Bold and beautiful: The lifestyles of India’s young and differently abled

  • Joanna Lobo, Hindustan Times
  • Updated: Aug 06, 2016 10:07 IST
Sonali Gupta (far left) poses with other bridesmaids at a friend’s wedding in 2012. The corporate communications executive has limb-girdle muscular dystrophy, a degenerative disease. She limps and sometimes uses a wheelchair. Online, she is known for her blog on dating and disability. Offline, her friends know her as a travel junkie – she’s lived in Spain and travelled to the Caribbean, Turkey, Italy, Morocco, and across India.

Because of her confident walk and the ease with which she uses her phone and computer, people often don’t realise that Nidhi Goyal can’t see. ‘Waiters hand me menus all the time,” she says, laughing. “But once people know you are blind, the stereotypes kick in and you are assumed to be feeble, hesitant, in need of help.”

That’s what happened on a flight to Brazil last year. At some point, Goyal, the 30-year-old writer and gender activist needed to use the bathroom.

“Before entering, I told an air hostess, as a manner of speaking, that I would be a couple of minutes. Three minutes later, she began knocking frantically and crying out, ‘Ms Goyal, are you ok? Are you ok!!!’,” says Goyal. “By the time I emerged, everyone in the last few rows knew there was some Ms Goyal who had been in the loo for a really long time. It was embarrassing but still funny.”

The incident stayed with Goyal, and she used it as a part of a stand-up comedy gig she did in Kolkata, in December, called Can You See Me Now?. It was a light take on people’s reactions to disability. Last weekend, she performed at a similar event in Mumbai.

“I think humour is the best way to create awareness about how people talk to and behave with those with disabilities. Through my act, I hope people get the point,” she says.

Across India, the young and differently abled are attempting to shift focus away from their challenges and build full lives. They’re pursuing careers in everything from corporate communication to film production, and spending their free time dating, socialising, travelling, partying and pub-hopping.

“We still have to create opportunities for ourselves because the infrastructure here is so limited,” Goyal says, “but for many of us it’s important that people see us as more than our disabilities.”

Wherever possible, they unite their hobbies and their causes to campaign for greater inclusion -- often in inventive ways. Mumbai-based Goyal does stand-up comedy gigs and conducts lectures around the world on gender, disability and sexuality. In Delhi, purchasing executive and music buff Nipun Malhotra, 28, has lobbied with the NH7 Weekender festival and restaurant reviews website Zomato to be more disabled-friendly. Content developer Sweta Mantrii from Pune wrote and performed a monologue on love, fidelity and disability.

“There is an attitudinal shift among today’s differently abled youngsters. They aren’t too occupied with activism or advocacy but would rather focus on which movie to see next, what’s their next online post that can go viral or what job will give them the most exposure,” says Javed Abidi, global chair of the non-profit organisation Disabled Peoples International. “In addition, they have a strong social circle that extends beyond family - friends, colleagues, people they meet at events or online. That is s changing the social life of a differently abled person.”

The internet, smartphones and social media are opening up to the differently abled a world of work and dating opportunities. “They have more exposure and they’re using it to change the mindsets of the people around them, including their parents,” says Anjlee Agarwal, co-founder of Samarthyam, an advocacy and research organisation that works to promote inclusion and accessibility.

Catering to this demographic are services such as Inclov, a five-month-old matchmaking app for people with disabilities and health disorders, and Umoja, a travel company for the differently abled that was launched in 2013.

“Inclov is not an NGO and it’s not about any sort of activism. We launched it because we felt there was a market for it,” says co-founder Shankar Srinivasan, a finance executive.

Encouraging as it might sound, activists point out that it takes significant means to access the technology needed to give a young, physically challenged person a full life, particularly in a country with little to no public infrastructure for this demographic.

There are 2.68 crore disabled Indians, as of the 2011 census. Of these, over 1.8 crore live in rural India, and 81 lakh in urban areas; about 4 per cent of the disabled population is under 30 .

“For most of these Indians, change depends on our government and society providing a more inclusive environment,” says Varsha Hooja, CEO of the non-profit organisation ADAPT (Able Disabled All People Together).

The gig junkie from Delhi

Nipun Malhotra, 28, a purchasing executive from Delhi says it sometimes feels like he’s wearing an invisibility cloak. “In restaurants, the waiters ignore me,” he says. “I’m never offered an alcohol menu, asked my order or given the bill.”

Malhotra has arthrogryposis, which means his limbs aren’t fully developed and he uses a wheelchair.

Nipun Malhotra (right) at a friend’s wedding in Goa last year. A music lover and foodie, he says he loves checking out new restaurants in Delhi but when he is in a group, is rarely given the menu or the bill.

When he’s planning an evening out with friend, or going on dates, he has now started picking restaurants where the staff know him. “That way I know the waiters will treat me like a human being,” he says. “I also like to impress the people I’m with by saying, ‘Give me my usual’. The waiters oblige. I was once served cold coffee and butter chicken without ever ordering it,” he says.

Malhotra loves food, cricket, clubbing and music festivals, but with most public infrastructure being inaccessible to the disabled, he gets around in a customised car with a driver.

He also has to watch all matches from VIP boxes because a wheelchair can’t get into the stands.

After being turned away from a restaurant, Malhotra lobbied with the Indian restaurant review platform Zomato to bring back the disabled-friendly tag in their reviews.

Because he wanted to attend the NH7 Weekender music festival in Delhi last year, he worked with the organisers to ensure that the event had elevated platforms and ramps, even holding a sensitisation session with the festival’s volunteers.

“We have had this idea for some time and the Pune edition has been wheelchair-friendly,”says Vijay Nair, founder and CEO of Only Much Louder, which organises the festival. “But after speaking to Nipun and a few NGOs in the space, we decided to get a bit more technical. Now, we focus on signage, accessible bathrooms, the height of ramps and how to interact with differently abled people.”

Malhotra says he fights his way through everything. Part of that fight has taken the shape of stand-up comedy. After attending a comedy workshop organised by Anuvab Pal a month ago, Malhotra performed at Delhi’s Akshara Theatre last weekend. Much of his material dwells on people’s reactions to him.

“One of the weirdest questions I get asked is ‘Why are you in a wheelchair’? “I don’t know how to respond to that. Should I say it is because I’m tired of standing?” he asks. “And why is it that when I go to a hospital, people always assume I’m the patient. I’ve even had nurses ask me why I’m out of my room!”

Watch: Nipun talk about life, work and some of the strangest reactions to his disability

The gadget geek from Bangalore

“I’m the only one among my friends who can drink and drive,” jokes Deepa Narasimhan, 30, referring to her battery-powered wheelchair.

Narasimhan is programme manager and head of diversity and inclusion at software company EMC, has spinal muscular atrophy and is also a gadget geek.

Deepa Narasimhan, seen here at the Taj during a trip to Agra last year, has spinal muscular atrophy that has left her with the use of only her wrists and hands. She’s responded by becoming a gadget freak. She also loves to go pubbing with friends and likes to joke, in a nod to her battery-powered wheelchair, that she’s the only one of her friends who can drink and drive.

“I can only use my fingers, so I am always surrounded by gadgets,” she says. “I use Google Glass to take photos, voice-to-text conversion software and Bluetooth speakers for all my calls. But my power wheelchair gets the most attention. Wherever I go, I get questions about mileage, features and battery life.”

Narasimhan loves to party and hang out with friends at restaurants and pubs. “Most of the staff recognise me. I certainly stand out, so they’re very friendly,” she says.

Narasimhan was diagnosed with the degenerative disease at birth and says it took a long time for her to understand and accept what was happening to her body. “I used to get very upset and aggressive,” she says.

A turning point for her came in 2000, when her parents bought her a computer and got a dial-up internet connection. Narasimhan started researching her condition and talking to doctors online.

It was through this research that she was able to move on, express herself in a blog, make virtual friends who faced similar difficulties, and take online courses. She learned HTML, Flash, Photoshop and became a freelance designer, building websites. “I started making a good amount of money and developed a network of clients,” she says.

In 2008, after a four-year search, she was hired as creative lead for marketing and branding at EMC.

“Today, I have a reputation for being the person who can bring about change,” she says.

The travel writer from Mumbai

Sonali Gupta’s day job is as a corporate communications executive but her passions are writing and travel.

She has limb-girdle muscular dystrophy, a degenerative disease, and limps, and sometimes uses a wheelchair.

Online, she is known for her blog Howstraitthegait where she writes about her journey from a young woman who would arrive at dates early and hide her cane to someone who is open and upfront about her disability.

(Sunil Thakkar)

“Earlier, I was in denial about my condition and would hide it from prospective dates. But when I’m honest I find that the men respect me more. Often, they also then open up about something in their lives that affected them deeply.”

Offline, her friends know her as a travel junkie – she’s lived in Spain and travelled to the Caribbean, Turkey, Italy, Morocco, and across India, from Rishikesh to Bangalore, Chennai to Munnar and Kochi.

“I like to keep busy so I have a list of venues for plays, concerts, gigs and other events that are wheelchair-accessible,” she says. Still, she has had more than her fair share of strange experiences.

“One bouncer thought she was too tipsy to admit,” she says, laughing, “because of the way I walk.”

“I get a lot of ‘Car accident, dear?’ or ‘Did you break your leg?’. Most people notice my gait and feel they must either ask a question or offer advice,” she says. “I’ve been told to drink pig’s blood, eat raw garlic every morning, eliminate black from my wardrobe and to avoid eating bananas for the rest of my life!”

The dating game

Sweta Mantrii (centre) pictured here with her cousin and cousin’s husband outside Mysore Palace. Mantrii has spina bifida and walks with crutches and a caliper. She wrote a monologue last year on love, fidelity and disability, which was performed in Mumbai.

First dates are rarely easy. They’re even more uncomfortable for Sweta Mantrii, 28, a content developer from Pune who has spina bifida and walks with crutches and a caliper.

She’s been on dating apps and websites such as Tinder and Inclov for two months and it has been, she says, quite the learning experience.

“I’ve had many good conversations, my share of flirty texts back and forth,” she says. “As soon as I tell the guy about my disability, much to my surprise, most of them don’t stop talking or flirting back. The few who do, I usually see it coming. I’ve been on two dates so far, with two guys, and we may not have clicked romantically but we are good friends now.”

Last year, Mantrii wrote a monologue about love, fidelity and disability, to highlight how differently abled people are commonly stereotyped. “People seem to think we’re so desperate for love that we’ll be ready to do anything. That’s untrue and unfair,” she says.

The monologue was performed by theatre group Dream Stage at Whistling Woods Andheri Base, Mumbai, as part of a Taboo Talk series.

Mantrii loves writing so most her experiences are documented on her blog, Swetamantrii and on her Facebook profile. She writes short stories about love and loss; posts on friendships, learning from mistakes and her experiences at government hospitals or family weddings.

In a piece titled ‘I am no cliche’, she explores the subject of marriage. “I’d want a man who’d marry me for what I am at face value and not because my family is promising him a better future. I’d rather stay happily single for the rest of my life and accomplish all my goals. I’d rather invest my energies in writing a book, cooking for myself and travelling alone; Yes, I can travel alone. And may be, someday I’d adopt a child too. My life is full and I am okay and I refuse to be turned into a cliché. Yes, I am 25. Yes, I am of marriageable age; And yes, I want to get married but I refuse to get married at the cost of my self respect.”

‘People don’t believe I cannot see’

Nidhi Goyal, a Mumbai-based writer, gender and disability rights activist and programme director at the NGO Point of View, is visually impaired but is often confused for a sighted person.

Goyal, 30, was 15 when she was diagnosed with retinitis pigmentosa, a degenerative eye disorder with no cure. She is completely blind but has a mild perception of light. “Since I lost my sight later in life, I have a certain manner of looking at people,” she says. “It’s not that I practice it but when talking to someone, I will look in their direction.”

Nidhi Goyal is a writer and gender rights activist, holds training sessions around the world and has turned some of the everyday prejudices she faces into a stand up comedy act titled, Can you see me now? (Pratham Gokhale/ HT Photo )

This seems to unnerve people, she adds. “They need me to look disabled or rather the popular image of it - cane in hand, walking hesitantly and always asking for help.”

In response, Goyal could tell them about the time she supported both her slightly drunk friends as they stumbled out of a Mumbai restaurant in the wee hours, and got them home safely. Or how she got a friend to teach her to salsa and now shows off her moves at parties.

“At coffee shops, waiters line up behind to watch me take notes and use my laptop,” she says, laughing. “One woman I’d been working with long-distance said she met couldn’t believe the person she’d been emailing all this while couldn’t see.”

On the other hand are people who insist on helping her. “There was a restaurant I visited twice in one week. When placing the order, the waiter said to my male friend, ‘Madame really likes Mexican food. When she came in with that other sir, she ordered it’. What if I’d been there on a date!” she says.

Out of her 48 hour day, some things that Goyal never lets go is her meditation, her work, her family and her friends. On the subject of dating she adds, “It is not about time or work, but I will date when I will.”

Watch: Nidhi Goyal on stand-up, strangers and misconceptions

The budding filmmaker

It is on the weekends that Priti Shetty comes into her element.

During the week, Shetty, 30, is a digital marketing and social media consultant who resides in Mulund. On Saturdays, she changes gears. “I just can’t sit at home doing nothing. So I joined a friend’s company called 9tanki Entertainment and we make short films and documentaries on education, the true meaning of festivals and the city’s unsung heroes,” she says.

Priti Shetty (seated) seen here hosting the sangeet at her brother's wedding two years back. A digital marketing and social media consultant from Mumbai, she has spinal atrophy and uses a wheelchair. She spends her weekends indulging her passion for filmmaking by moonlighting at a friend’s production house, 9tanki Entertainment.

Shetty has spinal cord muscular atrophy and uses a battery-powered wheelchair.

Her job at 9tanki involves auditioning actors, scouting for locations and putting together production and post-production teams. She does most of this online. “For the auditions, I send out the scripts over email and do Skype interviews or ask them to send video files,” she says.

It helps that she has a wide network of friends and acquaintances. “I contact people through social media and WhatsApp groups. If I’ve been to their home or am familiar with the space, I just tell them to send pictures,” she says.

Shetty tries her best to give opportunities to others like her - she has a team of three who help her with her digital work from their own homes. Three years ago, she started the NGO Wills on Wheels Foundation with three others, including her brother who suffers from the same condition. “We conduct awareness programmes and art exhibitions and have participated in a few marathons. We want to show people that being in a wheelchair doesn’t mean you can’t have a life,” she says.

Watch: Priti Shetty discuss her definition of success

The author tweets @djoiiii

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