Bringing It Home: Six

Meaningful Engagement (and Winnie the Pooh) - by Betty-Lou Kristy

The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.

I don’t see much sense in that,” said Rabbit.

“No,” said Pooh humbly, “there isn’t. But there was going to be when I began it. It’s just that something happened to it along the way.” ― A.A. Milne, Winnie the Pooh

Betty-Lou with photo of her son
Betty-Lou with photo of her son

Throughout this blog series I have promised to talk about how to meaningfully engage people with lived experience or family members within addiction and/or mental health systems. It always seemed like there was yet another dynamic that needed to be explained so the reader would fully appreciate why it’s so important to have meaningful engagement and also why it’s so insulting when ‘tokenism’ happens.

It’s not that I lacked examples to share (both good and bad) from my area of expertise, which involves (deep breath): providing evidence, leadership and advice to systems policy, planning & governance for mental health, addiction, trauma, grief/loss, and bereavement, as well as providing peer support, education and outreach to community and agencies–a mouthful, I know.

No, it had more to do with a pervasive, gnawing question: do we even know what meaningful engagement is? And more importantly, what and who defines that? Seems to me that a one-size fits all application won’t and can’t work because meaningful engagement depends on individual experience, need, perception, reciprocity, balance, triggers, emotional connection, empowerment and fulfillment….to make it, well, meaningful.

“I’m not lost for I know where I am. But however, where I am may be lost.” ― A.A. Milne, Winnie the Pooh

To do this blog justice, I had to dive a lot deeper than I originally thought. I had to get to the heart of the matter. I had to answer some questions, “Why would anyone want to be a community volunteer lived experience/ ‘family’ advocate at the systems level, particularly given the amount of personal investment and sacrifice as well as financial hardship?

And why would someone want to commit almost a decade to of her life to engagement? I eventually realized that what is meaningful to me may not be meaningful to another because it’s so personal. Lived experience is personal. Being a family member is personal.

Next, I had to see if there could be a framework of reference for meaningful engagement that could be used to guide the process for all stakeholders and partnerships.

Then I ended up with an identity crisis rolled into something like a mid-life crisis and a burning question: “What do I want to be when I grow up?” That in itself was very ‘weird’ for me given that I’m 58 years-old, have a very full life, and have evolved beyond wounds to become a ‘wounded warrior,’ (with a delicate roar and 17 years of substance-free recovery, while standing in her authentic power and walking her path of many paths and still trying to process her son’s overdose death 13 years later–yeah, another mouthful, I know)…

“Pay attention to where you are going because without meaning you might get nowhere.” ― A.A. Milne, Winnie the Pooh

Ultimately, I realized that life changes. Period. And with change comes growth. If we don’t change we won’t grow. We’ll get stuck, overwhelmed and ‘buried alive’. We’ll be unwell. We have to learn to be very good at transitional change.

Another thing we must come to grips with is that some of the changes have more to do with others around us evolving (or not). There is often major stuff going on with our loved ones, extended family, peers, friends, neighbours, and co-workers. Sometimes these things ‘bleed’ into our space but we need to realize a couple of things…

First, the change may just be about them and not about us (or anything we’ve done wrong). Second, we may need to be open to the change happening around us so that we can stand firm in support, learn new skills, and test ourselves.

We need to give others ‘permission’ to be perfectly imperfect, without shame, blame and self-stigma.

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” ― A.A. Milne, Winnie-the-Pooh

What does all that have to do with meaningfully engaging people with lived experience and family members?

Simple.

All stakeholders are responsible for creating meaningful engagement. It won’t happen in isolation and it won’t happen through a formula. Its strength and power rests completely within human dynamics and honest interaction. Meaningful engagement is a process. It actually mimics the change I’m talking about. It evolves. There is no formula for life. Life experience becomes meaningful through individual, subjective perception, so obviously engaging lived experience/’family’ in meaningful engagement works the same way. It’s not transferable. It’s all about relationship-building and reciprocity. It’s all about mutually rewarding impact, transition, and outcomes. It’s all about nurturing growth.

Ultimately, engagement, like life, is complicated—period.

Postscript

The only appropriate closing I can choose for this whole “Bringing it Home’ blog series would be a message to my late son.

“As soon as I saw you, I knew an adventure was going to happen.” ―A.A. Milne, Winnie the Pooh

“Pete, you will always be the ‘fire in my belly’ that constantly propels me to get up, over and over again.” ―Mom

Peter (Kristy) Beattie Sept 1976-Dec 23 2001, Oxycontin & psychiatric medication overdose

I think it is important to make available my lived experience/’family’ profile so you can know the types of advocacy initiatives and engagement that are possible. They are very meaningful to me.

The profile also includes links to the three advocacy videos that my late son and me are featured in and links to my free lived experience e-Book series called ‘Little Books of Big Pain’: Uniquely artistic depictions of juxtaposed lived experience journeys into darkness & light. You can also read them electronically here.

Living Bereaved: A Mother’s Journey: Through picture and soulful prose, Betty-Lou shares her profound devastation after the death of her son Pete and their love-soul connection regardless of physical death.

Mutations of the Mind: A Child Lost To Prescription Pain Opioid Medication & Mental Health: Uniquely artistic delineation and searing cyclical dynamics of a child (Pete) lost to Oxycontin overdose and a mother (Betty-Lou) living in recovery herself trying to resolve the inability to source help and hope.

Glass in My Sandbox: Inside the Mind of Childhood Trauma: Betty-Lou, through picture narrative, journeys into her traumatic childhood viewed through the eyes & emotions of that wounded child, clearly portraying how trauma affects children.

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. She is now also a Ministry of Health ACE award recipient in the category Partner Relations.

This blog is part of a series. Check out Betty-Lou’s firstsecondthird , fourth, and fifth blogs.