The Invisible World of Deafblindness

Would you be able to imagine the open sea without seeing or hearing the sound of the ocean waves? Will you feel part of a world that you are unable to see or hear? These are some of the daily challenges faced by deafblind people all over the world. In light of that situation, the figure of the interpreter is key to helping them break their silence and guarantee their independence. In Spain, deaf-blindness is recognised by law as a disability. However, the lack of public funding makes this service inaccessible for many.

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Guillem Lisarde

Deafblindness is a combination of visual and hearing impairment (1). It is a disability that combines, and often multiplies, the special needs of deafness and blindness causing difficulties with mobility, access to information and communication.

There are different types and degrees of deafblindness, and these can be caused by a wide variety of factors. Some people have some residual sight and/or hearing (2), while others rely only on touch to communicate. For those who are born with it, their situation and limitations are more complex because they have not been able to develop any language skills, know about their environment or learn by imitation.

People who have suffered from deaf-blindness later in life feel a bigger sense of loss, but most of them find it easier to integrate and begin using different tools of communication.

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The communication barriers that they face can be devastating if they don’t have the services of an interpreter to normalise their working, educational, social and cultural lives. This figure is key to guaranteeing their independence and autonomy. Thanks to interpreters, deaf-blind people can communicate and access services. For many of them, an interpreter is their only link to the outside world. These professionals are very aware of the severe isolation experienced by those who suffer from deaf-blindness. Guiding a deaf-blind person in the street and letting their hand go means leaving them in the middle of a large, white and silent nothingness (3) where they don’t have a voice. This situation can be overwhelming and the patient can start panicking in a matter of seconds. Use of interpreters is a personalised service that in Spain lacks of public support and funding. This makes it expensive and inaccessible for the majority.

Deafblindness in Spain

In Spain, deafblindness is recognised as a specific disability (Law 27/2007 art. 4e). Many expert organisations such as the Spanish Association of Relatives of the Deafblind People (APASCIDE in its acronym in Spanish) criticise the lack of coordination between the education, health and social services departments to address the needs of the service users. For instance, some teachers do not know the magnitude of deafblindness, which often carries other conditions such as immunilogical problems, anxiety or severe breathing difficulties affecting the abilities of learning and focusing for the deafblind students.

There is not even an official census to calculate how many deafblind people there are in the country and how much help is needed. Studies differ on the figures. Some state there are 6,000 people with some degree of deafblindness (ONCE), while others increase this figure to 200,000 (project funded by the European Commission).

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The lack of institutional response and the scarcity of resources allocated to deafblindness, leave the support and awareness efforts to specialised associations, families and the people affected. These agents with their few resources fight for the dignity of the deafblind people. Dolores Romero Chacón APASCIDE’s president, knows the first-time challenges faced by the relatives of the deafblind people: “Firstly, deafblindness needs to be assimilated, understood and accepted… what is frequently known as “duel”; secondly, when these relatives discovered the lack of information about this disability, the specific resources that are needed and the lack of their availability in Spain, they become depressed and they might be at the risk of being hopeless”. 

Below are some of the Spanish associations fighting to get more resources and draw attention to the needs of people suffering from deaf-blindness.

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ASOCIDE

Asociación de Sordociegos de España (Spanish Deaf-blind People Association) – ASOCIDE is a non-profit organization run by deafblind people since 1993. Their aim is finding the best way for their integration in society. After a long evolution, now the organisation is hoping to have regional delegations.

They offer advice and guidance to adult deaf-blind people, offer a service of interpreting and collaborate in the training of professionals.

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They receive financial support for their projects and activities from the ONCE Foundation. This support is key to undertake their programmes and activities. In addition, ONCE promotes programmes in education and employment through  their foundation for the Deafblind People (FOAPS).

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APASCIDE

Asociación Española de Familias de Personas con Sordoceguera (Spanish Association of Deaf-blind People Families).

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Sense Path
APASCIDE organise leisure activities and offer customer, advisory and counselling services to the families. They also run the Centro Santa Ángela de la Cruz, the only residential centre in Spain specialised for deaf-blind people. They have 25 permanent rooms and 21 spaces for day care.

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Cooking Workshop
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FESOCE

Federación Española de Sordoceguera (the Spanish Federation of Deaf-blind people) – FESOCE is a non-profit organisation whose aim is to ensure the welfare and equal opportunities for deaf-blind people and their families.

They carry out research and publicity campaigns, offer consulting services and a media presence. They also provide legal and administration services for their member institutions in order to help them to achieve their objectives.

Member institutions:

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Use of English for Spanish Speakers

(1) Hearing impairment.

  • Comment: Note that in English that hearing impairment is partial deafness do not use it for a profound deaf.

(2) Residual sight/ hearing

  • Comment: This is a quite literal translation of “vista residual” although is more common in Spanish to talk about “restos visuales”.

(3) Nothingness

  • Comment: Don’t confuse the use of nothingness with nothing. Like in Spanish the two meanings imply emptiness or absence “nada” o “vacío/inexistencia”.

 


 

Have worked in this article

Author:Guillem Lisarde (in Spanish).

Translation: Noelia Martinez (Not Just Words) and Martin Forrest.

Proofreading: Martin Forrest.

Use of English: Jordi Albacete.

Autor: Guillem Lisarde

Recién graduado en periodismo, con planes de estudiar un máster. De momento mi vida y mis intereses se resumen en esta lluvia de ideas: Erasmus, viajes, aventura, mundo audiovisual, medio ambiente, teatro, optimismo, música, minorías, culturas, lenguas, personas, empatía, alegría, paella... Supongo que el futuro pondrá las cosas en su sitio, de momento, improviso… ¿Alguna sugerencia? Contáctame por Twitter en @guilise

A recent Journalism graduate, thinking of doing a masters degree. In a nutshell, my life and interests are: Erasmus, travelling, adventure, audio-visuals, the environment, theatre, positive thinking, music, minorities, culture, languages, people, empathy, happiness, paella… I guess things will fall into place in the future. In the meantime, I just play by ear… Any suggestions? Follow me on Twitter @guilise

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