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“The government hospital gives me pills for my disease. I help my family sell fried snacks”

Sickle cell disease (SCD), an inherited blood disorder, is endemic to India’s adivasi population. It appears as though Sapnaben Arvindbhai (24) from Dumali village in Gujarat’s Chhota Udaipur district has been fortunate enough to escape the worst symptoms of SCD, which include periodic episodes of extreme pain, and anaemia that requires blood transfusions.
 
Sapna is one among the four daughters of Arvindbhai (49) and his wife Savitaben (47) who belong to the Rathwa tribe. On the walls of Rathwa houses one might find Pithora art, the ritualistic paintings of the Rathwa and Bhil tribes, often showcased in crafts museums. But this particular Rathwa house shows no signs of it, for it is built of clay bricks left bare and unplastered. The family makes ends meet by growing corn and rice that Arvind sells at the local market. When our interviewer asked him whether he knew of the Bhasha Centre for Research and Publication in Tejgadh he said they live just two miles away from it. (The Adivasi Academy is the Centre’s signature project.)
 
Sapna, like her sisters, went walking to school in Tejgadh. “She failed the 10th Standard exams,” says Arvind. “She tried twice but could not pass. So she stopped studying.” Sapna’s health did not cause undue concern – she was thin and occasionally tired – and it was only before her marriage to Mayur at around age 20 that they got her blood work done in Tejgadh and discovered she had SCD. She has been on medication since. “She has to take pills,” says Arvind. “We get it from the government hospital. We go and get one month’s supply of medicines.”
 
To supplement their income from farming the family operates a small shop from a portion of their house, making and selling bhajiyas (pakodas) and samosas. While Mayur is a contract labourer, Sapna manages the shop. Everyone pitches in to share the workload, whether it’s farming or selling fried snacks.
 
“We will get one of my daughters married this year,” Arvind muses. Sapna’s elder sister Vilashben (30) was married but got divorced and now lives with the family. The youngest daughter is in 11th Standard and has chosen the Arts stream.