Why I won't "try on" disability to build empathy (and you should think twice about it.)

Portland-area folks: we're offering a one-day accessibility workshop in conjunction with our friends at Portland Underground Graduate School on May 6. We'll spend time thinking critically about different embodied experiences, and then get techy diving into the newly-updated 508 standards. Because accessibility isn't just something interesting to think about- it's a the law!

 Dr. Michelle Nario-Redmond in low-vision simulation googles (Photo: Hiram College)

Dr. Michelle Nario-Redmond in low-vision simulation googles (Photo: Hiram College)

When we talk about usability, or accessibility, one word that’s bound to come up is “empathy”. What is empathy, exactly, and how do you get it? Defined as “the ability to understand and share the feelings of another”, empathy is more complex than it sounds. 

As Leslie Jamison writes, “Empathy comes from the Greek empatheia - em (into) and pathos (feeling) - a penetration, a kind of travel. It suggests you enter another person's pain as you'd enter another country, through immigration and customs, border crossing by way of query: What grows where you are? What are the laws? What animals graze there?

Can you step into someone else's pathos momentarily and easily? Some folks think so, but I’m not so sure. Is there a better way to approach this?

Perhaps the most popular method of invoking empathy for accessibility issues is simulation, meaning to “try on” different constraints of disabled folks. This is practiced often in groups - working groups, or professional workshops. One common activity is to submerging one’s hands in icewater to simulate motor impairment. A local bureaucrat I know told me that he’d organized a group outing for his team in borrowed wheelchairs, where the otherwise able-bodied crew wheeled around the downtown area, with the intention of becoming more aware of ramps, curb cuts and accessibility infrastructure. 

Previously, I’d thought these exercises were a good way to get people engaged. But the longer I do this work, the more reluctant I am to do things like these. They feel short-sighted and showy, and don’t engage the real people who navigate the world with differing abilities.  There’s a term you hear in hip hop: “stuntin’”. These activities seem like stunts, that allow us to feel like we’ve broadened our perspective, making a big deal about it, and then go back to business as usual. 

I’m not alone in being troubled by simulation-as-empathy building. In fact, there’s a growing body of evidence to suggest that this sort of exercise can undermine the intended outcome. One recent paper, Crip for a Day: The Unintended Negative Consequences of Disability Simulations, published by the American Psychological Association's journal, Rehabilitation Psychology (March 2017), found that "disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities." 

The research team found that “mimicking the effects of a disability for only a few minutes fails to account for the diverse coping mechanisms and innovative techniques persons with disabilities develop in long-term situations. Thus, momentarily experiencing the challenges a disability may create could cause participants to underestimate the true capabilities of persons with disabilities”. 

So what do we do instead? Dr. Michele Nario-Redmond, lead author of the study, suggests that we build equitable human relationships with folks with differing abilities and disabilities. "For those who are curious about disability issues, take the time to visit with real people [with disabilities] and lots of them. Get to know their diverse interests and accessibility concerns and ask how you can be an ally for disability rights.”

 

This can start with you, and the people around you. I learned less from soaking my hands in ice water than from talking to my mom.  She has chronic arthritis, and it’s through talking with her that I’ve learned more about the day-to-day adaptations one has to make in the context of an otherwise rich, full life. (I should also note that my mother is left-handed, so I’ve watched her point out barriers to accessibility for southpaws for decades.) 

We can also think about accessibility in terms of diversity in experience: while I have friends and family members who use wheelchairs and other mobility devices, I became acutely aware of ramps, curb cuts, and the accessibility of infrastructure when I had my own daughter and used a stroller to take her around with me (and often, to put her to sleep!). Now, as a daily cyclist, I have another perspective on ramps and curb cuts.

There's a powerful illustration here: The ramp outside of our local public library makes the building more easily accessible to those using wheelchairs, but also to the parent with the sleeping baby, the cyclist, or the delivery driver with a dolly full of packages.  

We all have people in our lives whose bodies are remarkably different from ours. And it’s through living and critically engaging with diverse groups of people that we’re best able to cultivate empathy generally and constantly, not just selectively and discretely, and to design inclusive solutions that will work better for us all.