How do you take a Big Idea and transform it into something that impacts thousands? This was what we set out to examine at our Chicago Ideas Week event, “Building Community through Technology,” which we co-hosted with Facing Disability.
Facing Disability connects individuals with spinal cord injuries to information, resources, and others who have shared similar experiences. While the site targets a (fortunately) relatively small and specific group of people, the learnings that emerged while building it can be universally applied by any organization seeking to make an impact online. Here are four insights that helped guide the development of Facing Disability:
1. Know your audience.
You can’t create a helpful resource if you’re not absolutely clear about the problem you’re trying to solve. Facing Disability founder Thea Flaum wanted to build an online resource for the spinal cord injury community, but to get constructive answers, she had to ask the right questions. She drew on her 35 years of broadcast television experience to interview numerous patients, their families and friends, and doctors and other experts in the field. She asked tough questions about life after a spinal cord injury, addressing everything from the first days in the hospital, to thoughts of suicide, to sex.
Despite the potential emotional impact of these questions, Thea deliberately created a place with “virtually no tears.” Having helped her step-daughter manage a new spinal cord injury, Thea knew firsthand that there’s little value in watching people cry on camera. “The people who are on this website don’t need to hear about how bad it is," she maintains. "Emotion would diminish communication." As a result, Facing Disability users can watch videos, get information, and find shared experiences, all without conjuring up the emotional pain associated with the injury.
2. Remember that the Internet is an impatient medium.
Thea’s background may be in television, but she knew that the same rules don’t apply to fickle, multi-tasking online audiences. Most of the videos on the site are less than 60 seconds, so viewers can quickly cycle through multiple responses to the same question. But shorter content doesn’t mean shorter engagement: the average visitor on Facing Disability watches 4-5 videos on the site before leaving. We made it fast and easy for users to find what they want, while offering up relevant video suggestions along the way.
3. Create intuitive navigation.
The most compelling aspects of Facing Disability are its faces and the personal experiences that power it—these give users people and stories they can relate to. So in addition to organizing videos by topic, we worked with Thea on the concept of a “people filter,” which allows users to search by gender, age, and relationship to injury. These filters provide more intuitive navigation and the ability to discover relevant videos based on shared experiences.
4. Test your technology where your users will use it.
Almost every project encounters an "oops" moment, and this was ours—as Josh says, “It’s what you don’t know that you’re going to have to deal with at some point.” One month after Facing Disability’s launch, the International Spinal Cord Society and American Spinal Injury Association agreed to feature it at a major spinal cord injury conference in Washington, D.C. At the conclusion of the conference, delegates notified Thea that “the site was broken.” We knew it wasn’t, but while we’d implemented extensive testing before the launch, we hadn’t accounted for one thing: YouTube. It turns out that many hospitals and rehab institutions—the very places where recently injured individuals would be trying to access the site—block social media sites. The videos were hosted on YouTube, and while we could see them, those behind the firewall could not. Ultimately, we migrated all 1,000 videos to an alternate, paid video hosting platform to remedy the problem.
At the conclusion of our panel, Kris Cichowski, founder of the Life Center at the Rehabilitation Institute of Chicago, took the podium to explain the impact that Facing Disability has made in the community and how it’s been incorporated in the staff education program for “Patient Perspectives.” Thea is also partnering with RIC to develop a similar website for families facing traumatic brain injuries. And finally, Marca Bristo, president and CEO of Access Living, shared a very personal perspective on what the site has meant to her:
“When I broke my neck in 1977 I was in the rehab institute for four months. Now people are in and out in about three weeks...I had the chance to bond with other people who were in the hospital. I could meet other people who were coming in and out of the therapy for out-patient work. I had an organic way to see other people who had already made the transition and who had started to accept the whole situation. Today they’re in and out so quick, they don’t get that chance, and once you get home it’s pretty lonely. Being able to [find answers] in your own home, and at your own time, at night when you can’t sleep, when you’re sitting there thinking, ‘What am I going to do with my whole life?’ enables you to start to get outside of yourself, start to feel some hope, and then hopefully get on with your life.”
We’d like to say a special thanks to Facing Disability, Chicago Ideas Week, our hosts at Access Living, and the brave individuals who shared their experiences online, making Facing Disability the important resource it is today.
Below, watch some highlights from our panel. Thanks to our friends at Fresh Giants for filming the event.