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

Pessoas com tetraplegia possuem controle sobre poucas partes do corpo, por isso têm grande dificuldade de interação com o mundo ao seu redor. Interfaces humano-computador que utilizam a capacidade de controle muscular remanescente podem promover um acréscimo importante na autonomia do usuário com tetraplegia. Uma nova forma de interação com o computador é proposta: controle de um dispositivo de entrada por meio do lábio inferior. A ideia não foi partir da tecnologia e agregar recursos, mas sim, partir da pessoa e entender suas necessidades e potencialidades para pesquisar, propor, desenvolver e avaliar alternativas tecnológicas. Com o intuito de investigar se o lábio inferior seria capaz de controlar uma interface de maneira eficiente e precisa, foram desenvolvidos protótipos de um dispositivo de entrada vestível que pudesse ser acionado pelo lábio. Considerando o estado da arte, foi avaliada a capacidade do lábio inferior controlar esta interface proposta como um mouse de computador. Também foi realizada a comparação do controle pelo lábio inferior e pelo polegar utilizando o mesmo dispositivo sob as mesmas condições. O objetivo foi estabelecer referências sobre a capacidade do lábio inferior de controlar uma interface. Foram realizados e analisados os resultados de testes com sujeitos de pesquisa, mensurando e comprovando a capacidade tanto do lábio inferior, como parte do corpo capaz de controlar um dispositivo de entrada, quanto do próprio dispositivo. / People with tetraplegia control few body parts; therefore, they have great difficulty to interact with the environment. Human-computer interfaces that explore the residual muscular control capacity can provide the user with tetraplegia with an important autonomy increase. I propose a new form of interaction, a input device controlled by the lower lip. The idea was not starting from the technology and aggregate resources, but starting from the user needs to research, to propose, to develop and to evaluate technological alternatives. In order to investigate the lower lip ability to efficiently and precisely control an input device, prototypes of a wearable device were developed. I presented an evaluation of the lower lip potential to control a pointing input device, according to the state of the art. The lower lip throughput was compared with the thumb throughput using the same input device under the same conditions. The objective was to establish the baseline for future researches about the lower lip capacity to operate a computer pointing device. The results proved and measured the capacity of the interface as well as the lower lip as a body part able to control a input device.

Pessoas com tetraplegia possuem controle sobre poucas partes do corpo, por isso têm grande dificuldade de interação com o mundo ao seu redor. Interfaces humano-computador que utilizam a capacidade de controle muscular remanescente podem promover um acréscimo importante na autonomia do usuário com tetraplegia. Uma nova forma de interação com o computador é proposta: controle de um dispositivo de entrada por meio do lábio inferior. A ideia não foi partir da tecnologia e agregar recursos, mas sim, partir da pessoa e entender suas necessidades e potencialidades para pesquisar, propor, desenvolver e avaliar alternativas tecnológicas. Com o intuito de investigar se o lábio inferior seria capaz de controlar uma interface de maneira eficiente e precisa, foram desenvolvidos protótipos de um dispositivo de entrada vestível que pudesse ser acionado pelo lábio. Considerando o estado da arte, foi avaliada a capacidade do lábio inferior controlar esta interface proposta como um mouse de computador. Também foi realizada a comparação do controle pelo lábio inferior e pelo polegar utilizando o mesmo dispositivo sob as mesmas condições. O objetivo foi estabelecer referências sobre a capacidade do lábio inferior de controlar uma interface. Foram realizados e analisados os resultados de testes com sujeitos de pesquisa, mensurando e comprovando a capacidade tanto do lábio inferior, como parte do corpo capaz de controlar um dispositivo de entrada, quanto do próprio dispositivo. / People with tetraplegia control few body parts; therefore, they have great difficulty to interact with the environment. Human-computer interfaces that explore the residual muscular control capacity can provide the user with tetraplegia with an important autonomy increase. I propose a new form of interaction, a input device controlled by the lower lip. The idea was not starting from the technology and aggregate resources, but starting from the user needs to research, to propose, to develop and to evaluate technological alternatives. In order to investigate the lower lip ability to efficiently and precisely control an input device, prototypes of a wearable device were developed. I presented an evaluation of the lower lip potential to control a pointing input device, according to the state of the art. The lower lip throughput was compared with the thumb throughput using the same input device under the same conditions. The objective was to establish the baseline for future researches about the lower lip capacity to operate a computer pointing device. The results proved and measured the capacity of the interface as well as the lower lip as a body part able to control a input device.

Many individuals with severe motor impairments are cognitively capable, but because of their physical impairments, unable to express their intention through conventional means of communication. Access technologies are devices that attempt to translate the intention of these individuals into functional activity by harnessing their residual physical or physiological abilities. The primary objective of this thesis was to design and develop a novel non-invasive and non-contact access technology based on infrared thermal imaging. This access technology translates the local temperature change associated with voluntary mouth opening to activation of a binary switch such as a mouse click or key press. To this end, an algorithm based on motion and temperature analyses, and morphological and anthropometric filters was designed to detect mouth opening activity in thermal video in real-time. The secondary objective of this thesis was to introduce a mutual information measure for objective assessment of binary switch users’ performance. A model was suggested, in which combination of cognitive and physical abilities of the human user of a binary access switch constitute a communication channel. The proposed mutual information measure estimates the rate of information transmission in the ‘human communication channel’ during stimulus response tasks. Using this measure, in a study with ten able-bodied participants, the infrared thermal switch was validated against a conventional chin switch. Impairments in body functions and structures that may contraindicate the use of the infrared thermal switch were explored in a study with seven clients, with severe disabilities. Potential hard and soft technological solutions to mitigate the effect of these impairments on infrared thermal switch use were recommended. Finally the infrared thermal switch was tailored to meet the needs of a young man with severe spastic quadriplegic cerebral palsy, who had no other means of physical access.

Many individuals with severe motor impairments are cognitively capable, but because of their physical impairments, unable to express their intention through conventional means of communication. Access technologies are devices that attempt to translate the intention of these individuals into functional activity by harnessing their residual physical or physiological abilities. The primary objective of this thesis was to design and develop a novel non-invasive and non-contact access technology based on infrared thermal imaging. This access technology translates the local temperature change associated with voluntary mouth opening to activation of a binary switch such as a mouse click or key press. To this end, an algorithm based on motion and temperature analyses, and morphological and anthropometric filters was designed to detect mouth opening activity in thermal video in real-time. The secondary objective of this thesis was to introduce a mutual information measure for objective assessment of binary switch users’ performance. A model was suggested, in which combination of cognitive and physical abilities of the human user of a binary access switch constitute a communication channel. The proposed mutual information measure estimates the rate of information transmission in the ‘human communication channel’ during stimulus response tasks. Using this measure, in a study with ten able-bodied participants, the infrared thermal switch was validated against a conventional chin switch. Impairments in body functions and structures that may contraindicate the use of the infrared thermal switch were explored in a study with seven clients, with severe disabilities. Potential hard and soft technological solutions to mitigate the effect of these impairments on infrared thermal switch use were recommended. Finally the infrared thermal switch was tailored to meet the needs of a young man with severe spastic quadriplegic cerebral palsy, who had no other means of physical access.