Personal Health  
comments_image Comments

Is the Internet Nightmare for Social Life? Possibilities for Real Connections Are Emerging

The Internet may seem like a 21st-century nightmare version of the worst excesses of the marketplace. But it's also creating new possibilities for connection and conversation.

Continued from previous page


"I went from 46 friends to hundreds—my friends' friends, people in the community. Because I was posting to a pretty wide audience, I held back at first. Finally, I started talking about the screw-ups." A botched diagnosis was followed by inconsistent and uncaring treatment, and, worst of all, a refusal to disclose information about her husband's rapidly deteriorating condition. At first, Fred worried that his wife's complaints would "make it worse," but in his final weeks, he told her, "Go get 'em, honey." Four days after his untimely and horrific death in June, Holliday poured her grief and rage onto a concrete wall in the CVS parking lot on Connecticut Avenue. It took her 70 days to complete a 25-by-50-foot, Guernica-like painting that captured her family's tragedy. Its title— 73 Cents—refers to the per-page cost of obtaining her late husband's medical records.

She's just a housewife and mother, but if you Google "Regina Holliday" today, you'll get 4,870,000 hits. They'll take you to her blog about her Medical Advocacy Mural Project, to media coverage of her story, and to other "Health 2.0" bloggers who coached her and helped spread the word. You'll see her at a press conference with Kathleen Sibelius, where the Secretary of Health and Human Service thanks Holliday for her heart-wrenching testimony. Hearing Fred's story helped convince lawmakers that patients, not just medical personnel, should be included in the "meaningful use" portion of the Health Information Technology for Economic and Clinical Health Act (HI-TECH). Holliday says that her story was "bad enough" to attract attention, and it played out against the backdrop of national healthcare reform. She knows she couldn't have done it without the help of her consequential strangers in D.C. and online. "A husband and wife who own a deli gave me a wall [to paint on]," she writes on her blog. "A man who owns a gas station gave another wall. I painted and you blogged, tweeted, and posted on Facebook."

The New Social Contract

In 2008, Chris Elam, director of Misnomer Dance Theater, a small avant-garde troupe in New York City, launched an "Audience Engagement Platform," using videos and viewer comments, live chats and blogs. "There are people who are hungry for meaningful engagement with the arts," says Elam. His goal was to connect with fans and pique the interest of people who weren't yet dance-lovers. "Social media can extend our experience of the performance at all stages of the process." Why not allow patrons to comment on directors' decisions, vote on costume design, listen to dancers' conversations, volunteer to help out in ways beyond just writing a check? "They can see themselves as coproducers, not just bystanders."

A devil's advocate might point out that "audience engagement" translates into greater ticket sales, and that social media, in the world of commerce, is just a new kind of advertising, the elusive "killer app." Everyone seems to be trying it. But something else is happening as well. The most successful social media experiments—whether spearheaded by one person, a group of individuals, a company, or an institution—invite you in, treat you as a friend, and make you feel at home. Look around, they say, and tell us how we can make things better; get to know us. Get involved and tell us what you think.

"The Internet has changed our relationships and our social contracts with one another," maintains Beth Kanter, a veteran of the virtual world. Coauthor, with Allison Fine, of The Networked Non-Profit: Connecting with Social Media to Drive Change, in 2009, Fast Company named Kanter one of the most influential women in technology. When she talks, her 300,000-plus Twitter followers listen. "On my blog, I share everything I know." If a person or organization isn't genuinely committed to establishing relationships, sharing openly, and really listening to its constituents, Kanter says, social media is just window dressing. "In order to use the tools effectively, you have to change the way you work. There's a loss of control—transparency means having more porous boundaries. The norm now is to be open."