DeafBlind Worlds: Final Report on a Project Funded by the Big Lottery

To date, there has been no clear description of the experiences of Deafblind people. Deafblind Words was set up to meet with Deafblind people to talk about their lives and experiences. The aims were to a) examine the experience of being Deafblind b) determine if this was similar to Deaf people’s experience c) discover if Deaf and Deafblind people could work together In Deafblind Worlds, we adopted the perspective of the Deafblind person. The researchers were Deafblind. Their analysis shaped the questions and the methodology. Deafblind people were in the Steering group. Deaf blind people were re-visited and in groups, discussed the findings. The project was carried out wholly in British Sign Language (BSL) or the Deafblind variants, such as hands-on signing or with the use of Deafblind manual alphabet. We interviewed 21 Deafblind people and 38 Deaf people. They lived in Scotland, England and Wales. They were aged from 21 to 66 years with a range in gender, employment and marital status. Researchers made visits to each person individually to explain the project. Individual interviews then followed. Group meetings were set up for Deafblind and for Deaf people. Finally, several group meetings were set up with Deafblind and Deaf people together. The Results: Deafblind People There were fifteen females and six males. Forty-one percent were aged 21 to 35 years. Around 85% had a hearing loss since before the age of five years. Forty-one percent had acquired a sight problem by the age of ten years. Around 90% could not hear at close quarters; however, over a third were able to see at a distance of a metre in front. Most (77%) used BSL by preference but rather less were married or living with a partner (only 27%) compared to the usual for Deaf people of (over 50%). We arranged their replies in interview according to certain topics which emerged repeatedly. Independence – Deafblind people feel independent in different ways from the usual way that carers and service providers think about it. They say for example: ‘Independence is being able to take care of our own personal needs or independence might mean being able to choose when to go out or not’ Deafblind people think about these choices in terms of their own challenges, not in comparison to what society thinks of as normal. Isolation - Most people think Deafblind people are isolated. But some Deafblind people said: ‘we never felt isolated or we only feel isolated because we cannot go out when we want or we could feel isolated even when we are surrounded by other people.’ The reports of the experience of a Deafblind person in a group were unexpected. Deafblind people may be unaware of who is in the group and what they are doing. We found that Deafblind people attending Deafblind meetings often had no idea how many other Deafblind people were there. We found, sometimes, that Deafblind people were communicating through a guide/interpreter to another guide /interpreter to a second Deafblind person … instead of directly. Future Plans/ Dreams: Our results show that Deafblind people may find it hard to think about the future but much easier to think about what is happening now. Deafblind people may worry about losing their eyesight in the future. Some Deafblind people became upset when asked about the future – they had concern for their personal well-being and the real frustration of not being sure that they can control their own lives. Meeting other Deafblind People – we found that some Deafblind people have never met another Deafblind person while some Deafblind people only have friends who are also Deafblind. Most Deafblind people do not have experience of communicating in a group. Meeting Deaf People – we discovered that many people continued their involvement with the Deaf Community but other people said they did not go to the Deaf club. This was because they felt ‘it was boring, Deaf people ignored them and Deaf people did not know how to communicate’. The Deaf community was not seen as a friendly environment for many people. Feelings of Insecurity/ Loss of Control - Deafblind people can lose confidence and feel insecure as a result of loss of control of the situation. ‘they feel apprehensive when arriving in a new environment and they are constantly aware of dangers e.g. worrying about tripping up and they are shocked when other people bump into them’ These aspects are of great significance not purely in a physical sense but in terms of personal self-management. Reliance on Others – we found that using guides is the means for Deafblind people to go out of their home. This can mean that they feel independent. Other people said they HAD to use a guide and HAD to accept this, but this meant that guides were not seen as a positive part of Deafblind person’s life and ... booking of professional services is done through organisations. Deafblind people feel restricted by this as they cannot have a guide when they want. Sometimes the guide they were expecting was changed at the last minute. Sometimes it meant they could not stay out as long as they wanted. The provision of guides may be seen as ‘solving a problem’ of providing a way Deafblind people can get out of their homes with someone who can facilitate communication – the Deafblind person is therefore seen by service providers as becoming more ‘independent’. Yet through this process, Deafblind people remain dependent on organisations and the Deafblind person’s control of his/her own life has been reduced. Deaf people’s responses A total of 38 Deaf participants were interviewed. Of these, 36 transcripts were used in our analysis. There were 20 men and 55% were married or living with a partner. Seventy-six percent were white – a low figure which was partly due to trying to find more people in ethnic groups. The average age was 42 years. Almost all (95%) could not hear speech. Over 80% said that they preferred to sign and to be signed to. Only 45% were in work. In the Deafblind group only 18% were working. Most of the group claimed to be in contact with other Deaf people and with the Deaf community at least weekly. Deaf people said they did not know how to communicate with Deafblind people. It was as if Deafblind people were “foreigners. Deaf people valued ease of communication and said Deafblind people were slower and different. Deaf participants thought Deafblind people were ‘hard work’, requiring patience, and forcing on them a responsibility that they were reluctant to accept. Although we believed that Deaf people and Deafblind people were similar we now think that it would be difficult to bring them together. What Deafblind People did when in contact We brought together Deafblind people who did not know each other and allowed them to communicate directly. For some this was a very new experience but one which became very important. We consider this is a major area to develop, but it requires the restructuring of meetings and information giving. Conclusions Although there is much in common in Deaf and Deafblind experience, there is a gap in the perception of the two groups with respect to each other. Deaf people at present see Deafblind people as different and time consuming. Deafblind people do not form groups. While somewhat simplistic, it is however, intensely significant. Many of the Deafblind people we met, had never been able to discuss their experiences with another Deafblind person. Even those who attended meetings where there were other Deafblind people were seldom able to carry out direct conversations with other Deafblind people. The limitations which are inadvertently created by the provision of guides ensures that Deafblind people have hitherto been unable to form social groups. There are significant obstacles to conducting Deafblind-only meetings such as how to overcome the limitation of pair-wise interaction, that is Deafblind people can only talk to one person at a time.