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Perspectives on psycho-social aspects of CI work
Anthony Hogan
It is unrealistic for clinicians to expect a deafened person (with or without a cochlear implant) to manage every day conversations without enabling them to develop a better understanding of themselves as a person with a disability in Western Society and in the absence of assertiveness and coping skills training. Within current models of rehabilitation we coach the patient to ask everyone to change the way they speak, the pace at which they speak, where they sit or stand, to rearrange the room, to fix up the lighting, turn down the noise, to shave off their beard, to speak up or slow down and so on. Yet we know that people with hearing loss (generally speaking) lack confidence in social settings and that for most people, getting through conversations with a minimum of repair work is considered ideal. How many times have we heard a patient say 'they didn't even know that I was deaf'? For many patients, having their communication needs met in a satisfactory way means seriously disrupting the daily flow of everyday interactions and restructuring them so that their experience of disability becomes central to interactions, rather than existing on the margins of communication breakdown. But who would seriously want to do this? To disrupt the flow of conversation and attempt to renegotiate the rules of everyday communication means asking people to change. It is to create awkwardness within a relationship when things may already be awkward. It means risking further stigmatisation as a strange, odd or difficult person. It means seeking to renegotiate power relationships with existing relationships from a position of disadvantage - besides, aren't disabled people supposed to fit in anyway??. It is difficult enough to achieve basic changes in the way we live and work with people without trying to rework the very dynamics of how we interact. Yet this is the very thing we ask of our patients within the hearing rehabilitation process.
We ask patients to embrace their deafness when society as a whole spurns disability as an undesirable characteristic. We ask them to assert themselves when they lack the skills and power to do so. We ask patients and partners to rework their relationships, and the way they communicate. We ask them to redistribute inter-personal responsibilities between them, while not allowing for the fact that such patterns of behaviour have been spontaneously developed in response to often traumatic and difficult life events. Indeed, we ask them to develop new life roles and personal identities (I was a helper, now I am not needed…) without providing them with the opportunity, the rite of passage, to facilitate the change process. Surely it is time that we provided them with access to the whole package.
Most of the patients I have met know how to manage difficult communication settings, but remain unable to apply those skills in real life settings. Further, they do not believe it is OK to ask for such accommodations. Indeed, they have not developed communication competency for such a competency involves knowledge, attitude and skill. Presently they only have the knowledge - they know what to do but cannot actually apply such knowledge systemactically in their lives. Clinically we need to work with them to develop appropriate attitudes and communication skills. To feel that it is OK to seek change. To date, this rarely occurs within rehabilitation programs. As one client, with a 20 year history of hearing loss, recently observed, never in his rehabilitation experience had he ever had the opportunity to practise taking control; to develop the range of skills, and therein confidence, required to begin to work to improve the relationships that really mattered to him. Indeed, how does one rework the distribution of inter-personal communication responsibility with one's partner without suddenly seeming ungrateful for years of support through difficult times? How does one remain motivated to seek better communication when people around continually forget your deafness?
For me, this is the stuff of psycho-social rehabilitation in CI programs. The rehabilitation process is not simply about giving a person a sense of sound. It is about enabling people to remake themselves into the type of person they were and wish to become. This entails working with people to develop their identity, confidence and a sense of where they fit into the world as an individual. I like to work with people in groups since groups provide a forum in which much of this material can be quickly and easily worked through while retaining a sense of humour about things. Identity, after all, is about association. I know who I am by the reflection I find of my self in every day relationships (parent/partner etc), as well as in work, social life, religious or sporting activities and shared hobbies. Within the group process, shared experiences legitimate life as a deaf person, individuals realise that they are not alone, that their difficulties are not peculiar to them and that there is indeed a way forward.
Anthony Hogan is post-doctoral fellow in the School of Communication Sciences & Disorders, University of Sydney. Anthony has recently written the text 'hearing rehabilitation for deafened adults - a psycho-social approach' which is due to be published by Whurr Ltd, London, later this year.