Understanding Deafblindness

This page will outline deafblindness, its main causes and types. Navigate this page using the contents bar below.

- Understanding deafblindness
- Congenital deafblindness
- Acquired deafblindness
- Combined hearing and sight loss
- Age of Onset
- Fumbling and Stumbling Poem
- Braille and Moon

Deafblindness
The condition of deafblindness can be considered as a spectrum in which many factors such as the severity of the condition, the age of onset and other comorbidities will influence how an individual communicates, gathers information and orientates within the world.

It is very rare for a person to be totally deafblind with no residual sight or hearing at all. Rather, the combination of this dual-sensory loss leads to a third, unique condition in which the bodily-tactile modality and the sense of touch become centrally important.

It is estimated there are more than 30,000 Deafblind people in Scotland. This is expected to increase to over the years due to our ageing population.
Congenital deafblindness, or early-onset deafblindness, refers to infants who are born deafblind or develop the condition before language is acquired at around the age of two. This group will require skilled communication partners to negotiate the world and to co-create meaning using tactile communication systems.

Acquired deafblindness refers to people who have become deafblind after language has been developed and will require skilled support to adapt to tactile communication systems, maintain language, gather information and navigate around the world.

Congenital Deafblindness

Genetic Disorder – CHARGE Syndrome: A complex genetic condition that can lead to various abnormalities, including deafblindness.
Congenital Infections – Infections such as rubella (German measles), cytomegalovirus (CMV), and toxoplasmosis during pregnancy can lead to deafblindness in the human infant.
Premature Birth – Premature infants are at a higher risk for various sensory impairments, including deafblindness.

Events in very early childhood:

Meningitis: This infection can damage both the auditory and visual systems, leading to deafblindness.
Head Trauma: Severe head injuries can result in damage to the parts of the brain responsible for hearing and vision.
Medications: Some medications, such as certain antibiotics or cancer medications, especially when used in high doses or for prolonged periods, can cause damage to hearing and vision.

Acquired Deafblindness

Acquired Deafblindness – gradual or sudden loss of hearing and vision, often but not necessarily in old age (includes partially-sighted deafened, partially-sighted hard of hearing, and people who have Type 3 Ushers). They may communicate by using residual speech and hearing, deafblind manual, block or Moon.
Deaf visually impaired – those who were born deaf, or who became deaf in early childhood, experiencing gradual loss of vision, often but not necessarily in old age (includes BSL users, and covers Type 1 and 2 Ushers, deafblind BSL users, etc). Examples of the way they communicate are: Sign Language, Hands-on Signing, Visual Frame Signing and/or Lip-reading.
Blind hearing impaired – those who were born blind, or who became blind in early childhood, experiencing gradual loss of hearing, often but not necessarily in old age (includes blind partially deaf, blind deafened, blind hard of hearing).They may communicate by means of their residual hearing, speech, deafblind manual, or through Braille or Moon.
Genetic Disorders – Usher Syndrome: The most common genetic cause of acquired deafblindness, characterised by hearing loss and progressive vision loss due to retinitis pigmentosa. More information available here (link to Usher Syndrome anchor further down the page).

Health Conditions:

Diabetes: Long-term diabetes can lead to both diabetic retinopathy (affecting vision) and neuropathy (affecting hearing).
Neurological Disorders: Conditions like multiple sclerosis can affect sensory functions, potentially leading to combined hearing and vision loss.

Environmental Factors:

Exposure to Toxins: Prolonged exposure to certain chemicals or environmental toxins can result in sensory impairments.
Understanding the cause of deafblindness in an individual often requires a detailed medical history, genetic testing, and a thorough examination by specialists. Within the congenital field, there can be some risk of misdiagnoses due to diagnostic overshadowing and the functional nature of the assessment process.

Combined Hearing and Sight Loss

The combination of hearing and sight loss creates a unique set of wider needs that, without the right support, can leave deafblind people vulnerable, marginalised and isolated.

Combined sight and hearing loss affects an individual’s ability to access mainstream information and services, engage socially, conduct daily tasks and get out and about. If the appropriate care and support are not provided, the inability to perform these activities can lead to diminished independence and confidence which often leads to isolation, anxiety and depression.

Older people who are deafblind are more susceptible to depression than others their age. They can also face deteriorating health: Deafblindness can impede balance, making physical activity more difficult, and reduce people’s ability to prepare healthy meals.

Age of Onset

The age of onset of the condition, or when an individual becomes deafblind, will also have a significant impact on an individual’s development, communication skills and overall life experience. Age of onset will impact the individual's development, communication skills, education, and overall quality of life:

Developmental Impact:

Early Onset: Deafblindness that occurs congenitally or in early childhood before the acquisition of language, can significantly impact the development of communication skills, language, and social interaction. Early intervention is crucial to support developmental milestones.
Later Onset: Individuals who acquire deafblindness later in life may have already developed language and communication skills but will need support to adapt to the loss of sensory input and to learn new ways of interacting with the world.

Communication Skills:

Early Intervention: For children born with deafblindness, early and consistent intervention can help in developing alternative communication methods, such as tactile signing, Braille, and assistive technologies.
Adjustment and Adaptation: For those who acquire the condition later, retraining in communication methods, such as learning Deafblind Manual, can be essential.

Educational Needs:

Specialised Education: Early onset deafblindness often requires specialised educational programs tailored to the unique needs of the child, focusing on both sensory and educational development.
Transition Support: Individuals who become deafblind later may need support in transitioning from mainstream education to environments that can accommodate their new needs.

Psychosocial Impact:

Identity and Independence: Early onset deaf-blindness may result in different self-perceptions and levels of independence compared to those who experience it later. Psychological support, community inclusion and skilled communication partners are critical for mental well-being and sense making.
Coping Mechanisms: Later onset deaf-blindness can often involve significant adjustments, including dealing with the loss of previous abilities and learning new coping mechanisms. Although rare, specialist counselling sessions can be beneficial, as can the support of organizations such as Deafblind Scotland.

Rehabilitation and Support Services:

Customised Support: The type and extent of rehabilitation services required can vary greatly depending on the age of onset. Early onset may require long-term developmental support, while later onset might focus on rehabilitation and adjustment.
Assistive Technologies: The needs for and types of assistive technologies may differ. For example, children might need tools that support developmental learning, while adults may require devices that help them maintain independence.

Fumbling and Stumbling

Below you will find a video called 'Fumbling and Stumbling' a poem by Issy. She shares her experiences and practical strategies for overcoming everyday experiences with deafblindness. Learn how she navigates life's "stumbles" and turns them into valuable lessons for living more independently and confidently.

Transcription:

Hi, my name is a Issy McGrath and this is my story, titled The Fumble and Stumble.

Reaching out with my hand on my kitchen table and fumbling around searching for a fork is a voyage of Discovery for me.

And on the way I've already found the salt, the pepper and the tomato ketchup

And then suddenly someone put a knife into my hand, and I was really confused and said why have you put a knife into my hand

And she said “Oh I thought that's what you were looking for”

Let me make my own mistakes

Don't pre and share your mistake with me

Leave my thoughts to run my natural course and I will find my own happy ending

If you want, you could come with me and walk with me on a journey of mutualism

And on the way you could say to me there's a rose right there and I will turn to that Rose and touch it and experience its beauty through my fingertips

And I will smell it scent

And if I hit a thorn on the way that's my risk to own and you don't have to say sorry to me

I'm just feeling around, I'm working out my space, my environment

So let me fumble and stumble and I will build up a map of the space in my mind

And therefore, will be a much more autonomous and resilient deafblind person

So, I invite you into my space, my world and I will show you the way

Not through your ears or your eyes, but rather through my fingertips and my sense of touch.

Braille and Moon – Two Important Ways to Read by Touch

For many people who are blind, have sight loss or are deafblind, reading by touch is an important way to access information, learn new things and enjoy books. Two of the main tactile reading systems are Braille and Moon.

Braille uses patterns of raised dots and is widely recognised and used all over the world. Moon uses raised lines and curves and some people find it easier to learn.

Below is some background on each system, including how they were developed and how they work.

Braille

History
Louis Braille, born in France in 1809, lost his sight at a young age following an accident in his father’s workshop. Determined to find a better way for blind people to read and write, he developed Braille. Braille is a tactile reading system that uses patterns of raised dots. This invention transformed the lives of millions of blind and deafblind people by opening up access to education, employment and personal reading.

Although it was first created for the French language, Braille has since been adapted for almost every language around the world. Its introduction gave blind people greater independence and the ability to communicate through written words in a way that was previously impossible.

How It Works
Each Braille character, known as a cell, is made up of up to six dots arranged in two columns and three rows. The position of the dots within the cell creates a unique pattern for each letter, number or punctuation mark.

To read Braille, people use their fingertips to feel the raised dots, moving from left to right across the page. With practice, readers can become very fluent, reading at a speed close to that of sighted people reading print.

Who Uses It?
Braille is used by people who are blind, have sight loss or are deafblind. It is taught to both children and adults. It can be used for many purposes including reading books, labelling household items, accessing public signs and taking notes. Today, more than 30,000 people in the UK use braille to help them communicate.

Moon

History
Dr William Moon, born in 1818, lost his sight completely by the age of 21. He developed the Moon alphabet, a tactile reading system that uses raised shapes rather than dots. This made reading by touch more accessible for some people, especially those who found Braille difficult to learn or read.

How It Works
The Moon alphabet consists of larger and more open characters than Braille. The shapes are based on the standard printed alphabet, which means they can be easier to recognise for people who learned to read print before losing their sight. This system is also useful for people with reduced fingertip sensitivity or limited movement in their hands, as the larger shapes are easier to feel.

Who Uses Moon?
Moon is used by people who are blind, have sight loss or are deafblind. It can be a good choice for individuals who already know the printed alphabet and it is sometimes easier to learn than Braille, particularly for people who are deafblind. However, it is used far less often than Braille and is rarely found outside the UK. Around 1% of Deafblind people use Moon.

Families and friends can usually learn Moon quickly, making it a practical option for shared communication. However, books in Moon are large and heavy, which can make them difficult to handle and there are no portable mechanical devices for writing in Moon, which limits its everyday use.

Mans hand reading raised characters, moon