Nothing for us without us

Mainstreaming of persons
affected by leprosy
National Leprosy Conference
December 5-7, 2017, New Delhi

By
Jayashree P K
Representing
People Affected by Leprosy
 Nothing for us without us
Mainstreaming 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
 Nothing for us without us
Mainstreaming 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including stigma and outdated discriminatory
legislations.

- Global Leprosy Strategy 2016-20 Operational

Manual
 Nothing for us without us
Mainstreaming 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
 Nothing for us without us
Mainstreaming 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
 Nothing for us without us
Mainstreaming 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
 Nothing for us without us
Mainstreaming 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
 Nothing for us without us
Mainstreaming 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)
 Nothing for us without us

Mainstreaming of affected people would look like

this:
1. Equal opportunity for work, and at work place
2. Enjoying vocation, recreation, education
3. People acknowledging Leprosy affected as such
not as people who have to hide their past.
4. Information about Leprosy being shared by people
affected directly to the others without fear.
 Nothing for us without us

Mainstreaming of affected people would look like

this:
5. Not being treated as a number, dot or a
dash on a statistical chart
6. Transparent system which captures data of
each affected individual needing ulcer care,
medication, livelihood, States care, and right
to citizenship all signs of Dignity.
 Nothing for us without us

What does having been Mainstreamed look like?

1. People affected have the knowledge of resources &
rights available to them to ensure their dignity is
preserved. This includes:
i) knowledge of where and by whom their
social, economical, medical, legal, medico-
legal, psychological well-being will be addressed
ii) getting the required support in a timely manner,
just as a customer would get services from a
vendor, in a free market that has competitors
who could provide better services at least cost.
 Nothing for us without us

What does having been Mainstreamed look like?

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.
 Nothing for us without us

What does having been Mainstreamed look like?

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.
 Nothing for us without us

What does having been Mainstreamed look like?

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 constitutes a National level committee with
State players, and representation from people
affected, with inclusion of women leadership from
people affected.
 Nothing for us without us

What does having been Mainstreamed look like?

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.
 Nothing for us without us

What does having been Mainstreamed look like?

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.
 Nothing for us without us

What does having been Mainstreamed look like?

9. Much effort has been 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 are living
peacefully being themselves.
11. The Leprosy affected are treated as if each life
matters that they are not mere statistics
 Nothing for us without us
Mainstreaming of persons affected by leprosy
The way forward Suggestions:
1. We need appropriately designed Educational programs:

If people affected are to recover their valuable lives then

they need support to become contributing members of
society for which we need to tackle the lack of
knowledge, negative attitudes and rejecting behavior
towards people affected.

The educational messages used has to make impact in

terms of positive social change. We need to develop Anti-
stigma programs that address the prejudice and
discrimination associated with Leprosy related conditions.
 Nothing for us without us
Mainstreaming of persons affected by leprosy
The way forward Suggestions:
2. We need appropriately designed Communication that
reaches out:

Underpinning the exclusion experienced by people

affected lie three key elements: problems of knowledge
(ignorance), problems of attitudes (prejudice) and
problems of behavior (discrimination). However, the type
of messages and approach used in trying to tackle
ignorance, prejudice and discrimination are critical.

Appropriate communication will need to be sent out to

healthcare workers, the people affected and the
communities in which they live, that the people affected
have equal status and rights, and that inclusion of people
affected should be a matter of rule than the exception.
 Nothing for us without us
Mainstreaming of persons affected by leprosy

The way forward Suggestions:

3. 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.
 Nothing for us without us
Mainstreaming of persons affected by leprosy

The way forward Suggestions:

3. Governments and other implementors responsibility:

Sensitisation and education contd..

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.
 Nothing for us without us
Mainstreaming of persons affected by leprosy

Thank you