Albinism is a congenital disorder characterised by the lack of melanin and low vision in later stages. It is one of the less known diseases and there are a lot of myths associated with it. Impactpreneurs had an exclusive talk with Mr. Anubhav Gupta, Director of Jeevan Trust who is working for the benefit of marginalized communities like albinos, transgenders etc. Edited Excerpt:
When and how did you sow the seed of your venture?
After completing my Masters in Media from MCRC, Jamia Millia Islamia, I had worked with newspapers. During this stint, my association with communities was limited to the time I had to cover their story. But I wanted to engage much more deeply with the communities. Hence, I initiated Jeevan Trust in 2010 to reform the lives of the marginalized communities through art and media. Within one week of its inception, 11 albinos visited the NGO.We are also supported by foreign organizations not through funding but by giving space to our work in their journals.
What is the mission of the NGO?
To pitch the voice of the marginalized communities like albinos and transgenders through art and media.
Why the name, Jeevan Trust?
Everybody deserves a good Jeevan (life). Jeevan Trust believes in the celebration of life.
What are the myths related to albinism which you want to break?
People often confuse albinism with leucoderma. Moreover, albinos are often considered to have low IQ which is definitely not true. This disease is not at all contagious. We have even heard that people believe that fish over milk causes albinism. Also, people in South India believe that marrying an albino girl brings fortune. In India and Tanzania albinos are kidnapped for their body parts for witchcraft. In last 15 years, about 200 albinos died in Kenya and Tanzania.
What kind of support/training is provided to the transgenders?
Till now, we have just come up with the music album, Songs of the Caravan The music album consists of 9 transgender women among which 6 have degrees in music. Many a time, transgenders are not given admissions in regular music schools. Therefore, we are looking forward to developing a music school for the transgenders so as to bring more talented people in light, generate a source of income for them. Of course, we will definitely look for other kind of programmes too to help them.
How did the idea of the “Songs of the Caravan” occur to the NGO? What response did the song get from the people?
Through the album, we are trying to preserve the singing heritage of the transgenders and are making them an active citizen. Apart from UNDP, we were funded by PlanetRomeo Foundation (Netherlands-based NGO which works for LGBT people) with INR 3.5 lakhs for the release of the song. We have been covered by more than 60 newspapers and websites. We were given covered by BBC. Apart from that, we have a space in Limca Book of Records. After our album, Yash Raj Films launched their own first transgender band.
How you came in contact with UNDP? How have they helped Jeevan Trust?
We were working on the project “Songs of the Caravan” which was supposed to be the first album by transgender women in India. It took us 17 months to prepare the album.We needed funds to launch it but we could not get investor interest in it. Hence, we got in touch with UNDP and they funded us with INR 1.5 lakhs. This enabled us to release our album.
How people with albinism and transgenders go along with each other at the NGO?
Everybody is respectful towards each other. There is no sense of the difference between each other.
Could you please bring light on your workshops?
We conduct workshops at the school level to enlighten the young generation about the myths in the society. Till now, we have received positive feedback from them. We do get the invitations from across the country to conduct the workshops but due to lack of fund, we cannot go there. Hence, we send our presentations to them.
Tell us about the first obstacle you faced and how you overcame that obstacle?
Funding has been a major issue. Many times, I fund the NGO myself. Apart from that, people remarked on the album that who is going to buy it. To which I asked them to buy it.
What impact has been created so far and what do you want to achieve?
Albinos are coming together and discussing their issues. We are reaching out to albinos across India. We are even in touch with albinos in Nepal and Pakistan. We are creating awareness about albinism that it occurs in animals and plants also. We have also helped Onir, Bollywood director who is making a film on albinism with research.
We do not want to limit ourselves to albinism and transgender issues, we are looking up to bring various disabilities in limelight. We are also looking forward to release PDF version, free books, photo essays and documentaries related to such disabilities in one go.
What message you want to convey to the society through our platform? How could other people help in your organisation’s mission?
We want a world where there is equality for all, a discrimination-free world. Hence, we have come up with a platform through which we are trying to create awareness not only about albinism and transgenders but also other marginalized sectors. So, we are striving to create the database for the same.
People can help us through advocacy, outreach, fund, sponsors etc so that the next World Albinism Awareness Day (13th June) we can do our best.
Picture Credits: Anubhav Gupta, Director of Jeevan Trust