Deafblindness: a 50-year journey

My career parallels the evolution of the field of deafblindness. Over many years, as both a practitioner and a researcher, I have been actively engaged in addressing the numerous challenges experienced by people with deafblindness.

I initially worked with children who were deafblind due to Congenital Rubella Syndrome. On the basis of my experience and research data, I developed The van Dijk Curriculum.

The efficacy of this approach has since been supported by the results of my assessment procedure.

My focus of attention gradually shifted to special etiological groups, such as CHARGE Syndrome and Usher Syndrome, and children born prematurely.

More recently, I am challenged to bridge the gap between the findings of neuro-biological research and educational praxis. The first results of this effort are demonstrated in a new DVD called Let’s Talk Limbic, which investigates the role of the emotional brain in learning and behavior.

Jan va Dijk: "in 50 years an enormous increase of DB knowledge"

The education of children with deafblindness began on a large scale after the rubella pandemic of 1963-1965. It is estimated that in the United States alone, about 10,000 children who were born deafblind because of Congenital Rubella Syndrome needed a special curriculum. Educators outside the U.S. also confronted the requirements of children with this dual sensory impairment, and recognized the importance of developing programs that would meet their specific needs.

Educators from many different countries met to discuss ways of helping these children. Perkins School for the Blind was one of the few places in the world that established a formal teacher-training program for deafblind education. This organization had a long history of teaching children with deafblindness, including Laura Bridgman and Helen Keller.

In the Netherlands, when the first children with deafblindness were brought to the attention of the Board of Instituut voor Doven (St-Michielsgestel), it was logical to send the person in charge of the new Deafblind Department to Perkins. That person was me. I studied how its great teachers, such as Samuel Gridley Howe (Laura Bridgman’s teacher) and Anne Sullivan (Helen Keller’s teacher), taught their students to interact and communicate with the outside world.

As in other countries, many of our students in the Netherlands had additional problems. Some were autistic, or had autistic-like behaviours. Others were intellectually disabled, or exhibited challenging behaviours. They needed a more detailed curriculum. In cooperation with a gifted teacher, Mary Jurgens, and with contributions from the entire Deafblind Department team at St-Michielsgestel, I developed a curriculum for children with deafblindness which took into consideration all of these additional disabilities. (Read more in: Jan as Developer.) The curriculum was implemented in the Deafblind Department, and its approaches, especially the use of calendar systems and object cues, attracted worldwide attention.

For many years, the American Foundation for Overseas Blind, under the inspiring directorship of Dr. Jean Kenmore, brought together teachers from all over the world, to observe how the ideas of “The van Dijk Approach” were put into practice.

It was thought that the principles on which the curriculum was built needed a stronger research foundation. During two extended stays in Australia (1976 and 1990), I had the opportunity to study a large sample of children with Congenital Rubella Syndrome. (Read more in: Jan as Researcher.) These studies clarified each child’s unique strengths and weaknesses. To bring a child's individual characteristics to the surface, I felt that thorough assessment was necessary.

The assessment I had in mind looked at traditionally important areas, such as communication and interaction, but also challenging behaviors and learning problems. Apparently, I had the skills needed to carry out this kind of assessment in a child-friendly way, by following the child’s interests. My colleague, Dr. Cathy Nelson, substantially contributed to the scientific foundation of The van Dijk Approach to Assessment.

As immunization against the rubella virus became more prevalent, this cause of deafblindness disappeared from most developed countries. Other etiologies, however, came to the fore, particularly rare syndromes, such as CHARGE Syndrome and Usher Syndrome, and prematurity. As new techniques for testing hearing and vision loss were developed, it became possible to research the identification of deafblindness in special groups, such as people with severe intellectual disabilities. (Read more in: Jan as Researcher.)