Neglect-informed design

Trauma-Informed Design Reflections #12

Introduction

Welcome to the 12th edition of the trauma-informed design blog, a weekly series of thoughts and reflections on the intersection between trauma and design.

This week (06–12 May) I explore the idea of neglect-informed design, building on top of what Ruth Cohn, MFT shared in her session Why Nothing Matters: Introducing Neglect Informed Psychotherapy in the 35th Annual Boston International Trauma Conference.

Designing with survivors of neglect

In my previous blog-post I talked about virtually attending the 35th Annual Boston International Trauma Conference. I started by writing:

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.

I intentionally didn’t expand on it any further. In today’s blog-post, I’ll explore how Ruth Cohn’s insight could be applied to design.

What neglect trauma is

In her talk, Ruth Cohn said more than once that “Neglect is the story of nothing.” And I believe that this is the core of neglect trauma: when growing up, nothing happened, when something should have happened.

Ruth Cohn said that at the heart of neglect trauma is what Mary Main called the dilemma without solution. That is: “The source of longing and the source of terror, pain, distress is the same person.” Because a child cannot possibly navigate this paradox (there is no solution) they collapse.

This collapse response (low freeze) is very present with neglect survivors and guides many of their behaviors.

Why it matters

Ruth Cohn placed a lot of emphasis on the impact of neglect trauma, highlighting that it is not a “small-t trauma”. Instead, she argued that it might be the most severe trauma there is because “it is so core, it
is so early, it is so close to the bone.”

And yet, it’s often unacknowledged. “Nothing happened to me” is a common phrase spoken by neglect survivors and it can act as a barrier that stops them from validating their experience. Neglect can be harder to spot and neglect survivors rarely get any attention or help.

In addition to that, neglect trauma has a lot of nuances (as does any type of trauma really). In neglect trauma, there is no story, no narrative, not only about the trauma itself but often about someone’s whole life. Working with something that didn’t happen is different from working with something that did.

And just as neglect trauma has its nuances, so does neglect-informed design.

Experiencing consistency

The very first thing that Ruth Cohn said was that we were going to start on time. That mattered. It provided consistency by giving participants something they knew they could depend on.

Consistency is very important for neglect survivors. These were the kids who waited until it got dark, not knowing if someone would come to pick them up. And consistency is something that we can model in our experiences and services.

In research consistency can look like starting on time, providing questions in advance and sticking to them, explaining the flow in advance and following it, and paying participants the agreed amount in a timely manner. Consistency can also come from using a structured or semi-structured interview style during research.

In design consistency can look like things happening in the same way each time. When someone fills the same form three times in exactly the same way it works all three times, or it fails all three times for the same reason. When someone presses a button in an app the result is the same each time. And if in either case this isn’t happening, a clear reason is communicated.

When working in a neglect-informed way our processes and our experiences are something that the people we engage with can depend on.

Bearing boredom

Another point that Ruth Cohn made sure to bring home was how hard it is for neglect survivors to experience boredom. She used phrases such as “Boredom is unbearable”, “Boredom feels like agony to them”, and “Boredom is lethal to them.” She shared a story of a patient who would intentionally start conflicts by saying something provocative in order to “get things moving”. And, she mentioned that many neglect survivors engage in behaviors that are characteristic of ADD for that reason.

What she didn’t touch on, was the impact that the Internet has in this dynamic. In his song Welcome to the Internet, Bo Burnham captures the essence of it with the lyric “apathy is a tragedy and boredom is crime”. And this can feel true as the Internet provides so much content and so many ways to engage that we can escape boredom whenever we need to. This creates a design challenge.

An escape from boredom can be adaptive for neglect survivors and the Internet can be a path towards that. At the same time, what happens when this outlives its usefulness? How easily can a neglect survivor unplug from something designed to continuously keep us engaged? And furthermore, is it ethical to profit from someone’s trauma response? A neglect-informed design must account for that.

Feeling heard

Everyone deserves to feel seen and heard. And yet, many neglect survivors have felt unseen and unheard for their whole lives. Ruth Cohn said that this can result in them feeling overwhelmed by everything they want to share at once when someone is finally here to listen.

This can have a large impact when conducting research with neglect survivors. For some, we might be the first person who has actually heard them. This can be very therapeutic, but it doesn’t come without its nuances.

Neglect survivors might unintentionally derail the space by sharing everything they ever wanted to share. How do we bring the conversation back on track without making them feel unheard?

Or, they might get overwhelmed by the emotional experience of feeling heard for the first time and shut down. How do we bring them back and continue the conversation? (Should we?)

And what if they feel deeply connected to us because of how profound this experience has been for them? How do we ensure that they don’t feel abandoned once the research interaction is over?

This situations are hard to manage. Doing research in a neglect-informed way means being prepared for them.

Building relationships

Potentially the greatest challenge of neglect survivors is connected to building relationships. Ruth Cohn shared some of her story in that talk and said that for the first five years of going to therapy the relationship building would start from scratch in every session. She didn’t believe that her therapist remembered her. Actually, she didn’t believe that she existed in her therapist’s mind.

This difficulty (impossibility at times) around relationship building stands in direct opposition to many contemporary design practices that center relationships (e.g. co-design). This not to say that those practices are problematic, I actually find them rather wonderful; but it is to say that they might not be the best way to work with neglect survivors.

I suspect that when working directly with neglect survivors more traditional ways of doing research might be a better fit. At the same time, it would be very interesting to explore how participatory research methods could be applied in this context. I strongly believe that “designing with” works better than “designing for”, but how can we “design with” when building relationships is not an option?

And there’s a second consideration here. When we aren’t working directly with neglect survivors, how do we ensure that we are not excluding them from our processes? I’ve been learning that asking “who is missing?” is an important part of a co-design process and I believe that “neglect survivors” can often be the answer. Practices that center relationships have the potential to exclude those who avert them.

All these are not to say that neglect survivors can’t be in relationships. Ruth Cohn started studying neglect by working with husbands of sexually abused women. But it is to say that relationship building can be extremely challenging for many of them. Being neglect-informed means staying aware of that in our processes.

Conclusion

I don’t believe that these are the only nuances of neglect-informed design. And no amount of thinking exploration can substitute research on the field. But this might be a good place for conversations on that topic to start.

And if you want to learn more about neglect trauma I can think of no better place than Ruth Cohn’s website.

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.)