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Deaf Blindness Deaf Blindness I see with my hands and I hear with my body. I feel what you see and I hear through vibrations. -Anonymous What is Deaf-blindness? Deaf-blindess is legally defined as "[having] concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness" (IDEA §300.8 ?[c][2]). A person who is deaf-blind is not necessarily completely deaf and/or blind; rather, the degrees to which deaf-blindness and its combination in individuals vary (deafblindinfo. org). While some may be completely deaf and blind, it is more common for individuals to have some degree of residual vision and/or hearing. The condition of deaf-blindness may occur at any stage in life: some may be born deaf and become blind later on in life; others may be born blind and become deaf later; still others might experience a residual loss of both vision and hearing (AADB). Additionally, some deaf-blind individuals may carry additional physical or cognitive disabilities, though this isn't necessarily a given. Depending on the degree of blindness, deaf-blind persons may utilize sign language or tactile sign language for communication; likewise, if there is some degree of hearing, individuals may choose to utilize spoken language for communication . What Causes Deaf-blindness? There are various ways that people become deaf-blind. Some ways include birth trauma, optic nerve atrophy, cataracts, glaucoma, macular degeneration, or diabetic retinopathy. Some may become deaf and blind through birth trauma. Others might become deaf-blind from causes such CHARGE Syndrome, Congenital Rubella Syndrome Cortical visual impairment, other illnesses or in some instances hrough traumatic accidents (AADB). The most common cause of deaf-blindness, though (accounting for about 50% of cases) is Usher's Syndrome. Usher's Syndrome is a genetic condition in which an individual is born with profound vision and hearing loss or one who is born with profound hearing loss and who experiences vision loss later in life due to retinis pigmentosa (RP). In fact, there are three kinds of Usher Symdrome: Usher Syndrome 1: an individual is born deaf and they lose vision during their teen year Usher Syndrome 2: an individual is born hard-of-hearing and they lose vision during later on in life Usher Syndrome 3: an individual is born with adequate vision and hearing and lose them later on in life (AADB) An excellent resource is a 26-minute video titled, "Silence with a Touch: Living with Usher Syndrome", which was produced by NTID/RIT in cooperation with the NY State Technical Assistance Project Serving Children and Youth who are Deafblind. More information can be found at the following link: http://www.rit.edu/news/story.php?id=45581 Who are Deaf-Blind people? There are approximately roughly 45,000 to 50,000 individuals in the U.S who are deaf-blind. (Gallaudet University Library) This represents a large population of people in America entitled to services. As evidenced by one of the most notable Deaf-Blind people in history, Hellen Keller, schools for the Deaf and Blind were non-existant before 1885. Hellen had to attend the Perkins Institute for the Blind and Wright-Humason School for the Deaf in New York, and The Horace Mann School for the Deaf and Hard of Hearing in Massachusetts separately (http://www.deafblindinfo.org/). The first institute for the Deaf and Blind was established in Florida in 1885. Passing of the ADA and IDEA have ensured that Deaf Blind individuals receive services to help in their lives. These laws apply to people who become Deaf Blind later in life or if they are born Blind Deaf. Services as protected by these laws can be both rehabilitory in nature and/or developmental. People becoming Deaf Blind later in life can receive services to aid in day to day living and adjusting to Deaf Blindness. Children born Deaf Blind are able to obtain services for schooling. According to the 2007 National Deaf-Blind Child Count, over 10,000 are children under the age of 21. (National Consortium on Deaf-Blindness) Experiences of Deaf-Blind Here is the link to a video about the world's only Deaf-Blind triplets. The ten minute film discusses the story of how their parents raise them, the family's setbacks, and successes. https://www.youtube.com/watch?v=8IxZjhD8lkI Here are selections from a poem written by a Deaf-Blind person about their Deaf-Blind identity, including its joys and challenges Blind: Life goes on after deafblindness. But it takes heart and courage to embrace the deafblind lifestyle with open arms and to follow one's own destiny. (...) Deaf people fear blindness and blind people fear deafness as if it were the dreaded plague. Yet it is not a terminal disease. Life must continue into uncharted territory where new discoveries await those who dare to dream. Is it possible for a hearing-sighted or deaf-sighted person to fall in love with a deafblind person 'til death do they part? Of course it is! Love knows no boundaries and does not discriminate against anyone, ever! Many of us do not look deafblind though we may walk amongst hearing and sighted people like aliens in disguise. I find it amazing that people fail to recognize what they see when we walk with our white reflective canes and dog guides. How is it that Congress can be in the dark ages when it comes to meeting the basic needs of deafblind people everywhere? Where are our helpers, the Annie and Andy Sullivans of the world, the Support Service Providers (SSPs), and the support of our representatives and senators who can give us assistance in training, mobility, communication, technology and recreational access? Does it surprise you to find that deafblind people can and do get married, have children, go to work, cook and clean, make love, read and write, surf the web, travel, shop, earn their bachelor or masters degrees, teach, eat out and pursue their favorite hobbies? Or that they can laugh or cry, become angry or defiant, pleasant or calm, or mourn the loss of loved ones? We all share the same human experience (...) Copyright © Ipo 2010 How do Deaf-Blind People Communicate? The method of communication for Deaf-Blind persons depends on individual levels of sight and hearing. While some may be able to communicate using spoken languages, others may be able to communicate through sign language or through written communication. These communication preferences also depend on region, level and type of communication, and personal preferences (AADB). There are other ways for Deaf-Blind people to communicate, or tools for Deaf-Blind persons to use in certain combinations with spoken or signed languages. These include: Adapted Signs: Deaf-Blind persons with some degree of residual vision may prefer others to adapt their use of signing space to meet that individual's field of vison (AADB). For example, the signing space for BELT may be raised from waist to chest-level to fit the range of vision (AADB). Speechreading (Tadoma): those with little to no vision may read speech by placing their thumb on their interlocutor's chin and fingers on the cheek to feel the movement of the lips and the vibration of the mouth area. This method is rarely used nowadays (AADB). Tracking: some Deaf-Blind persons with some degree of vision (tunnel vision) may hold their interlocutor's wrist and control the movement of their signs so that they remain within the Deaf-Blind individual's limited range of vision (AADB). Tactile Sign Language: a mode of signed communication in which individuals place their hand over the hand of another's to feel the shape, movement, location in space, contact, and palm direction of signs.Tactile signing can be one-handed or two-handed. Some signs need to be modified to accomodate tactile signing. For example, DOG may be fingerspelled D-O-G instead of signed DOG for convenience. Tactile Sign Language is a preferred mode of communication for Deaf-Blind persons, though individuals may prefer different kinds of tactile signing. Those with a background in American Sign Language (ASL) may prefer ASL Tactile Sign Language (TSL); those who grew up with more of an oral or English-based background may prefer more of a Contact or English-based tactile signing (AADB). Tactile Fingerspelling: those who lost their hearing or vision later in life and who do not know sign language may find fingerspelling easiest for them to learn. Tactile fingerspelling allows these people access to tactile-based communication without requiring them to learn a signed language. The Deaf-Blind person's hand can be placed over their interlocutor's hand (like that of tactile sign language), they may cup their hand around the other's, or they may place their interlocutor's hand over their palm (AADB). While TSL is similar to ASL, it has its own linguistic system, complete with linguistic features, conversational discourses, and cues. For example, many of the signs remain the same, though signing space may need to be narrowed so signs can be manually tracked in conversation. Additionally, because nonmanual signals cannot be easily conveyed through TSL, information contained in it such as inflection must be communicated manually. For example, while in ASL, yes/no questions are conveyed through the nonmanual signals of the tilt of the head, the raising of the eyebrow, and the holding of the last sign, such questions must be encoded manually through TSL by finishing the statement by signing YES NO or with QUESTION (eg., SICK YOU QUESTION).
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