Author: Karen Copeland

This post might be a little controversial for some readers, but I’m hoping it might spur some conversation about how we practice engagement with parents and caregivers (or patients, or youth, or anyone who is receiving a service).

I would like you to think about a time in your own life when perhaps you have felt ‘erased’. I would like you to recall the circumstances that led to that feeling, and how this impacted you, both in the short and long term. Perhaps it was a one off moment, or perhaps it was something that happened more than once.

I had an experience where words I shared were quite literally ‘erased’, along with my name, because my comments did not fit the preferred narrative of the system I was involved in. This was an interesting experience to be sure. It hurt to see how easily I was deleted without even an opportunity for clarification or discussion. In a way, I can understand why this happened. There is a protective factor at play within systems of care. There is a fear of damaging relationships or creating unnecessary discord. The default priority can be the reputations of people within the system, not necessarily the feelings and expertise of the service user who is sharing.

Unsurprisingly, this is not an entirely uncommon experience for those who find themselves trying to advocate within systems of care – regardless of the system. This can happen when you are advocating for systems change or it can happen when you are advocating for services for your child or youth.

If we truly want to include patients (or parents or youth or consumers) in the change process, then it takes tremendous courage to first ask us about our stories and then listen and reflect on the experiences we share. And yes, this includes hearing about and reflecting on the more difficult and challenging experiences, as well as the positive ones.

Valuing the Patient Voice, July 2015

Engagement is not just about soliciting a voice that will fit relatively nicely with your narrative and cause minimal discomfort; it is about creating an opportunity to challenge our perspectives and biases with the intent of motivating us to try something different.

Hint: Usually that ‘different’ is simply a small change that can have tremendous impact, but perhaps that just seems too easy for some so that opportunity gets dismissed.

are we really empowering people? or only pretending?

We have to be wary of false empowerment” as well…when systems are inviting service users to be a part of something, I think there needs to be critical reflection on the motivation of the invitation. Is the purpose to get these service users involved so they feel useful (and maybe they will stop bringing up their concerns…appeasing, placating)? or that they will then come alongside and support the system ‘message’ (thereby relinquishing much of their own voice)? or are they there in order to demonstrate that they were included in the process (check the ticky box)? THIS is false empowerment. {a more familiar term is “tokenism”}

Real empowerment means systems are open and willing to set aside their predominant message in order to truly listen and understand the challenges service users are experiencing, with the intent of creating improvement. Even better is when service providers can reflect on the words being shared and provide examples of how things can and will change as a result. Real empowerment moves beyond collaboration and embraces partnership. Real empowerment happens when there is more than just interest in hearing about the experiences, those experiences become a catalyst to explore something different and then take the steps to go out and do it! 

I attended a community meeting recently where there were some pretty important decision makers in attendance. Instead of quieting my voice (as I would have in the past), I took some deep calming breaths and shared my thoughts and ideas. I cannot and will not let the experience of being ‘erased’ stop me from speaking out. When we are determining directions for programs and services in our community, we MUST intentionally create the space for our community members to be able to safely share with the decision makers what it is we NEED.

What happens when people raise their voices to share their concerns? Are we willing to set aside our own ‘stuff’ so that we can truly hear what is being said? Or, when we become uncomfortable with those words, do we shut down the conversation? Become defensive?

When faced with a different perspective or viewpoint what will you choose?

Will you erase? or embrace?

Related: My World: Who Speaks for the Patient, Donald Lepp



  1. It is vitally important to continue to be spokespersons for those who find it difficult to speak out for themselves. And you are right, communication can only happen when we are willing to listen. Thank you for your willingness to speak out until you are heard.

    Liked by 1 person

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