Pluies_2017_Children’s silent voices in the medical space.pdf

Children’s silent voices in the medical space: medical and political meanings of their voices Conference 2017 American Anthropological Association — November 29 - December 3, Washington, D.C., USA Panel title Re-examining Medical Narratives: The Uses, Limits, and Politics of “Storytelling” Organizers: Theresa MacPhail (Stevens Institute of Technology) Shana Harris (University of Central Florida) Communication Introduction So, between 2013 and 2015, I conducted my doctoral research in an outpatient psychiatric hospital for children, in Morocco. In my dissertation, I am interested in the everyday illness experience of children, their parents and siblings and some of the links with the socialization process within different spaces. I did ethnography at a hospital and at patients’ homes for about 1 year. Problem Two assumptions perhaps explain the craze for narrative within the fields of medicine and medical anthropology: Firstly, by paying attention to the patient narratives, medical anthropologists and health professionals envisage shedding light on the patient’s own experience. Narratives give deeper insight about the everyday experience of illness. In medical anthropology, narratives have been associated with the struggle for patients’ voices to be acknowledged. In the medical field, narratives have, in recent decades, been seen as an opportunity to enhance the quality of care. Secondly, the assumption is made that the patient’s narrative contributes to the processing of personhood. By telling someone about his experience, the patient, presumably makes sense of who he or she is. By ordering with words the events he experienced, the patient gains coherence for his life as if he were the author and the actor of his patient’s role as well as author of the choices he is expected to make in terms of health. Conducting research with children with psychological or psychiatric difficulties has brought me in the presence of children for whom speech and ordering skills are not givens. Because of current medical nosography, speech impairment and communication troubles are some of the most common issues encountered in medical settings. Although I initially wished to include within my study children who were able to verbalize their experience, to comment upon their emotions and daily activities, I quickly realized that grasping communication via verbalization only was too narrow. Questions In a broader sense, narrative has an important role that transcends verbal production. Re-examining narratives acknowledges the collective dimension of speaking as well as the value of attention even to someone who cannot speak for themself. For gaining time I will not fully detail my methods, but feel free to ask later if needed. One point has to be underlined, since it has undoubtedly shaped my research object and my perspective: when I started my fieldwork in 2013, I did not speak any word of Arabic. The first two months spent at the hospital conducting observations by default led me to heighten my attention on body movements, expressions and interactions. Case study and discussion Consider three scenes where the same boy, I call him Zyad, is talking and interacting. Zyad is a seven-year old boy. He was being treated at the hospital for behavior and language troubles, both coinciding with intellectual impairment. He also experienced problems with concentration. He can speak and go to school. The first scene takes place during an encounter at Zyad home. I am giving to the father, the mother and the child consent forms written in French and in Arabic. They all have to sign them. The father and Zyad are having a conversation while completing the forms: Father: Zyad, come here to sign the document Zyad: Let them (consent form written in French) here so I can see them Father: You don’t even know how to read Arabic and you want to read this in French 1 Zyad: I do know; I can even write Allah (God) [leaving out the final “h” sound] Father: What? Alla (nose)? Zyad: My religion, their religion [of the djin, spirit] Father: The nose? Where is your nose? Zyad: Here is Allah [starting to write in Arabic] [showing that he knows at least Arabic, he does not demonstrate that he can also write French]. Father: Where is your nose? Zyad: In the sky Father (addressing to adults present): I asked him where is his nose and he replied in the sky. [The father looks at the paper where Zyad has written]. Oh, you wanted to write Allah, go on, write Allah. With this excerpt, let me tip you off about a recurrent pattern. In different situations, the status of being a child with psychiatric difficulties influences the value and attention brought by adults – here the father - to the children’s words. In this dialogue, we hear the difficulties of communication that stand between Zyad and his father. The boy who is regarded as not capable of writing or reading, is not taken seriously. Adults think he does not have the social ability to interact capably. Due to a pronunciation trouble which brings about confusion between the word Allah and alla (or nose), the dialogue implies Zyad was not able to read, write, keep focus on one task and have a talk. On the other hand, I, the anthropologist, could talk with Zyad, even if other adults assumed they could not. Essentially, through my articulation of Zyad’s case, I brought to light Zyad’s voice, otherwise lost in hampered communication. 1 (I now wonder if the father knows that at hospital Zyad learns French alphabet and not the Arabic one) The second scene to consider took place a few months prior to this encounter. It occurs during a speech therapy session. Zyad enters the session room without his parents. Not a single word comes out of his mouth. He is carrying his notebook. Dounia, the therapist, greets him. He responds with a quick and discreet head movement. He goes straight to the small desk, showing that he knows what she is expecting from him and what he has to do. He sits down, puts the notebook on the desk and waits. So far, Zyad hasn’t spoken. Dounia faces him and they start to work. She gives the instructions. Zyad follows them with calm and concentration, as he usually does. They keep working at the therapist tasks for 20 minutes. Zyad speaks very little. At the end of the session, Dounia proposes a recreational activity. She gives him a puzzle and turns her chair, away from him. She checks her smartphone. Zyad does the puzzle on his own. It seems easy for him. It is done in a minute. Suddenly he decides to stand up and accidently all the pieces fall on the floor. The therapist looks at him briefly and goes back to her screen. Zyad collects the pieces on the floor. He sits down and completes the puzzle all over again. Again, it is done in a minute. He waits. While looking at her, he puts his hand behind his back to grasp a game from the cupboard. The therapist looks at him briefly, notifying him that he is not allowed to reach the cupboard. He waits, looking at the completed puzzle without moving. He waits, screening the room, seated without moving. After a while, the therapist goes out and comes back with Zyad’s mother. In this situation, Zyad exudes capacity to interact with the therapist. He is not a passive recipient – in face of her silence, he sends a signal through a forbidden act to draw the therapist attention, when as grabbing a game. We can see that he communicates in a non-verbal dynamic, showing that he recognizes imposed limits and acknowledges the possibility of actions he is given during the session. In his own way, he is an active partner, as he and the therapist interact. The final scene happens after the event just described. Dounia fetches his mother who is in the hospital waiting room. The mother enters the session room and straight away the boy’s behaviour changes. The therapist and the mother both sit down at the therapist’s desk, facing each other, the boy still occupying the small desk as before. He starts to gesticulate. He lifts the small desk with his legs, laughs loudly, and sticks out his tongue at us. The therapist notices this shift but takes no step to re-establish the previous quiet. The boy stands up, jumps around and then climbs on his mother. Mother and therapist both ignore him. The therapist explains to the mother what the boy did during the session. The mother listens, nods her head, and occasionally speaks quietly, focusing on the therapist’s talk. Around them, the boy keeps moving and even block his mother’s view at times. She pushes his arm away from her face in order to focus on the therapist. There are three people in the room but it’s a dyadic interaction, and not a triadic one. The therapist and the mother speak together about Zyad and in this adult to adult face-to-face exchange, Zyad is ignored. Children and adults do not command comparable attention. The boy is neither considered nor heard. He has no social space to play his patient’s role, and his non-verbal bids for expression, are disregarded. His behavior, regarded by the adults present as inadequate and inscrutable, is passed over in silence. Discussion In my presentation title, I introduce the term ”silent voices” in reference to children unvoiced communication. By bringing to your ears these stories, I would like to invite us to reconsider mainstream views of illness narrative. The conventional narrative approach mainly focuses an on individual capacity to narrate oneself. Introducing the expression of silent voices, I propose that some voices, perhaps all, require a collective capacity, one that acknowledges the voices even of silent persons during interactions. It is the collective capacity acknowledging persons who sometimes have silent voices that ultimately matters. In the first scene, I described how Zyad can engage in a discussion, whatever the evaluation of his verbal communication skills is. But looking at the interaction, I also see how step by step, indeed with a short time gap, his father acknowledges him and his expressive skills. We can conclude, one need to be a cautious listener. In the second scene, I explained how Zyad is actively creative to bring his thought to his interlocutor. He employs material at his disposal inventively and visibly. The therapist acknowledges him if not as a speaker as an actor with expressive skills. We can conclude, one need to be a cautious observer. Finally, in the last scene, the therapist and the mother talk about Zyad even while ignoring Zyad’s behavior. In that case, Zyad is excluded from the collective conversation and his expressive skills are disregarded. Zyad’s voice is silent in this scene. We can conclude, one need to be both a cautious listener and observer. Silent voices aren’t intentionally mute. They are made silent, made invisible, made muted when unacknowledged. The words can be absent, narrative may not be heard, but voices have potential to intercommunicate as soon as one is in the presence of another. Being a cautious observer and listener gives the opportunity to hear these silent voices and to acknowledge them. In the end, silent voices, as in any of the scenes I’ve mentioned, always occur in a context of interaction, of potential attention given in response. Conclusion To conclude I would say that the difficulty and trouble I experienced to hear and make acknowledge children’s voices invited me to think differently about narratives and language. I have learned that it was not a matter of literally hearing narratives but a matter of acknowledgment. To hear children’s voices encourages me in several ways. First to focus on the collective rather than on individual dimensions of speaking. Second, I am drawn to consider that narration goes beyond language and that it might be interesting to think about it in terms of expressive skills. Third, I am called to formulate that having a voice means being recognized and acknowledged by others, and it implies listening and observing someone’s expressive skills. Through my voice, as an anthropologist, children’s silent voices are hearable. Bibliography BLUEBOND-LANGNER M., 1980. The private worlds of dying children, Princeton University Press. BRADY G., 2014. « Children and ADHD: seeking control within the constraints of diagnosis », Children & Society, 28(3) : 218-230. DAS V., 1989. « Voices of children », Daedalus, 118(4) : 263-294. KLEINMAN A., 1988. The illness narratives: Suffering, healing, and the human condition, Basic books. LAUGIER S., 2010. Wittgenstein: le mythe de l'inexpressivité, Vrin. LEFRANCOIS B. A., 2013. « The psychiatrization of our children, or, an autoethnographic narrative of perpetuating First Nations genocide through ‘benevolent’ institutions », Decolonization: Indigeneity, Education & Society, 2(1). 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