Last week, I had the privilege of attending the National Perinatal Substance Use Disorder Convening in Washington, DC. The event was hosted by the Association for Maternal and Child Health Programs, the Foundation for Opioid Response Efforts, and the Perigee Fund.
Leaders from public health, medicine, policy, community organizations, research, and advocacy came together to improve care and outcomes not only for infants, but for pregnant and parenting people, too.
One of the most meaningful aspects of this convening was the intentional inclusion of four women with lived and living experience of perinatal substance use. Each of us is also a professional in this field. We were invited to present our knowledge and frameworks, not just to share personal stories.
Our expertise was treated as expertise. We were recognized as contributors shaping solutions, not as symbols or checkboxes. That does not happen often enough.
Too many times, people with lived experience are brought into discussions only to have their stories extracted for emotional impact. Their insight, leadership capacity, and professional competence are overlooked. This tokenization and reduction harms both individuals and the systems trying to improve care.
This convening showed another way. One where lived and living experience sits alongside clinical, policy, and research knowledge as equally valuable. One where stories are shared with intention and dignity, through a strength-based lens.
I am grateful to the organizers for creating space where this was possible. When lived experience is engaged with respect and depth, the entire field benefits. Families receive more compassionate and effective support. Providers gain clarity rooted in real-life contexts. Policies move closer to meeting actual needs.
This is what meaningful inclusion looks like. This is how progress is made.