Food is a basic need of all people. The degree to which people have access to food influences food choice, quality of life, health, and illness. We examined how physically impaired and disabled food shoppers from low-income households managed food provision for their families and the impact health and physical disabilities had on family food choice among those with limited resources. This qualitative study examined food access among 28 low-income rural, village, and inner city families in upstate New York selected by purposive and theoretical sampling. An unanticipated finding emerged that nearly one-half of participants, all primary grocery shoppers for their families, had a variety of health conditions and disabilities that limited food access and, in turn, healthy, affordable food. These findings suggest that physical abilities, agency, and context interact in food access.
Keywords: Disabilities, health, impairment, food, food access, low-income, food landscape, food insecurity, planning, health policy
Introduction
Food is a basic need for all people. The degree to which people have access to food influences the quantity and quality of food choices they can make, and this has an impact on quality of life, health, and illness (Drewnowski & Specter, 2004; Eikenberry, 2003; Krebs-Smith & Kantor, 2001; Nord et al., 2003; U.S. Department of Health and Human Services, 2000). A disability, as defined by the "Americans with Disabilities Act" ("Americans with Disabilities Act of 1990", 1990), means a physical or mental impairment (or being regarded as having such) that substantially limits one or more of the major life activities of such individuals. However, with the exception of the geriatrics literature (Lee & Frongillo, 2001; Roe, 1990; Smith, 1991; Wolfe et al., 2003; Wylie et al., 1999) and occasional international studies (Gullford et al., 2003), the relationship between physical disabilities and food access, although acknowledged (Campbell, 1991; Olson et al., 2004), has mostly received only cursory examination. Studies examining food access and health condition/status are more common. Stuff et al (2004) found an association between household food insecurity and self-reported health status in adults in the Lower Mississippi Delta region. A Canadian study by Vozoris and Tarasuk (2003) found that individuals from food-insufficient households had significantly higher odds of reporting poor/fair health, of having poor functional health, restricted activity, poor social support, and higher likelihood of chronic diseases and major depression.
Food access is the extent to which consumers (individuals and households), as agents, are able to obtain food for an adequate and acceptable diet; the power to exercise this ability is dynamic and derives from the amount and type of household resources (personal health being a household resource), structural rules (e.g., imposed on those with disabilities), and food landscapes available (Webber, 2005). Food access is individual, variable, and subjective. Food access is an important component of food security, defined as "access by all people at all times to enough food for an active, healthy life and includes at a minimum: (a) the ready availability of nutritionally adequate and safe foods, and (b) the assured ability to acquire acceptable foods in socially acceptable ways e.g., without resorting to emergency food supplies, scavenging, stealing, and other coping strategies" (Anderson, 1990).
The concept of a food landscape is used in a variety of ways (Guptill & Wilkins, 2002; Sobal & Wansink, 2007) and is partly adapted from the geographical concept of landscape (Duncan, 2000). We use food landscape to represent the apparent set of sources of food available in a particular place. Thus a food landscape would include supermarkets, restaurants, vending machines, street vendors, farmers' markets, and other sources of food that a person knows about in a specific locale (Holloway & Kneafsey, 2000). A food landscape is not an objective condition that is uniformly perceived and interpreted by all individuals. It is a relative term, varying for each individual and influenced by their resources, which include health and physical capabilities. What may be an ample food landscape for one person, offering healthful foods like fruits and vegetables, as well as affordable foods, may provide more limited options for someone with disability-related or health problems that limit their mobility. The research reported here examined how low-income food shoppers with health and physical impairments managed food provisioning for their families, and the impact these impairments had on family food choice when resources were limited.
Methods
This study was part of a larger project investigating relationships between low-income consumers and food retailers (Webber, 2005). In the work reported here, we examined food access and disabilities in an inductive, qualitative study that used ethnographic research methods and a grounded theory approach to capture the experience of grocery shopping. A pilot study and data from previously reported research about grocery shopping among low-income households (Crockett et al., 1992; Furey et al., 2001; MacIntyre et al., 1993; Morris et al., 1992; Travers, 1996) informed the research design and sampling. Sampling criteria and site selection were based on an interest in relationships between food acquisition activities of low-income households and the following: geographic location, seasonality, neighborhood characteristics, location of homes in relation to grocery stores, access to transportation; disparities in food access; and the influence of nutrition education and consumer knowledge on food acquisition and food access. The project was reviewed and approved by the University Committee on Human Subjects (UCHS).
Twenty-eight low-income rural, village, and inner city households were selected from three research sites in upstate New York using purposive and theoretical sampling. Sites represented a mix of major retail food store formats. Household selection criteria included income (<185% of the U.S. federal poverty line), at least one child under 18 at home, and some proficiency in reading and writing English. We recruited participants to assure differences in car ownership status, household makeup, and exposure to formal nutrition education. Local nutrition agencies (i.e., Cooperative Extension, neighborhood centers, food pantries, family resource centers, a migrant education program, and a church-based outreach program) provided access to potential participants. We did not seek disabled people or sample by health status. The interviewer communicated with participant households in person, by telephone, and mail two to ten times over two to eight months. All participants provided written informed consent.
The overall profile of household participants consisted of one male and 26 female household shoppers, as well as one married couple who shopped together; 22 white, 4 black, 1 Latino, and 1 black/Latina shopper. Households were drawn equally from urban, village/small town and rural areas. Half of the participants (14 of 28) had at one time participated in a nutrition education program such as the Expanded Food and Nutrition Education Program (EFNEP) provided through Cooperative Extension. Participants' ages ranged from 19 to 65 with a median age of 36.
The primary researcher conducted semi-structured interviews in participants' homes and, in several instances, at community agencies. Topics covered shopping habits, especially for fruits and vegetables, barriers to acquiring food, and attitudes toward local food stores. Participants kept a weekly log of how they obtained fruits and vegetables during two seasons in order to triangulate the interview data and to learn more about food acquisition practices over time. Additionally, we asked participants to comment about how and where they would prefer to buy produce and their broader attitudes towards food shopping.
Data Analysis
Interviews were audio-taped, transcribed, checked for accuracy, and coded and analyzed using the constant comparative method of Strauss and Corbin (1998). Nvivo 2.0 (QSR, 2002) software was used to manage the data. Eighteen of the 28 participants were interviewed twice. For some, major changes occurred between the first and second interviews that were associated with how, when, or where participants procured food for the household. For instance, several households had moved, and several others had gained or lost a car. These households undergoing significant change were treated as two units (Time 1 and Time 2) that resulted in a total of 37 separate household profiles.
Analysis of the data produced categories of phenomena associated with the process of food procurement and related concepts (e.g., food choice), their properties and dimensions. We first examined the relationships among each of these categories within each household and then analyzed the categories looking for relationships across households. Finally, we developed a "metamatrix" (Miles & Huberman, 1994) that combined all households and major categories, and assigned values to subcategories (e.g., health and disability status) thus providing a way to conceptualize the gradations of food access across categories and households. Credibility and trustworthiness of the data were enhanced by multiple interviews and contacts with participants throughout the study. In addition, the primary researcher discussed interpretation of early data with participants, triangulated shopping information from interviews with food acquisition records, and conducted periodic peer debriefing sessions with the research team. Negative cases were sought to provide validity to results (Mays & Pope, 2000; Patton, 1990).
Results
Three kinds of resources emerged as important for low-income participants (Table 1): human/social, material, and contextual elements. Human/social resources consisted of (1) the physical health and capabilities of the primary food provider — e.g., locomotion, stamina, sensory acuity; (2) social support networks made up of family, friends, and neighbors; and (3) knowledge-based skills learned either formally, such as in school or adult education, or informally from parents or mentors (gardening or shopping skills, for example). Material resources included: (1) money and other financial resources (e.g., store discount cards and food assistance — such as WIC, FSP, NSLP); (2) transportation (car ownership, access to public transportation or dependable rides to the store); and (3) time. Contextual elements were dependent on participants' location in space and time: (1) climate and season; (2) local physical environment (density, demography, public safety); (3) local food landscape — stores with accessible, appropriate and affordable food; and (4) location in relation to that food landscape.
| Human/social resources: |
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|---|---|
| Material resources: |
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| Contextual elements: |
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Data suggested that these resources functioned as a hierarchy, with financial resources at the top. If adequate resources had been available, families reported they would have exercised more options to access foods of their choice, either paying more for local, more expensive foods where available or spending money on a car, gasoline, or a ride to take them elsewhere to meet their needs. However, financial resources were limited, and a second tier of resources then became critical: transportation (including walking), social support networks, and location (particularly in proximity to grocery stores). Many households did not possess all second-tier resources either. These households demonstrated adaptive qualities, combining what they had with advantageous contextual elements to acquire at least the minimum groceries needed to function.
Adaptation to limited resources was only successful when the food shopper was able-bodied and/or in good health or, if not, only when other allowances could be made to compensate. Participants without access to a car, public transportation, or a network of friends or family for dependable transportation relied on their ability to walk to a local store, often walking home carrying groceries. These households reported purchasing more food during the summer or during good weather to stock up for wintertime when walking to and from a grocery store could be hazardous. Those whose physical health was compromised sometimes paid neighbors for rides to the store or had children take over many shopping duties.
Participants needed three characteristics of health and physical capability in order to access food without additional help. Stamina (walking to a store, walking through a superstore, or shopping several stores for the best buys), flexibility/dexterity (bending into deep freezers, stretching or stooping to reach shelves to retrieve food items), and strength (lifting and carrying bags of groceries to the car) were necessary to successful grocery shopping, particularly for those with few other resources. The degree of participants' stamina, flexibility, and strength interacted with other factors to influence their level of food access. Taking public transportation generally required more stamina than the door-to-door service of a private car or taxi. A trip by public transportation in some cases involved up to four bus rides plus a walk carrying groceries from the bus stop home in heavy plastic bags that cut hands. Strength was often needed to take advantage of bargain-priced foods that had to be bought in large quantities, such as "buy one, get one free" promotions.
An unexpected finding emerged from the analysis of health and physical capabilities as resources for food procurement. A high level of functionality was found to be a core resource for acquiring food, and many of the participants — 12 of 28 — had one or more chronic or acute health conditions or physical impairments that limited their ability to get food, even though they were their household's primary grocery shopper. The primary shopper was often designated as such because they were the only adult member of the household or because another adult's functional status was even worse than their own. In some instances, poor physical health led to impaired ability to walk, drive, or lift. For others, impairments such as blindness, deafness, and epilepsy created additional socio-environmental barriers such as social stigma, social exclusion, and transportation issues. Table 2 lists specific health and impairment issues in this sample. Chronic conditions resulting in impairment included bone and joint problems, swollen legs, epilepsy (resulting in exclusion from driving), and difficulty breathing. One participant was blind; another was deaf. Two participants were recovering from recent hospitalizations.
| Health and impairment status of participants (location) | Car | Age |
|---|---|---|
| spina bifida (small town) | No | 25 |
| severe asthma, hypertension, shortness of breath (urban) | No | 35 |
| blind (village) | No | 36 |
| bad back & hip (rural) | No | 40 |
| epilepsy (urban) | No | 41 |
| deaf pedal edema (village) | No | 50 |
| husband: heart bypass, diabetes, cellulitis; wife: arthritis (urban) | No | 58 |
| "bad legs" (urban) | No | 59 |
| automobile accident — hospitalized (rural) | Yes | 29 |
| recovering from major abdominal surgery (rural) | Yes | 32 |
| bad back, sometimes unable to drive (rural) | Yes | 37 |
| bad back, bad hip (urban) | Yes | 40 |
For participants who had to compensate for poor health or a physical disability, using other resources became necessary. Otherwise, they risked jeopardizing their health further or compromising their household's food security. With limited financial resources, households frequently made use of social networks for assistance — family, neighbors, clergy, and in one case a migrant worker organization. However, reliance on a social network required some participants to relinquish a degree of independence. Extended family members or neighbors who did the driving often decided where and when to shop and how much time to allow for a shopping trip. Some disabled participants who lived within walking distance of a store selling food (though not usually a supermarket) or near a bus line often preferred to remain independent and make do with what they could get to on their own rather than ask for, and rely on, the help of others. Sometimes they had little choice.
An urban participant who was not allowed to drive because of her epilepsy stated that she usually walked to a local grocery store. "Yes, we [epileptics] can get to the grocery store. But how do we get the stuff home? So that kind of limits where you can go, unless they're able to get a ride with someone."
One male participant with chronic back pain owned a car, but was not always able to drive. After remarking how much he missed the fresh produce of his native Puerto Rico he stated, "I'm trying to plan to go to farmers' market. But you know some days, me with this pain, I cannot plan … my pain around my day … 'Cause right now if I'm in pain, doesn't matter what's looking for me. I'm home in bed taking my pills." He reported that some days he could not bend to get into the car because of the pain. If he did drive on one of these days he said that he would choose a store for convenience rather than quality. "I like to go in and get out — the faster the better — where they've got everything that I need [snaps fingers], like this." He reported that some days were so bad that he stayed home and ordered pizza for the family.
A very independent, blind participant lived within walking distance of three grocery stores in a small village, a food landscape resource that made it possible for her to be self-reliant. However, the physical environment and the weather also influenced her choice of store. She stated that when she walked in one direction toward two stores, "It stinks because … about the next two-thirds of the way down there is no sidewalk and it's downhill and it's uphill and it's choppy and it's just nasty and in the winter with the snow and ice it's horrid, so I will tend to go [in the direction of the third store] just because it's got a better sidewalk."
Another village participant reported that the medicine prescribed by her doctor for stomach pain also made her retain water and caused her ankles to swell. "The doctor gave me the pills, but I shouldn't take them because my ankles swell right up. That bothers my feet. … So I have to stop [taking the medicine] until my feet are OK. … It's difficult to walk [to the store.]"
Poor health of a family member also influenced food access and choice among several participant households. One female farmer, mother to two teenaged boys and wife to a seriously ill husband, skipped planting the family garden in order to make time for other responsibilities. That year her family ate canned vegetables from the store and local food pantry in spite of a preference for the less expensive but more time-intensive produce fresh from their own garden: "I've been buying a lot of canned foods, I noticed, because it's a lot cheaper to buy it canned than it is fresh, … but I'm still trying to buy the fresh fruit for my kids." Two other mothers reported skipping grocery shopping for one or two weeks because they couldn't leave a sick child's bedside. As demonstrated in these examples, health of the food shopper and other family members influenced where foods were procured and what kinds of foods were included in the family diet. In most instances, poor health or disabilities led to limitations of food access and food choice.
Some adults with a disability or in poor health and with little visible social support or other resources reported relying on the help of their children. For instance, an urban participant with asthma, high blood pressure, and shortness of breath took her preadolescent children with her on the bus to a supermarket across town. She reported how she would find a seat in the store while the children retrieved the food items. She eventually became medically housebound, and the children would instead go to several neighborhood corner markets to shop.
"My kids go to the corner store to get canned stuff — string beans, corn, peas, collard greens in the can. I usually go out to get the fresh ones, but I wasn't feeling up to all that walking, so they will go to different stores and get canned goods. … I'm eating more canned now since I'm unable to get out, but as soon as I do, I'll be back on the fresh."
Both store choice and food choice were greatly diminished, and the family now spent more of its food budget for their groceries, too. A blind participant explained that when she moved to town only one store agreed to have staff spend time helping her pick items and usher her through the line: "But the other stores said they just didn't have the personnel or the time or the interest." Despite this disability, with help from her two young teenage daughters, she made use of her consumer knowledge and awareness of local resources to provide a wide variety of fruits and vegetables for her family. Her main regret was that she was unable to take advantage of store ads or clip coupons in the papers. She considered asking her children to do this on top of the rest of their chores too much to ask:
"I wish I could use coupons. That's one thing I need help with desperately. … I could save, I have so many friends that will go and get a $100 worth of groceries for 45 bucks … you can perform miracles with coupons." She reported that some stores now have sale items recorded directly in the cash register rather than requiring paper coupons, "so that is one blessing."
While pregnancy is not a disability, a pregnant participant reported facing many physical challenges similar to those faced by the disabled participants. She may not have been expected to lift and carry heavy loads or bend and stretch with the same facility as able-bodied non-pregnant shoppers. Yet, as a non-driver she continued to walk to and from the bus stop with bags of groceries. She resorted to similar solutions as others in the study as exemplified by having her two preschoolers help her carry the groceries home.
All of these examples reveal how health and lack of major physical impairments are important resources in the provision of food. Those with both a disability and limited income reported the need to compromise the quality of diet in order to provide food of any kind for their family. Relying on other resources to access food — social networks, composition of local food landscape/proximity to home, time available — sometimes forced these shoppers to sacrifice greater food choice including healthier food choices and more affordable food.
In several cases, participants reported that the necessity of getting food, despite risk of bodily harm and lack of other resources, led to a decline in health. One woman who lived in the country without a car told of her common six-mile walk to the store. By her second interview she reported that the practice of carrying heavy groceries long distances had put so much stress on her back, legs, and hips that she was forced to go to the doctor and into physical therapy. At this point, the family somehow found the means to get a car. She stated about the experience, "I got not even two miles up the road and I was all hunched over and just about in tears, I couldn't walk [any] more. I was just in so much pain from walking. So I won't walk that far again, not for anything."
Discussion
For the households in this study, we found that food access was a dynamic process that involved (1) the ability or capacity of a household or individual to obtain adequate food for a healthy, personally acceptable diet; and (2) a level of consumer agency, which depended on human and material resources at a household's or individual's disposal (e.g., money, transportation, health and physical capability, social networks, time), and contextual factors, such as location, climate, and availability of local grocery stores and other food outlets (food landscapes). Participants with lower health capital made use of other resources, such as financial capital (when available), time, and social capital, as well as contextual factors such as proximity to nearby food stores. Food sources that may have been less acceptable when a household had more resources (e.g., food pantries, corner stores) became an acceptable way to provide food when the principal food shopper became less physically able to shop. The primary criteria on which food access decisions were made changed as primary food shoppers moved along the continuum ranging from fully able-bodied and good health to disabled or poor health. The level and duration of impairment was often fluid. Food landscapes that adequately served those without impairments did not prove sufficient for those who did have impairments.
Several questions raised by the findings of this study are whether and to what degree poor health, impairments, and disability may influence food access, and to what degree food access and food security affect health and impairments. Stuff et al (2004) explored this in a survey of 1488 households throughout 36 counties in the Mississippi Delta region of Arkansas. Participants reported their mental, physical, and general health status. Although they fell short of declaring that food insecurity causes poor health, the authors favored this hypothesis over the reverse causation hypothesis where poor health (especially involving disability) increases food insecurity. Data from the study reported here suggest that causality operates in both directions. As resources, including health, decline for ill and disabled low-income food shoppers, household food landscapes narrow as well. Participants' narratives illustrated how dietary quality may be traded for expediency when few viable options to access food appear to exist for them. What and where food was chosen reflected resources that were still available: walkable local corner shops rather than distant supermarkets, canned produce (or none) instead of fresh produce; home-delivered food (e.g., pizza) — or occasionally doing without — when shopping was too difficult or took them away from a dependent's bedside. It is easy to imagine how these and similar situations continue the cycle of poor nutrition that can lead to or exacerbate chronic disease and further disability.
It has been pointed out that understanding the context in which people live is essential in order to understand the origins of health disparities (Joint Center for Political and Economic Studies, 2004). Food access for those with disabilities can be understood in terms of community-level food landscapes as well as individual physical capabilities. Informants in this study saw different food landscapes, not only according to their particular health conditions and physical capabilities, but also in relationship to resources such as transportation and social support. These additional resources expanded or constricted their interpretations of viable food landscapes. Disability and food access need to be examined as a spatial phenomenon (Gleeson, 1999) within the broad array of perspectives on disability (Albrecht et al., 2001). Disability influences the ability of people to perform social roles (Verbrugge & Jette, 1994), and the acquiring, preparing, and consuming of food are among the most essential of personal and household tasks. Various indexes of ability, such as the Instrumental Activities of Daily Living (IADL's) (Lawton & Brody, 1969) consider shopping, cooking, and eating, and, to the extent that an individual or household is unable to perform these tasks, may be associated with food insecurity and hunger.
Of interest is that the research of both Stuff et al (2004) and Vozoris and Tarasuk (Tarasuk, 2003) selected random members of participant households on which to assess health status. A strength of the research reported here is that all participants were purposively chosen because they held primary responsibility for acquiring food for their families. Yet even when charged with this responsibility, a large proportion reported health problems and physical impairments that limited their ability to carry out the task.
The findings of this analysis point out that coping with limitations in food access due to health and impairment lead some individuals to experience exclusion (and increased food insecurity) from their usual food landscape, others to develop techniques and networks for adapting to it, and still others to consider food choices beyond the "normal" (e.g., home-delivered restaurant meals and groceries). Coping styles may be connected to the types of barriers raised and the nature of a given impairment. The physical environment (transportation options, weather conditions) curbed those with physical impairments (difficulty walking, pain). Socio-environmental factors (availability of sidewalks in good repair, grocery stores designed to accommodate all shoppers) forced others to cope in different ways. Based on one's physical abilities and resources, each individual in this study appeared to operate in a different food world. These differences in the match between health, coping, and food landscape required varying forms of "foodwork" (Bove & Sobal, 2006) to be performed by individuals with various capabilities. For example, the foodwork involved in getting more than the most basic ingredients for cooking was simple for some but virtually impossible for others.
Understanding the role of health and disability in food access also requires recognizing a medical condition or impairment may be chronic yet dynamic. A household's set of health resources may fall far short of the norm. Vozoris and Tarasuk (2003) counted a particular medical condition only if that person reported that it had lasted or was expected to last for six months or longer. Our study looked at functional ability to acquire groceries from week to week. Many interviewed in this study represented a group whose fluid membership changed depending on daily pain thresholds, medication side effects, accident proneness, and the medical condition of dependent household members. Moreover, inability to access food was linked not only to functional status but functional status in relation to household finances (how long until pay day?), the weather (will it be icy today?), social networks (are we speaking to the cousin with the car this week?), changes in the local food landscape (local grocery stores transformed into dollar stores?), and access to transportation (changes in bus routes, car reliability, gasoline prices?). These problems are interrelated, contextual, and not easily studied by reducing them to a few limited, objective criteria. We found that even temporary disabling conditions, accompanied by lack of other household resources and adverse contextual factors, could considerably decrease food access one week or one month but not necessarily the next.
A public policy dilemma that arises is how we acknowledge, and then address, the subjective, contextual relationship between disabilities, household resources, and local food landscapes, that results in poor access to food. Another policy dilemma is making connections between urban/regional planning, which studies the built environment, with public health, two fields that traditionally have not had much connection with one another (Corburn, 2004). It is commendable that discussion has begun on how to promote healthy communities that encourage walking and biking (Curtis & Rees Jones, 1998), although the majority of this work does not include people with disabilities as an explicit focus (Kirchner, Gerber, and Smith, 2007). Designers of these new communities need to keep in mind that future residents, young and old, will have a range of physical capabilities, and that their food security could be jeopardized if measures to improve access for them are not included.
The findings of this study are based on a small number of low-income households from one region of the U.S. early in the 21st century, and, therefore, care should be taken in extrapolation to other groups, places, and times. It focused only on physical health impairments and disabilities. However, the findings suggest public policy considerations as well as planning interventions that would improve food access for all. Future studies designed to examine food access impairments are needed including research in different locations and with different samples and compositions including those focusing on specific types of disabilities.
Conclusion
In conclusion, it appears than many forms of impairments and disabilities decrease capacity to access healthy and affordable food and increase reliance on other household, material and contextual resources to overcome these limitations. An impairment or disability may decrease consumer agency when faced with structural forces that affect food access and its availability. Overall, we need food to build good health, but also, our level of health and disability can play a critical role in acquiring food for a healthy diet.
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