11 June 2012

What's the Deal with DeafBlindness? FAQs


We've all learned about Helen Keller and her teacher Annie Sullivan in school, but what's it like to be deaf and blind in everyday life? Check out answers to some of our most frequently asked questions, and add your own in the comments!

What is deafblindness?
Deafblindness, also written as deaf-blind or DeafBlind, refers to a condition in which a person has little or no useful hearing or sight.

Does deafblind mean a person can't see or hear anything?
Sometimes, but usually people who are deafblind have some degree of usable hearing or vision. The legal definition of deafblindness according to the federal government (with respect to special education ordinances) is as follows; someone is deafblind when they have "concomitant hearing and visual impairments, the combination of which causes such sever 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."

How do people become deafblind?
About half of deafblind people have Usher syndrome, a genetic disorder that generally presents in three ways. In one type, a person is born deaf, then loses his or her sight around the teenage years; in another the person is born hard-of-hearing and loses his or her sight later in life, or in the third version the person is born with normal hearing and vision and both senses degenerate later in life. People with Usher syndrome generally lose their sight due to retinitis pigmentosa, which is marked first by decreased vision in low light, then by loss of peripheral and side vision (tunnel vision), followed by a final loss of central vision.  Other people become deafblind from birth trauma, accidents, or other illnesses.

How do deafblind people communicate?
The way deafblind people communicate depends largely upon their degree of hearing and vision loss and at what point they've experienced these losses.  A person deafblind from birth may use sign language (either visual within his or her field of vision, or tactile) and braille, while a person with a milder degree of hearing or vision loss may use technology (hearing aids, cochlear implants) to facilitate speech, and consume written text via large print magnification devices or audio books.

What is tactile sign language?
Tactile sign language refers to the method of communication during which the receiver places his or her hands on top of the signer's to feel the handshapes and movement of the signs (in the States, ASL). Some deafblind people also use tactile fingerspelling systems distinct from ASL, in which the signer utilizes the two-handed manual alphabet of British Sign Language (BSL) or the Lorm deafblind manual alphabet, pictured above, to spell words on the receiver's hand.  Some people also spell using Block, a method of using one's index finger to print block letters into the deafblind person's palm. Click here to see a chart of the ASL and BSL alphabets.

What is braille?
Braille is a series of raised dots that the user can feel to consume printed material like books and magazines. Moon code is another tactile reading system, though rather than dots Moon more closely resembles raised letters, and is most often used by those with later onset sight loss who already know the look of the alphabet.

Can deafblind people live independently?
Deafblind people go to school, work and lead independent lives.  Many deafblind people live and work in urban areas so as to have easy access to public transportation.  There are also a variety of training programs offered by schools, governmental agencies and charities through which deafblind people can learn important independent living skills and get support from Support Service Providers (SSPs), who help deafblind people in navigating specific environments (i.e. grocery stores) to complete errands.  Many deaf people serve as SSPs for deafblind people, as sign language is often the easiest method of communication for people who are deafblind.  Deafblind people also utilize technology, including glasses and other magnification tools, hearing aids, cochlear implants and FM systems, modified computers, canes (a white cane signifies blindness, while a cane with a red stripe signifies deafblindness) and guide dogs to help with everyday tasks.

How many deafblind people are there in the US?
The US Department of Education's statistics show that as many as 700,000 people have some degree of both hearing and vision loss, while the National Association of Regulatory Utility Commissions reports 70,000-100,000 people in the US are deafblind.

Is there a DeafBlind cultural identity?
Deafblind people are unique in their individual cultural and communicative preferences, which are likely developed depending on when and to what degree they've experienced hearing and vision loss. Many deafblind people, particularly those who use sign language, identify with the Deaf community.  There is also the assertion that the use of Braille and the camaraderie brought on by interacting with the world in a largely tactile manner are tenets of Blind culture, with which some deafblind people may also identify. DeafBlindness, noted with capital "D" and "B"s refers to a cultural minority in its own right; according to the executive director of the AADB,  the main components of DeafBlind culture refer to the unique way in which "touch, time, social interaction, and communication" are experienced by deafblind people.

Who are some famous deafblind people?
The most famous deafblind person is likely Helen Keller, who was a writer and public speaker and the first deafblind person to earn a Bachelor of Arts degree. Other notable deafblind people include Romanian sculptor Vasile Adamescu, poet Richard Kenney technology expert Anindya Bhattacharyya, French Biographer Yvonne Pitrois, and novelist and inventor of the hand-touch alphabet Hieronymus Lorm.  British poet Jack Clemo and Spanish painter Francisco Goya both became deafblind as adults.

For more information, visit the American Association for the Deaf-Blind, or ask via comment or email!

2 comments:

  1. I often feel sad the whole 'Deaf' thing online virtually refuses to recognise the deaf-blind. We know deaf-blind an contribute online and have a view, but finding them in the 'Deaf' area is almost impossible, I would personally be interested in knowing how THEY feel about their omission from the deaf culture and access things. Helen Keller yes, but ANYONE else ? NOT in the USA !

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  2. Hi MM--
    Thanks for your comment. I'm not sure that Deaf culture refuses to recognize the DeafBlind, although more likely people can be forgetful sometimes. At least here in the US we tend to see them associated quite a lot: Deaf people often serve as SSPs for the DeafBlind; a few months ago the ASL Slam in NYC hosted a DeafBlind poetry night, which was great, and was attended by Deaf and DeafBlind people both, etc.

    As for how DeafBlind people feel about their possible exclusion, we can't speak to that, but I would direct you to the American Association for the Deaf-Blind, which features links to sites and organizations run for and by DeafBlind people. Of course, we are always open to guest posts by writers who could better speak to certain cultural experiences.

    And with regard to famous DeafBlind people, take a look at our list in the final question of the post. Besides Helen Keller, none of these people are from the United States. And of course, that's not a comprehensive list, just a sample; there are many other notable DeafBlind people across the world-- a quick Google will turn up lots of results!

    Thanks again for reading!

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