Deafblind people have the double impairment of being both deaf and blind. In this article, Ability Central will address seven keys to understanding what the deafblind diagnosis means for the person and their family, including:

• What is deafblindness?
• How many people are considered deafblind?
• What is the history of the word “deafblind”?
• What causes deafblindness?
• What unique challenges does a person who is deafblind face?
• What is the long-term outlook for people who are deafblind?
• Where can I get more information about deafblindness?

What is deafblindness?

Deafblindness is a combination of both sight and hearing loss. It affects a person's ability to communicate, access information, and move around safely.

The definition of deafblind is broad, so people with the diagnosis vary widely in the degree and type of vision and hearing loss they experience. A deafblind person will usually not be totally deaf and completely blind, but both senses will be reduced enough to cause significant difficulties in everyday life.

How many people are considered deafblind?

There are roughly 45,000 to 50,000 deafblind individuals in the US. Exact numbers are difficult to capture because the percentage of vision and hearing impairment varies widely.

What is the history of the word “deafblind”?

In 1991, the International Association for the Education of the Deafblind (now known as Deafblind International) resolved to drop the hyphenated spelling of “deaf-blind” and adopt “deafblind.” The purpose: to show that this is a unique disability rather than the sum total of a vision plus a hearing loss. 

Some people who are deafblind may choose to identify as DeafBlind. When someone uses the capitalized “DeafBlind,” it usually suggests their cultural identification as a member of a community of people who communicate in similar ways. Conversely, “deafblind” or “deafblindness” refers to the medical view of a deafblind person as an individual who has impaired hearing and sight, but it makes no reference to the person’s language and cultural affiliation.

What causes deafblindness?

Over 80 different causes and conditions of deafblindness have been identified. Some people are diagnosed at birth, and some are diagnosed later in life. 

Congenital deafblindness means the person was diagnosed at birth. Any of the following may cause congenital deafblindness:

• Premature birth (birth before 37 weeks of pregnancy)
• An infection in the mother
• A genetic condition
• Fetal alcohol syndrome 

Acquired deafblindness means the person was not deafblind at birth but later developed it. This type of deafblindness usually means the person previously had hearing or vision problems and later acquired the other. Any of the following may cause acquired deafblindness:

• Age-related hearing or vision loss
• Usher syndrome 
• Diabetic retinopathy 
• Damage to the brain

To learn more, see Early Signs and Symptoms Someone May Be Deafblind. 

What unique challenges does a person who is deafblind face?

Deafblindness is sometimes referred to as  "dual sensory loss" or "multi-sensory impairment." The loss of multiple senses brings unique challenges to people with this diagnosis as they try to make sense of the world around them with much less information than someone with only visual or hearing impairments. This creates immense barriers to equal access to information, and significantly affects a person’s ability to communicate effectively and independently. 

What is the long-term outlook for people who are deafblind?

The overall impact of deafblindness on an individual’s learning and development is significantly impacted based on variables including:

• The age deafblindness started
• Degree and type of vision and hearing loss
• The type of interventions provided
• Educational history
• Presence of other disabilities

While the underlying causes of deafblindness are often untreatable, a range of care and support services is available to help people with the condition. The level of care and support they need will depend on the severity of their hearing and vision problems.

Where can I get more information about deafblindness?

Ability Central has an entire library of articles to help you learn about deafblindness.

• Early Signs and Symptoms Someone May Be Deafblind
• First Steps After a Deafblind Diagnosis
• Planning Long-term Support for Someone Who Is Deafblind