‘Oh, you have such a cool Ferrari,’ she said kindly to me. At the ISB’s atrium on that day though, her words floated towards me like a gentle, little taunt. I genuinely knew she meant to say something nice. Something inclusive. Something that should have been pleasant to me. Yet it did not feel so at all! I did not know how to react to her. Should I nod? Should I laugh? Should I acknowledge the absurdity of what she had said about my wheelchair? Yes, she had playfully called my wheelchair ‘A Ferrari’.
Listening
to her words, I smiled then, if anyone could call it that. My smile was more
like a reflex than an emotion. I propelled myself away quickly, far away from
her gaze, and went towards the nearest coffee machine. The classes at ISB were
relentless, yet it was the attention on my wheelchair that I needed a respite
from.
To be honest, I have never been proud of sitting on my wheelchair. Being on it has always felt like a judgement or punishment. An announcement to the world that I was ‘handicapped’. People inevitably notice the chair before me. They feel its arrival even before I can be at the table. And sitting on the chair, I become dependent. I become dependent on people’s hands, their generosity, their silent concessions to push me through my limitations. A nudge here, a lift there, the entire duration of my life’s movements now owed to others’ kindness. Is it not weakness in its purest form? Is it not being a burden? Such thoughts circle within me. They consume me. And such thoughts do not stop there!
1. ‘In accepting and using a wheelchair, have I
abandoned the struggle to be normal?’
2. ‘Will I never again know the taste
of absolute independence?’
3. ‘Is this the moment where I cease
to be a person and become merely a condition or a luggage?’
4. ‘Are all life’s experiences –
whether sports, movies, the simple joy of walking – now forever closed or
largely attention drawing?’
5. ‘Am I destined to always be an anomaly, the one who must be considered separately for each occasion?’
6. ‘Am I an inconvenience to every
event?’
7. ‘Are my friends tolerating me
rather than enjoying me?’
8. ‘Do they help me out of kindness,
or is their kindness a performance for others?’
9. ‘How much humiliation is left for me to endure? How much gratitude must I constantly be feeling to people for helping me out on a condition I did not choose to be born with?’
These questions chase me for answers. They feed on my mind like parasites. And in that feeding, they also refuse to ever be satisfied or silenced.
Now, you must also know that there was a phase in my own life. A phase in which I had actually walked. Not far, but far enough. Slowly, I needed to rely on one crutch. Then two of them, and as my medical condition deteriorated further, I was placed in that scary wheelchair. I became like an object finally. Like a luggage to be moved around. Like a fragile FedEx courier. Even writing about it feels pathetic, as if I am begging for pity. Pity expected by a stray dog for that little scrap thrown to it by those noble.
And yet, why do I feel that miserable? How did it even come to such emotions? How can a mere chair and two wheels reduce me to this? Is it not absurd that an act as natural as sitting, while others stand and walk, should make me or any person with disability feel so unnatural? That the slightest assistance from another person should send insecurities through my fragile sense of self-worth? What am I for feeling such emotions? Am I too proud to take help, or merely weak to let others impose it on me? Am I sensitive enough to be grateful, or simply vain to show gratitude on a help I did not choose to want? Such thoughts never stop. They pile upon each other. They choke me. And sometimes, when I move to sit on a wheelchair, I almost feel pukish and look down in shame. I look away, at the floor, at nothing, at anything that is not the reflection of my own thoughts. I sink into myself, into my shame. The only escape is music sometimes, but even music cannot make me forget what I am.
And then, recently, I had to speak to a Mother on this. I listened to her hesitation. Her unwillingness to place her child in a wheelchair. I could not offer her words of comfort at all. How could I tell her that this chair would not define him, when it had totally devoured my sense of self-worth? How could I speak of freedom when I had only known captivity while sitting in it? How could I encourage her when I myself feel discouraged and wronged? So, I said nothing. I remained silent. I remained still. Until silence and stillness became unbearable.
Listening to that mother, the dam around my helpless emotions gave way once more. I broke again. On that night, I drowned, soaked in shame, and felt suffocated. I searched desperately. I searched for something, in fact anything at all, to hold onto and find encouraging. I closed my eyes and reflected for anything positive at all about my life because of the wheelchair. And, I let the past wash over me and images emerge within me.
That ugly chair. The two large, worn-out wheels. The handles that confined me to an 22-inch wide seat. The backrest felt as a restriction to my freedom rather than a support. These visions tortured me. And I forced myself to see more. Think more. Look beyond them. To reach further into the horrible corners of memory.
A
faint picture emerged then again. Of a man, who cleared the snowed paths to my
university at Wisconsin just so that my wheelchair could move to & fro. Of
two people lifting me on a wheelchair on a ship bound for Antarctica. Of
another person, named Shiv at ISB, who built an entire ramp for my wheelchair
to let me experience a normal graduation moment. Of a girl named Mugdha,
standing defiantly in a temple. She challenged me with her words: "Sai, Do
you think a girl is too weak to lift you and your wheelchair?" Of four
companions sweating, grunting, yet laughing as they carried me on my wheelies
towards the Goan beach waves. Of six friends who took turns dragging my chair
toward the ‘Grand Canyon’ of Telangana. Their breath was heavy but their desire
to give me a happy view overpowering. Of two strangers, who screamed ‘Har Har
Mahadev’ as they dragged me on my wheelchair through a torrid sea of people at
the Kumbh Mela. Of a gentle soul, who placed her feet between my wheelchair and
the unforgiving metal ridge behind the elevator, just to ensure my feet never
bore the brunt of a sudden jolt. Of friends who, without a word, always parked
the car in reverse, closest to the door, so I could move out on my chair with
ease. Of a bestie, who twirled with me, to ‘Khwaja Mere Khwaja’. Of another,
who made me dance and silently transition from ‘Ayyo Pavam’ karma to a cool
‘Hayyoda’ reel. Of my father, who constantly wiped away the dust on my
wheelchair, as if shielding me from the world’s rough edges. And eventually of
my mother, who, finally felt a tinge of peace that I might just manage life.
Just manage. Even if not on my own, perhaps by allowing others to reach me
through that wretched chair.
I searched for more shame because of me on a wheelchair but only found hands of help. Hands that lifted me, hands that carried me, hands that refused to let me be alone, and hands that let my heart feel lighter even as it sank in its own, needless, and destined heaviness.
I wanted to hold that mother’s hand too. I wanted to let her know, ‘Your son’s shame will be born the moment he is placed in that wheelchair. It will feel like a defeat. A humiliation. The wounds of being constrained will ache him every day. They will pain him, and they will pain you too. And with every inch of freedom, a sacrifice of self-respect will be demanded. A momentary hate, minutes of embarrassment will rise within him too. For the help taken, for the help needed, for the help snatched from the world. As a matter of fact, if people were music, he would forever feel like a broken song, endlessly incomplete. And if people were cars, he would almost feel like a dysfunctional machine, towed back, never meant to move on its own. But tell me, dear, is a Ferrari that is towed any less a Ferrari? And does the beauty of the world change when seen from inside a car that is towed? Will it be any lesser? Is it possible at all that a broken heart in a broken machine can still find solace in the helping hands of those around? And if that is not possible, can a mother’s love, not be of any comfort to him to even try? Just to nudge those low emotions he may feel even as his friends nudge him to experience the world? Must our hope be so strong that even true kindness from others not redeem us with a chance to come alive in whatever little ways possible? Must the simple act of sitting on a chair become so complicated to our emotions that even an all-giving, all-caring mother sees it as a defeat to her son’s future. See it as proof that her son’s life will never be normal? Tell me, given a circumstance, are hands that help, even if from others, not greater than feet that move? Are hands that lift not better than hopes that restrict?’
I wanted to raise these questions. Yet, I would never ask her. Because I failed on that day. The day when the ISB girl said, ‘Oh, you have such a cool Ferrari.’ I should not have run to the coffee machine then. I should have said something. Anything. Instead, I fled.
I should have rather smiled that day. I should have laughed truly, and I should have embraced her words, thrown my head back and said, ‘Yes, it is a Ferrari. Would you like a test drive? :D’. But I did not say those words. I only left foolishly and absurdly, as if escape were possible. As if, in rolling away from her, my self-worth and a sense of security will comfortably be placed on that chair forever.
I was wrong then. I feel wrong each day. I can only hope at least one other person learns this from me: 'Remember dear, living with a disability means mastering the delicate art of reliance upon others while protecting your own sense of dignity and self-worth. No one comes with a manual on how to do it right. Yet, no life, let alone a person with disability’s, is meant to be lived, survived, and experienced alone. So what, if someone has to constantly push you to get you around? Who even truly cares about you being a forever travel burden? No one thinks of you as much as you do. Just take the help. Pay it back through talents you are gifted with. And if no talents exist at all, still take the help. Experience the shades humanity showers you with. That alone is worth a whole life.. ! And to all those mothers of a young child with disability, I will not dare to advise. Ever. You are your superhero's sidekick. You know best whether to let him stay still or challenge him to walk. My story reveals that when you let him roll, he will also fly from 14000 feet, sail into distant continents, and twirl around in a dance with friends. And if my life makes you think too, all my negative thoughts are worth the pain I felt'
Yours with love, Sai