Imagine experiencing the world without two senses most of us take for granted. Approximately 70,000 Americans live with deafblindness—a dual sensory loss that creates unique challenges for communication, mobility, and daily life. Far from being isolated from the world, this community has developed remarkable ways to connect, learn, and thrive.

Deafblindness isn't always total darkness and silence. The term covers a spectrum. Some people are completely deaf and blind, while others have residual hearing or vision they can use with assistive technology. About 10,000 children and youth in the U.S. are identified as deafblind, and around 90% have additional physical, medical, or cognitive disabilities that compound the challenge.

The Most Common Culprit

Usher syndrome causes about half of all hereditary deafblindness cases in America. People with this genetic condition are typically born deaf or hard of hearing, then gradually lose their vision during adolescence or early adulthood due to retinitis pigmentosa. The syndrome affects roughly 1 in 23,000 Americans—around 25,000 people total—making it the leading cause of deafblindness.

Other causes include premature birth complications, infections during pregnancy (like rubella or cytomegalovirus), age-related conditions, traumatic injuries, and rare genetic disorders. Helen Keller, America's most famous deafblind person, lost both senses at 19 months old after an illness, likely scarlet fever or meningitis.

Communication Gets Creative

How do you talk to someone who can't see your face or hear your voice? The deafblind community uses several ingenious methods:

Tactile sign language – The person places their hands on the signer's hands to feel the shapes and movements
Braille – For those who lost their senses later in life and already know English
Pro-tactile communication – A newer philosophy where touch conveys not just words but environmental context and emotional nuance
Support Service Providers (SSPs) – Trained professionals who provide information about the environment and facilitate communication

Technology has opened new doors too. Refreshable Braille displays connect to smartphones and computers. Apps can convert speech to vibration patterns. Some people use cochlear implants for hearing or have enough residual vision to read large text on screens.

Independent Living Is Possible

The Helen Keller National Center for Deaf-Blind Youths and Adults maintains a national registry of deafblind individuals and operates 11 regional offices across the country. In 2010 alone, the center served 72 adults in intensive training programs and helped 1,478 consumers through regional programs. They teach skills like navigation, cooking, personal care, and job training.

Mobility presents one of the biggest challenges. Without vision to see obstacles or hearing to detect approaching vehicles, getting around requires extensive training and often a support person. Many deafblind people use canes and rely on tactile landmarks—feeling changes in pavement texture, counting steps, memorizing routes through touch and smell.

The Americans with Disabilities Act requires accommodations, but gaps remain. Imagine trying to order food at a restaurant when you can't see the menu or hear the server. Or navigating a hospital emergency room. Or participating in a work meeting. Each situation requires creative problem-solving and often patient advocacy.

Yet this community has produced artists, activists, scholars, and athletes. They've proven that human connection and achievement don't depend on any single sense—or even two. They just require determination, support systems, and a society willing to accommodate different ways of experiencing the world.

Related Tags