The Library of Lived Experience
Frequently Asked Questions
See our Get Involved page for information on how to participate in the Library’s efforts!
Anyone is free to access and use the Library! The Library is a hub for sharing the stories of people with lived experience. These stories are useful for those with neurodevelopmental conditions, as well as researchers, policymakers, and healthcare professionals.
The Library is intended to amplify the voices of patients, families, caregivers, and communities–ensuring that lived realities can inform research, education, and practices in healthcare and community. It works as both a resource and a statement: people are more than their health records.
The Library is hosted on Tapestry, a platform dedicated to representing ideas in an interactive, visual format. The Library is represented as a Tapestry, with each theme being a node (a clickable circle). If a user is interested in a specific theme, they can click on the node to see relevant academic articles, community perspectives, and resources.
Currently, the Library is organized into seven themes: Indigenous perspectives, barriers to access, advocacy, gender affirming care, social isolation, transitions, and neurodiversity in school settings.
You can share your story with the library here. You have the option to submit through a survey, hosted on Qualtrics. Alternatively, you can download a PDF form of the submission survey and email it to our Project Coordinator.
We review submissions to ensure that they are respectful and complete, before uploading them to Tapestry. We do not condone any discriminatory, hateful, or culturally unsafe content. If a submission is incomplete, we will follow up with you.
If you wish to have your submission taken down or edited, please do the following:
– Contact the team: Reach out through email, listed on our Contact Us page.
– Provide details: Your full name used on your submission, submission details, and preferred action (i.e. taking down the submission, editing, etc.)
We will be in contact to confirm your identity and process your request ASAP.
