Playfulness for Justice in Chronic Pain Care

"How many squats/lunges can you do before you want to die?"

I suggest that we consider how to encourage playfulness in chronic pain care. Drawing on the framework provided by feminist philosopher Maria Lugones, I conceive of playfulness as an attitude, not an activity. Playfulness requires a) openness to co-creation and improvisation – a willingness to engage with others in a flexible and unscripted manner, b) openness to surprise – being receptive to unexpected outcomes and expressions, rather than striving for control of the situation, and c) openness to being a fool – rejecting perfectionism and expertise and allowing oneself to be vulnerable. Taken together, playfulness builds increased sensitivity to the world’s differences. Honing this attitude can safeguard against the injustices faced by people living with chronic pain.

Two common themes throughout the scholarship on pain are invisibility and un-shareability. The first, invisibility, refers to the idea that the pain of another is, in principle, inaccessible. The second, unshareability, refers to the challenges involved in expressing pain - bringing it out of concealment so that it might be accessed. These two themes are linked, and they create a lacuna, a lack of vocabulary with which to express and understand how chronic pain feels, what it does, and how it changes people’s lives. 

Medical paradigms and their associated technologies play a massive role in this perennial problem. Thus, these are examples of pathocentric epistemic injustice: injustices that are sustained by dominant medical systems and the theoretical conceptions of health that underpin them. Biomedical approaches to chronic pain mobilize a specific theoretical understanding of pain, and these understandings shape who is thought to be a credible speaker and what forms of expression and speech are intelligible. According to this framework, conceptions of health themselves can be unjust.  

While the field of pain studies has made progress in complicating narrow biomedical explanations of pain, as Patsavas (2014) notes, these communicative norms have yet to find their way into popular understandings of pain. For example, adjectives found on the McGill pain questionnaire, the most frequently used questionnaire for the multidimensional assessment of pain, have crept into the common lexicon. We may ask our friends to describe their pain with these familiar qualifiers, such as burning-, tingling-, or shooting-. We might also ask our friends to rate their pain on a scale of zero to ten, drawing on the Visual Analogue Scale used by medical professionals. 

But what if the person experiencing pain wants to describe their pain as a wave or a colour? What if I want to express my pain by making a long, guttural sound? In her creative non-fiction titled “The Pain Scale”, Eula Bliss reflects, “Although the distance between one and two is finite, it contains infinite fractions”. When patients are unable to express more than pain intensity, this may lead to guilt, shame, and alienation, all of which should be understood as affective determinants of health. That is, these emotional experiences can make one’s pain worse. Pain relief comes not only in the form of excising pain (should this be possible) but also in understanding it. There is thus a pressing need to carefully consider how we might expand, invent, and promote new modes of creative expression.

Field notes that capture participants' emphasis on laughter and play

My paper draws on fieldwork conducted at a somewhat unconventional chronic pain clinic located in Toronto, Canada. Instead of offering one-on-one interactions (between a ‘credible’ pain expert and ‘less-credible’ patient in pain), the clinic operated more as a support group. No pain was measured, and no medicines were prescribed. Instead, patients showed up to talk about how their pain was affecting them spiritually, physically, and existentially. They laughed, they opined, they meditated, and they moved around the room doing silly strength- and mobility-building exercises. 

At the beginning of my observations there, I was mesmerized by the playfulness and levitous mood of the clinic. Mastery was eschewed by the physician (Dr. C) – he frequently reminded participants that they, not him, were the masters of pain. From dark jokes to improvised seating arrangements to casual coffees afterward, this landscape marked a notable departure from biomedical contexts that contribute to pathocentric epistemic injustice in chronic pain care. I characterize MB clinic as imbued with the playful attitude described by Lugones, which is antithetical to the rigid and expert-driven models of healthcare.

This approach may serve as a potential reform that emphasizes patient participation and emotional well-being. In the future, I am interested in exploring how medical educators might encourage this sensibility in training, as well as how playfulness might be better incorporated into the tools that are used in diagnostic and therapeutic encounters. 

Michelle Charette is a PhD candidate in the Science and Technology Studies Program at York University. Her work draws on science studies, phenomenology, and feminist theory to consider how bodies and technologies interact. Her doctoral project examines e-health approaches to chronic pain care, and how these tools (games, applications, virtual reality) introduce novel issues and questions about chronic pain, technology, and ethics in medicine.

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.