‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities
‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities
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“我的儿子失去了尊严”：严重智力障碍和多重残疾者的尊严
DOI：
10.1080/09687599.2022.2045190
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发表时间：
2022
期刊：
影响因子：
--
通讯作者：
D. Willems
中科院分区：
文献类型：
--
作者：
E. Olsman;A. Nieuwenhuijse;D. Willems
摘要本研究的目的是描述和评估深度智力残疾和多重残疾的人的尊严的理解。固有的尊严不能丧失，这是作为一个人所固有的。此外，尊严是这些人在多大程度上有足够的积极经验（个人尊严），在与熟悉的其他人（关系尊严）或与未知的其他人（社会尊严）的关系中有尊严。虽然固有尊严有时不包括这些人及其家庭成员的经历，但其他理解是渐进的，这意味着这些人可能失去尊严。这些谅解表达了一种关切：重度残疾人的生命分别值得尊重、生活、分享和关心。我们的结论是，他们可以有尊严，如果有不同意见，必须澄清尊严的含义，并明确所关切的问题。一位母亲说，“我的儿子失去了尊严，”而其他父母则声称，他们的孩子，像任何其他人一样，不能失去尊严。本文阐明了对尊严的理解之间的这些差异。在这项研究中，四个深刻的智力和多重残疾人的尊严的理解进行了评估。这意味着它们的优点和局限性被描述。本文认为，父母和其他人，指的是严重残疾人的尊严，想表达一种关切。他们想表明，这些人的生命值得尊重、生活、分享或关心。这篇文章的结论是，父母、医疗保健专业人员或其他对严重残疾人的尊严持不同意见的人，应该对其他人的担忧敞开心扉。虽然他们的关注点可能不同，但他们显然都关心这个人，这是提供良好护理和支持的出发点。
Abstract The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake. Points of interest A mother stated, ‘My son has lost his dignity,’ while other parents assert that their child, like any other human being, cannot lose his dignity. The paper clarifies these differences between understandings of dignity. In this study, four understandings of dignity of persons with profound intellectual and multiple disabilities are evaluated. This means that their strengths and limitations are described. Parents and others, referring to dignity of persons with severe disabilities, want to express a concern, this paper argues. They want to make clear that the lives of these persons are worth respecting, living, sharing or caring about. Parents, health care professionals or others who disagree on dignity of a person with severe disabilities, this article concludes, should open themselves up for the other’s concerns. While their concerns may differ, they are both obviously concerned about this person, which is the starting point for providing good care and support.