The purpose of this article was to investigate the social implications of assisted eating. Email interviews were conducted with six people with disabilities who need eating assistance. The author also explored her own experiences as a person with cerebral palsy who must be fed. All the interviewees reported avoiding events which involved food at one time or another on the basis of having to be fed. Since many were uncomfortable being fed in public at the onset of disabilities, they used strategies such as eating before or after an event, selecting foods they could feed themselves, or bringing an assistant. The interviews and author's experiences revealed several possible relationships between assisted eating and the building of social capital.
Keywords: Disabilities, social capital, feeding, assisted eating
When I was in third grade, school officials decided that it was unacceptable for my mother and aide still to be feeding me. The seven years I spent in occupational therapy and the numerous utensils with built-up handles and plates with raised edges and suction cups on the bottom had not proved helpful in bringing me to a point at which more food would be in my mouth than on the floor. Still, how was I ever going to be an accepted member of society if I could not feed myself?
The day before the feeding experts came to evaluate me and pass down their learned suggestions, the speech therapists asked me a question that foreshadowed the fate of this next self-feeding trial: "What kind of Jell-O do you like?" I requested lime, since that was what I always had when my family ate at the local steakhouse. Not a fan of Jell-O otherwise, the presentation in glass parfait glasses topped with a glob of whipped cream always enticed me. Even in my third grade mind, I knew that Jell-O was just about the toughest food they could have selected, a food that is promoted based on wiggling and jiggling. Yes, that was the perfect choice for someone with unsteady hand control from cerebral palsy to prove her self-feeding ability.
Needless to say, I failed the test. I am not sure which moved more, the Jell-O or my hand. From then on, I was no longer pressured to learn to feed myself, and I have relied on family members and personal assistants ever since. I did not dwell on the need to be fed or let it ruin my self-image.
As I grew older, I encountered more events involving food and the social implications of having to be fed became apparent. It wasn't just about satiating hunger anymore: there were definite social disadvantages to having to be fed.
Food and socializing are inextricably bonded in our culture. As Mintz and Du Bois (2002) point out: "Next to breathing, eating is perhaps the most essential of all human activities, and one with which much of social life is entwined" (100). Going out to lunch or dinner, attending informal and formal receptions, and inviting people to our homes for meals are all ways in which we build social capital.
Social capital refers to the potential benefit we achieve from establishing a network of friends, acquaintances, and business associates. The concept was first theorized by Bourdieu, applied to education by Colman, and popularized by Putnam (Field, 2003). A multidimensional concept, social capital depends upon our everyday interactions with others (Dekker & Uslaner, 2001). While 'bridging social capital' refers to one's involvement in groups of people with diverse opinions and backgrounds, 'bonding social capital' refers to belonging to groups whose members are more similar to one's own. Putnam saw social capital as the reciprocity and trust built through networking with others through civic involvement. Putnam argued that Americans lack of involvement in groups was responsible for an overall decline in society, as manifested in a lack of connectedness and concern for others (Field, 2003). Accordingly, I suggest that people who need assistance eating are more likely to be disadvantaged in building the bridging type of social capital, but experience the bonding capital in a significant way with others. Therefore, building on Putnam's ideas, building "bonding capital" helps to strengthen society; engaging people with feeding assistance could offer benefits to society as a whole.
The purpose of this article is to investigate the implications of needing assistance in eating through analysis of the responses of people with disabilities to an email interview and from my own experiences as a person with cerebral palsy who must be fed. Because so many potential networking events involve food, I was curious if others felt, as I sometimes do, that their ability to build social capital was hampered by their need for eating assistance.
Studies of eating in public, such as Martens and Warde's (1997) study of the experiences of people in Northern England, have neglected the perspective of people with disabilities. In fact, there are very few articles addressing the issues associated with public eating for people who need assistance to do so. In articles dealing with aftereffects of stroke and surgery for essential tremor, eating in public is only mentioned in passing (Perry & McLaren, 2003; Hariz, Lindberg, & Bergenheim, 2002). The pilot research presented in this article begins to address that gap.
To investigate the issue of assisted eating, I posted messages on three disability related discussion lists asking for people who needed assistance eating to participate in email interviews about their experiences. List members were also asked to forward my request to any other people who might be willing to be interviewed. Seven people responded to the call for participants and received a list of questions in return. Respondents included two women and four men, ranging from 17 years old to middle age, who require assistance eating and one mother of a teenager with physical disabilities (whose son was also a participant). Their impairments included spinal cord injury, polio, brain hemorrhage, spinal muscular atrophy, and a type of brain damage called kernicterus.
In this exploratory research, I asked the respondents their views on the following topics: eating with assistance in public settings, both business and social; whether they avoided eating events because of their need to be fed; whether being fed interfered with conversations; whether they felt that they had been left out of events; whether they had sensed uneasiness with eating partners; whether being fed affected romantic meals or dating, and whether etiquette or the stares of other people concerned them.
Responses were analyzed using standard qualitative methods to determine common themes and variation in experiences. Despite the limited number of participants, the answers of most were quite similar. Again, the purpose of this study was to determine the range of experiences in negotiating public eating and to document how the use of eating assistance in American culture limits the building of social capital. Further studies should investigate how generalizable these experiences are, and whether there are differences based on gender, length of time using feeding assistance, or other variables.
Time constraints limited the soliciting of interviewees to those connected with disability listservs, thus limiting the generalizability of the results. Centers for independent living and other disability organizations could be contacted in order to locate more people who require assistance eating. In addition, finding people through non-electronic sources would allow for the opinions of those without internet access to be included. More in-depth interviews and perhaps observations could also expand our knowledge in this area.
Experiences of Assisted Eating
All the interviewees reported avoiding events that involved food, at one time or another, on the basis of having to be fed. Another popular tactic was to attend, but not to eat in public, opting to eat before or after the event.
There are instances in which feeding ourselves in public is not an attractive option. While many use any means necessary to eat in private, they realize that unconventional methods of eating would not be well accepted in public. As a man with polio explained:
Though I can do it at home alone, I never bend down and pick up something with my mouth in public. Left to my own devices, when no one is around, I can do a piece of fruit, bread, or nuts, etc. but not in public.
The people with whom one eats and the nature of the event make a difference in how individuals negotiate eating situations. A college man with physical disabilities points out: "I'm very picky at where I'll allow myself to be fed. I allow myself to be fed around close friends or family members, or at disability conferences where I won't be the only one." A study by Miller, Rozin, and Fiske (1998) revealed that American college students associated feeding with romantic relationships but not with casual friendships or coworker relationships. Notions concerning the intimacy of feeding another person may not only interfere with our comfort with being fed in public but also complicate others' comfort with our being fed or feeding someone who is not a romantic partner.
In situations where we are in the company of friends and family, most did not have difficulty being fed. In the company of unfamiliar people, however, the risk of being stigmatized or stared at increases. Those who have acquired disabilities in adulthood report that they had to become accustomed to public reactions to being fed. As one woman told me:
I got angry at the "walkie-talkies" for staring and started to be a smart-mouth, saying, "What the f*** are you staring at???" After a while, that got old, and I just ignored the funny looks from the vox populi and started to enjoy myself again. Now, I go out every week with my mom, sister, or friends and am oblivious to the people.
A mother of a teenager with physical disabilities stipulated that even disability-related gatherings are not always easy to negotiate in terms of eating:
When he went to wheelchair basketball camp, he made sure he had extra food that he could eat in case they had things that would be difficult for him. Even activities that cater to people with disabilities don't always get it right.
For those who have speech disabilities, speaking and eating are not necessarily compatible activities. A teenager with physical disabilities shared: "It's hard enough doing one of those things let alone both at the same time. If there is a conversation, and I want to contribute, I have to stop eating in order to respond." As the teenager's mother added, talking and eating also lengthens the meal.
My husband and I always talk a lot at the table, and for [my son] to participate he has to stop doing everything else. It does make dinner longer because he is a slower eater and when he spends time talking it takes even longer. We try to think about that, but sometimes we have to tell him to stop talking and eat because he is running late.
In time, most said that they had learned to ignore the stares cast their way. For most, the curious looks of children provide an opportunity to teach about disabilities. As one woman with a disability from a brain hemorrhage admits: "I'm oblivious to the people — except for the children, whom I adore. For them, I smile, say Hi, and patiently answer their honest questions about me and my wheelchair."
Although conclusions cannot be generalized due to the small number of interviewees, for those in this study, concern about public perception of assisted eating seems to be influenced by factors such as onset of disability and gender. For example, the male respondents indicated either that etiquette issues had never concerned them or that they had experienced disability long enough that they no longer worried over it. One man with quadriplegia said that he used to worry about public reaction to his being fed, but now, "I'm too busy with friends to even notice other people staring." In contrast, a woman with spinal muscular atrophy, for whom having a disability is fairly new, affirmed:
I often worry about etiquette. In public places, I'm a very careful eater and try to do everything to minimize effects of disability. Sometimes, I even get a little obsessive about etiquette to a point that appearing graceful takes precedence over filling my tummy!
These interviews demonstrate that most people with eating disabilities have strategies with which to handle public eating events by eating at another time, selecting foods that they can feed themselves, or joining the festivities by bringing an assistant. Nonetheless, there are additional social, economic, and political consequences of sometimes choosing not to attend events involving food.
According to Warde, Tampubolon, and Savage (2005), eating events are important to networking and building social capital, which involves our use of social relationships to advance our positions in life. As Potts (2005) explains, social connections often serve as venues through which people, both those with and without disabilities, find employment. Therefore, having to be fed may be a disadvantage if it causes people to avoid opportunities in which social capital may be gained. Gaining leadership positions and employment opportunities frequently involve meeting and socializing at conferences and other meetings.
Those who use attendants reported that they are comfortable talking about business or work-related topics with attendants present, but personal, family issues and sex were identified as problematic topics. Additionally, having another person around can hamper socializing. Some people may assume that a person who has an assistant already has a conversation partner, and some just do not know how or want to approach someone with an assistant.
Lin (2001) suggests that the traditional means of building social capital are being replaced by "cybernetworks," although the extent to which this is happening remains understudied. While increasing use of online communication for social networking may benefit those who have difficulty socializing while dining, some argue that electronic networks are helpful in sustaining contacts already made in person but not necessarily the best means of building new social capital (Wellman, Haas, Witte, and Hampton, 2001). Although online communications may help people with disabilities build social capital, those in my interviews stress that hiding behind our computer screens should never be a sole resort. In order to increase society's awareness and comfort with disabilities and strengthen our advocacy efforts, we must be seen doing as much as possible in public venues.
Not only does having to be fed present potential exclusion from some employment and social opportunities, but it can also make romantic relationships more difficult to establish. Eating is often a part of dating in North American culture. A person needing assistance must insure that his or her date is prepared to offer assistance or not mind that a personal care attendant comes along. The later option lacks appeal to many, who envision dating as becoming familiar with another person on a one-on-one basis. Having someone along seems as if it would hinder this intimacy, or at least make it more awkward. As one young woman with spinal muscular atrophy explained:
I would not make going out to a restaurant the first date. In fact, I probably would not eat with my date until (if even) the relationship was more serious. Then, I would start by making sure that he was aware of the fact that I needed assistance and have a meal in private with him first.
However, she also pointed out:
I think it's important to note that having someone help you to eat is not always a negative thing in a serious romantic relationship. For example, I know of a pretty high class and very romantic fondue restaurant in which feeding one another is not uncommon. Patrons have semi-private booths, so it isn't right out in public, and "assisted eating" is sort of the norm.
A man with polio also shared an experience that illustrated that feeding someone might not quash "the mood" for some after all:
When I was in my 20's, I used an orthotic setup sometimes called a BFO (balanced forearm orthesis). It worked pretty well for me then on a level surface at the level of functioning I had then. But I only hooked it up for eating... I remember a particular young woman about my age, a kind of poetic, literary grad student. We had shared some pleasant experiences and eaten together a few times (she doing it all for both of us) when I showed up one day with my eating equipment in a case. I explained what it was and that I needed her to set it up including the hand-splint. It was always a bit of an ordeal, especially the first time. But she complied. The meal went well. It was at a mutual friend's house. But then she said, obviously not impressed by my "independence" with my contraption, "You made me do all that just to deprive me of the intimacy of feeding you?"
These comments are consistent with the connection between feeding and romantic relationships found by Miller, Rozin, and Fiske (1998).
Thus, it seems as if having to be fed may or may not be an obstacle to romance, depending on the other person, the setting, the closeness of the relationship, etc., and many still have concerns. A mother of a teenage boy with physical disabilities commented: "I worry about how he will come across on a date. I don't expect that he'll start out with dinner dates but he could surprise me!"
A Personal Perspective
Like the respondents, I have avoided social situations that involved eating because of my need for assistance. I have also used the tactic of going to events but not eating. I first realized the difficult social position of needing assistance eating in high school, when I attended extracurricular activities without assistance. If a meeting had snacks, my strategy was just not to eat, but take a straw so I could drink. Surprisingly, none of my friends ever offered to help me, just letting me sit and watch them eat. I admit that I never asked for their assistance either, so they probably thought that if I wanted to eat, I would have asked for help.
One Saturday, I went to a journalism conference with friends from the newspaper staff. Afterwards, we stopped at a fast food place for lunch. My strategy that day was to order finger food that I thought I could eat without too much mess, so I told my friend to order chicken nuggets. He asked if I wanted fries too, but I said, "No, they're too hard for me to feed myself." I knew this from an unsuccessful attempt at getting the long, limp potatoes into my mouth. To my shock, he said, "Don't worry. I'll help you." That day, sitting with my friends, eating, talking, and laughing, I felt more accepted than I had in 11 years of being included.
I have declined several invitations to "get acquainted" lunches because I need to focus my attention on eating or speaking. Switching between the two increases my chances of choking, which does not make a great first impression! Unlike those I surveyed, I do believe that other colleagues may have excluded me from eating events such as impromptu lunch outings. I am unsure whether I am not asked because people do not want to assist me or are uncomfortable eating with me, or if they realize that visiting and eating are difficult for me and do not want to place me in an uncomfortable situation. Nonetheless, I can see instances in which needing assistance eating might hamper my ability to build social capital, especially if I needed to network in order to advance my professional status. For example, I have avoided receptions that are common in academic settings, even while noting that this might hurt my chances at forging new connections and placing me in mind when colleagues are looking for collaborators.
For me, writing is the most comfortable form of communication, so electronic networking works well. However, I am sure that when I avoid live events in which eating is expected, I miss opportunity for gaining social capital.
In their analysis of Northern Englander's reasons for eating out, Martens and Warde (1997) argue against Finkelstein's notion that eating in restaurants is detrimental to society in that these settings do not encourage the self-reflection necessary for civility. According to Finkelstein: "Civility is not the respecting of conventions which facilitate peaceful interaction and exchange of views, but engagement in dialogue without restriction of topic or constraint by authority, rules or orchestration" (qtd. in Martens and Warde, 1997, 133). Finkelstein argues that restaurant eating encourages people to engage in ritualized exchanges without giving much thought to the social condition, and as such, fosters incivility. However, Martens and Warde's interviews demonstrated that "Diners are discerning people, who actively participate in and shape the event, rather than being confused, blinded or de-sensitized by the regime of the establishment in which they find themselves" (146). Participants noted several reasons for eating out, including wanting to eat good food, to spend time with friends and family, to avoid cooking, and to add variety to their lives. Although Finkelstein suggests that eating in private is preferable because private places encourage unobstructed, genuine social interactions, Martens and Warde disagree, charging their colleague with misunderstanding public spaces:
If Finkelstein's utopia is the private, domestic, introspective episode of self-examination, others hold contrary views, expecting positive social benefits from participation and interaction in public space. However, neither of these alternative aspirations are apparently realised in the restaurant. One observable trait of behaviour in restaurants is that people at different tables rarely engage in conversation with one another. The restaurant is not exactly a public place, rather it is a quasi-public place. The restaurant is a space containing a number of private reservations (tables), from which mutual inspection of the tenants of other reservations is permitted, and where one's own behaviour is restrained by the gaze (and power) of others. So, eating out is not necessarily commendable for its encouragement of public conviviality and coexistence. Rather it is private behaviour in a public place. To that extent, it has limited potential for encouraging a public sphere or civil society. However, it does have some other, if less elevated, functions for customers. (147).
In the above discussion, I have outlined several implications of having to be fed in public. This initial investigation integrated my personal experiences with the responses of seven other people to a brief e-mail interview. I hope that the issues raised spark further research, especially concerning how assisted eaters build social capital and the impact of assisted eating on romantic relationships. The nature of restaurants as quasi-public spaces, relating that with public acceptance of disabilities, would also prove an interesting and important topic for disability studies.
Those who need eating assistance and others with disabilities should view eating in public as a venue for education and advocacy, as well as opportunities for building social capital. If we only eat in private, as Finkelstein suggests, dialogue concerning disability would be stifled, as would the civility of society.
- Dekker, P. & Uslaner, E. M. (Eds.). (2001). Social Capital and Participation in Everyday Life. London: Routledge.
- Field, J. (2003). Social Capital. New York: Routledge.
- Hariz, G-M , Lindberg, M., and A. T. Bergenheim. (2002). Impact of thalamic deep brain stimulation on disability and health-related quality of life in patients with essential tremor. Journal of Neurology, Neurosurgery and Psychiatry, 72(1); 47-53.
- Lin, N. (2001). Social Capital: A Theory of Social Structure and Action. Cambridge, England: Cambridge University Press.
- Martens, L. & Warde, A. (2005). Urban pleasure? On the meaning of eating out in a northern city. In P. Caplan, (Ed.) Food, Health, and Identity (131-150). London: Routledge.
- Miller, L., Rozin, P., & Fiske, A. P. (1998). Food sharing and feeding another person suggest intimacy; two studies of American college students. European Journal of Social Psychology. 28(3), 423-436.
- Mintz, S. W. & Du Bois, C. (2002). The Anthropology of Food and Eating. Annual Review of Anthropology, 31, 99-119.
- Perry, Lin & McLaren, Susan (2003). Eating difficulties after stroke. Journal of Advanced Nursing, 43(4), 360-369.
- Potts, B. (2005). Disability and Employment: Considering the Importance of Social Capital. The Journal of Rehabilitation, 71(3), 20+. Retrieved November 1, 2006, from Questia database: http://www.questia.com/PM.qst?a=o&d=5010939023
- Warde, A., Tampubolon. G., & Savage, M. (2005). Recreation, Informal Social Networks and Social Capital. Journal of Leisure Research 37(4), 402-25.
- Wellman, B., Haase, A., Witte, J. and Hampton, K. (2001) 'Does the Internet increase, decrease or supplement social capital?: Social networks, participation and community commitment', American Behavioral Scientist, 45(3): 436-455.