Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production.
Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production.
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DOI：
10.3389/fpsyg.2021.727542
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发表时间：
2021
影响因子：
3.8
通讯作者：
Botha M
中科院分区：
文献类型：
--
作者：
Botha M
自闭症研究一直关注自闭症主导和参与性研究，但很少讨论该领域是否适合自闭症参与。虽然对参与性和/或自闭症主导的研究的关注受到广泛欢迎，但还应该就如何在知识创造过程中对待自闭症患者进行更广泛的对话。因此，我作为一名自闭症研究者，对我在学术界的经历进行了批判性反思。在讨论我的学术生涯以及我对自闭症的非人化、物化和暴力描述之前，我首先质疑自己是一名学者、活动家还是倡导者。我强调客观性的构建如何导致无法质疑这些非人性化的自闭症解释的有效性，这些解释因其感知的“客观性”而被认为是“科学合理的”。此外，我还讨论了如何利用客观性的理念以不诚实的方式排除自闭症专业知识，特别是当这些知识挑战现状时。尽管声称没有价值，这些对自闭症的非人性描述却体现了社会和文化价值观，完全缺乏透明度或承认。然后我讨论这些非人性化的叙述和理论——与价值观纠缠在一起——如何影响自闭症患者的生活，并成为我们的构成方式。接下来，我讨论了自闭症患者在遇到这些叙述时感受到的愤怒的合理性，我并没有敦促人们远离这些情绪，而是讨论了“靠拢”作为面对基于研究的暴力时的激进异议行为的价值。然后，我呼吁采取行动，敦促所有撰写或谈论自闭症的人反射性地参与他们的价值观如何塑造他们对自闭症患者的理解和构建。最后，我通过回答我的开场问题来结束：我已经成为一名倡导者、活动家和学者。对我来说，属于自闭症群体，承认我们的边缘化，并认识到我们在社会中的痛苦，意味着对更美好和公正未来的希望一直并将永远支撑我的工作。
There has been a focus on autistic-led and participatory research in autism research, but minimal discussion about whether the field is hospitable to autistic involvement. While the focus on participatory and/or autistic-led research is abundantly welcome, a wider conversation should also happen about how autistic people are treated in the process of knowledge creation. As such, I present a critical reflection on my experiences of academia as an autistic autism researcher. I open by questioning whether I am an academic, an activist, or an advocate before discussing my journey through academia, and my exposure to dehumanizing, objectifying, and violent accounts of autism. I highlight how the construction of objectivity has resulted in a failure to question the validity of these dehumanizing accounts of autism, which are regarded as “scientifically-sound” by virtue of their perceived “objectivity.” Furthermore, I discuss how the idea of objectivity is used to side-line autistic expertise in disingenuous ways, especially when this knowledge challenges the status-quo. Despite claiming to be value-free, these dehumanizing accounts of autism embody social and cultural values, with a complete lack of transparency or acknowledgment. I then discuss how these dehumanizing accounts and theories—entangled in values—reverberate into autistic people's lives and come to be ways of constituting us. Following this, I discuss the rationality of the anger autistic people feel when encountering these accounts, and instead of urging people to distance themselves from these emotions, I discuss the value of “leaning-in” as a radical act of dissent in the face of research-based violence. I then make a call to action urging all those who write or speak about autism to engage reflexively with how their values shape their understanding and construction of autistic people. Lastly, I conclude by answering my opening question: I have emerged as an advocate, activist, and academic. For me, belonging to the autistic community, acknowledging our marginalization, and recognizing our suffering within society means that hope for a better and just future has always, and will always underpin my work.
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DOI：
10.1111/jcpp.13249
发表时间：
2021-01
期刊：
Journal of child psychology and psychiatry, and allied disciplines
影响因子：
--
作者：
Bottema-Beutel K;Crowley S;Sandbank M;Woynaroski TG
通讯作者：
Woynaroski TG
影响因子：
2.4
作者：
Botha, Monique;Dibb, Bridget;Frost, David M.
通讯作者：
Frost, David M.
影响因子：
2.3
作者：
Ansara, Y. Gavriel;Hegarty, Peter
通讯作者：
Hegarty, Peter
影响因子：
6.2
作者：
Czech, Herwig
通讯作者：
Czech, Herwig
影响因子：
64.8
作者：
De Rubeis, Silvia;He, Xin;Goldberg, Arthur P.;Poultney, Christopher S.;Samocha, Kaitlin;Cicek, A. Ercument;Kou, Yan;Liu, Li;Fromer, Menachem;Walker, Susan;Singh, Tarjinder;Klei, Lambertus;Kosmicki, Jack;Fu, Shih-Chen;Aleksic, Branko;Biscaldi, Monica;Bolton, Patrick F.;Brownfeld, Jessica M.;Cai, Jinlu;Campbell, Nicholas G.;Carracedo, Angel;Chahrour, Maria H.;Chiocchetti, Andreas G.;Coon, Hilary;Crawford, Emily L.;Crooks, Lucy;Curran, Sarah R.;Dawson, Geraldine;Duketis, Eftichia;Fernandez, Bridget A.;Gallagher, Louise;Geller, Evan;Guter, Stephen J.;Hill, R. Sean;Ionita-Laza, Iuliana;Gonzalez, Patricia Jimenez;Kilpinen, Helena;Klauck, Sabine M.;Kolevzon, Alexander;Lee, Irene;Lei, Jing;Lehtimaeki, Terho;Lin, Chiao-Feng;Ma'ayan, Avi;Marshall, Christian R.;McInnes, Alison L.;Neale, Benjamin;Owen, Michael J.;Ozaki, Norio;Parellada, Mara;Parr, Jeremy R.;Purcell, Shaun;Puura, Kaija;Rajagopalan, Deepthi;Rehnstrom, Karola;Reichenberg, Abraham;Sabo, Aniko;Sachse, Michael;Sanders, Stephan J.;Schafer, Chad;Schulte-Ruether, Martin;Skuse, David;Stevens, Christine;Szatmari, Peter;Tammimies, Kristiina;Valladares, Otto;Voran, Annette;Wang, Li-San;Weiss, Lauren A.;Willsey, A. Jeremy;Yu, Timothy W.;Yuen, Ryan K. C.;Cook, Edwin H.;Freitag, Christine M.;Gill, Michael;Hultman, Christina M.;Lehner, Thomas;Palotie, Aarno;Schellenberg, Gerard D.;Skiar, Pamela;State, Matthew W.;Sutcliffe, James S.;Walsh, Christopher A.;Scherer, Stephen W.;Zwick, Michael E.;Barrett, Jeffrey C.;Cutler, David J.;Roeder, Kathryn;Devlin, Bernie;Daly, Mark J.;Buxbaum, Joseph D.
通讯作者：
Buxbaum, Joseph D.