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Interpreting for Older People with Acquired Deafblindness
Sarah Greaves (UK)
Sarah Greaves has worked at Sense as Specialist Development Worker for two years. Her role involves developing service responses for people with a dual sensory impairment living in the community or supported environments. She is a qualified social worker and previously worked at the National Centre for Mental Health and Deafness and as a communication support worker with deaf students in colleges. Sarah is currently working for a PhD doing research on dual sensory impairment in older age.
Is anybody there?
Deafblind services have been developing with concerted support and commitment in Derbyshire in the UK since September 1997. County and city council social services departments, the health authority and Sense have joint funded a project worker and pilot services alongside input from several other local voluntary organisations. This project was initially aimed at identifying the individuals, their needs, and appropriate support and services for the group who experienced an acquired dual sensory impairment and who were over 60 years of age. One of the elements of service provision currently not well developed or accessed in this area, especially by older people, is that of interpreting. Part of the work of this project explored some of the reasons behind this and ways of moving forward.
“It became clear that, for many Deaf people, to have to rely on a friend, neighbour or relative to help out with interpreting support when required was an anathema; it implied that deaf people were incapable of taking care of their own affairs and because this type of interpreting assistance was provided on a voluntary basis, Deaf consumers felt unable to complain if dissatisfied with the service provided. In addition there was no guarantee that such an individual was performing the task adequately, far less than the ‘interpreter’ was aware of the rights of the client to expect impartiality and confidentiality”.
(British Deaf Association project 1977)
This quote was said 20 years ago in relation to Deaf people, but it struck such a chord, echoing the sentiments of many of the deafblind people currently receiving contact. It is shocking to consider we could be so far behind that such a dated statement so accurately describes the experience of so many deafblind people.
Information Starvation
In order to put the issue of access to information and communication into some sort of perspective, the reading maximum, according to Kavanagh and Mattingley (1972), is estimated at 2,000 word per minute and the listening maximum is 400 words per minute. When we then look at the words per minute that a deafblind person can access, 60 is about the maximum in deafblind manual, less with block alphabet, the speed being restricted by interpreter production and deafblind person reception. In reality, most of the older deafblind people receive approximately 12–14 words per minute in various formats. This speed being restricted by their competence in using an alternative reception channel, a more symbolic communication system or repetition and rephrasing.
As the information generally available becomes more extensive and rich, the divide between the life experience of those with easy access and those dependent upon interpreted information will increase unless technology and techniques develop alongside. The rest of this paper will discuss the issues pertinent to older people accessing interpreters and give some recommendations for managing the debilitating impact on the lives of older people of such limited access to information and communication.
Older People
There are various factors experienced by older people which reduce their personal capacity to manage a dual sensory impairment:
having fewer people around for support can result in older people prematurely loosing confidence with basic life activities, including communication.
having limited access to positive peer group comparisons or help strategies, diminishes life opportunities.
loosing contacts which have been gained over many years affects communication as familiarity of voice tone and conversation content cannot compensate for sensory impairment.
fear of loosing familiar strategies or communication methods results in people (both the deafblind individual and family members) holding onto inappropriate methods.
as family and friends die or drift away due to frustration and feelings of inadequacy, communication opportunities are reduced and people loose the techniques and content for interaction.
any physical deterioration and the deaths of peers can be perceived as signs that the person themselves is dying. This may then result in conscious withdrawal and preparation for death.
Dual Sensory Impairment
For older people, who have gone through their whole lives as ‘able bodied’ and who may have held many of the negative stereotypes relating to impairment; to have to accept that they are now disabled is uncomfortable, it may be met with denial, or impairments are seen as a natural part of the ageing process, about which nothing can be done.
People tend to develop strategies to continue their lives with a first impairment, but cope less well with a second - partly because they have struggled enough already and because they do not have the other sense to then rely on to compensate or develop alternative strategies.
Sensory impairment is seen as a natural part of the ageing process and is therefore not challenged. Also there is a general reluctance or difficulty in overcoming the barriers to requesting or accessing support, including support for communication. Unlike interpreters for Deaf people, there is as yet no general acceptance of the need and right of access for older people to similar support.
Interpreting Methods - Case Studies
In Derbyshire the interpreting role has been explored with various deafblind people who use a range of different communication techniques.
‘W’ was accompanied attending hospital appointments where clear speech interpreting was used to re-state communication but with access to information gained through using familiar speech patterns, appropriate speed and location of delivery and re-phrasing. A relay system enabled ‘W’ to have two opportunities to pick up elements of communication. Accompanying ‘W’ to and from the appointment reduced his anxiety and discomfort created by the hospital transport service journey and provided an opportunity for him to tune into the interpreters speech. The powerlessness of the basic situation of coping with a health gatekeeper is compounded by the effects on communication of a combined sight and hearing impairment making it virtually impossible for an individual to be assertive in such a contact. The added role of advocate cannot be underestimated.
‘E’ was accompanied to a Front Room Peer Group meeting where speech relay was used to facilitate communication between two deafblind people. One of the most important areas identified by deafblind people is effective opportunities to get together with people who experience similar sight and hearing impairments. Without interpreting and technical aids to communication, interaction can be impossible. Such ‘social’ contacts can be justified given their potential to monitor and prompt a vulnerable group with changing needs, as well as lessening the impact of isolation and depression becoming too acute.
“It was lovely to chat with ‘N’, I don’t usually see anyone during the day. When can I visit again?
”I was attending a Social Services review meeting concerning a deafblind manual user. One of only few staff at the centre usually communicated for her but none had any formal training. To the question ‘Are you happy with what you do here?’ – initially the response was “yes”, but through additional prompting by the interpreter the response became:
“Is there a new programme? I’m not sure what the choices are so it’s difficult to say what I would like to do - I don’t really get involved with any particular activities at the moment…”
What had been a short, relatively meaningless, meeting in the past became much more involved. Issues were more fully explored and full communication of all contributions and discussion in deafblind manual required the meeting to be held at a slower pace in order for the deafblind person to access all the information and to contribute.
‘M’ was accompanied during a social work interview where deafblind block communication was used at the service users home. ‘M’ had recently begun to accept deafblind block but only after many years of refusal and reliance on speech with volume, clarity and familiarity. Her hearing had deteriorated so that she could no longer access information in this way. She is still not comfortable with block and finds it difficult to concentrate and to link touch to communication. An additional consideration here is the role of the interpreter in encouraging, supporting and to some extent teaching communication.
‘B’ has been provided with an interpreter during Day Centre activities. She has no hearing and limited residual sight in her left eye. At the age of 80 she has begun to learn some sign language but relies on a mixture of sign, written text, deafblind manual and objects of reference. In order to access the sessions at the day centre, multi-channel communication is used with the interpreter having to respond moment to moment depending upon the interaction. Interpreting has also been provided for this woman during hospital appointments.
“My husband usually brings me and he refuses to write things down at the time – just explains it to me later. I feel so left out when he is discussing things with the Doctor about my eyes and I have to wait. Even then – I’m sure he misses things out.
”‘J’ was supported in a residential home using visual frame adapted British Sign Language. She is a BSL user whose sight had begun to deteriorate. She had been resident in the home for 18 months following the death of her husband. The staff complained of problems in communicating with her and of her frustration. They claimed that she did not use any sort of formal communication system - only some gesture - and were apparently unaware that she used sign language.
During the interview, various issues within the home were discussed and questions were asked regarding the woman’s preferences. Although BSL was her first language, it was necessary to adapt production and to request clarification of some of her communication. She was able to receive communication depending upon the light and speed of sign production. Conversely, her hand shapes and signs had become adapted through familiarity and home use as well as arthritis.
All the above older deafblind people had the following in common:
no expectation of interpreter support
limited if any understanding of the role of the interpreter as currently defined in terms of sign language interpreters
non-standard communication needs that changed over time and situation
communication needs which could be met partly through contact and relationship
a need for someone to intervene on their behalf to control communication and even the quality of information so they could access proceedings
interpreting in situations which are not currently valued or usual
general support
Issues
There is currently no general acceptance of the need for interpreting for older people. This appears to be a product of the general value we give the contribution and participation by older people in society and the narrow role and communication techniques perceived as being the job of interpreters. Interpreting around speech, whether through lip speaking or clear relay, is not seen as necessary, putting older people at an automatic disadvantage in crucial situations where other groups would be expected to have full access to information. Family and friends continue to fill this role to whatever extent they can through duty, ignorance of alternative services or lack of available interpreters.
For those using a different communication system, such as deafblind manual, interpreting may occur, albeit on an ad hoc basis. These numbers continue to be small as there is a general lack of awareness by family and professionals of other communication techniques and so older people are not offered the opportunity to develop them. Possibly as a consequence of the lack of demand, there is also a lack of courses or professionals to teach deafblind people the communications skills they need. On top of basic communication skills, an understanding of how to use an interpreter and fundamentally some basic assertiveness training would all be available in an ideal world.
The limited numbers of adequately qualified interpreters continues to be a problem in the UK with this being compounded by the suspension of training. The broader, more complex role required to support older deafblind people in the scenarios outlined makes it essential that the professionals are adequately trained and supported to meet the presenting needs.
Some work has been undertaken around the impact of intergenerational contacts. Most interpreters are young and therefore, according to Gills and Coupland 1991, will consciously or subconsciously overaccommodate with grammatical and ideological simplification and use language codes which fuels an older person’s helplessness, giving them a negative personal and social identity and perceived, actual and instant ageing.
Two basic logistical issues also act to make supporting this group more difficult. In small meetings where the pace can be controlled, clear voice relay is acceptable but can be problematic in larger meetings where groups of people may be gathered with similar needs or interpreting will interfere with the communication from the speaker. The varied needs within a group also have to be managed as there can be conflict when those requiring strict turn taking struggle to cope with contributions from those responding to written text.
Situations
Consultant hospital appointments require a dual role in an interpreter, where enabling clear communication is paramount but in order to do this, a certain amount of advocacy has to be included to offset the impact of the Doctor/patient power imbalance (Sidell p.124 1995). Monitoring understanding is crucial in these situations and may involve some questioning, prompting and re emphasis on the part of the interpreter.
Social services meetings are usually more flexible once interpreting has been introduced, but Social service departments are still not making interpreting available or changing meeting set up for all those who could benefit. Day care reviews are a similar scenario.
Peer group activities and outings rely on more generally trained staff to provide communication and mobility support. Volunteers are also widely used with this group. The quality of access to information therefore suffers as a result.
The difficulty of accessing seminars and open days has been mentioned in regards to the interference of some types of communication support on general proceedings. Ageist assumptions about whether older people would want to participate have been used to avoid addressing these issues.
Successful Communication
With interpreting with older people with acquired deafblindness, the impact on the quality of communication gained from a relationship should not be underestimated. Deaf interpreting is done mainly at a distance, whereas the acceptability and effectiveness of the close physical proximity and touch involved in much deafblind interpreting benefits from an established relationship, which in turn takes time to develop. It will always be difficult, if not impossible, for an older person to be faced with a new interpreter, whatever their skills, and to tune into their communication straight away.
Problems
Older people have many techniques that they will have perfected both subconsciously and consciously to avoid having to acknowledge their sight and hearing impairment. In order to ensure clear communication, the interpreter may have to actively check out understanding as the older person may be smiling and nodding without comprehension as part of their usual coping behaviour. Any other group would be standing up and waving for events to be halted and clarity obtained.
Relay interpreting and deafblind manual or block can all be slow methods of communication. The skills of the interpreter may be considerable, but the ability of the older person to follow the communication may require a steadier rate. The time spent interpreting information may also be lengthened if various alternative re-phrasings or methods have to be tried. All these issues will make it difficult for the individual and the interpreter to keep abreast of events.
The concentration of the older person may also be compromised through the effort required to pick up communication or other factors associated with old age or illness. Regular breaks will be required - or shorter meetings!
The Way Forward
In conclusion, there are currently many barriers to the full access to information by older people with an acquired dual sensory impairment. The use of effective interpreting can be seen as one way to overcome many of these problems, but in being ‘effective’ the interpreter will be required to take on more than what appears currently to be accepted as their role.
Restructuring, and even controlling, meetings, teaching and practising new communication systems, developing a relationship to support interaction and advocating for the individual during meetings all have to be included if communication is to be successful.
Making sure that those who can influence policy are aware of what needs to be done around clarifying the role, expanding the training and increasing the availability of interpreters for this group is paramount.
Raising the expectations of older people and enabling access to the systems for influencing change must also be pursued so they can demand their rights for themselves. The aim has to be to enable full and free choice, control over life and environments and maximisation of capabilities, experiences, wisdom and potential. No one ever said it was an easy job.