Food and Disability Research

Food Insecurity and People with Disabilities in NJ

*Do you identify as a person with a disability?
*What is going to the grocery store or market like for you?
*How did you learn to relate to food?
*What makes it difficult for you to cook or prepare healthy food?

Have stories or a recent trip in mind to answer any of these questions? We would love to hear them!

Your collective stories can help us and other disability advocates learn about the food-related barriers for disabled people. This project is seeking people who would be willing to be interviewed about food access.  There will also be the opportunity to submit pictures about these topics.  Everything shared is completely confidential.  Participants would receive $25 for participating in the interview.

If you are interested in participating, please write or call us at....
email:  foodanddisability@gmail.com
phone:  973-433-6631

Thanks in advance to all of you!

More about the project:  This is a new community-based study, sponsored by Montclair State University, that wants to learn about people with various kinds of disabilities and food insecurity.  We are interested in the whole picture: access to groceries, cooking, and dining experiences...   Questions involve family traditions around food and whether people were taught to cook, how people with disabilities access markets and what makes it difficult to obtain groceries regularly, as well as experiences of exclusion in public dining situations.  Another facet of the study seeks to explore how this population cooks to their preference—food that is balanced for health, taste and cost (following today’s cultural demands). Lastly, our study surveys practical strategies and adaptive ‘in-kitchen’ solutions people with disabilities use and have found helpful.  The research design involves interviews and focus groups, and a "photovoice" component. 

Background:  Researchers have been studying food deserts in poor areas but have yet to include people with disabilities in their measurement efforts, in any large-scale, systematic or focused way.  This work is needed because people with disabilities are over-represented in poor communities where food insecurity is prevalent.  Also, people with disabilities experience additional access barriers to getting nutritious food and are at greater risk for negative health consequences of food insecurity.  This project will help to include the perspectives of people with disabilities in “food security” research.

Academic Research on Food Insecurity & Disability:
Food Studies scholarship has for the most part neglected the collection of data specifically about people with disabilities (PWDs) in the U.S. in several ways.  For one, there is little awareness about the needs of disabled people/PWDs by mainstream scholars.  For example, a recent 150-page report to Congress on the state of food insecurity does not mention the word “disability” once in the report, despite that their interest is in “subpopulations that may be particularly vulnerable to ‘access barriers’,” identified here as: low-income individuals, households without access to a vehicle; non-white populations; elderly individuals (Ver Ploeg et al 2009: 17).  While most standard survey instruments gather data on race/ethnicity, income level, and whether there are children present in the home, as well as other variables associated with food insecurity, they do not ask about, nor have space to record, the presence of impairments or disability status.  So, even though there are likely to be PWDs included in the sampling frame, the data cannot be analyzed according to disability status.  For another, these survey instruments also do not ask about “impairment,” such as whether one has bad knees, temporary migraines, or severe fatigue, which might also limit so-called non-disabled persons from taking a trip to the market or accessing sufficient groceries (Webber et al 2007).   

To take the matter further, my pilot research (MSU IRB #001490) has indicated that PWDs experience additional barriers to grocery store access.  For example, the presence of a market within one mile from someone’s home (in an urban area) would technically mean, according to the USDA, that this person is not living in a “food desert” (see http://apps.ams.usda.gov/fooddeserts/fooddeserts.aspx). However, if this market has a step at the entrance, for a wheelchair user, it de facto might as well not exist.  And there are many more barriers besides a lack of ramps and narrow aisles that serve as barriers.  People who are blind or visually impaired (B/VI) 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 face in order to try and distinguish what the item was.  Similarly, autistic adults (and others whose behavior is read by mainstream society as non-normative) have also reported experiences of discrimination.  This project will highlight the range of barriers that PWDs experience in accessing groceries.  

Despite the omission of PWDs from standard data collection instruments, and the additional barriers faced by PWDs that are not recorded, a recent USDA ERS study found PWDs are particularly vulnerable to food insecurity (Coleman, A. & Nord, M., 2013a).  In particular, the study noted that disabilities (sic) often lead to reductions in earnings and that PWDs often have higher costs (i.e., adaptive equipment, medical costs, etc).  However, it only briefly mentions that individuals with disabilities may also have difficulty shopping for food, preparing healthy meals, and managing food resources (Coleman-Jensen, A. & Nord, M. 2013b). These are aspects that our new research project examines in greater detail.  For example, it is clear from my previous work that there is nearly no training in how to cook within standard rehabilitation services provided to people who become blind or visually impaired.  Existing attitudinal barriers and cultural assumptions (i.e., that blind people can’t cook) contribute to both the problematic nature of cooking for many individuals and the misguided nature of “help” that limits access to groceries.  In my pilot work, for example, people who are B/VI have reported that shoppers’ assistants put items into their shopping carts that they didn’t ask for, swapping the requested item for something that could be simply defrosted or microwaved.  These assumptions, and solutions to redressing them, need to be explored further, as the population of people with disabilities in the U.S. is more likely than their non-disabled counterparts to be eating an unhealthy “diet of convenience” (i.e., packaged & processed foods and “fast food”). 

Furthermore, this Food & Disability research project explores the discrimination that exists not only in delineating access to grocery stores and markets, but also in people’s experiences of eating -- that is, in restaurants and people’s homes.  As an anthropologist, I am interested in food as more than just nutrition.  People eat to be fed, but people also eat to “break bread together.”  There have been numerous studies documenting the importance of sociality surrounding eating, but far fewer that look at this issue for people with disabilities (Davies 2007; Lance, 2007).  Nonetheless, these issues are important to examine for several reasons.  One, these issues 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, are not invited to the table.  And thus, eating serves as a way to define the boundaries of who is and is not “disabled.”  In other words, social designations become inscribed as an attribute of the body; socially constructed categories (e.g., being unvalued, excluded) become conflated with the impairments themselves.  This process needs to be better understood, as it can significantly contribute to the theorizing of disability as a social and cultural construction.  

For another, PWDs are often limited from the sociality that makes us human, whether this is a holiday party, business networking lunch, or informal get-together.  This can lead to negative secondary health conditions (e.g., depression resulting from social isolation) and/or further economic disadvantage.  Full “cultural citizenship” (Rosaldo 1994) cannot be achieved until PWDs have access to the same social resources as their non-disabled peers. 

Lastly, theories of consumption are have become intimately entwined with theories of identity (Bourdieu 1984).  Food, as a centerpiece of consumer culture in the U.S., has become a relatively new and important marker of class status and elite identities (e.g., “foodies,” vegans, “locavores”) that are often off-limits for many PWDs.  While on the surface this may seem a less consequential issue than nutrition or sociality, it is significant for PWDs.  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 choosing what they eat.  Simply put, lack of control over food reinforces the infantilization of PWDs and reinforces their status as dependent, “perpetual children” (Longmore, 2003).

To read more about this topic and/or to find useful rerources for disabled people, please visit:  https://disabilityfeast.wordpress.com/

References:
Bourdieu, P.  (1984).  Distinction:  A Social Critique of the Judgment of Taste.
(Translated by Richard Nice).  London: Routledge.

Coleman, A. & Nord, M.  (2013a). “Disability Is an Important Risk Factor for Food Insecurity.”  Available online at: http://www.ers.usda.gov/amber-waves/2013-may/disability-is-an-important-risk-factor-for-food-insecurity.aspx#.VFUKA6hbtSU  

Coleman-Jensen, Alisha, and Mark Nord.  (2013b)  “Food Insecurity Among Households With Working-Age Adults With Disabilities,” ERR-144, U.S. Department of Agriculture, Economic Research Service, January 2013.

Davies, Charlotte Aull.  (2007).  “Food and the Social Identities of People with Learning Disabilities.” Disability Studies Quarterly, 27(3). Online at http://dsq-sds.org/article/view/21

Lance, G. Denise.  (2007).  “Do the Hands that Feed Us Hold Us Back?:  Implications of Assisted Eating.”  Disability Studies Quarterly, 27(3).  Online at  http://dsq-sds.org/article/view/23

Longmore, Paul K.  (2003). Why I Burned My Book and Other Essays on Disability.  Philadelphia:  Temple University Press.

Rosaldo, R.  (1994)  “Cultural Citizenship and Educational Democracy,” Cultural Anthropology, Vol. 9 (3): 402-411.  

Ver Ploeg M, Breneman V, Farrigan T, Hamrick K, Hopkins D, Kaufman P, Lin B, Nord M, Smith T, Williams R, Kinnison K, Olander C, Singh A, & Tuckermanty E.  (2009). “Access to Affordable and Nutritious Food: Measuring and Understanding Food Deserts and Their Consequences.”  USDA Report To Congress, Administrative Publication No. (AP-036).  Available online at:  http://www.ers.usda.gov/publications/ap-administrative-publication/ap-036.aspx

Webber, Caroline, Jeffery Sobal, and Jamie S. Dollahite. (2007).  “Physical Disabilities and Food Access Among Limited Resource Households,” Disability Studies Quarterly, 27(3).  Available online at:  http://dsq-sds.org/article/view/20