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March 16, 2010 10:00 PM   Subscribe

Reggie Bibbs has neurofibromatosis, and he has made it his life's mission to educate people about the disfiguring disease. Besides going to lots of big public events, he's got a Facebook page, a Flickr site, a Myspace page, and a YouTube channel, and he founded a nonprofit to help raise awareness of NF.
posted by yiftach (12 comments total) 4 users marked this as a favorite

 
Here's an interview with Reggie on Wikinews, and his self-written bio on his website (freed from the frame on the main site), which goes into some detail about his often difficult childhood.
posted by yiftach at 10:05 PM on March 16, 2010


Am I the only one who expected to see one of the MeFi mods in a shirt that said "Just Ask! (MetaFilter)"?
posted by ColdChef at 10:08 PM on March 16, 2010


Cool dude. He has a great attitude. His writing is also very good.
posted by smoke at 12:03 AM on March 17, 2010


What physically fragile creatures we are. The "disfiguring disease" Wikipedia link states:
Joseph Merrick, the Elephant Man, was once considered to have been affected with either elephantiasis or neurofibromatosis type I. However, it is now generally believed that Merrick suffered from the very rare Proteus syndrome. This however has given rise to the common misconception that Neurofibromatosis and "Elephant Man Disease" are one and the same.
The film was directed by David Lynch after being persuaded to do it by producer Mel Brooks, who said:
It was a problem: how does a guy who is known for the best fart jokes in cinema go on to make The Elephant Man? I had all along the line assiduously kept my name from the project. But after this one conversation, David knew I had more to me.

I guess it was the outsider aspect that appealed to him. And that's where I think we met, mentally. My films, even if they're comic, they're about: 'Let's accept the bizarre. Let's learn more about these creatures, or these Jews.' I know the Elephant Man wasn't Jewish, but, to me, the story had all the aspects of anti-semitism and [Joseph] Merrick had all the traits of the classic wandering Jew.
If only our bodies were as unyielding as our minds.
posted by cenoxo at 5:33 AM on March 17, 2010 [1 favorite]


I totally saw Reggie and company walking around Capitol Hill in February.
posted by MrMoonPie at 5:41 AM on March 17, 2010


Yah, MrMoonPie, I saw him up there too. I was working up on the House side, and I was eating lunch between meetings when I saw him. It took me a bit to get past the spectacle of him, but being the seasoned Hill rat that I was at that point, I soon saw that he was the leader of the group he was walking around with--he was absorbed by his phone call like any other lobbyist, and my surprise at his appearance faded quickly. He was just part of the crowd, a dedicated American coming to the halls of Congress to make his case.

Spend a few days on the House side of the Hill once in your life. It is a front-row seat to the incredible human menagerie that is the United States of America.
posted by oneironaut at 6:16 AM on March 17, 2010


He seems like a wonderful man.
posted by Mister_A at 8:01 AM on March 17, 2010


His face reminds me very much of the headshot of a columnist for one of the smaller newspapers in Illinois; I wonder if that's what she has.
posted by Halloween Jack at 9:00 AM on March 17, 2010


Awesome. What courage. Thanks.
posted by ottereroticist at 9:33 AM on March 17, 2010


I wonder if there is a neurological explanation for why watching someone with a deformity is, at first, kind of unsettling. Are we wired to expect a kind of regularity in human variation? Does it have something to do with how unexpected it is? Is it a form of negative empathy?

Props to Mr. Bibbs for not letting his condition limit him.
posted by Omon Ra at 9:45 AM on March 17, 2010


omonra, there's a book called "The Tyranny of the Normal" that I've been meaning to read that addresses that very interesting question.
posted by memewit at 12:27 PM on March 17, 2010


My best friend in kindergarten had an operation which scarred her finger, and my mother took me aside and said my friend had a serious disease, and I should never talk about it. My mother so impressed me that for the last 40 years, I never asked my friend about it. I finally realized that this was ridiculous, and asked her. Turns out she has neurofibromatosis. I told her I had been donating money for NF for the last 20 years.
posted by acrasis at 3:40 PM on March 17, 2010


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