Lived experience is a precious resource and belongs everywhere where people living with and without disability are found. My life, so far, has been an unexpected journey with both deafblindness and the many other roles I have occupied - such as student, clinician, partner, parent, student (again), moving into a new field, student (again), moving into research, moving institutions, being a carer of a parent with dual sensory impairment, becoming a student (yet again) and lately, a writer and playwright. I have had to make a career out of adjusting to the relentless onslaught of worsening impairments and the losses that accompany these. Embracing lifelong learning and new ways of doing, being and communicating have given me both enjoyment and usefulness. Lived experience insights are fundamental to ethical research, protections, policies, practices, and leadership. I am presently a ‘scholar-activist’ at the University of Sydney. My role includes co-producing research on issues that matter to people with deafblindness and creating new accessible pathways, as universities are still ableist spaces. There should be nothing about us without us. But we need to tell, sign, write, video, and feel our stories so that our expert-knowledge of our own conditions and lives and needs and joys become known.