I’m very happy to report that the audio version of my book, Rebel Health, is now available from Libro.fm, Chirp, and Audiobooks.com. It is narrated by Kim Niemi, whose voice has been described as “soothing, soulful, and powerful.” I love the samples the publisher chose (click on the links above to play them). Here’s the […]
Moebius Syndrome
Wow! How? Moebius Syndrome
There are seven universal facial expressions, understood across all cultures: happiness, surprise, contempt, sadness, anger, disgust, fear. Someone’s ability to recognize – and use – those expressions helps them navigate in the world. Historically, people with expressive faces – a big grin, for example – were perceived as happier than those who did not smile […]
Rare but not alone
Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]
Find your people
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 […]
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 […]
Recent Comments