Amputees in Cyberspace

Taking Advantage of Social Media Without Being Taken Advantage Of

Disabled, differently abled, a person with a limb difference. We’ve all been there, trying to fit in, looking for the right niche, defining for ourselves and others who we are (whether necessary or not). However we choose to label ourselves, one common desire for most of us is to connect with others like us.

Before the Internet, information about amputation and amputees was difficult to find, and the existing support groups were largely for military veterans. As the Internet has grown, however, so too has the reach of networking. For those with limited mobility, the click of a button now provides access to numerous resources, including online emotional support, digital publications, websites, blogs, and social media platforms that offer useful information, inspirational stories, and friendship— all from the comfort of home. New amputees might be surprised at how much connectivity is available today.

United States Paralympian Josh Sundquist uses Twitter, Facebook, and his YouTube channel’s humorous, yet inspirational, videos to reach his amputee fans, keeping them motivated and amused. Author of Just Don’t Fall and We Should Hang Out Sometime, Sundquist takes advantage of these social media platforms to engage and educate.

The power of online social net-working is also demonstrated in the story of one amputee who used his dissatisfaction with the traditional appearance of his prosthetic limb to launch a worldwide business. Tired of the unrealistic skin tones of prosthetic sockets, Dan Horkey developed methods to paint and airbrush sockets after he applied a custom-flame design to his own. In 2008, Horkey founded Prosthetic INK, a GTOPI Co., Port Orchard, Washington (www.prostheticINK.com), and since then he has publicized the business largely through various types of social media, including LinkedIn, a social media platform geared toward business professionals. 

“I help others regain courage, self-esteem, and pride, and to ‘stand tall’ even if it means standing out,” says Horkey. “LinkedIn definitely helped me build my network and raise awareness of my company brand. Executives in my profession reach out to me every week from all parts of the world interested in our products….”

Social media can also help bring us together to change laws or policies that affect us, although amputees have not taken full advantage of this potential yet. Twitter and Facebook have been widely used from Cairo to Wall Street to spread petitions and organize protests.

One example of using social media in creative, problem-solving ways is Taylor Church’s story. After being admitted to Palomar Medical Center in Escondido, California, on May 16, 2012, due to septic infection, the 21-year-old had no idea she would wake up a quadruple amputee. Unfortunately, the drugs used to treat the sepsis also inhibited circulation to her body’s extremities, and saving Church’s life meant sacrificing her limbs.

At first, Church’s parents were intensely focused on their daughter’s recovery. However, when Taylor’s insurance would only cover 80 percent of her medical bills, they not only used social media to update friends, family, and well-wishers about her condition, but also employed those platforms as fundraising tools to raise the money to pay the remaining 20 percent. They began with the Team Taylor Church page on Facebook and Instagram, and a personal blog on Yahoo!’s Tumblr also made a difference.

“We recently started a Team Taylor Medical Donations GoFundMe account for this current round of surgeries, and it has been very successful,” says Church’s mother, Laurie. “The average donation is $50 or $100 each, and we have received a little over $2,000 so far. The outpouring of love and support has been amazing.” GoFundMe is a crowdfunding platform that can be used to acquire funding for events, people in need, or special occasions.As positive as connectivity may be, there are also inherent dangers in having an online presence. It’s easy to open up to strangers online, especially when they offer understanding, empathy, and support. This can have a powerful effect on a person’s judgment and lead to lowered defenses. A few wink and smiley emoticons later, our trust is gained, and, eventually, we might give them access to more personal information—potentially threatening our security. It’s far too easy to forget that there are people online who are not genuine and who use the computer screen as a curtain to hide behind. These people could turn out to be stalkers and use information they acquire online to find us; they could be thieves who want to steal our identity, or worse.

For Church, social media has been both a blessing and an annoyance. Although an online presence helped her make connections that were vital for her emotional well-being and also now enables her to offer support and inspiration to other amputees, it also attracted unwanted attention. Her Instagram images were stolen and posted to various fetish websites, and crude comments were posted to her account.

While social media is a great way to network, it’s important to remember that meaningful, lasting connections are best fostered through in-person interaction.

Also, those who engage through Facebook and Twitter know how quickly one hour can pass into the next as we pore over feeds, Likes, and tweets. Being indoors, glued to a computer screen too long can cheat us out of human contact, and also out of exercise and a “real” life. Getting better often means being able to navigate both worlds—the virtual and the real.

As long as safety and a healthy balance are kept in mind, the Internet can offer us almost unlimited access to peers and resources within the amputee community, making finding support and our own special niche easier than ever. 

We just have to be sure that we are in control of it, and it is not in control of us.

For tips on protecting yourself online, visit www.justice.gov/usao/gan/programs/internetsafety.

By Elizabeth Bokfi