TAKE PART, TAKE THE LEAD

rights-based approach to social inclusion and participation of people

affected by leprosy
Paper presentation by Ms Nikita Sarah
The Leprosy Mission Trust India

Poverty and Social Protection Conference 2015

Bangkok, Thailand

Objective
To identify the challenges in using rights-based approach to social
inclusion and participation of people affected by leprosy, and strategies
adopted for bringing about their social inclusion and participation.

Background
James Griffin, the American-born philosopher said, Human rights are rights that
humans have, simply by virtue of being human.
Article 1 of the UN Universal Declaration of Human Rights (UDHR), 1948, states,
All human beings are born free and equal in dignity and rights. They are endowed
with reason and conscience and should act towards one another in a spirit of
brotherhood.
It has been universally recognised that all human beings have inherent rights
(because of the fact that we are born as human beings!) irrespective of nationality,
place of residence, gender, national or ethnic origin, colour, religion, language,
ability or any other status.
Human rights are the foundation of freedom, justice and peace.

Background
Leprosy (also known as Hansens disease), the oldest disease known to mankind
is a chronic, infectious disease affecting the skin and peripheral nerves of
infected individuals.
It is caused by a bacillus (a rod-shaped bacterium), Mycobacterium leprae.
It is curable with multi-drug therapy (MDT); but if untreated, it can result in
nerve damage, with neglected injuries leading to deformities
These result in the typical impairments associated with leprosy, such as loss of
digits, clawed hands and foot drop. In many communities, this leads to stigma
and discrimination towards those affected and their family members.

Background
The stigma attached to leprosy has brought all sorts of discrimination against those
affected.
Leprosy has become synonymous with stigma, discrimination and isolation. It is no
surprise that leprosy is known as the death before death.
Most of the rights of people affected by leprosy, including right to life, right to food,
right to education, etc, are grossly violated.
Years of welfare dependence have deprived people affected by leprosy the ability to
think in terms of rights.
Bringing about a rights-based approach among them for their social inclusion and
participation has many challenges.

Challenges
Self-stigma, lack of self-belief and attitude of people affected by leprosy- they
dont believe they can bring change in their lives
Lack of strong leadership
Illiteracy and lack of education
A culture of begging and lack of interest among older members on rights issues
Stigma and discrimination from the surrounding community
Problems in engaging with people affected by leprosy outside the colonies
Lack of priority for a rights-based approach and no peoples movement focused
on this issue

Challenging Anti-Leprosy Legislation (CALL) Project

An advocacy project of The Leprosy Mission Trust India, funded by Department for
International Development (DFID) of the British government, CALL aims to empower
people affected by leprosy in India to unite and advocate for their rights and entitlements
and also get discriminatory legislations repealed.
The project is implemented in Delhi and in two states in India - Chhattisgarh and Uttar
Pradesh - where the incidence of leprosy is very high.

Strategy
CALLs strategy for a rights-based approach to social inclusion and
participation of people affected by leprosy:

Two stakeholder groups in any rights-based approach - rights holders (who

do not experience full rights) and duty bearers (institutions obligated to
fulfil the holders' rights).
CALLs strategy aimed at sensitising duty bearers, and empowering the
rights holders, that is, people affected by leprosy, so that they can
collectively claim their rights and entitlements.
For this, CALL has formed rights-based Community-Based Organisation
(CBOs) among people affected by leprosy for them to have a platform and
the capacity to collectively work for claiming and protecting their rights
and entitlements.

The Process
The entire project area was mapped for identifying people affected by leprosy and
other key stakeholders.
A specific training module, covering human rights and advocacy, was developed and
the project team trained people affected by leprosy on rights and entitlements,
government social welfare schemes, CBO formation and management and advocacy.
People with leadership qualities and rights-awareness from among people affected
by leprosy were identified and they were groomed to take responsibility to lead and
manage the CBOs in their own colonies.

The Process
24 CBOs were supported in developing an effective organisational structure and by-laws
for smooth and effective functioning.
CBO members were regularly trained in identifying rights violations and doing advocacy
for restoring their rights.
Developed a CBO self-assessment toolkit, and the CBO members were trained to selfassess the progress of their CBOs based on the rating scale.
To encourage the community to invest in education, the team demonstrated the positive
change education brings in the lives of people affected by leprosy.

The Process
Using a specific training module, other key stakeholders (general community, policymakers, duty-bearers, members of local self-government bodies, NGO workers, grassroots
health workers, journalists) were sensitised on leprosy and leprosy-related human rights.
Members of local self-government bodies and policy makers who were sensitised were
encouraged to attend meetings where people affected by leprosy also participated and
interact with them to bring about more openness among them.
Media workshops were organised to sensitise the media, so that they can publicise human
rights issues of people affected by leprosy for wider national awareness.
Dramas, magic shows and canopy tents were used to target communities surrounding
leprosy colonies to raise awareness of the disease and break down stigma.

Results
There are encouraging evidences to show that CBO members, after adopting a rightsbased approach, are claiming and defending their rights, and have shifted their focus
from living on charity to actively engaging in their own development.
They work together, and:
access their rights and entitlements, like right to life, right to livelihood, right to food,
right to health and right to education
access services in government healthcare institutions as part of their right to health
access government social welfare schemes
document cases of discrimination faced by them and take up these issues with the media
engage with local self-government bodies
access improved community facilities and services through memoranda to government
authorities
challenge discrimination and inequality, and advocate for social inclusion and equal
distribution of resources

Results

Some of the key results:

CBO members have accessed 14,800 benefits of government social welfare schemes, like
health insurance, old age pension, subsidised food grains, disability card, disability
pension, bank account, general identity cards, electoral identity cards, free travel pass,
guaranteed employment, facility for institutional delivery, pension for widows, free
education for children.
380 CBO members were benefited by free drinking water provided by government in
leprosy colonies.
577 CBO members were benefited by roads constructed by government in leprosy
colonies.
1,490 CBO members were benefited by free electricity provided by government in
leprosy colonies.
1,544 CBO members were benefited by free houses provided by government.


Conclusion
Adopting a rights-based approach to social inclusion and participation of people affected by
leprosy has many challenges
A concerted effort by CBO members and all those who work with people affected by leprosy
has propelled them (people affected by leprosy) to social inclusion and participation by
adopting a right-based approach
A model that can be replicated elsewhere has been established through CALL project

Today I have the confidence to approach any government official, like District
Magistrate. If I feel I cannot go alone, other CBO members accompany me. Together we
are strong. The mindset of people in our colony has also changed since CALLs
intervention. Earlier, people used to drink and engage in nasty brawls. They lived on
charity and had no purpose in life. With CALLs support we are getting funds from the
government and are planning to open a mobile phone repairing shop, buy a batteryoperated rickshaw and look for other livelihood options - Mr Inder Prakash, CBO leader,
Moradabad District, Uttar Pradesh.

Thank You!

Stand Up For People Affected By Leprosy

Respect their rights... Restore their dignity