{"title":"自闭症代表谁?新自由主义、非营利基础设施和自闭症倡导的经济学","authors":"James Samuel Kizer","doi":"10.1111/johs.12481","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <p>Arguably one of the best current examples of the nonprofit industrial complex in action, Autism Speaks dominates public discourses surrounding autism. Autistic people and their allies have long criticized the organization's harmful ideologies, but comparatively little attention has been given to how Autism Speaks develops its ideologies in the first place. I address this gap in the sociocultural study of autism in the present paper by situating Autism Speaks within neoliberal thought and demonstrating how those logics undergird its nonprofit infrastructure. Drawing upon critical nonprofit studies and Suárez's (2020) model for the drivers and determinants of nonprofit advocacy, I argue that neoliberal notions of medicalization, bodyminds, and labor are inherently intertwined with Autism Speaks' budget, resulting in the organization's narrow framing of autism advocacy and problematic ideology about Autistic people themselves.</p>\n </section>\n \n <section>\n \n <h3> A Note on Language</h3>\n \n <p>I utilize identify-first language in this essay (‘Autistic person’ instead of ‘person with autism’) to reflect the growing consensus among Autistic people that doing so is semantically necessary. Autism is not an experience that can be isolated from the person experiencing it, rendering person-first language problematic because “with autism” is a prepositional phrase that can be removed without changing the sentence meaning. But Autism <i>is</i> the meaning! Being Autistic is simultaneously salient, corporeal, discursive, and analytical; it is intrinsic to the bodyminds who possess it, which also makes it always already political. In a similar vein, I use capital-A “Autistic” when referencing Autistic people to encapsulate its political significance. See Brown (2011) and “The A Word” (2009).</p>\n </section>\n </div>","PeriodicalId":101168,"journal":{"name":"Sociology Lens","volume":"37 4","pages":"592-600"},"PeriodicalIF":0.0000,"publicationDate":"2024-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/johs.12481","citationCount":"0","resultStr":"{\"title\":\"Autism Speaks for Whom? Neoliberalism, Nonprofit Infrastructure, and the Economics of Autism Advocacy\",\"authors\":\"James Samuel Kizer\",\"doi\":\"10.1111/johs.12481\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <p>Arguably one of the best current examples of the nonprofit industrial complex in action, Autism Speaks dominates public discourses surrounding autism. Autistic people and their allies have long criticized the organization's harmful ideologies, but comparatively little attention has been given to how Autism Speaks develops its ideologies in the first place. I address this gap in the sociocultural study of autism in the present paper by situating Autism Speaks within neoliberal thought and demonstrating how those logics undergird its nonprofit infrastructure. Drawing upon critical nonprofit studies and Suárez's (2020) model for the drivers and determinants of nonprofit advocacy, I argue that neoliberal notions of medicalization, bodyminds, and labor are inherently intertwined with Autism Speaks' budget, resulting in the organization's narrow framing of autism advocacy and problematic ideology about Autistic people themselves.</p>\\n </section>\\n \\n <section>\\n \\n <h3> A Note on Language</h3>\\n \\n <p>I utilize identify-first language in this essay (‘Autistic person’ instead of ‘person with autism’) to reflect the growing consensus among Autistic people that doing so is semantically necessary. Autism is not an experience that can be isolated from the person experiencing it, rendering person-first language problematic because “with autism” is a prepositional phrase that can be removed without changing the sentence meaning. But Autism <i>is</i> the meaning! Being Autistic is simultaneously salient, corporeal, discursive, and analytical; it is intrinsic to the bodyminds who possess it, which also makes it always already political. In a similar vein, I use capital-A “Autistic” when referencing Autistic people to encapsulate its political significance. See Brown (2011) and “The A Word” (2009).</p>\\n </section>\\n </div>\",\"PeriodicalId\":101168,\"journal\":{\"name\":\"Sociology Lens\",\"volume\":\"37 4\",\"pages\":\"592-600\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-12-07\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/johs.12481\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Sociology Lens\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/johs.12481\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"0\",\"JCRName\":\"ANTHROPOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Sociology Lens","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/johs.12481","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"0","JCRName":"ANTHROPOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
可以说,“自闭症之声”是目前非盈利产业综合体的最佳范例之一,它主导着围绕自闭症的公共话语。自闭症患者和他们的盟友长期以来一直批评该组织有害的意识形态,但相对而言,很少有人关注自闭症代言人最初是如何发展其意识形态的。在本文中,我通过将“自闭症之声”置于新自由主义思想中,并展示这些逻辑如何支撑其非营利基础设施,来解决自闭症社会文化研究中的这一差距。根据重要的非营利研究和Suárez(2020)非营利倡导的驱动因素和决定因素模型,我认为,医疗化、身心和劳动的新自由主义概念与自闭症之言的预算内在地交织在一起,导致该组织对自闭症倡导的狭隘框架和对自闭症患者本身的有问题的意识形态。在这篇文章中,我使用身份优先的语言(“自闭症患者”而不是“患有自闭症的人”)来反映自闭症患者之间越来越多的共识,即这样做在语义上是必要的。自闭症是一种不能与经历它的人分离的经历,这使得以人为本的语言有问题,因为“患有自闭症”是一个介词短语,可以在不改变句子意思的情况下删除。但是自闭症才是真正的意义!自闭症同时具有显著性、物质性、话语性和分析性;它是拥有它的身心所固有的,这也使得它总是具有政治性。同样,我在提到自闭症患者时,也用大写的“自闭症”来概括其政治意义。参见Brown(2011)和The A Word(2009)。
Autism Speaks for Whom? Neoliberalism, Nonprofit Infrastructure, and the Economics of Autism Advocacy
Arguably one of the best current examples of the nonprofit industrial complex in action, Autism Speaks dominates public discourses surrounding autism. Autistic people and their allies have long criticized the organization's harmful ideologies, but comparatively little attention has been given to how Autism Speaks develops its ideologies in the first place. I address this gap in the sociocultural study of autism in the present paper by situating Autism Speaks within neoliberal thought and demonstrating how those logics undergird its nonprofit infrastructure. Drawing upon critical nonprofit studies and Suárez's (2020) model for the drivers and determinants of nonprofit advocacy, I argue that neoliberal notions of medicalization, bodyminds, and labor are inherently intertwined with Autism Speaks' budget, resulting in the organization's narrow framing of autism advocacy and problematic ideology about Autistic people themselves.
A Note on Language
I utilize identify-first language in this essay (‘Autistic person’ instead of ‘person with autism’) to reflect the growing consensus among Autistic people that doing so is semantically necessary. Autism is not an experience that can be isolated from the person experiencing it, rendering person-first language problematic because “with autism” is a prepositional phrase that can be removed without changing the sentence meaning. But Autism is the meaning! Being Autistic is simultaneously salient, corporeal, discursive, and analytical; it is intrinsic to the bodyminds who possess it, which also makes it always already political. In a similar vein, I use capital-A “Autistic” when referencing Autistic people to encapsulate its political significance. See Brown (2011) and “The A Word” (2009).