Coffee Break / Speaking Out

From being declared dead to waking up with paralysis: Virali Modi’s inspiring journey to make India disability-friendly

. 5 min read . Written by Rasika Rane
From being declared dead to waking up with paralysis: Virali Modi’s inspiring journey to make India disability-friendly

India lacks the awareness and acceptance of people with disability. And this needs to be changed.”

Standing by her quote, Virali Modi is on a drive to change India’s mindset in regards to disability.

She’s open & proud of her disability. She doesn’t shy away from making people accept her the way she is. She’s vocal. Whether it is speaking out against mishandling by airport staff, lack of safety for the disabled or starting an initiative to make India wheelchair accessible. She’s fiery and articulate.

“A ‘Disability’ cannot stop you from pursuing your dreams. I will keep fighting for my right to pursue my passion. Just because my legs aren’t working, doesn’t mean that my right to live is over!”

Virali thrives by this idea.

She is a disability rights activist, writer, model and a motivational speaker. Her wheelchair hasn’t stopped her from making a career that she loves.

Born in India and raised in the US, she had come to India to visit her extended family in 2006 when she contracted malaria. It went undiagnosed upon her return to the US despite subsequent tests. During the diagnosis, Virali slipped into a coma for 23 days, during which she was declared dead thrice. The doctors advised pulling the plug on her when her parents insisted to let her be until her 15th birthday. She woke up from the coma to find she was paralysed waist down. That changed everything.

Initially, she struggled to accept what had happened. There was a pattern with acceptance which led to depression and suicidal tendencies. She owes it to her mother for making her realise the importance of self-love and self-acceptance.

My mom really helped me through it. She spoke to me about how it’s important that I need to be comfortable in my own skin. You need to learn how to live in this new body.  You need to give life a chance as the universe is giving you a chance to do something amazing.”

At that time, she took it with a grain of salt as any teenager would. But soon understood what her mother was trying to teach her.

That self-love, it comes, dheere-dheere. It grew to a point where I was able to go to a coffee shop by myself, sit there, have a cup of coffee without feeling sad for myself. My mom taught me to embrace my new life with an open arm and start doing something for myself, something that I dream.”

Her activism began when she came back to India in 2008 for further medical treatment including holistic medication such as homoeopathy and Ayurveda. That is when her first experience with India’s attitude towards disability happened. According to her, living with stares was still easy, but sexual harassment is something that can never be normalised.

“I’ve been groped and manhandled three separate times by porters who were helping me board the train. The general mindset is that she’s disabled, what can she do?”

Right after, she wrote an open letter to PM Modi asking the government to ‘make India accessible‘ which was soon closed, the reason being that ‘the case does not pertain to the Prime Minister’s Office’.

She then turned to the most powerful tool there is in a democracy, the people. She filed a petition on for called #Indian Railways disabled-friendly and asked people to sign as a support for the cause. The campaign took off and immediately led to four railway stations in India to be wheelchair accessible. Since then, it has been growing with more and more places becoming disability-friendly including streets, sidewalks and restaurants. As an activist, she has been doing a great job in making India accessible.

Motivational speaking began right after the initiative took off. She started getting invitations for sharing her experience through talks.

Her writing career began as she started writing about her life’s experiences on Quora. “I wrote about my life experiences, giving life advice while I was experiencing life itself. My idea was to use Quora as an escape and use it to vent out my emotions and frustration in a positive way.”

She wants to change the mindset of people and work towards acceptance of disability in India.

“There are two mindsets around disability. One is that ‘Oh my god, she’s so bichari’ wala mindset and the other is ‘Oh my God, she’s so inspiring’ mindset. There’s no empathy like ‘Oh, you’re a cool person, let’s hangout.’ It’s either the pity or the tokenism.”

Most people in India see a specially-abled person with sympathy, but they do not empathise.

Virali recalls an incident at the mall where a kid ran up to her and started playing with her chair and asking questions. The parent immediately interfered stopping the child while she encouraged the questions and also built a narrative around it saying that she didn’t wear a helmet and so crashed on the road.

I try to create a positive narrative around it. Something that our Indian parents don’t expose their kids to. This whole awareness part will make them more accepting of the disability.”

It’s all about mentality and visibility. Lack of social acceptance, that leads to a lack in accessibility. This pitches in a huge way in the Indian workforce. There are not a lot of companies that make themselves ‘disability-friendly’. They do ask you about your disability while you apply for a job. But rarely do they have a provision in case someone with a disability gets the job.

According to Virali, it boils down to connectivity. When we step out of our homes in the morning, we don’t have to worry much about how to get to work and if it will be accessible. But when a physically challenged person thinks of stepping out, there is a lot that needs to be thought of. Are the roads good enough for the wheelchair? Is there a ramp on the bus or train? How will I go about the stairs if there are any? Is there a ramp in the office?

Having accessibility in workplaces is incredibly important, but it’s also about connectivity.

No one with a physical disability applies to the available jobs because they think of connectivity. Very rarely it happens that a physically challenged person applies to a job in a normal scenario and gets it.”

If you’ve noticed companies like Future group and Being Human hire people with hearing impairment. But no one hires for locomotive disability or visual impairment. They’re just picking out disability as a token to facilitate a small section of a very large demographic. And this needs to be changed.”

India needs to be accessible everywhere. We need to work on making the connectivity accessible. This does include just workplaces, but every other place that a person needs to go in order to live a normal, happy life.

Virali is very happy with her journey. She has made her career out of making India disability-friendly through awareness and acceptance. She didn’t just do this for herself. She has changed the lives of a million others who face issues but don’t want to talk about it. She became the voice to all the people who struggle with their disabilities but don’t know how to make the change happen.

I did not know that I could create the impact that I’ve created. Let alone while following my dream and my passion. Just knowing I could do that is amazing.”