Wednesday 27 March 2024

EPIC Poetry

On 27 February a group of poetry enthusiasts, patients, arts and health practitioners, health professionals, generally curious folk, a few students, and a dog gathered in an upstairs room of a pub in Bristol to take part in a poetry workshop. The workshop was the first step in a process which will see the creation of a musical piece for EPIC. The choral piece will be based on lyrics written by poet Jennifer Thorp which will be set to music by composer Toby Young. Its theme is epistemic injustice.



Working in groups with words and images

 

This is the second time I’ve had the good fortune to work with Jennifer and Toby, who I met via Jess Farr Cox (thank you, Jess!), who was instrumental in the creation of a previous piece, Under the surface. This composition from 2016 invited the hearer to explore breathlessness and our relationship to our breath. You can hear the piece Toby and Jennifer created for a previous research project I led, the Life of Breath, here (there’s also an interview with Toby about the creation of the piece).

The idea behind the new, EPIC choral piece is to give a voice, sound, and words to experiences of epistemic injustice, which can be bewildering and inchoate. The piece will help share the experience with a variety of audiences, inviting reflection on the nature of epistemic injustice and how to communicate it.

The piece will initially be quite short - under ten minutes - and we plan to add a few minutes to it each year of the six years of the project, based on that year's research and ideas as they develop.

So how did we start off? Jennifer, who led the workshop, first asked us to warm up with a series of writing exercises. We worked in small groups to generate random metaphors, such as 'voice is a grizzly beast.' We then wrote a list of words and descriptions evoked by several powerful images, including a painting by Edward Hopper and an illustration from Maurice Sendak.



Poetry workshop

 

Jennifer then asked us to think of examples of situations in which we experienced silence of various kind: being silenced by a mother or spouse, an awkward silence at a dinner party, the silence following bad news ... many examples were given and elaborated on.

Our next exercise was to describe a situation involving silence from the point of view of an object on the scene (a pillow, school gates, and a stone were some of the objects).

We then created lists of words evoked by a particular situation of silence of our choice which we then turned into short poems. Here is one:


It’s childish, I know.
But it feels hotly dignified.
It is a punishing, vindictive, wrathful silence.
But it leaves you cold.



Jennifer took away many pieces of paper with ink and crayon markings on them. What will become of those pieces of paper? On that in our next blog post, in which we will hear more about the creative process as Jennifer and Toby take it to the next stage.

The choral piece will be premiered at the EPIC project launch on Monday 13 May 2024, where it will be performed (as part of a social justice themed program of choral pieces) by the wonderful Bristol University Singers. Please email Charlotte Withers (charlotte.withers@bristol.ac.uk) if you'd like to attend.

Wednesday 20 March 2024

Affective injustice and borderline personality disorder

Borderline personality disorder (BPD) is a contentious and heavily stigmatized diagnosis. This is something one cannot help but become acutely aware of when navigating the healthcare system with a BPD diagnosis. We are stereotyped as attention-seeking, manipulative and intentionally antagonistic. Such stereotypes and beliefs about people with this diagnostic label inevitably influence clinical encounters. Moments after being diagnosed, a well-meaning nurse encouraged me not to disclose my diagnosis if I were ever to seek private psychotherapy. Some therapists, he noted, simply refuse to work with people diagnosed with BPD.

I am particularly concerned with how diagnostic criteria for BPD may interact with negative stereotyping in particularly harmful ways. One of the nine diagnostic criteria (of which five are required) for BPD listed in the DSM-5-TR is display of ‘Inappropriate, intense anger or difficulty controlling anger’. This criterion is notably wide and stated examples range from extreme sarcasm to recurrent physical fights. The openness of the criterion is not in itself a bad thing, it may even be necessary for clinicians to apply it to individual persons with unique and complex ways of being in the world. The danger is that such openness can increase use of stereotyping that can lead to situations wherein our anger is dismissed – from the outset – as inappropriate and pathological.

Initially, this may seem like a case of testimonial injustice – roughly, a form of epistemic injustice wherein someone’s standing as a knower and credible testifier is undermined due to negative prejudices about their identity. For example, the idea that people diagnosed with BPD are purposefully hostile could lead clinicians to make biased assessments of the legitimacy and proportionality of our anger.

The ‘problem’ with anger, however, is that it is not clear that what we are dealing with are claims to knowledge and, consequently, that prejudice-driven dismissals of anger as inappropriate or pathological always involve an epistemic wrong. Imagine a case where negative stereotypes lead clinicians to assume that (nearly) all anger experienced and expressed by someone with a BPD diagnosis is inappropriate and pathological. Even in instances where the anger may indeed be inappropriate because it involves or is based on an incorrect belief, the fact that such anger is met with an assumption of (a pathological kind of) inappropriateness seems wrong. It is not clear to me that this wrong is epistemic.


Mit liv (My life in Danish) by Leif Hakon Olesen, from a collection (Livsbilleder, 1995) of painting and poetry made by service users at the social institution Basen that operated in the Danish town of Aarhus in the 1990s.


Instead, it may be a distinctly affective wrong, a form of affective injustice. Affective injustice has been defined as the phenomenon whereby people are wronged as feeling or affective beings. It may, for example, occur when racialised people’s anti-racist anger is dismissed as counterproductive to constructive debate, in turn, putting them in a normative conflict between their apt emotional responses to racial injustice and desire to better their situation.

It may also occur, I would argue, when the affective experiences of people diagnosed with BPD are viewed through a lens of pathology and negative stereotypes to a degree that makes it incredibly hard (if not impossible) to have our anger be seen as genuine and sometimes appropriate reactions to past trauma, neglect, discrimination and apathy.


Astrid Fly Oredsson is a self-described PhD drop-out with formal training in philosophy and lived experience of navigating various healthcare systems with a BPD diagnosis. 

Her research interests lie in topics such as psychiatric diagnoses, emotional experience and epistemic and affective injustice.


Wednesday 13 March 2024

Towards epistemic justice in the biomedical paradigm

Epistemic injustice occurs when credibility is inappropriately attributed due to prejudices. It could be described as a failure concept (by analogy with “success” verbs such as knowing, finishing, and achieving). 

There are numerous ways to fail at the same task (for example, multiple ways to be late for work on a rainy morning), as well as numerous ways to succeed. Thus, there are several ways in which medicine and healthcare fail to take the views of individuals in care seriously. Many philosophical and, increasingly, medical works demonstrate cases of epistemic injustice.

I am interested in the ways to succeed in giving appropriate credibility - on how epistemic justice might be realised in specific contexts of medical research or care. This is connected in part to my work on the concept of trust in healthcare institutions (with reference to vaccination hesitancy prior to the pandemic). I believe that epistemic justice can significantly improve this trust relationship (this is currently just an idea that I hope to develop soon). 

Partly, I am interested in focusing on ways to achieve epistemic justice rather than failures because, for several years, I have collaborated with doctors and people working in the healthcare system or in research, and from the inside, I see more and more willingness to accept different types of evidence on illness and people's health. Perhaps it's also because I'm an optimist.

Moving on to less abstract topics. In the EPIC project, I will be working with psychologist Rabih Chattat at the University of Bologna, analysing situations of epistemic injustice in dementia patients using a qualitative research methodology. We want to examine whether and how (in specific ways) healthcare providers fail to give credibility to people with dementia, and then suggest feasible solutions, or epistemic justice strategies.

At the same time, I am lucky to be working on another two interdisciplinary medical research projects. One is the DARE-Digital lifelong prevention project, which aims to provide support and a regulatory framework for e-health prevention technologies being developed in Italy, such as AI-based models for clinicians to understand a person's risk of a specific disease, as well as apps for patients to monitor their personal risk, for example the risk of falls for an elderly person with fragile bones. 




We know that these technologies pose a considerable risk of epistemic injustice. However, I feel it is worthwhile exploring how apps or AI-based systems might serve as strategies for achieving epistemic justice. How? In short, my fall-risk app can assist me in explaining to the doctor and family members why I feel unsafe while walking; the data it displays will can help validate my experience in addition to translating it into "medical speak." It is undoubtedly not the subjective experience that is directly taken at face value, but this translation. However, it could be a step forward towards epistemic justice. This will be discussed in a draft paper I am now working on. 

Last but not least, I am working on an EU Horizon Cancer Mission project called PREMIO COLLAB, which stands for personalised response monitoring in oncology: co-creating clinical trials in advanced breast cancer. This is a multicenter trial to determine which imaging modality is best for monitoring advanced breast cancer. What is the relevance of epistemic injustice in this context? While there has been much discussion about involving patients in treatment decisions, patients are almost never included in diagnostic decisions such as how many tests to perform, how frequently, and which ones. 

Diagnostics is in the hands of doctors. We will carry out qualitative study on patient preferences related to this in PREMIO COLLAB. We plan to convert our results into helpful recommendations for medical professionals regarding how to engage in a discussion regarding diagnostic options. These, in my opinion, can also be strategies for succeeding or achieving epistemic fairness from within the biomedical paradigm. 


Elisabetta Lalumera

Elisabetta Lalumera works at the Department for Life Quality Studies, University of Bologna, Italy. 

She is a project partner for EPIC, working on the Discounting Dementia case study.

Friday 8 March 2024

The Women of EPIC

We asked the women of EPIC to tell us what it means for them to be part of the project and we share their thoughts with you on International Women's Day.



Havi Carel (EPIC Principal Investigator)


Havi Carel

"Being part of EPIC is an enormous step for me, both academically and as a feminist. When I started my career, the biggest challenges came from being a young woman in academia, whose contributions often felt ignored and whose area of work was considered 'soft'.
Combined with not having English as my first language and being a newly-arrived immigrant from a cultural minority, I was often at a disadvantage in ways related to epistemic injustice. I think things have improved in places over the past decade but there is still so much entrenched sexism everywhere, including in academia.
In particular, not being heard and not being taken seriously are still forms of epistemic belittling that women encounter daily as students and as academics. I would urge women starting out in academia to find sources of advice (e.g. a woman mentor) and create networks of support. Happy IWD!"

 

Learn more about Havi's research:


Rose McCabe (EPIC Project partner)


Rose McCabe

 

"I’m so enjoying working with philosophers and young people - including lots of inspiring young women - on the EPIC project as it provides a completely different lens to think about so many aspects of communication in mental health and mental health care. 
I never thought I would be a Professor and it has been a juggle with four children. For this reason, I really enjoy mentoring younger female colleagues and helping them to navigate their professional journeys."

 

Learn more about Rose's research


Jude Williams (EPIC Project administrator)


Jude Williams in the Choir with No Name

I was immediately drawn to the project as my own experiences of healthcare epistemic injustices, and those of my family and friends flew through my mind as I read through the project’s aims and ambitions.  To bring this to the forefront of academic research, fully involving everyday people with lived experience and promoting change in how we can address such injustice is crucial and essential for all of our wellbeing. 
In addition to working for EPIC, I teach yoga to older women and menopausal women, and I’m a volunteer with The Choir With No Name Birmingham, a choir for people affected by homelessness and marginalisation. Epistemic injustice is rife in our choir, and although it can feel like you have no name when you are homeless, through community, friendship, eating a hot meal together and belting out some great tunes we enable people to have a voice – and a fabulous one at that!

 

 Learn about The Choir with No Name:


Elisabetta Lalumera (EPIC Project partner)


Elisabetta Lalumera

"I work at the University of Bologna, in Italy, and for about ten years now I have been working in the philosophy of medicine and psychiatry. I am happy with my work and I know I am very privileged in many aspects. However, I am a female philosopher in a country where female academics are a minority, especially philosophers. Furthermore, I am a woman whose appearance is far from the stereotype of the academic dressed soberly, with a perpetually serious, grave, or authoritative expression. Lastly, I am an Italian who must predominantly speak and write in English. 
These conditions have been and are influential in my career and my life. The default decrease in credibility is a phenomenon that I have experienced very frequently. The concept of epistemic injustice is a philosophical tool that allows highlighting conditions like these - among others. In general, I believe that concepts can empower us, enable us to discuss aspects of reality, and ultimately change them if we need to, and if we are able to engage in a collaborative amioration projects. And creating and discussing concepts is the work of philosophers! So let's not forget how important out job is."

Learn more about Elisabetta's research:

Eleanor Byrne (EPIC Research fellow)


Eleanor Byrne


"I'm delighted to be part of the EPIC team working closely with friendly, curious and critical-minded women. Unfortunately, occasionally one witnesses anxieties about how the increasing presence of women in philosophy risks making the discipline 'soft'. 
We are evidence that philosophy can be compassionate and morally-engaged without compromising quality and rigour."


Learn more about Eleanor's research:


Charlotte Withers (EPIC project manager)


Charlotte Withers

"I am delighted to play a supporting role on the EPIC project. Having studied and worked in the Philosophy department at Bristol for over 10 years, it’s hugely encouraging to now be part of a project that places understanding epistemic injustice at its core. Alongside my EPIC project manager work I am studying for a PGCE in primary education. The EPIC work on creating EI resources for children is really exciting and I look forward to sharing this with my own pupils.

I have been lucky, throughout my studies and University career, to be mentored by strong women. As a mother of three and teacher, I will strive to share the guidance and kindness shown to me with the children I care for. Wishing you all a happy International Women’s Day!"


Sheelagh McGuinness (EPIC Co-Investigator)


Sheelagh McGuiness

Epistemic injustice is important as a framework for understanding how patients are perceived and how they feel they are perceived. It provides a lens through which we can understand and gain insight into experiences that have been overlooked and marginalised. 

Hopefully this will lead to pathways and strategies through which we can ameliorate these injustices. 


Learn more about Sheelagh's research


Lisa Bortolotti (EPIC Co-Investigator) 


Lisa Bortolotti

"At various stages in our lives our agency is questioned and we lose the power to make decisions about our own lives. When we are kids we appear not to have gained enough agency yet. And when we become patients we seem to have lost some of our original agency. 
Women, Black people, people who are perceived as different, and people from a disadvantaged background are often told that they will never make a difference and their perspectives are not valued. 
For me EPIC is about subverting the idea that age, health, gender, skin colour, sexual orientation, mental health, or socio-economic status, by themselves or in combination with other aspects of a person's identity, are ever sufficient reasons to stop treating someone as an agent with a valuable perspective on the world and with the power to contribute to positive change."

Learn more about Lisa's research:



Kathleen Murphy-Hollies (EPIC Research Fellow)


Kathleen Murphy-Hollies

"I am so thrilled to be working on such an interesting and important topic, and excited for what the coming years will bring. Working on project EPIC enables me to continue studying the ways in which social exchanges can go well, or go badly, and what that means for how people understand themselves. 
I am also so grateful to be working with the many other wonderful women in EPIC; I think that being within these groups of women-supporting-women is imperative, and it’s joyful to see more and more of them prosper in philosophy."


Learn more about Kathleen's research:


Wednesday 6 March 2024

Affective and Mnemonic Injustice

This is a report on the workshop held online on 30-31 January 2024, entitled: Affective and Mnemonic Injustice. Thanks to Felipe Carvalho, Nathália de Ávila and Em Walsh for their detailed and interesting report.


Workshop poster


One of us – Felipe Carvalho – is a philosopher of emotion with a keen interest in its political aspects, while the other two – Nathália de Ávila and Em Walsh – are philosophers of memory whose works address specially negative-valenced emotions in psychopathology. So, when the idea came of organizing a Zoom workshop together, we thought it would be a great idea to explore these two topics in combination. After all, there are obvious interconnections between them – provoking a traumatic experience upon another person, for example, is a kind of injustice that has both an affective and a mnemonic component. We thus hoped that the talks in this workshop, and the discussion that would follow them, could bring out these and other interconnections

Marina Trakas (CONICET, Argentina) opened the workshop discussing instances where fear generalization results in harm to others and represents forms of injustice, particularly through mnemonic capacities. Mnemonic injustice refers to the phenomenon wherein inequality and discrimination arise through how stereotypes influence the way we remember. In an effort to provide a tangible illustration rooted in real-life experience, she exemplified how the academic accomplishments of individuals belonging to minority groups, such as a woman or a Black candidate, may be misrepresented or undervalued by members of the hiring committee due to the impact of stereotypes on memory. 

This could result in their achievements and qualities not being duly acknowledged (epistemic harms) and consequently, facing difficulties in securing employment (practical harms), leading to feelings of stress and anxiety (affective harms). Ultimately, this could perpetuate the development of inaccurate or distorted beliefs regarding their own academic capabilities and talents (further epistemic harms). Marina claimed that on a personal level, by embracing strategies encouraged by society, mnemonic injustice stems from various memory biases that can be tackled through fostering mnemonic humility - an expression proposed by Vilius Dranseika that works as a sort of epistemic virtue that relies on metamemory (i.e. knowledge about how our memory systems work and their inherent processes). This relation will be the focus of her future works on the matter. For now, her aim was to show how mnemonic injustice sheds light on a previously unnoticed aspect of social epistemology, particularly evident in instances of fear generalization.

The next speaker was Francisco Gallegos (Wake Forest, USA), a Mexican philosopher who introduced concepts from Mexican existentialism to discuss affective injustice and authenticity—a philosophical discourse with a clear Heideggerian background. In his profound and captivating presentation, which adeptly referenced several interdisciplinary works by women and Latin American thinkers as if it were commonplace rather than exceptional, Gallegos analyzed the notion of "Zozobra." This concept refers to the inability to feel at home in the world in an anxious and oscillating manner that reflects cynicism, nostalgia, apocalyptic thinking, and inaction simultaneously. 

In a post-pandemic context that coincides with wars, genocide, and a collapsing economy and climate simultaneously, there is no need to assert the audience’s collective identification with an emotion of this kind. In philosophical debates, while some Mexican existentialists, like Jorge Portilla, argue that zozobra arises from social disintegration and societal dysfunctions, others like Emilio Uranga and Gloria Anzaldúa view the emotion as inherent to the human condition, capable of being utilized as a source of authenticity with the aim of reversing it. Gallegos, we understand, combines both approaches. By introducing the concept of "affective goods'' (i.e., all that contributes to an excellent emotional life), he identified which ones are fundamental and their conditions of possibility (i.e., their inherent affective freedoms, affective resources, affective opportunities, and forms of affective recognition) in order to define affective injustice as the morally objectionable deprivation of those affective goods. 

He then questioned how one can pursue authenticity (as something more individually-oriented) within contexts over which we have little power (as they adhere to pre-established rules beyond our control), such as restrictive work settings that censor personal expression, the inability to pursue personal projects due to excessive work demands, or being subjected to punishment for affirming one’s identity, as we daily see in the experience of the LGBTQIA+ community. The response, in turn, emphasized the roles of transparency, non-conformity, integrity, and growth. By concluding the presentation with more questions than definitive answers, Gallegos underscored the importance of exploring which affective and mnemonic environments contribute to emotional integrity, thereby reducing injustices.



People sharing ideas in an online meeting


The second day of the workshop began with Joel Krueger (Exeter, UK), a philosopher who has already explored, in previous works, the various harms and injustices faced by neuroatypical individuals (for example, here, here and here). This time, however, these harms were framed within the concept of affective injustice. In particular, Joel argued that significant theoretical gain could be achieved by framing affective injustice within an ecological psychology framework, in order to highlight how features of the built environment can be responsible for affective injustices. 

In order to argue for this claim, Joel focused on two cases studies: hostile architecture, such as spikes installed on flat surfaces to prevent individuals from sitting or lying down, dividers on benches to discourage lying down or stretching out, etc., as well as masking practices in autism, which refer to the adoption of behavior and styles of expression in order to conceal certain autistic traits, as a compensatory strategy that help autistic individuals navigate the social world. Both of these cases, Joel argued, deprive bodies of access to subsidiary affective goods (a notion Joel borrows from Francisco Gallegos), such as affective freedoms, resources and recognition, making people feel affectively powerless (the feeling that a significant portion of one’s life is manipulated by others with greater affective power). To put it in the vocabulary of ecological psychology, their affordance spaces are designed in ways that weaken their spatial agency and thus diminish their ability to feel at home in the world. 

Finally, the workshop ended with Katherine Puddifoot. Katherine is a philosopher at Durham University, whose interests encompass mental health, epistemology (implicit biases; memory errors, etc) and trauma. In her talk, she explored instances of mnemonic injustice, where memory processes contribute to unfair treatment of others, as well as situations where misunderstandings about memory result in injustice. This presupposition is an outcome of her recent collaboration with Marina Trakas, specifically the paper about fear generalization, which is listed below. 

This joint work led her to now advocate for a perspective on memory rooted in social justice. Those who embrace this viewpoint will judge a memory account acceptable only if it aligns with the principles of equity: arguing for a social justice perspective on memory requires a significant shift away from approaches that view memory as a natural kind. Nonetheless, she claims that adopting this stance is warranted due to the crucial role an accurate understanding of memory plays in promoting fairness. In order to clarify her argument, Katherine carefully examined different concepts of memory within the contemporary anglophone literature on philosophy of cognitive sciences, such as Markus Werning’s trace minimalism (2020).

Wonderful questions and discussions followed all the talks, and we wished we had more time to explore all the suggestions and interconnections that appeared in the Q & A. We thus hope that this blog post will foster the debate on affective and mnemonic injustice. We believe that philosophical accounts of memory and emotion harbor profound political implications, and that contrary to being peripheral, the political dimensions of memory and affectivity occupy a central position in inquiries concerning the mechanisms, objectives, and societal implications of memory and emotional processes. 


Workshop speakers: Katherine, Francisco, Joel, and Marina 


If you’d like to know more about these topics, we encourage you to get in touch with the organizers and/or the speakers, and check some of the papers that were discussed in the workshop, which are listed below: