Deaf-blindness: loosing both sight and hearing

Helen Keller, who suffered from deaf-blindness, was able to lead a self-determined life, together with her teacher and assistant Anne Sullivan. (Photo: Library of Congress)

The combination of a sight and a hearing impairment is known as deaf-blindness. Some people affected by deaf-blindness are completely blind and deaf, while others can still enjoy partial sight and/or hearing.

Whereas people with limited hearing or vision can usually, at least partially, compensate their disability by means of their other physiological senses, this is hardly possible for people with a double sensory disability. The deaf-blindness affects almost all aspects of life, and can have a considerable impact most especially on perception, communication and autonomous mobility. The individuals concerned often need aids that are specifically adjusted to their own situation.

Congenital and acquired deaf-blindness

Basically there is a distinction made between congenital and acquired deaf-blindness. Congenital deaf-blindness occurs when the double sensory disability is present at birth or appears in early childhood. An estimated 358,000 people in the UK are deaf-blind, while this figure is expected rise to half a million by 2030*.

Acquired deaf-blindness occurs when the double sensory disability develops after the stage of language acquisition. Helen Keller (1880-1968) is perhaps the most well-known person worldwide with acquired deaf-blindness – at the age of 18 months, she suffered complete loss of sight and hearing due to meningitis. Despite this impairment, she managed to complete her studies and traveled around the world as an ambassador for people with deaf-blindness.

Causes

The causes of deaf-blindness are very diverse, whether it is congenital or acquired. As regards congenital deaf-blindness, rubella contracted during pregnancy used to be designated as one of the main causes. However, it is today generally acknowledged that very premature births as well as various genetic disorders such as the CHARGE syndrome can cause deaf-blindness in newborns.

Apart from the age-related double sensory impairment, Usher syndrome is the most frequent cause of deaf-blindness. Usher syndrome is a congenital hearing disorder, which in the course of time evolves into an insidious vision impairment.

Braille writing makes reading possible for the deaf-blindly impaired. (Photo: Ralph Aichinger/ pixelio.de)

Communication forms

The different conditions which people with deaf-blindness are confronted to are most visible in the way they communicate. Means of communication that are based on an understanding of language are suitable for those who suffer from acquired deaf-blindness impairment.

The Lorm alphabet is a technique through which words can be spelled out, while with the fingerspelling alphabet, individual letters are formed by positioning the fingers in a specific way (for example, a L is formed by stretching the thumb and the index at a right angle). As regards the Lorm alphabet, specific points situated on the palm of the hand correspond to defined letters (for example, the tip of the thumb stands for A, while the tip of the index stands for E). While inexperienced people may find this difficult to comprehend, those with an acquired deaf-blind impairment can learn to communicate with this language at a similar rate as someone learning a spoken language.

A further possibility consists in learning the Braille writing. This form of communication is characterised by raised dot patterns – each pattern representing a letter or a combination of letters, which are then “read” with fingers.

Finally, tactile gestures can also be used as a means of communication. With this technique, gestures are communicated through hand contact between two people, i.e. formed by one person and felt by the other. The “hearing” hands are on top, the “speaking” hands are below.

Tactile symbols or tactile gestures are very helpful

For people with congenital deaf-blindness, however, the most appropriate forms of communication are those that don’t require an understanding of letters. In particular, concrete, tactile symbols or gestures have proven to be very helpful, for example as regards activities, people or places. But also tools such as a tablet or other electronic tools can be equally very valuable for people with a congenital deaf-blindness impairment. It should also be kept in mind that those born with deaf-blindness also often suffer from a cognitive impairment. Communication forms such as tactile gestures are therefore often simplified.

People with deaf-blindness impairment all share one thing: they require specific assistance in almost all areas of life. Helen Keller was able to lead a self-determined life only because she always had someone to accompany her, who could act as a bridge between her and other people or the outer world. In some cases, a special assistance for the deaf-blind can be organised – however, this form of support is not widely available and must usually be fought for.

* Source: sense.org.uk

Text: Eva Keller – 03/2017
Translation: MyH (text slightly modified) – 08/2017
Photos: Library of Congress, pixelio.de