Several months ago, the National Council for Mental Wellbeing (NCMW) posted their Protecting Individuals with Lived Experience in Public Disclosure Guide. They describe it as a tool for self-evaluation allowing individuals and organizations to assess the risks to people publicly sharing addiction and recovery stories.
I’ve seen little attention to this topic, but I welcome it. There’s a history of people in early recovery being deployed for business and other purposes in ways that gave little consideration to the instability of their nascent recovery and the potential harm that can result.
Today, we appropriately classify much of this as exploitation. However, I imagine none of the people involved believed any exploitation was occurring or that they were risking anyone’s recovery or encouraging people to adopt boundaries they might later regret. (See A Hidden Story: The Exploitation and Relapse of Recovering Alcoholics and Addicts in Slaying the dragon: the history of addiction treatment and recovery in America by William White)
It’s easy to think of this as a problem of decades past, but the rapid growth of the peer workforce, recovery research, and treatment provide fertile soil for repetition of this past. Further, the opioid crisis has contributed to countless community forums, focus groups, media interviews and profiles, advertising campaigns (with a broad range of nonprofit and for-profit goals), and other calls for people to tell their stories with little discussion of the potential risks to the speaker.
In the context of this history, a framework for assessing potential blindspots is a welcome contribution.
[Note: Bill White and Bill Stauffer have provided guidance for recovering people regarding publicly sharing their stories. However, I don’t recall seeing this kind of guide for professionals and institutions seeking to platform lived experience. See here and here.]
The guide made obvious efforts to be inclusive and avoid an absolute or directive stance, encouraging discernment rather than a set of rules or do/don’ts(emphasis mine):
The Protecting Individuals With Lived Experience in Public Disclosure Guide and the Lived Experience Safeguard Scale (LESS) are designed to help individuals and organizations identify and manage the potential harms involved in publicly sharing addiction recovery stories. These resources enable the evaluation and adoption of strategies for better safeguarding storytellers’ wellbeing; the proposed strategies can be mixed and matched depending on the nature of an individual project. Any effort made toward safeguarding wellbeing is valuable.
Plante, A., & Lovell, C. (2024). Protecting individuals with lived experience in public disclosure guide. National Council for Mental Wellbeing. https://www.thenationalcouncil.org/protecting-individuals-with-lived-experience-in-public-disclosure-guide/
One consideration in the guide is the stability of the speaker. As such they offer 3 recommendations:
- Select a speaker with 5+ years in recovery/healing pathway
- Select a speaker with a career in public advocacy
- Select a speaker with or provide formal media training
The 5-year recommendation is based on research indicating that recovery can be considered durable after 5 years, with the risk of relapse dropping below the prevalence of addiction in the general population.
The guide includes a 16-item scale to help people assess their own efforts at identifying and managing potential harms. Their rating scale makes it clear that the NCMW doesn’t expect users to follow all 16 recommendations
- 11-16 is high prioritization of the wellbeing of the individual sharing their story.
- 5-10 is medium prioritization of the wellbeing of the individual sharing their story.
- 0-4 is low prioritization of the wellbeing of the individual sharing their story.
A group of 16 recovery researchers objected to the 5-year recommendation (and some other content).
the guide also reflects the gatekeeping of who gets to tell their story and how they get to tell their story. Additionally, we offer that it is not clear whether or how PWLLE (people with lived and living experience) were involved in the creation of the National Council on Mental Wellbeing’s recommendations. The purpose of this commentary is to reflect on the potential harms of gatekeeping, especially based on number of years engaged in recovery, when collaborating with PWLLE.
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. The International journal on drug policy, 133, 104599. Advance online publication. https://doi.org/10.1016/j.drugpo.2024.104599
The article expresses concern about the exclusion of people with less than 5 years in recovery, people who don’t identify as in recovery, and who use alcohol and other drugs. It notes that such a standard could limit diversity in public representations of recovery.
The authors also note the potential for paternalism and the harm it can cause by denying agency and the dignity of risk.
What’s interesting is that the response devotes a lot of attention to abstinence with 19 instances of “abstinence” and 1 instance of “abstain” while the guide makes zero references to abstinence and clearly made an effort to be pathway agnostic, including the reference to recovery OR “healing pathway.”
Another objection is that a link used to support the 5-year recommendation describes addiction as a chronic brain disease requiring control and management with abstinence. While it’s fair to note that the 5-year recommendation is based on research on abstinent recovery, I don’t recall seeing articles criticizing other works based on assertions in one of the references. It would be helpful if there was a reference with indicators of recovery stability for non-abstinent addiction recovery, but I don’t know what that would be.
I used “addiction recovery” in the previous sentence because that’s the stated intended use for the guide — “publicly sharing addiction recovery stories.”
To me, it’s clear that NCMW isn’t saying “no one under 5 years”, they are just encouraging consideration of the risks and possible methods for mitigating those risks.
Given the obvious effort to be inclusive and non-controversial, it’s surprising that this would evoke such a strong response from 16 coauthors.
I believe one major contributor to much of the discord in the field is the fuzziness of the conceptual boundaries of addiction, SUD, AOD use, and recovery. This fuzziness makes it impossible to discuss these matters without people hearing and responding to meanings that aren’t necessarily intended. Given the fuzziness of our language and concepts, we could avoid some conflict and confusion with clarity about what we’re trying to represent (addiction? SUD? AOD use? remission [from addiction, SUD, or use]? recovery [from addiction, SUD, or use]?) with a focus on what (policy, treatment, harm reduction, primary prevention, understanding lived experience, imparting hope, challenging stigma, etc.)?
In this particular case, the guide states its purpose is to provide guidance for publicly sharing addiction recovery stories, but it also consistently refers to substance use disorders, and it refers to living experience which usually implies People Who Use Drugs (PWUD). The only thing these categories have in common is that they use or did use AOD. Those categories don’t really tell us anything about their relationship with AOD. As such, despite the efforts to avoid controversy, one set of guidelines for these disparate groups is doomed to incite controversy.
In response to the reference to addiction as a disease, the authors point us to an article on The Harms of Constructing Addiction as a Chronic, Relapsing Brain Disease for information on the limitations of the disease model. I responded to this article a couple of years ago. I’ll repost that response tomorrow.
Recovery Review 
One thought on “Guidelines for publicly sharing addiction recovery stories: protecting, paternalism, or gatekeeping?”
Comments are closed.