89. THE EPISTEMIC INJUSTICE OF COVID 19 - Checking For Symptoms In The Dark

Miranda Fricker wrote of what she called “epistemic injustice” - “a wrong done to someone specifically in their capacity as a knower”. She identified two forms of such injustice: “testimonial injustice”, the injustice of denying credibility to someone’s word, and “hermeneutical injustice”, the injustice of disadvantaging someone in their access to interpretive resources and forming an obstacle to their capacity to know. This week a member of Sage, the UK government’s Scientific Advisory Group for Emergencies, urged the UK to expand its official list of Covid symptoms so that UK citizens could better identify if they have the virus. In this article I intend to show that by ignoring this advice, and keeping the official list of symptoms restricted to a high fever, a new continuous cough, or a loss of sense of smell or taste, the UK government is permitting a continuing epistemic injustice to occur which is causing unnecessary and highly preventable suffering.

Diagnosing illness is already fraught with epistemic injustice because it is a perfect storm of intersecting areas of testimonial and hermeneutical prejudice. There are known testimonial problems within the medical profession, seen in historic inequalities of care for women and people of colour whose reporting of symptoms have been too readily dismissed. Children, too, have struggled to have their voices heard - or to even articulate - the specifics of their symptoms when reporting to a doctor about how they feel. Writing in The Lancet a few years ago, Have Carel and Gita Györffy illustrate the intersection of testimonial injustice with the hermeneutical when they describe a five year old girl unable to explain the blurred-vision she was experiencing. The girl received a CT scan for “double vision” (which could be the symptom of a neurological problem) instead of merely a prescription for the glasses she actually needed to correct her vision because she simply did not have the “epistemic resources to describe her symptoms accurately”. Here, happily, the consequence of the injustice was fairly mild - a little time wasted and a discomforting CT scan before a fairly painless resolution at the opticians. But more serious examples follow: “abdominal pain is a common presenting symptom in children”, the article goes on. “It is also common for young children suffering sexual abuse to present with “tummy ache” because they might be fearful or ashamed of disclosing or because they do not know what is really wrong or what to describe. Children of a certain age will always lack the concept of sexually motivated actions.“

Children are believed not to have adequate language to give reliable testimony of their symptoms, but also often don’t have the hermeneutical frameworks with which to fully understand what is happening to their own bodies or the significance of certain physical symptoms. Take, for example, an anecdote from my wife of a childhood acquaintance, blind in one eye since birth, who didn’t realise such a thing was a problem until she was old enough to talk. Her mother accidentally got shampoo in her eye while washing her hair one day. “It’s ok mummy,” the girl replied, wiping the shampoo away, “I can’t see out of that one anyway.”

The history of women being dismissed as “hysterical”, people of colour as being “difficult” or other people’s medical testimony degraded to mere “hypochondria” tell similar stories of epistemic injustice in healthcare. Toxic masculinity has also famously seen men ignore their own testimonies of physical weakness and avoid the doctor out of misguided bravado. Furthermore, we are all aware of the adage not to Google our symptoms because “on the internet, everything is cancer”. Seldom, however, do we consider the hermeneutical injustice of this:

1) if the assumption is that non-doctors cannot discern cancer from other possibilities despite intimate knowledge of their own symptoms then it is believed by medical professionals that we do not have the capacity to know our own health without the interpretation of a medical professional, creating an assumed barrier to self-knowledge which might seemingly legitimise later testimonial injustices because “the doctor always knows better”;

2) if we can’t even Google our symptoms then we can’t even hope to learn how to develop a better understanding, thus obstructing even our potential to be future knowers of our own health.

Remember also, sometimes it is cancer. And sometimes professional doctors get it wrong. They are, after all, only ever making best guess abductive inferences to the best explanation which, while reasonable, are never guaranteed.

None of the above is intended to deny that healthcare professionals, most of the time, (as with all experts in particular fields) won’t likely have more knowledge than non-experts would and, in most cases, that we should defer to their expert opinion. But it is to recognise that blind deference is different to informed deference, and that the more all of us know the better the outcomes are likely to be in terms of knowledge. If I know as much as possible about my symptoms and their potential salience then I will be better able to describe this private, personal knowledge to the professional medical expert who can then use their higher degree of understanding to help us navigate towards the most likely causes and cures. If either side of that epistemic equation is off - if I reject the testimony of my doctor, or impede their hermeneutical toolkit, or if they reject or impede mine - then we are less likely to arrive at knowledge together in this necessarily collaborative epistemic project.

Currently, working in a school, we are seeing a lot of Covid 19.

In the last two weeks, three whole year group bubbles have been sent home and many more individuals are self-isolating.

Colleagues who have children at other schools are experiencing similar issues, with their own children, or themselves, having to self-isolate after coming into contact with a positive case at a school. As the positive cases rack up, I am also minded of the number of students and staff in the preceding weeks dismissing clear symptoms of something as “just hay fever” or “feeling a bit run down”. Or even the known symptoms of covid being dismissed because “it can’t be covid as I did a lateral flow test yesterday and it was negative”. Yet clearly, as the cases mount, some of us have covid 19 and, unaware of it, are bringing the virus into communities. Not merely the school community. We go home and take it to all the other places our families may go once school is out too. It got me thinking - perhaps our inability to keep a lid on covid 19 in the UK comes from the hermeneutical injustice of many of us not knowing the full range of symptoms which could be a manifestation of the virus and therefore not recognising when we might, in fact, be infectious?

The CDC in America list eleven potential symptoms of covid 19. The WHO list 13. The European Centre for Disease Prevention and Control list a range of possible symptoms beyond the UK’s high temperature, continuous new cough and loss or change in taste and smell. Headaches, weakness or tiredness, muscle aches, runny noses and sore throats are all included in these other lists. All of these are symptoms I have heard my students complaining about over the last few weeks at school and yet once again the medical intersection of testimonial and hermeneutical injustice occurs: a child tells their parent “I have a headache” and, because the parent does not have the hermeneutics to properly assess the risk that such a symptom might be covid 19 their bias against the testimony of a child (they’re probably just trying to get out of a test at school) makes it far more likely that the headache is dismissed as anything important and the child is sent to school regardless. “You’ll be fine”, they are probably told, as many of our students are told at school when they visit the medical room and are greeted primarily with an assessment of whether they are lying to get sent home rather than with any assumption of credibility.

When I had covid 19 last December, my fever started on the Sunday, but the Friday before that - when I was still in school - I had a headache and tiredness I dismissed as the effects of a long and stressful few weeks. The headache was worse on the Saturday and I dozed on and off on the sofa - recovering from a tough term I believed. My throat was sore but I’d been teaching through a mask for weeks - my voice strained from the effort. It’s probably nothing, and no one told me that it could be. The fever prompted me to get the PCR test, but throughout my entire experience of covid I only coughed once, and when my taste and smell went it was days into the illness. Meanwhile my wife started coughing the day we got our tests, but hers came up negative. It was only a few days later when she got a second test that the result was positive.

This tells us something further - just as certain people are given obstacles to knowledge through lowering the credibility of their testimony, we can sometimes have obstacles to our knowledge by placing too much credibility in the wrong things or not having the understanding to properly interpret what they are saying. The government are currently considering dropping the requirement for year group bubbles in schools to have to self-isolate following a positive test result and replacing it with daily lateral flow testing instead. But we already know that lateral flow tests are imperfect and unreliable. We have seen positive test results which then come back negative when given a proper PCR test, and, more worryingly, positive results from PCR tests that weren’t picked up on a lateral flow. But we can also see from my wife’s example that sometimes even a negative PCR test result can be false security. There is nuance even in the most robust of data.

This week a student returned to school after a negative PCR test. They were in school for two days but then came down with covid symptoms. As we await the results of a second PCR test I wonder about the student’s classmates who, if the test is positive, may have been infected and bought the virus home to their families. I think specifically of the student in that class whose mother - they proudly told me - was attending Centre Court at Wimbledon last week. We already know about the thousands of positive cases caused by attendance at matches at Wembley for Euro 2020 and it is too early as yet to know what unwanted extras Wimbledon gave its audience alongside the strawberries and cream, but the possibility that a lack of proper understanding of known covid symptoms and over-reliance on the testimony of flawed tests may well have contributed to any uptick in cases as a result of the tennis is very real. I am sure the parent I know was in attendance was not only parent of school-age children watching live at Wimbledon that day, or any of the days of the multi-week tournament. Children, it is said, do not suffer the effects of covid 19 as badly as adults do. But children continue to spread the virus to adults who may not yet be vaccinated and who, unaware of the full range of possible symptoms covid 19 might present, might then go to work, or to the tennis, and spread the infection further.

If citizens - children and adult alike - do not have accurate information about the full range of potential symptoms of covid 19 then a hermeneutical injustice occurs making them incapable of knowing whether they might have the virus or not or of making sensible choices that affect the safety of others. It leads to the over-reliance on the testimony of unreliable rapid testing designed to green-light economic productivity rather than meaningfully inform. It means not fully being able to interpret and risk assess the results of more reliable PCR testing in the context of known progression and manifestation of an ever-evolving infection. It means that even the most conscientious among us are trying to track and trace this virus effectively in the dark.

It is also worth noting that one of the things which has made covid 19 so devastating is the lack of knowledge even experts have about its full potential for bio-carnage. Long covid, fungal infections, neurological havoc - this is no simple respiratory disease and its assault across the body seems to be leaving a range of confusing and life-altering consequences. It’s been seven months since I got sick with it and I still have distortions in my sense of smell. Risk-assessment based on known risks is a tricky business at the best of times, but risk assessment with so many unknown variables logically urges one to heed the precautionary principle not merely hope for the best. Infection appears to be a crapshoot, with some experiencing only mild discomfort and others severe damage. Arguably we can choose to gamble the risk to ourselves, but every time we act in a way which can potentially infect strangers we choose to gamble with them too. The morality of such gambles requires more of us than ignorance. Denying populations sufficient epistemic resources to make those gambles on the best available information is a significant epistemic injustice.

Throughout this pandemic we have been denied the hermeneutics to understand the risk we pose to others in a variety of ways. The redacted list of symptoms is just one of them. By not discussing openly the way the virus is transmitted and simply repeating inaccurate slogans like “hands, face, space”, the significant role of ventilation has not been properly understood by the UK public, for instance. When we were told to “eat out to help out” last summer, months before there was a vaccination, the people who did so were largely ignorant of the dangers of indoor dining with a contagious and potentially deadly airborne virus about. But it was an ignorance intentionally nurtured so that businesses could re-open at profitable capacity. The scheme was massively responsible for the UK’s “second wave” of infections - yet those who had stayed home because they understood the dangers were unlikely to be its victims. The government’s promotion of the scheme was not merely reckless, therefore, it was epistemically unjust as it put in danger only those without the hermeneutics to analyse the risk and replaced legitimate knowledge of those risks with the appearance of knowledge that such eating out would be perfectly safe. Current plans for 60,000 fans to attend the semi-finals and final of Euro 2020 suggest the government’s facilitation of such injustices in the name of reigniting the economy continues. It is not that fans shouldn’t attend, but, as Stephen Reicher from the Sage subcommittee has pointed out, seeing such scenes on TV without any mention of the risks associated sends a message to the whole country that “the danger has gone away”. Such a message - while a boon to the re-opening hospitality and entertainment industries - is false, and forms a clear barrier to legitimate knowledge that allows us to make safe choices. It is a message which perpetuates epistemic injustice.

Ultimately, without a medical degree, we need as much help as possible to demystify and understand what any medical condition we experience is. With this particular virus, we need further help to fully grasp the risks it poses to ourselves and to others, and to identify what symptoms we should and shouldn’t worry about. Covid 19 has already exposed a wide range of structural inequalities in society, from the casual initial othering of “elderly and vulnerable” people as expendable collateral damage in the quest for “herd immunity” for those more young and able, to the disproportionate number of BAME and working class people dead from the virus compared to their wealthier, and whiter, fellow citizens. Anything which prevents understanding in some groups (be it the general population or other, limited and specific subgroups within that population - i.e. teachers, students, tennis fans, football fans, indoor diners, key workers, etc.) while that same understanding is widely available to others (doctors, nurses, populations of other countries, politicians, journalists, scientists, etc.) and puts those groups without the “collective interpretive resources” of understanding in the position of putting themselves, or others, at preventable yet unknown risk must be seen as an injustice too.

Author: DaN McKee

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