End Leprosy : Pathway is through stopping stigma against affected persons
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Shobha Shukla, Bobby Ramakant-CNS
Contd from previous issue
She has also coordinated State Human Rights Commission and has been a key member of the District Leprosy Coordination Committee.
Maya has received various awards recognising her contribution towards betterment of people affected with leprosy, including Sasakawa India Leprosy Foundation’s "Rising to Dignity Award" and RK Mehta Charitable Trust’s "Social Service Award." In 2014, she was cast in a documentary called ‘The unsung Hero."
Land rights
People affected by leprosy were forced to live and survive in the so-called ‘leprosy colonies’ decades back, but they have no land rights even today. Usually, such colonies are alongside railway tracks or adjoining forests or other such spaces, but the legal status proclaims them as ‘illegal occupants.’ This is a serious problem, says Maya.
CNS spoke to a person who got cured with leprosy and lives in a leprosy colony in Bhubaneswar. He preferred to remain anonymous. He said that he wants to get a job, but leprosy-related stigma and discrimination often jeopardises the work he gets, if at all. In such a situation, he is forced to resort to begging. Unless people or children affected by leprosy can get due education, right to employment, decent housing, just wages, and other health and social security, how will we ever end leprosy? (and begging)?
Maya too echoes this issue. She has been a long-standing crusader for financial pensions for people affected by leprosy. She has contributed to the Human Rights Commission reviewing and ruling in favour of persons affected, as well as in obtaining a special maintenance allowance from the Municipal Corporations for more than 3,000 people affected by leprosy. She is also a mentor for livelihood projects run by Sasakawa-India Leprosy Foundation and partners.
But despite efforts, the amount of pension received by persons affected by leprosy is not only meagre, it varies from state to state, and from person to person depending upon the extent of their disability.
In Odisha, people affected by leprosy were getting INR 1000 till recently. Now, Odisha government has increased the amount to INR 3500, but only for those with 80% or more disability (medically certified). In some states, like Telangana and Andhra Pradesh, eligible people get up to INR 5000.
Social security for people affected by leprosy needs to consider the age-old stigma and discrimination people face even today. “Unless we provide decent and just pension amounts to all persons affected by leprosy, we will be inadvertently forcing people to give up and beg,” says Maya. “We are trying our best to encourage people affected by leprosy to abandon begging, but we need pension support along with other social security to help them transition with human dignity and rights.”
Right to education and right to employment and decent wages
India’s Right To (Compulsory and Free) Education Act, 2009 recognises that eligible children who should get compulsory and free education include those who are ‘disability cured’. But reality on the ground is far from being ideal.
Maya points towards several laws and conflicting policies when it comes to ending leprosy. Unless we harmonise policies and laws to support persons affected by leprosy, it is not possible to end leprosy – and ensure a life of human dignity and rights for the people affected by leprosy. Even though the disharmony in laws and policies has reduced over the years but it is still far from being an ideal policy framework.
One example is The Rights of Persons with Disabilities Act, 2016. It was only after a lot of community-led advocacy by Maya and others, that it included people affected by leprosy. But awareness level among communities affected by leprosy is way below from being optimal. The gap in translating the law in practice becomes wider when it comes to women, says Maya.
She also underlines the dire need for providing optimal mental health support to people affected by leprosy, uniform education for all children affected by leprosy as well as due and just employment and decent wages for the adults.
The Indian government has promised to end leprosy by 2027 – three years before the global target for leprosy elimination. But ending all forms of stigma and discrimination against persons affected by leprosy is an urgent priority in the region.
(Shobha Shukla and Bobby Ramakant lead the editorial at CNS (Citizen News Service) and are on the board of award-winning Global Antimicrobial Resistance Media Alliance (GAMA). CNS is an official media partner of AIDS 2024. Follow them on twitter @Shobha1Shukla, @BobbyRamakant)
Contd from previous issue
She has also coordinated State Human Rights Commission and has been a key member of the District Leprosy Coordination Committee.
Maya has received various awards recognising her contribution towards betterment of people affected with leprosy, including Sasakawa India Leprosy Foundation’s "Rising to Dignity Award" and RK Mehta Charitable Trust’s "Social Service Award." In 2014, she was cast in a documentary called ‘The unsung Hero."
Land rights
People affected by leprosy were forced to live and survive in the so-called ‘leprosy colonies’ decades back, but they have no land rights even today. Usually, such colonies are alongside railway tracks or adjoining forests or other such spaces, but the legal status proclaims them as ‘illegal occupants.’ This is a serious problem, says Maya.
CNS spoke to a person who got cured with leprosy and lives in a leprosy colony in Bhubaneswar. He preferred to remain anonymous. He said that he wants to get a job, but leprosy-related stigma and discrimination often jeopardises the work he gets, if at all. In such a situation, he is forced to resort to begging. Unless people or children affected by leprosy can get due education, right to employment, decent housing, just wages, and other health and social security, how will we ever end leprosy? (and begging)?
Maya too echoes this issue. She has been a long-standing crusader for financial pensions for people affected by leprosy. She has contributed to the Human Rights Commission reviewing and ruling in favour of persons affected, as well as in obtaining a special maintenance allowance from the Municipal Corporations for more than 3,000 people affected by leprosy. She is also a mentor for livelihood projects run by Sasakawa-India Leprosy Foundation and partners.
But despite efforts, the amount of pension received by persons affected by leprosy is not only meagre, it varies from state to state, and from person to person depending upon the extent of their disability.
In Odisha, people affected by leprosy were getting INR 1000 till recently. Now, Odisha government has increased the amount to INR 3500, but only for those with 80% or more disability (medically certified). In some states, like Telangana and Andhra Pradesh, eligible people get up to INR 5000.
Social security for people affected by leprosy needs to consider the age-old stigma and discrimination people face even today. “Unless we provide decent and just pension amounts to all persons affected by leprosy, we will be inadvertently forcing people to give up and beg,” says Maya. “We are trying our best to encourage people affected by leprosy to abandon begging, but we need pension support along with other social security to help them transition with human dignity and rights.”
Right to education and right to employment and decent wages
India’s Right To (Compulsory and Free) Education Act, 2009 recognises that eligible children who should get compulsory and free education include those who are ‘disability cured’. But reality on the ground is far from being ideal.
Maya points towards several laws and conflicting policies when it comes to ending leprosy. Unless we harmonise policies and laws to support persons affected by leprosy, it is not possible to end leprosy – and ensure a life of human dignity and rights for the people affected by leprosy. Even though the disharmony in laws and policies has reduced over the years but it is still far from being an ideal policy framework.
One example is The Rights of Persons with Disabilities Act, 2016. It was only after a lot of community-led advocacy by Maya and others, that it included people affected by leprosy. But awareness level among communities affected by leprosy is way below from being optimal. The gap in translating the law in practice becomes wider when it comes to women, says Maya.
She also underlines the dire need for providing optimal mental health support to people affected by leprosy, uniform education for all children affected by leprosy as well as due and just employment and decent wages for the adults.
The Indian government has promised to end leprosy by 2027 – three years before the global target for leprosy elimination. But ending all forms of stigma and discrimination against persons affected by leprosy is an urgent priority in the region.
(Shobha Shukla and Bobby Ramakant lead the editorial at CNS (Citizen News Service) and are on the board of award-winning Global Antimicrobial Resistance Media Alliance (GAMA). CNS is an official media partner of AIDS 2024. Follow them on twitter @Shobha1Shukla, @BobbyRamakant)