Pawlus Beata
Oddział Neonatologii, Szpital Specjalistyczny im. Świętej Rodziny, ul. Madalińskiego 25 02-544 Warszawa tel: 604 068 686 e-mail:
Wiad Lek. 2016;69(2 Pt 2):306-13.
This work is devoted to the problem of shame linked to disability in children. It has been inspired by patients - disabled infants and their parents. The shame evidently experienced during meetings with parents learning about their child's condition leads to many difficult questions. Shame is not a simple, isolated emotion. It is a complicated feeling, closely connected to various shame-related emotions and experiences. Shame leads to a sense of guilt and self-blame. Shame linked to a child's disability is a shame of 'lacking' and low self-esteem. Additionally it is feeling of nakedness, vulnerability and despoilment of intimacy; it makes parents feel forced to put their interior world on display and to show their weakness caused by their child's condition. Sometimes shame is an experience of humiliation, or hurt dignity caused by the looks of other people. It is also the shame of one's own difficult thoughts, desire to escape responsibility. It is being ashamed of experiencing shame. It is an emotion of ultimate suffering, often returning during whole life. One solution to the 'discomfort of birth' could be a lonely island. The issue is not that simple, however, and philosophy helps in this respect. A being is good and it has to be good. One cannot be someone, one is not. This is the difference between a being and a desire. There is love and acceptance, but there is also shame - even on a lonely island.
这项工作致力于探讨儿童残疾所关联的羞耻问题。它的灵感来源于患者——残疾婴幼儿及其父母。在与家长交流了解其孩子病情的过程中明显感受到的羞耻引发了诸多难题。羞耻并非一种简单、孤立的情感。它是一种复杂的感受，与各种和羞耻相关的情感及经历紧密相连。羞耻会导致内疚感和自我责备。与儿童残疾相关的羞耻是一种“缺失”的羞耻和自卑。此外，它是一种裸露感、脆弱感以及亲密关系被剥夺的感觉；它让父母感到被迫展示自己的内心世界，并暴露因孩子病情而产生的脆弱。有时，羞耻是一种羞辱的体验，或是因他人的目光而受到伤害的尊严感。它也是对自己艰难想法、逃避责任欲望的羞耻。它是因体验到羞耻而感到羞耻。它是一种极致痛苦的情感，常常伴随一生。解决“出生的不适”的一个办法可能是一座孤岛。然而，问题并非如此简单，而哲学在这方面能有所帮助。一个存在是美好的，而且必须是美好的。人不能成为自己不是的那种人。这就是存在与欲望之间的区别。有爱与接纳，但也有羞耻——即便在孤岛上也是如此。
