"Wear It Loud": How and Why Hearing Aid and Cochlear Implant Users Customize Their Devices
Halley P. Profita, Abigale Stangl, Laura Matuszewska, Sigrunn Sky, Raja Kushalnagar, Shaun K. Kane · 2018 · ACM Transactions on Accessible Computing (TACCESS) · doi:10.1145/3214382
Summary
This paper investigates why and how hearing aid and cochlear implant users aesthetically customize their devices, exploring the intersection of assistive technology, identity, and social acceptability. The research addresses a significant problem: hearing aid abandonment rates approach 75%, with social stigma identified as a primary reason in one-third of studies examining nonuse. Rather than concealing devices—the traditional approach—some users have responded by making their assistive technology more visible and expressive. The researchers conducted two complementary studies. First, they analyzed 365 posts from a Facebook community of nearly 5,000 members dedicated to customizing hearing aids and cochlear implants, collected over four months (September-December 2015). The analysis examined post types, customization themes, materials used, and community interactions including 696 comments on 102 question posts. Second, they conducted semi-structured interviews with 10 participants (ages 17-62) who customize devices, including end-users, caregivers who customize for children, and developers who sell customized accessories. The online community was predominantly female (143 women vs. 7 men among those who disclosed gender) and notably inclusive—community guidelines required alternative text descriptions for images, acknowledging that some members had vision impairments. Nearly half of posts (48.5%) involved customizations made for others, particularly children, reflecting the caregiving dimension of this practice.
Key findings
Community members used diverse materials for customization: nail art and wraps (mentioned 61 times), generic stickers (31), adhesive gems (30), duct tape (28), tube riders/charms (27), washi tape (23), and glitter (21). Customization themes included adding colors and patterns, celebrating holidays and seasons (59 posts, with Christmas most popular at 41), featuring favorite characters from popular culture (36 designs including Frozen, Minions, and Star Wars), coordinating with clothing or nail polish, and marking life milestones like first days of school or weddings. Interview findings revealed eight motivations for customization: (1) Demonstrating Agency—taking control over technology choices when commercial options are limited; (2) Self-Expression—conveying personality, interests, and creativity; (3) Pride and Confidence—shifting from hiding devices to wearing them proudly; (4) Disability Advocacy—using visible devices to raise awareness and challenge stigma; (5) Communication Signaling—making hearing loss visible so others adjust their communication; (6) Caring for Others—supporting children or students through personalized devices; (7) Encouraging Adoption—generating excitement that increases willingness to wear devices; and (8) Community Building—participating in supportive networks of like-minded customizers. Participants described transformative effects: one teacher noted students "rarely refuse to wear their devices" after decorating them, and another described reactions shifting from "unwanted attention" to "compliments." Some participants explicitly connected customization to disability pride, with one stating she wanted to "be proud of them... I shouldn't have to hide the fact I need hearing aids."
Relevance
This research has significant implications for assistive technology design and disability studies. The finding that users actively resist the concealment paradigm—historically dominant in AT design—suggests manufacturers should offer more customization options rather than solely pursuing miniaturization. The paper documents a shift from the medical model (hiding disability) toward the social model (celebrating difference) enacted through material practice. For accessibility practitioners, the research highlights how aesthetic considerations intersect with adoption and consistent use. If attractive, personalized devices reduce abandonment rates, then customization support becomes an accessibility intervention. The predominantly female, caregiver-involved nature of this community also reveals how AT use is embedded in family and educational contexts rather than being purely individual. The online community dynamics offer a model for peer support in AT adoption. The active moderation, inclusive practices (alt text requirements), and knowledge sharing (160 comments discussing materials, 119 discussing methods) demonstrate how communities can scaffold DIY AT practices. The fact that four interview participants had progressed from personal customization to selling accessories shows potential economic pathways emerging from these communities. The study's limitations include its focus on a single online community and predominantly female sample, leaving questions about why men are underrepresented and whether findings generalize to other AT domains. Nevertheless, the research establishes that aesthetic customization serves multiple psychological, social, and practical functions that AT designers and clinicians should consider.
Tags: hearing aids · cochlear implants · deafness · DIY assistive technology · social acceptability · stigma · self-expression · online communities · identity