Narrative Deference

This blog post is a write-up of a paper by project postdoc Ellie Byrne which was published in Topoi in September as part of a special issue entitled Scaffolding Bad: Varieties of Situated Cognitive Harm edited by David Spurrett, Giovanna Colombetti and John Sutton. 

When I worked on the project Grief: A Study of Human Emotional Experience (PI Matthew Ratcliffe) at York, we obtained hundreds of first-person testimonies from grieving people about their experiences. I think regularly about some of the things people wrote, but there’s one in particular I keep coming back to: “My childhood is now only remembered by me. I’m an only child. So that time seems completely inaccessible.” (#208)

To me, this quote drew attention to the extent to which having other people available to corroborate our memories influences how we understand ourselves. We do this all the time and all throughout our lives: we might ask our parents to corroborate some significant childhood experience of ours, or ask a sibling to confirm that we’ve remembered something correctly. Later in life, we may ask a friend to corroborate how we remember coping with a breakup or our partner to remind us of a certain order of events in a particularly busy period.

We also enlist others to fill in the gaps for things we do not remember well. We might not really remember much at all about these experiences; perhaps just diffuse ‘feelings’ associated with certain events. In such cases, we might end up pretty reliant on our friends, family and partners to tell us what happened, how we felt about what happened and how those feelings have shaped who we are today.

According to the philosopher Richard Heersmink, autobiographical memories are the building blocks of our autobiographical self-narratives. Heersmink, situating some of his work within the field of ‘distributed cognition’, has emphasised that since our memories are distributed between people, it makes sense to say that our self-narratives are too. In my paper, I followed Heersmink in drawing attention to the extent to which we can rely on others for our autobiographical self-narratives, and the ways that this can be both good and bad for us. My paper introduces a concept which I call ‘narrative deference’, defined as the phenomenon whereby one is more dependent upon another person for central aspects of one’s autobiographical self-narrative than on oneself.

As I started to present this idea at conferences and workshops, there was a consistent theme in Q&A discussions: each time, multiple people in the audience had thought of contexts in which this phenomenon is harmful. This led me to think about the phenomenon in terms of another one of my research interests: affective injustice.

Affective injustice scholar Shiloh Whitney connects affective injustice to a distinctively affective form of gaslighting, the phenomena whereby casting doubt on someone is the means through which they are made to doubt themselves: “in gaslighting, the way others respond to me begins to impair an aspect of my relationship to myself. In particular, the noncooperative response I receive from some second person(s) when I express my experiences to them begins to impair some aspect of my ability to make sense of my own experience to myself in the first person” (Whitney 2023, pp.31–32). 

Understood this way, we can see how the affective influence others have on us can be used to undermine our self-trust over time such that our autobiographical self-narrative possibilities are restricted. While gaslighting is primarily discussed in the context of romantic relationships, it is being increasingly recognised how gaslighting can also occur in healthcare settings.

In a variety of contexts, an ill person might narratively defer to another because it presents itself as the best immediate option. Perhaps narratively deferring to my parents allows me to maintain a coherent or desirable autobiographical self-narrative. Perhaps deferring to my doctor allows me to make sense of an otherwise overwhelming and confusing situation. Perhaps deferring to my partner prevents conflict and maintains my bond with the person who cares for me. This deference can surely help me to secure lots of things that are good for me, but my most fundamental sense of self is also made vulnerable by it.

I think there is a lot of interesting and important future work to be done in exploring how this phenomenon operates in both epistemic and affective injustices in healthcare.

Eleanor Byrne

Eleanor is a postdoctoral research fellow at the University of Birmingham and part of Project EPIC. She specialises in affective and existential dimensions of illness experiences, particularly Functional Neurological Disorders. She has worked on grief in illness and experiences of post-viral fatigue such as Long Covid. She is currently developing a project on phenomenology and functional seizures. 

Communicating Ineffable Experiences

On the occasion of the Research & Development (R&D) Conference 2024 on October 15th, Jodie Russell, postdoctoral researcher on project EPIC, presented her work on ineffable experiences and the phenomenology of language to the Herefordshire and Worcestershire Health and Care NHS Trust.

In this post, Jodie summarises the key points in her talk.

Ineffability

Language as gesture

I want to make the case that it is possible for people who don’t themselves experience mental disorder to understand the experiences of those who do, even when these individuals struggle to communicate their experiences. This recognition is important as it may help us overcome some epistemic injustices as a result of assuming some experiences are un-understandable and therefore not worth trying to understand.

To make my case, I argue that we should take a phenomenological approach to language, drawing on French philosopher Maurice Merleau-Ponty for this purpose. On the phenomenological view, language is much more than the words on the page or the sounds that come out of our mouths; for Merleau-Ponty, language is a gesture at the world, which our whole body is involved in. When we speak, we are 'geared' towards the world in a particular way.

For example, when I talk about my cat Fluffy sitting on the mat, I’m gesturing toward Fluffy with my words, in the same way that I might point at Fluffy with my finger. My statement also indicates Fluffy’s ‘presence’; my statement turns us towards Fluffy in our shared world. At my mention, you might look for her or anticipate her to appear, for example, even if she’s actually just hopped out the cat flap.

A cat

The horizon of ideas

My language also implies certain things about me, the world I live in and the nature of Fluffy. For example, I live in a world where cats are domesticated. Her name also tells you that she’s a cat with a significant coat (hence her name) who is well known to me. Language, in the way that it points to aspects of the world, also implies further ideas beyond what we merely see; this is what Hayden Kee (2020) refers to as the ‘horizon’ of ideas.

Importantly, we are aware of other ideas implied by our language in virtue of being part of a shared world. As members of a linguistic community, we all contribute to a stock of shared meanings by both introducing new meanings, changing the old meanings, or reinforcing the old meanings. Which kinds of contribution we make depends on the context (my old saying maybe new to your ears, and thus I may contribute something new – in one way - to our personal pool of shared meanings). Nevertheless, we are, I claim, inherently embedded in a linguistic community and thus our language is (almost) inescapable from this pool of shared meanings.

Horizon

Sharing a linguistic community 

Individuals with ineffable disorder experiences are part of the linguistic community too; they may lack words for their experiences because there simply is no way to describe them in our community. But that doesn’t make their experiences totally incommunicable, I argue. We may just have to understand communication as being broader than words (someone may indicate with their body how they feel, and it is up to us to take up this meaning and try to integrate in into our horizon of ideas).

We must also acknowledge that describing an experience as ineffable is still, itself, communicating some of the experience. We may then need to tease apart the implications of that for other areas of the individual’s life (how they feel they live with an experience that can’t describe, e.g., as a mother, a friend or a working professional) to work around the areas that are more difficult to express.

Understanding individuals with mental disorder to be a part of our linguistic community, of which we are all inherently embedded, is key, I think, to overcoming some of the communicative issues that can arise when someone lacks words for a complex experience, and to gaining valuable insight into what it is like for them to live with said experiences.

Epistemic injustice and diagnostic approaches to mental ill-health

Epistemic injustice is evident in a plethora of contexts, some institutional, for which the discourse of hermeneutical injustice offers a helpful frame by way of its negotiation of meaning. Examples could include different treatments administered by healthcare institutions that unfortunately limit a patient’s voice and visibility. Other instances are well-trodden in the literature and media, and remain ever present, including gender and race issues, as presented by wide-ranging movements like Black Lives Matter and #MeToo.

A megaphone

Some examples of epistemic injustice are close to home and, sometimes, in the home. Relationships that once thrived can fracture when under sufficient pressure, whether between intimates, blood relations or in-laws, or something more general like the bonds between friends and other associates. In the throes of such breaks, testimonial injustice might be at work, concerned as this is with semiotic ruptures in spoken utterances that displace kindly intentions and good will. 

Where relational intimacy intersects with discourses that organise bonding experiences, for example, some kinds of religion and politics, the distinctions between hermeneutical and testimonial injustices are difficult to identify. The cliché that what is today’s deviance becomes tomorrow’s norm is continually challenged by the vicissitudes of lived experience that make possible the very identification of deviancy and normativity. The making of necessary interventions is, in this regard, highly problematic and, when it occurs in its zenith form, an achievement.

In 2021 my Master by Research dissertation, which explored some of these questions, was accepted in the University of Wales Trinity Saint David. My thesis, titled Diagnosis, misdiagnosis, and becoming better: An investigation into epistemic injustice and mental health, focused on diagnostic issues in the treatment of mental ill-health. Its main focus was to contextualise observations sometimes termed “empirical” by considering some of the existential contexts that experients of mental health treatment might find themselves in.

It is naturally the case that in an acute state, the solutions common to the biomedical model of mental ill-health are readily reached for. If a person suffers a psychotic breakdown then administering an antipsychotic drug could be a profoundly helpful and practical way of relieving distress. But there are many social domains that circumscribe, penetrate and, in turn, shape an individual’s diverse experiences of society. As well as religion, family, politics and the State, they could also include the stories we tell that frame those very societal categories. Psychoanalysis, literature, film and sociology are a handful of subject-disciplines that present telling-truth and telling-detail by offering “ways forward and out” of profoundly difficult moments in the life-course. My belief is that any line of enquiry that enables an experient to learn constructively and “re-find their feet”, so-to-speak, is both directive and instructive.

Antipsychotic medication

Concerned as it is with the mind as an aspect of embodiment that is organising as much as organised my research explores modes of being-and-becoming. In this regard, I am interested in two broad areas of exploration: first the clinical tools that enable a growth mind-set, whether employed by experients or physicians. Second, I lay out some of the general principles that might categorise those tools as philosophically resonant. They could be of a testimonial variety by highlighting signs and symbolic structures generative of psychosocial capacitation. 

Other, hermeneutical kinds may point to the diverse social movements that can lead an experient out of different forms of fog and miasma commonplace in contested diagnoses and misdiagnoses. In showing the presence and gravity of an epistemic injustice, there is laid the groundwork for a theoretical space where the experient can incrementally attain functionality. They may find ways of learning that which they themselves need vitally such that self-understanding becomes a real possibility. They might even encounter levels of personal, interpersonal and social responsivity expressive of epistemic justice and accountability.

Martyn Sampson

Martyn Sampson is an independent researcher of the philosophy of psychiatry and mental health. He is presently working on an extended project on stigma and phenomenology in regard to different psychiatric conditions.

Project EPIC on World Mental Health Day 2024

On the occasion of World Mental Health Day (#WMHD2024), we asked project EPIC team members to share a quote and a resource relevant to their work on epistemic injustice in healthcare.

Jodie Russell

Jodie is a researcher working at the University of Birmingham on one of EPIC case studies. Jodie is the author of "Problems for Enactive Psychiatry as a Practical Framework", published open access in Philosophical Psychology, highlighting the limitations of enactivism in reducing the harm and suffering experienced by individuals diagnosed with mental disorders.

 

Lisa Bortolotti

Lisa is an investigator in project EPIC, based at the University of Birmingham. Lisa has co-authored with Kathleen Murphy-Hollies a paper entitled "Why We Should Be Curious about Each Other", published open access in Philosophies, arguing that curiosity a good antidote to epistemic injustice. Lisa also edited and contributed a chapter to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Dan Degerman

Dan is a researcher on project EPIC, based at the University of Bristol. Dan's research explores the idea that it might not always be good to talk about one's mental health. If you want to know more, you can read Dan's article written for the Conversation.

Havi Carel

Havi is project EPIC principal investigator, based at the University of Bristol. Havi's work focuses on the experience of illness and she pioneered the application of the notion of epistemic injustice to healthcare. Watch this video where she introduces project EPIC.

Rabih Chattat

Rabih is a project EPIC partner, based at the University of Bologna. Rabih's work focuses on psychosocial interventions in dementia and the clinical psychology of ageing. He recently wrote a post for the EPIC blog on good living and social health as applied to dementia. Rabih also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Jude Williams

Jude is the project manager for EPIC at the University of Birmingham. Jodie volunteers for the Choir with No Name, the choir that gives homeless people a voice. If you want to know more about what the Choir is about and what impact it has, please read this.

Matthew Broome

Matthew is an investigator on EPIC and directs the Institute of Mental Health at the University of Birmingham. He recently co-authored a paper with Lucienne Spencer on epistemic injustice and claims of suicidality that can be found here. Together with Michael Larkin, Lisa Bortolotti, and Rose McCabe, Matthew contributed a chapter on youth mental health to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Eleanor Byrne

Eleanor is a researcher on project EPIC, based at the University of Birmingham. Eleanor works in the philosophy of medicine, on conditions that impact on the mental and physical capacities of those affected. In this podcast, she discusses an area at the intersection of philosophy and psychotherapy, focusing on experiences of fatigue.

Elisabetta Lalumera

Elisabetta is an EPIC project partner based at the University of Bologna. Elisabetta works in the philosophy of medicine. You can read this blog post where she talks about how to achieve epistemic justice in the biomedical paradigm. Elisabetta also contributed a chapter on digital health technologies to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Rose McCabe

Rose is an EPIC project partner based at City University, London. Rose specialises in research on clinical communication and contributes to the design of interventions to improve the capacity of professionals to listen to people who seek support for their mental health. See an example here. Together with Michael Larkin, Lisa Bortolotti, and Matthew Broome, Rose contributed a chapter on youth mental health to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Lara Calabrese

Lara is interested in ways of explaining and ameliorating the stigmatisation of people with dementia. She is a researcher at the University of Bologna, and is going to collect the data for one of EPIC case studies. 

Luigi Grassi

Luigi is an EPIC project partner, working at the University of Ferrara. Luigi recently shared some of this research interests in dignity and stigma in end of life care on the EPIC blog. Luigi also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot)

Kathleen Murphy-Hollies

Kathleen is a researcher at the University of Birmingham. Kathleen has worked with some entomologists to better understand delusions of parasitosis, when people come to believe that their bodies have been infested by insects. To know more about this fascinating condition and the challenges it poses, go here.

Martino Belvederi Murri

Martino is an EPIC project partner, working at the University of Ferrara. Martino recently shared of his research interests in demoralisation and testimonial injustice in an acute psychiatric ward on the EPIC blog. Martino also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Understanding Oneself through Others Day 2

This is a report by Jodie Russell and Lisa Bortolotti. On 23rd and 24th September Eleanor Byrne and Kathleen Murphy-Hollies organised a workshop at the University of Birmingham, bringing together researchers interested in the area of the intersection of epistemic injustice and distributed cognition. The venue for the workshop was the beautiful Winterbourne House and Garden. 

You find a report of day one here.

Winterbourne

On day two, Katherine Puddifoot offered her keynote presentation, entitled "Affect, Attention, and Injustice: The Injustice of Neglected Affect". Katherine started from the observation that affective states, like anxiety, worsen in some illnesses like COPD (Chronic obstructive pulmonary disease). Should we draw attention to those affective states? The talk focused on there being an injustice of Neglected Affect. The injustice occurs where people have affective states like fear and anxiety which are preventing them from having their objective basic needs like health, education, and longevity met.

Slide from Katherine Puddifoot's presentation

The people who are experiencing the affect could benefit from being given information about their affective states and how to modulate them. However, drawing attention to the affect risks leading them to engage in negative self-stereotyping, and fear judgement and generally distrust others—each of which could prevent them from gaining knowledge and understanding about their affective states and how to modulate them. 

This presents an epistemic dilemma for those who notice that others have affective states like fear and anxiety that are undermining their objective basic needs: whether they draw attention to the affective states or not, they risk causing the person experiencing the affect to miss out on knowledge and understanding about how to modulate it. Already vulnerable people, who possess affective states that are negatively impacting their objective basic needs, are further disadvantaged because they are unable to access knowledge and understanding that would support their objective basic needs by modulating their affect. 

J.P. Grodniewicz is presenting and Ellie Byrne chairing

The second talk was by J.P. Grodniewicz and Anna Drożdżowicz, and concerned epistemic injustice in the context of psychotherapy. For J.P, and Anna, psychotherapy is a form of psychological service that involves a collaborative process based on the relationship between (at least one) psychotherapist and (at least one) client/patient. Although psychotherapy can be a valuable experience with multiple positive outcomes, the path to achieving these outcomes may be long and difficult. Specifically, in some cases, patients/clients can be vulnerable to various forms of harm and injustice.

In this talk, they discussed the epistemic goals of psychotherapy and specific risks related to clients’/patients’ attempts to achieve these goals. First, they argued that the main epistemic goal of psychotherapy is deepening one’s self-understanding, characterized as a kind of objectual understanding which consists of grasping coherence-making relations between constituents of a body of information about oneself.

Second, they argued that patients/clients may risk various forms of epistemic injustice that may further hinder them from acquiring and/or deepening self-understanding in psychotherapy. Epistemic injustice arises when one’s capacity as an epistemic agent is denied. Epistemic injustice is widely discussed in the context of psychiatry; however, epistemic injustice in psychotherapy has received relatively little attention.

They offered examples that illustrate how three forms of epistemic injustice can arise in psychotherapeutic encounters:

• Testimonial injustice in psychotherapy occurs when the client’s words and/or capacity to provide knowledge are wrongfully assigned less credibility by the psychotherapist due to epistemically irrelevant factors rooted in systematic or interpersonal dynamics.
• Hermeneutical injustice in psychotherapy occurs when clients are wronged in their capacity to make sense of their experiences due to limitations in their conceptual resources or due to having the conceptual resources of the psychotherapist imposed on them against their interest(s).
• Contributory injustice occurs in psychotherapy when clients cannot contribute their perspectives and interpretations because their contribution is dismissed or undermined by the psychotherapist.

In each case, they argued that epistemic injustice may result in specific epistemic harms related to achieving and/or deepening one’s self-understanding in the course of psychotherapy. In the end, they briefly discussed some ways of mitigating these risks.

Slide from David Hahn's presentation

The third talk was by David Hahn and was entitled: "Self-Illness Ambiguity, Alienation, and Distributed Self-Understanding". David started from the observation that feeling uncertain about who we are can affect our agency and our relationships so it is important to resolve self-illness ambiguity. But how should we do so? In realist accounts, what is internal is who we really are but mental illness is simplified as it appears like a virus that "attacks" the self. The self is actually more intertwined and complex; the definition of what 'self' is, is a judgement or decision.

Self-discovery approaches presuppose self-knowledge, and reify both the self and illness. Most authors advocate for a narrative view of the self that can be just as reifying as the realist view even if the self is constructed. One of course could ask whether the narrative is "good" in the sense of authentic, but this may not be helpful to someone who is experiencing self-illness ambiguity.

If we reject both realist and constructivist view of the self-illness ambiguity, what is left? The self is not constituted of new facts but interpretations and a critical theory is needed, drawn from Jaeggi's account of alienation. On Jaeggi's account, alienation is a relation of relationlessness, a disrupted appropriation of inner and outer world. It is not to be understood as a lack of knowledge but as an inability to lead one's life, due to an alienated relationship between self and world.

So, overcoming ambiguities doesn't involve asking what is "really me" but, instead, asking practical-ethical questions in the process of learning how to live an unalienated life.

Slide from the presentation by Vespermann and Tirkkonen

Daniel Vespermann and Sanna Tirkkonen discussed existential injustice and focused on the phenomena of background feelings (which are phenomenologically different from emotions). Distressing background feelings of uncertainty, existential guilt, or worthlessness are enduring and remain unaffected by momentary changes of social situations. These feelings condition episodic emotions, thought processes, and behavioral tendencies. As affective states, they also impact on a person’s commitments, concerns, and values. Background feelings thus have an important guiding function in our lives.

Daniel and Sanna argued that distressing feelings require hermeneutic labor and prompt regulatory efforts, which are often scaffolded by the social environment. Given this premise, background feelings are generally vulnerable to unjust social influences. Despite the burgeoning literature on affective injustice and hostile scaffolding, how background feelings can be subject to social injustice has remained underdeveloped in these debates.

Because of their fundamental role for people’s affective, cognitive, and practical capacities, Daniel and Sanna call the wronging of background feelings existential injustice. They introduced two dimensions of existential injustice that lead to feelings of inadequacy and thus exacerbate mental distress. First, attention guidance and narrative practices can impede understanding and regulating one’s background feelings by limiting potential perspectives on one’s affective condition.

Second, they analyzed the regulatory role of attention guidance. Patterns of attention predetermine sources of affect regulation. Directing attention away from distressing stimuli or thoughts again helps to modulate emotional strain. However, what becomes perceptually salient is shaped in specific sociocultural contexts and these selection histories can lead to maladaptive adaptations to context-specific values.

Third, Daniel and Sanna clarified the idea that different narrative practices shape self-relevant information. Since narratives can be a means of determining criteria for the appropriateness and fittingness of affective states, they may also impose unjust demands on individuals’ affect regulation. Thus, narrative practices can generate cognitive frames that prevent beneficial reappraisals of affective interaction patterns.

Together, these dimensions reinforce the painful salience of distressing background feelings and foreclose experiences of support or validation. Being hindered from reframing one’s condition evokes feelings of inadequacy, that one’s affective condition is inappropriate or even incoherent.

Slide from the presentation by Isern-Mas

 

Carme Isern-Mas presented on "The Affective Injustice of therapy Speak". Although therapy speak is not properly analysed in philosophy, it is an important phenomenon to study in relation to epistemic injustice because it can be seen to promote both epistemic and affective injustice. Carme used some interesting examples to how how therapy speak can be weaponised, including the case of Jonah Hill who talked about 'boundaries' to control his partner's behaviour, or the case of a boss sending employees on a 'wellbeing' course to deal with burn-out caused by the stress in the workplace.

Obviously, therapy speak isn't always a bad thing and it can even help overcome epistemic injustice, challenge stigma around mental health, and help identity new phenomena. However, it can be misapplied, and lead to over-simplification, trivialisation, dilution of meaning, pathologization, and inappropriate self-diagnosis. As a consequence, people using therapy speak can discredit the testimony of others for no good reason, evade responsibility for their behaviour, signal that their status is privileged, and give to an impartial observer the impression that they are adopting an objective stance.

Therapy speak also exploits the authority of medical advice, conflates descriptive and normative terms, hides normative claims, and provides to the person who uses it the opportunity to merely deny the other person's perspective on the basis of this more "scientific" and "objective" stance that however may have no medical justification and a very vague relationship with the concepts actually used by therapists.

Therapy speak also perpetuates affective injustice by contributing to deny uptake for the other person's testimony, silencing different perspectives or objections to the "medicalised" interpretation of the situation, testimonial smothering, perpetuating the claim that the other person suffers from a credibility deficit and demanding that the listener (who may be the oppressed member of the group) regulate their own emotions in line with the speaker's interpretation. On a broader scale, it may also result into an example of emotional imperialism.

Day one speakers!

Day two speakers!