We seek to re-center the ways in which time and infrastructure interact, to illuminate the texture of this web so crisscrossed with great divides that in literature and popular myth, the whole borderland has taken on a phantasmagoric shape, unrecognizable to those undergoing the experience.”
Bowker and Star, “Of Lungs and Lungers: The Classified Story of Tuberculosis”
Some services we use by choice, others by circumstance.
It was nearing 10 p.m. on a Tuesday night in July when my cell phone rang. The caller ID showed the name of the summer camp my kids were away at. It didn’t take more than a second to register: this is not good news.
It wasn’t. My child had sustained an injury while playing an evening game of capture the flag. Camp counselors were recommending a visit to the local hospital emergency department.
So began my summer healthcare service journey, as a parent of an injured child.
Two months into the journey, I’ve had some time to reflect and consider how these things go. I’ve been a participant in a service, rather than a designer of one.
I’m someone responsible for producing abstracted representations of service experiences. Along with my colleagues at OXD, I imagine the journeys of others, and then bring those journeys to life through design. Yet I now find myself with the service shoe on the other foot. I’m struck by the surfeit of lived experience that goes unspoken or unknown. I question the unillustrated and unexplored aspects of my own design work.
My child’s injury was serious enough to require surgery within one month of his injury. It put him on crutches for six weeks. His long-term prognosis is four to six months until he returns to his active teenage life, full of training and high level competition in the sports he loves. On a personal Richter scale of teenage life events, it felt like a significant quake.
It’s not the summer he hoped for. Nor was it the summer we, his family, hoped for. But it was the summer we got. It was a summer that taught us different skills, shifted perspectives, and made us appreciate things in new ways.
The smattering of impressions I’m sharing here is an attempt to draw out my learning so far, elicit some ideas that I hope one day will have an impact on how I design. I feel compelled to write them down because I fear they will evaporate as time passes. I’ll forget, purposefully or not, how it felt to live through a service in a way you can't observe as a design researcher, only as a participant, subject to the designs of others.
Impression 1: Time gets weird when bad, surprising things happen.
Professionally, so much of what I do is organized around managing—dare I say controlling—time. Consider the temporal aspects of how agile digital teams work. We split our work into two week sprints. We estimate our effort in hours and days. We plot our progress and velocity through time. We plan long term futures through roadmaps. We mark the passage of time in quarters and years. Our service artifacts attempt to display time, running left to right. We demarcate time with vertical lines, labels for phases or stages.
Of course, my attempts to control and represent time are different than what happens when life unfolds in ways you weren’t expecting.
The minutes and hours immediately following that summer evening phone call felt much longer than what the clock read. Uncertainty, fuelled by gaps in physical distance and information, created a void. I filled it with a great deal of what-ifs and worrisome scenarios. Present time dragged as I imagined and dreaded multiple future times.
And yet, time does pass. Evening comes, sleep (sorta) follows, and the day moves on. Uncertainty is mitigated by information, leading to further uncertainty, different what-ifs. Eventually, our child returns home on crutches and further action is required. The service of “get better” or “seek answers” or “get treatment” is now the focus.
The true nature of the healthcare service experience is revealed: it’s a lot of waiting.
Impression 2: The moments of truth of the service are dense and fleeting, the rest is waiting.
- Waiting to hear back from a GP.
- Waiting to hear back on an MRI.
- Waiting for confirmation of a referral.
- Waiting for a follow-up appointment.
- Waiting in waiting rooms.
- Waiting for surgery.
- Waiting for the anesthesiologist.
- Waiting for your child to wake up.
- Waiting in traffic on the drive home.
- Waiting to see what happens when the drugs wear off.
- Waiting for the next alarm to go off to remind you to follow the pain management plan.
- Waiting for the first week to pass.
- Waiting for the post-op follow-up assessment.
- Waiting for when things might return to normal again.
I’m fond of saying that the defining nature of services is the passage of time. I’m even fonder of sharing Maister's trusty essay on the psychology of waiting. Yet as I now wait, I notice how the experience elicits more phenomenology than psychology.
Impression 3: The passage and explicit demarcation of time is entangled with how we structure our identity (e.g., me before the event, me after the event; me before the service, me after the service).
During the early days of COVID, Andrea Siodmok (RMIT, UK Gov Policy Lab, UK Design Council) shared a candid and courageous personal sketch of her journey with COVID. In her diagram, she described the passage of time in relation to how she experienced her illness.
This image made me think of Star and Bowker’s writings and images captured in their book Sorting Things Out and essay “Of Lungs and Lungers: The Classified Story of Tuberculosis.”
While writing about the experience of a long-term chronic illness (not simply an acute event followed by a period of recovery and rehab), Star and Bowker “weave together problems in biography, the body, and the cultural and organizational meanings of the disease [tuberculosis]. Time meets infrastructure; experience meets classification.”
I will not try to summarize all of their writing, rather recommend you take 40 minutes to read their essay as a starting point. If you are a designer and haven’t read Sorting Things Out, I strongly encourage you to find a copy and invest some more time.
Don't get me wrong—my child is not experiencing TB or long COVID. Yet the language and concepts presented felt so relevant in this moment, in particular, the idea of the body-biography trajectory (Corbin and Strauss).
A model developed by Juliet Corbin and Anselm Strauss describes what happens in the course of a chronic illness (1988, 1991). They posit that bodies and biographies unfold along two intertwined trajectories (the ‘body-biography chain’), nestled in a matrix of other structural and interactional conditions (Strauss, 1993). For example, a heart attack may temporarily interrupt work, home life, creativity, dragging ‘down’ the trajectory of biography—of course, this in turn is contingent on a number of other circumstances such as having access to health care, living in a war zone, having another illness which makes recovery longer. The chain can be viewed geometrically, as a topography emerging from the interplays of these factors.”
Geoffrey C. Bowker, Susan Leigh Star
This model does not seek a Cartesian ‘mind-body’ dualism, but rather to find a language for the ways in which two (or more) different processes become inextricably intertwined into one thick chain or braid. It makes the sick-well, able-disabled dichotomies, and brings in people’s active conversations with and work with their ill bodies as a central concern.”
Geoffrey C. Bowker, Susan Leigh Star
In the midst of the torquing of my child’s body-biography trajectories, I find myself wondering about his recovery, his return to sport, and his adolescent identity. I wonder whether his solid and dotted lines will re-converge after their temporary displacement, or whether some new trajectories will emerge.
I, too, experienced a health event requiring acute care, hitting the ground at 60 km/h while racing my bike on Vancouver Island’s twisting coastal roads. Perhaps it’s the reflection of my before and after, my departure from a previously imagined future biography, my pre-accident aspirations and post-accident choices that still linger as I watch my child on crutches, trying to navigate the stairs in our home.
I catch myself: my past is not his future. Parenting is a constant reminder of this.
Impression 4: Any representation of a service user will forever be an oversimplification and flawed; proceed with caution.
Body-biography trajectories challenge an already contentious design idea: that we can create fixed, stable, and knowable abstractions of the human beings for whom we’re designing.
We assume that the motivations, attitudes, and beliefs of the pre-service and post-service human are somehow constant, their actions predictable throughout the journey. These simplifications appear naive and foolish set against moments like this. The event and corresponding service(s) may very well be the catalyst for new identities, new biographical trajectories. The experience creates the conditions for change. The event may result in new beliefs and attitudes and behaviours.
I can’t help consider the mandatory dynamic of the public services we work on, the design context we so often find ourselves in. By providing something of value to the consumer of a service, to enable them to achieve something meaningful, how can we not alter their identity? The logic of service and the intent of the design seems centred on this very idea for it to work.
The gravity of that implication doesn’t seem reflected in how we really talk about the impact of services. Instead, we gloss over the force that services can bring to the biographical trajectories of those on the other side of the counter or the screen.
Impression 5: Care is a process and also a matter of time.
Of course, it’s not all waiting.
That feels far too passive to describe what’s really going on.
There’s a lot of care.
- Physical assistance.
- Cleaning up.
- Feeding.
- Reading.
- Joking around.
- Asking questions.
- Listening.
- Playing video games.
- Answering questions.
- Being together.
Cat Swetel’s tweets from Anne Marie Mol’s book The Logic of Care pop into my head. I re-read them. I pull the book from my office shelf and thumb through it. I reflect on the dynamics of institutional care models and personal care giving, the criss-crossing of public and private in our service experience.
Care is a process: it does not have clear boundaries. It is open-ended… it does not mean the care process is larger than the devices and activities that are a part of it. Instead, it is a matter of time.”
“…for care is not a (small or large) product that changes hands, but a matter of various hands working together (over time) towards a result. Care is not a transaction in which something is exchanged; but an interaction in which action goes back and forth (in an ongoing process).”
Annemarie Mol
I wonder how I can do justice to the idea of care in my work.
~
Another Friday arrives, another milestone recognized.
We shape time with recognition of small but meaningful achievements. We draw our own metaphorical straight lines on an imagined journey map. We attempt to carve up and make legible the summer that was and the fall that is yet to be. Trajectories appear to be heading in a favourable direction. I’m deeply thankful for that.
I’m also thankful for our healthcare system. I’m grateful for the professionals who make this their job day in and day out, people who do think about how services are provided and experienced. People who were full of subtle and powerful gestures of care in how they engage with injured children and their parents and caregivers.
And I am in awe of how resilient and courageous my child has been.
I’m renewed and exhausted by the experience. I can only hope that when I find myself working with clients, staff, and the people who experience services every day, on design problems in the future, I am able to remember these impressions.
I hope to remind myself: avoid simplifying things, beware of taking shortcuts.
Instead, I will pause, listen, and respect those who are living their biographies, their identities changing in ways only known to them as they grapple with what life throws their way.