Life as an International Computer Science PhD Student with Cerebral Palsy
Tianchi Mo, Humphrey Curtis, Timothy Neate · 2025 · ASSETS 2025: 27th International ACM SIGACCESS Conference on Computers and Accessibility · doi:10.1145/3663547.3749835
Summary
This paper presents a longitudinal autoethnographic study of Tianchi, an international PhD student with cerebral palsy (CP) navigating the final stages of his doctoral journey in Computer Science at Stony Brook University. Born in China in 1990, Tianchi experienced medical negligence at seven days old that caused his CP, resulting in high muscle tension and profound mobility and speech impairments. A cervical spondylosis in 2016 further worsened his condition, substantially limiting his upper extremity function. Using a structured questionnaire-based diary method over one month (28 daily entries from February to March 2025), the study captured daily reflections on Tianchi's everyday life, assistive technology use, and communication experiences. The questionnaire covered three domains: general daily assessment (Likert-scale ratings of daily quality and environment accessibility), assistive technology usage (itemized list of daily AT and healthcare resources), and communication experiences (social dynamics, peer relationships, communication methods used). The data was analyzed through mixed methods combining qualitative thematic analysis (using Taguette and Miro for coding 636 discussion instances) with quantitative analysis of Likert ratings and technology usage frequencies. The research represents the first autoethnographic study specifically exploring the lived experiences of someone with CP who uses AAC devices.
Key findings
Three overarching themes emerged from the analysis. First, Tianchi demonstrates remarkable resilience through technical proficiency and creative adaptations of mainstream technologies. He extensively uses remote desktop software (Splashtop, mentioned 55 times) to control his Windows desktop from his MacBook, types with one finger on his iPhone's smaller keyboard rather than a standard keyboard, leverages ChatGPT (20 mentions) to convert pseudocode into runnable code, and uses auto-mode in mobile games as an accessibility workaround. Second, the hidden labour of communication challenges significantly complicates his access to community support. Tianchi experiences dysarthria that impacts speech clarity, especially in English, and must invest weeks scripting and fine-tuning a 40-minute synthetic voice presentation — dividing a 5,900-word script into roughly 50 segments with careful pacing and pronunciation adjustments. Phone calls to university services frequently break down due to speech intelligibility issues. Third, his reliance on both his father (sole caregiver due to COVID travel restrictions) and technology exposes fragile interdependencies — including tensions around autonomy, privacy, and the emotional and financial costs of assistive tools. Tianchi pays for most of his assistive technologies himself (Splashtop $18.45/year, Grammarly $72/year, Natural Reader $119/year), describing the cumulative costs as "simply too expensive."
Relevance
This autoethnography offers rare first-person insight into the daily realities of living with CP in an academic computing environment, a perspective almost entirely absent from the HCI and accessibility literature. For accessibility practitioners, several findings are immediately actionable. The observation that mainstream technologies often provide more practical accessibility value than purpose-built assistive tools — remote desktop software, predictive text, auto-mode in games, generative AI — challenges conventional assumptions about AT design and procurement. The documentation of how small design inconsistencies across platforms (differing auto-deletion of spaces, absent typing suggestions, incompatible Sticky Keys support) create disproportionate burden for users with motor impairments is a powerful argument for cross-platform consistency in accessibility features. The financial burden of assistive technology subscriptions highlights the need for institutional support programs. The study also advances methodology, demonstrating how autoethnography can surface insights about daily AT use, communication labour, and caregiver dynamics that survey or interview studies would miss. Limitations include the single-participant focus and the potential disconnect between high self-reported Likert scores and the challenges documented in qualitative entries.
Tags: cerebral palsy · autoethnography · assistive technology · augmentative and alternative communication · graduate education · lived experience · motor impairment · communication barriers