Person-centred Inclusive Design for Co-creation of Accessible Digital Musical Instruments and Supports: Inclusive Creativity for and with People with Disabilities, including Severe Acquired Brain Injury

This practice-based PhD project takes an Emergent Inclusive Participatory Design approach to address the significant issue of assistive technology (AT) abandonment. 50% of all AT will be abandoned within the first 5 years of use (Petrie et al., 2018). The research sought to investigate whether participatory methods could reduce this by involving the users in designing and implementing the AT, both at an organisational and individual level. The Literature Review included not only studies of the published results of previous researchers in this area, but also considered the state of the art in AT for People with Disabilities (PwD) and a range of previous attempts to apply participatory research. Frequently, users have had negative experiences with AT that did not work consistently or easily for them, revealing frustrations and also some instances of participants feeling responsible for the AT's ‘failure’. This kind of negative experience can lead to a reluctance to try new AT, leading to PwD returning to familiar but limited technology. Part of this research was to explore whether the use of music could be used to motivate these users to re-engage with AT by having positive and motivating experiences.
Two case studies with Irish Charity Organisations were used to investigate these issues. Both of these case studies used practice-based participatory inclusive design and co-design methods, with mixed methods data collection. The first case study with Enable Ireland focused on an organisational level. In this case study, the researcher contributed to the creation of a music curriculum for use by the teachers in the special schools. This case study revealed interesting insights at an organisational level of the challenges and sustainability of working with AT and, more specifically, accessible music technology. Case Study 2 with An Saol focused on an individual level and also employed emergent design, allowing the researcher to respond to the new insights. The research found that by using the principles of participatory design in the co-creation of accessible digital musical instruments (ADMI) prototypes for PwD, that the act of co-creating these resources builds trust between researchers and co-participants, leading to a deeper insight into the lives of PwDs and their families and other support networks. Through this iterative process of emergent inclusive design praxis, conducted over eleven sessions over several years, invisible barriers to effective AT were uncovered, while also witnessing remarkable moments when the user demonstrated abilities and expressed themselves in ways that had not been seen since their accident over a decade ago. Original contributions of the thesis include a toolkit for designing music programmes for children with disabilities, a set of novel ADMI prototypes for use with extreme users with severe acquired brain injury, contributions towards a new theory of socially and empathetically engaged inclusive participatory co-design methods, data sets (interviews, survey et al), a set of research principles for use by future researchers, and a new draft curriculum for training allied health professionals in Physical, Emotional and Neurorehabilitation in Ireland, to be utilised in a new Joint Research Centre being developed, with this study at its centre. The thesis is offered as an original and substantial contribution to the fields of knowledge of Inclusive Design, Creative Technology Innovation & Assistive Technology.