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February 26, 2023
Co-producer Maddie explores epistemic injustice from her perspective as a psychiatric survivor and discusses how co-production has the potential to prevent and repair the harm done by this kind of injustice.
Epistemic injustice is when someone is wronged specifically in their capacity as a knower (someone who has knowledge). It undermines our ability to share our knowledge with others and to make sense of our own experiences. In her book, Epistemic Injustice: Power and the Ethics of Knowing, Miranda Fricker discusses two types of epistemic injustice. Testimonial injustice describes how we deflate our credibility judgments due to prejudices we hold about a speaker’s identity, for example not believing someone due to racism or ableism. In this kind of epistemic injustice, marginalised groups are treated as less credible than they actually are. Testimonial injustice is not just a case of not being believed when you speak, but also a case of not being asked because you are deemed unreliable or excluded from the spread of knowledge. The second type, hermeneutical injustice, refers to what happens when there is a lack of explanatory resources that prevents people in a particular group from understanding and being able to communicate their experiences. Imagine you were a woman experiencing sexual harassment before that concept existed, you would not be able to fully understand and articulate what was happening to you - this is hermeneutical injustice.
I stumbled across the concept of epistemic injustice on Twitter a couple of years ago in the context of mental health services and the ‘personality disorder’ label (this diagnosis is widely considered to be flawed and often leads to mistreatment from professionals as well as epistemic injustice). It helped me to make sense of my experiences of harm within psychotherapy and mental health services. I realised I was taught to dismiss my own knowledge and this had deeply affected my trust in myself and my confidence in what I know. From being disbelieved about my experiences to being told I should ignore what my body and mind were telling me to being told things that have happened haven’t really happened, epistemic injustice was everywhere. Being diagnosed with ‘personality disorder’ meant I quickly got used to mistreatment and having my experiences dismissed. Co-producing with the Co-Production Collective and other groups has provided me with a trustful atmosphere in which to learn how to trust my own knowledge and experiences again. Trustful conversation and inclusion of many different kinds of knowledge, my own experiential knowledge (stemming from my experiences rather than academic knowledge) included, has supported me in recovering from the epistemic injustices I encountered within services. One of the co-production experiences that sticks out is co-producing a response to a debate in an academic journal with other survivors, professionals and researchers, which felt contained and safe despite the difficult subject matter and having a big personal stake in the debate. I believe co-production is a vital tool in our fight against epistemic injustice within health and social care services.
Epistemic injustice stops us from flourishing. It undermines our very humanity, since knowing is such a vital part of being a human being. It can be particularly corrosive when it comes to knowledge about ourselves and our own experiences. You may lose confidence in your own knowledge or lose sense of who you are, leading to extreme self-doubt. As Miranda Fricker puts it in Epistemic Injustice: Power and the Ethics of Knowing: “when you find yourself in a situation in which you seem to be the only one to feel the dissonance between received understanding and your own intimated sense of a given experience, it tends to knock your faith in your own ability to make sense of the world”.
I have lost count of how many times I have told someone something about my mental health, only for them to turn to the ‘experts’ to confirm what I have said, as if I am an unreliable narrator of my own mind. What often happens is that service-user knowledge is only trusted if it is backed up by a researcher or professional. Service users’ knowledge is not viewed as equal, it does not hold the same weight. As the patient experience library’s 'Inadmissible Evidence’ report highlighted, patients’ testimony is considered to be a ‘story’ or ‘complaint’, whereas clinicians’ notes are viewed as objective and taken as fact. Service-user evidence is viewed as ‘soft’ and is often lost to epistemic injustice - what could patients possibly know? We can imagine a runaway train of epistemic injustice whereby testimonial injustice causes a person’s testimony to be discounted or not considered reliable evidence, which then leads to a further gap in our understanding of a particular experience, which causes further testimonial injustices.
Having a diagnosis of ‘personality disorder’ in the past, being considered by professionals to be manipulative and attention seeking was the norm. For people with a diagnosis of ‘personality disorder’, these false ideas about them due to the label they have cause their knowledge to be dismissed. For example, it is commonplace for such patients to be disbelieved about their suicidality, professionals dismiss it and refer to them as ‘threatening’ suicide or making ‘suicidal gestures’, which can lead to them being prosecuted for their suicide attempts (for example, being charged with wasting police time or obstructing a highway). It is also common for patients to be disbelieved about the abuse they report having experienced, or be blamed for it in some way. Physical problems also aren’t taken seriously, and the idea that people labeled with ‘personality disorder’ are malingering when they attend A&E or primary care services means that patients often miss out on the healthcare they need. In this way, epistemic injustice can lead to other kinds of injustice. Testimonial injustices that are ongoing and prolific often lead to other kinds of injustice, for example health inequalities and legal injustices/ miscarriages of justice. Epistemic injustice influences whose knowledge, ideas and contributions become public and whose don’t, leading to large gaps in our understanding of certain experiences.
Co-production, on the other hand, makes sure voices that aren’t typically heard or judged to be credible are listened to. Diversity of knowledge is respected and co-production integrates different kinds of knowledge, so that it does not treat knowledge stemming from lived experience as inferior. These ‘trustful conversations’, in which knowledge is valued and trusted, help to avoid epistemic injustice and repair the harm of it. The sense of community and inclusion that co-production produces, enables those who have been historically excluded from the spread of knowledge to have the opportunity to be heard. Many survivors find being believed by others, possibly for the first time, profoundly healing. People are re-connected with a vital aspect of their humanity through this embracing of their knowledge. Many charities also perform this function, especially whose staff are made up of people with lived experience in that area and/or who are created by and for the communities they support and represent. .
In order to avoid epistemic injustice, however, we actively need to work toward epistemic justice, and this requires questioning long held beliefs and correcting for prejudices we may have internalised. We can create an inclusive micro-climate through co-production, being proactive in correcting for epistemic injustice and working toward being as socially aware as we can be - thinking about power dynamics, privilege and creating reflective spaces in which to consider the challenges of co-production. We must give all marginalised people a favourable judgment when they discuss their experiences in order to correct for the gap in the explanatory resources which makes it difficult for them to articulate their experience in a way that makes sense to us. This is a goal for institutions as well as individuals. The strength of co-production is that it enables constructive challenge and valuing many different perspectives. Co-production can also be seen as challenging epistemic objectification, which is when someone is viewed as a mere source of knowledge rather than an informant. Co-production tells us we are not just objects to be passively studied, we are all working together as one team, everyone’s knowledge valuable and valued.
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