Modern medicine is full of ambitions. We experience progress, as with new and better therapy and treatment, every day. Very few people doubt the benefits of this ambitious development. Beitostoelen HSS was to become our first meeting with, and also gate and pathfinder to, the complexity, ideas and ambitions of the system of physical habilitation, developed in Norwegian society throughout the last half century. A system, whose intention is to give handicapped children caring and help to cope and function in a normal, everyday manner. We experienced that parents of these children had lots of positive experience with the system of habilitation, and that they expressed touching gratefulness to the professionals they had met.In our paper, on the other hand, we have had a different sight of view. During our stay at BHSS we did namely sense a conflict under the surface of satisfaction, though sometimes also clearly spoken, as we realized that the huge and complex mobilization of habilitation from the parents and the community, are considered also to be a strain and struggle. Though it was not our ambition to measure or analyze this experience, we wanted on some pages to pay attention to this subjective parental description of child habilitation as a necessary evil.
We approached the issue by in the first place interviewing seven of the parents who were following their children at BHSS. We also sought for relevant literature, books and articles, using Medline and Cochrane. We also realized that we had to seek for inspiration and relevancy in as well philosophy as sociology and, of course, medicine.We were now looking at the concrete meetings between parents and the system of habilitation, searching for parental experiences of negative stress. We wanted to see if there were something that could be said to be both general and in the next round of current interest for all involved parts in the habilitation, when it comes to rooms and structures, feelings and personal meetings and last but not the least, the underlying cultural and medical ambitions.
In this study we found that even though the parents give priority to live as close to normal as possible, it is our impression that the habilitation to a great extent, decide what is normal and necessary. This again may be related to the negative experience some parents describe as a provoking, “pathologizing” attitude towards the entire family from the professional. The system of habilitation´s inability to arrange individual and flexible solutions is also experienced to be very frustrating, and is a very central theme, brought up several times. Lack of information and knowledge are, not surprisingly, reducing the feeling of coping, and increasing the feeling of loneliness, perplexity and underachievement.Meetings with difficult processes and individuals are essentially what is experienced difficult, rather than already established arrangements and plans. Our study points out that the huge diversity in the group of parents is of crucial importance to recognize, in the same way as the system of habilitation also comes in various and different shapes and forms, both structurally and with persons.
And that is the ambition for this paper; to contribute to the understanding of why some of the parents of handicapped children experience the meeting, or anyway to some extent, experience some of the meetings as a strain and struggle. So that even if this great mobilisation of community and familiy resources, always will give some negative experiences to all the parents, the awareness of and knowledge about this obligate stress factors will at least reduce the feeling of a necessary evil.