Botha Monique
Division of Psychology, University of Stirling, Stirling, United Kingdom.
Front Psychol. 2021 Sep 28;12:727542. doi: 10.3389/fpsyg.2021.727542. eCollection 2021.
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.
自闭症研究一直聚焦于由自闭症患者主导和参与的研究，但对于该领域是否接纳自闭症患者的参与讨论极少。虽然对参与式和/或由自闭症患者主导的研究的关注非常值得欢迎，但也应该就自闭症患者在知识创造过程中是如何被对待展开更广泛的讨论。因此，我对自己作为一名自闭症研究者在学术界的经历进行批判性反思。在讲述我在学术界的历程以及我所接触到的对自闭症的非人性化、物化和暴力描述之前，我首先质疑自己是一名学者、一名活动家还是一名倡导者。我强调客观性的构建如何导致未能质疑这些对自闭症的非人性化描述的有效性，这些描述因其被认为的“客观性”而被视为“科学合理”。此外，我讨论了客观性的概念是如何以不诚实的方式将自闭症患者的专业知识边缘化的，尤其是当这种知识挑战现状时。尽管声称无价值观倾向，但这些对自闭症的非人性化描述体现了社会和文化价值观，却完全缺乏透明度或承认。然后我讨论这些与价值观纠缠在一起的非人性化描述和理论如何在自闭症患者的生活中产生回响，并成为塑造我们的方式。在此之后，我讨论自闭症患者在遇到这些描述时所感受到的愤怒的合理性，并且我不是敦促人们远离这些情绪，而是讨论“深入探究”作为面对基于研究的暴力时的一种激进反抗行为的价值。然后我呼吁采取行动，敦促所有撰写或谈论自闭症的人反思自己的价值观如何塑造他们对自闭症患者的理解和构建。最后，我通过回答开篇的问题来结束：我已成为一名倡导者、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苦难意味着对更美好、更公正未来的希望一直以来并将永远支撑我的工作。
