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Len’s experience highlighted the isolation experienced as a result of Usher.

However, this subtheme shows how people living with Usher are united by shared experiences in which support networks are put in place and friends made:

“The Usher and the [name of group] do try to bring people together, made trip to [name of Palace] and museum arrange event for people to join in”

(Adam).

Some participants wished to be more actively involved in the charity and events organising, whilst others were happy to just be part of the group:

“Now with [deafblind charity], I got in touch with a lovely lady [name of worker] from [deafblind charity]. She said there was this support group. It was actually just a bunch of people with hearing and sight issues and they meet a few times a year. Social activities, you can share your experiences and learn from them, how you cope” (Jeff).

Jeff’s comment highlights the positive role of specialist Deafblind/deafblind charities in the lives of people who experience D/deafblindness. A diagnosis of Usher can lead to isolation (Len) but charities signpost people so they can meet other people with Usher. Meeting up with other people who have Usher can have three-fold benefits; the person feels less alone; they can learn coping mechanisms from shared experiences; and they can learn what support may be available. Jeff expressed that when he was in a situation where he had to decide to accept or decline a particular area of sensory medical intervention, whilst he did his research to decide, he also discussed it with his support group:

“Having association with the support groups you learn things you don’t learn if you just do research”.

Jeff asserted:

“I am a great believer a problem shared is a problem halved. So talking to people who have similar like-minded problems is a great asset”.

However, Jeff also acknowledged that everyone has different personalities and some people may not want to talk about their situation, but he further explained the possible benefits of sharing experiences with like-minded people:

“Now a person may not be comfortable to talk about it at the time. It is about gaining trust and bonding with people. But it opens up the door or the window whatever you want to call it. People may say I don’t have problems with my eyes we all have problems with our eyes. But…what is the specific problem with your eyes? Oh I get this sort of this oh yes….yes then you are talking about it. If you don’t talk about it people worry. I am not suggesting that they do, but people might think whatever it is problem could be life threatening it can bring on stresses to a person so yes. Like-minded people”.

Kate also expressed:

“I am going to [name of town] in 2 weeks’ time. This Friday I am going to [name of town] after that I am going up to[name of town]. I am … I mean yes I am getting busy I enjoy it and it gives me a chance to meet other people”.

Some participants travelled some distances to meet up with other people with Usher (Debra, Fred, Gary, Iris, Jeff, Len) with whom they could share their experiences and learn from others. Additionally where a common experience was being shared age was no barrier:

“Club that was nice a lot of people object to being with older people I was in my 30s late 30s 39 it never bothered me how old somebody is if you have common ground” (Pam).

Pam continued:

“I found that very interesting. Um err it it gave me a lot of information about how to communicate effectively because I am very good my central vision I call it my central vision …I had one tunnel that went one way and another tunnel that goes the other way. A lot of people say about central vision but mine has never been straight ahead that is why I had problems socializing but I learned a lot of things about ways to communicate because some peoples type of hearing loss very different to mine and they need different tones to the voice”.

Ruth expressed how meeting up with other deafblind people had a positive and inspirational impact:

“It wasn’t until I met the deafblind people and they were all doing things and I thought I want to have a go at doing it. If they can do it I’m doing it and I did [sounds proud]. This is where we have got to get them all in to meet other people and to other people you think I ain’t as bad as them. Join them”.

However, whilst friendships and shared experiences were made by meeting face to face and the support of specialist charity support groups, the findings showed that the use of technology was another portal for sharing experiences. The introduction of technology such as Twitter ²⁰, Facebook¹⁸, FaceTime¹⁹ Skype ²¹ iPad²³, IPhone²⁴, Kindles²⁵, speech to text²⁶, video conferencing²⁷ and Email ²² mean a person with Usher can access people with the same condition on a wider scale. The study findings showed extensive engagement with these technologies as a way of

communicating, developing relationships and sharing experiences. Adam shared how Twitter had enabled him to access people living with Usher, all over the world:

“Now we have Face book and Twitter now I am making more network across USA and Canada. Made contact with D/deaf organisations around world”.

Tia shared:

“I use Facebook frequently, amongst other things it’s a great way to communicate with other people with Usher/ RP who I might not have otherwise come across. I use email also but do not have Skype”.

The type of technology chosen by the participant was dependent on their level of sight and hearing loss. Tia highlighted that technology does make a positive difference to living with Usher:

“Technology important for someone with Usher it keeps us in touch with the sighted/ hearing world. For me it allows me to write (touch type) read (screen reader) and braille (braille note) easily in a mainstream environment”.

As identified previously, for some people who experience D/deafblindness, being in touch with the sighted/hearing world may not be their environment of choice;

however as is evidenced by Tia’s comment, it is very important for some people.

Adam shared his experiences of social media:

“Not all bad now have Facebook and Twitter so good. I mean I am on Facebook every night then I am on the group, given a couple of one liner’s and world people are not alone, they have gone through something. One person the other day said had bad day started screaming her head off couldn’t do things around house and then it’s like I say I have been there I have done that then you can have a little laugh. You are not physically there but Facebook…then you try to erase bad feeling and put icing on top. Don’t

worry it’s not end of world. Reassure and encourage be supportive they feel better”.

Another finding that emerged was that some people at the time of a diagnosis of Usher, may not want to know further information or meet like-minded people but technological facilities such as Facebook are readily available 24/7 and can be accessed whenever the person with Usher is ready to do so. This was expressed by Sara:

“When I was first diagnosed I like I say I didn’t want to know anything, I didn’t want to know anyone but there came a point when I did wanna find things out and to be honest the only way I was finding things out was to be honest searching through Facebook for other people with the condition or other people that know about it”.

Facebook enabled Sara to access information at a time that was right for her.

Technological support mechanisms such as this may be useful for people with Usher to find information, obtain support, and facilitate friendships with like-minded people with the same condition, when they are ready and without formal

involvement.

Whilst Len’s experience of support from a D/deafblind specialist organisation was positive, for others, such as Sara approaching this conventional method was not for them. Despite recognising their value, they did not want to be affiliated or involved with organised deafblind charities, but rather opted for social media options such as Facebook:

“I have met a lot of people via Facebook and thought we’ll stay in touch but thought not with a barge pole and they do sort of meet for drinks that sort of stuff but not via [name of deafblind Charity]. These are also people who do

not feel that [name of deafblind charity] or [name of deafblind charity] is for them. [Name of deafblind Charity] are doing something at the moment where they are trying to bring those people back into the fold. I don’t know maybe I have a very old fashioned idea about what [name of deafblind charity] is all about “(Sara).

Debra aged 82 years conveyed experiences of using FaceTime to communicate with her daughter using BSL, “iPad FaceTime fantastic. Technology important, Facebook Email”. One example given of using the iPad was where Debra and her daughter communicated using BSL when her daughter was in a pub and Debra was in her bedroom. Debra said it was sometimes easier to talk on FaceTime because it was, “very well lit, good back light”. It was interesting to note that it was

encouragement from a D/deafblind charity representative who demonstrated the communicative benefits of an iPad for a D/deafblind person that prompted the purchase:

“Bought iPad next day. Very clear. Very clear. Whatever doing will flash up on screen when it rings. Find Skype OK but FaceTime better. Deaf friends have iPad too” (Debra).

However, as previously highlighted technology will vary from person to person depending on their sight and hearing loss, as highlighted by Kate:

“I can’t cope with it. It’s the first kindles that came out they are not suitable for me the other ones iPad you can have kindle going on there and I was shown can adjust font size. The only problem is with the icons running finger across them. I thought I would like to get one. I miss reading, reading books, also with writing class we have to do exercise of writing and reading it out afterwards I did this but of course with my writing I use black ink but couldn’t see to read it. If I had I pad I could see to write on it and also read it back”.

The findings highlighted the resilience, open mindedness and adaptability of people with sensory needs/ requirements when learning new skills to adapt to sensory needs. For example exploring tactile options instead of vision reliance and exploring options available with regard to adjustable sound and vision (Debra and Kate). For some participants, as highlighted by Kate, the deterioration of their sight and vision resulted in them losing out/missing out on something they had previously enjoyed, for example reading books. In some cases although not all, technology can be used to address some of these issues. The use of technology was not affected by age.

Whilst the youngest person who used technology to access a wider network to contact people with Usher was 18 years, the oldest person in this study was 82 years. These experiences highlight that a person is never too old to learn new things, especially if it enables continued contact and communication with family, friends and society in general. Len further commented that he had not needed technology up till now, but as friends started to use forms of technology for example email, this affected contact and communication:

“Up till now I have managed to go along without it. I find I miss out most of my friends are on Email. Sorry I just can’t get into it”.

So to summarise, for some people living with Usher, technology opens up a whole new world and enables them to interact with a wider group of people and access environments that otherwise would have been unattainable. However, technology for some participants was not considered so beneficial and so personal choice is important.

4.4.3 Section summary

This section presented the findings about ‘A sense of belonging’ and explored the subthemes: Interrelationships between communication, culture and community, and friendships and shared experiences. Although as the findings highlighted, some participants did not feel they were part of the Deaf community, others did. For those who did, it is not about segregation or merely a shared communication method, but rather being part of a culturally Deaf community complete with a shared

understanding of culture, linguistics, history, storytelling and humour which contributes to a sense of belonging.

Also, presented was the possibility of whether there is an Usher culture. As there are two groups: the hearing and sight impaired and BSL user groups who

communicate in different ways and participants related different experiences, it is likely that there would be two Usher cultures. However, further research would be needed to explore this possibility.

Also considered was how friendships were established and experiences shared through the use of technology and its impact on the lived experience of people with Usher. However, although technology can have a positive influence for people with Usher, it is not acceptable for everyone so there should not be assumptions about the use of technology.

Three key messages emerged from the findings within the theme ‘A sense of belonging’: Acquired disability affects communication and in turn, relationships;

Deaf/Deafblind culture can contribute to a sense of belonging, and that technology can support a sense of belonging; these will be discussed in chapter 5. The next section presents the final theme ‘Experiences of professional support’.