‘We want to advocate for at least one concrete policy change with respect to people affected by leprosy’

The Government of India claims that the country has been able to eliminate leprosy as a public health threat in 2005. However, the Disabled People’s International (DPI) has a different story to tell. Javed Abidi, Chairperson, Disabled People’s International reveals that India is one of the high endemic countries of leprosy and people affected by it are often ignored when it comes to disability rights in India, in an interview with Raelene Kambli. Excerpts:

What are the statistics on leprosy in India? What are the disability rate related to India?

India declared elimination of leprosy as a public health problem in December 2005 indicating that at a national level there were less than one per 10,000 cases on treatment (as per the government statistics). WHO defines elimination of leprosy as a prevalence rate of less than one case per 10,000 persons.

Yet, official figures from 115 countries show the global registered prevalence of leprosy at 189,018 at the end of 2012 and during the same year, 232,857 new cases were reported.

As per the Weekly Epidemiological Record – September 5, 2014, WHO and NLEP- ‘Progress Report for the year 2013-14 ending on March 31, 2014’, Central Leprosy Division, Directorate General of Health Services, New Delhi, following are some statistics:

• 58.85 per cent of new leprosy cases in the world are in India
• 1.27 lakh new cases of leprosy were reported in India during 2013-14
• 12,043 new cases of leprosy during 2013-14 were children. In 13 states/ UTs, more than 10 per cent of new cases detected were children
• 46,845 new cases of leprosy during 2013-14 were women.
• A total of 86,000 (0.86 lakh) cases are on record as on April 1, 2014, giving a prevalence rate (PR) of 0.68 per 10,000 population.

What is the condition of people effected by leprosy in India? What about laws for their rights?

I feel it is pertinent to mention that despite the World Health Assembly’s enthusiastic adoption in 1991 of a resolution to ‘eliminate leprosy as a public health problem by the year 2000,’ it remains an important cause of global chronic neurological disability.

• In India, a strong stigma is attached to leprosy and people affected by leprosy are often discriminated against. People affected by leprosy are prevented from accessing community resources (e.g. water) or marrying individuals who do not have leprosy and are excluded from festivals, religious areas, employment, education and even healthcare facilities.
• People still believe that leprosy is a divine punishment for past sins and immoral behaviour.
• Even educated persons can become victims of misconceptions about leprosy.
• Worse still, the rights of those affected by leprosy and their families, continue to be violated even now.
• Numerous national and state laws contain discriminatory provisions against people affected by leprosy, including prohibiting people affected by leprosy from contesting elections, obtaining a driving license and travelling in trains. The laws also allow leprosy as grounds for divorce, meaning a person affected by leprosy can lose their home, belongings and access to their children. Many legislators, legal bodies and members of the government are not aware of the existence of discriminatory legislation or its devastating impact on people affected by leprosy, therefore concrete action has not been taken to end these practices.

You say that there are 10 to 15 laws in the country which are discriminatory towards people affected with leprosy. People affected with leprosy can be divorced, be denied property, etc., on the basis of these laws. Can you shed some light on this issue?

In India, we still have draconian laws that emerge from the Lepers Act of 1898. There are nine laws that have direct discriminatory provisions:

1. Hindu Marriage Act, 1955 [Section 13(1)(IV)] gives grounds for divorce if a partner has been suffering from leprosy for at least three years.
2. Dissolution of Muslim Marriage Act, 1939 [Section 2(VI)] grants divorce if the spouse is suffering from leprosy.
3. Indian Divorce Act, 1869 [Section 10] states that a marriage can be dissolved on the grounds that a partner has been suffering from leprosy for at least the previous two years.
4. Indian Christian Marriage Act, 1872 states that a marriage can be dissolved on the grounds that a partner has been suffering from leprosy.
5. Hindu Special Marriage Act, 1954 [Section 27(g)] states that divorce can be granted if a partner has been suffering from leprosy.
6. Special Marriage Act 1954, [Section 27 (1)(g)] states that divorce can be granted if a partner has been suffering from leprosy for at least three years, the disease not having been contracted from the petitioner.
7. Hindu Adoption and Maintenance Act, 1956 [Section 18(2)(c)] states that a Hindu wife is entitled to live separately from her husband without forfeiting her claim to maintenance if he is suffering from Leprosy.
8. Prevention of Begging Act, 1959 allows detention of ‘lunatics and lepers’.
9. Life Insurance Corporation Act, 1987 [Section 12] specifies a higher premium for people with leprosy.

There are seven laws that can be used against people affected by leprosy:

1. Indian Railways Act, 1989 [Section 56] gives railway authorities the power to refuse carriage to people affected by leprosy.
2. Motor Vehicle Act, 1988 [Section 8(4)] considers people affected by leprosy ineligible for a driving licence.
3. Maharashtra State Road Transport Corporation Act, 1980 prohibits people affected by leprosy in getting a driving licence in Maharashtra.
4. Bombay Municipal Corporation Act, 1888 [Section 421] 3 – Every medical practitioner who treats or becomes cognizant of the existence of any dangerous disease [or any case of continuous pyrexia of unknown origin of more than four days’ duration] in any private or public dwelling, other than a public hospital, shall give information of the same with the least practicable delay to the executive health officer. The said information shall be communicated in such form and with such details as the executive health officer, with the consent of the commissioner, may from time to time require.
5. Industrial Disputes Act, 1947 [Section 2] provides for termination of service of workmen on the grounds of continued ill-health, including people affected by leprosy.
6. Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 [Section 2]
   includes ‘leprosy cured’ under the term ‘Disability’, but not persons affected by leprosy who have not yet been cured.
7. Rehabilitation of Council of India Act, 1992 [Section 29©] does not cover all the disabilities associated with leprosy under its definition of ‘handicapped’.

Your organisation has also started a campaign on this. Can you share the objective of this campaign and give an update on the efforts taken so far?

We strongly feel that the voice of people affected by leprosy has been neglected by government and the disability movement for long now. There’s a direct connection between leprosy and disability and I am amazed that for so many decades, people affected by leprosy have not been integrated with the disability movement.

Disabled People’s International (DPI) in collaboration with The Nippon Foundation and National Centre for Promotion of Employment for Disabled People (NCPEDP) has undertaken an initiative to include the voice of people affected by leprosy in the global disability movement, with a particular focus on India, and to advocate for a significant policy change vis-a-vis the rights concerning people affected by leprosy.

Being the first global cross-disability DPO with an unparallel reach in more than 150 countries, DPI in collaboration with The Nippon Foundation are making conscious efforts to bring greater visibility to issues concerning the rights of persons affected by leprosy. Our project is expected to have a two way impact. On one hand, DPI and the overall cross disability movement in the world would be strengthened by the participation of persons affected by leprosy in the larger global disability movement. On the other hand, the voices of persons affected by leprosy against discrimination and for equal rights would be strengthened with the support of larger disability community. The long- term effect would be reduced discrimination and increased awareness on the rights of persons affected by leprosy. In the long run, people affected by leprosy would be able to lead their life with dignity and as equal citizens.

How do you wish to reach out to the government to fight for the rights of people affected by leprosy?

We want to advocate for at least one concrete policy change with respect to people affected by leprosy.

• We have formed a Core Group and a baseline report has been prepared.
• We are working towards creating a larger movement that will advocate against repealing of all the discriminatory laws.

What kind of help do you wish from the healthcare industry?

Leprosy is primarily a disease of the poor. Hence the steps needed are:

• Health education for self care and MDT compliance.
• Decrease health inequity due to poverty, especially in rural areas with limited access to healthcare.
• Address cultural myths and beliefs. Cultural aspects of leprosy affecting its control include traditional medicine and stigma.
• Sensitisation is required in all aspects, even in hospitals leaving no room for stigma that can lead to discrimination. The healthcare industry should play an important role in dispelling the social evils of the disease.

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