Social protection: how to unlock a resource that can transform a life
Mangala was diagnosed with leprosy when she was a child and immediately faced discrimination. When guests would visit her family home, her parents would send her outside so she would not be seen. Her father dreamed Mangala would grow up to become a nurse, but because leprosy made her unwell, she failed her exams. She felt like this made her a failure in his eyes.
'My family did not want anything to do with me when I was younger. They had rejected me. But that changed when I was trained by The Leprosy Mission and began working here. I had a reliable career, I had become economically strong and now I am dear to my family.
‘That is the reality for many persons affected by leprosy, who often come from the poorest backgrounds. Without a source of income, many people will not be accepted by their families. Even more so if leprosy has caused a significant impairment or if you are a woman. The perception is that you have nothing to contribute to the household, that you may even be a burden who must be cared for. This is the context in which you have to understand the importance of social protection.’
Mangala and her husband Suresh are working for The Leprosy Mission in the Indian state of Maharashtra, where they see stories like Mangala's all the time, as Suresh explains,
‘We visit families and we hear stories about neglect and rejection, but when we talk to the families about disability schemes and other social protection schemes, the families will start to welcome the person affected by leprosy back into the family. The perceptions of stigma and a person being a burden begin to change with this access to funds. This becomes about more than accessing income, these social protections schemes are one of the ways that we can start to eliminate the stigma that surrounds leprosy. They provide independence while also offering a route back into family.’
When Suresh and Mangala were diagnosed with leprosy in the mid 1990s, they had no idea that leprosy was classified as a disability under Indian law and that they could access disability-based social protection. It was only later in life that they came to learn this.
The want all persons affected by leprosy in India to have this knowledge. In 2015 they compiled a book of all the possible schemes at every level of government that a person affected by leprosy could access. Here are some of the schemes included within this.
Relaxation in bus and train fares
Disability pension schemes
4% reservation in government jobs
Reservation in schools, colleges, and Industrial Training Institutes (ITIs)
Loan schemes and funds for OPDs
School fee support of ₹2,500 per month for up to two children of persons with disabilities
Participation in policymaking committees when the government formulates policies
Housing schemes
Self-employment loans
Ration cards, for access to free groceries
Free treatment in government hospitals
In India there are many great resources available to persons affected by leprosy. However, to access many of these resources, they must first acquire a certificate of 40% disability. This can be presented to government departments at all levels to access crucial support.
However, many persons affected by leprosy struggle to access this 40% level. As Suresh explains,
‘The people who make these assessments are used to assessing disability that they can see, that is observable. A person affected by leprosy may arrive at this assessment without any visible signs of leprosy or impairment, but because they may have no feeling in their hands or feet, there are a whole range of livelihoods that are not safe for them. If the assessor cannot understand that, they will not offer a 40% certificate. This is what we try so hard to raise awareness of within government.’
Research
First you need to understand what social protection opportunities are available. Most government departments publish this information, but if you are struggling to understand where to start, go and speak to an Organisation of Persons with Disabilities. They are an excellent resource; they know what is available, the best way to access it, and how to advocate with the right people.
Twin Track Part One: Government
We take a twin-track approach and this is the first track: raising awareness of leprosy with government officials so they understand the impact of leprosy. That has helped us get over the barriers to accessing the 40% certificate. It's often best not to speak to the most senior people, as they move jobs often. Instead, speak to the people one wrung down, who will be around for longer.
Twin Track Part Two: Persons Affected
The second part of the twin-track approach is making sure persons affected by leprosy are aware of what is available to them. We have posters across our hospitals which detail the schemes that are available and we do our best to distribute the booklet we made in 2015. We make sure people understand the importance of registering as a person with a disability in their village.
Track policy changes
The policy changes in this space happen often so it's important to stay on top of new developments. Again, Organisations of Persons with Disability are a great resource in this respect. Together you can also lobby for changes with a voice that is stronger together. In one place we lobbied for the disability assessment office to be open for longer hours; it was a small change but it made a difference.
