“What is past is prologue” as William Shakespeare once said. While this does not mean that history is fated to repeat itself, it does point to the tendency for patterns to echo. Understanding those patterns can help us understand the present and potential risks we face currently. Readers interested in learning about our history, the authoritiave work on the subject is Bill White’s Slaying the Dragon. One of these “echoes” is a tendency to marginalize communities in recovery participating in the development and implementation of the polices and processes related to treatment and recovery from substance use disorders.
There is evidence of erosion in the progress we have made to ensure that people in recovery whose role it is to focus on recovery are at the table when decisions are made about us. Our stories are still valued when they serve other’s needs, but our involvement in matters related to our care perhaps unfortunately less so. This kind of marginalization has occurred historically and so is a concerning trend at this juncture.
An example of marginalization that I observed occurred a few weeks ago for me when I was working with a group and the history of the CRS credential in Pennsylvania came up. The SUD peer credential for the state of Pennsylvania was developed through grassroots efforts by recovery community organizations for use within our communities for persons to engage in and sustain recovery. Our very development of the credential was missing from the body of work being reviewed. Additionally, all reference to recovery community organizations were also absent.
A few weeks later, I was working with another group on a document and a discussion of the definition of a recovery community organization occurred. Some non-recovering participants wanted to remove the word “authentic” from the definition of a recovery community organization. It is a central element of the definition defined by Valentine, White, Taylor in 2007 where the authenticity of voice is highlighted as a critical component.
What does it mean twenty years into the new recovery advocacy movement when we must fight for the very right to define ourselves?
The vast majority of decisions made about persons with addictions are still made with no one in recovery in the room who are focused on the needs of the recovery community. When we are included, it is often in a token role or with persons cherry picked to reflect the desired outcome or share our story to highlight someone else’s agenda. It is by definition paternalistic and exclusionary. History shows us that this tends to move us away from policy (and resources) that serves our community and ultimately away from the very needs of the community. This is a fairly persistent historical pattern.
The opioid crisis and the influence of implicit bias have exacerbated these dynamics. The sad truth of the matter is that while we have made progress in making recovery more visible in society, we have not moved the needle very much on the underling dynamics of marginalization. There remain deep biases against person in recovery which lend themselves to paternalistic processes that do not serve us well. This play out in a variety of ways, including burgeoning administrative demands on our SUD care system and greater disparity in accessing care for an SUD in comparison to medical care and lower compensation for our SUD workforce than social workers or mental health counselors. It is still true here in Pennsylvania and beyond that having a substance use condition is viewed in a more negative light than a mental health condition. Until this changes, there will be a tendency to discount and marginalize our voices.
So what does inclusion look like? According to this 2014 study focused on education there are five essential elements have emerged in looking at inclusion:
- Relationships with the individuals and groups that involve deep connection and awareness of their diverse needs.
- Shared experiences with these groups that bring them into the process in meaningful ways that foster deep insight and empathy for the affected community.
- Advocacy the absence of which not only results in non-participation but the lack of voice. Without an advocate to push for inclusion, and lacking the skills to effectively speak for oneself, a situation of exclusion more readily emerges.
- A sense of identity in which there is sensitivity towards and deliberate focus on fostering a sense of identity and understanding the shared focus of the group in a truly representative manner.
- Transparency, runs through the entire system and involves the seeing of what is present, but also seeing what is not. With an increased awareness of inclusion (and its flip side, exclusion), how values are put into practice in an open, intentional and respectful manner.
Policy that excludes the recovery community moves away from the needs of that very same community; it is the wrong path. Inclusion in deep, meaningful ways strengthen policy and supports recovery across all of our communities. This is what history teaches us. We should be wary of increasing marginalization and paternalism and seek ways to provide meaningful inclusion. Recovery ultimately occurs in the context of community and we cannot effectively support recovery without including the recovery community.
Nothing about us, without us is our historical rallying cry for good reason.
Our community deserves nothing less than full inclusion in matters related to our own care.