World Albinism Awareness Day 2017: How two men are working towards changing perceptions about albinism in India

Equal treatment, not sympathy is what people with Albinism need.

By: Sandhya Raghavan | | Updated: June 13, 2017 5:57 pm

Sometimes, it only takes a moment’s reflection to finding your true purpose in life. For Anubhav Gupta, it was the sight of an albino girl from his childhood. The image of the light-skinned girl with her fair hair seared into his young mind like a red-hot brand, and that’s when the seed of Jeevan Trust’s inception was sown. The 34-year-old media professional went on to set up the Delhi-based organisation Jeevan Trust in 2010 to raise awareness about albinism and to promote the well-being of people afflicted by the condition. Also Read - 4 foods that can trigger rosacea

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Albinism is characterised by impaired melanin production that results in little or no colour in the skin, hair or the irises. People with albinism keep their skin and eyes protected from the sun at all times because they lack the melanin that wards off harmful UV rays. Although it is a rare genetic condition, most Indians are aware of albinism. “But they mostly confuse it with leukoderma or vitiligo,” says Anubhav. At Jeevan Trust, he uses his experience as a media professional to harness various media platforms to create awareness and reach out to the one lakh people in India who are suffering from albinism. Also Read - Follow these tips to remove dust particles from your eyes

A cause close to the heart

“Why albinism?” I asked. I found it intriguing for a person who isn’t afflicted with the condition to take up the cause. “I guess I always have been socially inclined,” says Anubhav who has worked for the CSR arm of PVR Cinemas before. “People with albinism are treated badly in our country. Parents of albino children themselves are clueless about the condition. These kids also go through a lot of ordeals in school because even the teaching staff are not equipped to deal with albino children and their special needs.”

Sameer Garg, Anubhav’s partner and Vice President of the Jeevan Trust knows exactly what this ordeal feels like. Being a person with albinism, Sameer recounts an incident in his childhood that speaks volumes about how Indians are ill-equipped to deal with people with special needs. “It was during my exams. Being albino, I had vision problems and couldn’t read the fine print. I turned to the person sitting next to me, hoping he would help me out. The examiner saw this and immediately started reprimanding me,” says Sameer. “He hurled a lot of hurtful words, accusing me of copying during the exam. He also went so far as to say people like me are better off sitting at a shop and have nothing much to contribute towards the society.”

Call it dramatic justice, today Sameer is a school teacher himself. His foray into teaching and his association with Jeevan Trust were both born out of his experience growing up in a society that was hostile towards the differently abled. “After I met Anubhav, things changed. Today I am no longer the shy, reticent person I used to be. He has instilled in me, the confidence to be myself and fight for what is right,” says Sameer. Anubhav also doesn’t hold back on the praises for Sameer: “He is a superb guy! I was the one who approached him with the idea for Jeevan Trust, and today it is because of him that we have grown so much.”

Making a big impact

In seven years, “We have reached out to so many people all over the country. We have carried out workshops in schools, media institutes to create a sensitive environment for the people with albinism,” says Anubhav.

The Trust also conducts awareness meetups about skin and eye care, and counsels parents whose child has albinism. “We also connect with people who have suicidal thoughts. Through counselling, we instil courage and self-worth into them,” says Sameer. “There was a case where an albino boy in Gujarat was bullied by his classmates.” We contacted the school authorities and made sure strict action was taken against such practices,” adds Anubhav.

“Recently, we helped the 10-member family from Tamil Nadu. All the family members are albinos,” adds Anubhav. Shankar the 24-year-old son of Mani Pullan, the patriarch, was gifted a laptop by the Jeevan Trust. The trust has also helped people acquire financial stability, by helping them set up poultry farms. And now with the United Nations’ supporting their good work, there is no looking back from the Jeevan Trust.

The challenges that lay ahead

We Indians sure are an entitled lot; We cry racism when one of our own is treated badly in a foreign land. But back home, we don’t mind rebuking someone over his or her skin colour. We don’t even spare those with albinism.

“Indians believe that albinism is caused by eating fish with milk. They think they have low IQs and impaired lifespan and think albinism is contagious. People with albinism are used to being called ‘andha budhia’ or ‘andha buddha’ because of their fair-coloured irises and light hair,” says Anubhav.

Sameer himself has been at the receiving end of such barbs. His wry sense of humour becomes evident when he narrates such incidents: “Once on a visit to Dhyan Kund, some people approached me saying they wanted to click a picture with me. My friend said at once, ‘Hundred rupees per picture!'” he says with a chuckle. “Some parents of the children I teach visited the principal’s office and started thanking him for hiring me. They were impressed that the school had been bringing in international faculty for the students,” he laughs.

Changing mindsets

“Although there is no social ostracism, people are insensitive towards them. There is a lot of loneliness in the community. They are usually shy but open up when they meet others like them.” says Anubhav. And that’s where Jeevan Trust comes in. It provides a platform for people with albinism to meet and mingle with others like them. Marriages among them are common. “But it is relatively easier for albino men to find companions than for the women,” sighs Anubhav.

Sameer who fell in love and got married to his co-worker in February 2017 says things were uphill for him in the beginning. “I had a hard time convincing her family that there was nothing to worry about. Their biggest concern was ‘What will happen to your coming generation?'” he says. “I told them that it is a chance we are willing to take. And slowly, they accepted me, and now things are fine.”

“Changing mindsets is not easy. We cannot change the way people think, ” says Sameer poignantly. “But we will try our level best to make them understand that albinism is not a disability. It is not a tough problem. It is not your sympathy that we need, but equal treatment. Teachers should know that if there is an albino child in the class, he or she needs your empathy. Give him the confidence he needs to come up in life instead of pulling him down and treating him differently,” he pours his heart out.

“I have heard of doctors telling albino people that if they studied and read like the others, they are sure to turn blind in no time,” he says wryly.

Raring to go!

With this formidable duo at the helm, Jeevan Trust is poised to break new grounds in social welfare. In the seven years of its existence, the NGO has done substantial work and reached out to numerous people with special needs.

Under Anubhav and Sameer’s able leadership, Jeevan Trust has fanned out and has been addressing issues of social and environmental importance. Changing public mindset about transgenders is another project that is close to both their hearts. It is also looking towards helping people with muscular dystrophy and dwarfism.

“We started with a team of two, and today we are close to three hundred,” Sameer beams proudly.

Read: 9 facts about albinism

Image source: Anubhav Gupta and Sameer Garg

Published : June 13, 2017 1:58 pm | Updated:June 13, 2017 5:57 pm

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