Published on | Prototyping: From UX to Front End — Medium Double Days

How I learned the difference between ‘lived’ and ‘simulated’ experience.

Up until I was 29, I lived a life of pretty good health. I wasn’t sporty so I rarely fell over, never broke a bone or caused an injury that needed a stitch. I went to school, made friends, took normal dumb risks and graduated without a much of a scratch. I lived overseas and studied. Twice. I moved flats and jobs every couple of years. By the time I was almost 30, I was mostly boring with moments of voluntary excitement and working as a design writer.

And that’s when my perspective was drastically altered.

A timeline of my life with (and without) a form of impairment, running from birth to today.

In August 2013, I was hit by a car while crossing a road. What came next is still a bit of a blur, but I was later told the first couple of days were touch-and-go. After that, surgeries. They pieced my hip back together and said I’d live, but walking was going to be an issue. My clearer memories start in a rehab facility, where I lived for the next four months with 24-hour care. I was taught to use a wheelchair, later moving onto crutches, then hobbling about in acute pain for the next six months as the last of the cartilage in my hip fell away, with each step a grinding of bone. A year later, I had a total hip replacement, and then another six months of physical rehabilitation.

The designer’s dilemma

I’m going to fast-forward a bit. I recently came across an old interview with Sir James Dyson. A edited quote:

“I once designed wheelchairs for disabled people. Which is a lovely thing to be doing. But the trouble is, I’m not a disabled person. So I didn’t know what they wanted…

…when designing fans and vacuum cleaners, I am able to make a judgement on the risks I am taking, whether I would buy it, and whether I would enjoy using it. I’m much more comfortable doing that type of thing.”

Sir James Dyson

It struck me that, perhaps unintentionally, he had articulated the human-centred designer’s dilemma. In the first paragraph, he rejects the idea of improving products for people that he cannot genuinely empathise with. In the second paragraph, he says that means he’ll stick to improving the problems people like him (those with able-bodies and cash to throw at domestic appliances) experience.

The dilemma is this: he rejects the idea of simulated experience being enough to design meaningful solutions. But that means only designing solutions for people who are the same as him. For many designers — myself included—the ideal is to design for those who need change, but lack the voice or toolkit to do so. So our process employs methods of achieving empathy. Problem is, empathy is nothing like lived experience: it’s a study, or simulation, of the alien nature of being someone else.

Lots of little lessons, and one big one.

If we take a closer look at that little blip on my timeline, it looks like this:

I learned a lot in those two and a half years. In hospital, I learned the frightening loss of control over my body—that doctors and nurses will prod and maneuver you, no matter what you say. I learned the limited-but-giddying freedom of the wheelchair: of throwing things in my lap and zooming around the halls of the facility. Outside, however, I learned that a crack in the pavement can prevent access to an entire side of a city block. I was heartened by the public who couldn’t offer help enough, filling those cracks that the council wouldn’t fix. I had to learn to walk again, theoretically and physically, rewiring what my brain had forgotten, a mind-bendingly tough mental task. I learned that there was always a seat for you on public transport when you were on crutches, but without an aid, stooping with hip pain at the sprightly age of 29 meant you were faced with having to ask someone to give up their seat for your invisible injury. I learned that strangers weren’t the only ones who forgot that you were injured, just because they couldn’t see it. Pain made me snappy and unkind. Being snappy and unkind made me sad. Relationships broke down and I felt I no longer had a personality I recognised.

It was difficult. But despite those lessons, when I comes to having insight into being impaired—whether it be chronic pain, disability, or being wheelchair-bound—I still regard my experience as simulated.

You live your experience. Your family may inherit some of it. Your support services may share a part of it. Others can only hope to simulate it.

It wasn’t real.

Throughout it all, difficult as it was to go through, I couldn’t avoid having a sense of novelty about it. I knew it wasn’t forever, so every challenge came with the belief that I’d be fine. It wasn’t for life.

I never had to start school with a disability, and not have a choice about what I could and couldn’t participate in. I never had to share my childhood with hours of physiotherapists and doctors and hospital appointments. I never had to navigate friends and boyfriends while also navigating a wheelchair. I never had to compromise on travel or taking risks, I never had to plan social outings around what train stations allowed wheelchair access, and I had the freedom to be dumb with the arrogance of bodily safety. It is these, and a million more subtle, invisible factors, that can only be understood as a single experience by the person who lives it.

Even after two and a half years, I had a simulated experience. All that time in the “context” of disability, I had only just begun to understand how much I didn’t know about impairment.

The dilemma

More and more literature is emerging from researchers who take issue with how designers employ and rely on empathy. Even when its deep and sustained, its a version of reality—and researchers have long known this. Research can only portray what the researcher is capable of understanding, but designers are not being taught the reflexive ability of placing themselves within their work. And so we are missing opportunities to make real change.

“While empathy certainly encourages us to be more aware of others in the design process, without reflexivity we are no more aware of ourselves — and that leaves out an integral part of social interaction.”

Anne Galloway

I am not saying empathy isn’t real, profound or valuable to the design process. I am saying we need to work together to define what a useful level of empathy looks and feels like, and what ecosystem of understanding it exists in. Above, Anne Galloway calls for a more reflexive attitude when designing. To acknowledge that the very existence of a researcher impacts the research, and it needs to be framed that way. Thomas Wendt suggests not just participatory design practices, but communal ones, are the way forward. John Payne wrote that we need a broader ecosystem of exposure and knowledge before we can claim any empathic understanding.

Wherever the future of design and empathy leads, I know that in my work, I need to remember that first and foremost that I will never truly understand anything that isn’t the lived experience of me.

Bonnie is a Melbourne-based design researcher and strategist, and co-founder of Double Days. This story was originally written for Design, Designing and The Designer: a workshop by Bonnie Abbott, as part of the Design Infidelity series.

The next workshop is at Vivid Ideas, in Sydney.

Designers: your empathy isn’t enough. was originally published in Prototyping: From UX to Front End on Medium, where people are continuing the conversation by highlighting and responding to this story.

Designers: your empathy isn’t enough.

Cool stuff, every week

More Articles