The real explanation for the apparent need for institutions is not because some people are ‘too disabled’ to live in the celebrate varying and unique abilities (ENIL, 2014)

1. Introduction

1The research (which will be presented in section 3.) deals with the independent living of people with intellectual impairment. More specifically, about ten years later the United Nations Convention on the Rights of Persons with Disabilities (CRPD) it was asked what Italy was doing to let people with intellectual impairment live independently.

2Disability Studies (Finkelstein, 1980; Hunt, 1966; Oliver, 1990; 1996; Barton & Oliver, 1997; Barnes, Oliver & Barton, 2002; Medeghini & al., 2013; Medeghini, 2015; Goodley & al., 2018; Bocci, 2015; 2019) and Institutional Analysis (Lapassade, 1972; Lapassade, 2009; Guattari, 1974; Hess, 2008; Curcio, Prette & Valentino 2012; Gueli, 2018) represent the theoretical framework from which – and by means of which – we have set up our reflection and the consequent research. For instance, according to the perspective of Disability Studies people with impairment will be termed as experts because they – and not people working with them1 – daily experience disability in an ableist world (Barnes, 2003; Gardou, 2006).

3The underlying hypothesis of this paper is that in order to foster the construction of independent living for adults with intellectual impairment, it may be useful to grasp the complexity of the network of roles of the social actors involved. Through analysing the processes by which actors attribute meanings to events, roles, and devices that are brought into play in the construction of independent living for people with intellectual impairment, it is possible to intervene in contexts, making them inclusive. Such an analysis is made possible by the Institutional Analysis (which will be discussed in the following section).

4As far as the Disability Studies perspective is concerned, it allows us to problematise – thanks to the criticism of the current vision of inclusion emerging from national and international legislation – how inclusive processes are implemented in the various social contexts: school, university, services, the world of work, independent living. It is precisely with reference to this last aspect, which is also transversal to all the others (the construction of a full and independent living begins at school, goes through the possibility of educating oneself at the highest level and being able to have a full and recognised working life), that it emerges how even today the most vulnerable people (disabled people but not only, obviously) are subjected to assimilation and normalisation practices rather than being truly accompanied in a self-determined emancipatory process.

5Schools, universities, services, and the world of work operate on the basis of specific devices –think, for instance, the specialised support teacher, the university tutor of the specific service for disabled people, the disability manager (Bocci, Guerini & Travaglini, 2020; Guerini & al., 2021), etc. – which are indicated by the regulations but without which the system remains blocked. In fact, if one or more of these specific devices is missing (think, for example, of the absence in Italian schools of the specialised support teacher), the social participation of the person to whom the device has been assigned is affected (in the sense that it does not take place). Consequently, the person remains in that condition of liminality so well described by Robert Murphy (1987). In our case (and paraphrasing Murphy’s words) pupils with impairment are somewhere between being neither fully pupils of the common teacher who is at school nor fully disabled because the school cannot entrust them to the support teacher (who is momently not at school). Thus, they do not access to social participation. It is no coincidence that, after the social conquests in Italy that took place over a crucial decade, from the late 1960s to the 1970s, in which so-called de-institutionalisation took place (think the closure of special schools and asylums), fifty years later there is a need to begin a new phase that we could define as new-de-institutionalisation (Bocci & Guerini, 2017).

6This new institution-building thrust (Canevaro, 1999), must undoubtedly have at its core the realisation that nothing can be done without the active participation of the people involved in the emancipatory process – according to the classic slogan Nothing about us, without us (Charlton, 1998) – but also a renewed awareness that the current paradigm of inclusion must also be challenged. This, as it has emerged, is all too similar to integration, whereby the system reacts to the presence of differences with mechanisms of reasonable accommodation, of compensation, but without ever really questioning them. Therefore, we are still anchored to an ableist social, economic, political and cultural model, which exalts the productivity of individuals – their performance, supporting the idea that it is necessary to be normally healthy in order to participate in the productive life of the country. As a result, those who deviate from this normotypical view are not identified as social subjectivities and are consequently considered not to need (not to say not to deserve) to have their full and independent life recognised.

7Thus, talking about independent living, intentionally focusing on intellectual impairment – which is only perceived as the weakest position in the hierarchy of the ableist conceptualisation – becomes a way to focus on (and expose) the ambiguities and distortions of our social system, which, although it claims to be inclusive in its declarations of principle, is still not inclusive in reality as it remains discriminatory, exclusionary, unequal and unfair.

8For these reasons, we have conducted a multiple case study which will be presented in the section named “Investigating the independent living of people with intellectual impairment: the research”. Before proceeding to his description, though, in the following section our attention will be focused on the Institutional Analysis which – as stated above – together with the Disability Studies constitutes the theoretical framework of our research.

2. Institutional Analysis and Dialectics

9Similar to Disability Studies, Institutional Analysis offers a theoretical gaze that we believe is useful in guiding research related to the independent living of adults with intellectual impairment, exploring practices and enabling social transformations. Moreover, in both approaches the researcher pays attention to analysing the processes activated during the investigation. One of the key elements of Institutional Analysis is defining the level of transversality of groups in institutions. Transversality refers to how the individual can connect to external realities (Guattari, 1974). If a group within an institution can express its needs and is recognised in its existence, the level of transversality will be considered high. Conversely, a group that cannot express its needs and therefore is not recognised in its existence, will have low transversality. For instance, in our study, if the ability to connect researchers with experts is filtered through the chiefs of residential facilities, the individual’s level of transversality turns out to be limited. In fact, no actor in an institution belongs to only one group. We also understand the concept of transversality as the set of belongings that people have within themselves. Each belonging makes it possible to connect with other actors, individuals (as in the case of the researcher) but also to other institutions and other organizations.

10Institutional Analysis and socio-analysis, which is one of the forms through which social groups can be analysed, assume that groups “must make a determined effort to establish a careful and permanent look at the powerful implications of their existence. And that, among these, special attention should be brought to the internal discriminations arising from power relations that, consciously or unconsciously, run through the life of groups, inflicting small and great violence on its members” (Curcio, Prette & Valentino, 2012, p. 10, our translation). The group, even when it does not arise from voluntary aggregation but as a work team (e.g., the group of insiders who coordinate the activities of adults with impairment) always provides a space for the freedom of each subject, who also becomes responsible for the possibility of building processes of change (Gueli & Bocci, 2021). Therefore, analysing institutions means investigating devices such as that of authorisation, which, as we shall see, constitutes a very interesting juncture with respect to possible declinations in terms of defining the spaces of independence, or rather, of granting independence.
In fact, different actors come into play in the dynamics of the authorisation request. The chiefs of the residential structures do not give keys because they feel the weight of their responsibility but, at the same time, the lack of access to keys denies the development of an adult identity and thus of one’s own independence.

11In the perspective of institutional analysis, the institution always arises from an instituting social process as the outcome of a collective imaginary that produces it and a narrative that sustains it (Castoriadis, 1975). In this sense, a dialectic is produced between what is fixed and crystallised (instituted) and the force (instituting) that opposes, resists, struggles for change of the instituted within the institution. Instituted is “the force of inertia of an institution that seeks to preserve the situation as it is” (Hess & Weigand, 2008, p. 77, our translation) such as the norms and conventions that define the rights of people with impairment. The impetus that can undermine what is established has been instead defined as instituting (Castoriadis, 1975). An instituting force can also be exerted by a few individuals (even those with little influence in the formal organization of an institution) who recognize that some implicit or explicit rules do not fit the needs of the group. For example, an educator might recognise an emerging need for sociability among the people living in an apartment and propose, for example, new opportunities to meet with the residents of another facility, not usually provided for in the official activity plan. The informal practice might be so appreciated over time that, from an occasional moment born of an instituting pressure, it might become part of the established activities and thus become instituted.

12Consequently, we define institutions as not only the physical spaces but also the processes of a language production that refers to a medical order of discourse (Bocci & Gueli, 2019).

13For Foucault (1979), the analysis of language makes it possible to unveil the power that an institution – that is evaluated to be of a higher order than others (e.g., the medical one) – can exert over another, which is considered to be of a lower order (e.g., one of a pedagogical or social kind). Thus, language, as well as the codes and norms expressed by an institution, when brought to light and discussed, also allow the implicit imaginings of intervention strategies to be revealed. This leads actors and the institutional system to either cooperate or react.

14Thus, exploration of terms such as “independence”, “inclusion”, “privacy” acquires value in the analysis of the voices of insiders, experts and their families from a perspective that gathers the sense of the institution through its various constituent groups.

15A key element is also the identification of some specific devices (Hess & Weigand, 2008; Gueli, 2018) and the investigation of their functioning. In fact, the analysis of the devices makes it possible to understand the emancipatory and self-determination processes of the subjects within the institutions responsible for the construction of independent living. It is exactly into the theoretical framework outlined so far that the research described below fits in.

3. Investigating the independent living of people with intellectual impairment: the research

16According to ENIL (2014) “independent living means all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community” (p. 5). As a consequence of this, living independently is not a synonym of self-sufficiency also because “nobody is self-sufficient – we all need and use support of some sort in our lives” (ENIL, 2014, p. 5). For instance, people usually ask for help from relatives and friends when they must make a decision, when they become parents for the first time, when they lost the job, etc. And so, why are people with impairment (particularly in case of an intellectual one) requested to be self-sufficient if they desire to live independently from their families? We think that the reason for this is the ableist conceptualisation that dominates the current society, (Bellacicco & al., 2022) as we previously mentioned.

17Article 19 of the Convention on the Rights of Persons with Disabilities states the right of living independently and being included in the community. More specifically, the first point of the article claims that “persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” (UN, 2006).

18This entitlement constituted the basis for conducting research on the independent living of people with intellectual impairment. The reason why we focused our attention on intellectual rather than physical or sensorial impairment relates to the fact that persons with such an impairment are usually seen as eternal children (Canevaro, 2006; Gardou, 2006; Cottini, 2011; Mura, 2013; Giaconi, 2015; Caldin & Friso, 2016; Giaconi, Del Bianco & Cardarelli, 2022). Consequently, if people with sensorial or physical impairment turn to domotics to live independently, an independent living for persons with intellectual impairment is not even imagined (Guerini, 2018b). This right – as already affirmed is set out in the 2006 UN Convention, though.

19In light of the fact that Italy is internationally recognised as a pioneer of inclusion (having opted to close special schools as early as 1977 and asylums a year later), the first aspect we examined when we decided to explore the independent living of people with intellectual impairment was understanding what Italy was doing to make it possible (as mentioned in the Introduction).

20Hence, in years 2015-2018 through a multiple case study we have investigated if and how Italian, German and Swiss residential facilities for people with intellectual impairment were changing their practices. Two reasons motivate our choice to analyse the Italian, Swiss and German institutions and not those of other European countries. The first reason relates to the time gap in which integrative practices and the phenomenon of de-institutionalisation developed in the three countries.

21In fact, in Italy these phenomena, developed as mentioned above in the Seventies already (Ianes & al., 2020), but Germany and Switzerland only decided to close special schools in recent years (Melzer, 2019). The second one concerns the year in which Italy, Switzerland and Germany have ratified the UN Convention which was 2009 for Italy and Germany, but only five years later (2014) for Switzerland. Therefore, our interest was understanding what Italy, Germany and Switzerland were doing to begin inclusive processes by which the community could better welcome people with intellectual impairment.

22The research had four objectives. 1° Reporting the Italian, German and Swiss situation concerning on residential facilities for people with intellectual impairment. 2° was to find good practices for an inclusive facilities model. 3° objective – strictly linked to the second one, was to start an exchange of good practices between the three countries involved in the study. 4° was relating to understand if it was possible to develop inclusive apartments (that is apartments where people with and without impairment live together in Germany) in Italy too.

23The study was conducted adopting a convergent parallel design mixed method (Creswell & Plano Clark, 2011). An observation sheet, logbooks, semi-structured interviews, focus groups and two ad hoc constructed Questionnaires (ABD2 and QueSA3) represent the research tools.

24The elements examined through the observation sheet (Fig. 1) have been the following: the number of inhabitants in the different residential facilities involved in the study, the activities they did during the day, the person in charge for the payment for the monthly facility’s cost, for the weekly shopping and for other home activities, the respect of the residents’ privacy.

Fig. 1 : Observation sheet used for residential facilities

25In logbooks, we have constantly noted the practices observed in the different residential structures (i.e.: the discursive rhetoric used, the possible possession of home keys by the inhabitants, etc.).

26Semi-structured interviews and focus groups were administered to experts4 and privileged witnesses (that is people who usually are in touch with persons with intellectual impairment because of work or family reasons). Interviews dealt with the following topics: probable job done by inhabitants, their previous life experiences, their future projects of life, their school experience, love life, their likely desire to live elsewhere or with other people (i.e.: friends or their own partner), years of living in the residential structure. With relatives and the team of the different residential facilities we have also discussed school and social inclusion.

27Concerning the Questionnaires, they were only used in Italy and were administered to university students (QueSA) and experts (ABD) in order to understand if and how it was possible to have inclusive apartments in our country (fourth objective of the research).

28Thirty residential facilities and 232 persons in Italy, Switzerland and Germany were involved in the research. More precisely, 9 group homes from Rome, 2 foyers from Locarno, 13 semi-supported group living homes from Rome, Udine, Bologna and Padua, 2 independent life schools from Locarno and Zurich and 4 inclusive apartments from Dresden, Tubingen and Munich participated in the study. Concerning the sample, it was made up of 92 experts, 64 privileged witnesses (that is 5 scholars, 9 relatives and 50 insiders5) and 76 university students.

29Our research hypothesis was that we would find high levels of dependency culture in Italian practices both in the language used by the social workers and in the practices implemented in the residential facilities we observed.

30Thanks to a fruitful dialogue between the perspectives of Disability Studies and Institutional Analysis (Bocci & Gueli, 2019), we understand disability as a social construction (Waldschmidt, 2018). Therefore, representations of disability, disabling processes and the role played by institutions are structural and relational spaces that generate complex dynamics between people when they embody and exercise different social roles. In the case study we conducted, we wanted to investigate such dynamics as well as the discursive rhetoric and the practices usually played by the team of the residential facilities.

31During the analysis, the 30 residential facilities have been divided into 4 cases. Residential facilities of case I were 2 foyers, 8 group homes and 1 semi-supported group living home. Among case II there were 2 independent life schools, 1 inclusive apartment and 11 semi-supported group living homes. One group home and 3 inclusive apartments constituted the residential facilities of case III. Finally, one semi-supported group living home was in case IV (Tab. 1).

32Concerning the Questionnaire administered to experts, 76 of 92 decided to participate. They were mostly women (W: 41, M: 35) aged 40 (medium age: 39,66, SD: 11,05). Regarding the item related to the possibility of living with university students, only 23 of 76 declare they would engage in this experience; most of them (48 of 76) would prefer, instead, to live with their friends6.

33From the analysis of the observation sheet, most of residential facilities involved in the research have a woman as chief and in most of the Italian ones, experts do not have their own privacy.

34More specifically, the analysis of the logbooks shows that some of the Italian group homes deny privacy also in the daily practices. For instance, in a residential facility an educator was observed shaving an expert in front of the others during the filling of the survey and in another group home an educator was changing the pyjama shirt of an expert without closing his bedroom door. Moreover, in most of the Italian group homes, experts do not have home keys.

35From data analysis, a double result has broken out. On one hand the attention of the discursive rhetoric used in the residential facilities involved in the study, on the other hand the aim at changing some practices.

36Concerning the discursive rhetoric used in the residential facilities, it has emerged from our research that in the Italian residential facilities “guys” is the most used word (even if the person is not young anymore) and educators usually address inhabitants informally even if they are more aged than themselves. Moreover, in the residential facilities of case I terms like “handicapped” and “down”, are employed and usually a distinction between us (the “normal”) and them (the “disabled”) is made. Conversely, educators of German inclusive apartments address older experts more formally.

37Relating to the practices’ change, from our study three different results have emerged. Firstly, the intention to adopt the ABD Questionnaire as tool for the implementation of language of some young adults with intellectual impairment who attend one of the associations involved in the study. More specifically, the chief of one semi-supported group living home has observed some linguistic issue experienced by the experts during the filling of the survey and thus decided to ask us for using the ABD to let them exercise with words they did not yet understand. Secondly, an Italian semi-supported group living home has asked us to be put in touch with some Swiss and German residential facilities involved in the research. Finally, a German student (who lived with people with impairment) has asked us to be put in contact with the Swiss independent life school which participated in the study.

38Results suggest the presence of a medical and childish language (in Italy in particular, we have already mentioned the use of words like “handicapped” and “down” we have observed), the absence in the Italian group homes of a sort of support to becoming adult (in most cases we have noted an absence of a life project for people who lived inside) and a sort of endless mothering (Guerini, 2020) in the three countries involved in the study (as stated before, most of the residential facilities are managed by women).

39Moreover, in Italy people with intellectual impairment are used to living with other people with intellectual impairment and have trouble thinking about other kind of home solutions as for instance living together with students. In particular, some of them reported to be afraid or shamed about it, because they are not studying and do not know the university world. Lastly, a better social inclusion in Switzerland and in Germany emerges from the case-study we conducted7. Just to make an example, both in Germany and in Switzerland people with impairment have more possibility than in Italy to work (and get money for the job they do). On the contrary, in Italy, people with intellectual impairment usually do not work and at most attend a sheltered workshop where for instance, they make some artefacts with ceramics but are not paid for what they do.

4. Conclusion

40In this paper, we wanted to explore the institutional dialectics in the emancipatory processes related to people with intellectual impairment. Concerning the case-study we conducted, the fact the first contact with the residential structures always happened with their chiefs has constituted a research limit which unfolds in two ways. The first one was a neglect by chiefs to take part in the study, the second way related to the possibility to conduct the research with their contribution without administering the ABD Questionnaire or taping the interviews. Moreover, if the chiefs of the different residential structures agreed with the participation in the study they also guaranteed experts’ consent without asking them for it before.

41The analysis has shown the existence of a core group of practitioners who, in the name of their role have in fact assumed the role of “filter” between researchers and people with impairment. In our practice, highlighting this condition of objectification means activating an instituting practice that can restore the multiplicity of belongings and return the “object” group to being a “subject group” (Curcio, Prette, Valentino 2012, p. 41, our translation).

42From our research three principal aspects broke out which all have to do more with the choices and strength of institutions and less with institutionalising by residents. The first one is a very clear dialectics of the institution between instituted and institutionalising. Let us try to explain in what sense we can grasp the instituted-institutionalising dialectics within the research. If, as we have seen, we can consider the existence of an institutional narrative that tells the institution of residences for adults with impairment as innovative spaces open to inclusion and excellence, however, the analysis of the subjects’ practices and reflections brings out a different truth. The approach of institutional analysis considers the attribution of meanings made by subjects as central to the process of empowerment. When it comes, as we have seen, to fostering the possibility of taking the floor or authorising communication, a tendency has emerged to replace the space of the other, through attitudes of censorship or substitution, exercised by the insiders who should have left wider margins for experimentation with their independence. The return of the taking of the floor by the adult subjects through the search for a direct and unmediated relationship defined, during the research, the analysis of the gap between the situation as it was defined in the research field, the desired one and the one that gradually manifested itself. The explication of this contradiction allows a curvature in the direction of greater awareness of the institutional actors involved.

43From the research we have conducted, many forms of resistance (or “exercise of power” using the word of Institutional Analysis) by some chiefs of residential structures, by some relatives and/or by society in general that seems to be still not ready to really become inclusive emerge. The focus of the exercise of power can be observed through the analysis of an element that is only seemingly marginal but assumes great centrality because it summarizes the imaginaries that support the establishment of residences for people with intellectual impairment. An emblematic example is the moment of key management, a crucial element of the management of independence (Guerini, 2018a). In Italy, compared to Germany and to Switzerland, not all residents have the keys. The interviews revealed the meaning attributed by the insiders to the cession of independence, revealing the existence of a thought subtly widespread among many of them. In fact, many chiefs of the Italian group home seem unable to conceive the possibility of letting experts go out of the structure alone or together with other inhabitant but without the educator, fearing that this could dissolve the meaning of their role (that is, they seem to ask themselves what are they doing there if people with intellectual impairment can do daily activities without their support). What emerges is the complexity of a framework that is not only medical caregiving but incorporates the limits of an experience beyond the concept of “authorisation”. The non-granting of keys defines not only the role of “patient with disabilities” but also that of “caregiver/custodian” of an imaginary that is based on a principle of infantilising, reiterated also using a vocabulary that reduces the possibilities of independence construction and suffers from a vacuum in the exploration of imaginaries. The answer to a possible question, “What are we doing here?” could initiate a future path of internal analysis (Lapassade, 2009) in which the analysis of each person’s implication, taking into account one’s role within the institutions one inhabits, would assume centrality. These kinds of questions allow for the investigation of personal and group resistances and could activate new collective explorations and new questions in the direction of increasing levels of awareness. In connection with these needs and for these reasons, we as scholars and researchers will continue to inhabit the aforementioned dialectics within study and research.