Communication methods and Usher
People with Usher use a wide array of different communication methods to suit their own needs.
- Sign Language
- Adapted equipment
- Lip reading
- Hearing aids
- Cochlear implant
- Deafblind Manual
- Block Alphabet written on hands
- Home and family signs
- Social Haptic communication
- Communicator guide/ Intervenor
British Sign Language (BSL) is a recognised language with its own structure and grammar.
Sign Supported English (SSE) Many people with Usher type 1 and some with Usher type 2 use Sign Supported English. Signs are used following the English grammatical structure and the mouthing of words used to support lipreading. Uses signs from BSL to support the key words in a spoken sentence
Visual frame signing is British Sign Language or Sign Supported English signed within a 'funnel' / 'tunnel' line of vision to match the person with Usher. This allows them to see the signs within their field of vision. It is usually a much smaller signing space compared to everyday British Sign Language.
Hands-on sign Language is used for a person with Usher who uses sign language, but who cannot see the production of sign language or hand shapes clearly. The person with Usher will put one or both of their hands over the hands of the other person who wants to 'talk' in British Sign Language, or Sign Supported English. This allows them to follow the hand shapes and direction of the signs so they can 'feel' the conversation.
2. Adapted equipment
There are a range of specially designed equipment and other adaptations that can be implemented to support communication, such as tactile markers, magnifying aids, and portable lamps. Technical aids can also assist communication such as electric magnification systems, personal computers, telephones, mobile phones, iPads, Skype and Facetime.
3. Lip reading
Lip reading (or lipreading) is when a person follows another person's lips as they speak and the movements of their lips, mouth and tongue enable them to 'read' what the person is saying. People with all Usher types may rely on lipreading, whether the person uses speech or sign language.
When the vision of a person with Usher becomes narrower, they will start to miss seeing the facial expressions, movements and body language of the other person as they will be unable to see the whole face and may have to sacrifice expressions in order to concentrate on the lips and mouth.
For example, a person with Usher, who can lip read a person in the daylight, may not be able to see their full facial expressions when they go into a darker place and may only see the person's mouth.
4. Hearing Aids
A hearing aid is a device which is made up of two parts; the aid itself which is worn behind the ear and the ear moulds inside the ear. Some hearing aids can be very small and used inside the ear, but this type of aid will only be recommended depending on the level of hearing loss. Many people with Usher use digital hearing aids or opt for a cochlear implant which may allow them to hear background noises, voices, vehicles, dogs barking etc. There are many different types of hearing aids which can be provided through the NHS or purchased privately.
5. Cochlear Implant
A Cochlear implant is a surgical device implanted to support a person to improve their hearing. Cochlear implants help the person to hear and be aware of environmental sounds, such as sirens, car horns, traffic light bleeps, and speech. Cochlear implants can improve the person's ability to lipread and may help a person to hear the phone. Do note however that the benefits of cochlear implants will be greater for some people more than others and that implantation will not necessarily lead to effectively interpreting speech.
Cochlear implants may be of some benefit to a person with Usher who has limited vision. For example, when crossing the road at traffic lights, they have the added benefit of hearing ambulance sirens so would not only follow the Green man signaling they were able to cross, but also be alerted by the sound of the approaching vehicle and therefore likely to stop and wait due to the added assistance of the implant.
6. Deafblind Manual
Deafblind Manual is a method of spelling words out onto the person with Usher's palm.
Any person with Usher can use this method if their sight has deteriorated or they may want to use it when it is dark e.g. in the cinema. It is simple for a sighted person to use and is a good method of two way communication for this reason. A person with Usher can carry the deafblind manual alphabet card with them to enable them to use this mode of communication with anyone. Copies of the card can also be ordered online from Sense.
An example of a scenario where this would be useful would be when seeking directions; however the person with Usher is unable to see the person's face or hear them due to the noisy background. A person with Usher can show the deafblind manual alphabet card to the sighted person who may 'fingerspell' on the Usher person's palm.
Block is another manual form of communication where words are spelled out on to the palm of the deafblind person's hand. It is even simpler to learn than the deafblind manual alphabet, but will be a slower method to use.
How to use Block:
- Trace each letter with your finger, in block capitals, on the palm. Use the whole of the palm for each letter
- Keep letters large and clear
- Place one letter on top of the last
- Pause slightly at the end of each word
8. Home and family signs
Some families create their own signs to support communication, using specific gestures to identify specific people and objects that suit their family and children who are deafblind or Usher. Some families use a lot of gestures to indicate what they are talking about.
Gesture is the movement or acting out using movement and hands but without using a proper sign language. It is common for people with Usher within hearing families to use gesture, for example to indicate dinner time or going on a car journey.
9. Social Haptic communication
Social Haptic communication (SHC) is a form of communication involving touch. It is used to inform a person about environmental information through touch. Social Haptic communication has a wide range of descriptive interactions including using emotions, art, drawing, describing the environment and orientation within an environment. We are including more lengthy information about SHC here as it is still a relatively new means of communication and it can be difficult to find.
Social Haptic communication is done through movements or strokes on the body, the person 'giving' the information will 'write' information on the deafblind person's back, side of their arm, shoulder or hand. This is to give people with Usher extra information so they are able to access the mood, the layout of a room, and additional clues about the environment.
Example: When a deafblind person enters a room, the layout of which they are unfamiliar with, (where tables and chairs are located, how many people are in the room, fire exits etc) this information can be 'drawn' on the deafblind person's back. Typical codes used would be a circle for a table, a half moon shape for chairs, lines for people etc. These shapes would need to be agreed by both parties beforehand.
Social Haptics is also used for giving extra emotional depth to situations/interpretations. For example if a deafblind person is unable to see facial expressions then they can be added by certain predetermined symbols or shapes and movements. For example a quick rub of the shoulder, or upper arm to indicate laughter, dots or short lines to indicate crying, sad or smiley faces drawn on the back.
Social Haptics can also be used as a shorthand version of communicating quick bits of information, for example a fire alarm could be a cross on the back, coffee? could be a 'C' handshape on the upper arm. It is also used as a reference tool, so using SHC to 'point' out objects or people would use hand over hand touch to allow the deafblind person to locate where things are in their surrounding space.
It is important that the person with Usher feels comfortable with touch and also has control and input as to the type of information they receive. Lots of deafblind people find SHC useful as an added source of information whilst using an Interpreter or Hands-on Interpreter. Some people find the 'dual' input nature of SHC off-putting, so it might take some trial and error to find out what suits the individual.
Although popular in its country of origin, Finland, and the surrounding Scandinavian countries as well as the Netherlands, it is not yet widely used elsewhere. One theory for this is that many deafblind people may already be using touch to receive and relay information without realising it and without labelling it as SHC.
Any person with Usher can learn how to use SHC, with family, friends, Interpreters or Communicator guides. They can create their own 'language' of symbols and signs. It can be used for affirmation and negation during conversations and even as a secret code for things like 'I'm tired and I want to go home!'
10. Communicator guides
A Communicator guide is a person who acts as a guide and a communication aid for a person with Usher. As well as helping to navigate their way in an environment by steering them around obstacles and other people, a Communicator guide will also provide additional information about the environment that the person with Usher may not have heard or seen.
This can be particularly useful in the workplace and Access to Work (ATW) funding can be applied for to cover the cost. When there is also a need outside of work for such assistance, an application can be made through an assessment under the Care and Support for Deafblind Children and Adults Policy Guidance (Department of Health, December 2014) to seek funding for a Communicator guide. The role of the Communicator guide requires a qualification in British Sign Language or the use of clear speech patterns.
Many people with Usher Syndrome will have a Communicator guide, however, some children with Usher may have an Intervenor as it may be decided that the child needs more direct learning input. An Intervenor acts as the eyes and ears of the deafblind person, providing individual support to enable effective communication and the reception of clear information. The Intervenor enables the deafblind person to take full advantage of learning and social experiences thereby allowing fuller access to the environment. The Intervenor also works towards an independent level of functioning with appropriate support.
Writing can be an important tool to give those with Usher the ability to express their thoughts, ideas and emotions. Large print can be requested when reading letters, books or leaflets and often a preferred font size rather than standard. Different types of pens are useful such as thick felt pens – black or dark blue on white or yellow paper. As someone with Usher you will have your own individual preferences so make sure those preferences are known to whoever you are corresponding with. You may want to specify:
- your preferred size of lettering (font size)
- a font that is easy to read - less stylised fonts such as Arial, Verdana and Helvetica may be best
- colour of letters and background to maximise contrast
- colour and type of paper - people with Usher often prefer a matt finish paper in a pale (non-white) colour to maximise contrast
Braille is a code comprised of raised dots on paper which is used for reading and writing by some people with Usher. Grade 1 is produced letter-by-letter and used for basic literacy while Grade 2 has the addition of abbreviations and contractions which can be printed and read.
The person with Usher may be recommended to take up learning braille with the help of a Rehabilitation Officer who is visually impaired. This prepares them for whatever eventuality they may face regarding their sight.
Moon allows people who are blind or partially sighted to read by touch. It is a code of raised shapes and takes its name from its blind English inventor, Dr William Moon. As the characters are fairly large and over half the letters bear a strong resemblance to the print equivalent, Moon has been found particularly suitable for those who lose their sight later in life, or for people who may have a less keen sense of touch. Sense is aware of a number of people still using Moon but unfortunately transcription and the equipment needed to create it is becoming increasingly difficult to find.
Making your communication preferences known
Someone with Usher will need to inform other people whether they understand information or a particular communication method. People with Usher cannot expect other people to understand their Usher and communication preference if they do not explain what works best for them. For example, if a person with Usher is unable to understand the person who is talking in front of a bright window, they should be assertive and explain that they cannot see a person's face and therefore is struggling to lip read them. People are unlikely to object to any such politely put requests.
Created: February 2016
Review due: 2016
First published: Wednesday 2 December 2015
Updated: Monday 16 January 2017