Understand that living with a disability makes me neither ‘helpless’ nor ‘heroic’

“She should have died at birth.”

“She’s too beautiful for this.”

“You’re an inspiration. I want everyone to see you and think, ‘If she can do it, why can’t I?’”

These are various things I’ve heard (in various versions) many times in my 25 years. Perhaps I don’t even need to tell you this – by now, you must have already figured out that I’m a person with a disability.

I grew up with cerebral palsy, a congenital disease. As far as most people are concerned, it’s not something I live with, it is something I “suffer” from. As a result, other people usually have two types of approaches to me. I’m either pitied (and shunned) or made into an object of inspiration. I’m rarely introduced as Preeti, the great conversationalist, or the bibliophile, or the nerd, or the fashion enthusiast, or the girl who sucks at maths. None of these things matter in the face of one overwhelming reality. I’m always the girl on the wheelchair.

Cycle of objectification

This has always had an impact on me. It has pushed me to want to prove that I am neither an object of pity nor heroism. It has harmed me. I’ll give you a few examples:

When I was eight years old, I applied to a regular school. I was denied admission outright because I wasn’t “normal” enough for them. I had to go through rounds of questioning and tests, which none of my peers had to do. When I passed all of these, the school had no option but to admit me. Three years later, when I was moving away, I was awarded by the same school authorities. It wasn’t because I had done spectacularly well at school – I was just a kid trying to keep up – but because they could congratulate themselves on having admitted me. The entire event revolved around how the school had been supportive of me, how I was a “brave” kid, and even involved some of my classmates receiving medals for simply being friends with me.

When I was nine, I went to my hometown for my grandmother’s funeral. There, a couple of women caught me alone and told me that I was a burden on my parents. They said that I should have died, and that it was stupid of my parents to spend so much money on my health and education. In the months that followed this incident, I became severely depressed. I had always been a sensitive kid, someone who couldn’t express her thoughts easily. But I kept thinking about what they’d said to me, and began having persistent headaches. I hated everything, even going to school, because that was a whole other fight.

My parents took me to a doctor, who gave me some medication and told them to spend more time talking to me. It took me four months to tell them what had happened. I asked them if I was really a burden on them. My parents were baffled, but they supported me in every way they could. I had started thinking that it was bad for me to be someone who uses a wheelchair, but with their support, I finally came to believe that I am whole.

Unsupportive people

By the time I got to college, which was great, I started advocating for myself. It is not me who is flawed, after all, but the design of the infrastructure around me that is lacking. My college in Delhi was not only accessible, but adaptive. Ramps were for everyone, not just for people with disabilities – which reduced the focus on me. Nobody stared at me as though I was an alien. However, this positive experience was majorly limited to my college and its campus.

Even when infrastructure is supportive, people are not. A prime example of this reality is my experience of the Delhi metro. It has given me the independence to go places, but every time I use it, other people’s eyes follow me. Once, as I got into the elevator, someone looked at me for two seconds and simply said, “What is wrong with you?” I almost broke into a laugh, and responded, “Nothing. What’s wrong with you?” He then said, ‘Why are you travelling by metro? Is this even allowed?” Before I could respond, the elevator doors opened, and he exited.

Another time, a woman acted like she almost wanted to adopt me because my cruel parents clearly didn’t love me enough. Why else would they let me travel independently to classes and to work? To her, I was a “special” child – she said she would never let me leave home and would feed me delicious meals all my life. As funny as this sounds, I felt scared of her because she seemed dead serious. She also referred to me as “devi ka roop” (an aspect of the goddess). That’s when I got out of the train, because I simply could not make her see that I love being independent and that I certainly was not going to leave my parents for her!

Leading my life

In the last few years, I have received numerous invitations to speak at events, to attend award functions – all this, because I am “brave”. I am called brave because I wake up in the morning, go out, take the metro or a bus, shop for my own clothes, and binge-watch Netflix. I don’t want to sound ungrateful – I know that there are many people who don’t have the privileges and access that I do. But to be called brave for leading my own life does feel like objectification to me.

People with disabilities are paraded around with thoughts like “What’s your excuse?” and “If they can, you can”. I simply don’t relate to this approach. As a person with a disability, I don’t want to be a figure of bravery. I want to simply be accepted as I am. The lens of bravery prevents people from really seeing me, the person who might be dealing with difficult mental health, experiencing heartbreak or simply having a bad day. If people want to talk to me about the work I do to make my country more accessible and accepting, I’m happy to talk about this. But if my achievement is simply waking up in the morning, this makes me feel discriminated against, not celebrated.

Having a disability has its challenges, but it’s not bad, and it’s certainly not sad. Like the rest of society, people with disabilities are simply carrying on with their lives. Whether we are being pushed away because we are pitied, or pushed forward because we are used as objects of inspiration, both ways, our common humanity is denied. Let us be who we are: complex, capable of many things, both good and bad. Realise that the most extraordinary thing about us is that we are ordinary.

Preeti Singh is a commerce graduate from SRCC and first runner-up of Miss Wheelchair India 2017. She is a CA pursuant on the professional front. When not dealing with numbers, she writes actively about inclusion and accessibility on various social media platforms.

This article first appeared on Skin Stories.


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Report and write stories for Indianspice.co.za. It is our ambitious goal to cover issues/events/news concerning South Africa and the diaspora.

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