Deafblindness

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Deafblindness is the condition of little or no useful hearing and little or no useful sight. [1] [2] Different degrees of vision loss and auditory loss occur within each individual. [3] Because of this inherent diversity, each deafblind individual's needs regarding lifestyle, communication, education, and work need to be addressed based on their degree of dual-modality deprivation, to improve their ability to live independently. In 1994, an estimated 35,000–40,000 United States residents were medically deafblind. [4] Laura Bridgman was the first American deafblind person known to become well educated. Helen Keller was a well-known example of an educated deafblind individual. [5] To further her lifelong mission to help the deafblind community to expand its horizons and gain opportunities, the Helen Keller National Center for Deaf-Blind Youths and Adults (also called the Helen Keller National Center or HKNC), with a residential training program in Sands Point, New York, was established in 1967 by an act of Congress.

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The deafblind community has its own culture, comparable to those of the deaf community. Members of the deafblind community have diverse backgrounds but are united by similar experiences and a shared, homogeneous understanding of what it means to be deafblind. [6] Some deafblind individuals view their condition as a part of their identity. [7]

Epidemiology

The medical condition of deafblindness occurs in different forms. [3] For some, this condition might happen congenitally from birth as a result of genetic defect, for others it happens suddenly due to a form of illness or accident that results in a modality deprivation of either vision or hearing, or both. [8] A person might be born deaf and become blind at a later stage in life, or vice versa. In any given case of deafblindness, many possible onsets and causes of this condition exist; some happen gradually, others happen unexpectedly and suddenly. [9] The diagnosis of deafblindness could be medically classified into specific types based on one's symptoms and causes. [4]

The two overarching types of deafblindness are congenital and acquired. [9] [10] : 36–74 

Congenital deafblindness: the condition of deafblindness from birth

Acquired deafblindness: condition of deafblindness developed later in life

Communication

Deafblind people communicate in many different ways as determined by the nature of their condition, the age of onset, and what resources are available to them. For example, someone who grew up deaf and experienced vision loss later in life is likely to use a sign language (in a visually modified or tactile form). Others who grew up blind and later became deaf are more likely to use a tactile mode of spoken/written language. Methods of communication include:

Multisensory methods have been used to help deafblind people enhance their communication skills. These can be taught to very young children with developmental delays (to help with pre-intentional communication), young people with learning difficulties, and older people, including those with dementia. One such process is Tacpac.

Deafblind people often use the assistance of people known as support-service providers (SSPs), who help the deafblind with tasks such as routine errands, guiding the deafblind through unfamiliar environments, and facilitating communication between the deafblind person and another person. [12]

Technology

Braille equipment includes a variety of multipurpose devices, which enhance access to distance communication. Some can be used as stand-alone devices connected via Wi-Fi, while others are paired with a mobile device to provide tactile access to e-mail, text messaging, and other modern communication resources. To receive Braille equipment, an eligible consumer must be proficient in Braille and must have access to the Internet or cellular telephone service.

Telebraille does not have a computer communications modem, but does have a TTY (TDD) modem. It was designed as a TTY for deaf-blind people and is also useful for face-to-face conversation. It has two components: The sighted component is a modified SuperCom TTY device. It has a qwerty keyboard and a single-line LED display. The display is regular size and is not particularly suited to people with low vision. The SuperCom TTY can be connected directly to the telephone line using a conventional telephone jack or the telephone receiver can be coupled to the SuperCom on a cradle on top of the device. Text flows past the display in a continuous stream, like tickertape. The SuperCom is connected to the Braille portion of the device by a cable that is about 2 ft (0.6 m) long. The Braille display is about 15 characters in width, although a knockout allows additional characters to be installed, at considerable additional cost. The Telebraille is able to communicate in ASCII mode, but is not compatible with conventional computer modems. There is what looks like a RS-232 socket on the back of the Braille component, but the instructions for the Telebraille state that this jack is for "future use" and that no computer devices should be attached to it.[ citation needed ]

A graphic Braille display can be used in sensing graphic data such as maps, images, and text data that require multiline display capabilities such spreadsheets and equations. Graphic braille displays available in the market are DV-2 (from KGS [13] ), Hyperbraille, [14] and TACTISPLAY Table/Walk (from Tactisplay Corp. [15] ). For example, TACTISPLAY Table [16] can show 120*100 resolution refreshable braille graphics on one page. [17]

The play The Miracle Worker (1959), which was adapted into the film The Miracle Worker (1962), recounts Anne Sullivan's efforts to draw Helen Keller from her world of blindness and deafness. [18]

The Who’s album Tommy (1969) tells one continuous life story about a deafblind mute boy named Tommy through songs.[ citation needed ]

The Bollywood film Black (2005) featured Rani Mukerji as a deafblind character named Michelle McNally.[ citation needed ]

The film Marie's Story (2014) relates the childhood and education of Marie Heurtin (1885–1921), a deafblind woman.[ citation needed ]

Haben Girma, the first deafblind individual to graduate from Harvard Law School, released an autobiography entitled Haben: The Deafblind Woman Who Conquered Harvard Law (2019). [19]

Feeling Through (2019) is an American short drama film directed by Doug Roland that was the first film ever to star a deafblind actor (Robert Tarango) in a lead role; it is about a teenager and a deafblind man. It was nominated for the 2021 Academy Award for Best Live Action Short Film. [20] [21]

The Persistence of Vision is a 1978 novella by John Varley describing the life of a blind-and-deaf community.

See also

Related Research Articles

<span class="mw-page-title-main">Tadoma</span> Deafblind communication

Tadoma is a method of communication utilized by deafblind individuals, in which the listener places their little finger on the speaker's lips and their fingers along the jawline. The middle three fingers often fall along the speaker's cheeks with the little finger picking up the vibrations of the speaker's throat. It is sometimes referred to as tactile lipreading, as the listener feels the movement of the lips, the vibrations of the vocal cords, expansion of the cheeks and the warm air produced by nasal phonemes such as 'N' and 'M'. Hand positioning can vary, and it is a sometimes also used by hard-of-hearing people to supplement their remaining hearing.

Perkins School for the Blind, in Watertown, Massachusetts, was founded in 1829 and is the oldest school for the blind in the United States. It has also been known as the Perkins Institution for the Blind.

<span class="mw-page-title-main">Telecommunications relay service</span>

A telecommunications relay service, also known as TRS, relay service, or IP-relay, or Web-based relay service, is an operator service that allows people who are deaf, hard of hearing, deafblind, or have a speech disorder to place calls to standard telephone users via a keyboard or assistive device. Originally, relay services were designed to be connected through a TDD, teletypewriter (TTY) or other assistive telephone device. Services gradually have expanded to include almost any real-time text capable technology such as a personal computer, laptop, mobile phone, PDA, and many other devices. The first TTY was invented by deaf scientist Robert Weitbrecht in 1964. The first relay service was established in 1974 by Converse Communications of Connecticut.

<span class="mw-page-title-main">Usher syndrome</span> Recessive genetic disorder causing deafblindness

Usher syndrome, also known as Hallgren syndrome, Usher–Hallgren syndrome, retinitis pigmentosa–dysacusis syndrome or dystrophia retinae dysacusis syndrome, is a rare genetic disorder caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment. It is the most common cause of deafblindness and is at present incurable.

Tactile signing is a common means of communication used by people with deafblindness. It is based on a sign language or another system of manual communication.

Sensory substitution is a change of the characteristics of one sensory modality into stimuli of another sensory modality.

<span class="mw-page-title-main">Cross modal plasticity</span> Reorganization of neurons in the brain to integrate the function of two or more sensory systems

Cross modal plasticity is the adaptive reorganization of neurons to integrate the function of two or more sensory systems. Cross modal plasticity is a type of neuroplasticity and often occurs after sensory deprivation due to disease or brain damage. The reorganization of the neural network is greatest following long-term sensory deprivation, such as congenital blindness or pre-lingual deafness. In these instances, cross modal plasticity can strengthen other sensory systems to compensate for the lack of vision or hearing. This strengthening is due to new connections that are formed to brain cortices that no longer receive sensory input.

<span class="mw-page-title-main">Marie Heurtin</span> French deafblind person

Marie Heurtin was a French deafblind woman. Despite learning no language until the age of ten, Marie was taught to sign, read, and write by the nuns of Notre Dame de Larnay, a convent near Poitiers. As a young adult, Marie helped educate other deafblind girls at the convent, including her younger sister, who was also deafblind.

<span class="mw-page-title-main">Nalaga'at</span> Israeli nonprofit organization

Na Laga'at is a nonprofit organization founded in 2002 by Adina Tal and Eran Gur around the first of its kind in the world ensemble whose actors are all deafblind. The organization established a unique cultural center at the Levantbondet House in the Port of Jaffa in Tel Aviv. The center is a platform for creative arts, which promote equal and open dialogue and lead to social change built on the belief in the human spirit and its ability to reach out and make a change.

<span class="mw-page-title-main">Haben Girma</span> Eritrean-American disability rights advocate

Haben Girma is an American disability rights advocate, and the first deafblind graduate of Harvard Law School.

<span class="mw-page-title-main">Geraldine Lawhorn</span> American deafblind woman, performer, actress and pianist

Geraldine Jerrie Lawhorn was a figure of the American deafblind community, a performer, actress, pianist, then instructor at the Hadley Institute for the Blind and Visually Impaired. At 67 years old, she became the first deafblind African American to earn a college degree in the United States of America.

<i>Haben: The Deafblind Woman Who Conquered Harvard Law</i> Memoir by Haben Girma

Haben: The Deafblind Woman Who Conquered Harvard Law is a memoir by Haben Girma, disability rights advocate and first deafblind graduate of Harvard Law School.

<span class="mw-page-title-main">Morrison Heady</span> American deafblind author

James Morrison Heady was an American deafblind author. Heady published multiple volumes of children's books and poetry and was frequently referred to by the contemporary press as the "Blind Bard of Kentucky". He was one of the first advocates for books for the blind in the United States and he invented several devices to facilitate communication and improve quality of life for deaf and blind people.

Deaf and hard of hearing individuals with additional disabilities are referred to as "Deaf Plus" or "Deaf+". Deaf children with one or more co-occurring disabilities could also be referred to as hearing loss plus additional disabilities or Deafness and Diversity (D.A.D.). About 40–50% of deaf children experience one or more additional disabilities, with learning disabilities, intellectual disabilities, autism spectrum disorder (ASD), and visual impairments being the four most concomitant disabilities. Approximately 7–8% of deaf children have a learning disability. Deaf plus individuals utilize various language modalities to best fit their communication needs.

Deafblind UK is a national charity in the United Kingdom supporting people with sight and hearing loss to live the lives they want. Founded in 1928, Deafblind UK has its headquarters in Peterborough, Cambridgeshire. The charity help people to live with deafblindness by making connections, and building their confidence and independence through a range of services and campaigns. Run by staff and volunteers, the current CEO is Steve Conway, who has been in position since 2018. The current chairman in Robert Nolan.

Anindya Bapin Bhattacharyya is an Indian American technology instructor for the deafblind. He coordinates the National Outreach Technology Development and Training Program at the Helen Keller National Center for DeafBlind Youths and Adults, traveling the country teaching deafblind people to use adaptive technology. Deaf from birth and blind at the age of nine, Bhattacharyya has been an advocate for deafblind individuals in the United States and beyond.

Gerrit van der Mey was a deafblind Dutch mathematician. He helped create software for PTERA and ZEBRA, some of the first computers designed in the Netherlands, as well as creating compilers for later computers. In 1982 he was made a member of the Order of Orange-Nassau at the grade of knight.

Protactile is a language used by deafblind people using tactile channels. Unlike other sign languages, which are heavily reliant on visual information, protactile is oriented towards touch and is practiced on the body. Protactile communication originated out of communications by DeafBlind people in Seattle in 2007 and incorporates signs from American Sign Language. Protactile is an emerging system of communication in the United States, with users relying on shared principles such as contact space, tactile imagery, and reciprocity.

Satoshi Fukushima is a Japanese researcher and advocate for people with disabilities. Blind since age nine and deaf from the age of eighteen, Fukushima was the first deafblind student to earn a degree from a Japanese university when he graduated from Tokyo Metropolitan University in 1987. Fukushima leads the Barrier-Free Laboratory, part of the Research Center for Advanced Science and Technology at the University of Tokyo; the research done by members of the lab's staff focuses on accessibility.

References

  1. ↑ Keller, Helen (1938). Helen Keller's Journal, 1936-1937. Garden City, NY: Doubleday, Doran & Co.
  2. ↑ Kudlick, Catherine; Nielsen, Kim E. (2005). "Review of the Radical Lives of Helen Keller". Journal of American History. 4. 91 (4): 1533. doi:10.2307/3660309. JSTOR   3660309.
  3. 1 2 Dammeyer, Jesper (November 2014). "Deafblindness: a review of the literature". Scandinavian Journal of Public Health. 42 (7): 554–562. doi:10.1177/1403494814544399. ISSN   1651-1905. PMID   25114064. S2CID   23967371.
  4. 1 2 Deaf-Blindness, NCDB: National Center on. "Overview on Deaf-Blindness". nationaldb.org. Retrieved 2018-03-27.
  5. ↑ "NCDB Selected Topics: Deaf-Blindness Overview". Nationaldb.org. Archived from the original on 2012-03-14. Retrieved 2012-03-04.
  6. ↑ Deaf-Blindness, NCDB: National Center on. "Culture and Community". nationaldb.org. Archived from the original on 2018-03-28. Retrieved 2018-03-27.
  7. ↑ "Identity – DeafBlind Connection – Minnesota State Academies". www.msa.state.mn.us. Archived from the original on 2018-03-28. Retrieved 2018-03-27.
  8. 1 2 "Conditions/Syndromes | Deafblind Information". Deafblindness Support Services. Retrieved 2018-03-27.
  9. 1 2 "Causes". nhs.uk. Retrieved 2018-03-27.
  10. 1 2 3 4 5 Heller, Kathryn; Kennedy, Cheryl. Etiologies and Characteristics of Deaf-Blindness (PDF). National Center on Deaf-Blindness.
  11. ↑ "HKNC: Common Causes of Combined Vision and Hearing Loss". www.helenkeller.org. Retrieved 2018-03-27.
  12. ↑ "What is a SSP?". Helen Keller National Center . Retrieved 4 May 2021.
  13. ↑ "Home of KGS Corporation". KGS Corporation.
  14. ↑ "Hyperbraille". Hyperbraille.
  15. ↑ "Home of Tactisplay Corp". Tactisplay Corp.
  16. ↑ "Full Page Braille Display being Launched by Tactisplay Corp". Tactisplay Corp.
  17. ↑ "This video shows operation of the device". YouTube . Archived from the original on 2021-12-12. Retrieved Sep 10, 2020.
  18. ↑ "The Miracle Worker (2000)". imdb.com. Retrieved 2017-12-23.
  19. ↑ Bobrow, Emily (2019-08-02). "Haben Girma Is a Trailblazer for the Deaf and Blind". The Wall Street Journal . Retrieved 2020-11-07.
  20. ↑ Zapke, Angela (2019-11-29). "New Film Features First DeafBlind Actor in a Lead Role" . Retrieved 2021-03-15.
  21. ↑ "Feeling Through 2019 Full Cast and Crew". IMDb . Retrieved 2021-03-15.
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