Cyborg Pride: Self-Design in e-NABLE
Peregrine Hawthorn, Daniel Ashbrook · 2017 · Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS) · doi:10.1145/3132525.3134780
Summary
This experience report documents the journey of Peregrine Hawthorn, born without fingers on his left hand, from being a recipient of a 3D-printed e-NABLE prosthetic hand to becoming an active designer, fabricator, and advocate for self-efficacy within the e-NABLE community. e-NABLE is a global, loosely coordinated volunteer network of 3D-printing enthusiasts who design, customize, fabricate, and deliver open-source upper-limb assistive devices — primarily to children, but also to adults. The community, centered on a Google+ forum with over 9,800 members, includes recipients, parents, 3D printing hobbyists, medical professionals, and device designers who share designs through repositories like Thingiverse. Peregrine received his first hand at age 18 — a Snap-Together Robohand that was functional but poorly fitting, fragile, and uncomfortable. Through iterative modification using hacksaws, boiling water, and eventually 3D modeling software (Blender, TinkerCAD, Solidworks, Fusion 360), he progressively refined his devices across multiple jobs: theater set building, FedEx package sorting, AmeriCorps disaster recovery, and event setup. Each job served as a testing ground for new iterations. His current hand, a heavily customized Osprey design, uses ABS plastic parts that are sanded, heat-treated, and acetone-vapor-smoothed, then mounted on leather with machine screws. Task-specific modifications include rubber-insulated fingers for electrical work, claws for fine manipulation, thickened sections for hammering, and a flashlight mount for backstage work.
Key findings
The paper surfaces several important insights about DIY assistive technology and user agency. First, self-design removes the social barrier that prevents many recipients from requesting customization — when someone else makes your device for free, asking for changes feels like imposing, especially for children whose communication is mediated through parents. When users design for themselves, they can iterate endlessly on both function and aesthetics. Second, aesthetic customization serves a profound social function: for children, transforming from "the kid with the weird hand" to "the kid with the cool robot hand" can reverse social exclusion. Peregrine's own devices are deliberately designed to celebrate rather than hide his limb difference, with bright colors, embossed personal symbols, and gear-shaped finishes. The concept of "cyborg pride" emerges as the paper's central contribution — the idea that designing and maintaining one's own prosthetic body parts fosters self-efficacy, independence, and a positive relationship with disability identity. Peregrine describes becoming "my own project," a prototype to be continuously refined. The paper also documents practical design knowledge: comfort under sustained stress is paramount, leather must separate 3D-printed plastic from skin, and all components must be easily sourced from hardware stores to enable broad community replication.
Relevance
This first-person account challenges the traditional assistive technology paradigm where professionals design and deliver devices to passive recipients. It makes a compelling case that user self-design — enabled by affordable 3D printing and open-source sharing communities — can produce better-fitting, more personalized devices while simultaneously building self-efficacy and positive disability identity. For accessibility practitioners and AT designers, the key lesson is that customization and user agency are not luxuries but essential features. The paper also raises important questions about the e-NABLE model: while media coverage has been extensive, little follow-up data exists on long-term device use, and a related study found that five e-NABLE recipients did not use their prostheses regularly. The tension between clinicians' "do no harm" ethics and makers' rapid iteration philosophy remains unresolved. Still, the experience report powerfully illustrates how maker culture and disability identity can intersect to create something greater than functional assistance alone.
Tags: 3D printing · DIY assistive technology · prosthetics · disability identity · self-determination · open source · participatory design · limb difference · maker culture