Find your people

Look Beyond Face Value: Moebius Syndrome Awareness DayLongtime 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 milk. Doctors advised his parents to put him in an institution and forget about him. Continue reading

Weekend update

Last Saturday I posted a round-up of what caught my eye during the week and my friend Andre Blackman (@mindofandre) created this awesome graphic:

Susannah Fox's Weekend Update - credit: Andre BlackmanThus encouraged, here’s another round of what I favorited on Twitter this week:

Nancy Stein (@SeniorityMatter) shared an opinion piece by Rob Lowe about long-term care planning. He’s promoting his partnership with a financial services company, but it’s a good article. I wonder what effect a celebrity can have on this topic. For some, the financial frame might be a good hook. For others, an appeal to intergenerational responsibility might focus the mind: “Take care of Mom the way she took care of you.” We sure need something to break through the denial wall. Continue reading

What I’m reading, listening to, admiring…

Susannah at the library

I hunkered down at the library this week, working on a couple of long-term projects.

I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:

Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.

Pew Internet: Social Media Site Usage 2014 — 81% of U.S. adults use the internet and, of those, 71% use Facebook, which is really pretty astounding (and is an opportunity for health intervention and support). Continue reading

Let yourself in on your own secrets

I respect secrets. When my grandmother died at age 96 and a half, her final words were: “Erase my email.” Why? I don’t need to know. And she is not someone you want to cross (present tense — her spirit is still here with me, urging me to live a big life.)

But I am also a voyeur. So I visit PostSecret and greedily drink each one, like I’m doing shots of other people’s truth.

The only difference between our secrets is whether we allow them to evolve into tales of heroism or fear.

PostSecret’s creator, Frank Warren, opened a door for people to creatively reveal themselves to, essentially, themselves. And, when everyone rushed in to share, he let us all in on the biggest secret: we are all imperfect, we are all human. Continue reading

Imagining better outcomes for T1D with #MakeHealth

This post originally appeared on Diabetes Mine.

Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.

I will leave the official accounts of the event to the hosts, the C3N Project and T1D Exchange. But I can share a few vignettes. Continue reading

Public Q&A: How do you know when you are heading in the right – or wrong – direction?

Here’s a question I received recently: What kinds of indicators tell you if you are going in the right — or wrong — direction in your work?

I decided to answer it here, as a public Q&A, because it merits crowd-sourcing. Continue reading

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 visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair). Continue reading