Congenital and acquired deafblindness
Generally, there is a distinction made between congenital and acquired deafblindness. Congenital deafblindness refers to cases when the double sensory impairment exists from birth or since early childhood. It's difficult to say how many people are affected by this disability in Uganda.
Acquired deafblindness refers to cases where the disability initially develops after the acquisition of speech. Helen Keller (1880-1968), who became completely blind and deaf at the age of 18 months due to meningitis, is considered the most famous person with acquired or complete deafblindness. Despite her handicap she mastered her studies and travelled the world as an ambassador for people with deafblindness. In [partner country x] around [x amount] people are affected by age-related deafblindness.
Causes of deafblindness
The causes are diverse for both acquired and congenital deafblindness. In the past, the main cause of congenital hearing impairment was rubella during pregnancy. Today, very early premature births and various genetic syndromes such as CHARGE syndrome are the main causes of deafblindness in newborns. Besides age-related impairment, Usher syndrome is the most common cause of acquired hearing loss. This is a congenital hearing impairment to which a gradual reduction in vision arises over the years.
Modes of communication in deafblindness
The different circumstances of people with congenital and people with acquired deafblindness are also clearly evident in terms of their modes of communication. Means of communication based on an understanding of speech are suitable for people with acquired hearing loss.
Words can be spelled with the finger alphabet or Lorm alphabet. In the finger alphabet, each letter is formed by a certain position of the fingers (an L, for example, is formed by spreading the thumb and index finger at right angles to each other). In Lorm, defined points on the palm of the hand correspond to certain letters (for example, the tip of the thumb for A or the tip of the index finger for E). Although difficult to imagine for untrained people, people with acquired deafblindness can communicate with these communication tools at a pace similar to that of spoken language.
Another option is Braille, which is widely used in the blind community. This consists of tactile dot patterns on paper; each pattern represents a letter or a combination of letters that Braille-competent people can read with their fingers. Finally, tactile sign language is used. Here, signs are formed by one person and felt by the other in direct hand contact between two people: the hearing hands are on top, the speaking hands are on the bottom.
Tactile symbols or signs are helpful
For people with congenital deafblindness, on the other hand, forms of communication that do not require an understanding of letters and sentences are more suitable. In particular, representational tactile symbols or tactile gestures, whether for activities, people or places, are helpful. Electronic aids also prove extremely useful in communicating with people with congenital deafblindndess. People with congenital hearing loss often also have a cognitive impairment. Forms of communication such as tactile signing therefore simplified.
One thing is common to all people with deafblindness: they need specific support in almost all areas of life. Helen Keller was able to lead a self-determined life not least because she always had a companion by her side who was a bridge to other people and to the world. In individual cases, specially trained deafblind assistants are financed today, yet this form of support is not yet a matter of course and has to be fought for.