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

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