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Dossier thématique

The invention of disability

Normativity, truth and power in a biopolitical concept
L’invention du handicap: normativité, vérité et pouvoir au sein d’un concept biopolitique
Melania Moscoso Pérez
p. 31-42

Résumés

L’anthropologue Roy Wagner a défini l’invention comme une manière de contester l’hypothèse selon laquelle la vie ordinaire est en grande partie déterminée. Dans ce texte, nous explorons la notion de handicap comme notion ordinaire et comme notion conventionnelle, en mettant en évidence le contraste avec la notion de normativité vitale proposée par Georges Canguilhem dans la section II du Normal et du pathologique, qui se rapprocherait de la notion d’invention que Wagner développe. Dans cette seconde approche, le concept de normativité vitale décrit les efforts d’adaptation de l’individu, qu’il soit avec ou sans handicap. Alors que dans la première vision du handicap, collective, la normalisation contribue à l’altérisation du handicap (la normalisation contribue à constituer le handicap comme altérité), l’approche de l’invention de Roy Wagner, si elle était appliquée au handicap, mettrait l’accent sur la créativité individuelle. Nous défendons l’idée que cette vision différenciée du handicap, tout comme le concept de normativité vitale de Canguilhem, ouvre de nouvelles voies pour l’émancipation du handicap/des personnes handicapées au-delà du champ des représentations.

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1The anthropologist Roy Wagner states in The invention of culture (2016) that all human cultures are characterised by establishing their own division between nature and culture. What the American anthropologist was referring to is the persistent tendency of groups of humans to divide reality into two orders: that which is fixed and in some way pre-established as “natural,” and that which is subject to modification or cultivation by humans as “cultural” or, if you like, artificial. Whilst traditional peoples and peasants consider that languages, traditions, family relationships and spiritual matters belong to the fixed order, in western democracies we have dedicated many years of our lives to the cultivation of the spirit in educational institutions, inventing new forms of living together and openly throwing ourselves into the learning of new languages.

2As far as the human body is concerned, this is classified differently depending on the culture. Many Amerindian people see the body as apparel, subject to transformations and metamorphosis, whilst in the West we tend to perceive it as part of our identity, or as one of many resources belonging to nature, open to being exploited for personal ends or to the preservation expressed in youth or functionality. Our western societies have elaborated a complex medical proceduralism dedicated to the cause of preserving health and longevity. As Michel Foucault says in Section V of Volume One of The history of sexuality, entitled “Right of death and power over life,” biopower – as opposed to that sovereign power symbolised by the sword which consisted of killing or allowing to live – is outlined as a set of tools and knowhow aimed at the best management of life, of “reinforcement and control, of vigilance, of an increase and organisation of the forces to which they are subjected: a power aimed at producing strengths, at making them grow and at organising them rather than hampering or destroying” (Foucault, 2019: 183).

3Our productivist concept of the body has given rise to a complex scientific-technical system aimed at the preservation of health and at longevity, along with the elaboration of standards of normality and the identification of statistical deviations in the physical-psychological constitution. Foucault, and his thesis director Georges Canguilhem, showed how the classification of living things into a continuum that ranges from the normal to the pathological is a historically contingent creation from the 18th century. This notion converts the bodily differences previously expressed as botanical classifications, in order to arrange them in a gradation in which they lose their specific difference and become anomalies, by excess or default, of a healthy state, which, owing to its statistical frequency, is labelled as normal. This dogma of the real identity of the normal and the pathological – as Canguilhem called the arrangement of the diversity of living things into a continuum – became what Michel Foucault defined as a regime of truth, “I understand truth to be the set of procedures that allow us to assert, at every moment and for each one, statements that will be considered truthful” (Foucault, 1999: 15).

4In this text, we will start using the concept of culture as an “analytical tool for the study of disability” (Waldschmidt, 2018: 68) in order to characterize disability as a biopolitical device, and to explore the concept of vital normativity as a way to further including the experiences of people with disabilities in disability theory, going beyond the medical model/social model divide.

5In the first section we explore the concept of culture as it has been used in disability studies within the framework of anthropological theory and point out its similarities with Michel Foucault’s concept of dispositif. In the second section we point out some of the pitfalls of the social model of disability and strong constructivist approaches, namely the evacuation of phenomenological experience (Shakespeare, 2006; Ortega, 2014). I suggest incorporating Canguilhem’s concept of vital normativity as devised in The normal and the pathological. In doing so, we suggest that a realist constructivist approach as defined by Francisco Vázquez García can be helpful in reconnecting disability studies to the lived experiences of disabled people. In the third section, entitled “the disabled subject in disability studies: Foucault and Canguilhem,” we suggest that the concept of vital normativity could work as a bridge between the medical and the social model of disability. In it we discuss the conceptions of biopolitics at work in current disability studies, such as Robert McRuer and David Mitchell-Sharon Snyder’s work. In the concluding remarks we put forward the idea that both the medical model and the social model have objectified disability – the first one making it an object of science, and the second exploring its implications in the realm of representation (popular culture) – and we call for an approach within disability studies that incorporates Roy Wagner’s basic tenet, namely that of invention; one that extends “innovation” to “the whole range of thought and action,” (Wagner, 2016: 34) instead of focusing on one that fixes the concept to the realm of representation.

Disability as an invented concept

6In the classical, now somewhat outdated anthropological conception of the term, culture provides a set of shared conventions that allow people to communicate and make sense of their lived experience, as well as to control the various contingencies that occur in our everyday lives. As Tylor’s classical definition beautifully puts it, culture is “that complex whole which includes knowledge, belief, art, law, morals, custom, and any other capabilities and habits acquired by man as a member of society” (Wagner, 2016: 23).

7Although disputed firstly by postmodern anthropology, and more recently by the defendants of symmetric anthropology such as Roy Wagner and Eduardo Viveiros de Castro, this concept of culture as a set of conventions insidiously informs the work of the advocates of what we know as “the cultural model of disability,” that disability is a set of exclusion practices that misrepresent the life experience of people with disability and preclude social participation. An example of this is German disability scholar Anne Waldschmidt who endorses a concept of culture that denotes the totality of “things” created and employed by a particular people or a society, be they material or immaterial: objects and instruments, institutions and organisations, ideas and knowledge, symbols and values, meanings and interpretations, narratives and histories, traditions, rituals and customs, social behaviour, attitudes and identities. If cultural studies uses such a general understanding of culture, it will not only focus on symbols and meanings, but investigate the relations between symbolic (knowledge) systems, categorization and institutionalisation processes, material artefacts, practices and “ways of doing things,” and their consequences for individual members, their social positions, relations and personal identities” (Waldschmidt, 2017: 71). This is close to what Foucault defined in an interview given in 1977 as a dispositif in The confessions of the flesh:

a thoroughly heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements, philosophical, moral and philanthropic propositions – in short, the said as much as the unsaid. Such are the elements of the apparatus. The apparatus itself is the system of relations that can be established between these elements. (Foucault, 1977: 194-5)

8The underlying concepts of culture that many disability studies scholars have resound with this reconstructivist concept when they use disability as a term to make sense of human diversity. As G. Thomas Couser (2005) puts it, “disability is difference with a difference.” On the one hand, inner diversity of the collective that does not solidify easily into one monolithic expression; on the other hand disability is such that it often trumps other minority identities such as race or sexual orientation, therefore defining the master status of the person (Couser, 2005: 97). Drawing from Foucault’s analysis, some of the defenders of the cultural approach to disability, most notably Shelley Tremain (2017), define disability as an apparatus that, much like the Foucauldian device, “as a form of unequal power produce an array of disciplinary norms about proper social behaviour and interaction, modes of communication, rationality, emotional self-control, psychological resilience” (Tremain, 2017: 7).

9The dispositif rightly describes how disability puts together diverse elements to arrange lines of visibility and lines of utterance, as Deleuze put it (Deleuze, 1992: 167), in order to make them appear as objects. Constructivism, thus, has done a good job in making the conventional nature – i.e. normative nature – of disability explicit, and is often described as an intricate web of social arrangements, economic interests and educational practices by which people give meaning to the world around them. While the cartography of the discourses, institutional practices and exclusion practices that keep disabled people disenfranchised in our liberal democracies has been pretty well described, the historical beginnings of the category of disability itself have not received due attention from disability scholars. We still have to look to science historians to get some idea of how the concept of disability was invented. To talk about disability in a Foucauldian sense implies asking oneself how it has become an object of study for scientific thought. As Foucault would put it: “by a set of discursive practices that makes something enter into the play of truth and false, and constitutes it as an object for thought.” (Foucault, 1999: 371).

10The work of French epistemologist Georges Canguilhem lays the foundation for a genealogy of a category such as disability from the scientific point of view Foucault described in his quote above. In doing so, we follow Spanish scholar Francisco Vázquez García and propose that both Foucault and Canguilhem espouse a “normative realism” (Vázquez García, 2018: 102). For this purpose we will outline a genealogy of the category of disability from Canguilhem’s masterpiece, The normal and the pathological, along with the collected essays contained in Knowledge of life, to move further towards Foucault’s Society must be defended in order to draw its implications for the concept of biopolitics, which I will attempt to do here:

11Prior to the category of disability in the late 19th century or the early 20th century, abnormal embodiments were believed to belong to the realms of monstrosity. From its primary meaning of admonition in the Middle Ages, the notion of the monster served in the baroque era to show the transition between species “natura non facit saltus as Leibniz would put it, to show that nature does not proceed by leaps and bounds, and thus to show the unity in the great chain of being.

12In the 18th century, teratology would present itself as a science that ascertains the relationship of the individual with its type. It was not until the end of the 18th century that the attempt to bring abnormal specimens closer to their type would be considered a national endeavour. From tsar Peter the great of Russia to the Wunderkammerthe cabinets of curiosities – the exhibition of abnormalities was rendered as part of the fight against superstition. By the end of the 18th century, a series of strategies would be developed whose aim was to bring under control everything that affected humans as a species: birth, reproduction and death; control of the population, or, as Foucault would call it from 1976 – biopolitics.

13Human life had become a major concern of the modern State. Biopolitics uses standards provided by science to introduce caesura into the human population, that divides it into that which should live and reproduce and that whose multiplication should be avoided; on the outer most boundary between that which should live and that which it is better to allow to die, as occurs with scientific racism.

14However, it was Canguilhem’s work that described how biologists, physiologists and doctors drew up life regulations, primarily supported by survival, subjecting them to experimental quantifications. The norm, according to the definition given by Canguilhem in The normal and the pathological, is “that which leans neither to the left nor the right; hence it remains right in the middle” (Canguilhem, 1976: 71). The process of converting normality and pathology into gradations of the same continuum spanned the whole of the 19th century and was named the dogma of the real identity of the normal and the pathological.

15In fact, in the fifth chapter of his masterpiece The normal and the pathological, Canguilhem warned of the dangers of superimposing external parameters onto life rules. It can be used both for protecting individual and collective health and life, as well as for the rationalisation of exclusion and killing through the identification of an internal enemy – the weak and the incapable.

16Over the last few years a number of academic studies have been carried out in relation to Canguilhem’s work. Pierre Macherey and Guillaume Leblanc have stressed the importance of the norm in Canguilhem’s work and its importance in the work of Michel Foucault. While Macherey and Leblanc’s theses will prove useful later on in the text, I now want to draw attention to the work of Spanish scholars Francisco Vazquez García and Gonzalo Velasco Arias, whose works Vitalismo y ciencias humanas and Genealogías de lo biopolítico: normalidad y patología en el momento foucaultiano prove the seminal importance of Canguilhem’s work on normativity in Foucauldian biopolitics.

Vital norms and disability: medical intervention and the imposed norms

17The debate about disabilities has been a confrontation between two opposing views: the medical model that, stemming from the 19th century has espoused the view of disability as a personal tragedy that should be cured or corrected through medical procedures, subjecting it to medical expertise; and the social model that equates the life experience of people with disability to the oppression faced by people of colour or different sexual orientation. As has been pointed out, the social model of disability erases the experience of physical limitation by turning a label into a badge (Shakespeare, 2006: 74). As Tom Shakespeare astutely points out in Disability rights and wrongs, making disability an identity as in the social model leaves disability in the same pre-discursive position as the medical model does. Both models share a concept of the body as indifferent to values, separated from culture, and fail to address how inequality and embodiment are articulated in the field of experience.

18As Francisco Vázquez García has pointed out (2018), the work of Georges Canguilhem provides us with conceptual tools to think of disability beyond the strictures placed on it by both the biomedical and the social models. His major work The normal and the pathological, published in French in 1966, comprises two essays: the first one, from 1943, “Essay on some problems concerning the normal and the pathological,” covers the aforementioned dogma of the real identity of the normal and the pathological through the work of Auguste Comte and the work of the father of experimental medicine, Claude Bernard. Canguilhem describes how, through their professional practice, physicians like Francois Broussais and surgeons like René Leriche created a new area of knowledge – physiology – that postulates that the normal and the pathological are different gradations of the same quality, namely health or vitality.

19The first part of the first section of The normal and the pathological is thus devoted to discussing the dogma of the real identity of the normal and the pathological. “What distinguishes nineteenth-century medicine (particularly before the era of Pasteur) in relation to the medicine of earlier centuries is its resolutely monist character.” (Canguilhem, 1989: 103). Canguilhem insists that there is not a unique normativity in nature that would cast specimens as deviants, but a constant production of anomalies that only in their interaction with the environment would they come across as pathological or adaptive. Therefore, Canguilhem rejects any kind of “metaphysical realism” that would attempt to render the outside world as it is (Vázquez García, 2018). Instead, in the second part of the first section “Do sciences of the normal and the pathological exist?” he supports a Kantian inquiry to draw out the relationship between the living being and its concepts, according to Leblanc (2002), underlining the “conditions of possibility of biological individuality” (LeBlanc, 2002: 46).

20Aside from the intellectual influence of Francis Courtès, maître-assistant at the Montpellier faculty of letters and social sciences, whose speciality was Kant, it is hard to overestimate the influence of Foucault’s History of madness, and The birth of the clinic in the theoretical framework of the second part of The normal and the pathological: the new reflections on the normal and the pathological, which would continue the investigation that had begun twenty years earlier. From 1963-1966, Canguilhem would support a constructivist view of reality, meaning that scientific knowledge will always derive its objectivity from the construction, mediated by the faculty of judgment, of the objects of cognition, which by no means implies the direct mirroring of what exists independently of human perception. As he writes in Du concept scientifique à la réflexion philosophique, philosophy is concerned more with normativity than with the proper relationship between being and its concept. Canguilhem’s stance would oppose both the “worshipper of facts” that would derive social norms from biology, and the extreme constructivists who deny the biological facticity of bodily processes.

21As Vázquez-García points out, Canguilhem favours a realism that is both constructivist and aims to integrate abstraction with reality as it stands in the judgement of the physician, thus making it a far from objective scientific concept. In his new reflections on the normal and the pathological, Canguilhem attempts to devise a new articulation between the vital and the normal. Canguilhem’s normative realism is not covered by either the metaphysical realism of the physicians of Bernard’s experimental medicine, or the constructionist relativism of disability studies that denies the extrapolation of scientific truth outside its community of practice. Instead, Canguilhem’s normative realism purports that reality is a regulatory threshold in the sense that it “limits the free constructions of thought” (Vazquez, 2017: 102).

22In this new articulation he would reject subordinating biological normality to social normality, due to the rejection of the mechanism. The attempt to redirect biological normality to the service of productive needs will always result in militarism and automation, the militarisation and commodification of people. But more importantly, Canguilhem would stress the vitalist tenet that life itself is normative, since normativity is “the sum of functions that resist death,” all that helps the organism to keep its potency and maintains the homeostasis, but also what allows differentiation (i.e.: biological individuality), since living beings renew themselves through the options they take. Therefore, as Canguilhem wrote in the second chapter of part two “Do sciences of the normal and the pathological exist?” in the first section of The normal and the pathological entitled “A critical examination of certain concepts. The normal, anomaly and disease: the normal and the experimental”: “that the fact that a living man reacts to a lesion, infection, functional anarchy by means of a disease, expresses the fundamental fact that life is not indifferent to the conditions in which it is possible, that life is polarity and thereby even an unconscious position of value; in short, life is in fact a normative activity.” (Canguilhem, 1989: 126).

23Since vital normativity allows us to redraw the distinction between the normal and the pathological in a way that the healthy or normal man is able to institute new norms in his dealings with the environment – a way that is not available to the sick or the disabled that is often restricted to one norm only. Canguilhem is not only opposed to metaphysical realism, but also decries a purely constructivist take on embodiment and illness like the one that some disability scholars seem to defend. Disability would be a state of reduced normativity. Medical intervention should aim to enhance or foster the ability of the disabled to create new norms, instead of subjecting them to standardized criteria.

24The concept of vital normativity is therefore a bridge between the competing views of the medical model and the social model, since it allows the bringing together of medical efforts to improve the living situation of disabled people without reducing them to objects to be normalized with medical standards. Canguilhem would agree with American bioethicist Erik Parens that a “binocular perspective” on disability is called for; an in-depth comprehension of disability that instead of pitting people who are for disability – namely people with disabilities – against people who are against it, would enlarge the meaning of impairment in the individual’s experience and social life. It would reclaim the experience of functional limitation from the medical standpoint that would reduce it – as disability rights activists have pointed out – to personal tragedy. In fact, it comes down to enabling good choices – those that allow people with disabilities to flourish:

if we show each other respect at the beginning of the day by treating each other as objects – in the sense that we help each other think about the forces that are determining our preferences – at the end of the day we show each other truly informed choices. (Parens, 2017: 147)

25Canguilhem himself expressed it in a very similar way in the World Congress Biologie et devenir de l’homme, held in the Sorbonne in September 1974. His talk “Qualité de vie, dignité de la mort” stressed that the disabled are often prevented from adjusting to the environment by their own means, therefore interfering with their autonomy. Medical practice may come in handy in order to improve this adjustment but must avoid inducing “stigma and frustration”; the disabled person is “disenfranchised” by an environment that does not acknowledge his right to difference. Canguilhem’s take is very close to that of Erik Parens in that it acknowledges a “medical moment” in order to guide or support the disabled person’s own normativity.

The disabled subject in disability studies: Foucault and Canguilhem

26Not only did Canguilhem anticipate by several decades the posture of the Hastings centre of Bioethics, but, as recent academic study on Canguilhem has shown (Macherey, 2011; Leblanc, 2002; Velasco, 2013), it has also proved the seminal influence of Canguilhem in the Foucauldian concept of biopolitics. More specifically, Velasco (2013) insists on the structural importance of the division between the normal and the pathological not only in Foucault’s theory but in “the governing, administering, and taking charge of humans as living beings as biological or bare life” (Bazicaluppo, 2006: 16).

27Within disability studies, biopolitics has been interpreted as a disciplinary regime whose objective was to enforce abnormal bodies to fit into abstract conventions of society, or to justify practices of institutional normalization, within which disabled people have been seen as objects. Such is the case of Shelley Tremain (2005) and Robert McRuer (2010) who derive their interpretations from the more genealogical Foucault and tend to understand disabled people as sheer victims of institutional procedures.

28However, an in-depth reading of Foucault suggests that the extreme reconstructivist take on disability “that considers disability a socially constructed identity category, like race, class, gender, and sexuality” (Sandahl, 2003: 52) does not conform to Foucaldian tenets.

29According to the entry “Michel Foucault” in the Dictionnaire des philosophes written by Foucault himself, his general project is to reconstruct the correlative objectification and subjectification in the jeux of verité. How disability became an object of knowledge is a process that can be traced back through epistemology and the history of science. How disability became a specific mode of subjectification in our culture implies tackling how embodiments that defy the norm are subjected to technologies of the self, or, as some more recent scholars have proposed (Contino, 2013; Cayuela, 2017; Moro, 2002) how acknowledging disability is a dispositif.

30However, as many of the titles produced within disability studies show, the main task in the discipline has been in dealing with representation in the media and popular culture. This is also the case, for instance, of David Mitchell and Sharon Snyder, who in their book Narrative prosthesis insist on the place that disability takes in fiction: either as the evil disabled or as a preternatural creature endowed with some natural wisdom. And they conclude that:

Because representations of disability tend to reflect the medicalized view that restricts disability to a static impairment entombed within an individual, the social navigation of debilitating attitudes fails to attain the status of a worthy element of plot or literary contemplation. (Snyder & Mitchell, 2000: 19)

31The focus of disability studies within the realms of the symbolic has been prevalent in disability studies. With a plethora of articles dealing with subjects such as disability in popular culture, mass media and literature, and being the title one of the main journals in the field – Journal of cultural and literary disability studies, one of the focuses of the discipline has been how to make the experience of disability intelligible to society at large. This effort has revolved, then, around the analysis of how this experience has been conventionally rendered in popular culture and the mass media. As Roy Wagner would write, disability studies has been the scholarly endeavour that aims to trace conventional associations of disability, meaning “that relate to one another within the field of discourse (language and mathematics are the obvious examples) and form cultural ‘sets,’ like sentences, equations, tool kits, suits of clothes, or city streets” (Wagner, 2016: 38). How disability abstracts itself from the experience of visually impaired people and poliomyelitis survivors has been the task of physicians throughout most of the 20th century. Social workers and third sector experts eventually joined this discourse, adding a dimension of social justice to it. As we have seen, the dogma of the real identity of the normal and the pathological gives sense to abnormal embodiments, placing them in a continuum between the normal and the pathological: medical discourse thus “objectifies its disparate context by bestowing order and rational integration upon it” (ibid.: 39), as do social workers when they target a collective as deserving public aid. Both physicians and social workers collectivize individual differences as cases of a larger group, which, in turn is singled out as deserving some kind of special treatment. Whether it is a “special needs” child, or an adult going through accommodations at work, both the personal identity of the individual going through the process, as well as the larger setting that accommodates the experience, significant transformations take place that are normative in nature. They are normative not only in the sense that they are the condition of possibility of meaningful human interaction, but also in the sense that they are moral, i.e. “is a kind of meaning, a meaning with direction, purpose, and motivation” (ibid.: 37), whose purpose is to force agents to regulate them, as Durkheim would put it, through something other than their ego. It is this idea of the subjection of the ego to something larger than itself that lurks in some of the later Foucauldian texts such as Le gouvernement de soi et les autres, in which being a subject means to belong to an epochal moment (Macherey, 2011: 95). This very idea of subjection takes us back to the second part of Michel Foucaultʼs “general project” as stated in the Dictionnaire des philosophes to produce “a history of the different ways of becoming a subject in our culture” (Morey, 1990: 20). As Foucault himself wrote in the Dictionnaire des philosophes, “il s’agit en somme de l’histoire de la ‘subjectivité’ si on entend par ce mot la manière dont le sujet fait l’expérience de lui-même dans un jeu de vérité où il a rapport à soi” (Foucault, 1984: 943).

32How did disabled people come to be what we are in this society? This would be the Foucauldian take on disability. But, does this mean that disability is a purely reconstructivist endeavour? Again, this depends on what we understand by objectivity. As we have seen, Canguilhem opposed metaphysical realism that attempted to know the noumena, in favour of a Kantian construction of objectivity as described in the second part of Transcendental doctrine of method in The critique of pure reason – the ability of the subject to gather sensations from objects. The fact that disability is constructed, i.e. as a result of the action of human understanding, does not imply that it is irrelevant or that its relation with inequality or oppression is arbitrary. Rather, it means that for such a category as disability to be meaningful it has to observe some normative prescriptions as to where it is to be applied. As Roy Wagner would put it, ideas of functional limitation as being central to the idea of disability may be an illusion but a necessary illusion when it comes to an idea such as disability making sense. In the words of Wagner himself:

the idea that some of the recognized contexts in a culture are “basic” or “primary,” or represent the “innate,” or that their properties are somehow essentially objective or real, is a cultural illusion. Yet it is a necessary illusion, as much a part of living in and inventing a culture from the “inside” as the anthropologist’s assumption of hard and fast rules is a prop for his invention of the culture from the “outside.” (Wagner, 2016: 38)

33The idea of the functional limitation is a “necessary illusion” for making disability an intelligible concept, an idea that can convey the experiences of disabled people to the non-disabled in meaningful ways. The necessary illusion allows people with disabilities to receive the accommodations they need. As Jill C. Humphrey puts it:

It’s very convenient for people with apparent disabilities or impairments to operate a social model which says. “We don’t want to discuss things in terms of ‘impairments’.” Because these people have got priority anyway, and impairment-related provision. The trouble with it [the social model] is that it’s very difficult for people with learning difficulties or other conditions which are not catered for to raise their concerns as things which need dealing with on a service level, without feeling that they’re breaking the law and talking about impairment. (Humphrey, 2001: 66)

34As has been pointed out, the social model has disregarded the specific experience of limitation and suffering. With the exception of Wendell, phenomenological accounts of limitation have rarely been covered by disability studies, being left in the hands of professionals and the activism of family members (Ortega, 2014). In the 2000s, the so-called cultural model of disability has come to the rescue of the social model. Its object is no longer oppression as the universal experience of disability, but the set of patterns of interpretation of difference which, on the basis of more or less explicit assumptions of health, functional wholeness and normality, allow people to be classified on a continuum from ability to disability. The cultural model takes on the task of tracing the intertwining of physical-psychic constitutions and inequality throughout the wide variety of life situations, institutional practices and scientific discourses that the social model had left pending. Drawing on the theoretical arsenal of literary criticism and queer theory, and having established itself as an academic discipline, disability studies has established a radical constructivist view of disability that has ended up eliminating all traces of limitation or deficit in the experience of disability, focusing instead on its representation in the mass media, literature and popular culture.

Conclusion

35So far, in this text we have made the case for disability as a biopolitical concept. In describing the biopolitical facture of disability, we have incorporated the Foucauldian assumption that the protection of life could become a scientific project of destruction of that life, as in scientific racism showing the most deleterious aspects of modernity. We have suggested that both the biomedical concept of disability and the social model share this biopolitical ambiguity. Moreover, we have proposed that the concept of vital normativity is therefore a bridge between the competing views of the medical model and the social model, since it allows the bringing together of medical efforts to improve the living situation of disabled people without reducing them to objects to be normalized with medical standards.

36We would like to stress the fact that the so-called critical disability studies or cultural model of disability did not circumvent the dead ends of the social model as Tom Shakespeare and others have described. The exploration of the concept of culture that this model espouses, lies – as Waldschmidt points out – in an anthropological conception of culture, that, in the words of Roy Wagner, objectifies it. Paraphrasing Wagner, one could say “the objectification of disability has overburdened the concept of disability, attempting to capture all forms of exclusion,” and, as he went on to say, by regarding culture disability as a scholarly artefact, it has become: “totally predicated, it is rule, grammar and lexicon, or necessity, a complete perfusing of rigid form and paradigm throughout the range of human thought and action.” (Wagner, 2016: 29).

37What then would the subjectification of disability imply? How to capture the subjective experience of disability without framing it in the frame of the real identity between the normal and the pathological deplored by Canguilhem? What if we took the difference that disability implies as a qualitative difference or as a differentiating symbol that, instead of creating a caesura among men would merge the subjective experience with the object? While Foucault’s subjectivity was to a great extent the product of disciplines, hesitating between “criptovitalism and moral decisionism” (Vázquez-García, 2018: 118-9), vital normativity allows us to consider disability as an invention in the sense Roy Wagner expressed, having the effect of “merging the conventional ‘subject’ and ‘object,’ transforming each on the basis of the other” (Wagner, 2016: 54). Obviating the context of disability, therefore, permits an inquiry into the meaning of disability as an expression of vital normativity that resists normalization. While from the collectivizing, conventional standpoint, functional limitation becomes a necessary illusion, the differentiating standpoint allows us to see disability as a case of individual creativity. The standardization of the human body that gave rise to the dogma of the real identity of the normal and the pathological insisted on assimilating the difference that is disability. Inventing disability from Wagner’s point of view is enforcing, or enabling that difference.

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Melania Moscoso Pérez, « The invention of disability »Alter, 16-2 | 2022, 31-42.

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Melania Moscoso Pérez, « The invention of disability »Alter [En ligne], 16-2 | 2022, mis en ligne le 29 juin 2022, consulté le 10 novembre 2024. URL : http://journals.openedition.org/alterjdr/623 ; DOI : https://doi.org/10.4000/9if5

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Melania Moscoso Pérez

Instituto de Filosofía, Consejo Superior de Investigaciones Científicas
melania.moscoso[at]cchs.csic.es

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