My Story: 'My Disability Isn't My Liability, It's Just One Of My Identities'

I was born with a tongue twister-y medical condition called Arthrogryposis Multiplex Congenita. It meant that my muscles were weak and my joints were stiff. As a result, I couldn't walk without support. Other than that, I also needed assistance with my routine care needs.

From bathing and dressing up to laying on the bed or getting a glass of water - I am dependent on my parents. To help with my muscle strength, my mother took me for physiotherapy every evening. I hated it. I would cry in pain but my parents wanted an easier life for me. They were hopeful that my condition would improve and I would be independent, at least to some extent. Because, just like all other parents, the thought of what would happen to me after they wouldn't be there, haunted them.

Just when physiotherapy would start bringing out a pinch of improvement, the doctor would quit - either because of better prospects or low pay. I was nothing but a test case for them.

Childhood Struggles

In order to make my disability go away, we also visited numerous holy places and doctors. From Tirupati Balaji to Mehndipur Balaji, we visited them all. Once a relative told us about acupuncture therapy that had helped a lot of people in the neighborhood. We decided to give it a shot too. Hence, began the journey of tens of needles making their way through my skin all over my body for 40 minutes every evening. There was nothing more painful than that.

Funny thing was the head of that place had guaranteed I would walk on my own after 120 days. Cut to 2 years, my father was still carrying me in his lap when we visited it the last time.

I had many friends and I feel proud and grateful that I'm in touch with some of them even today. They helped me throughout my day in school - from helping me take out books from my bag to shifting me from my seat to the wheelchair and back. While some friends made me feel at home, some belittled me for my disability.

Once, my classmate told me that she was not my servant, referring to the help I needed. Another time, in Grade 11, my friends left me alone during a cultural event. What frustrated me was that they would leave their belongings to take care of. I sent out a word to call them multiple times but to no avail.

My teachers were really supportive. They would encourage me to take part in extracurriculars and even in classroom discussions, and didn't discriminate against me on the basis of my disability. They understood that I was different but also knew that I was not less than anyone else.

Parental Support

But the strongest rocks have been my parents. My father is the most optimistic person I have ever known. Since the beginning, he has told me that I can do anything I wish to - all I needed to do was think and believe strongly in my ambitions.

When my parents were trying to get me admitted into a mainstream school, my grandfather rubbished their attempts by saying, "Yeh kya karegi padhke?" (What would she do after studying?) That was the perspective—a disabled child was good for nothing. Their future and life was destroyed already.

However, my parents believed that education was the strongest weapon one could have. They believed in the power of education and that an educated individual could turn their fate around the way they wanted. Nevertheless, my parents paid no heed to all the backlash they received and continued to look for a school where I could study.

They visited every school in New Delhi and everything went well but as soon as the principal got to know that I was disabled, they would say no. The Right to Education Act wasn't a reality then and my parents had nothing to fall back on. So they continued looking for a school. Soon, I secured admission and started studying.

Once I got admission, the school took an undertaking that my mother would stay with me in school to cater to my needs. Left with no other choice, my parents agreed and my mother began staying with me in school every day from morning to afternoon. It felt as if the school had done a favour by giving me, a disabled student, admission and once they admitted me on paper, their job was done.

I say on the paper because it was token admission. The school wasn't accessible. My classroom was on the upper floors and my parents had to carry me every day twice or thrice to make me reach there. When we requested for my classroom to be shifted to the ground floor, our request was rejected. However, with persistent efforts, it did pay off and my classroom was relocated - first next to the restroom on the same floor, then to the ground floor.

The labs, art rooms, and music rooms weren't accessible either because there were no lifts or ramps. Till the time I was young, my parents carried me to the different labs and rooms. But after a point, it got difficult for them and I had to stay in class while all my classmates went to study. For someone who loved to paint and sing, it was upsetting because I had to sit alone in class during that time.

My mother has ensured that I participated in every competition that took place. Be it art, music, drawing, fancy dress, debate, or calligraphy, I was sure to partake. And I feel that is where I began understanding that I could do everything and anything I wished for. I remember my mother would excitedly ready me for competitions —at times she would deck me up as a tribal folk or Cinderella who used a tricycle, other times she would help me learn the lyrics of a song or a poem. Seeing me win prizes would make her the happiest.

The lengths and widths of my father's positive approach intrigue me. Just when I'm on the verge of giving up and every inch of my being echoes, "This cannot be done anyhow," my father emerges and assures me that I can do it. And guess what?

I come out victorious, every single time!

From forcing me to wear my AFOs aka ankle-foot orthosis (because I just hated them beyond comprehension) to making me walk even when I resisted, he has always brought out the best in me. He always tells me, "Aap sab kuchh kar sakte ho, agar chaho toh…" (You can do everything that you wish to do) and that has been the greatest thing that has helped me become whatever little brave woman I am today.

Challenges And Roadblocks

The greatest challenge was inaccessibility. For persons with disabilities, an accessible environment enables them to function effectively. However, how often do we really see ramps or tactile tiles or Braille signages? Hardly any time. That's because there's so little awareness about accessibility, inclusion, and disability rights.

Imagine the message lack of accessibility sends out to people? It clearly echoes, "You're not welcome here!" And persons with disabilities have been managing to survive in a world that is not built for them. The lack of awareness or simply "forgetting" to install ramps or elevators means that we don't even include persons with disabilities in our world.

In fact, many people still believe that wheelchair-users are meant to live only in hospitals! After we moved to Jaipur five years ago, my mother, who has also worked in the disability sector, visited a restaurant in our vicinity that was under construction. She requested the manager to install a ramp so that wheelchair-users could also come and enjoy themselves there.

What she got in return put her at a loss for words - Yeh koi hospital thodi na hai jo yahan wheelchair wale log aayenge (This isn't a hospital where wheelchair-users would come).

Wheelchairs are still looked down upon as ugly or "not normal". Every single time I move out of my house, into a public space, I have tens of pairs of eyes following me as I roll on my chair. What's wrong with using a wheelchair?

Just how non-disabled people use their legs to move around, I use a wheelchair because mine don't do their job. One time when we visited the very famous Birla temple in Jaipur with my grandparents, I was denied entry with my wheelchair and was told that I could only enter if I left it outside the main prayer hall. The security personnel who stopped us weren't even aware of what to do when a wheelchair-user visits.

They were oblivious of this! It was humiliating for me and my family but it poses serious questions on the level of awareness we have in our country about the accessibility and inclusion of persons with disabilities.

Wherever we go, we advocate for wheelchair access because it is what my life and that of millions of other wheelchair-users revolve around. We feel hopeful about a brighter future when public accommodations understand our concerns and make efforts to make their spaces accessible.

The other challenge was not something tangible but psychological apprehension to disability. When people see me, they go 'tch tch'. Without even knowing me and the kind of life I lead, they assume I have an unhappy, sorrowful life. But I don't! I lead a happy, fun, and the most happening life ever.

My disability isn't my sad reality. It's just one of my identities and I'm proud of it.

There have been uncountable instances when complete strangers have suggested remedies to "cure" my disability — everything from oil massages, yoga, dieting, acupuncture to heat therapy and dieting. They've gone on to inquire about my medical history and make comments on it as if it was a piece of national interest.

How often, if I may ask, do you ask random people you see on your way to work, on the bus, road, or in the marketplace, why they're fat or why they're wearing a particular type of shoes or simply "what happened to them"? Feels weird right? Because why would you ask for such personal information from people you don't even know? So what happens to the right to privacy of persons with disabilities?

No one - disabled or not - should be subjected to reveal their personal information without will. No one is bound to you. Just because I look 'different' doesn't mean asking about the reason for the difference is okay.

Message For The World

Educate yourself about disability. Befriend disabled folks. Don't assume people with disabilities have an unfateful life because they don't. They have certain needs which may be different from yours but are equally valid and important. Please don't ask about our medical history. If you're curious, proceed in a polite way but don't insist if someone's not comfortable.

Advocate for accessibility because everyone, at some point or the other needs accessibility. Use the right terms to address persons with disabilities. The best is to ask what works for them. Please don't impose the terms that seem appropriate to you on them. Words like specially-abled, differently-abled, physically challenged, divyang - all feel positive to hear but they're not what persons with disabilities relate to.

These terms are called euphemisms and they make the non-disabled people feel good about disabilities because we've been conditioned to believe that disability is something bad and undesirable and no one should ever become disabled.

I would just like to reiterate what my father always tells me - you can do everything that you wish to! Your disability is not your liability, it is one of the many things that make you 'you'. The world will pull you down and make you feel unloved and unworthy but remember to turn around and remind it that no one can stop you from making a life for yourself that you deserve.

Understand your limitations and accommodate them. Be proud of your disability and never ever shy away from demanding your rights. The world won't listen until we speak up and now it is time for us to scream in unison.

If you too have an inspiring story to tell the world, send us your story at mystory@thelogicalindian.com