At the start of 2020, the urgent need to contain COVID-19 meant that alongside direct medical and clinical strategies, most countries tried to restrict the majority of the population’s movements in some way. 

Simultaneously, and perhaps even because of the reduction in face-to-face interactions, there was also a push to rapidly increase the digitalisation of most aspects in life. From home-schooling via video-conferencing platforms to contact tracing apps, most countries’ economic, educational, social, societal, cultural and physical wellbeing and survival seemed to place a heavy emphasis on the need for digital tools as an effective response to the global crisis, with some sectors even thriving because of this. 

As an immediate measure to save and protect human lives, digital tools seem like a viable and necessary solution. But what are the implications of these digital tools and responses on human rights? How are they subject to misuse? Can there be a viable balance between protecting human lives and rights?

For example, there is a fine line between data collection as a mode of monitoring the coronavirus, and data collection as a mode of surveillance on citizens, or the selling of this data for commercial purposes. Take contact tracing technologies which use smartphone features such as GPS. Such tools are promoted as part of an important collective and social responsibility towards fighting COVID-19, yet these often infringe upon privacy and human rights as a mode of surveillance. As many countries slowly attempt to come out of the pandemic, ‘vaccine passports’ are another pandemic digital tool implemented in some places, which raise similar concerns relating to the infringement of privacy and potential discrimination.

Furthermore, such technologies developed as part of the digital response to containing COVID-19 can be weaponised in ways that are often gendered, sexualised, racialised, classed and ableist by (mis)using data for classification, targeting and profiling. As such, whilst trackers have been used for policing, commercial and state surveillance long before the pandemic, when blurred with the need for clinical data collection and tracking to save lives, the darker side of such digital tools becomes obscured. As some of these digital tools developed during the pandemic will no doubt be retained beyond the immediate coronavirus crisis, what are the implications upon human rights as we globally begin to emerge from the pandemic? 

Shining a Light on Inequality: Pandemic Media and Technologies

The urgency of COVID-19 may have indeed provided a convenient cloak to hide the potential misuse of digital tools in the name of reducing risk, safety and containment. But the other side of this shadow is how the pandemic has shone a critical and much needed light upon existing inequalities, injustices and disparities between different demographic groups.

The need to digitalise life opened up new and more accessible spaces, like previously unavailable online events, courses and opportunities, and practices, such as more flexible work patterns, new or stronger forms of communication. One way of looking at this is how the pandemic-induced digital drive improved issues relating to accessibility, diversity and inclusion for many; but another way of looking at this is, why did it take a pandemic to implement these changes? Why did it take the pandemic to make more obvious what should have been obvious from the start?

Similarly, whether these are questions relating to class and poverty (can everyone afford the digital, the technological? can everyone afford and/or easily access healthcare?) or the so-called ‘digital divide’, as with most issues, those who are marginalised and vulnerable have been affected the most: it is no coincidence that COVID-19 hit ethnic minority communities disproportionately. 

Sadly and paradoxically, inasmuch as highlighting existing inequalities, reports and media coverage about these issues have also helped to worsen the situation by fuelling social discrimination based mostly on gender, race, sexuality and class. Notably, running parallel with #BLM movement, 2020 marks a significant moment when Sinophobic violence and hatred towards East and South East Asians emerged visibly and globally in a way previously not witnessed by the general public. This is not to say that Sinophobia did not exist before COVID-19, but the impact of COVID-19 – including the media coverage of it – simultaneously made more obvious what should have been clear from the start, whilst also contributed to the racialisation of COVID-19: as British MP Sarah Owen stated, “COVID is being given a face, and it’s the face of an East Asian person wearing a mask”.

As COVID-19 has been racialised, classed and gendered, a similar trend emerged with Long COVID. The condition has been significantly gendered, often tied to women, with stock images of women clutching duvets or recovering on hospital beds being common across most media reports and health communications. 

As the world collectively seeks to recover from COVID-19, the next follow-up crisis will no doubt be Long COVID. But if we look at the situation of Long COVID right now, the same groups and inequalities as those experienced and exposed during the initial pandemic remain: poor access to healthcare, discrimination, misinformation and the widening of gendered, racialised, classed, ableist and heteronormative disparities. The question we need to urgently ask is: what did we learn from the pandemic? How can we move forwards from COVID-19 towards more equal, fair and just societies? 

Inequalities Have Always Been There

Whilst we need to acknowledge that many digital, political, economic and clinical responses to the urgent global crisis needed to be swift – in some cases, with very little time to consider all consequences in much depth – we must not lose sight of the issues relating to inequality and human rights that have always been there. It is our collective responsibility – from policy-makers, scientists, journalists, activists, scholars to media and technology practitioners – to use this moment in time to reflect how we can change our policies, practices and socio-cultural understanding in ways that move towards that fairer society. Representation should be at the start and heart of all such thinking: we must consider how to represent ideas and information; and also how representation shapes perception of these ideas and information. 

Representation affects all areas in life. For example, why is there so little data collection on ethnic minority communities during and continuing the pandemic? If such inequalities are already set in place even at the data collection stage, then ensuing research and practice – from statistics informing clinical solutions to support and care – are similarly going to be skewed, not necessarily representative or appropriate for the whole population. There needs to be a fundamental cultural, technological and methodological change in the way data is collected, monitored and analysed. After all, these types of data inform policy and governmental decisions that impact society across all areas of life. 

Similarly, whilst social media has been at the forefront of digital and hashtag activism and advocacy during the pandemic, including #StopAsianHate to #LongCovidIsReal, not to mention being a life-saving resource for many suffering from Long COVID, we must also be aware that social media in itself has a skewed demographic. 

Does everyone have access, digital literacy and/or the willingness to be on social media? Such questions impact representation and thus public perception; whether Long COVID patients are recruited via social media (hence only a certain portion of the population generating data), or only certain groups of society having access to support and resources (which in itself might be a source of misinformation). We must all think beyond social media as a means of communication, and always consider how else can we reach communities beyond Twitter, Facebook, Instagram, Youtube or TikTok.

The Role Of The Media

Finally, media representation is a key area in shaping public understandings of COVID-19 and Long COVID: media plays a huge role in how such topics are gendered, classed, racialised and otherwise understood through often unfair and biased ways. For example, whilst stock images provide a relatively cost-effective and easy way around copy-right issues, they can become lazy shortcuts that do more harm than good. When using a standard stock image of a woman holding a duvet looking ill or mask-wearing East Asians to represent a COVID-19 story, journalists should always question: how am I contributing to stereotypification? What are the other ideas being represented here beyond the core news story? How can I change my search terms and/or tag images differently?

The role of news media was paramount in making Long COVID visible to the public. Special news reports of individuals suffering from Long COVID provided a relatable story to many who had otherwise been experiencing gas-lighting from their doctors, who either refused to acknowledge the existence of Long COVID or had little awareness of it. Yet, we must also question whose stories have not been heard: how and where are interviewees being sought? Are only those with the appropriate digital/medical literacy and resources being interviewed and thus represented? How does this potentially contribute to public perception of Long COVID?

As most of the world tries to revert ‘back to normal’, it is at this precise transitional time that questions of representation become ever more critical. Now is the chance to question what temporary processes, practices, policies and systems placed during the pandemic may have reduced or exacerbated bias, inequality and injustice. Now is the time to change, to really reflect on what needs permanent ‘reverting back’ or ‘keeping’ in order to create a more fair, equal and just post-pandemic world.