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.
Uncle Burt’s symptoms included hearing loss and facial paralysis and very few people outside the family made the effort to communicate with him. People rely more than they realize on facial expressions for feedback. His particular disability was so rare that he never got an accurate diagnosis until he was in his 70’s, when for the first time we heard the term Moebius Syndrome.
This was in the mid 1980’s. I was online in the pre-WWW days, visiting bulletin boards and using pay services like Prodigy and The Source. It occurred to me that if Uncle Burt went online, for the first time in his life he could have relationships that were not limited by his disabilities. I was able to put him in touch with some of my friends and he communicated with some people who shared his affection for the soap opera, “Days of Our Lives.” And then, when the web first started, I tried out new search engines with arcane terms like “Moebius Syndrome” and one day, I got a hit. A family with a young daughter who had Moebius had started a web page. I emailed them and told them about Uncle Burt. They wrote back instantly asking me how old he was. The very limited medical literature of the time had no record of anyone with Moebius living past their 30’s. This family had located some 500 people with Moebius around the world and all of them heard for the first time that day that they could live a normal life span. And Uncle Burt heard for the first time that there were other people like him.
For the last year of his life, he was the elder statesman of a very small but very excited community and it would not have been possible without the web.