Designing for the "Universe of One": Personalized Interactive Media Systems for People with the Severe Cognitive Impairment Associated with Rett Syndrome

The needs and capabilities of a person with severe disabilities are often so specific that designing for the person is like designing for a "universe of one." This project addresses this problem for women with Rett syndrome, a disorder accompanied by severe cognitive, communication, and motor impairment. The research team adapted participatory design techniques to work with five such women, and their families, to design and evaluate new assistive technology for these women. The process suggests a class of media-playing devices that would be generally useful to women with Rett syndrome: systems that can load multiple audio or video segments; be activated by many different switches; and respond instantly to switch-hits. As well, the systems should permit a caregiver to set the start and end time of each segment, and how the system advances through a sequence of segments. The paper also discusses patterns that were observed when collaborating with the families. For example, parents shared longstanding but untried ideas for new assistive technology; and expressed a strong interest in any device that would help their daughters do things for themselves.