“No! You can’t have it”: Problematizing choice in institutionalized adults with intellectual disabilities (original) (raw)
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Beyond custodial care: Mediating choice and participation for adults with intellectual disabilities
Journal of Occupational Science, 2017
Occupational scientists posit that choosing and participating in occupation contributes to overall health and well-being. Yet institutionalized adults with intellectual disabilities (ID), a disability community with a long history of enduring grave injustices, continue to face barriers to selfdetermined participation. This paper draws on data from an institutional ethnographic study aimed to make visible the inter-relational ways national, state, and local policies mediate the possibilities to choose and participate in occupations for adults with ID. To explore the impact of state-mandated policies, data were collected in an intermediate care facility. Participants included seven adults diagnosed with profound ID and eight staff members. Participant observation, ethnographic interviews, and organizational texts (e.g., national and state mandates, and policies and procedures) were the main sources of data. Conceptual mapping was employed as an analytic process to connect participants' narratives back to the policies that coordinated their work in the facility. Analyses revealed that the policies guiding the provision of habilitative programming created a systematic regulation of participation in occupations of residents' and staff's choosing. More specifically, analyses demonstrated how policies placed greater value on routinization and efficiency over self-determined participation. These findings highlight the lack of opportunities for residents and staff to incorporate occupations of their choosing into the fabric of daily living in an institutional setting. Additionally, they call attention to the ways institutional routinization is a perpetuation of the historical notions of what adults with ID should do.
Biograf, 2014
The text is an unpublished English translation of: Synek, M., and R. Carboch. 2014. "Profesní slepota a režimy spěchu: Podpora soběstačnosti při jídle v institucionální péči o lidi s mentálním znevýhodněním [Professional blindness and regimes of haste: Support of self-sufficiency in eating in institutional care for people with mental disability]." Biograf 60: 59 paragraphs. People living in “homes for people with health impairments” perform activities connected with the preparation, serving and eating of food at various degrees of self-sufficiency. Their autonomy in eating is influenced by their cognitive, sensory and physical abilities. But our observation of the assistance provided while eating also shows that self-sufficiency is negotiated – it is the result of an agreement between the client and the network of care, constituted not only by clients and carers, but also by technologies, rules, and the architecture of the surrounding “material” world. Self-sufficiency – in this case manifested as the ability to consume breakfast or lunch more or less independently – is not the client’s essential quality. It does not exist by itself, in a space formed solely by his or her “level of mental impairment”, but in a complex network of associations constituted by many human and non-human actors undergoing constant change. In the practice of institutional care for people with mental impairment we are frequently confronted with a situation characterized by a lack of time, individual approach, cooperation or the necessary resources indispensable for promoting self-sufficiency. We propose to describe this state of affairs – called “professional blindness” by the actors – not as an impairment of sight or judgment, but as an ordering of the network of care in which the space for promoting self-sufficiency is limited by accepted regimes of haste. The research described in the article focuses on several specific situations influenced by institutionalized regimes of haste and, together with the actors, seeks possibilities for their analysis and re-tuning.
Work, Employment and Society, 2019
This article explores how circuits of accountability impact front-line service work in an intermediate care facility for individuals with intellectual disability (ICF/IID). Institutional ethnography as a theory and methodology guided the data collection and analysis processes. Participant observation and interviews were completed, and text work was employed to make visible the ways staff enacted what they believed to be their roles and responsibilities. Results indicated the service criteria established by regulatory agencies were interpreted and executed in ways that negatively influenced staff’s moral care to residents and restricted their ability to self-govern and utilize their experiential knowledge. Additionally, the institution’s circuits of accountability reflected ideals of front-line work that were inconsistent with staff’s perception of their responsibilities. These findings have implications for management and implementation of direct care in ICFs/IID and underscore the ...
(Un)making of infelicitous objects: Enacting “mental impairment” in institutional dining
4S/EAAST2020 conference, 2020
In my presentation, I would like to reflect on some of the findings of a research and social innovation project whose aim was to improve serving of food in the residential institutions for people with the diagnosis of "mental impairment". These so-called "homes for people with health impairments", much like Erving Goffman's infamous asylums (1968), house big number of people and through the highly-orchestrated social care practices provide for much of their basic needs. As the observation which I am going to present to you today pertain mainly to the question of how to deal with bad situation-and perhaps also how to find something good in them-it is important to say right at the start that our project was from its very beginning based on a shared critical stance, namely, that food, as it is cooked and served in such "homes", is not good for the boarders, even though it is prepared and offered while paying special attention to their needs. At least some of the main actors-that is some of the regional government's representatives, some of the managers of the residential institutions, and most importantly, some of the people cooking and serving meals-agreed that the food they make and distribute is in fact impaired, in the sense that it doesn't nourish-nutritionally and socially-its consumers. After introducing the field of the inquiry, I will present three different routes that elaboration of this initial critical stance can take in research and in practice, together with some of the effects that taking these routes had, or could have had, on the serving of meals at the "homes" and on the closely related subjects. I will suggest that being true to the empirical data is only one-if crucial-aspect of this problem and that being good might be equally important. Of course, such presentation is based on an idea that experiences from the field might by re-told in various ways, each having different narrative, results and impact. As Dona Haraway famously put it: "It matters what matters we use to think other matters with; it matters what stories we tell to tell other stories with" (Haraway 2016, 12). Thus, when presenting the different approaches taken to describe repertoires of meal provision in residential institutions, I will argue for a privileged position of one of these approaches, without trying to suggest that it is the only one possible. To get a glimpse of the kind of practices we tried to explore and influence through our research and social innovation project, consider the following observation from the Home Z, one of residential institutions for "persons with health impairments": The lobster salad (made of celery) is served as a "meal of choice". This is no doubt one of those new meals-a part of Mediterranean week?-that the head of meal services is so proud of. It soon becomes evident that the meal doesn't work as it's supposed to. Clients who have ordered the meal do not know what to do with it. [...] The problem is that the care workers on duty did not cut the long white baguette into pieces and the unknown object looks strange and
Autonomy on the horizon: comparing institutional approaches to disability and elder care
Theory and Society, 2021
This article asks how people come to interpret themselves and others as autonomous given their multiple dependencies. We draw on a cross-case comparison of ethnographic studies with two populations for whom autonomy is both central and problematic: elderly patients in post-acute care, and young adults with disabilities in an independent living program. Analyzing the institutional efforts to make their clients "as independent as possible," we find that staff members at each organization formulate autonomy as a temporal project through an ongoing calibration of open futures, ideal pasts, and situational competence. Constantly adjusting and fine-tuning where in time autonomy "really" is, workers arrange present dependence so that the contours of the future remain open for their clients. In other words, they make use of temporal markers to produce recognizable autonomous subjects whose dependencies are momentary. Theorizing this temporal project enables us to see more clearly how all of us engage in the constant business of "doing" autonomy, and to better understand the role of institutions in producing autonomous selves.
The overall aim of this dissertation was to determine how the daily operations and institutional structures of an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) coordinate what residents and staff do. The specific aims were to (1) identify and describe the daily operations and institutional practices of the facility; (2) identify and describe the activities of the residents and staff; and (3) identify and describe how the opportunities for residents to choose and participate in meaningful activities were affected by institutional operations and culture. Institutional ethnography was applied as a social theory and methodology. Data were collected over 14 weeks with seven residents with profound ID and eight staff members. Data collection methods included participant observation, ethnographic interviewing, and text work. Conceptual mapping and narrative analysis were employed as iterative and reflexive processes to systematically extract narrative ...
Impaired Food: Routine, Materiality and Ontology in Social Care Practice
Ph.D. Thesis, Masaryk University, Brno, 2019
In the Czech Republic, thousands of men and women identified as mentally impaired live in large residential institutions, many of them housing more than a hundred inhabitants. As part of the highly- institutionalized care routines followed by the staff of such “homes for people with health impairments”, they are served meals supposedly enhancing self-sufficiency and dignity and tailored to their “special needs”. However, despite the focus on individualisation and autonomy, the inhabitants of the asylums often get food that they cannot eat, or that they are forced to eat even if it does not suit them. The essays collected in this dissertation reflect upon six years of experience with a social invention project aimed at analysing and changing this situation. Through this reflection, the essays aim to enhance our understanding of the making of sociomaterially heterogeneous ‘objects’ – such as impaired food or mental impairment – in highly routinized everyday practices. Inspired by material semiotics, actor-network theory and disability studies, they investigate how different versions of mental impairment are enacted in repertoires of dining and how their encounters in the field of this activity disable/unable the various actors of residential care. Their main focus is on institutionalized care routines and their patterns, sociomateriality, force and durability, together with possibilities for formulating alternatives. Given the complex research environment riddled with numerous controversies regarding practices, ontologies and values, a praxiographic ethnography became the main research tool. Joint observations, interviews and discussions with communication partners were designed to comply with the key methodological rule of diplomatic ethnography: to “speak well to someone about something that really matters to that person”. This methodological dictum of Bruno Latour has been tested in a setting where some of the key actors not only meet considerable difficulties in voicing their matters of concern but are also disqualified as reliable witnesses by a strongly naturalised association with mental impairment. Staying true to the chosen approach meant paying heightened attention to the practical and embodied aspects of experience and sometimes also abandoning diplomatic negotiations for diplomatic arguing. It has been found that when the obduracy of the ordering arrangements is taken into account and values are honoured, the diplomatic argument might become a productive analytical tool. When discussing and doing “things that really matter”, the researchers and the communication partners discovered that among the many problems that are continually being addressed in residential institutions, a prominent role is played by “enhancing clients’ self-sufficiency when eating” and “professional blindness”, a characteristic of some of the staff members that allegedly hinders desirable interventions into the existing care routines. In our joint probing and intervening into “limited self- sufficiency” and “professional blindness”, neither of these qualities was found to be essential to the clients or the staff members. They appeared as heterogeneous quasi-objects/subjects, existing in a complex network of associations constituted by many human and non-human actors undergoing constant change. It has been found that “professional blindness” is not an impairment of sight or judgment, but an ordering of the network of care in which the space for promoting self-sufficiency is limited by existing regimes of haste, strongly influenced by the organizing object of mental impairment. In line with this insight, the main body of the research explores enactment of mental impairment in repertoires of dining, using diffraction of Annemarie Mol’s, Jeannette Pols’ and Ingunn Moser’s classical praxiographic studies as a means of analysis. In Hospital Z described in Mol’s book The Body Multiple, doctors, patients and various technical devices enact atherosclerosis, a disease to be cured. As almost everybody agrees that atherosclerosis is a useful object – in the sense that it enables treatment – its enactment could be described as the coordination and distribution of various versions of activities/objects. The object thus enacted is more than one and less than many. At Home Z in the Czech Republic, care workers, clients and various technologies and technical devices enact mental impairment, a disorder to be managed. The various different incarnations of the object in question – mental impairment enacted as a medical condition, as an object of care, as an opportunity for inclusion, as wickedness of the man-child, or as an object of critical attitude – are not made anew with the help of inscription devices, but are reiterated through many repertoires of care, including meal provision. Agreement on what mental impairment means is rare, and the utility of some of its versions is contested. Mental impairment is less than one and more than many, as none of its versions acquires coherence of a useful whole, and every practice of constructing it further multiplies incompatibilities. In addition to activities of coordination and distribution, which hold atherosclerosis together in Hospital Z, the infelicitous object of mental impairment is saved through thinking/acting from where one is (not), an activity which simultaneously relates to and denies multiplicity, often with disastrous effects on the intimately related subjects. But food, thanks to its fluid materiality, can become a space for enacting other ‘objects’ besides mental impairment. In efforts to change impaired meals into more a pleasurable experience, the home-like meal is supposed to infuse the residential institutions with home-like qualities. Staff members serving meals in “households”, organisational units built to provide domesticity, consider privacy and autonomy important characteristics of a home-like meal and strive to provide meals of the same qualities to the diners. At the same time, they consider this task impossible given the current orderings of the network of care. This discrepancy between the assessment of the current state of affairs and the desired ends in view is displaced by labelling the diners mentally impaired, in this specific case incapable of understanding and thus of enjoying the home-like meal. The text ends by retelling the story of one of the few former “home” residents. By leaving the institution but staying well-attached, he has enacted another version of home beyond the institutionalised discourses of communality and privacy, one conceptualized here as an intimate sphere. When evaluating the potential of different versions of home-like meal for driving reform, the conclusion is made that effective reform must be defined pragmatically, as one that cannot be pacified by the strategy of labelling. Like the repertoires of dining which it seeks to describe, this dissertation enacts mental impairment in a number of different and partially disparate ways. A methodological problem of re-telling accounts that nobody takes seriously, a rationale and an obstacle to heterogeneous socio-material practice of enhancing self-sufficiency, an unhappy object multiple held together by practices of adiaphora and by ghosts of the past, or a labelling strategy creating a semblance of home where there is none – all this is mental impairment as enacted by the individual chapters in this collection. If there is one single moral within this diversity, it is this: Mental impairment could be otherwise. Like many other biological entities aka scientific facts, it is not destiny. And the main objective of this collection is to open a path to this otherwise by deconstructing, as John Law puts it, the “commitment to visible singularity” that “not only hides the practice that enacts it, but also conceals the possibility that different constellations of practice and their hinterlands might make it possible to enact realities in different ways”.