Thursday, April 07, 2011

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.

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