"An Old Bastard in Bright Orange Satin!": Zuzenna's Aphasia Diary: And Lessons Learned from DIY Augmentative and Alternative Communication
Humphrey Curtis, Filip Bircanin, Timothy Neate · 2025 · ASSETS 2025: 27th International ACM SIGACCESS Conference on Computers and Accessibility · doi:10.1145/3663547.3746369
Summary
This paper presents a four-month qualitative study of Zuzenna, a stroke survivor living with aphasia in North London, and her self-made DIY communication diary that serves as an augmentative and alternative communication (AAC) device. Against a backdrop of widespread AAC abandonment—particularly among people with aphasia who find prescribed devices expensive, stigmatizing, poorly personalized, and overly complex—the researchers studied Zuzenna's bottom-up, organically evolving diary rather than designing a new top-down intervention. The study comprised four parts: preliminary interviews with artifact analysis, homework tasks documenting diary use outside the research setting, an immersive 360-degree video-recorded interview with conversation analysis, and an envisioning co-design workshop exploring potential AAC features. Zuzenna became non-verbal with limited working memory after her stroke but retained the ability to write and draw. Encouraged by a friend in the hospital ward, she began creating a low-tech communication diary that has grown into a rich, multimodal artifact incorporating handwriting, colorful artwork, collaged physical objects (medication wrappers, seed packets, chocolate boxes), phonetic transcriptions, and stored documents like advocacy letters from her speech and language therapist. The diary serves not only as a communication tool but as an artistic medium, memory aid, rehearsal space for upcoming conversations, and emotional processing outlet.
Key findings
Three overarching themes emerged from thematic and conversation analysis of 677 coded discussion instances. First, the diary is shareable and mediates communion—it controls conversational pacing and flow by serving as a temporal anchor, endorses serendipitous discoveries that spark unexpected conversations, and functions as an ecosystem of material support incorporating smartphones, handwritten notes, and stored documents. Second, the DIY diary empowers expression and multimodal creativity via repurposed materials—Zuzenna expresses herself through art, handwriting, and collaging; the diary demonstrates her talent and competence to others; familiarity with the diary minimizes the burden of fluency through rehearsal; and it grounds her temporally random "jumpies" (out-of-sequence thoughts). Third, the diary viscerally conveys the labour and growth of adjusting to post-stroke identity—tangibly reinforcing progress from early pages where she couldn't say "hospital" to current fluent conversations, supporting storytelling of her post-stroke chronology, invigorating memory, and providing space for processing frustration and exasperation. In the envisioning workshop, Zuzenna ranked "colorful" as the most important AAC feature and word prediction as the least valuable, emphasizing "I want my own words." She also rejected printing, AI summarization, and robustness in favor of personal ownership, creative labor, and uniqueness.
Relevance
This research offers a powerful counter-narrative to dominant AAC design paradigms that prioritize technological sophistication and scalability over personal meaning and agency. For accessibility practitioners, the key takeaway is that AAC does not need to be techno-centric or expensive to be effective—it needs to be personal. The paper identifies three design principles for future AAC: fostering genuine communion through shareability (the diary naturally invites others to engage), upholding agency by empowering self-expression rather than replacing it with algorithmic predictions, and valuing personal labor and supporting growth rather than treating customization as a one-time setup. Zuzenna's strong rejection of word prediction and AI summarization should give pause to designers pursuing AI-enhanced AAC, as these features risk overriding users' voices and diminishing the meaningful creative effort that builds identity and connection. The study also highlights the economic dimension—UK austerity cuts to disability benefits directly limit access to prescribed AAC devices, making low-cost DIY approaches not just a preference but a necessity.
Tags: aphasia · augmentative and alternative communication · DIY assistive technology · single-subject study · stroke recovery · self-expression · empowerment · qualitative research