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

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.