Six Questions on the Special, the Inclusive, and the Universal

R. Adams
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Abstract

Rachel Adams uses a question-and-answer format to extend the conversations she has had with her friend and colleague Alison Piepmeier and to imagine which issues Alison might have tackled, had her friend lived beyond 2016. Rachel believes that Alison would have been wary of such developments in genomics as the commercialization of prenatal genetic tests, direct-to-consumer genetic services, and the gene-editing technology CRISPR-Cas9. She discusses Alison’s likely concerns about how genetic technology can influence society’s perception of disability, identity, and social justice. Rachel considers Alison’s response to conservatives’ continued use of disability to curtail women’s reproductive freedom today. The chapter also describes Alison’s likely concern that the #MeToo movement has overlooked people with disabilities. Rachel assumes that as Maybelle, Alison’s daughter, grows older, Alison’s own experience with a teenager and then an adult would have propelled her toward further examining such issues as sexuality, employment, and independence for people with intellectual disabilities. Finally, Rachel asks whether Alison would have had more to say about the differences between disability and illness and how much Down syndrome can represent other disabilities and how much it is simply one unique characteristic of some people.
关于特殊、包容和普遍的六个问题
雷切尔·亚当斯(Rachel Adams)用问答的形式扩展了她与朋友兼同事艾莉森·皮埃普迈尔(Alison Piepmeier)的对话,并想象如果她的朋友活过2016年,艾莉森可能会解决哪些问题。瑞秋认为,艾莉森会对基因组学的发展持谨慎态度,比如产前基因检测的商业化、直接面向消费者的基因服务以及基因编辑技术CRISPR-Cas9。她讨论了艾莉森可能关心的基因技术如何影响社会对残疾、身份和社会正义的看法。瑞秋认为艾莉森对保守派继续利用残疾来限制女性生育自由的反应。这一章还描述了艾莉森可能担心的#MeToo运动忽视了残疾人。瑞秋认为,随着艾莉森的女儿梅贝尔长大,艾莉森自己与青少年和成年人的经历将推动她进一步研究性、就业和智障人士的独立性等问题。最后,雷切尔问艾莉森是否会更多地谈论残疾和疾病之间的区别,以及唐氏综合症在多大程度上代表了其他残疾,又在多大程度上只是某些人的一种独特特征。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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