Marleen Janssen gives the deafblind a voice

Japan, Brazil, Austria, Australia, Germany, Georgia – these are all countries that Marleen Janssen has visited recently or will soon visit. As the only professor in the world who focuses on communication with deafblind people, she has no other option: her contacts live and work all over the world.

_{Text: Bineke Bansema, Communication UG / Photos: Elmer Spaargaren, Kentalis}

Janssen recently moved to Heerenveen, leaving her previous residence Appingedam with a heavy heart. She wanted to live closer to Schiphol, however, since she travels many times a year to meet colleagues at symposia and other gatherings.

Finger spelling

Marleen Janssen always knew exactly what she wanted. When she made a career change in her twenties, she was working as a teacher at Visio, an organization for the blind and partially sighted. She switched to Kentalis, an institute for the deaf and deafblind: ‘In my work at Visio, I sometimes met children who could not hear and see adequately, a group I was very eager to work with. I did have one condition, however, for the switch: I wanted to coach one child who was completely deaf and completely blind.’ In the following five years, she taught a young girl about 800 concepts by means of finger spelling, a system in which you spell words by entering the constituent letters of the alphabet letter by letter in the child’s hand.

Increase collaboration

‘Continuity is very important when coaching people with deafblindness. Nowadays, achieving this is more difficult than before, as many coaches work part-time. In the past, the children often lived in boarding schools and had their own individual coaches. There used to be only one teaching location in the Netherlands. Now, Kentalis has three such locations across the country. However, some parents and professionals are not aware of these locations, or parents want their deaf-blind children to live even closer to home and take them to other schools instead. This is how they disappear from our radar – whereas in the past, it was clear who was deafblind and needed special treatment. For this reason, I believe that it is very important to increase collaboration, not only with the relevant specialized institutions, but also with hospitals and municipalities, so that we can trace deafblind children quickly and offer them the proper support’.

Congenital deafblindness

The Netherlands has about 50,000 deafblind people, mostly elderly people whose vision and hearing are slowly deteriorating. Janssen’s research focuses mainly on congenital deafblindness, for which no actual numbers are known but estimates of which run into the thousands. When Janssen noticed that there were no academic records on making contact with deafblind people, she decided to conduct research alongside her work as a remedial educationalist. In 2003, she gained her PhD in Nijmegen. In the following year, she became assistant professor in Groningen, where she was appointed full professor in 2008.

Woman on a mission

‘Helping the deafblind move on’: that is Janssen’s mission. They often still live in isolation. But what do they need to move on? ‘While the Dutch are frontrunners in terms of research, there is still quite a bit of room for improvement in daily practice in the Netherlands. In Scandinavia, for example, a lot of money is being invested in training the coaches. We could improve in this area.’ In addition to the Master’s degree programme for which she is responsible, she would like to set up an international PhD programme as well as post-Master’s programmes. While applied research must certainly continue, she would also like to enable students to do more fundamental research. In order to allow for this, a special institute for research and education in the field of deafblindness will be opened this autumn: the University of Groningen Institute for Deafblindness (UGIDB).

Jack-of-all-trades

Until recently, Janssen’s position was unique in the world; she was the only professor in the field of deafblindness. The University of Heidelberg also appointed a Professor of Deafblindness this year, who chose professionalization as a spearhead. Janssen: ‘Great! This will enhance the status of the field.’ The fact that she is the only professor in her field in the Netherlands forces Janssen to be a jack-of-all-trades. Alongside conducting research, she is responsible for the Master’s degree programme in Communication and Deafblindness, which attracts around 10 students each year. ‘We have more than 80 alumni, who live and work all over the world. It’s wonderful to have so many students come here and then apply the knowledge gained here in their home countries. But it also saddens me to see them go; I would like to see more of them continue as researchers.’

PhD candidates

Since her appointment, she has supervised seven PhD students. One of them is Saskia Damen. She came from Bartiméus, another institution for the blind and partially sighted, where she had worked with deafblind people as a remedial educationalist. She is now assistant professor at the UG, where she maintains a good collaboration with Koninklijke Kentalis and DB-Connect, the national deafblind network, among other parties. Janssen sees Damen as her successor and is very happy to have one, so that knowledge can be further developed. In addition to research, there is teaching, which takes up about 70% of her time during busy periods. Any work on the two books that she was asked to publish will have to wait until the weekend. As editor, it is her job to approach researchers from all over the world. As much fun as that is, it is just not manageable on weekdays.

Letting go

‘Thankfully I am good at letting go, separating work and leisure. It’s a shame, though, that I had to sell my apartment on Texel. Then again, Callantsoog is not very far from Heerenveen. I really enjoy walking, preferably on the beach or in the north of the country’. Her new home in Heerenveen has not only brought her closer to Schiphol, but also to her family and friends, with whom she would like to spend more time in the coming years.

More information

• University of Groningen Institute for Deafblindness (UGIDB)

• Together, Kentalis and the University of Groningen are organizing the 'Denken in Dialoog' symposium on 21 March 2019