RELOADED Disability Studies Quarterly Summer 2007, Volume 27, No.3 <www.dsq-sds.org> Copyright 2007 by the Society for Disability Studies

Introduction

Sociological studies of food have tended to treat it as a dependent variable and hence have looked at how patterns of consumption are influenced by structural factors, primarily of class, gender and age (e.g., Blaxter and Paterson, 1983; Murcott, 1983; Pill, 1983). Social anthropologists, who have a longer tradition of interest in food, have approached the subject from a greater variety of perspectives (Caplan 1994; Messer, 1984). One such has been to study food and the patterns of its consumption as a medium of cultural communication (Barthes, 1979). Food practices, instead of merely reflecting cultural assumptions, may be seen as a means of defining and sustaining them (e.g., Borre, 1991; Lee 2000).

Charles and Kerr's (1988) study of food and its relationship to gender within families, although from a sociological perspective, nevertheless lies within this latter tradition. While not neglecting the determinative role of structural variables in food practices, they also found that such practices reproduce the social order, in particular, patriarchal relationships within the family. Furthermore, they argued, practices that embody relationships of dominance were also a locus of conflict and resistance. They documented such conflict between parents and children, especially over type of food provided and behavior expected at mealtimes (cf. Ellis, 1983).

This paper examines a similar process in which food and its provision are factors in defining and sustaining essentially undesirable, stigmatizing aspects of the social identities of people with learning disabilities.1 Following a description of the research project on which these findings are based, the subsequent section of the paper considers the links between food and social identity. The uses of food in this regard are found to be twofold: both the type of food consumed and the degree of control exercised by others over its consumption tend to mitigate against people with learning disabilities establishing unambiguous adult identities. Not surprisingly, in some cases food is also found to be an area of conflict, and the third section of the paper looks at examples of the forms that such control and resistance to it may take. Finally, the paper examines anomalies that arise in the area of diet and nutrition under policies of care in the community that attempt to facilitate the greatest possible degree of independent living for people with learning disabilities.

Research Design

The research on which this paper is based was a three-year study of the transition to adulthood of people with learning disabilities.2 The study was located in south Wales in the city of Swansea, with a population of approximately 250,000, and its hinterland. The fieldwork for the study was carried out over 18 months and consisted of a series of in-depth, semi-structured interviews with 60 young people, aged 17-27, with learning disabilities. I interviewed most of these young people on three or four separate occasions and subsequently carried out semi-structured interviews with their parents or caregivers. In addition, I undertook extensive participant-observation at the various day centers which most of the young people attended.

The guiding methodological approach for the research was ethnographic. Thus fieldwork involved checking and re-checking emerging findings through a variety of methods (informal conversations, semi-structured interviews, observation and participation), as well as eliciting the perspectives of different categories of research subjects (young people, parents and caregivers, professional staff). Recognizing the likely differences among these categories in their ability to influence the opinions of others, including those of social researchers, I always interviewed the young people prior to their parents or caregivers. Nearly all of these interviews were conducted in neutral sites: mainly day centers, a few in other locations, such as a club, café or workplace. Participant observation with the young people was an important additional source of data; in a few cases, with people who had very poor verbal communication skills, it was the major data source. Interviews with parents and caregivers usually took place in their homes, in a single session lasting from one to four hours, and were semi-structured.

Although the research topic was more broadly focused than on the specific concerns of this paper with food and social identity, the interview schedule did contain questions about going to pubs and eating out, as well as attempts to elicit information about daily schedules, including mealtimes. Furthermore, in the course of more general discussions to develop rapport with these young people, I found that food (favorite foods, contents of recent meals and snacks) was almost inevitably a topic that promoted discussion. I also found coffee and tea breaks and lunch hours to be very productive occasions for participant-observation, much more so than the more formal classroom or workshop locations. Thus, a great deal of data regarding food and its consumption was forthcoming. Parental interviews, which also included questions about daily schedules, often gravitated to the subject of food, even without questions specifically prompting it.

Thus the focus of this paper and its findings were not preconceived but emerged quite strongly during the process of fieldwork, and additional confirmation for developing ideas was sought as interviewing progressed. Such a process is one of the strengths of ethnographic research, both helping to attenuate some of the researcher's preconceptions and allowing for the research subjects to assume a more interactive role and exert at least a degree of influence on the research agenda. It is also an example of the development of grounded theory, broadly interpreted to mean theory that emerges from the data, rather than being imposed upon them. However, once fieldwork ended, the program of analysis that was adopted departed from classical grounded theory, which emphasizes theorizing based on the discovery and explanation of new atypical instances rather than completeness of coverage of the original dataset (Glaser and Strauss, 1967; Richards and Richards, 1991, p. 44). In contrast, in this study, all interviews were fully transcribed and coded using The Ethnograph (Qualis Research 1998), with codes denoting concepts derived from existing external theories, such as those relating to social adulthood, as well as those that emerged in the process of either fieldwork or analysis. This procedure insured that all instances of an issue were available to be examined and compared when developing the interpretation of findings.

Food and Social Identity

Control over food consumption — what kinds of food are provided, how much is made available, at what times and under what circumstances it may be eaten — is a very basic form of power. Adults routinely exercise this power over children. Food and its provision are used to express and reinforce dominance as well as to socialize children into gender identities. As they move towards social adulthood, children's food preferences usually change in accordance with adult expectations and, while they develop food behaviors influenced by gender and class, they gradually acquire greater nominal control over their own food consumption (Counihan, 1999, pp. 113-55). As I shall argue, establishing control over food consumption is much more problematic for people with learning disabilities, nor do their patterns of food consumption change so readily as they age. Thus, they move into early adulthood with food consumption patterns, which are normally associated with children. Such behavioral ambiguity compounds the difficulties they face in attempting to achieve social adulthood.

For people with learning disabilities who live in institutions, lack of power to direct their own lives has frequently been described in terms of inability to make basic choices regarding food and drink, such as, when to have a cup of tea and whether or not to have milk and sugar in it (Swain, 1989, p. 113). Ryan's (1987) study of a "mental handicap hospital" documented how food was provided in a manner that was demeaning and oppressive and that, furthermore, was designed to maintain an absolute distinction between staff and residents. And Gleason's (1989) ethnography of one ward of an institution for individuals with multiple and severe disabilities records an incident of oppressive feeding methods and describes the attempts of the individual involved to resist being fed in such a manner.

However, the young people I worked with were not in such institutions. The majority were living with their parents; others were in group homes. They had, for the most part, been beneficiaries of the changes in social policy that grew out of the philosophy of normalization. They lived comparatively varied lives in which they were encouraged to develop some degree of autonomy. Nevertheless, their food choices and the circumstances of its consumption were often controlled by others and tended to reinforce a stigmatizing social identity.

Consider the following conversation (i = interviewer; r = respondent) with a young man, 20 years of age, with Down's Syndrome.

Noteworthy in the above are: the kinds of preferred foods, which I will discuss first; and the apparent regulation of food choices, to which I shall return later. The food preferences stated here were typical of the young people I interviewed. Chips (i.e., french fries), meat pies, sausages and beans were overwhelmingly mentioned as favorite foods. Although we discussed Sunday dinners in the context of their weekly schedules, no one selected this meal, or indeed any 'proper meal' (meat, potatoes, two vegetables), as an especially enjoyed type of food. No one referred to high-status meat (steak or select cuts), and only a very few expressed a liking for salads. Food preferences were remarkably uniform and reflected a pattern of food consumption, which in British culture is associated with children. Furthermore, there was no clear indication of gender differences in food preferences, which other studies have found to emerge by late adolescence (Hamblin, 1980).

Thus, in general, food preferences tend to weaken the adult social identity of people with learning disabilities. Such ambiguity is compounded by their reported use of pocket money; nearly all said they spent their pocket money on soda pop, sweets and chocolates. Although many, when prompted, would also say they spent money on items more typical of young adults (music, clothes, films), the vast majority named the above children's treats as their first spending priority.

Their adult identity, in terms of food and its uses, was also further compromised by their birthday celebrations. Many individuals, or their parents, reported having birthday parties on a childhood pattern, with a decorated cake as the focal point. These parties were normally either family affairs held at home or parties for groups of people with learning disabilities and their parents (usually their mothers) held at one of the special clubs. Parents were not entirely unaware of the incongruity of such parties for young adults. One mother said that she and her husband had tried, unsuccessfully, to persuade their 26-year-old daughter to go out with them for a special meal on her birthday, instead of having the usual family tea party, which she described as follows:

In a different context, most parents were less aware of an implicit denial of adult status to their offspring in their very commonly expressed pride that "you can take them anywhere," and in particular out for a restaurant meal, and depend on them to behave properly. The following comment was made by a woman about her 21-year-old son:

Such a comment, if made about an adult without learning disabilities, certainly would be perceived as inappropriate. This woman went on to suggest, without any apparent sense of its incongruity, that other people sometimes offered her son sweets when they were out, a gesture normally reserved for quite young children.

Parents often did maintain that they considered their daughters or sons to be adults and would point to the fact that they liked going into a pub and having a drink. The importance generally attributed to this activity, not only by parents, but also by people in the service professions, reflects its centrality in British culture as an archetypical adult activity, particularly for men. Nevertheless, the drinking preferences of the young people I interviewed did appear to deviate from expected adult patterns, in their commonly expressed preference for non-alcoholic drinks.

Koegel (1986) discusses an example of the way in which a young man with learning disabilities had been effectively prevented from drinking at all by his father who had encouraged him, on his first introduction to alcohol, to consume so much that he was violently ill afterwards. In my interviewing I did not uncover any examples of this sort of negative conditioning. Indeed, only a handful of the young people I talked to said they had ever been drunk or even had too much to drink. In many cases, parents had even tried to encourage more 'adult' tastes in choice of beverage. One couple had started attending a special club with their daughter.

However, in most cases, a degree of parental control was also evident. Many parents accompanied their sons or daughters to the pub, a reflection of these young people's comparatively limited social networks among their own age group; and a few young people reported quite specific injunctions regarding how much to drink.

Control and Resistance

This brings me to the question of the degree of control exercised by others over the consumption patterns of young people with learning disabilities. The young man in [8] above as well as the one in [1], who was trying to stop eating chips, had clearly been persuaded to exercise restraint in consumption and both appeared to have accepted, and to some degree internalized, these proscriptions.

However, I observed other efforts to control diet in which resistance, and sometimes, open conflict could be more readily discerned. Many overt attempts to control consumption were intended to enforce a 'normal' eating pattern of three meals a day. For example,

Other efforts at control were directed at individuals deemed to have some dietary problem (e.g., obesity, diabetes, refusal of food), as several examples from my fieldnotes elucidate. The first concerns Carol, a young woman of 19, quite obese, with Down's Syndrome. After one of my interviews with her, I accompanied her to the canteen for the morning break.

During another morning break I shared a packet of cookies I had purchased with a second young woman. Although we had been sitting apart from anyone else in the canteen, the fact that Louise had accepted and eaten the cookies had been noted by staff and was commented on to me later in the morning. I was told that Louise's parents were concerned about her refusing food of late. On another occasion, at lunch with Louise, another student and a member of staff, I was able to observe how closely her eating was being monitored.

In a somewhat different incident, I observed a cooking class of four students, assisted by two staff members, prepare and eat a lunch of sausages, instant mashed potatoes and baked beans. This activity took place in the hour just prior to the usual lunch break. The six of them were seated around one table with their lunch; I was seated to one side, having been given a cup of tea.

Such instances of explicit and deliberate control usually have a specific goal, whether the perceived nutritional well-being of the young people concerned or the teaching of expected food behaviors and attitudes in order to facilitate their integration into 'normal' social life. Their intent is to inculcate adult attitudes and behaviors regarding food; their unintended effect is implicitly to deny the adult status they ostensibly are trying to promote by undermining the autonomy of these young people to make decisions about their own food consumption.

There are other forms of control which are less the result of deliberate intent, but are possibly even more effective in undermining adult social identity and hence in creating the stigmatizing mixture of chronological adult with behavioral child. In one institution, students with learning disabilities shared facilities with mainstream students. This meant, among other things, queuing in the canteen for breaks and lunch. While such an arrangement is clearly intended to maximize choice and increase 'normal' social contacts, various factors limited these outcomes. In the first place, having relatively large numbers of people with learning disabilities, some with physical impairments that made handling food trays difficult or impossible, arriving in the canteen together invariably caused the queue to back up. This problem was partially overcome by staggering their time of arrival to avoid the most congested periods. In addition, the staff that accompanied them would try to facilitate their passage through the queue by checking that they had enough money, telling me (when I was accompanying an interviewee) what they 'usually' had. Even more than these staff members, who were trying to balance the requirements of getting people through the queue while at least preserving some façade of independence for them, the women serving behind the counter tended to reduce choice and genuine decision-making in their efforts to be helpful. They knew what most of the students 'usually' had and simply provided it, sometimes seeking confirmation from the student, often not. It required a very determined young person to alter his or her customary menu, and I only saw this occur on a couple of occasions, both involving individuals who had a reputation for disruption and willfulness.

It should be stressed that the above observations were made at one of the most enlightened of the day centers, in terms of its emphasis on encouraging independent living skills and integration into 'normal' social life. At other centers, choices were restricted more directly. For example, at one, morning break meant a cup of tea served in a plastic cup and saucer (although pop and sweets could be purchased in a small shop). Staff sat at a separate table and had a choice of tea or coffee in normal crockery.

This kind of control can be expected to produce some resistance. In most instances conflict over food was muted, but there were cases where food was the primary vehicle for conflict with parents. The following is from an interview with the parents of an 18-year-old man who had only recently moved into a group home (i = interviewer; m = mother; f = father).

This instance follows a pattern, common among young children, of disruption of the 'proper' family meal as the occasion when dominance is most clearly asserted (Charles and Kerr, 1988, pp. 85-94). However in this case, as the mother points out, what may have started as a childhood rebellion had continued into late adolescence.

Another case of much more intense conflict revolved around a young woman's great unhappiness with her self-perceived identity as "handicapped" or at least some aspects of it. Sandra was 21 years old; she was described by staff at one center as anorexic, and she and her parents had been attending a clinic to treat this condition. She was one of a minority of the young people I interviewed whose self-identity included being a "handicapped person" (Davies and Jenkins, 1997). Her mother had explained both the cause and consequences of her disabilities to her, and she related most of this to me in the course of several interviews, using many of the same expressions that her mother later employed when I interviewed her. While Sandra seemed to accept this aspect of her self-identity, she was greatly disturbed by at least one of its perceived consequences, her inability to have children.

A major factor in the interplay between her identity as "handicapped" and her anorexia appeared to be her mother's concern with her appearance. Her mother expressed her dismay about her daughter's weight loss to me almost entirely in terms of the fact that she could no longer dress her nicely. Furthermore, it became clear that she placed considerable importance on Sandra's appearance of 'normalcy'. Following is her description of the reactions of her son (Sandra's older brother) to an incident of name-calling by another boy:

Several times during the interviews, Sandra explicitly linked her appearance and dieting with conflicts with her mother. Prior to the following exchange, we had been discussing a job interview she had recently attended.

In summary, the food consumption patterns and practices of young adults with learning disabilities tend to define them as not fully adult and hence to contribute to one of the most stigmatizing aspects of their social identities. Their food and drink preferences tend to be those usually associated with children, as do their food-centered ceremonial occasions, such as birthdays. In addition, the circumstances and manner of food consumption by young adults with learning disabilities commonly are subjected to a very high degree of explicit control by others. Such supervision and control were observed even in institutions that encouraged independent living skills and integration. Finally, and not unexpectedly, some conflict over food thus occurs. Most frequently this is based on childish patterns of either eating forbidden foods or disrupting adult-dominated food occasions such as the 'proper' family meal. But in one instance, a much more complex interplay between self-identity as "handicapped", parental control and anorexia was observed (cf. Bruch 1997).

Nutrition and Normalization

The major philosophical underpinning for the policy of care in the community is the concept of normalization, or more recently social role valorization, that is, the belief that people with learning disabilities should be able to live lives as similar as possible to people without these disabilities (Wolfensberger, 1972). Thus, they should be able to experience 'normally' structured temporal sequences whether in their daily schedules (work, leisure, rest), their annual schedules (work, holidays) or over their lifetimes (childhood, adulthood, old age). Efforts to assist people to develop an adult lifestyle frequently have meant helping them to achieve the greatest practicable degree of independence. Balanced against this goal has been the recognition that the majority will require some level of continuing support to ensure that certain basic needs — for adequate diet, proper clothing, cleanliness, and protection from exploitation — are met. As a consequence, in many of the group homes, food preparation, for example, is entirely in the hands of staff. Such an arrangement has the disadvantage, from the perspective of normalization, of perpetuating a dependent relationship, in which the adult with learning disabilities remains in the position of a child all of whose food needs are met by someone else.

For this reason, many of the programs designed to prepare young people for independent living put a great deal of emphasis on teaching skills required to purchase and prepare food, in addition to other housekeeping skills. It is noteworthy that many of the day centers which encouraged integration in the community also spent a great deal of time in food-centered activities like taking people to cafes and pubs. However, menus devised to afford people with learning disabilities control over food provision for themselves, restrict their freedom of choice and, arguably, reduce their quality of life in other respects. Such menus tend to be limited in the range of culinary experiences they can provide. They also are neglectful of many dietary prescriptions. Thus, the kinds of food that are recommended are things like sausages, fish fingers, baked beans, tinned spaghetti, dehydrated potatoes (although this latter can be problematic for many in that it involves measuring). Even the use of prepared dishes for microwaving usually means reading directions regarding timing. Thus, heavy reliance has to be placed on those very prepared foods that are increasingly criticized for their nutritional deficiencies, foods that unnecessarily increase the amount of sugar and salt in the diet and that contain a variety of chemical additives.

Although the interviews conducted in this research did not provide conclusive evidence regarding the degree to which people with learning disabilities understand the requirements for a healthy diet, there is reason to believe that they do assimilate a considerable amount of nutritional information from a variety of sources (parents, teachers, television). Certainly their awareness of other healthy living messages, for example health risks from smoking, was clear. One 23-year-old man explained that staff in his group home were trying to persuade him to stop smoking, even though he did enjoy it.

In a like manner the evidence suggests that these young people will also hear and assimilate messages about healthy eating as these become more prominent. Acting on these messages may be more problematic for them. Both the young people I interviewed and those who teach or otherwise care for them, in trying to uphold the ideal of normalization, face a dilemma, namely, that to the degree they are encouraged to be independent in food provision, they are forced to accept diets that are neither stimulating of adult tastes nor responsive to considerations of good nutrition.

Conclusions

The behaviors surrounding food provision and food consumption provide very subtle, yet fundamental, ways of defining social identities and structuring social relationships. In this paper, I have argued that the food consumption patterns of young adults with learning disabilities, and the control over their food consumption that is commonly exercised by others, define them as 'children' even though they are physically and chronologically adults. These food-based behaviors contribute significantly to the difficulties they face in achieving full social adulthood and thereby further accentuate the stigma attached to their identity as someone with learning disabilities.

However, this relationship between the social identities of people with learning disabilities and their food practices should not be viewed as unique to them or as somehow atypical of ordinary social relationships. Rather, I would argue that the relationship is simply more visible in the lives of people with learning disabilities. The principal reasons for its greater salience in this respect are the relatively truncated social networks of people with learning disabilities (Davies 1998a) and the consequently greater significance of their food-centered contacts. In addition, the fact that the food practices of people with learning disabilities help sustain a clearly stigmatizing social identity suggests that these practices are even more than usually effective in communicating social meanings for and about them.

A final theme in the paper has been to highlight what appears to be a central dilemma of normalization theory and the philosophy of care based on it, namely, that actions undertaken to encourage age-appropriate behavior, and hence promote social adulthood in one sphere (eating three meals a day, having 'adult' birthday celebrations) quite commonly undermine adult identity in another (autonomy and freedom of choice). On the other hand, variety of menu, not to mention ability to act upon nutritional advice, may be severely limited by attempts to promote independence in food provision. This dilemma clearly is not restricted to the area of food provision and consumption but is a fundamental inconsistency in the theory on which current policies regarding provision of social services to many categories of clients are based (Davies 1998b). Certainly, the dilemma is faced and dealt with on one level, in the innumerable day-to-day decisions taken by those who are actually providing training, care and other services. But the theoretical and practical implications of this internal contradiction need to be more carefully explored.