Booklet 2: Receiving a Diagnosis
This booklet places emphasis on the deafblind persons’ narratives about having a disability without being aware of the diagnosis and about coping with the RP or Usher syndrome diagnosis. The narratives show that the following factors are crucial:
- At what point in life you receive the diagnosis
- Under what circumstances does it come
- What support you receive to move forward
The concept “comprehensibility” appears again in this booklet. If you understand what is going on inside yourself and around you, everyday activities and changes become easier to handle. It will not be easy, but possible.
Clearly, over the last 50 years, both society and the professional attitude towards how to approach a progressive disability has changed. The young deafblind persons have –with few exceptions– received the diagnosis as children or youngsters, at a point in life when they have still not defined their lives. This means that the problems with, for example, seeing in the dark or hearing what is said in a big group, are understandable.
And it also means that their disability at an early age becomes a condition that they learn to relate to and can value when they contemplate the choice of an education for example. In addition, young deafblind persons have the possibility of receiving physical, psychological and social support not least from their parents as well as information about the diagnosis.
The experiences of groups of deafblind persons that are over 35 years of age are far more varied. There is a tendency towards the fact that the older the person interviewed is, the less and more incidental the information has been. We obtain a picture of unclear pieces of information and the experience that both the diagnosis and the consequences of it are discussed without taking the affected person into account. There are exceptions though, where the deafblind persons in this group have also received the information and support they needed.
In all the cases interviewed, the informants that knew other people with Usher when they received their own diagnosis had less difficulties coping with it. Several of the informants that did not know other people with a combined hearing and sight disability say that meeting other deafblind persons on courses and at associations was important for the efforts they made towards accepting the diagnosis.
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