A DeafBlind World
It seems that Deafblind people have to manage problems in the attitude of hearing people and also the attitudes of Deaf people.
Hearing people’s view of Deafblind people as doubly-disabled, isolated and in need of care, is usually rejected by Deafblind people themselves. In their own view they can manage well in their own environment and the most important aspect is that they want to be independent on their own terms. It will take some further work for us to really find out more about Deafblind lives and what they could be if people paid attention to them more often.
The difficulties of reaching Deafblind people directly and the way we just provide guides, leads to special issues with those guides.
Deafblind experiences with Guides
We need to think more about the relationship between communicator- guides and how they work with deafblind people. There are some important questions to think about.
Sometimes communicator-guides are the only people that deafblind people meet all week … who can communicate with them. When the communicator guides arrive, the Deafblind people are very happy, and can go out, relax and have a laugh, and catch up with news. At this time, is the communicator-guide a professional or a friend? – probably both – but this may lead to some conflicts.
Although communicator guides might be paid only to support the deafblind person, they still have an influence on what happens. A deafblind person may want to go shopping, and checks the guide is happy with this. They are not, so the shopping trip does not happen.
How much control do communicator-guides have?
There are many issues surrounding support services to Deafblind people and how these can become disabling for the Deafblind person. There is much more to be understood about this relationship so that it can be added to the training programme for guides.
Views on Deaf people
There appears to be a gulf between Deafblind people and Deaf people and both groups perceive it.
Deafblind people think Deaf people are not welcoming and do not adjust nor adapt to their needs. Deaf people consider those needs to be too much. To involve Deafblind people they have to slow down, have to interpret and to change the lighting, seating etc. Some Deaf people think this is too much when they really just want to relax with their own Deaf friends. This is odd since the same Deaf people feel they are let down by hearing people (who have the same reasons).
Deaf people feel they need to be specially trained about Deafblindness and Deafblind people tend to agree.
However, we believe that until they are able to be together much more, then there will not be an understanding and there may not be a resolution to the problem.
We aim to carry out more detailed analysis on what people have said and what the groups of Deafblind people and groups of Deaf people said when they were together.
We think it is very important that the views of Deafblind people are presented to the Deaf community – that is why we are making the video/DVD – and we know it is very important that hearing people are able to understand more about.
We will also have a Braille version of the report so that people with serious sight problems can also have access.
The work is not finished. We believe that it s very important that Deafblind people have a chance to meet together and to properly share and exchange their views – with each other and directly, without intermediaries and we are trying to find ways to achieve this. Just as Deaf people want to meet in pubs and clubs, so it would be a great help for Deafblind people to have a meting.
We think it is important to be sensitive to the aspirations of Deafblind people and we need to find ways to support them in what they want – not to provide services which we think they need.
This report will be a first step.
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