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In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker (Epistemic injustice. Power and the ethics of knowing. Oxford University Press, Oxford, 2007). Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services-the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice.
Do ill people suffer epistemic injustice?
Havi Carel and Ian James Kidd
8,070 words
18 June 2013
In this paper we argue that ill persons can experience epistemic injustice in the sense
articulated by Miranda Fricker (2007). Ill persons can suffer testimonial injustice through the
presumptive attribution of characteristics like cognitive unreliability and emotional instability
that downgrade the credibility of their testimonies. Ill persons can also suffer hermeneutical
injustice because many aspects of the experience of illness are difficult to understand and
communicate and this often owes to gaps in collective hermeneutical resources. We then
argue that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the
practitioners and institutions of contemporary healthcare services the former owing to their
training, expertise, and third-person psychology, and the latter owing to their implicit
privileging of certain styles of articulating and evidencing testimonies in ways that
marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort
to ameliorate epistemic injustice.
Keywords epistemic injustice, illness, patient experience, phenomenology, patient
Running head Do ill people suffer epistemic injustice?
―That really, really hurts‖, says the woman who has just given birth to the doctor. He is
sitting by her splayed feet, which rest on stirrups either side of him. He is stitching her
vagina, his face inches away from her body. A crowd of doctors and nurses surround the
baby lying a few feet away. He is being bundled, rubbed, and his airways cleared by eight
health professionals. But none of them hear, or respond to, the womans complaint. She
repeats: ―That hurts. Are you using anaesthetic?‖. ―No‖, the doctor replies calmly, ―there is
no need to. I‘m nearly finished‖. The woman is too exhausted to persist and she says nothing
more. It is hard to imagine another situation in which we would not offer pain relief to
someone having a needle pushed through their genitals. But in this case the womans
testimony is not taken seriously enough to be acted upon. Her pain is either not fully
registered or not considered worthy of response. The womans claim about how much pain
she feels is dismissed.
Similar situations arise in the context of healthcare provision. Many of us are familiar with
stories about doctors who dont listen, large-scale healthcare systems that are impersonal and
bureaucratic, and feelings of helplessness when trying to navigate these systems. Focusing on
the epistemic dimension of these situations, we suggest that patients testimonies are often
dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming. A common
complaint from physicians is that patients speech is full of irrelevant information, that
patients are (understandably) upset and therefore can be irrational, and that listening for
This scene was observed by one of the authors (HC), whilst shadowing a paediatrician
consultant at Gloucestershire Royal Hospital, UK, on ???.
Do ill people suffer epistemic injustice?
medically relevant information precludes listening to other information conveyed in patient
speech (such as existential concerns, need for empathy, or emotional content). In addition,
since patients are not properly trained in the relevant medical terminology and the particular
discourse of health professionals, anything they did say may be judged to be insufficiently
So even if the patients testimony were relevant, emotionally balanced and so on,
what they say is not expressed in the accepted language of medical discourse and will
therefore be assigned a deflated epistemic status. As one physician said: ―patients say a lot of
irrelevant things like when I eat lettuce my elbow hurts. I have to listen carefully for the
important stuff and ignore the rest‖ (personal communication).
We propose submitting this problem to an epistemic analysis, using Miranda Frickers (2007)
notion of epistemic injustice. We argue that ill people suffer testimonial injustice, because
they are often regarded as cognitively unreliable, emotionally compromised, or existentially
unstable in ways that renders their testimonies and interpretations suspect. We present some
examples involving both somatic and mental illness. Ill people also suffer hermeneutical
injustice, because the kind of experiences illness affords are often difficult to make sense of
and communicate (Carel 2013). Perhaps certain extreme and unique experiences cannot be
communicated in any direct, propositional manner, and so are only shareable with persons
These discourses may vary greatly; we are not suggesting that there is only one such
Perhaps it is also a sort of epistemic injustice to complain that a persons style of testimony
is no good (inarticulate, etc.) but do nothing to ameliorate this (e.g. by critically reflecting
upon the reasons that one has for using these unhelpful formats rather than others). Epistemic
injustice might arise because (a) one buys into epistemically unjust structures or because (b)
one fails to challenge those structures.
whom one recognises to have had similar experiencesthose with whom one shares a
standpoint or a sense of solidarity, say.
We further argue that health professionals are considered to be epistemically privileged (in
both warranted and unwarranted ways) by virtue of their training, expertise and third-person
psychology; moreover, they decide which patient testimonies and interpretations to act upon.
We contrast cases in which patients have undeservedly low credibility with cases in which
patients have undeservedly high credibility. We show that these are two ways in which health
professionals clinical judgement is skewed because they assign too little or too much
epistemic credibility to patients. In certain extreme cases of paternalistic medicine patients
might simply not be regarded as epistemic contributors to their case in anything except the
thinnest manner (e.g. confirming their name or where it hurts). Denying someone credibility
they deserve is one form of epistemic injustice; denying them the role of a contributing
epistemic agent at all is a distinct form of epistemic exclusion (Hookway 2010).
Finally, we suggest that the structures of contemporary healthcare practice encourage
epistemic injustice because they privilege certain styles of articulating testimonies, certain
forms of evidence, and certain ways of presenting and sharing knowledge, e.g. privileging
impersonal third-person reports, in ways that structurally disable certain testimonial and
hermeneutical activities. To address this problem we propose that phenomenology, and in
particular a phenomenological toolkit (Carel 2012), may provide a useful hermeneutic
context within which patients can reflect on and share their illness experience. The toolkit
(and similar reflective practices) may improve communication at no cost to health
For an engaging discussion of the relationship between epistemic injustice, standpoint, and
solidarity, see Medina (2012).
Do ill people suffer epistemic injustice?
professionals because patients benefiting from the toolkit would be enabled (a) better to
articulate their experiences and (b) to thereby be more effective contributors to their care. The
phenomenological toolkit can address hermeneutical injustice by providing patients with a
framework through which to understand their experiences. It can address testimonial injustice
by both helping patients articulate their illness experience and aiding health professionals in
understanding it.
The structure of the paper is as follows: section one presents Frickers notion of epistemic
injustice and discusses illness as a case of testimonial and hermeneutical injustice. Section
two provides examples from healthcare to support our claims. Section three outlines the
epistemic privilege of health professionals and how healthcare practices are structurally
disabling. Section four proposes the phenomenological toolkit as one type of remedy for the
problem of epistemic injustice suffered by ill people.
1. Testimonial and hermeneutical injustice
Miranda Fricker argues that ―there is a distinctively epistemic kind of injustice‖ which is a
wrong done to someone in their capacity as knower (2007, 1). She identifies two such
wrongs, testimonial injustice and hermeneutical injustice. Testimonial injustice occurs when
prejudice causes a hearer to assign a deflated level of credibility to a speakers testimony.
Hermeneutical injustice occurs when a gap in collective interpretative resources puts a
speaker at a disadvantage when trying to make sense of their social experiences (ibid.). We
suggest that these two kinds of injustice characterise many attitudes ill people encounter
when they try to voice their opinions about their care, convey their experiences, or state their
priorities and preferences. In particular we suggest that an ill person may be regarded as
cognitively unreliable, emotionally compromised, existentially unstable or otherwise
epistemically unreliable in a way that renders their testimonies and interpretations suspect
simply by virtue of their status as an ill person with little sensitivity to their factual condition
and state of mind.
Epistemic injustice can manifest in different ways and to different degrees. Although all
instances of epistemic injustice will share a common conceptual core, that of denigrating or
downgrading certain persons testimonies and interpretations, the precise forms of such
injustice can vary greatly, ranging from the blunt and brutal to the subtle and difficult to spot.
In the case of illness, the forms that epistemic injustice can take will be shaped by a range of
factors, including particular healthcare policies, diagnostic practices, and even the format of
patient feedback forms. Such issues clearly make the task of identifying and characterising
the epistemic injustice that ill persons experience much more difficult, but they also offer a
double advantage. First, they make it easier to identify the specific practices and policies that
generate epistemic injustice in a given case. Second, they help to pinpoint our claim: it is not
that modern healthcare practices are epistemically unjust but that certain policies, practices
and cultural norms within modern healthcare practice are liable to generate epistemic
injustice. We do not argue that, say, the doctor-patient relationship is necessarily and
inevitably an epistemically unjust one, but rather that certain of the forms it can take are
prone to generate epistemic injustice. We aim to offer a means of identifying practices and
biases that lead to epistemic injustice in healthcare practice rather than to criticise this
practice tout court.
The charge of epistemic injustice can be analysed in terms of the two specific forms which
Fricker identifies: testimonial injustice and hermeneutical injustice. Although some writers,
such as Hookway (2010), have identified other forms that epistemic injustice can take, we
Do ill people suffer epistemic injustice?
take it that these are supplements to, rather than rejections of, the twin concepts of testimonial
and hermeneutical injustice as Fricker defines them.
An ill person can suffer testimonial injustice in one of several ascending ways. At the
simplest level, ill peoples testimonies can simply be ignored by healthcare professionals,
perhaps being heard but neither acknowledged nor considered. Or those testimonies may be
heard but excluded from epistemic consideration; so a genuinely sympathetic physician might
listen to her patients testimonies but fail to see that those testimonies may be worthy of
epistemic consideration, of being useful or informative, say. Patient testimonies may be heard
and acknowledged, but judged to be irrelevant or insufficiently articulate, and so once again
excluded from epistemic consideration. A patient may lack the language and concepts to
express their situation, perhaps resorting to clichés that physicians judge to be too coarse or
idiomatic to be of use, or feeling that they ought to employ formal medical vocabularies in
which they know themselves to be inexpert. Or those testimonies may be acknowledged but
subordinated to the authority of health professionals, so what the patient has to say is heard,
but coupled to the conviction that it is the expressed or implicit view of the health
professionals (and in particular physicians) that is authoritative or primary. So the ill person
may be judged to be a useful informant but not a participant in the collective practice of
interpretation and understanding of their medical situation. These indicate some of the
strategies, implicit or explicit, by which the testimonies of ill persons can be excluded or
downgraded in a way that secures the charge of epistemic injustice. Importantly, we do not
suggest that these strategies are systematically employed consciously or deliberately and
certainly not with malice (although they may be). Indeed, Fricker gives the example of a
woman who holds explicitly feminist views, but nonetheless discounts female political
candidates due to unconscious epistemic bias (Fricker 2007, 38). Rather, we are pointing to a
set of practices and behaviours based on presuppositions and assumptions that are rarely
reflected on and seem to be largely tacit.
To demonstrate this point here are two examples of inappropriate credibility assigned to
patient testimonies. The first example is that of Myalgic Encephalomyelitis/ Chronic Fatigue
Syndrome (ME/CFS) patients, whose disorder is not recognised by many physicians or
considered a psychiatric (not somatic) illness. In the 2011 documentary Voices from the
Shadows, directors Josh Biggs and Natalie Boulton interview ME/CFS patients, who report
distinctively somatic symptoms such as pain, sensitivity to light and noise, and fatigue.
However, because the medical and nosological status of ME/CFS is contested, these reports
are disbelieved or subsumed under a different interpretation (e.g. that the patients suffer from
abuse or that they have a psychiatric illness). Here are a few examples. One patient says: ―my
suffering was belittled‖ (2:25). Another comments on the high degree of disbelief in the
reality of ME/CFS as a bona fide disease (8:00). And a family reports that ―belief turns to
disbelief when tests come back normal‖ and describes how ―professionals turn against the
family‖ suspecting that the family is harming the child suffering from the condition (34:39).
In extreme cases, children with ME/CFS are removed from their family, care proceedings are
initiated, and children placed in closed psychiatric units or in foster care. These practices
stem from a deep disbelief in the reality of ME/CFS as a somatic medical disease. Given this
context, it is not surprising that patient and families testimonies are accorded no credibility
and their interpretation (that the child has ME/CFS) is rejected in favour of another
interpretation (that the child suffers abuse or has a psychiatric disorder).
Contrast this with documented cases of Munchausen Syndrome (factitious disease), in which
people produce or feign disease (e.g. by taking laxatives or wounding themselves) for
Do ill people suffer epistemic injustice?
complex psychological reasons.
In these cases, patients take up physicians time and are
given considerable medical attention although the symptoms are feigned or made up (Savino
& Fordtran 2006). Against the backdrop assumption that no one would seek medical help
unless they were ill, patient reports of symptoms are normally believed. Only after repeated
visits to the doctor, medical facts that contradict the patients story, or the absence of
supporting medical documentation, do health professionals revise the level of credibility
assigned to such patients testimonies. These two examples illustrate the power and discretion
exercised by health professionals when listening to patient testimonies and the two ways in
which credibility assignment can be faulty: too high or too low. However, this usually tacit
epistemic assessment taking place in patient-health professional encounters does not receive
attention in medical education and training and indicates the need for attention to this
What would testimonial justice look like? In testimonial justice the testimonies of ill persons
are recognised, sought out, included within epistemic consideration, judged to be relevant and
articulate (where they are) and, at least in certain respects, judged as epistemically
authoritative. The testimonially just health professional is ―alert to the possibility that her
relative unintelligibility to him is a function of a collective hermeneutical impoverishment,
and he adjusts or suspends his credibility judgement accordingly‖ (Fricker 2007, 7). So a
testimonially just physician, confronted with subjective, emotionally-charged, existentially-
intense patient testimonies whose medical value s/he cannot discern might think: ―The fact
The Baron Münchausen (17201797) was a German war hero who travelled around
Germany describing his military adventures. There is no evidence that he feigned disease or
duped people into caring for him. As Feldman (2004) notes, Rudolph Erich Raspe
appropriated the Barons name for the title of a 1785 pamphlet of outrageous and patently
false tales, Baron Munchausens Narrative of His Marvelous Travels and Campaigns in
that I dont understand you isnt your fault, but mine; even your best efforts to make yourself
understood are failing, not because of their inarticulacy, but because I am untrained in the
appreciation of the sort of articulacy you are using, and this hermeneutical context does not
provide me with those resources.‖
Similar considerations apply to cases of hermeneutical injustice; hence our treatment of this
will be brief. Hermeneutical injustice occurs when someones testimony is not squarely
disbelieved but a conceptual impoverishment in a particular culture prevents that person from
being able to clearly articulate their testimony. This generates what Fricker calls ―a gap in
collective hermeneutical resources‖ (ibid.). Fricker gives as an example the case of sexual
harassment in a culture in which the concept itself does not exist. How would one go about
making the relevant assertions if one lacks the concepts to do so? Importantly, hermeneutical
injustice needs to be cashed out in contextual terms e.g. showing what sorts of practices or
social norms or institutional structures generate it. Articulating this injustice is the task of this
In the case of illness, the interpretations that ill persons make of their own experiences may
simply be ignored or not sought out, or implicitly excluded through the establishment of a
culture in which patient testimonies are not respected or included within policy, thereby
withdrawing incentives to encourage ill persons to offer their interpretations. Or patient
interpretations may be heard and considered but judged to be irrelevant or insufficiently
articulate, perhaps because they are too bound up with subjective concerns and anxieties or
because the practice of taking them seriously is not recognised as being of potential
therapeutic value. Or those interpretations may be reductively seen as another source of
information that can be assessed or utilised by health professionals as if those hermeneutical
offerings were simply data and so not treated as being an epistemically distinctive form of
Do ill people suffer epistemic injustice?
knowledge. Later in the paper we appeal to phenomenology to indicate how a tendency to
elide first-person accounts with third-person reports can have deleterious consequences.
However, it is important to note that as well as being harmful, it is an epistemic error in itself
to collapse important distinctions between first-person and third-person reports because it
deprives us of sufficiently sophisticated and nuanced epistemic resources.
An ill person experiences hermeneutical justice, by contrast, when the interpretations of ill
persons are recognised, sought out, included within epistemic consideration, judged to be
relevant and articulate (where they are) and, at least in certain aspects, judged as
epistemically authoritative. An example of epistemic justice, incorporating both testimonial
and hermeneutical justice, is the case of Kingston General Hospital (KGH) in Ontario,
Canada. Following financial failure and high rates of patient complaints, KGH was
completely redesigned using patient input at each step. The hospital has a Patient and Family
Advisory Council and patient experience advisors are members of key hospital committees.
Every decision made at KGH must have a patient included in its consultation or provide a
reason why patients were not consulted; patient-health professionals co-design is
fundamental to the hospitals practice.
2. Examples of epistemic injustice in illness
The foregoing accounts are schematic and should not be interpreted as a rigidly categorical
description of the stages of epistemic injustice. Epistemic injustice must not be conceived in
es/default.aspx (accessed on 10 June 2013).
Leslie Thomson, KGH Chief Executive, talk at Kings Fund on 8th November 2012.
terms of abstract epistemological analysis alone, says Fricker, for it must be sensitive to a
socially situated account which recognises that human beings qua epistemic agents are
recognised as operating as social types who stand in relations of power to one another
(Fricker, 2007, 3). Therefore the epistemic injustice that is experienced by ill persons must be
sensitive to their social situation, comparative credibility, and so on, including factors such as
intergenerational variation in doctors attitudes towards their patients. We also need to
identify different degrees of injustice, to help pin certain sorts of injustice to certain persons,
to make easier the task of correlating forms of injustice to specific policies and practices.
Perhaps certain more conservative and authoritarian doctors might simply ignore patient
testimonies, whereas others do not. It also may be the case that health professionals would
welcome patient testimonies, but the acceptable formats for collecting such information does
not suit the kind of testimony patients wish to share (e.g. using yes/ no questions where
nuance and context are essential; giving limited space to describe an event or experience;
asking only about specific aspects of healthcare provision; asking patients to fill in such
questionnaires in public spaces with little time and privacy to reflect on the experience).
Here are some examples of testimonial and hermeneutic injustice
I asked a professor whether being exposed to reduced oxygen levels long-term, the
way I am, would have any detrimental effects on cognitive function e.g. would that
explain why my memory had rapidly become much worse? He just laughed off my
genuine and serious concern by saying he had the same problem and sometimes
couldnt even remember his wifes name. I never did get a proper reply to that
These examples are taken from responses to a query we posted on a patient mailing list in
Do ill people suffer epistemic injustice?
I dont mention problems because though they are real for me, theyre minor in the
grand scheme of things.
I had an abnormal cervical smear, so was sent to the large city teaching hospital for a
coloscopy. I changed into the usual ties-up-the-back gown, with the usual vital ties
missing, and then went through for the examination. Its a bit uncomfy but I was ok.
Lots of big sighs from the consultant with his head between my legs. Then off he
goes, leaving the room. Im told to follow. So I arrive, naked under a gown which
doesnt do up, slightly damp between the legs and a bit stressed as I have to sit down
and Im worried about leaving a wet patch. He goes on to tell me I need an operation.
I hear blah-blah-blah as Im perching and panicky. And its very difficult to think
without your pants on. I said nothing.
A disabled person complains that friends always ask ―What did the doctor say?‖ without
either the follow-up question ―And what do you think about what s/he said?‖, or by implicitly
treating the ill person as a testifier (a source of information) and the doctor as the
interpreter and actor (who acts on the information) (personal communication). Leontiou
concurs when she writes:
What I find most striking is that, when I reflect on the good interventions that I have
brought to my son, most have been recommendations from other mothers. Doctors
dont offer many ideas for navigating the world of disability. Yet, I am repeatedly
asked, ―What do the doctors say?‖ I don‘t know exactly how to answer this question.
Rather, Im interested in examining how asking this question places the doctor in a
Self-censoring is another form of epistemic injustice, in which the negative stereotyping is
internalised by the patient herself, leading her to downgrade her own testimony.
central position and gives the impression that the doctor is the only one who knows. I
have never been asked, What do other parents who are in your circumstance say?‖‘
(2010, 2)
More extreme historical examples are the following. The first is the case of curare, a poison
that causes paralysis that was used as a general anaesthetic for major surgery in the 1940s
under the misapprehension that curare was a general anaesthetic. As Daniel Dennett writes:
The patients were, of course, quiet under the knife [] but when the effects of the
curare wore off, complained bitterly of having been completely conscious and in
excruciating pain. The doctors did not believe them. (The fact that most of the
patients were infants and small children may explain this credibility gap). Eventually
a doctor bravely committed to an elaborate test under curare and his detailed
confirmation of his subjects reports was believed by his colleagues (1981, 209).
Another example also involves the use of anaesthetic. David Wootton describes how nitrous
oxide was discovered and its analgesic properties noted in 1795, but only put into use as
anaesthetic in 1846. He writes:
you need to imagine what it was like to become so accustomed to the screams of
patients that they seemed perfectly natural and normal; so accustomed to them that
you could read with interest about nitrous oxide, could go to a fairground and try it
out, and never imagine that it might have practical applications (2007, 22-3).
Let us offer one final example, that of psychiatric patients who also have a physical disorder.
Here is Elyn Saks account of her brain haemorrhage:
Do ill people suffer epistemic injustice?
Quickly, they bundled me into the car and took me to the emergency room. Where a
completely predictable disaster happened: the ER discovered I had a psychiatric
history. And that was the end of any further diagnostic work. […] Poor Maria was
literally jumping up and down trying to tell anyone whod listen that she had seen me
psychotic before and that this was different. But her testimony didnt help I was a
mental patient. The ER sent me home (2007, 232-3).
Saks also recounts the story of a psychiatric patient who went for weeks with a broken back,
because none of the medical staff the patient saw took his pain seriously (ibid., 232). These
last examples may seem extreme; we present them in order to demonstrate that epistemic
injustice in the case of illness can have devastating effects and can range from the subtle and
hard to detect bias to brutal rejection of clear evidence of suffering.
Such iterated experiences give rise to the self-propagating nature of such acts of exclusion:
the patients testimonials are ignored or downplayed, which upsets the person offering
testimony and interpretation. This on its own is wrong and gives rise to the common
complaint that the doctor doesnt listen to me. But it also affects future epistemic offers, so
testimonials may become infused with self-doubt and emotionally-charged, therefore
confirming the doctors perception of that patient as a poor testifier, leading to a vicious
circle of damaging communication.
3. Epistemic privilege
Another side to this discussion of epistemic injustice is the epistemic privilege accorded to
health professionals. This privilege is accorded by virtue of their training, expertise or third-
person psychology, such that they occupy the epistemically privileged role of receiving,
assessing and deciding which testimonies and interpretations to act upon, as well as deciding
what sorts of testimonies to receive, from whom, what form they can take, and so on. In this
section we will discuss this, more elusive, kind of epistemic injustice and relate it to the
difference between patients and physicians attitudes to illness. Moreover, we claim that the
structures and discourses of contemporary healthcare practice might encourage epistemic
injustice because they privilege certain styles of articulating testimonies, forms of evidence,
ways of presenting and sharing knowledge, and so on. We claim that modern healthcare
practices privilege impersonal third-person reports and empirical data over personal anecdote
and pathographic testimonies in a way that structurally disables certain testimonial and
hermeneutical activities. Different kinds of epistemic injustice can occur separately or could
be mutually reinforcing; where all three are present and active one has what Fricker calls
persistent systematic epistemic injustice (2007, 58). It is worth noting that many health
professionals might like to spend more time and energy taking seriously patient testimonies,
but the pressures of time, financial resource, task-based organisational processes, etc. that
they operate under forbid it. Many health professionals may be unwillingly epistemically
unjust and would have liked this aspect of their work to be different. Structural and
hierarchical features of the healthcare system are the cause of the epistemic injustice, rather
than any individuals intent.
Both health professionals and ill persons are epistemically privileged for different reasons.
But only the health professionals privileged epistemic status really matters when it comes
to healthcare practice and policy. The knowledge of patients is usually confined to the private
realm and is not readily incorporated into decision making, intervention design, and policy
documents. In recent years the terms patient centred-care, the patient expert, and patient
Do ill people suffer epistemic injustice?
experience have become more common in policy documents and mission statements, and we
hope that with time these translate into actual and concrete difference to healthcare
But healthcare failures are still abundant and reflect the institutionalising and
morally paralysing force of current healthcare provision arrangements.
There are several
reasons for the epistemic privileging of health professionals, and in particular of physicians.
First, on the medical view the goal of medicine is to repair physiological mechanisms. The
third-person view dominates this model and has no obvious room for first-person testimonies.
Second, in a performance-based target-driven culture patient input has little place. Third, in a
large-scale healthcare system in which performance is judged quantitatively, qualitative
statements are difficult to utilise. Fourth, patient views are often seen as anecdotal and
context-dependent and therefore lacking any long-term utility. Finally, patient views can be
as numerous as patients and therefore it is unclear whose views should be acted on.
The knowledge each group might bear is different. Patients have the knowledge of how a
particular condition feels, how it impacts on their life, and changes day-to-day activities
(Carel 2010). Only they can say whether a certain treatment causes pain, or how well they
feel. Health professionals have the scientific and medical knowledge of anatomy, physiology,
and so on and knowledge of available treatments. Of course the two domains of knowledge
See for example the work of organisations such as the Kings Fund and the Point of Care
Foundation and, for the UK National Health Service, Coulter and Ellins (2006), Greener
(2009), and McIver (2011).
A vivid and tragic example is the series of systematic failures which led to the death of
hundreds of patients, uncovered by the Mid Staffordshire NHS Foundation Trust Public
Inquiry, led by Sir Robert Francis in the UK. See: (accessed on 10 June 2013).
A recent analogous example is a student satisfaction survey at a UK university, in which
some students stated they wanted to be able to use their mobile phones in the library. As a
result the use of mobile phones was permitted in the library, no doubt to the detriment of the
many students who wanted the library to be a quiet place of study. Patient views may be
similarly in tension with one another.
do not belong exclusively to one epistemic group. For example, a physician with an extensive
experience of treating a particular disease may have excellent knowledge of the limitations on
daily living it may impose on patients although she has no first person experience of the
disease. Similarly, the patient expert may develop a deep understanding of their condition
and its causes, as well as be an authority on available and experimental treatments, trials, and
research in the field. Moreover, the two groups may work collaboratively to integrate and
promote both kinds of knowledge (Rosenbaum 2012). These two domains of knowledge are
different also in how such knowledge is gained (Carel 2013).
What is taking place in the epistemic domain with respect to these two groups and these two
kinds of knowledge needs to be related to broader issues concerning the relationships of
priority and power as well as reciprocity between different epistemically privileged
groups. Thus for example patients are expected to be told what to do by doctors, but doctors
are not expected, bar some rare cases, to be told what to do by patients. There is an
asymmetry in the relationship owing to an implicit hierarchy assigning the health
professional (normally a physician) a high epistemic status that is linked to a professional and
widely acknowledged social position.
The term epistemic privilege has three related components; parsing them will allow us to
offer a more fine-grained account of the epistemic relationship between ill persons and health
practitioners. A person or social type (doctor, consultant) may be epistemically privileged
because they have the authority to establish, and where necessary to enforce, the standards
and norms for epistemic exchange in a given community. For instance, the medical
community is epistemically privileged because it can define and characterise medical
concepts (like health and disease) and so sets the terms for authoritative debates about
Do ill people suffer epistemic injustice?
health and healing.
Although this does not prevent ill persons from having parallel debates,
it ensures that their debates are not considered authoritative.
A person or social type may be epistemically privileged because they occupy an authoritative
procedural role in epistemic exchanges, for instance by acting as gatekeepers controlling
which persons and groups are included, and what degree of credibility and authority they are
assigned, and acting to enforce discipline within the epistemic community. For instance, a
hospital review committee is epistemically privileged because it has the authority to decide
how to populate the committee, who are permanent and who are invited members, which
persons have secondary status (like observer or invited participant), who acts as chair,
what the agenda for debate is, and so on. A person or social type may be epistemically
privileged, finally, if they have what one might call power of decision, that is, if it is their
privilege to decide when an issue is settled, when enough evidence has been presented, when
a particular issue has been given sufficient time and attention, and so on.
These three forms of epistemic privilege are likely to arise together and be mutually
reinforcing. Consider a hypothetical case in which a group of patients with chronic rheumatic
disease are invited to sit on a committee reviewing the physiotherapy provision available to
them. Those patients might suffer epistemic injustice in this case because they lack epistemic
privilege in the three ways articulated above. First, they are denied any opportunity to
determine whether or not the definition of the concept of health being used is appropriate or
consonant with their experiences or reflective of their testimonies; for instance if health is
defined in terms of their performance of physiotherapy exercises rather than their capacity to
The fact that the medical community has these forms of social and epistemic power does
not, of course, entail that they always exercise that power in a robustly procedural manner
(see Kidd forthcoming a).
perform everyday tasks like driving. Second, their epistemic authority is minimised because
their status is that of invited observers who can be consulted (e.g. about the utility of current
physiotherapy arrangements) but who have no substantive critical powers (e.g. they can raise
objections, but only for the record). Third, those rheumatic patients lack any decisive role in
the review committee because they have no power of vote and so cannot enforce their
insistence that certain issues be readdressed or discussed more thoroughly.
We do not wish for this debate to sound one-sided or blind to the great epistemic merit of
medical training and practice. We do wish to draw attention to the type of procedures and
structures, as well as culture and discourse, common in Western healthcare and the resulting
epistemic injustice. We do not aim to attack any specific epistemic group, but point to the
current arrangements that give rise to epistemic injustice at a considerable cost to patients and
possibly to health professionals who are constrained by these very practices. To this end we
claim that it is useful to distinguish between warranted and unwarranted epistemic privilege,
e.g. healthcare professionals warrant epistemic privilege in their interpretation of a CT scan,
but not in deciding how a patient should die (e.g. in hospital or at home).We fully
acknowledge that certain persons and professions are epistemically privileged (at least in
certain cases). But there may be cases where the epistemic privilege of health professionals is
unwarranted; for instance if the assignment of epistemic privilege is grounded in the
presumptive judgement that there are no other plausible candidates for privileged epistemic
status in the context of certain forms of patient care. Many religious persons who experience
depression naturally turn to those persons they recognise as having clerical authority and who
are, in their judgement, charged with their spiritual and personal care (cf. Scrutton
forthcoming and Kidd forthcoming b). Some argue that doctors are exempt from certain
charges of epistemic error e.g. their being hoodwinked by the biases in the academic
Do ill people suffer epistemic injustice?
literature concerning the efficacy of drugs because they are simply too busy to perform the
long and complex processes of survey and analysis (cf. Goldacre 2012).
4. Addressing epistemic injustice: a phenomenological patient toolkit
So far we have examined epistemic injustice in illness. We argued that illness might give rise
to testimonial injustice, when patients claims are ignored or rejected, and to hermeneutical
injustice, when patients do not have the concepts with which to articulate their illness
experiences. In this section we claim that not only is this epistemic injustice unwarranted, but
that certain experiences of illness can afford epistemic privileges to the ill person that are not
otherwise available to (and perhaps not fully shareable with) persons not ill. This idea has
important ethical implications: it calls us to take seriously the standpoint of ill persons,
militates against paternalism, and acknowledges the essential role that ill persons should play
in the formulation and implementation of healthcare policy. We suggest that a particular
approach to illness, phenomenology, can give us the essential tools for overcoming epistemic
injustice and can therefore contribute to explicating the experience of illness. We further
suggest that phenomenology is intimately connected to issues of epistemic justice, since two
core phenomenological ambitions are to (i) identify and articulate the tacit structures that
underpin ones experience and engagement with the world and (ii) to provide a means of
taking seriously the (often radically different) experiences of others (cf. Ratcliffe 2012).
The idea behind the toolkit is that philosophical concepts can be a useful aid for patients who
are trying to make sense of their illness. Patients may have ethical, existential or
metaphysical concerns that have a distinctive philosophical flavour, but are not
conceptualised as such. For example, those nearing the end of life may reflect on its shortness
of life, and wonder whether they have lived a good life. Developing and articulating such
reflection is a distinctively philosophical activity, albeit of a unique sort. These reflections are
foisted upon the ill individual by their unwanted illness; the context in which this
philosophical activity takes places is difficult and physically and emotionally taxing; and
such reflection stems from concrete and idiosyncratic concerns rather than from engagement
with abstract questions. In order to enable this philosophical activity a toolkit has been
developed, which helps patients understand the impact illness may have on their life as a
whole (Carel 2012). It provides philosophical concepts through which the impact may be
understood. These concepts are taken from phenomenology and are utilised in order to
provide an account of the holistic and all-encompassing nature of illness (Carel 2008). The
practice of philosophy may help in this particular case to ameliorate epistemic injustice by
giving patients the ability to conceptualise and articulate their knowledge and interpretation
of their illness experiences, thus addressing the hermeneutical gap Fricker laments.
This toolkit is not intended to replace medical knowledge or treatment but to supplement it. It
answers a need identified by many patients as well as health professionals to better
understand the illness experience of individuals and groups with particular conditions. For
example, a GP pointed out the need for narrative humility among physicians, and the
personal growth that listening to patients in a holistic way would bring (personal
There is a knowledge that arises from having a particular illness
experience that should not be dismissed as irrelevant or too emotive, as it crucially interlaces
with and illuminates the medical facts. We propose that adding first-person accounts of the
illness experience to the overall medical picture may make diagnostic, therapeutic and
These ideas were brought up in a toolkit workshop conducted on 14 and 21 September
2012 in Bristol.
Do ill people suffer epistemic injustice?
empathetic contributions to healthcare provision. Incorporating patients insights can help
with the diagnosis and treatment of illness and also enrich health professionals empathy as
well as guard against alienation.
This involves the transition from the informational perspective, which sees the speaker as a
―potential recipient or source of information‖ to the ‗participant perspective, in which we see
the quest for knowledge as a shared enterprise and the patient speaker as ―competent to carry
out some particular activity that has a fundamental role in carrying out inquiries‖ (Hookway
2010, 156-7). As Hookway suggests, ―there could be a form of injustice related to assertion
and testimony that consisted, not in a silencing refusal to take the testimony to be true or
expressing knowledge, but in a refusal to take seriously the ability of the agent to provide
information that is relevant in the current context‖ (2010, 158). It seems to us that it is
frequently the ill persons ability to offer relevant assertions is being questioned, rather than
their ability to make assertions at all.
The patient in such cases is ―recognised as unable to
participate in activities whose content is intrinsically epistemic‖ (Hookway 2010, 159). A
forum in which patients can gain epistemic confidence and order and discern their
experiences of illness might help tackle epistemic injustice by supporting patients transition
from informational to participant perspective.
Here is a brief outline of the toolkit (for a fuller account see Carel 2012).The toolkit provides
a flexible individual tool which patients can use to develop their understanding of their
illness. It includes three steps: the phenomenological reduction, thematizing illness, and
reviewing the ill person‘s being in the world. Serious illness removes our conventional
understandings and expectations and is thus an opportunity to examine and re-evaluate
The case of some mental disorders, e.g. psychosis, would be different. In these cases the
patient may be considered altogether irrational and unable to make true assertions at all.
choices, routines, and habits. Merleau-Ponty (1964) says that reflection ―slackens the
intentional threads which attach us to the world and thus brings them to our notice‖ (xiii).
Illness enables such withdrawal, which is often imposed on the ill person. Phenomenology is
committed to making explicit aspects of experience that are overlooked by other approaches
and may be poorly understood. A phenomenological approach to the experience of illness
requires a suspension of a ―natural attitude‖ of implicitly accepting the background sense of
belonging to a world and various interpretive dogmas along with it. Bracketing the natural
attitude is a withdrawal from the ordinarily implicit commitment to the reality of the world
(Ratcliffe 2008, 4). As Husserl says, this is not a sceptical or idealist position. Rather, this
inhibiting or putting out of play of the natural attitude exposes ―the universe of
phenomena in the phenomenological sense‖ (Husserl 1999, 20). This suspension allows
under-theorized aspects of experience to become an object of inquiry because it enables us to
shift attention from the given object to the way in which it is given and its modes of
appearance to us.
Bracketing the natural attitude toward illness suspends the belief in the reality of an objective
disease entity. Shifting the focus away from the disease entity and toward the experience of it
can disclose new features of this experience. We usually take the disease entity for granted
and posit it as the source of the illness experience. But in fact, for the ill person the illness
experience comes before the objective disease entity (Toombs 1987). Once the belief in the
objective disease entity is bracketed and we are distanced from our usual way of
experiencing, we can begin to explore how illness appears to the ill person, its structure, and
its essential features.
The second step in the toolkit is thematizing illness. Thematizing refers to the act of
attending to a phenomenon, which makes particular aspects of it explicit (Toombs 1987,
Do ill people suffer epistemic injustice?
222). A theme for a particular consciousness is that upon which it focuses its attention. But
this does not simply denote the intentional object. It also takes into account the kind of
attentional focus given to an entity. Thematizing may include attending to the cognitive, emo-
tive, moral, or aesthetic aspects of a phenomenon. A patient may thematize her illness as a
central feature of her life, attending to her symptoms as pervasive, while the physician may
thematize the illness as a case of cancer, attending to symptoms as diagnostic clues (ibid.).
The understanding that illness is not an objective entity and the exercise of thematizing may
help patients because it enables moving away from prescriptive pronouncements toward a
descriptive mode. Thematizing can be used for bringing out the multiple perspectives on
ones illness that patient, family, health professionals, and others may have, as each will
thematize an illness differently. The patient may thematize her illness emotively, while a
health professional will thematize it cognitively. A family member may thematize illness as
an experience of empathy. Exploring the different thematic centres illness may have can
illuminate its multiple ways of appearing.
The third step of the toolkit is to take the new understanding of illness (as a form of
distancing that has been thematized) and examine how it changes ones being in the world.
The term being in the world is used by Heidegger (1962) to denote the human being in the
broadest sense. Being in the world includes the biological entity, the person, and her
environment and meaningful connections. This term provides a rich account of what it means
to exist as a human being. The toolkit uses being in the world to capture the pervasive effects
illness may have on ones sense of place, on ones interactions with the environment and with
other people, on meanings and norms, and on the nexus of entities, habits, knowledge, and
other people that makes up ones world. By moving away from a narrow understanding of
illness as a biological process, a thick account of illness as a new way of being in the world
can be developed by patients.
The toolkit has been shared with patient groups as well as with a group of GPs in a
consultative process. Initial reactions to it demonstrate the feasibility and helpfulness of such
a tool.
For example, the GP group consulted suggested the toolkit would be of particular use
with elderly patients and those suffering from depression. Patients suggested that the toolkit
would help them by empowering them to ―speak their mind‖ and offering an opportunity for
reflection rather than self-pity. Such a toolkit would allow a space for grieving and would
enable patients to take responsibility for their understanding of illness via enhancing their
self-knowledge. We are not suggesting that the toolkit is a sole way of addressing epistemic
injustice, but suggest it as one possible remedy, that in conjunction with other measures may
begin to address the problems outlined in this paper.
We would like to conclude by suggesting that on closer inspection it seems that the epistemic
injustice identified by Fricker is much more widespread than we would like to think. Fricker
herself comments: ―I believe that there are areas where injustice is normal and that the only
way to reveal what is involved in epistemic injustice (indeed, even to see that there is such a
thing as epistemic injustice) is by looking at the negative space that is epistemic injustice‖
(2007, viii). It would be interesting to view exchanges between social workers and clients,
These comments were collected during three consultative sessions. One, with a group of
GPs, took place on 14 June 2012 in Bristol. Two patient group sessions took place on 14 and
21 September 2012 in Bristol.
Do ill people suffer epistemic injustice?
prison inmates and wardens, police officers and suspects, to expose some similarities in the
styles of epistemic exclusion that characterise particularly asymmetrical power relations. We
hope we have begun this task by discussing the case of epistemic injustice in ill health and in
the exchanges between patients and health professionals.
Fricker writes:
prejudice tends to go most unchecked when it operates by way of stereotypical
images held in the collective social imagination, since images can operate beneath the
radar of our ordinary doxastic self-scrutiny, sometimes even despite beliefs to the
contrary [...] our everyday moral discourse lacks a well-established understanding of
the wrong that is done to someone when they are treated in this way (2007, 40).
It is our hope that this paper will contribute to the effort of lifting stereotypes and biases
about ill people and about illness from the unconscious collective imagination to the
conscious level and therefore make it available to the careful scrutiny it deserves.
This paper was written during Havi Carels British Academy Fellowship. She is grateful to
the British Academy for enabling this period of research leave. We are also grateful to
Miranda Fricker for her encouragement and to the men and women who generously shared
their illness testimonies with us.
Anderson, E. 2012. Epistemic justice as a virtue of social institutions. Social Epistemology 26
(2): 163-173.
Beeby, L. 2011. A critique of hermeneutical injustice. Proceedings of the Aristotelian
Society111(3)3: 479486. DOI: 10.1111/j.1467-9264.2011.00319.x
Biggs J.,N. Boulton 2011. Voices from the shadows. DVD documentary. UK.
Carel, H. (2008). Illness. Stocksfield: Acumen.
Carel, H. (2012). Phenomenology as a resource for patients. Journal of Medicine and
Philosophy 37(2): 96-113. DOI: 10.1093/jmp/JHS008
Carel, H. (2013). Bodily doubt. Journal of Consciousness Studies (in press).
Cegłowski M. (2012). No evidence of disease.
Coulter, A., J. Ellins 2006 Patient focused interventions: A review of the evidence. London:
The Health Foundation, available online at
Dennett, D. 1981. Brainstorms. Cambridge MA: MIT Press.
Feldman, M.D. 2004. Playing sick? Untangling the web of Munchausen syndrome,
Munchausen by proxy, malingering, and factitious disorder. New York: Brunner-Routledge.
Fricker, M. 2007. Epistemic injustice. Power and the ethics of knowing. Oxford: Oxford
University Press.
Goldacre, B. 2012. Bad pharma. London: Fourth Estate.
Do ill people suffer epistemic injustice?
Greener, I. 2009. Healthcare in the UK: Understanding continuity and change. Bristol: The
Policy Press.
Heidegger, M. 1962 [1927]. Being and time. Oxford: Basil Blackwell.
Ho, A. 2010. Trusting experts and epistemic humility in disability. International Journal of
Feminist Approaches to Bioethics 4(2): 102-123.
Hookway, C. 2010. Some varieties of epistemic injustice: response to Fricker. Episteme
2010: 151-163.
Husserl, E. 1999 [1931]. Cartesian meditations. D. Cairns (trans.). Dordrecht, The
Netherlands: Kluwer.
Kidd, I.J (forthcoming a). A pluralist challenge to integrative medicine: Feyerabend and
Popper on the cognitive value of alternative medicine. Studies in History and Philosophy of
Biological and Biomedical Sciences.
Kidd, I.J. (forthcoming b). Transformative suffering and the cultivation of virtue.Philosophy,
Psychiatry, & Psychology
Leontiou, J. F. 2010. What do the doctors say?New York: iUniverse.
McIver, S. 2011. User perspectives and involvement. In: Healthcare management 2nd ed.
(pp.354-372), K. Walshe and J. Smith (eds.) Maidenhead: Open University Press.
Medina, J. 2012. The epistemology of resistance: Gender and racial oppression, epistemic
injustice, and the social imagination. Oxford: Oxford University Press.
Merleau-Ponty, M. 1962 [1945]. Phenomenology of perception. New York: Routledge.
Ratcliffe, M. 2008. Feelings of being: Phenomenology, psychiatry and the sense of reality.
Oxford: Oxford University Press.
Ratcliffe, M. 2012. Phenomenology as a form of empathy. Inquiry 55(5).
Rosenbaum, L. 2012. How much would you give to save a dying bird? Patient advocacy and
biomedical research. New England Journal of Medicine 367:1755-1759. DOI:
Saks, E. 2007. The center cannot hold. My journey through madness. New York: Hyperion.
Savino, A.C., J.S. Fordtran. 2006. Factitious disease: clinical lessons from case studiesat
Baylor University Medical Center. Proceedings of Baylor University Medical Center 19:195-
Scrutton, A. (forthcoming) Two Christian theologies of depression: An evaluation and
discussion of clinical implications, Philosophy, Psychiatry, & Psychology.
Toombs, S.K. 1987. The meaning of illness: A phenomenological approach to the patient-
physician relationship. The Journal of Medicine and Philosophy 12:21940.
Wanderer, J. 2011. Addressing testimonial injustice: being ignored and being rejected. The
Philosophical Quarterly 62(246): 148-169.
Wootton, D. 2007. Bad medicine. Oxford: Oxford University Press.
Do ill people suffer epistemic injustice?
... It means that while interacting in institutional settings, they do so within a context of epistemic asymmetry. [6][7][8][9] For each epistemic domain, actors occupy a position on a gradient from knowing to not-knowing, which they implicitly mark by pointing to 'presupposed access to knowledge or the rights to knowledge'. 10 Their institutional epistemic positions must be distinguished from their epistemic stances, which concerns 'the moment-by-moment expression of these relationships, as managed through the design of turns at talk'. 11 Positions are fixed, stances are not. ...
... 11 The epistemic primacy of biomedical over experiential knowledge in the medical system severely constrains patients' ability to exercise choice, 12 and 'patients' testimonies are often dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming'. 6 Our aim in this study is to explore the ways in which a patient and a GP negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge through a case study of one complete naturally occurring clinical consultation. Our analysis involves capturing the ways in which the two parties mark their epistemic positions and stances, and interpreting their knowledge claims in relation to the sociocultural context in which their interaction is embedded. ...
Full-text available
Introduction: Our aim is to explore the ways in which a patient and a general practitioner (GP) negotiate knowledge claims stemming from different epistemic domains while dealing with a mismatch between experiential and biomedical knowledge during the clinical consultation. We interpret their interaction in relation to the sociocultural context in which their negotiation is embedded and identify factors facilitating their successful negotiation (a medical error is avoided). Methods: Based on a narrative analysis of a verbatim transcript of a complete naturally occurring primary care consultation, we explore the moment-to-moment unfolding of talk between the patient and the GP (two women). Findings: The patient experiences symptoms of what she interprets as a thyroid condition, and indirectly asks for medication. She presents her case by drawing on experiential knowledge ('it feels like my metabolism has shut down') and biomedical knowledge (while suggesting a diagnosis and a diagnostic test). The GP informs her that her thyroid blood tests are normal and uses biomedical knowledge to explain why she turns down the patient's request. This stages a potential conflict between the patient's embodied experiential knowledge and the doctor's biomedical knowledge. However, during their encounter, the patient and the GP manage to co-construct the patient's illness story and make shared decisions about further actions. Conclusion: The transition from potential conflict to consensus is a result of the mutual efforts of two parties: a patient who persistently claims experiential as well as biomedical knowledge while at the same time deferring to the GP's professional knowledge, and a GP who maintains her epistemic authority while also acknowledging the patient's experiential and biomedical knowledge. Patient and public contribution: Our empirical data are sourced from a data archive and patients were not involved in the design or conduct of the study, but our study is based on a naturally occurring clinical consultation with a patient.
... Indeed, this might be a candidate for a case of localized loss of trust disposing one toward a more pervasive loss of trust. As is well documented, people living with chronic illnesses cite difficult interactions with GPs, employers, friends and family; sufferers can be stereotyped as neurotic or hyperbolic (Carel, 2016;Kidd & Carel, 2014. With complex, poorlyunderstood chronic conditions, people can face the additional burden of not being believed or being accused of malingering (Armentor, 2017;Blease et al, 2017;Byrne, 2020). ...
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Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance.
... This medicalization of disability both contributes to and is exacerbated by the underemphasis of the patient's perspective-i.e., the patient's views on their own health and functioning and their priorities for care and quality of life-in the health record. Epistemic injustice is often encouraged by privileging medical assessment over personal experience, elevating the clinician's status and diminishing the patient's perspective [36]. At the same time, medical professionals may disregard or deem unreliable information reported by disabled people [37]. ...
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People with disabilities disproportionately experience negative health outcomes. Purposeful analysis of information on all aspects of the experience of disability across individuals and populations can guide interventions to reduce health inequities in care and outcomes. Such an analysis requires more holistic information on individual function, precursors and predictors, and environmental and personal factors than is systematically collected in current practice. We identify 3 key information barriers to more equitable information: (1) a lack of information on contextual factors that affect a person’s experience of function; (2) underemphasis of the patient’s voice, perspective, and goals in the electronic health record; and (3) a lack of standardized locations in the electronic health record to record observations of function and context. Through analysis of rehabilitation data, we have identified ways to mitigate these barriers through the development of digital health technologies to better capture and analyze information about the experience of function. We propose 3 directions for future research on using digital health technologies, particularly natural language processing (NLP), to facilitate capturing a more holistic picture of a patient’s unique experience: (1) analyzing existing information on function in free text documentation; (2) developing new NLP-driven methods to collect information on contextual factors; and (3) collecting and analyzing patient-reported descriptions of personal perceptions and goals. Multidisciplinary collaboration between rehabilitation experts and data scientists to advance these research directions will yield practical technologies to help reduce inequities and improve care for all populations.
... identified two forms of epistemic injustice: testimonial injustice, where evidence provided by a person is not taken seriously because of who they are (e.g. a client's evaluation of therapy being disregarded because of their alleged diminished capacity for rationality) and hermeneutical injustice when a source of evidence is not well enough understood at an institutional or organisational level for it to be taken into account (e.g. when journal reviewers reject qualitative research manuscripts because of lack of knowledge of qualitative methodology). Epistemic injustice has been identified as highly prevalent in mental health settings, for instance in terms of lack of credence given to the cultural and experiential knowledge of service users, and black and minority ethnic staff and clients (Carel and Kidd, 2014;Crichton et al., 2017;Kidd and Carel, 2017;Newbigging and Ridley, 2018). Epistemic injustice may also occur with research groups, for example when qualitative data are analysed by members of a research team that includes novice researchers alongside senior academics, or individuals from different cultural or social class backgrounds (Levitt et al., 2021a). ...
... Several of our participants noted the lack of information and interpretative resources available to help them make sense of their subjective illness experiences. Our research builds on other studies that demonstrate that patients' testimonials were often dismissed as emotionally unstable, irrational or unreliable due to the epistemic privilege enjoyed by both organisations and their practitioners (Carel & Kidd, 2014). ...
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Abdominal surgery carries with it risks of complications. Little is known about patients’ experiences of post-surgical deterioration. There is a real need to understand the psychosocial as well as the biological aspects of deterioration in order to improve care and outcomes for patients. Drawing on in-depth interviews with seven abdominal surgery survivors, we present an idiographic account of participants’ experiences, situating their contribution to safety within their personal lived experiences and meaning-making of these episodes of deterioration. Our analysis reveals an overarching group experiential theme of vulnerability in relation to participants’ experiences of complications after abdominal surgery. This encapsulates the uncertainty of the situation all the participants found themselves in, and the nature and seriousness of their health conditions. The extent of participants’ vulnerability is revealed by detailing how they made sense of their experience, how they negotiated feelings of (un)safety drawing on their relationships with family and staff and the legacy of feelings they were left with when their expectations of care (care as imagined) did not meet the reality of their experiences (care as received). The participants’ experiences highlight the power imbalance between patients and professionals in terms of whose knowledge counts within the hospital context. The study reveals the potential for epistemic injustice to arise when patients’ concerns are ignored or dismissed. Our data has implications for designing strategies to enable escalation of care, both in terms of supporting staff to deliver compassionate care, and in strengthening patient and family involvement in rescue processes.
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This study presents descriptions of epistemic injustice in the experiences of women medical students and provides accounts about how these students worked to redress these injustices. Epistemic injustice is both the immediate discrediting of an individual’s knowledge based on their social identity and the act of persistently ignoring possibilities for other ways of knowing. Using critical narrative interviews and personal reflections over an eight-month period, 22 women students during their first year of medical school described instances when their knowledge and experience was discredited and ignored, then the ways they enacted agency to redress these injustices. Participants described three distinct ways they worked to redress injustices: reclaiming why they belong in medicine, speaking up and calling out the curriculum, and uplifting one another. This study has implications for recognizing medical students as whole individuals with lived histories and experiences and advocates for recognizing medical students’ perspectives as valuable sources of knowledge.
Decades of research show that psychosocial treatments are effective for psychosis, yet they remain unimplemented as the American healthcare system relies primarily on pharmacological solutions instead. This book reviews the history and current state of research to provide a more nuanced understanding of the evidence for and barriers to psychosocial care for psychosis. It addresses a wide range of mental health research and multi-professional practice domains from historical, personal, societal, professional, and systems perspectives. The varied perspectives presented illustrate factors that limit support for recovery in SMI and psychosis as well as real hope for recovering the US mental healthcare system. With contributions of experts by training and by experience, this book represents an essential resource for students, practitioners and researchers.
With the increasing offer of fertility treatment by a largely privatised sector, which has involved the proliferation of treatment add‐ons lacking evidence of effectiveness, In‐Vitro Fertilisation (IVF) patients are expected to make informed choices on what to include in their treatment. Drawing on interviews with 51 individuals undergoing fertility treatment, this article explores patients’ approaches to medical evidence interpretation and its role in their decisions to include add‐ons. While most IVF patients share understandings of what counts as medical evidence, our findings show how their approaches also differ. Our analysis focuses on how patients negotiate the notion of medical evidence and its relation to other forms of experience or knowledge. We present four different approaches to evidence in IVF: (1) delegating evaluations of evidence to experts; (2) critically assessing available evidence; (3) acknowledging the process of making evidence; and (4) contextualising evidence in their lived experience of infertility. We suggest that patients’ choice to include add‐ons is not due to a lack of information on or understanding of evidence, but rather should be interpreted as part of the complexity of patients’ experiences of infertility.
Background: Recent empirical studies have described and theorized a culture of shame within medical education in the Anglo-American context (Bynum). Shame is universal and highly social human emotion characterized by a sense of feeling objectified and judged negatively, in contrast to one's own self-concept. Shame has both an embodied and a relational dimension. Shame is considered especially relevant in healthcare settings (Dolezal and Lyons), and the tenets of patient care within the medical profession include respecting the dignity and upholding the safety of patients. However, shame is frequently deployed as a teaching tool within medical training. Method: Here I ask, what can shame do in medical education (Ahmed)? What epistemic and relational conditions does it construct? I draw from philosophical voices in higher education to illuminate how shaming practices in medical education can undermine dignity safety (Callan), preclude inclusivity, and in the context of the hierarchical and marginalizing medical system, propagate epistemic injustice (Fricker). Discussion: This argument shows how shame in education can be both phenomenologically and normatively problematic and may act differently upon students who experience marginalization and those who are majoritized. I further suggest that a medical education system which upholds the epistemological and relational frameworks of power, shame, and epistemic injustice, underscores those frameworks in the medical system at large, disserving individual patients who are already at risk of suffering epistemic injustice (Carel), and society at large. Conclusion: This analysis of shame in medical education focuses on the highly relational and interpersonal elements of learning to live and work in the medical system, highlighting the need for respect, trust, and resistance to reorient the relational learning environment toward individual and systemic forms of justice.
We draw from Miranda Fricker’s theory of epistemic injustice in evaluating the impact of limited cultural diversity within the integration literature. Since culture and social location are frameworks that help us make meaning of the world, failing to actively engage culture in integration is to perpetuate hermeneutical injustice. In this paper, we propose: (1) a theoretical model for actively engaging culture in the integration of psychology and theology, called the Cycle of Cultural Integration (CCI), and (2) practical ways for educators and students to incorporate generational and cultural wisdom that has been embedded among communities of color into interdisciplinary work between psychology and Christian theology.
Drawing on contributions from user activists and academic researchers, this topical reader provides a critical stock take of the state of user involvement. It considers different contexts in which such involvement is taking place and includes diverse and sometimes conflicting perspectives on the issues involved. This original and insightful critique will be an important resource for students studying health and social care and social work, researchers and user activists.
Miranda Fricker's important study of epistemic injustice is focussed primarily on testimonial injustice and hermeneutic injustice. It explores how agents' capacities to make assertions and provide testimony can be impaired in ways that can involve forms of distinctively epistemic injustice. My paper identifies a wider range of forms of epistemic injustice that do not all involve the ability to make assertions or offer testimony. The paper considers some examples of some other ways in which injustice can prevent someone from participating in inquiry.
Carel, Christianity, edification, illness, religion, suffering, virtue The idea that certain experiences of suffering can be positively transformative has a central role in the practical and pastoral aspects of Christian theology. It is easy to identify different historical and doctrinal reasons why physical, mental, and spiritual suffering enjoy a central role in that tradition, but less easy to articulate and justify the provocative claim that suffering can be positively transformative. Indeed, some critics protest that the very idea is deeply offensive, on moral, theological, and psychological grounds, and those critics have included many Christian laypeople and theologians.1 Given the prospects and problems of claims about transformative suffering, one ought to welcome Anastasia Scrutton’s recent development of a robust account of ‘potentially transformative’ theologies of depression (Scrutton 2011, 2015a). My aim here is to contribute to her account in two ways—first, by suggesting that the operative notion of transformation can be understood in terms of the cultivation and exercise of virtues, what I call edification, and second by suggesting that an edificationist interpretation offers resources that strengthen Scrutton’s account of potentially transformative (PT) theologies.2 The core claim of an edificationist conception of suffering is that certain experiences can afford distinctive opportunities for the cultivation and exercise of virtues. My account of an edificationist conception of illness draws upon the phenomenological model of illness developed by Havi Carel.3 Central to that model is the claim that experiences of illness involve the diminishment and disappearance of a person’s cognitive, physical, and social capacities—of the gradual loss of one’s mobility, memory, social confidence, and so on. Carel argues that there are two forms of response to capacity loss in illness: the first consists of familiar biomedical responses, such as surgery or drug regimens, and the second consists of ‘positive responses,’ including ‘adaptability’ and ‘creativity.’ Such positive responses involve the ill person adjusting their attitudes and activities in ways that ameliorate or minimize the negative impact of capacity loss on their life, such as the adaptation of their daily routine or creative identification of new ways to perform old tasks. Carel concludes that such positive responses to illness can allow an ill person to achieve a ‘modified but nonetheless rich texture of life’ (2007, 109). My suggestion is that Carel’s [End Page 291] claims reflect a latent edificationism, because positive responses to illness are interpretable as the cultivation and exercise of virtues in a way that is positively morally transformative—or edifying. There are three claims in common to edificationism and PT theologies. First, each emphasizes the intrinsically negative character of suffering, despite its positive edifying potential. Second, each emphasizes that suffering is only potentially edifying or transformative, such that the fact of one’s suffering is not, in itself, an inevitable source of positive transformation—a point reiterated by many ill persons.4 Third, both edificationism and PT theologies emphasize that the positive potential of suffering is contingent upon the sufferers’ response to their suffering. Scrutton’s account therefore shares with my account of edificationism the core claim that certain persons can respond to their experiences of illness in positively transformative ways. Furthermore, edificationism can offer two specific contributions to her account of PT theologies. The first is that transformation can be understood in terms of the cultivation and exercise of virtues—of being edified—in a way that finds support from both Christian theology and the case studies of PT theology that Scrutton offers. Christian ethics has a strong virtue-ethical tradition that recognizes virtues, such as humility and tolerance, that edificationists often appeal to, in each case because those virtues are responses to the inherent frailty of the human condition. Augustine urged Christians to make “wise and appropriate use” of their illnesses in order to “exercise … humility” by appreciating the “frailty of … mortal flesh” (Larrimore 2001, 55–6). Scrutton also quotes remarks by Nouwen and Palmer that testify to the ways that their experiences of suffering led to the cultivation of virtues - of ‘greater trust’ and ‘stronger hope’—and to the ways that they had undergone...
suffering, mystics, pastoral, Dark Night of the Soul, Mother Teresa, biomedical, mental illness There are many Christian theologies of depression. Depression is spoken of variously as the result of personal or original sin, as a kind of sin (e.g., despair), as a sign of demonic possession or as involving demons, as a test of faith, as a sign of holiness, or as an occasion for spiritual transformation. Although it is difficult to draw any absolute distinctions, we might helpfully split them into the following three categories for the sake of discussion: (i). Spiritual illness SI), in which depression and other forms of mental illness are believed to be a kind of SI. This includes the ideas that depression is caused by sin or demons or both); (ii). Spiritual health SH), where depression is viewed as an indication of and means to furthering) holiness or closeness to God; and (iii). Potentially transformative PT), where depression along with many other instances of suffering1) is inherently bad and undesirable, but can become the occasion for the person’s spiritual growth e.g., compassion, insight, appreciation of beauty). Of these three, SI theology is the most famous, being so well-known that it is simply dubbed the ‘Christian belief model’ or the ‘religious explanation’ in some sociology of religion literature (Hartog and Gow 2005; Mathews 2008). SI theology is still common, particularly in some Evangelical and Charismatic communities. As someone on the receiving end of this theology describes it: When dealing with people in the church ... some see mental illness as a weakness—a sign you don’t have enough faith. They said: ‘It’s a problem of the heart. You need to straighten things out with God.’ They make depression out to be a sin, because you don’t have the joy in your life a Christian is supposed to have. Because of the prevalence of SI accounts in highly vocal Christian communities, such as some Evangelical communities, and because of the testimony by depression sufferers of the effect this theology has had on them, SI accounts have been well-documented by sociologists, pastoral theologians, [End Page 275] and other academics and practitioners. However, SH and PT theologies are also worthy of attention, because these too are found among a number of Christians. Furthermore, philosophical exploration of these theologies may not only challenge existing perceptions of Christian views of depression and other forms of mental illness, but, in addition, may offer valuable therapeutic resources for psychiatric and medical practice. In this paper, I outline and evaluate SH and PT theologies of depression. I argue that, within the context of Christian theology, SH theology has valuable properties but also some severe problems, whereas PT theology maintains the most valuable properties of SH theology without sharing its pitfalls. The discussion is relevant to debates about the relationship between mystical and pathological experiences of mental distress—a debate that has important clinical implications about the treatment of service users who interpret their experiences in religious terms. In the second part of the paper, I examine some of these clinical implications in critical dialogue with Simon Dein and Gloria Durà-Vilà’s 2009 article, ‘The Dark Night of the Soul: Spiritual Distress and Psychiatric Implications,’ applying the conclusions of the first part of the paper to argue that distinguishing between pathological and salutary depression is mistaken and dangerous. Although the primary focus of my discussion is depression, there is a related debate about the pathological status of some religiously experienced forms of psychosis (hearing voices, seeing visions/hallucinations), and at times reference are made to these experiences and that debate. In my concluding remarks, I reflect on the broader theological and philosophical context of the PT theology I have advocated. I am approaching this question as a philosopher of religion, and have an interest not only in describing different Christian theologies of depression (although I am interested in this), but also in evaluating them using philosophical and theological criteria. As a result, the article...
This book explores the epistemic side of oppression, focusing on racial and sexual oppression and their interconnections. It elucidates how social insensitivities and imposed silences prevent members of different groups from interacting epistemically in fruitful ways-from listening to each other, learning from each other, and mutually enriching each other's perspectives. Medina's epistemology of resistance offers a contextualist theory of our complicity with epistemic injustices and a social connection model of shared responsibility for improving epistemic conditions of participation in social practices. Through the articulation of a new interactionism and polyphonic contextualism, the book develops a sustained argument about the role of the imagination in mediating social perceptions and interactions. It concludes that only through the cultivation of practices of resistance can we develop a social imagination that can help us become sensitive to the suffering of excluded and stigmatized subjects. Drawing on Feminist Standpoint Theory and Critical Race Theory, this book makes contributions to social epistemology and to recent discussions of testimonial and hermeneutical injustice, epistemic responsibility, counter-performativity, and solidarity in the fight against racism and sexism.
Justice is one of the oldest and most central themes of philosophy, but sometimes we would do well to focus instead on injustice. In epistemology, the very idea that there is a first-order ethical dimension to our epistemic practices - the idea that there is such a thing as epistemic justice - remains obscure until we adjust the philosophical lens so that we see through to the negative space that is epistemic injustice. This book argues that there is a distinctively epistemic genus of injustice, in which someone is wronged specifically in their capacity as a knower, wronged therefore in a capacity essential to human value. The book identifies two forms of epistemic injustice: testimonial injustice and hermeneutical injustice. In doing so, it charts the ethical dimension of two fundamental epistemic practices: gaining knowledge by being told and making sense of our social experiences. As the account unfolds, the book travels through a range of philosophical problems. Thus, the book finds an analysis of social power; an account of prejudicial stereotypes; a characterization of two hybrid intellectual-ethical virtues; a revised account of the State of Nature used in genealogical explanations of the concept of knowledge; a discussion of objectification and 'silencing'; and a framework for a virtue epistemological account of testimony. The book reveals epistemic injustice as a potent yet largely silent dimension of discrimination, analyses the wrong it perpetrates, and constructs two hybrid ethical-intellectual virtues of epistemic justice which aim to forestall it.