‘Deafblind people often live in isolation’

Marleen Janssen has held the world’s only chair of ‘Congenital and Early-Acquired Deafblindness’ since 2008. Thanks to her academic endeavours it is becoming more and more clear how the lives of people who are both visually and hearing impaired can be improved. However, too little is being done for them in practice, she thinks.

Most people cannot even begin to imagine what it is like: how the world is experienced by people who are completely – or almost completely – blind and deaf. Marleen Janssen, who has often had to put herself in these people’s shoes in her professional work, can imagine it. ‘It’s very scary and very awful. They often feel abandoned and misunderstood and, what is more, they are completely dependent on others’, explains the Orthopedagogy professor at the University of Groningen.

Compassion

The ‘Chair of Congenital and Early-Acquired Deafblindness’ that Janssen has held at the University of Groningen since 2008 is unique in the world. Janssen appears to be driven by compassion. During a previous career as a care worker with deafblind people she noticed that there were no set guidelines for making contact with these people and that common problem behaviour such as aggression seemed to be directly related to the difficult relationships they had with others. She decided to conduct research into this disability towards the end of the 1990s. In 2003 she gained her PhD at the Radboud University Nijmegen with a thesis on harmonious interactions with the deafblind.

According to ‘official’ figures, there are a few hundred people with congenital deafblindness in the Netherlands. Marleen Janssen estimates that the actual amount is somewhere in the thousands. ‘Deafblindness is still not always recognized as such and so is often treated as a mental disability or autism, which is disastrous for these people’s well-being and prevents them from fulfilling their potential in life. In many other cases, deafblindness is correctly diagnosed, but the care offered is far from sufficient due to understaffing, too many staff changes and a lack of the right knowledge.’

Finger spelling

You can tell that Janssen has been accustomed to working with mentally disabled, deaf and deafblind people for years: she continuously uses hand gestures to emphasize her plea for better support for people with this severe disability. She looks back on her time at the institute for deafblindness with pleasure. One of her projects there involved working for five years (in an ideal one-on-one situation) with a deafblind girl who was seven when they started. She used tactile communication to teach the child everyday tasks such as getting dressed, as well as skills such as finger spelling. ‘And we went on lots of little excursions, for example to the supermarket. Slowly but surely she became more aware of the world around her.’

Janssen borrowed this approach off colleagues who had had success with it. ‘It boiled down to treating this girl like a mother would treat a “normal” child who has not learned to talk yet. Mothers will take children outside, talk and sing to them, imitate the sounds they make and learn to understand them by watching how they react to all manner of stimuli.’ However, she also realized that by no means all deafblind people – and certainly not adults with deafblindness – receive such a degree of loving care.

Six theses

Janssen has been working as a researcher for over ten years now and has been very successful. In 2007 the first cohort of students of the University of Groningen were awarded a Master’s degree in deafblind studies. This year she is supervising no less than six theses on the subject by PhD candidates. Their research projects build to some extent on the ‘Contact’ method that Janssen developed during her own PhD research in collaboration with Kentalis, an institute for the deaf and deafblind specialized in the diagnosis, care and education of people with these disabilities.

The principle behind ‘Contact’, Janssen explains, is that deafblind people can only communicate their feelings and thoughts if they feel they are supported by the people they know well. ‘Without resilient and safe relationships with others, they will not be able to develop a method of communication and so they will not be able to achieve their potential as humans.’ This is why, she argues with conviction, every deafblind person should be able to fall back on their own personal ‘communication specialist’: someone who has been specially trained to recognize what these people need. ‘To date, however, Denmark is the only country lucky enough to have such a system.’

Of course, the ability of a deafblind person to learn a language is also dependent on other factors, such as the cause of their disability and the extent to which they can – or could – hear and see. The age the correct diagnosis was made is also very important. Some deafblind people can go to normal secondary schools, while one woman, the American Helen Keller (1880-1968), even earned a PhD in linguistics. Many deafblind people have normal intellectual capacities, Janssen explains. ‘But these capacities will remain hidden if feelings of loneliness and frustration dominate.’

Training care workers

Research by Marga Martens has since demonstrated that the method developed by Janssen helps decrease negative emotions and increase positive feelings. Martens hopes to be the first of the six deafblindness researchers to be granted their PhD on 30 October. Her PhD research generated knowledge that she used to develop a special training programme for professionals. By watching video recordings of contact moments together with a coach, care workers of three different institutions learned how to clearly acknowledge the gestures and other signals of deafblind people and how to interpret these.

Martens: ‘A deafblind person will not immediately lay their hand on their stomach if they have stomach ache. They will only do so once they know someone is “listening” to them. A care worker can show a deafblind person they are “listening” by, for example, imitating the rhythm, duration and intensity of their gestures. By taking turns making the same gestures, the care worker and the deafblind person will become attuned to each other. Only if this interaction is successful will it be possible to share information and interpret this correctly.’

Martens, who works with Kentalis in Sint-Michielsgestel, is now developing a training programme for coaches based on this insight. Six participants are currently being trained in a pilot programme. Marleen Janssen: ‘I hope that eventually all institutions will give their staff this training. In light of the cutbacks that are affecting the organizations for the deafblind, however, I fear for the worst.’ In fact, she is outraged: ‘I think it is nothing less than criminal that less rather than more money is being made available to prevent problem behaviour and offer deafblind people a more humane existence. And this while better care will only lead to less costs in the long run!’

Curriculum vitae

Marleen Janssen (1955) studied Orthopedagogy in Utrecht and spent many years working at the only deafblind school in the Netherlands, Kentalis-Rafaël in Sint-Michielsgestel. In 2003 she gained her PhD at the Radboud University Nijmegen with a thesis on harmonious interactions with the deafblind. She is an Orthopedagogy professor at the University of Groningen, with a chair in Congenital and Early-Acquired Deafblindness. The Chair is funded by Royal Dutch Kentalis – where Janssen also holds the position of Special Education director of the Deafblindness Knowledge Centre – and a number of other organizations. > www.rug.nl/inbeeld/mjanssen Marga

Martens (1962) followed higher professional education for youth welfare work and joined Kentalis in Sint-Michielsgestel in 1986. She earned degree certificates in Special Education for the Hearing Impaired in 2007 (A and B levels) and a Master’s in Communication and Congenital Deafblindness at the University of Groningen. She will defend her PhD thesis at the University of Groningen on 30 October 2014. Her thesis is entitled The intervention model for affective involvement and its effectiveness – Fostering affective involvement between persons who are congenitally deafblind and their communication partners. Her PhD research was funded by Kentalis and supervised by professor Marleen Janssen of the University of Groningen.

Source: Broerstraat 5, October 2014