Stigma as a Barrier to Self-Understanding

This blogpost is written by Alexander Edlich and Alfred Archer, writing about their recent paper in Social Epistemology entitled 'Rejecting Identities: Stigma and Hermeneutical Injustice'.

To seek, and accept, medical help, it is often necessary to realize that one needs it. Sometimes, however, people refuse to accept they need help, and this disables them from accessing medical resources. This refusal need not be due to stubbornness but can be the result of unjust social factors. In particular, we suggest that stigma can unjustly prevent people from making sense of their situation, including stigmatized illnesses. 

Take, for instance, the American writer Caroline Knapp’s account of her struggle to accept the idea that she was an alcoholic in her memoir Drinking: A Love Story. She describes how at times she was so drunk that she would ‘drive home with one eye shut, to avoid double vision’ (p. 54). 

After being advised by her therapist that she should stop drinking, she decided to attend an Alcoholics Anonymous meeting. Once in the meeting though, she felt a strong revulsion to accepting that she belonged there. As she describes it, she “looked around at the dingy room with the old men sipping coffee from foam cups and I thought, No way. No way in hell I’m doing this. This is not me. I do not belong here’ (pp. 190–191).

For Knapp to accept that she was an alcoholic would mean ‘owning up to flaws and imperfections and depths of confusion I was too ashamed to reveal’. This shame that she felt about her alcoholism was a response to the social stigma attached to it. Even when she had accepted her alcoholism and stopped drinking, Knapp continued to be very careful about which people she would discuss it with ‘for fear of being judged’ (p. 244). 

What prevented Knapp first from accepting and even longer from communicating about her situation was the stigma attached to alcoholism, and thus a social factor burdening those suffering from it. This made it harder for her to seek help.

The cover of Knapp's book

Knapp is far from alone in struggling with this, the stigma attached to alcoholism is a significant barrier to people seeking out medical assistance. This difficulty in accepting one’s addiction is a major problem, given that this acceptance is crucial for overcoming the addiction and also for seeking help in the first place.

While medical professionals are aware of the importance of reducing the stigma attached to medical conditions like addiction, the impact of stigma on self-understanding is not only practical, but, we argue, also creates a particular type of hermeneutical injustice: those whose experiences are stigmatized are unjustly made to reject helpful descriptions of their situation.

Hermeneutical injustice is the label philosophers use, coined by Miranda Fricker, to describe cases where the social practices of knowing, learning, and communicating are unjust so that persons in particular social positions are deprived of the means to make sense of their experiences. In paradigmatic cases, this occurs because dominant discourses do not include concepts that are needed to make sense of the experiences of marginally situated agents.  

For example, Fricker argues that before the development of the concept ‘sexual harassment’ people who experienced unwanted sexual attention in the workplace were not able to properly name their experiences. In this case, they were unfairly prevented from fully understanding the situation they were in because they lacked the concepts needed to articulate what it is they were experiencing, which, consequently, also disabled them from sharing their experiences. 

The stigma related to addiction (and other stigmatized experiences, like homosexuality or suffering intimate partner violence) also unfairly prevents people from making sense of their experiences but does so in a subtly different way. Here the conceptual resources are available to people. The concept of an alcoholic or an addict was available to Knapp and once she accepted that it applied to her, she was able to access the resources she needed to manage her addiction, including a supportive community of people struggling with the same problem. 

What prevented Knapp from accessing these resources was not the absence of a concept but the stigma that was attached to it. Knapp denied herself access to the hermeneutic resources that go with the label ‘alcoholic’ because of the stigma attached to this identity, which led her to refuse to accept that the label applied to her. In this way, stigma can unjustly cause people to reject helpful descriptions of their situation or identity.

To come to terms with a condition like addiction and to seek help about it, it is important to understand one’s situation and to accept it. Some people refuse such acceptance, and they can suffer gravely from it. This is a problem for medical practice, but, importantly, it can also be a problem of justice: to offer help, but also to treat people justly, we must make sure that stigma does not stand in the way of self-understanding.

Alexander Edlich completed his PhD at Ludwig-Maximilians-Universität Munich in 2023, where he then was a postdoctoral researcher. He works on moral responsibility (specifically blame, protest, and apology), the philosophy of emotions, and feminist and LGBTQ ethics.

Alfred Archer is Associate Professor of Philosophy at Tilburg University. He is interested in ethics, social philosophy, philosophy of sport, and moral psychology. He is the co-author of Honouring and Admiring the Immoral: An Ethical Guide (Routledge 2021), Why It’s OK to be a Sports Fan (Routledge 2024) and Extravagance and Misery: The Emotional Regime of Market Societies (OUP 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.