Wednesday 15 May 2024

Project launch for EPIC!

On Monday 13th May, we celebrated the launch of Project EPIC in Bristol. The launch was held at a beautiful and unique historic venue in Bristol, The Mount Without. We welcomed colleagues from the Universities of Bristol, Nottingham, and Birmingham, as well as representatives from our funder, Wellcome, friends and colleagues from other Universities, doctors, local art therapists and more. 

The evening began with an introductory address from the Principal Investigator, Professor Havi Carel, who introduced the topic of epistemic injustice in healthcare and why it matters. This was followed by short, three-minute snap-shot talks from each of the project's researchers summarising what interests them about the project. 

We heard from Lisa Bortolotti, Matthew Broome, Ian James Kidd, Michael Larkin, Michael Bresalier, Ellie Byrne, Fred Cooper, Dan Degerman and Kathleen Murphy-Hollies on a range of topics, including how epistemic injustice in healthcare relates to intersectionality and wider socio-political structures, phenomenology, emotional dysregulation, self-understanding, loneliness, and silence.


The EPIC project team 

The first part of the evening was closed by the Bristol University Singers, conducted by Elinor Cooper. The choir first sang an excerpt from ‘under the surface’ composed 2015, called ‘We measure time in breath’, followed by 'Bawo Thixo Somandla - Sidumo Nyamezele’ - a protest song widely sung during the apartheid period - and ‘We are’ by Ysaye M Barnwell.

The final of four pieces was composed by Toby Young, with lyrics by Jennifer Thorp. It was commissioned specially for Project EPIC. An excerpt as follows:

    What I keep is vigil

    What I pray is mute

    What I breathe is secret

    What I know is brute

The musical composition will grow as the project progresses, and we can't wait to see what themes emerge from the research that we'll do together.


The University Singers

The remainder of the event was spent networking and mingling with our guests. Bringing together researchers, healthcare practitioners, patients, and their advocates, clearly demonstrated the scope and the potential of the project to better understand, and ameliorate, epistemic injustices in healthcare. 

Recordings of our talks and the musical composition will be made available in due course. 

Watch this space!

Wednesday 8 May 2024

Automated epistemic objectification in healthcare

The provision of healthcare is an intrinsically cooperative enterprise in which patients’ active engagement is crucial. It is paramount to recognize the value of patients' epistemic offerings in medical encounters and that their testimony is central to providing healthcare professionals epistemic access to their health state. These are fundamental preconditions to finding the most suitable course of medical action tailored to patients' needs in their singularity. 

However, the ever-growing body of literature tackling epistemic injustice in medicine and healthcare shows that identity prejudices often diminish patients’ credibility, thus hampering their possibility to play their role as epistemic subjects in medical encounters. Often, this leads to misrecognition of patients' epistemic status by, among others, hastily dismissing their testimony as irrelevant, thus leading to epistemic and practical harm. These situations are already highly problematic in healthcare encounters among human patients and physicians.

The introduction of artificial intelligence-based systems, such as machine learning (ML), in medical practice shows that medical care is no longer an exclusively human domain. So, what happens when an ML system, as an allegedly objective epistemic authority and powerful knowledge-generating entity, enters the picture by considerably influencing central medical procedures? As we argue in a recently published paper, we must be wary of ML systems' roles in crucial medical practices, such as providing treatment recommendations and diagnoses. More precisely, we advance the claim that ML systems can epistemically objectify patients in subtle but potentially extremely harmful ways that must be treated in their own right. In fact, these harms are not to be subsumed under other ethical concerns currently receiving extensive attention in the AI Ethics debate. 


Robot typing

Our paper discusses the hypothetical case of an ML system generating a treatment recommendation that goes against a patient's values. In similar situations, the patient is confronted with an unsuitable course of action. We argue that the patient risks being epistemically objectified if the system cannot pick up on their values and produce a new recommendation aligned with their expectations. This is the case because, crucially, when the patient needs to actively provide a piece of information relevant to further course of action, they are prevented from effectively doing so due to the system's setup. The bottom line is that the patient's status in this knowledge-producing endeavor may be degraded to merely being an object of medical action. 

Against these considerations, one could argue that a human physician could simply neutralize the recommendation produced by ML if it goes against the patient's values. However, we see this move as too simplistic for two main reasons. First, physicians may be epistemically dependent on an ML system and de facto unable to override it. Even though this is a surely undesirable scenario, it is recognizable in systems currently deployed. Second, disregarding ML systems' recommendations does not guarantee that physicians can readily find a further, more appropriate course of action. Rather, they might benefit from an ML system supporting their decision-making.

Overall, our general plea in the paper is thus to show the need for a flexible ML epistemology that can incorporate and adapt to newly acquired and ethically relevant information that patients can actively provide. This is key to avoid objectifying patients in morally salient medical interactions. 


Dr. Giorgia Pozzi is a postdoctoral researcher at Delft University of Technology (The Netherlands), working on the intersection between the ethics and epistemology of artificial intelligence (AI) in medicine and healthcare. She has a particular interest in tackling forms of epistemic injustice emerging due to the integration of AI systems in medical practice.

Wednesday 1 May 2024

Stereotypes about young people who hear voices

Negative stereotypes associated with people who report unusual experiences and beliefs cause lasting harm and often undermine agency. In a series of workshops with the young people of the Voice Collective, facilitated by Fiona Malpass (Mind in Camden) and designed by Lisa Bortolotti and Kathleen Murphy-Hollis, we discussed the challenges that hearing voices poses for young people, at home, at school, and in healthcare settings.

The result of our conversations was a script created by the young people who participated in the workshops, where they described three forms of negative stereotyping that cause harm: 

  • perceived dangerousness, leading to the thought that the young person poses a threat; 
  • perceived lack of capacity or incompetence, leading to the thought that the young people cannot achieve anything valuable or challenging; 
  • perceived difference or weakness, leading to social exclusion.
The script was turned into an animated video, produced by Squideo (click below to watch).



Snake or dangerousness


Snake


Perceived dangerousness is represented by Snake, who does not really pose a threat to humans but is feared and kept at a distance. Contrary to popular belief, most snakes are neither venomous nor dangerous. Snakes defend themselves if someone disturbs or attacks them but are not aggressive towards humans. Yet, many people make assumptions about their being dangerous. So, Snake in the video is right that his bad reputation is undeserved.


Butterfly or incompetence



Butterfly


Perceived lack of capacity is represented by Butterfly. Although she is an active pollinator contributing to the life of the garden, Bee teases her and suggests that she is lazy and useless, based on her past as a caterpillar, when she was seen eating all day long. Seeing a chewed leaf might make us think that caterpillars are good for nothing but destroying plants. However, caterpillars are actually very important to their environment even before they become pollinators. They prevent vegetation from growing too quickly and depleting nutrients in the soil. So Bee's attitude towards caterpillars and butterflies in our video is unjustified.


Wolf or exclusion



Wolf


Perceived difference or weakness is represented by Wolf. Wolf got an injury and because of that he was left behind by his pack. The other wolves assumed he would be a burden, unable to keep up and hunt for himself. But there is no reason that his small, temporary injury would have made his contributions to the pack less valuable in the long term. He would have probably needed some support until the injury was healed, and then he would have been in a position to run and hunt as fast as the other members of the pack.


A safe space


Snake, Wolf and Butterfly in the clearing


Being treated as dangerous for no good reason, being considered as a burden and nothing else, and being excluded by shared decision-making, are all harmful (and sadly common) experiences for young people who hear voices. Young people struggling with their mental health have a lot to contribute and with some support they can continue to pursue the projects that are important to them.

In the video, Snake, Wolf and Butterfly meet in the clearing to share their experiences and support each other. What happens in the clearing, sharing experiences in an environment that is safe and non-judgemental, is what happens in the Voice Collective. Young people who hear voices and have other unusual experiences or beliefs come together and connect with people who are in a similar situation. 

The video is an invitation to go beyond the stereotypes and see the person, not the label. To learn more about myths and truths about hearing voices, visit The Voice Collective website.




You find The Wolf, the Snake and the Butterfly and other animated videos introducing philosophical issues in The Philosophy Garden, a virtual philosophy museum gathering and producing resources for young people, educators, and the general public. 


The Philosophy Garden is a project run by EPIC co-investigator Lisa Bortolotti, with the collaboration of Kathleen Murphy-Hollies, Anna Ichino, and Fer Zambra.

Wednesday 24 April 2024

Epistemic Microaggressions in Healthcare

In its relatively short history, the growing literature on epistemic injustice in healthcare has come a long way in highlighting the distinctly epistemic dimensions of medical encounters that can lead to a variety of injustices for patients. Such injustices are often the result of differences in relationships of institutional, professional, and social power (Kidd and Carel 2017, Freeman and Stewart 2024, Stewart and Freeman, 2022). 

This literature is mostly focused on how phenomena such as testimonial injustice and hermeneutical injustice render patients epistemically vulnerable. Additionally, it has helped to illuminate some of the ways in which patients from marginalized groups have their epistemic agency constrained, undermined, or ignored as they attempt to make claims about their bodies, identities, or health status to healthcare professionals. However, this literature has only recently started to attend to some of the more subtle, covert, and insidious mechanisms of epistemic dismissal.
 
In our recently published book, Microaggressions in Medicine, we engage with some of these seemingly subtler forms of epistemic (and other) types of injustice and harm in medical contexts. Let’s zoom out to mention the overall aims and goals of the book before zooming back in to focus on the epistemic dimensions of these injustices.

The two main theoretical aims of Microaggressions in Medicine are to reconceptualize how microaggressions have been understood by psychologists and philosophers and to introduce a new conceptualization of microaggressions that we call a harm-based account. 

Our harm-based account categorizes microaggressions according to the kind of harm that results for those who experience them. As such, we propose and argue for the following three kinds of microaggressions: epistemic microaggressions that result in epistemic harm, emotional microaggressions that result in emotional harm, and self-identity microaggressions that result in harms to one’s sense of self.


Microaggressions in Medicine (2024)


There are three applied aims of the book. 
  • Using first-personal narratives, case studies, and testimonies of patients who are members of marginalized groups, we develop this harm-based account within medical contexts. 
  • Analyzing these case studies, we illuminate the serious and enduring harms of microaggressions and argue that they can ultimately lead to delaying or avoiding medical care, damaged trust relations with healthcare professionals, and ultimately worse health outcomes for patients who experience them. 
  • We introduce practical tools and strategies to help healthcare professionals reduce microaggressions in their practices and institutions, thereby diminishing harm caused to patients.

In what follows, and drawing on chapter 4 of the book, we focus on epistemic microaggressions, epistemic harm, and discuss why attending to epistemic microaggressions is an important part of the larger picture of epistemic injustice in healthcare.

In medical contexts, epistemic microaggressions are intentional or unintentional verbal or gestural slights made by healthcare professionals that dismiss, ignore, or otherwise fail to recognize claims that patients make about their bodies or health. Epistemic microaggressions result in epistemic harm to recipients (here, patients), namely, harm to them in their capacity as knowers. 

One example of an epistemic microaggression that we develop in the book is the story of what happened to the famous sociologist, professor, writer, and MacArthur “genius” award winner, Tressie McMillan Cottom. Despite her social standing and countless intellectual and academic achievements, as a self-described fat, Black (and at the time, pregnant) woman, Cottom knew that given her identity, she would face an array of discriminations. For this reason, she carefully chose her physicians. Or so she thought.

When she was four months pregnant, bleeding and experiencing acute pain, Cottom knew that something was terribly wrong. Yet when she and her then husband arrived at her doctor’s office, instead of being seen immediately or being sent directly to the emergency department, she was told to sit patiently in the waiting room. When she finally got to see her doctor, he looked at her and quickly said that she was probably just too fat and that for “women like her,” spotting was typical at this stage of pregnancy. She was sent home.

When, later that night, her pain escalated, the on-call nurse assured her over the phone that because the pain was in her bowel and not her lower back, that it was probably constipation and that she should try to go to the bathroom. After three days of such pain and no sleep, Cottom went to the hospital, where she was told that she’d probably just eaten something that was “bad” for her. 

After insisting that she get an ultrasound, it showed the fetus, in addition to two large tumors. Upon seeing this, the nurse scolded Cottom: “You should have said something” (Cottom 2019, 84). Soon thereafter, Cottom went into early labor. She gave birth to her daughter, who died soon after she was born (ibid., 85). While making plans for how to handle her daughter’s remains, another nurse said: “Just so you know, there was nothing we could have done since you never told us that you were in labor” (ibid.).

There are countless microaggressive harms that Cottom experienced. It’s important to underscore however, that the result of those microaggressions was nothing micro. Our analysis focuses on how racialized and gendered epistemic microaggressions combine in ways that are unique to Black women (what we call the misogynoir of microaggressions).

In this case, it was clear that Cottom knew that there was something wrong, tried to convey this knowledge to her healthcare team, and continued to be viewed as lacking credibility with regards to her knowledge of her body. As a result of the entrenched biases and stereotypes about Black women, Cottom experienced a panoply of racialized gendered epistemic microaggressions. 

As a pregnant Black woman who was bleeding and in pain, her bleeding was attributed to her fatness. Then, her pain in her bowel was dismissed as being the consequences of something “bad” that she’d eaten, where “bad” has racist undertones about the kinds of food that Black people eat. Finally, after the death of her newborn daughter, she was blamed for not having spoken up sooner, with the implication that the death was in part her fault and could have been prevented had she spoken up.

Cottom is powerless relative to the healthcare professionals.

Her knowledge of her body is ignored.

Repeatedly, healthcare professionals assumed they knew better.

On account of her race, gender, and body size, Cottom suffered the epistemic harm of not being recognized as a credible knower, the practical harms of severe physical pain, the death of her daughter, as well as the enduring trauma of the whole experience.

These consequences are macro and tragic. But we are most concerned with the epistemic racialized gendered microaggressions that contributed to them. Cottom’s credibility as a knower was denied due to her race, gender, and body size and as a result, her knowledge claims were ignored or dismissed.

The racialized gendered epistemic microaggressions that Cottom experienced are reflections of imbalances in epistemic and other sorts of social power that themselves mirror broader patterns at play both within and beyond healthcare contexts. Healthcare workers belong to an elite professional class. They’re assumed to have epistemic authority within and beyond that context. They often exert epistemic power over their patients by blocking them from making meaningful contributions to clinical exchanges. This epistemic situation both reflects and reifies assumptions about power in the epistemic domain. For example, it makes clear who creates, controls, and deploys knowledge and who doesn’t; who is “rational” or “objective” and who isn’t (cf. Code 1991).

The epistemic microaggressions on which we have focused, combined with more macro and explicit stereotypes and assumptions about Black women, result in epistemic harms to patients: they’re denied the full status of knower, which is central to human dignity and value (Fricker 2007; Pohlhaus Jr. 2017; Dotson 2011). 

Because the epistemic contributions of patients who are members of marginalized groups are routinely blocked, over time this can result in patients coming to doubt their own epistemic capacities, especially as microaggressions add up and their harms accumulate (Evans and Mallon 2020). As we saw and as we develop further in our book, epistemic microaggressions can also lead to harmful health and other consequences.

As Cottom’s case makes clear, epistemic microaggressions are harmful to the epistemic status and agency of marginalized patients. A complete understanding of epistemic justice and injustice in healthcare and the myriad ways they manifest must include attention to the subtle epistemic dismissals and indignities that epistemic microaggressions reflect.



Heather Stewart is Assistant Professor of
Philosophy at Oklahoma State University.
Lauren Freeman is a Professor of 
Philosophy at University of Louisville.

Wednesday 17 April 2024

Female Sterilization and Epistemic Injustice

Hysterectomies, involving the removal of fallopian tubes, ovaries, or the cervix, are among some of the most common operations performed in the US and the UK. Often requested as a way of minimizing the pain associated with endometriosis, hysterectomies can also be lifesaving for women with cancer.

Recently, there has been a wave of op-eds and public accusations against medical professionals who refuse to perform these surgeries on young women, who are suffering from painful or even life-threatening conditions. 

These refusals are often justified by the concern that these young women might change their minds about having children, that their future husbands might be cheated out of parenthood or, in the case of non-binary patients, that their sexual identity might change. 

So far, these hysterectomy refusals have been criticized as denials of bodily autonomy and reproductive freedom. Yet, it is difficult to neglect that, in these interactions, some epistemic injustices might also be at play.


Uterus 

For one, the young women might be victims of testimonial injustice, which, according to Miranda Fricker, involves a speaker receiving an unfair deficit of credibility from a hearer owing to prejudice on the hearer's part. In this case, the patients’ assertions that they have understood and accepted all implications of such an operation (especially regarding the ability to procreate), are being dismissed in a way that amounts to an identity-prejudicial credibility deficit. 

Importantly, the medical professionals, deny credibility to patients based on an intersectional prejudice against young women, who are seen as immature, confused, or plainly mistaken about their reproductive decisions. They are not only denied epistemic agency, but othered, as they are viewed solely through the lens of patriarchal norms.

In addition to testimonial injustice, one might argue that young women who are denied hysterectomies also suffer from hermeneutical marginalization, wherein significant parts of lived social experience are obscured from understanding because of prejudices in collective resources for social interpretation. Historically, women, especially younger women, have been denied equal hermeneutical participation, and as a result, their lived experience of postpartum depression, sexual harassment and domestic abuse have long been obscured. 

In the case of hysterectomy denials, experiences of gynecological illness and authentic desires to remain childfree fail to be properly interpreted by the medical establishment, which functions here as a reinforcer of dominant norms linking a woman’s value to her ability to reproduce. Furthermore, these cases also indicate a compounded epistemic injustice, testimonial obfuscation, where an identity-prejudicial credibility evaluation an experience to remain unintelligible to the hermeneutically marginalized speaker. 

Thus, young women suffer a double epistemic harm – their experiences are obscured not only within the dominant discourse but also to themselves, in ways that distorts the construction of their selfhood. This explains why the denial of hysterectomies can make women doubt their own minds and desires and force them into submission to the dominant norms, regardless of the painful or life-threatening conditions they might endure.

It is my hope that considering these injustices will renew calls for embedding epistemic virtues within the medical establishment.

 


Dr Catalina Carpan is a Teaching Fellow in Political Theory at the University of Warwick. Her research explores epistemic injustice in relation to ideology and power, to show how its victims are disciplined and denied republican freedom.

Wednesday 10 April 2024

Epistemic Injustice in Dementia

One of the most common mistakes people make when they hear the word “dementia” is to assume that it is the same for everyone. They assume that problems with memory are always the most prevalent symptom, that dementia is synonymous with “Alzheimer’s disease” or that it is not possible to live a good life with such an illness. 

All of these are contested; the first two by various informative webpages (e.g., Alzheimer’s Association), and the third by people with dementia themselves in the multitude of first-hand accounts I have uncovered during my research in which they readily voice their experiences of “living well” in spite of their symptoms (e.g., Mitchell, 2018, Bute, 2018).

Arguably the most harmful assumption about people with dementia is that “the impairment of cognitive function is severe and global; that the person has or will rapidly and inevitably become a ‘vegetable’.” (Crichton, Carel & Kidd, 2017:69). Although the progression of impairment is, to some extent, inevitable (given that there is no cure), cognitive decline does not occur in the same way or at the same pace for everyone. 

Furthermore, it is important, I feel, to note the effects of the language used. People with dementia have been referred to as “vegetables”, “shells”, and even “zombies” (Behuniak, 2011, Schweda and Jongsma, 2022). This kind of downgrading of their identity from a person to a “zombie” only perpetuates the stigma that a person with dementia is “crackers” (Langdon,et al 2007:994) and therefore not worth listening or speaking to.

An icon of two adults listening and talking to each other

The notion that a person with dementia is not worth conversing with is aptly referred to by Young et al (2019) as “pre-emptive testimonial injustice”. Testimonial injustice (TI) is a type of epistemic injustice in which a speaker is not given the credibility they deserve by a hearer, and so they are “wronged specifically in their capacity as a knower” (Fricker, 2007:1). Pre-emptive TI involves the hearer already assuming that the speaker is an unreliable testifier before they have even spoken. A clear example in which this is exemplified can be seen in a study by Larsson et al in which people with dementia were interviewed: 

“if you tell colleagues (about having dementia) then they change….they will put a mark (on) your forehead… dementia that’s no point… no point in telling him… that’s too complicated… he will never get it… or a joke or something funny… there’s no point… he won’t get it anyway… and… it’s not true… because you will” (Larsson et al, 2018:4). 

“Bob” (in a similar study) also expresses that his live-in carer frequently warns people that:

it’s no good discussing it with him (Bob) because he wouldn’t know the first thing about it” (Langdon et al, 2007:996). 

In both of these examples, the person with dementia is clearly a victim of pre-emptive TI. It has unjustifiably been assumed that the person with dementia “won’t get it” and that they are therefore not worth engaging in communication with.

The stereotype above discussed by Crichton, Carel & Kidd is arguably doing a lot of the heavy-lifting in pre-emptive TI. Not everyone with dementia has “severe and global” cognitive impairment or is incapable of understanding. This is yet another instance of the harm that negative stereotypes can cause in testimonial exchanges and to epistemic agents (Fricker, 2007). 

In the words of the late Wendy Mitchell: “Dementia has to start somewhere…It doesn’t always mean the end stages, and I’m just an example of someone at the start of the journey” (Mitchell, 2018:179). We should bear Mitchell’s words in mind before we hesitate to speak to or listen to someone because they have dementia.


Sarah Wood

Sarah Wood is a PhD researcher in Philosophy at the University of York. Her research aims to provide a better understanding of the subjective experience of dementia by drawing upon ideas in the phenomenological tradition.



Wednesday 3 April 2024

Will medical AI apps help us to achieve healthcare justice?

AI-powered healthcare apps promise to solve current problems, offering more efficient, unbiased and accurate care to users. According to these promises, AI Apps can diagnose mental disorders, tell patients if their moles are cancerous, and offer a more effective ear for disclosure since some patients report feeling more comfortable sharing their experiences with AI rather than with their clinician. Yet, as AI has been found to reproduce biases within training data, can it really be a departure from the long and difficult history of inequality in healthcare? 

Traditionally, women have been underrepresented in science, leading to conditions faced by half the world's population being ignored and women's symptoms being systemically underplayed and disbelieved. This resulted often in the lack of adequate understanding of female physiology. For decades studies on women’s healthcare have revealed how women’s pain is often misdiagnosed, psychologised, with women reporting having to work harder for their symptoms to be believed and addressed. 

Moreover, the history of psychiatry shows how diagnosing mental disorders has been used to oppress women. Today, we are facing great inequalities in the medical profession; for example, only one in ten surgeons in the NHS identify as female while patients with endometriosis need on average seven and a half years to receive diagnosis.




Reproductive health is a popular area for apps, with one subsection targeting users who suffer from symptoms compatible with endometriosis so they can track their pain and physical discomfort. Apps collect data that can then be presented to a physician, and via this process data seem more reliable and trustworthy. This type of app is presented as a solution for epistemic injustice because the data collection and visualisation of data points are seen as more objective and can thus accelerate diagnosis. The collected data can also be argued to power AI investigations into medical conditions, and, at the individual level, empower people by tracking their medical journeys.

The apps collect inputted information and present it to healthcare providers, aiming to alleviate epistemic injustice in the clinic though data visualisation. However, we contend that this ultimately shifts the burden of proof from the practitioner to the user rather than resolve the structural inequalities responsible for the phenomenon. The apps could ultimately increase the burden of proof for these conditions, requiring longitudinal self-tracking and interaction with the app interface, a labour cost to the individual who is seeking help. For those users who, for whatever reason, do not or cannot provide this information, then the barrier to healthcare will be further entrenched. Ultimately such apps could make epistemic injustice worse rather than alleviating it. The risk is that the issue will be obfuscated by techno-solutionism and that, ultimately, women are not to be believed without neatly packaged data.

Moreover, we are sceptical about the emancipatory role of such apps in improving healthcare for individuals who face epistemic injustice in the clinic. We are also concerned about the argument that the data these apps collect can truly empower research into conditions such as endometriosis. What is currently needed to advance understanding of the condition is more and better imaging and screening of those affected, which start with believing their symptoms. This is possible within traditional medical set-ups. So, before we get excited about the next toolkit, it is worth reflecting on why we expect technology to offer us solutions to deeply entrenched socioeconomic problems.





Dr Milena Ivanova is a philosopher of science interested in the relationship between science and art, creativity and the automation of discovery. She teaches medical professionals on the role of epistemic diversity in medicine and is interested in the presence of gender and racial bias in the history of medicine and psychiatry.
Dr Aisha Sobey is an interdisciplinary STS researcher, who is concerned with understanding the interaction of the digital systems and the human experience, especially concerning power structures.

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: