Phoebe
Established Member
In November last year Action for ME invited people with ME to complete a questionnaire describing their experience of ME. The responses were collated by Scottish artist and poet Alec Finlay who selected the most expressive phrases, without altering them, to create a collective patient-led description of what it is like to live with ME. It will be published on 9th June as a paperback book, downloadable PDF and audio recording.
Ahead of publication, I interviewed Alec about the project for Disability Arts Online. We discussed the process of creating the poem, Alec’s motivation, the issue of how people with ME can represent their reality, and the role that this book can play in ME advocacy going forward.
I do hope that the ME community recognise what we have here. Descriptions is a moving work of art, but it’s also a powerful and heartbreaking account of ME, that, as Alec told me, makes the reality of ME impossible to ignore.
https://disabilityarts.online/magazine/opinion/action-for-me-publish-alec-finlay-descriptions/
Ahead of publication, I interviewed Alec about the project for Disability Arts Online. We discussed the process of creating the poem, Alec’s motivation, the issue of how people with ME can represent their reality, and the role that this book can play in ME advocacy going forward.
I do hope that the ME community recognise what we have here. Descriptions is a moving work of art, but it’s also a powerful and heartbreaking account of ME, that, as Alec told me, makes the reality of ME impossible to ignore.
https://disabilityarts.online/magazine/opinion/action-for-me-publish-alec-finlay-descriptions/