Les incapacités motrices lourdes engendrent des situations de handicap au cours desquelles l’autonomie du corps et du sujet sont bousculées. Les attendus et les évidences du corps valide sont suspendus. Ne pouvant plus agir directement sur elle-même ou sur son environnement, la personne en situation de handicap doit passer par l’intermédiaire d’un dispositif d’aide polymorphe constitué à la fois d’aides humaines et techniques. Au cours de chacune des interactions avec ce dispositif, les limites entre soi et l’autre, entre l’intérieur et l’extérieur, se brouillent.A partir de trois enquêtes ethnographiques réalisées auprès de personnes en situation de handicap vivant à domicile, la recherche doctorale a pour objet l’analyse de cette expérience corporelle. Dans une première partie, la thèse montre que la singularité de cette expérience repose sur le principe d’une distribution du corps, alternant entre déconstruction de soi et renégociations empiriques des frontières à partir de la définition d’une intimité. La recherche distingue ensuite trois formes possibles d’une existence au quotidien avec des incapacités motrices. Chacune d’entre elles se traduit par unedistribution singulière des frontières de l’identité / Severe motor impairments generate disability situations in which the autonomy of body and of the subject are disrupted. Expectations and taken-for-granted attitudes regarding the valid body are challenged. No longer in capacity to act directly on themselves or on their environment, persons with disabilities must interact with polymorphic help devices consisting of both human and technical aids. In these interactions, limitations between self and others or between inside and outside are blurred.Based on three ethnographic studies conducted with persons with disabilities living at home, the doctoral research aims at analyzing their specific corporal experience. The first part of the dissertation analyzes the experience of people with severe motor impairments as an experience of a distributed body, alternating between self-destruction and empirical negotiations of body frontiers with reference to intimacy. The second part distinguishes three forms of the experience of everyday life with severe motor impairments, which result in different distributions of the frontiers of self

This PhD thesis uses survey data and involves the application of latent factor structural equation methods to the study of the economics of disability and disability policy in later life, a topic which is currently very high on the policy agenda. It comprises four studies. The first chapter investigates the presence of health-related sample attrition (the drop-out of eligible sample members over time) in the English Longitudinal Study of Ageing (ELSA). The second chapter examines whether different indic ators of disability, collected in three widely-used household surveys, are consistent with a common set of findings relating to the targeting of disability benefits. In the third chapter we estimate the additional per sonal costs experienced by disabled older people to achieve the same material standard of living as similar people living without disability. Chapter 4 assesses the presence of socio-economic disparities in birth-cohort trends in later life physical and cognitive disability and in the receipt of non-means-tested cash disability benefits.

This thesis examines the impact of reforms to disability benefits enacted by the Coalition Government of 2010-2015 on disabled people living in Scotland. Situating the Coalition’s reform agenda in the context of disability policies since the late Victorian era, it is apparent that the evolution of disability policy has not been a smooth, coherent, or strategic process. Nevertheless, it is possible to identify three trends that have been apparent since 2010. The first relates to the primacy given to participation in employment as the basis for ‘active’ citizenship, underpinned by a conditional approach to the receipt of benefits. The second relates to the conception of disability as an administrative category which is inherently expansive and therefore prone to crisis. Finally, the way in which reforms have been justified with reference to concepts such as ‘independent living’ is identified as a significant divergence from previous approaches to disability policy. Based on semi-structured depth interviews with twenty-three working-age disabled people, this thesis explores the impact of the Coalition’s reform agenda on disabled people living in Scotland across three dimensions. Firstly, it examines the extent to which behavioural responses to perceived ‘welfare dependency’ are based on a restrictive conception of agency that fails to capture the many and varied ways in which those in receipt of benefits act. Secondly, it explores the reforms as characteristic of a ‘crisis’ in the disability category, and considers the impacts of attempts to contain this crisis through increased reliance on medical testing. Finally, it considers the use of policy language derived from the disabled people’s movement to ascertain whether these changes are reflective of a citizenship agenda in disability policy. Key findings include that while the Coalition’s approach emphasized participation in the labour market, and drew disabled people increasingly into conditionality, this had not resulted in a rise in labour market involvement for those in this study. Nevertheless, this study also demonstrated that disabled people can and do make a range of contributions to society whether they are in work or not. The findings presented here therefore stand in contrast to narratives that portray those in receipt of benefits as feckless and work-shy. They also serve to challenge some of the dominant assumptions about the agency of those in receipt of disability benefits, and highlight that structural barriers continue to shape individuals lives in many ways. Furthermore, this work serves to illustrate the challenges of negotiating an increasingly complex process of accessing and being assessed for disability benefits. An important insight related to the way in which tighter eligibility criteria combined with a ‘climate of fear’ brought about by media reporting of the reforms to generate a form of ‘hidden conditionality’. Participants described being under surveillance by authorities and their own communities. Dominant narratives had served to foster feelings of resentment and indeed vindictiveness against a group who were seen to be receiving favourable treatment at a time of austerity. This was reflected in an increase in incidents of hate crime and violence against disabled people. Finally, this thesis provides an evaluation of the extent to which the Coalition’s linguistic support for independent living was reflected in the lived reality of their reforms. It finds that while the Coalition explicitly drew on the language of the disabled people’s movement in the framing of policies, this discursive support had not been reflected in the experience of these policies. New approaches to the organization of social care in Scotland have also sought to advance the citizenship of disabled people living here. While the introduction of Self-directed Support (SDS) demonstrated considerable potential for a citizenship approach, the overall trend during this period was towards a reduction in the amount of choice and control disabled people were able to exercise. This work is among the first substantive pieces of research to examine the impacts of the Coalition’s reforms on disabled people living in Scotland. It contributes to knowledge in this area across four dimensions: firstly to debates around the agency and assumed agency of those in receipt of disability benefits; secondly to the understanding of disability as an administrative category, and the implications of this for policy; thirdly in connecting literatures concerning the narrative trends around reform to those concerning surveillance, vindictiveness, and resentment; and finally to the literature on ‘personalization’ in health and social care, and the emerging body of work on the impact of SDS in Scotland.

This report portrays the findings of research on the experiences of inclusion/exclusion of people with disabilities in faith communities, from a social work perspective. It was a journey undertaken with a group of people with disabilities in Pietermaritzburg, South Africa during 2009 and 2010. In narrations on the journey, participants expressed their experiences of exclusion, not being considered and their personhood not always being respected in faith communities. However, the journey also revealed suggestions of how their inclusion could be enhanced by changing practices, developing understanding of the needs of people with disabilities, and raising awareness of these. The report concludes with recommendations for ways that people with disabilities and others in faith communities can journey together in faith communities to the benefit of all. / Social Work / M.A. (Social Science)

L'objectif de cette étude ethnographique est d'analyser la subjectivation des adultes atteints d´un handicap cérébral moteur et de dépendance physique à partir des stratégies quotidiennes conduisant à l´autonomie. Les résultats montrent trois éléments liés à l´action autonomisante :(1) le processus d'infantilisation : qui fonctionne comme un « modeleur » de la subjectivité. L´autonomie sera, alors, le résultat de la dynamique entre la résistance des sujets aux effets de l'infantilisation ; (2) la dépendance physique et les soins : un élément qui pose problème au projet d'autonomie en tant que détachement de l'autre. Le soin demandé par le corps abimé met en cause l'idéal d'autonomie comme auto- suffisance, ce qui exige une analyse qui prend en compte les deux pôles de la relation (soignant-soigné) ; (3) l'action autonomisante et l´invention de soi : l'autonomie est liée à des processus subjectifs et ne peut être vue qu´à travers les mouvements quotidiens d´auto-production qui ont lieu dans les rapports à l'autre et dans le monde culturel. L'accent est mis sur les stratégies (les actions, les interactions, les réactions) qui permettent aux personnes handicapées de s'inventer de façon originale et unique. L'hypothèse centrale est que le désir, plutôt que la raison, a un rôle central dans la quête de l'autonomie. / The objective of this ethnographic study is to analyze the subjectivation process of adults with cerebral palsy and physical dependence in everyday strategies for gaining autonomy. The results show three elements in the characterization of autonomy for physically dependents individuals:(1) the process of infantilization: which acts as a molder for subjectivity. Autonomy is, thus, the result from the dynamic range between resistance and submission on the effects of infantilization;(2) physical dependence and care: this is a problem-solving element of the project of autonomy. The demanded care puts into question the ideal of autonomy as self-sufficiency and requires an analysis that takes into account the two poles of the relation (caregiver – care recipient), (3) the automizating action and the invention of the self: autonomy is related to subjectivation process and as such can only be captured by means of daily movements of self-production which takes place into intersubjectivity. The emphasis is on strategies (actions, interactions, and reactions) used by individuals with disabilities to resist to the circumscription of the self and to invent an original and unique way of life. The central hypothesis is that the desire (rather than reason) has a central role in the quest for autonomy. / Nas últimas décadas, observa-se um deslocamento dos discursos médicos em direção a uma concepção sócio-construcionista sobre as pessoas com deficiência, o que tem animado os debates a respeito da autonomia e a inserção social desse grupo. No entanto, a dualidade estabelecida por essa nova abordagem entre social- biológico não parece dar conta da complexidade que o processo de autonomia assume na vida desses sujeitos e não se sustenta sob a luz das teorias aportadas pelo pensamento pós-estruturalista. Assim, a partir da crítica ao racionalismo e ao individualismo moderno – levantada pelas reflexões feministas sobre cuidado – a contribuição da fenomenologia e das filosofias da diferença, a presente tese propõe uma análise da relação entre dependência, deficiência e autonomia de modo a considerar os elementos frequentemente descarados nos discursos militantes sobre o tema. O objetivo do trabalho consiste em analisar o processo de subjetivação de adultos com paralisia cerebral e dependência física a partir das estratégias cotidianas de conquista da autonomia. A pesquisa de campo teve duração de 14 meses, ao longo dos quais foi realizada observação participante sobre a vida cotidiana de dois indivíduos adultos com paralisia cerebral e dependência física. Entrevistas semidiretivas foram desenvolvidas com os familiares e os sujeitos com deficiência de modo a reconstituir a trajetória pessoal de cada um deles. Os resultados apontam três elementos que se articulam no fazer-autônomo dos sujeitos sob dependência física: (1) o processo de infantilização – que funciona como uma espécie de força de formatação e reificação da subjetivação desses indivíduos. A autonomia resultaria da dinâmica entre a resistência à infantilização e os efeitos desta na vida dos sujeitos com deficiência. São descritos na tese três pontos que constituem a infantilização: o argumento da vulnerabilidade como explicação para a necessidade de controle e cerceamento, a negação da sexualidade e da desejabilidade do corpo deficiente e a afirmação da razão como meio de ascensão à vida adulta; (2) dependência física e cuidado – trata-se de um elemento problematizador do projeto de autonomia como desvinculação do outro e que não pode ser descartado na compreensão deste fenômeno. O cuidado demandado pelo corpo dependente coloca em xeque o ideal de autonomia como autossuficiência presente na concepção de indivíduo moderno e exige uma análise que leve em consideração os dois polos da relação (cuidador – pessoa sob cuidado); (3) ação automizadora e invenção de si – a autonomia está intrinsecamente relacionada com os processos de subjetivação e, como tal, só pode ser percebida a partir dos movimentos cotidianos de autoprodução na relação com o outro e com o mundo. A ênfase é dada nas estratégias (ações, interações, reações) utilizadas pelos indivíduos com deficiência para resistir à circunscrição da subjetividade e para inventarem a si mesmos de modo original e singular. A hipótese central é de que o desejo (tanto quanto a razão) tem um papel determinante na busca pela autonomia. Tornar-se adulto (logo, autônomo) para as pessoas com deficiência física grave não significa necessariamente assumir a rigidez e a retidão comumente associada a essa fase da vida. Mas guiar-se pelo devir-criança e pelo prazer de experimentar a diferença a partir da multiplicidade que abriga o conceito de deficiência.

This report portrays the findings of research on the experiences of inclusion/exclusion of people with disabilities in faith communities, from a social work perspective. It was a journey undertaken with a group of people with disabilities in Pietermaritzburg, South Africa during 2009 and 2010. In narrations on the journey, participants expressed their experiences of exclusion, not being considered and their personhood not always being respected in faith communities. However, the journey also revealed suggestions of how their inclusion could be enhanced by changing practices, developing understanding of the needs of people with disabilities, and raising awareness of these. The report concludes with recommendations for ways that people with disabilities and others in faith communities can journey together in faith communities to the benefit of all. / Social Work / M.A. (Social Science)

Current studies done using a learning test for children have problems as they only make evaluations of Physically and Neurologically Impaired (PNI) children who can succeed in the test and can be considered as a PASS/FAIL test. This pilot study takes a holistic view of cognitive testing of PNI children using a user-test-device triad model and provides a framework using non-PNI children and adults as controls. Comparisons using adapted off-the-shelf novel interfaces to the computer, in particular, an Electroencephalograph (EEG) head-set, an eye-tracker and a head-tracker and a common mouse were carried out. In addition, two novel multi-modal technologies were developed based on the use of brain-waves and eye-tracking as well as head-tracking technologies to support the study. The devices were used on three tests with increasing cognitive complexity. A self-developed measure based on success streaks (consecutive outcomes) was introduced to improve evaluations of PNI children. A theoretical model regarding a fit of ability to devices was initially setup and finally modified to fit the view of the empirical model that emerged from the outcomes of the study. Results suggest that while multi-modal technologies can address weaknesses of the individual component modes, a compromise is made between the user’s ability for multi-tasking between the modes and the benefits of a multi-modal device but the sample size is very small. Results also show children failing a test with a mouse but passing it subsequently when direct communication is used suggesting that a device can affect a test for children who are of a developing age. This study provides a framework for a more meaningful conversation between educational psychologists as well as other professionals and PNI parents because it provides more discrimination of outcomes in cognitive tests for PNI children. The framework provides a vehicle that addresses scientifically the concerns of parents and schools.