Deafblind awareness week falls on the 23rd to the 29th June this year, and in the following article Jonathan Reid, Research and Education Lead for Deafblind UK, offers an insight into the condition and asks what more can be done to highlight the unique nature of deafblindness and to support the potential of those living with dual-sensory loss
Deafblindness is a complex, rich, and deeply individualised condition, and can require some detailed unpacking. It is best understood as a spectrum, in which multiple factors may influence how a person communicates, gathers information, and navigates within their environment. In this regard, we may consider two broad yet deeply related categories: congenital deafblindness, where the age of onset of the condition happens before birth or, crucially, before language becomes established in the infant, and acquired deafblindness in which the age of onset occurs following the establishment of language (either spoken or signed) and most typically in later life. Currently, there are around 450,000 people living with the condition in the UK, and this number is set to increase to over 610,000 by 2035 due to the ageing population.
Defining deafblindness: A complex challenge
In attempting to understand the complexity of this heterogenous spectrum, let us turn first to the UK definition of deafblindness, which states that a person may be regarded as deafblind “…if their combined sight and hearing impairment causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss”1. And, if we look to the Nordic definition, we will find yet more information on the complexity of the condition: “To varying degrees, deafblindness limits activities and restricts full participation in society. It affects social life, communication, access to information, orientation, and the ability to move around freely and safely. To help compensate for the combined vision and hearing impairment, the tactile sense becomes especially important…”2. Further still, the Dutch definition develops upon this to include conditions such as fatigue; “…problems with communication, and/or information acquisition and processing, and/or orientation and mobility, and/or social functioning, and/or energy homeostasis.”3 Even within these examples, therefore, we may see the complexity of defining the condition of deafblindness, and the unique challenges this poses.
In unpacking this further we will use the term deafblind throughout this paper. The portmanteau is intentional as there is a recognised need to construct the condition of deafblindness not merely as the summation of sight loss and hearing loss, but as a third, distinct and unique condition, in its own right.
The causes and impact of deafblindness
Broadly speaking, we may then consider four broad categories of deafblindness:
- People who are born deafblind (or become deafblind before language is established)
- People who are born deaf and lose their vision after language is established
- People who are born blind and lose their hearing after language is established
- People who are born with vision and hearing and lose both senses after language is established
For example, within the acquired field, Usher Syndrome is the leading cause of acquired deafblindness in the UK. It is a genetic condition present from birth. In the case of Usher Syndrome Type 1, a child may be born with moderate to severe hearing loss and the natural language of the child may well be British Sign Language (BSL). As this individual develops into later life, their vision may be impacted by Retinitis Pigmentosa leading to deafblindness and requiring significant adaption to their established communication system involving the development of tactile or ‘Hands-On’ BSL.
For a child born with deafblindness, typical developmental milestones in language acquisition, orientation and mobility, for example, will be complex, and skilled communication partnerships will be required to co-create meaning and make sense of the world.
In both the congenital and acquired deafblind fields then, we may see a range of differences, complexities and barriers to inclusion and agency. However, there are also unifying biopsychosocial requirements. For the congenitally deafblind child with complex communication needs, for the middle-aged man with Usher Syndrome, and for the older woman living with age-related deafblindness and dementia, a shared need for expert and tailored support in terms of communication, accessing information, and navigating the world is paramount.Deafblindness can result from a wide range of causes. These include genetic syndromes such as Usher Syndrome and CHARGE Syndrome; congenital infections such as rubella or Cytomegalovirus, complications from premature birth; postnatal illnesses such as meningitis; and head trauma or exposure to ototoxic medications.
In later life, diabetes, neurological disorders, and the natural ageing process can lead to progressive sight and hearing loss. Environmental exposure to toxins, or chronic health conditions, may also play a role.
Understanding the cause and age of onset is critical. Children born deafblind may require long-term, specialist education and early tactile communication development. Adults who acquire the condition may need rapid rehabilitation, psychological support, and retraining in communication and orientation techniques.
Age of onset and its implications
For individuals with early-onset deafblindness, particularly those who experience it before language development, there are often profound impacts on cognition, communication, and emotional development. Early intervention is essential — not just educationally, but to support the development of identity, agency, and social interaction.
For individuals with later-onset deafblindness, support needs may be less about development and more about adaptation, including learning new communication strategies (such as deafblind manual or tactile British Sign Language), utilising assistive technology, and managing the psychological impact of loss.
In both cases, the involvement of professional support, and of families and carers is central. Parents may require training and emotional support to interact effectively with a deafblind child, while adult caregivers may need assistance in adapting to the changing relationships, roles, and routines.
Relationships are key
Let’s take a brief detour into the world of developmental psychology and consider the words of the American social psychologist Kenneth Gerges:
“Individuals, themselves, cannot ‘mean’ anything: their actions are nonsensical until coordinated with the actions of others. If I extend my hand and smile, the gesture hovers at the edge of absurdity until reciprocated by another.”4
What Gergen is driving at here is that meaning, and in this context, communicative meaning, can only be successful within a relationship of attunement to the other. Within the deafblind field, this means skilled and competent communication partners who are able to use a variety of tactile and other communication systems to help make meaning of the world. No one is born as a language user, and we are all scaffolded into language by more competent partners, and this remains equally true for those who transition from one language system to another, such as from BSL to Deafblind Manual. Within the deafblind field, this may often mean the development of partner competencies within the bodily-tactile modality to develop on-body gestural language, or to augment established sign language, for instance.
Legal and policy context in England and Wales
In England and Wales, deafblind people’s rights to assessment and support are established in law. The Care Act 2014 (England) introduced the principle of wellbeing as a guiding aim of adult social care and placed clear duties on local authorities to assess individuals with complex needs, including those with dual sensory impairment.
The accompanying Care and Support for Deafblind Adults and Children Policy Guidance (2014) sets out how local authorities must identify and support individuals who are deafblind. This includes:
- Specialist assessments conducted by people with specific training in deafblindness.
- Provision of intervenors, Communicator Guides, interpreters and accessible information.
- Support to develop and maintain communication and promote independence.
In Wales, the Social Services and Well-being (Wales) Act 2014 places similar duties on local authorities to assess the needs of people with sensory loss, and recognises the importance of person-centred, co-produced care planning. The All-Wales Standards for Accessible Communication and Information for People with Sensory Loss reinforce this by requiring public services to anticipate and meet the communication needs of people with dual sensory loss.
The British Sign Language (BSL) Act 2022 is also a significant step forward. While its primary focus is BSL, the Act establishes the principle of language equity and commits government to promoting BSL in public services. This is an opportunity to ensure tactile BSL and other adapted forms of sign communication for deafblind individuals are included within future strategies and awareness campaigns.
So, where are we now?
Despite clear legislative entitlements, provision across England and Wales can be inconsistent. Too often, deafblind people are not assessed by someone with appropriate training, or cannot access specialist services such as Communicator Guides, intervenors, or deafblind rehabilitation support.
There is no national strategy to develop a specialist workforce for deafblind individuals, and many local authorities commission support through general sensory services, with limited understanding of the compounded barriers faced by deafblind individuals. As a result, many people, particularly those with additional disabilities or co-morbidities, from minoritised communities, or in rural areas, are left isolated and unsupported.
Deafblind UK is the leading organisation, led by and for people who are deafblind. We work to enable people living with deafblindness through holistic care and assistance, pioneering research, transformative education, influential advocacy, and innovative technology integration. Within our strategy, we consider five areas of impact:
- Working with the wider community to improve the care, support, and information that people impacted by deafblindness receive.
- Educating others, including those who are impacted by deafblindness and the wider local, national and international communities.
- Researching deafblindness to better understand the condition and identify interventions that will improve the lives of those affected by deafblindness.
- Influencing the decision makers for the benefit of those impacted by deafblindness and their communities.
- Supporting the use of technology for people who are deafblind and for those who work with people who are deafblind.
In addition, Deafblind UK have recently developed, in partnership with Birmingham City University, the Deafblind UK Centre for Education and Research, which is already connecting researchers, practitioners, and people living with deafblindness to increase knowledge and raise awareness. This groundbreaking centre is a first of its kind within the UK and heralds a spearhead for global research and development around the condition.
Deafblindness is often misunderstood, underdiagnosed and underresourced. There is a pressing need to develop greater insights and research within the field, and to continue to grow and develop professional and appropriate services throughout the country. This effort requires a person-centred and collaborative focus. Helen Keller, perhaps the most influential deafblind person in history, and who’s birthday falls within deafblind awareness week alluded to this in her writing: “Together we can do so little, together we can do so much”. Let us use this deafblind awareness week as a springboard for creating an inclusive and accessible world for us all.
References
- https://www.gov.uk/government/publications/deafblind-people-guidance-for-local-authorities
- https://nordicwelfare.org/pub/Nordic_definition/
- https://www.deelkracht.nl/
- p.242, Gergen, K.J., (1991). The saturated self: Dilemmas of identity in contemporary life. New York: Basic Books
