Abstract:

The adulthood of people with profound intellectual disability is a kind of taboo in scientific research and deliberations. The medical development influenced the length of life of people with profound intellectual disability, they live longer and thus enter all stages of life, adolescence, adulthood, old age, which once were not attributed to them. It is necessary to face the main question: what conditions should be provided so that a person with profound intellectual disability could present traits attributed to adulthood?

The aim of the study was theoretical, empirical and practical analysis of various aspects of experiencing motherhood of single mothers of adult children with profound intellectual disabilities. The analysis of the research results presented in the text was carried out in accordance with the accepted research problems:
(1) How do mothers of adults with profound intellectual disabilities cope with the sexuality of their children?
(2) What is the significance of internal and external factors in the creation of the social image of an adult woman and an adult man with profound intellectual disabilities?

The respondents’ age varied between 50 and 78 years. The women were from different regions of Poland, were single mothers and divorced. We used a narrative interview which is similar to in-depth, free conversations. Through follow-up questions, we were trying to encourage the interviewees to tell a story of their experience of social exclusion. We analysed the information shared during the participant interview 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. Our analysis of the transcribed interviews was guided by GT principles (Glaser, Strauss, 1967), which include limiting the researcher’s pre-conceptualisation and focusing on theoretical sampling. We divided the data into smaller units, called incidents, which we then conceptualised and related to other incidents. Our general analytical procedure was to constantly and iteratively compare incidents. The study was conducted in Poland between September 2016 and January 2018.

The conducted research has revealed that the adulthood in which people with profound intellectual disabilities function is in particular created and shaped by their caregivers, social attitude, and then by themselves regarding the abilities and difficulties they have. This is a period when people with profound disabilities are at risk of marginalisation and social exclusion. They also require special financial and psychological support. The lack of institutions supporting people with profound intellectual disabilities makes adulthood a period when individuals cease to be socially active, when they often experience regression in their development, and their developing sexuality remains a taboo subject and a problem for their caregivers. This is a period when caregivers face many problems resulting from the sexuality of their adult children: (increasing aggression, masturbation, touching intimate places, exposing oneself, self-mutilation, the need for excessive cuddling, sleeping in the same bed with the mother).

Keywords:

person, adulthood, profound intellectual disability, sexsuality