Receiving a deafblind diagnosis can be overwhelming. In this article, Ability Central will address the first steps after receiving a diagnosis, including:

• Why is a deafblind diagnosis isolating?
• How is the ability to communicate impacted by deafblindness?
• How can a family or friend best support someone who is deafblind?
• Where can I get more information?

Why is a deafblind diagnosis isolating?

While each person’s experience with deafblindness is unique, isolation is a consistent factor. Vision and hearing connect people with a world beyond their personal body space. A person who is deafblind cannot listen to or read the sign language of someone speaking or signing to him at a distance. They cannot passively observe what other people are doing or observe their environment. 

Because deafblindness severely limits the opportunity for a person to have contact with others, people who are deafblind often rely on others to help them access, interpret, and organize information from the surrounding world. This causes a sense of isolation that can be overwhelming.

The degree of isolation is often associated with the age of diagnosis, the degree of hearing impairment, the degree of vision impairment, and other co-existing conditions.

How is the ability to communicate impacted by deafblindness?

Blind people who have acquired deafblindness after they learned to speak may continue to express themselves through speech, but they often must learn a new mode of receiving language.

Deaf people who lose vision after learning sign language may continue to express themselves through sign language, but they often must learn to receive communication in a modified form.

When communicating with someone who is deafblind, physical touch is often essential. Being hand-in-hand allows for communication through a physical connection. Families and caregivers need to understand that hands are the ears, eyes, and voice of many people who are deafblind. 

One of the most common forms of communication for deafblind people is tactile signing. The deafblind person places their hands over those of the signer to follow what is being communicated through touch and movement. 

Depending upon the degree of vision and hearing impairment, other forms of communication may include the following:

• Speaking clearly if the deafblind person has enough vision and hearing
• Braille uses a series of raised dots to represent letters or groups of letters
• The Moon alphabet uses raised, adapted capital letters that are simpler to feel than braille

How can a family or friend best support someone who is deafblind?

The most supportive thing family and friends can do is to learn how to communicate with the deafblind person in the way they choose to communicate.

Also, respect the autonomy of the person who is deafblind like you would any other person. For example, while touch is essential, the deafblind person must always consent to the contact. Do not force them to touch something or move their hands without permission.

It is important to identify yourself each time you interact with a deafblind person and tell them when you are leaving the room.

In addition, understanding unfamiliar environments and experiencing things outside of a routine can be challenging for someone who is deafblind. Helping them to feel safe and calm is essential.

Where can I get more information about deafblindness?

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

• Seven Quick Facts About Deafblindness walks you through the basics of the diagnosis.
• Early Signs and Symptoms That Someone May Be DeafBlind helps you know when and how to seek a diagnosis.
• Planning Long-term Support for Someone Who Is DeafBlind shows you how to plan for as much independence as possible for a person diagnosed with deafblindness.