Reflections: How I Became a Human Being

Mark O’Brien fell victim to Polio at a very young age. Since then, his condition only kept worsening, despite his lingering childlike hopes. His spine curved, the muscles in his limbs atrophied, and his lungs deteriorated, making him dependent on an unwieldy iron lung (a respirator of sorts) to breathe. Mark was shuttled between hospitals and his home for the predominant part of his childhood and teenage years. But his burning ambition to be independent and to make a living on his own, drove him to pursue admission into University of California, Berkeley’s Undergraduate Disabled Students’ Program. After much struggle, he got in and successfully graduated as an English Major. Having a penchant for literature and writing since his early years, he converted his interest into his livelihood. He worked hard to establish himself as a freelance writer and journalist. More importantly, he toiled all his life to establish himself as a human-being - a person worthy of love, respect and regard. Mark’s memoir is much more than inspirational to me - it is a touching account of what Independence, acceptance, and respect in society means.

I am always interested in issues surrounding one’s identity - how identity is felt and worn by an individual, how this gets perceived by society, how society’s perception feeds back and tinges one’s awareness of their identity, and then the ways in which one chooses to project it. Mark’s words are full of these identity feedback loops, and the title of the memoir fittingly describes his angst. In an Utilitarian sense, a disabled body screams of “low-utility” in every segment of society - professional and personal. Mark’s battle, and that of several others, is to go against this stream of thought in a society that is Utilitarian at its core. It is shameful that people who can’t contribute to society in the same ways as able-bodied people, are indeed regarded a little less human, and are afforded less humane treatment. Starting from the ways in which one looks at such a person, to the conversations (if at all) they have with the person, they are made to feel so different as to not even think of belonging to the same class of species. Mark’s memoir is a plea to correct political policies that doom the lives of disabled people suffering such indignities to their identity, wasting away their lives and minds in institutions and hospitals. The US has come a long way with its Disability Act, but many other societies still live in the dark.

There are three other aspects of this memoir that really touched me (some of which I have already stressed before)

1. The misconception surrounding independence and incompetence
When physically challenged people talk of their desire to be independent, they are often misconstrued as being in denial, and not facing reality. True, the extent of independence and privacy that they can hope for is different from what an able-bodied person can experience. But by independence, they mean the right and freedom to express themselves, choose between options, decide for themselves, and control the directions of their life as much as they can. The unfortunate misconception that a crippled person faces is that of mental incompetence. People hardly want to ask permission, or provide choices to a person in a wheelchair, who projects the image of helplessness and physical incompetence. Our animalistic brain assumes that a physical challenge equals low brain power. To break such stereotypical molds, we have several highly accomplished scientists and artists who repeatedly assert that the physical state is no reflection of the agility of the mental state. It is a fatalistic approach to keep dictating the lives of those with a severe physical disability, using the insensitive argument that they anyway have far too few choices in life to contend with, and heaven forbid, they shouldn’t be hoping for more.

2. Bravery versus fearlessness
Mark’s memoir is extremely honest. He cringes when people call him brave, probably because the word discounts his struggles, fears, and frustrations, and seems to put him in an uncomfortable spotlight that emphasizes that he is not “normal”. But, I liked a definition of bravery that he eventually comes to accept. Bravery doesn’t mean fearlessness. Bravery is when you decide to do something, despite the fear it causes you. This applies to everybody and to most of our actions. We constantly fight against our fears, to rise above it, and accomplish that which we really want.

3. The Disability spectrum
Everyone is “disabled” to some extent, in some form or the other. No one is perfectly able-bodied or able-minded. But all of us crave for love and acceptance regardless of the condition of our body or mind - acceptance is vital in the basic hierarchy of human needs. It helps to connect with this primal need for acceptance when we consider people who are shunned due to their physical state.

I will end with one of Mark’s poems about his breathing through an iron lung:

Grasping through straws is easier;
You can see the straws.
“This most excellent canopy, the air, look you,”
Presses down upon me
At fifteen pounds per square inch,
A dense, heavy, blue-glowing ocean,
Supporting the weight of condors
That swim its churning currents.
All I get is a thin stream of it,
A finger’s width of the rope that ties me to life
As I labor like a stevedore to keep the connection.
Water wouldn’t be so circumspect;
Water would crash in like a drunken sailor,
But air is prissy and genteel,
Teasing me with its nearness and pervading intensity.
The vast, circumambient atmosphere
Allows me but ninety cubic centimeters
Of its billions of gallons and miles of sky.
I inhale it anyway,
Knowing that it will hurt
In the weary ends of my crumpled paper bag lungs.

It is remarkable that Mark kept breathing and living despite his numerous existential questions and frustrations, until his lungs finally gave in. Jessica Ju’s interesting documentary on Mark’s colorful life won an Oscar in 1997. It is heartening that Mark did eventually get recognized as an interesting human-being worthy of getting to know.

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: Design Meets Disability

This is one of the most enjoyable, out-of-the-box, unique books I’ve read for my academics. I couldn’t wait to share my thoughts on it, and yet, when the moment has arrived, I find myself at a loss for the right words and sentences to describe and do justice to this book! Anyone with a passing interest in design, engineering, interaction design, disability, art or even fashion would benefit from reading this book, or at least parts of it. It puts a completely different perspective into you, that you will start finding innovative approaches to intermingling disciplines that you thought should never ever be put together! I mean, engineering plus fashion?! Art plus disability?! Of course, the underlying thread here is that the reader should be able to empathize with (if not be impassioned about) helping to remove the stigma associated with the physically (and cognitively) challenged people in our society.

To start with, our notions of what constitutes as disability is very skewed. The World Health Organization has put forth that people cannot be categorically segmented into disabled and “abled”. Disability is a continuum like most variables and factors in our life. And almost all of us have varying levels of disability - in terms of our vision, hearing, and other bodily functions. We have our own medications and aids to resort to, our own difficulties and nagging complaints.

Put in such a light, it seems unfair that a person who has lost one limb, should be segregated from the rest with a stringent stamp of disability - right from the clothes they can wear, to the prosthesis they are given, with the attitude - “make the best use of what is given to you, and don’t expect more, for your condition cannot be ameliorated”. We don’t see that kind of culture prevailing in clinics and “shops” that give us a plethora of options to select the design, the color, the look and feel of the frames for our spectacles (now called as eye-wear), when wearing corrective lenses is one form of an augmentation similar to prostheses? I remember years before when wearing glasses to correct one’s vision was a stigma by itself!! Back in the day, the stigma was only further perpetuated through the glasses people had to wear. Glasses were only available in gargantuan, awkward square-shaped, thick black frames that hid half the face. The psychological scarring from this cannot be trivialized! Many women had to even compromise on who they could marry because of this stigma. Slowly, the infusion of a little bit of fashion, art and thoughtful design have resulted in sleeker frames, that complement people’s faces! Some people still choose to wear glasses over wearing contact-lenses. The point in case is that - people have options and have choices, respecting their preferences, and allowing them to express themselves. Eye-wear has become almost a fashion accessory. This has completely erased the stigma, the wearer’s lack of confidence, and the cultural and social issues surrounding it. It doesn’t seem ludicrous to aim for such a change in the culture of design of hearing aids, wheel-chairs, communication aids, speech-synthesizers, crutches and prosthesis, does it?

Medical and rehabilitation engineers often fail to factor in the cultural and social implications of giving people prostheses that are rigidly functional, but not aesthetically pleasing. Moreover, there is no choice in what they get. Engineers are prone to say - Why on earth should a prosthetic limb be aesthetic? Isn’t it a waste of time? Wrong. This dismissal that everything related to aesthetics, and look and feel is just too superfluous and cosmetic, is a very narrow perspective. It might help if we stretched our boundaries and considered aesthetics, design and fashion with a tolerant attitude. It’s not always shallow - our body is essential in defining our identity. What we wear and how we present ourselves, is a projection of our self-expression and identity. Besides, it is highly emotional. This thought might be derided by spiritualists and philosophers, but if you are a realist, you would realize the psychological necessities for being comfortable in your body and in what you choose to wear. In our perfectionist society, I agree that an obsession with the perfect body and looks, seeps into materialism and consumerism, and is definitely not healthy. But, there are limits to the austerity that we can advocate. People with physical challenges already face an immense psychological trauma of grappling with the changes in their life - if their challenges are exacerbated through “assisitive” augmentations that just widen the gulf between them and their social and cultural identities, it is extremely emotionally damaging. As one designer put it - if we can invest research and time into designing so many variants and flavors of toothpaste and toothbrushes to please a wide audience, shouldn’t we attempt to provide at least half as many choices in the design of assistive products that directly impact lives?

Graham Pullin powerfully makes the case for considering the social and cultural aspects of disability, rather than stereotyping and homogenizing an entire population’s “needs”. Designers and engineers must acknowledge that there is bound to be a diversity of needs and preferences. And the part of the book that I liked the best was Pullin’s suggestion to designers to look for commonality of needs across people. Regardless of whether one has hearing aids, wears glasses, or wears a prosthetic leg, there are bound to be some needs that overlap across the boundaries. Tap on these “resonant needs” to design products that are both accessible, aesthetic and functional to the majority of the population - so there is no label that Watch X is worn by the visually impaired versus Watch Y is worn by the hearing impaired etc... This is the sort of concept behind “Universal Design”, but Pullin takes it up by a notch through his examples that adopt a minimalistic and aesthetic approach, instead of trying to clutter the product with features and functionality  to accommodate a wide group of people. As Google and Apple have demonstrated - good design is simplicity personified in elegance and functionality. The design examples in the book are awe-inspiring (at least to someone from within the field!), and really broadens our thinking horizons.

Pullin encourages an inter-disciplinary approach towards designing products, technology and assistive devices for the physically and cognitively challenged. Engineers are rigorously trained to view everything as a problem that needs to be solved. The human elements are often lost in the solutions. Sometimes what is required is not a solution - but merely a different perspective, attuning oneself to a novel idea. Why not playfully explore solutions, or seek to redesign with the attitude of that of an eccentric fashion-designer or a furniture designer who think beyond norms to innovate a skirt or a chair? Put engineers, designers and people from fashion and art together in the same room - wouldn’t the outcomes be phenomenally creative, functional and aesthetic? Each discipline has something valuable to learn from the other and contribute to each others' way of thinking. While it might seem impossible to work together, the common cause should carry enough momentum to deliver sensitive, elegant and intelligent designs.

The book teems with inspirational design ideas that put a spin on one’s imagination and creativity. True to Pullin’s repeated assertion - his ideas really do make design for disability turn on its head. A brilliant read.

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.