중증장애인부부의 결혼생활경험에 관한 생애사 연구

Abstract

The purpose of this study is to examine the marriage life in detail and to examine the major problems and desires that they are experiencing, starting with their interest in the severely disabled couple, were performed. In order to approach this research purpose, I would like to subdivide into three questions by applying the life history analysis framework of Mandelbaum (1973) as follows.

First, what are the main areas that constitute the lives of severely disabled couples? Second, what are the important turning points of life in the married life of severely disabled couple? Third, how do married severely disabled couples maintain and adjust their marital status?

The subjects were recommended by the cooperation of B welfare center with four pairs of severely disabled couples who have been married for more than 10 years. Afterwards, the purpose and method of research, and interviews were conducted. Two pairs of married couples who were willing to share their experience through pre - interviews and who actively agreed to the research purpose were selected as final study participants. Interviews with the participants were conducted from May 2017 to September 2017. The interviews were conducted 5 to 6 times per participant, 2 to 3 hours per session, We conducted interviews more than 8 hours per person. At the beginning of the interview, the interview was conducted in the welfare center program room. Participants wanted to share their stories in detail as the sessions repeated, gradually becoming aware of the surroundings, and favoring their houses as interview sites. The analysis of Mandelbaum (1973) is based on three dimensions of life domain, turning point, and adaptation. Lieblich, Tuval-Mashiach, and Zilber (1998) categorized content approach to coding and categorizing marriage and marriage. We were able to identify 11 core categories. The results of this study are as follows.

In the marriage life of severely disabled couple, the area of life was derived from 'religion', 'social services', 'Disability Trap, Poverty', 'social relations' and 'personal activities'. Religion was an object that allowed participants to accept the suffering of life, and was the route to get answers to the unreasonableness and unhappiness of the world. And it was the only common thing that couples could share. The couples were able to overcome suffering through religion, to find answers to their lives, and to have common beliefs and concerns. This is consistent with the findings that religion life positively affects quality of marital interaction, marital retention. And it also had accepted disability and increased marital satisfaction for disabled and disabled couples. The second important area was the cost of living from the government, which enabled them to maintain a minimum standard of living and safe lifestyles. But it was the family's economic aid that filled the gap of government support in a sudden crisis. The third important area is the ignorance and negative view of disability in social relations. Participants' parents were ignorant of the disability and had negative views. And relatives and friends also treated people with disabilities as 'special', and the care they gave with these thoughts was rather being exclusion and discrimination. This gave participants a feeling of loneliness. These prejudice, discrimination, and distorted views were the difficulties that disabled people had experienced in marriage. Social discrimination, such as prejudice, ignorance, and distorted treat due to disability made participants always lonely and hard, and they also took away life opportunities. Participants remained low position or undereducated which led to limitations of economic activity and eventually to poverty. Individual efforts such as sponsors, broadcast appearances, and resource requests to resolve this were the their efforts of the desire to end poverty. The fourth important area is that people with disabilities tend to prefer interactions among people with disabilities because of their personal activities. Participants showed a tendency to enjoy personal life in social welfare organizations or groups related to persons with disabilities. They enjoyed the culture of people with disabilities mainly, better than non-disabled people.

Turning point of marriage came out as 'Pity each other', 'Childbirth and Parenting', ‘Policy improvement’, 'Conflict and Adaptation'. Participants were generally sympathetic to and pessimistic about the socially weak, and the relationship with the non - disabled was discomfort. In the spousal selection process, there were general factors such as complementarity and religion, but the affinity for the weak person had a decisive influence. It began with the emotions of compassion and developed into a sense of responsibility for each other. Such compassion and responsibility became a factor that further strengthened each other while maintaining the marriage. The process of pregnancy and childbirth after marriage was a series of difficulties due to the exclusion of the pregnancy possibility of women with disabilities, the fear of inheritance, the lack of medical institutions, the little understanding of the medical person with disabilities and lack of coping skills. And childcare assistants were the most important factor for the severely disabled people. However, they have been using informal resources because of frequent change of childcare assistants, avoidance of dispatch to severely disabled families, and limitations of cost and usable time. Since then, the process of childhood has been similar to that experienced in general parent-child relationships of puberty. But there was also a conflict due to the dual role assigned to children with their disability parents. Children with severely disabled parents were suffering internal conflicts as they were children to be cared for and guardians to care for their parents. Marital conflicts were caused by the lack of understanding of disability and the imbalance of general marital relations. However, the wife who was satisfied with the husband performing sexual satisfaction and caring spouse showed a willingness to maintain marriage. Improved welfare for people with disabilities, such as disabled people's rights and activity-assistant services, has relieved them of their dependence on their spouse, which was at the heart of a balanced marital relationship.

Finally, adaptation showed 'Thank you now', 'Embrace me and my spouse', and 'going one step further'. Understanding of spouse disability has led to gratitude of life and marital satisfaction. There has been an attempt to solve various disillusions that have been abandoned due to disability since middle age and actively participate in social activities. However, there are still limitations scope of activities. Disability and middle age limit the work activities. Participation have participated in arts and cultural education and experiences which are conducted by welfare centers, disabled groups and associations. The invisible boundary of severely disabled couples and the others remains yet.

The significance of this study is as follows. First, it is meaningful to understand the life of the severely disabled couples who are marginalized and abbreviated in our society through life history. In addition, the study of married couples has a second meaning in that it was able to look into the marriage of the couples with a disability, rather than a study focused on one sex. Based on the results of this study, we propose practical policy measures for healthy married life of the couple with disabilities as follows. First, it is a complement to current education policy to improve the perception of the disabled. In addition to the current two times per year disability awareness education, the prejudice against persons with disabilities have to be improved. From the early childhood period, people with disabilities and non-disabled persons have to live along more than nowaday. And it will naturally integrate the disabled and the non-disabled. Second, the psychological and emotional support system for the couple with disabilities. Living as a disabled couple is not much different from that of ordinary couples. However, as a couple with 'disability', the prejudice and discrimination that they experienced during the growth process and isolation resulting from it, have been hurting individuals. And these have had an effect on marital relations and children and have been a trigger for conflict. Therefore, psychological counseling for individuals, couples, and normalized parent education programs are needed. Third, it is a practical alternative to provide social welfare services for supporting the couple with disabilities. For people with severe disabilities, activity assistants are essential, but the absence of a carer to take care of their loneliness is the key prerequisite for receiving active support services. We would like to propose a policy that covers the individual-centered disability welfare policies and encompasses the couple-family.