Due to a lack of knowledge, many deafblind people in the Netherlands are mistakenly treated as if they can hear and see. This leads to serious emotional and behavioural problems. But there’s much to be gained from more research and more knowledge transfer. When they are properly supported, deafblind people can even develop a fully-fledged language. This is what Prof. Marleen Janssen will be asserting in her inaugural lecture on 17 February 2009 at the Faculty of Behavioural and Social Sciences of the University of Groningen.
Marleen Janssen is the first professor in the world who will be concentrating specifically on communicating with the deafblind. ‘There is plenty of research into communicating with the blind and the deaf but virtually no attention is paid to the deafblind. We are just not aware of their potential.’ In addition, because the knowledge available from actual practice is not properly recorded or passed on, a great deal of expertise is being lost. Janssen: ‘We’ve known for a hundred years what deafblindness is, but the field has barely developed in a scientific sense in all that time. That’s what I want to change, and change fast.’
There are currently about 35,000 deafblind people living in the Netherlands. Some of them were born deafblind, others became so at a later date. About 1 in 100,000 children is born deafblind. Deafblindness does not automatically mean that someone is completely deaf and totally blind – it includes all the variants of the combined disability: deaf-visually impaired, blind-auditory impaired, deafblind, visually and auditory impaired. Janssen’s research concentrates on congenital and early acquired deafblindness.
Research has revealed that a significant proportion of the deafblind group is mistakenly treated as if they can hear and see. The difference between deafblindness and a serious mental disability or autism is often hard to see because communication is so difficult. If no optician or otologist is involved, then misunderstandings can occur. Janssen: ‘The way that someone dresses themself, or moves, can often provide clues that he or she is actually very intelligent. Carers need to be open to such signals. Only once that is achieved can you begin to realise how much potential a deafblind person has.’
With ‘fourhanded sign language’, where the deafblind and their carers exchange hand signs, fully-fledged communication can be created, states Janssen. A ‘vocabulary’ of two thousand or more signs is possible in some cases. Anyone who thinks that when a deafblind person knows a few hundred signs that that is enough is mistakenly keeping them mentally disabled, is Janssen’s view. ‘Once they learn to communicate, the deafblind can turn into completely different people and learn how to enjoy life again. That’s why you have to keep improving the communication – you must never give up.’
Carers have to learn how to use ‘tactile strategies’ better, is the professor’s opinion. Janssen: ‘We have to get the better of our Dutch standoffishness. Communicating with the deafblind means carefully touching an arm to let them know you are there, taking each other’s hands, waiting for an initiative from the deafblind person, maintaining contact, for example by sitting next to each other with the thighs touching. And always keeping your hands ready.’
Five PhD students are currently researching communication with the deafblind in Janssen’s department, as well as ways to improve it. They are working intensively with the large medical institutions Keg-Viataal and Bartimeus. In addition to research in her own field, orthopedagogics, Janssen also wants to initiate cooperation with other disciplines. ‘I want to research in as much detail as possible the effects the interventions of carers have on the deafblind. Which parts of the brain do they use? How do they create a picture of reality? I hope to be able to find answers to these kinds of questions together with neuroscientists. I want to research the language capacity of the deafblind together with linguists, as well as the potential of fourhanded sign language.’
Marleen Janssen (Breda, 1955) studied Orthopedagogics in Utrecht and worked for a long time at the only deafblind school in the Netherlands, Viataal-Rafaël in Sint-Michielsgestel. In 2003 she gained her PhD at the Radboud University Nijmegen with a thesis on harmonious interactions with the deafblind. In March 2008 she became associate professor of Orthopedagogics at the University of Groningen, specializing in Congential and Early-acquired Deafblindness. The title of her inaugural lecture is ‘Deafblindness and communication, from an orthopedagogical standpoint’.
More information: Prof. Marleen Janssen, tel. 050-363 6575 or (050) 363 6566 (secr.), e-mail: firstname.lastname@example.org
- The full text of the inaugural lecture is available under embargo from the Communication Office, tel. 050 -363 4444, e-mail: email@example.com
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