Acquired deafblindness

Deafblind Scotland works with adults who have become dual sensory impaired later in life – this is called acquired deafblindness. Those with acquired deafblindness fall into three main groups:

1. People who are born deaf and later lose their sight. This may be as a result of Usher Syndrome, which is a major cause of deafblindness.

2. People who are born blind and later lose their hearing.

3. People who lose both sight and hearing in later life.

There is no accepted definition of deafblindness to which everyone subscribes. However, the most commonly used definition is the European one:

“Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility.” Breaking Through Report (1988)

In 2005 as part of the joint futures working group an edata set was agreed for use in identifying deafblindness.

The terms “deafblindness,” “dual sensory loss,” “combined sight and hearing loss” are interchangeable.

There are other ways of defining deafblindness. The terms people might use to describe themselves are:

• deaf with a visual problem
• blind with a hearing problem
• partially sighted, partially deaf
• having Usher Syndrome
• deafblind
• dual impaired
• dual sensory impaired
• hard of hearing with sight loss
• a hearing aid user with a sight problem
• blind and hard of hearing

One severe impairment e.g. severe hearing loss accompanied by partial sight or moderate sight loss still constitutes deafblindness. The reason the later or secondary loss only requires to be moderate before compounding effects are felt is that the second sense has been relied on to compensate for the first loss. Normally a profoundly deaf sign language user who becomes partially sighted will have inherent problems with communication, access to information and mobility. In a similar manner a hard-of-hearing person who has always lipread, when vision deteriorates at all will have problems. Equally a blind person who has relied upon sharp hearing will have real problems if hearing substantially deteriorates.