Swimming upstream: Keeping my emotional self intact through years of pain and humiliation

A picture of Abha as a child. She is wearing a pink and white sweater and is seated against striped curtains.

Disability isn’t a collection of symptoms – it is a complex relationship between a person and the society they inhabit.

Recently, I was going through my own blog and reading everything I’d written in the past. A few lines from a specific post made me look back and think about how I swam upstream against rough waters all my life: 

 ‘1971, (is) the year when India and Pakistan witnessed a 13 day war, which is regarded as the shortest war in the history of the wars of the world…and in the same year on 12th June, 1971, exactly two days after my third birthday, started another war…The War of My Survival.’

On a hot summer day that year, I became ‘special’. A deadly polio attack struck me while I was travelling by train with my family. Since the virus spreads faster during the summer and autumn in temperate regions, the weather also had an impact on my destiny. This was the time that polio was an epidemic in India.

Since I hadn’t received the vaccination, I got the disease. The public service announcements about the vaccine call it ‘do boond zindagi ke’ (two drops of life), and now I realise that those two drops really are life savers. They help toddlers escape suffering, a lifetime of disability, and even death, if they are administered on time.

The infection was severe. My lungs weakened, and my immunity plummeted. I even lost my voice. I had a life full of inaccessibility before me – inaccessible school, inaccessible friends, inaccessible colleges, inaccessible markets, and above all, inaccessible relationships.

Aside from my medical treatment, my parents also tried every alternate therapy to help me – from homeopathy to Ayurveda, from Tibetan medicine to Unani. My body became a subject of study for doctors and medical students. Whenever I visited a large hospital in Delhi for routine check ups, my case file always went mysteriously missing. And it always resurfaced in the medical college, because I was a ‘unique’ and ‘interesting’ case deserving of study. In hindsight, I don’t mind this because this means that at a small level, my existence could contribute to the betterment of humanity.

Still, the treatments and interventions turned my body into what I call a multinational piece of biomedical art. A Harrington rod still lies inside my spine, and I wore Milwaukee leg braces for a long time. Occupational therapy and physical rehabilitation became a part of my daily life.

Even though medical interventions are essential, it is unfortunate that our medical students don’t have a subject known as Disability Studies in their curriculum. Aspiring doctors are taught to think of disability as just as a collection of symptoms, rather than a complicated relationship between a person’s body and the society they inhabit.

In this sepia toned photograph of Abha as a little girl, she is wearing a frock with socks and shoes along with a hair band and a bindi on her forehead. She wears a wide smile as she poses for the photograph. Next to her is a woven flower basket with flowers in it.

Abha as a little girl.

We as people who live with disabilities have the right to be treated with respect when we use medical services. But the way I’ve been carried from stretchers, the way in which measurements for leg braces have been taken, the way my privacy has been invaded as a teenager – all of this has been extremely humiliating.

But it is quite satisfying for me to think now about how I have been able to protect the emotional being inside of me against being suffocated by pain. People tend to think that the more mature a person is, the less emotional they are. But I don’t agree with this. As far as I am concerned, our emotions make us humane. I am proud that I am emotional rather than bitter and heartless because of my experiences. I still know how to smile and laugh, and even be mischievous sometimes.

When I sit back and reflect on my life, I realise that my disability has become, as Neil Marcus has said, ‘an ingenious way to live.’ I’ve become more creative when it comes to doing even daily chores and personal grooming. I have become an expert in time management since many of my movements are slower than those of others. I am my own dietician, fashion designer, and interior decorator. I customise everyday things to suit my abilities. I can confidently claim that I have successfully incorporated disability into my life.

Though the years that have gone by have been full of agony, discomfort, loss and hardship, being disabled hasn’t intrinsically made me worse off. The problem instead has been that my disability has been considered to be a ‘bad’ difference from the norm, instead of a mere difference from it.

  Pictures courtesy: Abha Khetarpal Maurya