What is Public Engagement with Science?

Public Engagement with Science: Definingthe Project, coauthored by Melissa Jacquart and me, was published with Cambridge University Press in January 2025. This volume represents the culmination of years of Melissa’s and my efforts to explore the contours of what it is for academics to do public-facing work about science.

Engaging the public in science: what does this look like?

Way back in 2017, I received initial approval from my institution, the University of Cincinnati (UC), to develop a Center for Public Engagement with Science. Melissa Jacquart, also a philosopher, soon joined me at UC to co-develop the center. Initially, a lot of the work was identifying patterns in how academic science—broadly construed to include natural and social sciences, as well as other STEM disciplines—interfaces with public life. 

And, while we were interested in engagement opportunities created by the internet, our main focus from the start was how academic science interfaces with the local communities its embedded in. We quickly realized that we want to conduct and support public engagement that is (1) participant-centered, (2) interdisciplinary, and (3) community partnered. So that is the basic recipe for the UC Center for Public Engagement with Science, or PEWS.

One of Melissa’s and my early activities was to host a 2021 workshop convening academics interested in public engagement with public engagement practitioners (supported by NSF Award SES-1946951). Videos of this workshop are available on the PEWS YouTube channel. This newly published Element is our first of two planned publications summarizing our learning from that workshop—and, really, our learning from our years spent laying the groundwork for PEWS.

I like thinking of our Element as a tour of resources for and important considerations bearing on attempts to engage with the public about scientific research. Many academics, including Melissa and me, find themselves wanting to use their academic skills to engage not just with other academics but with public audiences as well. This can be motivated by the desire to share scientific content, to encourage more connections with science, or even to shift scientific research priorities toward topics of public concern. We wanted to create a volume accessible to readers from a wide variety of backgrounds who want a window into getting started with public engagement with science.

In this Element, we consider how public engagement with science is defined and what aims it might have (section 1) and explore the wide range of academic disciplines with resources to offer public engagement with science (section 2). We then consider the aims and techniques of collaborating across disciplines and with practitioners on public engagement initiatives, and we consider university structures that can support public engagement (section 3). We outline a goal-directed approach for developing public engagement with science initiatives (section 4). Finally, we consider the variety of forms public engagement can take and how public engagement can feature in research and teaching efforts (section 5).

Cambridge University Press developed the Elements format of publication to be midway between an academic journal article and a full-length book. Elements come in thematic series, all sharing the same cover illustration, and all curated by a series editor (or coeditors). Our Element is actually the first in a new series, also edited by Melissa and me, Elements in Public Engagement with Science. Together with an interdisciplinary and international Editorial Board, we are commissioning Elements on topics like STEM learning ecosystems, citizen science, children’s engagement in science, indigenous science, and more.  You can learn more about the series at its website.

Public Engagement with Science: Defining the Project is available open access, here: https://doi.org/10.1017/9781009475105

Angela Potochnik is Professor of Philosophy, Head of the Philosophy Department, and Director of the Center for Public Engagement with Science at the University of Cincinnati.​  She is the author of Idealization and the Aims of Science (2017) and Science and the Public (2024), as well as coauthor of Recipes for Science: An Introduction to Scientific Methods and Reasoning (2018, 2nd Ed. 2024) and Public Engagement with Science: Defining the Project (2025). She earned her PhD from Stanford University in 2007. 

Endometriosis in Later Life: A Hidden Healthcare Inequality

In honour of International Women's Day, Elisabeth Langmann highlights the importance of talking about women's healthcare through an intersectional lens in discussing her recent open-access paper, co-authored with Anna-Christina Kainradl, Merle Weßel, and Alekszandra Rokvity, "Endometriosis in Later Life: An Intersectional Analysis from the Perspective of Epistemic Injustice":

Endometriosis has long been framed as a disease of reproductive age – something that affects menstruating individuals and supposedly disappears with menopause. But what happens when these assumptions mean that suffering goes unnoticed, and necessary care is withheld? What happens when postmenopausal individuals continue to experience symptoms, yet the medical system fails to recognize or address their suffering?

In our recent paper, Endometriosis in Later Life: An Intersectional Analysis from the Perspective of Epistemic Injustice, we critically examine how sexism, ageism and epistemic injustice shape the experiences of postmenopausal individuals with endometriosis. 

We argue that the invisibility of endometriosis in later life is not just a gap in medical knowledge – it is a systemic injustice with real, harmful consequences.

Endometriosis is a chronic inflammatory condition affecting an estimated 10% of biological women. Despite its prevalence, it remains largely misunderstood. 

One of the most persistent myths is that endometriosis vanishes after menopause due to the decline in estrogen levels. This belief is deeply ingrained in both medical literature and public discourse. However, research shows that a significant number of individuals continue to experience symptoms well into perimenopause and beyond.

Yet major menopause guidelines, including those from the European Menopause and Andropause Society and the North American Menopause Society, fail to mention endometriosis – leaving postmenopausal individuals without recognition, research, or care. 

This silence has consequences: when healthcare professionals do not recognize endometriosis in postmenopausal individuals, symptoms are dismissed, misattributed to other conditions, or outright ignored.

Our research highlights how gender and age intersect to shape the marginalisation of older women with endometriosis. While gender bias in endometriosis diagnosis has been well-documented, where individuals are told that their pain is “normal” or “all in their head”, less attention has been given to how ageism compounds this issue, making older women more vulnerable to dismissal and misdiagnosis.

This erasure is reinforced by the perception that older women are unreliable sources of knowledge about their own bodies. Their reports of pain are dismissed not only because of long-standing biases about female pain, but also because of assumptions that postmenopausal individuals are no longer affected by reproductive health conditions. This results in testimonial injustice – where individuals are denied credibility due to prejudiced assumptions about their age and gender.

At the same time, the medical system lacks the necessary interpretive frameworks to recognize endometriosis in later life. When postmenopausal women seek medical care for pelvic pain or other symptoms, their experiences are often filtered through ageist and sexist biases. 

Instead of investigating endometriosis as a possible cause, healthcare providers may attribute symptoms to “normal ageing” or conditions unrelated to endometriosis. This is an example of hermeneutic injustice, where a lack of shared knowledge prevents individuals from making sense of and communicating their experiences.

Why This Matters: A Call for Change

The exclusion of postmenopausal individuals from endometriosis research, clinical guidelines, and public health discussions is more than an oversight, it is a structural injustice. As long as endometriosis remains framed as a disease of reproductive age, those who experience symptoms later in life will continue to be disbelieved, misdiagnosed, and left without adequate care. 

To address this, we argue for a lifespan approach to endometriosis, one that recognizes the possible persistence of the disease beyond reproductive age, integrates postmenopausal individuals into research, clinical guidelines, and public health policies, and challenges ageist and sexist biases in healthcare that shape medical knowledge and practice. 

Endometriosis does not end with menopause – but the belief that it does continues to shape who receives care and who is left suffering in silence. Thus, if endometriosis can last a lifetime, so should our commitment to recognizing, researching, and addressing it.

 

Elisabeth Langmann is a postdoctoral researcher in bioethics at the Institute of Ethics and History of Health in Society (IEHHS) at the University of Augsburg, Germany. Her research focuses on structural inequalities in health, particularly ageism, ableism, and the systemic exclusion of marginalised groups in healthcare. She is currently part of the DFG-funded project "Centring Marginalisation for Effective and Just Public Health Policy and Practice," examining how public health policies engage with marginalisation, whose experiences remain unrecognized, and what shifts are needed for more inclusive approaches. Rooted in feminist bioethics and social justice, her work explores how power, knowledge, and institutional biases shape health experiences.

Why agency is not compromised by delusional or conspiracy beliefs

This post is by EPIC investigator Lisa Bortolotti.

It may be surprising to realise how many researchers from various disciplines are interested in the relationship between clinical delusions and beliefs in conspiracy theories: on the surface, the former often have bizarre contents and signal a psychological disruption to the person's life that is often explained by a psychiatric diagnosis, whilst the latter seem to be deeply embedded in societal debates, are shared by groups (even by entire sub-cultures), and are not usually accompanied by distress.

In a recent paper, I argue that one thing they do have in common is how delusions and beliefs in a conspiracy theory are received. People who report delusional and conspiracy beliefs tend to be excluded from common epistemic projects. What do I mean by that?

Although there is a recognition that all speakers have a unique perspective and interests, and the capacity to pursue goals and make decisions, exploring delusional or conspiracy beliefs is not considered worthwhile. And it is considered a waste of time and resources to engage with people's goals and decisions of people when these are informed by delusional or conspiracy beliefs. That is because, in the eyes of the interpreters, those beliefs do not just happen to be false but undermine the confidence in the speakers' capacity to exercise their epistemic agency. 

But is this stance justified? I argue that it is not. It is a mistake to think that the presence of a belief that has some characteristics (e.g., a belief that we find implausible but that the speaker holds onto strenuously and identifies with) is sufficient reason to doubt the capacity of the speaker to exercise their agency. Rather, the endorsement of a delusional or conspiracy belief is usually a direct manifestation of the speaker's epistemic agency.

When do we endorse beliefs that are deemed delusional? When we have an unusual experience that demands an explanation. When we attempt to impose meaning on a confusing and distressing reality. When we need to manage overwhelming emotions to avoid an entire paralysis of agency. When we make sense of unexpected and distressing events. When we intend to show loyalty or affiliation to groups characterised by a certain ideology. When alternative explanations seem somehow unavailable or disempowering to us.

There are many reasons why people may endorse a belief that appears implausible to others and yet becomes important to how they see themselves and the world around them, to the point that it becomes difficult to give up the belief or recognise the strength of the evidence against it. But there is no good reason to think that the belief formation process or its outcome are themselves signs of irremediable irrationality or even of a pathology.

As I show in the paper, many of the cognitive biases and psychological needs that have been identified as antecedents of delusions and conspiracy theories characterise human belief formation more generally, though their influence can be heightened in some people due to background knowledge and reasoning style, or to their experience of adverse and stressful circumstances.

What does this have to do with epistemic injustice, you may ask. I think it is at the core of it. Epistemic justice is not achieved when people believe each other's testimonies uncritically or accept that all hermeneutical resources are equally good. Rather, epistemic justice is achieved when all epistemic agents are treated as such, and not as broken records, puppets or sheep: their views are not dismissed before being explored, but they are listened to with interest and curiosity. Agreement is not the goal, engagement is. 

How Psychiatrists Navigate the Complexities of Diagnostic Reasoning

 

With mental health problems being more openly discussed in public, and individuals with mental health issues becoming an increasingly important and sometimes critical voice in mental health care, the way psychiatrists practice their craft has also become an object of deeper interest for a broader audience. One central aspect of psychiatric practice is diagnostic reasoning. 

When you visit a psychiatrist because you are suffering, you expect them, among other things, to determine whether you suffer from a mental disorder and, if so, which one. While it's crucial to recognize that this is part of a psychiatrist's job description, what is not trivial is the further question: how exactly does a psychiatrist arrive at the diagnostic conclusions they write in their reports and communicate to their patients? How does the psychiatrist know what the patient’s mental disorder is?

A swift response that someone at least vaguely familiar with psychiatry might give is, “Well, they ask the patients for their symptoms and compare these to the list of mental disorders in the DSM/ICD, which tells them what the diagnosis is,” or something along those lines. Though tempting to close the matter here, it is not that easy. Criteria and symptom lists do not apply themselves to patients; it has to be judged whether they apply to the patient. Furthermore, patients are imperfect sources of information. Imperfect in the sense that they will not automatically and correctly tell you all their symptoms, and sometimes they may claim to have symptoms but misjudge their problems. 

For example, some patients think it is normal to be socially isolated as they have been so for many years, so they will not mention social isolation as one of their problems. On the other hand, patients may say they ruminate about something, while the pattern of cognition that constitutes their “rumination” is more accurately classified as generalized worrying, in the language of psychopathology. These cases show that the process of psychiatric diagnostic reasoning implies more complicated patterns of reasoning and information gathering. A truism for any clinician supporting this is: You can't just pick up a DSM and be good at diagnostics; diagnosing is a skill to learn.

Just picking up the DSM isn't enough; diagnosing is a skill!

If this is so, how does proper psychiatric diagnostic reasoning work? Not many philosophers of psychiatry have attempted to provide a theory of this practical aspect of the epistemology of psychiatry. Some work can be found among scholars committed to the Phenomenological Tradition of psychiatry, some in the works of those focusing on the interpersonal quasi-hermeneutic sense-making processes between clinicians and patients, and finally, some thoughts are to be found among philosophers of psychiatry approaching the field from the perspective of philosophy of science.

In my recent book “How Does The Psychiatrist Know?”, the first book-length treatment of psychiatric diagnostic reasoning, I side with those approaching it from a philosophy of science perspective. I argue we should consider how the procedures of clinical psychiatric diagnostics typically look, i.e., what is taught in many of the central textbooks on psychiatric diagnostics and the standards of the leading psychiatric expert communities. Based on this, psychiatric diagnostic reasoning can largely be seen as a cognitive modelling process, quite similar to the procedures we see in scientific modelling.

For clinicians, philosophers, and anyone else willing to dig through an academic textbook to get an idea of the whole story I put forward, the book is available open access.

 

Adrian Kind is a postdoctoral researcher at the Charité Medical University in Berlin, Germany. He holds a PhD in Philosophy and master degrees in Philosophy as well as Psychology. He is a psychodynamic psychotherapist in advanced training. His main areas of interests are philosophy of psychiatry, philosophy of psychology and philosophy of medicine. He also works on philosophy of sports and philosophy of religion.

Workshop report: Feeling and Being Understood (Day 2)

 On the 6^th and 7^th of February, EPIC project members Lisa Bortolotti and Jodie Russell spoke at the conference "Feeling and Being Understood" which was organised by the Phenomenology of Health and Relationships (PHaR) group at Aston University and took place over two days. 

You can read about the first day here.

The second day involved a series of talks on delegates' work in order to stimulate further discussion and thought along the themes of the previous day.

The first event was a lively workshop, led by Charlie Gunn (Aston University), that participants could really sink their teeth into, titled “A better recipe: collaborative, accessible study design and participant information through the use of edible and creative methodologies when working with vulnerable participants”. Delegates were invited to use a range of edible materials, including iced biscuits, fudge, icing sugar and food colouring, in order to construct a response to the prompt “What does good workplace mental health support look like?” 

In this process, we got first-hand experience of working with an accessible experience-making activity designed by Charlie to find that ‘sweet spot’ of a research method that encourages communication with vulnerable adults. Charlie also introduced us to the participant information sheets she created for the project with accessibility in mind. You can see them here and learn more about the project here.

"Eyes are windows to the soul": inspired by the concept of 'sonder' one group interpreted good workplace mental health as acknowledging that everyone has a rich inner life.

This workshop was followed by the first talk of the day, titled “The use of creative prompts to support an IPA interview”. Speaker Laura Martin (Sheffield Hallam University) led us through her work with probation officers, highlighting how it is a job with complex associations attached to it. For example, Laura described how probation is often thought of as “dirty work”, and for one participant her decision to become a probation officer was highly disruptive to family dynamics. This raises the question of why people train to become probation officers in the first place. 

In order to investigate and capture the journeys to this profession, Laura introduced us to the life map exercise where participants would trace their journey to becoming probation officers. The maps themselves were constructed in diverse ways, reflecting a diversity of narratives.

The third talk of the day was given by Valeria Motta (University of Birmingham) and titled “From participant to co-researcher: Navigating different levels of knowledge production with young people”. Valeria described her work within the ASP Belong Project, which focuses on using augmented reality through smartphones to help young people strengthen their sense of belonging. 

In conducting this research, she noted that the way we conceptualise ‘vulnerability’ has important consequences for framing research questions, as it can imply that an individual is inherently vulnerable regardless of policy change. 

However, Valeria argues that this obscures the role of systems, institutions and elites in effecting someone’s vulnerability, and, ultimately, their health. From this, Valeria aims, in her first study, to investigate experiences of belonging in young people with an integrative and functional account of vulnerability. 

Valeria then plans to undertake a co-researched study with young people to find the best arts-based methods for eliciting, expressing, and communicating vulnerable experiences. Both of these studies, she notes, involve different ways of working with young people.

Jess Webster (Aston University) led the fourth talk, titled “From Lego-balancing to Information Sharing – how do you make the jump?” Jess notes that early intervention for mental health is sorely needed, especially in the case of young people and children. 

To this end, a series of protective factors were introduced to pupils in schools to investigate which were the most important and effective, and therefore which ones could be implemented. Pupils were given Lego, a set of scales, ‘daily stressors’ and ‘protective factors’. 

Pupils then used these to represent how they felt a particular protective factor would mitigate (or balance) the stressors. For example, “self-kindness” and “school connectedness” where two such factors said to be effective by pupils. This information could then, Jess says, be turned into a PSHE lesson with a take-away tool kit. Conference delegates where then invited to participate in an activity practicing self-kindness, which involved decorating a hand with affirmations.

Ainhoa Rodriguez-Muguruza (University of the Basque Country) then presented on her research in collaboration with Arantza Etxeberria-Agiriano (University of the Basque Country) on “The Concept of “Relational Health”: How menstruating bodies are key for understanding health”. Ainhoa argues that women’s health is been neglected in medicine, in part, due to structural gender biases in science at large. 

Moreover, as medicine has become more specialised, the body has increasingly been conceptually carved up by function; menstruation is then relegated to the ‘reproductive function’, which is seen as just a woman’s problem. This then treats menstruation in isolation of other functions of the body. 

However, as Ainhoa highlights, the body cannot be understood in a a static and isolated way; menstruating bodies not only get sick differently, but they also react differently to drugs and treatments. In their work, Ainhoa and Arantza argue that a concept of health is needed to capture the dynamic nature of menstruating bodies, i.e. how bodies can change over the cycle of month and a lifetime. They refer to this notion of health as “dynamic, differential and relational”.

Jo Billington (Reading University) and Shioma-Lei Craythorne (Aston University) followed up a second zine-making session over lunch with their talk “Adapting IPA to work inclusively with diverse ways of being”. Jo led the delegates in a discussion on what “diverse ways of being” could mean, noting that while diversity exists in abundance in nature, academia itself lacks diversity. 

This discussion was based on the speakers’ recently submitted paper “Toward epistemic justice: using a multimodal Interpretative Phenomenological Analysis methodological approach in research with autistic children”. 

Jo and Shioma-Lei note in this paper that the double empathy problem – the idea that autistic and non-autistic individuals experience with world in very different ways – can be a useful lens for approaching research with autistic people. 

They note a resonance with the concept of the ‘double hermeneutic’ in IPA, where the investigator is trying to make sense of the participant’s account, which is itself the participant trying to make sense of their own experience. 

Following this, Jo led us to reflect on what adaptations we might need to make to facilitate this investigation and described to us her own experience of an interview with one of her participants which was able to continue successfully over email after problems communicating in person.

Joanna Farr (Birbeck University) introduced us to her research which explored the everyday experiences of adolescent girls in her talk, “Understanding young people’s everyday experiences using mobile phone video diaries, film and IPA”. Joanna asked participants to report their daily reflections using video diaries captured on their mobile phones. She noted that that this captured spontaneous, familiar and temporal experiences for rich data, but, importantly, it also gave participants a greater sense of choice and control as to what they shared. 

This method made the experiences of adolescent girls more accessible but were coupled with qualitative interviews in order to further explore the participant’s emotional experiences. Participants were also invited to a workshop where they were given their diaries back and taught to edit complications of them into longer videos.

Michael Larkin's "monster manual" for challenges in qualitative research

In the last block of afternoon sessions, Michael Larkin (Aston University) set to outline a unifying set of key challenges we face as qualitative researchers in his talk, “Attunement and Perspective through Collaboration: finding an ethical and just way forward for phenomenologically-informed qualitative research in psychology”. 

Drawing on the tropes of table-top roleplaying games like Dungeons & Dragons, Michael argues that we can understand these challenges to be like tests as we undertake the quest of our research, like gateways to other realms of knowledge, or like side quests that distract us from our main objective. 

Michael then reframes these challenges as classic D&D monsters; for example, the Rigour Zombie represents those individuals who police discourse about what counts as science. Rigour zombies are dangerous in that they can push the quest off course, and as adventurers we can become unhelpfully preoccupied with monsters that ultimately can’t do much harm. 

To keep on the right path, however, we need only rely on the equipment we already have in our trusty bag-of-holding, i.e., our skills in attunement, collaboration, and perspective taking.

Sally Latham (Open University) followed with a discussion of the problem of self-deception in her talk, “Narrative therapy and the falsehood objection”. Sally notes that Narrative Therapy is built on the premise that stories influence identity and life opportunities, and so to combat a self-narrative about the individual’s deficiencies and problems Narrative Therapy seeks to identify unique events that challenge that narrative. 

However, Sally argues that there is a risk of self-deception; the individual receiving the therapeutic treatment might develop false memories or the therapeutic process might misleadingly (or falsely) imply that the event they are pointing to generalises to the rest of someone’s life. Sally argues this is unethical because it violates autonomy; you cannot fully consent to being deceived. Because of this, it wouldn’t be sufficient to merely disclose that false memories and false implied generalisations are possible with Narrative Therapy. A different solution is needed.

Lastly, Jodie Russell (University of Birmingham), postdoc in project EPIC, closed the day with her talk, “Intersectional invisibility and its impact on belongingness and being understood”. Her goal was to give a phenomenological account of “intersectional invisibility” and discuss its implications for qualitative research. Intersectional invisibility refers to when a person has multiple group identities and belonging to one group renders them ‘invisible’ with respect to some of the social structures that affect other groups. 

For example, men who experience mental disorder may be rendered invisible because of patriarchal expectations about what constitutes the group ‘men’; this may not include men who show vulnerability or emotion, which might be typical for people with mental disorder. 

These men may then be invisible with respect to the group ‘men’, but they might not be seen as fully fledged members of the group ‘people with mental disorder’ either as they may still hold some patriarchal norms and values not typically shared by the rest of the group. 

Intersectionally invisible groups, like men with mental disorder, might not then be able to participate in group activities, like generating and sharing knowledge for self-understanding, simply because the norms of one group may conflict with the norms of another.

Workshop report: Feeling and Being Understood (Day 1)

Last week, EPIC project members Lisa Bortolotti and Jodie Russell spoke at the conference "Feeling and Being Understood" which was organised by the Phenomenology of Health and Relationships (PHaR) group at Aston University and took place over two days. 

The first day was filled with a number of inspiring workshops to introduce attendees to new methodologies in health research, new ways of working and new ideas to consider in our projects. Here is a brief summary of each talk, including links to further information.

Workshop 1, titled “Dialogical Co-analysis: a new methodology for conducting qualitative analysis with young people as co-researchers” was presented by Michael Larkin (Aston University), Rachel Temple (McPin Foundation), and the Agency-in-Practice team, including members of the Young People Advisory Group (YPAG). The speakers described their experience as part of the Agency-in-Practice Project, which is made up of an interdisciplinary team of researchers as well as young people with lived experience of mental disorder. 

This project started as a collaboration between young people and researchers to analyse transcripts and videos of interview participants that blossomed into a methodology for co-analysing research. Members of the YPAG described their input into the methodology, for example, by calling out unhelpful jargon, and the creation of a space where everyone can be heard. Rachel Temple also emphasised the importance of agency, which inspired the project, and the necessity to balance this with safety by, for example, signposting, debriefing and taking breaks. Rachel also notes that this is important for both the young people involved and for the academics too. You can read more about the project here.

Workshop 2, titled “Photovoice, with and without the voice: combining collaging, phenomenology and photographs”, was led by Will Day (Aston University). In this workshop, Will introduced delegates to the photovoice methodology, showing us how he used such a method himself in the development of his PhD project which focused on the lived experience of those with invisible chronic illnesses. He noted that, in the context of welfare reforms, these individuals faced significant stigma and were not often discussed in the psychological literature. 

Will sought to capture the day-to-day lived experience of this group during the pandemic by asking participants to take and submit photos that represent their days. Each photo was then analysed using Boden & Eatough’s (2014) framework for analysing drawings, generating an individual analysis for every photo. The photos were also cut up and collaged to group them by mood, generating group experiential themes. It is in this way that photo voice is embedded into Interpretative Phenomenological Analysis (a qualitative research method) for a rich discussion of the participants lives.

Our thematised statements from workshop 3

Workshop 3 developed and expanded on the use of the photograph in qualitative research. In their talk, “Polyphonic Photo Analysis in phenomenological research”, speakers ‪Mikołaj Zarzycki (Liverpool Hope University), Shioma-Lei Craythorne (Aston University) and Kisane Prutton (Derby University) walked us through their new methodology for analysing photographs. The speakers note that photos are usually used to elicit verbal data but with Polyphonic Photo Analysis it becomes possible to analyse the photos themselves. Inspired by Dostoevsky, the method involves being open to multiple perspectives at the same time. Using photos collected for Kisane’s PhD project on experience of peacebuilding for women in Northern Ireland, the conference delegates were split into roughly 3 groups, each attempting a stage at the analysis. 

Group 1 focused on the first stage: observing the visual features of the photo, including its composition, colour, and framing. Group 2 focused on the next stage, which involved interpreting the photo from the research perspective (i.e. an outsider perspective) to look for possible meanings in the photo without the context of the participant. Group 3 then took on the analysis state which involved interpreting the photo alongside the participant’s narrative to explore further features of the participant’s lifeworld. The last stage, completed by the speakers themselves, involved taking the statements we made in the analysis process and synthesising them (see photo above).

During the lunchbreak, Julie Kane (Aston University) lead a pop-up workshop on “Exploring sense of belonging through zine making” where Julie talked us through some of the history of zines, introduced to some beautiful examples and gave us free rein to create our own!

A range of colourful zines from which to draw inspiration!

Workshop 5 was delivered by Lisa Bortolotti on her work with the Agency Project and EPIC, co-authored with Rose McCabe. In her talk “Epistemic injustice, agency, and youth mental health”, Lisa argued that when responsibility is associated with blame, blame can damage the relationship between the patient and their healthcare provider, undermining knowledge exchange and mutual trust. As agency can be threatened by a number of environmental factors and factors outside our control, we never have full responsibility for an event .

Drawing on the work of Brandenburg (2018), Lisa argues that in the therapeutic context responsibility should be replaced by the affirmation of the person's capacity to contribute to change. This is important because it reduces the risk of burdening young people experiencing a mental health crisis with responsibility for past events and implying that they are to be blamed. For more information on enhancing the agency of young people in mental health, see the post on the McPin blog here.

Workshop 6 introduced us to a narrative development of Interpretative Phenomenological Analysis (IPA). Nathan Thomas (University College London) led this talk, titled “Understanding Experience using a Narrative Variation of Interpretative Phenomenological Analysis (NIPA)”, which took us through the adapted steps to generate a narrative analysis of a qualitative interview. Nathan’s account draws on both narrative and hermeneutic phenomenology (as developed from Paul Ricœur) which looks at experience as it presents itself in a narrative text (in this case, an interview transcript). 

Narrative gives our experience a kind of order, and so when we analyse narrative we also analyse an aspect of experience itself. So in Nathan’s narrative variant of IPA, the narrative structure needs to be maintained. To do this, instead of breaking down the order of a participant’s account to group statements into themes (as is done in IPA), Nathan suggests developing a narrative description of the account. This should read as if the participant were telling their story, capturing the essence of the interview and amplifying key information. Participants can also be involved in the process to give them the chance to craft their story. The resulting narrative replaces the transcript in the rest of the analysis, informing the themes which are compared and contrasted with other participants.

A floorplan of where medication is kept in the home

The last workshop of the day was a powerful discussion lead by Zoë Boden-Stuart (Open University) titled “Medications and care: a reflexive workshop exploring embodiment, spatiality and meaning”. In this workshop, delegates were invited to participate in three creative exercises. For the first, we drew floorplans of our living spaces, noting where in our homes we kept medications and the factors that have led to them being there. In discussion, we noted many similarities and differences in locations as well as the implicit reasons that go behind choosing these places. In the second exercise, we chose a medication box from a selection, reflected on some of the phenomenal features of the box (e.g. its texture, weight, size) as well as its meanings to us. This culminated in the third exercise where we reflected on a situation in which we were to give these medications to someone else.

Psychiatry as mind-shaping

 In this post, project EPIC postdoc Jodie Russell summarises her recent paper “Psychiatry as Mind-shaping”, published in Erkenntnis:

I make the case that researchers in mental health, clinicians and the wider public participate in a process called mind-shaping. By highlighting the involvement of these individuals in shaping the minds of people with disordered experiences, we can better understand phenomena like looping effects (when the behaviour of the person being labelled changes in response to that label, which in turn changes the meaning of the label). Moreover, characterising psychiatry as mind-shaping also helps us understand harms like epistemic injustice in a new light. But, first, let me unpack what I mean by psychiatry as mind-shaping.

Mind-shaping is a particular theory of social cognition – the study of how we understand each other. In contrast to traditional theories of social cognition, where we try to ‘read’ the minds of other people, the mind-shaping thesis proposes that understanding occurs through trying to get another person to conform to some set of shared rules. For example, I understand that my partner is hungry because their behaviour conforms to certain norms of being a ‘hungry person’, i.e., they rub their stomach, look wistfully at the kitchen, or graze on near-by biscuits. In this example, I try to understand what ‘type’ of person my partner is trying to be, assuming their behaviour conforms to some norms of that ‘type’ that I also adhere to.

In this way, I argue that researchers and clinicians are trying to understand what kinds of people individuals with disordered experiences are. In other words, clinicians and researchers might try and understand whether someone is a ‘well’ or ‘unwell’ person, a person with schizophrenia, or a person with a brain disease etc.

However, under the mind-shaping view, this process of categorizing people comes with certain expectations; in order for social understanding to be successful, it may be necessary to conform to certain norms. For example, for my partner and I to successfully coordinate over our shared task of making food for dinner, I really need to know that my partner is hungry. If they act hungry when they aren’t, we’ll make food for no reason. If they don’t act hungry when they are, my partner starves (if they are feeling melodramatic). Either way, if my partner is unreliable in conforming to norms, it makes working together to make dinner more difficult, and communication in general might struggle if they are not in some way reliable. There are therefore certain expectations at play in social understanding; if you are a hungry person, you should act like it. This is what it means to be mind-shaped.

This has, however, some unintended consequences when it comes to mental health research, namely, that individuals with mental disorder who are labelled may be prone to particular “expectancy effects”. In other words, by being labelled or studied in a particular way, as a particular kind of person, people with mental disorder may be obligated to act in certain ways. One such case study of this can be seen in a study conducted by Örmonet al. (2014). They noticed that the women in their study who had experienced abuse did not often have their experiences validated by clinicians, with their history of abuse considered irrelevant to diagnosis, and thus the women did not receive what they felt was the appropriate care. As such, the women responded to this treatment by changing their behaviour to conform to particular disorder categories that were seen as worthy of care (such as bipolar disorder). In this case, I argue that the women conformed to norms of being mentally unwell that clinicians typically expected to find; by understanding their patients as unwell, the clinicians were then able to provide some kind of care for these women. In this way, both the patients and clinicians were mind-shaped in order to coordinate on some goal (getting care for the women).

The consequences of this particular case study, however, was that the struggle of the women to have their abuse acknowledged was then interpreted by clinical staff through the lens of mental illness. This struggle was then either a mental health problem or secondary to the mental health problem. It is in this way that I think we should pay closer attention to the effects of mind-shaping, and how it may perpetuate epistemic injustices. Given that a core part of social understanding is the expectation we conform to shared norms, we may not only present very narrow options to individuals with mental disorder if they want to be understood by others (e.g. through the lens of specific disorder categories that may or may not fit their experiences), we may also exclude as irrelevant, or un-understandable, those behaviours, thoughts and feelings, which don’t fit our expectations but that are nevertheless important to the individual in question. The solution, I would want to propose, is giving people with mental disorder more agency to determine what norms are in play so that they might be better understood on their own terms.

Workshop report: Loneliness, Metaphor & Empathy

Last week, Project EPIC held a workshop at the University of Nottingham entitled 'Loneliness, Metaphor & Empathy'. This workshop featured three talks by Project EPIC postdocs Fred Cooper (Bristol), Kathleen Murphy-Hollies (Birmingham) and Eleanor Byrne (Nottingham). 

The workshop theme reflects some current research interests of the project postdocs. All three talks teased out varieties of epistemic injustice that can arise when certain forms of suffering are marginalised by others. Fred asked what epistemic injustices might be at stake in claiming that certain experiences are inherently unknowable, Kathleen discussed the role of various prejudices in shaping how uptake-worthy we take people's claims to be, and Eleanor discussed the extent to which attempts to empathise with others can result in epistemic injustices.

Fred began the day with his talk The Naked Terror: Joseph Conrad, 'True Loneliness' and the inability to know. Fred discussed themes of loneliness in Conrad's Under Western Eyes where there is an implication that loneliness--or rather, 'true loneliness'--is characteristically unknowable. He gives us the following quote:

Who knows what true loneliness is-not the conventional word, but the naked terror? To the lonely themselves it wears a mask. The most miserable outcast hugs some memory or some illusion. Now and then a fatal conjunction of events may lift the veil for an instant. For an instant only. No human being could bear a steady view of moral solitude without going mad. 

Fred Cooper

Fred argued for a closer historical interrogation of the ways that epistemically  unjust or constraining narratives on health and ilness are sustained over time.

Kathleen then talked about metaphorical meaning and giving 'uptake' to the experiences of people with delusions and various other false beliefs. She argued argued that the content of what people say is often over-scrutinised for accuracy and truth, and that these tendencies are often exacerbated by prejudices.

Kathleen Murphy-Hollies

For example, she mentions how the claims of asylum seekers are often over-scrutinised for truth and accuracy as a result of certain prejudices. Ultimately, Kathleen's position is that even when we highly doubt that a certain belief expressed is true, there are still possible meanings to give uptake to in our engagement with them. Kathleen argued that dismissing those meanings can constitute a form of epistemic injustice, and that giving uptake to metaphorical meaning is a way of engaging with the agents' best attempts to communicate their experiences.

Some members of Project EPIC (L>R; Alice Monypenny; Fred Cooper; Ian James Kidd; Eleanor Byrne; Kathleen Murphy-Hollies)

Eleanor Byrne then closed the day with her talk about empathy. Drawing on ongoing collaborative work with Allan Køster (Danish National Centre for Grief), Eleanor discussed the limits of empathic understanding in contexts of profound suffering. She engaged with recent critiques of empathy which state that certain experiences are too alien, too profoundly catastrophic, to be understood by others. She concedes that some experiences can evade understanding, but maintains that some basic form of empathy remains possible no matter the circumstances at hand. This, she called ground empathy. 

Eleanor drew on a passage by Georg Simmel in order to argue that no matter the profound difference in your circumstances, it is always possible to empathically relate to the other person by attending to the fact that we all share the same existential fragility. Simmel writes:

All the thoughts and fates that make us suffer are actually only the occasional causes that bring about a part of the infinite potential for suffering that is inherent in us. [...] The most uncanny thing is that on such occasions we get the inkling of an immeasurable store of suffering that we carry around with us as if in a sealed vessel; a dark being that is not yet reality, but is still there somewhere, from which fate always releases certain parts, but leaves behind an inexhaustible amount. Most of the time this vessel rumbles quite quietly within us, but sometimes, when a single misery or shock opens it, it starts to move, to tremble dully, and we feel – we ourselves do not know where or what it means – this terrible treasure of potential suffering that we carry around with us that is our dowry, which can never be fully realised, cannot be exhausted by any real misery.

(Simmel 1923, Fragmente und Aufsätze)

Eleanor takes this passage to be illustrative of the inherent fragility that lies within all of us, waiting to be made salient by misfortune. It is by attending to these facts of life, the contingency of our position, that we are able to empathically relate to (if not understand) others in times of catastrophic upheaval, illness and suffering. 

This was the first official Nottingham event for Project EPIC. Keep an eye out for updates and adverts for upcoming events across Nottingham, Bristol and Birmingham.

Deaf Interpreters and Epistemic Injustice

Today's post is a summary of Dr Kristin Snoddon's upcoming talk for the Linguistic Justice Society on the 27th of Jan, at 8:00 EST or 14:00 CET. You can register for the talk here. 

Deaf people are generally at greater risk of epistemic injustice—being wronged in their capacity as knowers—due to not being understood by those around them. In Fricker’s (2007) famous taxonomy, epistemic injustice encompasses testimonial injustice—being wronged as a giver of knowledge—as well as hermeneutical injustice—being wronged as a subject of social understanding. Deaf people also experience the epistemic exclusion which occurs when disabled people’s knowledge is refused admission into the general stock, and are perceived as having reduced moral status.

An example of testimonial injustice, compounded by having a perceived reduced status, occurs when a deaf person giving an account of their social experiences is not seen as credible. These social experiences could, for example, relate to not being understood, not understanding what has been said, and/or being left out of conversations. Hermeneutical injustice can be said to occur when due to other people’s lack of familiarity with deaf people’s social experiences, those experiences are not understood. This is because other people lack the conceptual resources to make sense of the deaf person’s behaviour. As Caponetto and Piazza wrote in an earlier blog post, hermeneutical injustice feeds off testimonial injustice since not being believed and not being understood are mutually reinforcing phenomena.

In my research, I seek to show how deaf interpreters, sign language interpreters who are deaf, illuminate the concept of epistemic injustice. Deaf interpreters often work alongside hearing sign language interpreters and provide what is termed intralingual interpreting within the same target language. In other words, both the hearing interpreter and the deaf interpreter use the same national sign language, with the hearing interpreter interpreting between a spoken and sign language and the deaf interpreter making use of discursive and semiotic resources to convey meaning that extends beyond the hearing interpreter’s rendition. (However, some deaf interpreters, such as deaf Canadian American Sign Language-Langue des signes québécoise interpreters, also provide interlingual interpreting between different source and target languages.)

"LSQ" in Langue des signes québécoise, curtesy of Danachos CC BY-SA 4.0

The deaf interpreters’ role is often seen as meeting the needs of deaf individuals who lack proficiency in a named language—such as migrants, people with additional disabilities, and people who do not know a standard sign language. These deaf individuals are at greater risk of epistemic injustice due to not being seen—at least by hearing sign language interpreters and other professionals—as intelligible. From this perspective, intelligibility is based on knowing and using a standard, national language, such as the sign language varieties which are most often taught in interpreter training programs and which have their origins in deaf schools.

Interviews with Canadian deaf interpreter participants described formative experiences that were rooted in deaf childhoods where a sign language was readily accessible in addition to other languages, and where they encountered a broad range of deaf lives. However, as recent work by Haualand et al. (2024) shows, most deaf children today lack spaces where they can acquire and use sign language. Without early and full access to a language in which deaf children are understood, there is ironically both an increased need for deaf interpreter services and a lack of support for the conditions that foster underlying deaf interpreter competencies.

In their work, deaf interpreters fill gaps in interpreting processes and support understanding for hearing interpreters as well as for medical and legal professionals. This support in turn enables public institutional processes, such as medical appointments and court hearings, to run more efficiently. More fundamentally, deaf interpreters see intelligibility where it has been overlooked and construct intelligibility in interaction with diverse deaf people. This enacts justice on both an epistemic and existential level, since being understood opens the door to other forms of justice and new ways of being in the world.

 

 

Kristin Snoddon is Associate Professor with the School of Early Childhood Studies, Toronto Metropolitan University, Canada. Her current research focuses on sign language ideologies and ideologies of understanding related to deaf interpreters.

Aesthetic Injustice, Epistemic Injustice, and Disability

Today's post comes from Professor Dominic McIver Lopes:

Aesthetic Injustice attempts to spotlight an overlooked variety of injustice. One way to get a fix on it contrasts it with what I call ‘weaponized aesthetics’. Another is to consider a case study of aesthetic injustice that targets disabled people. A nice feature of this case study is that it highlights the relationship between aesthetic injustice and epistemic injustice.

Cover for Aesthetic Injustice

Let’s start with the contrast between aesthetic injustice and weaponized aesthetics.

Weaponized aesthetics is well known to philosophers and other scholars. Unjust treatment of members of identity groups often harnesses stereotypes, some of which are propagated by elements of aesthetic culture, especially visual images and narratives. For example, some movies portray disabled people as helpless and pitiable – or as villainous. Buts of aesthetic culture serve as tools of social injustice.

An aesthetic injustice is a social arrangement that harms people in their aesthetic capacities, such as capacities to appreciate, make, curate, or collect. These capacities are exercised in social practices: Impressionism and social media memes are two different aesthetic practices. So, in aesthetic injustice, participants in aesthetic practices are harmed as makers, appreciators, and the like. Since harm is not sufficient for injustice, the book argues that harms are unjust when they cut against interests in the diversity or the autonomy of aesthetic practices.

That puts it all rather abstractly; an example would help. Consider tactile pictures used by blind people. That last sentence might surprise you. An impressive suite of studies by the Canadian psychologist John M. Kennedy showed that blind people correctly interpret drawings where raised lines trace objects’ contours. They can also make raised-line drawings, and some of Kennedy’s subjects figured out on their own how to render scenes in perspective. This came as a surprise not only to sighted people but also to blind people. Everyone had internalized a conception of vision and depiction that made the very idea of ‘tactile pictures used by blind people’ seem absurd.

The neglect of tactile imaging is arguably an aesthetic injustice. It harms blind people by depriving them of access to a field of aesthetic engagement in ways that cut against an interest in there being diverse imaging practices and also an interest in there being an imaging practice where blind people are at home. The argument is hardly simple; it must navigate some tricky obstacles. You’ll have to read Aesthetic Injustice for more details!

There’s something that the book doesn’t emphasize. Recall that an aesthetic injustice is a social arrangement that harms people in their aesthetic capacities. This account leaves opens the means by which aesthetic injustice is produced. One might think that the very idea of tactile pictures seemed absurd as a result of epistemic injustice, specifically what Miranda Fricker called ‘hermeneutical injustice’.

Hermeneutical injustice is not the same as aesthetic injustice. Distinguishing them equips us to study how they interact. As I write in the book, different kinds of unjust social arrangements ‘cling to each other like burrs’.

Dominic McIver Lopes FRSC is University Killam Professor at the University of British Columbia. He works mainly in aesthetics, and has published books on the meaning and value of images, new technologies in the arts, the nature of art, and aesthetic value. 

His most recent book, Aesthetic Injustice, was published by Oxford University Press in 2024.

Epistemic Justice in Mental Healthcare

This week we announce the publication of an edited collection which is entirely open access: Epistemic Justice in Mental Healthcare: Recognising agency and promoting virtues across the lifespan (Palgrave 2024), edited by myself, Lisa Bortolotti. The book is an output of project EPIC, featuring eight new chapters exploring epistemic justice in mental health. 

Epistemic Justice in Mental Healthcare

In the Preface (downloadable here), Matthew Broome and I frame the discussion as a way to affirm the role of the mental health patient as a person, an agent, and a collaborator. When we are mental health patients, we are persons because we are more than our health or our diagnosis, we have needs and interests that matter and that affect the way in which our health impacts our lives. 

We are also agents, because despite the vulnerabilities of our status as patients, we have a perspective that matters and the capacity to contribute to positive change. Crucially to the success of clinical encounters, we are partners in the project of addressing our health issues. We can collaborate with healthcare professionals by sharing our experiences and participating in decision making.

Chapter 1, Being understood: epistemic injustice towards young people seeking support for their mental health, is authored by Michael Larkin with members of the Agency Projects team including lived experience researchers from McPin. It addresses some of the factors that make clinical interactions unsuccessful, offering some suggestions for improving clinical communication. The focus is on ensuring that young people are understood and supported at times of crisis, that they are not blamed for the difficulties they face, and that they are not reduced to a diagnostic label.

Chapter 2, Challenging stereotypes about young people who hear voices, is authored by myself, Lisa Bortolotti, Kathleen Murphy-Hollis, Fiona Malpass, and young people from the Voice Collective. It highlights three stereotypes associated with voice hearing that have harmful consequences for young people's relationships and opportunities to thrive, in the family, the school, and the clinic. These are incompetence, dangerousness, and diversity leading to exclusion. The chapter illustrates the impact of these stereotypes based on the young people's experiences, and encourages further empirical research in this area.

Chapter 3, Reacting to demoralization and investigating the experience of dignity in psychosis: reflections from an acute psychiatric ward, authored by a team led by Martino Belvederi Murri, addresses the unique challenges to epistemic justice that emerge in an acute ward, where coercion may be used. The use of coercion may engender situations that are detrimental for individual dignity and morale. One such effect is demoralization, which may increase the risk of suicide. The chapter provides an overview of the work on these topics and offers some suggestions for strategies that might improve the experience of psychiatric inpatient care.

Chapter 4, Not all diagnosis are created equal: Comparing depression and borderline personality disorder diagnoses through the lens of epistemic injustice, authored by Jay Watts, examines four aspects of epistemic injustice: objectification, moral agency, trivialization, and narrative agency. It compares personality disorder and depression, arguably the least and most popular diagnoses with patients in psychiatry. The analysis emphasises the importance of epistemic injustice as a tool in critically evaluating the usefulness of specific psychiatric diagnoses, encouraging a shift in clinical training to embrace reflective practices and restructure power dynamics in clinical encounters. 

Chapter 5, Resisting perceptions of patient untrustworthiness, authored by Eleanor Palafox-Harris, argues that a beneficial therapeutic relationship between patient and clinician requires mutual trust. In order to effectively treat someone, a clinician has to trust the patient’s reports of their symptoms but many psychiatric diagnoses are stereotypically associated with traits that indicate untrustworthiness (such as irrationality). In this chapter Palafox-Harris illustrates how psychiatric labels can signal stereotypes of untrustworthiness, reducing patients' perceived epistemic credibility.

Chapter 6, Preserving dignity and epistemic justice in palliative care for patients with serious mental health problems, with Luigi Grassi as lead author, considers the challenges faced by people with serious mental disorders who are at the end of life and promotes a person-centred approach, which can increase the sense of personal dignity and epistemic justice. Dignity Therapy can be applied in palliative care settings, offering people an opportunity to reflect upon crucial existential and relational issues and prepare their legacy.

Chapter 7, Promoting good living and social health in dementia, with Rabih Chattat as lead author, explores the notion of good living in the case of dementia and highlights the role of social health in preserving wellbeing. Discrimination impacts people with dementia in diagnosis disclosure, advance care planning, and decision making. The chapter critically examines the labelling of the behaviour of people with dementia as problematic and pathological even when it is a reaction to difficulties in communication.

Chapter 8, Ameliorating epistemic injustice with digital health technologies, authored by Elisabetta Lalumera, discusses the potential of digital phenotyping for ameliorating epistemic injustice in mental health. There is a concern that the evidence digital health technologies gather may overshadow individual experiences but, through a fictional case study, Lalumera portrays digital phenotyping as way to support shared decision-making. 

The book aims to help understand how the demands of epistemic justice relate to and complement recent research on agency in youth mental health, person-centred care, dignity therapy, stigmatising diagnoses, good living, social health, and access to digital technologies. As illustrated in the figure below, people seeking help should preserve crucial roles as agents and collaborators with valuable perspectives, multiple interests and needs, the capacity to contribute to positive change, and the capacity for shared decision making.

The mental health patient as an agent