Reblogged from Health Design By Us
Make Health: Personal Genomics Hero Story http://www.slideshare.net/perplexity/make-health-personal-genomics-hero-story
I was given the honor of closing remarks at the We Make Health Fest, and was pretty nervous about it frankly. I was supposed to do something on personal genomics along with the closing remarks. The very idea made me feel dizzy. I thought about it a lot for weeks without having any ideas I felt good about. One of the ideas was to make the whole thing a poem. Then I thought haiku for each section of the talk. Then I started outlining the talk and realized it sounded kind of like the Joseph Campbell’s hero’s journey, the whole Hero With a Thousand Faces idea. Last summer I was also taking the Coursera MOOC on Fantasy and Science Fiction in which we talked a lot about Propp’s functions of folktales. With all that, I got the idea to tell about personal genomics in my life as a kind of folk tale, and to talk about that experience as a representative process. That was the idea that struck roughly 24 hours before the event started. Oh.
As it turned out, there were so MANY heroes at the We Make Health Fest. So many of them had stories that contained a heroic challenge, a guide, a journey, a transformation, a rescue or solution. This was true from the very first presentation, with Joyce Lee and her son, talking about how they used Youtube to help teach schools how to keep him safe, and how the family worked together to make a large cardboard person to explain their warnings signs. Jane Berliss-Vincent described how an iPad saved a man’s life when he’d given up the will to live. Gary Olthoff made a device that was born out of long visits at hospital bedsides and seeing how nurses struggled with the mattresses. Duane Mackey overcame challenge after challenge in an engrossing story of the process that has culminated in his Open Source Mosquito Trap. The long journey to the stair-climbing wheelchair started young, in early school years, and became a mission. Mike Lee talked about how open teaching and learning resources can change lives in 3rd world countries. Marc Stephens literally transformed his own body through the use quantified self and wearable technology (and more!). Michael Flynn practically juggled the skateboard he was waving around, advocating for new opportunities for physical activities, while the McNaughton-Younger team brought their kids up on stage to help teach challenging concepts of diagnostic tools in surprisingly simple ways. Lia Min told a powerful story of being lost in a grocery story when young, and how sensory challenges can make that a much more confusing and frightening experience, then turning the story and the understanding into a tale for others, through her comic book.
Of course, our keynote speakers were both incredible, and heroes in their own right. Jose Gomez-Marquez explained how medical devices from first world countries fail in 3rd world countries, hidden costs with hidden agendas, and how simple tools and strategies can empower us all. John Costik really reached out and touched the hearts of the audience with his story of his child’s diagnosis with diabetes, how this radically changed their lives, the appearance of experts and guides who helped him along the road to creating the tools that are helping them all feel safer, and being used by so many others.
It wasn’t just the speakers who were heroes! In the exhibit hall, I was so thrilled to see people from e-NABLE with example Robohands, the open source prosthetic for those who may not be able to afford one. Other 3D printing experts at the event included All Hands Active, Maker Works, and the UM 3D Lab. Brian Zikmund-Fisher demonstrated tools that help people make sense of those confusing and mysterious numbers in research to help people make informed decisions through real understanding. Nanci Nanney lobbied for safe kitchens and restaurants for those with food allergies. Solus created a solution to help people with missing limbs be both more mobile and more comfortable.
That is just a small, very small, sampling of the heroes who were helping to make health, and who we were privileged to have at our inaugural We #MakeHealth Fest. Over coming weeks we will gradually bring out some of the videos (but it might take a while!). We will try to tell more of the stories, and introduce more of the people. If you were there, think about sharing a blogpost or tweet about what meant the most to you from the We #MakeHealth Fest.