Zuzenna's Diary

Researcher and participant seated at a round table, diary open between them and a video camera on a tripod recording the session

Paper

Most AAC technologies are widely abandoned — particularly among people with aphasia. The barriers are well documented: complex personalisation, social stigma and devices costing thousands of pounds. Critics argue that AAC reflects top-down, medicalised models shaped by commercial agendas rather than lived experience.

Zuzenna is a stroke survivor living with aphasia — and an outlier. Rather than abandoning AAC, she created her own: a self-made communication diary built from photographs, cut-outs, hand-drawn symbols, ticket stubs and memorabilia — entirely on her own terms.

Open diary spread showing STROKE APHASIA REHAB written in large colourful letters — An early spread documenting Zuzenna's stroke and rehabilitation — written in her own hand, in her own colours

A four-month qualitative study (December 2024 – March 2025) drawing on conversation analysis, video footage and an envisioning workshop. Monthly sessions analysed the diary across everyday scenarios: ordering coffee, medical appointments, storytelling, advocacy. Video recordings revealed moment-by-moment detail — how searching for a word naturally slowed conversation, signalling her partner to pause without Zuzenna needing to say a word.

Zuzenna's hands holding open the diary, showing pages about MRI scans and rehabilitation exercises — Zuzenna navigating her diary during a session — the diary functioned as a memory aid, communication board and personal record simultaneously

Study timeline showing the four-month diary process — Study timeline: four months, monthly sessions, conversation analysis, photography and video as primary methods

The diary was added to, rearranged and annotated across sessions — recording therapy contacts alongside jazz nights, music, friends and travel. Crucially, it is non-stigmatising: to an uninitiated observer it appears as nothing more than a notebook, blending naturally into social environments without drawing attention.

Diary page showing a colourful sticker: Strong Coffee! Milk, a Little Sugar, Hot Water — A coffee order sticker — one of dozens of everyday communication pages Zuzenna created for real-world use

Zuzenna flipping through pages of her communication diary — The ecology of materials: photographs, cut-outs, stickers, hand-drawn symbols — all integrated across the diary's pages

Photography documented improvised fixings, layered media and the way colour and scale signal meaning. In the envisioning workshop, Zuzenna ranked colourful as the most important AAC feature. The diary's familiar book format generates intrigue — inviting communication partners to explore and ask questions, with Zuzenna positioned as the storyteller.

Selotape and paper artifacts from the diary — Found materials and improvised fixings — the diary's material honesty

Diary pages showing music notes, jazz references and the phrase 'I now have a love who is a real friend' — Music, friendship, identity — the diary recorded Zuzenna's cultural life alongside her clinical history

Diary showing days of the week written large, BBC Radio 4 Extra, Pixies, Blues Jam — Temporal orientation and cultural anchors: days of the week, radio programmes, jazz nights

Diary spread with GRATEFUL written in large red letters surrounded by names and notes in multiple colours — Emotional expression at scale — gratitude, not as a clinical measure, but as a statement

Diary spread showing MALAYSIA SARAWAK, ORGASM, MERLIN, BLUES JAM, SAXOPHONE in vivid coloured text, with Zuzenna's hands in frame — Travel memories, music, unexpected word choices — the diary was a record of a full life, not just an impairment

Analysis identified three themes. Fostering communion: unlike commercial AAC, the diary can be physically handed to others — acting as a conversation starter and inviting participation. Expression and agency: Zuzenna insisted on absolute authority over the diary, firmly rejecting printing or duplication — contrasting sharply with standard AAC prescription, where professionals often edit devices without the user's awareness. Valuing personal labour: the pages trace the arc of recovery — from early coffee-order stickers to letters advocating for improved housing in her borough. We caution against AI-driven AAC that erases this labour by reframing entries to algorithmic norms rather than preserving individual voice.

Artistic elements within the diary — Artistic elements woven through the diary pages

Coffee order communication page from the diary — A page supporting ordering coffee — one of many real-world communication scenarios

Envisioning workshop with participants — Envisioning workshop exploring future directions for DIY AAC

Zuzenna's diary shows that AAC does not have to be techno-centric or expensive to be powerful — it just needs to be personal. Presented at ASSETS 2025 in Denver. The video figure below was shown as part of the presentation.