A couple of years ago, 34-year-old entrepreneur and disability rights activist Nipun Malhotra and his date found themselves getting reprimanded outside the disabled toilet by the staff of a top Delhi hotel. “A guest had probably complained that my date and I were inside together. We were asked what we were up to, though the staff probably knew we were snogging!” Although Malhotra was unsure about how his date felt after being out with a disabled man and caught red-handed outside the toilet of a hotel, it was an episode to remember. “In hindsight, I found the incident funny,” Malhotra says.
Diagnosed with arthrogryposis, a congenital disorder that causes contracture of joints, and bound to a wheelchair, Malhotra admits that most people tend to see him as the face of disability activism, not look beyond it. “I’ve rarely been asked about issues pertaining to dating with a disability. For the most part, people write to me enquiring about work-related opportunities. Perhaps they don’t see me as someone they can go to for advice on dating or hook-ups.”
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While dating is hardly a level playing field in India, persons with disabilities (PWDs) find themselves in a unique spot. For most PWDs, dating in an urban Indian city involves several challenges, starting with finding like-minded individuals through apps, networking events, mixers, and so on. The challenges are steeper when it comes to scoring dates and converting them into anything between a spectrum of a one-night stand to a long-term relationship because of lack of inclusive spaces, accessibility and equal opportunities. The impediments are as worse for those with invisible disabilities.
Every situation is an opportunity
A genetic blood disorder that affects the production of red blood cells, Thalassemia qualifies as an invisible disability that was mostly unknown in India till the 1980s. Shobha Tuli, for instance, secretary of Thalassemics India, was asked by her doctor to plan another child in the 1970s during her consultation for her Thalassaemic Major child. “The doctor could not offer any hope,” she says. In the last four decades, a collective effort by the medical fraternity, government officials, NGOs, parents and families of Thalassaemic Major individuals in India has resulted in getting the disease listed as a “disability” in 2016. This has also mobilized conversations around the lives of adult Thalassamics in the country.
“Thalassemics India organizes conferences every four years and takes children abroad to international meets. They have been to Italy, Singapore, Cyprus, among other countries,” says Tuli. “The idea is to ensure networking opportunities and make them feel confident in their skin.” Malhotra, who’s single and casually dating in NCR, agrees that conferences are typically a good place to meet others and get to know them.
Pathankot-based Danish Mahajan, 33, who is co-founder of Radio Udaan, a community radio run by persons with visual disabilities, points out that dating isn’t always the biggest hurdle. “People forge friendships with the disabled and turn them into a relationship. The trouble begins when the disabled person wants to make that into a marriage,” he says. “That’s usually when the able-bodied partner seeks an exit.” He mentions “family pressure” as a common excuse that latter give while breaking up.
Since 2018, Mahajan and volunteers of Radio Udaan have organised “get-togethers” for the visually disabled across Indian metros. “In pre-covid times, we would host an event in one city and people from all over would travel to participate. Since covid, meetings are arranged via Zoom, and are free for all to attend”. Mahajan has introduced people within the community to each other and many have successfully turned friendships into marriages. “I am personally responsible for arranging marriages between 12 couples,” he says.
But is marriage the answer?
Preeti Monga, 67, a trailblazer empowering visually disabled girls and women at her Delhi NGO Silver Linings, responds with a resounding no to the question above. “Most visually disabled girls are looked down on as a liability. They are hardly sent out to get an education and even if they are educated, you don’t see them working in offices,” she says. “They are deprived of contact with the outside world and are sexually curious and repressed, which leads to these women to becoming easy targets for abusive men. Some are molested, others raped, and disowned by their families.”
Monga, who herself is visually disabled and has worked in the field for nearly 30 years, paints a grim picture of society’s attitude towards dating among PWDs. “In rural areas to this day, I see families marrying off their able-bodied daughter to a man and sending their disabled daughter as a free commodity. The husband is allowed to do whatever he seeks with the disabled sister.”
Monga organizes mixers and allows admission on one condition—if you’re disabled, you must bring an able-bodied person along, and vice versa. “I ensure the ratio between disabled and able-bodied attendees is always 50-50. Everyone is encouraged to talk and mingle, which helps the able-bodied folks to learn how to be more inclusive with the disabled in their day to day lives.” The connections forged here have lasted and those who have met at these mixers now frequently plan group hangs, travel together, and keep in touch regularly.
It’s hard to disrupt the status quo. Rituparna Borah, 40, co-founder and co-director of Nazariya: A Queer Feminist Resource Group, mentions the flaws in the “system” in the queer community when it comes to dating and marriage. “Since the issues with invisible disability remain ‘unseen’, society at large assumes and conceives notions about overall well-being, including sexual health,” she says. “I’ve had a partner leave me because they believed I was lying about my invisible conditions. I was blamed for not being into them sexually when I was struggling with my health physically and mentally.”
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The WHO estimates more than 1 billion people in the world are living with disabilities. In India, the population of PwDs is 26.8 million and, like most other countries in the world, individuals living with invisible chronic health conditions are not listed within this data.
Borah identifies as indigenous, disabled, cis, queer woman with chronic health conditions, including fibromyalgia, posterior tibial tendon dysfunction, and bipolar disorder. Fibromyalgia is not recognized as a disability by the government in India. The condition is not talked about at large and the concerns remain unaddressed. “Even within the queer community, the idea of networking or mixers include going out to parties and drinking, when persons with disability, including me, cannot drink because of our medicines and cannot stay out,” Borah says. “The dating space is limited for queer women, and queer women with disabilities suffer more since there are hardly any spaces to host them.”
Even in the cities, dating apps rarely cater to the needs of the disabled. Tinder, Hinge, Bumble and most other apps work on the principle of swiping on the basis of physical attractiveness. Founded by Kalyani Khona in 2014, Inclov from India was the world’s first matchmaking app focused on inclusivity, catering to persons with and without disabilities. They organized offline events, which had a positive impact on PwDs, but the app shut shop in 2019 leaving, once again, a vacuum in the digital dating space.
Changing landscape
At 14, a mysterious illness plagued Virali Modi and put her in coma for 23 days. “I was pronounced dead thrice,” she says. When she finally came to, she was paralysed neck down. After spending nearly 15 years in a wheelchair, Modi, now 30, identifies as a “body positivity and lifestyle influencer” and promotes debates and discourses on sexual wellness. The emphasis of her outreach is largely on inclusivity by dismantling taboos and notions around the bodies of persons with disabilities.
“The idea is for society to look at us and accept that it has made us ‘disabled’ by not including us,” she says. An incident of sexual harassment at a railway station in Mumbai triggered Modi to encourage able-bodied individuals to be more inclusive towards persons with disabilities and not look at them as either “incapable of being sexual beings” or as “sex objects”. “I openly talk about sex and try to clear the noise around all the inspiration porn being peddled around those who are disabled,” Modi says about her work on Instagram.
Having been in relationships in the past, she uses examples from her life and turns them into thinking heads for her content. Her videos are candid with tongue-in-cheek humour. In one, she comes clean on how an ex-boyfriend’s family flagged the issue to him: “How will you have sex?” To which she responds, “Is sex only possible when you’re standing on your feet?”
Likewise, Vaishnevi, a 24-year-old make-up artist and theatre practitioner with Thalassemia Major, wants not to be reduced to her “disability status”. Despite living with an invisible condition, she has always been forthcoming about it with her exes. They have been supportive, even accompanied her to the hospital during the blood transfusions. But she does not want to be a liability.
“After I turned 18, I didn’t allow my parents to come with me to the hospital and went on my own. It is important to me that I don’t burden people, which gets to me when I seek a partner on dating apps,” she says.
Managing a chronic condition while being open and honest with a partner is tricky business but not impossible to navigate. Borah says when her current partner was moving in with her before the lockdown in March 2020, she was concerned about how she would react to her chronic illness. “She took it well and even though I had past trauma about living with someone who had been less than kind to my condition, my partner made me comfortable at all times and accepted me for who I am.”
Anisha Saigal is an entertainment and culture writer and researcher from New Delhi.
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