Who is this useful for?
People with deafblindness, parents/caregivers, teachers and general public.
This page tells you what deafblindness is. It also covers the different types of deafblindness, its causes in newborn children and adults, diagnosis, signs of deafblindness, treating the underlying causes and managing the condition.
On this page:
What is deafblindness?
Deafblindness is a disability in its own right but is still not recognised as such in all countries.
It means you have sight and hearing loss that affects your everyday life. Access to information, communicating with people and getting about on your own can be much more difficult.
Being deafblind doesn’t necessarily mean you are totally deaf and/or totally blind. Most people who are deafblind have some sight and some hearing.
Even with mild sight and hearing loss, you’ll still experience challenges because of how having both sight loss and hearing loss affects you.
World Federation of the Deafblind defines deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability. However the legal definition can vary from country to country.
Who does deafblindness affect?
Deafblindness affects people of all ages, including children and young people.
It is more common in older people, because our sight and hearing naturally worsen as we get older.
Research has shown that 0.2% of the world’s population is living with severe deafblindness. A further 2% of people around the world are living with milder forms of deafblindness.*
This means approximately that 160 million people are affected by deafblindness.
* World Federation of the Deafblind (2023) The Second Global Report on the Situation of Persons with Deafblindness: Good Practices and Recommendations for the Inclusion of Persons with Deafblindness March 2023
Types of deafblindness
There are two main types of deafblindness.
Congenital deafblindness
Congenital deafblindness means you are born with sight and hearing impairment, or it becomes apparent within the first two years of life.
This may be because of infections during pregnancy, premature birth, birth trauma (physical injury) and rare genetic conditions (conditions you inherit from a parent).
Acquired deafblindness
Acquired deafblindness means you develop sight and hearing loss later in life. Anyone can become deafblind at any time through illness, accident or ageing.
Sometimes, you can be born with either a hearing impairment only or a vision impairment only, but as you age your other senses also start to change or worsen.
Other names for deafblindness
Deafblindness is also known as:
- Dual-sensory impairment.
- Multi-sensory impairment.
Many people use these terms to mean the same as deafblindness.
Some people choose to use “deafblindness” to describe more severe sight and hearing loss.
Others prefer “dual-sensory” because they feel it describes more accurately how it feels to be deafblind.
Then there are others who feel “multi-sensory impairment” is more accurate.
This is because it may be about how your brain handles the information it gets from your ears and eyes, not about how your ears and eyes function. Other senses, such as touch, taste or smell might also be affected.
What causes deafblindness?
There are many causes of congenital deafblindness and acquired deafblindness.
Causes of congenital deafblindness
Congenital deafblindness can be caused by:
- Problems associated with premature birth – birth before 37 weeks of pregnancy.
- An infection in a baby in the womb, such as rubella (German measles), toxoplasmosis or cytomegalovirus (CMV)
- Medical complications during pregnancy and birth – including poor nutrition and trauma
- Genetic conditions, such as CHARGE syndrome or Down syndrome.
- Cerebral palsy – a problem with the brain and nervous system that mainly affects movement and co-ordination.
- Foetal alcohol syndrome – health problems caused by the mother drinking alcohol while pregnant.
Causes of acquired deafblindness
Acquired deafblindness can be caused by:
- Age-related hearing loss.
- Usher syndrome – a genetic condition that affects hearing, vision and balance.
- Age-related eye problems, such as age-related macular degeneration, cataracts and glaucoma.
- Diabetic retinopathy – the cells at the back of the eye are damaged by high blood sugar levels.
- Brain damage from, for example, meningitis, encephalitis, a stroke or severe head injury.
- Cerebral Malaria
Spotting the signs of deafblindness
Some common signs of hearing loss include:
- Not hearing someone if they speak to you from behind.
- Being startled because you didn’t hear someone coming into the space you’re in.
- Needing to turn up the volume on the television, radio or mobile phone.
- Delay in responding to people talking to you.
Common signs of sight loss include:
- Finding it harder to see clearly in low light or bright light.
- Not recognising people you know, especially in unexpected situations.
- Relying on touch to find and identify items more than usual.
- Having to hold books, newspapers or your mobile phone close to your face, or sit close to the television.
If you already have a hearing impairment/Deafness, and maybe wear a hearing aid or use sign language, look after your eyes. Watch out for signs that you are also developing sight loss and seek support to get an eye check from an Ophthalmologist. Ideally this should be done regularly.
If you already have a sight impairment and maybe wear glasses, use a cane to get around or have a condition such as glaucoma or cataracts, look after your hearing. Watch out for signs that you are also developing hearing loss and seek support to get a hearing test from an Audiologist. Ideally this should be done regularly. If you spot any of the above signs, speak to your local doctor or health professional as soon as possible.
The sooner deafblindness is diagnosed, the sooner treatment, if that is an option, or management of the condition can begin and the more helpful this is likely to be. This is especially important for babies and young children as they are growing and developing their communication skills and other development milestones.
This information has been provided by Sense, a leading disability charity based in the UK supporting people with complex disabilities, including deafblindness.
This has been edited for an international audience (2024).