We are publishing the full Statement on Deafblindness from the European Federation of the Deafblind, which also responded to the programme broadcast on RTV SLO on the 29th of June, 2024, entitled “Let’s Listen to the Silence: A New Law to Help the Deafblind,” produced by the Slovenian Association of the Deaf and Hard of Hearing.
The statement on deafblindness provides a broader explanation of the condition, including its prevalence.
The public response from the Deafblind Association of Slovenia, DLAN, to this statement was published on the 3rd of July, 2024.
The European Deafblindness Union (EDbU) statement on deafblindness is available in full, both in the original language and in translation.
Statement on Deafblindness
On behalf of the European Deafblind Union (EDbU) we suggest for every European Country to ensure for all deafblind people to have the right for social integration and inclusion.
Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.
Main implications: To varying degrees, deafblindness limits activities and restricts full participation in society. It affects social life, communication, access to information, orientation and mobility, the ability to move around freely and safely. To help compensate for the combined vision and hearing impairment, especially the tactile sense becomes important.
On this basis, deafblindness is not only a state of total deafness and total blindness, but the simultaneous presence of a disability of both senses, which significantly affects the individual’s daily life, limiting his/her independence in any area of life, even if one or both senses are residually impaired.
Accordingly, a person is considered deafblind if:
– hard of hearing and partially sighted, or
– hard of hearing and blind, or
– deaf and partially sighted, or
– deaf and blind, or
– deafblind combined with other disabilities.
The severity of the combined vision and hearing impairment depends on:
• the time of on-set, especially in relation to communication development and language acquisition
• the degree and nature of the vision and hearing impairments
• whether it is congenital or acquired
• whether it is combined with other impairments
• whether it is stable or progressive.
As far as the medical criterion of impairment is concerned, the two sensory impairments should be considered together, as together they adversely affect the individual’s daily life. For example:
– People who are hard of hearing with a visual impairment do not have the same abilities to orientation and move around as people who are only hearing impaired.
– Deaf people who lost their sight or have minimal residual vision can no longer communicate and move about independently in the same way as deaf people who are sighted.
– Compared to a blind person, deafblind persons are at a much greater disadvantage because they cannot rely fully on hearing to get around.
In other words, deafblindness is a much more severe type of disability than for a person who is only hearing impaired or only visually impaired. Therefore, a 50% of hearing impairment is realistic for a deafblind person with a visual impairment.
The rate of deafblind people in the population can only be estimated, even though there have been several international studies or surveys and statistical analyses. A significant number of deafblind people live isolated in their families or institutions, often with no information about them until someone in their environment reports it to the national deafblind organisation, asking for their help. On the other hand, regardless of the definition of deafblindness, many deafblind people do not have a deafblind identity and therefore do not seek out services for them or the organisation that represents them.
Children can suffer irreversible damage to their vision and hearing from complications around birth (e.g. in incubator), and often together with intellectual and/or locomotor impairments (so called “congenital deafblindness”).
However, deafblindness is usually a progressive condition, called ‘acquired deafblindness’, which means that in addition to one existing sensory impairment, a person usually develops an impairment of another sensory impairment as they age, due to illness or accident. In addition, an increasing proportion of people over the age of 65 develop varying degrees of damage to both senses.
For the social inclusion of people who are deafblind, deafblindness must be recognised as a separate disability in legislation and public funding must be provided to support the following services for deafblind people:
– communication assistance, interpreting and guide: deafblind people need specially trained deafblind interpreters (interpreters-guides) who can help them in moving around and in communication in special communication methods used by the deafblind people, not only in official administration, medical care, education, but also in social life including for example masses, social events and cultural programmes, family gatherings, meetings, in order to enable deafblind people to participate as much as possible in society and in the family
– development: deafblind people need development to learn new communication methods, techniques and tools for moving around and orientation, IT tools (computers and smart devices) and assistive devices, according to their changing or altered vision and hearing conditions.
The main objective of the European Deafblind Union is to have a separate deafblind organisation in each European country to represent the interests of deafblind people as unique disability. The national deafblind organisations have the professional knowledge and experience necessary to provide decision-makers and legislators with an appropriate and high quality basis for the professional representation of deafblind people and to represent the interests of the target group accordingly.
Organisations representing other disability groups, such as the Association of the Deaf or the Association of the Blind, do not have sufficient expertise in the field of deafblindness and therefore their professional positions are not well founded.
Therefore, the EDbU expects state governments and policy-making bodies to take into account only the professional opinion and experience of the national deafblind organisation on deafblindness issues.
26th of August, 2024
Izjava o gluhoslepoti
V imenu Evropske zveze gluhoslepih (EDbU) predlagamo vsaki evropski državi, da zagotovi vsem osebam z gluhoslepoto pravico do socialne integracije in vključevanja.
Gluhoslepota je hkratna okvara sluha in vida, ki je tako resna, da se oslabljena čutila težko nadomeščajo med seboj. Zato je gluhoslepota samostojna, specifična oviranost/invalidnost.
Glavne posledice: Gluhoslepota v različnih stopnjah omejuje dejavnosti in onemogoča polno sodelovanje v družbi. Vpliva na družbeno življenje, komunikacijo, dostop do informacij, orientacijo in mobilnost ter možnost svobodnega in varnega gibanja. Za pomoč pri kompenzaciji hkratne okvare vida in sluha postane pomemben dotik/taktilni čut.
Na podlagi tega gluhoslepota ni le stanje popolne gluhote in popolne slepote, temveč hkratna prisotnost okvare obeh čutil bistveno vpliva na posameznikovo vsakdanje življenje in omejuje njegovo neodvisnost na kateremkoli področju življenja, tudi če sta eno ali obe čutili delno okvarjeni.
V skladu s tem se oseba šteje za gluhoslepo, če je:
– naglušna in slabovidna ali
– naglušna in slepa ali
– gluha in slabovidna ali
– gluha in slepa ali
– gluhoslepa v kombinaciji z drugimi oviranostmi/invalidnostmi.
Resnost hkratne okvare vida in sluha je odvisna od:
• časa nastanka, še posebej v povezavi z razvojem sporazumevanja in usvojitvijo jezika,
• stopnje in narave okvare vida in sluha,
• tega, ali je prirojena ali pridobljena,
• tega, ali so ji pridružene druge okvare,
• tega, ali je stabilna ali progresivna.
Kar zadeva medicinsko merilo okvare, je treba obe senzorični okvari obravnavati skupaj, saj skupaj negativno vplivata na posameznikovo vsakdanje življenje. Na primer:
• Naglušne osebe z okvaro vida nimajo enakih sposobnosti za orientacijo in gibanje kot osebe, ki imajo samo okvaro sluha.
• Gluhe osebe, ki so izgubile vid ali imajo minimalen ostanek vida, se ne morejo več samostojno sporazumevati in premikati na enak način kot gluhe osebe, ki vidijo.
• V primerjavi s slepo osebo so osebe z gluhoslepoto v veliko slabšem položaju, ker se pri gibanju ne morejo povsem zanesti na sluh.
Z drugimi besedami, gluhoslepota je veliko težja invalidnost kot je invalidnost pri osebi, ki ima samo okvaro sluha ali samo okvaro vida. Zato je pri osebi z gluhoslepoto z okvaro vida, realna 50-odstotna okvara sluha.
Kolikšen je delež oseb z gluhoslepoto v populaciji je mogoče le oceniti, čeprav je bilo izvedenih več mednarodnih študij ali raziskav in statističnih analiz. Veliko število oseb z gluhoslepoto živi izolirano v svojih družinah ali ustanovah, pogosto so brez informacij, dokler nekdo v njihovem okolju o tem ne obvesti nacionalne organizacije gluhoslepih in jih prosi za pomoč. Po drugi strani pa ne glede na definicijo gluhoslepote, veliko oseb z gluhoslepoto nima identitete gluhoslepih in zato ne iščejo storitev za gluhoslepe ali organizacije, ki zastopajo zastopajo gluhoslepe.
Otroci lahko utrpijo nepopravljive poškodbe vida in sluha, zaradi zapletov ob rojstvu (npr. v inkubatorju), pogosto skupaj z intelektualno in/ali gibalno oviranostjo (tako imenovana „prirojena gluhoslepota“).
Vendar je gluhoslepota običajno progresivno stanje, imenovano „pridobljena gluhoslepota“, kar pomeni, da se poleg ene obstoječe senzorne okvare pri osebi s staranjem, zaradi bolezni ali nesreče, običajno razvije še okvara druge senzorne okvare. Poleg tega se pri vse večjem deležu oseb, starejših od 65 let, razvijejo različne stopnje poškodb obeh čutil.
Za socialno vključenost oseb z gluhoslepoto je treba gluhoslepoto v zakonodaji priznati kot posebno invalidnost in zagotoviti javno financiranje za podporo naslednjih storitev za osebe z gluhoslepoto:
– komunikacijska pomoč, tolmačenje in spremljanje: osebe z gluhoslepoto potrebujejo posebej usposobljene tolmače za gluhoslepe (tolmače-spremljevalce), ki jim lahko pomagajo pri gibanju in komunikaciji v posebnih načinih sporazumevanja, ki jih uporabljajo osebe z gluhoslepoto, ne le v uradni upravi, zdravstvu, izobraževanju, temveč tudi v družbenem življenju, na primer pri mašah, družabnih dogodkih in kulturnih programih, družinskih srečanjih, sestankih, da bi osebam z gluhoslepoto omogočili čim večje sodelovanje v družbi in v družini.
– razvoj: osebe z gluhoslepoto potrebujejo osebni razvoj za učenje novih načinov sporazumevanja, tehnik in orodij za gibanje in orientacijo, orodij IKT (računalnikov in pametnih naprav) ter pripomočkov glede na spreminjajoče se ali spremenjene vidne in slušne pogoje.
Glavni cilj Evropske zveze gluhoslepih je, da bi v vsaki evropski državi obstajala ločena organizacija gluhoslepih, ki bi zastopala interese gluhoslepih kot posebne oviranosti/invalidnosti. Nacionalne organizacije gluhoslepih imajo strokovno znanje in izkušnje, ki so potrebne, da odločevalcem in zakonodajalcem zagotovijo ustrezno in kakovostno podlago za strokovno zastopanje ljudi z gluhoslepoto in ustrezno zastopanje interesov ciljne skupine.
Organizacije, ki zastopajo druge skupine invalidov, kot sta Zveza društev gluhih ali Zveza društev slepih, nimajo zadostnega strokovnega znanja na področju gluhoslepote, zato njihova strokovna stališča niso dobro utemeljena.
Zato EDbU pričakuje, da bodo vlada in državni organi za oblikovanje politike na področju gluhoslepote, upoštevali le strokovno mnenje in izkušnje nacionalne organizacije gluhoslepih.
26. avgust 2024
Tamás Gangl
Podpredsednik
Evropska zveza gluhoslepih
Ne gre za uraden prevod, temveč za prevod zagotovljen s strani Združenja gluhoslepih Slovenije DLAN.
