The Lived Experiences of Adults who Acquired Motor, Mobility, and/or Communication Disabilities: Identity Changes and Creative Pursuits

Abstract

Adults who acquire complex motor, mobility, and/or communication disabilities (MMCD), such as spinal injuries or amyotrophic lateral sclerosis (ALS), often rely on assistive technologies (AT) for daily living. Many of these individuals experience profound changes in their lives as a result of acquiring their disability. Adults with complex MMCD who use AT often experience a decrease in opportunities for active engagement and participation, which can ultimately result in poor mental and physical health. As a result, overall quality of life can be perceived to be diminished. While research has shown that access to creative pursuits has positive impacts on typically aging older adults and adults with chronic health conditions, little is known about how active engagement in creative pursuits impacts adults with acquired MMCD who use AT outside of directed therapeutic programs. Creativity is a fundamental human need, however, accessing creative pursuits can be challenging for adults who acquire MMCD and use AT. In this dissertation, I explore how access to creativity impacts the perceived quality of life of adults who acquire MMCD and use AT. First, I examine the experiences of adults who acquire MMCD mid-career, and demonstrate that adults who acquire MMCD and use AT want to continue to be mentally engaged even after leaving their careers. However, adults who acquire MMCD and use AT, particularly those with progressive health conditions, require activities that are flexible without set time pressures. I also show that options for alternatives to work that are accessible to adults with MMCD who use AT are not well-known. I then explore the experiences of seven adults who acquired MMCD and use AT who have engaged in accessible creative pursuits outside of directed therapeutic programs. I demonstrate that engaging in creativity can lead to the formation of a positive creative identity which has a positive impact on perceptions of quality of life. I also show that the discoverability of accessible creative pursuits is challenging, and the lack of discoverability and access to creative pursuits can negatively impact the reclamation of a positive creative identity. In this dissertation, I provide two methodological contributions. First, I synthesize literature and my own experiences to establish a framework of qualitative research best practices when working with participants who use AAC. Second, I create the Aligned Co-Design method, an accessible co-design method in which adults with MMCD who use AT can engage in co-design research equitably. The dissertation concludes with a discussion of the role accessibility has in quality of life. I propose that accessibility should be explicitly recognized as a fundamental human need. Access to creative pursuits can have profound positive impacts on an individual’s perceptions of identity, health, social connections, and overall quality of life.