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The DeafBlind Spectrum
The DeafBlind Spectrum
DeafBlindness is a complex disability distinct from being Deaf or blind. DeafBlindness comes with its own unique nuances in terms of language use, accommodations, community engagement, access to resources, and everyday living. For example, a voice-over software that may be accessible to a blind individual, may not be accessible to a DeafBlind individual; while a standard sign language interpreter that may be accessible to a Deaf individual may not be accessible to a DeafBlind individual.
The DeafBlind spectrum includes all variations of hearing and vision loss. Some DeafBlind individuals do not see at all, while others have vision within an isolated range. Some DeafBlind individuals use hearing aids, while others do not. Each Deafblind individual is a unique human being with needs, desires, and goals that may differ from other DeafBlind individuals.
The complexity and nuances of DeafBlindness require a dedicated, unique, and interpersonal approach to inclusion, accessibility, and accommodations with expert consulting from DeafBlind community leaders.
DeafBlind Communicative Practices
Because of the variety and diversity of the hearing and vision range within the DeafBlind spectrum, each DeafBlind individual has their own preference for communication and language use. When deciding how to most appropriately engage a DeafBlind individual in conversation, the most important thing to do is ask them what they prefer.
Pro-Tactile Sign Language
Sign language is employed in the hands and on the body of the receiver. Pro-Tactile is unique in that it adheres to its own set of linguistic rules and norms (Edwards, 2014). No vision or sight is required to converse in this way.
Sign Language
Sign language can be used to converse with DeafBlind individuals within their field of vision. Different DeafBlind individuals have differing ranges of vision, so it is important to know how physically close the DeafBlind individual prefers you to be when conversing.
Braille
Braille is a system of reading using raised dots to represent numbers and letters. No hearing or vision is required to read braille.
Voice-Over SoftWare
DeafBlind individuals with some degree of hearing ability may prefer to use voice-over software when reading emails and texts, accessing websites, or accessing any other electronic-based reading.
Spoken Language
DeafBlind individuals with some degree of hearing ability may prefer to use spoken language to communicate.
Tactile Cues and Symbols
Tactile cues, symbols, and objects can be useful when interacting with a DeafBlind individual who prefers to communicate via touch and may not have access to a shared formal language.
There are many more ways to communicate with DeafBlind individuals that are not listed here. Again, it is always appropriate to ask before assuming how a DeafBlind individual prefers to communicate.
Reference
Edwards, Terra. 2014. “Language Emergence in the Seattle DeafBlind
Community.” PhD diss., University of California.
What Causes DeafBlindness?
What Causes DeafBlindness?
DeafBlindness is known to be caused by over 70 sources. CHARGE Syndrome, Usher Syndrome, and complications of prematurity are thought to be the most prevalent causes.
CHARGE Syndrome
CHARGE Syndrome
Image Source: chargesyndrome.org
Image Description: Philip Wismer stands in front of a brick wall wearing dark sunglasses, a black baseball cap with the words "Gallaudet Bison", a green shirt with the Gallaudet Bison logo, and a lanyard around his neck with the word "GALLAUDET" printed in sequence. The brick wall shows the word "GALLAUDET" in large blue letters on a white background. Philip is smiling at the camera.
CHARGE Syndrome is a complex and multi-faceted genetic disorder that affects various systems in the human body ranging from the cardiac system to sensory systems. CHARGE Syndrome is recognized as one of the most common causes of congenital DeafBlindness. Click on the button below to learn more about CHARGE Syndrome.
Usher Syndrome
Usher Syndrome
Image Source: usher-syndrome.org
Image Description: A close-up photo of a person's eye. The eye is blue and facing to the left of the frame. Eyelashes unfurl from above and below the eye.
Usher Syndrome is a genetic disorder that affects vision, hearing, and balance. There are three types of Usher Syndrome and all typically lead to moderate to severe hearing loss and progressive vision loss. It is cited as a leading cause of DeafBlindness. Click on the button below to learn more about Usher Syndrome.
Down Syndrome
Down Syndrome
Image Source: ndss.org
Image Description: An individual with Down Syndrome smiles at the camera standing on a train platform wearing a university hoodie, holding a phone and a facemask, with an earbud in one ear connected to their phone. The photo is in black and white.
Down Syndrome is a chromosomal disorder associated with cognitive disability. Individuals with Down Syndrome are more prone to vision and hearing loss compared to individuals without Down Syndrome. Click on the button below to learn more about Down Syndrome.
Some General Questions:
Who should decide the language of instruction in education systems for DeafBlind learners?
Image Description: A simple logo of a white figure wearing a graduation cap, surrounded by the gray outline of the tip of a fountain pen on a white background.
Who knows the most appropriate approaches to serving DeafBlind community members?
Image Description: A simple logo of five figurines whose bodies flow together in a spiral at the center on a white background. Their right arms are raised while their left shoulders reach toward the figure to their left. Each figure is a different color (red, blue, green, yellow, purple).
Who has the experience and knowledge necessary to consult on DeafBlind accommodations?
Image Description: A simple logo of the outline of a lightbulb with two gears in the center on a white background. The gears and the lightbulb outline are light-blue.
Answer: DeafBlind Community Leaders and Members
DeafBlind leaders are emerging across the world, advocating for inclusion in decision-making processes that affect DeafBlind community members. DeafBlind individuals know the DeafBlind community best.
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