Food Studies scholarship has yet to make the notion of "disability" central to its analyses. At the same time, Disability Studies scholarship, with its long tradition of examining the social, cultural, and environmental nature of disability, and its emphasis on inclusion and exclusion, has yet to make food and eating a core focus for analysis. Articles in this volume address the site of intersection between these two fields, utilizing a variety of approaches and from a variety of disciplines.
Keywords: Food Studies, Disability Studies, Food, Eating, Disability
INTRODUCTION
Everyone eats... It's culture that teaches us when, what, where, why, how, and with whom we do so.
I have two hopes for this issue. The first is that it will inspire "mainstream" or not-specifically Disability Studies scholars of food from various disciplines to think about ways in which the social construction of food and eating may create disabling conditions and/or maintain disability boundaries or, for that matter, help to reduce and eliminate disabling and stigmatizing conditions. There has been little focus, thus far, within this growing body of scholarship on the meanings or categories of disability. Ideally this volume will raise awareness of new issues and complicate inquiry within social studies of food; that "disability" will begin to fall under its purview. The second is that I hope this volume sparks interest within Disability Studies on the relationship between food, impairment, eating and disability. Disability Studies is just beginning to explore the ways in which societies around the globe structure inclusion/exclusion, citizenship, and personhood through rules about food and eating, and ways in which local and global food systems, their politics and proscriptions highlight the very cultural nature of "disability."
Uniting these two fields is more than academic. It is both timely and essential. People around the world suffer from food insecurity and starvation in astronomical numbers (World Food Programme 2007). The affect of globalism on food access is felt particularly hard by disenfranchised populations, which would — by definition — include many disabled people. In times of emergency, whether it be Darfur, the Indonesian Tsunami (2004), the Pakistani Earthquake (2005), or after Hurricane Katrina, it would be much harder for individuals with mobility limitations (e.g., people who use wheelchairs, people with psychiatric impairments who may be too afraid to leave their home, individuals who are visually disabled given dramatically-changed environments) to access emergency food supplies than nondisabled individuals. Further research should examine political and social structures which limit access to food for vulnerable populations, including those most likely to be already disabled or to become disabled, if proposed solutions to the unequal distribution of food resources and malnutrition are to be effective.
At the same time, in the United States (and increasingly other western countries), there is a growing percentage of the population that is becoming overweight and obese (not to mention, sedentary.) (see Centers for Disease Control and Prevention 2007; ObesityinAmerica 2007). Again, the relationship between poverty and disability makes any work dealing with "the obesity epidemic" — given its association with low income — essential to include a focus on disability. Existing scholarship thus far mostly neglects the presence and influence of disability and its relationship to eating and exercising practices, even though disabled people are more likely to be overweight, obese, and sedentary, and suffer the health consequences that result from those conditions (see Kirchner, Gerber, & Smith 2007). Future work would benefit from closer attention to "disability," if programmatic efforts are to be successful.
Moreover, in western nations, who we are - our identity - is increasingly linked with what we consume, including and importantly food. Pop culture in the U.S. has seen the proliferation of food television (networks and shows), cooking reality and kitchen-renovation shows, cookbooks, kitchen gizmos and other merchandise for the "home chef" (including high-end appliances), the value of gourmand tastes and preferences for select cuts of meat, artisanal cheeses, out-of-season or exotic fruits and vegetables, among other items. Food is a new and important marker of class status. Whether a reflection of or in reaction to the importance of "foodie culture" (Barr & Levy 1985) the growing presence of food studies in the academy is further evidence of the centrality of "food as status" in U.S. culture. Therefore, examining who can afford to eat, what they can eat, and why is a valuable focus for studies of social inclusion, exclusion, and mobility. The intersection of food and disability is a topic whose time has come.
This theme issue illustrates a range of work being conducted at the intersection of food and disability. The articles in this collection utilize a variety of methodological approaches and come from a range of disciplines across the social science and humanities: political science, geography, anthropology, sociology, nutrition sciences, communications, journalism and media studies, literature, creative writing, memoir, and oral history, among others. While representative of a variety of disciplines and approaches, the articles in this issue address a number of common themes. Among them are issues of: food control and choice (particularly in relation to infantilization and independence); access to and training in the preparation of healthy foods; direct financial implications as well as hidden costs of disability vis a vis food acquisition (e.g., emotional toll, physical exertion, increased time); institutionalization and "food abuse"; obesity and nutrition; and, clearly, the cultural construction of disability.
Peer-Reviewed Research
The first set of articles are three social science, empirically-based research pieces: Webber, Sobal, and Dollahite's article examines access to food security for low income individuals in New York, many of whom have impairments; Davies' piece concerns issues with "learning disabled" children in Wales; Jones and Smith analyze media accounts of individuals with Prader-Willi Syndrome and social attitudes towards disability and obesity in the U.S.
The first of these, by Webber et. al., reiterates the importance of examining "disability" as a construct within food studies: because of the relationship between disability and poverty, any work addressing socio-economic issues — as this one was originally formulated — will, by default, also be dealing with a high prevalence of disability. This research did not intend to focus on disabled people in their design, yet to their credit, the researchers noticed the importance of disability in shaping constraints on food acquisition among low-income households in New York State. In their work they examine ways in which individuals negotiate competing concerns of food preference, health, and accessibility, within existing financial constraints.
This work demonstrates the direct financial implications of disability, either when the primary food shopper or when one person in the family is a person with an impairment. They document how people make trade-offs when faced with limited access, usually by throwing money at the problem where possible (such as shopping at a higher priced market that is more conveniently located), or by spending more time (after all, time is money in capitalist economic systems).
Direct financial costs are not the only way to understand the negative influence of disability on food access. Several other pieces in the volume expose the hidden costs of disability in terms of food acquisition. For example, Kudlick's work highlights the added emotional toll of "shopper's assistants" as the accommodation for blind and visually impaired people. (After reading this work, one can certainly see the added value of online shopping!) Lance addresses the social costs of disability, particularly for individuals who need assistance eating. She examines eating as a site of social exclusion: since so much sociality revolves around food, what happens if we don't have access to those situations? All of these articles further draw our attention to accommodations (and their costs), as well as just the "food." In so doing, they highlight the ways in which social and environmental barriers affect who gets to eat what, where, when, why, and with whom.
An equally important and related theme that weaves throughout many of the pieces here is that of "food choice." Control over food consumption — what kinds of food are provided, how much is available, at what times and under what circumstances — is a basic form of power. Several of the works here address this tension between control over food choice, the need for assistance or accommodation, and independence or adulthood. These works illustrate ways in which disabled people are perceived and maintained as perpetual children (see Longmore 2003). Davies' research — the second article in the volume — addresses this dilemma head-on.
Davies clearly articulates how access to "choice" for young adults with cognitive impairments and the control over their food consumption exercised by caregivers, perpetuate the construction of these individuals as 'children,' despite their actual chronological age. In western cultures, being able to feed oneself symbolizes independence and acts as a marker of adulthood. Difficulty achieving social adulthood for this population accentuates the stigmatizing aspects of a socially constructed, "disabled" identity. Her research reiterates the point that food practices not only reflect cultural assumptions, but define and maintain them. Not surprisingly, "food" becomes an area of conflict between these young people and their caregivers. These are issues similar to the experiences of other people with limited agency, such as people in institutions (see Moyer and Bail, this volume), as well as people needing other forms of food supervision (Ogata and Smith, this volume) or feeding assistance (Lance, also this volume).
The control and resistance elicited in Davies' research resonate quite clearly with other data from people with cognitive impairments (such as those recorded by Moyer). Others in this volume expand on how these early experiences of control/resistance to the institutionalization of food, often stay with individuals throughout their lifetimes and influence their future sense of "taste" (see both Moyer and Finger). Davies' work further highlights the cultural relationship between "taste" and independence/adulthood. She shows how individuals with cognitive impairments, as they move into early adulthood, maintain food consumption patterns normally associated with children. We learn that it is both the type of food consumed, and not just the amount of control exercised by others, which compounds the difficulty disabled people have in establishing an adult identity. For example, a parent reports that other people sometimes offered her son sweets when they were in public, a gesture normally reserved for young children. One of Finger's essays in this volume reveals that this is an experience that cuts across impairment types, and which reinforces the notion of disabled people as dependent(s).
Issues of food choice and control are also related to nutrition, food security, and obesity. Several of the works in this volume address food preparation/access as it relates not only to promoting independence, but also its consequences for health (see Davies, Bail, Moyer, Kudlick, and Webber et al). More specifically, foods that are easy to prepare or acquire are also often the same ones that deserve criticism for their nutritional shortcomings. Fast foods and pre-prepared foods often unnecessarily increase the amount of sugar, salt, and chemical additives in the diet; yet, these are the foods that are commonly consumed by disabled people.
The third article, research by Jones and Smith, address this intersection by examining the relationship between disability and accounts of "the obesity epidemic" in the U.S., and by questioning the construction of fatness as a disability. In media accounts of individuals with Prader-Willi Syndrome, Jones and Smith explore the construction of fatness as a disability and ways in which American culture views both fatness and disability. Not surprisingly, given the American value of bodily control vis a vis eating (See Bordo 1986), portrayals of obesity or "eating disorders" reinforce stereotypes of fat people as "deviant." Common stereotypes used to portray persons with Prader-Willi Syndrome are often those used to describe persons with disabilities and obese persons, even in the more positive media stories that they found.
The work of Jones and Smith is important on several other counts. One is that it contextualizes the construction of fatness and disability in American media within an international perspective. Another is that it critiques reports of "genetic determinism" or "naturalization": the idea that outcomes are predetermined by genes, rather than some interaction with environmental, personal, and social factors — a cultural assumption commonly associated with earlier, medical, and lay models of disability — has importance for expanding a disability rights perspective. Lastly, this article highlights the important role media plays in perpetuating negative imagery associated with disability. The disability community has been critical of media portrayals with good reason, arguing that in lieu of first-hand experience with disabled people themselves, media accounts serve as the primary source of the public's knowledge about the experience of and quality of life for disabled persons (Haller, Dorries, & Rahn 2006; Davis 2005). On the other hand, this article highlights the positive aspect of how media, and increasingly, online media has also served to help build a "disability community" (see Ragged Edge Online 2007).
Moreover, the work of Jones and Smith again highlights the centrality of food within Disability Studies: the individuals with Prader-Willi Syndrome described in their work would most likely be able to function independently if they did not need to have access to food strictly controlled at all times. This point, repeated throughout the discussions of institutions and community-supported living (Davies, Moyer, Bail, this volume), suggest that more theoretical and practical attention be given to policies surrounding independent living.
The next two pieces in the issue are examples of auto-ethnographic and phenomenological research.
Lance generates pilot data about the experience of people who need assistance eating, and raises questions about whether this can enhance the cultural capital of disabled people or generate "bonding capital" and community. In so doing, this article highlights the very cultural nature of "eating as independence" that is so pervasive in American culture, and contrasts the assumption that this is a given or "social fact" (Mauss 1954) rather than something which varies from place to place and context to context. For example, in Ethiopia, feeding one another reinforces the intimacy of social relations, and Lance demonstrates that even in the U.S., feeding one another can also generate and reflect intimacy, such as between romantic couples. She also addresses the problematic American cultural construction of assisted eating. Lance's article explores the issues of eating assistance for people who have minimal or no mobility in their hands; based on her personal experience and others', she suggests settings where assistance is socially acceptable or stigmatized, as well as strategies that individuals utilize to negotiate these settings.
The second article presents a very different account of "assisted eating." Saerberg's piece flips "assisted eating" on its head, by examining the disablement of otherwise able-bodied diners in a variety of "Dining in the Dark" experiences in Europe. This excellent work demonstrates — without question — the very environmental nature of disability. Moreover, he contributes importantly to theoretical understandings of both freakery and the gaze (Garland Thompson 1997, 1996; Foucault 1991). He also illustrates how certain contexts and settings facilitate more interaction between sighted guests and their blind servers, thus creating opportunities for public education or "bonding capital" (as described by Lance), through a process of mediation. There can be no clearer demonstration of the fact that "disability" is environmentally and socially constituted.
Saerberg should also be commended for bringing to the fore hidden costs of blindness with which the general public might not be familiar, disability discrimination among them. He writes that normal life for a blind person is far closer to a "freak show" than any 'Dining in the Dark' event could ever be. The public's attitudes towards and assumptions about the abilities of blind people are themes taken up in the following essay by Kudlick.
Cultural Commentary
The next several pieces are cultural commentaries, and include a variety of memoir, narrative, and oral history all of which include first-person recollections and voice.
Kudlick's piece recounts her time at the National Federation of the Blind's (NFB) Colorado Center for the Blind. In it, Kudlick tackles the issue of institutionalization from a different angle, and describes first hand the difficulties that blind and visually impaired individuals face in acquiring a selected choice of food. The "food control" issue is revisited: we see ways that a lack of access to preferred foods and a lack of choice over one's diet are systematically denied blind people, through the access "solution" of "shopper's assistants." This piece is important (as well as entertaining) because it complicates the understanding of "food-related" impairments; many people probably have not thought, or have mistaken beliefs, about problems that blind people experience with food and eating. Moreover, the problems described by her are not exclusive to people who are blind or visually impaired. This work makes it easy to imagine how wheelchair users, for example, might need assistance reaching items on higher shelves, or people who use support canes might have trouble carrying groceries. As such, it highlights a hidden aspect of disability discrimination that has yet to be written about extensively. Lastly, it underscores the abhorrent self-righteousness that exists around concepts of "healthy" and "natural" in the U.S., and one way these concepts affect the tradeoff between "convenience" (i.e., access) and "health." (See also, Webber, this volume.)
The second piece in this section reconsiders the issue of institutionalization, control, and food, but from the perspective of first-person narratives of people with cognitive impairments. (A transcript of this audio file is also provided.) Moyer's documentary recording of disabled people and some caregivers reflect — in their own voices — the horrors of mass institutionalization and the systematic use of "food abuse" by these institutions. The excerpt included here represents merely one topic in his larger audio documentary on state institutions and the movement for community integration, entitled Lest We Forget. (For more, see http://www.jeffmoyer.com). Drawn from oral histories with individuals who lived within Ohio's state institutions, their families, and caregivers, Moyer presents haunting interviews with people who experienced food "issues" while being institutionalized. Importantly, the excerpt gives voice to a population that does not normally appear in the academic literature, in their own words; these voices need to be heard, and remembered.
By contrast, Bail's article is important because it is written from the perspective of administrators who provided food services to people living in institutions, although in this case, in Australia. In so doing, it balances the "insider" or resident perspective found in Moyer (and Finger's piece, also this volume). Many service providers could still benefit from the lessons provided here, yet it reminds us that not all workers and administrators of institutions are evil nor do they create horrific scenarios from malicious intent. The experiences described herein highlight the many systemic institutional constraints that well-intended providers must work within and against. It also shows what is possible in terms of a "food revolution" that must accompany the change to community-based living. Bail raises questions about which aspects of these changes can be "institutionalized" into current anti-obesity efforts and "enhanced choice" movements that are part of community-based living, school reform, etc. For example, are there ways to improve mass-produced food to make it more edible, nutritional, and economical? This question is relevant beyond the disability community and recently has received national attention: the Oakland School District in California hired professional Chef, Ann Cooper, who admitted similar difficulties trying to improve nutritional quality, maintain "desirability," and still be severely budget-conscious (utilizing dated kitchens and equipment) in an institutionalized setting (Bilger, 2006).
Finger concludes this section with a compilation of three short memoirs, one of which reflects a personal and social history of institutionalized food. Her work certainly reinforces Bourdieu's directive that taste is culturally constructed (1984) and highlights the way that food serves as a trigger for memory. Finger recalls a friend met many years ago in an institution whose concept of mashed potatoes was thoroughly defined by that experience. Finger's writing also reiterates many of the themes mentioned above, in addition to that of "food choice," power, and institutionalization. She explores the issues of a dependent or "childlike" status for disabled people, and the nondisabled public's assumptions and stereotypes about disability. She also makes connections between disability and the environmental movement. Not surprisingly, she also entertains us.
Book Reviews
Lastly, there is a book review of The Omnivore's Dilemma by Michael Pollan. This book, considered one of 10 best books of 2006 by the New York Times (NY Times 2006), has made significant ripples in the slow food / local food movement in the United States. Basas reads it with an eye towards disability: what is the role of disabled people in the new "organics," sustainable agriculture movement? Is "green" disability-friendly? She concludes that Pollan still has far to go towards understanding a disability rights perspective.
CONCLUSION
The publication of this volume brings awareness of the lived experience of disabled people with regard to food and eating. This exposure is profoundly important as food studies grow within academia and under the media spotlight. Yet, there is so much that is not here. Much future research is still needed to understand the complexity of ways in which fields of food and disability intersect. For example, there needs to be work that defines the scope of the field. Any statistical data about the global population of persons affected by both disability and food insecurity is needed, as is the work that highlights the affect of a global, transnational economy on food security and disability. More cross-cultural research would be incredibly helpful.
This is a mainstream issue. Noticeably absent from this edition are the common so-called "food-related" disorders: diabetes, Crohn's/IBD (Irritable Bowl Disorder), food allergies — all of which, if severe enough, can prevent people from leaving the house or participating in food-related events. Given the cultural and biological importance of food, this includes nearly every social encounter: from the business lunch, to networking opportunities, to ritualized and religious events. People are financially and socially disadvantaged by an inability to 'break bread' together. Future research should measure the financial and social loss that results, as well as the impact of this discrimination in different settings, according to a variety of demographic variables, such as gender, ethnicity, and obviously, class. It should also explore the political conditions that structure these situations.
Disability Studies scholars specifically might be interested in further considering the impact that a food-centric perspective can have on topics, such as:
- The politics of end of life care, g-tubes, and food refusal
- The construction of unpaid, nurturing work surrounding assisted eating and food preparation as "care"
- How impairments alter social and cultural aspects of "etiquette" about eating
- Implications of disability-related dietary restrictions on social acceptance
- Expanding food choice for people living in group homes and institutions
- Ways visitability, access, and independent living are altered by a concentration on food
More general scholarship can also benefit by expanding research to include a disability perspective on a number of issues. For example:
- How global, capitalist approaches to food distribution, packaging, and cooking shape "bodies" around the world, including the construction of disabled bodies. Will GMOs create a universally disabled body? How are ideas of "naturalness" transferred from ideas about food to ideas about bodies (or vice versa) and what are the implications for disability?
- How social mores and stigmas around eating etiquette affect who is considered disabled around the globe. How are relationships, expectations, and choices around food contested and negotiated by disabled people?
- Ways in which the "gentrification of taste" affects certain segments of the population, such as people with severe allergies, people who use gastro-intestinal tubes to eat, people who receive "disability" and therefore have limited income, and others.
- Cultural analyses that focus on the artifacts of "foodie culture" and its targeted audience, to examine among other things whether these products are these limited to certain types of bodies, are accessible to all bodies, or create new forms of disablement.
Clearly there is ample opportunity to inform each other's work. I hope we continue to do so, and that this collection is the first of many such fruits.
References
- Barr A, Levy, P. The Official Foodie Handbook. Olympic Marketing Corp; 1985.
- Bilger, B. The Lunchroom Rebellion: An haute-cuisine chef goes back to school. The New Yorker, September 4, 2006.
- Bordo, S. Anorexia Nervosa: Psychopathology as the Crystallization of Culture. Philosophical Forum 17 (Winter 1986): 73-103.
- Bourdieu, P. Distinction: A Social Critique of the Judgment of Taste. (Translated by Richard Nice). London: Routledge; 1984.
- Centers for Disease Control and Prevention. Overweight and Obesity [cited May 23, 2007]. Available online from URL: http://www.cdc.gov/nccdphp/dnpa/obesity/
- Davis, L.J. Why 'Million Dollar Baby' infuriates the disabled. [cited February 2, 2005] Available from: URL: http://tinyurl.com/2yusdw
- Foucault, M. The Foucault Reader. New York: Penguin Books Ltd; 1991.
- Garland Thompson, R. Extraordinary Bodies: Figuring Physical Disability In American Culture & Literature. New York: Columbia University Press; 1997.
- Garland Thompson, R., editor. Freakery: Cultural Spectacles of the Extraordinary Body. New York: New York University Press; 1996.
- Haller B, Dorries B, Rahn J. Media labeling versus the U.S. disability community identity: A study of shifting cultural language. Disability & Society, January 2006; 21(1): 61-75.
- Kirchner, C.E., Gerber, E.G., Smith, B.C. Designed to Deter: Community Barriers to Physical Activity for People with Visual or Motor Impairments. American Journal of Preventive Medicine, 2007 (under review).
- Longmore, P.K. Why I Burned My Book and other essays on disability. Philadelphia: Temple University Press; 2003.
- Mauss 1954, Routledge; 2 edition (February 2, 2006) The Gift: The Form and Reason for Exchange in Archaic Societies
- NY Times 2006. [cited May 23, 2007]. Available from URL: http://www.nytimes.com/ref/books/review/20061210tenbestbooks.html
- Obesity in America. [cited May 23, 2007] Available from URL: http://www.obesityinamerica.org/geographic.html
- Ragged Edge Online. [cited May 23, 2007]. Available online from URL: http://www.raggededgemagazine.com/
- World Food Programme, United Nations. [cited May 23, 2007]. Available from URL: http://www.wfp.org/aboutwfp/facts/hunger_facts.asp
