Towards an Ethics of the Communication Relationship with People with Angelman Syndrome
As part of anthropological research within several medico-social establishments, the ecosystem of the communication relationship with people with Angelman syndrome (SA) was analyzed, a genetic particularity generating in particular a delay in physical and mental development, as well as a profound impairment of the faculty of oral language. Through a corpus of twenty-six semi-structured interviews carried out in eight French medico-social establishments, as well as four days of participant observation and starting from the point of view of daily support professionals, we were able to analyze from an anthropological point of view, the challenges of the interaction linked to communication. In this context, the use of enhanced alternative communication (AAC) tools is an integral part of co-learning between professional and user. “Alternative” communication sets up alternative means when natural communication is not sufficiently developed to be operational. Besides this substitutive aspect, “enhanced” communication supports or augments oral language when it is insufficient to establish a communicative relationship (Élisabeth Cataix-Nègre, « Polyhandicap, communication et aides à la communication. Communiquer autrement », 2017). For example, sign language, facial expressions and/or body position are part of AAC as well as pictograms (images, drawings or photos expressing words or ideas). This respective development is part of a diachrony and is based on mutual understanding, itself linked to the initiatives of professionals who must grasp the specificities of their experience with each SA. Support cannot be provided without pooling the knowledge and experience of professionals, taking into account the subjective dimension of their relations with a person with SA. More specifically, these relationships are established in the long term and they must be personalized, repeated and ritualized according to the fluctuations of the patient’s resources. Thanks to their appropriate use, AAC tools facilitate mutual understanding taking into account the singularities of each and the relational and environmental context of individuals within the framework of an individualized project. Analyzed from an anthropological point of view, the use of AAC covers not only specific techniques to be applied but also an intersubjective situation which leads to a better understanding of the representations of professionals with regard to this handicap, the processes of observation, interpretation, and adaptation to the other. These different levels of analysis allow, ultimately, the highlighting of an ethical posture at the center of the care of these users. In doing so, we will question the role of communication with a person with SA: is it intended to better “decode” their needs or does it ultimately correspond to the search for mutual understanding which, however imperfect it may be, requires respect for the integrity of another? This leads more broadly to rethinking the notion of autonomy, the main objective of the support and development of AAC, through the prism of pleasure and well-being, and no longer, exclusively, from the angle of the basic needs of people with SA.