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

与使用自然语言的儿童相比，患有严重肢体残疾的不会说话的儿童对世界的体验不同。由于身体缺陷，这些儿童在社交、玩耍和学习方面的机会有限，对以后的生活构成了重大的社会风险因素。为了回应技术如何减少社会风险因素，通信辅助技术主要侧重于设计能够产生电子语音或支持儿童达到典型发展里程碑的技术。然而，这些技术的放弃率仍然很高，这表明需要重新思考辅助技术如何反映严重身体残疾的不会说话儿童及其社会群体的当代关注。为了应对这些挑战，我的博士论文试图为涉及严重身体残疾的不会说话的儿童的沟通设计提供新的方法。最重要的目标是打破一个被广泛引用的观点，即交流以语言为中心，并通过信息的传递在个人层面上发生。通过一系列实证研究，我的博士研究表明，通过应用承认儿童价值观的多种替代框架、多模式和共同构建的沟通，以新的方式设计数字媒介传播是可能的。我的研究以三种不同的方式为研究和实践提供了新的见解。首先，它为AAC和HCI领域的交际研究提供了一个新的视角，而现有的研究在很大程度上是由语言驱动和缺陷导向的视角主导的。其次，这些发现在研究和设计工作中为“难以接触”的儿童做出了方法论上的贡献。最后，第三，实证研究发现通过识别新的机会和新的方法，将设计纪录片作为在这种背景下激发设计灵感的工具，对设计做出了贡献。在这些发现的基础上，该奖学金将传播我的博士研究成果，并开始通过关注儿童交流体验的表现和设计方式来产生新的讨论。我打算与不断壮大的专业人士网络建立更紧密的联系，这些专业人士来自学术和非学术环境，他们可以提供这些见解，也可以从这些见解中获得信息。为了实现这一目标，在学术界，我将通过在同行评审的期刊和人机交互、增强和替代通信以及多模式通信领域的相关会议记录上发表书面文章来分享我的博士研究成果。在学术界之外，我将与来自特殊教育和主流学校、辅助技术和医疗保健机构的从业人员建立联系。通过一个包含的小项目，制作“一口大小”的视频纪录片，我打算为未来的设计工作产生新的讨论和联系。在此过程中，该奖学金将为我提供令人兴奋的机会，以发展我作为早期职业研究员的技能，并计划进一步的研究，以建立和扩展我在残疾，设计和沟通方面的特定研究兴趣。

Non speaking children with severe physical disabilities experience the world differently compared with children who use natural verbal speech. Connected to their bodily impairments, these children have limited opportunities for social interaction, play and learning, posing significant social risk factors for later life. Responding to how technologies might reduce social risk factors, assistive technologies for communication have largely focused on designing technologies that enable electronic speech generation or supporting children to meet typical developmental milestones. However, the abandonment rate for these technologies continues to be high, which suggests a need for rethinking how assistive technologies might reflect the contemporary concerns of non-speaking children with severe physical disabilities and their social groups.To respond to these challenges, my doctoral thesis sought to inform new ways of designing for communication involving non-speaking children with severe physical disabilities. The overarching goal was to disrupt the widely cited view that communication centres around speech and happens at the level of the individual through the transmission of information. Through a series of empirical studies, my PhD research demonstrated that it is possible to design for digitally mediated communication in new ways by applying multiple, alternative frames that acknowledged children's values, multimodal and co-constructed communication. My research contributed new insights for research and practice in three distinct ways. First, it offered a new perspective for studying communication in the fields of AAC and HCI where existing work has largely been dominated by linguistically-driven and deficit-orientated perspectives. Second, the findings made a methodological contribution for involving 'hard to reach' children in research and design work. Finally, third, the empirical findings contributed to design by identifying new opportunities as well as new ways of using design documentaries as a tool for inspiring design in this context.Building on these findings, this fellowship will disseminate the findings of my PhD research and begin to generate new discussions by focusing on ways of representing and designing for children's communication experiences. I intend to build stronger links with a growing network of professionals from both academic and nonacademic settings who can inform and be informed by these insights.To achieve this goal, within academia, I will share the findings of my PhD research through written publications in peer-reviewed journals and relevant conference proceedings within the fields of human computer interaction, augmentative and alternative communication and multimodal communication. Outside of academia, I will connect with practitioners from special education and mainstream schools, assistive technology and healthcare settings. Through a contained, small project that produces 'bite-sized' video documentaries about the findings, I intend to generate new discussions and connections for future design work. In doing so, the fellowship will offer exciting opportunities for me to develop my skills as an early career researcher and plan for further research that builds on and extends my specific research interests in disability, design and communication.