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 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 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 put herself in these people’s shoes in her professional work, can imagine it. ‘It is very scary and very awful. They often feel completely abandoned and misunderstood, and, what is more, you are completely dependent on others’, explains the Orthopedagogy professor at the University of Groningen.
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 and when people who become deafblind at an older age are included the total exceeds 40,000. ‘Deafblindness is still not always recognised 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, the care offered is far from sufficient due to understaffing, too many staff changes and a lack of the right knowledge.’
You can tell that Janssen has become accustomed to working with intellectual disabled, deaf and deafblind people for years: she continuously uses hand gestures to emphasise 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 years old when they started. She used tactile communication to teach the child everyday tasks such as getting dressed, as well as skill 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 from colleagues who had has success with it. ‘It boiled down to treating this girl like a mother would treat a “normal” child who has not learnt 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 reacts 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.
Janssen has been working as a researcher for over ten years and has been very successful. In 2007 the first cohort of students were awarded a Master’s degree in deafblind studies, and in the next six months no less than six theses will be published on the subject by PhD candidates whom she is supervising. Their research projects build to some extent upon the ‘Contact’ method that Janssen developed during her own PhD research in collaboration with Kentalis, an institute for the deaf and deafblind specialized in diagnostics, 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. Janssen: ‘Without resilient and safe relationships with others, they will not be able to develop a method of communication and so will not be able to fulfil their potential as humans.’ This is why, she argues with conviction, all deafblind people should be able to fall back on their own ‘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.’
Research by Marga Martens has since demonstrated that the method developed by Janssen helps decrease negative emotions and increase positive feelings. Martens was the first of the six deafblindness researchers and defended her PhD thesis 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!’
Professor dr H.J.M. Janssen
Chair of Congenital and Early acquired Deafblindness
University of Groningen
Tel: 0031 5036 36575