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 auditory sci ...
and little or no useful
sight
Visual perception is the ability to detect light and use it to form an image of the surrounding Biophysical environment, environment. Photodetection without image formation is classified as ''light sensing''. In most vertebrates, visual percept ...
. Different degrees of
vision loss
Visual or vision impairment (VI or VIP) is the partial or total inability of visual perception. In the absence of treatment such as corrective eyewear, assistive devices, and medical treatment, visual impairment may cause the individual difficul ...
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.
Laura Bridgman
Laura Dewey Lynn Bridgman (December 21, 1829 – May 24, 1889) was the first deaf-blind American child to gain a significant education in the English language, forty-five years before the more famous Helen Keller; Bridgman’s friend Anne Sulliv ...
was the first American deafblind person known to become well educated.
Helen Keller
Helen Adams Keller (June 27, 1880 – June 1, 1968) was an American author, disability rights advocate, political activist and lecturer. Born in West Tuscumbia, Alabama, she lost her sight and her hearing after a bout of illness when ...
was a well-known example of an educated 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 dea ...
(also called the Helen Keller National Center or HKNC), with a residential training program in
Sands Point, New York
Sands Point is a Political subdivisions of New York State#Village, village located at the tip of the Cow Neck Peninsula in the North Hempstead, New York, Town of North Hempstead, in Nassau County, New York, Nassau County, on the North Shore (Long ...
, was established in 1967 by an act of Congress.
The deafblind community has its own
culture
Culture ( ) is a concept that encompasses the social behavior, institutions, and Social norm, norms found in human societies, as well as the knowledge, beliefs, arts, laws, Social norm, customs, capabilities, Attitude (psychology), attitudes ...
, 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 ...
. 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
* Modalit ...
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
Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person who is exposed to alcohol during gestation. FASD affects 1 in 20 Americans, but is highly misdiagnosed and underdiagnosed.
The several forms of the ...
** 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
The HIV, human immunodeficiency virus (HIV) is a retrovirus that attacks the immune system. Without treatment, it can lead to a spectrum of conditions including acquired immunodeficiency syndrome (AIDS). It is a Preventive healthcare, pr ...
***
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 '' Betaherp ...
***
Congenital syphilis
Congenital syphilis is syphilis that occurs when a mother with untreated syphilis passes the infection to her baby during pregnancy or at childbirth, birth. It may present in the fetus, infant, or later. Clinical features vary and differ between ...
***
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 month ...
*
Genetic conditions
A genetic disorder is a health problem caused by one or more abnormalities in the genome. It can be caused by a mutation in a single gene (monogenic) or multiple genes (polygenic) or by a chromosome abnormality. Although polygenic disorders are ...
(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 ...
***
Cochleosaccular degeneration with progressive cataracts
Cochleosaccular degeneration with progressive cataracts, also known as autosomal dominant progressive sensorineural hearing loss and cataracts is a rare genetic disorder characterized by the adult-onset combination of cochleosaccular degeneration ...
***
Down syndrome
***
Marshall syndrome
Marshall syndrome is a genetic disorder of the connective tissue that 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 St ...
***
Congenital rubella syndrome
Congenital rubella syndrome (CRS) occurs when a human fetus is infected with the rubella virus (German measles) via maternal-fetal transmission and develops birth defects. The most common congenital defects affect the ophthalmologic, cardiac, a ...
***
Stickler syndrome
Stickler syndrome (hereditary progressive arthro-ophthalmodystrophy) is a group of rare genetic disorders affecting connective tissue, specifically collagen. Stickler syndrome is a subtype of collagenopathy, types II and XI. Stickler syndrome i ...
***
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 reprod ...
Acquired deafblindness: condition of deafblindness developed later in life
*
Genetic conditions
A genetic disorder is a health problem caused by one or more abnormalities in the genome. It can be caused by a mutation in a single gene (monogenic) or multiple genes (polygenic) or by a chromosome abnormality. Although polygenic disorders are ...
(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 affec ...
* 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
* Modalit ...
(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, intense headache, vomiting and neck stiffness and occasion ...
* Somatic injuries
**
Brain damage
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 trauma-induced damage.
A common ...
/
trauma
**
Stroke
Stroke is a medical condition in which poor cerebral circulation, blood flow to a part of the brain causes cell death. There are two main types of stroke: brain ischemia, ischemic, due to lack of blood flow, and intracranial hemorrhage, hemor ...
** 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 elements, no ...
(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, or
cochlear implant
A cochlear implant (CI) is a surgically implanted Neuroprosthetics, 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 imp ...
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 signe ...
,
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 elements, no ...
, or a manual alphabet such as the
American Manual Alphabet
The American Manual Alphabet (AMA) is a manual alphabet that augments the vocabulary of American Sign Language
American Sign Language (ASL) is a natural language that serves as the predominant sign language of Deaf communities in the United S ...
or
Deaf-blind Alphabet (also known as "two-hand manual") with tactile or visual modifications
*
Interpreting
Interpreting is translation from a spoken or signed language into another language, usually in real time to facilitate live communication. It is distinguished from the translation of a written text, which can be more deliberative and make use o ...
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
Tadoma is a method of communication utilized by Deafblindness, 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 speak ...
, a tactile modality
*
Square script, a method of writing along tactile guidelines
*
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 and most of Anglophone Canadians, Anglophone Canada. ASL is a complete and organized visual language that i ...
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 syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform activities of daily living, everyday activities. This typically invo ...
. 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
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 play ''
The Miracle Worker
''The Miracle Worker'' refers to a broadcast, a play and various other adaptations of Helen Keller's 1903 autobiography '' The Story of My Life''. The first of these works was a 1957 ''Playhouse 90'' broadcast written by William Gibson and sta ...
'' (1959), which was adapted into the film ''
The Miracle Worker
''The Miracle Worker'' refers to a broadcast, a play and various other adaptations of Helen Keller's 1903 autobiography '' The Story of My Life''. The first of these works was a 1957 ''Playhouse 90'' broadcast written by William Gibson and sta ...
'' (1962), 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'', Alfre ...
's efforts to draw Helen Keller from her world of blindness and deafness.
The Who
The Who are an English Rock music, rock band formed in London in 1964. Their classic lineup (1964–1978) consisted of lead vocalist Roger Daltrey, guitarist Pete Townshend, bassist John Entwistle and drummer Keith Moon. Considered one of th ...
’s album ''
Tommy
Tommy may refer to:
People and fictional characters
* Tommy (given name), a list of people and fictional characters
* Tommy Atkins, or just Tommy, a slang term for a common soldier in the British Army
* Tommy Giacomelli (born 1974), Brazilian fo ...
'' (1969) tells one continuous life story about a deafblind
mute boy named Tommy through songs.
The
Bollywood
Hindi cinema, popularly known as Bollywood and formerly as Bombay cinema, is primarily produced in Mumbai. The popular term Bollywood is a portmanteau of "Bombay" (former name of Mumbai) and "Cinema of the United States, Hollywood". The in ...
film ''
Black
Black is a color that results from the absence or complete absorption of visible light. It is an achromatic color, without chroma, like white and grey. It is often used symbolically or figuratively to represent darkness.Eva Heller, ''P ...
'' (2005) featured
Rani Mukerji
Rani Mukerji (; 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 eight Filmfare Awards. Mukerji has featured in listings of the leading and hi ...
as a deafblind character named Michelle McNally.
The film ''
Marie's Story'' (2014) relates the childhood and education of
Marie Heurtin (1885–1921), a deafblind woman.
Haben Girma, the first deafblind individual to graduate from
Harvard Law School
Harvard Law School (HLS) is the law school of Harvard University, a Private university, private research university in Cambridge, Massachusetts. Founded in 1817, Harvard Law School is the oldest law school in continuous operation in the United ...
, released an autobiography entitled ''
Haben: The Deafblind Woman Who Conquered Harvard Law'' (2019).
''
Feeling Through'' (2019) is an 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. The drama of this kind is usually qualified with additional terms that specify its particular ...
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
The Academy Award for Best Live Action Short Film is an award presented at the annual Academy Awards ceremony. The award has existed, under numerous names, since 1957.
From 1936 until 1956 there were two separate awards, ''Best Short Subject, On ...
.
''
The Persistence of Vision'' is a 1978 novella by
John Varley describing the life of a blind-and-deaf community.
See also
*
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 signe ...
*
Tangible symbol systems
*
Land of Silence and Darkness
*
''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-BlindnessOfficial informational website on deafblindness in United States.
The Helen Keller National Center for Deaf-Blind Youths and AdultsHelen Keller Services website catering for the deaf-blind and blind communities.
World Federation of the DeafblindWebsite for worldwide information concerning deafblindness.
Able AustraliaInformational website on deafblindness in Australia.
"Haben Girma Homepage"About Haben Girma, the first deafblind Harvard Law School graduate.
Deafblind UKis a national charity in the UK supporting people with sight and hearing loss to live the lives they want.
Senseis 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