As an evidence reviewer, I suspect that my work commits epistemic injustice in that it privileges the information needs of doctors and other professional classes, bringing together information that is narrowly scientifically valid. Thus it reinforces the divide between the lived experience of illness and misfortune, and the scientific codes that make up acceptable evidence.
I was recently at a meeting that was discussing a review of evidence into informal social support for domestic abuse survivors. There was a mixture of participants: service providers, policy influencers, researchers and domestic abuse survivors. Participants were keen to develop an understanding of the effectiveness of informal interventions in this field by examining the available evidence.
However, the stories told by the survivors would never make it into a formal academic journal study – too anecdotal to be considered objective and therefore ‘truthful’. But these stories of kindness were what these women cared about. The kindnesses of others were important to them. The term ‘Informal social support’ seems to suggest that these kindnesses would be more important to examine than outcomes and demographics – is this review an attempt to formalise kindness?
The survivors set great store by reports and evaluations that hadn’t made it into an academic journal. But these are often written to please funders and lobby policy makers, so are always biased as they are working to persuade. But scientific journal articles are doing the same thing, interesting authors are making an argument for their conclusions. The problem with reviews is that they claim to be unbiased and this is misleading, therefore an injustice.
Evaluations and lobbying reports usually do not discuss the failure of interventions – an important source of knowledge – whilst occasionally research articles will which makes them particularly valuable. For example, I was looking through some research articles on this topic and one suggested that ‘shame’ prevented survivors from seeking out support, informal or otherwise.
How to bring together the idiosyncracies of personal experience and the more formal research literature? I find both useful. Orthodox reviewing does not do it because in order to appear unbiased it takes out the contextual information and makes everything seem the same. Reviews appear to me to be very flat, neutral and thus fairly uninformative. Novels may say more – think about the commentary on women, marriage, poverty and social hierarchy in Austen’s novels. Reviews are written as if in a vacuum, that society and personal relationships do not exist.
Carel claims that phenomenology has the answer in its detailed approach to considering the individual’s experience of illness with the aim of identifying underlying common realities. Much in the same way, a critical realist would approach the problem. These strategies may help in understanding experience to alter communication between those groups with professional concerns and informal supporters, anxious to help but unsure how.
It occurs to me that the domestic abuse survivors and those with chronic illness have some things in common – loss and shame come to mind.
Walking whilst ill 