Winner of Miss Wheelchair India Pageant in 2014, traveller, writer, a mini-celebrity on Quora, and motivational speaker, Virali Modi is accustomed to dealing with constant reminders of the condition that renders her unable to walk. On three separate occasions, the 25-year-old was groped and manhandled by porters at railway platforms in India while they lifted her or her chair into the train.

“The first time it happened was in 2008,” said Modi. “I was travelling to Delhi with my mother for treatment. She asked two porters to help transport me into the train and onto my berth and while one of them scooped me from under my legs, another lifted me from under my arms and wrapped his arms around my upper body. It took me a while to realise that his ‘accidental’ brushes all over my upper body were very much intentional, but I was afraid to say anything in case they just drop me and leave. So I was being groped by men my father’s age. People around me in the compartment stared quietly and I could see sympathy in their eyes but nobody helped. I was ashamed and humiliated.”

Two months ago, Modi started an online petition on Change.org to make the Indian Railways disabled-friendly. Addressed to the Indian prime minister and the Union Minister for Railways, Suresh Prabhu, Modi raised issues like lack of privacy to change in the berth, space to manoeuvre wheelchairs and the lack of proper ramps for a disabled persons to be self-sufficient while travelling, in her petition.

Virali Modi. Credit: Facebook.com/viralimodi1

A bout of malaria, left untreated, led to paralysis when Modi was 14. On the podcast Learn, Educate, Discover, Modi talks in harrowing detail about the series of events that led to it. After returning to her home in Pennsylvania, US, from a trip to India during the monsoon, Modi was admitted to the hospital where doctors failed to detect her malaria. After months of medical tests, procedures, coma and being declared clinically dead thrice, Modi survived, but with a loss of sensation below her neck.

It has been a long journey for Modi to become the confident woman she is now. She has travelled the word with her family. “I have been to 42 states in the US, I have travelled around Europe, Canada, South Korea, Africa and Asia. As easy as it is to get around in the US and Europe, Africa and India have the worst provisions for the disabled. But, what Africa lacks in infrastructure, it makes up in how everyone is ready to help.”

After moving to India in 2008 for medical treatment, however, Modi has been apprehensive about travelling in trains and local transport systems due to lack of facilities and, more dishearteningly, empathy and help from the people around her. “India is truly not for the disabled,” writes Modi in a blog post. “Public transportation isn’t accessible, let it be buses, rickshaws, taxis, trains, or subways. They are not for the disabled. There are some taxis that have lifts and private car dealers that provide accessible cars, but they’re expensive because there are few accessible cars and taxis, but not everyone can afford them so they are humiliated and they feel like a burden, truthfully.”

Her petition on Change.org has received 147,615 signatures till now and has managed to attract attention from Prabhu on Twitter and from Maneka Gandhi, Union Minister for Women and Child Development. Shortly after Modi’s petition appeared online, Gandhi responded via a post on Change.org: “The Ministry of Railways under the leadership of Sh Suresh Prabhu ji has been conscious of this issue. However, keeping in view the desirability of facilitating comfortable travel for disabled persons, I am writing to Sh Suresh Prabhu ji to request him to take up the required changes in mission mode.”

Have taken note.Already w'king on making our stations,trains Divyang friendly,hv made significant progress,lot is 2 be done.Any idea welcome https://t.co/Gg8BQYFm1w — Suresh Prabhu (@sureshpprabhu) February 9, 2017

“I really appreciate that Mr Prabhu has at least acknowledged my petition,” said Modi, who felt the right time was now to start talking about access for the disabled and attempt to engage the government in this conversation, because according to her, the Bharatiya Janata Party has been responsive to the issue of disability. In December 2015, Prime Minister Narendra Modi initiated the five-year Accessible India Campaign, which aims to provide access to differently-abled people by making transport systems, public spaces, tourist places, airports, railway stations and information and communication technology in India disabled-friendly. The recently inaugurated Yeshwantpur-Hassan train service includes a coach for the disabled.

Soon after her petition went viral, three major railway stations in India – Chennai, Kochi and Trivandrum – took measures to become wheelchair friendly.

In her petition, Modi lists the facilities that should be provided to the disabled: accessible bathrooms with proper space, accessible coaches (ideally one for each class), space between berths for a standard-sized wheelchair, curtains around the berths and prop infrastructure to cross railroads to change platforms.

According to the The Rights of Persons with Disabilities Act, 2016, the government of India has promised to make public facilities accessible to the disabled. According to the Act, “The appropriate Government and the local authorities shall formulate and publish an action plan based on prioritisation, for providing accessibility in all their buildings and spaces providing essential services such as all primary health centres, civil hospitals, schools, railway stations and bus stops.”

Modi, however, has lived through experiences which prove otherwise. “It’s not a shock that railway stations aren’t disabled-friendly, but take the Reserve Bank of India as an example,” she said. “In 2014 they issued a notice advising banks to provide ramps in all existing and future ATMs and at the entrances of bank branches. I visited the Mumbai RBI branch once for some work with my mother and the RBI building itself has no ramps.”

Attitudinal shift

For the aspiring actor, an attitudinal shift is just as important. Modi has been at the receiving end of discrimination, be it in public spaces or at acting and modelling auditions. “I have been told not to block traffic or take up space on the roads when attempting to get out of cabs and shifting onto my wheelchair. When auditioning, all they see is my disability. It’s not like I’m not talented enough or pretty enough. They tell me I would have been perfect for a role if only I could walk.”

Modi cannot help but compare India to the Western world when it comes to being accessible for the physically and mentally disabled. Talking about her experience of travelling in a train in the US, Modi talked about the ease with which she could do that journey. “I could easily roll myself into the train, the bathrooms were accessible. I wasn’t segregated from the rest. There are hydraulic lifts in most airports to get me from the tarmac and on to the plane. These facilities need to be provided in India too. The lakhs and crores spent on cosmetic changes done to the Indian Railway trains need to be redirected to make them disabled-friendly.”

The work needs to be done in tandem with those living with disability, she added, to really gauge what we need.