CUEmmunication: Beginning Communication with People Who are Deafblind

WHERE TO BEGIN

Due to the severe shortage of training courses specific to deafblindness, many people working in the field are untrained. Support providers may begin their work with people who are deafblind with feelings of inadequacy and apprehensiveness simply because they do not have even a basic knowledge of how to make contact or communicate with an individual who is deafblind.

Perhaps the question most frequently asked is, "Where do you begin?"

Although the following practical guidelines have been written primarily for use with people who are congenitally, or prelingually, deafblind, steps 1 4 in particular can certainly be used with many other individuals who are deafblind.

APPROACH

The initial contact you make with a person who is congenitally deafblind is critically important - it may even open the gateway to communication and language development.

Consider the following: A person with hearing and vision is given many incidental cues about another person approaching him, before the other person ever says a word or comes within his personal space. A person with hearing and vision may see another person approaching from quite a distance and may be able to tell by their height or demeanour whether it is a child or an adult. He may be able to tell whether it is a male or a female. He will see the colour and style of the hair and the clothing. As the person comes closer, he may hear the person speaking to someone else in the background and recognise the voice. He can see the facial expressions and body language which may indicate how that person is feeling or perhaps even guess what kind of a mood that person is in. He will certainly know whether the person is familiar to him or a complete stranger. All of this information, and more, is available to the person with hearing and vision, before the advancing person makes any effort whatsoever to communicate their impending arrival.

The person who is deafblind will not have the advantage of this distance information that people who have hearing and sight take for granted.

How can we provide meaningful information to the person who is deafblind?

ASSESSMENT

A person diagnosed as congenitally, or pre-lingually, deafblind may be difficult to assess as to just how much vision and/or hearing the individual has. Accurate assessment of functional vision and hearing can be even more difficult if the person has additional disabilities.

Until such time that reliable assessments can be made, the person must be given the 'benefit of the doubt'. In other words, we must never assume that a person who is deafblind knows we are approaching, or knows who we are once contact is made.

*The person must be approached appropriately. This means offering useful, meaningful information in the most non-threatening way possible. * (bold)

PRACTICAL STEPS TO COMMUNICATION - or 'CUE'mmunication!

This simple, but structured, technique of approach can be used with very young children, as well as adults.

*Note:

Before making any contact with the person who is deafblind, it is important to consult with parents and service providers to gain information in regard to types of communication that have been used, any sign names that may have already been introduced and preferred activities. *

*Remember, ALL people who are deafblind are individuals, and some of the following steps may need to be adapted to suit individual needs and preferences.

To be effective, the following guidelines are recommended to be used consistently, by all people who are involved with the person who is deafblind, and in all settings.

1. Before making any physical contact with the person, approach from the front, if at all possible, and move to the side as you come closer. This gives the person the opportunity to use whatever residual vision he may have, whether it be central or peripheral vision.

2. Talk naturally as you approach, saying the person's name, andsaying who you are, eg. "Hi Joe. It's Sharon here". This gives the person the opportunity to use whatever residual hearing he may have. Come to within about 20 centimetres of his ear, and continue to "chat" naturally, using his name and yours. Speak clearly and use good voice inflection and intonation.

Never shout. Shouting only distorts sound and may cause discomfort.

At this close proximity, even if the person is profoundly deaf and/or unable to comprehend speech, he may gain important information from intonation, pitch and/or breath stream. He may also be able to smell shampoo, perfume, after-shave or garlic from last night's dinner! If perfume or after-shave is worn, try to always wear the same kind, as this may give the person a valuable cue as to who you are.

Do not wear strong perfume or after-shave. This can be very offensive to some people, as can the smell of cigarette smoke on hands or breath. Good hygiene is very important, as you will be in close contact with a person who is deafblind.

3. Now you can introduce yourself.Gently place the back of your hand against the back of his hand (as you would if offering someone sighted guide). Leave your hand there until he initiates further contact, such as moving his fingers or feeling your hands for rings or a bracelet.

Be patient. Wait for the person to make the next move.

If there is a piece of jewellery that is always worn, or a distinguishing characteristic such as a beard, guide his hand to it each time. If this is done consistently, he will eventually seek the cue himself.

Never grab or force things into the palms of the hands, as these are the 'eyes' of a person who is deafblind.

1. Say "Hello".If he offers a palm you may make a circular movement onto his palm to say "hello". This gesture can also be made onto the back of his hand, if he does not offer the palm. Some people are labelled 'tactilely defensive' if, at contact, they pull their hands away, retract their hands into fists, or refuse to touch something. 'Tactilely selective' may be a more accurate term. Perhaps many episodes of having things forced into his hands with no warning or introduction has resulted in his choosing to be selective about what, or who, he will touch.

2. Initially use only one letter or sign as a sign name for theperson. Combined letters or signs may only confuse at this early stage. A possible sign name would be to fingerspell the first letter of his name, eg., "hello J." and direct his hand to point to himself, and say "You are J(oe)." Then guide his hand to point to you and to touch your personal distinguishing cue as you say your name, "I'm Sharon."

Then guide his hand back to point to himself and to fingerspell 'J' into his hand. Repeat the procedure. [At a later stage you can introduce your sign name in the same way, eg., guide his hand to point to you and to feel you making your sign name; then guide his hand back to point to him and make his sign name; then guide his hand back to point to you and to make your sign name.]

Always give the person enough time to initiate a response. Sometimes we are too eager to 'help' and we shape or prompt the person's hands into a response before they have had enough time to process their next move. Not only is this frustrating for the person, but it also develops learned helplessness.

1. You can now proceed with an activity.

2. (Consultation with people close to Joe would have already taken place to establish what kinds of activities he likes.) Take Joe's lead. Respond to any communication attempts. If he indicates preference for a particular activity, respond accordingly. At this stage he may wait for you to initiate an activity.
1. Give him meaningful information about the forthcoming activity.

Never assume that he understands what you expect him to do, or what you plan to do with him. Consistent use of a meaningful object, or cue, presented before the activity can help the person to develop an association with and to anticipate that activity. Make sure that the object, or cue, you choose is meaningful to him, and that everyone involved with him uses the same object, or cue, for that particular activity. Remember to choose objects for characteristics that will appeal to the individual person, being particularly attentive to the texture and/or smell of the object if there is little or no vision. If it is time for an activity, take a piece of the activity to him. He can then carry the object to the activity to indicate where he is going. If this is done consistently he will build up associations and will begin to anticipate the related activities when presented with the object.

* If it is time for morning tea, take the empty cup to him for himto carry to the table. This will give him a cue as to where he is going and what will happen when he arrives there.

Don't just drag him to the table and assume he knows where and why he is going.

*

If it is time to go in the car, take a set of keys to him. Hecan then carry the keys to the car. If this is done consistently, he will develop an association between the keys and going in the car.

*

The object goes with him and stays with him during the activity,perhaps in a pocket or on the table next to him. When the activity is finished, he can then place the object in a particular container. The container could be the object to indicate the concept of 'finished'.

*

Natural gestures and iconic signs can be paired with theobjects, eg. moving the arms to indicate swimming; hand to mouth to indicate eat; hand on head to indicate a hat for going outside, etc.

*

Always use your voice and tell him what is happening. Neverassume that he cannot hear you or will not understand what you are saying. Give every opportunity for language input.

*

Eventually, he will be able to make a choice, given two objects,as to which activity he would prefer.

*

A zippered waist bag, sometimes called a 'bum bag', is a greatplace to keep the objects handy. The bag can be worn to keep the hands free. When the person begins to make his own choices, he can be encouraged to wear the bag himself, to always have the objects available to him. However, discourage play with the particular objects in the bag, as they may lose their symbolic significance if handled frequently without meaning. If the person likes to have something to explore or play with, an alternative to the contents of the bag could be different objects or textures affixed to the outside of the bag.

*

If the person is in a chair, never move the chair in or outwithout first indicating what you intend to do, eg., tap the back of the chair or the handles (if it is a wheelchair). Always let the person know who is there.

Just imagine yourself being propelled through space to an unknown destination by an unknown person for an unknown reason!

8. Make a conscious effort to say "hello" and "goodbye". Theperson who is deafblind will not see you coming or going, nor will he hear you saying "hello" or "goodbye", so you must approach him to give him this information.

Give the person who is deafblind the same respect and courtesy you would expect from anyone who enters or leaves your own home.

9. If you must leave the person for a short period and will bereturning to him soon, indicate this by telling him and accompany it by a touch cue (perhaps a gentle squeeze on the shoulder). Whatever cue is used, make sure it is used consistently, and that it differs from what is used to indicate 'goodbye', when you leave for the day or for an extended period of time.

Always let him know who you are when you come back to him, even if you have only been away for a minute.

It only takes a few seconds to follow the steps outlined above to let the person know who it is. Never assume that he knows it is you and don't play games like 'guess who I am?'.

1. Give the individual a reason to trust you and a reason to wantto communicate with you.

2. Approach is really nothing more than good common sense.Use it consistently and it will become automatic. Although it is a structured method, it takes only seconds to apply, so the old excuse, "We just don't have the time to do it " just doesn't work here!

What is important in effective communication is not so much the variety of communication methods and number of signs you know, but how you use that knowledge, and respect the communication that is used and understood by the individual who is deafblind - 'the attitude of communication'.

Sharon Barrey Grassick -Perth, Western Australia, 1997

REFERENCES and RECOMMENDED READING:

Beukelman, D. and Mirenda, P. (1992). Augmentative and Alternative Communication. Baltimore, Paul H. Brooks Publishing Co.

Bloom, Y. (1990). Object-Symbols: A Communication Option : Sydney, North Rocks Press.

Bloomberg, K. and Johnson, H. (1991). Communication without Speech: A Guide for Parents and Teachers. The Australian Council for Educational Research.

Fraiberg, S. (1977). Insights from the Blind. London, Souvenir Press.

Freeman, P. (1975). Understanding the Deaf-Blind Child : London: Heinemann Medical Books.

Mamer, L. (1996). Toys and Manipulative Materials to Enhance Sensory Awareness in Individuals who are Deafblind. Paper presented at the Conference on Deafblindness LIVING AND LEARNING: A Lifelong Adventure; Vancouver BC.

McInnes, J. M. and Treffrey, J.A. (1982). Deaf-Blind Infants and Children: A Developmental Guide: The Open University Press, Toronto.

Nielsen, L. (1990). Are You Blind? Promotion of the development of children who are especially developmentally threatened. Sikon, Denmark.

van Dijk, J. (1991). Persons Handicapped by Rubella. Swets and Zeitlinger, Amsterdam.