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迈向智力和发展障碍研究的公平性。

Toward Equity in Research on Intellectual and Developmental Disabilities.

机构信息

Sara T. Kover, University of Washington.

Leonard Abbeduto, University of California, Davis.

出版信息

Am J Intellect Dev Disabil. 2023 Sep 1;128(5):350-370. doi: 10.1352/1944-7558-128.5.350.

Abstract

Lack of diversity in IDD research is typically conceptualized only in terms of (1) recruitment of samples that do not appropriately represent the sociodemographics of the population, or (2) the limited number of researchers from historically marginalized backgrounds. Critically, the field also suffers from over-reliance on perspectives and social systems of dominant culture-both in how disability is regarded and in relation to other dimensions of identity and culture. These lenses lead to research findings that reinforce, rather than reduce, social inequities. We propose a framework that minimizes reliance on diagnostic categories, shifts from deficit- to person-centered models, acknowledges people's multiple identities, and includes self-advocates and diverse communities as partners in the research enterprise. The systems change necessary to support this framework is described.

摘要

在 IDD 研究中缺乏多样性通常仅被概念化为以下两种情况:(1)招募的样本不能恰当地代表人群的社会人口统计学特征;(2)来自历史上处于边缘地位的研究人员数量有限。至关重要的是,该领域还存在对主流文化的观点和社会系统的过度依赖——无论是在如何看待残疾方面,还是在与身份和文化的其他方面有关。这些视角导致的研究结果加剧了社会不平等,而不是减少了社会不平等。我们提出了一个框架,该框架最大限度地减少了对诊断类别的依赖,从缺陷模式转变为以个人为中心的模式,承认人们的多种身份,并将自我倡导者和多样化的社区作为研究企业的合作伙伴。描述了支持这一框架所需的系统变革。

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