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Deafblindness is the condition of little or no useful
hearing Hearing, or auditory perception, is the ability to perceive sounds through an organ, such as an ear, by detecting vibrations as periodic changes in the pressure of a surrounding medium. The academic field concerned with hearing is audit ...
and little or no useful sight. Different degrees of
vision loss Visual impairment, also known as vision impairment, is a medical definition primarily measured based on an individual's better eye visual acuity; in the absence of treatment such as correctable eyewear, assistive devices, and medical treatment� ...
and auditory loss occur within each individual. 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. Helen Keller was a well-known example of a deafblind individual. 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 The Helen Keller National Center for Deaf-Blind Youths and Adults (also known as the Helen Keller National Center or HKNC) is a foundation in the United States that provides services for individuals who, like Helen Keller, are both blind and de ...
(also called the Helen Keller National Center or HKNC), with a residential training program in
Sands Point, New York Sands Point is a village located at the tip of the Cow Neck Peninsula in the Town of North Hempstead, in Nassau County, on the North Shore of Long Island, in New York, United States. It is considered part of the Greater Port Washington area, ...
, was established in 1967 by an act of Congress. The deafblind community has its own
culture Culture () is an umbrella term which encompasses the social behavior, institutions, and norms found in human societies, as well as the knowledge, beliefs, arts, laws, customs, capabilities, and habits of the individuals in these groups ...
, comparable to those of the
deaf community Deafness has varying definitions in cultural and medical contexts. In medical contexts, the meaning of deafness is hearing loss that precludes a person from understanding spoken language, an audiological condition. In this context it is written ...
and the
blind community Blind may refer to: * The state of blindness, being unable to see * A window blind, a covering for a window Blind may also refer to: Arts, entertainment, and media Films * ''Blind'' (2007 film), a Dutch drama by Tamar van den Dop * ''Blind' ...
. 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. Some deafblind individuals view their condition as a part of their identity.


Epidemiology

The medical condition of deafblindness occurs in different forms. 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 Modality may refer to: Humanities * Modality (theology), the organization and structure of the church, as distinct from sodality or parachurch organizations * Modality (music), in music, the subject concerning certain diatonic scales * Modaliti ...
deprivation of either vision or hearing, or both. 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. The diagnosis of deafblindness could be medically classified into specific types based on one's symptoms and causes. The two overarching types of deafblindness are congenital and acquired. Congenital deafblindness: the condition of deafblindness from birth * Pregnancy complexities ** Effects of alcohol/drugs *** Fetal alcohol syndrome ** A result of prematurity ** Causes from illness/infection ***
Rubella Rubella, also known as German measles or three-day measles, is an infection caused by the rubella virus. This disease is often mild, with half of people not realizing that they are infected. A rash may start around two weeks after exposure and ...
***
AIDS Human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV), a retrovirus. Following initial infection an individual ma ...
***
Cytomegalovirus ''Cytomegalovirus'' (''CMV'') (from ''cyto-'' 'cell' via Greek - 'container' + 'big, megalo-' + -''virus'' via Latin 'poison') is a genus of viruses in the order '' Herpesvirales'', in the family '' Herpesviridae'', in the subfamily '' Betah ...
*** Congenital syphilis ***
Toxoplasmosis Toxoplasmosis is a parasitic disease caused by '' Toxoplasma gondii'', an apicomplexan. Infections with toxoplasmosis are associated with a variety of neuropsychiatric and behavioral conditions. Occasionally, people may have a few weeks or mont ...
* Genetic conditions (evident from birth) ** Anomalies/syndromes (numerous genetic defects may contribute to one's medical condition of deafblindness, of which some of more well-known syndromes are listed) ***
CHARGE syndrome CHARGE syndrome (formerly known as CHARGE association) is a rare syndrome caused by a genetic disorder. First described in 1979, the acronym "CHARGE" came into use for newborn children with the congenital features of coloboma of the eye, heart ...
***
Down syndrome Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual d ...
***
Marshall syndrome Marshall syndrome is a genetic disorder of the connective tissue which can cause hearing loss. The three most common areas to be affected are the eyes which are uncommonly large, joints and the mouth and facial structures. Marshall syndrome and S ...
*** Congenital rubella syndrome *** Stickler syndrome ***
Trisomy 13 A trisomy is a type of polysomy in which there are three instances of a particular chromosome, instead of the normal two. A trisomy is a type of aneuploidy (an abnormal number of chromosomes). Description and causes Most organisms that reprodu ...
Acquired deafblindness: condition of deafblindness developed later in life * Genetic conditions (evident at a later stage in life) **
Usher syndrome 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 result ...
**
Alport syndrome Alport syndrome is a genetic disorder affecting around 1 in 5,000-10,000 children, characterized by glomerulonephritis, end-stage kidney disease, and hearing loss. Alport syndrome can also affect the eyes, though the changes do not usually affect ...
* Age-related loss of
modality Modality may refer to: Humanities * Modality (theology), the organization and structure of the church, as distinct from sodality or parachurch organizations * Modality (music), in music, the subject concerning certain diatonic scales * Modaliti ...
(vision or auditory or both) * Illness, such as
meningitis Meningitis is acute or chronic inflammation of the protective membranes covering the brain and spinal cord, collectively called the meninges. The most common symptoms are fever, headache, and neck stiffness. Other symptoms include confusion or ...
* Somatic injuries **
Brain damage Neurotrauma, brain damage or brain injury (BI) is the destruction or degeneration of brain cells. Brain injuries occur due to a wide range of internal and external factors. In general, brain damage refers to significant, undiscriminating t ...
/
trauma Trauma most often refers to: *Major trauma, in physical medicine, severe physical injury caused by an external source *Psychological trauma, a type of damage to the psyche that occurs as a result of a severely distressing event *Traumatic inju ...
**
Stroke A stroke is a disease, medical condition in which poor cerebral circulation, blood flow to the brain causes cell death. There are two main types of stroke: brain ischemia, ischemic, due to lack of blood flow, and intracranial hemorrhage, hemorr ...
** Permanent physical damage (relating to vision or hearing)


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 Sign languages (also known as signed languages) are languages that use the visual-manual modality to convey meaning, instead of spoken words. Sign languages are expressed through manual articulation in combination with non-manual markers. Sign ...
(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: * Use of residual hearing (speaking clearly,
hearing aid A hearing aid is a device designed to improve hearing by making sound audible to a person with hearing loss. Hearing aids are classified as medical devices in most countries, and regulated by the respective regulations. Small audio amplifiers s ...
s, or
cochlear implant A cochlear implant (CI) is a surgically implanted neuroprosthesis that provides a person who has moderate-to-profound sensorineural hearing loss with sound perception. With the help of therapy, cochlear implants may allow for improved speech unde ...
s) or sight (signing within a restricted visual field, writing with large print) *
Tactile signing 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. "Tactile signing" refers to the mode or medium, i.e. signing (using some form of sign ...
,
sign language Sign languages (also known as signed languages) are languages that use the visual-manual modality to convey meaning, instead of spoken words. Sign languages are expressed through manual articulation in combination with non-manual markers. Sign ...
, or a manual alphabet such as the American Manual Alphabet or Deaf-blind Alphabet (also known as "two-hand manual") with tactile or visual modifications *
Interpreting Interpreting is a translational activity in which one produces a first and final target-language output on the basis of a one-time exposure to an expression in a source language. The most common two modes of interpreting are simultaneous interp ...
services (such as sign-language interpreters or communication aides) * Communication devices such as Tellatouch or its computerized versions known as the TeleBraille and Screen Braille Communicator. * Tadoma, a tactile modality * Protactile, a tactile language related to
American Sign Language American Sign Language (ASL) is a natural language that serves as the predominant sign language of Deaf communities in the United States of America and most of Anglophone Canada. ASL is a complete and organized visual language that is expre ...
in the Francosign language family 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 Dementia is a disorder which manifests as a set of related symptoms, which usually surfaces when the brain is damaged by injury or disease. The symptoms involve progressive impairments in memory, thinking, and behavior, which negatively affe ...
. 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.


Technology

Braille Braille (Pronounced: ) is a tactile writing system used by people who are visually impaired, including people who are blind, deafblind or who have low vision. It can be read either on embossed paper or by using refreshable braille displ ...
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 In telecommunications, RS-232 or Recommended Standard 232 is a standard originally introduced in 1960 for serial communication transmission of data. It formally defines signals connecting between a ''DTE'' ('' data terminal equipment'') suc ...
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. 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), Hyperbraille, and TACTISPLAY Table/Walk (from Tactisplay Corp.). For example, TACTISPLAY Table can show 120*100 resolution refreshable braille graphics on one page.


In popular culture

The 1959 play '' The Miracle Worker'', and its film adaptation released in
1962 Events January * January 1 – Western Samoa becomes independent from New Zealand. * January 3 – Pope John XXIII excommunicates Fidel Castro for preaching communism. * January 8 – Harmelen train disaster: 93 die in the wor ...
, recounts
Anne Sullivan Anne Sullivan Macy (born as Johanna Mansfield Sullivan; April 14, 1866 – October 20, 1936) was an American teacher best known for being the instructor and lifelong companion of Helen Keller.Herrmann, Dorothy. ''Helen Keller: A Life'', Alfred ...
's efforts to draw Helen Keller from her world of blindness and deafness.
The Who The Who are an English rock band formed in London in 1964. Their classic lineup consisted of lead singer Roger Daltrey, guitarist and singer Pete Townshend, bass guitarist and singer John Entwistle, and drummer Keith Moon. They are considered ...
’s 1969 album '' Tommy'' tells one continuous life story about a deafblind
mute Muteness is a speech disorder in which a person lacks the ability to speak. Mute or the Mute may also refer to: Arts and entertainment Film and television * ''Mute'' (2005 film), a short film by Melissa Joan Hart * ''Mute'' (2018 film), a scien ...
boy named Tommy through songs. The 2005
Bollywood Hindi cinema, popularly known as Bollywood and formerly as Bombay cinema, refers to the film industry based in Mumbai, engaged in production of motion pictures in Hindi language. The popular term Bollywood, is a portmanteau of "Bombay" ...
film ''
Black Black is a color which results from the absence or complete absorption of visible light. It is an achromatic color, without hue, like white and grey. It is often used symbolically or figuratively to represent darkness. Black and white ha ...
'' featured
Rani Mukerji Rani Mukerji (pronounced ; born 21 March 1978) is an Indian actress who works in Hindi films. Noted for her versatility, she is the recipient of multiple accolades, including seven Filmfare Awards. Mukerji has featured in listings of the high ...
as a deafblind character named Michelle McNally. The film ''
Marie's Story ''Marie's Story'' (french: Marie Heurtin) is a 2014 French biographical film directed by Jean-Pierre Améris and written by Améris and Philippe Blasband. It is based on the true story of Marie Heurtin (1885–1921), a girl who was born Deafblindn ...
'' (2014) relates the childhood and education of Marie Heurtin (1885–1921), a deafblind woman.
Haben Girma Haben Girma (born July 29, 1988) is an American disability rights advocate, and the first deafblind graduate of Harvard Law School. Early life and education Girma was born in Oakland, California in 1988 to an Eritrean immigrant family. Her fath ...
, the first deafblind individual to graduate from
Harvard Law School Harvard Law School (Harvard Law or HLS) is the law school of Harvard University, a private research university in Cambridge, Massachusetts. Founded in 1817, it is the oldest continuously operating law school in the United States. Each c ...
, released an autobiography entitled '' Haben: The Deafblind Woman Who Conquered Harvard Law'' in 2019. '' Feeling Through'' is a 2019 American short
drama film In film and television, drama is a category or genre of narrative fiction (or semi-fiction) intended to be more serious than humorous in tone. Drama of this kind is usually qualified with additional terms that specify its particular super- ...
directed by Doug Roland that is 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 The Academy Award for Best Live Action Short Film is an award presented at the annual Academy Awards ceremony. The award has existed, under various names, since 1957. From 1936 until 1956 there were two separate awards, "Best Short Subject, One- ...
.


See also

* Tangible symbol systems * ''Tommy'' (rock opera) *
White cane A white cane is a device used by many people who are visual impairment, blind or visually impaired. A white cane primarily allows its user to scan their surroundings for obstacles or orientation marks, but is also helpful for onlookers in identif ...
(used by blind people to assist them in walking)


References


External links

*
The National Center On Deaf-Blindness
Official informational website on deafblindness in United States.
The Helen Keller National Center for Deaf-Blind Youths and Adults
Helen Keller Services website catering for the deaf-blind and blind communities.
World Federation of the Deafblind
Website for worldwide information concerning deafblindness.
Able Australia
Informational website on deafblindness in Australia.
"Haben Girma Homepage"
About Haben Girma, the first deafblind Harvard Law School graduate.
Deafblind UK
is a national charity in the UK supporting people with sight and hearing loss to live the lives they want.
Sense
is a national charity in England, Wales and Northern Ireland for everyone who is deafblind, there to help people communicate and experience the world. {{Authority control Deaf culture