Photo by River Stone Recovery Centre. A lego prototype of the iOAT room that was used to test the concept and layout with potential therapy participants.
This blog post has been co-authored by Katie Upham (Substance User Network of the Atlantic Region), Sara Davidson (River Stone Recovery Centre), Tiziana Zevallos (All In), and Jules Maitland (All In). Wherever possible, we have attempted to be clear from which of our respective perspectives we are writing.
Unlike the other authors, Katie was not involved in the design of River Stone Recovery Centre, nor the creation of the Field Guide. We are grateful for her willingness to review the field guide and share her expertise in the co-authorship of this blog post.
Why is this Field Guide important?
From a clinical standpoint, the River Stone Recovery Centre Social Research & Development Field Guide demonstrates the subtleties and complexities of implementing a best practice approach in a field of uncertainty. Having an understanding of what our learnings, pitfalls, pivots and accomplishments have been can serve to help others aiming to provide best practice, albeit disruptive services. In a medical and community space rife with bias and stigma it is also important for others to know that their good ideas, enfolded with social justice, designed in conjunction with the recipients of care, and based on the foundations of best practice, are worthy of pursuing.
From a design perspective, the reflections represent some of the moments in the project where we felt friction; where we found ourselves thinking everything from “huh, well that didn’t go as planned” to “oh… so this is what they mean when they talk about dominant systems protecting themselves from perceived threats”. For Social R&D practitioners new to this domain who don’t have lived experience of substance use or precarious housing, we hope that the reflections offered by the design team can help prepare them for this work and at least feel less alone as they hit (sometimes painful) bumps in the road. Our practice has continued to evolve since the Field Guide was written. Reminding ourselves that Social R&D practitioners are not the experts in this space reinforces the call to create opportunities to go beyond engaging people with lived and living experience (PWLLE) as participants, to engaging them as experts and partners in this work.
What reflections from the clinical and design teams stick out the most for you?
From the standpoint of a harm reduction educator and PWLLE, “Build the Dream Team” resonates strongly. You can sink or swim based on who you have on your team and how they interact with people who use drugs. This applies to both clinical and social R&D teams, and I’d like to add and emphasize the importance of hiring PWLLE as paid members of both types of teams, but especially in clinical settings where power dynamics are arguably at their most critical.
As such, “Recognizing Power Dynamics” is another reflection that stood out to me and one that I think is important to continually revisit and reflect on. I recognise the progressiveness of the work being done by the clinical team and I appreciate that participants were engaged in the design of the Code of Respect. However, I feel that there was room for more onus on the responsibility of the clinical team because of those power dynamics. It raises the question for me of how can the people in power even accurately recognize this dynamic and work to change it? This is why you need PWLLE to constantly weigh in and be able to tell them. This further underlines the importance of capacity building within the community of PWLLE, so that they can build confidence and capabilities in advocating for themselves and their peers.
In the design section, I thought that the reflection of “It’s not always OK to fail” was incredibly humble and really well written, sincere and genuine. I appreciated it. In this reflection the design team demonstrated an awareness of what can be a repeated cycle of hope and disappointment for oppressed communities who are often engaged and invited to dream big, only for the dreams not to materialise. I think that’s an important lesson for design teams to learn. We all make mistakes, that’s how we learn, but incoming teams should tread carefully with their ambitious (and well meaning) intentions.
The River Stone Recovery Centre’s approach is person-centred, trauma-informed, harm-reductionist, and evidence-based. What do you wish more people knew about the work that goes on at the River Stone Recovery Centre?
From a clinical standpoint, I wish they knew that the people who have experienced some of the most devastating traumas, challenges, and losses, and who face some of the most painful stigma, are among the most creative, funny, innovative and strongest people they will ever meet. I have often heard comments that it must be so hard to work with this population, and I counter that the people are great, it is the systems they face that are so hard. We all work together, and not always perfectly, but aim to have the participants be agents in their own lives, in their health care, and in defining what recovery means to them. We are there to serve.
From the perspective of a harm reduction educator and PWLLE, providing people who use drugs with oral and intravenous therapies is not enabling, it is empowering. It is providing a safe alternative to the toxic drug supply. It sends the message to people who use substances that they matter; their safety and wellbeing is important to society. It provides stability which gives program participants the opportunity to create and tackle their own goals in terms of their substance use health and their life as a whole.
In the reflections from the design team section of the guide, there’s the recommendation to “balance the desire to co-create with the space to breathe”. How did the design team manage to balance the involvement of individuals to participate while being mindful not to place the burden of design on them?
When the design team started to feel like we were becoming a burden, we scaled back the scope and speed of our R&D activities. We maintained a focus on the primary and immediate concern, being the creation of a safe space in the Phoenix Learning Centre, but did not explore more future focussed research questions. We prioritized the implementation of timely responses to needs that were being surfaced by participants. We made sure to share the insights gained and actions taken in the form of handouts and informal conversations, with an invite for all centre guests to provide feedback if they thought we had misinterpreted the implications of what we had learned. In that way, a broader number of the population could contribute than those who were willing and able to engage directly in the facilitated activities.
From the perspective of a harm reduction educator and PWLLE, while it is important not to put too much pressure on PWLLE, having a say in the design of spaces and programming is extremely important. It is important for designers to check their assumptions whenever they are feeling a burden. If people don’t have the desire to participate, have you considered that perhaps you haven’t made it a desirable opportunity? Perhaps people aren’t preoccupied with their life situation necessarily, but you are not speaking to them in ways that make them feel included and engaged. Maybe the language you are using is too academic or full of jargon. Furthermore, please be aware of who is in the room that could influence the feedback from PWLLE. What you may not realize, is that it is almost draining to have other people in the room who don’t have lived experience when you’re asking about experience. What can happen is that good intentioned folks, without meaning to, can make little remarks that come off as condescending to PWLLE.
Another thing to consider is to put effort into identifying PWLLE that do have the capacity to engage. Participatory action research has been proven to be very impactful in this population. We’re a highly studied population. It’s really nice to be involved throughout the process. I recognize that it might be hard to identify the people that can really commit in that way but it is just so crucial. Lastly, it is important that people be paid for their time and input on program design, and that credit is given where it is due for the contributions of PWLLE.
What are some ways that the wider community can offer support for participants who use services at the River Stone Recovery Centre?
Take the time to educate yourself about the role that trauma plays in substance use. Everyone should have trauma-informed training – look into how to get this information in your community. When you see someone struggling, remind yourself that anyone can fall on hard times; show compassion instead of disgust or rage. Further mistreatment of PWLLE just exacerbates the problem and contributes to the cycle of trauma and substance use.
Be an ally.
Examine and continually challenge your own privileges, biases, and stigma towards the oppressed groups of people in our society and the root causes of that oppression. Learn how to be a good ally to equity-deserving populations. At a minimum, try to reduce your use of stigmatizing language. If you really care, get involved with the community.
Be an advocate.
Make an effort to reduce stigmatizing language when discussing substance use and kindly correct others when harmful language is used to talk about PWLLE. Take the time to educate yourself about the principles of harm reduction. Support harm reduction initiatives in whatever capacity you can, and challenge the notion that individuals need to abstain from the use of particular substances in order to be eligible for essential services such as mental health care and housing.