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Perspectives of researchers with lived and living experience on public engagement and discourse
Cioffi, C. C., Flinn, R. E., Pasman, E., Gannon, K., Gold, D., McCabe, S. E., Kepner, W., Tillson, M., Colditz, J. B., Smith, D. C., Bohler, R. M., O'Donnell, J. E., Hildebran, C., Montgomery, B. W., Clingan, S., & Lofaro, R. J. (2024). Beyond the 5-year recovery mark: Perspectives of researchers with lived and living experience on public engagement and discourse. International Journal of Drug Policy, 133, Article 104599. https://doi.org/10.1016/j.drugpo.2024.104599
There has been growing attention toward including people with lived and living experience (PWLLE) with substance use, substance use disorders, and recovery in public-facing activities. The goals of including PWLLE in sharing their perspectives often include demonstrating that recovery is possible, destigmatizing and humanizing people who have substance use experiences, and leveraging their lived experience to illuminate a particular topic or issue. Recently, the National Council for Mental Wellbeing issued a set of guidelines entitled, "Protecting Individuals with Lived Experience in Public Disclosure," which included a "Lived Experience Safeguard Scale." We offer the present commentary to bolster some of the ideas presented by the Council and to articulate suggested changes to this guidance, with the goal of reducing unintentional gatekeeping and stigma. Specifically, we offer that there are numerous problems with the recommendation to only invite people who have "five or more years of sustained recovery" to contribute to public discourse. The idea of perceived stability after five years of abstinence is not new to us or the field. We suggest that this idea excludes people who have experienced the present rapidly changing substance use landscape, people who have briefly returned to use, some young people, and people with living experience who also can valuably contribute to public discourse. We offer alternative guidelines to the National Council for Mental Wellbeing and others seeking to promote practices that are inclusive to the diversity of PWLLE.