“Tell about it.”

Trauma-Informed Design Reflections #11

Introduction

Welcome to the 11th edition of the trauma-informed design blog, a weekly series of thoughts and reflections on the intersection between trauma and design.

This week (29 Apr–05 May) I attended the 35th Annual Boston International Trauma Conference and I wrote about what I learned.

Learnings from the 35th Annual Boston International Trauma Conference

(If it was me, I’d pick a shorter name)

One of the best things you can find on the Internet is Margo Aaron’s blog. She recently referred to “Instructions for living a life”, as they were given by Mary Oliver in her poem Sometimes.

Instructions for living a life:
Pay attention.
Be astonished.
Tell about it.

And this is what I’ll do.

Last week, I attended (most of) the 35th Annual Boston International Trauma Conference, which was organized by the Trauma Research Foundation. In case you are unaware Bessel van der Kolk, author of “The body keeps the score” is the chair and co-founder of the Trauma Research Foundation.

I paid attention and I often found myself astonished by the content of the sessions. So today, I will tell you about it. I will emphasize on what is relevant for trauma-informed design and on what is overall important for the field of trauma.

This blog-post is not sponsored.

Neglect-informed design!?

The first session I attended was a three and a half hour talk by Ruth Cohn, MFT on neglect trauma. For me, it was the highlight of the conference.

There are a lot of nuances when working with neglect survivors and so much to write about. Instead of trying to squeeze everything here, I will write extensively about it in my next blog-post. For now here is a small piece:

It’s very hard for neglect survivors to build relationships, because they rarely trust that the other person cares for them. When she was talking about her story, Ruth Cohn said that for the first years of going to therapy the relationship building would start from scratch in every session. She wouldn’t believe that the therapist remembered her.

Some design processes (e.g. co-design) are structured around relationship building. I believe they can provide a lot of value, but if we work primarily with neglect survivors building relationships might be very hard, often impossible. Relationship building can be a very useful approach, but there are limitations to that.

Is there space for IFS in design?

The first day of the conference was pretty insane. Ruth Cohn’s session was followed by a three and a half hour talk from Frank Anderson, MD on transcending trauma with Internal Family Systems (IFS).

IFS is a Parts model, which practically means that it views people as naturally having many Parts or sub-personalities which can interact with each other. “Part of me wants to go out but part of me would rather stay in and read” is a good way to start thinking about it.

This way of looking at people would imply that when we are working with a research participant or with a co-designer we might be working with one of their Parts and not with their whole system. This then means that the outputs of the design process might solve the needs of the Part that participated, but be in conflict with the needs of the Parts that were missing. The question “who is not here?” can take a whole new meaning when taken inside. (The Parts of trauma survivors very often have conflicting needs, or conflicting ways of addressing similar needs.)

Another connection between IFS and research/design has to do with emotional regulation. Dick Schwartz, the founder of IFS, believes that we can regulate emotions without needing to use somatic techniques and that this can be beneficial. We could potentially use that idea to regulate during a research interview.

I have found IFS to be very effective when working with trauma. At the same time it requires plenty of theoretical understanding to get started. There can be interesting intersections with design, but I won’t dive any deeper here.

Integrating modalities

Both Bessel van der Kolk and Frank Anderson independently talked about the need to integrate multiple modalities when working with trauma.

Bessel van der Kolk said that using a single modality (e.g. EMDR) to treat trauma is like trying to build a house using only a hammer. He argued that for therapists to be effective in their work they need to combine multiple modalities.

Frank Anderson said that a lot of important models for treating trauma have been designed and are becoming more mainstream now. But, he also said that none of these seem to work for everyone. He suggested that it’s time to focus on understanding when each model can be used.

There are a lot of ways in which those ideas can be applied to design. Most importantly I believe that it is important to learn and practice multiple design disciplines. Trauma-informed design alone isn’t sufficient. Inclusive design, radical participatory design, design justice, human-centered design… they all have a place.

Moving beyond “what happened to you”

During day 3 Bessel van der Kolk said:

The other thing is whether you call somebody traumatized is purely an arbitrary choice. […] The word trauma was never mentioned and then it became a big thing, “What is your trauma?” Oprah Winfrey writes a book, What Happened to You? It is not just that, the most important thing is who was there for you? How did people respond?

The whole contextual enrollment is oftentimes forgotten. If you are part of a supportive system, you are likely to not get so traumatized by the same incident. Social supports in the context is everything.

“Tell me about your trauma.” No, tell me about everything. Who was there? How did you cope? How did you feel safe? How did you manage all by yourself?

(AI transcription)

Once again I was astonished. And this was not the only time he emphasized the importance of relationships in both the treatment and most notably the prevention of trauma.

What’s really interesting here is that both design and technology can create a space to build relationships. So, could a trauma-informed service or experience be preventive instead of reactive?

Stress on the brain

That same day Dr. Amy Arnsten delivered an incredible session on the neurology of stress. She described the not-so-simple mechanisms behind how stress operates in the brain. The general idea was the following:

We have two regions that are responsible for activating the stress response: Brodmann area 25 (BA 25) and the amygdala. These two work together. BA 25 is connected with our Prefrontal Cortex (PFC) which is responsible for higher order functions. When we are in a state of safety the PFC is online and we can think rationally. When we are activated, BA 25 and the amygdala turn off the PFC and we are emotional and reactive. We literally do not have the capacity to think.

When the PFC is offline we can struggle with things like sustaining attention, inhibiting distractions, and dividing attention. Dr. Amy Arnsten also said that when the PFC is offline we are more susceptible to misinformation.

Another key point of that session was that with chronic stress, the process of the PFC turning back on becomes less flexible. Which means that chronic stress makes stress more “sticky” — the mechanism that is supposed to turn off the stress response is itself turned off.

The thing is that so many of the interactions we design start breaking down when the PFC is offline. The assumption itself, that a thinking human is interacting with our services or experiences, collapses. And at the same time there are countless things that could activate a stress response in both our physical and digital world. So we are left with things that simultaneously turn off our PFC and are hard to use when our PFC is off.

How can we change that? How can we design for activated users? Can we change how an interaction works when a user’s brain state changes?

Psychedelics?

There were a lot of sessions on psychedelics. To not mention them would be a big miss. The science presented seemed promising. At the same time, I do not see an intersection between them and design; especially while they are in an experimental state.

Regardless, it was very interesting how the speakers emphasized that psychedelics are not a magical cure. Instead they are a tool that can assist clinicians (therapists) in doing their work. This is different from the traditional medical approach, and it is very hopeful to see people advocating for that.

The social context

During the last day of the conference I attended two talks that both touched on society’s impact in recovering from trauma. That was not the main point of the talks, but it was significant.

Alicia Lieberman, PhD talked about a therapy modality called Child-Parent Psychotherapy (CPP), which engages both the parent and the child in the process. The modality seemed to be effective, but the speaker also highlighted the importance of public policies when working with families.

She asked: how can we support children when there are no social policies to support families and protect children (e.g. living wages, protection from gun violence)? And, she stated that: “clinicians cannot do it all, so we need to be passionate advocates for public policies that protect children and families on every level of their needs”.

I’m sure you already see the connection. As designers we need to do the same.

Mirjana Askovic, PhD then talked about refugee trauma and about her work with neurofeedback and deep brain reorienting (DBR). I’ll take a moment to tell you about the latter because I had never heard of it before and it blew my mind.

The idea behind DBR is that trauma starts with a shock which takes place before any emotion arises. This preaffective shock is stored in the brain stem, while emotions are stored in the limbic system. With DBR, we can access the preaffective shock and work directly with it.

Let’s get back on track. Mirjana Askovic works for an organization called STARTTS and she talked about that organization’s biopsychosocial model of care. With this model, STARTTS extended its focus beyond the individuals to their families and their communities. For an individual to heal they need to feel safe within their community and this model directly addressed that.

I usually write about being trauma-informed on a personal level, but this is often not enough. We need to extend beyond that and explore what it means to be trauma-informed when working with families or communities.

Closing thoughts

I didn’t cover everything. I couldn’t possibly. The conference was too good to fit in a blog-post. But, hopefully I drove some key points home. And, hopefully you get something out of it.

If you’d like to dive deeper in any of these topics, feel free to reach out!

Notable on trauma-informed design

This section doesn’t include any personal reflections, instead it includes things that happened in the trauma-informed design field and are worth giving a look at (according to me). Enjoy! :)

• Carol Scott will give a talk on Trauma-Informed Moderation on the All Things In Moderation Global Event. Her work on trauma-informed design is excellent, so I highly recommend that. The event will take place on the 16th-17th of May. (online)
• Jax Wechsler’s next training on trauma informed design research is coming up in June (11th, 13th, and 18th, also depending on time zones). I have attended this training in the past and it is very good. You can find the registration link here. July registrations have opened as well. (online)
• The Trauma-Informed Design Discussion Group is an amazing community to join. They offer support, share knowledge, and organize monthly calls on trauma-informed design. I can’t recommend them enough! You can request to join the group using this form. They are also building a really great directory of resources, which you can find here. (online)

(This section does not include promotions. Everything is being shared with permission.)