How Misinformation Spreads
A few months after the start of the pandemic, my grandmothers and aunts suddenly came upon what they believed was a new miracle solution to COVID-19. Using what they called, “Harmal ki Dhooni”, a process which includes burning Wild Rue plant to create smoke, and allowing it to fill the house, they insisted that this would keep our airways clear from the virus. While Harmal does have Ayurvedic healing properties, its high doses also have severe side effects, and like all ingredients, should be used under medical supervision. But despite asking for sources of this remedy, their reply was, ‘woh kehte hain na (it is believed),’ with no effort to seek out medical advice.
Knowing my family, I knew the source was just a forward message they received on WhatsApp. This wasn’t the first time WhatsApp had acted as a secondary doctor around me, and it certainly wouldn’t be the last. South Asian households, afterall, have a long history of traditions and advice that are passed down to generations, and with technological access, this information is shared with others at the click of a button. Health economist Saanjaana Rahman, who is currently based in New York, points out just how quickly these messages can spread. “Especially when the message includes advice from someone with ‘Dr.’ in front of the name, they would instantly take it to heart, without thinking much if the advice makes sense or whether it's a made-up name,” she says talking about elderly South Asians in particular. “I'll give you one example, there was misinformation among the elderly women spread through messaging that in order for the COVID-19 vaccine to work effectively, they shouldn't shower for a week, which many followed! Although it's funny, it shows how misinformation can spread,” she adds.
Because these are belief systems that South Asians have indulged in for so long, there’s no one rectifying much of this misinformation. If anything, the prevalence of forums like WhatsApp and Facebook groups, coupled with a general lack of digital literacy, has led to misinformation spreading even faster. Dr. Sumegha Asthana, public health expert and co-founder of Women in Global Health India, a chapter of Women in Global Health, a non-profit movement focusing on gender equal leadership and equity in healthcare, points out that much of the impact of misinformation in South Asian society is fuelled by a general lack of health awareness along with a tendency to not verify information. “Generally, when we aren’t conscious of checking sources, we are more vulnerable to accepting any info we receive,” she says, pointing out that WhatsApp is a prime example of this. The attitude towards WhatsApp as a credible source comes from a lack of awareness around double checking or trusting the networks that send this information. Lack of education, and often digital literacy, leaves women more vulnerable to misinformation because they are less equipped to check sources because of systemic barriers to literacy. This leads to their hyper-dependence on men as their source of information, even for the health related issues that men have little to no information on. These barriers and dependence can be attributed to the lack of financial, physical and even digital means to access that South Asian women live with.
Women’s Health At Risk
Dr. Rabia Nisa, a gynaecologist in Pakistan, points out that breast cancer related myths and taboos have a massive impact on women’s health in the country. With 1 in 9 women in Pakistan at risk of being diagnosed with the disease, and low rates of early detection, Pakistan has one of the highest rates of breast cancer in Asian countries. In October 2022, mass awareness raising campaigns to mark the Breast Cancer Awareness Month in the country included recorded phone messages that play while before the call is received. But while it’s important to raise awareness, the impact of such efforts will continue to remain limited if other barriers to access, including misinformation, are not removed. Dr. Nisa says, “Most women and girls don’t know how to identify changes/lumps [in their breasts]. There’s an assumption that breast cancer only happens to married women which is not true.” She adds, “Out of shyness, [women] don't tell anyone even if they do identify something wrong, and if they do tell, they are told to stay quiet. Of the small percentage that do seek help, a majority go to spiritual healers or other alternative options outside of medical assistance.”
Lack of education, and often digital literacy, leaves women more vulnerable to misinformation because they are less equipped to check sources because of systemic barriers to literacy.
The high number of ‘wellness’ pages on social media promoting vaginal washes, or cultural stigmas around period management products like menstrual cups, are just some of the common examples of myths and misinformation that are spread around endlessly through unverified forward messages.
Dr. Ishrat Mouri, a public health expert from Bangladesh, points out how she has come across cases of young women misusing birth control pills because they don’t have easy and open access to sanitary pads. “Even in Dhaka where I live, which is a big city and relatively privileged [compared to the rest of Bangladesh], we still get pads in brown paper bags and these stigmas need to change. Now we’re trying to challenge that through advertisements,” she says. Where possible, TV advertisements and SMS can get messages to a lot of people in a short amount of time, but volume alone isn’t enough to counter the epidemic of misinformation affecting South Asian women.
The general rise in the access and usage of technology has given an avenue for online health services to be accessible to women, removing the need to physically visit the clinic for healthcare which was often a hindrance. Iffat Zafar, the co-founder of a telehealth platform, Sehat Kahani, created the smartphone app specifically to cater to women in Pakistan who were disconnected from proper healthcare services. The app allows women to connect with certified medical practitioners from around the country, based on their needs. “There is a general culture that your husband will come home and take you to the doctor. By allowing women to access consultations and healthcare providers on the app, we’re reducing that dependence,” Zafar says. But she also adds that lack of literacy is also widespread amongst women in the country which becomes a barrier in access to the app and its services. “We met with women in a community in Korangi [a low-income neighbourhood in Karachi, Pakistan] while setting up a clinic. We had assumed that these women would know how to read and write Urdu but they didn’t,” she says. This lack of literacy adds to women’s lack of independence when accessing information and services online as they always need someone to help them navigate.
There is a general culture that your husband will come home and take you to the doctor. By allowing women to access consultations and healthcare providers on the app, we’re reducing that dependence. - Iffat Zafar
Priyam Nayak, a disinformation expert based in India who works with Logically India, interviewed 3 different women in rural India on the impact of misinformation during Covid-19. Nayak narrates that despite knowing how to use a smartphone, Kumari*, one of the interviewees, shared one phone between herself, her husband and her children. Women’s access to technology is not prioritised in South Asian households, especially when it is a shared device. Nayak says that it wouldn’t be wrong to expect that Kumari got the least screen time, making it further difficult for her to access credible information related to COVID-19 in India.
How Patriarchal Structures Make Women More Vulnerable
But for Nayak, the discrepancies in the impact of misinformation between men and women also has a personal touch. She shares that while her father was sent to an English medium school as a child because he was a boy, his sister was sent to a regional school and didn’t attend university. Because of that difference in access, Nayak says her father is much more aware about sources of information and who to trust, but her aunt relies mainly on Bengali news channels for her information or trusts WhatsApp messages as they are received. She adds that it does not help that most fact checking portals are in English, making it inaccessible for her aunt who can only read Bengali.
Much like Nayak in India, Dr. Ishrat Mouri also witnessed language becoming a barrier in accessing credible healthcare related information in Bangladesh when she started working on tele-clinics in 2015, and says that this became more prominent during COVID-19 when telehealth services were in most demand. Dr. Mouri, who also co-founded Women In Global Health Bangladesh, says that she noticed a common trend during her tele-clinic consultations: many times women would communicate with the doctors through their husbands who would also deny the request to speak to the woman directly. According to her, “[Men] often think if the doctor tells their wife something directly, they will be more knowledgeable and won't listen to the husbands.”
For many South Asian women, even being able to access teleclinics – no matter how – is a privilege in itself. Dr. Sumegha Asthana, the public health expert at the Women in Global Health India, says, “Many women in India still go to informal health providers, faith healers, and other alternative medicine providers who are part of their local communities and who themselves did not have the technological access to switch to providing online services.” She also brings attention to the fact that unsafe abortions increased drastically in India under COVID-19 restrictions. “There’s hardly any way for so many women to get verified information about safe abortion. It’s not just COVID-19 related misinformation, but also about dangerous tools they use to abort pregnancy,” she says.
For many South Asian women, even being able to access teleclinics – no matter how – is a privilege in itself.
The constant influx of this misleading and harmful information, and the inability to reduce its impact, have affected women’s mental health along with physical wellbeing. Sehat Kahani, the telehealth service in Pakistan, has initiated mental health relief work in many of the communities it set up clinics in, but progress has been slow because of the stigmas associated with mental health despite the prevalence of mental illnesses that the team has noticed during its medical consultations. “Most patients initially don't realise they have mental health issues, they come with symptomatic issues such as back aches or shoulder aches, and it’s only when you dig deeper that you realise that it’s mental health related,” Dr. Iffat Zafar, co-founder of Sehat Kahani, says. She adds, “You say ‘mental health’ and people think they have been called crazy. It’s not easy to make them believe that it is manageable."
The glorification of women’s domestic labour through memes and jokes establishing that women can go about their day per usual even when sick, but men can’t lift a finger when they catch a flu, adds to the notion of constantly neglecting the needed treatment and rest that women need. Dr. Iffat Zafar points out, “Women don't have caregivers for themselves, even if they’re sick, they’re expected to cook, clean, and take care of everyone. There’s this glorification of women’s labour, and women themselves play a large role in this as they associate their value with their contribution to the house.”
Because of the complex factors that intersect to shape women’s experience with health misinformation in South Asia, an individual focused solution is not enough. Alongside individual efforts to fact check and emphasis on women’s wellbeing, there’s a broader national level responsibility that governments need to uphold. Dr. Asthana of Women in Global Health India, says, “If [governments] can't effectively regulate [misinformation on] informal channels like social media, they can certainly create parallel channels [like websites and dashboards] where people can come for regulated and credible information.”
Debunking stigmas and myths, and teaching people how to fact check information should also be part of formal education curriculum, and eventually even in households as a way of challenging both health myths and gendered structures. Media should also work in collaboration with such initiatives to raise awareness around misinformation and how to counter it. Dr. Rabia Nisa, the gynaecologist from Pakistan, also believes that healthcare workers have a responsibility to counsel patients, and that local health workers need to be equipped to provide the correct information to patients as well.