Deaf & Blindness

Deaf Blind UK

What Is Deafblindness?

Deafblindess is a term which describes the condition of having an impairment of both your sight and hearing to varying degrees. Living with deafblindness is very challenging as the combination of the two impairments creates a unique and severe disability. It's common for deafblind people to experience communication problems, mobility issues and problems with accessing information. However it's important to note that the needs of a person suffering from deafblindness will vary depending on their age and the type of deafblindness they experience.

People suffering from deafblindness will require different services and have different needs than those suffering exclusively from blindness or loss of hearing. This is due to the fact that those suffering from deafblindness can't use one sense to compensate for the loss of the other.

Communication

People suffering from Deafblindness can communicate in a number of different ways. Again, this differs depending on the age of onset, the type of deafblindness and what resources and support they have available. It's common for someone who grew up deaf and suffered from vision loss in later life to use a type of sign language. Similarly those who grew up blind and lost their hearing in later life usually use a tactile mode of their spoken or written language. The main methods of communication include:

Using any residual hearing or sight - Such as speaking clearly, using hearing aids, being able to use sign language despite having restricted vision and using writing in a large print.
Tactile signing - Such as sign language or a manual alphabet (like the DeafBlind Alphabet) with certain visual or tactile changes.
Interpreting - Use of services such as sign language interpreters or communication aides.
Communication devices - Such as Tellatouch or the computerised version; the Telebraille

In addition to these multisensory methods have been found to help those suffering from deafblindness to communicate better.

Causes of Deafblindness

There's over 70 known causes of deafblindness and these are usually split up into two main groups; acquired and congenital:

Acquired - Most people suffering from deafblindness have had use of both their sight and hearing throughout the majority of their lives. The loss of these senses occurs through injury, illness or age. Around 4% of people of 60 in the UK have experienced both auditory and visual impairments. The majority of people with acquired deafblindness are able to retain a useful amount of their sight and/or hearing. Many people with deafblindness have a congenital sensory impairment, meaning they were born without either sight or sound. They then go on to acquire the loss of the other sense, such as being born with congenital deafness and acquiring blindness through glaucoma in later life.

Congenital - Those who are born deaf and blind are said to have congenital deafblindness. This can occur for several reasons; prenatal infections such as rubella, chromosonal or genetic syndromes (such as Down syndrome), excessive use of drugs and/or alcohol during pregnancy and trauma occuring during childbirth. Due to widespread vaccinations, rubella, which was once the major cause of congenital deafblindness is now exceedingly rare. Another major factor in congenital deafblindness is Usher syndrome. This is a genetic condition where the sufferer is born deaf and then gradually begins to lose their sight. This typically occurs in late childhood and is due to a condition known as Retinitis Pigmentosa. Early warning signs of Usher syndrome include a loss of peripheral vision and night blindness.

Types of Communication

People suffering from deafblindness use a variety of different communication methods. Which method they choose depends upon how much useful sight and hearing they retain. Other factors include the causes of their deafblindness and for how long the person has had sensory impairments. And in some cases a deafblind person can make use of a combination of techniques to communicate. Here are some of the most common types of communication used by deafblind people.

Deafblind manual alphabet

Also called finger spelling, this method represents the letters of an alphabet using only the hands. This type of signing makes use of touch by spelling out each word onto a deafblind person's hand. Each letter is signified by a particular sign or location on the hand. Although the Deafblind manual alphabet can take a while to learn it's much faster to use than other methods such as block. Due to it's speed and fluency, this method is one of the most commonly used worldwide. The manual alphabet can be used to denote complex words by spelling individual letters or quickly express simple information such as 'yes' and 'no' through use of quick signs.

Block

Block is another form of manual communication in which words are spelled out onto the palm of the deafblind person's hand. As opposed to other forms of manual signing, Block makes use of tracing in order to spell the words on the palm. Block can be used to spell out complex words by tracing each letter with your finger in block capitals on the deafblind person's palm. Letter's are placed on top of each other and there are slight pauses to signify the end of a word. It's important to keep letters large and clear as it's easy to mistake similar shaped letters. Although learning Block requires very little tuition, it isn't as fast and is less popular than other signing methods due to the limited speed at which information can be imparted.

British Sign Language (BSL)

BSL is the main sign language used in the UK and is usually the first language of deaf people in the country. This languages makes use of space and movement of the hands, face, body and head. BSL is a language in its own right, it has both its own grammar and word orders. Although mostly used in the deaf community some people who are deafblind are able to use this form of communication and is most commonly used with those suffering from Usher syndrome. Like any other language BSL has several regional dialects. This can mean that signs used in some parts of the country, such as Scotland, might not be understood in southern parts of England. Some signs are extremely local and may only occur in certain cities or towns. An alternative version of this method is Makaton, which uses some of the main BSL signs but without a grammatical structure. Due to this many people find it easier to learn.

Visual Frame Signing

Most people suffering from deafblindness will retain some useful sight and in these cases communication methods such as visual frame signing can be used successfully. Visual frame signing makes use of the remaining field of vision to communicate words by sight. An alternative version of this is close signing in which signs will be kept at a certain distance from the deafblind person.

Hands on signing

Based upon British Sign Language, in this method the deafblind person follows the signs made by placing his hands on top of those of the signer and feeling the signs as they are formed. As many people with deafblindness can retain some useful sight this type of signing can be helpful. This method is particularly useful in helping people with Usher syndrome to communicate as their sight reduces.

Clear Speech

Speaking clearly is amongst the most effective ways to communicate with someone who has acquired hearing loss. Research indicates that this method can be highly effective in communicating with a deafblind person as they often retain some useful sight. It's necessary to control several environmental factors to ensure the method works well. For example it's important to check with the deafblind person which position is best for you to be in. Similarly it's important to minimise background noise and avoid noisy places. It's also recommended to hold a conversation in an area with good lighting. This allows your face to be seen more clearly and people with poor sight can often see more in a well lit place. In this method it's crucial to adapt the conditions to suit the individual and make sure to speak slowly and clearly.

Tadoma

Tadoma, also known as tacticle lipreading, is a method of communication for deafblindpeople in which the deafblind person places their hands on the speakers lips, jawline or neck in order to feel vibrations. The middle three fingers usually fall along the speaker's cheeks whilst the little finger is used to pick up the vibrations in the speaker's throat. In this manner the deafblind person can feel both the movement of the lips as well as the vibrations in the vocal chords. It's also useful to feel the puffing of the cheeks and warm air which is produced by nasal sounds when saying letters like N and M. Tadoma is a relatively difficult method to learn and is not commonly used nowadays. However some deafblind people can successfully use Tadoma to retain speech skills which they had before becoming deaf.

Braille and Moon

The Braille method is a system which is commonly used by blind people to read and write. Each Braille character is made up using six dot positions which are arranged in a rectangle. Dots can be raised at any of the six positions and can be used to form up to 64 permutations. Moon is a similar writing system for the blind which uses embossed symbols which are derived mostly from the Roman alphabet. Moon is popular with those experiencing acquired sight loss as many already possess the knowledge of the shapes of letters. And many deafblind people find Moon easier to understand than Braille. Although neither method can be used in general conversation, they can help deafblind people access information in books and magazines.

Statistics about sight loss and eye disease

Worldwide

• Globally, the number of people of all ages living with sight loss is estimated to be 285 million, of whom 39 million are blind
• About 90% of the world's visually impaired live in developing countries
• Globally, 80% of all sight loss can be prevented or cured
• An estimated 19 million children worldwide have sight loss
• 1.4 million children worldwide are irreversibly blind for the rest of their lives

Every 5 seconds one person
in the world goes blind.

United Kingdom

• There are almost 2 million people in the UK who are living with sight loss that has a significant impact on their daily lives
• There are 40,000 blind and partially sighted children and young people in the UK
• One in every nine people aged over 60 are currently living with sight loss
• Well over two fifths of blind and partially sighted people feel ‘moderately’ or ‘completely’ cut off from people and things around them

Every day around 100 people
in the UK start to lose their sight.

Quick Statistics: Deafness.

Compiled by the National Institute on Deafness and Other Communication Disorders (NIDCD).

• Men are more likely to experience hearing loss than women.
• Of adults ages 65 and older in the United States, 12.3 percent of men and nearly 14 percent of women are affected by tinnitus. Tinnitus is identified more frequently in white individuals and the prevalence of tinnitus is almost twice as frequent in the South as in the Northeast.
• Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
• There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing loss.
• About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.
• The NIDCD estimates that approximately 15 percent (26 million) of Americans between the ages of 20 and 69 have high frequency hearing loss due to exposure to loud sounds or noise at work or in leisure activities.
• Only 1 out of 5 people who could benefit from a hearing aid actually wears one.
• Three out of 4 children experience ear infection (otitis media) by the time they are 3 years old.
• Roughly 25 million Americans have experienced tinnitus.
• Approximately 188,000 people worldwide have received cochlear implants. In the United States, roughly 41,500 adults and 25,500 children have received them.
• Approximately 4,000 new cases of sudden deafness occur each year in the United States. Hearing loss affects only 1 ear in 9 out of 10 people who experience sudden deafness. Only 10 to 15 percent of patients with sudden deafness know what caused their loss.
• Approximately 615,000 individuals have been diagnosed with Ménière's disease in the United States. Another 45,500 are newly diagnosed each year.
• Approximately 3 to 6 percent of all deaf children and perhaps another 3 to 6 percent of hard-of-hearing children have Usher syndrome. In developed countries such as the United States, about 4 babies in every 100,000 births have Usher syndrome.
• One out of every 100,000 individuals per year develops an acoustic neurinoma (vestibular schwannoma).
  
  
  
  
  

  Sudden Sensorineural Hearing Loss with no known cause

  Most of the time the cause is unknown - it is only possible to establish a firm cause of Sudden Sensorineural Hearing Loss in about 15% of cases. The remaining 85% are referred to as idiopathic (with no known cause). In the majority of these idiopathic cases, the hearing is affected in only one ear (unilateral) and will improve spontaneously. It can be tempting, therefore, to adopt a 'wait-and-see' policy, but you should be seen by a specialist as soon as possible if you experience Sudden Sensorineural Hearing Loss, because it is important to establish a diagnosis since treatment may be needed if a specific cause is found.
  In an attempt to find a reason for these idiopathic cases of hearing loss, two main theories have been advanced. The first theory is that it may be of viral origin, as some viruses are known to damage the hearing, and a viral infection seems to precede the hearing loss in some cases. The second theory is that it may be due to some vascular defect (relating to blood vessels). There is no conclusive proof to support either view.

  Infections

  Meningitis is one of the commonest causes of severe or profound acquired deafness in infants and children. Hearing loss due to meningitis usually affects both ears (bilateral). Anybody who has suffered from meningitis, especially a child, should have their hearing tested as soon as possible after recovery.
  Measles and mumps are also associated with Sudden Sensorineural Hearing Loss. In measles, the loss is usually moderate to profound and bilateral, whereas in mumps it usually affects only one ear. The herpes zoster virus may on rather rare occasions produce a Sudden Sensorineural Hearing Loss accompanied by weakness of the facial muscles and vertigo. This so-called Ramsay Hunt syndrome may affect adults who have been close to children with chicken pox, which is caused by the same virus.
  Some infections are confined to the ear itself. Labyrinthitis is an inflammation of the inner ear, caused by bacterial or viral infection, which can make you feel dizzy, give you tinnitus (ringing in the ears), and can lead to sensorineural hearing loss, but usually only in one ear. Bacterial labyrinthitis often results in permanent hearing loss.

  Head injuries

  Head injuries, especially those associated with a fractured skull, may produce profound and often permanent hearing loss. Even where there is no fracture, sensorineural hearing loss may occur, caused by damage to the central nervous system or the inner ear itself.

  Noise

  Noise-induced hearing loss is usually gradual in onset and can be prevented by wearing appropriate ear protection. However, sudden hearing loss may occur from exposure to excessively loud noises, for example from blast injuries (from a nearby explosion) or from firearms and fireworks, especially in enclosed spaces. This sudden hearing loss can range from total deafness in one or both ears to a relatively minor high-frequency loss. In these latter cases, the hearing may recover spontaneously in time.

  Ear surgery

  Sensorineural hearing loss may occur after any surgical procedure on the ear, and the degree of risk depends on many factors. These include the nature of the procedure, the underlying disease and the skill of the surgeon. The hearing loss may occur immediately, in the few days following the operation, or even many years later. It is important to balance the potential benefits of surgery against the risks to hearing, and these issues should be discussed with your specialist.