By Swati Verma:
It was in the winter of 2005 that I first saw Suraj. With his almost translucent skin, hair as white as freshly fallen snow and a curious absence of colour from his skin; it was hard to believe he wasn’t a doll. That day in the hands of a visibly ‘dark’ vegetable vendor we had grown up calling “Virender Uncle”, I saw him; an albino baby. He had come over to seek medical help in our colony meant for government doctors.
The case of albinism in India is a curious one. In a country obsessed with fair skin we see an inapposite reaction to people with this condition. Albinism is an extremely rare condition with about 100 thousand to 200 thousand such cases in India. It often renders such individuals hypersensitive to sun rays besides making their appearance look ‘foreign’.
Albinism in humans (from the Latin albus, ‘white’) is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of tyrosinase, a copper-containing enzyme involved in the production of melanin.
Due to their ethereal appearance, people with albinism have been mistreated for centuries. They’ve been perceived as mythical beings in countries like Tanzania, and witch-doctors have murdered them for their body parts, believing them to have magical properties. There have also been cases of albino women being raped in Zimbabwe, because of a false theory that sex with them can cure a man of HIV.
‘Children of the Moon’ is a story of two albinos. Faizan and Suraj are inadvertently similar to each other in appearance but there are miles of difference in their condition; both physically and psychologically.
Faizan comes from a business family living in Delhi’s Sadar Bazaar with seven brothers and his parents. Currently studying in Jamia University to become a physiotherapist; he has a really outgoing personality.
He does not fit the stereotypical image of an albino at all, if at all there is one. Faizan is the class representative of his batch and is surrounded by people perpetually. The ability to understand his body and the timely intervention of his parents has helped him tremendously to reach where he is today – the first person of his family to take up higher studies.
However, Faizan is an exception in a sea of albino kids born to relatively poor families. With no dedicated NGO’s to help families and members of albinos in the national capital region itself, one can only imagine the condition in the other parts of the country. Quite a few times the obvious difference in appearance alienates the albino kid from the family and the community. In cases where the causes of albinism are unknown, there are cases of people giving in to superstition and myths to find a ‘cure’ for something that is purely a genetic trait – and not a disease.