Because of its extreme rarity, the genetic disease arthrogryposis multiplex congenita (AMC) and the needs of individuals with the diagnosis are often overlooked. AMC refers to the development of nonprogressive contractures in disparate areas of the body and is characterized by decreased flexibility in joints, muscle atrophy, and developmental delays. Colton Darst, a seven-year-old boy from Indianapolis, Indiana, was born with the disorder, and since then, he has undergone numerous surgical interventions and continues to receive orthopedic therapy to reduce his physical limitations. His parents, Michael and Amber Darst, have hopes for him to regain his limbic motion and are very open to trying out new assistive devices that would promote independent utilization and potentially help him participate in activities with minimal assistance.
This reflective essay aims to elaborate on and evaluate the human-centered design project I worked on with my EPICS Assistive Technology team and the community impact fostered by it. Our service-driven and product design project places emphasis on a family hobby that Colton wishes to be able to take part in—fishing. As a result of his condition, it is difficult for him to engage in this and similar activities, preventing him from connecting with his family and peers at a more physical level. By conducting prototyping of different autonomous systems on a device, implementing hardware programming on electrical control systems, and engaging in research and experimentation of computer-aided designs, my team and I were able to engineer and tailor to Colton’s specific needs a high-functioning assistive device that compensates for his lack of muscular mobility, allowing this project to serve as a medium through which I could integrate and channel my knowledge of physiology and mechanics and take a step forward on the journey toward innovating and revolutionizing health care technology.
Additionally, this essay discusses a variety of aspects related to the bridges between empathy, innovation, service-learning, and human-centered design, and, despite its limitations, the ways our service project is helping to alleviate the problem that not only Colton, but so many others are currently facing. Similarly, the essay also outlines the impact this experience has had on me, in the context of my direct contribution to improving quality of life and raising awareness of arthrogryposis multiplex congenita at the emotional, societal, and professional levels. Given the promising impact that we all can make, it is important to contribute to paving the way and helping lead Colton and those like him toward empowerment, inclusivity, and opportunity.
"Creating Reel Designs: Reflecting on Arthrogryposis Multiplex Congenita in the Community,"
Purdue Journal of Service-Learning and International Engagement: Vol. 8
Available at: https://docs.lib.purdue.edu/pjsl/vol8/iss1/2
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