Embarrassment, Guilt and Shame
"We were walking home from school, she and I, and the discussion was focused on my unusual little brother. Unusual, that is, to everyone else. To me, he was just my little brother. Since I only had one, he was unique, regardless of his other qualities. Anyhow, my friend asked me why my brother did not talk yet, as he was almost 5 years old. I thought for a moment and said, very seriously, "Well, he only speaks French and none of us can speak or understand French, so it presents a terrible problem." She nodded with vague comprehension of the "problem." I chuckled all the way home. We were in fourth grade."
(ア）Feelings of embarrassment, guilt and shame partly depend on how a child has come to make sense of their own role and rights, and those of their brother or sister. Whether a family can appreciate different ways of living, and the degree to which the family gives value and meaning to the life of the child with the disability will influence how a sibling manages these feelings.
"I can remember being embarrassed about Cathy because she is I can really, I guess quite upsetting to see for the first time… I can remember in a bus terminal we had to spread a blanket on the floor so Cathy could crawl and get a bit of exercise. A crowd gathered and I hated the people so much. I was just terribly embarrassed and I wanted to hide Cathy and I wanted to protect her from these people who were glaring although she certainly didn't know what was going on."
By middle childhood, siblings are very aware of other people's responses to their brother or sister with a disability. Differences between children at school are magnified and full of dreadful import. Young children will be experiencing feelings of embarrassment about their brother or sister's differences for the first time and will need help to understand their feelings. While children may know the right thing to do or say, the dilemma they face is meeting conflicting needs: the need to protect their sibling and the need for peer acceptance. Siblings can feel a sense of guilt or shame for not 'standing up' for their sibling or for not doing enough to help their sibling or their parents. For some siblings these feelings don't become apparent until adulthood.
"I remember on the bus, no one wanted Bonnie to sit beside them. One girl walked with a limp. Every day I would ask her if Bonnie or I could sit with her and she would always turn away and tell me the seat was saved, day after day, no one sat beside her, she sat alone and we stood. One day, I got fed up. I picked her books up off the seat and threw them at her. Then I sat on her and made enough room for Bonnie beside me. It was an uncomfortable ride home, but I was tired of standing and I wanted to show people that they would not "catch mental retardation" sitting beside Bonnie."
Given that their identity is not yet secure, feelings of shame and guilt can be amplified for the young adolescent. Siblings discover that community attitudes towards disability or illness are often contradictory or confused. While some differences are celebrated within our culture, we tend to consider people with disabilities as 'lesser' which is evidenced by the use of insults such as 'retard'. Some siblings cope with the social stigma attached to disability by creating a layer of pride to protect themselves from negative attitudes.
By adolescence, feelings of guilt and shame are often felt when children are able to empathise with the experience of others. Guilt or shame often follows feelings of anger, embarrassment or jealousy. All children need attention, resources and special time with their parents and when a child starts to understand why their parents have limited time for them, feelings of guilt often result. These feelings can also emerge when siblings begin to understand that they have advantages that their sibling doesn't have. Having a girlfriend or boyfriend, friends to socialise with and prospects for a career can expose the stark contrast between their own life and that of their sibling. Siblings with a brother or sister with a chronic or degenerative illness may feel guilt about their own good health and opportunities in life.
"I remember being so angry at her, and then feeling so guilty. She was defenceless. I lay awake at night praying that God would forgive me for having such thoughts about my sister. The range and intensity of emotions were too much for me to handle."
（イ）Children will actively seek ways of coping with negative feelings and experiences. While religion can bring about a sense of security and solace, parents need to be mindful of children praying for miracle cures or seeking forgiveness from God in order to deal with their feelings of resentment, jealousy and anger. Listening to children and helping them to understand they are not bad people for having angry thoughts accepting them and supporting them will help to offset feelings of guilt and shame. │
It is important for parents to reassure their children that their feelings are valid, to give them strategies to cope with the reactions of others and to manage their conflicting emotions. By understanding and coping with the difficulties of family life, many siblings develop compassion and become appreciative of their own opportunities, which will in turn become the building blocks for their future emotional and psychological well-being.
（出典：Supporting Siblings: When a Brother or Sister has a Disability or Chronic Illness-Published by the Association for Children with a Disability, pp. 11-12, 2003 より抜粋。
（参考）
a sibling: (障害を持たない·男女の別なく)きょうだい
a limp:足を引きずること
stigma:汚名, (欠点·異常などをしめす) 特質,印,徴候
stark :ありのまま,むき出しの,輪郭のはっきりした
solace :慰め，慰安，安堵