. Thoughts remain stagnant, and are never transmitted. The person is never understood for what they are and what they want to share. It goes to show how much our identity is tied with these social building blocks. Shatter the blocks, and our individuality as a person in society drastically gets altered. Our personality is shaped through our expressions. Without the ability to express, especially spontaneous expression of thoughts through words, our personality is trapped within our body. This was a very interesting take-away from the book, although it might sound very intuitive. Dr. Robillard's experiences go beyond just common-sense perception.

In addition, the book emphasizes something very fundamental - that the body by itself is a very crucial component of the social comprehension of how competent a person is. It is sad that most of us fall into the notion that a dysfunctional body and dependence due to it, is a sign of incompetence. An active, alert mind, imprisoned inside that body is often ignored. Respect to an individual diminishes with the regression of the body's functionality. Basic dignity is overlooked, and empathy is misdirected through patronizing talk, actions and behavior. Dr. Robillard's accounts have given me a very realistic understanding of the attitudes, angst and expectations of a person with a physical disability. And for primarily this reason, I would recommend this book to those who want to learn how to understand and treat people with physical challenges.

The book is well-written, precise, analytical and grounded in empiricism. Some of his words carry the inevitable marks of hurt and frustration. Dr. Robillard composed the entire book by lip-signing (a method of communication he devised with the help of his wife and students), every word to his students, who typed the manuscript, while his daughter helped with editing. I want to say that I'm inspired by his perseverance, his ambition, motivation and his strength of will, but he resents such statements. To say so is putting him outside the circle of normalcy. He is a normal man, a thoughtful and analytical professor, who is a prolific writer of  remarkable books and papers, teaches courses, and conducts research, befitting his intelligence and personality. And that inspires me.