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. Â 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. Â But my grandmother had an indomitable spirit. Â She took him home and then she forced the school system to take him, long before the Americans with Disabilities Act. Â 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. Â 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. Â I was online in the pre-WWW days, visiting bulletin boards and using pay services like Prodigy and The Source. Â 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. Â 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.” Â 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. Â A family with a young daughter who had Moebius had started a web page. Â I emailed them and told them about Uncle Burt. Â They wrote back instantly asking me how old he was. Â The very limited medical literature of the time had no record of anyone with Moebius living past their 30’s. Â 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. Â 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.
Oh, boy, THAT’s got me in tears.
Thank you so much. Oh, goodness, the potential of connecting the long tail of humanity.
It was an incredible story to hear first-hand and I just knew I had to share the goosebumps.
The IDEAS Salon, which hosted us for the movie screening and the weekend-long discussion, elicited amazing stories like Nell’s and other unexpected connections between people. As the luncheon discussion broadened to include the whole room, we talked about the heroism of the Navy SEALs in the film and the parallels we see in the heroism of their wives and families. The home front is as important as the battle front.
The hero for me in this story is Nell’s grandmother, the “indomitable spirit,” who refused to put her son “away” and instead created a situation that allowed him to thrive. Just amazing.
Susannah, creating situations to thrive is exactly what all of us must strive for in our own lives and the lives of those we touch. My hats off the the mother of “Uncle Burt” for refusing to give in to societal expectations. Today, the healthcare consumers (patient units) and healthcare professionals(Doctors, nurses and all) are called to do just that, stop giving in to the status quo. In my opinion an informed person is the best advocate for themselves and their loved ones, especially when it comes to receiving the best, competent and compassionate care that is our right.
Oh my. I can just imagine the eureka moment they all shared, and the experience of being in “the same room” with those 500 — if only for an instant. Sometimes you CAN hear a voice more clearly without seeing facial expression. Thank you for sharing.
The power of the Internet to build community and transform lives has been going on for a while. Thanks for sharing this poignant bit of history.
Goosebumps, yes. Thanks.
When my husband was diagnosed with von Hippel-Lindau disease he was told there were only 9 affected families in the world. You can imagine how that made him feel — like some strange bird that had descended from Mars, and that no one else could possibly understand what he was going through … 5 brain surgeries, 5 spinal surgeries, blind, then kidney cancer, paraplegia, and death at 35. Nine years later my son was diagnosed with VHL and I was determined to make his life turn out differently. With two other mothers I started the VHL Family Alliance in 1993, just months before the announcement that they had found the gene. Being in high tech I used technology to our advantage from the beginning — phone, fax, and paper mail, bulletin boards, desktop publishing, growing a database — and then in 1994 we put up a website and have grown it from there. Starting with three families in 1993, we are now in touch with more than 16,000 people with VHL in 108 countries! Just having that community has been a powerful help for me. And by comparing notes, working with our doctors and the researchers, we have worked out a strategy for maintaining health while we are waiting for a drug to help us. We have used the same strategy that has helped so much with breast and prostate cancer — early detection and appropriate treatment. My son is now 40, is blind, but has all his other faculties and a very good quality of life. None of us knows what tomorrow will bring, but we are stronger together, that’s for sure.
All best wishes,
Joyce
its a nice story. in the real life internet can build communication with others people.
An update:
I’m going up to Philadelphia tomorrow to join 410 attendees of the 10th annual Moebius Syndrome Conference, of whom 113 are living with Moebius. The invitation came as a result of this post and finding @MoebiusSyndrome on Twitter. I’ll present Pew Internet’s research about tech adoption and peer-to-peer health care. But even better, I’ll have the opportunity to learn from this amazing community of people who don’t need me to tell them about the social impact of the internet.