National Review Meeting of Leprosy

Eradication in India - July 10-12, 2017, Raipur

Priorities of Persons Affected by

Leprosy
By
Jayashree P K
Representing
People Affected by Leprosy
 Priorities of Persons Affected by Leprosy

The Global Leprosy Strategy 20162020 Accelerating

towards a leprosy-free world was officially launched
on 20 April 2016. The overall goal is to further reduce
the burden of leprosy while providing more
comprehensive and timely care following the principles
of equity and social justice

- Global Leprosy Strategy 2016-20 Operational Manual

 Priorities of Persons Affected by Leprosy

Good communication between all involved in the

case-management of a person affected by leprosy and
those disabled due to leprosy is essential. .. It is
important to identify and remove barriers that may
prevent new cases from coming forward, including
stigma and outdate discriminatory legislations.

- Global Leprosy Strategy 2016-20 Operational Manual

 Priorities of Persons Affected by Leprosy

People affected by Leprosy can say We were robbed of

our dignity, our memory, our honor. For majority, their
life can be summed up in the words of this poem:

So many roads, so much at stake

So many dead ends, Im at the edge of the lake
Sometimes I wonder what it's gonna take
To find dignity
 Priorities of Persons Affected by Leprosy

The Universal Declaration on Human Rights was pivotal

in popularizing the use of dignity or human dignity in
human rights discourse.

Article 1 of the UN Charter takes up this theme and

provides: 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
 Priorities of Persons Affected by Leprosy

Human dignity has played an important role in several

social and political movements of the 20th century. For
example:

- It has been shaped most by the reaction against Nazi

ideology
- It was a central organizing concept in the civil rights
movement in the United States
- It played the main role in the articulation of feminist
demands concerning the role of women
 Priorities of Persons Affected by Leprosy

Nelson Mandela, in his Trafalgar Square speech in 2005,

argued that Overcoming poverty is not a gesture of
charity. It is as act of justice. It is the protection of a
fundamental human rights, the right to dignity and a
decent life.

In the 1950s In the Australian Government's apology to

the indigenous stolen generation, the Prime Minister
apologized for past indignity inflicted
 Priorities of Persons Affected by Leprosy

Where treatment humiliates or debases an individual

showing a lack of respect for, or diminishing, his or her
human dignity or arouses feelings of fear, anguish or
inferiority capable of breaking an individual's moral and
physical resistance, it may be characterised as degrading
and also fall within the prohibition of article ( Human
Rights Campaign)
 Priorities of Persons Affected by Leprosy
Restoring Dignity to the Leprosy affected would look
like this:

1. Equal opportunity for work, and at work place

2. Belonging to a buyers and sellers marketplace
3. Enjoying vocation, recreation, education
4. People acknowledging Leprosy affected as such
not as people who have to hide their past.
5. Information about Leprosy being shared by
people affected directly to the others without
fear.
 Priorities of Persons Affected by Leprosy
Restoring Dignity to the Leprosy affected would look
like this:

6. Not being treated as a number, dot or a

dash on a statistical chart
7. Transparent system which captures data of
each affected individual needing ulcer care,
medication, livelihood, States care, and right to
citizenship all signs of Dignity.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

1. People affected have the knowledge of resources

and rights available to them to ensure their
dignity is preserved. For example, they have
complete knowledge of where and by whom their
social, economical, medical, legal, medico-legal,
psychological well-being will be addressed. Not
only they KNOW, they also GET the required
support in a timely manner, just as a customer
would get services from a vendor, in a free market
where there are competitors to provide better
services at least cost.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

2. A decent Livelihood subsistence allowance should

not be a matter to be fought for but rather the
States responsibility to reach out and provide.
What is decent allowance should include the
principles of equity and fairness as the State has
the ultimate responsibility for allowing disability
to go undetected.
 Priorities of Persons Affected by Leprosy
Priority of people affected by Leprosy for whom
Dignity is restored.
3. Appropriate care and attention is provided to the
next generation from the families of people affected
Educate, Employ, Orient should be the mode.

4. Rights of people with Disability Act provides for

Legal recourse to those discriminated due to
disability. Leprosy affected and disabled individuals
have access to these rights. Legal counsel and
support is provided for free for these people when
required.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

5. The recent meeting of the UN Human Rights

Commissions (UNHRC) have appointed an official to
find out which countries are not yet implementing
Article 1 of the Universal Declaration of Human Rights
of the discrimination of people affected. India too
should constitute a National level committee with State
players, and representation from people affected, with
inclusion of women leadership from people affected.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

6. People affected are not forced to vacate the land that

holds their home in the name of development.
Possessing land can only be done with consultation of
the people whose homes are being displaced.

7. Dignity of identity of people affected and used for

promoting the cause and for fund raising is retained.
NGOs and Government are partnering with people who
provide advocacy support to remove any barrier among
each other.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

8. Along with importance of achieving targets

pertaining to new cases (including new disability and
new child cases,) focus is put on existing people
affected and left disabled. Life-long needs of ulcer
care and footwear and other associated illnesses are
provided for through a specific, independent
program that includes these people. Training is
provided for people who are cured, if need be, to
reduce costs and to utilise expertise.
 Priorities of Persons Affected by Leprosy

Priority of people affected by Leprosy for whom Dignity is restored.

9. Effort is taken to ensure that public understands that

Leprosy is not the culprit but neglect and apathy of
the affected people is.

10. Sensitisation of people and community is done

effectively so that people affected can live
peacefully being themselves.

11. The Leprosy affected are treated as if each life

matters that they are not mere statistics
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
1. Implement Stakeholder Analysis
Since the problem of Leprosy is complex, with a hybrid
system of organisational and stakeholders as players,
a Stakeholder analysis is required to make success of
the project on hand.
Define the shared goal

Define stakeholder group

Analyse the relationships

Develop the engagement plan

 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
2. Manpower planning
1. Once stakeholders are clear what is the required roles each
constituent plays, the planning of human resources becomes
the next requirement.

2. Appointment of officials with commitment and requisite

leadership becomes mandatory. Communication channel
should be thrown wide open to all stakeholders. Vacancies
CANNOT be left un-filled. Budgets should be made available
for right persons to be appointed for ALL vacancies with
utmost priority. Officials should be trained management,
attitudinal etc to align the individual goal to the
organisational goal.
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
3. Stakeholder Training
For any external observer, the gaps between various
stakeholders is apparent.
1. The way forward is to get all stakeholders on the same page.
Appropriate levels of training programs will need to be taken
up. Attitudinal training is very important as everyone will then
speak the same language.

2. The Training should percolate to the ground level worker and

the beneficiary representatives.

3. Funds should be made available for sufficient training

programs
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
4. Quality Management concepts to be implemented
Quality is ultimately free as benefits received from small
investments in quality will reap richer dividends in the form of
results
1. Benchmarking Statewise, District-wise and PHC-wise could
be implemented as a way to achieve better services
2. Continuous improvement including suggestions and
recommendations from all stakeholders should be recorded
and appreciated.
3. Total Quality Management implementation should ensure
free reporting of cases. For example earlier reporting is
rewarded.
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
5. Statistics should be used as only one measure
Non-quantitative measures are equally of not more important.
For example:

1. Families relieved of suffering due to timely diagnosis, dignified

treatment and care and proper counseling

2. Dignity restored when lost, quickly.

3. Legal redressal done quickly

4. People cured coming forward to self-declare and willing to be

used for advocacy work.
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
6. Governments and other implementors responsibility:
Sensitisation and education should produce viable results and to
be effective should engage the beneficiaries in a bigger way
not just as victims:

1. Stories of courage and success should find its way in text

books of very young children. It can have a positive impact.

2. Role models to work with DLOs / SLOs/ PHC doctors who do

not touch patients. Doctors are divided into two categories
one that discriminate and others who do not.
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
6. Governments and other implementors responsibility:
Sensitisation and education

3. Early sensitisation for the new generation doctors include a

compulsory round of work at Leprosy hospitals, PHCs dealing
with Leprosy etc.

4. Images of Leprosy as a simple disease of no consequences

should be circulated via media

5. Images of leprosy affected, celebrities and communities

mingling should be circulated via media.
 Priorities of Persons Affected by Leprosy
The way forward Suggestions:
6. Governments and other implementors responsibility:
Sensitisation and education

6. Reports from PHCs where non-discriminatory practices were

adopted should be shared among other PHCs. Newletters and
other media can be used for this purpose.
Priorities of Persons Affected by Leprosy

Thank you