DEOC is planning to bring a series of articles on different impairment categories with the aim to share with readers not just about the impairment but break any myths that one may have and the barriers that exist in the society which prevent their equal participation.
Many people think that Leprosy is eradicated in the country. It is not true. India has the highest population of people affected by Leprosy in the world. It is seen that 58% of new Leprosy cases are from India. In 2017, the reported number of new cases was 125,000.
What has changed is that there is complete cure for Leprosy since 1980. Multi Drug Therapy (MDT) (combination of 3 antibiotics) can cure Leprosy completely at any stage. The MDT is available free of cost at Primary Health Centres. WHO also made it clear that no segregation was required. Leprosy is like any other illness such as flu, TB etc. which can affect anyone and with medication, it is completely curable and can be treated at home (no isolation is required).
What has not changed, unfortunately, is the stigma related to Leprosy. Though medical development happened almost 30 years ago, the social development has not kept pace. People still fear Leprosy and do not interact/employ/marry people who have had Leprosy (now cured). Even their children are discriminated.
Another thing that hasn’t changed is that some age-old discriminating laws against people affected by Leprosy have not been repealed. For example, the marriage laws allow Leprosy as a ground for divorce (there are some 119 such laws that discriminate against people affected by Leprosy in the country) .
What is changing is that people who have had Leprosy, people living in Leprosy colonies, have formed associations and have started fighting for their human rights. This has led to several changes. Supreme Court is hearing the matter concerning discriminatory laws and favourable interim orders have already been issued. Also, The Rights of People with Disabilities (RPWD) Act, enacted in 2016, provides all rights to persons affected by Leprosy and they can go to the court using this law if they are being discriminated against in any manner.
What is to be changed is the pace of social development/awareness for ensuring that people affected by Leprosy are not discriminated in the society. We need to end the stigma related to Leprosy. The way one could do that is by educating people about the facts on Leprosy and dispelling the myths.
Here are some FAQs on Leprosy answered by Dr. P.K. Gopal. He is a Co-founder of International Association for Integration, Dignity and Economic Advancement (IDEA), an international advocacy group, promoting the human rights of people affected by Leprosy.
Leprosy is one of the recognised disabilities under the RPWD Act, please let us know if Leprosy is still prevalent in India? How many people are affected by Leprosy in the country?
Leprosy is still prevalent in India. In 2017. a total number of 125,000 new cases were diagnosed in India. There are about 850 Leprosy colonies in India, where Leprosy affected people and their families live.
This is a large number. Can anyone get Leprosy (across different sections of the society)
Yes. Anyone can get Leprosy.
Is Leprosy curable?
Leprosy is completely curable by medication. Multi Drug Treatment (a combination of three antibiotics: rifampin, clofazimine and dapsone) is available in all Government hospitals at free of charge.
Does one need to be isolated if she or he gets Leprosy?
It is not required to isolate a person with Leprosy at any time. When a person takes the Multi-Drug Therapy, the bacterias are killed within a few days, like in the case of Tuberculosis, Cholera etc.
Is it hereditary?
No. Leprosy is not a hereditary disease.
If people affected by Leprosy need not be isolated, why are there Leprosy colonies in the country?
The 850 Leprosy colonies are not newly formed. They have been in existence for a long period now. There are no new entrants to these colonies for some years now. This is a positive aspect. However,there are thousands of people affected by Leprosy who are living in these colonies with their familes.
What are the symptoms?
The common symptoms are: a patch appears over the body and loss of sensation in the patch.
I have had Leprosy. Can I get married and have children?
Yes, of course.
I have been asked to drop out of my college because I have Leprosy? Is this not discrimination? What can I do?
You can file a case against the college under The RPWD Act, 2016. It is a human right violation.
Is there a reservation in jobs for people affected by Leprosy?
Yes. Section 34 (1) (c) of The RPWD Act, 2016, provides for 1% reservation in all categories of jobs in Government and public sector, for people with locomotor disabilities, and it includes “leprosy cured”. This is applicable to people who have 40 or more disability percentage.
What is the right terminology ?
The term Leper should not be used. The preferred term is ‘people affected by Leprosy’. This is a broad term that includes people who have had Leprosy and their family members who are affected by the stigma related to Leprosy. The RPWD Act, 2016 uses the term ‘Leprosy Cured’.
I am working in a company and I have been diagnosed of having Leprosy. Should I quit the job? If I tell the employer, can they ask me to quit the job?
You can continue in the job. No need to tell the employer. Even if you tell, they cannot ask you to quit the job. Educate them about the disease and the law (The RPWD Act).
As employers, how can we ensure non-discrimination of people affected by Leprosy?
Educate the employees to avoid discrimination. When organizing sensitization session about disability, it is seen that only 4 to 5 disability categories are covered. You could make it a point to discuss about Leprosy and dispel any myths that they may have. You can invite leaders of the Leprosy movement to talk about their journey.
How else can a corporate support people affected by Leprosy?
They can provide funding for socio economic rehabilitation of Leprosy affected people living in colonies.
Tell us about yourself (The story of how you overcame discrimination)
Luckily I was not discriminated.
Tell us about your organization.
My organisation is working to empower the Leprosy affected people and make them live a normal life without any stigma and discrimination. Please see the website of our organisation http://www.idealeprosydignity.org/
What is your message to employers, educational institutions and larger public.
Leprosy is a curable disease like many other disease. Drugs are available at free of charge. Treat the Leprosy affected person as a person like others and give her/him employment. She/he can study in schools/colleges like any other student. No discrimination should be meted to persons affected by Leprosy. It is punishable under the law.