The views expressed on EENote: An EENet Blog do not necessarily reflect those of Evidence Exchange Network.
By Betty-Lou Kristy
The cultural shift from storytelling to evidence
“There are many truths of which the full meaning cannot be realized until personal experience has brought it home.”
-John Stuart Mill
(Author’s note: *any reference to family is meant in the broadest application to include traditional family or not. The client shall define who their ‘family’ is. Family can be identified as significant other(s), friends, ‘care-givers,’ etc.)
- Traumatized child growing up with violent parents who had mental health and alcohol issues (including a mother who drank while pregnant with me) and my resulting journey through mental health, alcoholism, and drug addiction. I currently have 17 years in recovery.
- Family member – specifically, a mother who fought hard to find effective help for her son who struggled with learning disabilities, mental health, alcoholism, and an addiction to the opioid pain medication Oxycontin.
- Provincial and community advocate involved with governance, policy, systems planning, training, peer support, writing and public speaking, with an emphasis on my lived experience expertise.
Let’s start with “family member.” On December 23, 2001, my late son, Pete, lost his battle and died at age 25 of an accidental mixed drug overdose: Oxycontin pain medication mixed with psychiatric medication.
My expertise previous to Pete’s death was always framed in the obvious: I was a ‘damaged’ mother trying to parent a child she ferociously loves—but without the skill sets or wellness needed to do that effectively.
But since Pete’s death, I have acquired an additional layer of ‘expertise’—that of bereaved mother and, more generally, family member. In fact, in my family we have two young people dead already and another who has destroyed his life as a result of Opioid addiction. All of them under 30 years of age, all of them dealing with concurrent disorders, all with genuine chronic pain issues, which resulted in legal prescriptions from doctors. They got hooked from there.
Sadly, I have additional direct experience peer supporting other bereaved parents who have lost their children to opioids. Every time I get that call and go down to Bereaved Families of Ontario (Halton/Peel affiliate), or have someone connect with me directly, I feel sick. Their vivid experiences augment my own lived experience and add yet another layer to the perspectives that I bring to the table. Most of these voices might not otherwise be heard.
But these aren’t just voices telling their stories; they are voices providing evidence.
Sharing lived experience of people and families can humanize the work of researchers and make it real and relevant. We provide evidence of both personal and collateral ‘damage’. We identify, qualify, and quantify the intrinsic human dynamics that pull in so many variables essential to both enhance or dispute otherwise ‘dry’ findings. We also provide real-time data and real-time surveillance – which only sounds scary! What I mean is, we can recognize street-level trends in local communities early. We breathe life into knowledge exchange.
Also, on a practical level, the added component of, well, us can even help guarantee that projects get accepted and funded. After all, the project will be woven with authentic human experience.
Put another way, research & data provide the ‘blood and sweat.’ Lived experience supplies the tears.
I feel strongly that researchers and people with lived experience and their family members need to work together. We need to establish mutual trust and mutual respect, and empower one another. Stakeholders such as government, funders, and agencies have the right to want a certain level of skill sets and the right fit when it comes to engaging lived experience/family at a systems level. I certainly feel that the process of ‘matching’ stakeholders to ensure everybody’s needs are met is not only beneficial but imperative.
In the next installment of Bringing It Home, I’ll talk more about my journey and my late son’s journey and how stigma impacted both of us individually and in the family cyclical processes. I will also explore the impact of stigma at community level in the broader sense and how all of this is essential to inform across the evidence chain.
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 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.
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.