Micro-ethics for participatory design with marginalised children

Marginalised children are uniquely vulnerable within western societies. Conducting participatory design research with them comes with particular ethical challenges, some of which we illustrate in this paper. Through several examples across two different participatory design projects (one with autistic children, another with visually impaired children), we reflect on the often overlooked tensions on the level of micro-ethics. We argue we are often required to rely on multiple moral frames of references. We discuss issues that the immediate interaction between researchers and marginalised children in participatory projects can bring and offer an understanding of how micro-ethics manifest in these collaborations. We contribute to a theoretical exploration of ethical encounters based on empirical grounds, which can guide other researchers in their participatory endeavours

Strangers in the Room: Unpacking Perceptions of 'Smartness' and Related Ethical Concerns in the Home

The increasingly widespread use of 'smart' devices has raised multifarious ethical concerns regarding their use in domestic spaces. Previous work examining such ethical dimensions has typically either involved empirical studies of concerns raised by specific devices and use contexts, or alternatively expounded on abstract concepts like autonomy, privacy or trust in relation to 'smart homes' in general. This paper attempts to bridge these approaches by asking what features of smart devices users consider as rendering them 'smart' and how these relate to ethical concerns. Through a multimethod investigation including surveys with smart device users (n=120) and semi-structured interviews (n=15), we identify and describe eight types of smartness and explore how they engender a variety of ethical concerns including privacy, autonomy, and disruption of the social order. We argue that this middle ground, between concerns arising from particular devices and more abstract ethical concepts, can better anticipate potential ethical concerns regarding smart devices.Comment: 10 pages, 1 figure. To appear in the Proceedings of the 2020 ACM Conference on Designing Interactive Systems (DIS '20

Seeing and inviting participation in autistic interactions

What does it take to see how autistic people participate in social interactions? And what does it take to support and invite more participation? Western medicine and cognitive science tend to think of autism mainly in terms of social and communicative deficits. But research shows that autistic people can interact with a skill and sophistication that are hard to see when starting from a deficit idea. Research also shows that not only autistic people, but also their non-autistic interaction partners can have difficulties interacting with each other. To do justice to these findings, we need a different approach to autistic interactions—one that helps everyone see, invite, and support better participation. I introduce such an approach, based on the enactive theory of participatory sense-making and supported by insights from indigenous epistemologies. This approach helps counteract the homogenising tendencies of the “global mental health” movement, which attempts to erase rather than recognise difference, and often precludes respectful engagements. Based in the lived experiences of people in their socio-cultural-material and interactive contexts, I put forward an engaged—even engaging—epistemology for understanding how we interact across difference. From this perspective, we see participatory sense-making at work across the scientific, diagnostic, therapeutic, and everyday interactions of autistic and non-autistic people, and how everyone can invite and support more of it

Finding resilience through music for neurodivergent children

This research paper presents a collaborative effort to design a music-making tool that seamlessly blends enjoyment with accessibility, specifically tailored to meet the needs of children with diverse abilities including those who are neurodiverse and have varying musical abilities. The study's primary objective is to provide support to children who encounter challenges in learning traditional musical instruments or who have sensory processing issues and learn their experience of using this tool. Additionally, the research explores the potential role of music therapy in this context, with a focus on how the designed tool can serve as an ideal platform for fostering creativity and self-regulation among children. Qualitative research methods, namely participatory design and cooperative inquiry, were employed to develop and refine different aspects of the music-making tool iteratively. Active involvement and feedback from the primary participants, comprising children with diverse abilities and a music therapist, played a central role throughout the tool's development process. The findings indicate that children responded positively to the technology, revealing diverse applications in music education, therapy, and play. Furthermore, this study identified valuable opportunities for immediate improvements in the robot's design to enhance its overall usability and effectiveness in catering to the needs of its users. The collaborative design approach and the integration of music therapy perspectives demonstrate significant potential for advancing inclusive music education, play and therapeutic interventions for children with diverse abilities

Communication and Non-Speaking Children with Physical Disabilities: Opportunities and Reflections from Design-Oriented Research

This thesis presents a series of design-oriented studies for investigating and describing communication involving children with severe speech and physical impairments (SSPIs). The overarching goal is to inform how designers conceptualise communication that involves children with SSPIs beyond a widely cited view that communication centres around speech and happens at the level of the individual through the transmission of information. Instead, by positioning communication as co-constructed, situated and multimodal, the goal is to stimulate how one designs for digitally mediated communication by applying multiple, alternative frames that acknowledge these features. In order to achieve this goal, qualitative empirical fieldwork is undertaken that examines the everyday communication experiences of five children who have SSPIs. Drawing on theoretical influences from multimodal social semiotics and participatory design, study one and two investigate child centred accounts of communication involving children with SSPIs and their peers. The focus is on investigating communication, first in formal learning contexts involving existing augmentative and alternative communication (AAC) technologies, then in broader contexts beyond AAC use. Multi-layered perspectives are generated that consider: 1. a child’s view, by attending to children’s values and choices of modes; 2. an interactional view that attends to how communication is co-constructed in situ with other people and material objects, and; 3. a structural view, that examines the orderings of people, material objects and activities within an environment. These layered understandings produce research frames that are then utilised in study three. A design documentary is created and used to motivate design work for supporting face to face communication involving children with SSPIs and their peers with a team of designers who do not hold fixed orientations to designing assistive technologies. The findings of the three studies make three new contributions to the fields of HCI and AAC. First, the findings produce a theoretical perspective on communication, acknowledging multiple modes and displacing the taken for granted centrality of language. Second, the findings reveal design opportunities for new and existing technologies. Third, the studies contribute methodological insights for design work by considering ways of involving both children and designers when designing with and for children with SSPIs

Real-time 3D Graphic Augmentation of Therapeutic Music Sessions for People on the Autism Spectrum

This thesis looks at the requirements analysis, design, development and evaluation of an application, CymaSense, as a means of improving the communicative behaviours of autistic participants through therapeutic music sessions, via the addition of a visual modality. Autism spectrum condition (ASC) is a lifelong neurodevelopmental disorder that can affect people in a number of ways, commonly through difficulties in communication. Interactive audio-visual feedback can be an effective way to enhance music therapy for people on the autism spectrum. A multi-sensory approach encourages musical engagement within clients, increasing levels of communication and social interaction beyond the sessions.Cymatics describes a resultant visualised geometry of vibration through a variety of mediums, typically through salt on a brass plate or via water. The research reported in this thesis focuses on how an interactive audio-visual application, based on Cymatics, might improve communication for people on the autism spectrum.A requirements analysis was conducted through interviews with four therapeutic music practitioners, aimed at identifying working practices with autistic clients. CymaSense was designed for autistic users in exploring effective audio-visual feedback, and to develop meaningful cross-modal mappings of musical practitioner-client communication. CymaSense mappings were tested by 17 high functioning autistic participants, and by 30 neurotypical participants. The application was then trialled as a multimodal intervention for eight participants with autism, over a 12-week series of therapeutic music sessions. The study captured the experiences of the users and identified behavioural changes as a result, including information on how CymaSense could be developed further. This dissertation contributes evidence that multimodal applications can be used within therapeutic music sessions as a tool to increase communicative behaviours for autistic participants

SENSHOME. ARCHITETTURA E SENSIBILITÀ ATIPICHE / ARCHITECTURE AND ATYPICAL SENSITIVITIES

Il libro presenta gli esiti di una ricerca internazionale finanziata dall’Unione Europea, sull’abitare delle persone con diagnosi di autismo, proponendo alla riflessione della progettazione architettonica un tema finora affrontato prevalentemente da altri ambiti del sapere e del progetto. Accogliendo non solo i presunti deficit ma anche le competenze e capacità di creazione di significato e narrazioni delle persone nello spettro autistico, la relazione tra architettura, autismo e neurodivergenze in generale, si rivela l’occasione per espandere punti di vista e possibilità dell’architettura più che limitarli, trascendendo convinzioni e convenzioni prevalenti