Community Vision
Innovations are never exclusively about functionality, but also about meaning. Innovations are meaningful when they speak to users’ culture and values. For example, people in eastern Kentucky experience cancer as a shared, rather than individual disease. Therefore, distress monitoring tools that conceptualize “distress” as extending beyond the individual patient may be especially meaningful to people in eastern Kentucky.

 The Cancer
In Appalachian Kentucky, cancer isn’t just cancer, it’s “the cancer.” The use of the definite article lends a sense of familiarity and identifiability. In the case of a “mass noun”–a noun that refers to an undifferentiated quantity–like “cancer,” the definite article gives the sense of inclusiveness, similar in meaning to “all.” 

 When Appalachians say they have “the cancer, their way of talking illuminates a unique, regional way of thinking about cancer. Cancer is familiar in Appalachian Kentucky, which has one of the highest cancer incidence rates in the nation. It has affected almost everyone, if not personally, then through the experiences of loved ones. One cancer survivor we interviewed teased out another sense of “familiar,” explaining how the effects of the disease permeate entire families:    

“When you have the cancer, a disease like cancer, it is a cancer that the whole family gets. It’s not just the patient because everybody is dealing with it” (Mary, breast cancer survivor).

So, “the cancer” is familiar because it is both ubiquitous and shared. “The cancer” is also a universal cancer: it is not a particular diagnosis, but a universal experience that all patients and caregivers can relate to. Indeed, Appalachians have been shown to overestimate their risk of getting cancer, probably because of higher rates of cancer incidence and mortality in Appalachia and local storytelling traditions. Furthermore, this experience is holistic. Having “the cancer” means not just having a diseased body, but all that comes with it in other realms of life.

These insights about how cancer is thought of as a shared disease in eastern Kentucky are important for understanding “distress” because one person’s illness may cause distress for their entire family. Innovations that take into consideration local understandings of distress—and other key concepts—could be more meaningful to users, and therefore more useful.

Community Strength
Innovations that integrate into existing patterns of behavior and existing social structures are more likely to be adopted and used. In Appalachia, cancer patients rely not only on immediate family but on extended “church families” and “work families” to help with practical aspects of care. This suggests that solutions to symptom management in Appalachia will be more successful when targeted to extended communities of caregiving.

 How to help in Appalachia
Sick people need help, and this was a key theme for the participants we talked to. When it comes to help, two important sets of Appalachian values can be in tension: while Christian values suggest that helping others is good, local values about being self-sufficient suggest that receiving from others is shameful.  

One of the ways Appalachians resolve these competing values is by blurring the line between self and family. As one cancer survivor put it, “When you have the cancer… it is a cancer that the whole family gets” (Mary, cancer survivor). In Appalachia, one’s family is considered an extension of one’s self, so that receiving “help” from a close family member is not considered shameful. But many participants extended the “family” metaphor beyond their blood relations, thereby expanding the realm of possible helpers. We heard many examples of blood families, but also “church families” and “work families” rallying around a person in need.

Help from immediate family members
Patients and survivors described with some reverence the practical help they received from close family members. Much of this help was intimate, taking place in private spaces and involving private rituals. The intimacy of caring for a sick person or being cared for is one example of how the need for help blurs the line between self and other. Hazel described her sister’s dedication to helping her at every moment. An anecdote about a prank her sister played, by videotaping her while she was medicated and praying, made a lighthearted comment on the invasion of privacy that comes with being sick.

“I think what touched me more than anything with [my sister] was that she stayed up… she missed work at all three jobs the whole time I was in the hospital. And never left my side. She slept in there in a little hard couch, when I’d moan or groan she’d get up and see what was wrong with me. Now she did videotape me, which was very bad of her, they give me all the pain medicine they could and, she videotaped me praying” (Hazel, cancer survivor).

Several patients mentioned practical help they received consisting of records-keeping and the management of information. In these examples, the line between self and other is further blurred as caregivers served as the very memory and voice of the patients they cared for. These examples also show how the skillsets of family members may be recruited in the service of a patient, and become a form of capital that can be leveraged in institutional settings.

 “And my wife is an engineer by vocation as well. And she had just been made project manager over a 300 million dollar project. So for her to be there with me, day in and day out, just was not feasible. But one of the things she did, she managed my healthcare like a project… Medications, every medication I took was documented. If I had any kind of side effects, it was documented” (Wayne, cancer survivor).

 “And my son in-law is a pathologist so he keeps up with the tumor board councils… Very fine, and my daughter that passed away was a cytologist and histo tech. She knew of all the cancer, the kind that I had, and the prognosis. She would tell me about my treatment that I would be taking. Not that I just miss her from being gone from my daughter, I miss her as the information I needed” (Penny, cancer patient).

Help from church families and work families
Patients also received practical help from their “church families.” As Claire explained, when your church family helps you, it is an “offering” that is acceptable to take. “Offerings” are contrasted with “charity,” which is not acceptable. The distinction between an “offering” and “charity” depends on who is giving it and the meaning behind it.

 “I know a lot of people are too proud to ask. Because they feel it’s charity…But if it’s from your family or a true friend or from your church family, believe that it’s a true offering and it’s not charity. They really mean it. Take them up on it” (Claire, cancer patient).

Mary described some of the practical help she received from her church family:

“Now for the chemo, usually a person from church would take me because you have to sit there for three hours and [my husband] just couldn’t take off work all the time for that. I was very fortunate to have a really good church family to help through all this and they brought meals to the house and things. But it was, I was very thankful for it” (Mary, cancer survivor).

 Some participants extended the family metaphor to their places of work. Mary described the fundraiser held by her “health department family.” 

“[My husband] had taken off so much work for my surgeries and everything, so we just … I was just very fortunate to have my church family and my, actually my health department family, did a fundraiser, and raised the money for me to buy my anti-nausea medicine. Because my insurance, even though I had insurance, I was still, I forget it was like $300 a prescription every time I had to go for treatment” (Mary, cancer survivor).

Insights about the stigmas attached to receiving certain kinds of help in Appalachia present an opportunity to reframe how innovation projects distribute resources or implement designs. In Appalachia, for example, leveraging the “family” metaphor, reframing “help” as a “blessing” or “offering,” and leveraging values of work and reciprocity could improve adoption and longevity of solutions.

Community Initiatives
The three telecommunications co-ops we visited in eastern Kentucky were especially remarkable in their dedication to their extended communities. Each of these providers engaged in grass-roots organizing to bring broadband and other services to their communities. As one co-op CEO said, institutions in eastern Kentucky tend to be very “community minded” rather than profits-oriented.

 One of the co-ops had sponsored, in collaboration with the county public library, a “virtual living room” that would provide telemedicine infrastructure to connect local veterans to doctors at the VA in Lexington. The co-op contributed equipment and a free gigabit connection to the library, and the library provided the space.  This co-op also extended a connection to a local hospital, which provides telehealth services to local schools.

Another co-op established a charity organization that would remove older copper cable and sell it for a fund to help community members with everything from water heaters and gas cards to funeral expenses and Christmas presents for kids. The CEO explained that the “guys” in the field often see needs when visiting people’s homes and can tap the fund to provide for any need they see. Like community health workers, telecom workers are some of the few people to enter the homes and private property of folks in extremely rural areas. But they are also trusted community members. As this co-op’s CEO put it, “I thought the telephone man was a part of my family growing up.”

The co-ops had also collaborated with community members and other organizations to create economic opportunities in eastern Kentucky; this was seen as one of their most important contributions, and the one of which they were most proud. Teleworks USA is one program that was started in 2011 as Kentucky Teleworks by the eastern Kentucky Concentrated Employment Program (EKCEP) as a part of the American Recovery and Reinvestment Act (ARRA). Working in partnership with PRTC, other ISPs, local governments, the Appalachian Regional Commission, and the US Department of Agriculture Rural Development, Teleworks USA now has eight hubs in Appalachian Kentucky.

 Challenges in connectivity
For telecommunications companies in eastern Kentucky, cost is one of the most significant barriers to expanding service area. Given the difficult terrain and the distance between homes, return on investment is low. Other practical challenges to improving connectivity include pole-attachment negotiations, complex local politics, and cost to consumers.

Additionally, we found in interviews with community partners that broadband access is seen primarily as an economic issue in Appalachian Kentucky, and references to the possible relationship between broadband and health did not organically emerge in our interactions with Kentuckians. “The economy” is the central issue of concern to Appalachians when talking about their region’s need, and public discourse surrounding broadband has focused on its potential to spur economic revitalization. Reframing broadband as useful in ways that go beyond the economy could inspire more communities to work toward expanding connectivity.

The Future is Local
Community powered projects lead to innovations that are not only meaningful and functional, but also adaptable as times change. Community powered projects also help cultivate local networks of dedicated individuals who can sustain initiatives over time. In Appalachia, sustainability has been a major challenge for many development initiatives that have taken a more top-down approach.  

“Aw, honey, you give those to someone who really needs them”

In each county I visited, residents described neighboring counties as “even poorer.” In Johnson County, I learned that Martin County is “the poorest in Kentucky.” In Martin County, I learned that Clark is “the poorest county in the nation.” In Clark County, I was told I “wouldn’t believe” the state of things in Laurel County. Residents consistently denied poverty as a feature of their own communities, while displacing it on others. What was this about?

 Statistics about poverty and other kinds of deficiencies are often relied upon for distributing resources in development and modernization projects. The “poverty is elsewhere” narrative is used by Appalachians to refuse resources, resisting would-be developers. Aside from diverting agents of outside development projects, like me, I heard several stories from community partners about their inability to distribute resources even in their own communities.

 One community partner told a story about a program to distribute cash cards for prescription medication, but people would not accept the cards. Another community partner told a similar story about her participation in a program to distribute shoes to school children in her home county in eastern Kentucky. Voicing her own neighbors, she said she heard the same refrain over and over, “Aw, honey, you give those to someone who really needs them.” In the local vernacular, this attitude is often described as “pride.”

The “poverty is elsewhere” narrative may be interpreted as a collective strategy to live by Appalachian values of self-sufficiency and working hard for independence. The narrative allows Appalachians to maintain their distinctly local approaches to modernization, and to maintain local control over the way resources are distributed.

 In Appalachia, there may be resistance to modern development if it could threaten local values, but, at the same time, there is recognition that development projects could restore economic independence to Appalachia, an important regional goal. Development projects face the challenge of navigating this space between tradition and progress.

Both rural and modern
Transportation was cited as the number one challenge to providing cancer care to rural patients by almost every community partner we talked to. Beverly, the director of a non-profit organization dedicated to helping cancer patients access resources, spoke extensively of the practical problems of providing transport to patients. Her organization has experimented with gas cards, home visits, and even transporting patients themselves. But each strategy has failed for various reasons. Addressing transportation challenges in Appalachia is central to improving healthcare but could also be seen as threatening to local values.

 The modern highways that improve safety and access to resources also erode the seclusion valued by many eastern Kentuckians. In the mainstream development perspective, rurality is a burden that needs to be “compensated for” or a “penalty” that requires “paying a price.” This perspective poses a threat to traditional Appalachian values because it rejects the possibility of a place that could be both rural and modern. In Appalachia, rural life is seen as having intrinsic value, which should be enhanced through, or preserved despite, modernization.