Radical Immersion for Extreme Empathy

Reflections on empathy from Julia Benini, a Design Director IDEO.org

After a long drive by corn fields and brick factories, our van approached the gates of a private health center. We walked passed the well-trimmed garden and a community gathering space. At the comfortable shade of the clinic’s porch, our hosts awaited us with a welcoming grin.

We were in Western Kenya, prototyping a new program that aimed at increasing adolescents’ access to birth control. There, the toll of teenage deaths due to unsafe abortions is high, despite fairly progressive health policies that make it easier for teens to get contraception. Due to lack of information and common myths, girls told us they feared their family, friends, and even their boyfriends could turn against them if they adopted a contraceptive method.

One of our goals was to learn if we could circumvent community judgement and reach out directly to girls if we safeguarded their privacy. It was a bold idea. Prototyping is our opportunity to experiment with how far we can push the status quo while maintaining our ethical commitment with communities, knowing that some ideas will work and others will die out before the actual solution comes to life.

Our hosts took us through the end of a narrow outdoors corridor finishing in the building’s rear gate. At the last door to the left, they pulled the keychain to open a room filled with paper files consumed by the merciless humidity. The rear gate gave the room discreet access, just as we had asked for. We hoped discretion could give girls the confidence they needed to come in without being seen — and judged — by others.

We spent an afternoon transforming the room and training the staff. Before the sun set, we had brought to life the first prototype of a girls-only clinic, one of a series we created that week. As we prepared to exit, I returned for a moment to photograph the wholly transformed room. I paused and wondered, “Would a 17-year-old version of me come here for birth control?”

I thought about the potential consequences of such a private experience. Birth control side effects, for instance, are more persistent amongst teens and not always easy to hide. They could include cramps, abnormal bleeding, changes in mood and complexion. If I experienced side effects after returning home, would I remember the nurse’s counseling and know what to do? Would I contact the clinic for support? Who would I reach out for help? These questions followed me for the duration of my flight back to San Francisco.

That was my first project in the reproductive health space, and I was knee deep in birth control information. I became curious about how long-term contraceptive methods could work for me, and I had been considering an IUD. In that flight, half way through the Atlantic, I decided it was time to get one.

An IUD, or intrauterine device, is a highly-effective, long-term birth control method inserted by a trained healthcare professional in a medical facility. I chose a women’s clinic in San Francisco and made an appointment to get the IUD a week prior to my next trip, this time to Ethiopia.

I waited for the midwife in a tiny exam room, the smell of hydrogen peroxide reminding me of my irrational fear of blood. I signed the paperwork, and the procedure begun. After fifteen minutes of agony that felt like hours, the midwife decided to call a doctor. At the twenty-minute mark I passed out. “You got a fancy uterus, lady!” a nonchalant nurse told me as I woke up.

I got home exhausted and scared. I called my mom back in Brazil. A sympathizing friend brought me soup. If at age 33, I fainted and called mom, the seventeen-year-old version of me would have been in big trouble.

I travelled to Ethiopia experiencing nearly all the side effects a woman can possibly expect from an IUD insertion, and they persisted through the trip. I struggled in silence for most of it, confiding a censored version of the toughest moments to my team member and friend Cady.

Why didn’t I seek help? Looking back, I didn’t want to come across as a damsel in distress, and the idea of paying a gynecological visit in rural Ethiopia terrified me. The independent, confident explorer my friends know me to be was paralyzed by shame and fear.

Shortly after returning to America, an impromptu visit to the ER put an end to the most personal immersion experiment of my ten years of work as a design researcher.

Immersion is a design research method that stems from participatory ethnography. During an immersion exercise, we put ourselves in the shoes of the people with and for whom we’re designing. We try out how it feels to perform tasks or experience situations just like they would. Being in our users’ shoes is particularly important when designing for an activity that is new to us or a socio-cultural context that is very different from our own.

Immersions can provide a depth of empathy for our users’ experience like no other design research method. Building deep empathy is what makes us shun solutions that are good enough and imagine solutions we are proud to use ourselves. When we design for some of the most vulnerable communities in the world, good enough is never enough; it’s condescending, lazy, and colonialist.

My own experience getting an IUD helped me empathize with some of the stories that emerged from our prototyping experiments in Kenya: stories of girls with side effects not reaching back out to the clinic; stories of girls scolded after confiding their experience to an adult they trusted. I realized some of them were as ashamed and scared as I was. And yet, the program we designed was helping them build confidence and be in control of their reproductive choices. They just needed more support.

It worked. A year into the pilot, the number of 15–19 year-old girls getting birth control increased sevenfold. And a year into my IUD expulsion, I was diagnosed with fibroid. I learned my fancy uterus was actually just sick. After a successful surgery, I got another IUD. And this time — with a healthy uterus — I experienced almost no side effects. And let me tell you: I love my IUD.

When we practice an immersion, we must be ready to blur the boundaries between work and life, within the limits of our own comfort zones.Immersions remind us that it’s the ethical responsibility of every one of us, designers or not, to deeply understand our impact on the lives of those touched by our work. Mine is to help young women around the world protect their birthright to a bright future.

Sharing my medical history on the internet was no easy decision. In a time when the sovereignty of millions of women’s bodies is at risk, speaking openly in the name of empathy is critical. And there has never been a better time to exercise empathy than right now.

This article originally appeared on Notes from the Edge of Design.