New update of landmark definition on deafblindness

Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.

That is the Nordic definition on deafblindness, emphasising deafblindness as a distinct disability rather than simply the sum of separate sensory impairments.
– While many countries still view deafness and blindness as separate conditions, our definition emphasizes the unique challenges that arise from their combination, explains Gøran Andreas Gregor Caspian Forsgren, Senior Adviser at the Nordic Welfare Centre. This perspective is gradually gaining traction internationally, and we’re seeing increasing recognition of deafblindness as a unique disability requiring specialised approaches in support.

Risk factor for physical and mental health

In this updated version, deafblindness is recognised as a risk factor for physical and mental health—a significant addition.
– Experience shows that if adequate support is not given to people with deafblindness, there is a high risk that the individual will develop both physical and mental health problems. It is therefore important that this is now written into the definition, says Helene Engh, Executive director at Swedish NKCDB, The National Resource Centre for Deafblindness, and one of the members of the workgroup.

Multilingual accessibility

The publication presents the definition in English, Danish, Finnish, Norwegian, Icelandic, and Swedish, making it accessible across the Nordic region.
– By providing this definition in all Nordic languages, we ensure that professionals, families, and individuals across our region have equal access to this crucial framework, says Agneta Anderzén Carlsson, pediatric nurse and adjunct professor in healthcare sciences, University Health Care Research Center at Örebro Region Örebro County, and a member of the working group of the Nordic leadership on deafblindness. 

Enhanced commentary

While the core definition remains unchanged from previous versions, the publication includes significant additions to the accompanying commentary. These enhancements provide greater clarity on:

• The impact of timing (congenital, acquired, or age-related)
• The role of tactile sense in compensation
• The importance of specialized support services
• The right to full participation in society

Regional cooperation for rare population

The Nordic countries’ collaborative approach is particularly crucial given the small population of individuals with deafblindness in each country.
– By working together, sharing experiences, and building upon each other’s knowledge, we have been able to improve both knowledge and practice, to advance support services across our region, Forsgren emphasizes.

An evolving definition

The definition will continue to evolve through a committed four-year cycle of review and publication by the Deafblind field at the Nordic Welfare Centre, in cooperation with the Nordic Leadership Forum on deafblindness.
– This isn’t a static document. Our understanding of deafblindness continues to grow, and our definition must reflect these advances while maintaining its practical utility for professionals in the field, says Forsgren.
The publication, available through the Nordic Welfare Centre, serves as a cornerstone document for practitioners, researchers, and policymakers working with individuals with deafblindness across the Nordic region and beyond. It’s a living document that hopefully can influence how we design and implement support services across the Nordic region.