(Cissy's note: My Friday morning free-write on stuff I've been thinking about a lot of late)
At least once a week, if not once a day, people ask about how to have more "authentic engagement" from parents, survivors, and community members - especially who are or have been in crisis related to ACEs. And sometimes, people share how hard it is to get or keep folks on committees who do have lived experience and care about trauma-informed change.
I get these questions pretty often. But these questions often come only after an initiative has met for months Or years.
Sometimes, it comes out of great frustration that the great ideas, plans, work, tools and initiatives created or developed or shared about being used, shared, accessed or appreciated by those they were created for. It’s not just un-inclusive and not trauma-informed, it’s not practical as it’s far less likely to speak to or work for people who have experienced trauma.
It's hard to know how much to say or share, when to bite my lip and leave another meeting in tears, or when to say something that might be useful if people genuinely do want traum-I firmed change.
It can seem initiatives are geared for certain people or populations by people and populations that are the same and that people and populations are geared towards aren't present to discuss and co-create them. To me, that's not a recipe for success.
So often, people ask me about increasing "lived experience" presence on teams when those spots have been unfilled, because sometimes that's required to fulfill grants or because folks realize there’s missing intel not being accessed.
But often the questions come without any awareness that it's inherently unfair to ask people who are in crisis or depending on service to also volunteer, unpaid, during the day to give feedback to those they might actually be in a current relationship with - and not in a power-sharing kind of way.
People don't always understand that most people on initiatives are doing work that is at least somewhat, if not entirely funded by their "day jobs," whereas most people with "lived expertise," can't say the same unless, and are often being asked to volunteer as though it’s just nice that we “get” to join. Unless, as some of us say, we've become "professional survivors,” that’s not a great use of time and doesn’t always benefit our healing.
It's not likely that anyone, even in not in crisis can regularly come to meeting during school or work days, that aren't easy to get to, that don't pay, at all, and that, if one does show up one is often only treated as a token.
To me, it's not hard to understand why there's not more "lived experience" perspectives at meetings, conferences, committees, and initiatives,m. In fact, it’s astounding that there is as much as there is any at all.
This needs to change. This can change. And like all social change it usually requires wrestling for peer with people who don’t want to share but insist on seeming nice.
But fighting is hard and wears on us all. Can’t it be viewed as more win win?
Currently, parent involvement, if sought at all, is often an afterthought in most prevention or healing work. Feedback, if sought at all, if often sought after a game plan, program, survey, initiative is well under way. Survivor or parent narratives, when sought, are often limited, and tend to fall into either the "success" or the "sob" story rather more complex and varied reality that is life.
And almost never is lived expertise valued, compensated, prioritized and required throughout an entire strategic plan in a way that assures any power is shared when plans, policies, tools and resources are designed and implemented or even assessed.
I'm not going to lie. I am a little burnt and crispy at the edges. I am frustrated that things haven't changed more by now, and In this movement.
But I know blame and shame aren’t great strategies for change either.
Not knowing how doesn’t mean not caring.
Plus, to change would mean all of us have to change more in how we work together, communicate, share power, and co-create new pathways.
It's hard.
And I know it's hard for everyone. And I know it's hard to include parents and survivors when we are in a culture that, for a long time, has treated people in pain, and especially parents in crisis, as the problem and cause of children's pain, without zooming back and out with a wider lens that includes looking at ourselves, our systems, generational, historical, and systems trauma.
It's hard because, as Louise Godbold says, so many professionals are often in hiding, undercover, and not sharing just how personal some of these topics are. If we can't own and include our own experiences and lived expertise, when we come together, that's a clue to how we regard those who show up to fill that role. How can we embrace and center the voices and experiences when we still shun and silence these parts of ourselves?
There's work for all of us to do. But we don't have to just wing it either.
Things are changing and organizations like Rise are helping make these changes. Thanks to their work, there are a ton of articles and even some resource guides, in print, free and available, created for and by child-welfare affected parents. Here's a link to their site and this recent publication.
I also know there are examples of others who center the voices of parents and survivors. @Louise Godbold, mentioned above, says "direct experience" is an important asset, not something we should hide as is evident in her work at Echo with an understanding that the work is for and about all of us.
@Rebecca Lewis-Pankratz says things like, "Those closest to the pain should be closest to the power," and "We are the best people to parent our kids. We are the best people to be in community." She insists that meetings about parents include parents, meetings about students include students, and that centering voices and experiences starts in making sure those we discuss are represented at every meeting, at every level, as often as is possible if not always. She's amazing, and eager to help others learn more about how to work shoulder to shoulder in community. And she exudes extreme grace and patience (is less crabby than I am) when people with struggle about how exactly to do this more, better, or at all.
Wrestling Ghosts is a movie that many school nurses have or will be viewing in order to learn more about parenting with ACEs. The co-founders of Parenting with PTSD share quotes, stories, essays and ideas in their book and workshops. We have many examples, videos, writing and people to learn from. @Emily Read Daniels leads workshops that help teachers, first, become regulated before expecting them to regulate and co-regulate classes.
Father Paul Abernathy prioritizes community expertise as at least as relevant as clinical expertise in what he calls trauma-informed community development. He says that in addition to great pain there is also great wisdom and that community members are central, are "the table," so to speak and that we shouldn't be talking about how to "give" them a seat at the table that is set by professionals and sectors without them. He turns that around so that it is communities who invite sectors to partner with communities and he says that orientation changes dynamics, and that there's no need to "recruit" authentic voices when that's the model.
@Dana Brown (PACEs Connection Staff) insists on centering and amplifying youth voices, community members, and those with lived expertise, whether working in a school system or as an ally to communities creating and sharing indigenous healing and wisdom. She says it's the only way to make sure ACEs science is also infused with ACEs spirituality.
So, once again, I rest and get inspired by all those who are leading and helping us learn. And I kept trying to learn more as well in places and areas I have privilege as well as where I have ACEs.
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