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MADANAYAKANAHALLI Grappling with Reality 'Cursed' with webbed hands a family of over 70 members suffers in silence. By Stephen David
Eking out a living under the circumstances is not easy. With no option but to work as labourers, the Hussains have reconciled themselves to living in poverty. And in pain. Not just the pain that results from the load their impaired hands try to cope with but also the pain of societal rejection. "We are treated like lepers wherever we go," says Sheikh Hussain's wife Mariam Bi. "But what can we do about it?" Such stoicism is not uncommon in the family. Despite the odds, the Hussains believe they have been ordained to live through abjection. According to the local legend, one of their ancestors was murdered by her brother as he suspected her of having an illicit relationship. The woman, who was innocent, is said to have gone down on her knees before her head was severed and with her hands open prayed to Allah to curse the brother's offspring with deformed hands for seven generations. By accepting the deprived state, goes the belief, these generations could absolve themselves of the family sin. "God will bless us if we go through the period of the curse, otherwise it's a bad omen," says Sheikh Hussain. So deeply rooted is superstition that the Hussains have baulked at the few suggestions of medical help that have come their way. The problem can be rectified and a surgeon once offered to operate on them free of cost. But a village priest curtly told him that "Allah will not like it". There are also stories about how a child with webbed hands died when operated upon some 50 years ago. The curious recurrence of the deformity in successive generations has -- rather belatedly -- drawn the attention of some doctors and researchers. One geneticist, Pragna Patel -- after much persuasion -- recently managed to gather their blood samples and X-rays which have now been sent to the US for investigation. The Jawaharlal Nehru Centre for Advanced Scientific Research, near Bangalore, is also planning to undertake a programme to study the disorder. The researchers find that part of the problem is because the Hussains marry within the family. "Webbed hands are not unusual," says Sharat Chandra, professor of human genetics at the Bangalore-based Indian Institute of Science who plans to visit the village shortly. "The high frequency of the syndrome in one village is what is baffling. These people at Madanayakanahalli seem to be marrying among themselves." Consanguinity, maintain the Hussains, is something they can hardly help. They point to 19-year-old Ameena whose parents have been running from pillar to post to get a match for her. But as always none outside the family is willing to marry the girl. This being the case, the Hussains are left with no choice but to find their brides and grooms from within their own family. Social stigma manifests itself in other ways. The state Government too has hardly done anything that could better the lot of the Hussains. The lack of job opportunities apart they have to make do with mud houses that threaten to collapse every time there's a heavy downpour. "Everybody shuns us," says 62-year-old Mehboob. "We are not even given ration cards. They ask for money but where can we get it from?" Deprivation may be something the illiterate Hussains have gotten used to. It may even go with their belief that they must pay back for their ancestor's sins. But the fact is beneath that veneer is the human craving for a normal life. If only society would take notice and enable the Hussains to have a grip on their lives. |
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Finding a job has always been difficult
for Sheikh Hussain. Ever since he can remember, the 50-year-old has been turned away by
prospective employers. Just like his father. His son. And his 70-odd relatives at
Madanayakanahalli, near Bangalore. Reason? Call it a hereditary disorder or a quirk of
fate, they all have webbed hands -- a condition where the fingers are joined together by a
piece of skin. 
