MORGANTOWN, W.Va.—The coronavirus has driven us indoors and separated us from coworkers, friends and loved ones. That’s nothing really new for Sara Loftus, a West Virginia University geography doctoral student who is studying how to build an online community.
“Since I have worked from home for more than 20 years, COVID-19 hasn’t changed my day-to-day very much,” Loftus said in a remote interview from Huntington, where she cares for her adult son, who lives with life-threatening and technology-dependent medical conditions. “What it has done is allow a window into my world for those people around me.”
In caring for her son, which also involved weekly trips to Columbus for most of his childhood, Loftus found herself socially and geographically isolated. That experience motivated her to pursue a career in and study digital caregiving.
“My son’s medical and developmental needs prevented us from participating in many typical childhood activities. The internet became a place where I found opportunities for work, socializing and much-needed resources and information about my son’s rare disease,” Loftus said. “For me, these digital spaces became more real than the physical spaces in the community.”
Today, she is investigating how other caretakers use digital spaces for all types of care, including healthcare, self-care and parenting.
“I am working to understand ideas about co-presence, or how these digital spaces allow us to be in more than one place at a time. I’m also interested in understanding how care is expressed in digital communities, such as self-care and caring for others,” Loftus said. “Fundamentally, my research is about understanding how communities form and sustain themselves, especially over multiple places and times.”
Her research directly supports the nonprofit organization she founded in 2016, the Center for Supported Learning.
“My research is about understanding how caretakers use the internet to help them take care of themselves and the person they are caretaking for in their everyday lives,” Loftus said. “I want to know more about the relationships they build with other people online, what online places they visit, how they interact with those digital places and what their digital daily lives look like. I then try to make sense of the impact of this digital dimension on the rest of their lives.”
The organization works with neurodiverse youth and young adults with Autism Spectrum Disorder and other developmental disabilities.
“At the core of what I do is a concern with community and creating spaces that support people who are marginalized by society,” said Loftus, who is the executive director of the organization. “We do this by building collaborations with community organizations, institutions and other allies interested and willing to provide inclusive lifelong learning opportunities like urban gardening, fine arts, digital technologies, dance, theater, music and photography.”
The organization’s approach is built around interacting with community members and making connections with existing resources in the community.
“We facilitate the connections between existing support services and community activities to promote supported participation in an inclusive, community setting,” Loftus said. “Our vision is to promote a wholistic, life-span approach that allows for meaningful community participation for people with neurodiversity.”
She believes this work is more important than ever with our culture’s increasing and ongoing reliance on technology during the COVID-19 pandemic.
“This pandemic is a very important moment to study caretaking in digital spaces,” she said. “As is evident to so many people who have access to the internet, so much of our daily lives have shifted to these digital spaces.”
Loftus returned to WVU in fall 2017 to complete her doctoral degree, which she initially began in the mid-1990s but paused to focus on her family.
“Between then and now, I have raised three kids, established a business and formed a nonprofit organization. Communication technology was not as sophisticated as it is now – Zoom meetings weren’t a thing then! After much struggle to move forward with my degree, I realized that I had to put my children first,” Loftus said. “My work at our nonprofit motivated me to go back and finish my Ph.D. I hope to use this degree to develop a research agenda that will help solve the day-to-day issues of families with neurodiversity.”
Assistant Professor of Geography Maria Pérez is Loftus’s dissertation committee chair.
“Sara’s work is so important in reminding us that geography is much more than the actual physical places we inhabit,” Perez said. “Geography includes virtual worlds like games or social media sites, for example. It includes imaginary places, which may or may not have anything to do with reality but are still very important in impacting and even informing how we go about our day-to-day lives and make sense of the world around us. Sara brings a unique perspective to understanding these virtual worlds.”
Loftus expects to reach her goal of earning her doctorate in the next two years.
“One important part about returning to my Ph.D. is that I want to stress that it’s never too late to accomplish something – even if 20 years and life have intervened. I needed to put my family first, and that is why I had to stop my program all those years ago. But my ambitions were still important to me,” Loftus said. “My family has been incredibly supportive, as has the Department of Geology and Geography, of my efforts to return and finish this goal. My youngest son is a rising high school senior, and I joke that our college graduation ceremonies might conflict with each other!”
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