Condition: deafblindness

It is estimated that there are approximately 35,000 deafblind people in the Netherlands. Most people with this condition were not born deafblind and only develop it later in life. Deafblindness does not always mean that someone is completely blind and deaf. This may result in limited vision and/or hearing. What exactly is deafblindness and how should a deafblind person communicate?


Deafblindness occurs in approximately one in ten thousand people. In total, there are approximately 35,000 people in our country who have this condition. A large proportion of deafblind people develop this condition at a young age or later in life. Deafblindness does not automatically mean that someone is completely deaf and blind. This concerns the following disabilities: deaf-visually impaired, blind-hearing-impaired, visually impaired-hearing-impaired or completely deaf/blind. People who are deafblind are often thought to also have an intellectual disability, but this does not necessarily have to be the case. There is often a delay in development due to the limitations.

Congenital deafblindness

In congenital deafblindness, deafblindness is already present at birth. Many syndromes involve a genetic predisposition that is already expressed at birth. An example of a congenital syndrome is rubella syndrome , which is caused by the infectious disease rubella in a pregnant woman. If a woman becomes infected with this before the fourth month of pregnancy, there is a high risk of congenital defects in the child, including eye and hearing defects.

Acquired deafblindness

In acquired blindness, the condition developed after birth. Children born prematurely can also become deaf-blind. In young or young adults there may also be a syndrome such as: Usher Syndrome and Neurofibromatosis type 1 . Usher Syndrome is a congenital condition that causes hearing loss/deafness and visual impairment/blindness. Neurofibromatosis is a genetic disorder caused by a mutation in the gene for the protein neurofibromin NF1. In addition, deaf-blindness can be caused by trauma or illness, such as meningitis.

Deafblind due to old age

There is also a form of age-related deafblindness in the elderly, often in old age, in which vision and hearing slowly deteriorate until deafblindness occurs. Deaf elderly and blind elderly people in particular are at increased risk of becoming deaf-blind.


The way in which a deafblind person can communicate depends on the extent to which residual hearing and vision are still present. Sometimes there is still just enough hearing or sight to be able to communicate. If this is no longer possible, the deaf-blind person must rely on four-handed sign language or an adapted manual alphabet or Braille. The background and preferences of the deaf-blind person are decisive. Nowadays there is an implant called a Cochlear implant that allows the deaf-blind person to hear environmental sounds and greatly improve the quality of life.

Four-handed sign language

Four-handed sign language uses the same gestures as regular sign language in the Netherlands, but the hands of the conversation partner are held loosely so that you can feel what the other person is signing. Most gestures can be felt as clearly as they would normally be seen by a deaf person. For the gestures where the mouth image is normally used, a modified gesture is used.


A child born deaf-blind cannot simply learn a language. Establishing a bond with someone else is more difficult. The child can feel, hold, smell and taste. These are the starting points for developing communication. The child can learn to share experiences with the caregiver. They can spontaneously make their own gestures so that it is clear to the caregiver what the child means. For example, you can teach a child that when he feels a shoe he is going outside. Parenting and education require a lot of attention so that a trusted contact can be built up and a way of communication can be established. The child usually has a developmental delay due to the disability. It is therefore important to continue to stimulate development later in life.

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