Sanford School of Medicine Center for Disabilities

Deaf-Blind Program - Overview of Deaf-Blindness

What is deaf-blindness?
When most people hear the term "deaf-blind" they automatically think of someone who has no vision or hearing - like Helen Keller. In reality, the term is used to cover a diverse group of individuals who have some combination of a vision loss and a hearing loss. Even a mild or moderate loss of one sense can create significant challenges when combined with a loss in the other sense. However, even though their losses may not be totally correctable by hearing aids, glasses or surgery, people who are deaf-blind can often learn to use their residual vision and/or hearing along with their remaining senses.

What causes deaf-blindness?
There are many possible causes of combined vision and hearing loss. Some are present at birth or in early childhood while others develop later in life. The leading causes of deaf-blindness include complications of prematurity, genetic disorders (CHARGE Syndrome, Down Syndrome, Usher Syndrome, etc.), prenatal/congenital complications (Congenital Rubella, Cytomegalovirus, Fetal Alcohol Spectrum Disorders, etc.), and postnatal/non-congenital complications (asphyxia, infections, severe head injury, etc.) that can occur at any time in the person's life. Because of all the different possibilities, a person who is deaf-blind must be viewed as an individual with a unique history impacting his or her life. The needs and challenges of a person who is deaf and then becomes blind are very different than those of a person who is blind and then becomes deaf. The needs and challenges of a person who has both a vision and hearing loss at birth are also unique.

What does a deaf-blind person experience?
Of all our senses, sight and hearing are the ones that allow use to reach far beyond ourselves. For this reason, they are known as our "distance senses." So it naturally follows that losing part of all of these distance senses can severely limit a person's experiences in the world. For someone who is totally deaf-blind, their universe extends only as far as their arms can reach. People with some usable hearing and/or vision may still have significant misperceptions about the world due to confusing or incomplete information. Without intervention, assistance and education, a person who is deaf-blind will likely experience significant isolation and loneliness.

What are the most important needs of a person who is deaf-blind?
The most important need of a person who is deaf-blind is the same need we all have - to connect with the world around us, especially with the people in their lives. For people without a vision and hearing loss, many methods of connecting with others are readily available to us. These methods range from the most basic - speaking and listening, to high tech using telephones and computers. When a child or adult is experiencing a loss of sight and hearing, many of those communication methods become difficult or impossible to access. However, communication remains his or her most important need, so alternative communication method may need to be developed, taught and utilized to achieve the goal of connecting with others. Some methods assist any residual hearing by using amplification, such as hearing aids or assistive listening devices. Others use residual vision through magnification or sign language. A third group of communication techniques utilizes touch only, requiring no vision or hearing. Examples of this group include tactile sign language and Braille. Ideally, people with a combined vision and hearing loss would have access to a variety of methods for different settings, allowing them to communicate effectively with their loved ones, acquaintances and even strangers.

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