Association of People Affected by Leprosy Leprosy Movement

Association of People Affected by Leprosy “Leprosy Movement In India”. Willow, India Habitat Centre, New Delhi on 8 th November 2016 V. Narsappa – President G. Venugopal – Vice President Dr. P. K. Gopal Senior Consultatant Mr. Uday Thakar – Advisor

Vision and Mission v To work for the Socio Economic Empowerment and welfare of persons affected v To promote respect and dignity in the life of the affected v To provide education to community about leprosy, general health and environment.

Objectives v To collect information on leprosy and function as a consulting agency. v To combat prejudice, discrimination, segregation, rejection, the use of derogatory terminology and the stigma. v The benefits of the APAL shall be open to all persons irrespective of caste, Religion, creed, sex etc. v Represent the people affected by leprosy at International, National & State level v To empower people affected by Leprosy to fight against stigma and discrimination

Leprosy Eradication Without touching the human aspects of leprosy, without achieving the social reintegration of leprosy affected persons in the Society, leprosy eradication work would be difficult to achieve.

Capacity Building v Human Rights v Grass root level training v Women / Youth empowerment training v Trainers for training v State leaders and colony leader to trained them.

INDIA v India always have the largest number of leprosy affected people in the world. Over 12 million persons have been treated and cured for leprosy since introduction of MDT. v There are 850 leprosy colonies in India where people live a marginalized life. v There are 16 national laws and many state laws in India that discriminate the leprosy affected people. There also traditional practices that result in discrimination.

Facts about Leprosy v Leprosy is like any other disease and least infectious v Leprosy is chronic disease caused by mycobacterium Lepre. v It affects mainly the skin and the nerves. v Skin lesion (Patches) with loss of sensation. v Thickening, tenderness or pain in a nerve. v Loss of feeling or weakness in figures and toes

Who get leprosy This depends on the individual capacity of a person to fight leprosy organisms. Through research it has been found that 95 – 99% of our population is resistant or can fight the leprosy micro-organisms if they enter in their body meaning thereby that 1 – 5% of the whole population is prone to develop the disease. Leprosy is not curse Leprosy is not Hereditary

New Cases Vs Deformity cases 150000 126800 127295 124752 126913 125785 120000 90000 60000 3927 3685 4650 5256 0 2010 -11 2011 -12 New cases 2012 -13 2013 -14 2014 -15 Deformity cases 5794

Case detection campaign under NLEP endemic areas S. No 1 2 3 4 5 6 Name of State Andhra Pradesh Bihar Chhattisgarh Gujarat Jharkhand Karnataka No. of Districts S. No Name of State No. of Districts 4 38 12 9 18 8 7 8 9 10 11 12 Madhya Pradesh Maharashtra Orisha Uttar Pradesh West Bengal Telangana 11 21 22 45 9 3

Social Stigma & Discrimination v Leprosy is a disease, which strikes fear in the society as a mutilating, disfiguring, contagious and incurable disease. v Leprosy has been a highly stigmatizing disease for centuries because it causes physical disfigurement and no cure being available until the 20 th century. v No disease has been more closely associated with stigma than leprosy, and it has become a metaphor for stigma.

Social Stigma & Discrimination v Persons affected by leprosy were forced to leave their home and live in segregated areas and suffer economic and social losses (participation restrictions) causing physical and emotional distress. v This is the only disease where the sufferer had to live in separate colonies, villages and even in distant islands v The repulsive physical image, the fear of infection and the belief that it is incurable are the root causes of the inhuman treatment that is often faced by those affected by leprosy.

Cause of Stigma Inferiority complex develops because of deformity v Physical v Segregate from family and society v Treat of communicability v Treat of Social avoidance v Self-stigma v Loss of self esteem

My View on Stigma Good physical shape- No visible disability Psychologically – Strong Economically -Well settled Educationally - Well Qualified If the affected person is strong in above 4 points any one there won’t be faced in much stigma & Discrimination.

UNHRC v Individuals affected by leprosy must be regarded as international partners discrimination. in the efforts to end v In 2010, joint efforts with The Nippon Foundation resulted in adoption of a resolution by United Nations Human Rights Council that called for the elimination of discrimination against persons affected by leprosy and their family members. v In 2015 we have again requested the UNHRC to establish a monitoring system to overview the implementation of this resolution.

Discriminatory laws 1. Indian Railways Act, 1989; 2. Maharashtra State Road Transport Corporation Act, 3. 4. 5. 6. 7. 8. 1980; Life Insurance Corporation Act, as amended in November 1987; Hindu Marriage Act, 1955; Special Marriage Act, 1954; Dissolution of Muslim Marriage Act, 1939; Indian Christian Marriage Act, 1872; Indian Divorce Act, 1869;

Discriminatory laws 9. Prevention of Begging Act, 1959 (Maharashtra, Gujarat and Karnataka); 10. Persons with Disabilities Act, 1995; 11. Industrial Disputes Act, 1947; 12. Bombay Municipal Corporation Act, 1888; 13. Juvenile Justice and Care and Protection Act, 2000; 14. Motor Vehicles Act, 1988; 15. Hindu Adoption and Maintenance Act, 1956; and 16. Rehabilitation Council of India Act, 1992.

Impact of UNCRPD felt in following areas It helped to …. v v v Reduce the level of stigma & discrimination provide civic amenities in some leprosy colonies provide Health facilities in the colonies provide Educational facilities for the children of affected persons in some states. Increase Awareness in the Society about leprosy & rights of leprosy affected persons

Areas where more attention is needed v Amendment in the derogatory Acts v Special attention to affected women & Children v Inclusion of affected persons in Social, cultural & other activities v Capacity Building & Skill Development of affected persons

How does Leprosy fit into the larger disability movement in our country? Is there a disconnect between the two sectors? v Government of India has included leprosy cured persons in the v v category of general disables. PWD Act 1995 Total no. of disable affected persons are limited in numbers, so their voice is weak. Under the “inclusion” concept leprosy affected persons have become the part of other general disables. The old barriers between these two groups now should be demolished. To strengthen the voice & networking of leprosy disable persons they are included in the general disability group but other disable people should accept leprosy affected persons as a part of their movement.

Health Education (Awareness) v Global/ National Appeal Release v Conducting Anti-Leprosy day Rally & World Disability day at State & District, Block Levels.

Association with NCPEDP

Advocacy APAL Vice President Mr. Venugopal, UP State leader Mr. Dayalu Prasad and Mr. Murari Sinha Met His excellency Hon’ble Governor Sri. Ram Naik and submitted their supplication of enhancement of pension and basic amenities The Uttar Pradesh state government G O (Pension) passed with kind heart from Rs. 300/- to Rs. 2500/-for Leprosy affected People. Behalf Leprosy affected People conveyed the gratitude to Govt. of UP.

Collaboration

CONCLUSION: v The most effective approach to combat stigma and discrimination is to invest in the people affected by the disease as equal partners in this process. v In addition, it is seen that advocacy efforts go hand in hand with socio-economic empowerment and the promotion of education of children whose parents had leprosy.

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