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Our journey of mainstreaming albinism in India - My Take by Anubhav Gupta, co-founder, Jeevan Trust

13 June is marked as International Albinism Awareness Day. In My Take this week, Anubhav Gupta co-founder of Jeevan Trust talk about the organization's efforts to fight the wrong notions and stigma that people with albinism face in India.

India has the world's second largest population of people living with albinism. The global standard of one in 17,000 people being born with albinism translates into some 79,000 people living with albinism in India, although this seems to be far less than actual numbers.

Our organization, Jeevan Trust, was started in 2010 with an aim to address issues that needed mainstreaming with the help of art and media. I remember seeing a young girl with albinism at a family function in my childhood and the memory of this distinct looking person stuck with me. I would then chance encounter with similarly distinct looking people once in a blue moon in local transport.

After finishing my post-graduation, I knew I wanted to work on albinism. I wanted to bring together my years of experience in media and the cause together at one single platform and thus began my search for the same. Thanks to the age of the Internet, connecting with organizations and people across the world was easy and soon a Facebook page was also created. The more I read about albinism the more I got interested in working on this condition.

As I began my work I found seven people with albinism in one week and that confirmed my resolution. I would grab people walking with friends, in malls, at metro platforms and elsewhere and I would politely introduce the concept and work. Most were very keen to join and I would find them on Facebook sooner or later. Some said no as they did not want to know anyone from the community and I would respect that. We still do.

During one such chase I came across Mr. Sameer Garg. He was at a mall with friends when I walked over to him. He he was quite keen to listen, but his friends told him to move on. Luckily, he did come home the next day and the rest is history. This whole work of the last seven years has materialized because Sameer put his heart into it.

Sameer soon became officially a part of the trust and helped make the society what it is today. I have seen Sameer closely grow into a young and confident man with purpose and character who has handled the pressures of life extremely well and has maintained a jovial and cordial outlook always.

Once our basic team was in place, we wanted to reach out to schools for workshops on albinism. The aim was to create schools that were aware about the condition, as most children with albinism had it a little tough in school. Other kids and teachers are not aware and have very little, or no time in hand, to deal with them at a personal level. I remember sitting outside a principal's office for for days to get an appointment for our first workshop.

The workshops that we did were hugely successful. Sameer spoke extremely well and everyone wanted to connect with him. By the end of it people were telling us how it has changed their mindset. The teachers and the principal too were very happy. Our workshops gave an overall scenario of albinism in India and the world, the social issues, the challenges and the positives. The road ahead is mapped out in the presentations. Some amazing animals living with albinism across the globe and the significance and representation of white animals in Indian spirituality also featured in our presentation to make it more interesting for kids.

We received a similar feedback from our workshops held at media institutes where we sensitized them about responsible reporting regarding the condition. We familiarized them with the terminology. Soon as word began to spread, we started getting calls from all across India for counselling, workshops, and assistance. Although pressed for funds, we have always tried to reach out in all circumstances possible.

Cases of discrimination in colleges, like when a young woman girl was made to sign an affidavit forgoing the college's responsibility to get her a job, or from a senior year college student being harassed by his seniors…to getting rejected in love…finding a job…we have seen the struggle and spirit of people living with albinism up close.

It was also wonderful to discover people with albinism being able to drive, hold high positions in government, hold jobs, manage businesses, sing, invent, discover, and create in the last seven years in all forms of life. People around us have a lot of misconceptions about them. The most common one being its Leucoderma, which is another skin condition that leads to loss of pigment in patches from skin. People also often have raised doubts about their intelligence, lifespan, but all this is based in ignorance.

I do believe that a certain sense of isolation and loneliness exists in some, if not all, which people with albinism need to make efforts to come out of. Once we reached out to a very senior journalist with albinism to associate with us. She refused flatly saying she was never helped in her childhood so she has no interest to help others.

From finding partners in India, Nepal, Pakistan and Sri Lanka, to making friends and reaching out to the United Nations, celebrities are now aware of our work. We get substantial coverage on social media as well. Personally, the stories of success have given me immense satisfaction. We have faced challenges of perception for our work, both from within and outside the community, but we are here.

Many people are curious as to why I, being a person without albinism, would work on this issue. We may not have been able to raise a lot of money, but we have managed to pool our resources to help people with albinism in India and in Nepal in times of crisis. The corporates have not shown much interest, perhaps because the target group is too small and scattered for them. But we are here, and we are here to stay.

We believe our work will go a long way not only to make lives of people with albinism easier but also encourage people with other disabilities to come forward and create similar support groups in the long run.

Anubhav Gupta can be reached at aries_anubhav@hotmail.com

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