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Narrative 5: Locked-in, locked-down: lived experience of a non-speaker

In: Research Handbook on Disability Policy

Author

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  • Tim Chan

Abstract

My earliest memories were a huge jumble of confusion, with numerous challenges figuring out my world. Being diagnosed with locked-in syndrome at 14 confirmed what I’ve always known; that I had the potential to learn and understand the world. Given the necessary support and encouragement to learn at my own pace, the tide began to turn. With better understanding of the world and people, I gradually enjoyed participating in new experiences. Facilitated communication opened many doors, including the ability to “talk” to people with a voice-generating device. I became able to connect with people, participate more fully in social activities and do things most people take for granted like go to mainstream school, to emerge into a new life as a person in my own right. I’m seeing that inclusion derives from the ability to empathise and identify with people with differences.

Suggested Citation

  • Tim Chan, 2023. "Narrative 5: Locked-in, locked-down: lived experience of a non-speaker," Chapters, in: Sally Robinson & Karen R. Fisher (ed.), Research Handbook on Disability Policy, chapter 18, pages 233-233, Edward Elgar Publishing.
    • Handle: RePEc:elg:eechap:20096_18
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