Working Life and Acquired Deafblindness

This report examines the factors that promote or hinder participation in working life among people with acquired deafblindness.

The report is part of a broader collaboration. The project was initiated by the Dutch research institution Royal Kentalis, which invited colleagues from Denmark and Sweden to take part so that experiences and findings could be shared across countries and systems. The collaboration has included colleagues from Royal Kentalis and Örebro University, including Marleen Smits, Eline Heppe and Marianne Rorije from Royal Kentalis, and Moa Wahlqvist and Mattias Ehn from Örebro University.

The report is based on qualitative interviews with people living with acquired deafblindness, professionals, and employers. The analysis shows that participation in working life cannot be understood simply as a matter of individual resources, motivation, or determination to remain employed. Participation is shaped through the interaction of personal processes of recognition and coping, structural and institutional conditions, the organisation of work, and the relational quality of working life.

One of the central analytical concepts in the report is double delay. This concept captures how support needs often become visible late in the process, while the response of the system and the workplace also tends to come late. Many people spend a long time compensating for the consequences of deafblindness and adapting through extra effort before the need for support and changes in working life becomes clear. When support is only put in place after a prolonged period of strain, the possibilities for remaining in work may already have been weakened.

The report also points to the importance of what it describes as hidden work. This refers to the often invisible extra work that people with acquired deafblindness carry out themselves in order to make working life function. This may include planning, coordination, energy management, adapting work routines, managing transport, and continuously translating one’s needs to colleagues, managers, and support systems. When this work is carried mainly by the individual, the risk of accumulated burden increases.

Another central finding is what the report describes as benevolent marginalisation. The analysis shows that consideration does not always function as inclusion, even when intentions are good. When an employee is protected, spared certain tasks, or quietly excluded from parts of the workplace community without proper dialogue, the result may be a gradual movement towards the margins of working life. The report therefore argues that support and accommodation must not only be available, but also be dialogue-based and rooted in shared responsibility.

At the same time, the report shows that sustainable participation in working life is strengthened when support is relevant and timely, when work can be organised flexibly, when accommodations are embedded in the organisation, and when workplace communities make it possible to articulate needs without social risk.