Cómo influye la rotación de la Tierra en los vientos: Efecto Coriolis35

The differences in communication methods within the Deaf community lead to different expectations from people who consider themselves to be culturally Deafblind as opposed to those who would consider themselves to be deafblind.

Debra, when talking about her position within the Deaf community commented:

“All Deaf, same culture same, happy together”.

However, Gareth expressed:

“I go to [name of support group] member’s day who use sign language. Don’t have much to do with them they keep to themselves in their own little

groups”.

Similarly, Jeff’s experience was that:

“The Deaf community not at all, they are a world to their own”.

Being part of the Deaf community is a strong bond for people who consider

themselves to be culturally Deaf. The findings showed that even after a diagnosis of Usher, capital ‘D’ Deaf¹⁵ people will see themselves as culturally Deaf with its linguistic difference, history, culture and sense of belonging. Debra expressed:

“Few years ago social worker came to help me, what do you want me to put on the form deafblind? No Deaf after that the sight got worse. See myself as part of the Deaf culture with culture, history”.

Debra expressed that shared communication with other people whose first language is BSL⁶ made her feel at ease:

“Communication is easy I feel good, same intelligence, same side.”

However it was not only shared communication that contributed to being part of the Deaf community but also a shared view of humour and shared understanding of culture, linguistics and history:

“Hearing world I can’t pick it up comedy and laughter it means nothing to me I don’t understand but Deaf laugh at same thing” (Debra)

However, Fred’s experience was different:

“I had peripatetic teachers mostly from the deaf school to the hearing teachers just keeping check on you. You feel so different. There was a time when I went back do the deaf school for a week or two because they knew my English and maths not so good. That made me realise there is no way I want to be part of the Deaf community at that time”.

Several participants (Adam, Ben, Mary, Fred, Gareth, Harry, Jeff, Monica, Nora, Quentin) linked being part of the Deaf community with the ability to sign. Harry felt that the ability to sign was dependent on opportunity to use it:

“I did try to learn some BSL a few years ago but with no one to use it with soon forgot it”.

Ben felt that whilst he had been part of the Deaf community this had changed with the progression of Usher:

“Yes I did but now I don’t. Deaf people see things in a different way. Now I can’t see that well. I haven’t seen any of my friends from [name of school] for a very long time”.

When other participants were asked about involvement with the Deaf community they commented:

“Deaf community. Hardly at all. The Deaf Community uses sign language and I can’t use sign language” (Jeff).

“I find Deaf people are locked in their own little world, specially when signing so I didn’t bother going” (Nora)

“When I came to [name of town] yes there was a Deaf group, I went to. But they did all sign language and I am not a signer so I didn’t go much”

(Monica).

These comments again highlight that the use of sign language as a communicative method is linked to being part of the Deaf community. However, not all deaf people with Usher see themselves as part of the Deaf community and not all necessarily use sign language.

Quentin was adamant that he did not consider himself to be part of the Deaf

community expressing, “I don’t even accept the term Deaf Community”, going on to explain:

“Not because I am against the Deaf Community but the only community I live in is the normal UK community”.

Quentin further clarified:

“Because it’s completely against what I want, because I want integration”.

Another finding relating to the uniqueness of cultural Deafness pertained to a personal identity number being given to each Deaf child upon school entry. Having

worked in a sensory environment for many years my understanding was that a child being given a number upon entry to school had been a negative experience as it took away the child’s identity as rather than having a name, the child was now just a number. However, Debra expressed that using her identity number was positive and she still used it to this day:

“Yes still use number now with friends”.

I was surprised by this and asked Debra why she used it:

“Because of speech and lipreading one girls name was [girl’s name] I was [participant’s name] [names are similar], so used numbers instead it made lip reading easier”.

It transpired that at school the friends referred to each other by number and still used these numbers allocated as children at the Deaf club:

“Yes at Deaf club use them. Said friends name by lips but sign number.

Example [participant’s name and number]” (Debra)

When Debra was asked how she felt about using a number to identify herself she responded:

“Looking back likes it because it’s similar to we recognise the voice of someone we have not seen for long time, but for me it’s the number that stays with that person. Yes, can’t recognise voice, so number is added thing to that person, add number who they are I think fantastic”.

Debra continued to further highlight the practical benefits of using a number as a means of identification:

“On clothes had numbers, could not see sometimes took wrong clothes. All remember number and all excited”.

Overall, there were varied experiences and views about belonging to the Deaf community but these were closely linked with communication methods used by individuals. Therefore, the next aspect to be considered is how a change in eyesight can affect relationships with friends and family.

As BSL is a visual form of communication, acquired deterioration of a person’s sight affects their ability to communicate with the people they would usually communicate with. Ben expressed:

“Then after that I went to the [name of school] School in [name of town]

which is a signing school …..I can’t anymore it just doesn’t make sense I can’t see where the hands are supposed to go”.

Although Ben stopped seeing friends, Debra dealt with her situation differently.

Debra had been educated in a school for Deaf children and her first language, BSL, had been used since birth. Debra was culturally Deaf and had experienced a life-long sense of belife-longing from being part of the Deaf community. However when her eyesight started to deteriorate she found that it became harder for her to

communicate with her friends as sign language is a visual language and she relied on her sight to receive information. Debra’s friends had not encountered a person who used sign language to communicate but then was no longer able to see what they were signing. Debra relayed:

“They don’t know how to communicate with me”.

Debra’s friends stopped communicating with her and she became isolated and not wanting to attend the Deaf club, even though she had attended it her whole life.

Here are extracts from her interview, expressing how her deteriorating sight affected her being part of the Deaf community:

“Prob this year friends stopped talking. April last year worked as treasurer in Deaf club really happy and over years moved when more quiet. Didn’t feel part of (Deaf) community, things started to change. Realised not seeing Deaf friends. It’s culture. Life is ok but need friends. …. Didn’t want to see Deaf friends but daughters said should. When went back to Deaf club quiet again.

Coffee morning all Deaf came up and tried to talk, but couldn’t. Realised friends attitude was changing”. […] “Friends came and tried to talk but can’t see them. So they just said hello will come back and talk later but didn’t.

Didn’t get any news. Never came back. Felt not included”. […] “Next time coffee morning daughter went to see what happening and find out what going on with light etc. Daughter watched. Went to person in Deaf club and said have to learn to communicate in different way. Sign language not enough”.

At this stage Debra’s daughter tried to resolve the situation but was not successful, so a charity that supports and campaigns on behalf of Deafblind/deafblind were asked to attend a meeting at the Deaf club to explain what Usher syndrome is and how it affects a person’s communicative method:

“Meeting at [town name] came.[name of worker]and[name of worker]

explained what Usher syndrome is and genetics, history what it means how sight gets worse” (Debra).

Debra explained how she felt:

“Then I talked and explained how I felt, wanted to talk with them, know it’s difficult, need hands on”.

Debra then explains, that although her friends realised there were communicative difficulties, they did not know how to resolve them:

“After that friends realised. They did not realise problem. No one really understood how bad it was”.

The person who attended the meeting from the specialist D/deafblind charity then demonstrated how little vision she had. Debra relayed the following experience:

“Did something very crucial stood at front and showed how little she could see. Asked all to stand up and brought arms in to show how much she could see. All the Deaf stood up. [Name of person from D/deafblind charity] show me with your hands where you can see and they just all copied [name of worker]. They really didn’t understand what she was trying to explain. [Name of worker, colleague of person carrying out demonstration] said they are not understanding. Man named [name of Deaf man] he got it he came out to front and told people off. Said just like sheep, stop, think. Did it again half got it. When the Deaf got it [name of friend] a Deaf friend burst into tears, she had no idea there was just no understanding. Remarkable been Deaf all their lives, they come across people with Usher syndrome and don’t understand totally remarkable”.

This experience highlights how sensory changes affect relationships and that communication is affected by acquired disability. The loss of sight together with already having loss of hearing significantly impacts communication and as a result did impact these relationships. However, where awareness is raised and people are made aware that alternative communication methods can be used such as hands on signing ⁷ or deafblind manual 31¹⁷, these obstacles can be overcome, as was the case in this situation. However, Debra’s experience does highlight the essentiality of family support. This participant was in her 80s and had lost confidence. She had her family to advocate on her behalf and knew which sensory charity to approach for

support, but another person in the same situation may not have had this support network and therefore the outcome may have been different.

Having discussed Deaf culture and its significance in belonging, the next aspect to be presented is whether there is an Usher culture. As previously discussed, there are two groups of people who experience D/deafblindness, those who are culturally Deaf and whose first language is BSL and those who previously had speech and were part of the hearing community. Adam’s experiences identified two Usher cultures, one group who sign, and the other group who are hearing and sight impaired and communicate using speech:

“Yes, there are two Usher culture. The Usher cultures which are more with sign language Usher if you go down to probably made contact [name of deafblind charity worker] or [name of deafblind charity worker]. With the network 2 group in Usher sign language Usher and the HIS-Hearing and Sight Impairment. It’s a little subgroup basically when I became member of [deafblind charity) the Usher was sign language group they had own AGM Xmas parties twice a year and one in [month of year] and one in [month of year] we all get together 2 groups like Manchester united and Manchester city, like East Berlin and West Berlin. I am in both groups”.

The idea of whether there was an Usher culture was not expressed by any other participants in this study. However, being able to sign is linked to being part of the Deaf community, so if the communication method used affects community affiliation, the notion of Usher culture is likely. Next, the impact of shared experiences when living with Usher will be presented.