Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day: When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get […]
Moebius Syndrome
Public Q&A: Alternatives to Facebook and YouTube?
Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis). She emailed me with a very intriguing question, so I’m sharing it here for discussion: Moebius Syndrome is a highly […]
Hacking home health care
We need to fix the “solved problems” crisis in home health care. Let me explain. At the start of Health Foo* in December, everyone introduced themselves in 6 words or less. Row by row, person by person, 100+ people talked in turn. In the back row, nearly the last to speak, Laura Baldwin stood and […]
On the internet, the expression of your spirit has nothing to do with the expression on your face.
– the line I added to my speech on the train up to Philadelphia last Saturday. I wanted to convey to the people attending the 2012 Moebius Syndrome Conference that I admire them and see them as pioneers of peer-to-peer health care. My full post is on e-patients.net: Health Care Hackers
“There are 3 types of people…”
“People who think that people with disabilities can’t do anything, that we’re fragile and in need. People who think we are inspirational and think we can fly to the moon if we wanted to. People who treat us like everyone else, who know that we’ll ask for help if we need it but otherwise we’re […]
The impact of the internet on one man’s life
Nell Minow is a movie critic and corporate governance watchdog (yep, both). She and I were seated together at a luncheon a few weeks ago, part of a weekend-long meeting on leadership. We had just watched the movie, Act of Valor, and began talking about different kinds of leaders and heroes — those who seek […]
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