Why Does Facebook Matter?

I remember feeling a surge of hope when I read last year that social networking sites had surpassed porn in terms of Internet traffic. Good news, I thought — maybe we aren’t doomed to the hedonistic demise predicted by cultural historians. Perhaps this increasingly seductive technology could even deliver us to a finer place: a world with more genuine human connection.

Tiffiny Carlson

Surely it’s premature to declare social networking the savior of humanity, but adopters of “everyone-knows-you’re-a-dog-online” interaction reached critical mass in recent months, rendering the early Internet ideal of anonymity almost quaint. With more than 250 million users on Facebook alone, there’s no doubt we’re navigating a Web revolution unseen since “Google” cracked verb status.

Today, the operative verb is “friend.” In the parlance of Facebook, millions of people friend each other every day — and the more connections made, the fewer degrees of separation between everyone who participates. Under his or her real name, each Facebook user shares life updates with an average of 120 friends, and many exceed that number by hundreds or, in some cases, thousands.

What does all this mean for people with disabilities? A lot: Every connection represents an opportunity to break stereotypes, exchange support and reduce isolation. Facebook also offers a free method of publicizing helpful disability organizations, books, products — and the people behind them. Advocates view it as a powerful tool for social change. Throw in the fact that it’s just plain fun, and suddenly you have a lively, integrated community that’s been hard to achieve in the physical world.

A Life in Full
Few people approach Facebook with the zest of Tiffiny Carlson. While many Facebook users choose to set up separate business and personal accounts, Carlson posts about everything in one place: plans for her weekend in Minneapolis, photos from a goth prom, a blog entry on buying condoms from a wheelchair, sadness on the birthday of a friend who died, the best ice cream in town, cool new wheelchair technology, what happened at the David Bowie tribute concert, cracks about Scientology … and so on. The result is a vibrant and whole picture of her life as a young woman with C6 quadriplegia, and that’s exactly what she wants.

“It’s kind of an ongoing story for people,” says Carlson, 29. “It shows people, here’s how someone’s life is day in and day out. I constantly have people say, ‘Wow, you live better than most people’ because I’m kind of decadent and I like to do fun things, and people are always surprised. I find it a little bit offensive sometimes because people automatically assume my life must really suck because I can’t walk. So all the pictures and stuff I post on Facebook, it’s kind of a way for me to change people’s stereotypes.”

Carlson sees this as part of her mission in life, for both nondisabled friends and people new to disability. She tells the story of one Facebook friend, a quad from South Carolina, who hadn’t had sex since his injury. “He’s seen my pictures and sometimes they’re sexy,” she says. “And he wrote me a message one day that said, thank you for just being yourself on Facebook because it really helped me feel like that’s not completely impossible for me anymore.”

Carlson’s undeniable joie de vivre inspires multiple comments from her 408 friends as she updates her status a few times a day. Her voice pops from the first words on the page, the tidbit under her frequently changed but always-sassy photo: “Wait. I can’t walk? This is bullshit.”

She seizes every opportunity for humor because it’s such a powerful way to get people to let down their guard. “You can make fun of yourself and your disability and let people know they don’t have to feel so awkward around you.”

Like Carlson, Tammy Wilber, 33 and a T5-6 para, says one of the most important roles of her Facebook page is showing nondisabled friends — especially those who knew her in high school right after her injury — that she is living fully.

“When I was first injured, I had this big bulky wheelchair and I wasn’t very independent,” Wilber says. She wasn’t driving yet, and an allergic reaction caused her hair to fall out. “So when I went back to high school, I didn’t even look like me. All these people that I graduated with, I always felt like they had this idea still in their head of who I was.”

She lost touch with them through the years, but now she has reconnected with many on Facebook. “To be able to show them what I’ve done with my life since I graduated has been really important to me,” she says. “I’ve gotten so many responses from people like, ‘You look great, and I’m so glad to see what you’re doing with your life.’”

What does she most like them to see?

“Just simple things, like the fact that I’m independent,” she says. “They saw me at my worst, and just to show them that I’m doing sports, that I date. Not that I’m trying to prove myself to them, but just to show them that I’m not the girl that had the bald spots and was bloated from surgery in a big clunker wheelchair being driven to school by my mom. They just saw me through that first year, and I got better. I didn’t walk again, but I’m living my life.”

Meaningful Connection
It’s easy to think of online friends as superficial by definition, but for many people, a little contact goes a long way. “Due to the fact that there is a high unemployment rate, I find that there are so many people on different disability websites, and that’s their way of connecting so they don’t feel isolated,” says Wilber, who was recently laid off herself. As the former social networking coordinator for Varilite, a wheelchair cushion company, Wilber learned as part of her job just how meaningful personal contact from a fellow wheelchair user could be. Now she continues to connect on her own time.

“I try to reach out to a lot of women in different countries — they might have Internet access but they don’t have physical access,” says Wilber, who lives in Seattle. “To me that’s been really important to say, ‘hey, you’re not alone.’”

With 16 years in a chair, Wilber has a lot to offer. “There’s a girl who just contacted me on Facebook asking me how do you go to the bathroom on a plane, how do you make sure a room is accessible, do I have to bring my own shower chair?” Interestingly, these queries exemplify a trend the July issue of Wired magazine calls a fundamental shift in the way we seek information: Instead of relying on Google’s cold algorithms to anonymously locate objective data, we are turning to personal connections for peer-validated information, product reviews and determination of relevance. In fact, Facebook has publicly stated that it intends to colonize a second Internet — a global network of friends and partner sites that could replace Google as a means of searching the web.

Christiaan Bailey, 28 and an L3-4 para, finds himself in that peer-oriented world. He’d been using sites like MySpace before his injury because, as a professional surfer, he was crisscrossing the globe and found it the easiest way to stay connected with friends.

“After I got hurt,” he says, “I encountered a bit of a paradigm shift in my reasons for using social networking sites. They became an impromptu SCI peer support group for me.” Bailey, of Santa Cruz, Calif., relied heavily on the website Apparelyzed.com, because it was recommended by one friend in a chair and vetted by another. Although most users communicate with screen names, “members were of great help in coaching me through emotional trials I was going through at the time,” he says. Still active on the site, he’s drawn many members into his other online networks in which people use their real names. “It’s pretty phenomenal the relationships you establish over time,” he says. “The nicest part about it is, we can ask each other anything.”

Another longtime social networker, Tom Turner, who has spina bifida, made a dear friend through MySpace. About a year and a half ago, Turner, 38, got a friend request from someone named John.  “John turned out to be John Paige of Corinth, Vt.,” Turner says via e-mail. “Now, this doesn’t seem out of the ordinary, but on my MySpace profile you can tell I’m disabled, but I never disclosed the fact that I was born with spina bifida, so here is the funny part: John is the father of an adorable 8-year-old daughter named Erin who was born with spina bifida!”

This is the kind of serendipitous connection Turner finds so compelling about social networking sites.  “What keeps me coming back is Facebook has this feature called ‘People You May Know’ — it’s kind of a ‘Six Degrees of Separation’ thing where they connect you to people who are your friends’ friends that you may also know.”

Turner spends considerable time online — he directs e-commerce for his family’s business, Turner Automotive Corvettes in Victor, N.Y. — but so far none of his networking has topped his connection with Paige. “John and I have become very close, and I’m honored to call him my friend.”

Even Closer
While Facebook is not a dating site per se, it is edging into territory formerly occupied by romance sites like eHarmony and Match.com. But it offers a completely different approach: Instead of crafting a profile designed to attract mates and actively looking for dates, you post your life as it happens and rely on the concept of Six Degrees to facilitate a love connection.

Carlson has been on two Facebook dates. The first — a friend of a good friend — was a bust. Savvy Facebooker that she is, though, she finessed the situation and didn’t even have to “defriend” the guy.

The second man, the well-known comedic host of a local show called Dude Weather, had seen her at a concert and asked her friend about her. Flattered, Carlson looked him up on Facebook. Sure enough, he was on there, so she sent him a message with a friend request. He friended her. “We started talking online, and we ended up meeting for coffee a couple weeks later, and it was a really, really good date.”  They have plans to go out again.

“I could have gone to his website and sent him an e-mail,” Carlson says, “but by adding him on Facebook, he was able to see my whole life. And that sold me in a really awesome way. He was really excited to meet me after he saw all my funny pictures, the stuff I do and the costumes I do.

“Now I really understand the power — it’s like a personal ad, you’re advertising yourself to the world. Facebook is not always for romantic purposes, but in a way it’s good because you’re kind of tailoring it in a more platonic way. Then if romantic interests see your page, you’re not coming across as desperate or saying silly stuff that you might say. It’s just regular life.”

Too Close
Despite her openness, Carlson remains vigilant about who she friends — ever since an online stalker drove from California to Minneapolis to look for her. “He found my house by looking at pictures of my neighborhood on my Facebook,” she says. “He walked around downtown until he saw my building.”
Naturally, she got a restraining order. “You have to be careful,” she emphasizes. “There are some really obsessive people out there.”

For this reason, Carlson doesn’t join many wheelchair groups on Facebook. “I join lots of causes, like spinal cord research,” she explains, “but if you see a group that’s like ‘girls in wheelchairs group,’ do not join that group. It’s just a red flag asking for devotees to come and stalk you.”

Wilber says the problem of devotees is bigger than many people realize; just as social networking makes it easier to form positive connections, it makes it easier for devos to find their marks. “It’s an obsession that they have,” says Wilber, who banded together with friends to warn women about one group in particular. “One time I accepted a friend that was in this group, and this man started asking me very personal questions, and I immediately blocked him and deleted him.”

Men can be targets, too. “The biggest downside to social networking is the creep factor,” says Bailey, who has encountered devotees, foot fetishists and wannabees. “Although I’m going to make a point of saying that not all are genuinely bad people, the flip side is that many are — making incredibly inappropriate comments, and even going so far at times as to steal your pictures and repost them on fetish sites. It’s very, very disturbing.”

Wilber advises checking for mutual friends when you get a friend request. The more mutual friends you have and the closer those mutual friends are to you, the safer it is to accept a friend request. It’s also worth taking the time to understand Facebook’s privacy settings so you know who is seeing what.

The Personal is Professional
Marketing looms large on Facebook. In a sense, we are all marketing ourselves — putting forth our best material — but some Facebookers craft more deliberate public relations campaigns than others.

“Everyone uses their status updates for different reasons,” notes Carlson, “but for me, as a writer and media personality with my podcasts, I need to keep people interested in what I do. I like to keep my status updates interesting.” Hooking her friends with her saucy posts often translates into clickthroughs to her blog on Disaboom.com or her podcast for Xable.com.

Writer Gary Presley doesn’t exactly let it all hang out in Facebook photo albums or personal status updates, but his goals are similar. As author of Seven Wheelchairs: A Life beyond Polio and a frequent blogger, Presley, 67, reveals in discreet increments his unique point of view. “For me, the personal is professional,” he explains via Facebook’s internal e-mail. “I reveal personal elements in order to speak out about what it means to be a person with a disability in the world. As to the ultimately personal, I never post anything I would not say in public.”

The result is not as bloodless as it sounds. Presley analyzes key news stories in his blog, such as the movement to eradicate “midget” from the TV lexicon, and shares those blogs on his Facebook page, along with daily witticisms on all topics. But he readily admits that his primary goal is to market his memoir. Facebook, he says, “is a public place to say ‘Look at me!’ A writer soon learns that calling attention to oneself is a marketing tool.”

In fact, the “viral” marketing power of Facebook is staggering, as friends share with friends who share with friends ad infinitum.

Wilber, state coordinator of the Ms. Wheelchair Washington Pageant, uses it to get the word out about the current title holder and arrange speaking engagements. As a rep for the Free Wheel, she uses it to share videos of the product with her 927 Facebook friends. “I try to make it more personal, being another person in a wheelchair,” she says. “I don’t consider myself a salesperson. If I truly believe in something that will benefit other people with disabilities, I’m more than happy to share the information without being pushy.”

Bailey spreads the word about adaptive surfing and personal growth via the social pages for the Life Rolls On foundation and his own foundation, Oceans Healing Group.

And companies themselves? They’re getting in the game with Facebook “fan” pages, a friendly way to interact with customers and promote the lifestyle aspects of their products. Sunrise (www.facebook.com/quickiewheelchairs) recently sponsored a photo contest with a wheelchair prize; Facebook users voted to choose the winner. New Mobility (www.facebook.com/newmobility) is considering similar projects, including a video contest.

But the best commercial use of Facebook may be event marketing. Tucson, Ariz., artist Carolyn Stanley Anderson and her colleagues recently drew 250 people to a gallery show, using social networking alone. And she says her Facebook page has been invaluable in promoting her work. “Part of my art is my story,” says Anderson, 35 and a T12-L1 para. “If people see my art and they know about my story, it changes how they view my art. For that to happen someone has to meet me and kind of get to know me, and I think Facebook allows that to happen” because interested people can learn about her accident, her role as a mom and see her story unfold online in real time.

Taking the PR potential to its logical conclusion, Anderson thinks Facebook offers the whole disability community a chance to be seen more clearly by the larger culture. “It allows a visibility that could have tremendous effects in terms of raising the status of people with disabilities,” she says. “It makes us visible in a way that wasn’t available before.”

The End of Isolation?
Almost everyone describes Facebook as a way to mitigate isolation. “Those of us who do not drive or who live in relatively small towns or cities find ourselves in a community,” says Presley, who lives in Springfield, Mo.

“It makes socializing really easy, and as a person with a disability that’s really important,” says Carlson, who sometimes struggles with the Minnesota climate. “I always feel like I’m stuck at home a lot, especially in the winter,” she says. “And for many years when I first got out of college, it was hard for me to make friends. Now there are so many things that I’m constantly invited to.”

Gone are the days of getting a name and number at a party or bar, she explains. “Maybe you never hear from those people again, but if you add them on Facebook, you are more apt to keep up and get to know them better. And then you get invited to all these different parties — it’s a domino effect.”

Denver activist and writer Laura Hershey, who has spinal muscular atrophy, says it’s not so much about meeting new people as staying connected with longtime fellow advocates: “When you see people once or twice a year, or even less often, it’s hard to keep up with them,” says Hershey, 47. “Facebook lets us stay in contact, even see each other’s photos of home, families, local actions, travels, etc. I find that really fun.”

Social networking can, in many cases, propel people into additional civic involvement when attending every meeting or demonstration is unrealistic.

“Participating in quasi-political action through Facebook is easy,” notes power chair user TK Small, a 44-year-old Brooklyn attorney, disability radio show co-host and real-life advocate who is also a member of 11 Facebook activism groups.

Presley goes so far as to say that today’s social networking is so effective and compelling that it can cause addiction. “A virtual world like Facebook can too easily consume too much time,” he says. He worries that instead of “a positive influence on a healthy, sophisticated life,” some will see it as “life itself.” “That which can be so helpful in the life of a person with a disability can become a source of further isolation if not approached with a firm concept of what it is and what it can do.”

Bailey, who has 646 Facebook friends and 3,459 MySpace friends, knows what it can do — and has done — for him. “I’ve made so many meaningful connections through online social networking, it’s not even funny,” he says. “From business relationships, foundations and sponsors, to mentoring people with new injuries to [finding] old friends. I can say in all honesty, that I wouldn’t be where I am today, had it not been for social networking sites.”

 Why Are NM Readers Using Facebook?
In July, 971 NM e-newsletter subscribers responded to an e-mail survey about Facebook usage.
Here are the results:
• 72 percent have Facebook accounts
• 38 percent of those who use Facebook log on to the site daily; 24 percent log on more than once a day
• 73 percent of daily users spend one hour a day or less on the site; 12 percent spend more than two hours
• 62 percent have fewer than 80 Facebook friends; 7 percent have more than 300 Facebook friends
• 64 percent have zero friends with disabilities; 14 percent have more than 20 friends with disabilities

Why should Facebook matter to the disability community?

Alan Toy: “Facebook is a virtual community. It opens doors to easy and broad communication without many barriers. There are some access issues, but it is still a great way to spread organizing messages, connect with friends near and afar and to express yourself, through creative uses of the site’s many apps and the sharing of pictures, art, and other statements, whether they be personal, professional and/or socio-political in nature. Facebook rocks!”

Eliza Ross: “I think Facebook provides a great bridge between the ‘ghettos’ of the listservs/Yahoo! groups/online communities of various conditions and disabilities and AB folk.”

Freddy Anglero: “Everyone should be a part of Facebook no matter who or what they are in life. We still need to keep in touch with friends and family. Just about everyone on my list has known me before I became disabled. Now that I am a disabled person, should I forget them? Lose touch with everyone? I don’t think so.”

Kelly Samson: “Great way to communicate. Here is my personal dilemma on Facebook. I lost touch with most of my ‘Friends’ before the primary progressive MS diagnosis. When do I share that and also that I use a wheelchair? I don’t want to be all gloom and doom off the bat, but it just gets harder as time passes.”

Brandi Plemmons: “Myself and others are often looking for inspiration on our daily journey through life, and Facebook keeps us all connected, inspired, and acts as a ‘word of mouth’ type vehicle if one of us finds something interesting that we know could benefit others. I don’t want to keep the best things a secret — I want to share them with my family, friends, and sometimes even complete strangers.”

Mark Edwards: “It provides a reach much further than any disability based magazine or website can ever hope for. For me personally, it allows my friends and family to see the causes and activities related to spinal cord research that I support and provides them a chance to support those endeavors as well. It also broadens their knowledge of the SCI world beyond me.”

Mark Plocharczyk: “Online social networks take down the visuals of disabilities. Your personality will be seen before your disability.”

Kyle Glozier: “A lot of college students are on Facebook, and that is a good organizing tool. You can reach more people than at conferences and [ADAPT] actions.”

Ryan Creech: “It is a really fantastic way to keep in touch with others with disabilities. I use mine to keep up with a couple of old nurses and therapists as well. Facebook is a very comfortable way to re-introduce yourself into the community following an accident that leads to a disability; when I was in the hospital, all of my friends followed my progress through Facebook.”

Anonymous: “Facebook is a place where I make contacts with my friends. I would not reach out to people I don’t know on FB, nor would I accept friend requests of people I don’t know — and since I have very few friends with disabilities, I don’t think of FB and disability. I do think that posting pics of me doing outdoor things using my chair or adaptive equipment is educational to my 140 friends.”


Trading Anonymity for Advocacy

By Mike Volkman

I  have only been on Facebook since Dec. 5, when I was roped into it by a friend. I had been resisting joining it because I was already on several other places and I felt that enough was enough. But then I got an invite to look at somebody’s page, and I thought OK, I will just look but I won’t stay. But in order to look I had to join. And in order to join, I had to use my real name instead of a screen name.

My friend had other friends I knew, and they had other friends I knew. I quickly realized that, while having a screen name offers a modicum of privacy and anonymity, it is much easier to find people you know if they are registered under their real names. I started reconnecting with people I have not seen since as far back as elementary school.

I was gathering more friends at a faster rate than I could’ve imagined. I was making connections with people from college, high school, family, and online acquaintances that I have picked up over the years. The largest contingent that I had gathered was the people that I interact with in the disability rights community. In just a little over six months, I have accumulated about 170 friends — about a third of them are what Justin Dart referred to as “colleagues in justice.” Some of them are people I have actually met in person. The rest are folks with whom I have been in correspondence online through the various mailing lists that we all belong to.

What I saw quickly happening was that instead of occasional e-mails popping into my inbox, there is now an almost constant daily presence of these people, with not just words but also pictures, links, and more informal interactions. I also instantly recognized how powerful a tool this could be for organizing and mobilizing people into action. For anyone who is familiar with disability rights issues, you know how necessary it is to organize and mobilize people into action.

With Facebook, you can establish categories or subgroups to organize your friends. You can send a message to every person in a category. I have set up such a category, which I have labeled “Gimp Nation.” If I wanted to send a message to everybody in that group, I can do it easily. Any one of those people in that group can do the same thing. This is a very handy tool for groups like ADAPT. Independent living centers can use this to set up local peer consumer advocacy groups.

With networking sites like this, the barriers of time and distance melt away. My elementary school classmates are scattered to the four winds. But now some of us have found each other, and we are reliving old memories and telling each other tales of our adventures since we last saw each other. The disability community is sharing something that Maggie Shreve brings to the NCIL conferences, the concept of “open space” — an unregulated, unprogrammed time and place where free-flowing ideas can spring up out of nowhere. We have people in every corner of the country, and we have new friends from far-flung places like Great Britain and even Mongolia who want to be a big part of what we are doing.

What we are doing now with Facebook really shows the true potential of what the Internet can do to transform our society. We are seeing changes that rival historically the invention of the printing press.

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