Story by Aarushi Gambhir
"She has spina bifida with hydrocephalus, she won't survive for long and if she did, she'll be wheelchair-bound with impaired mental functions for the rest of her life". This is what my parents were told when I was born. Six months after my birth I had to go through brain and spine surgery.
Soon when I had gained my sense for life, I found myself as different than others. I have been wheelchair-bound throughout my life due to my condition. The surgeries I have been through have further weakened my bodily functions. It has been a long journey ever since.
My parents have always fonded me with love and affection. They never let me feel the insecurities associated with my disability, rather they empowered me to be something in life. And with my schooling there came a time when I stepped out of the cocooned safety net of my parents and began facing the world.
Since the beginning of my schooling, I’ve often heard people say how schools don’t take in disabled children, due to the lack of infrastructure meant for them. This gets worse when schools admit kids with disabilities and do nothing to help the child integrate. Just because of my disability I had to deal with unsupportive or worse, biased teachers and insensitive peers.
The coldness was just not limited to schools, rather it prevailed in hospitals as well. In 2016 when I underwent another surgery, the doctors seemed to have taken me as an unreliable witness to my own condition. They even belittled me when I complained about severe pain post-surgery. 6 months of bed rest had caused a lot of muscle wasting. The surgery had not gone fine, I wasn’t able to stand using a walker as I used to earlier.
I remember that just before the 10th boards exams, the surgery I underwent to correct the weakness in my hands did not help and my fine motor skills further weakened. Everyone had thought that I wouldn’t be able to pass the exam but rather I passed the exam with flying colours. I never allowed my disability to impede my way of living. From academics to speaking up for myself, I’ve answered back to all those eyes that have ever questioned me.
But it still pains me to see that despite all these personal achievements, by and large, I am still considered as someone with lesser abilities than others. I find myself in a disheartened state when all my efforts are brushed off by one glance at my physical appearance.
When it comes to public space accessibility, then a lot of work has been done towards making public places more suitable for the disabled. But in my experience, most of the time from toilets to ramps meant for us, remain inaccessible. Almost all the public places I go to have a disabled toilet but it remains locked. Moreover, the accessible ones are not compatible with the wheelchair size. These things only amount to frustration and disappointments.
After passing my 12th std with good marks, I now am a proud merit student at Delhi University. One new thing I took up this year was to start my blog. I decided to use my pen and the experiences I’ve had so far, to help people reflect on their perspectives towards disability.
In my experience so far, I have either seen peculiarity or pity in other people’s eyes, rather what I actually need is, normalised acceptance. Ableism is a phenomenon that propagates having an abled body as the only way of life. And it portrays disability as an unfulfilled way of living. In a conservative society like India, the roots of such a perspective are commonly evident.
The notion that a disabled life is in any way less fulfilling than ‘normal’ life is completely untrue. This needs to change, we need to start addressing and questioning this perspective.