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Deafblind Worlds - Results from Deafblind People

In this section we will explain some of the results from the interviews carried out with Deafblind people. Some interviews were carried out with hands on signing and some with the manual alphabet. Most were direct in BSL.

Here are some facts about the people themselves.

There were 20 Deafblind people who took part. They came from London, Cardiff, Birmingham, Peterborough and Glasgow.

Most people (85%) were deaf before the age of 5 years.

Over 40% had a sight problem by the age of 10 years.

Nine out of ten could not hear even when the sound was very close.

One third could see in front of them.

Three quarters said their preferred language was BSL.

Only one quarter said they were married or had a partner – this is much less than Deaf people or hearing people.
Very few were working and over 40% said they were “unemployed”.

Now we can look at some of the themes we found when people talked about their experiences.

1. Independence

When most people talk about Deafblind people they usually say that they are NOT independent. This presents an image of deafblind people being unable to do much for themselves; constantly relying on others; unable to take control of their own lives.

However when we look at what they told us, we get a different picture … from their perspective.

For example, the jobs around the house could be divided into those that the Deafblind people wanted to do for themselves and those which they were happy to let others do. So they might dress themselves but let someone else cook. They did not consider this to affect their independence.

Another view about independence related to the environment, so people said they were independent in familiar surroundings, like at home or outside in their local area. Sometimes being outside was linked to the time of day – if the light was bad it would be hard to get around.

If a place was not familiar, they might need support but later on they would expect to be able to get around on their own. They considered that they would become independent in future.

The big factor in independence was the possibility to make choices. If the person felt that they could make their own choices, for example, to stay in or to go out walking, then they were independent.

Deafblind people wanted to be independent on their own terms. They wanted to decide when to go out or when to stay in. This might be difficult if they had to book a guide. This meant they could only go out when a guide was available. Some deafblind people felt this meant other people were deciding for them when they could go out. When other people decided for them, it actually took away their independence and that is not what they wanted.

2. Isolation

Often people think that Deafblind people are very isolated. Sometimes we link this to independence or even to the fact of living alone. Deafblind people told us a different story.

We should mention that when we contacted Deafblind people we had to do it through friends or organisations. It is possible that there are other Deafblind people out there who have no contacts with any organisation and we may not know about them. Maybe deafblind people who we don’t know about would have told us a different story.

Most of the Deafblind people we did talk to said that they were not isolated. They mentioned the things they could do and their interests at home. Some people liked being alone.

One person said that she did not feel isolated herself but thought that people who were totally blind might feel isolated.

One person said that they could be isolated when away from home as it was too difficult to go out if it was dark.

Another person reported feeling isolated if there was a group and she could not take part because of not being able to see or communicate. This was a common feeling that people in groups could create this isolation by not including the Deafblind person in the discussion. This was a situation which Deafblind people did not like and would avoid. However deafblind people were happy when people did communicate with them.

3. Future Plan/ Dreams

We talked to deafblind people about their future plans and dreams.

A quarter of the people said they did not have any plans; some said it was difficult to think about the future. They preferred to think about what was happening now. One or two were quite distressed when asked.

Some deafblind people worried about the future.

One person said she was worried about climate change and how deafblind people would be rescued if there was a flood.

Other deafblind people said they worried about what would happen if their vision got worse. They worried about how they would cope.

Maybe this is what some deafblind people find it hard to think about the future – they are worried that it will be bad; they try not to think about it all.

Other people had hopes for the future.

More than one deafblind person explained they hoped there would be an improvement in their vision or that there would be a medical cure to restore their vision.

Deafblind people were happy with being Deaf as this is part of who they were, but if there was a way to make their vision better – that was good.

People also talked about material things they wanted to get in the future – like a new house or a new job. They also talked about their hopes to get married and have children.

These are the same sort of dreams Deaf people or hearing-sighted people might have.

4. Deafblind People Meeting Other Deafblind People

Usually Deaf people know many other Deaf people at the Deaf Club.

But for Deafblind people the situation is different.

One Deafblind person said she met other Deafblind people at a pub but this only happened 3 or 4 times a year.

Sometimes people only had contact with other Deafblind people through e-mail, not face to face.

One person said he had never met another Deafblind person.

However one of the Deafblind people in Scotland said all her friends were Deafblind. This person lives in a city. It is easier because more deafblind people live nearby. It is also easier to arrange for guides so that they can go out.

Part of the Deafblind Worlds project involved setting up groups bringing deafblind people together. We felt it was important that Deafblind people had an opportunity to meet each other, talk and share ideas. We asked deafblind people if they were involved in other groups for deafblind people.

One person said they used to go to a group meeting near where he lived but this was now closed. He said he found it boring. There were often more interpreters and guides (all hearing sighted) than deafblind people.

This is interesting because when we set up groups for the project. One main aim was to find ways for deafblind people to communicate directly with each other, not through interpreters or guides. We found that it was possible for deafblind people to talk together in pairs and then swap pairs so they could share ideas that way. But it was still difficult for deafblind people to share ideas as a whole group. But the good thing was the deafblind people said they enjoyed talking together. We need to find more ways to do this in the future.

Attitudes to Other Deafblind people

Deafblind people talked about others who use other communication, like speech or deafblind manual.

One person said she ‘did not bother’ to try to communicate with people who use Deafblind manual.

One deafblind person used the term ‘hearing-deafblind’. We think she means deafblind people who use speech rather than sign.

Other people talked about Usher people and Deafblind people as being two separate groups.

This might be because of communication methods that people use or because of what causes Deafblindness or because they really believed there was a different identity (this is also true about Deaf views).

Some people prefer to say they are ‘Usher’ rather than ‘Deafblind’.

These differences seem to affect attitudes and we need to investigate more about this.

5. Use of Guides and others

Deafblind people sometimes have to ask for support from other people such as communicator guides or family or friends if they want to do something e.g. to go out to the shops or maybe help to read letters/ make phone calls. There were a lot of interesting examples given, particularly about communication-guides.

Communicator - Guides are used to help the deafblind person move around safely – maybe to go the shops or to a meeting or something. Communicator – Guides also may provide communication support and some interpreting. A number of different experiences about using Communciator Guides came up.

When Deafblind people want to meet with others, they usually have to make plans well in advance. This is because they had to arrange for a communicator - guide to collect them and that might have to be done through an agency or organisation. People were very sensitive to the times when guides were cancelled at the last minute. They could also be upset if the guide was changed for another one whom they did not know so well.

The need for a guide (or another person – family/ friend who will take the guiding role) means it is hard to do things at short notice – to be spontaneous.

In some situations communicator -guides decided where a deafblind person could or could not go. For example a person told us about wanting to go into the city centre, but the communicator-guide did not want to go. So they did not go.

Deafblind organisations had a key role in organising when a communicator- guide was available. The Deafblind person has to fit in with this.

Communicator-Guides only work for a certain length of time. Deafblind people are restricted in what they can do because the guide needs to finish and to go home.

Communicator-guides supporting Deafblind people in a new environment have control over what information they give about the environment and who is there, and the accuracy of this information. Deafblind people may not be able to check if the information is true or if all the information is given. Deafblind people may end up with a false impression of the environment.

Communicator- guides may also “talk” to another hearing person while in a hands-on interaction – this information may not be accessible to the Deafblind person who may just feel an interruption to a conversation.

Deafblind people have to think of the needs of their guides. An example was of a deafblind person who met her deafblind sister unexpectedly in town. A conversation started, but was cut short because the deafblind person was aware the guide was waiting.

Equally a communicator-guide could choose not to give full information to the deafblind person about the environment – so the deafblind person cannot make choices.

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