Posts about public parts

For the diseased

I cannot possibly do better than Zeynep Tufekci in taking two journalists — New York Times columnist and former executive editor Bill Keller and his wife, Guardian writer Emma Keller — to school in a brilliant post that explains how each exploited and offended, misinterpreted and mistreated a mother who they think is doing too much and saying too much about her cancer. Please, please go read that now.

I will address only one matter myself: blogging and tweeting — or as we used to say, talking about — disease.

I will readily tell you about my prostate cancer and consequently malfunctioning penis, about my thyroid cancer, about the atrial fibrillation that came after I sucked in the dust of destruction at the World Trade Center, and while I’m at it, I might as well add a note about my bursitis.

I don’t do this because I am a hypochondriac or want an ounce of sympathy — I deserve none as I have had cancer lite, with no chemo, no radiation, only momentary pain or inconvenience, and most importantly, no mortal threat. I don’t do this to take part in what my elderly parents living in a community of elderly friends call “the organ recital.”

I do this because I gain support and information and because I can give others support and information. I do this because I believe we must talk about about sickness, openly and honestly, to rob it of its stigma, to pool what we know about it, to teach people about it, to influence policy about it.

And why shouldn’t we? It’s just disease. It happens to all of us, except those who come to violent ends. Imagine a world in which there is no stigma about illness, in which ailments are not a matter of privacy or lost insurance or jobs, in which we collectively share and learn as much as we can about what afflicts us so it can afflict fewer. It’s just data.

So I am astounded that two journalists who should support transparency as a virtue come to question the ethics of Lisa Adams for talking about her disease. It is her disease. It is her motives that matter, generously trying to educate people about her treatment. How dare a journalist of all people try to tell someone what she cannot say? How could a journalist seek less information in the world?

When I blogged about my prostate cancer, one and only one guy — who didn’t like me anyway — similarly complained that I was saying too much. He accused me of oversharing. I said the problem is not that. It’s that he was overlistening.

If Emma Keller doesn’t want to read about Lisa Adams’ cancer, then she shouldn’t read it. If Bill Keller thinks Adams should not treat her cancer and her pain, well, he should mind his own business.

But if they do want to act as journalists in this new age, then they must follow Tufekci’s advice and learn that when they read someone’s words, they are not interacting with media, they are interacting with a person. It so happens the person they were writing about is brave and generous. They were not.

And we all should be welcoming the opportunity to hear more voices, learn more perspectives, gain more information. And we should all be wishing Lisa Adams our best for what she is going through and what she is offering us.

Social is for sharing, not hiding

I fear we are on the verge of fetishizing privacy. Well, we’re not — but our media and government are.

Media’s assumptions

Yesterday I got a call from a journalist about Google+ and its Circles. He was not at all hostile to Google, Facebook, or social, but even so, implicit in his questions was a presumption that privacy is our highest priority in social services.

Think about that for half a minute and the absurdity of it becomes apparent. We don’t come to social services to hide secrets; that would be idiotic. We come to share.

The journalist said that people must be afraid of being public. Think about that for the rest of a minute: Media and government have held a monopoly on publicness as they have owned the megaphone and soapbox. Now the internet gives the rest of us the ability to be public and these long-public people think we are scared of what the have? How patronizing of them.

The meme about Google+ Circles is that it beats Facebook on privacy because it gives us upfront control over whom we share with. That’s true: Every time I share something I make a decision about whether to share it with the public or some of my circles. That is better, clearer, and easier than digging into Facebook’s settings once and for all to silo my world. It is better than not bothering to change those settings and depending on Facebook’s defaults, only to find them change and become more public. Google+ got to learn from Facebook and start with Circles to enable this difference.

Except I have watched my own behavior with Google+ lo, these 36 hours and I find at when I share with less than everyone it is not out of privacy or security needs. It’s out of relevance. I may have something to tell my TWiT colleagues or my fellow journowonks that would bore everyone else who follows me. So I restrict my audience not to keep a secret but to reduce noise for them, which I can’t do on Twitter or can’t easily do on Facebook. I am still sharing; it’s better sharing.

The journalist talked about Zuckerberg and Google wanting us to share — and they do because, as I’ve said, they depend on getting us to generate more signals about our interests, needs, and desires so they can gi e us more relevant, thus valuable content, services, and advertising. But in the journalist’s phrasing I heard him implying that Zuckerberg and Page were squeezing stuff out of like toothpaste tubes, against our wills.

Nonsense. As I say in Public Parts, 600 million people can’t be wrong. We are sharing a billion things a day on Facebook alone because we want to, because we find value in it. That’s where the discussion should begin, with the power of publicness, not with the presumption of privacy.

Government’s presumptions

I was delighted yesterday to see a senator — Pat Toomey of Pennsylvania — warn his colleagues against “breaking the internet.”

Some are in such a rush to regulate the net and protect what they and media think is our highest priority — privacy — that they threaten to both hamper how sites and services and operate and how they can sustain themselves.

Jay Rockefeller is pushing do-not-track. John Kerry and John McCain have a privacy bill. Al Franken has a bill to limit sharing of location data with third parties (those “third parties” are becoming the boogeymen of the digital age, though they are often just companies that serve ads, provide web services such as analytics, and sell us stuff).

I’m not suggesting that all this legislation is bad. We do need privacy protections. Sites must give us greater and clearer control over what we share to whom and why (as Google seems to have done with its Circles). Phones should not be storing information about what we do without our knowledge and without giving us control over it. Stipulated.

But I fear unintended consequences. Rockefeller’s do-not-track could pull the advertising rug out from under web sites, forcing some of them to go behind a pay wall — if they can — and killing other sites, reducing the content on the web. Franken’s location bill, I learned this week, does not have a carve out for sending data to ad-servers (they are dreaded “third parties”), which could kneecap the local-mobile content industry before it even starts.

Politicians and media companies are coming at these questions at the wrong starting line: as if we go to the internet to take a piece of private information and squirrel it away there. That’s not what we’re doing. We’re sharing.

: MORE: On Twitter, @hasanahmad complains that when sharing a photo with a circle members of that circle could share it in turn and then it becomes more public.

Yes, absolutely. That’s how life works. You tell a friend something. Then, as I say in Public Parts, the responsibility for what to do with that lies with that friend; what you’ve said is public to that extent and whether it becomes more public is a decision your friend will now make. It may be fine to share in turn; it may not be. You’d need to set those conditions with that friend before sharing. And if you don’t want the friend to share, maybe you shouldn’t share. The issue here isn’t technology. It’s people. No change there.

So I asked my Twitter interrogator what he proposes we do about this: Put license conditions on the photo we share? Sue the friend?

This is where Eric Schmidt is right. I’ll paraphrase him: If you want to hide something, the worst place to do that is on a social network. That’s where you share. Your brain is where you hide secrets.

: SEE ALSO: Jonathan Allen on sharing for purpose v privacy.