I salute your decision to follow the lead of AADB and recognize the term "deafblind."
Maurice: Deaf-blind or deafblind: Why We Still Use the Hyphen
When searching websites and resources about deaf-blindness, you may wonder why you sometimes see deaf-blindness spelled with a hyphen and at other times without (i.e., deaf-blind and deafblind). There is an opinion that by merging the two words into one without a hyphen, the new word more accurately reflects the uniqueness of the disability. Deaf-blindness isn’t simply deafness plus blindness; the combination of the two creates something that is bigger and more significant than the parts of the whole.
I understand the rationale for merging the two words. At CDBS, however, we made the decision many years ago to follow the lead of the American Association of the Deaf-Blind (AADB), which is the largest consumer group in the U.S. of teens and adults who are deaf-blind. AADB currently spells deaf-blindness with a hyphen. If it changes the spelling in the future, CDBS will follow their lead and make the change as well.
With that said, it is probably more important to understand what the term really means. I often say that to be told that a child is deaf-blind doesn’t really tell you much about how or what the child might actually see and hear. Visual and auditory information that is missing, decreased, and/or distorted can have a profound impact on how a child learns, communicates, and interacts with the environment. This is one of the reasons that CDBS uses a functional definition of deaf-blindness:
If an individual (birth through age 21) has combined hearing and vision problems that are significant enough to require considerations (such as specialized adaptations, modifications, and strategies) when presenting information or interacting with the child, then that child, along with family members and service providers, is eligible to receive services from CDBS.
You’ll note that here at CDBS, we don’t use our functional definition to label children as having deaf-blindness. That is a process best left to families and local education agencies. The functional definition simply states that if the definition is applicable to a child, then CDBS can provide services to assist the family and educational team to better meet that child’s unique, specialized needs.
Deaf-blindness is a confusing and scary term, and I know this is particularly true for families of children who have recently been diagnosed with vision and hearing issues. For this reason, I hear family members say that their children aren’t deaf-blind, but rather that their children have hearing and vision problems. Others ask us why we use the term at all. I would give two main reasons for continuing its use. The first is that, when a new child is entering a program, the term alerts teachers and administrators that there are critical sensory issues for the child that must be addressed if he or she is going to be fully integrated into the instructional day and the school community. Secondly, the term “deaf-blind” represents a community of children, youths, and adults throughout the world with a rich and proud history of success, innovation, creativity, courage, and undaunted spirit.
Maurice Belote, CDBS Project Coordinator
Topic: Maurice: "Deaf-blind" or "deafblind": Why We Still Use the Hyphen
Subject You held to your word...Reply
By Toni Hollingsworth, MS Deaf-Blind Project
Subject term "deaf-blind" vs deafblindReply
Maurice - as always you have shared very deep insights into this issue, and I appreciate your clear explanation of the thinking behind your efforts. I, too, have this often on my mind, and have recently done a brief web search to discover how the terms are found in the online dictionaries. I have concern that we're not accessible enough for families and professionals in our marketing of ourselves. So, I looked for three different ways of spelling: "deaf-blind," "deaf blind," and "deafblind." What I found in Merriam-Webster's, was that none of the three options exist. On Wikipedia, and Dictionary.com: both only have "deafblind." On the Cambridge Advanced Learner Dictionary, none of the three options appeared. MSN Encarta has "deafblind," but not "deaf-blind," or "deaf blind." The Free Dictionary by Farlex has "deafblind" and "deaf-blindness," but not "deaf-blind," nor "deaf blind." The last one I checked was onlinedictionary.com which also had none of these options.
This really raises some concerns for me that the term, however, written does not even exist in so many places. I think that this fact and other ways that we're not so good about marketing ourselves contributes to perpetuating the "low-incident" nature of the dual sensory loss, and lack of understanding of the impact upon those who live with the combination of loss. I have not yet petitioned these online dictionaries to include all of these combinations so that which ever way a person looks up the definition, one may be obtained with all the possible ways of seeing the concept in text. Obviously, I'm in process with it by sharing this with you and the others reading this blog, and am open for ideas of next steps.
By John Smith
Subject Hello, great blog entry!Reply