VID Specialized University, Centre for Diaconia and Professional Practice, Norway.
Dev Med Child Neurol. 2023 Jan;65(1):16-23. doi: 10.1111/dmcn.15363. Epub 2022 Jul 22.
Self-determination is a human right that people with profound intellectual and multiple disabilities (PIMD) risk not being granted. Exploration of such topics and research in general has traditionally not included people with PIMD as sources of knowledge; rather, the perspective of others has been sought. Ethnographic methods highlighting descriptions of lived experience have been argued as a way of including such individuals, producing knowledge building on the person's perspective. Exploring the human right to be self-determined through ethnographic approaches can bring novel ways of understanding the concept, both about how to listen and learn from such experiences, and about implications for understanding self-determination. All people have the potential for self-determination, by being understood through embodied communication in caring relationships. By fostering relations with people with PIMD in sensitive, ethical ways, and addressing their profound dependency, their self-determination can be realized. WHAT THIS PAPER ADDS: Attentive engagement with people with lived experience of profound intellectual and multiple disabilities can inform both researchers and clinicians on self-determination. Through real-life descriptions, self-determination is demonstrated to move beyond independence and choice-making.
自主决定是一项人权，但患有严重智力和多重残疾（PIMD）的人可能无法享有这项权利。传统上，此类主题的探讨和研究通常不将患有 PIMD 的人作为知识来源，而是寻求他人的观点。强调描述生活体验的民族志方法被认为是一种纳入此类人群的方式，可以基于个人观点来构建知识。通过民族志方法探索自主决定的人权，可以为理解这一概念带来新的途径，既包括如何倾听和从这些经验中学习，也包括对理解自主决定的影响。所有人都有自主决定的潜力，通过在关怀关系中进行体现沟通来理解。通过以敏感和合乎道德的方式与患有 PIMD 的人建立关系，并解决他们的严重依赖问题，可以实现他们的自主决定。本文的新增内容：关注有严重智力和多重残疾生活体验的人，可以为研究人员和临床医生提供关于自主决定的信息。通过真实生活的描述，自主决定被证明超越了独立性和决策能力。
