Getting to Know the Miracle of Living with Deaf-Blindness

Helen Keller, deaf-blind graduate from college

Helen Keller is the most well-known deaf-blind person. With the advocacy of her teacher, Annie Sullivan, and her own determination, Helen proved one could undertake higher education and graduate.

 

 

We all know about Helen Keller, notably through the astonishing performance by Patty Duke in The Miracle Worker. Helen Keller is the most famous deaf-blind person; her name is a household word – and rightfully so. Yet, many people do not fully understand what it is to be deaf blind. With that, President Ronald Reagan in 1984 proclaimed the last week of June as Helen Keller Deaf Blind Awareness Week. To keep the awareness fresh, every year the Helen Keller National Center for Deaf-Blind Adults Youths and Adults (HKNC), publicizes this important declaration with a national campaign. HKNC is part of the National Family Association for the Deaf-Blind (NFADB).

 

 

What Is Deaf-Blindness?

What is deaf-blindness? According to the NFADB, “The term ‘deaf-blind’ seems to indicate the sum of deafness + blindness. However, the combination of these two sensory losses is much more like deafness multiplied by blindness = Deaf-blindness.” The combined loss of both senses poses unique challenges, with independence, access to  information, interpersonal communication, and special navigation is indeed profound. However, contrary to what most people believe, deaf-blindness is not a total loss of seeing and hearing. This is rarely the case. The National Center on Deaf-Blindness (NCDB) provides an excellent overview of the condition covering children, assessment in school, educational services, environment, communication, social-emotional concerns, and motor-movement issues.

 

Assistive technology in the form of Augmentative and Alternative Communication (AAC) devices are an important pathway to accessibility to full inclusion in society and independent living. http://www.assistivetechnologycenter.org/at/augmentative-communication  For New Jersey residents, the Advancing Opportunities Assistive Technology Center can be an excellent resource, offering both one-on-one assistance and the chance to try out costly equipment before committing to a purchase.

 

 

A Famous Deaf-Blind Person (Aside from Helen Keller)

Haben Girma is an Eritrean-American woman who was the first deaf-blind person to graduate Harvard Law School. As an attorney, she has been an outspoken disability advocate for inclusion, accessibility, and Universal Design. Haben recently with current Canadian Prime Minister Justin Trudeau, along with former Presidents Barack Obama and Bill Clinton, all of whom have praised her important work as a disability advocate and self-advocate.

 

 

Usher Syndrome

The most common form of deaf-blindness is a condition called Usher syndrome. Usher syndrome is characterized by hearing loss, combined with a loss of vision over time and deficiencies in balance, as the condition starts in the inner ear. There are three types of Usher syndrome, which are characterized by the severity of the symptoms. Usher syndrome is genetically inherited.

 

 

Did You Know?

  • Nearly 10,000 children and young adults are deaf-blind.
  • Some 2.4 million people in the U.S. have combined vision and hearing loss.

 

 

Further Resources

Project Sparkle Family’s Guide

Deaf-Blind Education

Eye on the Cure Blog 

Deaf-Blind International

National Coalition on Deaf-Blindness

European Deaf-Blind Network

 

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