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Support for the family - including training in physiotherapy - can greatly increase a disabled child‘s quality of life
Read about Community Based Rehabilitation - CBR

Santosh has worms!

Mr. Sanhosh standing in front of his green house
© CBM India
Santosh, 30, inside a poly house nursery supported by CBM’s disability inclusive organic farming project.

Santosh is emerging as an independent and empowered member of his village community thanks to the support and training he has been receiving from the CBM disability inclusive farming project in Gorakhpur, Uttar Pradesh. Not too long back, he was discriminated and isolated from rest of the community due to a genetic condition called Albinism.

Santosh is desperately awaiting Monsoon rains like most farmers in rural India, reeling under the summer heat wave. But for the 30-year-old, the wait is not just for planting vegetables but also for seeing his room-sized greenhouse or poly house come alive with saplings of vegetable plants that he sells.

Santosh lives with his family of five in a house made of mud and bricks, located right at the end of the Barwa Bazar Pasari Tola village in District Kushinagar of Uttar Pradesh. 

Not till very long back he lived isolated from the community due to a genetic condition called Albinism, which is marked by a lack of melanin pigments leading to a very pale skin, hair, and eyes. This condition does not allow him to be exposed to the sun for too long, it also affects him with a low vision.

Stigma and superstition

Santosh with his family members ©CBM India
Santosh with his family
As Santosh shuffles on a broken chair in the open entrance of his house, his wife peeps from the room behind. He is a man of few words and does not like to discuss his condition and peoples’ reaction to it.

His apparent ‘difference’ restricted his access to the external world, which meant his opportunities for earnings were severely limited.

Though Albinism is not officially recognised as a disability in India, yet superstition and lack of awareness about his condition meant that as a child, Santosh was constantly subjected to ridicule and stigma.

He developed a low self-esteem as he could not engage socially without being treated with curiosity or apprehension.

People with Albinism face multiple forms of discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which fosters their marginalisation and social exclusion. This leads to various forms of stigma and discrimination.

In some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk. These beliefs and myths are centuries old and are present in cultural attitudes and practices around the world.

On 18 December 2014, the General Assembly adopted a resolution proclaiming, with effect from 2015, 13 June as International Albinism Awareness Day.

The silver lining

Santhose working in his vermicompost ©CBM India
Santosh uses vermicomposting method of preparing organic manure using worms to breakdown organic waste into compost
The mere mention of organic agriculture and his two-year-old greenhouse brings Santosh to life. The reason for his excitement becomes clear as he makes his way through the small plot of land at the back of his house. 

“I am excited about the training I have received and eager to see how this can be used year after year to grow vegetables and seedlings to increase family income,” he says. 

“When I started creating the compost pit to process organic manure through earthworms, neighbour’s were very skeptical and made fun of us, but that made me even more determined,” adds Santosh standing next to a brick pit covered with decomposing leaves and well protect by branches of lychee trees.

The ‘pit’ provides a chemical free low-cost manure that rebuilds fertility of soil that has become unproductive with years of using chemical fertilisers that are also very expensive.

“I got support for a poly house nursery under the CBM supported disability inclusive agro-enterprises for the organic farming project,” says Santosh, standing at the center of the poly house that is neatly ploughed in anticipation of rains that hit the region in June end.   

CBM has not only supported Santosh with the poly house and construction of composting pit but also provided him extensive training on organic farming techniques, understanding of ways for marketing his produce and reinvesting some of the profit for increasing his earning.

“My son is happy to be engaged in these new techniques and he now feels confident that he has knowledge that others also want to learn from,” says his father Gopal Kushwaha.

Santosh is now reaping the rewards of adopting income generation activities and emerging as a role model for people with disabilities in his village.

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