Abstract:

Maternity is a frequently undertaken topic of research both in Poland and around the world. However, the mothers of the adults who require support in any aspect of their lives, i.e. people with profound intellectual disability, remains a kind of "research gap". The same also applies to various types of legal and social welfare solutions, which, although addressed to the people with disabilities and their families, do not meet the needs of individuals with profound intellectual disabilities or their caregivers. Therefore, the question arises in what way it is the main objective of the study was a theoretical, empirical, methodological and practical analysis meant to answer the following question: do the mothers of adults with profound intellectual disability feel socially excluded? And if so, in what way? Does the sense of social exclusion affect their motherhood? The research in a group of the mothers of adults with profound disabilities (where adults mean people over 25 years old - the threshold is the age when any form of education, such as revalidation classes, is no longer provided to such people), conducted in 2016-2018, shows that they feel socially excluded and that this affects and intensifies the social marginalization of their adult daughters and sons. The research group consisted of 34 women. The respondents (mothers) were from 50 to 78 years old. The women were from different regions of Poland, both single mothers and divorced. Their economic status was very diversified. Some of them did not work professionally all their lives because they had to take care of their children. Each interviewee signed a written consent to participate in the study. The analysis concerned their various experiences over the years and their impact on their role as mothers through the key question: What is it like to be a mother? The interviews lasted from 120 to 240 minutes and were recorded on a voice recorder. I used a narrative interview which is similar to in-depth, free conversations. Through follow-up questions, I was trying to encourage the interviewees to tell a story of their experience of social exclusion. I analysed the information shared during the participant interviews using analytical methods that align with a grounded theory because it involves building a theory on the basis of systematically obtained data that directly relate to the observed aspect of social reality. My analysis of the transcribed interviews was guided by GT principles, which include limiting the researcher’s preconceptualisation and focusing on theoretical sampling. I divided the data into smaller units, called incidents, which I then conceptualised and related to other incidents. My general analytical procedure was to constantly and iteratively compare incidents. The analysis of their statements showed that the women had to deal with social marginalization for many years, and that they experienced it even from the closest family members, neighbours or people from their communities. It had a huge impact on the their entire motherhood, psychological well-being, and, more importantly, on their social identity. The sense of exclusion had an impact on the current image of motherhould in the respondents. It had also a huge impact on the formation of their psychosocial identity. Over the years it has led to a number of phenomena, such as self-exclusion of these women from their communities, avoidance or unwillingness to build social relations.

Keywords:

Profound intellectual disability, social exclusion, mother.