Nordic networks collaborating on a holistic approach to deafblindness

The Nordic countries have long played a significant role in shaping deafblind education through decades of collaboration and innovation.

– We are standing on the shoulders of pioneers. I’ve been in the field since ’95, and the first pioneers I met were also standing on the shoulders of others, said Henriette Hermann Olesen, leading manager, Region Nordjylland, Denmark and board member at Deafblind International, reflecting on the field’s development as she opened the network seminar with a lecture on the history of the field.

This statement underlines the long legacy of advocacy, learning, and sharing among Nordic countries with similar challenges and values in supporting deafblind communities.

An evolving definition of deafblindness

The unique and complex nature of deafblindness has presented distinct challenges for educators and healthcare professionals.

– Deafblindness is neither a diagnosis nor a syndrome—it includes a wide range of syndromes and conditions, explained Henriette Hermann Olesen.

The Nordic countries were among the first to create a shared definition in 1980, understanding the need for both consistency and flexibility in addressing such a diverse disability. A new revision of this definition is set to be launched soon.

Early international connections

The foundation of deafblind education was built on early international collaboration, a commitment that has evolved into today’s Nordic and European networks, where practitioners and researchers continue to share insights and best practices.

Through initiatives like the Nordic Education Centre, established in the 1980s, and by hosting international conferences, the Nordic countries have demonstrated a steadfast commitment to advancing deafblind education.

The Nordic approach, deeply rooted in shared knowledge and continuous adaptation, stands as a model for international collaboration in the field of deafblind education.

– The Nordic countries have played a significant role in my own learning and knowledge development, said Dr. Paul Hart, former Head of Operational Support Practice Development & Quality, Practice, Sense Scotland, as he wrapped the seminar up with an analysis of the workshop.

Revolutionising perceptions through innovative video analysis

People with deafblindness possess significantly greater communicative and cognitive abilities than previously assumed, according to an in-depth analysis conducted by six Nordic networks. Through advanced video analysis, the networks have documented how individuals with deafblindness develop sophisticated communication strategies and demonstrate strong cognitive abilities when given the right support.

All the networks analysed the same, short clip, of Olle showing how he interacted with a partner playing a clapping game. With less than two minutes this clip generated a vast amount of analysis and views, opening to a multifaceted view on Olle and his personality.

The video of Olle can be found in this publication by the Swedish NKCDB at page 13 (video 2.2.d).

All the perspectives

Paul Hart provided a high-level summary of the key points from the presentations at the end of the network seminar. These were some of the highlights, showing the width of the analysis taking place:

• The Communicative Relations network highlighted the dialogical nature of communication, emphasising the importance of viewing it as a partnership. The Cue Model, Diamond Model, and related concepts illustrated how communication and meaning emerge through interaction.
• The Tactile Language network demonstrated increasing confidence in recognising tactile communication as a genuine language, tracing its evolution from iconic gestures to more conventionalised signs. This sparked reflections on the typical development of new languages.
• The CHARGE Syndrome network focused on sensory integration, emotional regulation, and the importance of scaffolding development. They noted how individuals displayed strong narrative skills, categorisation abilities, and the capacity for introducing surprise and novelty.
• The Self-Regulation network emphasised the need to move beyond outdated views of “random, purposeless movements” and instead recognise the purposeful strategies individuals employ to optimise information intake and engagement.

  

• The Cognition network took an asset-based approach, highlighting individuals’ bright understanding of others, effective working memory, and ability to reference the past and anticipate the future.
• The Usher network adopted a life perspective with the individual at the forefront. They used the ICF model, which takes a bio-psycho-social approach, allowing for a more holistic understanding of a person’s medical aspects, personality, outlook, and life experiences, and how these shape their condition. Crucially, the ICF model also stresses society’s responsibility to provide adequate support and accommodations.

Dr. Hart wove in observations about the importance of an interdependent, partnership-oriented mindset, as opposed to solely focusing on independence. He also highlighted how the various analyses collectively painted a portrait of a capable, authentic human being with much to teach the professionals.

– The individual is, first and foremost, a human being with a range of strengths, talents and potential, rather than merely a collection of diagnoses or deficits, Hart summarised the key takeaway.

Focus on individual strengths

– The key insight is that we need to see the person first—as a human being with strengths, talents, and potential—rather than a collection of diagnoses or deficits, summarised dr. Paul Hart.

He emphasised the importance of a partnership-oriented approach over a one-sided focus on independence.

By combining medical, psychological, and social perspectives, the networks have shown that individuals with deafblindness can develop advanced narrative abilities, categorisation skills, and a strong understanding of others when given the right support. This paradigm shift from a deficit-focused to a strengths-based approach marks a revolution in the field, which will influence the future of support services.

– After listening to all the analysis from all the networks, Olle becomes a new individual showing competences and potential that really amazes us! We need to apply this wisdom in each and every encounter we have when meeting persons with deafblindness, said Gøran Andreas Gregor Caspian Forsgren, senior adviser at the Nordic Welfare Centre.

Will result in a publication

The findings from the seminar will be compiled into a comprehensive publication, set to be released next year. This publication will also be showcased at the major Nordic conference in 2026, which will be held in Copenhagen, further highlighting the collaborative efforts and significant advancements made in the field of deafblind education.

– When combining our specialised competence and knowledge and applying all of these in focusing on the individual, we truly see all the potential that the person with deafblindness holds, said Gøran Andreas Gregor Caspian Forsgren, senior adviser at the Nordic Welfare Centre.