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!

Understanding Oneself through Others Day 1

Winterbourne House and Garden

This is a report by Jodie Russell. 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. 

On day one, postdoctoral researchers on EPIC Kathleen Murphy-Hollies, Eleanor Byrne, and Jodie Russell and EPIC project partner Michael Larkin introduced project EPIC and talked about their research to date. Kathleen is interested in how our self concepts and our relationships with others shape our identities. Eleanor is working on affective injustice, a type of injustice that relates to how a persons’s emotions are given (or denied) uptake by others. Jodie aims to establish an intersectional, feminist approach to psychiatry. Michael is going to work with the EPIC Birmingham team to develop a case study on epistemic injustice in young people with psychosis and his own research is about the importance on relationships for youth mental health.

Some key information about project EPIC

Our first speaker was our keynote Allan Køster from the Danish National Centre for Grief with a talk titled "Consolation: a fundamental existential category". Køster made the case for a new understanding of the phenomena of consolation to better capture how it relates to grief and loss. 

Slide from Køster's presentation

Køster noted, for example, that doctors are often faced with instances where they must inform a terminally ill patient of their prognosis. In such cases, there is little hope the doctor can offer the patient which raises the question of how we are to face such situations when inevitable and where little comfort can be offered. 

This is where we often turn to the practice of consolation, but what consolation is, is not yet clear. 

Køster thus presented an existential account of consolation based on the work of Heidegger. On this account, life is felt to be overwhelmingly burdensome, and this isn’t something we live in spite of, but, instead, it’s a fundamental aspect of our existence. 

Consolation should then be seen as, according to Køster, the attempt to unburden oneself or another from the weight of existence. This can be achieved through a kind of “delegating” or distributing the weight of that burden onto the world and others. For example, when we feel consoled by a walk through nature, part of the burden of existence is offloaded onto our environment. 

Our next presentation was given by Zuzanna Rucińska from the University of Antwerp. Her talk was titled "Understanding suicidality as a situated phenomenon" and focused on the cognitive and affective scaffolding of individuals with suicidal ideation. 

Rucińska began by presenting a puzzle around suicidality; individuals who experience suicidal thoughts are often ambivalent about life. Rucińska noted that in attempting to takes one’s own life, individuals often change their mind in the act. There is, nevertheless, for many individuals, an authentic desire to die that can come and go over a lifetime. Given this ambivalence, the question is raised as to why some people attempt to end their lives. 

Rucińska's presentation

Rucińska then proposed to answer this question through providing an account based on the interplay of the individual and her situation. Rucińska noted, for instance, the significance of the method of suicide; individuals do not change methods when their preferred method isn’t available, and studies on the restriction of particular products which are used in culturally preferred methods of suicide showed a reduction in suicide mortality. 

From this, Rucińska suggested that the environment can afford for suicidal actions; a suicidal person will perceive and attend to the features of her environment that will assist her in taking her life. These are features others might not necessarily notice due to our individual histories which have shaped how spaces are meaningful to us in specific ways. Moreover, the desire to die and to live are not contradictory but reflect the very dynamic relationship all individuals have with the environment where, for the suicidal, the opportunity to take one’s life might appear and recede as they navigate the world. 

Rucińska’s analysis implies further that a different environment will afford for different actions. Therefore, on a situated view, not only do we better understand the phenomenology of suicidality but this also potentially opens up new avenues for suicide prevention. 

After a hearty lunch break, our morning session was followed up by an interesting talk by Zamir Kadodia from the University of Exeter on a joint project with Joel Krueger on "Epistemic Injustice, Niche Construction & Neurodiversity".  

Kadodia introduced the neurodiversity paradigm from which their critique stems. This paradigm characterises neurodiversity as cognitive difference and states that the idea of a “healthy” or “normal” brain or mind is a construction. This is in contrast to the pathology paradigm which has characterised neurodiversity as disorder.  

According to the neurodiversity paradigm, neurodivergent individuals, such as those that are autistic, should be considered as a minority group. This is especially important to consider, Kadodia notes, as neurodivergent voices have been historically excluded from attempts to understand neurodivergence itself.

Kadodia and Krueger’s goal, however, is to highlight more surreptitious forms of marginalisation experienced by neurodivergent individuals. Kadodia discussed here an example from Miranda Fricker; in this case, an individual mistakes a shy person for being insincere because their shy behaviour (e.g. avoiding eye contact) makes the individual appear to be untrustworthy. Fricker counts this as a case of bad luck, not epistemic injustice, but Kadodia argued that this case looks different when we swap in the shy person for an autistic person. 

Slide in Kadodia's presentation

In this new example, Kadodia argued that this is a case of epistemic injustice because the neurodivergent person is being judged by norms of trustworthy behaviour that are determined and enacted by neurotypical individuals. As marginalised individuals, neurodivergent people don’t get to contribute to these epistemic norms, but are nevertheless expected to conform to them. This is worrisome because it means that norms of communication for neurodivergent individuals are given less credibility, which leads to a "neurotype identity prejudice", meaning that neurodivergent needs are neglected or, in the worst cases, stigmatised. 

Kadodia then problematised this further by translating this discussion around neurotypical norms to the framework of niche construction, arguing that stereotypes about neurodivergent people in the social imagination become entrenched in material practices, e.g. habits and interactions with the physical and social environment, just as neurotypical norms also become part of the habitual and embodied ways of being in the world.  

Kadodia thus called for the need for neurodiversification, which entails a greater representation of neurotypes and even a clash between different norms in order to facilitate a constructive conversation over the niches we live in. 

Slide from Latham's presentation

Afterwards, Sally Latham from Birmingham Metropolitan College talked to us about "Why self-help is not always helpful". Latham began with some self-help examples in popular culture we are all too familiar with, for instance, the idea of changing how you think in order to transform your situation. 

Latham made the case that much pop culture self-help emphasise a narrative of personal responsibility and individual choice; it is through our own efforts, these narratives suggest, that we will overcome our circumstances. However, drawing on Frank and Foucault, Latham argued that these narratives perpetuate a "ruse of liberation". This is achieved through technologies of the self, what are techniques used to understand oneself and even transform oneself.  

These technologies themselves can be used to control individuals through self-monitoring. In this way, Latham compared self-help to the panopticon; it becomes a way through which to constantly monitor and measure our 'selves' through the various exercises self-help prescribes. Self-help is given normative force for this purpose from its proximity to psychology and the authority of wellbeing 'experts'.  

The flip side of this, Latham described, is that reactions to negative life events that don't follow the positive, self-actualising framework of self-help become taboo. This is tantamount to epistemic injustice by excluding particular social experiences, which marginalises individuals who cannot face, e.g., illness with positivity. Due to the focus on individual responsibility, this may also lead to the blaming of vulnerable people for their negative outlook on life. Latham proposed, as one solution, that we should change the definition of self-help itself so that it might be more fruitful in future. 

Lastly, presented in a hybrid format, Lucy Osler (Cardiff University) and Louise Richardson-Self (University of Tasmania) closed the first day of the workshop with the talk “It Just Goes to Show That You Actually Need to Listen to Your Patients Sometimes: Distributed Cognition, Epistemic Injustice, and the (Under)diagnosis of Endometriosis".

Slide from Osler and Richardson-Self's presentation

Osler and Richardson started by informing us on some statistics on endometriosis. Shockingly, 1 in 7 people assigned female at birth are diagnosed, and diagnosis can take more than 8 years in the UK. The consequences of a delayed diagnosis involve a range of physical and social harms. Osler and Richardson, however, were focussing on epistemic and affective harms. 

They argued that there are persistent, systematic identity-tracking prejudices within wider western healthcare practices. In particular, women experience disproportionate levels of bias in diagnosis and treatment of health conditions. Richardson noted further that the level of confidence gynaecologist and women’s health GP’s have in their skills in managing patients with chronic pelvic pain is worryingly low. Moreover, gynaecologists report that they are not likely to consider patient beliefs and goals in regards to managing chronic pelvic pain.

Not only can this lead to physical and social harms, patients with endometriosis also suffer epistemic and affective harms as their testimony is overlooked or discredited. These patients are thus left with feelings of self-doubt, abandonment, shame, and mistrust of the medical establishment. This raises the question of what features enable the dynamic between medical practitioner and patient to play out in ways that perpetuate epistemic harms in the case of endometriosis.

Osler framed this issue in terms of niche construction and scaffolding; medical knowledge is often distributed among healthcare professionals, medical tools and textbooks which come together to form the niche of western healthcare. The underdiagnosis of endometriosis in women can be understood, Osler argued, in terms of the failure of this medical niche to epistemically support those with endometriosis. 

Rounding off their talk, Richardson and Osler then introduced the symbol of the “Endo Warrior” as a form of resistance of epistemic injustice through empowerment. The use of social media is critical this process as a safe space and efficient medium for sharing expertise and experience.

This talk closed the first day of the workshop. Next week we will report from the second day of the workshop. Watch this space!

Health and epistemic injustice at Festivalfilosofia

The Festivalfilosofia is a three-day public event held in the city of Modena and the nearby towns of Carpi and Sassuolo in Italy. It's a highly attended festival, drawing about 95,000 participants last year, with its YouTube channel boasting 45,000 subscribers. 

Official image of the 2024 edition of the Festival

This year, among the 52 philosophers and cultural figures invited to speak was Elisabetta Lalumera, who works at the University of Bologna and is part of the EPIC project team. On Sunday morning, September 15th, Elisabetta gave a lecture on the different concepts of health and well-being in medicine. Each concept not only describes facts but also conveys values, meaning that selecting a particular concept of health influences choices in care, research, patient support, and the doctor-patient relationship. The audience was large and diverse.

Elisabetta Lalumera at Festivalfilosofia

Later in the afternoon, Elisabetta shared the stage with Claudio Vagnini, Director of the University Hospital of Modena, where they discussed the humanization of healthcare. On this occasion, Elisabetta focused on epistemic injustice in healthcare. The audience, primarily composed of healthcare professionals, listened as she explained how this form of injustice often arises from unconscious biases. 

Panel discussion on humanizing medicine

Like cognitive biases, negative stereotypes toward certain groups, including patients, are hard to overcome, but healthcare professionals can learn to recognize and address them. Becoming familiar with the concept of epistemic injustice—without perceiving it as a reason to blame—can help healthcare professionals live their roles with greater awareness and fulfilment.

A chapter written by Elisabetta Lalumera on the promises of digital health in tackling epistemic injustice will be published in a forthcoming open-access book entitled Epistemic Justice in Mental Healthcare: Recognising Agency and Promoting Virtues Across the Life Span (Palgrave).

Navigating difficult emotions in interpersonal contexts

Eindhoven

This is a report of a symposium at the OZSW Philosophy Conference in Eindhoven in August 2024. The symposium was entitled: "Navigating difficult emotions in interpersonal contexts", and featured three presentations.

The Affective Injustice of Therapy-Speak by Carme Isern-Mas and Manuel Almagro (University of Balearic Islands)

Carme Isern-Mas's presentation

When we break up with people we tend to use therapy-speak: this was highlighted in a viral tiktok video on how to to best tell a friend that we no longer want to hang out with them. Therapy-speak is weaponised to promote and perpetuate epistemic and affective forms of injustice.

What is therapy-speak? Therapy-speak is use of therapeutic language and concepts into everyday communication: "He's such a narcissistic!", "I need to set some boundaries." 

It can have advantages: it enables us to share some experiences that we might not have acknowledge before we had terms for them (think about the important notion of "post-partum depression"). 

But therapy-speak is also problematic because it exploits the epistemic power of medical evidence and causes us to conflate descriptive and normative terms. Moreover, when the speaker is challenged, the fact that they used therapy-speak enables them to say that their view is not just one view on the matter, which can be disputed, but the correct account of the situation. If someone does not share that account, then it must be because they do not understand the situation.

According to Carme, the use of therapy-speak illustrates three forms of affective injustice: affect-related testimonial injustice, affective injustice or emotion policing, and emotional imperialism. Carme reviewed each form of injustice, using examples.

Epistemic Justice as Care in Trauma-Sharing by Kathleen Murphy-Hollies (University of Birmingham)

Kathleen Murphy-Hollies's presentation

There are situations where we do not believe what people tell us and yet we feel bad about dismissing their reports. For instance, when people recall traumatic experiences and they have disorganised memories; or when a friend tells us about a painful break up and does get all the details of the failed relationship right; what can we do?

In those cases when a person makes a statement we do not believe, two credibility assessments are needed:

1. one concerns the propositional content conveyed by the statement; and

2. the other concerns the perspective of the person making that statement.

In agential accounts of self-knowledge, the agential capacity to make up our own mind is central. This is what makes self-knowledge special, the capacity to regulate our behaviour, not necessarily the capacity to introspect accurately. If our claims about ourselves do not get uptake, then we are robbed of an exchange with other people about those claims, and of the possibility to gain self-knowledge in this regulatory sense.

Even false claims about the self can embed know-how and dismissing them can be a case of epistemic injustice. Engagement with those claims is the best policy: so even if the propositional content of the person's statement is something we do not believe, we may still engage with the person's perspective and see where they are coming from when they make that statement.

Hermeneutical Crowding and Moving on from Non-Bereavement Loss by Pilar Lopez Cantero (Tilburg University)

Pilar Lopez Cantero in Q&A

What happens when we refuse to move on when love ends or we suffer from unrequited love? Couldn't we educate ourselves out of this sort of self-victimisation? Are we just irrational? Building on work on narrative identity theory, Pilar Lopez Cantero argues that we experience a lack of narrative competence. 

We have story making capacities that we use to interpret the world and in particular the events that happen to us, and we can be better or worse at exercising those capacities. Such capacities include:

1. multiperspectivalism 
2. diachronic projection 
3. unification 

In a break up, those capacities do not work so well. We fail at multiperspectivalism because we can only take the perspective of the sufferer. We fail at diachronic projection because we can't look to the future. We fail at unification because we can't see the good things that happen to us, only the bad ones.

So the solution seems to be that we need to foster our narrative competence. But once the break up happens, we still see it the end of love as being a tragedy. This situation can be better understood via the notion of hermeneutical crowding. 

There are a number of cultural narratives that crowd out an alternative narrative: "there is only one love", "the end of love is a failure", "divorce is a disaster"... these prevent us from telling ourselves a different story about the break up.

For Pilar, we have a duty to foster narrative competence before break ups occur, and learn to recognise our narrative incompetence in everyday life to prevent feeling like a victim when a crisis occurs.