The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.
By Betty-Lou Kristy
Peering at a Problem: Peer Support, Lived Experience and Family Advocacy, and Other Hats
“Never forget that you are one of a kind. Never forget that if there weren’t any need for you in all your uniqueness to be on this earth, you wouldn’t be here in the first place. And never forget, no matter how overwhelming life’s challenges and problems seem to be, that one person can make a difference in the world. In fact, it is always because of one person that all the changes that matter in the world come about. So be that one person.”
―Richard Buckminster Fuller
My original intention for this blog was to talk in more detail about some of the specific opportunities I have had to participate in mental health and addictions initiatives at a systems-level. The different processes and outcomes, negotiating triggers, creating safe space, and the necessity of a delicate roar—given the complexity of these elements, I joked at one point that the blog may have to be called, The Good, the Bad & the Ugly.
Well, very quickly (and frustratingly) I realized that I could not possibly explain all of the above without sharing my evolving thinking about peer roles and lived experience/’ family’ roles. So on to my original prologue…
I think I need to explore what I have covered in this blog series so far—to establish a deeper understanding of what it is ‘we’ as people with lived experience and family members offer. With that framework established, I can give context to those different roles and can provide some examples.
In my first blog, I spoke generally about the lived experience of people and families and the cultural shift from storytelling to evidence–about the fact that we aren’t just voices telling stories, but are actually voices providing evidence, which humanizes research & data. I spoke to the need for mutual trust, respect, matching skill sets, and empowering each other to inform across the evidence chain.
In part two, I explored my personal journey and my late son’s journey—how systemic failures, toxic inaction, cyclical shadows and stigma have a negative impact. Although blog two was much more personal, I also provided a lot of evidence.
Evidence of tangible hard data but also the human perspective. The human perspective weaves together facts and mitigating emotions, leading to more fulsome evidence: human tragedy and resilience, the love that wasn’t enough and what loss of hope-dignity can do to a person. I use my eyes to see, my voice to speak, my heart to bring a ‘pulse’, and of course, my recovery — in spite of it all — to model the power of the human spirit.
We have the ability to offer perspective on the complex, multilayered dynamics of dealing with mental health and/or addiction issues because we have lived a life that can’t always be anticipated and measured in an ‘ivory tower’.
These human dynamics may not be predictable enough for researchers to identify and then try to collate into a researchable project. Life is messy and can mess up data.
Still, our evidence helps to provide a road-map to change.
We bring a lot to the table, but we can only bring what we are empowered to bring and that in large part depends on how well all of us work together to be part of the solution. When allowed full and equitable political and social power with meaningful involvement in governance, policy development, planning, delivery, and evaluation, people with lived experience and family members can provide unique and applicable schematics to work with and base decisions on.
When you collaborate with us to nurture a stronger, politically influential voice, we can play a huge role in affecting healthier outcomes. Through us and our willingness to dig deep and share our personal experiences (read: evidence!) and expertise we showcase truth, illustrate reality, provide direction, shatter illusions, bias, stigma, and (last but not least) make it real.
That can only be established if we are working together in full partnership to meet each other’s needs. I have little impact if forced to work in isolation. We must be fully connected, valued, embraced and recognized with clear and equitable roles. We need to be funded and fostered to develop our capacities and skills. That is why partnership and inclusion based on mutual respect and mutual goals is crucial.
Peering at a Problem: Evolution of Lived Experience/‘Family’ roles and Peer Support Roles
What is Peer Support?
“Peer Support is a naturally occurring, mutually beneficial support process, where people who share a common experience meet as equals, sharing skills, strengths and hope; learning from each other how to cope, thrive and flourish”.
―Ontario Peer Development Initiative (OPDI)
In addition to the previously mentioned systems-level governance and public speaking roles, I have also done a LOT of peer support over the years. Peer support in the mental health and addictions field. Peer support in addictions, including abstinence-based practise and harm-reduction-based peer support in addictions. I have also provided peer support for bereavement and in primary care contexts such as cancer.
I have also been fully trained in many different peer support systems outside of the Consumer Survivor Initiative (CSI), “which is a community organization run by and for people who have lived experience with the mental health system. They operate on the principles of recovery by providing self-help and peer support, and also operate businesses using the community economic development model”.
As my experience grows, so do my roles, which now include co-facilitating training and development of lived experience speakers more specific to addictions but applicable and inclusive of mental health. I also take part in on-line training for Families Affected by Concurrent Disorders and other matched educational processes such as webinars, workshops, mixed media and blogging.
The ever-expanding roles and application of peer support and ‘systems-level’ lived experience and family advocacy has led to both excitement and hope but also to complete frustration and loss of hope (and significant financial hardships; my full-time ‘job’ is as a volunteer, and I live off minimal honorariums when and if they are provided).
To be clear, I am not seeking full-time employment, even if people like myself are forced to live very frugally. I have been offered employment, but with financial security, I would lose my autonomy. I fully recognize that my strength as a lived experience and family advocate is in the diversity of my roles, from the community to systems-level. How are we going to cultivate such roles and attract the skill sets and level of engagement needed if we can’t have our autonomy to partner with as many matched initiatives as possible to explore and expand capacity and effectiveness?
That decision does not make me a hero or a martyr. It just makes me a really good ‘mother.’ It is my passion to be part of the solution, so no one else has to suffer and live with losing a child or live with a diminished quality of life due to systemic gaps, barriers, and societal stigma.
Consider the following list:
a) There are so many different types of peer support. (Good)
b) There are many different trainings for peer support. (Good)
c) Peer support is finally being recognized for the positive impact it has, plus its ability to create capacity in so many ways and reduce stigma and create safe places and spaces. (Good)
d) Peer support is a very different ‘being’ depending on its context: mental health, addiction, abstinence-based recovery, addiction/harm reduction-based supports, drug users advocacy, outreach, concurrent supports, CSI Initiatives, OPDI, etc. (Good because of its wide applicability-but not so good if you’re looking for a one-size-fits-all solution)
e) Peer support morphs again when applying it to other areas that can crossover into MH&A…areas like bereavement, cancer care, brain injury, diabetes, primary health care issues, etc. (Once again…good in its variety of applications-not so great when all the vast peer initiatives and trainings are not included in the equation)
f) It morphs yet again when applied to child, youth, seniors etc…(This makes it difficult to ‘brand’ peer support and makes it dangerous when we are not being inclusive of all)
g) Peer support is not restricted to ‘talk’ support. Peer support can be wellness-based, creative expression, hobby and diversion, and inclusion as opposed to isolation activities, etc. (Very exciting but needs to be recognized)
h) Systems-level advocacy roles are distinctly different than peer support. (Embracing these growing roles at a systems level is quite exciting but clumping us all into one basket is quite confusing, frustrating and limiting)
i) There is a fast-evolving and growing role for lived experience and family speakers/communicators for various audiences and media. (This is quite exciting but also fraught with potential ‘safety issues’ and ‘manipulation,’ for all involved. This also requires specific skill sets, level of wellness, training, etc.)
Anyway, as you can see, the potential is huge in identifying, validating and clarify all of the above evolving roles. The parameters have changed. You can’t just clump us all into one basket. We are all unique.
A few questions for you. Please feel free to reply below. How do we ensure everyone is trained properly in each of the applicable roles? How do we ensure everyone is treated with respect? How do we ensure equability for all? How do we create a ‘safety net’? How do we move forward if we are not inclusive of all the variations? How do we ensure that we define the significant difference between volunteerism, ‘forced’ volunteerism, and being ‘paid’ for lived experience expertise, evidence, and intellectual property?
In my next blog I will highlight some examples of meaningful engagement.
BETTY-LOU KRISTY is a bereaved mother, in recovery from co-occurring alcohol/multi-drug addictions, trauma and mental health issues who also lost her concurrent disordered son to an accidental Oxycontin overdose.
As a result of Pete’s death, Betty-Lou dedicates her time as a provincial systems level, lived experience and ‘family’ – advisor/ consultant and advocate who additionally provides peer support and outreach at a community level. Betty-Lou is also an experienced speaker, trainer and facilitator who has written three lived experience e-books and is the recipient of the CAMH Transforming Lives Award. You can watch the video about Betty Lou’s Transforming Lives award below. And while you’re at it, check out Betty-Lou’s new anti-stigma video called Stigmatized and Irrevocably Harmed here.
Betty-Lou holds several board directorships, has worked on many specialized projects such as the Minister of Health’s Expert Working Group Narcotic Addiction and The Minister of Health’s Consumer Working Group for the Comprehensive Mental Health & Addictions Strategy. She has both training and past experience within Children’s Aid Society, Big Brothers & Sisters, Restorative Justice, and conflict mediation, and she graduated from the Halton Citizens Police Academy.