“My birthday is coming up,” Caroline’s beaming face betrayed her excitement, even as the monotone voice came from a communication device perched on her lap. As her fingers moved swiftly across the device, Caroline Smith, a spirited 30-year-old resident of Chester County, Pennsylvania, spoke to Re:Set about her experience with augmentative and alternative communication (AAC) devices like the Tobii DynaVox T-10.
“I use it mostly at home and to talk to my mom. When I go out, I use it to order food,” Caroline told Re:Set. The DynaVox device enables Caroline to select preset, pictorial buttons and input text which is translated into speech and relayed through built-in speakers.
For Caroline, AAC devices are not new. At the age of 13, she was diagnosed with 1p36 deletion syndrome, a congenital genetic disorder which often results in moderate intellectual disability, delayed growth, limited speech ability as well as hearing and vision impairment.
Even though a formal diagnosis came later, “we knew from an MRI performed at age three that her brain was formed differently…and that she had limited speech,” Caroline’s mother, Janet, told Re:Set.
Caroline has benefited from early intervention, including occupational, physical, and speech therapy since age 3. She attended the Vanguard School in Paoli, Pennsylvania, a specialized school that offers individualized pathways, comprehensive education and integrated clinical services for students with learning differences of varying levels.
“It is the Vanguard school staff who deserve credit for teaching Caroline how to read. Small class sizes guaranteed individual attention to every student and individualized education plans (IEPs) were our key to meeting Caroline’s needs,” Janet told Re:Set.
The Vanguard school had speech therapists, occupational therapists and physical therapists on staff who met with Caroline on a daily basis. “To track, monitor and improve her use of the DynaVox device, a one-on-one aide was hired by the school district upon our insistence when she was around 13,” Janet told Re:Set.
The device transformed Caroline’s ability to communicate with others. Without it, Caroline would have stuck to telegraphic speech, simple sentences that wouldn’t truly express what she wanted to communicate. She would limit herself to phrases like: “I go restaurant.” Using the device, however, she has been able to input details and say: “On Saturday, I went to [a restaurant] and got a sandwich.” The device has given her agency and freedom, yet it has its own trade-offs.
The device transformed Caroline’s ability to communicate with others.
“Unless you are in a table-top classroom, it is difficult to use it. And then, you have to have an interlocutor [who works with the user to move past telegraphic speech and explore different features of the device],” Janet told Re:Set. Fortunately, in Caroline’s case, this role has been enthusiastically adopted by her speech therapist, Karen Collins, whom she has worked with closely over the past eight years.
Caroline currently resides in Camphill Village Kimberton Hills and continues to meet with Collins on a bi-weekly basis. As a non-profit organization spread out over 432 acres in Chester County, Pennsylvania, Kimberton Hills is a beautiful residential community of over 100 people with and without disabilities who share their daily lives in activities like “dynamic farming,” gardening and handcrafts.
While she doesn’t particularly enjoy farming, Caroline takes an interest in playing softball with other Kimberton residents, working on puzzles or going on walks during her free time, and borrowing books from the main library. Occasionally, she goes out with a coworker to the local YMCA for swimming. Caroline’s rambunctious nature and hearty, unrestrained laughter makes her a popular addition to the Kimberton community. However, a vibrant community life has come at the expense of Caroline’s use of the device.
At Vanguard, all staff and teachers were trained in using the device, but at Kimberton, technology usually takes a backseat to traditional methods of communication. The priority is to engage with the environment and focus on activities that foster greater human interaction, such as gardening or pottery.
“Caroline has so much potential, but because of the constraints that are imposed by the [educational] philosophy, the use of technology on that campus is limited,” Collins told Re:Set. “When I have to transfer data or pictures, I struggle to even get a WiFi connection.”
The naturalistic pursuit of creating healing spaces for people with disabilities and prioritizing human interaction “prevents Kimberton from being able to see the [AAC] device as anything more than an intrusion,” Janet lamented.
As a result, Janet’s vision for Caroline of continuing to build her skills through the device has often been at odds with coworkers who live and work alongside Caroline in the community. “I would often show up to a living room full of [support staff] to train them on the device for 20 minutes. I already sort of felt like I was imposing, as everyone is so busy.”
Building community requires intention and attention to those around us, but technology can play an empowering and inclusive role for some in this process. For an eager and inquisitive communicator like Caroline, the role of technology, especially assistive technology, must be re-examined.
“As a speech pathologist, I fall in the middle, where I say: if you understand my student’s speech, then that’s great — that’s the goal. But if you don’t, I want you to use this augmentative device, because it gives her a voice,” Collins told Re:Set.
“I want you to use this augmentative device, because it gives her a voice.”
When it comes to reconciling these conflicts, Janet is still glad her daughter is in such an inclusive environment, despite the drawbacks: “We knew technology was the Achilles’ heel of these Camphill communities…but at least we got 24/7 coverage in a creative, beautiful environment with wonderful people who were eager to support Caroline.”
As for Caroline, she doesn’t miss using the device in her daily routine and relies instead on verbal communication with her friends. However, she has found new clever uses for it. In addition to using it during her weekly Skype sessions with her mother, Caroline takes her favourite stories and inputs them into the device, so she can listen to them at night.
Without a moment’s hesitation, Caroline sets the device down, points to herself, and exclaims in her own words: “Beauty and the Beast is my favourite!”
Mohit Nair is a researcher and project coordinator dedicated to addressing critical public health challenges in India. Through research and advocacy, he hopes to raise awareness around global health equity and human rights. Mohit holds a MPH from Harvard’s Chan School of Public Health and a degree in Biological Sciences from Cornell University.