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What We As A Society Do To A TB Patient Is Far Worse Than What The Disease Does To Them

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Image source: Operation ASHA

On a hot August morning in 2014, I reached Dharavi in Mumbai at around 11 am. I waited outside for Govinda, a Program Manager with NGO Operation ASHA, who heads a team of community health workers. He and his team work towards the treatment of TB patients in the area, known as one of India’s ‘TB hotspots’. This is of course firmly away from the more glamorous part of Mumbai – that of film stars and celebrities. Here, concerns are a lot more basic. Like how Govinda arrived on his bike and asked if I had my N95 mask ready before we went in to interview TB patients and their families. The mask is a great preventive measure against the disease and in fact, all health workers must wear it, but since it was the first time for me, I felt uneasy. “Won’t it seem like I want to maintain distance from them if I am wearing the mask? Doesn’t it create more stigma?” I asked Govinda. “Don’t worry madam, they are used to it,” he replied.

As we entered the slum, the sunlight was suddenly cut out. We walked on jute bags, bricks, loose stones and anything else that was available to avoid stepping into the drain, somewhat a perennial presence cutting across Dharavi. One of the first houses we visited was of 8-year-old Anjali’s. She had just recovered from thyroid TB. Govinda told me that she had a nodule on her throat but her parents hesitated seeking treatment because of what the neighbours would say about how their daughter had become ‘deformed’.

I spent just over two hours in Dharavi that day, and those few hours were enough to make me wonder, on my way back home, as to how terrifying the situation of TB is in India. In a country with the highest number of TB cases in the world (23%), where treatment should be the need of the hour, social stigma is a prime factor that deters people. TB is normally cured in 6 months to 2 years but social stigma? It sticks on with patients being identified as ‘that person who had TB’ even long after cure.

One of the most dangerously propagated ideas is that “TB patients are a bad omen”. In fact in some places in India, a person infected with TB is considered ‘unlucky’ or even associated with witchcraft. 40-year-old Kumar Pal, an Indian street-food vendor, spent weeks in bed in isolation, during his TB treatment as he was completely abandoned by his family and friends. And such social isolation doesn’t only cause loneliness, it leads to depression and can even shorten a person’s lifespan. Cases like Pal’s prove that the mental trauma that society inflicts on a patient far outlives the physical pain that TB causes.

And that’s not it. There is also the fear of what others will say if patients reveal that they have TB. Take for instance Uttar Pradesh’s Fatehpur district, where chronic TB is a silent killer. I accompanied my former boss and a crew to a few villages where house after house, TB patients recounted government apathy and social stigma as reasons for not seeking treatment. The stories of Fatehpur’s patients are also reflected elsewhere in India. Mahmood, a rickshaw puller from Mumbai refused to seek treatment on similar grounds. And down south, “People are ready to die without taking medicine because they won’t share with neighbours their TB disease,” writes CM Munegowda from the Institute of Public Health, Bangalore.

There is a large section of TB patients who suffer in similar ways, not just because they have the disease, but also because they happen to be women. A case study by the Indian Red Cross Society states that as many as 100,000 women are rejected by their families each year because of TB. Deena, a social worker says, “If it is a girl of marriageable age, her condition is hidden from potential suitors, neighbours and relatives for fear that she won’t get married.”

While many women fear rejection by their families and societies, many Indian men fear losing their jobs. In September 2015, businessman Ratan Tata said at an event in Mumbai that TB stigma “results in discrimination at schools and workplace.” This is reflected in a study by the US National Library of Medicine that statesmen are “concerned with the impact of TB stigma on their economic prospects, which include job loss and reduced income.” This stigma, coupled with the pressures of ‘being a man’ in Indian society can even lead to alcoholism and intimate partner violence.

It is important to remember that we as a society are doing far worse to TB patients than the disease actually is. We don’t flinch before perpetuating this cycle of stigma and shame. Yes, the TB burden in India needs to be heavily reduced in terms of the number of cases. But this can’t happen without first tackling the hellish situations we are creating for TB patients every single day.

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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.

Read more about his campaign.

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.

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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.

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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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