The word ‘community’ has heart-warming connotations of mutual support and reciprocal understanding. The sense of belonging that stems from being integrated into a social world perfused with care and empathy is seen as so universally desirable that nothing hints at the difficulties that becoming part of a specific community may entail. The focus of my research is not the battle that potential members may fight in order to be integrated. Rather, it is the meandering path that they walk as they consider how they may be negatively labelled once they have crossed the community’s boundary. It is the stop-start journey that they travel when they are plagued by the anguish of being stigmatised by their association with the community, and yet glimpse the solace that being part of it may offer them.
The type of community I am referring to is the one where people come together not because of their geographical proximity, but because of a shared characteristic that is perceived as discrediting. More specifically, I will summarise what I learnt while carrying out fieldwork with visually impaired people in an English metropolis. Some of my research participants had lost all or part of their sight at birth or in early life, while others had lived part or most of their life as fully sighted. When I met them, most of them recounted the period during which they had had to come to terms with their sight loss. Although this was particularly painful for those who were adventitiously visually impaired, some of those who had congenital sight loss had also felt uneasy when, at some transitional stages in their life (for instance when they needed guidance or training because their level of sight had decreased or because they were leaving their parental home in order to go to university), they had had to associate with other visually impaired people.
Even in Britain, where the capabilities of people with different types of disabilities have been celebrated, notably during the 2012 Paralympics, the historic association between blindness and unproductivity and passivity is hard to eradicate (see Caeton 2015:36). This makes visually impaired people particularly susceptible to stigma. That there is an interplay between the stigma imposed upon a subject by others and the one that the subject inflicts upon themselves is not new; in fact, it is at the heart of Goffman’s theory (1990). In meticulously describing day-to-day interactions, he sheds light on the half-said words, averted gazes and blushing hesitations that, though intangible, are the concrete building blocks of (self-)ostracization. Here I want to unravel the particular sort of stigma that, by preventing people with a similar disability from coming together to share information, experiences, as well as camaraderie, acts as a tool of social (self-)exclusion.
In what way can community constitute a brake on, rather than a catalyst for, social exchange? People felt that associating with sight loss groups and events would put them ‘in the same basket’ as other people with the same disability. At the time when I spoke to my informants, they had actually already overcome their ‘chaos narrative’ (Frank 1995:115-136), i.e. the sense of loss of self and self-worth that had characterised the first stage of their sight loss. They could more level-headedly look back at the time when associating with the visually impaired community had irritated them because it threatened to blot out their peculiarities. This feeling, which has been reported among other types of people all suffering from the same condition (see Gatter 1995:1526 on people with HIV), had exacerbated their isolation during an initial or transitional phase of their sight loss. Moreover, at the time of my fieldwork my informants could consider with more discernment the time when they had felt humiliated because of their association with people who had the same stigmatising condition as them.
After rejecting the label of ‘visually impaired’ and avoiding frequenting sight loss groups, many people would come to terms with their disability and join such groups. This transition was particularly draining for the concerned individual, as it ran in parallel to redefining their sense of a socially situated self. Indeed, because negotiating their degree of proximity to this community went hand in hand with redrawing their personal narratives, it was a process that may last a lifetime. If what prevented visually impaired people from joining the visually impaired community was their fear of being assimilated into an amorphous group where their peculiarities as a person would be not only erased, but eclipsed by the stigma of disability, then what incentivised them to join it? Some of my informants, like other people who coalesce around a shared condition or social disadvantage (see for instance Howe 1990:218 on the unemployed), spoke of the ‘kinship’ they felt when they were among other visually impaired people: they could exchange information about specific services, be released from the constant need to ‘explain themselves’ and their needs, and even joke about their sight loss (see Bloom 2019:125 and Devlieger 2018:168).
One of my participants lost her sight in middle age, and recounted to me the psychological, logistical and occupational challenges that this posed. Many years on, she is an active member of the visually impaired community I describe, and she is eager to test new devices for visually impaired people, go to audio-described performances and participate in focus groups and research projects, including my own. She told me that, as she walks around the city on her own with her cane, she listens out for a similar tapping sound, which could indicate the presence of another person with sight loss. In her imagination, an old or perhaps a newly discovered friend may cross her path, thus revealing that the initial dread to be part of this community has now turned into an opportunity for togetherness.
ABOUT THE AUTHOR
Annamaria Dall’Anese conducted her doctoral fieldwork with blind and partially sighted people in an English metropolis. Her areas of research are therapeutic emplotment and disability, and she also has an interest in the anthropology of writing. She is a versatile writer and the author of two self-published books: Oceano e Nomade (2010, in Italian), which is based on her experience studying and working in twelve countries across four continents, and The Tail of the Lizard: The Adventures of Vittorio Dall’Anese, Flight Engineer (in press), which combines Annamaria’s creative writing with the translated transcripts of the tapes recorded by her grandfather on his professional history.
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Frank A. W. (1995) The Wounded Storyteller: Body, Illness, and Ethics. Chicago: The University of Chicago Press.
Gatter P. N. (1995) Anthropology, HIV and Contingent Identities. Social Science & Medicine. 41 (11). P. 1523 – 1533.
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