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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The Genius of Braille: A Real Eye-Opener

Louis Braille was a disability advocate for the blind.

Louis Braille (1809-1852)

In 1809, on January 4, Louis Braille was born.  At age 5, the curious boy was blinded in an accident with one of his father’s tools.  However, Louis refused to let his disability stop him from getting the most of life.  As a teen at the Royal Institute for Blind Youth in Paris, he self-advocated by developing the system of writing that, to this day, bears his name.  In his honor, the 4th of January has been declared World Braille Day.

Braille’s alphabet consists of a series cells containing, in a 2 x 3 grid, as a raised dot or a blank space. Though there are only six dots or spaces, they can be combined in 64 different ways, allowing for other characters, including letters from the alphabets of other languages.  In other words, braille is not a language, but a code for transcribing many other languages.  Nowadays, there are two main types of braille: Grade 1 and Grade 2.  Grade 1 is a functional letter-by-letter transcription of text.  Grade 2 uses combinations of letters in a single braille character, allowing for much shorter documents; it is the most widely accepted form of braille.

braille-alphabet-2

 Br The basic braille alphabet consists of cells of six dots, raised in a variety of combinations and permutations. There are also symbols for punctuation and letter combinations.

Braille provides access to written communication for blind people, in other words, accessibility beyond physical means such as access ramps.  In other words, braille is a form of inclusion, allowing everyone to participate in an important aspect of society, regardless of their disability.  In creating the braille system for reading and writing for the blind, Louis Braille was advocate and self-advocate for people with disabilities par excellence.  And for his part in developing the braille writer, Louis Braille was also one of the great assistive technology specialists of all time.

 

 

brailler-4

The braille writer creates the raised dots for braille text rather than printing individual letters or characters. As with the typewriter, the basic layout of the braille writer has been incorporated in modern assistive technology braille input devices.

“Access to communication … is access to knowledge, and that is vitally important for us if we [the blind] are not to go on being despised or patronized by condescending sighted people. We do not need pity, nor do we need to be reminded we are vulnerable. We must be treated as equals—and communication is the way this can be brought about.”

—Louis Braille

 

 

 

Learning Ally to Recognize and Honor Six Outstanding Students with Blindness and Learning Disabilities

We're Being Chased by Terns!

     Previously, we featured Brian Meersma, one the clients who benefited from the Advancing Opportunities Assistive Technology Center.  He is now a Freshman at Cornell University, a Dean’s List student with a solid record of achievement through his long-time advocacy and self-advocacy.  On Saturday, April 18, he will be one of six talented people to earn one of Learning Ally’s National Achievement Awards.  These awards recognize outstanding students with print and learning disabilities; they are “role models of success and inspiration to students throughout the country,” according to Learning Ally. Formerly known as Reading for the Blind and Dyslexic, the organization was founded in 1948; its mission is “to promote personal achievement when access and reading are barriers to learning by advancing the use of accessible and effective educational solutions.”  Through the agency, students who are blind or have learning disabilities such as dyslexia have access to the world’s largest library of human-narrated audiobooks, along with the assistive technology that goes along with them.

In addition to Brian, the other winners are:

  • Matthew Guberman-Pfeffer, a graduate student at the University of Connecticut, blind since birth, who aims to become a chemistry professor
  • Mara Schein, a Cornell University student majoring in policy analysis and management
  • Brian Miller, a blind man with a PhD in history, with a focus on disability rights
  • Kelsey Waldron, a Carleton College student exploring various academic areas
  • Valeria Paradiso, a blind graduate student at Hunter College, studying psychology and special education.

What all five individuals share is a dedication to advocating for children and adults who are blind, dyslexic, or have other learning disabilities.

The Gala will take place at the Marriot Marquis in Washington, DC, from 7:00 p.m. to 11:00 p.m.  For more information about this exciting event and to register, please go to the special Web site, at: http://naa.learningally.org/event/gala/