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How are norms challenged by disabilities?

Emmanuelle Fillion et Delphine Moreau
p. 9-11
Cet article est une traduction de :
Les normes interrogées par le handicap [fr]

Texte intégral

  • 1 See the original call for papers and the composition of the organising committee on the conference (...)
  • 2 Canguilhem invited us not only to identify this double meaning of the norm, as an average and as an (...)
  • 3 Campbell Fiona Kumari. 2001. Inciting legal fictions: “Disability’s” date with ontology and the abl (...)

1The 9th Alter Conference organised by the EHESP School of Public Health (Rennes, France) and Alter Society, on April 8 and 9, 2021, was devoted to questioning the construct of the concept of normality.1 More specifically, we wanted to challenge the common view which, rather covertly structures our societies, according to which being “valid” is the norm, in two often compounded ways, of being the most widespread and the most desirable situation.2 This view is expounded in the notion of “ableism” which Fiona Campbell defined in 2001 as a “network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species typical and therefore essential and fully human. Disability then is cast as a diminished state of being human. Disability is then presented as an altered form of humanity.3 Present-day use of the notion expand to the construction of psychological and cognitive norms, and more generally to the production of health norms in general, any deviation from which is understood as a deficiency, and the concern of a minority. This critical perspective makes it possible to highlight the way in which our societies are structured and organised with reference to this figure of the valid individual, in their architectures, their organisations, their forms of communication, etc. Like other biases – such as ethnocentrism – validism operates in a systemic and often unthought way. Although the understanding of validism defines the field of disability studies it remains focused on certain areas and currents of the field of disability studies, which this colloquium sought to broaden. To what extent is the concept of validism is relevant for understanding and questioning the construct of normality at work in our societies and in our research?

2If the dissemination of the concept of “inclusive society,” announced as the new collective normative framework, seems to signal a radical turning point, what is the situation in practice? Are we really done with the tendentially negative, defective, and even tragic representations of disability, or with the exceptional representations that tend to essentialise the difference between disabled and able-bodied people? It has been pointed out how much the “heroic” figures of disability, which have become omnipresent in the public space, for example during the Paralympic Games, tend to prolong (and invert) this approach of disability as a deviation from the norm.4 To what extent does research on disability lead us to renew a distinction between disabled and non-disabled people or to question it? The question of the norm thus irrigates a whole series of questions: how are the people concerned designated in our research (users, social actors, informants, respondents, people with disabilities, disability situation, vulnerable people, etc.), with what implications? Does the open perspective allow us to articulate dependence and autonomy differently? How does it force us to rethink the definition(s) of the disabled person? In particular, what is the contribution of the concept of validism – and how does it relate to – other existing conceptualisations of disability as well as other ways of describing and problematizing how disability is perceived in our societies: discrimination vs equality, segregation vs inclusion, oppression vs emancipation or capacitation? Since the end of the 1990s, this concept has been gaining ground among activists groups as well as in the scientific sphere: initially in Anglo-Saxon countries, and unevenly in other geographical or linguistic areas.

3Adopting a wide lens, we wanted to discuss the different conceptual and methodological tools that have been used to analyse the construct of normality by questioning their contributions and their limits. We also questioned the way in which the analysis of disability can combine with, and be compared to, other conditions of minorisation and domination: How to proceed this comparison and this generalisation, without ignoring the specificity of the experiences of persons with disabilities? How to account for the singularity of disability, while taking into account the multiplicity of the axes of domination and the effects of cumulative or intersectional discriminations? The articles in the present issue show only a part of the wealth and diversity of the contributions at the Alter conference.

4Anne Revillard’s article explores the circulation and exchanges between gender and disability studies. The author shows how the questioning of norms, initiated by gender studies, has been continued and enriched by disability studies. In particular, the former has made possible the uncovering of neglected areas, such as the categorisation of populations as binary, or the hierarchy of norms, and the situated nature of these norms, as opposed to a supposed universality and/or neutrality. The author nevertheless invites us to discuss the hypothesis of an intrinsically oppressive dimension of the process of categorizing people, as categorizing also allows access to rights and can support a strategy aiming at equality.

5Melania Moscoso suggests to rethink the notion of disability from the perspective of Roy Wagner’s concept of invention and Canguilhem’s notion of vital normativity, to overcome a constructivist approach of the social model of disability, without returning to an essentialising version of the medical model. It is a question of considering the multiple normativities at work in nature through the constant production of anomalies, i.e. variations, and their constant relationship of invention and adaptation in their interaction with the environment. To extend further this way of thinking, it is a question of paying attention to this normativity specific to each person, and in particular to the conditions necessary for people with disabilities to create new norms while adapting to their environment. This would allow to take into account their personal experiences, beyond standardised responses or normalising aims.

6Adrien Primerano reflects back on the emergence and the expansion of the concepts of “capacitism” and “validism” in the francophone space. The article introduces some clarification around definitions of syntagms used in connection with the questioning of norms and the denunciation of a world centred around “validism.” The article clarifies differences in use of these syntagms within the realm of activism and the realm of scholars: what commonalities and what tensions exist between those two approaches? The article suggests that further research is needed to challenge concepts established within the realm of activism.

7In a context marked by the COVID pandemic, which did put both systems of care and of social solidarity to the test and did affect mostly vulnerable people (in terms of mortality and morbidity, but also in terms of limitations of freedoms), Juliette Hontebeyrie explores in her article how the health standards enacted in France during the Spring 2020 lockdown were implemented in ESATs (french establishments and services of assistance through work). Her article highlights differentiated treatments across the ESATs. The author shows that a wide diversity of approaches in the assessment and hierarchy of standards is linked to different conceptions of disability held by professionals as well as to the skills’ recognition they grant to their workers.

8Finally, Elena Nosenko-Stein’s article analyses autobiographical writings of people with disabilities in the Russian context to explore their experience with grappling with highly prevalent historical and cultural deprecatory representations of disability. This research shows that defective representations of disability, combining pity and rejection, produce self-stigmatising effects, despite sometimes relatively successful trajectories of integration. The author highlights the coping strategies and subjective perspectives developed by the people with disabilities she met with, which are often neglected and misrepresented by the stereotypes in use.

9The conference thus raised the question of the conceptual tools in circulation to think the norm between the realm of activists and scholars. Disability studies have demonstrated the strength of a line of thought that is both academic and activist. Nevertheless, important questions remain to be discussed, notably on the rise of concepts – such as inclusion or autonomy – whose public success can sometimes have as counterparts a lack of scientific clarity, or even of political ambiguity.

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1 See the original call for papers and the composition of the organising committee on the conference website:

2 Canguilhem invited us not only to identify this double meaning of the norm, as an average and as an ideal, but to question the reasons for this recurrent confusion. Canguilhem Georges. 1978. Le normal et le pathologique. In Écrits sur la Médecine: 155-70. Paris: Le Seuil.

3 Campbell Fiona Kumari. 2001. Inciting legal fictions: “Disability’s” date with ontology and the ableist body of the law. Griffith Law Review, 10(1): 42-62.

4 Rojas Elisa. 2009. Libres et égaux, sur le papier. In Charles Gardou (ed.). Le handicap par ceux qui le vivent: 67-83. Toulouse: Érès (Reliance).

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Emmanuelle Fillion et Delphine Moreau, « How are norms challenged by disabilities? »Alter, 16-2 | 2022, 9-11.

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Emmanuelle Fillion et Delphine Moreau, « How are norms challenged by disabilities? »Alter [En ligne], 16-2 | 2022, mis en ligne le 29 juin 2022, consulté le 09 décembre 2023. URL :

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Emmanuelle Fillion

Université de Rennes, EHESP, CNRS, ARENES - UMR 6051

Delphine Moreau

Université de Rennes, EHESP, CNRS, ARENES - UMR 6051

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Le texte seul est utilisable sous licence CC BY-NC-ND 4.0. Les autres éléments (illustrations, fichiers annexes importés) sont « Tous droits réservés », sauf mention contraire.

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