Loneliness, shame and other effects on people with disabilities at mealtimes

Eating is about much more than consuming the right amount of nutrients. For humans, eating has important cultural and social implications. It defines us as people, marks our relationships and helps us build our identity. How do people with disabilities who have difficulty eating perceive food? What impact does the loss of sociability associated with difficulty eating have on them?

After analyzing the cases of 27 people with disabilities between 18 and 75 years old, the researcher F. Xavier Medina, Professor in the Faculty of Health Sciences at the UOC and director of the UNESCO Chair on Food, Culture and Development, and researcher Carmen Cipriano-Crespo, from the Faculty of Health Sciences of the University of Castilla-La Mancha and guest researcher of the Chair, have tried to find answers to these questions.

The results of their research have been published in an article written together with Lorenzo Mariano-Juárez, from the University of Extremadura, in the open-accessInternational Journal of Environmental Research and Public Health.

The importance of eating in company

Eating is crucial to our physical and social development. Doing so in the company of others is essential to creating and maintaining a sense of community. When we eat in company, the personal and intimate act of eating becomes a shared and collective experience. Thus, the table can become a stage where relationships of kinship or friendship are reproduced and common traditions, tastes and pleasures are displayed.

"Eating isn't only about nourishing the body; food also allows us to convey emotions and feelings. When we eat with others, we communicate with them, recall memories and participate socially in situations that allow us to share food interests and tastes," explained Carmen Cipriano-Crespo. "Nourishing oneself only meets the purpose of nourishing the body, but the social, affective, and emotional component that the person feels when eating in the company of others is lost."

"The goal of the study is to see how we construct ourselves as people through food. Eating, being a social act, also forms us as human beings. However, some people have impediments to eating normally and it's difficult for them to eat with other people, either because of the noises they make or because they can't share dishes," added F. Xavier Medina. "Then they are socially excluded, which can impact their self-esteem, mental balance and how they regard themselves as people."

Loneliness, shame and exclusion: Discrimination at the table

Disability generates a wide range of challenges in the daily lives of those people affected. Some of them are well-known, but others go unnoticed, such as those that affect sociability and self-esteem in relation to food. After studying 27 cases of people with different types of disabilities, the researchers concluded that there are four large groups of social and emotional effects that result from difficulty eating in groups.

• Loneliness and social ghettoization. Some of the participants in the study reported feeling that they were under the scrutiny of people without eating problems, which led them to want to withdraw, creating situations of social exclusion and provoking feelings of loneliness. This isolation does not occur when food and beverages are consumed in an environment with others who have similar difficulties to their own.
• Feelings of burden and shame. Eating in society involves interacting with others, e.g., sharing food, serving drinks to each other, and telling stories. However, the participants in the study described feeling like a burden, an obstacle in the way. This, in turn, is associated with feelings of shame.
• Self-exclusion from the table. As we sit down to eat, we show our inner selves, our concerns, and our differences to those with whom we share the table. Thus, any difficulty quickly becomes evident. The study participants noted that their disability, which prevented them from eating normally, makes them outsiders at the table. As a result, they sometimes choose to withdraw from these situations due to fear of the reactions of others.
• Distance and perception of ugliness. In some specific cases, people in the study had to be fed through a tube. This also affected their self-perception at the table, with some saying that they felt ugly and rejected. These situations are related to feelings of sadness and loneliness.

"Usually, we approach these people as sick people, as someone who has something to fix or overcome. But we forget that these people have a life," said F. Xavier Medina. "Although they aren't given the necessary importance, all these aspects have serious consequences that go beyond the strictly physical aspect."

"Health professionals should give more importance to eating than to nourishing. There should be more awareness and humanization among the professionals with whom, through no choice of their own, people with disabilities come into contact," added Carmen Cipriano-Crespo. "These studies are needed to bring this situation closer to the attention of healthcare professionals and to find solutions."

In her opinion, the possible solutions would include health professionals getting closer to narrative-based medicine, where not only the symptom is taken into account, but also how the symptom affects the person as a whole. "It's necessary to give the same importance to narrative evidence as to the rest of the evidence, since both work together with the objective of offering quality health care to people with disabilities," she concluded.