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Concluding Remarks / Point de vue conclusif

The Institution and de-institutionalization

Institution et désinstitutionnalisation
Henri-Jacques Stiker
p. 115-124

Résumés

La désinstitutionalisation est devenue un thème central dans le domaine du handicap pour permettre aux personnes concernées un vie autonome et indépendante. La signification de la désinstitutionalisation ne peut être intelligible que si on analyse son terme opposé à savoir l’institution. Qu’est-ce qu’une institution par-delà la diversité de ses formes et de ses interprétations? Elle pose trois grands problèmes: l’institution est-elle réductrice des individus? Les individus s’y soumettent-ils complètement? Qu’est-ce qui peut la réguler? Considérer à cette hauteur toute institution apparaît comme ambivalente, répressive mais pleine de ressources, consentie par ses usagers qui peuvent néanmoins la contester, reposant sur une fonction mais aussi un imaginaire. Cette analyse amène à concevoir la désinstitutionalisation comme une dynamique constante au sein même de l’institution, qui ne peut jamais se réduire à la notion d’établissement. Institution, dont ne peut se passer la société et qui assure les supports nécessaires pour réaliser cette autonomie et cette indépendance. Il s’agit d’un double processus. Cet environnement institutionnel fait partie des facteurs environnementaux qui déterminent la condition handicapée. Et toute institution est elle-même intégrée à un environnement institutionnel plus large. Il n’y a pas de fonctionnement en dehors d’un environnement institutionnel. Le problème est dès lors de s’assurer que cet environnement œuvre en faveur de la liberté des individus

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1. Introductory remarks: What are we talking about?

1I am using the two terms that I shall consider, namely, the institution and de-institutionalization, in the singular because, first and foremost, I am not talking about the brick-and-mortar structures and very diverse forms of institutions. My aim is to shed light from above on de-institutionalization – a subject about which so much has been written and triggered so many discussions and arguments in the field of disabilities and, more generally, in the medical and medico-social sectors. This is especially necessary since most arguments calling for de-institutionalization do not offer sufficient clues when it comes to defining what they are opposing and mostly reduce the terms under consideration to a single form of institution and de-institutionalization. Yet an empirical assessment of the issue would point to the plural: the 14th of July in France, the presidency of the Republic, Sanofi, the Garges-lès-Gonesse sport club and the French association of paralytics “Association des Paralysés de France” are all institutions. What do these legally recognised entities have in common? It looks more like a pot-luck supper to which each one contributes willy-nilly. The variety of what we call an institution, and rightly so, manifests by this very fact the variety of its interpretations:

The variety of the usages of the term “institution” is the first clue to the fact that we are dealing with a notion whose analytical treatment cannot be taken for granted: the whole constitutional system of a country (Denis Richer); any legitimate social group (Mary Douglas); beliefs and patterns of behaviour inspired by the community (Durkheim); rules of the game for the players, who consist of organizations and households (Douglas North); collective action for the purpose of controlling individual action (John Commons); regularity of behaviour recognised by all the members of a society and stabilised by either individual interest or an external authority (Andrew Schotter); a symbolic, socially approved network combining a functional component and an imaginary component (Cornelius Castoriadis); codification of strategies of evolutionary balance; etc. (Bessy & Favereau, 2003: 119)

2In the “etc.” that ends this quote we can find many more authors. Sociology, in the wake of Pierre Bourdieu, insisted on the idea of separation (of sexes, of genders, of populations, of ages, even of nations) and, consequently, on the creation of categories that would be considered more or less essential:

Instituting means consecrating, that is, approving of and sanctifying a state of affairs, an established order, just as a constitution does in the legal and political sense of the term […] The act of institution is an act of social magic that can create difference ex nihilo or else (as is more often the case) by exploiting as it were pre-existing differences, like the biological differences between the sexes or, as in the case of the institution of the heir on the basis of primogeniture, the difference in age. (Bourdieu, 1982: 58)

3As a result, “It is through the effect of statutory assignment (noblesse oblige) that the ritual of institution produces its most ‘real’ effects: the person instituted feels obliged to comply with his definition, with the status of his function” (ibid.: 121). Bourdieu’s analysis was not without significance in disabled people’ rejection of so many institutions as well as in the de-institutionalization movement.

4Let us add, moreover, the way Michel Foucault shined a light on the disciplinary nature, and thus also on the controlling role (the notorious panoptic), of major institutions, such as psychiatric hospitals and prisons, as a whole. According to Foucault, society has focused on discipline from A to Z for at least the past two centuries. Its institutions merely reflect this primordial feature of the society that has arisen out of the modern era.

  • 1 These questions are posed in the article “Institution” in Dictionnaire des Notions, Encyclopaedia U (...)

5Having mentioned the myriad of approaches to the institution and institutionalization, I shall now take up the matter through three major questions that are put to any institution, regardless of the theoretical stance that is taken: the question for the institution is to know if it is essentially repressive. The question for the people within the institution is to know how much leeway they are given. Finally, can and must regulations, and more generally the law, regulate institutions?1 These questions will be tackled from the standpoints of the relations between the institution and the individual (Part 2), submitting to institutional rules (Part 3), and, finally, the role of the law in institutions (Part 4). Some limits to my comments need to be mentioned. I do not claim to develop a sociology of institutions, as for example Romuald Bodin does (2018) which would seek to associate types of disability with the major social institutions. Nor do I intend to analyse the concept of disability, which I have done in previous work. My intention here is simply to situate what we call de-institutionalization.

2. Institution and individual

6We have just seen how Bourdieu approaches the matter of the nature of the institution through the notion of assignment. However this is not always the case, even though its constraining nature is often underlined. Are institutions always there to limit individuals’ freedom of movement? Institutional changes occur frequently and the very de-institutionalization movement shows clearly that institutions do not shackle individuals’ freedom of action completely. De-institutionalization in the area of disabilities emphasised the coerciveness of the institutions that segregate people, a phenomenon that fosters domination. It targeted the establishments, which were often locked behind walls with imposed regulations and organizational structures. People in these institutions had no choice when it came to their lifestyle, habitat, partners, ability to travel or move about, and so on. This restrictive definition of the institution is indeed what we find in official texts, such as is the case in the writings of the European Coalition for Community Living, which was founded in 2005 and is part of a European network run by people with disabilities called the European Network on Independent Living.

  • 2 Comité Français des personnes Handicapées pour les questions Européennes –CFHE (2008: 29). It goes (...)

Any place where individuals who are commonly labelled as having disabilities live apart or are indeed segregated and/or are even forced to live together is an institution. The institution is also defined as a place where people have no or are not allowed to exercise control over their own lives and day-to-day decisions. An institution is far from being defined solely by its size.2

7This definition concerns only the physical dimension of the institution, that is, it assimilates it with the notion of an establishment. The litany of definitions with which I began this article clearly shows how unfounded taking one for the other is. Bastille Day and sport clubs are institutions, not establishments. This restrictive view has impoverished the discussion of de-institutionalization in the area of disabilities. As we shall see, it is something completely different.

8Even if we accepted this idea of equating the institution with the establishment, approaching establishments solely in terms of their repressive potential would not suffice. Indeed, whilst individuals can upset institutions, institutions also provide them with resources. We could speak at length about the cases of educating children who would never have been given schooling in the segregative world that long prevailed. To cite just one famous historical case: If Louis Braille had remained in his saddler father’s workshop and never entered the Institution for Blind Youth in Paris, he could not have become the inventor that he did. We could also take the opposite tack by citing a recent example, that of Alexandre Jollien, who might never have become the philosopher that we know if he had remained in the centre where he was relegated to rolling cigars. However, we must not be too quick, either, to forget that his taste for intellectual pursuits was born in the library of the institution’s old chaplain.

9The two cases that I have just mentioned show that an institution can also allow its subjects to engage freely in various practices without its being accused of being shams or instruments of arbitrariness. Institutions are not societal emanations purely contingent on the here and now, even though many of them are born and die. They give structure to living together and are thus simultaneously shackles and resources.

10Of course in the area of disabilities and in the medico-social sector more generally, constraint often prevailed. However, if we want to catch a glimpse of de-institutionalization in the service of the individual’s autonomy and freedom, we must not overlook everything that we can use in the institutional framework’s existing resources.

11I remember one example that illustrates both repression and the use of resources. This was the creation of the association “Vivre Debout” by a group of young muscular dystrophy patients in the 1970s. These young people were institutionalized in an establishment set up by a religious hospital order, l’œuvre de Saint Jean de Dieu. Their desire to live autonomously led them to take a series of initiatives (trips, think tanks, planning groups, projects, support for people on the outside) until the day in 1976 when, back from a trip to Canada, they wanted to leave the institution. The director of the establishment then took a series of measures to thwart this emancipation: letters to their parents threatening the end of social security payments, making the buildings off limits to a researcher who was favourable to the young people, retortion against a staff member, and so on. The young people ended up leaving the establishment and creating Vivre Debout (Galli & Ravaud, 2000). This is not the only example that comes to mind, but, along with others, it illustrates the twofold nature that an institution may have: repressive, of course, but also offering resources that enables one to escape from possible totalitarianism. These young muscular dystrophy patients freed themselves first by using what the institution provided. As individuals they were in thrall, but only to a certain point.

12My example of Vivre Debout reminds us that we cannot escape forms of institution and institutionalization: once you leave an establishment and live what is known as an ordinary live, whatever form the latter takes, you do not live like Robinson Crusoe on an island. You inevitably have to become part of or create institutions! As we shall see, this obvious remark orients the meaning that must be given to de-institutionalization.

3. Submitting to institutional rules

13The problem here concerns the people in institutions. It is overwhelmingly a fact that individuals submit to orders, sometimes going as far as to accept the intolerable. When the national anthem rings out, everyone present at that moment stands, the military salutes and children are made to keep quiet. The order to adopt a certain attitude before the nation’s flag when the Marseillaise resounds seems to be taken for granted, for we have internalized this symbol and the respect that is due. However, there have been numerous cases in which not submitting to this obligation has been seen precisely to be contesting the government in place, for example during athletic events. Internalization and support, however strong they may be, sometimes have limits. Yet we must always remember what Étienne de la Boétie called “voluntary servitude.” His Discourse on Voluntary Servitude, published in 1574, is an indictment of absolutism and consists in showing that servitude is not imposed by force but is voluntary: No power, not even and especially that imposed by force, can last and dominate without the active or resigned collaboration of a large fraction of the members of society. This thesis has been borne out in the case of certain educational or social institutions, and not just those of the state. Moreover, Erving Goffman’s analysis of total institutions (Goffman, 1961) can be tied in with this 16th century thesis.

14So, whilst individuals sometimes rebel or contest things, the question remains as to why people obey institutional rules. Transforming or abolishing institutions or de-institutionalizing in one way or another is not enough. The persons themselves must also be stakeholders in such actions. How far can the internalization of obligation go?

15Is it the fear of moral sanctions that maintains such submission? Yet the absence of sanctions does not prevent the actors submitting to prescribed behaviours and, to take the very opposite case, strong sanctions do not prevent deviant practices. The women’s uprising in Iran in autumn 2022 is proof of that. Is obedience or disobedience then explained by the advantages or disadvantages that one procures from an institution? Do individuals calculate the cost/benefit ratio each time? That would assume particularly rational individuals, which is seldom the case. Finally, one might think that submission results from the weight of routines, deeply rooted habits and thus unconscious attitudes. To my mind, in line with the arguments of Boétie or Goffman, it is due more to social pressure, pressure that can take the form of fear of standing out, of being conspicuous, the force of the people known today as “influencers,” fear of gossip, etc. Several factors may play a role at the same time and reinforce the subjects’ acceptance of what is imposed on them: fear of punishment, self-interest, routines and social pressure can combine.

16Be that as it may, de-institutionalization could not ignore the fact that the support of the individuals concerned or their families and the social environment is required. Yet such support is not a given. To get it, training and working on convictions are required. However, must de-institutionalization be seen as radical detachment from all adherence to an institution? A minimum distance between the people concerned and the demands of the institution – a distance that may increase over time or with circumstances – may suffice.

4. The role of the law in institutions

17Society may include informal groups or groups that do not ask for legal recognition. The overwhelming majority of associations in the field of disabilities, and even more so institutions founded by the state, are recognised by the law. With the right to exist, the legal universe comprises obligations but also freedoms, which are often incarnated in house rules and various other manifestations. Should the law be the first and only regulator of institutions? Clinging to this legal pedestal is a double-edged sword for the users of these institutions. It easily becomes a legal straight-jacket when the authority in question refuses to add a measure of flexibility. However, institutions usually originate out of circumstances and contingent historical needs. To avoid abuses of power or the weakness of the users’ freedoms, relying on the law (the constitution of a body, circulars, house rules, etc.) can then play a regulatory role. However, that is still a double-edged sword. We have seen that in the briefly-evoked creation of the association Vivre Debout.

18If we start from the assertion that institutions are not endowed with a sort of timelessness, permanence or universality, analysing their operation and development comes under the social sciences as much as it comes under the legal field. Whether it is sociology, history, psychology or any other branch of the humanities, the social sciences all include a critical standpoint, for they look for what is behind the story. De-institutionalization can rely on the various studies that multiply the approaches to institutions and institutionalization. The relationship between law and the social sciences ties in with the distinction that Cornelius Castoriadis explained at length between the functions of institutions and what he called their “imaginary component.” Stressing only the functions (education, vocational training, protection, etc.) that justify the multiplicity of institutions in the area of disabilities boils down to reducing the meaning of and grounds for the institution; the functionalist perspective would reduce society to being no more than its institutions. “Alienation appears first of all as the alienation of a society to its institutions, as the autonomization of institutions in relation to society” (Castoriadis, 1987: 115). When society or any group within society creates something (an establishment, foundation, association, etc.) thanks to established norms, it does so to meet a need, but these creations are not perfectly understandable only from this need. “What will provide the starting point for our investigation is the manner of being in which the situation is given to us – namely, the symbolic” (ibid.: 117). I would be straying from my remit to explain everything that Castoriadis includes in his understanding of “the symbolic”: it includes the effects provoked by an institution, the language that is used and the rituals that are established. More precisely, the symbolic contains the imaginary, which is that ability to

(s)ee in a thing what it is not, to see it other than it is. However, to the extent that the imaginary ultimately stems from the originary faculty of positing or presenting oneself with things and relations that do not exist, in the form of representation (things and relations that are not or have never been given in perception), we shall speak of a final or radical imaginary as the common root of the actual imaginary and of the symbolic. This is, finally, the elementary and irreducible capacity of evoking images. (Ibid.: 127)

19To understand the pertinence of Castoriadis’s remarks to our question, let us simply say that institutions will, for example, claim that they are the only valid institutions, cannot deviate from their founders’ wishes, comprise a sort of historical transcendence and so on. By playing on a function (recognised by law) and the imaginary (often unsaid and unconscious), institutions guarantee their permanence and necessity.

20Separating function from this imaginary, in the manner of Castoriadis, is an important facet of de-institutionalization. It is deconstruction done so as not to let institutions adopt images of themselves, whether such images are fantasised, unfounded or illegitimate. This also amounts to analysing, beyond the bounds of established law, all the sociological, anthropological and historical contingencies upon which institutions depend.

21The work of de-institutionalizing concerns, as we have seen, the complex whole that is an institution: from the way it considers individuals to the way individuals submit or do not submit to it, with the role of the legal framework up to the connected symbolic in between. Reducing the institution to the notion of an establishment means missing an appropriate analysis. De-institutionalization is broad and much farther reaching than the elimination of institutions.

22The authors whom I mentioned earlier on, Loïc Andrien and Coralie Sarrazin, make use of another distinction, but one that intersects with the distinctions that I’ve just made between law and social sciences and between function and the imaginary. They differentiate the instituting from the instituted. “The instituting is innovation, refusal of the universal; the instituted is the norm, the search for the universal” (Andrien & Sarrazin, 2022: 65-6). And so, “De-institutionalization could thus be perceived as a movement going from the instituted to the instituting, from the established, accepted norm to a social innovation that might contradict this norm” (ibid.: 66). Like me, the authors go on to underline the interweaving of institutionalization and its unravelling, if you will allow me this metaphor, to knit it anew. One cannot be conceived of or done without the other.

5. Concluding remarks: What then is de-institutionalization?

  • 3 In a score of pages the authors analyse the question in terms of the relationship between instituti (...)

23The individual cannot be forced, either from outside by the institutional framework or from within through her/his own internalizations. Analysis of institutions shows that they tend precisely to lock up individuals and to use self-justification and their imaginary spills well beyond their recognised functions. De-institutionalization thus starts logically inside institutions, for it must combat what institutions tend to prioritize and consider absolute. One must not say that you need only destroy them and then emerge from them, since you cannot escape from institutions. It is possible to escape from the special form of institutions that is the establishment, as a place and regulations. If we want to avoid choosing between Scylla and Charybdis, a de-institutionalization process is needed, one that works on all institutions, both those that are created as alternatives to contested forms as those that are already there. De-institutionalization is a dynamic, a process that must be at work as soon as there is an institution. Since institutions also have resources and the individuals within their bounds are able to distance themselves from and contest them, de-institutionalization can rely on these riches and forces. We can thus see clearly, from all angles, that institutionalizing and de-institutionalizing are two sides of any institution that wishes to be alive (Andrien & Sarrazin, 2022).3 Unless one is a radical anarchist or believes people to be rootless individuals who are not part of the social fabric, I do not see how absolute de-institutionalization can be proclaimed. This view does not exclude the occasional need to destroy certain institutions, but that is not the de-institutionalization process; it steps in as such only occasionally. If we agree to look far beyond disabilities, one of the reasons for our highly individualistic, fragmented society at the mercy of certain groups that feel that they have a license to destroy is precisely the weakness, even the absence, of strong democratic institutions. When there are no longer any intermediate bodies, e.g., unions, associations, non-governmental associations, etc., we can end up with either the law of a single person/entity or a world in which, to borrow Hegel’s expression, all cows are black. The “instituted” must not only be strong but also driven by the entire grassroots population (Mongin, 2023). All in all, we need to distinguish between the instituted (which relates to the existence of the social and the political level), the institution (which concerns the concrete shape taken by the instituted) and institutionalisation (which is the processes by which the institutions are set up). Does de-institutionalization concern all three? It clearly appears now that it is not the case. Eventually, de-institutionalization only addresses a certain type of institutions and institution-making.

24This perspective has the advantage of envisioning various manners of de-institutionalization, in both time and space, for circumstances and environments are diverse and changing. For instance, you can keep the walls but enable the people whom they shelter to be completely autonomous. Here I am thinking of people with multiple disabilities, and I know of “establishments” that manage to achieve just such a goal. People will tell me that ideally such inmates should live outside these establishments, with all the necessary assistance provided by the community. However, we must make no mistake: even thought this might be the desired and actual policy, the assistance provided is also institutional and can include the failings of the contested institutions. The service institution also needs to be de-institutionalized.

  • 4 Robert Castel conducted countless analyses of the society of individuals, often subject to “disaffi (...)
  • 5 I must underline the fact that the concept of “instituted” must be well specified. When Loic Andrie (...)

25The choice of living independently, with a lifestyle like that of any citizen (dwelling, transport, leisure activities, etc.) cannot but be encouraged, if it is the person’s own wish. But we cannot overlook the fact that to achieve this independence as fully as possible, support is needed (Castel, 2009: 443-4),4 and this support will always be instituted.5 Clearly, alongside institutions that support people, there are prison institutions that crush individuals. This is where we need to make the link between institution and environment as, with disability studies and the “social model” of disability, the environment has become one of the factors in disability. An institution is obviously an environment, itself embedded in more global environments. Since we cannot escape our environment, no more than institutional forms, the question is whether or not these environments work in favour of people, their autonomy and their freedom. Eventually, the bottom line comes to defining the purpose of de-institutionalization.

26Indeed, de-institutionalization is not an end in itself. It serves the most complete fulfilment of the people concerned, and persons with disabilities in this case. This fulfilment must include all the requests of such people and which I shall not develop again, that is, lifestyle choices, meaning the dwelling, companionship, autonomous decision making, everything that is put under the (hard to translate in French) word “impairment,” freedom of access to all common goods and services, etc.

27Just as putting a disabled child in a classroom is not sufficient to consider that the child’s inclusion has been achieved and will be salutary only if the child benefits from appropriate social organization around such schooling, closing down facilities is not sufficient to consider that de-institutionalization has been achieved. The issue is to insert a de-institutionalisation process everywhere. I could wrap up quite easily with the following passage from the above-mentioned authors:

If the main stake is to recognise people with disabilities to be subjects with rights in search of a self-determined life, then our responsibility is to question the processes whereby we produce disabilities. De-institutionaliszation must kick in at that point. It is the driving force of organizational changes and must enable us to challenge all the norms that we have internalized. (Andrien & Sarrazin, 2022: 72)

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Bibliographie

Andrien Loïc & Coralie Sarrazin. 2022. Handicap, pour une révolution participative. La nécessaire transformation du secteur médico-social. Toulouse: Erès.

Bessy Christian & Olivier Favereau. 2003. Institutions et économie des conventions. Cahiers d’économie politique, 44(1): 119-64.

Bodin Romuald. 2018. L’Institution du handicap. Esquisse pour une théorie sociologique du handicap. Paris: La Dispute.

Bourdieu Pierre. 1981. Rites of institution (adapted English translation of Ce que parler veut dire) translated by Gino Raymond & Matthew Adamson. In John B. Thompson (ed.). Language and symbolic power: 117-26. Cambridge: Polity Press.

Bourdieu Pierre. 1982. Ce que parler veut dire. Paris: Fayard.

Castel Robert. 2009. La Montée des incertitudes. Paris: Éditions du Seuil.

Castoriadis Cornelius. 1987. the imaginary institution of society (English translation of L’Institution imaginaire de la société. 1975. Paris: Éditions du Seuil), translated by Kathleen Blamey. Cambridge: Polity Press.

Comité Français des personnes handicapées pour les questions européennes — CFHE (2008). Institutions, désinstitutionalisation.

Dictionnaire des notions. 2005. Encyclopaedia Universalis.

Dictionnaire historique de la langue française. 1995. Le Robert.

Galli Christine & Jean-François Ravaud. 2000. L’association Vivre Debout: une histoire d’autogestion. In Catherine Barral, Florence Paterson, Henri-Jacques Stiker & Michel Chauvière (eds). L’Institution du handicap, le rôle des associations: 325-35. Rennes: Presses universitaires de Rennes.

Goffman Erving, 1961. Asylums: Essay on the social situation of mental patients. New York: Doubleday.

Mongin Olivier. 2023. Démocraties d’en haut, démocraties d’en bas. Paris: Éditions du Seuil.

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Notes

1 These questions are posed in the article “Institution” in Dictionnaire des Notions, Encyclopaedia Universalis (2005: 612ff.).

2 Comité Français des personnes Handicapées pour les questions Européennes –CFHE (2008: 29). It goes without saying that by no means does this quote reflect the position held by the French Committee of Disabled Persons regarding European Issues (CFHE) with regard to the subject at hand.

3 In a score of pages the authors analyse the question in terms of the relationship between institutionalization and de-institutionalization based on what social scientists in the various branches of the humanities mean by “institution.”

4 Robert Castel conducted countless analyses of the society of individuals, often subject to “disaffiliation” or exclusion “by default,” that our society produces. He consequently stressed the need for various types of support. He wrote, for example, that there were no individuals without support, for being only an individual was a terrible experience. Consequently, to be an individual in a positive manner, he explained, one had to be affiliated or re-affiliated, meaning that the individual had to be able to rely on points of support, to lean on something to ensure her/his independence.

5 I must underline the fact that the concept of “instituted” must be well specified. When Loic Andrien and Coralie Sarrazin pit “instituted” against “instituting,” they want to distinguish the static from the dynamic nature of institutions. The creative process (instituting) can represent de-institutionalization. What I draw attention to is that one cannot eliminate the “instituted,” regardless of the dynamics of the innovation and alternatives, for we are social beings. The disabled persons’ movements that advocate de-institutionalizing the disabled are not unaware of that in practice, for they cannot do without various types of support, just like everyone else, for that matter.

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Henri-Jacques Stiker, « The Institution and de-institutionalization »Alter, 18/2 | 2024, 115-124.

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Henri-Jacques Stiker, « The Institution and de-institutionalization »Alter [En ligne], 18/2 | 2024, mis en ligne le 10 juin 2024, consulté le 22 juin 2024. URL : http://journals.openedition.org/alterjdr/3874

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Henri-Jacques Stiker

Laboratoire ICT-Les Europes dans le monde (Identities, Cultures, Territories Laboratory - Research Unit 337) Université Paris Cité
stiker.jacques[at]orange.fr

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