Deafblindness, Basic principles

10 Feb 2016
The idea behind this booklet was conceived in a car on a bumpy road in Malawi, where Ms Lilian Mariga first showed me a copy of a teachers' manual for supporting children with disabilities. The manual was comprehensive and detailed, and well used. An idea started to grow; Ms Mariga's manual should be adapted to provide information on deafblindness. And – it should be accessible for not only teachers, but for parents and for all persons who interact with persons with deafblindness.

Knowing that many of the persons we wanted to reach With information on deafblindness were illiterate, a more radical  approach was needed. A whole new manual had to be developed, where the information should be communicated through illustrations primarily.developed, where the information should be communicated through illustrations primarily.

Deafblindness is a distinct, low incidence disability. Within this small group of persons with deafblindness, there are  great variations between each individual. Some persons with deafblindness have some usable vision and/or hearing.  Some persons with deafblindness have additional physical,medical and/or cognitive challenges. Some persons have  deafblindness from when they are born and before language aquisition; congenital deafblindness. Some persons  develop deafblindness after language acquisition; acquired deafblindness. All this results in huge individual differences between persons with deafblindness.

The booklet takes use of the Nordic definition of deafblindness: deafblindness is a combined vision and  hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is  required to facilitate specific services, environmental alterations and/or technology.The idea of trying to simplify the complicated field of deafblindness into illustrations, was considered to be almost impossible, and feared to result in a manual that will not fit all, only a few, and possibly even be harmful to some.

To make the challenge even bigger: We are quite certain that this booklet will be copied and distributed outside our control. Hence, the  illustrations had to be developed to be copy-friendly, and to be able to stand alone, without any further information other than the short texts that follow some of the illustrations.The booklet is the result of a desire of making very easy and accessible, something which is very complicated. It is meant to provide an overview of the basic principles on how to interact with persons With deafblindness. The primary target groups for the booklet are parents, families and other persons who are close to persons with deafblindness.

However, we hope that the booklet can be an inspiration for teachers and other professionals, and be used as a starting point to provide information about deafblindness, and to discuss how to best interact with persons with deafblindness.  If the booklet is successful, it will be developed further in the years to come, With more information and more details.

Oslo – October 2015 – Kenneth Verngaard, the Signo Foundation

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