Dorte Lindberg Jensen
“A person who is severely impaired never knows his hidden sources of strength until he is treated like a normal human being and encouraged to shape his own life” –Helen Keller, 19551.
“A person never deals with another human being without holding some of its life in his hand” –K.E. Løgstrup, 19562.
These sixty year old quotes by Keller and Løgstrup are as valid today as they ever were, not least when it comes to the ethical challenges inherent when working with people with congenital deafblindness. Having worked with adult people with congentital deafblindness for several years I find it very interesting how the concepts of partner competence and ethics unfolds in my work and how the concepts invites such thought provoking questions as: How can I give the person with deafblindness the opportunity to make their own decisions when it is so problematic for them to express their wishes and dreams? How do we place ourselves as caregivers together with the one who needs support in such a way that as a competent partner I am able to contribute to an environment characterized by equality and appropriate ethical relations?
This article attempts to explain how ethical considerations can be a beneficial extension to the concept of partner competence and how this ethical perspective can create a reflective environment through sharing thoughts with colleagues working with people with congenital deafblindness.
According to the Norwegian psychologist Per Lorentzen3, one must try to organize situations in a way that the other person succeeds. Such an approach can be a useful starting point when staff supporting people with congenital deafblindness considers how they can become a competent communication partner. What characterizes a successful communication partnership here is twofold: that the relationship between the staff member and the person with deafblindness is recognized as equal, and that each of the partners have resources that the other person can benefit from. In this regard, the basis of the partner competence is equality, reciprocity, recognition and fellowship; all concepts which help build the relationship between partner and the person with congenital deafblindness.
When working in Denmark around congenital deafblindness, the dialogical perspective is very important. Dialogue here contains three elements: Oneself, the other person and the relationship between them. The Language created in this relationship is context-sensitive, i.e. depends on circumstances: By doing something with another person we learn the language that goes along with this specific act. This develops the sense of self and identity.
The American psychologist Jerome Bruner4 has said that knowledge is created through dialogue, negotiation and fellowship. With this in mind, the partner can take a narrative (person centred) approach to his work, by putting a large emphasis on creating and telling stories together with the person with deafblindness. Through this approach the person with congenital deafblindness is able to create Body Emotional Traces (BET´s)5 which are preserved in their memory. Another angle is working with reciprocity; in this approach the focus is on listening, understanding and acknowledgement, which helps create an equal relationship between the partner and the person with deafblindness.
Ethics primarily concerns the personal reflections one has in relation to specific choices and actions, and the standards and values that they are based on. In a specific situation ethical responsibility is always personal, because it is oneself who determines if an action, and therefore the relationship between the partner and the person with deafblindness, is ethically sound.
The driver in the ethics of care is the sympathy and the empathy with the fellow human6. For the partner, this entails both the empathy for the person with deafblindness, and the ability to take appropriate actions. In this matter, Per Lorentzen (2011) notes, that it is the interaction between people that allow ethical actions to occur. This however demands an open minded approach and an active response. Henceforth, listening, understanding and responding appropriately are key factors in acting ethically. As this shows, ethical thinking is strongly related to the dialogical perspective, which often is regarded as a cornerstone in the daily work with people with congenital deafblindness.
Dilemmas according to the dual sensory loss
Several dilemmas exist in terms of working with people who have a dual sensory loss. In the ethics of care, sympathy and the empathy are important issues. The competent partner of course tries to empathize, but can he really relate to the life of a deafblind person? The partner´s task is to obtain knowledge about the severity of the person’s dual sensory loss. Does the person with deafblindness use part of his hearing or sight, or is touch their primary sense? This is an important question, the answer which helps the partner empathize with the other person.
According to the ethics of proximity, we need to ask ourselves how we should act responsibly regarding the person with deafblindness considering that his life is so different from ours (Per Lorentzen, 2011). In this regard, it is important that the communication partner respect the differences between them-self and the person with deafblindness and appreciate that their attitude towards life may not be the same as the other person. The responsible action then is to respect the initiatives of each other and together try to find a common way of communication.
To create a reflective environment
Ethical interactions that are undertaken between the staff member and the person with congenital deafblindness should be based on the choices that the deafblind partner makes in specific situations. At the same time the communication partner is a member of staff who together with his colleagues are employed to create a supportive environment for the people with deafblindness. Because of that, there needs to be an open and reflective approach to ethical questions not just by the individual partner as such, but by the institution as a whole.
In my understanding, it is important to share mutual values with my collegues on ethical questions. If we want mutual values in our staff group it is important to discuss and reflect upon ethical questions. According to Per Lorentzen (2011) these ethical choices are always personal; but in a staff group it is important to have a common understanding.
In this way an ethical perspective can be seen as an extension of the partner competence, where the partner makes an ethical choice based on knowledge and professional insight. By doing this, the competent partner helps create a reflective or thoughtful environment for how to work with people with congenital deafblindness.
Dorte Lindberg Jensen (firstname.lastname@example.org)
Center for Døvblindhed og Høretab, Denmark (www.cdh.rn.dk)
2 From the book by K.E. Løgstrup: ‘The Ethical Demand (Den Etiske Fordring)’ originally published in Danish in 1956.
3 Taken from the book by Per Lorentzen: “Ansvar Og Etik I Socialpædagogisk Arbejde”, 2011. Publisher: Akademisk Forlag
4 “Teorier om læring” by Tom Richie, 2010. Publisher: Billesø og Baltzer
6 The reference is taken from the book “Etiske teorier” by Associate Professor, Jørgen Husted (Aarhus University, Denmark). Published, 2014 by Hans Reitzels forlag.