Teaching Children Who are Deafblind

Contact Communication and Learning

Stuart Aitken, Marianna Buultjens, Catherine Clark, Jane T. Eyre, Laura Pease, Stuart Aitken, Marianna Buultjens, Catherine Clark, Jane T. Eyre, Laura Pease

• Publisher: David Fulton Publishers
• Year: 2013
• eBook ISBN: 9781136607028
• Edition: 1
• Topic: Education
• Subtopic: Education General

First published in 2000. Resources and training material about children who are deafblind are all too rare. The principles of contact, communication and learning are fundamental; they apply to us all. The process of putting these same principles into practice with children who are deafblind can be complex, incremental and challenging. This book rewards the reader by identifying what contact, communication and learning can mean for a deafblind child. At the same time it sets out detailed guidance on practice. Throughout, information is given with a rare insight and compassion for children with these very special needs.

CHAPTER 1

Understanding deafblindness

Stuart Aitken

Who is deafblind?

Born with severe hearing and visual impairments, Leah is now four years old and school placement is being considered. She is described as being withdrawn into herself, avoiding communicating with others whom she does not know well. She is unwilling to explore her surroundings and is reported to have severe behaviour difficulties.

Sean goes into a shop to buy groceries. He is totally deaf and blind. Although he can use his fingers to spell words on other people's hands, and understands when words are spelled on his hands, the shopkeeper does not know this system. He leaves the shop without provisions.

As President of a North American University for deaf students, Chuck is presenting the keynote speech at a major international conference. Via a speaking interpreter he presents his message: that there is no reason why a deafblind person cannot become President of the United States of America. Chuck was born deaf and became blind in adulthood.

Hugh is 13 years old and attends a school for deaf children at which the main means of communication is through sign. He has just been diagnosed as having a visual impairment which will deteriorate, although at this stage it is not known how fast or to what extent. His parents do not want him to know, his teachers feel he should know so that he can start to learn braille to prepare for the world of employment.

As a result of a car accident Dipalah has severe brain damage. She is now blind, has a severe hearing loss and uses a wheelchair. She is learning to use a computer and hopes to return to employment.

Susan was born deafblind. In addition to impaired sight and hearing, she has complex health needs. These include a heart defect, severe cerebral palsy and breathing difficulties.

Jeannie is 75 years old and over the past ten years has gradually lost much of her sight and hearing. She now finds it difficult to communicate with her relatives, friends and neighbours and can no longer read the newspapers. She has lost confidence and no longer feels able to shop or go out on her own.

What is deafblindness?

Each of these people is deafblind, having impaired vision and hearing. These senses are often known as our two major distance senses, because they provide us with most of the information that is beyond what we can reach out and touch.

People who have severely impaired vision often come to depend more on their hearing, for example listening intently for traffic while crossing the road. Similarly, people whose hearing is severely impaired often compensate by using their sight, for example using lip-reading or sign language to communicate with others. People who are deafblind cannot easily compensate. They may not be able to use their hearing or vision at all. (This is rare: most people who are deafblind have some level of either hearing, vision or both.)

Why use the term ‘deafblind’?

Over the years a number of different terms have been used to describe dual impairment to hearing and sight. In 1993, the term ‘deafblind’ came to be used in place of ‘deaf/blind’, or ‘deaf-blind’. The reason for using a single word is that some people felt that combining the words deaf and blind to create the one word, deafblind, suggested a unique impairment, in which deafblindness is more than just deafness plus blindness. Others argued that it is not normal in English to combine words in this way and, especially in the USA, the term ‘deaf-blind’ is still widely used. We will return to the debate over what term to use later in this chapter. We will though for the most part use the term ‘deafblind’ throughout.

The effects of deafblindness

If you are not deafblind, it is not possible to say exactly what it is like to have both sight and hearing impairments. The profiles at the beginning of the chapter begin to tell us what it is like to be deafblind. You may have noticed at least three themes that the profiles have in common. These themes show that people who are deafblind experience difficulties in:

• finding out information;
• communicating with others;
• moving around the environment.

Difficulties in finding out information

Take a minute or two to think about what is meant by ‘information’. You probably thought about newspapers, books, radio, television. Certainly these are sources of information. Each of these sources is often inaccessible to someone who is deafblind. However, information also includes the contents of a recipe book, a pub menu, a job application form, the electricity bill and a host of other trivia that most people take for granted.

Someone who is deafblind also faces a more subtle difficulty in finding out information. All of our everyday ordinary experiences – seeing the face of a familiar person, the angry expression of someone crossed, the shape of any object bigger than one's hand can hold, any object beyond one's reach – each of these depends on our use of information. Information is central to our lives.

The consequence of not being able to access information is that life experiences are reduced. Lack of everyday ordinary experiences – how to make a sandwich, knowing that water comes from a tap – makes it more difficult for the person who is deafblind to build up a store of world knowledge. Without that store of world knowledge what is there to communicate about?

Difficulties in communicating

This is perhaps the most obvious challenge to a person who is deafblind and for people who want to communicate with the person. Some people who are deafblind may use a form of sign language, for instance they might draw with their finger the shapes of the letters of a word on another person's hand. Another form of signing uses different positions on the person's fingers and palm to correspond to different letters of the alphabet. The communication partner then taps that position. Later you will be introduced to a range of ways of communicating with the person who is deafblind. Some of these are based on knowing and using language, others use simple gestures, facial expressions or movements of the body.

Each person who is deafblind has individual communication needs. The obvious difficulty for the person who is deafblind in trying to communicate is that very few people will know how to do this successfully. Faced with so many unsuccessful attempts at communicating with others it is perhaps not surprising that the person who is deafblind finds it difficult to learn to communicate.

Difficulties in moving around

We rely on our sight to move around, not just to avoid bumping into obstacles or to avoid falling down stairs. Our sight helps us to navigate, to pick out familiar buildings as landmarks. Someone who is blind will often be able to compensate for lack of sight by using navigational cues such as traffic noises in the street to know the road is nearby, that cars are coming from the right and that the bleeping sound means it is safe to cross at the pelican crossing. The distinctive sounds coming from refrigerators or televisions in the house help the person to know which room is off to the right, where the table is and how to get to the bathroom.

The person who is deafblind, not being able to compensate for vision with hearing, or for hearing with vision, is vulnerable, especially in unfamiliar surroundings. Often it is easier to shut oneself off from the world, to withdraw into a private world.

As we have seen, accessing information, communicating with others and moving around the environment are central to daily living and learning. All three of these depend on each other. People who are deafblind experience difficulties in their daily living and learning, affecting how they access, learn and remember information, communicate with other people and move around their environment.

Causes of deafblindness

Deafblindness is not caused by a single medical condition. People can be born deafblind, possibly as a result of infection, a genetic syndrome or birth defect. This is often referred to as congenital or early onset deafblindness. Acquired¹ deafblindness refers to occasions where a person becomes deafblind later in life, for example through infection, as a result of a genetic syndrome, a road traffic accident or due to the process of ageing. (For note 1 and other notes, see end of chapter.)

It may seem puzzling that a genetic syndrome can result in deafblindness at birth or later in life. This is because a gene might have an immediate effect on a developing foetus or its effects may not be apparent until later in life.

Congenital or early onset deafblindness

1. Infections as a cause of deafblindness

Deafblindness can arise as a result of infection – transmitted by parasite, bacteria or virus. Historically, one of the most common infectious causes was the rubella virus² commonly known as German measles. (For a comprehensive discussion of rubella see Sidle 1985.) The number of children who became deafblind as a result of the mother's infection during pregnancy peaked in the 1960s in the UK. As a result of immunisation programmes, the number of new cases of congenital rubella has declined. Note though that the decline may be reversed unless people continue to be immunised. To be effective in stopping the spread of rubella in the community both males and females need to be immunised.

Other infectious agents such as cytomegalovirus (CMV) or toxoplasmosis, can affect the developing foetus. Meningitis is an example of an infection which can cause impairments at any time in life, depending on the strain and severity of the infection. Some particular types of meningitis affect young babies more than other groups.

2. Genetic or chromosomal syndromes as a cause of deafblindness

Goldenhaar syndrome, or Oculo-Articulo-Vertebral syndrome (or OAV syndrome) is one example of a condition present at birth with a likely genetic cause. The syndrome may affect a range of functions, for example malformation of parts of the skeleton, as well as visual and hearing impairment.

3. Congenital birth trauma as a cause of deafblindness

Vision and hearing impairment can arise as a result of problems at birth or soon after. However, the cause of congenital birth defects is often unknown. These problems might be due to:

• prematurity;
• low birth weight (usually associated with prematurity);
• anoxia (lack of oxygen);
• other trauma or birth injury.

Children who are deafblind as a result of one of these causes often have additional, or multiple, impairments. They may have severe physical impairment, learning disabilities and communication difficulties. An example of this type of deafblindness is CHARGE association. Although there is speculation that CHARGE association has a genetic cause, at the time of writing this has not been confirmed.

Acquired deafblindness

1. Genetic syndromes as a cause of deafblindness

A number of genetically inherited syndromes can give rise to deafblindness, for example Usher syndrome. Usher syndrome is due to a gene defect which, although present from birth, its effects appear over the course of development. Hearing loss, usually present from birth or soon after, can range from moderate to profound. Visual impairment, the onset of which can often vary from late childhood to early adolescence or even adulthood, is progressive. It is not possible to predict how much sight will be lost. Usher syndrome is thought to affect three to six per cent of congenitally deaf people.

2. Accidents or other trauma as a cause of deafblindness

People can become deafblind as a result of an accident. Often a road traffic accident can result in injury to parts of the brain that deal with how we process information through sight and hearing and the injury can have many different effects that are difficult to understand.

Some kinds of trauma can result in deafblindness, for instance a stroke (a cerebral haemorrhage). Again parts of the brain that deal with sight and hearing may be affected.

3. Deafblindness associated with ageing

The most common cause of being deafblin...

Table of contents

• Cover
• Full Title
• Copyright
• Contents
• Acknowledgements
• Foreword
• Preface
• Contributors
• 1. Understanding deafblindness
• 2. Creating a communicating environment
• 3. Personal and social development
• 4. Holistic assessment
• 5. Curricular frameworks
• 6. Effective teaching and learning
• 7. Deafblindness and society
• Further reading
• Glossary
• Index