- Date : 06/05/2019
- Read: 8 mins
Meet the amazing Virali Modi who has not let any obstacle stop her. She continues to March ahead, inspiring millions on the way
A simple, intelligent, eloquent 27-year-old Virali Modi is a force to reckon with. She is a model who also loves to write and inspires people with her beautiful words. Oh yeah, and she is a wheelchair user.
Her spunk, enthusiasm and optimistic vibe will make you fall in love with her. Though life has not been easy for her, she has made the very best of her situation and comes out as a champion.
There is so much to learn from her – perseverance, iron-will and confidence.
Being diagnosed with transverse myelitis, a neurological condition in which the spinal cord gets inflamed and damages nerve fibres, at the tender age of 15, Virali has come a long way.
In a free-wheeling chat, we got to know more about her. Here are the excerpts:
P.S. Cute dog videos make her happy!
What are some of the challenges you faced as somebody who is a wheelchair user?
When I found out about my medical condition, I was 15 years old. I was in a coma for 23 days and was declared dead thrice. Miraculously I came out of the coma, but I was paralysed from the neck down. I didn’t realise this as I still felt I could move my body. My parents or my doctor didn’t tell me this. It was my grandmother who stepped up and explained it to me. I was very angry. Not as much at my physical condition, but more at my parents who didn’t tell me about it. Now I think back, it could have been because they were distraught and didn’t have the courage to tell the daughter they love so much that she could never walk again.
Once I went home, I slipped into depression and tried committing suicide twice. This was mainly because when I reached out to my friends and extended family, they weren’t very receptive of the disability. My friends merely teenagers thought I would become a burden to them and they will constantly have to look after me. My cousins who wanted to hang out with me were discouraged by their parents. The emotional impact was heart-breaking. However, I should point out that acceptance by my immediate family was never an issue.
Physically, I needed help for every single thing 24X7. Before the incident, I was a very independent person. So asking for help was extremely foreign territory. I didn’t know how to ask for help. I was wary that my parents would not be able to accommodate providing constant assistance.
How did you overcome these challenges to be where you are today?
With intense physical therapy, I have regained movement up to my hips. My mom has been a force of nature throughout my ordeal and road to recovery.
I distinctly remember one day I was hungry and asked my mom for something to eat. At this point, I had regained some sensation in my fingers but still couldn’t move my wrist. I was sitting on the floor and she got 4 bowls of biscuits and spread them around me in a half moon. She told me I should feed myself if I was hungry and she was tired of being my maid. She then went and sat on the sofa. I was in tears. I couldn’t understand how my own mother could do this to me. Of course, later on, I understood it was tough love and her way of nudging me to get better.
I was determined to eat by myself. Honestly, I don’t know how I did it. I remember grabbing the carpet to go closer to the bowls, reaching out to grab the bowls and picking up a biscuit. It took me 45 minutes to eat a piece of biscuit but I did it. The sense of satisfaction that gave me, I doubt I will ever experience in my life again. My mother’s tough love has pushed me to become strong-willed. It totally changed the game for me.
Tell us about your role as a disability rights activist? How did it all begin and how are you helping to improve the living conditions for India's disabled?
In 2008, when I shifted to India from the US, I had to go from Mumbai to Delhi via train. My wheelchair had to be carried by porters as our train infrastructure don’t support accessibility. I was molested on three instances by porters. I didn’t say anything that time because I didn’t want to give anyone the opportunity to shame or blame me. In 2017, when the Accessible India campaign started and the Right to Person with Disability Bill got passed, I was very happy that our government was acknowledging people with physical challenges and doing something about it. That is when I started a petition called #MyTrainToo for accessible Indian railway. The petition is on-going and I have over two lakh signatures on it.
A railway official from Kerala approached me and we made six railway stations in Kerala wheelchair accessible without renovation. What we did was we implemented portable ramps and small aisles that are small enough to store inside an expressway train. This small implementation helped facilitate the lives of so many people in Kerala. The feedback we got has been spectacular.
We have been trying to emulate the same here in Mumbai, but honestly, it has been difficult but we are working towards it.
I don’t want to sit around hoping other people will bring change. I want to be the change I want and go out there and try to make a difference.
How important a turning point was your participation in the Miss Wheelchair pageant in 2014?
It was important as I always wanted to be an actor and model. I felt Bollywood is such a vast platform where I could reach so many people from different demographics. After I won second place in the Miss Wheelchair pageant, it gave me to motivations to keep continuing on my path. It has given me very cool opportunities. I shot with Salman Khan for Being Human in 2018. I was a showstopper at FBB fashion event in Jaipur this year. I was the showstopper at Bombay Times Fashion Week. I truly enjoy it. My main focus this year is going to be my modelling and acting career.
How do you motivate yourself whenever you feel low?
I have my moments. There are times when I am very confident and optimistic. And then there are other times when I crib and whine. It feels like nothing is going right in my life. I feel I have the awareness that I overthink and over-analyse every situation. When I feel low and hopeless, I have this alter ego that tells me to just chill and take it easy. The good thing is I listen to this voice. Whenever I feel low, I go on to YouTube and look at cute dog videos. It always cheers me up.
What is your message to those fighting their personal pains, tragedies, disabilities?
I tell them every day is a new day. The sun is out, birds are chirping and it is a new beginning. You do not need to live a monotonous lifestyle. Being low and in despair can get exhausting real quick. So why do it?
My mom told me, “There are two ways to live your life. When you crib and cry, the days seem so long and never-ending. When you laugh, have fun and start loving life, it becomes so much easier. Use your brain to do different things and be more innovative. Spread the joy and positivity.”
I am so glad I listened to her. I chose the sweetest apple instead of the bad apple in the basket. I am using my capabilities to show the world what I am made of. I always say this, if you have a problem, great…go ahead and solve it. If you cannot solve it, then it is not your problem anymore. I cannot drastically change my disability, but I can sure live the life I want.
How do you motivate them to pick up their lives again and give it a new direction?
I show them by example by being relatable and relevant. I do all the things, someone, my age would do. Recently, I went to the supersonic music festival where people lifted my wheelchair in the air and I crowd-surfed all the way to the front. I played Holi at The Lalit and had a ball. I do all kinds of crazy things. I model and was featured in an ad for the Navi Mumbai Marathon in 2015. I am very active on social media and show people who are in similar situations as me that they can lead a full life as well.
I want to tell everyone to live, love and laugh as life is very short. We tend to live in our past or focus on our future. We tend to forgo our present. Try making as many memories you can within this moment.