ACES Connection – Or Disease Mongering, Round 2?

Corinna West
21
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This blog post is in response to the most recent blog post in MIA saying, “We need to spread the gospel on ACE scores.” Well, a bunch of ACES connection people are doing that already and it may not be so awesome after all.  Or at least we need to shape our own conversation on this. Here’s my story and here’s the science I see as relevant. Please feel free to join the national ACES forum and tell them what YOU think.

So in Kansas City I was part of a failed community engagement project. And because I started pointing out the failures of that project, when the next project came around I was excluded. This next project was working with the KC Chamber of Commerce to create a healthy communities plan. The mental health committee (which had ignored 7 direct and personal emails from me asking to join) decided to do a trauma-informed city.  Well, that wouldn’t have been my vote, but it was less damaging than a bunch of other ideas… Or so I thought.

Mark Wiebe, one of Kansas City's ACEs Connection project leaders
Mark Wiebe, one of Kansas City’s ACEs Connection project leaders. Here with Rick Cagan of NAMI Kansas.

A couple of years later Kansas City’s trauma-informed city project got one of 14 $300,000 grants to build the trauma-informed city thing. I thought that was pretty cool, so I went to the project launch. They told some stories from psych survivors, and named the project Resilience KC, so I got really excited. I went to them and basically said, “Look, I already have a methodology for building community resilience and we have 50 outreach events coming up this summer, so we can help you spread the word. But I don’t believe advocates should be asked to work for free, so what do you have left in that $300,000 budget? And if you have already allocated that budget, here’s a lot of nonmonetary resource needs our business has, so let’s work something out.”

Of course this was a much longer conversation and involved me losing a bunch of sleep – and trauma re-triggers – myself. But in response they basically said, “We don’t care about your methodology, we don’t care about including the recovery movement, we don’t care that our community engagement process is traumatizing and damaging to advocates.

And I basically said, “Fine, F off then, I’m gonna go play with my own projects,” because I don’t intentionally set advocates up to be disrespected, or work for free. And when I accidentally do it I at least try to apologize.  I have figured out that mental health providers are unreachable a long time ago. But I gave these guys one last try since their project was at least using a lot of the right words.

So then, for some stupid reason I started interacting with the national level group work on spreading the gospel of ACES. I asked them about their science, their community engagement process, their work to spread resilience. In other words, are they talking about the solution or just promoting the problem? So here’s a rundown of how that discussion went:

The Four Fallacies of the ACES Connection Crowd:

Sam Demel from Wichita State university has done some good research on community engagement
Sam Demel from Wichita State university has done some good research on community engagement

1. Effective community engagement means that meetings don’t particularly work if you want to “hear” from marginalized communities. There is a difference between being “at the table,” and being “effectively at the table.” If you don’t look at community engagement science, then the communities you purport to serve will not be at the table, or if they are there, the engagement will be token and trivialized. Of the 14 cities that got the ACES Connection grants, so far, I can’t tell that any of them has contact with the “recovery movement,” or whatever you call our community.

2. Effective health care messaging means reaching desired outcomes. In this case, reducing ACE scores and increasing community resilience. Other outcomes related to “knowledge of the message,” are only good if the message is good. They are a branding and marketing thing and not related to solving the problem. So, is harping on the neurobiology of ACEs an effective way to reduce them? Well, all kinds of academic literature — over 300 research articles — says NO. The mental health literature shows that harping on neurobiology in mental health care actually made things worse. It increased stigma, lowered compassion, reduced recovery rates, lowered people’s willingness to be friends with diagnosed people, and lowered people’s ability to do something about the problem. Start here with the classic Pescolido article on stigma and look at all the stuff that cited that article. It has 466 citations now and yet people without that knowledge try to “reduce stigma” every day.

So why would it be somehow magically different when trying to act on trauma?  Does biology info motivate action or is it something else? Seat belts; “click it or ticket.” Smoking; “smokers stink, don’t be one.” Teen drinking; “Parents who host lose the most.” Those are carefully derived public health campaigns based on what that audience needed to hear to motivate action. Why ignore the 300 research articles that says harping on biology made things worse in the mental health industry? Because all the anecdotal evidence in the world about people liking the ACES connection stuff, and you still gotta look at some science on what actually works. Trauma information is needed, of course, but what is the most effective way of getting that info into the world?

3. Action? “Awareness” does not necessarily equal action. Do we want to raise awareness of the problem or solve the problem? There are good tools to build resilience. Like this excellent how-to community resilience manual from the UK. Why not use them? Resilience and awareness are not the same thing. A messaging campaign does not automatically build resilience.

4. Community solutions to trauma?  Trauma is a social problem and not an individual problem. The ACEs Connection people just want to teach people how to self-soothe in response to triggers. Which is an important skill. But what about upstream solutions? What about ending poverty, racial discrimination, injustice, oppression, generational violence, etc.? Or at least making headway on those issues? The UK guide has good action steps on that.

I'm a walking miracle, a button given away at the Kansas certified peer specialist training.
I’m a walking miracle, a button given away at the Kansas certified peer specialist training.

You know what I got in response to raising those issues in the ACEs Connection community? Crickets. No one has answered those questions. People have responded to those discussions by saying, “Of course we need trauma info.” “This stuff helped me.” “This stuff helps my clients.” And worse….”You need to be nicer as an advocate.” “You will burn out as an advocate.” and “You need to do more self-care.”  OR, “This is a valuable discussion” BUT still not talking about the issues. Please feel free to create an account and tell them what you think about all that.

And when you comment on this blog post, if you say, “Well, Corinna sucks as an advocate,” instead of responding to the actual issues and actual science, I’ll know who you are, too. Hint: the issues are numbered and bolded above to make it easy. And I know I suck as an advocate, but it’s F-ing ridiculous to give out a $300,000 grant that doesn’t include real science or real community engagement. And someone has to point out naked emperors.

So, I know trauma is a big deal. But how do we best talk about it? Do we let a bunch of social workers who know nothing about our community start a health care messaging campaign that disses huge amounts of relevant research? Well, I guess we already did that. Because they are out there.  And you too, can tell them what you think. Or you can tell me I’m an asshole. I’m fine either way as long as you cite some data and don’t just make stuff up.

So what are we doing to to do about it? How do we shape OUR OWN conversation about trauma? Do we want a biology-based narrative about how sick and injured and hopeless our lives are? Or do we want real skills, real compassion, real community action?

Back me up or tell me what I’ve missed. But don’t tell me to go away. Because I’m in this for the long haul. I made a video in response to the local ACEs Connection project director. She asked me, “Who is this recovery movement?” Or whatever we call ourselves. Well, we are the ones who live this need for community solutions every day. We are the ones who get pepper sprayed when the system gets it wrong. We are the ones getting shot by cops when the system gets it wrong. You do not know who we are? We are the ones who know these answers you seek. Why are you not talking to us?

Share my video.

 

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21 COMMENTS

  1. I agree, a lot of the professional response to the ACEs research is “we need to do more self-care so we don’t get burned out.” It seems that most miss the point regarding stopping oppressive practices, including those oppressive practices we use to “help” our clients that end up traumatizing them yet further. As for looking “upstream” and ending oppressive practices across society, it’s not even on anyone’s radar.

    As many projects, it has become another way to get grant funding, rather than an effort to transform how we do our work. Of course, to REALLY apply “trauma informed care,” the first thing you’d have to do is toss the DSM and stop “diagnosing” people who are reacting to trauma. And we all know how likely THAT is to happen any time soon.

    As Upton Sinclair once said, “It is hard to get people to understand something when their salary depends on their not understanding it.”

    —- Steve

  2. Basically, like so many mental health projects from `social’, psychological and neuro`science in psychiatry the name of the game is WA*K. All these earnest, insightless wa***rs sit around congratulating themselves on all they’re doing for `those poor people out there’. Marie Antoinette , `Let them eat cake” had as much understanding and empathy as these people. And it’s not just a difference in social class, education, income – some of the greatest reformers came from privileged backgrounds, e.g. Wilbur Wilberforce, a very `upper’ class man, fought tooth and claw for the slaves, Florence Nightingale got her hands very dirty. It’s basic snobbery, `we are better than those people and we will make ourselves feel good by offering alms, alms that WE feel THEY need’. C.S. Lewis got it right, “Of all the tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive… [for] those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”

  3. Hi Corinna – thanks for post, I admire your honesty & tenacity.
    I’ve been supportive of the “ACE’s movement”, so your experiences & analysis are important to hear. I’d like to respond to 1 thing, (the rest I’m still mulling over). The focus on trauma biology hasn’t created the disconnect for me, as it has for you. I thought, unlike biopsychiatry message of it’s a disease, chem imbalance, etc… ACE’s emphasizes the contexts, the impacts on neurodevelopment of adversities such as poverty, discrimination, neglect – but clearly call out the toxic stressors in the environment. The good news, unlike genetically based brain diseases that do create stigma, is neuroplasticity – improving the environment, income inequality etc… improves all of our brains/spirits. Locating the defect/disease in individuals is much different than ACE’s recognition of social conditons & maltreatment. For me, ACE’s approach of understanding “what’s happened to you” can create compassion, rather than more stigma & othering.

    • I agree with what you say, Wayne, but I have to say that I’ve heard a lot more about how early childhood trauma damages the brain, and a lot less about research by Bruce Perry and others showing that RELATIONSHIPS WITH HEALTHY ADULTS are the best way to heal a traumatized brain. I’ve even heard the neurological damage done by early childhood trauma used as an excuse for why drugs are needed, because after all, these kids’ brains are damaged, what else can you do?

      Unfortunately, almost any research can be turned on its ear to serve the needs of those making up the rules. TIC is no exception. I really do think it’s a vitally important movement, but cooptation is a danger that is always looming.

      —- Steve

  4. I thought your first point was interesting.

    I have been criticing a variety of UK social movements recently and have notices a pattern that others have noticed in local council run community engagmenet programmes and it is about class.

    Basically middle class managers, or upper middle class political organisers, think they know it all.

    They say they want to work with manginlised communities but they do it in a way that they think is right. They callange sexist langauge but they will not provide a creche. They challange racist langauge but will not actually ask black communities what they need to contribute and paticipate.

    In social care consultancy work the managers will pick service users for service user consultancy committees who toe the line. Managers will only listen to those who echo back what they already believe – and as they have done the training and read the books they know how to do these things and what marginlised communities, or the tramatised, really need. They think they do not need to listen or find out what marginalised communities really experience or want.

    They do not know what real community development is. They have shallow ideas of participatory education.

    I think you are looking for real participatory education on ACE issues and what you are getting is patronising managerial b*ll*x. Well funded managerial b*llox by the sound of it. But it is still patronising managerial, middle class knows best, shut up and keep that smile on your face, b*llox.

    • “self soothe in response to triggers,” isn’t that, calm down, shut up and be grateful for what you’ve got”?

      This is like the UK gov putting money into loads of short courses of CBT because it will get people back to work instead of addressing the bullying, poverty and such like that actually cause people so much stress they have to take time off work.

      It is b*ll*x: patronising middle class b*ll*x.

  5. “But our society has tended to treat the abuse, maltreatment, violence and chaotic experiences of our children as an oddity instead of commonplace, as the ACE Study revealed.” This is a quote from Dr. Robert Anda, the co-director of the ACE Study with Dr. Vincent Felitti.

    I believe that this is one of the most important things that the ACE Study points out for Americans to think about and deal with. This is something that no one wants to think about and deal with. No one in the general public knows anything about this study and when they do hear about it they try to deny the results that it points out to all of us. The sexual, physical, and verbal abuse of children is alive and well in our culture and yet we hide our heads in the sand as if nothing at all is going on.

    I don’t find Felitti and Anda to be promoting the biology of mental illness and in fact they do talk about neuroplasticity. Dr. Nadine Burke-Harris, an African American pediatrician who works in the poorest section of San Francisco doesn’t seem to promote any biological basis for the psychological and emotional distress and the results that stem from experiencing such distress. I don’t believe that she promotes the drugging of kids in any form, but she does work to get the ACE Study out in the light of day for everyone to have to look at. But people don’t want to look at it. It’s all too awful because on one wants to believe that people are capable of doing such incredible harm to children, especially the family members who are supposed to watch over and protect said children.

    I don’t believe that it’s the ACE Study that is at fault here and I don’t think that’s what Corinna is stating. But, like so many other things that have happened, it sounds like the system is trying to take over and co-opt something to turn it to its own favor. They’ve done it to “recovery” and now they’re doing it to the ACE Study. The question is what are we going to do about it? We let SAMSHA destroy our yearly conference, turning it into the Alternatives thing that goes on every year now. Corinna has raised the question and it will be interesting to see what we do about it all.

  6. I agree it’s destructive to dwell on the effects of ACES on the brain. It invites stigma from outsiders and demoralization within those who struggle: it becomes too easy and convenient to conclude that, whatever the cause – ACE’s or genetic brain defects – this person’s brain is really messed up, and it’s well nigh impossible to reverse.

    Brain changes or not, the important point is that people always have an inherent drive and ability to recover. We need profound safety, loving relationships among peers, and people willing to go to the mat for each other. None of that is enhanced by potentially fatalistic talk about all the ways a person’s brain has been messed with.

    I am a social worker, but I strongly agree that we often hide behind our degrees, diagnostic labels and theories and offer top-down “help.” Instead, people need respect and to be listened to, listened to, listened to. I hate talk of “empowering” people – that implies that “we” have the power and can “give” it to someone else. I assume each of us already has power, and we are just waiting for an honest and safe relationship that supports our using that power.

    In terms of reducing ACE’s, I think we inflict ACE’s on others (and fail to support their recovery) to the degree that we ourselves have not lived with close, loving, supportive relationships – usually because we and those around us are systematically mistreated, to one degree or another, by the social system (based on race, sex, class, religion, ethnicity, age etc.)

    We don’t get people to recover from their own oppression and to stop oppressing others by lecturing them about their brains and the brains of those around them. It’s all about honest and loving relationship, offered with the humility of knowing that when it comes to basic humanity, there are no “experts.” We’re all just people, in this thing together.

  7. Hi Corinna – I don’t know you and you don’t know me – but I’ve said it before, the main question that clinical/industrial psychology poses is, “how can we – as a society – continue inflicting the SAME forms of structural violence and oppression on people, but not have them ACT so traumatized/debilitated by it?”

    The way you’re talking about peer trauma/recovery movement sounds way better – and a world away – from how that’s being (or can ever be) talked about in the state-funded Social Work world. The kind of lense that doesn’t just go, “oh, well, the traumatized people can fix themselves sometimes sorta,” but recognizes, starts from the ground, that madpeople and psych survivors are excluded and pathologized for the very strength of their visions, how much they embody what the ruling class wants to bury, and how loudly they say the politically unnameable.

    We’re not going to find that there with them. We’re only going to find that in affinity with other outsiders and people struggling against patriarchy, white supremacy, all other power structures…
    But I’m also looking at your (excellent) article on coalition work damaging advocates. And how a discussion came out of it – on how that damage/burnout happens, not just trying to engage with state/bureaucratic groups, but even in working with grassroots movements, climate activism, etc. So I don’t want to say anyone should be banging their head against a wall if that’s what’s happening!

    I have a couple old friends out in your part of the country. Maybe we could compare ideas and projects if I’m ever out that way.