This article addresses the role of data in efforts to contain the COVID-19 pandemic in Africa. Drawing on multiple state examples, it discusses the ethical questions posed by datafied public health surveillance and the importance of harmonising national data protection systems.

 

By Oarabile Mudongo

COVID-19 presents a dynamic overtone of an African society encountering digital data transition in almost every aspect of human activity, from digital contact tracing to surveillance, all initiated by governments to help control the spread of COVID-19.

The number of confirmed cases of COVID-19 in Africa remains comparatively low, as reported by the World Health Organization (WHO) there are over 200,000 confirmed cases as of 1st June. However, these numbers are growing. A newly published report by the Partnership for Evidence Based Response to COVID-19 (PERC) exposes some of the alarming findings of the devastations of COVID-19 across Africa, with the head of WHO cautioning African states to prepare for the worst.

As African governments continue with their efforts to track people exposed to coronavirus and combat its spread, several countries in the continent have adopted various techniques such as digital contact tracing technologies (mobile apps using Bluetooth), data mining and sharing of aggregated geolocation data from mobile operators. In South Africa, for example, researchers at the University of Cape Town are developing a COVID-19 app to assist the government track COVID-19 positive cases, and also mobile operators are sharing phone location data about movements of people. While on the other hand, the government through a partnership with Telkom and Samsung alongside the National Institute for Communicable Diseases (NICD) and the Council for Scientific and Industrial Research (CSIR) are developing a novel track and trace system that identifies infected people.

Furthermore, the Botswana government has also announced a contact tracing app that centralizes people’s data in the government-owned database whereas in Kenya the state is surveilling mobile phones of individuals who are on self-quarantine and detaining those who contravene the restrictions imposed on movements. In general, it is still unclear which countries in Africa are utilizing technology-driven disease surveillance tools except for a few countries mentioned above. If ignored and remain unchallenged, this adopted measures and tools being used have the potential to fundamentally violate personal privacy and other human rights.

In addition, these measures are likely to exacerbate unlawful discrimination and may disproportionately cause harm to minority groups. For instance, Telkom and Samsung are reportedly in talks with SA authorities to track those with COVID-19. The South Korean technology company Samsung, which recently faced some questionable ethics problemson its AI surveillance technology is now proposing to develop a big data analysis tool for the government which claims to track the spread of COVID-19 by tracing people’s movements. The problem with some of these tools deployed is that they use obscure algorithms, which may influence biased decision-making and contribute to discrimination.

At the helm of a datafied society is the amount of digital footprints people leave behind while accessing the internet, from monitoring movements of people and state output to targeted advertising online and the digital contact tracing apps developed to track COVID-19. Though many people may not remember every place they’ve visited, governments have the capacity to use digital trails to fill in the missing information on COVID-19 infected patients’ activities. For instance, in South Africa the government is working with mobile operators that are sharing cellphone data to trace people’s movements in response to COVID-19 pandemic.

Although these may be well-intentioned efforts by African governments, some COVID-19 surveillance and data mining interventions have been implemented with limited oversight structures. In addition, this has sparked debates around the ethics and legality of disease surveillance, and WHO has developed guidelines on ethical issues in public health surveillance. These guidelines must be considered to assist policymakers and health practitioners navigate the ethical issues presented by public health surveillance.

While Africa’s data protection landscape is somewhat evolving, on a regional level, the Economic Community of West African States (ECOWAS) adopted a Supplementary Act on Personal Data Protection and in 2013, the Southern African Development Community (SADC) published a Model Data Protection Act. Additionally, in 2014, the African Union adopted the Convention on Cyber Security and Personal Data Protection (the Malabo Convention). These measures demonstrate and support the adoption of data protection laws in the continent. Despite the regional organizations’ efforts, the overall legislative framework is not fully harmonized.

Nevertheless, COVID-19 has continually revealed the existing lack of collaboration and communication amongst states, intergovernmental organisations and mobile operators about the role technology plays in shaping public policy during COVID-19 pandemic. This is a complex issue that has proven a disconnect between society and governments exacerbated with suspicions and mistrust. Going forward, African governments need to scrutinize these concerns while acknowledging extraordinary circumstances that require stakeholder engagement.

Surveillance or monitoring measures should adhere to national laws and be limited in their scope to fulfil the aim of public health protection. These measures should be established as temporary and be limited as required to meet the needs of the public health emergency, with safeguards to protect human rights and any misuse of technologies by either private corporations or governments who may use the data for unlawful purposes.

Human rights principles reinforce the effectiveness of global efforts to combat COVID-19, creating a balance between the right to health and the protection of fundamental rights and freedoms is the best approach to fighting the pandemic. These principles are in fact intertwined. If human rights are protected and well respected by authorities, user confidence is also gained and the ability to contact tracing tools to provide support for public health authorities achieves the intended goals.

 

About the author

Oarabile Mudongo is a technologist and a Ford Foundation / Media Democracy Fund Technology Exchange (Tx) fellow. He works with Research ICT Africa as a Research fellow on the Africa AI Policy Project (AIAPP) mapping Artificial Intelligence (AI) usage in Africa and associated governance issues affecting the African continent.

COVID-19 from the Margins was launched at the beginning of May 2020 as a multilingual blog platform, with the aim to give voice to narratives on the pandemic from social groups and individuals invisibilized by mainstream coverage and policies.. Two months down the line, we reflect on the core threads emerged so far, with a look to the future of South-based narrations of the first pandemic of the datafied society.

by Silvia Masiero, Stefania Milan and Emiliano Treré

 

Since the World Health Organisation declared the outbreak of COVID-19 a pandemic on 11 March 2020, narratives of the virus outbreak centred on counting and measuring have became dominant in public discourse. Enumerating and comparing cases and locations, victims or the progressive occupancy of intensive care units, policymakers and experts alike have turned data into the condition of existence of the first pandemic of the datafied society. However, many communities at the margins—from workers in the informal economy to low-income countries to victims of domestic violence—were left in the dark.

This is why our attention of researchers of datafication across the many Souths inhabiting the globe turned into the untold stories of the pandemic. We decided to make space for narratives from those individuals, communities, countries and regions that have thus far remained at the margins of global news reports and relief efforts. The multilingual blog COVID-19 from the Margins, launched on 4 May 2020, hosts stories of invisibility, including from migrants and communities living in countries and regions with limited statistical capacity or in cities and slums where pre-existing inequality and vulnerability have been augmented by the pandemic. In entering the third month of this initiative, a reflection on the main threads emerged from the 28 articles published so far is in order to devise our look to the future. In what follows, we identify four threads that have informed discussions on this blog so far, namely data visualisation, perpetuated vulnerabilities and inequalities, datafied social policies, and digital activism at the time of the pandemic.

Human invisibilities: Counting at the time of the pandemic

The inaugural piece of COVID-19 from the Margins pointed to the widening data divide that communities in the Souths are subjected to. In a strong exemplification of this problem, the blog hosted a contribution exploring conditions of (in)visibility affecting migrant communities during the pandemic, raising concerns about a just data management applied to populations on the move. As it became publicly noticeable in this global health crisis, data visualisation has important implications for data interpretation and management: a recent post from Italy narrates how local communities make sense of data, building collective learning experiences in the process. Consequently, the blog has turned to those communities whose vulnerability results in particular needs for visibility and visualisation.

Feminist data visualisations, giving visibility to statistics on impacts of COVID-19 on domestic violence and female education rates, offer a means to deal with one such vulnerability. Children from families affected from poverty and precariousness, as well as communities working in the informal sector of countries affected by the pandemic, need to make themselves visible to the state to become the recipients of social policy measures such as subsidies that are vital in situations of crisis. Through multiple narratives from the world, posts published on this blog have revealed the key role of (good) data visualisation in times of crises, and its consequences on governments’ ability to cater effectively to vulnerable groups.

Perpetuated vulnerabilities and inequalities

Authors writing for the blog have illuminated the situations of perpetuated vulnerability affecting a variety of communities during the COVID-19 emergency. In a post on the struggles experienced by the LGBTQ+ community it has been noted that, as “stay at home” becomes the new normal, ingrained societal prejudice may result in leaving LGBTQ+ community members without a home to stay in. An article on the struggles of digital economy workers, specifically ride-hailing workers in Brazil, has observed the perpetuation of uncertainty under COVID-19, leaving workers unable to hold public and private entities accountable for the health and economic risks suffered under the pandemic. A post on the emergency in São Paulo, Brazil, has illustrated the perpetuation of socio-economic inequalities under the pandemic, with historically poor and disadvantaged areas of the city suffering the most serious consequences of the health crisis.

Along these lines, one of our opening posts had already noted that, in times of global crisis and vulnerability, ordinary measures of social assistance acquire special importance for those affected. In this light, the narratives of perpetuated vulnerability and inequality unfolding under the pandemic become crucial, as they highlight critical situations that—crystallised under the context of the global crisis— require ad-hoc forms of intervention to limit the profound socioeconomic impacts of the health emergency.

Datafied social policies: A new importance under COVID-19

As national lockdowns, translating into different measures across the world, took hold of civil societies during COVID-19, vulnerable groups including below-poverty-line households, refugees, internally displaced persons, and workers from the informal sector whose income depends on the outputs of daily work, have been disproportionately affected by the crisis. Stories from Argentina, Brazil, Colombia, India, Peru and Spain have highlighted the importance of social policies in emergency, as well as the consequences of datafication on such policies in the current time. While portraying different country cases, these narratives find at least two common denominators. Firstly, they point to the importance of information in devising social protection policy, and primarily, information on who is entitled to emergency assistance and on the size of such entitlements. Datafication reifies existing determination of entitlements and, in the cases of narrow targeting narrated on this blog, it exposes the consequences of making social assistance conditional to strict entitlement criteria.

A second theme exposed by the blog points to the problematic consequences of making social welfare conditional to digital identification, in a time at which vulnerability is heightened by the crisis. In India, where security concerns have emerged around the national contact-tracing app, a pre-existing ecosystem of digital identification centred on Aadhaar (the largest biometric database worldwide) has revealed the perils of perpetuating biometric access to social protection during lockdown. Such perils pertain to the use of biometrics as a means to combat inclusion errors rather than wrongful exclusions, contributing to ban access for the non-entitled but not to ensure access or data justice to the wrongfully excluded. The reshuffled priorities of the global emergency posed by COVID-19 powerfully illustrate such issues, effectively questioning the ethics of targeting and its impact on social assistance programs.

Digital and Data Activism during COVID-19

Narratives of digital power from multiple contexts, including China and Russia, have been explored in relation to COVID-19. These narratives have been key in formulating questions around digital activism during the pandemic, interrogating the affordances of extant platforms on providing information and support to vulnerable groups during the crisis. A post from Argentina explored the usage of the instant messaging service WhatsApp in coordinating solidarity groups catering to vulnerable people, while a post centred on Latin America provided context on the anatomy of biopolitics experienced during COVID-19. In continuity with such discourses, one of the most recent posts published on the blog discusses citizen sensing as an affordance of activism in the datafied society, exploring the implications of such a practice under COVID-19.

In appraising the perpetuation of socio-economic vulnerabilities under the pandemic, understanding the affordances of digital platforms in catering and giving voice to the excluded is crucial. It is also of primary importance to understand the risks posed by datafication in the current scenario, and to balance considerations of privacy and security with such affordances. In the present situation, the devising of novel means of digital activism respectful of social distancing measures—such as the digital march of Desaparecidos’ mothers in Mexico—exposes the new facets that activism may acquire under the predicaments of COVID-19.

Looking forward                                                                  

As the blog enters its third month of activity, reflecting on the medium and long-term consequences of the pandemic—with lockdowns progressively being eased in many corners of the globe and yet more vulnerabilities unfolding for the communities narrated here—will be crucial. In this rapidly evolving scenario, we remain committed to giving voice to global, multilingual narratives about the effects of the pandemic on the Souths, in the hope of consolidating the blog as a space for the multiple, different untold stories of COVID-19 from the Margins to be narrated, amplified and circulated.

by Marie Petersmann and Anna Berti Suman

 

Read Part I, published on June 30th

Citizen Sensing: From Sensing Radiations to COVID-19

In the immediate aftermath of the disastrous earthquake and tsunami that struck eastern Japan on 11 March 2011 and the subsequent meltdown of the Fukushima Daiichi Nuclear Power Plant, accurate and trustworthy radiation information was publicly unavailable.

Against this backdrop, a volunteer-driven non-profit organization called Safecast was formed to enable individuals ‘to monitor, collect and openly share radiation measurements’ and other data on radiation levels. The initiative ‘mobilized individuals and collectives’ in response to risks that were perceived as extremely urgent to monitor, namely the post-Fukushima radiations burdens. Safecast can thus be regarded as a ‘shock-driven’ initiative that constitutes a ‘successful [example of] citizen [sensing] for radiation measurement and communication after Fukushima’. As this initiative grew quickly in size, scope and geographical reach, Safecast’s mission soon expanded to provide citizens worldwide with the necessary tools they need to inform themselves by gathering and sharing accurate environmental data in an open and participatory fashion. Through a form of ‘auto-empowerment’, Safecast participants were able to monitor their own homes and environments, thereby ‘free[ing] themselves of dependence on government and other institutions for this kind of essential information’. As described on Safecast’s website, this process gave rise to ‘technically competent citizen science efforts worldwide’.

Reaction

Following the outbreak of COVID-19, the Safecast collective engaged in a rapid response to the virus by setting up an information platform on the evolution of the crisis and a map of COVID-19 testing that provides a picture of where to obtain testing options in various locations (see covid19map.safecast.org). Over the years, Safecast had accumulated much experience and insights on ‘trust, crisis communication, public perception, and what happens when people feel threatened by a lack of reliable information’. Yet, the Safecast collective still struggles to be heard as ‘many scientists ignore their data’. Despite this scarce official recognition, Safecast took advantage of its experience and societal impact to rapidly respond to the current pandemic.

As observed by Safecast volunteers, ‘[w]e find ourselves again trying to better understand what is happening’. In a webinar on ‘Lessons we are learning from the COVID-19 pandemic for radiological risk communication’, Azby Brown (as volunteer at Safecast and director of the Kanazawa Institute of Technology’s Future Design Institute in Tokyo) drew several links between the nature of ionising radiations and the COVID-19. By alluding to the invisible presence and constant risks posed by such hyperobjects, the invitation to the webinar started by highlighting that ‘[y]ou can’t see, smell, or taste it, but it may be a problem’, which applies equally to radiations as well as viruses. Elsewhere, Brown observed that:

Fear of the unknown is normal, and radiation and viruses are both invisible threats that heighten anxiety. Most people have almost no way to determine for themselves whether they have come into contact with either of these threats, and they find themselves dependent on specialists, testing devices, and government and media reports. If the government and media do not provide clear, credible explanations and prompt communications, misinformation and mistrust can easily take root and spread.

For Brown, Safecast could provide a relevant risk communication perspective in the current COVID-19 context based on the experience gained after the Fukushima disaster. Despite major differences between ionising radiations and COVID-19, similarities in risks communications are worth exploring. 

Analogous governmental failures on risk communication were observed regarding, for example, shortcomings in rapidly conveying clear messages to the public and communicate strategies based on non-conflicting expert and policy opinions. The ambiguous and incomplete information received from the authorities generated a sense of uncertainty and distrust for many citizens dependent on single sources of official information. Against this backdrop, initiatives such as Safecast that enable people to control and monitor the presence and degrees of certain risks provide an alternative source of credible crowdsourced information. Beyond the immediate informational benefit for sensing citizens, such tools can further enable holding governments and officials into account.

A global phenomenon

At the time of writing, citizen sensing initiatives tackling COVID-19 are multiplying around the world (as listed here and here or exemplified here). Such citizen sensing practices ‘constitute ways of expressing care about environments, communities and individual and public health’ (Gabrys, at 175). As argued by Gabrys, these practices ‘are not just ways of documenting the presence of [threats]’ but are also ‘techniques for tuning sensation and feeling environments through different experiential registers’ (Ibid, 177). Granular monitoring by sensing citizens is seen as particularly valuable in times of emergencies, when governments are faced with urgent, massive and systemic risks of spatial and temporal scales that defy immediate control – such as the current pandemic.

Civic ‘sentries’ can both offer relief to affected people through solidarity networks and provide resources to policy-makers and scientists through wider access to grassroots-driven and situated information ‘from below’. Citizen sensing initiatives also enable lay people, turned into ‘sensing citizens’, to retain a greater degree of agency over the production and use of the data assembled. Against the ever-increasing rise of ‘bio-surveillance states’ and the development of ‘symptoms-tracking’ and ‘contact-tracing’ apps, ‘bottom-up innovations’ might help to counter the acceleration of ‘digital surveillance’ that may be hard to scale back after the pandemic.

Open access citizens’ sensed data may be considered more transparent and trustworthy by the public and convey important information on widely shared everyday lived experiences. By rendering data about real but invisible threats (and how these are perceived and felt) available through the intermediary of sensing citizens, a redistribution of (access to) information and agency in knowledge production is enabled. Finally, the increased ‘(datafied) relational awareness’ and ‘forms of correlational sight’ (Chandler, at 130) that are produced can create new appreciations of inherent yet invisible connections between human and non-human coexisting lifeforms.

Concluding thoughts

As hyper-objects, both the COVID-19 and climate change defy not only our understanding but also our control. Their causes and effects are so massively dispersed across space and time that they evade unmediated appearance. The impacts of hyperobjects operate through forms of ‘slow violence’, which are ‘often attritional, disguised, and temporally latent, making the articulation of slow violence a representational challenge’ (Davies, at 2). Only partial, local and deferred manifestations can be captured through experience. Our way of relating and responding to such hyperobjects depends on temporal, spatial and emotional predicaments. The more temporally immediate, spatially proximate and emotionally tangible the threats of hyperobjects are, the greater and quicker our responses tend to be. Temporal, spatial and emotional scales are central to our ability to sense the presence of invisible threats such as viruses and changes in the climate.

While socio-ecological threats posed by climate change have been present for decades and increasingly materialized across the globe in recent years (for certain peoples more than others), responses remained relatively marginal in light of the risks at stake. Conversely, while the (health) threats posed by the COVID-19 are of a relatively shorter-term (leaving aside the longer-term consequences of the socio-economic crisis it engendered), those risks triggered immediate and radical responses. The fact that the COVID-19 is sensed as a ‘direct risk’ to individuals or vulnerable relatives prompts instant reactions. The sensed proximity (both temporal and spatial) of the invisible threat points to important questions.

The current pandemic brought to light what climate activists deplored for long, namely that we tend to care more for risks posed to our individual conditions. A sense of emotional distance is generated by spatial and temporal gaps. This self-centred sentiment is reinforced by an anthropocentric appraisal that limits our ethics of care to the sole concern for the human species, instead of striving to ‘support the flourishing of other animals and natural things’ with which we are intrinsically entangled. While pessimistic projections on climate change have often been framed as triggering a sense of denial, paralysis or aporia, the current pandemic shows how emotions such as fear, anxiety and dread can also lead to mobilization, collective concern and action.

Emotions are, ultimately, about social movement, stirring and agitation: the root of the word ‘emotion’ is the Latin emovere, which implies both movement and agitation. Despite serious risks of strategic exploitation of fear or despair by political actors instrumentalizing a ‘state of exception’, such emotions can also unleash an enhanced sense of solidarity and cohesion through increased awareness of our fragile state of coexistence and new forms of collective attachment. This is true at the human level – as we saw emerging a myriad of new forms of ‘social proximity’ – but also at a ‘more-than-human’ level, by inviting to be alert and attentive to ‘humans’ impact on and interdependence with the ‘natural’ world we are part of. Such sensibilities can give rise to a sense of cross-species shared vulnerability, where hope and grief enable to re-envision different forms of ‘collaborative survival’ (Tsing, at 4). In this short blogpost, we did not tackle any of these ethical questions in depth.

More modestly, we explored how citizen sensing initiatives can help bridging the temporal, spatial and emotional distance between human (re)actions and present, yet invisible, threats through self-production of independent knowledge and agency. As Gabrys reminds us:

These practices are not just ways to rework the data and evidence that might be brought to bear on environmental problems. They are also ways of creating sensing entities, relations, and politics, which come together through particular ways of making sense of environmental problems (Gabrys, at 732).

We argued that, by recasting the actants and subjectivities involved, the technological and data-based sensors used by ‘sensing citizens’ have a world-making effect by facilitating awareness and intelligibility of certain threats. While physical isolation is being implemented (almost) globally, this doesn’t mean that we need to feel isolated and powerless. Daily citizen science is all about re-imagining scales and the potential of working together to provide a sense of connection and purpose. In reconfiguring the ‘distribution of the sensible’ – as a ‘system of self-evident facts of sense perception that simultaneously discloses the existence of something in common and the delimitations that define the respective parts and positions within it’ (Rancière, at 12) – new avenues are opened up for citizens to foresee, understand and visualize threats, and ‘(ac)count’ the damages caused (Bettini et al., at 6 and 8).

Beyond the realm of immediate perception and individual or collective (re)actions, decentralized, grassroots-driven and cooperative sensing technologies may also redistribute agency to challenge more ‘official’ monitoring infrastructures and hold actors into account to galvanize appropriate political responses. Politics, ultimately, ‘revolves around what is seen and what can be said about it, around who has the ability to see and the talent to speak, around the properties of spaces and the possibilities of time’ (Rancière, at 13). These configurations of the sensible, we argue, provide an important terrain for rethinking the politics of hyperobjects such as the COVID-19 and climate change.

 

About the authors

Marie Petersmann is postdoctoral Research Fellow (Swiss National Science Foundation) based at the Copernicus Institute of Sustainable Development, Utrecht University. Anna Berti Suman is NWO Rubicon postdoctoral researcher at the Tilburg Institute for Law, Technology, and Society, seconded at the European Commission Joint Research Center (JRC) – Digital Economy Unit.

by Marie Petersmann and Anna Berti Suman

Adapted from Petersmann, M. and A. Berti Suman, Sensing COVID-19 and Climate Change. Environmental Law Blog, May 2020.

Over the past weeks, a plethora of articles explored the relations between the COVID-19 crisis and the climate catastrophe by framing the former as an opportunity to learn lessons for tackling the latter. Among the firsts was an essay by Bruno Latour, inviting us to address the current pandemic as a ‘dress rehearsal’ that incites us to prepare for climate change. Elsewhere, Latour argued that the pandemic had ‘actually proven that it is possible, in a few weeks, to put an economic system on hold everywhere in the world and at the same time, a system that we were told it was impossible to slow down or redirect’. Yet, despite the fact that both events constitute globally shared ‘collective’ experiences, immediate societal responses to them vary greatly. While both events are partially intertwined in their causes and effects, their differences in spatio-temporal scales and socio-ecological implications make socio-political responses to them difficult to compare.

Of course, this is not to say that links between the two events do not exist. The outbreak of the zoonotic COVID-19 is entangled with multiple and often interacting ‘threats to ecosystems and wildlife, including habitat loss, illegal trade, pollution, invasive species and, increasingly, climate change’.

Impacts
On a positive note, we observed a widely shared enthusiasm among the climate scientific community when the measurements of the European Copernicus agency registered an unusual drop in nitrogen dioxide levels in February 2020, as analysed by NASA’s ground observation team. The COVID-19 is indeed set to have caused the ‘largest ever annual fall in CO₂ emissions’, more than during any previous economic crisis or period of war. Studies also showed, inversely, that low levels of air pollution may be a key contributor to prevent COVID-19 deaths. Finally, the plunging demand for oil wrought by the COVID-19 was said to have permanently altered the course of the climate catastrophe. As a result, after 2019 being coined ‘the year of climate consciousness’ with a ‘growing momentum’ for climate activism, the current drop of atmospheric pollution was welcomed as a windfall by many.

A call for caution was, however, voiced by those who plead for more nuance and refrain from granting agency to the virus itself, pointing instead to the temporary retreat from capitalism’s ‘industrial production and its handmaidens’ to explain the current low emissions. Although praised by many as a ‘catalyst for transformation’ that brings about ‘an unprecedented opportunity to rethink how our beliefs, values, and institutions shape our relationships’, on the long run, the economic crisis triggered by the COVID-19 may well lead to a suspension of adopted and prospective climate measures. Circular economists and de-growth advocates also pointed to the short-term risks that the pandemic may trigger by increasing the use of private transportation means or the consumption of single use plastic (including gloves, masks and disposable cups in bars). This has led certain cities, such as Amsterdam, to pro-actively consider the ‘“doughnut” model to mend the post-COVID-19 economy’, bearing in mind that ‘calls for solidarity with the weak and disadvantaged must be part and parcel of [such] shifts’.

Ultimately, the fact that even in a world that has come to a halt, we still fall short of the emission targets needed to keep global warming from surpassing 1.5 degrees Celsius above pre-industrial levels, shows the structural and systemic deficiencies we need to deal with and signal ‘how much further there is to go’.

Towards sensing engagement
Whether or not the COVID-19 crisis will be beneficial for tackling climate change on the long run beyond the immediate drop in atmospheric pollution remains, thus, a question open to debate, which outcome will dependent on the political will of states, corporations and citizens. Our purpose here is not to add one more proposal to the existing ‘menu’ of policy goals for the post-COVID-19 time to come. Neither do we wish to celebrate the environmental impact of the corona crisis, which feels inappropriate at a time when many are suffering from the disease and its related harms (from dead relatives that could not be buried, bodies that decomposed in trucks for overflow storage in funeral homes, unprecedented unemployment rates, soaring queues before food banks or unaffordable medical bills) and others are sacrificing themselves ‘at the front’ of the health emergency. Instead, our objective is to explore how the turn to sensing as a distinctive mode of engagement with socio-ecological issues can be productive to (re)imagine and address ongoing events such as the COVID-19 and climate change.

In line with Fleur Johns, ‘[s]ensing, in this context, refers to the work of eliciting, receiving, and processing impressions and information, both in the mode of intuitions or feelings, and in terms of data’ – it ‘includes all bodily faculties of perception, but is not restricted to corporeal sensation, individual or collective’. Sensing, as such, ‘is never just about the body, as distinct from the mind’ (Johns, at 60-61).

In the next section, we start by theoretically defining and elaborating on the potential of sensing as a way to cope with events like the current pandemic and climate change, which call for a different (re)configuration of existence. We see the turn to sensing as responding to Donna Haraway’s invitation to ‘stay with the trouble’ of living and dying together on a damaged earth, perceived as more conducive to the kind of thinking that would provide means to build more liveable futures. We then turn to specific examples of ‘citizen sensing’ initiatives and conclude by questioning how the insights drawn from such ‘sensing practices’ can be fruitful to cope with the risks associated to the corona crisis and climate change.

1) Sensing the Unknown

Both the COVID-19 and climate change are examples of ‘hyperobjects’ – a term coined by philosopher Timothy Morton to refer to entities that are so massively distributed in space and time that they defy not only our understanding but also our control. The COVID-19 cannot be seen, yet its latent presence is everywhere. Gone pandemic, the COVID-19 cannot be contained nor controlled, only its effects can be mitigated through specific ‘guidelines’ and ‘physical distancing’ (a survival tool revealing inequalities that span across class, gender, race and mental health dimensions). Similarly, climate change affects us all (unequally), despite it being ‘almost impossible for changes in climate to be perceived through individual experience’ (Bauer and Bhan, at 19). Both the COVID-19 and climate change share the characteristics
that Morton ascribes to hyperobjects: they are ‘viscous’ (they ‘stick’ to us); ‘nonlocal’ (their overall effects are globally distributed across space and time); ‘phased’ (we can only experience local manifestations of them at any one time and place) and ‘inter-objective’ (they are intertwined with other objects to which they cannot be reduced). Their reality and existence challenge human perception and imagination. The objects under concern remain, in other words, elusive or invisible, although their reality is unquestionable. While they defy, as a whole, immediate and unmediated human experience, we can, however, sense their existence and omnipresence.

Against this backdrop, speculative approaches dispense with necessary (phenomenological) correlations between knowledge and first-person experience, and recognize the limits of human thought and imagination to relate to events or entities that humans do not perceive directly. They invite us, instead, to empathically relate to such events and sense their effects even without unmediated access to them. While the realm of ‘experience’ is limited to ‘actual observations’ and the process of ‘learning by practical trial or proof’, the definition of ‘sense’ alludes to the ‘faculty of perception [and] feeling’. As such, it refers both to the detection of certain parameters and the emotions associated with what is revealed. Seen through this prism, sensing aspires to emotionally relate to the distress caused by certain events, whether the harm directly or only indirectly impacts us as human being. In other words, it is an invitation to engage creatively, imaginatively and speculatively with such events beyond immediate human representation and experience, in order to sense their constantly present and emerging effects in the sphere of the actual. As Morton puts it, the mere fact of thinking their existence – or sensing their effects – requires us to care about such hyperobjects.

Governments

From a governance perspective, a number of studies showed how a turn to sensing can be productive to re-envisage political perspectives and legal approaches to reconsider the more-than-human world we inhabit. As elaborated by David Chandler, sensing as a form of governance is based on correlation rather than causation, and depends on the disposition to ‘see things in their process of emergence or in real time’ (Chandler, at 22). The deployment of sensing through new technologies can play a decisive role in environmental politics, by inspiring awareness and mobilizing publics. These forms of ‘material participation’ can facilitate the capacity to detect the effects of relational interactions and cast them as either problems or possibilities. As such, ‘biosensory techniques’ can make ‘imperceptible harms perceptible’, ‘knowable’ and ‘measurable’ and permit ‘a growing awareness of planetary life’ (Johnson, at 284-285).

By producing ‘forms of correlational sight’, the effects of interactions between entities are rendered perceptible, and enable ‘new forms of (datafied) relational awareness’ (Chandler, at 130). At a local level, the use of sensory technologies by individuals or communities allows for grassroots-driven, bottom-up and auto-empowering engagement with and responsivities to certain threats. Such engagements ‘“empower” citizens by shifting the infrastructures, technologies and practices of monitoring to less institutionalised arrangements’ (Gabrys, at 177). From this perspective, ‘sensing citizens’ are seen as part of ‘material-political arrangements and struggles over who generates, legitimizes, and has authority over data and how data is mobilized to make claims for environmental and other rights’ (Ruppert, Isin and Bigo, at 6). With the burgeoning trend towards a ‘digitalization of mainstream environmental and climate governance’ (Bettini et al., at 2), technology plays a key role in the constitution of socio-ecological assemblages, and promotes a novel ontology that changes the very nature of liberal governance (Beraldo and Milan, at 1).

Citizens using sensing technologies are thereby recast as a ‘geo-socially networked community of sensors’ (Chandler, at 158). As such, they are able to ‘make visible politically masked risks’ and claim back their agency in shaping responses to the socio-ecological issues at stake. In the next section, we will explore how forms of ‘citizen sensing’ can facilitate individuals and communities who are sensitive to the material, interdependent world they are part of, to act as proactive agents in their own governance and through responsive care.

 

Read Part II

About the authors

Marie Petersmann is postdoctoral Research Fellow (Swiss National Science Foundation) based at the Copernicus Institute of Sustainable Development, Utrecht University. Anna Berti Suman is NWO Rubicon postdoctoral researcher at the Tilburg Institute for Law, Technology, and Society, seconded at the European Commission Joint Research Center (JRC) – Digital Economy Unit.

This article addresses the importance of WhatsApp during COVID-19 times in Argentina. It analyzes the use of WhatsApp amidst informal and institutional actors and the bridges it has built for interacting, communicating and creating communitarianism.

by Raquel Tarullo*

Circles of friends, members of sports clubs, parents associations and work colleagues are new actors that have come along with the pandemic in Argentina to provide, in the emergency, food and clothing for thousands of families who live in poverty. These groups, that are neither social movements nor civic associations, use their WhatsApp contacts and the groups they have on this social network to promote, by using distribution lists, their food drives to prepare meals they deliver once a week.

Parallel to this trend, teachers of schools with vulnerable student bodies find in WhatsApp the channel for communicating with families and, in some way, accompanying students in what the government has called ‘Pedagogical Continuity Plan’, as most of them do not have access to the internet or technological devices. Moreover, teachers use this platform for sharing useful information with these families, such as state assistance payment calendars and the WhatsApp direct line for reporting gender or familiar violence.

A universal platform

In Argentina, WhatsApp has become the best ally for an activism that has introduced new actors and new practices since national government established a severe lockdown on 20 March. This platform is used by groups of people that have organized themselves to prepare meals for those poor families that COVID-19 has enormously hurt. Besides, WhatsApp is the only channel that teachers of schools with vulnerable student bodies have not only for interacting with their students’ families, but also for being a communication bridge between the government and their students’ families. Why do they both use WhatsApp? Because the use of this platform in Argentina is almost universal: more than 90 percent of the population use this channel to stay connected and communicate, sharing statuses, selling goods and spreading news. Currently, it is also used for performing micro repertoires of activism.

More than a half of kids and teenagers live below the poverty line in Argentina. According to the last UNICEF report of COVID-19 effects in the country, that percentage will reach 58 percent by the end of this year. Even though the national government has taken socioeconomic measures to maintain the situation under control, such as the Ingreso Familiar de Emergencia (Emergency Household Income), a state assistance for poor families, and zero interest rate loans for the self-employed with minimum or low income, the great majority of Argentines has been suffering a series of crisis that in recent years have widened gaps greatly.

One half of the country’s workforce get about in an informal economy, working under the table and surviving on changas(occasional one-day job that allows for minimal daily sustenance). Besides, cartoneros/as, who live from the sales of disposed garbage items, are part of this vulnerable group. This segment is the most affected because of the direct and indirect effects of the pandemic. Moreover, social movements and civil associations with a strong identity and established history that work in slums and the most helpless zones of the country have warned that people from the most vulnerable urban areas are the most affected by the COVID-19 contagion. In relation to this, La Garganta Poderosa, an NGO that has representation in many countries of Latin America, launched last week a social media campaign #contagiásolidaridad (#infectsolidarity) to promote a collective awareness of the situation.

A diffusional space for the urgency

Olla de Mujeres (Saucepan of women) is a group formed by five girls. Only two of them knew each other before. They decided to come together after exchanging some messages through WhatsApp, and they used this channel for organizing themselves. Since April, they have been using this channel to post in their statuses a flyer with the information about the goods they need for preparing meals, along with their WhatsApp numbers. As they are very active and social, they have many WhatsApp groups, in which they share this information. The members of these groups replicate this message, building an informal network of solidarity. They receive messages from unknown people, offering supplies and help. As they have a special permit issued by the authorities and required to drive around during lockdown, they collect donations all around the city. An NGO lends them its kitchen facilities for cooking. Every Saturday, they distribute the meals to a hundred families.

Fernando is 22 years old, has many friends and many groups of friends in WhatsApp. He uses these contacts for food drives. He creates WhatsApp broadcast lists and his parents do the same, helping him to promote his campaign of food donations. Fernando and his lifelong friends cook every Saturday in the kitchen of the club where he plays volleyball. Last Saturday, they distributed more than 200 meals to people who went to a merendero, or food bank for low-income population.

Schools and WhatsApp

School teachers have a fundamental place in this network, diffusions and emergencies. Schools are one of the institutions that have deeply transformed themselves to adapt to the current situation.

Some extra data to understand the situation: the majority of the schools that are settled in popular and deprived areas of the country offer breakfast, lunch and/or afternoon snacks to their students living in vulnerable conditions. However, since on-site classes were suspended, teachers are in charge of delivering every other week a bag of food products, a measure that the national government has introduced to replace school meals and increase social assistance to these families. Along with the food provisions, teachers distribute school booklets for students to continue with their education, in order to guarantee the Pedagogical Continuity Plan. Then, communication continues via WhatsApp. “Far from other schools that can work via Google Classroom, Zoom or other platforms, our unique way of communication with families and students is via WhatsApp. In our community, families do not have neither internet access nor computers. We give them these booklets, and then we try to continue communication using WhatsApp,” says Jéssica, head of a school in the province of Buenos Aires.

However, the content of these booklets has received much criticism: the Mapuche’s Confederation (the NGO that congregates native people settled in the south of the country) reported that they were described as a vanished community, using discriminatory vocabulary, said the report. The National Ministry of Education publicly apologized to the community.

Even though browsing the governmental site educ.ar – where students and/or their parents can download these booklets – is free of charge and contents can be downloaded without consuming mobile data, access is almost impossible for families with many kids and only one mobile phone per household. “Besides, most of these parents haven´t finished their primary studies. Even if they had mobiles or computers, they wouldn’t have the digital skills for accessing to these sites and downloading the pedagogical material”, says Valeria, a social worker who uses WhatsApp to help women of impoverished communities sending them information about State health assistance for them and their kids.

Nevertheless, communication via WhatsApp largely exceeds pedagogical goals. “At the beginning, it was for school purposes, but currently we use it to share useful information that runs in other social media, such as Facebook and Instagram, which families of our school may not have access to”, explains Jéssica. So in this group formed by teachers and families, schools share information about those places where they can go for free food during the weekends (where Fernando and his friends, Olla de Mujeres and many other groups deliver meals every weekend), state assistance payment calendars and dates of food bags delivery. “We are the link between families and government”. For instance, new of a WhatsApp direct line for reporting gender and domestic violence that was launched recently by the government were shared by teachers using these WhatsApp groups.

However, it is not easy. Jéssica explains that the onsite meetings every 15 days – during which they deliver food bags – are also used for collecting data about connectivity and communication devices available to their students, in order to improve their ways of interacting with students and families and adapt practices in which the dynamics of the context is adverse for the community of the school she heads. “Seventy percent of families have prepaid mobile cards. They top-up their phones when they receive State assistance. That lasts around 10 days. Then communication is cut off.”

The pandemic in Argentina has revealed repertoires, dynamics and resistances of a ‘backstage activism’ that has WhatsApp as a main ally: for creating networks, for organizing solidarities, for coming along with kids in their educational continuity, for spreading information that is originated in other online spaces to which families of these vulnerable communities don’t have access, for reporting and asking for help. All of these are micro practices of an activism that has become different, but seemingly not less effective, during COVID-19 times. However, it is important to say that these creative uses are responses that different actors perform for collaborating with humble communities during this emergency, an emergency that has made visible more than ever before different edges of a context where resources are unequally distributed.

 

About the author

Raquel Tarullo. PhD in Social Sciences and Humanities. Lecturer and Researcher at National University of the Northwest of Buenos Aires Province (UNNOBA) and National University of San Antonio de Areco (UNSAdA). Visiting Research Fellow, Sociology Department, Goldsmiths, University of London (2019-2020). Contact: raqueltarullo@gmail.com/@unflordeviaje

 

What does it mean, in everyday life, to experience the first pandemic in a datafied society? This article takes a data perspective to discuss the specificities of the Italian experience of the COVID-19 crisis.

 

by Tiziano Bonini

Forms of datafication of society during the COVID-19 pandemic have varied from country to country. The biggest concerns relating to datafication of citizens were the spread of contact tracing and notification apps and the risks these would bring to citizens’ privacy. Some suggest that people have become passively accustomed to surveillance by private multinational companies (surveillance capitalism, Zuboff 2019) but are reluctant to agree to be monitored by their country’s Ministry of Health.

In Italy, as in many other countries, many controversies have arisen around health tracking apps. In the end, the Italian app – Immuni – was released on June 2 and in 8 days it was downloaded by two million Italian citizens. While this might seem a success story, things are more complicated than that. Experts pointed out that it will need at least 30 million downloads to make the app useful for contact tracing and there are many doubts about the possibility of reaching these numbers, also because many smartphone models do not support it (as for example all iPhone models before 6s).

Debate on the Immuni app has revealed the existence of two opposing fronts: we can refer to them as the techno-solutionists on the one hand, and the techno-apocalyptics on the other. The former believe they can slow down the diffusion of contagion simply by having an app installed on their mobile phones; the latter instead reject any form of surveillance, except that coming from Facebook or Google. Yet, the importance of data during the pandemic did not emerge only during the debate on Immuni – public narrative of the lockdown period was in many ways crossed by the rhetoric of dataism, meant as a blind and unconditional trust in data.

Every evening, at 6.30 p.m., for two months, the head of the Italian Civil Protection went on television to “give numbers” about the pandemic: new healed, new contagions, new hospitalized, new deaths compared to the previous day. Despite the dubious reliability of those data (the dead, it was later discovered, were many more; the contagions were ten times as many, and Italian regions did not provide data in a homogeneous way), this press conference immediately turned into a collective ritual, an appointment not to be missed, like President Roosevelt’s fireside chats on the radio, a real “media event” (Dayan & Katz 1992): the (macabre) Pandemic Ceremony. This national ceremony was flanked, in scattered order, by other media micro-cerimonies on a local or municipal basis: this refers to the live-shows on Facebook, You Tube and Instagram of dozens of Italian mayors, who, inspired by the macabre national ceremony, every night “entertained” their fellow citizens telling about the state of the virus spread in their municipality through use of data. In this case data were employed as objective and neutral facts to convince citizens to stay at home and “flatten the curve”.

But if we stopped here, we would end up seeing only a part of the story, the one in which data were used to build a public narrative passively accepted by citizens. That’s not the case, or at least it wasn’t for everyone. Since the early days of the pandemic and lockdown, organized groups of citizens have confronted available data trying to analyze them together, drawing different conclusions from the official narrative or even producing new data. Many have opened Excel spreadsheets where they could download Civil Protection data (made available as Open Data) to try to interpret them independently.

Many others have created Facebook groups to discuss such data and their meaning. Some turned to their math friend, some dusted off their old statistical knowledge, others simply followed the home made analysis of their Facebook friends. From this point of view, we could say that lockdown represented a period of collective learning about the role of data in society and accelerated the emergence or spread of data activism, data journalism and open science practices.

On the side of data journalism, the local newspaper L’Eco di Bergamo made an important investigative work. By collecting data independently and examining those already available, it showed that the number of deaths in the province of Bergamo, one of the most affected cities in Italy by Covid-19, was almost double the official number.

On the open science and citizen science side, one of the most active groups on the examination, interpretation and sharing of data on the evolution of the pandemic in Italy was the Facebook group Dataninja, a community of journalists, citizens and researchers created in 2012 by a group of Italian journalists interested in the use of data in creating information. This community, which counts more than 3,000 members, for two months produced a large amount of data, “home made” graphs and tables, representing a collective effort to try to make sense of what was happening.

Still on the open science side, within the community of medical doctors other interesting projects related to data have emerged, such as the Giotto Movement in Modena, created by an association of young Italian family doctors with the aim of building together an electronic register (a shared excel sheet) where to collect in one place all those COVID-19 suspect patients that didn’t match the official criteria to be eligible for a COVID-19 test and taken care of by the Public Health and Hygiene Service. This need was felt by several family doctors, who, simultaneously and without consulting each other, created very similar “low technology” tools (Excel or Word sheets) to keep the situation under control. These were the first weeks of emergency and the situation on the ground was very chaotic. The project was developed in three main phases:

1. Consultation among young doctors from various Italian regions (thanks to the network of the Giotto Movement, an association of young doctors) to define a first version of the register,
2. A group of about 20 couples of doctors in training in General Medicine tested the instrument for a week and at the end of this week, after a mutual comparison on strengths and weaknesses, they built the final version of the register,
3. Diffusion of the register to all family doctors, thanks to the collaboration of the Primary Care Managers of Modena, and to colleagues from all over Italy thanks to the network of doctors of the Giotto Movement who contributed to its realization.

On the side of data activism, the NGO Action Aid, since March 12, has activated a national mapping of spontaneous and institutional solidarity initiatives (such as volunteers to do shopping for the elderly in various cities), those of psychological support, fundraising, debunking fake news and dissemination of scientific data. The project is named Covid19Italia Help and consists of an interactive map in which anyone can report and insert solidarity initiatives going on the Italian territory. The creators of the project described it as a civic hacking initiative and the idea (and also a good part of the project) came from the same team that had developed the EarthQuakeCentroItalia project, a very similar civic hacking initiative that consisted of a collective effort of managing the emergence caused by the Eartquake that struck Central Italy in 2016 through the use of open data and citizen generated data.

In Bologna, Kilowatt – a working cooperative made up of different souls working in the fields of social innovation, circular economy, communication and urban regeneration, has launched the project “Passa il tempo, passa la bufera” an experiment in domestic ethnography “at a distance”, to stimulate a ritual of collective self-observation. Kilowatt collected qualitative data through online questionnaires with open-ended questions, renewed once a week for five weeks. Respondents (583 people) provided very detailed accounts of their lives during lockdown, changes in their moods and their new domestic occupations. Data collected were then translated into info-graphics and collective diaries, which gave a collective portrait of the domestic climate during the pandemic. Kilowatt’s aim was to try to keep the pulse of what was happening in our homes and in our lives, accompanying us to a new normality, going beyond the logic of statistics and using the tools of ethnography”.

I talked via email with two of the creators of the project, Anna Romani and Gaspare Caliri. They told me that the answers to the last questionnaire clearly confirmed, at the same time, both the need of others and the need for solitude, as two indivisible and both necessary feelings during the lockdown. They also noticed the fear of the respondents that nothing will change: “we often hear this, but especially in relation not only to macro issues, but also to the individual management of one’s own days, after having discovered the special texture of slow, freed time, time to lose, time for idleness, time for oneself, time for loved ones…”. According to Caliri, “the instrument of domestic ethnography worked as a detector of the so-called warm data, the Bateson Institute would say, i.e. those relational data that give meaning (intelligibility) to a complex system and the possibility of collective learning: those data where the important thing is the connection, not the point”. In other words, domestic ethnography has been employed has a “technology of the self” (Foucault 1988): the activity of taking care of oneself during lockdown went through individual generation and collective analysis of qualitative data (the diaries).

These examples are only the surface of a process of domestication of data within daily life during the pandemic and are significant because they show, at least by some social formations, the ability and willingness to exercise agency with respect to data produced by institutions and narrated by the media. These examples show the need to negotiate, appropriate, decode, rework data coming from above and produce, in some cases, new meanings of data.

The collective process of knowledge production around the virus has been largely based on the capacity of sharing and interpreting data, but what I wanted to show here is that many private and collective initiatives from civil society have taken away, at least in part, the monopoly of production, analysis and verification of data by institutions. Moreover, these examples also provide evidence that not all social formations have adhered to blind faith in data and technology as a solution to the COVID-19 crisis.

 

About the author

Tiziano Bonini is associate professor in Sociology of Media and Culture at the Department of Social, Political and Cognitive Sciences at the University of Siena, Italy. He teaches Sociology of Communication (MA), Mass Media, Digital Culture and Society (BA) and Big Data and Society (BA). His research interests include political economy of the media, platform studies, media production studies, and digital cultures.

At a time when the World Health Organization and other government officials say “do stay at home!”, which home does the LGBTQ+ community has the option to stay in? This article illuminates the struggles lived by the LGBTQ+ community during the COVID-19 crisis, also illustrating some of the initiatives taken in response.

 

By Ricardo H. D. Rohm e José Otávio A. L. Martins 

On May 17th the International Day Against Homophobia, Transphobia, and Biphobia was celebrated, a date aiming to promote international events that raise awareness of LGBTQ+ rights violations worldwide. This date was chosen due to the decision of the World Health Organization (WHO) to remove the term “homosexuality” from the list of mental disorders of the International Classification of Diseases in 1990, disregarding homosexuality as a pathology. Even though the date is now remembered as the day against LGBTQphobia, it is important to remember that the so-called “gender incongruence” was only removed by the WHO from the International Classification of Diseases and Related Health Problems (ICD 11) on June 18, 2018.

This date is a great achievement for the LGBTQ+ community, especially if we consider the context in which the decision took place – the early 1990s, still reverberating the spread of AIDS. For the LGBTQ+ community, notably for those who were born in the 1950s and 1960s and fully experienced the demonization of their bodies during the 1980s, the situation in which we live today, with the COVID-19 pandemic, recalls painful memories.

Still recovering from being considered as the source and proliferator of HIV/AIDS, the “gay cancer”, the LGBTQ+ community seems nowadays once again being held accountable by some authorities and public personalities, without grounds other than homophobia, for the current pandemic, as we can see in examples in the United States,  Israel, and  Iraq. Situations like these portray the constant and hostile prejudice, discrimination, and attack which the LGBTQ+ community suffers, day after day, year after year, century after century. Even if we are not at the heart of the matter, we are blamed for it.

This system of oppression constantly puts our community in a situation of social and emotional vulnerability. The vast majority only lives in the fullness of their sexual orientation and gender identity far away from the utopian coziness which family and home should symbolize. Many LGBTQ+ people, however, are only free when they are among friends, a chosen family, lovers, on a stage performing with a wig on or waving their flags, once a year, at the pride parades. This distance from their family and home could be by choice, when it is unbearable to cope with prejudice, or not – just like when they are rejected, abused, or thrown out of their home. We should ask again, therefore, at a time when the WHO and other government officials say “do stay at home!”, which home does the LGBTQ+ community has the option to stay in?

In Marseille, France, a couple was kicked out of the apartment they rented because they were “the first to be contaminated” by the COVID-19, an affirmation that has no scientific base, just homophobia. Exposed to a peculiar extra vulnerability now, which increases the existing one which the LGBTQ+ population has been facing, our community is even more targeted within the coronavirus crisis, as pointed out by the High Commissioner for Human Rights of the United Nations (UN),  Michelle Bachelet.

The UN draws attention to those who are HIV positive in the LGBTQ+ community. In Brazil, HIV among men who have sex with men is a reality classified as an epidemic and, although they are not part of the risk group, they do have a specific health care routine and ongoing medical treatments which require, for example, going out to withdraw retroviral drugs in health units. The UN also reinforces the importance of the local authorities to ensure the maintenance of these treatments and the continuous supply of HIV medication during the pandemic, not allowing prejudices to affect access and availability of these drugs.

Other health issues raise worries when we are facing the dissemination of a virus which attacks the respiratory system. Some Studies show that the LGBTQ+ population uses tobacco at rates that are 50% higher than the general population. The community still has a significant amount of people with cancer and, consequently, with a fragile immune system. It is important to note that LGBTQ+ people are historically discriminated by both health employees and the health system itself. As a result, many are reluctant to seek medical care, even in urgent situations. That can mean a health risk in times of COVID-19.

Talking about employment issues in Brazil, a national survey conducted by the group #VoteLGBT, with the participation of researchers from two major Brazilian universities, points out that, within the LGBTQ+ community, 21.6% of respondents are unemployed and 20.7% have no income. This survey was conducted through online questionnaires, therefore, there is a considerable possibility that it has not reached some of the most vulnerable people in the community and the results could be worrisome. It is also relevant to highlight the difficulty in the  access to income by trans and transvestite women who are sex workers  (90% of Brazilian trans population uses prostitution as a source of income) who, in times of social distancing, can no longer carry out their activities, losing their source of income (unless able to resort to virtual sessions instead).

Opening a short parenthesis to talk about the trans population, as if the suffering of the most vulnerable portion of the LGBTQ+ community was not enough, transphobia does not cease during a pandemic. Some Latin American countries have determined that, among the measures of social distancing, men and women can only leave their houses on separate days. There have been cases of trans women being fined for leaving their home on the day designated for women, making the pandemic period even more difficult for the trans population, who in addition to fighting the virus, has to still fight to reaffirm who they are.

Addressing the issues associated with staying at home during the pandemic and the difficulty of finding a safe place to be protected, a global survey conducted by the relationships app Hornet, with gay, bisexual, cis or transgender men points out that 1 out of 3 men feels physically and emotionally insecure in their own homes. The reasons are not only due to the intrafamilial prejudice, for those who live with their families, but also the loneliness of those living alone – data from #VoteLGBT`s survey also pointed out that 28% of the Brazilian respondents have been diagnosed with depression, which worsens the scenario presented  by Hornet`s survey.

When talking about LGBTQ+ people who are unable to earn a living or who have been kicked off from their families’ homes, an alternative to survival are the shelters (in Portuguese “Casas de Acolhimento”), present in several cities in Brazil. Although each has its administration, they support each other on joint projects to collect donations and carry out cultural actions. In addition to a shelter, they provide food and personal hygiene products for marginalized LGBTQ+ people, as well as develop academic, capacitation, and cultural activities for their residents and the external public, always relying on donations and sponsorships to maintain their activities. During the pandemic, where everything is more urgent and scarce compared to normal times, the shelters see the decrease of donations while the requests for shelter are increasing.

Initiatives to cope with this scenario

Amid the plight that the LGBTQ+ community faces today, some initiatives deserve not only visibility but also our support. They are the result of the mobilization of the community itself and, eventually, with the support of some LGBTQ-friendly companies and celebrities. Links to the initiative and organizations are copied herein under to bring awareness and visibility to the cause.

Speaking about the shelters mentioned above, some fundraising initiatives have managed to obtain significant support to these institutions in this time of crisis. A virtual live concert with a famous Brazilian DJ organized by NGO Casinha, produced by Tenho Orgulho, FestivalUniverso, and  TODXS, raised more than 5,000 BRL for organizations such as Casa Nem,  LGBT+ Movimento and for Casainha itself. Another virtual live concert titled Festival do Orgulho was organized by Amstel Brewery and payment app AME. The Festival was headlined by artists of great national visibility (among them singer/drag queen Pabllo Vittar) and raised 115,000 BRL that were donated to the NGOs  Casa Florescer, Grupo Pela Vidda and  Projeto Séfora’s,  Família Stronger and Arco Íris de Ribeirão Preto

Another fundraising initiative for shelters across the country – in this case, without musical performances – was the crowdfunding organized by All Out Brazil movement to support these institutions in their maintenance, purchase, and distribution of cleaning and hygiene materials, as well as food. The initiative raised approximately 54,000 BRL and will benefit  CasAmor LGBTQI+  (Aracaju),  Astra Human Rights and LGBT Citizenship | Acódi LGBT  (Aracaju),  Casa Transformar  (Fortaleza), Casa Miga Acolhimento LGBT+  (Manaus),  Casa da Diversidade Niterói  (Niterói),  Transviver  (Recife), CasaNem (Rio de Janeiro), Casa Aurora  (Salvador), Casa dos Direitos da Baixada  (São João de Meriti), Casa Chama  (São Paulo), Casa Florescer 1 (São Paulo) and Casa Florescer 2 (São Paulo).

Another initiative, linked to the arts, was created by #VoteLGBT, the same group which conducted the aforementioned survey. Created during quarantine, LGBTFLIX is a free-access platform, not linked to any streaming service, that compiles more than 200 LGBTQ+ themed short films! The initiative aims to bring entertainment to the LGBTQ+ community during this period of social isolation; on the platform, you can choose short films with homosexual, bisexual or transgender themes.

Some nationwide initiatives are still ongoing and accepting donations. One of them is The Emergency Fund for TRANS people organized by Casa Chama, in São Paulo, which has already raised 83,000 BRL (all information about this initiative is listed in this link).

Those initiatives show a path of light amid so many adversities and also the capacity of the LGBTQ+ community to once again unite efforts to face another major challenge with COVID-19. It is essential to understand the reality of the LGBTQ+ community during this pandemic, to highlight good movements that have already accomplished significant results and call on everyone to support initiatives such as those mentioned herein, not only during the pandemic. With prudence, responsibility, union, and following scientific and WHO`s guidelines the COVID-19 pandemic will be surpassed.

 

About the authors

Dr. Ricardo Rohm is associate professor at the Faculty of Administration of the Federal University of Rio de Janeiro. Founder and coordinator of the Study and Research Program in Human Development, Transformational Leadership Training and Social Governance: pep-rohm.facc.ufrj.br – rohm@facc.ufrj.br

José Otávio Martins is an undergraduate student at the Faculty of Administration of the Federal University of Rio de Janeiro and also an intern in research at the PEP-ROHM Program. zeotavioalm@gmail.com

 

 

 

While the government limits access to information, data activists are consolidating and structuring COVID-19 data for open access.

 

by Peter Füssy

While healthcare workers fight the coronavirus pandemic with drugs and ventilators, journalists and data activists try to tackle the infodemic with numbers and visualizations. In Brazil, it is difficult to tell who is winning those battles as the death toll continues to rise and president Jair Bolsonaro “continues to sow confusion by openly flouting and discouraging the sensible measures of physical distancing and lockdown”, according to an editorial from the journal The Lancet. Mixing a historical lack of capacity and an attempt to control the narrative of the crisis, the federal government provides poor quality numbers about COVID-19, reinforcing the fact that beyond producing knowledge to deal with a problem, data (or the lack of data) “can also shape perceived realities” as Renzi and Langlois claim.

As a result of federal administration decisions, Brazil is one of the countries that test less for the virus in relation to the population and has a peculiar COVID-19 dashboard that shows first the number of recovered cases with larger font sizes, then new cases and deaths with smaller fonts. For one week in June, the total toll of cases and deaths was completely removed from the dashboard to reappear after intense criticism. The Brazilian government also cancelled the daily press conferences and started to release pandemic reports after the most-watched TV news program in the country. All of these decisions are seen by the media and independent organizations as authoritarian, insensitive attempts to make COVID-19 deaths invisible.

Brazil’s Ministry of Health dashboard highlights recovered cases estimation (Source: covid.saude.gov.br)

Beyond that, the Ministry of Health breaks numbers only by states (in Brazil, one state can be as large as France, Spain and Sweden combined), which means that the local dimensions of the problem are mostly ignored. The government had promised information by cities but never delivered and, to make it worse, switched the total report format from an open format (CSV) to a closed one (Microsoft Excel) in the middle of the pandemic. As I discussed previously in this blog post, Bolsonaro’s regime has been limiting access to information since the beginning. The institutional resistance to transparency has only become more evident with the health crisis.

In response to that, during the pandemic, data activism assumed governmental functions providing the numbers to substantiate decisions on a variety of levels, from NGOs (1, 2) to policymakers (1, 2) which use open data from activist group Brasil.IO. Trying to reduce the “data gap” characteristic from countries of the Global South, data activists and other organizations from civil society are collecting and structuring COVID-19 data. Besides Brasil.IO, journalists from six major newspapers and news portals are working together to provide independent total numbers of COVID-19 deaths and confirmed cases, while a data intelligence consultant is crowdfunding another COVID-19 monitor. Initiatives like those work with primary sources, allowing news production and research to be less dependent on problematic federal reports.

In the case of Brazil, more than making people visible and represented through the concept of data justice or advocating for social change, data activism is essential to challenge the state narrative about the pandemic and to prevent more deaths from COVID-19. If it depends on data activism and data journalism, Brazilian democracy will not die in the dark.

Brasil.IO case

One group of volunteers taking over the Brazilian government responsibilities is part of the Brasil.IO initiative. Their COVID-19 project includes data from more than 5.500 municipalities and other sources, such as notaries, making sub notification of cases and deaths visible. The data have been used by major newspapers and news broadcasters, including The New York Times, CNN and BBC. Scientific research is also relying on their data to produce comparative studies and forecasting.

Figures from the project indicate not only underreporting but also the delay in the official balances of COVID-19 deaths. For instance, the Ministry of Health announced that the country had reached a thousand deaths on April 11, while Brasil.IO’s platform pointed to the same number six days earlier. If undercounting promotes the discourse that minimizes the health crisis, data activism can liberate the numbers to public scrutiny.

Social media call and operationalization

Seeing the lack of structured data about COVID-19, founder of the non-profit organization Brasil.IO, Álvaro Justen, tweeted a call for volunteers to help in collecting data manually from all the 27 federative units on March 20. Rapidly, 34 volunteers answered the tweet (most of them are data journalists or software developers). “Fortunately, I have several friends and contacts who work with journalism and data and it was not difficult to find volunteers”, said Justen in an interview via email.

The group spent one whole weekend manually tabulating hundreds of epidemiological bulletins from state health departments since the beginning of the pandemic. Because of the urgency, they started with Google Spreadsheets to consolidate data. After the first round, the spreadsheets with the most recent numbers started to feed directly into the reformulated Brasil.IO platform, which uses Python, Django and PostgreSQL in the backend.

All communication is made with an open-source chat platform (Rocket.Chat), while publicization of updates and new insights appear on Twitter and in a Telegram group. Scripts for automated processes, such as scraping, monitoring, checking data, generating internal reports, and consolidating data are available at GitHub. For example, the group uses a robot to send notifications to the chat when one State Health Secretariat updates COVID-19 numbers.

Improving data quality

Due to the issues with data quality, a considerable part of the data collection is made manually by the volunteers. Besides collecting and checking data, volunteers also carry out the task of contacting health secretariats to recommend good data practices and ask them to make changes, so the data is more accessible via automated processes. “Not all respond satisfactorily but most of them are willing to collaborate in some way. With time and pressure, some things are improving but not in speed that a pandemic requires”, Justen points out.

In order to create an open data culture in Brazil, Justen has worked in databases and improved tools to facilitate data extracting from inaccessible formats since 2013. One emblematic example is a dataset that includes more than 500 thousand companies, and its shareholders, registered at the Brazilian Internal Revenue Service (Receita Federal). After the 2011’s Freedom of Information (FOI) act, that information should be publicly available and accessible to be read by robots. However, the page hosting the data used captchas to limit access. After several requests via FOI in 2018, the demand was denied with a link to a system that sold the data for R$ 506,000. Justen and other data activists pressured the IRS, which finally sent the dataset in a USB drive.

As everything is done on a voluntary basis and the data are available free of charge for everyone, one of the challenges of the project is about financial funding. “We don’t have that much time to work on the project and, therefore not everything advances at the speed we would like”, tells Justen. To help with this issue, they started a crowdfunding campaign to hire developers, making it possible to add new datasets that can be useful to “flatten the curve” of coronavirus in Brazil.

Brasil.IO’s manifesto defines the process of collecting, converting, cleaning and making data available in a structured and open format as ‘data liberation’. As stated in the manifesto, “liberating” access to public data is to make democracy less elitist. However, in the exceptional circumstances of the COVID-19 response in Brazil, liberating data seems to be fundamental to keep democracy and save lives.