Learning Pathways for the Deafblind: Communication, Independence, and Support

Deafblindness, a combination of both hearing and vision loss, presents unique challenges to learning and communication. However, deafblind individuals utilize a variety of adaptive strategies and technologies to navigate the world, communicate effectively, and achieve independence. This article explores the diverse methods deafblind people use to learn and interact with their environment, highlighting the importance of early intervention, individualized approaches, and technological advancements.

Understanding Deafblindness

Deafblindness is not simply the sum of being deaf and blind. Most deafblind individuals have some degree of usable vision and/or hearing. The spectrum of combined vision and hearing loss varies considerably. Some individuals may be born with both impairments, while others acquire them later in life. For example, a person may be born deaf or hard of hearing and lose their vision later, or vice versa.

There are two federal definitions of deafblindness, one used in education and the other in rehabilitation. A 1980 study commissioned by the Department of Education estimated that between 42,000 and 700,000 individuals in the United States have some level of combined vision and hearing loss. The National Association of Regulatory Utility Commissioners (NARUC) estimates that 70,000-100,000 people living in the United States are deafblind.

Causes of Deafblindness

About 50 percent of people in the deafblind community have Usher Syndrome, a genetic condition where a person is born deaf or hard of hearing, or with normal hearing, and loses their vision later in life from retinitis pigmentosa (RP). There are three types of Usher Syndrome:

Usher Syndrome Type 1: Born deaf, vision loss typically begins in the teen years.
Usher Syndrome Type 2: Born hard of hearing, vision loss begins later in life.
Usher Syndrome Type 3: Usually born with normal vision and hearing, or mild hearing loss, both senses decline later in life.

Other causes include birth trauma, optic nerve atrophy, cataracts, glaucoma, macular degeneration, diabetic retinopathy, CHARGE Syndrome, and cortical visual impairment.

Read also: Universities for Deaf Students

Communication Methods

Deafblind people employ a variety of communication methods, tailored to their individual needs and sensory abilities. These methods can be broadly categorized as follows:

Sign Language Adaptations

American Sign Language (ASL) and English-based Sign Language: Some deaf or hard of hearing people with low vision use ASL or an English-based sign language. Adaptations may include signing more slowly or within a smaller signing space. For example, those with restricted peripheral vision may prefer signing at chest level.
Tactile Sign Language: The deaf-blind person puts his or her hands over the signer’s hands to feel the shape, movement and location of the signs. Some signs and facial expressions may need to be modified. People can use one-handed or two-handed tactile sign language.
Tracking: Some deaf-blind people with restricted but still usable vision may follow signs by holding the signer’s forearm or wrist and using their eyes to follow the signs visually.
Hands on signing: Hands on signing is a tactile derivative of BSL where you gently place your hands on top of your communication partner’s hands to feel the movements of the signs. This may sound complicated but the more you practice, the less you will have to think about it.

Tactile Communication

Tactile Fingerspelling: Usually blind or visually impaired people who lose their hearing later, or deaf or hard of hearing people who have depended on their speech reading and do not know how to sign, prefer tactile fingerspelling because sometimes sign language can be difficult to learn.
Print on Palm: The person communicating with the deaf-blind person prints large block letters on the other person’s palm. Each letter is written in the same location on the person’s palm. This is frequently a way for deaf-blind people to communicate with the public.
Deafblind manual: Deafblind manual is a tactile communications method where individual letters are signed onto your hand so that you can spell words. This is often used by people who have little or no sight or hearing.
Tadoma: Tadoma is a way of receiving communication by placing your hands on someone’s throat, lips or cheeks. Practised users will be able to identify words by feeling lip movements and vibrations.
Modified signing systems: These signing systems borrow some of the hand signs from Auslan (or the native sign language of the country or region you are in) or may use some signs unique to that system. They are simplified as they do not follow the grammatical rules of Auslan (or if in another country, the recognised sign language of that country). The main words of a message are signed as the sentence or message is spoken. The person who is deafblind may use the signs to help them understand the speech. Some may also use signs or signs and speech to communicate back. Some examples of modified signing systems are Key Word Sign, Makaton and Signed English. Natural gesture, such as waving hello and goodbye, pointing, waving arms to show excitement, using a “stop sign” hand to say “wait” or “no”, may even be included in this group. Use of natural gesture may be used as a bridge to learning more signing. Again modifications for reduced vision, as in Auslan may be required.
Tactile Forms of Signing: Tactile methods of signing involve signing while in physical contact with or touching the person who is deafblind. This is done so they can feel the sign. Where in space or where on the body the sign is made, the shape of the hand and fingers and the movement of the sign can be unique to each person. It adds information to what they see or is an alternative to seeing the sign. There are several ways signs can be made tactile. These methods, when used with someone who is congenitally deafblind may be different to and simpler than tactile methods used with someone with acquired deafblindness. With the latter group, tactile signing methods are usually referred to using just the term “Tactile” e.g. John uses Tactile. These systems are generally developed for the individual rather than using the same sign for everyone. This is because individuals recognise, tolerate and understand touch differently and have different communication needs. Making a record of tactile signs used with an individual, by writing descriptions and taking photos and video is a great start to ensure everyone is communicating the same messages in the same way.

Types of signs combined with touch for people who are congenitally deafblind include:

* Body signs - signs are made onto the body of the person who is deafblind* Hand under Hand - the person who is congenitally deafblind places their hands over the hands of the person signing to them, feels the shape of the hand and the movement of the sign, they are free to pull their hands away when they wish* Co-active signing - the hands of the person who is congenitally deafblind are manipulated into the hand shape or movement of the sign* Touch Cues - while not recognised as a signing system as such, is a frequently used method of touching the body or around the body so that the person who is congenitally deafblind will feel direct touch, vibration or movement of air on their body. Each type of touch cue has a different meaning and are generally used to let the person who is congenitally deafblind know what is about to happen or to give instructions. For example: * “I’m going to move your wheelchair now” might be communicated through three quick taps on the armrest of the wheelchair * “Stop” might be communicated by resting and open hand on the shoulder * “Time for a nappy change” might be communicated through using a two finger, double tap with both hands onto the area where the nappy tabs open and close the nappy

Speech and Auditory Aids

Speech Reading: This is a way for deaf-blind people with little or no usable vision to speechread another person by touch. They put their thumb on the other person’s chin, and their fingers on the other person’s cheek to feel the vibrations of the person’s voice and the movement of their lips.
Residual Hearing: Other deaf or hard of hearing people with usable vision use speechreading as well as their residual vision and hearing. They may use hearing aids, cochlear implants and/or assistive listening devices to help them hear and understand other people better.
CapTel: Some people with hearing and vision loss use CapTel to make telephone calls. Using a special phone, the CapTel USB, people can dial into a captioning service that types the other caller’s conversation onto a computer screen. Then, deaf-blind callers can read a conversation script on their screens in addition to listening to another caller on their telephones.

Assistive Technology

Screen Braille Communicator (SBC): This is a small, portable device that enables them to communicate with sighted people. The device has a QWERTY keyboard with an LCD display on one side, and an eight-cell braille display on the other side. The sighted person types short text on the QWERTY keyboard. The deaf-blind person reads the printed text by placing his or her fingers on the braille display. He or she then uses the braille display to type back text. The sighted person can read the text on the LCD display.
Braille TTY: The TTY is connected with and stacked on top of a braille display, although both can be separate. It allows a deaf-blind person who reads braille to use the telephone. The deaf-blind person can also use this system as a face-to-face communication device to communicate with someone else who does not know the person’s preferred communication method. Also, some people who don’t see well can use TTYs with large visual displays or computers with larger font to communicate with others.
Braille Notetakers: Deaf-blind people can also use braille notetakers to communicate with others who don’t know braille or their communication system. Many braille notetakers can be connected with personal digital assistants (PDAs) that are commonly used by others.
Braille: Braille is a tactile writing system originally developed with embossed paper, but now accessible through refreshable braille displays. For reading, Deafblind uses Braille to read. Similarly to what I mentioned the above, start off with the alphabet then move onto simple words and eventually to more complex words and ideas. For writing, the Deafblind person uses the braille display to type.

Other communication methods

Object symbols, tangible symbols, object cues, objects of reference: These are all terms for using an object or part of an object to represent a particular activity, event or person. For example a person who is deafblind may use a cup to show that they want a drink. Other people may use this cup symbol to ask the person if they want a drink. Someone may wear a pendant of a particular colour and texture. This unique pendant makes them easily identifiable to the person who is deafblind. The pendant is an object symbol. Pictures & Photos can be used to represent words or simple messages. Using several photos or pictures together, creates specific messages and sentences. Careful consideration of the person’s vision and the layout, detail, colour contrasts and size and the person’s vision is required.
Moon: Moon is another tactile writing system which is rarely used these days.
Naturally Occurring Communicative Behaviours: These include body language, facial expressions and vocalisations (making sounds with your voice, like crying, laughing, babble sounds, moans and squeals). We all use these, probably much more than we realise. So too do the people who are congenitally deafblind. Some will use them to give you a specific message. They want to let you know what they’re thinking. Others will use them without specific intent to tell you something. The behaviours are communicative because others can interpret them as meaning something specific. (He’s pulling his ear and whimpering again, he must have a sore ear). When a person’s actions, body language, facial expression and vocalisations combine in a specific way, often in a way that is not particularly common in the hearing and seeing world, they are often termed “a behaviour”. Understanding why these behaviours occur, what they mean and how to respond is important to positive and rewarding interaction for all.

Considerations for Effective Communication

Individualization: The most effective communication methods are those that are tailored to the individual's specific sensory abilities, preferences, and learning style.
Context: Communication methods may vary depending on the situation and the communication partner.
Patience: It takes time to get a concept across tactually. Even though the child signs fast, receiving information is slower. If he or she experiences any type of cognitive challenge on top of the dual sensory loss, processing time can take 4-5 times as long.
Respectful Approach: Whatever the means of communication a person who is congenitally deafblind uses, thought needs to be given for approaching and initiating the interaction or communicating with them, as they may not hear or see enough to notice that you are there. Your seemingly sudden appearance or actions can startle or overwhelm them. Here are some tips to consider for most people, but individual differences will occur.
- Approach from the front where you are most likely to be noticed, to be seen and/or heard to some degree.
- Say their name. If they can hear this, this will help them know you are there for them and you want their attention.
- Introduce yourself using your name. If you have one, offer your personal object symbol or sign that can be seen or felt, under the hand or on the arm or shoulder of the person who is congenitally deafblind. They can use these things to help recognise you.
- They may need time to take it in, time to understand and time to react.
- They may need repetition.
- When your approach has been acknowledged and accepted, continue your interaction.
- Talk to the people who know the person who is congenitally deafblind best to get information about their communication methods.

Fostering Independence

Deaf-blind people can get training to learn to become independent. One example is training in orientation and mobility so they can learn to travel independently. Also, deaf-blind people can take training classes at places such as a local or state rehabilitation agency, or an organization such as Helen Keller National Center (HKNC), a national rehabilitation center for deaf-blind youth and adults.

Strategies for Promoting Independence

Orientation and Mobility (O&M) Training: This training teaches deafblind individuals how to navigate their environment safely and efficiently, using tools such as mobility canes and strategies for using public transportation.
Technology: Deaf-blind people use many types of technology and equipment in their daily lives. Examples include mobility canes, closed circuit televisions (CCTV), Braille, Braille TTYs, TTYs with large print displays, and Braille or large print watches or clocks, to name only a few.
Experiential Learning: The best method for a Deafblind child to learn is through the use of tactile. For instance, if you are teaching the child about an object or toy, use your hand-under-his-hand, guide him or her to the object and put your hand on the object, letting the child follow your movement, then gently move your hand away and let the child take time to explore the object. It takes time to get a concept across tactually. Start of with small objects and toys then expand to larger tangible items such as table, chair, forks, etc. Allow time to explore each step and the larger concept. Follow the similar method of showing the child how it is done through touching. This will probably have to take repeated tries because the child’s learning ability is probably much slower than other abled child.
Chronological Order: When explaining to your child, tell the steps in chronological order. For example, “Instead of saying, “Clean up the toys after you play.” Say, “First play. Second, clean up.” or “Play finish?
Connecting the Dots: Beware of the “Magic Wand” when things appear and disappear from the child’s space. Connect the dots as often as possible, from storage to use to clean up and back to storage with the child involved.
Personal Recognition: One way that the child will be able to recognize who he or she is interacting with is through touching the face. The hands is placed on the face and the child will use his or her hand to touch the eyes, nose, mouth, or any facial features.
Attention-Getting: When wanting to get the Deafblind child’s attention, it is important to find ways not fright your child. One way to avoid this is to tap the child on the shoulder every time you want to get his or her attention.
Routines: When communication is limited between a person who is congenitally deafblind and another person, doing familiar things in the same way helps develop understanding and acceptance. The person who is congenitally deafblind becomes familiar with what is happening to them and knows what the outcome of the routine will be, they can feel safe about what is happening to them and around them.

Early Intervention and Support

The earlier the Deafblindess is diagnosed the better. As a baby, that is when the baby’s brain is growing and developing thus is absorbing a lot of information. However, with only three of the five senses, it can be a lot more difficult for the child to develop the cognitive skills including social interactions, name and type of objects, etc. because the Deafblind child cannot see or hear also known as ‘dual sensory’ loss. The best method for a Deafblind child to learn is through the use of tactile.

For many parents, it is hard enough to hear from the doctor’s that their child is deaf or to find out your child becomes deaf later in his or her life. Imagine if the doctor tells you the news that your child is Deafblind or your child looses his or her hearing later in life. As a parent, you start to freak out and unsure of what to do. You don’t know where to go to and how to provide the accommodations for your child so your child can be successful in life. There are a lot of services out there that supports the Deaf community including Deafblind.

Read also: Tone-Deafness and Singing

Total Communication

Rarely would a person who is congenitally deafblind learn or be exposed to only one method of communication.

Total Communication refers to communication through any of the means described in this web page. Within in the Deaf community and in Deaf education,Total Communication refers to communication through signing, listening and speaking, lip reading and written methods. Out of this context, Total Communication has a broader definition.

The Importance of Sign Language

Learning signs has been crucial. Knowing some sign language helps Luca to get more out of the thing he loves most in the world - music. His bone-anchored hearing aid helps him pick up the sounds while we all sign the lyrics together. One of Luca’s favourites is Twinkle, Twinkle, Little Star, which he signs in Makaton.

Professionals

Anne, who works for Sense, has been working closely with Luca and his family since the day he was born. I first met Faye and Ben, Luca’s mum and dad, in hospital on the day Luca was born - I happened to be there visiting another child. He had just been diagnosed with CHARGE syndrome, a rare genetic condition that affects his ability to see, hear and balance. It’s daunting for any parent to learn that they have a child who is disabled. I’m just so grateful that, at that moment, I was there to give them support and reassurance. For most children, communication evolves naturally as they watch and listen to the people around them and associate what they see and hear with ideas, actions and objects.

Read also: Financial Aid for Hearing Impaired

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