What is deafblindness?
Most people take for granted the information that sight and hearing give us. You see someone smile so you smile back (or you might choose to ignore the person). Someone points at something and you might look to what's being pointed at. If a young child points at something you might tell the child what it's called. The sound of a passing car, your name mentioned in a group, favourite music played - all are heard and responded to in some way.
People who are deafblind miss out on the ordinary, everyday experiences got through sight and sound. People who are born deafblind miss out on these experiences all of their lives. For them, the world they experience ends at their fingertips. That world can appear to be a strange set of disconnected experiences, perhaps threatening, often frightening.
People who are visually impaired often depend more on their hearing. They will listen for traffic before crossing the road. People who are Deaf or hard of hearing will rely on their sight. They might lip read or use sign language to communicate with others. People who are deafblind have even greater difficulty overcoming the challenges of ordinary day-to-day living.
If given the right kind and level of support most people who are deafblind do manage to rise to these challenges. The key to providing that support is communication.
Are all people who are deafblind totally blind and totally deaf?
Most people who are deafblind can hear and see something. Unlike people who are Deaf they cannot compensate by using their sight. And unlike people who are visually impaired or blind they cannot compensate by using their hearing.
Many people described as deafblind can recognise familiar sounds, might understand some speech, and may be able to speak themselves - especially if they became deafblind later in life. Others have enough sight to see and move around in surroundings they are familiar with, recognise people they know, see people signing to them if up close, and perhaps read large print.
So the term 'deafblindness' covers a range of impairments to both senses. This is one of the reasons why every person's experience of deafblindness is unique.
Why use the term 'deafblind'?
Several different terms have been used to describe the combination of impairment to both hearing and sight. In 1993, the term 'deafblind' came to be used in place of 'deaf/blind, or 'deaf-blind' in the UK. Combining the words deaf and blind to create the one word, deafblind, implies a unique impairment: deafblindness. The implication is that the whole is greater than the sum of its parts: deafblindness is more than deafness plus blindness. Others have argued that, in English, it is unusual to combine words in this way and. Especially in the USA, the term 'deaf-blind' is still widely used.
The term 'DeafBlind' is also used in the USA. There, the lowercase 'deafblind' often refers to the medical impairments of a person with impaired hearing and sight. The capitalised word DeafBlind is regarded as referring to the person, his or her language and cultural identity. Read more about the term DeafBlind (http://www.deafblindinfo.org/faq.asp#Q8).
The practical implication of all these differences in terms used is that if you are using a search engine such as Google, you are likely to get different search results, depending on whether you search for the term 'deafblind', deaf-blind or deaf/blind. It's important to realise that these are not different impairments, just different ways of describing the same impairments. (For the most part, organisations are wise to this problem and their websites will search for both.)
What is it like to be deafblind?
If you are not someone who is deafblind, it is not possible to say exactly what it is like to have both sight and hearing impairments. It isn't straightforward for sighted and hearing people to draw conclusions about what it means to be deafblind. Wearing nightshades and ear defenders (to blank out sight and sound, known as simulating deafblindness) can make people more aware but it isn't the same thing as deafblindness.
Nonetheless, certain patterns do emerge that help to understand what it means to be deafblind. These patterns emerge both from what people who are deafblind tell us, and from how they might respond to familiar and new experiences. Difficulties are experienced in:
- finding out information;
- communicating with others;
- moving around the environment.
Accessing information, communicating with other people and moving around the environment are inextricably intertwined in everyday life. Deafblindness affects how people get access to, learn and remember information; communicate with other people; and move around their surroundings.
Difficulties in finding out information
The term 'information' would certainly include newspapers, books, radio and television. Very often someone who is deafblind cannot access such information. But the 'information' contained in a recipe book, pub menu, job application form, gas bill can be just as inaccessible.
People who are deafblind also face more subtle difficulties in finding out the information that is central to our lives. The face of a familiar person, the meaning behind facial expressions, the shape of objects out of reach, the sound of an approaching bus - all help to give meaning to ordinary daily life.
Not having access to all these sources of information means a reduced store of world knowledge. Making a sandwich becomes an enormous task if you don't know that bread comes out of a pack in slices (or maybe has to be cut), the cheese is in a plastic bag on a shelf behind a plastic or metal door that hums [refrigerator]. And the tasteless liquid for drinking bears no relation to the wet stuff gushing out of a cold hard spout [water tap]. Without a store of world knowledge there isn't much to communicate about.
Difficulties in communicating
Communication is perhaps the most obvious challenge. How do you communicate with someone who is deafblind and how can you support that person to communicate with you?
People who are deafblind might use one or more of many different ways of communicating. Some of these are based on knowing and using language (including sign language not just speech). Other ways of communicating include simple gestures, facial expressions and movements of the body.
Some people who are deafblind may use a form of sign language. One person might draw with their finger the shapes of the letters of a word on another person's hand. Another person might use different positions on the person's fingers and palm to mean different letters of the alphabet. Here are a few ways people who are deafblind might use to communicate:
- Basic interaction - being with the person
- Object of reference
- Picture or symbols
- Deafblind Manual Alphabet
- British Sign Language
- Braille or Moon
- Tadoma
The website www.deafblind.com provides useful information on these and other methods of communicating.
Outside of their immediate friends and family, deafblind people are unlikely to meet many people who can communicate with them straightaway. Faced with something we don't understand it is natural to back away. Equally, having been faced with so many unsuccessful attempts at communicating with other people and them with him or her, the person who is deafblind may give up trying.
Not only is each attempt to communicate made difficult, for both communication partners, but the effect of missing out on regular ordinary experiences of touching base with other people, makes it difficult to learn to communicate. Each failed communication attempt makes it more difficult to keep trying the next time.
Difficulties in moving around
We rely on our sight to move around, avoiding obstacles planning routes and negotiating stairs. Someone who is blind may be able to compensate for lack of sight, using cues such as traffic sounds to know that cars are approaching, and that the bleeping sound means it is safe to cross the road. Sounds coming from washing machines or televisions help the person to get their bearings, to find the table and get to the bathroom.
Not able to compensate for loss of vision or hearing, the person who is deafblind is often more vulnerable, even more so in unfamiliar surroundings. In such circumstances it can be easier to shut off from the outside world, and to withdraw into a private space.
Resources
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Simulating deafblindness
Blindfolds and earmuffs (the terms nightshades and ear defenders are more appropriate) are often used to help raise awareness of what it is like to be deafblind. While wearing them the person might be led around unfamiliar environments, eat a snack, be asked to identify objects just by touch and so on. Most simulation activities last for only a few minutes or perhaps as much as an hour. Occasionally, simulation activities might last for a whole day and include taking a bus, going swimming or hill-walking. With longer exposure, the simulation exercise is more like the 'real thing'. Nonetheless, there are limitations to any simulation exercise.
Exercises like these can only ever provide a partial understanding of what it is like to be deafblind. They highlight some of the barriers deafblind people face but they cannot give you an understanding of what it's like to be deafblind. They tend not to consider the changes that society could make to help overcome the challenges of deafblindness. Each person who is deafblind, his or her family and relatives, has individual needs. Effective support means addressing individual needs.
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Basic interaction - being with the person (www.bild.org.uk/05faqs.htm#Fact_sheets - Download the Factsheet on Intensive interaction)
Many people who are deafblind are still learning about interacting and communicating with people. The person might depend more on others to notice and respond to subtle variations in their posture, facial expression or movements. These might be important ways for them to express fun, disinterest, excitement. These are all opportunities to extend the person's interaction and communication.
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Objects of reference (atschool.eduweb.co.uk/meldreth/textandinfo/obj1.html)
Some people who are deafblind use objects to symbolise or refer to a particular activity. A bathing cap may indicate swimming, a fork to show it's lunch-time. Objects of reference can encourage people who are deafblind to choose activities, and other people can let them know what is about to happen.
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Pictures or symbols (www.widgit.com/symbols/about_symbols/intro_2_symbols/index.htm)
People who are deafblind with remaining sight may use pictures or symbols to help communication. Although clipart and photos can be useful, often off-the-shelf systems that have been designed to support communication are most useful. These include:
- Mayer Johnston Picture Communication Symbols, (www.mayer-johnson.com) often known as (PCS) or Boardmaker™ symbols
- Rebus symbols (www.widgit.com/products/wws2000/about_symbols/WWS2000Widgit-Rebus.htm)
- Makaton symbols (www.makaton.org/about/ss_others.htm)
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Deafblind manual alphabet (www.deafblind.com/card.html)
For deafblind people who are fairly good at spelling (usually those who have become deafblind after they acquired language) the manual alphabet can be a quick way to communicate. Using the index finger as a 'pen' you point to different finger positions on the deafblind person's hand, or draw letter shapes.
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Braille or Moon (www.tiresias.org/reports/tactile.htm)
These are ways of producing text so that it can be read by touch. Braille is a series of raised dots, made up from combinations of six dots to a 'cell' (though eight or nine dot Braille is sometimes used). Moon is much more like letters that have been raised up from the page and is often more useful to people who have become blind later in life and who will already have sighted experience of letters.
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Tadoma (www.deafblind.com/card.html [Near the bottom of the page])
Few deafblind people use Tadoma as it can be quite difficult to learn. It involves the deafblind person placing their hands on the speaker's lips or throat so that vibrations from speech can be felt. Tadoma got its name from the first two children to be taught the system, Winthrop "Tad" Chapman and Oma Simpson.
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British Sign Language (www.rnid.org.uk/information_resources/factsheets/communication/factsheets_leaflets/ntroducing_british_sign_language.htm)
BSL is a language in its own right, meaning that it has its own conventions on word order and grammar. Both hand signs as well as facial expressions are used as visual ways of communicating instead of spoken language. Although used mostly by people in the Deaf community, some deafblind people can use BSL. It is used by many people who have Usher syndrome.