Between recognition and disregard (erd-zam)
Background and aims
To the Project Homepage in German: Eine andere Kindheit
To the Project Homepage in French: Une autre enfance
In institutions for children and adolescents with physical disabilities, all rehabilitation measures are provided at one place, which has a lasting impact on the children and adolescents’ lives and their socialization experiences. Persons in these closed institutions bear the risk of violations of integrity due to the young person’s great vulnerability and need for help. Time and time again, affected persons give reports of experiences ranging between care and coercion, self-determination and external determination, and power and powerlessness, and they in part also report traumatic experiences in institutionalized care for persons with physical disabilities.
There has been little research on the experiences of the affected persons.There are no cross-institution studies available, and there is also a lack of discourse on coercive measures, external determination, violence, the experience of dependency, and protection and care in care institutions for persons with physical disabilities in the second half of the 20th century. The aim of this research project is to examine the tensions between recognition and disregard from the viewpoint of the affected persons and, from their experiences, to gain knowledge about structures and services for persons with physical disabilities that promote and support recognition.
- What experiences of recognition and disregard did children and adolescents with physical disabilities and multiple disabilities (“affected persons”) have in care institu-tions for persons with physical disabilities from 1950 to 2010?
- What effects have these experiences (subjective experiences) had on the affected persons’ lives?
- What are central factors in recognition and disregard, can they be considered as inter-subjective patterns of the affected persons’ biographies?
- In which context of care for persons with physical disabilities can those experiences be located in contemporary history?
- What awareness of recognition and disregard is present in institutions for the care of persons with physical disabilities today (from 2010 on), and what measures will promote and secure recognition in the future?
The study is designed as participatory from the ground up; it includes stakeholders (affected persons, specialists practising in the field, academic researchers) in all phases of the research process. This concerns the collection of data through interviews with affected persons, but also the design of the study, the interpretation of the data with affected co-researchers, and the triangulation of results with practitioners working in the field. Due to the strongly participatory approach of the research project, methodological steps may possibly be adapted based on roundtable discussions with stakeholders. For this reason, they cannot yet be definitively determined.
The interview partners are persons in two language regions (German-speaking and French-speaking Switzerland) and three age cohorts (born ca. 1950, 1970, and 1990). We chose narrative interviews as the method for the interviews, as this method is intended to protect interview participants from re-traumatization and to encourage the telling of subjective memories and episodes.
The interviews will be transcribed and a qualitative content analysis will be carried out, focusing on experiences and descriptions of ‘recognition’ and ‘disregard’. With the help of a historical corpus of sources, the academic researchers will put the results of the interview in the context of contemporary theories of care for people with physical disabilities.Triangulation of the results of the interview with practitioners will be done through group interviews with experts from the two language regions in which the experts take a stand on the research findings and generate possible future changes.
We expect that the interviews with persons with physical and multiple disabilities will reveal a wide range of experiences in the area of tension between recognition and disregard, and that stable "risk and protection factors" will emerge in relation to recognition and disregard. We also assume that discourses and practice differed between German and French-speaking Switzerland and accordingly had different effects on those affected by physical and multiple disabilities. Further, we expect to find a clear change in the experiences of the 1990 cohort in favor of recognition compared to the older cohorts. Regarding practice, it can be assumed that the experts of the field will be able to generate concrete conclusions and recommendations for care of persons with physical disabilities, also regarding the implementation of the UN Convention on the Rights of Persons with Disabilities.