Why Disabled Voices Must Be Central to Health Research

Disabled people can experience profound health disparities. Yet, while these inequities are well-documented, one key question remains under-asked: who is conducting the research meant to address them?

In our paper, published in the Journal of Medical Ethics, we argue that the health research community must urgently confront a gaping omission - the absence of disabled researchers from within its own ranks. This exclusion, we contend, constitutes a form of epistemic injustice. Without the voices of disabled scholars at the table, how can we claim to fully understand, let alone solve, the very issues that affect them?

Epistemic injustice, a term first introduced by Miranda Fricker (2007), refers to a wrong done to someone in their capacity as a knower - denial of credibility or the opportunity to contribute knowledge. When disabled people are systemically excluded from academic research, their perspectives, insights, and lived experiences are undervalued or erased entirely. This leads to skewed understandings of disability and results in research, policy, and clinical practice that fail to capture the complexity of disabled lives.

The lack of representation is not accidental. Across the UK academy, structural and attitudinal barriers persist: inaccessible environments, discriminatory hiring practices, and a pervasive lack of institutional support. The “pipeline” for aspiring disabled health researchers is fractured at every level, from education through to recruitment, career progression, and funding. Often, disabled individuals must fight battles on multiple fronts just to gain access to a field that should be enriched by their insight.

                                    

We believe this silence has serious consequences. Disabled people are routinely positioned as objects of study, but rarely as agents of research. Their lived expertise is essential, not optional. Research that is truly inclusive and ethically grounded must involve those with direct experience of the issues at hand. Anything less reinforces the very inequalities we purport to address.

What needs to be done?

The good news is that change is possible. Academic institutions must take deliberate steps to dismantle these barriers - not through tokenism, but through genuine structural reform. Accessibility must be embedded into the fabric of research environments. Recruitment strategies must be inclusive by design. Mentorship and funding opportunities must actively support disabled scholars.

We also call on funders and policymakers to recognise the urgency of this issue. Resources should be directed towards diversifying the research community including supporting disabled-led research and scholarship that challenges dominant, often medicalised, narratives of disability.

Ultimately, we wrote this paper not just to critique the status quo but to imagine a better future: one in which disabled scholars are central to health research, shaping agendas, asking the right questions, and leading the work that affects their own communities. When research includes disabled voices, it becomes more accurate, more ethical, and more impactful.

We must fix the pipeline - not only to advance equity, but because the future of health research, and the well-being of the most overlooked population in society, depends on it.

Charlotte Blease (PhD) is an Associate Professor at Uppsala University. She is a health informaticist whose research spans philosophy, psychology, cognitive science and medical humanities. She is co-author of The Nocebo Effect: When Words Make You Sick. More about her research can be found here.

Joanne Hunt (MSc, MBACP, GMBPsS) is a disabled researcher with a background in psychological therapies. Her interdisciplinary research is sited at the intersection of disability studies, psychology, feminist studies and ethics, and includes the biopolitics of medically and societally ‘contested’ chronic illness and related disability. More about her research can be found here.

For more on ableism in academia see Brown, N (2021) and Brown, N & Leigh, J (2020).

Deaf Interpreters and Epistemic Injustice

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

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

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

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

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

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

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

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

 

 

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

Aesthetic Injustice, Epistemic Injustice, and Disability

Today's post comes from Professor Dominic McIver Lopes:

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

Cover for Aesthetic Injustice

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

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

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

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

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

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

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

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

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

"Trauma is not being seen or heard"

 epistemology 

noun, epis·te·mol·o·gy i-ˌpi-stə-ˈmä-lə-jē

the study or a theory of the nature and grounds of knowledge especially with reference to its limits and validity

Two weeks ago I went to dinner and drinks with members of the London ACEs (Adverse Childhood Experiences) Hub, it was a small group in which everyone came from very different backgrounds and professions including some with lived experience. You can see some of us here.

It struck me that the diversity of our group was evidence that expertise in Adverse Childhood Experiences and developmental trauma cannot be held by any specialty. Nobody can claim epistemic dominance. Like the blind men feeling an elephant and each being certain that the whole creature resembles the part they are feeling, in matters of trauma nobody can claim to be able to see the whole picture. Modern medicine is structured with specialists at the top and generalists (like GPs) at the bottom.

 

The Telegraph newspaper has had a series of headlines recently pointing out that GPs don’t know enough about cancer or antidepressants or anything else. According to The Telegraph if people are sick, they ought to a specialist. These are easy accusations to make and have been news headlines for my entire career and will continue until journalists understand and value the fact that generalist knowledge about the ways different illness interact is not the same as the accumulation of number of different specialisms. There were two GPs at the LAH dinner and drinks, evidence perhaps that GPs more than any other specialty see the ways that biography and biology are constantly affecting each other leading to familiar pattens of physical, psychological, and social disruption. Nevertheless, our medical perspective only captures part of the picture which is why our group includes people working in criminal justice, racial justice, education, community activism, parenting support, and more. We depend on one another to see the whole picture.

A few days after the dinner, I attended an interdisciplinary workshop about trauma with philosopher Havi Carel and a range of speakers including philosophers, literary scholars, educators, and a music therapist. Once again, none of us could claim epistemic dominance. Professor Havi Carel is perhaps best known for her work on Epistemic justice in healthcare. Epistemic injustice in healthcare happens when a professional assumes that because of certain characteristics their patient is an unreliable narrator and interpreter of their own experiences. Consequently they fail to listen to or take seriously what their patient has to say. The only story that counts is the medical history and the only interpretation that matters is the diagnostic formulation. Patients experience not being seen or heard, i.e. invalidation.

People who are suffering the consequences of trauma, living with what I describe as the trauma world of hypervigilance, shut-down, toxic shame, dissociation and harmful coping strategies, are especially likely to have characteristics that professionals assume render them unreliable witnesses. These include being a child or female or trans, being black or other ethnic minority, being neuro-divergent or having a mental illness, having any kind of physical or mental disability, having an addiction past or present, being homeless, having low levels of literacy or educational attainment and so on. Intersectionality matters, so a Black woman with a mental illness and an addiction is subject to multiple assumptions and is especially vulnerable to Epistemic Injustice. One of many valid definitions of trauma that I’ve heard from researchers including Bessel van de Kolk and Jacob Ham as well as survivors is,

“Trauma is not being seen or heard.”

Trauma happens under conditions of overwhelming stress where those affected are unable to talk about what’s happening because it is too dangerous or there is nobody who will listen. They learn to bottle it up and in so doing, increase the risk of the kinds of inflammatory and autoimmune disease that are hugely over-represented in people with traumatic life histories. A healthcare professional represents someone with power who may cause the patient to re-experience feelings of powerlessness, but also has the potential to provide a safe environment and attuned presence. If they feel safe enough, patients may want to talk about what has happened to them. If we refuse to listen or don’t listen carefully enough, then they may experience the traumatic invalidation that they have suffered before, and the potential harm is enormous. Patients with trauma are at greater risk of Epistemic Injustice and suffer greater harm from it.

My own Achilles heel as a doctor is explaining too much. I recently discovered a quote from Donald Winnacott, a child psychotherapist and paediatrician who worked near my practice over 50 years ago and it was reassuring to know that we have at least this in common:

“It appals me to think how much deep change I have prevented or delayed in patients in a certain classification category by my personal need to interpret. If only we can wait, the patient arrives at understanding creatively and with immense joy, and now I enjoy this joy more than I used to enjoy the sense of having been clever. I think I interpret mainly to let the patient know the limits of my understanding. The principle is that it is the patient and only the patient who has the answers. We may or may not enable him or her to encompass what is known or become aware of it with acceptance.” Playing and Reality

In my teaching about trauma, I use a quote from Leslie Jamieson, The Empathy Exams:

“Empathy is asking the questions whose answers need listening to.”

I hope to persuade the doctors and students that I teach, as well as constantly reminding myself that you can demonstrate your expertise by the questions you ask. In so doing we can enable patients to tell their stories and come up with interpretations that help them make sense of their experiences. It’s important to remember that figuring why you are like you are doesn’t necessarily make things better, and may even make things worse, but it is a necessary part of a healing process. Making sense of painful lives through stories is not a radical departure from clinical medicine, but an essential and inseparable part of it. Stories are how medical knowledge is transmitted and ‘how doctors think’ even if we’re unaware of it.

In summary, understanding epistemic (in)justice is essential for trauma-informed care because patients affected by trauma are more likely to not be listened to or taken seriously and are more likely to be harmed by invalidation. Because no specialty within medicine can claim epistemic dominance, they experience what Psychoanalyst Michael Balint described as the ‘collusion of anonymity,’ where “the patient is passed from one specialist to another with nobody taking responsibility for the whole person.”

The answer for me lies in creating a safe environment and continuity of care with well cared-for and respected generalist professionals who can truly listen.


Thanks to Flo, who has been helping me teach this and has inspired me to try to figure this out.

This post is authored by Jonathon Tomlinson who has been a GP and educator in Hoxton, East London for over 20 years.

Jonathon is especially interested in the intractable problems that characterise 'deep end' general practice like complex-trauma, chronic pain and the intersections between biography and biology.