Foreword

Written by Food and Disability Studies Scholar, Elaine Gerber

In a colorful and playful style, Ed Roberts, wheelchair user and famous Disability Rights activist, and two of his assistants huddle around his stove where a few pots are visibly steaming
“Ed Roberts Cooking in Kitchen with Morning Attendants” by Patrick Connally, Bay Area artist

Why is Disability FEAST important?

This website is so tremendously important because the U.S. is experiencing a “dietary divide.” Research shows that people with disabilities encounter difficulties buying, transporting, and preparing healthy, nutritious, affordable foods, and at a rate greater than the general population. This has – and will continue to have – profound repercussions. Yet, until now, there have been very few resources compiled to help.

More specifically, people with disabilities in the U.S. are over-represented in poor communities where food insecurity is common. This means there are more disabled people in areas where people struggle to get enough to eat, and to eat well, than there are in the general population. Disabled people are also more likely to experience additional access barriers to getting food. And, they are more likely to experience negative consequences of being food insecure–due both to pre-existing conditions and their marginalized status in society.

Unfortunately, even in 2015, to be disabled in the U.S., for the most part, means to be poor. Some of the barriers facing this community are really issues of poverty, more so than they are of disability per se–such as the lack of good public transportation or the stigma of using food stamps. However, there are additional obstacles for people with disabilities…many, if not most, of which are caused by attitudinal barriers.

Stigma, plain and simple.

So, why do scholars and activists need this website?

Despite the greater likelihood that people with disabilities will experience food insecurity and suffer greater consequences from it, the topic is hardly on the radar of food scholars and activists. In other words, there is very little research that addresses this topic and thus, little attention given to the solutions that might redress the problem of disabled people not having enough to eat.  

Existing, standard measures of food insecurity–such as the use of “food deserts” to measure the distance to healthy food–do not adequately capture the barriers, including attitudinal ones, faced by people with disabilities in getting enough to eat. In general, the categories these scholars use to measure food insecurity do not take into consideration the lived reality of disabled people, and additionally, they are ableist in their assumptions of how people navigate their environments and use their bodies to shop for food, prepare meals, and/or dine and eat. What little attention this topic does receive focuses on physical barriers, but there are many more obstacles besides narrow aisles, high shelving, and a lack of ramps that serve as barriers to disable people.  

In my own research, for example, people who are blind or visually impaired have reported being kicked out of markets and accused of shoplifting because they “stared too long” at products or held them too close to their faces in order to try to distinguish what the item was. Blind and visually impaired people have reported that shoppers’ assistants put items into their carts that they didn’t ask for, swapping the requested item for something that could simply be defrosted or microwaved. Existing cultural assumptions (e.g., that blind people can’t cook) create attitudinal barriers and contribute to both the problematic nature of cooking for many individuals and the misguided nature of “help” that limits access to groceries.  

Such attitudinal barriers are not exclusively targeted toward blind people. Cultural assumptions that presume incompetence are widespread and apply to people with all kinds of impairments.

A stack of colorful flyers, the one on top advertising Disability FEAST with a picture of tortillas
Handouts for DisabilityFEAST | Photo by Elizabeth Layman

So, why do people with disabilities need more/better food information?

As a result, many populations of disabled people are not taught how to cook in general, let alone how to cook particularly for their body and its needs or according to its limitations. The widespread cultural assumption that links “disability” with “dependency” means that disabled people are not taught adaptive cooking techniques or that others assume they won’t need to figure out how to menu plan for the week. As a result, disabled people are more likely to eat a “diet of convenience” (that is, pre-packaged and processed foods and “fast food”) than the general population…and to have worse health outcomes as a result.

Disability activist and scholar, Harlan Hahn, once quipped, “All cultures have their own food. If there’s a disability culture, then its food is fast food.” Foods that are easy to prepare and acquire are often also the same ones that deserve criticism for their nutritional deficiencies. Disabled people eat mostly foods with a lot of added salt, sugar, and preservatives. This “dietary divide” has profound consequences for people’s well-being, longevity, productivity, pleasure, as well as mental and physical health. And, many negative health consequences that are presumed to be functions of disability are actually secondary outcomes that result from poor diets.    

So, why is this website important? (Have I not given you enough reasons already?!)

This website, a clearinghouse really, is important because “eating well” is important and for reasons that extend beyond health. People eat to be fed, but people also eat to break bread together. As an anthropologist, I am interested in food as more than just nutrition. Culturally speaking, food is hugely symbolic and serves profoundly social purposes. I believe the “food issue” is crucial because it delineates boundaries around inclusion: it has direct and significant consequences for the sociality, networking, and identity formation that accompanies eating.

For one, food issues may highlight the nature of inclusion and exclusion that surround disability. People with disabilities –because they are perceived as “difficult,” “eccentric,” “depressing,” and many other negative attributes– often are not invited to the table. In the process, these social designations become inscribed as attributes of the body; socially constructed categories (e.g., being excluded, not valued) become associated with the impairments themselves. Thus, eating serves as a way to define the boundaries of who is included and, consequently, who is or is not considered “disabled.” This process needs to be better understood, as it can contribute to the theorizing of disability as a social and cultural construction.

For another, people with disabilities often are limited from the sociality that surrounds food and makes us human, whether this is a holiday party, business networking lunch, or informal get-together. This exclusion can lead to negative secondary health conditions, such as depression (from social isolation) and/or further economic disadvantage. Social isolation remains one of the greatest problems for the disability community. Full “cultural citizenship” cannot be achieved until disabled people have access to the same social resources as their non-disabled peers.

Lastly, whether we like it or not, consumption has become intimately entwined with identity in late capitalism. Food, as a centerpiece of consumer culture, has become a relatively new and important marker of class status and elite identities (for example, being a “foodie” or a “locavore”) that are off-limits to many disabled people. While this may seem a less consequential issue than nutrition or sociality, it is significant for the disability community. The unfortunate reality for many people with severe disabilities–because they continue to live in institutions and/or are dependent on caregivers–is that they often have no control over what they eat, when, where, and with whom, let alone the opportunity to create an “adult identity” by being able to make those food choices themselves. Simply put, lack of control over food reinforces what Paul Longmore considered the infantilization of disabled people, by reinforcing their status as dependent, “perpetual children.”  This is not just abstract theory: the unfortunate reality for many disabled people is that admitting you have trouble feeding yourself means risking institutionalization.

Two round tables are pulled together, so that seven friends, all with varying impairments, can share a lunchtime meal together
Breaking bread together is vital in any community | Photo by Elizabeth Layman

What are my hopes for this website?

That it generates interest in food, cooking, and eating for many people with disabilities who maybe hadn’t thought that this was something within their reach. That it provides a valuable, much needed resource for people with disabilities themselves and for those who work with them, so that consumers who come into contact with various sectors of the rehab profession or helping individuals will be taught these important life skills. That food scholars and activists will take note and begin to include the concerns of disabled people in their mapping and measurement efforts, as well as in their creative solutions to food insecurity.  

This website is a far cry from the body shaming and ableist advice that frequently accompanies health advocacy. Eating well is not about dieting and restrictions. Eating well should be about that happy feeling rushing through your body when you’re hungry and you bite into something delicious and about the pleasure that comes from being able to feed other people and break bread together. It’s about joy and community and love.

In solidarity,
elaine


Elaine Gerber is an Associate Professor of Anthropology at Montclair State University in New Jersey. Prior to joining their faculty, she served for five years as the Senior Research Associate for the American Foundation for the Blind (AFB) and taught in the graduate program in Disability Studies at the City University of New York (CUNY).

A light skinned woman with glasses and curly, long, brown hair smiles at the camera
Headshot of Elaine Gerber | Used with her permission

She received her Ph.D. from the University of California, Los Angeles and her B.A. from the University of Michigan. (Let’s Go Blue!) She is a former member of the Disability Studies Quarterly (DSQ) editorial board and served as a Guest Editor for a DSQ Special Theme Issue entitled, “Eat, Drink & Inclusion: The Politics of Disability & Food” (Summer 2007).

Her current research includes issues related to food insecurity and disablement; audio description and blind theater; and the cultural construction of disability. Her earlier work also centered around culture and the body, particularly in the area of women’s reproductive health. More info about her work can be found by following this link to her profile on the Montclair State University website.

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