Julia Kristeva | site officiel






Eivind Engebretsen

The medical concept of evidence and the irreducible singularity of being


I will first like to thank you and the other organizers and initiators of the Kristeva Circle for planning and setting up this wonderful event. It is a great honor for me to be invited to participate in this celebration of one of the greatest intellectuals of our time.


I had the great pleasure of working with professor Kristeva some years ago, first by initiating the Norwegian translation of her Open Letter to the President of the Republic on Citizens in the Situation of Disability and later by organizing the Julia Kristeva Days in Oslo in 2009 which through a series of events drew attention to the socio-political aspects of Kristeva’s thought focusing mainly on her work on difference and disability. This event also resulted in an anthology in Norwegian containing contributions by Kristeva herself as well as other prominent French and Scandinavian researchers within this field.


It is also this collaboration that has inspired the topic of today's talk. Although I have a background in the human sciences myself, my principal engagement with Kristeva's thought has been about arguing and demonstrating the relevance of her concepts and approaches for other disciplines outside the humanities, such as social policy and medicine. By medicine I do not only mean psychoanalysis where her thought has an unquestionable role. I am convinced that Kristeva's thought has a unique potential for challenging and rethinking key concepts and fundamental presuppositions within modern medicine more generally. This conviction is the point of departure for this talk.


I will however start somewhere in between literature and medicine and with a quote from a quite famous medical record:


(Memory?) “I remember the very last days, of course.” (11 x 12?) “Oh, I have never been good at sums, professor, once I calculated myself out of 5000 kroner, another time I calculated myself a gain of 1000 kroner. Even though I worked as a shop assistant as a youngster.” (7 x 9?) “63” (What did your parents die from?) (Langfeldt quoted in Aastestad 2009)


This quote is drawn from the medical record of the Norwegian novelist Knut Hamsun. As you would know, Hamsun was interned at a psychiatric clinic after the Second World War as a consequence for his support to the Nazis in order to assess his mental state.


As the Norwegian professor of comparative literature Petter Aaslestad has noted, this report reveals “an impenetrable wall" between Hamsun's own "and his psychiatrist’s ‘vision du monde’” (36.) We can see from the quote a contrast between the mechanic questions of the doctor and the playful answers from the novelist. At the same time, this playfulness reveals a struggle. A struggle to keep his autonomy in the most literal sense, of course. But also a struggle to escape categorization. A struggle to keep his irreducible singularity, to be differently different.


The issue of singularity, otherness and difference is a conducting line throughout Kristeva's diverse authorship and most of her famous analytical concepts such as the semiotic and the symbolic, the abject, and of course strangeness or foreignness are related to this topic. In later years, this interest has also found a somehow more concrete and private expression in her work on disability.


In the article "A tragedy and a dream: disability revisited" (2013) Kristeva traces our understanding of difference and disability back to the Aristotelian concept of 'steresis', a lack or a 'privation of having'. Blindness is for instance conceived as an incompleteness, a lack of being, in one who by nature sees. This ontology of privation found echo in Christian humanism and inspired the Christian idea of charity as an act of completing or giving to those who have not: “various 'steriles', defective or poor, share powerlessness in suffering and passion, and in our com-passion with the 'lack of being', we establish 'good living', the ethics that will be Christian humanism”, Kristeva explains. However, as Kristeva argues, the idea of disability as a lack of being is not only visible in charity work but also "on the level of knowledge", "through the study of the 'empty' (pathologies)" through which "the sciences appropriate the complexities of the 'full' (normal functioning)". She develops this argument as follows: “Being is perhaps no longer the Divine, but we have replaced it with Biology, when we understand the disabled person as ‘lacking’ certain biological aptitudes”. Construed around the master dichotomy of having/not-having, medical discourse has developed into a machinery of dividing practices through which those who are different are reduced to what Kristeva refers to as "categories of difference". Their lack, their state of non-being, makes them different in the same way. As Kristeva points out in her Letter to the president: Medical discourse "blends all disabled people together without taking into consideration the specificity of their sufferings and exclusions". This way medical discourse represents an exclusion of the deepest kind, an exclusion of the “incommensurable singularity of each person”.


In this paper I want to develop this criticism further. I want to show how Kristeva’s criticism goes beyond the standard criticism of the “medical model” (as opposed to the social model). It is also a criticism at the level of knowledge and goes to the core of the medical concept of evidence. I will argue that modern medical discourse is construed around a notion of evidence which has excluded the subject and singularity. I will first outline the overall logic underpinning the current model of evidence-based medicine. Second, I will show how attempts within medical discourse to approach the individual are performed in a way that repeats the same fetish for generality and excludes singularity. Finally, I will argue that Kristeva’s theories lay the foundation for an alternative medical epistemology, an epistemology of the irreducible singularity of being.


The current construal of EBM is grounded in epidemiological and statistical reasoning. The ultimate method for creating evidence is the so called randomized controlled trial (RCT) in which patients are randomly assigned to a treatment group that is exposed to an intervention and a control group that is given a comparable intervention or a placebo. The aim is to determine whether the intervention is more effective on a group of patients than other interventions or lack of intervention. How the intervention works, when, why and on which patient is considered less relevant. The logic is that the larger the group the less such questions matter. Ideally, results from RCTs should be aggregated through the use of statistical meta-analysis and subsequently form the basis for clinical guidelines recommendations to clinicians with probability estimates of each outcome.


Central to the EBM framework is also the evidence hierarchy (often illustrated as a pyramid) with the highest-quality evidence at the top and the lowest-quality evidence at the bottom. On the highest level are RCTs and meta-analyses of RCTs and on the bottom case studies and anecdotal reports. This hierarchy corresponds with a movement from individual to group, from singularity to generality, from a variety of difference to categorized difference. The evidence grows into being and in strength through a process of purification through which singular differences are gradually ruled out and the only ontologies that remain when the top of the pyramid is attained are unified categories of difference (treatment or not treatment, diagnoses or no diagnoses etc.). In this sense, evidence-based medicine is the name of a process in which individuals are gradually replaced by conditions and singular difference by ‘categories of difference’.


Hence, medical evidence is by definition concerned with groups or what Kristeva refers to as ‘categories of difference’. For a claim to obtain status as evidence, it must be proven true for a large group of individuals (a population). Moreover, what is true for a group is also considered to be true for the individual patient. Evidence is supposed to be moved from group to individual (from bench to bedside) through so called “knowledge translation” which designates the “exchange, synthesis and ethically-sound application” of evidence. The process of “knowledge translation” hinges upon the mobilization of a chain of textual genres – starting with RCTs, followed by meta-analyses or systematic reviews (summarizing the scientific state of the art) and culminating in clinical guidelines, which prescribe manners of intervention in concrete cases. It is assumed that all these textual genres transmit the evidence in increasingly condensed and vernacular forms without threatening its universal and general character.


It is also fundamental to the medical concept of evidence that it is external to the clinical decision. David Sackett, one of the pioneers of evidence-based medicine described it as an “approach that integrates the best external evidence with individual clinical expertise and patients' choice”. Evidence is "external" to the individual case, external to the concrete act of relating and to the singular being. This evidence that is external and general is contrasted with clinical expertise and patients’ choice which are “individual”.  These two latter terms are, though included in the EBM framework, excluded from the concept of evidence as such. Evidence-based decisions are based on three sources: External evidence, clinical expertise and patients’ choices. Clinical expertise and patients’ choices should be integrated with evidence but do not count as evidence. 


This does of course not mean that modern medicine is not concerned with the individual. On the contrary, there are many knowledge practices within modern medicine which aim to put the individual at the center of care. Still, these initiatives tend to repeat the same mechanisms of exclusion. "Patient involvement" is a key word within modern medical discourse. WHO states for instance in a Policy Brief entitled “Where are the patients in decision-making about their own care? (2008) that “patients can play an important role in understanding the causes of illness, protecting their health and taking appropriate action, choosing appropriate treatments for acute episodes of ill health, and managing chronic illness. These roles must be recognized and supported” (WHO Policy Brief 2008). This overall policy is translated into three more specific interventions: 1) health literary, 2) shared decision-making and 3) self-management / empowerment.


The first of these three strategies “health literacy involves the ability to read, understand, evaluate and use health information to make appropriate decisions about health and health care”. On the one hand, the patient is here placed at the center of decisions about health and health care. On the other hand, in order for the patient’s voice to be valuable and to form the basis for “appropriate decisions” it must be framed by the right knowledge. The individual voice is thus not valuable as such but only as carrier of general knowledge or evidence. Only the literate voice, a voice that is docile and shaped by the medical discourse itself is included in decision making. The concept of literacy privileges a voice that is framed by rationality, logic, syntax, signification and representation - what Kristeva in her early work referred to as the symbolic aspect of discourse. At the same time, the call for literacy excludes - in Kristeva's words - "other aspects of “meaning” which are more than mere “significations”, the semiotic, such as rhythmical and melodic inflections of the suffering and singular speaking body, but also irrationality and resistance that mark out the illiterate and excludes his or her voice as "inappropriate" for decisions.


The second strategy, shared decision making is described and defended in the following way: “One of the most common sources of patient dissatisfaction is not feeling properly informed about (and involved in) their treatment. Shared decision making, where patients are involved as active partners with the clinician in treatment decisions, can be recommended as an effective way to tackle this problem. […]Evidence-based patient decision aids facilitate the process of making informed decisions about disease management and treatment”.


The aim of so called "shared decision making" is to involve the patients as active partners. At the same time, “shared decisions” are framed by “evidence-based patient decision aids”. Typically, the patient is presented to an option between treatment X and Y based on probabilistic estimates of outcome deduced from current research evidence. Hence, the interaction between the patient and the care giver is reduced to the weighing of evidence. The encounter is purely contractual governed by a “logic of choice” and a symbolic language through which the doctor provides "objective" information about the patient's condition. Once again, what is excluded from the encounter is the contactual aspect, the individual act of relating, the singularity of the patient's suffering and the semiotic elements of his or her speech.


The third strategy mentioned in the policy is to look “for ways to empower people to manage their own health and health care, by providing them with effective self-management support”. The concept of empowerment implies that good health starts with the singular choice of each individual. Still, the individual is encouraged to be singular in a specific way. Singularity is translated into autonomy. It should not be lived or expressed but “managed”. The individual that is included in medical decisions is an individual that is shaped by the medical discourse itself: a rational actor that manages his or her own health. Other forms of singularity are categorized as lacks that should be rectified through empowerment and 'self-management support'.


We see from the WHO policy that "patient involvement" is framed by general norms of standardized knowledge, rational choice and autonomous conduct. The individual that is included is an individual that fits with a category: the literate and rational self-managing individual. The singular is created in the image of the general.


Another knowledge practice which explicit aim is to put the patient at the center of care is so called health and symptoms assessment tools. A whole range of measurement instruments (quality of life scales, pain assessment scales etc) have been developed in order to categorize the subjective experiences of the patients as accurately as possible in order to prepare for individualized clinical decisions.


I will illustrate this practice using an internationally recognized assessment instrument used in treatment and care of cancer patients. The tool is called the Edmonton Symptom Assessment Scale (ESAS) and was introduced in 1991 as a method for regular assessment of symptom distress (Buera et al. 1991). It consists of a survey form designed to assist in the assessment of pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath. The severity of each symptom at the time of assessment is rated from 0 to 10 on a numerical scale. According to the user guidelines, the intention of ESAS is to “bring out the patient’s subjective experience of their situation” (IS-1529 2007, 18). It is based on the idea that the patient is an expert on his or her own suffering and that his or her subjective experience is the “gold standard” for treatment. At the same time, the ESAS represents a more standardized and supposedly more objective way of assessing and measuring each patient’s subjective experience and level of symptom distress. Its explicit aim is “to assess the current symptom profile as accurately as possible” (ESAS 2010, 3). In line with this purpose, the guidelines also stress the importance of a “valid use” of the form. The assessment should, for instance, always be done on the ESAS numeric scale. In other words, in order to be “valid” and “reliable” the assessment should be performed in a controlled manner. Subjective and pure patient experiences can only be grasped through a formal and standardized procedure, it is assumed. Hence, the form is designed based on the assumption that patients speak more accurately and adequately through a standardized voice allowing predefined categories to articulate their symptom distress. This also implies that certain subjective experiences are excluded as irrelevant or as noise. The form only allows for subjective differences that can be graded on a standardized scale. Other differences (such as type or quality of pain) are ruled out. A language that only emphasizes differences in degree of pain while excluding other experiences and differences is presumed to be more accurate or pure.


Ideally, the assessment should be performed by the patient him or herself. If the patient cannot participate in his or her own symptom assessment, the caregiver should assess the symptoms “as objectively as possible”, it is stated. In order to ensure objective assessment, a list of so called “objective indicators” is provided.


The following are examples of objective indicators:


Pain – grimacing, guarding against painful manoeuvres

Tiredness – increased amount of time spent resting

Drowsiness – decreased level of alertness

Nausea – retching or vomiting

Appetite – quantity of food intake

Shortness of breath – increased respiratory rate or effort that appears to be causing distress to the patient

Depression – tearfulness, flat affect, withdrawal from social interactions, irritability, decreased concentration and/or memory, disturbed sleep pattern

Anxiety – agitation, flushing, restlessness, sweating, increased heart rate (intermittent), shortness of breath

Well-being – how the patient appears overall (ESAS 2010, 2)


The whole concept of “objective indicators” implies that the caregiver’s subjective interpretation should be ruled out as far as possible. The caregiver’s subjective interpretation is a potential source of bias and a threat against accuracy. This threat can be counterbalanced through the use of “objective indicators.” Furthermore, it presupposes that symptom experiences have an objective existence independent of the patient’s own singular interpretations and descriptions of his or her pain. The form assumes that there is a pure pain experience that exists prior to language and categorization and that can be adequately measured given the right assessment tool. Nausea, tiredness, anxiety, and depression are considered to be distinct and clearly distinguishable conditions that exist independently of the categories we use to describe them. Such conditions are intuitively recognizable and do not necessitate interpretation, it is assumed. Symptoms such as pain, anxiety and nausea thus appear to be generalized and unambiguous phenomena. They change in degree but not in type. What type of pain the patient may feel, and whether it is the same today as it was the day before or is perceived as a different pain entirely, is not conveyed. Such information falls outside the form’s registering gaze. The form does not solicit information about the causes of fear and anxiety. Only the degree to which these emotions are felt is made interesting and relevant. Thus, it is also said that all anxiety and sadness can be treated equally. It is the level of anxiety that guides the intervention, not its underlying causes or nature. The singularity of the symptoms is ruled out.


We see that while the patient's subjective experience is said to be the gold standard for treatment, this subjective realm is assumed to have an objective and generalized existence beyond the individual's description of his or her singular sufferings. The truth about the individual's sufferings (the objective indicators) is to be found outside the individual. The individual's singular expression of his pain (the semiotic) is ruled out as noise and falls outside the definition of knowledge. Knowledge is strictly linked to a symbolic mode of expression, to clear and universal categories.


Some of the same subtle mechanisms of exclusion can be found in qualitative research within the medical area. The explicit aim of this type of research is to capture the singularity of the experience of each individual as well as relational aspects of health care delivery. Patton (1985) states that qualitative research “is an effort to understand situations in their uniqueness as part of a particular context and the interactions there” (p. 1)


In a recent paper, I have together with colleagues explored the principles of knowledge underpinning a selection of qualitative studies of rehabilitation interventions and assessed whether the articles adhere to their own stated principles. The point of departure for our study was a literature review of research about young adults with disabilities based on a systematic search in medical databases. After a preliminary screening, 104 publications were included in the study. Of these, only 12 were found to apply qualitative methods. While the quantitative papers were subject to a traditional medical research synthesis with the aim of describing the state-of-the-art within the field, we decided to approach the qualitative studies in a different way. Our review might be characterized as meta-epistemological because it analyzed the knowledge production of the research articles rather than the knowledge content as in a meta- synthesis. This implies that we were more concerned with how the articles create knowledge than what they create knowledge about. We were interested in the principles of knowledge creation presented in the articles, and how the articles aligned with these principles. Thus, we were concerned with the explicit and implicit understanding and structuring of knowledge—the epistemology— expressed in the articles.


We found that the articles demonstrate a tension between the qualitative principles stated in the articles and the way the results are presented. Here I can only provide a few examples:


Hooson, Coetzer, Stew, and Moore (2013) studied patients' experiences of return to work rehabilitation following traumatic brain injury. They took on a phenomenological perspective emphasizing that the objective of their analysis was to elicit the individual’s unique perception and understanding of the phenomena (p. 22). However, in the presentation of the results they were primarily concerned with the quantitative occurrence of qualitative statements: “Most of the participants (9 out of 10) . . .” (p. 28), “. . . all participants . . .” (pp. 22–23, 25, 28, 31–32, 34, 36), “All 10 participants viewed . . .” (p. 26), and so forth. Their intention to explore unique experiences where thus partly undermined by an emphasis on categories of experiences and their frequency.


Self, Driver, Stevens, and Warren (2013) also focused attention upon the individual participant and the explicit purpose of their study was to determine physical activity (PA) knowledge, attitudes, intentions, and barriers among individuals . . .” (p. 22). This aim was however partly undermined by the choice of group interviews as a method. Furthermore, in the presentation of the results, the attention clearly glided toward groups of statements and countable meaning units. The authors used for instance “Meta Codes, Codes, and Representative Quotes” (p. 27) in a table with frequency counts. This emphasis on frequency was also reflected through expressions such as “. . . nearly every participant demonstrated . . .” (p. 29), “most participants” (pp. 31, 33–34), and “The majority of . . .” (pp. 24, 28).


Although the articles consider qualitative knowledge to be something distinct from quantitative knowledge and their explicit ambition is to capture singular experiences and processes, the results are presented in a way that in a sense deconstructs these ambitions. The responses were collected, studied, and ordered and similar statements were grouped, categorized, and combined in such a way that the various singularities could be presented in synthesized form, category by category. This occurs in a number of different ways in the articles, for example, through classification into overarching themes, through models/forms, and different methods of quantifying experiences and statements. Because the articles focus on the frequency of a given experience or process, they give the impression that the higher the frequency, the more interesting the finding. The authors performed what can be understood as a quantified weighting of the qualitative data. In fact, the articles never draw attention to the participants’ experiences or the rehabilitation processes as unique. Rather, the singular experiences and processes gain value by not being unique, but representative of a larger group of participants.


In the process of capturing and presenting the unique subjectivity of the participants, what is individual, unknown, and alien is transformed into categories that pretend to be universally valid and recognizable. The authors thereby risk marginalizing the essence of being different—that which does not allow itself to fit into established systems of categories. While the studies explicitly analyze experiences of being different, they marginalize the differences of being different by only highlighting general characteristics of the feelings and not their unique expressions.


By virtue of their stated qualitative research principles and choice of qualitative methodology, the authors wish to capture and provide space for singularity, subjectivity, and thereby difference. However, the subjectivity and singularity that people with disabilities represent are refined on the path toward scientifically created knowledge and “truth.” Singularities that resemble other singularities tend to be considered more important than the one that is unique. This seems paradoxically to create a singularity which subjects each one of the participants to the weight of the aggregated uniqueness of the many (Foucault, 1971; Foucault & Faubion, 2002).


One might claim that the young adults studied have been segregated as scientific objects of study by virtue of what Kristeva described as the deepest form of exclusion—They do not fit into the categories set up by society (Kristeva, 2006). In this way, they are pushed out—categorized as not fitting into the categories. Their exclusion is an admission ticket to inclusion in research, which will study their path to re-inclusion through rehabilitation. The young adults with disabilities are studied as problems to be solved. The research categorizes their problems as well as how these problems are experienced or appear to be solved by the interventions. Their differentness is almost never regarded as a resource in the selected studies. Rather their differentness is viewed as expressions of a need for more support in terms of return to work rehabilitation (Hooson et al., 2013), more involvement and coaching (Glavare et al., 2011) , more physical activity (Self et al., 2013), a need for increasing the patients’ ability to set rehabilitation goals, or the master-solution to almost any challenge: more research (Draaistra et al., 2012; Todis &Glang, 2008).


To sum up so fare, medical discourse is governed by a logic of steresis that classifies singular difference into categories of difference characterized by a general lack. The only differences that are visible to the medical eye are groups of differences, categories of non-being (disabilities, pathologies) that can be clearly distinguished from corresponding categories of full being, i.e. normality. This divide, this categorization is what Kristeva refers to as the deepest form of exclusion. As I have tried to show, medical knowledge is structured around these dividing practices, around a machinery of categorization. This is the epistemological face of the exclusion Kristeva is talking about. Medical knowledge is by definition knowledge about categories, about groups of difference.


As shown, this does not mean that there are not individualizing tendencies in evidence-based medicine. In many ways EBM embraces the individual – but in a way that marginalizes singularity. Individualizing knowledge practices such as patient involvement, experience assessment and qualitative health research are undermined by an attempt to make the singular difference fit with general categories of difference. The one is reshaped in the image of the many (through standardized measurement, patient education and management training) – and then treated accordingly. The individual is conceived as an exemplar of a model – as a general singular.


Kristeva provides an alternative epistemology, an epistemology of the irreducible singularity of being. With reference to Duns Scotus she claims that "truth is not in the universal idea, nor in opaque matter, but in 'a this one', this man here, this woman there". Instead of reducing those who are sick or disabled to “objects under treatment” she builds her epistemology on the emerging subject. And What is the subject?, she asks. She answers: “That which in a man or woman remains open to a search for meaning and sharing.” And as subjects in this sense, we are all essentially vulnerable, according to Kristeva. We are all confronted with “the limits of life, with the fear of deficiency and physical or psychic death,” Kristeva writes. She therefore refutes the idea of an essential divide between those who are lacking and we who are not. She insists that the experience of an essential lack, of a non-being, is not something that distinguishes us that are in good health from those who are disabled or sick. Rather, it is something that bounds us together: “Not necessarily because “it could happen to anyone,” but because it is already in me/ us: in our dreams, our anxieties, our romantic and existential crises, in this lack of being that invades us when our resistances crumble and our “interior castle” cracks.”


How can medicine incorporate an epistemology of singularity and sharing, a conception of evidence and truth that does not depart from a “universal idea”, a general category of difference, but starts with “’this one', this man here, this woman there”? Is such a medicine even possible? I believe that it is. And I believe that it has roots in evidence-based medicine itself and in its excluded other.


One of the most influential texts in the establishment of the paradigm of modern evidence-based medicine is the book Effectiveness and Efficiency, written in 1972 by the British epidemiologist who has given his name to the Cochrane Collaboration, Archie Cochrane. This book is often referred to as the first sketch of what was to become EBM: a celebration of RCTs as the gold standard of medical evidence. However, this is at least partly a misreading of Cochrane’s text. Cochrane draws a distinction in his text between two aspects of medicine: cure and care. Health care is supplying, he insists, “on the one hand therapy, and on the other board lodging and tender, loving, care.” He goes on stating that he will mainly focus on the cure aspect out of practical reasons: ‘I have devoted most of the space to an analysis of effectiveness and efficiency in the “cure” section, because so much more is known about it’. He focuses on cure because he considers that at the present stage more was known about it. Later proponents of EBM have interpreted Cochrane’s practical delineation as a scientific demarcation: Cure is emphasized because more can (and should) be known about it. Knowledge about cure can be based on groups, categories of difference. Care is considered to be individual oriented and thus falls outside the scope of medical evidence. This was not Cochrane’s intention. Cochrane did not consider studies about the effectiveness of a cure as the only legitimate form of medical knowledge. On the contrary, he considered cure and care as equally important dimensions of medical knowledge though knowledge of different kinds. While the first is group oriented, the second is individual and value oriented, based on personal experience and a relationship to the singular patient and his sufferings.


Still, to Cochrane, care is not compassion for a lack of being as Kristeva warns us against. Rather, it is driven by a democratic motivation and is profoundly linked to equality and sharing. More than anything else care is about listening, listening to the irreducible singularity of being. This is the concept of evidence that seems to be lost within modern EBM: an evidence of proximity, of sharing; an evidence that listens.


By recapitulating this double origin of EBM one might perhaps start building a medical epistemology that embraces singularity. This does of course not imply to refute generalized knowledge and thereby cause what Kristeva refers to as “a perverted interpretation” denying the need for adequate diagnostics and treatment. The point is rather that this knowledge must be supplemented and constantly questioned by a second knowledge, a knowledge that acknowledges the “incommensurable singularity of each person”.




Eivind Engebretsen, University of Oslo

Stockholm, Sweden, 2016

The Kristeva Circle




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