Bengaluru: Never give up — these were the simple yet profound words that kept Virali Modi, 26, fighting on after a deadly bout of malaria had her comatose for weeks and left her paraplegic and wheelchair-bound at the age of 14. In coma for 23 days, she miraculously opened her eyes on the day the doctors decided to remove her life-support and has not stopped since then, fighting for her rights — and those of other disabled people.
Manhandled and groped by railway porters when she had to board a train, Virali made “accessibility for everyone” her life’s mission in a country that is supremely indifferent to the plight of the disabled.
“I’m a disabled woman from Mumbai who loves to travel. I’ve been groped and manhandled three separate times by porters who were helping me board the train because Indian trains are not wheelchair accessible.
“I’ve had to wear a diaper because I couldn’t use the train’s lavatory. My fight is to ensure human dignity for the disabled,” Virali wrote in a public petition about a year ago that caught the attention of tens of thousands of netizens across the country, including Women and Child Development Minister Maneka Gandhi, who responded to Virali, assuring accessibility in trains.
Addressed to Prime Minister Narendra Modi and then Railway Minister Suresh Prabhu, her brutally honest petition on the platform change.org shared her ordeal as a disabled person on an Indian train.
“Most people with disabilities are restricted to their homes because our roads, public transport and most of our infrastructure are not wheelchair-friendly. The disabled don’t know where to go and how to get there, making disability almost an invisibility in our country,” Mumbai-based Virali told IANS in an interview.
While her petition and campaign — which she named “My Train Too” — garnered massive support in the digital world with over 200,000 people standing by her, not much translated into reality until she decided to take matters into her own hands.
“Several railway officials who read my petition contacted me, wanting to work on making trains accessible. Together, with the help of a few non-governmental organisations, we have set up portable ramps and foldable wheelchairs at railway stations in Kochi, Thiruvananthapuram, Thrissur and Ernakulam in Kerala, and Chennai and Coimbatore in Tamil Nadu,” informed Virali, who is also a motivational speaker.
The portable ramps and aisle-size foldable wheelchairs enable the wheelchair-bound to board the train and access the train toilets with minimum or almost no additional help.
“I’m also working with the railway officials in Mumbai to make its railway stations accessible. This was all possible without any government help. Imagine how much easier the life of those with disabilities in this country will be if the government was also keen on accessibility,” quipped Virali.
India is home to at least 26 million people with disabilities (according to the Ministry of Statistics data, 2016) and Indian Railways cannot continue to treat the disabled as “pieces of luggage”, she resolved.
“Many who read my petition were not sure if it was going to change anything, but my mother (Pallavi Modi) stood by me in my fight, along with thousands of people who actually wanted to work towards better infrastructure for the disabled.”
Virali, who currently works with Mumbai-based travel portal Enable Travel that curates holidays for people with all kinds of disabilities, dismisses any alternative terms for the disabled like “differently-abled” or “divyang” (divine body), a term used by Prime Minister Narendra Modi.
“For a Prime Minister to use such terms is regressive and insensitive. Why do we Indians have to mask the disability and introduce new terms? The term might sound liberating to someone who is not disabled, but it covers up all the struggles we face to get through each day. Such terms need to be abolished,” she asserted.
“India needs to acknowledge the elephant in the room and call it a disability. As a country, we need to be more open about disabilities.”
The Prime Minister had also launched “Accessible India” campaign in 2015 for achieving universal accessibility in the country.
“What has been achieved through the campaign over the last three years? Our struggles have been the same,” she asserted.
Having lived in Pennsylvania in northeast US for over a decade since she was four, where her father Jitesh Modi worked with a hospitality firm, Virali lamented that India’s position in accessibility is “alarming”.
“The accessible infrastructure in the US made me so independent — I was comfortable going anywhere on my own. In comparison, I feel extremely dependent and scared to go anywhere without assistance in India,” said Virali, who holds dual citizenship of India and the US.
In 2006, when she was 14, Virali had visited India for a holiday during the monsoon month of July, when she contracted malaria, and returned to Pennsylvania to her school, when the illness began to surface.
“The doctors couldn’t diagnose it as malaria and over time I began having seizures in my body which led to a respiratory and cardiac arrest and I was comatose for 23 days. I miraculously opened my eyes on the day that the doctors had decided to remove my life-support,” recalled Virali.
With years of therapy and hard work after a near-fatal condition that paralysed her neck down, she regained sensation and movement capabilities in the upper body and is currently working towards being able to walk without any support.
Hailed by her doctors as a “miracle”, Virali is now a motivational speaker delivering talks around the world, through which she emphasises on never giving up hope in life.
“I was always keen on modelling and acting since childhood. But I realised that my wheelchair is seen as a hindrance by many, as many casting directors would discourage me from pursuing it. But I overcame my fears to be the runner-up at the Miss Wheelchair India in 2014,” Virali added.
The stigma around disability in the country is “shattering, but very slowly”, she averred.
“People are becoming aware that those with disabilities are fighting for their rights. But without mainstream media portraying the disabled, we can’t expect much to change. Why don’t we see disabled actors in our films?” she asked, as she pointed to the need to sensitise children in schools about disabilities.
“I will keep raising my voice till I can contribute to making the country fully accessible,” resolved Virali.