Deafblind Worlds was set up in 2004 with support from the Big Lottery. The main aim was to ask Deafblind people themselves about their experiences and about their everyday lives.
First we had to decide what we mean Deafblind. For this project, we decided to focus on those people who were first Deaf and who became blind.
The people involved in our project are those who grew up with other Deaf people but who either had a problem with their eyes which means what they can see is gradually getting less and less, or Deaf people who suddenly had a problem in seeing. Maybe they had an accident or a serious illness which meant their sight was totally lost.
The people we met had different types of problems with their sight. Some people could still see near, but not see far away. Other people could see immediately in front of them but not to the side. Other people could not see very much at all.
We expected all Deafblind people involved in the project to be able to use BSL or the Deafblind manual alphabet or hands on signing.
Second, we had to try to find Deafblind people. We thought we could do it in four main cities but this proved to be too difficult because it was very hard to find out where people lived and then we had problems in trying to contact them. Deafblind people use different communication systems. For example, some read Braille, some read large print, some read e-mail – everyone is different. The difficulty was knowing which was the right communication system for each person. Some deafblind people cannot access any of these systems. So we had to use a second person who would take the message. This was not easy as this person might not have the full information.
Another problem was that even if deafblind people were given information about the project, it was still hard since Deafblind people had never had the opportunity to explain about themselves and some did not know what we meant by research.
In the end we interviewed 21 Deafblind people in Scotland, England and Wales. We tried to have a balance of male and female and from different age groups. We also wanted people from different ethnic groups. Some people used hands-on signing others the deafblind manual alphabet and others were able to understand BSL in a visual frame.
We also wanted to compare Deaf people’s experiences so we contacted Deaf people in all the same places where there were Deafblind. We interviewed 38 in total as we wanted to try to match Deaf people to the Deafblind and knew that only some people would be a good match.
All of the interviews were videorecorded and then we transcribed them into English so that we could analyse them by computer. This took a very long time – about 10 hours for each interview!
Once we had the text in the computer we could take out the special themes that people talked about and it is these themes which we will explain in the results part.
We also went back to people and asked them to come to a group meeting. We held group meetings in four places. This was the first time that many Deafblind people had taken part in a group workshop like this and so it was very interesting to work without communicator guides or other people. We explained the results and asked them to think about what we said and what they thought. Again we recorded what they said and have done some analysis on this.
You will see the results where we are comparing Deaf and Deafblind views.
There are many interesting findings about Deafblind experience and we will write about it and provide the information to as many people as possible so that what Deafblind people want is better understood by the Deaf community and by people in general.
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