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  • Writer's pictureNatalie Alana Ashton

Coronavirus, Online Communities, and Social Change

There's a tempting, optimistic view of social media which says that it can be a tool for positive social change. It connects people, allows information to flow quickly, and offers a platform to those who wouldn’t otherwise have one. All of this helps to raise awareness and increase understanding of important, overlooked issues and - the thought goes - this is an important first step to resolving them. A much lauded recent example is the #MeToo campaign, which raised awareness of the prevalence of sexual abuse and harassment, and started international conversations resulting in a number of high profile resignations, firings and criminal prosecutions, as well as the passing of a sexual harassment bill in US Congress.

There’s a view within feminist epistemology that supports this idea. Feminist standpoint theory says that people from different social groups have different epistemic ‘standpoints’, and that the standpoints of those who are marginalised or oppressed often have an ‘epistemic advantage’ over the standpoints of those who aren’t. This is because their oppression gives them access to evidence that others don’t typically have (e.g. the prevalence of harassment and violence towards people like them) and often prompts them to critically reflect (e.g. on the causes of such violence, and the way it’s viewed socially) with others. This can lead to greater understanding and knowledge than their oppressors have - at least about certain, important areas of the social world, particularly their own.

Of course oppressed people are unlikely to have the resources to share this enhanced knowledge through traditional forms of media. It’s hard to get column inches or airtime without money, prestigious qualifications, or the right connections - especially if what you want to say challenges the status quo. And so there’s hope that social media - and the potential to go viral, or establish a significant long-term following, with little more than access to a mobile phone - could be the key to widespread improved understanding of social issues and how to respond to them.

However, securing social change isn’t as simple as merely handing the microphone to marginalised people. In this post I’m going to discuss two online communities that have been established in response to the Covid-19 pandemic, and use them to highlight an oft-overlooked component of epistemic advantage and social change: collaborative critical reflection. I’ll then point to three important lessons for social media optimists, those who work in traditional media, and new activists.

[S]ecuring social change isn’t as simple as merely handing the microphone to marginalised people.

I caught Covid in early March 2020, before the UK had even really contemplated its first lockdown. After a relatively mild illness and a brief recovery period I developed new and concerning symptoms, including frequent, sustained tachycardia and severe shortness of breath. Doctors couldn’t figure out the cause or offer much advice (I was eventually sent this NHS resource by a private physiotherapist, which might be helpful for others in the same situation). But friends and relatives started to show me articles about people suffering with long-term symptoms after having Covid-19. It turned out I was far from alone, and eventually I joined Long Covid Support, a Facebook group which currently has over 34,000 members.

Online groups like this one are commendable for many reasons. For one thing, they can be established quickly by the people who need them. In a time before social media a support group for a new or uncommon illness would be dependent on connections between care providers in different geographical areas, or might reach just a few people through local community notice boards. But now a combination of keyword searches, hashtags, and other online infrastructure allows substantial, global networks to be created almost overnight. Another benefit of online groups is that many people find them more accessible, as they can be accessed when- and wherever is convenient, and conversations can occur asynchronously. As a result, online groups can be very impactful. As well as sharing practical advice on symptom management, thousands of people have found comfort and reassurance in the Long Covid Support group, at a personally and politically frightening time when many people feel (and are) very isolated.

But groups like this can have shortfalls, too. My sense from browsing the Long Covid Support group is that they don’t have a clear set of shared goals, or a plan to achieve them. There’s frequent discussion within the group of ‘getting the word out’, and a common theme when members are interviewed for broadcast or print news is wanting ‘greater recognition’. But beyond these understandable, but vague, desires it’s not clear what they think would improve their situation. Do they want funding to be allocated for particular kinds of Long Covid research? Specific medical interventions for sufferers? For Long Covid to be recognised as a disability for benefit and anti-discrimination purposes? The epistemic advantage thesis predicts that marginalised people will have a better knowledge and understanding of how to improve their situation, but for all its merits, this doesn’t seem to be the case for members of Long Covid Support. So what’s going on here - is standpoint theory wrong?

I don’t think so. I said above that standpoint theorists attribute epistemic advantage to a combination of two things: access to evidence that others lack, and being prompted to collaboratively critically reflect. The first often comes relatively easily: most women can tell you how often someone on the street makes sexual remarks about them, for example. But collaborative critical reflection is a difficult, lengthy process that typically involves discussing shared experiences (like street harassment), realising that they’re caused by systematic external processes rather than individual circumstances or behaviours, and then questioning - and eventually working to resist or disrupt - the structures which maintain those processes. Standpoint theorists know this, and so caution against thinking of epistemic advantage as automatic. It’s not something you have (or lack) simply because of group membership; epistemic advantage is something a group has to develop.

Long Covid Support have the evidence required for epistemic advantage, but they haven’t developed one yet because they haven’t had the time, or perhaps the need, to undertake collaborative critical reflection.

Members of Long Covid Support have access to evidence that most people don’t - they’ve personally experienced the range of symptoms associated with Long Covid and the typical responses from medical professionals, and by connecting with one another they’ve learned how many other people are in a similar situation. But it doesn’t seem like they’ve undertaken significant collaborative critical reflection yet. This is completely understandable - a group of people who became chronically ill (mostly) for the first time just a few months ago simply haven’t had time to develop the second component of epistemic advantage.

Building a community is an essential first step though, and given more time it’s possible Long Covid Support will foster greater collaborative critical reflection, enable its members to develop an epistemic advantage, and become an effective movement for social change. But there’s a remaining reason to think they may not. Whilst those with Long Covid have undoubtedly suffered, and it seems fitting to describe them as marginalised in some sense (their experiences are not broadly understood, and are often downplayed or dismissed by medical professionals), they may - let’s hope - avoid sustained systematic oppression. The Long Covid sufferers featured in traditional media seem to be lucky enough to have a safety net - sick pay, savings, or understanding bosses - which have shielded them (as they have me) from the usual financial consequences of struggling to work. If the community is mostly composed of - or continues to be fronted by - people who don’t experience structural oppression as a result of their illness, then they may not feel the need to critically reflect on their experiences together. And if so, they may not develop an epistemic advantage.

To make what I’ve said about Long Covid Support more vivid, let’s compare it to another online group established last year. MadCovid is an organisation run by and for people who experience mental illness or distress, as well as those who are neurodiverse, and whose existing problems have been exacerbated by Covid and the effects of lockdown. The founders are members of disabled and mental health communities who have years of experience with activism and organising both on and offline. In addition to having privileged access to evidence about what it’s like to live with mental illness or distress in the UK, members of this community have also had the time, and the need, to undertake (ongoing) collaborative critical reflection. As a result they have a much clearer idea of the problems the pandemic throws up for members of their communities - the group was actually formed before the first UK lockdown, in anticipation of the problems that they (correctly) expected to arise - and have been able to set up a variety of projects to ameliorate these.

One project, the MadCovid Fund, has raised almost £30,000 (and counting) for mentally ill and neurodiverse people facing financial hardship due to Covid-19. The money is being distributed in the form of small grants to individuals who need help with things like increased fuel bills, and fridges and freezers for those who previously relied on day centres for some of their meals. Mental illness and neurodivergence made it difficult for some people to leave the house regularly even before it was widely understood to be risky, so another project - #GetTheFckOutside - provides much needed encouragement and solidarity by inviting people to share when they spend time outdoors.

The MadCovid community does appear to have developed an epistemic advantage. They, and other well-established groups of disabled and otherwise-marginalised people, know precisely what problems members of their communities commonly face, and what measures could make a direct impact. This is because, unlike Long Covid Support, they and many similarly-marginalised people who came before them have undertaken decades of collaborative critical reflection in response to systematic oppression. They have had the time and the necessity to develop a thorough and intricate understanding of their shared situation, and as a result have been able to use the speed and accessibility of online infrastructure to make substantive material differences to the lives of those they seek to support.

MadCovid have developed an epistemic advantage, but their attempts to instigate social change might be limited because they haven’t had the traditional media exposure that Long Covid Support have enjoyed.

MadCovid have also made steps towards the more ambitious social change that social media optimists might hope for, by developing a set of specific, detailed recommendations for mental health services during the pandemic. These are much more substantial and sophisticated than Long Covid Support’s general calls for ‘recognition’, but - as far as I’m aware - MadCovid haven’t been national news, and it’s unclear whether these recommendations will be taken up without wider social pressure.

To sum up what I’ve said so far: Long Covid Support have the evidence required for epistemic advantage, but they haven’t developed one yet because they haven’t had the time, or perhaps the need, to undertake collaborative critical reflection. MadCovid have developed an epistemic advantage, but their attempts to instigate social change might be limited because they haven’t had the traditional media exposure that Long Covid Support have enjoyed.

This suggests that traditional media still has a vital role to play in instigating social change in the UK - social media alone isn’t enough. But as things stand, this potential isn’t being fully realised. One reason might be a lot of people working in traditional media simply don’t want to change the status quo - as with the most prominent voices in Long Covid Support, those who have the most say (with regard to things like editorial decisions) are often socially privileged, and so are so less likely to feel the need to question oppressive structures. Or they may even have (conscious or unconscious) disincentives for doing so - it’s both psychologically and practically difficult to question structures which you benefit from. But two of the central purposes of traditional media are to represent public interest, and to hold power to account, and so - at least in theory - even privileged people who work in traditional media should have an interest in raising the concerns of the marginalised.

What lessons can we take away from this standpoint theory-informed analysis of online communities? A first lesson is for the social media optimists and those who have a role in designing or shaping social media platforms. Private groups - or, better, temporary and flexible areas of epistemic respite - are important for communities to be formed, to speak candidly to one another, and to begin (or continue) processes of collaborative critical reflection. This is something that a lot of people want and need, so it makes sense to design and shape platforms with this general goal in mind.

Social change is a long, slow, difficult process, and solidarity with well-established activists is essential.

A second lesson is for those who work in traditional - print and broadcast - news media. Whilst newly-marginalised groups (and newly-formed groups of already-marginalised people) should be expected to be good sources of information on their own experiences, they may not have complex analyses of their situation right away. Giving them too large a platform too early can amplify vague, underdeveloped ideas, and (as I’ll explain below) be harmful to them, their movement, and to other groups. Often the assumption is that academics or medical professionals can supply relevant analysis, but when their theorising fails to account for the experience of marginalised people it also misses a crucial part of the story. A reliable option for thorough analysis grounded in relevant experience is well-established communities and seasoned activists. Those who work in traditional media could benefit from forming stronger connections with members of these groups, as well as learning to distinguish academics whose work is informed by sensitive understanding of marginalised experiences from those whose work is merely about marginalised people.

Finally, there’s a valuable lesson for those who are newly-marginalised, or otherwise new to organising and activism. Social change is a long, slow, difficult process, and solidarity with well-established activists is essential. If Long Covid Support attempt to pave their own way without learning from existing groups, there’s a risk they’ll lose their (presumably time-limited) spotlight before securing lasting change. Or, worse, they could actively harm themselves and others; they might prompt damaging, knee-jerk policy changes, for example, and they already communicate in ways that undermine disability activism (they frequently highlight how many people with Long Covid were extremely fit and active before catching Covid, which implicitly reinforces the idea that a person’s worth is tied to their health and capacity for strenuous work).

But Long Covid Support could learn valuable organising and communication strategies by collaborating with established groups - as well as tips for energy and pain management, accessing services, and patient advocacy from those with similar conditions like Chronic Fatigue Syndrome/ME, PoTS, and Dysautonomia. In return, these established groups could benefit from sharing in Long Covid Support’s media exposure. And, beyond just sharing resources, by working together to draw attention to the structural issues that affect all of them they would have a much better chance to achieve meaningful, lasting, social change of the kind that social media optimists hope for.

Disclaimer: Any views or opinions expressed on The Public Ethics Blog are solely those of the post author(s) and not The Stockholm Centre for the Ethics of War and Peace, Stockholm University, the Wallenberg Foundation, or the staff of those organisations.


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