We’ve always been big fans of Hanna and Marc, our friends at Fit Associates. We have many things in common: they’re partners in a two-person design shop, they’ve defined and redefined their design practice over the years, they love Pittsburgh, and they’ve found success in forming a tight-knit circle of friends and collaborators here. We’ve been fascinated and inspired by the trajectory of their work, and have had the good fortune to work with them as collaborators, and in many ways, their mentees.
We learned that Hanna developed ALS by watching a video she recorded to share the news. We were heartbroken for our friend, and struggled to imagine that something so terrible could happen to someone so deeply and genuinely good. Someone who brings so much love and light to the people whose lives she’s touched. The message she shared was profound, and we recommitted to continue learning from Hanna — soaking up whatever she might offer as she navigated this experience.
In just two short months, we’ve already had the opportunity to hear from Hanna and her tribe about their journey towards acceptance and what it’s calling them all to do, which they shared at CreativeMornings/Pittsburgh. We had the privilege of following along with her experience as she traveled to a writer’s residency at Trinity College in Dublin. And most recently, we signed up for the IxDA event called Design for the Inevitable, joining Hanna and Marc and fellow Pittsburgh designers, teachers, and facilitators in a conversation about the shadow topics we tend to avoid in our work and creative practices. If indeed we practice “human-centered design,” we must challenge ourselves to confront — and even incorporate — those universal facets of the human experience that are considered taboo.
We got seated at small tables for the event, and met Marc, Hanna, and Ventilator — whom we’ve met once before, and who Hanna describes as “quite bossy.” We (re)acquainted ourselves in our small groups by sharing something that brought us each joy that day. The caring, supportive, and amplifying dynamic of Hanna and Marc shined through, as it always does. They prodded one another to add in stories or extra bits of instruction as they facilitated the conversation. They encouraged the audience to indicate if we had trouble understanding Hanna, whose breathing and speech have been impacted by ALS. They kept a sheet of paper at their table for Hanna to jot down things she was having a hard time conveying, which she only used twice for that purpose. (We saw that Hanna also used the note to write “Good job Rettig!” with a smiley face—which made us grateful for the synergies and mutual support that can come from productive design partnerships.)
Hanna and Marc introduced the group to the idea of an “invisible divide” between the topics and challenges we have language to talk about (and often tools and budget to work on ), and those “exiled aspects of the human experience”—topics where there’s often no funding and no story of value. The provocation for the evening was for us all to consider what might be possible if we could break the habit of facing away from the shadow side.
Our first exercise in our small groups was to list human experiences that are acceptable to talk about and to work with in our teams, organizations, or families. These are topics that are easy to bring up, and that people engage with easily and see as valid areas for creative inquiry. When it was time to share out, there was ample overlap between the groups. We all knew the topics that are “good” for public consumption: home renovations, sports, pets, food, kids, tasks, hobbies, traffic, TV shows, and many more.
Our next prompt was to think of human experiences that are unwelcome—often at a deep, visceral level. We were encouraged to dig into our own personal experiences, or that of our family and loved ones, or even past projects. Marc asked us to reflect on experiences that are, “…profoundly life-shaping, but aren’t talked about. It’s scary to bring them up, either socially or in a project.”
For this step, Hanna and Marc requested that we each write a few topics privately on individual pieces of paper, which we then crumpled into paper balls. Following the PTP (“paper tossing protocol”), we stood and flung these paper balls across and around the room, back and forth for about a minute. Only a few attendees were hit in the crossfire.
“I thought that the trick with the balls and throwing them was a really great strategy because it felt like everybody got in a real playful mode. It was genuinely chaotic. It was like spitball fight, and that really reset the dial for the second call.”
— Workshop Attendee “S.”
Back in small groups, we took turns reading the topics we gathered in the snowball fight, and transcribing them one at a time into a list on the right side of our paper. The pace was slower and what was written was sometimes difficult to parse — not only because of the unfamiliar handwriting, but also because of the challenge of reading aloud and transcribing topics like “limitations that diminish capacity,” “not feeling good enough,” and “rape.”
It was powerful to hold other people’s words and expressions in that way. Yes we were throwing them, but we were also catching them. And being with them and unfolding them, and then sharing them out. There was something very powerful about that experience.”
- Workshop Attendee “G.”
To share out across groups, we hung our side-by-side lists on the wall in a gallery view. We walked around and read, reflecting to ourselves about what we were seeing. The body language in the room shifted a bit, with many crossed arms and furrowed eyebrows. In the discussion that followed, some noticed how it got a little bit easier to think about the topics once they were enumerated and out in the open. There was relief in acknowledging that “I’m not the only one” experiencing one of the topics that had been anonymously written. Many noted how well we all understand what we can talk about and what we can’t, even though these experiences are likewise commonly shared.
Some Stories and Provcations
As discussion continued, we talked about how we might break the traditional design mentality of always needing to “problem-solve” or “intervene,” taking lessons from counselors and facilitators in the room who offered views of the hard topics as invitations and possibilities. We might best meet those possibilities when we practice non-judgment, and when we stay with discomfort while noticing, making space for, and engaging with these hard topics.
“We don’t really know how to be in a conversation where these are the topics. We haven’t been trained for that. I’ve been really well trained to have a response, to bring something witty to the conversation, to summarize, but I have not been trained to hold space for something and not have an answer. Or to just listen, and trust that listening is enough.”
- Workshop Participant
Then came the stories. Hanna shared her personal story of the challenges of learning to love it all — her years in an abusive relationship, rediscovering her own humanity after growing up in one of the most racist countries in the world, and reckoning with the fact that she expected to live to be 90 until ALS gave her just a few more years at age 47. She questioned herself—and us—about how we can find ways to love the things on both lists. How might we benefit from learning to love the experiences on both the light and shadow sides, because it’s what we have been given?
When I looked at the poster, I made a list of everything I have experienced on the shadow side. I am an addict to numbing. I had a miscarriage. So many things in that list are my life. I am the shadow side of the paper, and I’m dying. My choice is to learn to love them as much as the others. Because I’ve been given both.
My question is, how do I and we enlarge ourselves enough so we can welcome all of the human experience and bring that into belonging, and love each other as well?
Another workshop participant, Erika, shared her shadow story with the group.
My shadow story is about my post-mastectomy self. Feeling like a freak in society and having to carry the literal weight of a prosthetic. Having discomfort and pain in order to feel like I’m accepted by society and not feel like one big freak.
The gift of the pandemic was that I literally shed it and I never put it back on. But the fear of what it would be like, especially professionally, standing in front of large groups of people as this one-boobed human that I’ve never seen in society. And I know there are quite a few of us. But none of us show up in the world. I’m supposed to be afraid, because why else would we all do this?
I was able to shift it into possibility of how might I use my authentic self in the world. And actually show up with integrity — because I felt like I was lying! I was showing up in spaces where the work was to stretch who we can be in the world, to be our full authentic selves.
So I felt it was necessary to actually show up as my full authentic self, in integrity, to do the work. Because if I’m asking people to imagine the possibility of pushing back on society about who we get to be in the world based on what and who decides it really requires me to do just that.
-Erika, workshop contributor and Okay Then Collaborator
These stories were provocations—making the ideas of bringing the shadow into the light tangible, and helping us to think about how to put what we’d been talking about into practice. When reflecting on the purpose of the story-sharing part of the workshop. Marc expressed their power to spark action and possibility.
When you have lived all your life in the separation of light and shadow that we described at the beginning of the session, it’s hard to imagine what it might be like to turn and start to reintegrate. So we hoped these stories might signal some possibility — open people to a territory larger than what they are used to considering.
Our desire was to bring some story into the room about how we feel unable or afraid to look at this shadow side (much less bring it up with others). But then finding a different relationship with it. Stories about what happened in a way that might suggest that there is a forest of possibility if we can learn to bring this into our consciousness, conversation, and work.
In our final discussion, we talked about design practice and how, at the very least, we might suspend our fear and foster curiosity about how to bring the shadow topics into the light. We were invited to reflect on who benefits from these experiences being kept in darkness, and from the resulting feeling that we must struggle alone. We talked about how naming and openly discussing these challenges might initially feel destabilizing and more than a bit scary. Recovery and re-stabilization would require a lot of work, but might take us to a place that is more resilient and more equitable — and ultimately stronger.
Near the end of the conversation, Hanna shared with us the Zulu word “Ubuntu,” which is sometimes translated as “I am because we are.” It encourages “humanity towards others,” and a willingness to get started working on something, even where you can’t necessarily reap the fruit or reward.
Hanna and her collaborators are working on publishing her writing in the form of six or seven books that Marc said “need to be in the world,” touching on topics of grief and gratitude. They’re also launching okaythen.net, a participatory production company to share the voices and work of those who groups who are doing work in emergence and uncertainty. We left thinking about our own practice, and things we can do differently to start holding space for these topics in our work, even if we can’t quite yet understand what will come of it. We hope that many will bring these tools into their projects and practice, and that we can collectively get started working on the opportunities for connection and wonder that live in the shadow topics.
As we wrote up this summary, Marc shared a story of some of their work at Fit Associates that resonated with us as a beautiful and pracitcal application of how bringing the shadow side into the light could deepen and bolster the design work we do with clients. We see again and again how easy it is to “other” people, and to condemn their actions and behaviors without understanding the origins. At its best, design research allows us to try on other people’s eyeballs and catch glimpses of the world from their perspective. This case study got us excited about the possibilities, and we wanted to share it here. You can listen to a more detailed summary of the work on the Fit site.
Hanna and I were invited to work with part of a national nonprofit. They operated like an ad agency, trying to influence and educate people so there would be less cruelty to urban wildlife. It wasn’t working. The numbers didn’t change, nor did the stories.
In the first couple of phone conversations, it became clear that they were, as Hanna sometimes says, “facing away to be okay.” They weren’t talking to people who were mean to animals. They weren’t listening to them. It was more comfortable and more true to their training to operate from stories that said things like, “We’ll provide education. Once they realize, they’ll change.” And looking at some of their posters I think they must have also had a story about the power of shame.
We did some practice with them in listening without judgment. And then we brought mean-to-animals people into the same room with them. They heard their stories, from the time those people were children. They opened, and they listened. The opposite of facing away.
By the end of the day, they had sketched language for a new creative intent, informed by the pain and trauma and long-term conditioning they had heard in those stories. I’m telling you this as a design story. What is the source of your work? If we turn away from heartbreak and death, the source of our creative efforts is de-souled. It is shallow.
My point for both stories is the same. It is possible to have a relationship with loss, heartbreak, and even death other than the one that’s usually modeled for us. It is possible to have a relationship with these things that’s different than “face away to be okay.”