Fighting the Stigma of Disease
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A JOURNAL OF THE PRESS INSTITUTE OF INDIA ISSN 0042-5303 April-June 2021 Volume 13 Issue 2 Rs 60 Fighting the stigma of disease – creating space for empathy Last year, when COVID-19 started to make headway into the cities of India, the disease brought with it several uncertainties and unknowns. While the CONTENTS medical fraternity worked hard to understand the virus and the disease that • Child marriages – a less-publicised it was causing, the few who began to fall prey to the virus grappled with downside of the lockdown / symptoms of another kind too – symptoms of stigma – manifesting in those Sarita Brara around them. Some were asked to vacate rented homes, some were shunned • With commercial interests gaining ground, where is school education by neighbours, healthcare workers were socially isolated, and going? / Bharat Dogra instances of malicious rumours and mental trauma began • Using radio to spreading the voices to surface. Janani Murali on how stigma traverses societal, of marginalised communities / judicial and healthcare frameworks and why building a social Alankar Kaushik support system is important to fight the stigma • Common lessons from the pandemic on the economic front / Vaibhavi Pingale OVID-19 and the virus may have been new, but stigma of disease in • Drawing the line between itself is not new to us. Centuries ago, leprosy was infamous for the information and negativity / stigma that it generated amongst the masses, across geographies N.S Venkataraman C • The gender question – forty and cultures. Seen as a deadly disease that left fingers, toes or hands and years and more later / legs deformed and incapacitated, the fear of contracting it through skin Sakuntala Narasimhan contact drove people away from those who suffered. • The good, the bad and the fake – A debilitating disease like leprosy, people assumed, would only affect coverage of an assembly election / those who had sinned. In time, lepers were shunned and lived and died in Manjira Mazumdar deplorable conditions. To be excluded from public life and be denied basic • The wait for reforms on the ground continues even after 25 years / human rights sounds harsh. To experience it must feel crushing. Kundan Pandey The fanciful thing about stigma is that it doesn’t restrict itself to any • Little Poland, a World War II story of particular kind of disease. As long as there is a fear of contracting it or hope and courage / Ronita Torcato being affected by it, very little credible knowledge about it and lots of • A celluloid tribute to the Father of Indian cinema / Shoma A. Chatterji anxiety, stigma will grow like weed in abandoned land. HIV-AIDS and • Worshipping the Goddess of War tuberculosis are leprosy pals in that sense. For long, until the second and Victory / Meenakshi Devaraj half of the 20th Century, contracting tuberculosis meant being sent away • The fall and fall of Indian tennis / to a sanitorium because there was little treatment and the disease was Partab Ramchand • A record-breaking bowler leads a highly infectious. Patients were isolated from society to prevent infect- state’s charge in Indian cricket / ing others. V. Ramnarayan Tuberculosis meant being banished from civil society – a death sen- • Remembering: Sagar Sarhadi/ tence even. With the development of antibiotics to combat the bacteria Shashikala/ Sumitra Bhave/ Anil Dharkar/ V. Chandrasekhar/ (Continued on page 3) Mario Noronha April-June 2021 VIDURA 1 FROM THE EDITOR PR takes you only up to a point; it is honesty and transparency that count e have set the world record second. According to government Meanwhile, many who have been Wfor the highest number of data, India shipped 66 million doses infected with COVID and have COVID cases a day, and also the overseas since January, enough to recovered are now trying to meet record for the highest number of vaccinate the population of Delhi, the challenge of facing up to a COVID-related deaths a day. Sto- Mumbai and Kolkata as a report certain stigma – manifesting in ries and pictures of what India has suggested. In April alone, as India’s those around them. Janani Murali been going through the past few COVID crisis went from bad to cata- describes how stigma traverses months are difficult to digest – long strophic, nearly 2 million doses left societal, judicial and healthcare lines of ambulances outside hos- the country (Quartz). Clearly, the frameworks and why building a pitals carrying COVID patients government exported vaccines to social support system is important struggling to breathe; lack of medi- boost its global image amidst the to fight the stigma. Sarita Brara tells cines, hospital beds and oxygen; pandemic but at what cost? With the story of a girl who resisted pres- patients administered oxygen in people dying and struggling to sur- sure to be sent to her in-laws before cars and ambulances outside hos- vive, India’s vaccine diplomacy lost she had attained puberty during pitals; uncontrollable grief and its sheen long ago. the lockdown in Rajasthan. She sorrow and a pervading sense of Now, after a New York Times report, was beaten up and had to be hos- helplessness and hopelessness; many are asking whether the fig- pitalised. A new analysis released the desperate struggle to survive; ures trotted out by the government by UNICEF warns that ten million scared, unemployed and hungry (Central and states) are true and additional child marriages may migrant workers in the cities forced how much is under-reporting. Just occur before the end of the decade to get back to their homes in the how big is India’s COVID death because of the pandemic. With the smaller towns and villages… I can toll? Last week, India recorded the closure of schools and limited social go on and on but this has been the largest daily coronavirus death toll access, it has become difficult for broad picture across India in April (4529) for any country during the the girls to gather support for resist- and May. Not to forget, the horri- pandemic — a figure that NYT says ing child marriage. And as Bharat fying images of floating bodies in is most likely an undercount. NYT Dogra says, the disadvantages for the Ganges and half-buried corpses consulted many experts to arrive at poorer children, rural children and in the region as deaths from the several possible estimates for the true girls have been increasing. Many country’s coronavirus surge broke scale of devastation from COVID-19 of them are also being deprived records. The general perception is in India. (As of May 26, India had of facilities such as nutrition pro- that the government has just not reported 27.16 million cases and grammes, free uniforms and books, done enough and is more con- 311388 deaths.) NYT data shows not to mention the joy of meeting cerned about shoring up its public that the “best-case scenario assumes school friends, studying and play- image. And now with India’s rural a true infection count 15 times the ing together on a daily basis. areas reeling under the pandemic, official number of recorded cases, Do take care and stay safe. the plight of people living in the and a death toll roughly double the villages can only be imagined. official count, at over 600000 deaths”. Sashi Nair [email protected] The vaccination programme got The worst-case scenario, according to off to a ‘flying’ start with the media NYT, taking into account the short- (corporate media really) doing its age in oxygen and hospital beds, Note: Many journalists in India have lost bit to show public figures, from the puts the estimated infections at over their lives to COVID in the course of work. president and prime minister down- 700 million, and deaths at 4.2 mil- Let us spare a thought for them. It is good wards, getting their vaccine shots. lion. The government, however, has to know that a few states have declared journalists as frontline workers. The Central Today, millions in all age groups in trashed the report, calling it “base- Government has not. The TN Govt has states across the country are wait- less and false”... based on “distorted doubled the solatium (compensation) to ing for vaccines to arrive – some estimates”. the kin of journalists who die of COVID to for the first dose, and many for the Rs 10 lakh. We welcome it. - Editor ************************ 2 VIDURA April-June 2021 (Continued from page 1) those infected were promptly pandering to the fear of disease that causes tuberculosis, the need labelled as morally loose and ‘to- and the diseased become the for sanatoriums disappeared. be-avoided’. Venereal diseases anchors of stigma and taboos. Over the decades, treatment has such as this invite the wrath of Rooting these anchors fur- evolved and has become sophis- the moral police; stereotyping ther are complex socio-cultural ticated. Medicines are accessible follows and brings with it social norms. Caste and class begin to to all and infection rates can be ostracization. play a role in social ostraciza- controlled. However, the visu- With anything new or unknown, tion, coupled with medical access als of faraway sanatoriums have myths start to do the rounds as or the lack of it. The unrealistic probably not left the psyche of the has happened with the COVID assumption that certain sections people who continue to be wary of pandemic. That HIV could be of society are more prone to TB patients. contracted by sitting next to an disease and infection is a deep- When HIV-AIDS was first dis- infected person or sharing a meal seated judgmental mindset that covered in India amongst sex with them became strong beliefs.