Nothing to Hide: Aesthetic Customization of Hearing Aids and Cochlear Implants in an Online Community
Halley P. Profita, Abigale Stangl, Laura Matuszewska, Sigrunn Sky, Shaun K. Kane · 2016 · Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '16) · doi:10.1145/2982142.2982159
Summary
This paper analyzes aesthetic customization practices within a Facebook community of over 4,800 members dedicated to decorating and personalizing hearing aids (HAs) and cochlear implants (CIs). Approximately 48 million people in the United States (20% of the population) have some degree of hearing loss, yet HA abandonment rates can approach 75% due in part to sociocultural concerns such as unwanted attention, perceived stigma, and worry about differential treatment. While manufacturers have responded by making devices smaller and easier to conceal, a counter-movement has emerged where users make their devices more visible through aesthetic customization — adding stickers, colorful tape, gems, charms, and other decorations. The researchers analyzed 365 posts from the community over four months (September-December 2015) using open coding, examining post types, customization methods and materials, design themes, and challenges. Posts came from 191 different community members (74.9% female, 3.7% male, 21.5% undisclosed), with a significant proportion (32%) posting on behalf of another person, often parents customizing devices for their children. The community was actively moderated by 10 volunteers who maintained how-to documents, organized themed design contests, and reminded members to provide alternative text descriptions for their photos.
Key findings
The most common post type was sharing customizations (330 of 365 posts, 90%), followed by asking questions (102 posts), sharing advice and resources (25 posts), sharing personal experiences (25 posts), and community building (11 posts). The most popular customization materials were nail art supplies (foils, stickers, wraps — 61 instances), generic stickers (31), gems and rhinestones (30), duct tape (28), tube riders (commercial charms — 27), Washi tape (23), and glitter (21). Customization themes included adding colors, patterns, and textures; celebrating holidays and seasons (59 holiday-themed customizations, with 41 for Christmas and 17 for Halloween); showing favorite fictional characters (36 character-themed designs featuring characters from Frozen, Star Wars, My Little Pony, etc.); matching clothing and nails; celebrating life events (first day of school, weddings); and showing sports team affiliations. Key challenges included finding appropriate materials that would not damage devices, matching customizations to specific device models (118 of 365 posts mentioned specific brands), managing delicate assembly processes with very small components, and limited time and resources. The study found that customization was not merely a response to unattractive devices — community members created multiple designs, seasonal decorations, and matching sets, suggesting the act of customizing itself held intrinsic value as self-expression and identity construction.
Relevance
This research challenges the dominant assistive technology design paradigm of concealment — the assumption that AT should be as invisible as possible. Instead, it reveals a thriving practice of deliberate visibility where users transform their devices from medical-looking objects into expressive accessories. For accessibility practitioners and AT designers, this has concrete implications: devices should be designed with replaceable skins and covers, provide clear documentation about which surfaces can safely be decorated, offer templates or 3D models for custom add-ons, and avoid placing functional components (microphones, battery doors) in areas users want to decorate. The study also highlights the importance of online communities in assistive technology adoption — the community served as a source of practical knowledge, emotional support, and motivation to wear devices. The finding that many posts came from parents trying to convince children to wear their HAs or CIs underscores how aesthetic acceptability directly impacts device adoption and, ultimately, hearing accessibility. This represents a shift from a medical model (AT restores missing function) toward a social model (AT becomes part of identity and self-expression).
Tags: hearing aid · cochlear implant · DIY assistive technology · social accessibility · disability identity · online communities · self-expression · deaf and hard of hearing · disability culture