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Interview – #covid19 and conversations online: Listening in

On a black background, binary digits are displayed in white, as if on a screen. In the middle is a red heart shape, made from the binary digits.

This time, for the interview section of In Plainspeak, we started with #covid, to step into a busy space of a million voices that are speaking of personal, social, community, country and global level of life aspects online. In this flowing stream of data, we reach out randomly in any direction and find ourselves entangled with lives, identities, intimacies, relationships and rights, as all of us, in all our diversity, with all our differences and similarities, are impacted and affected. On just one platform this morning, Facebook, results for this hashtag alone are prefaced with the information ’10k plus people are posting about this’. They include professional media, government, NGOs and citizen-based collectives and movements. What are some of these 10k people saying here?

Individuals tap into the network through posts that put out requirements for others and for themselves. There are many creative ways of raising funds for organisations on the frontlines of COVID work. There are messages from the government, amongst them some about supplies and infrastructure, others advocating vaccination, and about preventive practices and behaviours. Some information on whether menstruating persons can get the vaccine (the answer to this is yes.) Companies are looking for ways to support employees through this time. We found a post about a person in Pune to contact for free autorickshaw services for COVID patients and care workers.

We found COVID-19 information specifically in the context of persons with disabilities and caregivers as well. There is now a pan-India COVID support helpline as a response to the impact of COVID on this community. Accessible information is hard to find. Media reports that the vaccine registration portal is not accessible to persons with disabilities.

Twitter is seen as having supported help requests and connecting people through networking between users. In media reports Twitter is seen as a space where “people are bypassing the conventional lines of communication” to crowdsource critical resources. Researchers undertook a study of #covid19 on Twitter. The top three themes were COVID identifying information, interventions, and geographical tagging. Of the other themes it is in the social theme that the most used hashtag emerges as #quarantinelife and includes tweets on positivity, encouragement and isolation. Under the law and order theme, researchers found tweets about security, privacy and domestic violence. WhatsApp has helplines and information, and is a steady way in which friends, familiars and families are staying connected every day, through the day, staving off some of the emotional and psychosocial impact of isolation, quarantine and lockdown.

What we do not find, in an ordinary first level scan, is data and flow of exchanges reflecting the impact and effect of COVID-19 on gender, sexuality and rights. Not that this does not exist, there are people collecting data, using data, on this theme. However, not surprisingly, it is a few layers below the surface of the #covid19 hashtag and associated online data flows and interactions. This kind of data based on sharing lived experience is hard to come by in an ordinary #covid19 search. We specifically searched then for #covid19 gender sexuality.

The first bit of data we did find was sex disaggregated data, a tracker of COVID-19 differences among women and men, called The Sex, Gender and COVID-19 Project. The home page of the project website speaks of providing “open-access data for policy makers, researchers and advocates across the globe to utilise in pushing for more equitable, gender-responsive pandemic recoveries”. The word gender here appears to adhere to the binary construct, women and men, and there seems to be no reference to non-binary experiences, nothing immediately or swiftly visible. This aligns with the mainstream method of collection and analysis of big picture data, referred to as gender-based, generally being about differences in data available for men and women. This is because, as the website states, data is collected from official government sources.

So this data is not about sexuality or gender rights, impacts, specific issues of the health, and of social, emotional and mental wellbeing in the non-binary context.

Are language, vocabulary, and data interlinked?

One may assume that data may not even be collected beyond what is identified by the language that is used to guide data collection. A WHO advocacy brief on COVID response says at the beginning of the brief that “Data (on persons tested, severity of the disease, hospitalization rates, discharge [recovery] and health worker status) that are disaggregated at a minimum by sex and age – as well as by other stratifiers such as socioeconomic status, ethnicity, sexual orientation, gender identity, refugee status etc., where feasible – could help in identifying and addressing health inequities related to COVID-19”. In the same document, there is mention of ‘other populations facing social exclusion’ and ‘gender norms’ in the same paragraph, yet elaborating on these points continues to use binary language. The advocacy brief does make a call for ‘gender sensitive research’, which at this point in time is a critical shortcoming in the design and implementation of most data collection efforts.

It is time to ask some more questions.

What would be ways we could practice a reflective, cross-sectional approach to the role of data and information in our lives?

A further exploration throws up efforts to use a more grounded and inclusive gender and sexuality rights based approach.

One study raises many pertinent points of politics, policy and public service. The author includes a range of themes in the content, beginning with the same starting point of sex disaggregated data, men and women, and then moving on to discuss intimacy, sex, relationships, violence, writing that “the lockdown and physical distancing which create this situation, are only possible for people with homes and space, and are easier in a house with a garden than in a slum, refugee camp, prison or dormitory”. This article has highlighted many other vulnerabilities of populations less spoken of such as sex workers, for whom the relationship between risk-taking and survival in this business, is directly impacted by and impacts the path of the pandemic. SRHR, contraception, abortion, the impact of COVID on the sexual and social lives of young people who are turning to online spaces more than they ever did before, these are just a sample of the diverse ways in which gender and sexuality are intersecting with COVID-19 and political and public health responses in different parts of the world. Mumbai-based Agents of Ishq is mentioned for COVID-19 specific content, for example this on do’s and don’ts, during isolation, which plainly and simply speaks of sexual behaviours and practices for people of diverse sexual orientations.

How do we use data to reclaim our bodies, our relationships and our ability to negotiate health and support services that are appropriate and specific to the people that we are, and that align with our needs?

When one takes a cross-sectional approach to just some of the aspects highlighted in these efforts, such as for example, the psychosocial needs of LGBTQIA+ persons with disabilities, it becomes overwhelmingly obvious that a far greater sensitivity and attention to detail is required for a rights and justice based COVID response assessment.

Our work on SISA (Safe, Inclusive, Self-Affirming) spaces, mental health, stress and burnout amongst human rights activists and social workers, had already flagged immediate concerns, some of which are to be found in the experiences described in this film. Based on the work of TARSHI and Nazariya – A Queer Feminist Resource Group, (QFRG), the film presents the voice of the activist, and identifies some of the manifestations of stress and burnout experienced, personal insights into activist stress, the impact of COVID-19, and the lack of spaces to speak, be heard and be understood, in this context. Overwhelming stressors include isolation, lack of access to resources including data and information, and the psychosocial and physical safety concerns of persons forced into hostile domestic space-sharing situations. People for whom family is not a space of support, people who are single, those who live with partners not recognised by the legal system, are all people living, at best, on the edge of vulnerability, many of them caught in situations of extreme vulnerability. Medical decisions, lockdown and quarantines force many into a situation with few choices except a return to hostile relationships and environments. Our network of peers and associates and our own reviews of online data validated these and other immediate concerns.

We know of organisations working on gender, SRHR, and interconnected issues on rights of people with disabilities, and people who are LGBTQIA+, who have been creating resources specific to COVID-19 and SRHR. The ongoing dialogues and efforts by organisations, groups and entities such as for example, The YP Foundation, Mariwala Health Initiative, Nazariya QFRG, the VARTA Trust, are specific to the particular situations and needs of those at the cross-sections of vulnerabilities, and focus on wide-ranging themes such as information on vaccination and menstruation, young people’s experiences of COVID-19,  investment in relief work for marginalised communities, support for transgender persons from the North East living away from home, inequity and COVID-19, violence against queer people, art and expression emerging from the pandemic, and many other aspects specific to gender and sexuality and vulnerable communities. Data pertaining to this or emerging from here is another aspect entirely, difficult to identify or source, though it exists in disconnected pockets, as numbers, as stories, not yet collated.

TARSHI has curated a number of such resources and listed them on this website, where our team regularly updates content. The content in these resources is indicative of the depth and detail required to be truly inclusive in COVID response strategies. Resources such as this online dialogue on COVID-19, gender-based violence and masculinities, point out that, “Violence against LGBTIQ people is on the increase globally. LGBTIQ people are at a higher risk of violence and abuse during lockdown due to forced cohabitation with unsupportive family or abusive partners.” This Hindi language resource raises critical questions of COVID response policies and approaches. It asks whether these are based on a knowledge of the realities within homes and families, realities such as relationship inequalities, whether and how much decision-making is in the hands of women, and the impact of not being able to access the emotional and mental support otherwise available from neighbours and friends. A resource on the impact of COVID-19 on persons with disabilities says “the area that has not received adequate attention is that of mental health. Persons with psycho-social disability, persons who require medication, persons who are connected with counsellors on a regular basis are impacted by the lockdown across the country. Strategies need to be devised to reach out to them”.

We listen, we tap in, we are part of a collective consciousness of thoughts, feelings and relationships, of negotiations between strangers and familiars, of law, policy, protocol, a being, doing and experiencing that many of us have never before seen on this scale. We are plugged in to all kinds of data from a variety of sources, through technology, and even a window view of this space is like stepping into a global COVID control data centre. We are standing up to be counted, to be seen, to do, to contribute, to advocate, to remind, to rectify and restore, to strengthen a growing network of support and response to crisis on a scale we have neither been able to process or measure.

We end with a question, to which there may be as many answers as there are people:

What are the implications and the impact of all of this on gender, sexuality and rights, for the ordinary, or not-so-ordinary, relationships, intimacies, identities and daily interactions in our lives?

Cover Image: Unsplash

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