What is Deafblindness

The generally accepted definition of Deafblindness is that persons are regarded as Deafblind “if their combined sight and hearing impairment causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss” (Think Dual Sensory, Department of Health, 1995). Deafblindness can be found in all age groups, including children and young people, but the incidence is greatest in older adults. (DOH – Care and Support for Deafblind Children and Adults Policy Guidance)

There are approximately 400,000 people in the UK who are deafblind, this figure is estimated to increase to over 600,000 by 2030 – mainly due to the increase numbers of older aged adults who will increasingly represent a larger percentage of the population over the next 15 – 20 years.

There are a wide range of people who could be described under the definition ‘Deafblind’ – it includes people with no functional vision and hearing, as well as people who still have some residual vision and hearing. It’s a popular misconception that the term only means people who cannot see or hear anything; although it can be used to describe that particular condition.

‘Dual Sensory Loss’ or ‘Dual Sensory Impaired’ are also terms used to describe a combined sight and hearing loss.

There are further categories under the definition of deafblindness, which attempt to better describe the cause of deafblindness – particularly relevant to the development of communication and language acquisition.

Congenital Deafblind

People are described as congenitally deafblind if they are born with their vision and hearing impairment. The term congenital deafblindness is also used when someone develops their sight and hearing impairments before they have been fully exposed to language; learning to communicate with speech, sign language or other formal communication methods. This can often be as a result of a disease or injury.

Acquired Deafblind

People are described as acquired deafblind if they have developed their vision and hearing loss later in life; after they have developed / been exposed to formal language such as speech or sign language. The majority of people who are acquired deafblind are older age adults. A person may have been born with a singular sensory impairment and acquired a dual sensory loss later in life; or have acquired a dual sensory loss at any stage in their life.

Multi Sensory Impaired (MSI)

The term MSI is used to describe a group of people (mainly used in an educational setting with children) who have a number of different sensory difficulties. As well as vision and hearing – this can include any of the senses and importantly it also covers the processing issues some people experience, which means that although there are no issues with the sensory organs, the brain struggles to decode and organise the messages sent from them.

Impact

Deafblindness is a unique condition, within which every deafblind person is unique. The impact of deafblindness will vary from person to person and critically take into account the person as a whole. Many factors influence how a person with deafblindness experiences life. This will be as wide ranging as age of onset, education, social upbringing and personality. People who are deafblind may use a wide range of communication methods (please click here for further information).

Despite the significant complexities of not having full access to your vision and hearing – people who are deafblind often lead full and richly varied lives. The key to understanding deafblindness is to understand the person who is experiencing it and to develop individualised approaches to overcoming difficulties.

Deafblind UK Chairman, Bob Nolan, who himself is Deafblind, says: “Sadly the incidence of deafblindness is growing in the UK with over 400,000 people now struggling with the everyday challenges of normal life. We want to raise awareness and let people understand that whilst dual sensory loss can be so isolating for so many, it doesn’t have to be. With the right support deafblind people can lead full and active lives and still fulfil their dreams.”

As well as being people who inspire us with their achievements and ability to overcome life’s obstacles, it is also important to add that people who are deafblind can also feel lonely, isolated and can sometimes be some of the most vulnerable people in society. (please click here to learn more about loneliness)

Legal rights

The department of Health issued the ‘Deafblind Guidance’ in 2014 which requires councils in England and Wales to act in a particular way towards its residents who can meet the functional definition stated above.

To find out more about the deafblind guidance click here.

Causes of Deafblindness

There are many reasons that a person may experience deafblindness:

During pregnancy or Complications at birth:

  • a woman may come into contact with a virus or disease or receive and injury that affects the growing foetus
  • an inherited condition, chromosomal disorder or syndrome may be passed on to the child
  • a child may be born prematurely resulting in the sensory organs not developing fully – this may also result in a number of other complex conditions.
  • neurological conditions as a result of a traumatic birth or lack of oxygen

Early years and Childhood:

  • illness caused by a virus or disease
  • inherited conditions not present at birth
  • auto immune diseases

Young adult to older age:

  • non-hereditary conditions and syndromes
  • hereditary conditions or syndromes auto immune conditions
  • illness caused by a virus or disease
  • injury to the eyes, ears, sensory nerves or the brain
  • the ageing process

If you would like to learn more about understanding sight and hearing loss, please click here