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Leprosy, An Excuse For Legal And Social Marginalization

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A month after the Dana Majhi episode in Kalahandi district of Odisha in 2016, the dead body of an 80-year-old widow was carried on a cot by her three daughters to cremate. The reason was fear and stigma of leprosy. A year later leprosy-cured Jagyasini Bhoi was denied a dignified funeral as her body remained untouched for hours. Only when it started decomposing that the she was stuffed in a garbage bag and thrown in the nearby forest. If this picture of 21st Century India from Odisha is still not enough to portray the amount of discrimination and stigma faced by people affected by leprosy, let’s see the scenario in the Capital of India.

In December 2002, Central Government framed the Delhi Metro Railway (Travelling of Persons from Infectious and Contagious Diseases etc) Rules, 2002, Section 7 of which mandates that in order to travel, a non-infective leprosy patient should carry a certificate from a registered medical practitioner certifying him to be non-infective. Ironically, this was gazette notified on the next day of Human Rights Day in 2002 and still highlighted as warning on the hoardings at metro stations.

On this day, seventy years ago, on 10th December 1948, the international community agreed that human rights are fundamental and universal rights. Human dignity was considered as the anchor norm of human rights respecting each individual to be of an inestimable value. But as the Universal Declaration was not a treaty therefore it was not legally binding. This changed when India ratified the Convention on the Rights of Persons with Disabilities in 2007 which forced India to create a new anti-discrimination law in the form of Rights of Persons with Disabilities Act, (RPDA) in December 2016.

Despite the progress, currently, there are 119 civil and criminal laws in India that discriminate against a person affected by leprosy on the grounds of the disease including ground for divorce, denial of driving license, incarceration, higher insurance and disqualification from academic posts, to name a few. The problem compounded in December 2005 when India declared itself leprosy-free. Leprosy was only eliminated not eradicated. India continues to account for 57% of new cases reported globally each year. Though these can be easily controlled, as a single dose of multidrug therapy completely cures the infection. What cannot be managed is the legal and social discrimination towards people affected by leprosy as well as their family members. It is not uncommon to find the youth from the Tahirpur area of Delhi (largest area inhabited by people affected by leprosy in Asia) face discrimination in education whenever they disclose their place of residence.

The RPDA passed in December 2016 was heralded as a game changer but it only covers those people affected by leprosy who have 40% and more of disability. Neither does it cover the rest, nor the family members who continue to face stigma. The possible solution to this was already provided by the Law Commission of India, a quasi-judicial body of the Government of India which proposed the adoption of a specific legislation on leprosy titled ‘Eliminating Discrimination Against Persons Affected by Leprosy and Their Family Members Bill, 2015’ (EDPAL Bill) in its report 256. It provides for repeal and/or amendment of provisions which are discriminatory in nature. An RTI filed by me on the status of EDPAL Bill shows that Centre has forwarded the report to State/UT for comments on personal laws and to the health, transport and law Ministry for the rest. Information from the Ministry of Parliamentary Affairs is awaited.

Last December, Rajya Sabha member KTS Tulsi introduced a Private Members bill [The Rights of Persons Affected by Leprosy and Members of Their Family (Protection Against Discrimination and Guarantee of Social Welfare) Bill, 2017] which is on the same line as EDPAL Bill. The repeal of 119 laws by Centre/States/Panchayats can take ages but by a single stroke in the Parliament either of the anti-discrimination bills (EDPAL or Private member) can be approved to provide human, civil, political, economic, social and cultural rights to people affected by leprosy.

70 years ago, it was an Indian woman Hansa Mehta in the United Nations Commission on Human Rights who fought to include women rights into the Declaration by forcing the change in Article 1 as “All human beings (not men alone) are born free and equal.” As we celebrate the 70th anniversary of the Universal Declaration of Human Rights on this Human Rights Day, the Indian Parliament can make the rights real by passing any of the two anti-discrimination Bill to grant fundamental human rights to people affected by leprosy. Will this December end discrimination?

(The writer is a medical doctor at University College of Medical Sciences, Delhi, and is a disability rights activist. Views are personal)

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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