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After reading Steven Johnson’s wonderful essay on publicness, Mark Dery came to the conclusion that I should not talk about my cancer and my penis. I bring up Dery because I think that when we hear such disapproval of our publicness, we need to turn it around and look at what it says about the critic, not the criticized. This is what I said to Julia Allison when she tried to interview me but instead, I interviewed her on the topic of publicness during Internet Week.
The problem is that they see the internet in their own image as a medium they want to edit, package, and control.
Hate to tell you this, Mark, but I have another operation coming up this summer that I’ll mention here later. I know this isn’t the main point of your post, but I want to comment on the part where you mention writing the part of your book that mentions gays coming out of the closet.
You write, “when gays had to hide in the closet because their behavior was deemed unacceptable, that was a commentary not on their lives but on society. I agree that the Internet is about the conversation and that you can talk about whatever you want.
So this is my add … I think your rant here is quite similar to what you say Mark Dery is doing. I think your right that what he writes reveals more about him than you, just as what you write reveals more about you than him.
But he has no power over you beyond what you give him in acknowledging his writings about you, right?
Why don’t you go ahead and read him going after me at length and then conclude why I respond.
I am in the process of documenting the results of 13 years and over ?million spend on on-line collaboration. Jeff, you’re perfectly entitled to share every small detail of your self-obsessed life. Oh, yes, getting cancer and losing the functionality of my penis was entirely engineered to further my career. But here is what completely baffles me: What in the world about your publicness is so unsettling and threatening and invasive that it seems to have driven some of these people so crazy? The question is why, instead of just ignoring you, some people seem compelled to protest so much. This same (stupid) discussion happened when women began saying breast cancer breast cancer breast cancer breast cancer breast cancer. This same (stupid) discussion happened when women began saying uterine cancer uterine cancer uterine cancer uterine cancer uterine cancer.
One social comentator a few years back remarked that Americans would actually talk endlessly about their sex lives, but not about their bowels. Seriously though, you are adding to the ongoing review of the potential for social media to assist in health care. He also related his own brush with cancer and didn’t really like the results of making it public in a small way. That isn’t necessarily a bad thing but the danger that I percieve is that publicness might become a new involuntary value just as privacy is today.
If the majority of users on the internet shares details that are currently perceived as intimate and private by many today then what does this say about those who refuse to share?

Different people are comfortable with different levels of their lives being exposed to the world. The main problem I see is that you do not fit in the acknowledged pattern where you should be. He can say motherfucker as many times he wants, he can talk about his private parts, but not you.
As, how you said, a gay some years ago was not allowed to say I am different, because I like men. I had a feature on Firefox by which I could type two words in and the browser went right to a website associated with the two words. Remember you have odd hangups too… recall the German sauna postings of a few weeks back. I felt as though I was eavesdropping on a conversation among friends (that is, my feelings and Jeff’s characterization of the posts align) but an eavesdropping that was known to the participants and allowed on the grounds that I appeared (by staying here) to be interested. I personally benefited from his openness and my relationships with some friends include more appreciation for what they endured, so I am evidence, I suppose, of the ripple effect of eavesdropping on conversations about topics I myself would not be comfortable initiating or conducting but am at least able to listen in on.
Keep at it and congrats to you and all the rest who don’t refer to yourselves pompously as Cancer Survivors. First, I must tell you that WWGD has convinced me to start making my voice heard in the digital world and I thank you for that. Dery seems to be struggling with losing the comfort of the analog system where consumers are happy to pay for information that is provided by a small group of authors whose work is assigned, edited and published by a corporation that lives within government and stock market standards. But the freedom of the digital world is dark and scary in that anyone can be an author and there aren’t editors and publishers keeping us safe by following government standards or Wall Street trends.
The time has come to realize that if we don’t like what we read or see, we just shouldn’t go there anymore. We need to be mature enough to tolerate things that don’t interest or offend us and not look to someone else to change the channel or turn the page. 1) Its your frig’n platform here, not someone else, he does not have to read what you write. 2) It is bold of you to talk about this and it is something that men need to talk about at the best of times men can not communicate about things that are personal or emotional. 4) Case closed, don’t give him any more of your energy, he is just trying to suck link juice from this. Written by NYC insider Jeff Jarvis, BuzzMachine covers news, media, journalism, and politics. I’ve just been writing that section of my book, arguing that when gays had to hide in the closet because their behavior was deemed unacceptable, that was a commentary not on their lives but on society.
Sadly, Dery doesn’t engage in the ideas there but only finds more excuses for overwritten insults. The solution was to come out in public and dare the bigots and prudes to continue their disapproval. As an oversharer, you want the world to accept your sharing, and you should be more accepting of the world’s reaction to you. You’re just doing a dance on and beyond the edge of acceptable behavior in order to further your career.
Why, with all the examples of incivility and stupidity and cruelty that deserve to be dismissed with all the emotional energy we can summon, is anyone anywhere wasting the valuable energy of their indignation on your prostateltyzing?

You are letting people get a real-life persepctive of a medical crisis, to include the icky parts. He take tool long to make a point and makes far to many references to pop-culture (which go over my head). People go on an on about how people are over-sharing or wasting their time on Facebook, twitter and blogging, but these people just don’t get it. To think of how many people would have decided to go out and get checked (I’m a few decades off worrying about that yet thankfully), more than outweighs the social taboo. My opinion aside, your argument would be stronger minus the fallacy, the cuss, and the quotation marks.
I do not want to imply that this is your aim but rather that it might be a consequence of a strong value of publicness. I argued elsewhere that if, say, medicine could learn more from every patient with a particular ailment sharing data about their lives and what leads up to onsets, then not sharing that becomes rather selfish to one’s fellow patients, doesn’t it?
If the purpose is to titilate then that’s very different to educating on how to do breast lump checks. Those of us in the brotherhood of the prostate-less benefited, if we were lucky, from a mentor who had cancer before us, and it seems sinful, frankly, not to share warnings, advice, even the goofiness of the aftermaths of biopsies and surgeries. Whether the conversation happens in literature, on the web, or even in person, there will always be those who would rather edit out the messy parts of life they dont want to hear about it. It’s now possible to read something that hasn’t been proofread for spelling, grammar or content.
What we know about Dery is that he’s prudish, disapproving, controlling, Victorian, media-obsessed, retrograde, predictable, snippy, snarky, and self-righteous with some apparent penis and anus problems he should be discussing with his shrink. We’re increasingly comfortable with the disappearance of privacy and the connections with people that allows. You can’t take credit for being open and honest and then be closed and hardened to criticism. Well constructed criticism is one thing, and has a right to be addressed as such – ideological fear-indused blather on the other hand.
A shy person with lower self-esteem might suffer considerably from criticism due to revealed personal details. I’m not suggesting or in favor of outing people involuntarily or stealing data from them.
While proponents of publicness want others to respect their right to share it is necessary to protect everyones right not to share. But if ubiquitous publicness is required to participate in the social web, they can only decide between further exclusion or amplified social anxiety. I try to ignore the personal attack and look for what’s really going on with my attacker.
There are few laws, for example, protecting gay men and lesbians from workplace discrimination. I’m not suggesting that people should be outed but that those who out themselves do, indeed, do so at the risks you list and that is what makes it all the more courageous and the more profound.

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