by
Elaine Gerber, Ph.D.
Department of Anthropology
Montclair State University
August 2017
Note: a full copy of this summary is available for download:
#EatDis Exec Summary
Food insecurity is a significant problem in the U.S., and disabled people share a disproportionate amount of that burden.
Disabled people are over-represented in poor communities where food insecurity is prevalent (Coleman-Jensen and Nord 2013); this means that the percentage of disabled people living in “poor communities” is higher than in the population as a whole. For more about rates, read here. People with disabilities also experience additional barriers to obtaining appropriate nutritious food than do their non-disabled counterparts. And, they are also at greater risk for, and more likely to experience, negative health consequences from food insecurity than are non-disabled people.
Food insecurity, simply, is defined as “inconsistent access to adequate food for active, healthy living” (Nord, 2008). It is recognizable to most people as hunger (being hungry, starvation), but it can also cause obesity or “over-nutrition” (enough calories but inadequate nutrition).
In general, food insecurity is associated with mental health problems, cognitive and behavioral problems, chronic disease (e.g., diabetes, cardiovascular disease, hypertension, osteoporosis, and overweight /obesity), and overall poorer general health. Nutrition is also key in preventing certain cancers, additional impairment, and premature death. It is often assumed that negative health outcomes or “poor health” is a result of being disabled or one’s individual impairments, yet the lack of access to healthy, affordable foods contribute significantly to poor health. In fact, many of the most common and problematic “secondary conditions” for disabled people are related to nutrition and food habits.
In addition to medical problems, some consequences of food insecurity (e.g., obesity) have been shown to be a barrier to integrating disabled adults into the community.
This “dietary divide” is important because it perpetuates inequality based on bodily difference and reinforces stereotypes that harm disabled people. Better understanding of food insecurity and disability could lead to solutions that improve disabled people’s overall health, quality of life, and even social inclusion. Further, reducing food insecurity among households with disabled adults would substantially reduce the overall rate of food insecurity in the U.S. (see Coleman-Jensen and Nord 2013). Therefore, the issue of food insecurity is a concern for disabled people and their families, and should be a concern for everyone working to increase access to affordable and nutritious food.
Although there are multiple causes of food insecurity, the most direct and impactful way to improve food security and reduce the dietary divide would be to lift people out of poverty. In addressing these challenges, America must recognize that improving access to food for the most marginalized populations, which includes disabled people, will have health and economic implications that betters the nation as a whole.
#EatDis was a community-based, participatory research project about disabled people’s experiences shopping, cooking, and dining, which lasted 18 months and was based in New Jersey. The goal was to document the barriers and facilitators to food access, as well as additional creative solutions to those barriers used by disabled people themselves.
The data were gathered and analyzed by a diverse team, including myself, four undergraduates, and two community members. Four of us were white, two were African American, and one was Latina. Two of us had notable physical impairments and another two had psychiatric impairments. We also partnered with community groups of various kinds, who helped with input and recruiting, including local independent living centers, N.J.’s Department of Rehabilitation, several private agencies and direct service providers, as well as additional recruitment though a local soup kitchen and “snowballing” via personal networks. This work is also ethnographically grounded in the U.S. disability community, where I have worked for nearly 20 years.
The sample was intentionally diverse. Overall, 30 people were interviewed in-depth and many more provided online and other feedback [1]. Participants included: 12 people with mobility impairments, 7 with cognitive impairments, 8 who were blind or visually impaired, 3 who were Deaf or hard-of-hearing, 5 who identified as autistic or “neurodiverse,” and 3 who defined themselves as “caregiver dependent” (8 reported multiple impairments). Approximately 60% of the sample identified as female, and 20% was non-white. There was also distribution across urban, rural, and suburban environments, and by socio-economic status.
Both participatory (Wang 1999) and emancipatory methods (Barnes 2003) are instrumental to disability studies research. These approaches require that disabled people and their perspectives be included in the research process, and have been utilized here.[2]
All participants were interviewed face-to-face for an average of 2 hours and were paid an honorarium. Some also participated in a visual component (either traditional participant-observation, where team members accompanied them as they shopped, cooked, or dined, or modified photovoice, where they took pictures of these activities without the team). Interviews were audio-recorded, transcribed, and then coded utilizing MAXQDA (maxqda.com).
The analysis focused on themes related to the three food activities (shopping, cooking, and dining), as well as to barriers, facilitators, and “strategies” to food access. Barriers were defined as obstacles to access. “Facilitators” were anything that promoted access (including people, attitudes, technology, physical environments) provided by/in the stores or restaurants themselves. “Strategies” were creative work-arounds, developed or utilized by disabled people, and needed because barriers existed and no facilitators provided. For example, customer assistance representatives, known as “shopper’s assistants,” were coded as a facilitator, whereas bringing one’s own friend to the market to help shop was considered a strategy. The analysis also included numerous other dimensions, such as independence, stigma/discrimination, safety, inclusion, and empowerment.
Despite their incredible differences, most disabled people experienced difficulty accessing food. Some of this is due to financial constraints, but much is due to structural or attitudinal discrimination against disabled people. We also found disabled people to be incredibly creative as a result, and generated home-grown solutions to many of the barriers they encountered.
Although the study was not designed to answer which was the worst/most common problem for disabled people or how many people experienced which barrier (quantitative data), there are some insights from people’s stories that are noteworthy. Overall, people talked significantly more about barriers than facilitators (658 to 174 text segments, respectively), and strategies were mentioned almost as much as barriers (510 text segments). This suggests that disabled citizens still have a long way to go towards achieving acceptance and equality vis a vis food. People’s stories also indicated that attitudinal barriers were equally as problematic, if not more so, than structural barriers. Structural barriers (things like stairs, poorly maintained sidewalks, or limited public transit) may receive the most attention and seem more straight-forward to fix than attitudinal barriers, which often reflect deeply-held beliefs and inaccurate assumptions about disability. Here are some examples of attitudinal barriers uncovered in this project:
The project further documented a range of discriminatory behaviors that disabled people were subjected to, regardless of their type of impairment. Nearly every single participant interviewed could recount stories of discrimination, from verbal slights to physical assault, while shopping or dining in public. This is true for people who were employed and “middle class” as well as those struggling with poverty. Multiple people reported being thrown out of grocery stores for “shopping while disabled” (e.g., non-standard bodies/behaviors, such as blind people looking closely at products to determine what they were or autistic adults who were stimming, led to accusations of shoplifting).
“After I paid, I slipped the bottle (which was slim) into my purse, which was all I was carrying. As I walked out the door another store employee grabbed me by the back of the neck and hauled me inside and accused me of stealing the sauce, saying that she had seen me standing in front of the shelf for a long time. I was humiliated.”
“I am often bothered by store employees for taking too long to look at something or to put my groceries in a bag after paying. That happens most times when I shop, probably about 70 percent of the time.”
“I don't go to the grocery store anymore. When I did, I was either ignored or avoided when I actually asked for help from an employee, or treated like I was incompetent and shouldn't be out unsupervised -- with the patronizing tone, ignorant behavior and everything else that goes along with it.”
In addition to the overt and subtle barriers that people encountered around food, most participants personally struggled with how to balance the competing constraints of time, energy, money, and health. While this may be true for many Americans in our modern foodscape, it is particularly an issue for disabled people whose lives are complicated by fatigue issues, limited financial resources, the time it takes to do certain tasks, and/or specific dietary concerns/considerations. This "trade-off" was different for each person, given their impairment(s), living situation, financial resources, and other factors, but here are some examples of how it plays out:
“I usually just go hungry because the things I can eat are too expensive to keep around and I'm too sick during a flare-up to go buy special foods.”
“In the winter, I can't get out. I can't [be] independent. I can't get out to independently acquire anything, because of snow, because the handicapped spots are always full of ice and snow, and the sidewalks are impassable. …They actually tried to open a winter farmers market but it was up 2 flights of steps, so not accessible.”
“I've been told by a few people in my support group that going gluten-free a lot of times is helpful for inflammation, the inflammation from fibromyalgia. But I mean gluten-free, it's difficult to find inexpensive, so I don't.”
“Grocery shopping, it is very difficult. Because I’ll only be able to go at maximum twice a month, so I’ll have to really stock up when I do go. And that leads to a lot of packaged food because I can’t go to the grocery store more than twice a month. … it's just energy, because of my lack of energy and how much energy it takes to go to the grocery store, to do a whole shopping trip, that’s what makes it difficult for me.”
“I eat too much processed food, way too many refined sugars. Probably my sodium intake is far too high I think. I'm aware of it and I think within the constraints of pre-prepared food I do a pretty good job, but if I had the dream kitchen and energy to match, I would be preparing full meals.”
Importantly, most people had not been taught healthy “food skills” or much else about how to cook on a budget or according to the needs of their bodies, despite eating and cooking both being IADLs (instrumental activities of daily living). Some people were learning on their own, by reading cookbooks, watching videos online, and following cooking shows on TV. However, most of this is not specialized towards disabled audiences nor contains information about adaptive devices or techniques. More knowledge and opportunities to practice need to become more widely available to disabled people. Most disabled Americans are trying to cook in inaccessible kitchens (e.g., “standard” counter height, impossible-to-reach storage cupboards, flat-screen programming for ovens, microwaves, and other devices, spaces too narrow/small for a powerchair to fit in or turn) or in no kitchens at all.
“I can't reach the cabinets, so my oven is a storage spot and my dishwasher is a storage spot. So even if I could use those two things, I really couldn't because I'm using it to put plates in and other pantry items… the whole top ring of my kitchen, as small as it is, is not functionally usable.”
“Growing up I was in the kitchen the least of my siblings, just because the house itself wasn't accessible. Just the setup of the kitchen there was not particularly safe, you know, so it was probably wise of my mother to keep me out.”
“This is the first time in my life that I've ever interacted with the stove. …my OT…should have taken me upstairs to the kitchen that all the [adult] folks used and taught me how to cook or something…. Now, I have so much anxiety over having people over, and it's primarily because of the food. Like what am I going to serve everybody?”
Not being able to cook impacts disabled people’s health, as well as opportunities for sociality.
Further, being independent and making decisions for themselves – even unhealthy choices – was very, very important to the people we interviewed. They wanted, and deserve, the opportunity to create an “adult identity” – to decide for themselves what they wanted to eat, when, where, and with whom. Food was a central way by which people could assert their independence.
“Sometimes I don’t like to ask for help, even though I need it, even though I know it would make things easier… I just like to do it on my own, to prove to myself that I can do it.”
Lastly, although most disabled people encounter barriers to food access, some people participated in the #EatDis project because they like to cook. In fact, some people were amazing cooks. But even the more humble “food preparers” in the sample got satisfaction from food: they enjoyed providing for others, creating a sense of community, and took pride in their ability to cook and care for themselves. Food can be a source of memory, joy, and incredible pleasure. We all deserve this.
Below is more detail about the types of barriers, facilitators, and strategies that the project uncovered, as well as some additional resources. We hope that advocates will use these findings to develop initiatives that support disabled people’s access to food, and that individuals can learn new tips and strategies from this community of ideas.
COOKING
Cooking was problematic for many, in part because they had never learned much about how to cook on a budget or prepare foods “from scratch.” People may have learned how to make several dishes through various rehab or training programs, but not necessarily how to cook in general, to eat according to the needs of their body, nor to overcome their “fear.” Many participants mentioned fear (of burning or cutting themselves, in particular) as a barrier to cooking. People often ate processed foods and pre-prepared/packaged foods from groceries and restaurants, which may be “easier” and allow more independence, but which also contribute to poorer health. Many people were unable to cook due to inaccessible kitchens and developed strategies to cope with this, as they did not have resources to renovate existing spaces. For example, some people relied on friends or family to assist them with certain cooking tasks when they came to visit or used mainstream devices (such as slow cookers, or a scissor to chop instead of a knife) to facilitate their cooking. Here are some other examples of strategies:
Here is full list of cooking barriers, facilitators, and strategies.
DINING/SOCIALITY
Like cooking, dining has the potential to provide opportunities for social inclusion. However, it is hard to invite friends over to share a meal if one “doesn’t cook” or lives in a small apartment with little room to host people. So, going out to eat was important. It’s also expensive. Nonetheless, we found that many participants – even poorer ones – ate out at least one meal each day (including take-out), in part due to fatigue issues. People did experience poor treatment from some restaurant employees or inappropriate comments/behavior from the general public, which were barriers. Some also encountered segregated settings (seating) or were refused entrance if they used a service animal – both of which are illegal. However, they found that “advance planning” and frequenting the same establishment (once they knew a restaurant was accessible) were successful strategies. Blind participants mentioned using sighted guides for networking events and buffets as particularly helpful; many others discussed eating in advance of social events as a strategy. And, carrying food with them that they could eat “on the go” (like a granola bar) was mentioned by nearly everyone. Here is the full list of dining barriers, facilitators, and strategies.
Note: this list is far from comprehensive. If you think of other sources that should be listed here, please contact me so they can be added to the site.
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#EatDis social media (forthcoming)
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For more about the project, contact:
Elaine Gerber, Ph.D.
Associate Professor, Anthropology
Montclair State University
gerbere@montclair.edu
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NOTES:
1) Over 85 people with a range of impairments participated in a nation-wide online survey that was a “pilot” for the #EatDis project, and helped the team to develop questions used in the face-to-face interviews.
Return to #EatDis report
2) I would like to thank the many disabled people, and everyone else, who contributed informally to the conception and development of this project, and specifically to Marsha Saxton at the World Institute on Disability (WID), Corbett O’Toole, Corinne Kirchner, and Catherine Kudlick. Gratitude also goes to Carole Tonks at ACI, Marilynn Schneider at WAE, and Joe Amoroso of the NJ Dept of Rehabilitation, and of course to the Center for Community Engagement, the Department of Anthropology, and the College of Humanities and Social Science at Montclair State University for your support.
Return to #EatDis report
Data show nearly one-third (31.8%) of all U.S. households with food insecurity included a working-age disabled adult, and nearly 38% of households with very low food security included a working-age disabled adult (Coleman-Jensen & Nord 2013). (By comparison, 12% of households with no working-age disabled adults were food insecure.) Food insecurity is an issue even when disabled people are employed: over 20% of households with a disabled adult who was working full-time were food insecure. Further, data shows that “benefits” (SSI, SNAP) fail to sufficiently protect disabled people from food insecurity; both reduced earnings and increased expenses are responsible (Coleman-Jensen & Nord 2013). You can find a summary of this report here.
These statistics are incredibly valuable. Yet, they do not fully capture the extent of food insecurity for disabled people. One, they may underestimate the problem. The data above are self-reported so might not include people who have highly stigmatized conditions (such as cognitive or psychiatric impairment). As a result of internalized ableism or denial, mental health issues are often not disclosed, and many other hidden/non-visible disabilities are frequently underreported. Two, those data only include non-institutionalized adults, so they explain nothing about food insecurity for the many disabled people who are living in group homes, larger institutions, and nursing homes, or who are incarcerated, nor does it address disabled children or seniors. The association between disability and age is important here, as seniors represent the largest demographic of disabled people in the U.S. (U.S. Census 2012).
Furthermore, these statistics do not describe the qualitative ways in which disabled people’s experiences acquiring food is different from that of non-disabled people, nor does it address other aspects, such as cooking/food preparation or the inclusion/commensality that accompanies dining.
Return to #EatDis report
(Things that make shopping difficult or inaccessible, located in the environment or structure of the store)
Transit-related - Getting to/from the Grocery
Paratransit (specifically)
Time
Aisles
Location of Items / Difficulty reaching
No shopper's assistant / unhelpful customer service
Online
Other –
(Things that made it easier, more accessible to shop – provided by/in the store or market itself)
Market design
DISTANCE
ONLINE
(These are some tips, things developed and used by disabled people to make shopping easier and more accessible)
Miscellaneous:
Fear
Other (including impairment-related and personal issues):
Accessible kitchen
Someone else does it
Devices -- Mainstream/Stock items
Devices -- special “disability” items
Rehabilitation – formal or informal training
Miscellaneous
**See also “Facilitators” above, as some of these may also be strategies (e.g., having someone cook with/for you)
Learning
Modifying existing tools
Organization / Planning
Food preparation
Miscellaneous
Attitudinal (Discrimination-Stigma-Ableism)
Structural
Miscellaneous