Feature story from Penn State News >
Julie Burns is your typical 19-year-old — she’s active in sports like basketball and soccer, she enjoys listening to all genres of music and she’s starting her freshman year at MassBay Community College. But one thing sets Burns apart from the average teenager: cerebral palsy (CP).
Although the neurological disorder presents many problems — speech and literacy are difficult and muscle control is limited — Burns isn’t slowed down by CP. In fact, Burns has learned to embrace the fast-paced world of technology, and, like most teenagers, she can usually be found scrolling through Facebook or uploading her original songs to YouTube.
But it wasn’t always this easy for Burns to stay in touch with her friends and family through social media. In fact, until recently, using social media through augmentative and alternative communication (AAC) devices, like the one Burns uses, was an unexplored topic in the field.
Thanks to research pioneered by Jessica Caron, a doctoral candidate in Penn State’s Department of Communication Sciences and Disorders, the relationship between AAC devices and social media is gaining a new understanding.
The term “AAC” refers to a wide spectrum of assistive communication tools ranging from writing and hand gestures to electronic devices that generate messages via symbols or text. In Burns' case, her device resembles a mobile tablet with approximately 80 icons representing different words and word pairings.
Although the device is useful in offline environments, Burns struggled with accessing social media at first (most laptops pose accessibility issues for individuals with disabilities).
“Julie came into my office one day and wrote on her device, ‘I want to be on Facebook,’” Caron said. “So, Julie really impacted my life. This moment was one of the reasons I wanted to come to Penn State and try and change outcomes for individuals with complex communication needs.”
In collaboration with Janice Light, an international leader in AAC research, Caron studied how individuals with CP access social media with their AAC devices. The results of the study showed that as social media has pervaded our society, many people with communication disabilities have been left behind due to technological barriers.
“Traditionally, the focus of our goals has been for face-to-face communication. But times have changed, and now we need to look at communication in a bigger picture,” Caron said. “There are online and offline environments, and in order to maximize communication outcomes for these individuals, both contexts need intervention.”
Because of this focus on face-to-face communication, AAC devices were typically not manufactured to be compatible with social media sites, which Caron has discovered is a much larger problem than initially expected.
“We are all what we would call ‘multimodal communicators,’ meaning you don't just use speech to communicate during the day — you use speech, you use email, you use texting,” Caron said. “For individuals with significant speech impairments, social media is giving them a channel that could bypass some of the challenges they have in other modes. Maybe face-to-face is really hard because of their articulation, so we're giving them another way to communicate and connect.”
For the study participants, social media expanded their communication abilities and helped them overcome common obstacles in day-to-day life.
According to one study participant identified as Mark, “One could say social media has opened a world of communication between people with speech impairments.”
And for Burns, part of the value of social media is being able to “talk to people all over,” and thanks to technology, she’s able to access Facebook from virtually anywhere.
“I have a device called the Accent that helps me write what I want to say, and then I send it to Facebook and that makes it easier to talk to my friends,” Burns said. “I also have disability apps that help me read Facebook on my iPad and iPhone. These devices help me use Facebook and make things so much easier for me.”
According to Kathryn Drager, associate dean for research and graduate education in the College of Health and Human Development and professor of communication sciences and disorders, Caron’s research is representative of an overall shift in how the AAC community thinks about technology.
“I think early on in the field the thought was ‘how can we create technology that will assist somebody with a disability to communicate?’” Drager said. “And we have begun to give more thought to ‘what do we already have available in technology that we could use in new and unique ways?’”
For Drager, Caron’s research into social media is not only novel, it has the potential to be life changing. For many with disabilities, access to social media allows for control over communication they might not have in other social settings.
“It really levels the playing field and lets people with disabilities be equals in a conversation whereas they aren’t always in that position outside of technology,” Drager said.
Because of this, Caron hopes her research will be the first step to promoting change in the field and technology behind AAC devices.
“Ideally, it will get to a point where it's a little more sophisticated and seamless,” Caron said. “We're not really there yet, but hopefully we’re going in that direction.”
For Burns, being able to access social media is helping bridge the gap between individuals with disabilities and the rest of our tech-focused world.
“One of the things I want to see in social media is to have more blogs for kids with disabilities so they can talk to each other,” Burns said. “I think kids who have disabilities often get left in the dark and they need a place to tell their stories.”
And if there’s one thing Burns hopes this research communicates, it’s that individuals with CP are just as entitled to social media as everyone else.
“We are normal people,” Burns said. “We can do everything, but sometimes just in a different "way."