Progressing Through my Progressive Disorder

Updated: Sep 23


Story By: Hasitha Illa

Not a lot of Indian families feel the same way about their daughters as they do about their sons. In a country where healthy daughters are still resented, having a daughter with a disability is an even bigger issue. I was overweight when I was born - I weighed 5 kgs, and then in a few years we shifted to the USA, due to my father’s job there. My life was like that of any normal teenager - I loved playing sports and I was a very enthusiastic kid who used to partake in most events of the school ranging from swimming and football to dance.

I was 10 when my athletic coach noticed a slight limping in my movement - It was very subtle and almost non-existent. He informed my parents about it, who took me to the doctor. Initially, they assumed it to be due to my weight, but then after a lot of tests, I got to know that I had a neurological disorder. In the USA, we were asked to visit for clinical trials - once every few months, to test the new medicines for my disease, but none of them were effective or helpful. Month after month, the disappointments had emotionally exhausted me, but It was through these trials only that I slowly got to know more and more about my disease - Freidrich’s Ataxia, a genetic disorder whose impact on my body was only going to increase with time. Minor things now became more and more difficult with each passing day - I would start sweating even after walking for a few steps and I could almost never move without support. I was a child and Friedreich's Ataxia was difficult, but what made it even more difficult was the absence of support from people around me. My disease made it difficult for me to be graded in my physical fitness class, engage in dance performances, and participate in fire drills in school. I remember taking baby steps with faith that the walls beside me would keep me upright. Not just physically but even mentally, I was at my weakest point. I was bullied for being different and standing out from the crowd.  People would call me a 'Penguin' as I wadded across the room. I was isolated from my peers and I wasn't welcomed for most things. Despite having a friendly infrastructure, except my parents, there was no support and I was depressed and that was one of the most difficult times of my life. Seeing all this, my parents decided to move to India. I was 15 when we moved to India. I don’t know how, but moving to India proved to be a welcome change for me - the heart problem vanished on its own, and my mental health improved. Despite the absence of infrastructure in some places, the environment was better. By the time I reached college, walking had become more and more difficult, and I had become wheelchair-bound College gave me a lot of unique experiences. It had a supportive infrastructure in most places and other times, my peers would help me by lifting my wheelchair on the stairs. But, many questioned my presence and teachers sometimes demotivated me to continue my studies, because they didn't think I could do it. A lot of times I also felt like my peers would help me with the sole purpose of looking good in front of others. But, I also made those few friends who proved to stick by my side, no matter what. But things are still not the best for specially-abled people like me in our country. I need assistance for experiencing the simple joys of life like going out with friends. Most places are not accessible for specially-abled people, and therefore can’t be visited by people like me. For instance, I couldn’t enroll in a coaching center because it was not wheelchair friendly and had to choose an online course instead.  While looking for internships, I couldn’t apply for most organizations due to their lack of infrastructure, which left me with much lesser opportunities than other people my age.    Unlike in the USA, in India people stare at me, wherever I go, which often makes me uncomfortable. In public places, people just randomly come over and give advice about my health, without even knowing about my disease or just ask me about it. Initially, it used to bother me sometimes, but now I have learned to tackle it. For instance, my father and I play this game, wherein we take turns to narrate a different story, everytime someone comes up and asks me anything.    Despite everything, the truth remains the same that the society that we live in shames upon many things and wheelchair is one of them. Wheelchair users are not considered worthy and their potential is not believed in.  This made me want to do something about it and I took the first step in the right direction when I participated in the Miss wheelchair India Pageant. I strutted across the ramp and showed off my wheelchair with confidence. Through this move, I wanted to encourage more and more specially-abled people to come out and recognize their true potentials. Although there is still a long way to go, I felt happy that I could make a difference in my own way.  I believe that there is a purpose behind my 'disabled' birth, therefore I won't stop till I fulfill it. I was 10 when the limping started and I wasn’t able to walk normally and that is when I was diagnosed with Friedreich's Ataxia, a rare genetic disease that causes progressive, nervous damage and movement problems.  I was in the USA when the disease was diagnosed. It was Friedreich's ataxia is a genetic disease that affects the muscles and nerves which causes difficulty in walking. I started off limping through the streets and now progressed to rolling myself in a wheelchair. Ataxia not only victimizes the one having it but, affects everyone around as well. During school, I use to take baby steps with faith that the walls beside me would keep me upright. At the time I was walking but mentally, I was at my weakest point. I was bullied for being different and standing out from the crowd.  People would call me a 'Penguin' as I wadded across the room. I was isolated from my peers and I wasn't welcomed for most things. By the time I reached college, I became wheelchair-bound and because of this, I had unique experiences. Many questioned my presence in college and teachers would demotivate me to continue my studies. They would not have faith that I could and because of this, I had minimal participation during practicals. Apart from this, my peers would help me with the sole purpose of looking good in front of others. But, I also made those few friends who proved to stick by my side, no matter what. Honestly, I was skeptical to enter the fashion world because of the various judgements we face. For the longest time, disability and fashion are two things that are not mixed. But, I was super stocked to participate in the miss wheelchair India Pageant. I strutted across the ramp, showing off my wheelchair with confidence.  The society that we live in shames upon many things and wheelchairs is one of them. Wheelchair users get stared at, they are not considered worthy and their potential is not believed in. And because of this, many hesitate to step out. These unacceptable stigmas fueled me to come out and to motivate the ones around me.  I feel that there was a purpose behind my 'disabled' birth and I won't stop till I fulfill it.

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