What is lived experience?
The Oxford Dictionary defines lived experience as the 'personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representation constructed by other people.'
Why using lived experience?
The only way to develop and deliver truly accessible programming is through consultation with individuals with lived experience of chronic illness and disability. There is no better guide to understanding the complexities, and varieties, of lived experiences, and the spectrum of needs, than lived experience.
How can you harness lived experience?
This can be done via advisory groups, paid talks, steering groups, sharing stories in various formats that include more expansive narratives by sharing a more diverse set of stories, and, importantly, diversifying staff members in all levels of an organisation.
How to do it ethically?
Accessing lived experience does not mean adding to the layers of exclusion and exploitation: disabled people often struggle with employment, accommodations and fair pay, in the heritage sector especially. Pay your contributors and make your initiatives long-lasting: too many diversity and inclusion initiatives are not reflected at all levels of orgs.
Key takes about lived experience
Take the initiative to learn more from lived experience, and to embed your learning in all aspects of your organisaiton. When approaching lived experience: do it in a professional context, pay your consultants (always!), and do not ask personal questions related to health specifics, unless prompted.