South by Southwest 2003 VI

Dana Robinson: User Not Found

Robinson is online community manager for a nonprofit called Starbright that provides media-based products to seriously ill children. She is currently developing a Web site devoted to the death of online friends. Here is a rough transcript of the discussion:

Nobody else wanted to be on a panel about dying and death, so it's just me. When we talk about experiencing the death of our online friends, we have to go into it believing that these friends are real and legitimate. I don't want to go into the whole Ripper/IRC/Webcam suicide thing. While it's unclear whether what he did was suicide, the fact is he did die. He took huge doses of Methadone and Oxycontin while he was on a Webcam and on IRC. There was a huge debate whether it was a suicide or whether he was just being dumb with drugs.

I'm also not trained to treat grieving. I'm wanting to learn from you as much as I want you to learn from the conversation. I decided to do this project not because I'm gothic. Although I do wear black and have black hair. It started back in 1994. I was using a Telnet-based, Mud-like chat system. I became friends with this guy David who was chronically ill. He was popular within the community, and one day he just stopped coming in. One guy called his parents, and they told him that he had passed away. He wanted the Mud to know that he'd passed away, but his parents didn't know who to call.

I decided to write an essay about it for a journalism class, and I called a bunch of sociologists. They didn't even know what email was so I couldn't do the project. Two years ago I started talking to this guy in Chicago named Timothy. He was 34 and had cystic fibrosis. We talked on the phone a few times, and then he stopped answering his phone. Then the phone number went away. I wondered what was going on.

Online, relationships can be anonymous. You can know a lot about someone, but you might not know how to reach them in real life. Then I got interested in the topic again because of the work I do for Starbright. We hook terminally sick kids up online. Not a lot of kids living with sickle cell [anemia] live in Iowa. Online, they can find other kids with sickle cell, talk online, and feel like they're not alone. One of the kids we got really close with was Bianca. She was dealing with her third bout of cancer, and she'd call us every day to talk to our staff. She was online 7-8 hours every day. When she passed away, I didn't really think I'd feel emotionally invested in one of our users. Her mother told us that my boss and I were in her last thoughts. It was really, really rough.

Our relationships are really getting more intense online, and we need to know more about how to deal with death. User Not Found is my site where I post essays while I'm doing research. The killing off of the persona is another thing I'm looking into. There aren't a lot of people doing this research. There's nothing that's been written. So it's really weird.

In doing my research I've found that online communities in a couple of different ways. They may keep the account up so nobody else can use that ID. And if there are profiles, they may keep the profile available, maybe marking it with a RIP and the years they were alive. They might also set up memorial pages, living obituaries that talk about what they did, how they remembered. And a lot of the gaming communities may have annual memorial events where they have their own little events where they have a memorial avatar. They put down their weapons, come to a central meeting place, and mourn the loss of one of their users.

And some online communities don't do anything. They take no action. And that's unfortunate. With Starbright, we need to be careful. You can't step on parents' toes. Some parents want their children to learn about death in a more controlled way. We're looking into having some sort of a memorial garden that would be online as well offline. They could plant a virtual tree online and write some words about their friend who died. And we could send them a packet of seeds so they could plant a real tree of their own.

At my job, we handle the taboos around death by making jokes around it. That can be even worse. If we don't make jokes, there's no way we can make it through our days. People need to start talking about this and having these sorts of conversations. Clearly it's an issue. The more we interact with people online, experiences like this will become more and more relevant. Now more and more people are accepting the fact that the friendships are legitimate. They have real feelings of grief and mourning. They feel like these feelings aren't legitimate. I would argue the opposite. You probably know them better because you have this veil of anonymity. It may be more impactful if the friends are online.

Some ISPs have policies in place where they require proof of death certificates. It's hit or miss company to company.

Now let's talk about the online cries for help and the community's responsibility to react to those cries for help. Sometimes the intent is not to die but to get some attention. In one instance, a woman took too many pills to be well, and a community member called 911. They tracked down her phone number and were able to get their in time.

Brad Fitzpatrick: I'm Brad from LiveJournal. I had to deal with a lot of those emails saying there had to be a way we could track her down. We were able to get her address from a payment she'd made via check or something like that.

The community was able to rally together and were interested in saving her. If you read the chat transcripts from Ripper on IRC, people thought he was fooling around and didn't really want to kill himself. As he was passing out, people started saying maybe they should call someone. If they'd called somebody, they could have sent someone over quite easily. They had ways of getting ahold of him. But because of their not gettign involved stance, he ended up dying.

Is it overstepping the bounds of the online relationship to bring in the authorities? One of the problems is the hoaxes that have been covered. Because of all the publicized hoaxes, people don't take real situations seriously. The reality is that there aren't many hoaxes. There are more realities than hoaxes. Community managers have a responsibility to investigate further. In the community that I manage, if a kid even mentions suicide, we call their parents and bring in a specialist.

Cory Doctorow: When Google wrote its algorithm for what comes up when you type suicide, they put a lot of thought into it. Right now, the top results are suicide hotlines. But sometimes, when the algorithms aren't working right, it's pages of people telling each other how to kill themselves.

Matt Haughey: It's interesting that when attempts are visible -- there's a Webcam -- they're taken more seriously because you can actually see it happen.

How Americans deal with death is so unhealthy compared to a lot of cultures. And how children deal with death compared to adults is even more different. Children deal with death so healthily. Everyone could learn a lot by talking to these kids.

Paul Bausch: I think it was in the Tipping Point, but if someone dies because they committed suicide and newspapers put it on the front page, it can be seen as permission to kill yourself.

If you over-memorialize kids, and kids view suicide as a way to escape from their illness, you have to be careful how kids take those memorials. You don't want to over-romanticize it.

Another thing I'd like to talk about is when people who aren't really that active in a community die and the community rises up to recognize them. On Fark, there was a guy who didn't post much at all, but when he died in a car accident, the community rose up. There were so many posts about this kid, and nobody knew him. It made me start thinking: Does a person's usage in a given community correlate with how the death is received. Do accoladed users receive more memorials? I think that's how it happens in communities. The community feels a definite impact from that loss. But it's sort of disappointed when someone who's not a big user passes away.

Question:I think it's important to look at the quality of someone's activity. Some people might not post much, but they post well.

Smaller users can make deeper connections with individuals, but it impacts the community in a different way. Active users impact the entire community. On Starbright world, the kids are much more willing to talk about it than the adults are willing to ask them to talk about it. Adults kind of present barriers where there don't need to be barriers.

If you thought that one of your online friends died, how far would you go? Where would you draw the line between doing your own personal research and overstepping the bounds to impose on someone's privacy? Would you contact the family? When we contacted David's family in 1994, most families would have been closed to being contacted by strangers in their time of grieving. For you, as a person, to be able to move on, you kind of have to know what's going on.

There's a service called Died Online. You register. And you choose the increments on which you check in on the site. If you fail to check in twice based on your increments, the service contacts people you've listed to let them know that you haven't checked in for awhile and they might want to check in with you.

For my job, we're working in prevention as well as what to do if it's already happened. It's tough. You have to take it on a situation by situation basis. It's hard to come up with a protocol that you'd follow consistently because if you know the individual. It can be different in every case.

Only now are we even really at a point where we can have these conversations. Things change so rapidly. Maybe a year from now we'll have this conversation and it will be totally different.

Brad Fitzpatrick: Whenever someone dies on LiveJournal, and it's happened maybe a dozen times now, the last post will get hundreds of comments.

That's one of the healthier things I've seen. It's grieving. It's sharing. And it brings the community together so people don't have to deal with it themselves. The only deaths I've experienced have been online. Friends, family. I've only experienced death online. That might be why I'm so interested in this.