Hanumayamma was 13 when she was diagnosed with leprosy . Afraid that they would be ostracised at their village, Obulesunipalle, in Guntur district, her family took her to a colony for the leprosy-afflicted at Bapatla, 140 km away and left her to fend for herself. Though there was a school there, Hanumayamma preferred to join the adults and beg.
At 65, Hanumayamma is married to Daniyelu, five years older than her and her companion for 47 years. She met him during her trips to the hospital. Daniyelu helped with the chores and because he did not have visible deformities, took up odd jobs outside the colony. He took care of her.
By the time of her marriage in 1970, Hanumayamma had lost her fingers and toes to the disease. Over five decades, her legs were reduced to stumps. She and her husband now live at the Jesus Grace Leprosy Colony opposite the Vijayawada International Airport. They were relocated there by an NGO, which also offered monthly rations in 1997.
The NGO subsequently wound up, and the couple had to beg full-time. At about the same time, the government gave them pension and rations because they had a permanent colony address. While she gets a pension of ₹1,500 a month due to 100% disability, Daniyelu gets only ₹1,000 because his disability is 50%.
The Andhra Pradesh Government gives a ration of an additional 20 kg rice for the leprosy-affected. (Five kg per head for those below the poverty line.) But for four months now, Daniyelu has been bedridden from a back injury and cannot go to the ration shop.
When Hanumayamma went there, she was told that the rice could not be given to her. Reason: She did not have thumbs or fingers for the fingerprint scanner to read.
The Andhra Pradesh Government introduced biometric authentication linked to Aadhaar for the distribution of commodities. Since October 2015 all data is used for tracking and prevention of pilferage.
But since then, the leprosy-affected have had trouble getting their rations. Unfortunately, even the iris scanners do not work for them. According to the World Health Organisation Leprosy affects the skin, the peripheral nerves, mucosal surfaces of the upper respiratory tract, and eyes.
Even for those who are cured, ulcers form. The wear and tear is more because neuropathy reduces sensation.
The story is the same for the monthly pension. Government staff come to the colony, but they use fingerprint scanners and people like Hanumayamma do not get the money. She had to open a bank account and the money is now deposited in it.
“I had a difficult time opening a bank account. But then the bank authorities allowed me to open one with the impression of my hand,” she said.
“For centuries the leprosy-affected have been ostracised. After independence they have been confined to colonies. Now this digital ostracism,” said M. Radhika, a social worker.
Andhra Pradesh Society of Leprosy Affected People (SLAP) President Alladi Chandra Sekhar said that getting rations from fair-price shops was a challenge, more so for those in colonies. There are 45 colonies in AP with 1,520 inmates, SLAP said. There are nine more colonies provided for by missionaries. While one has only three people, the Bapatla colony has 244. The Association of Leprosy Affected People (ALAP) president V.Narsappa said there are 800 colonies in the country with 1.5 lakh residents.
Mr. Sekhar, who was diagnosed with leprosy in his teens has lost all his fingers. Her met Sravani Papa at the leprosy hospital and they married. He depends on Sravani to fetch the monthly ration. If the person who normally gets the ration is indisposed or out of station, the family has to forgo supplies that month, he said.
SLAP represented to Civil Supplies Minister Paritala Sunitha who gave oral instructions, but nothing has happened because her portfolio was changed, Mr. Shekar said.
Leprosy Department Joint Director P. Rajendra Prasad who coordinates between 13 District Leprosy Officers (DLO) said the problem had been brought to his notice.
The District Rural Development Agency the nodal agency was working out a solution. The Civil Supplies, Municipal Administration and other departments had been addressed to exempt those affected from fingerprint scans, he said.
Published - October 21, 2017 07:59 pm IST
