There are quite a few stories of Alzheimer’s told in first person now. The latest addition to the genre is Richard Taylor’s Alzheimer’s: from the Inside Out (2006). All the autobiographies have something in common – they are all written from the perspective of someone with early-onset (under 65). This means the stories and lives tend to feel ripped unfairly from lives thick with work, children, and community when diseases associated with aging are still thought to be uncommon. This means, of course, that we still don’t tend to hear the voices of people in their 80s – whose situations are unique.
Richard Taylor’s book stands apart from the field in some important ways. His is the voice of activism. Almost all the authors say they want their book to be useful to people – particularly for those going through the experience. But Taylor aims to do more. He wants to change systems. He wants to influence where research dollars go; attitudes toward dementia; and diagnostic procedures. I think he’s going to be the one – and others who follow him – to bring the dementia field to the civil rights approach that the disability rights movement has championed. Taylor is a voice that insists “nothing about us without us!” the disability rights slogan. This is a new voice in dementia autobiographies — and one that can drive us into a new paradigm of how we see, understand, and care for people with it.
