Living with blindness: unravelling contextualised lived experiences of James and his networks

Abstract

Blindness (in)directly affects all aspects of daily life and participation in society. Living with a visual impairment can be mapped in terms of the intra-actions between blindness and an individual’s networks. This study conceptualised visual impairment in the context of James and his different networks across his lifespan in an attempt to understand the contextualised and complex meaning of his disability. The lived experiences of James and his networks were unravelled, and their perspectives revealed two main encounters: decisions and processes on (inclusive) education and connecting with others. James and his networks discussed how he succeeded in regular education and how he adhered to higher educational norms. The narratives highlighted the pressure to ‘pass’, to have a space to belong in social spheres, and to function within social networks. The concept of ‘assemblage’, the entangled gathering of embodiment and relationalities, was helpful in unravelling the complex and contextual conceptualisations of blindness in James’ lived experiences.

Points of interest

• This article presents a personal narrative of the experiences of James, his family, and his friends in relation to blindness.

• This study’s perspective fundamentally assumes that everyone, including people with disabilities, is embedded in several networks of human and non-human elements.

• Disability is not an individual condition; rather, it is something relational and contextual. We want to understand the complexities of the participants’ experiences.

• In James’ networks, educational development in regular education is identified as a life goal that requires the input of everyone and everything.

• For living blindness, James and his networks also identified the relevance of being socially embedded and bonding with peers and friends.

Keywords:

• Contextualisation
• blindness
• networks
• lived experiences
• assemblages

Acknowledgments

The authors’ sincerest gratitude goes to James and the members of his networks for giving voice to their lived experiences. The content of this article was discussed at the online International Conference on Disability Studies (2022), with an awarded 10-min presentation. This study forms part of the doctorate of the first author.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 For visually impaired pupils, there are only two (segregated) special education schools in Flanders, and these are automatically boarding schools because of their location. Basal skills classes focus on basic skills needed in everyday life; for example, tying shoelaces, getting dressed, setting a table. This does not necessarily prepare pupils for higher education, paid employment, societal participation and living alone. The historical conception of children with diagnoses such as blindness is they are better serviced in these schools; they can only function in segregated circuits characterised by care. Blindness is then seen as a disability, which assumes that visually impaired people can only learn basic life skills in exclusionary educational institutions (‘specialised schools for the blind’) and employment is impossible or unnecessary. This is an unusual and highly consequential choice.

Additional information

Funding

This doctorate is funded (since 2020) by a regular PhD grant within the framework of the Special Research Fund of Ghent University.