The Health Secretariat, Turks & Caicos Islands.
Nurs Ethics. 2020 Jun;27(4):1056-1065. doi: 10.1177/0969733020906599. Epub 2020 Mar 30.
The life perspectives of persons with disabilities have been neglected in many countries and particularly in lower- and middle-income countries that have fewer resources to adequately address the societal needs of these persons. Bioethics purports normative standards for the way in which we treat with others, and the virtue of care should be at the heart of everyday life. Human rights are norms that aspire to protect all persons everywhere. Within this milieu, persons with disabilities who make up a significant portion of all societies worldwide meet many social barriers that inhibit their quality of life and leave them greatly disadvantaged in comparison to able-bodied persons. This article focuses on the notion of quality of life, the presumed perspectives of biomedicine and bioethics on disability, the neglect of the lived experience of persons with disabilities, and the discrimination underlying the struggle for equal rights and opportunities for persons with disability. It argues for equal access to social and beneficial medical interventions for persons with disabilities; that persons with disabilities should be seen as different but equal; that their contributions to societal deliberations would enhance the richness of thought, views, narratives and perspectives; and that society should stop using the term disability and use instead the less value-laden term . Finally, it recommends educational campaigns to change negative attitudes towards persons with predicaments or anomalies, the respecting of human diversity, collaboration between upper-income and lower- and middle-income countries to develop strategies that seek to change negative attitudes towards persons with anomalies, and the inclusion worldwide of all these matters as a part of a bioethics agenda that advocates for respecting the human rights of persons with anomalies.
残疾人的生活视角在许多国家都被忽视了,尤其是在资源较少、无法充分满足这些人社会需求的中低收入国家。生命伦理学规定了我们对待他人的规范标准,关爱之德应该是日常生活的核心。人权是保护世界各地所有人的规范。在这种环境下,构成全球所有社会重要组成部分的残疾人面临着许多社会障碍,这些障碍限制了他们的生活质量,使他们与身体健全的人相比处于极大的劣势。本文聚焦于生活质量的概念,以及生物医学和生命伦理学对残疾的假定观点、对残疾人生活体验的忽视,以及残疾人争取平等权利和机会的斗争背后的歧视。本文主张为残疾人提供平等获得社会和有益医疗干预的机会;残疾人应该被视为不同但平等的人;他们对社会审议的贡献将丰富思想、观点、叙述和视角;社会应该停止使用残疾一词,而改用意义不那么消极的词。最后,本文建议开展教育活动,改变对有困境或异常的人的消极态度,尊重人类多样性,高收入和中低收入国家之间开展合作,制定旨在改变对异常人的消极态度的战略,以及将所有这些问题纳入倡导尊重异常人享有人权的生命伦理学议程的一部分。