Work and Invisible Disabilities: Practices, Experiences and Understandings of (Non)Disclosure

Maria Norstedt

doi:10.16993/sjdr.550

Abstract

Invisible disabilities involve dilemmas that differentiate them from visible disabilities. However, little is known about the situation persons with invisible disabilities face at work, as empirical studies are scarce. The present article contributes in-depth knowledge of practices, experiences and understandings that affect the work situation for people with invisible disabilities in a Swedish context. The article draws on qualitative, in-depth interviews with 10 persons with invisible disabilities and seven persons who – in their professional work as employers, HR managers, medical doctors or psychologists in the occupational healthcare – regularly have dealings with persons with invisible disabilities. The analysis shows how practices, experiences and understandings regarding disclosure differ between the two groups of informants – differences that lead to dilemmas for the persons with invisible disabilities. These results indicate that persons with invisible disabilities are in a vulnerable position despite the fact that working life in Sweden is relatively well-regulated.

Highlights

An invisible disability is ‘one that is hidden so as not to be immediately noticed by an observer except under unusual circumstances or by disclosure from the disabled person or other outside source’ (Matthews 1994: 7).1 Persons living with invisible disabilities experience dilemmas that those living with visible disabilities do not, such as having to decide whether, when and what to disclose as well as to whom
With respect to disability studies and working life research, the present article contributes with critical perspectives on disclosure by showing that, despite employee protection laws and the rather well-regulated working life in Sweden, persons with invisible disabilities are in a vulnerable position in the workplace
The persons in the present study who had disclosed their invisible disabilities felt that they had been met by and treated differently than their co-workers. This result is in accordance with international studies showing that respondents who reported disclosure experienced negative long-term consequences in their work life, fewer reported that their immediate experience of disclosure was negative

Summary

Introduction

An invisible disability is ‘one that is hidden so as not to be immediately noticed by an observer except under unusual circumstances or by disclosure from the disabled person or other outside source’ (Matthews 1994: 7). Persons living with invisible disabilities experience dilemmas that those living with visible disabilities do not, such as having to decide whether, when and what to disclose as well as to whom. The present article aims to contribute in-depth knowledge on the dilemmas persons with invisible disabilities face in the Swedish working life by drawing on results from a larger study. My theoretical understanding is that individuals’ scope for action in his/her everyday life is influenced by his/her experiences, and by interactions and social factors such as institutional practices and discourses (Norstedt 2015, 2017; Smith 2005, 2006) This requires focusing on persons with invisible disabilities and representatives from different workplaces who encounter people with invisible disabilities on a professional basis. As I will show, different understandings of disclosure existed between the two groups These results need to be understood against the background of: 1) a changed working life globally as well as in Sweden and 2) laws aimed at protecting the rights of persons with disabilities

Methods

Discussion

Conclusion