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

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

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 said, simply, “Dignity at the end of life.” I made a beeline to introduce myself. Continue reading

On the internet, the expression of your spirit has nothing to do with the expression on your face.

Quote

– 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…”

Quote

“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 fine.” — Kelsey, age 16.

For more about Kelsey, see: Facial Paralysis, Not Personality Paralysis (my latest post on e-patients.net)

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 the role, such as elected officials and Navy SEALs, and those who find it thrust upon them. I described my fieldwork with rare-disease patients and caregivers, placing them in the category of people who become heroic because of their life circumstances.

Nell immediately grasped what I meant and shared an amazing story, which she recounted again via email so I could publish it here:

My father’s older brother Burt was born in 1920, nine months after the wedding of his parents, both immigrants from Russia.  He was disabled and it was an era where the doctor’s only advice was to put him in a state home and forget about him.  But my grandmother had an indomitable spirit.  She took him home and then she forced the school system to take him, long before the Americans with Disabilities Act.  He graduated from college, worked in the family business, and was dearly loved by all of us for his witty poems and loyalty to underdogs of all kinds, especially the Chicago Cubs.  On the 60th anniversary of his bar mitzvah, at age 73, he did it all over again and we were there to cheer him on. Continue reading