Shankar Rosatury’s Family Story: Living with Albinism in India
This is a rare story to be found in a country like India, a nation that wants to look fairer. Rosatury’s family of 8 all have the rare genetic condition called Albinism, which causes partial or total lack of the color giving pigment –melanin in the body makes them stand apart from the crowd and society.
Rosatury lives in the J.J (Slum) cluster in New Delhi with his wife and 6 children. 3 boys and 3 girls. The family originally hailing from Salem, Tamilnadu, south India, shifted base to Delhi, around 30 years ago looking for green pastures, but their lives have been full of struggles seen and unseen. Lack of melanin in the eyes and skin causes host of problems socially and personally, people with albinism have low vision upto 60-80% which hinders their daily lives and work profiles, and if you are not financially sound in country like India, life can be tough. Rosaturry works as an office boy earning a meagre 3000 Rs. (nearly 70 pounds). To support a family of 8 is almost impossible when inflation is touching double digits in India.
Married for 29 years to his south Indian wife, Mani, who is 45 years old and speaks very less Hindi. The family has 6 children – Vijay 25, Shankar 24, Renu-23, Deepa-21, Ram Kishan-19, Pooja-18.
Mani’s both parents were pigmented people, that they had typical Indian skin. She faced a lot of difficulties in her childhood, working in the harsh Indian sun in the fields where her parents were paid labourers. She was teased with various names because of her appearance which was different from the dusky, chocolate-coffee tone the south Indians usually have. She has only studied till 5th std. She tells me no particular medical tests were done on her to ascertain what she has or treatment. Lack of education and being from poor background only added to their woes.
It is said in South India if you marry a person with albinism then you are bound to get rich and lucky. Both Rosatury and Mani have lived a hand-to-mouth life throughout. Rosatury found Mani through word of mouth as he also was a person with albinism. Those days children married according to the wishes of the parents and both Rosatury and Mani agreed to their parents’ wishes. It was difficult to find a pigmented person who would marry either of them and that seemed to be the best decision at that point in time. Mani has one more sister who is also a person with albinism. Her mother’s sister was also a person with albinism. Rosatury was the only person with albinism in his family.
Their first child was born and was also a child with albinism. They went through an initial denial and sadness but soon accepted it as a gift of god. Since then they adopted the philosophy that everything in their lives was a gift of god. On being asked why she has such a big brood of children, she tells me that she went for a Hysterectomy operation but the doctors got scared looking at her. So they sent her back. They did not go back again for the same operation. She never anticipated that life could bring so many problems in future for her. People told her not to have many children but they were not cooperative in taking them to doctors or medical care. While thankfully her pregnancies were normal and the family enjoys decent health, the skin of the boys looks aged beyond numbers.
Both Shankar and Vijay look to be in their early 40s, because of lack of skin care. On the advice of the doctor, they put all their children into a blind school, where they have all studied well and are looking to become productive members. They have all learnt through Braille, and at home they use a magnifier to read newspapers. They have to sit very close to the television to watch it. They could only afford a television after 3 years of paying installments. Thankfully the shop owner was kind enough to understand their situation. It is their only source of entertainment. The family has never even gone to the cinema hall.
The family eats everything that is affordable and is within their budget, they are strict vegetarians. They do not have to go for any medical check-ups or testing and apart from a daily dose of sun-screen, they do not do much to protect themselves.
Rosatury has a shop allocated to him from the disability quota from the govt. which is caught under red tapism and debt. He has to pay a total amount of Rs. 35000 (500 pounds) to make that shop functional to authorities. He has been unable to do so for the past so many years and the amount continues to increase every day.
The family took some loan to build their own house in the J.J colony. Since they were unable to pay it back, the landlord has taken up the first floor of the house as his own. Their eldest daughter, who is also married to another person with albinism, did try to look for someone who had tanned skin but was unable to find the match. She has a loving