Even with apparent deformities to their bodies, many leprosy-affected individuals are not recognised as ‘disabled’ by the state health department.
Vijayawada/Guntur: Kodavalli Ramadevi avoids visiting the fair price shop in Godugu Vari Gudem village at Nuzwid mandal in the Krishna district of Andhra Pradesh at the beginning of the month to collect her rations. She waits for at least ten days every month, just to ensure that everyone in the village has already availed their share of Public Distribution System (PDS) rice so she can escape the anxiety and humiliation. Anxiety of whether her “anesthetic fingers” would be detected on the biometric system in the rationing offices and the humiliation of exposing her mangled limbs in public. Ramadevi suffers from grade II type leprosy which has severely affected her sensory nerves, causing ulceration and mutilation of her limbs.
“Last month, I did not get the five kg rice I am entitled to,” Ramadevi told The Wire. In December, after briskly rubbing her fingers and palms for nearly two hours to ensure some blood had flown through her otherwise numb fingers, only one finger got authenticated on the biometric system, which was enough. “Since I do not have any sensation on my fingers, I later noticed my palms had developed lesions because of the rigorous rubbing,” she said.
The compulsory seeding of biometrics with the ration card began as early as 2015 in Andhra Pradesh. Local PDS dealers and block supply officers have been given strict instructions: “no ration without biometric authentication”. This, for Ramadevi’s family – which includes her husband, a daily wage earner at a nearby bakery, and a teenage son – means erratic access to the five kg of rice and one kg of sugar. “In the past year, I have missed out on ration at least five times because the system did not detect my fingerprints,” Ramadevi said.
Ramadevi is not alone; hundreds of leprosy patients in the state go through this process month after month and each time, it is a game of chance, a gamble almost, whether the machines will recognise their fingerprints.
Leprosy, a chronic and progressive bacterial infection, if not treated on time, can cause severe disfigurement and significant disability. It takes between seven to 25 years before the symptoms appear. Besides the limbs, it also adversely affects the respiratory tract and the iris.
Seventy-year-old Ann Saguna was shocked when the biometric system rejected her iris scan last month. The disease had already swallowed her fingers and toes over five decades ago. But now, with age, she has also been hit by one of the most commonly experienced ocular manifestations of leprosy which leads to chalk-particle like glistening lesions near the pupillary margin. This condition has made her iris “undetectable” on the iris reader of the biometric system. In November, when Saguna went to the ration shop near where she lives in Vijayawada, she was turned back. “They said that they can’t identify me on the (biometric) system.” Saguna has not received rice and sugar for the last two months.
Saguna is an inmate at the Grace Leprosy colony which was built in 1970 on the outskirts of the city, right opposite the Vijayawada airport. She was still in her teens when she had walked out of her house owing to her illness. Since then, she has been begging for alms on the streets – first in Hyderabad and now in Vijayawada. Now old and frail, she said, “I can no longer travel to the city which is 24 km away from here. On days when I do, I make around Rs 40-50. But those days are rare. Rest of the days, I live in the colony, hoping for help”.
The monthly ration is her only source of food. She gets a government pension. However, according to Alladi Chandrashekar, a colony inmate and the secretary of the Andhra Pradesh Society of Leprosy Affected People (AP-SLAP), availing both ration and pension need biometric authentication of fingers or at least iris recognition. The organisation, established in 2005 by the affected persons has played an important role in raising the public profile of the community’s issues and carrying out sustained advocacy efforts with the state government to ensure they are not deprived of their legal entitlements.
Apart from social stigma and daily rejections, discrepancies in the implementation of government schemes add to the troubles of the 39 families living in Grace. AP-SLAP has been documenting similar stories of deprivation, denials and delayed access to legal entitlements from all 54 leprosy colonies of Andhra Pradesh which house approximately 1600 leprosy affected persons and their families. Another 2000 affected persons live within the community.
V. Narsappa, president of Association of Persons Affected by Leprosy (APAL), said at least one in four persons in the state is finding it difficult to avail their legal entitlements. Others too live under similar fear. “There is no guarantee when leprosy-affected fingers and iris will suddenly stop being detected on the biometric machines,” Chandrashekar explains.
Even with apparent deformities to their bodies, many leprosy-affected individuals are not recognised as ‘disabled’ by the state health department. Basic information of mostly physical deformities is fed in a system called Software for Assessment of Disabled for Access Rehabilitation and Empowerment (SADAREM) to assess their ‘degrees of disabilities’. SADAREM is a web enabled system which asks for details and computes the percentage of a person’s disabilities. “But this system does not have the intelligence to recognise the type of disabilities that are specific to persons affected with leprosy. Some people might have absolutely ‘normal’ looking hands. But the disease may have caused complete loss of sensation, rendering their hands useless. But SADAREM will still not recognise them as disabled persons,” points out Devapati Nageshwarrao, a Bunni Nagar colony inmate in Guntur district and also the state president of AP-SLAP. And even if one makes it to the list, the biometric system has to finally accept their fingerprints. This, even though, the Persons with Disabilities (Equal Opportunities, Protection of Right and Full Participation) Act, 1995, clearly recognises every leprosy-affected person under this category.
Non-recognition under the disability Act also means that the affected person cannot avail the government pension of Rs 1,000 or Rs 1,500, which is disbursed after SADAREM assesses their ‘degrees of disabilities’.
Similar gaps are seen in the implementation of the Antyodaya Anna Yojana (AAY) which guarantees 35 kg rice to such families. The government order of November 2009 had acknowledged the need to cover leprosy-affected persons under the AAY scheme as long as they fell under the ‘below poverty line’ category. “But according to our data, not even 10% families have been covered under the AAY scheme,” Chandrashekar said.
The joint director of the government’s leprosy department P. Rajendra Prasad, who coordinates between 13 District Leprosy Officers (DLO) says that some measures have been taken in the past months, but they still are few and far between. “SADAREM does not have any leprosy expert. I have asked for representatives like assistant paramedical officers or deputy paramedical officers from the leprosy department to be present at the SADAREM camps,” he told The Wire.
In some places, the state has tried to set up fallback measures in case the system fails, like deputing the village revenue officer (VRO) to counter authenticate the finger impressions with his own. This system works only as long as the VRO’s fingerprints are accepted on the system. Along with washed out fingerprints, the system can fail due to any reasons like the lack of connectivity, server problems, wrong seeding, or linking of Aadhaar data.
Krishna and his wife Venkatalakshmi recently had a harrowing time when the VRO sent men from the ration office to their house in Bunni Nagar colony to demand the return of the 35 kg rice and one kilo sugar they had availed under the AAY scheme. “The VRO had already authenticated a few families on the biometric. Just when it was our turn, his fingers stopped being detected on the system,” Krishna said. On negotiating, the VRO had allowed the couple to take the food grains along, but the next day, he demanded the grains to be returned to the rationing shop. “We somehow convinced him this time. But it might not be possible every month. It was us this month, it would be another family the next month,” Krishna added.
The block supply officers that The Wire spoke to in Krishna and Guntur districts were at a loss to explain how a system without a fallback option can be imposed on people who have a legal entitlement to rations under the PDS. Dr. Prasad too feels the system has way too many flaws. “It is a difficult task to ensure a foolproof way of disbursing ration and pension using the existing biometric system,” he added.
Overall, around 800 such colonies have been built across the country and over 1.5 lakh persons are estimated to be living in them, tells V. Narsappa, president of APAL. There are at least 50,000 more staying outside these colonies, with or without any institutional support. Analysis of geographical distribution of leprosy conducted by the World Health Organization (WHO) in 2015 shows that India accounted for the largest number of cases of leprosy at 60% of the global new cases reported by 136 countries.
These colonies, built over past four decades mostly by the Christian missionaries, initially sheltered only the destitute and the abandoned. Most of them married within these colonies over the years.
Gausiya Begum, 70, and her husband Abu Miyan, 82, have been living in Bunni Nagar colony for some time. They met in a leprosy colony many years ago and got married. Now old age and the debilitating effects of leprosy have left Abu Miyan bedridden, and Gausiya has to fend for the two. Although housing is taken care of, the couple is struggling with regular access to ration and pension. “My husband cannot walk to the ration shop which is two km away,” Gausiya said. Last month, Gausiya had to miss out on availing ration. This month, with the help of other colony inmates, she arranged for an auto rickshaw and took her husband to the ration shop. “There needs to be a lasting solution to this. Things can’t be so difficult all the time,” she said.
Dr. Prasad said he has petitioned the Society for Elimination of Rural Poverty (SERP), an autonomous society of the Department of Rural Development in Andhra Pradesh, to do away with the biometric system for the leprosy-affected community in the state. He has made recommendations for offline alternatives. There has been no response so far. Till a humane and efficient solution is found, hundreds of leprosy patients in the state will have to continue hoping, month after month, that the machines recognise their identity and they can get their portion of food, which is theirs by right.