We’ve often heard of successful inter-faith and inter-caste love stories, but the experiences of another marginalised community have been ignored for far too long. Indians with albinism—a rare and inherited genetic condition that causes the skin, hair and eyes to have almost no colour—are frequent targets of discrimination.
The country’s approximately one-lakh-strong albinism community cope with vision loss and increased risk of skin cancer as well as the struggle to find open-minded partners to date or marry, even as they live in a country obsessed with fairness.
“My parents weren’t worried, but they didn’t know much about the problems with albinism other than vision loss,” says Ambanee Garg, 29, a dietician from Agra. People with albinism often face bullying in schools and workplaces and have low confidence, which impacts one’s mental health, she explains. “People make rude jokes. A classmate once and said, ‘We have to see foreigners even on Independence Day’,” she recalls.
Kolkata-based homemaker Tapasi Dey, 32, recalls being mistreated in school, and separated from peers because other ill-informed parents were worried about albinism being contagious.
Ambanee’s husband Varun Garg, 30, a businessman, who was also diagnosed with the condition, says that such discrimination can lead to an internalisation of anti-albinism. “I did not get any encouragement from relatives. So initially I didn't want to marry a person with albinism because I wasn't proud of myself,” he says.
Love and relationships are sensitive topics for Indians with this condition. When describing his dating life as someone with albinism, Mumbai voice-over artist Rakshit Doshi, 39, says the chances of finding a companion can be slim. Digital marketer Bhakti Talati, 34, agrees and says that when her parents began looking for matches, her genetic condition became an additional filter. “On matrimonial sites, you sometimes have to put albinism down as a handicap,” she adds.
Ajmer banking executive Somesh Jain, 35, says that anti-albinism stems from low levels of awareness. He says that this ignorance has led parents of potential matrimonial matches to reject him.
Several people with albinism admitted that plans for marriage fell through once they revealed their condition. Indore-based professor Twinkle Singh Bais, 29, says, “It’s happened many times. People say we can’t be together because the parents won’t agree or because our children may have future health problems.”
Deepak Ratan, 42, a corporate professional in Delhi, is also concerned that his six-year-old son with albinism may encounter similar hurdles when he has to contemplate marriage. “Some people in the community have even suggested a separate dating site for people with albinism,” says Deepak.
Kashmir University student Salman Bhat, 19, is one of many with albinism who say that online platforms are lifelines for the community. After receiving most of the information on his condition from his smartphone, Salman now frequently participates in Zoom seminars by Voice of Albinism, a UK-based organisation that aims to create awareness about the condition.
Tapasi concurs about the benefits of social media. She says she met the “first and only love of her life”—her husband Chandrasekar, 38,— on a Facebook group created by Jeevan Trust, a Delhi-based non-profit headed by Anubhav Gupta that works to promote the welfare of people with albinism.
Both Tapasi and Chandrasekar have albinism, and she says that the real proof of her husband’s love is in his attention to her unspoken needs. He nursed her back to health during when she had dengue and gallbladder surgery, back-to-back.
“I know that she may have trouble seeing while crossing the road so I always hold her hand to guide her,” says Chandrasekar whose vision is better than his wife’s. His effort to downplay Tapasi’s praise backfires because she says, “See? He anticipates my needs before I even have the chance to say something.”
Somesh also met his wife Nidhi Garg (32) via Facebook, and both have albinism. “Nidhi is a source of great support. If I’m in a bad mood and see her face, I immediately feel calm and know things will be alright,” he says.
While some worry that both spouses having albinism can work to their disadvantage, a common health condition can create a sacred bond between the couple. Twinkle, whose husband Lokendra Singh Bais, 30, has also been diagnosed with albinism, says they understand each other perfectly. “Lokendra knows I don’t really cook because of the heat exposure and potential to get burns. So he takes it upon himself to cook for us,” she says.
As someone whose partner doesn’t have albinism, Rakshit has always been transparent about his symptoms with wife Meghana, 38. The couple credit their 12-year-long marriage to the friendship they built as colleagues. Rakshit is grateful for Meghana’s inquisitive nature because it made albinism-related conversations easier. “When people see how happy I am with him, they know that none of it matters,” Meghana declares.
India’s albinism community clearly has no dearth of romance and spice. Deeper in this network exists another kind of love that doesn’t often get its due — friendship.
Ambanee says one of the best ways to help a person with albinism feel confident is to create a positive atmosphere for them. Online initiatives spearheaded by Jeevan Trust have carved out these safe spaces.
The Indian albinism community is often viewed through the lens of suffering. But its members want to dispel such misconceptions and show how full their lives are. They’ve found support in parents who advocate for them, camaraderie in friends who don’t treat them differently, and partners who adore them. But their greatest triumph in love is being comfortable in their own skin.