So, I've started some discussion on this campaign in general. Of course INFO on trauma is useful, BUT:

1. Are we using evidence community engagement practices?

2. Are we using evidence based health care messaging techniques?

3. Are we providing people effective tools for social change, or community organizing?

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.

None of which answered the questions above. So can we please talk about the issues at hand?

1. Effective community engagement means that meetings don't particularly work if you want to "hear" from marginalized communities. There is a difference between "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.

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 a branding and marketing thing and not related to solving the problem. So, is harping on 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.  

So why would it be somehow magically different when trying to act on trauma? Look at health care messaging about seat belts, around smoking, around teen drinking, around AIDS. Does neurobiology 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? What, you never heard of that research? time to look, EH? Because all the anecdotal evidence in the world about people liking the ACES 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. And motivating action? Do we want to raise awareness of the problem or solve the problem? There are good tools to build resilience. Why not use them? Resilience and awareness are not the same thing. A messaging campaign does not automatically build resilience. "Awareness" does not necessarily equal action.

So GO: talk about the issues above. Let's not talk about Corinna as an advocate. Bring your data to bear and let's debate some science. If you don't know the science, HOW do you think you are going to do this work? If you are paid over $30k and year and you still don't know the academic literature in YOUR OWN profession??? Then it's time to be the change you wish to see in the world and start doing some homework.

Original Post

Crickets, huh? You mean this entire community is full of people who don't know how to talk to the people they purport to serve, and full of people who don't know the academic literature in their field. Pathetic.

How do you think you're going to help anyone if you don't know the data on how to help and you aren't asking the people who "need help" what we actually want and need? 

This is just another round of mental health providers imposing their agenda on people. Fool me once, shame on me, fool me twice, shame on you...

Fool me once, shame on you, fool me twice, shame on me...

Ok Corinna, I'm going to chirp up a la cricket style!

I hear your frustration and desire for a discussion about resilience etc and how you're feeling you're not being heard and responded to.  It is a relevant discussion topic.

I read the articles you posted earlier re empathy from psychiatrists etc about the effects of perceiving it as biological vs psychosocial.

I have come to the conclusion that as yet no one has anywhere near a definitive answer to successfully 'curing' people, as one can with a broken leg more or less, in this highly complex area.  It IS in its infancy and that needs to be taken into account. The leading experts on some of the brain research that are presented on this website are much more inclined to have empathy.  As per your article, judges may include acknowledging it as a moral issue, doctors more so a biological one.  Which is a little convenient, when if they were to speak the truth would be to say something along the lines of, "So, you know this is very complex and I'm not really sure what to do, or if it'll work, so I'm going to mainly ignore the psychosocial side, cos I need to appear in control and an expert.  I'm actually out of my depth. Here take this medication. My profession, ego and paypacket rely on this approach.  Sorry about that.  I'm close to retirement, thank God, so this approach should see me out".  This of course only applies to the majority of people of these types professions(!).

So I believe that what you're asking for cannot be resolved (as yet) and discussion would be very long...  But as I said earlier, brain research is in the delivery.  And it should only be part of the delivery. The delivery will only be as good as the professional wants it to be as truthful as possible.  As an example, just how do you treat people who have very high ACEs little resilience etc.? They have no idea!  So they wheel out the OLD diagnosis and prognosis approach where they feel in control. And in some ways it is understandable!

People with a lot of knowledge eg Bessel van der Kolk, in the end are advocating for therapy such as yoga, mindful meditation etc., so really no one is coming up with THE definitive ANSWER!  To me, there is something before such therapies that needs to occur.  But just what is it?!  Severe trauma is severely deep, and most therapy just touches the sides.  Even good therapy, where the therapist is genuinely trying their best.

PS Don't get frustrated with me - I tried May have missed again, but I tried...

 

Last 'daring' bit:  at least if all therapeutic professions knew about ACEs, that it was a given, they would surely(!) be more inclined to take in the psychosocial than currently exists.

This is why ACEs promotion is important, I believe.  This website does it well.  The next step is being able to have a section that is for resilience/bouncing back from deep trauma that is closer to being effective.  Everyone 'knows' about self compassion, self care, self soothing etc but how to truly reach the so called unreachable.  The self sabotaging etc etc.

I once read that it's not only the damage caused by ACEs etc, it's that mainstream denies, belittles, is apathetic and/or ignorant, that is just as damaging.  Rings true for me.  Being  truly, deeply understood is at the core of resolution.  Not just empathy but true understanding.  And for this to occur, I believe therapists really need to have been there, and have 'recovered'.  Only they can speak the truth as one who has lived it.  It is 'the truth' I believe we are all after.

Did I go off track again??!

Hi Corinna and Mem, 

This is my first post to AcesConnections.  I am a new member.  I'm going to try to keep my comments brief... but that probably won't happen... Lol.  The reason I wanted to respond was that I did read Corinna's articles on Mad In America.  I have followed both Aces Connection and Mad in America over the past couple of years.  I am dedicated to trying to create healing communities and a more trauma survivor friendly/informed society.  

I just wanted to say to Corrina, I hear the frustration in your words.  I know as a survivor of both psychiatry and childhood trauma, sometimes more than anything else, I feel the need to be heard.  

I feel these are exciting times as well as challenging times for many of us that want to see sustainable change in the way that those with mental health issues are treated.  It's exciting insofar as there has been so much awareness building that has occurred over the last couple of years in several areas that pertain to the furthering the well being of the trauma survivor population as more and more information is disseminated (this includes: AcesConnection, Hearing Voices, voices from Mad In America, peer support movement, neuroscience, etc. etc. ) 

Where I think we get stuck though, is in implementation.  There is a difference between "talk the talk walk the walk".  I must admit that I, myself, am not the most patient person on the place of the planet.  I'd like to see change NOW...or at least before I die.  

Corrina, while you may not be feeling heard (and I can relate to those kind of feelings), I would only suggest it is because not everyone shares exactly the same agenda.  Not everyone cares as passionately as you do about the issues you hold most closely to your heart.  And the same goes for me.  For example, my passion is in creating more trauma informed hospitals, doctors, nurses and psychiatrists. I see building awareness regarding the significance of the "adverse childhood experience" as a leverage point for the kind of advocacy work I hope to do.  I am also passionate about building healing communities (providing more access to "non traditional" healing services as well as peer support).  And I also see a need for trauma survivors to have access to more traditional mental health services - such as trauma informed therapy.  I don't believe these are your passions, but maybe there's a way to bridge the gap. Or maybe I am naive or overly idealistic. 

What I have observed within the psychiatric survivor community (and correct me if I am wrong) is that many survivors do not trust the "system".  Many have been kicked around, retraumatized, been undeserved, marginalized, denied proper services and treatment.  It makes perfect sense to me why these folks wouldn't want to re engage in a mental health community that they feel does not fully represent their interests especially if there are trust issues.

I don't feel I have the 'solution'.  But I am committed to looking for answers and trying to work with others to build consensus.  I know there are some working models out there.  Leah Harris' work in DC is one model for building trauma informed communities.  Although I am not really familiar with the particulars of your work, I'm sure your particular areas of expertise and experience is also worthy of consideration.  

I cannot address every point you made because my post has already become a bit lengthy, except I'd respond to your questions:

1. Are we using evidence community engagement practices?

2. Are we using evidence based health care messaging techniques?

3. Are we providing people effective tools for social change, or community organizing?

You commented: "No one has answered those questions."  I think that the reason no one has responded is because these are not things that others have thought through with as much depth or forethought as you.  I do not know the specific reasons though, I can only think that maybe it's not fully on radar. Maybe that was your point.  Maybe that points to a limitation in the Aces Connections network or points to a potential area of growth or expansion.  Or maybe, Ace Connections is not the proper platform for this kind of discussion.  

I'm making these points because I am trying to open up the discussion for friendly and open dialog with others that share the logistics of creating supportive communities that facilitate the healing of trauma and ways to provide mental health support to marginalized individuals that are in great need of support. 

 

 

These comments are in response to Mem Lang's posts: 

Mem Lang said: 

"Being truly, deeply understood is at the core of resolution.  Not just empathy but true understanding.  And for this to occur, I believe therapists really need to have been there, and have 'recovered'.  Only they can speak the truth as one who has lived it.  It is 'the truth' I believe we are all after."

Yes. This has been my experience of the trauma healing journey.  As Bessel van der Kolk states, "more than anything else, a trauma survivor wants to be seen, heard and known". This quote resonates with me.  I have experienced much invalidation from mental health professionals and healthcare providers that just don't get "it".  They don't understand PTSD and certainly not complex trauma. The psychiatrists I used to see don't understand.   My doctors don't understand. Nurses don't understand.  Hospitals don't understand.  My neighbors don't understand.  And even though I am now in recovery (I no longer experience Complex PTSD) my family still does not fully understand what I endured.  It is a deeply alienating and isolating experience.  The ONLY person on the planet that I felt understood what I was going though was my trauma therapist.  She provided the 'holding' for the immense pain and suffering I was enduring on a daily basis for almost two years.  She is a trauma survivor herself.  I don't know what I would have done without her help.  I don't think I would have killed myself, but it quite easily could have gone that way.  

During my experience with complex PTSD, I also provided peer support to others with complex PTSD.  I became acquainted with far too many people that were suicidal during this time, that were desperate for support and came close to killing themselves. This is when I really had my wake up call - things need to change!

Mem Lang also said: [doctors tend to have this kind of mentality]  "So, you know this is very complex and I'm not really sure what to do, or if it'll work, so I'm going to mainly ignore the psychosocial side, cos I need to appear in control and an expert.  I'm actually out of my depth. Here take this medication. My profession, ego and paypacket rely on this approach.  Sorry about that.  I'm close to retirement, thank God, so this approach should see me out".    

Although I am not a mind reader, this has been my sense of the doctor's perspective as well based on their behavior, treatment and attitude towards me as a childhood survivor of multiple major traumas.  

1). I not sure exactly what to do or what you expect me to do about the fact that you claim to have a trauma history.  This often translates into: invalidating or gaslighting behavior (i.e. - either verbally, "You didn't experience that, did you?"  "It can't be that bad. " "You know, you just need to move on from the past. " OR dismissal: "That's not part of the agenda here." "I don't have time for this."  "You'll need to talk to your therapist about this."  One's trauma history or PTSD symptomatology is seen as completely irrelevant to care of the patient.  These can be retriggering and even retraumatizing messages because those with childhood histories of abuse and neglect received invalidation as children.  We were often treated as if our needs were not important.  We did not exist in the eyes of our parents.  

While doctors don't see trauma informed care as part of the Hippocratic Oath to "do no harm", they do harm when they are not present to the needs, preferences and feelings of their patients.  Doctors treat people instead as a diagnosis, as a set of symptoms as a container or vessel for medications.  The ACE Study challenges doctors to become more equalitarian and patient focused.  The ACE Study also challenges doctors to develop more holistic approaches to healthcare that recognize the connection between mind, body and soul.  As Dr. Gabor Mate powerfully argues in his work, drawing upon the findings of the ACE Study, diseases of our psyche or 'souls' find their manifestation or 'voice' in addiction or diseases that appear in our bodies, for example. 

The reason I am committed to disseminating information about ACEs is because we need people to move past the thick wall of denial that they have built around themselves and to "wake up" to the fact that there is too much pain and suffering in this world as a result of trauma.  We are present to a trauma epidemic. However, necessary systemic change is not happening.  And it won't happen if people do not have the "will" to change the status quo. The reason that the ACE Study is a powerful framework is because it provides the empirical rationale for making changes that result in social justice for survivors.  There can be no more "business as usual", there can be no more hiding behind the curtain, or covering one's eyes or ears to what people choose not to see.  The evidence is in.  

 

I have been developing a curriculum with a colleague where we take the complicated sciences of neurobiology specific to traumatic exposure and teach it in a way that is applicable and useful to clinical, medical, and recovering populations. If anyone is interested in hearing more about what we are doing and the impact we see/anticipate to see, please feel free to contact me:

winden@hessandrowe.com

Winden Rowe, MS, Community and Trauma Counseling

www.hessandrowe.com

Regarding the inclusion of neurobiology as part of the "message" about mental health, healing and traumatic exposure, the fault lies not with neurobiology. Science is what science is. The issue is how the message is presented. The findings of neuroscience indicate that healing the nervous system can and does occur. Things like mindfulness, yoga and even regulated breathing help restore the balance between the sympathetic and parasympathetic nervous systems and contribute in no small way to enhanced neuroplasticity. Let us not throw the baby out with the bathwater.

Hi Jennifer, welcome and thanks for responding.  I was waiting for Corinna to respond before I did...

In response to my quote re the doctor's approach: I don't believe that there is actually even acknowledgement that it's complex!!  I was being kind!  

As it's ANZAC day soon in Australia, more and more acceptance of PTSD as something real is occurring.  Discussion is taking place on the effects of this on soldiers. I believe that this platform will enable Complex PTSD or whatever the current terminology used, to be eventually acknowledged.  A type of piggy back arrangement. So it's gonna be a little while...  DSM 5 will take even longer I suspect!!  But who listens to them?  Only the majority the doctors, therapists!  If it's not on there, it doesn't exist to a good many of them.

Interesting you said you have recovered from CPTSD.  How'd you do that?!  I thought I had until I was reintroduced to another NM boss which reset the same ol' wheels in motion.  Wasn't sure if one can ever completely recover...  Or if so, there was an awful lot of hard, persistent work going on on your part!

Which also brings me back to doctors.  If they could properly name it, one would be so much less susceptible to future crises.  If not properly confronted, that's when the cascading and continual biological health issues arise.  Be it mental, physical or both.  There is a professional responsibility in their job that is not occurring.  It can indeed be life and death.  Serious consequences. They could be prevented from getting that serious.  So even the work of people understanding ACEs and TIC is so very still in infancy.  I feel I'm so often repeating myself...

The other part that no doctor can fix is the part of not having a family of origin or extended family that can support you as you support them. Team work, on the same side does not compute with my family of origin! This is part of why this continues to occur, the intergenerational abuse cycle. You can stop the cycle, but it's a lonely hard slog of a process much of the time, but at least the next generation has a far better chance of a healthy life.  Most doctors, etc come from middle class backgrounds that really have no clue about what this feels like and see it as an irrelevant factor.  Or choose to.  But it should be mentioned!   And that you have to form a family of your own making...

And as for mainstream understanding any of this?  Now that is going to take quite some time!  But any minority group understands this one!

Put simply:  validation that yes, this happened to you, it was bad.  I can see by your ACE and resilience score that... Truly understanding what that person has been through.  If nothing else just this.

 

I thought Gabor Mate, M.D.'s article in the Winter 2016 issue of YES magazine  ("How To Build a Culture of GOOD HEALTH"), addresses many concerns noted here. The EENet (Evidence Exchange Network in Ontario) serves PWLE's (People With Lived Experience) and Clinicians, etc. 

 

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