This section of the Report on Social Vulnerability focuses on the personal accounts of people who are going through one of the highest risk and most vulnerable situations: dependency on others.1
The expressions of these individuals, as a fundamental way of gaining knowledge through experience, are the philosophy that has inspired these pages. Moreover, this expression constitutes the first link in the necessary chain of social participation that will make the problems visible and get them taken into consideration, plan changes and allocate resources, in order to improve the state of vulnerability of many people who are considered “dependent.”
The life story is an approximate description, objectively and subjectively, of the history that was really lived. Our wager with this effort involves “listening” symbolically to the emotional and experiential discourse of people who have no choice but to depend on others every day, listening to how they perceive themselves, how they see everyone else and, in the process, making it possible for them to discover the apparent fragility of their realities. By listening to their stories about their pasts and their capacities, the goal is to determine and propose strategies that will allow them to face their situations and improve their lives and, above all, to express how they combat the obstacles and barriers that have been placed before them from the outside.2
In order to orientate effectively the actions associated with social change, it is key to have the experiences and opinions of the true primary actors, assuming that dependent people are experts in situations of dependency.
To achieve these aims, sensory, physical, spatial and especially invisible barriers entwined by prejudice must be broken. Unfortunately, the visibility and social participation of people in situations of dependency is infrequent; in part because getting this to take place is a tedious and difficult task that requires time, as well as a bit of empathy and the ability to handle the frustrations. In a society in which setbacks are not usually addressed patiently or willingly, the people who live with special difficulties, whose bodies do not fit into the stereotypes of modernity, efficiency, beauty, youth, wealth and prestige, see their social and living space restricted terribly.3
The construction of one’s own personal image is a complex process in which individual, family, collective and social aspects come together. For instance, the experience that women have of dependency could be different and more severe than men; this could be due to historic gender inequalities, which have attributed them a series of obligatory “reproductive missions” that cannot be carried out “normally” in situations of dependency. Age and ethnicity can act as stimulating risk factors.
Other invisible limitations have to do with the social discourse on dependency. This discourse is built on everyday experiences, observations, religious interpretations, campaigns conducted by social action organizations and unions, institutional discourses, politicians, business corporations, newscasts and the media in general. Along with these sources comes the belief that it is “something that happens to others (and that luckily has not happened to me),” with opinions, assessments and unfounded thoughts (what would I do if…?).
While people find themselves in situations that are apparently similar to those of others, like for instance, living with paralysis or serious disabilities, every individual experiences and deals with these circumstances in accordance to their own experiences, capacities and circumstances.
It is also possible for some people, who are considered dependent by the rest of society, not to recognize themselves as being so; such could be because their subjective conceptualization of dependency is different or because they refuse to admit the severity of their situation out of feelings of pride or shame. In the latter cases, people tend to inhibit themselves from interacting with others whom they do not recognize as equals. In fact, studies highlight the existence of a “hierarchy” among people with special difficulties in which those who belong to a group that suffer from some specific complaints, do not want to be classified together with a social group of those who suffer from another type of disabling process (that is, physical, mental, etc.).4
Occasionally, due to the severity of their experiences and traumas, some dependent people can lack social skills, psychological stability or basic skills. Attitudes such as having a conflictive nature, apathy, anomy, mistrust, hopelessness usually contribute negatively and in turn generate a cycle of self-exclusion that is strengthened externally by the deepening of their situations.
There are also other factors that contribute negatively like the lack of trust in public and political institutions, the fear that their voices are not heard, exhaustion from not reaching the established goals, the “shame” of having to recognize themselves as vulnerable people in order to demand a particular right or making known a certain need they might have… The paradox of the social participation of people that need to solve vitally important questions (disabilities, dependencies, stigmatized illnesses, etc.) stems from having to first identify themselves as people suffering from or living under such circumstances, which causes a negative reinforcement of one’s self-esteem as well as other problems.
In sum, the most difficult and vital circumstances for everyday life, added to the barriers, prejudice, inefficiency and relinquishment of responsibilities in the public sector, along with an image that is frequently undervalued by, subordinated to or rejected by society, affect their perception of themselves and discourage their social participation.
Despite the obstacles, it is important to point out that human capacities are present even in the worst circumstances of vulnerability because the human beings who face adversity are the ones who can best know their own strengths.
The life stories of the 18 people interviewed represent an exercise in expression, communication and, consequently, social participation. These men and women of various ages and conditions put into practice the saying “the art of winning is learned through defeats.”