1. Towards Neuroequality: Reframing Nonspeaking Communication, Cerebral Visual Impairment and Intellectual Disability
Hybrid
Meeting ID: 957 7307 9827
Passcode: 194236
Panellists: Rachel Nelson, Kenny Cowle, Izy Utley & George Watts
Chair: Warda Farah
Rachel Nelson | ''[T]he thinking of people like me is only taken seriously if we learn your language
Abstract: In a video entitled ‘In My Language’ (2007), the late Mel Baggs powerfully asserts that ‘the thinking of people like me is only taken seriously if we learn your language’. Baggs confronts the devaluation of nonspeaking communication using their ‘native language’, which does not involve spoken words. This dissertation takes up the challenge Baggs sets here: to ‘learn [the] language’ of nonspeaking neurodivergence. I argue scholastic classifications of neurodivergent ‘silence’ are erroneous and harmful, prioritising autoethnography to represent the true expansiveness of nonspeaking communication. Julie Rodas’ assertions of ‘silence’ in Autistic Disturbances (2018) are engaged with and challenged, implementing Alison Kafer’s (2013) political/relational model of disability, and Dan Degerman’s (2023) arguments about silence in mood disorder and epistemic justice. This project contributes to discussion of the possible second, critical wave of neurodiversity studies by emphasising the consequences of devaluing nonspeaking perspectives, and the potential for critical academic work to radically combat this. Researchers must represent the nonspeaking communication of neurodivergent people instead of perpetuating epistemic injustice by assuming silence. Standpoint epistemology is employed to clarify my position: I am a speaking neurodivergent person, and I worked with nonspeaking young people as a teaching assistant at a specialist school. While acknowledging problems with pedagogic settings and maintaining confidentiality, I consider communication methods produced and used individually or collaboratively by nonspeaking people in education and elsewhere. Generic examples of Picture Exchange Communication Systems and communication boards are closely read, along with recent neurodivergent life writings, as autoethnographies advancing nonspeaking perspectives which the academy currently overlooks. Thus, the epistemological authority of nonspeaking neurodivergent people is prioritized. The stakes of this work could not be higher: while improper characterisation of nonspeaking communication continues, real harm is done to neurodivergent people whose experiences are not included. As Baggs contends, this is a human rights issue.
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Kenny Cowle | Resisting the Hierarchy of Vision: An Autoethnographic Approach to Visual Neuroequality
Abstract: Cerebral Visual Impairment (CVI) is a brain-based visual impairment in which the brain is unable to process information from the eyes along the visual pathways of the brain (Lueck & Dutton, 2015). The hierarchy of vision almost exclusively discusses CVI as a sub-par derivative of neurotypical vision, and the experiences of people with CVI are rarely discussed as equal and independent. If understandings of CVI are exclusively based on the notion that neurotypical vision should be the benchmark for comparison, then knowledge of CVI will always be restricted by the scope of the neurotypical.
The characterisation of CVI in this way is casually responsible for excluding people with CVI from participating more widely in developing and understanding vision. The hierarchy of vision is so powerful in convincing people with CVI that their experiences are lesser; they are largely unaware of the injustice being done to them. So much so that people with CVI have unconsciously accepted that their vision is to be validated and understood as a derivative of neurotypical vision.
The author is an artist with CVI whose photographic practice has allowed her to reveal new understandings of her visual experience. Her current PhD research project focuses on how the act of photography and the fine-art photograph that she creates can be used to develop and communicate new understandings of CVI. In this paper, she will present why she believes it is important to resist the hierarchy of vision when attempting to understand Cerebral Visual Impairment and how she is attempting this within her own research.
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Izy Utley, George Watts | Where are the autistic people with intellectual disability in neurodiversity research? Contradictions and future directions.
Abstract: The discourse around autistic people is changing from deficit-based understandings towards more neurodiversity affirming narratives. A key contributor to this change is the inclusion of autistic perspectives within research, particularly research that is co-produced with autistic people. Approximately 30% of the autistic population have a co-occurring intellectual disability, however, this population is not yet consistently included in either ND affirming research or the wider discourse around neurodiversity .
Autistic adults with co-occuring intellectual disability may have differences in communication and thinking styles which do not align with typical methods of recruitment to studies or data collection methods. Ensuring all stages of the research process are accessible and including autistic people with ID as advisors and members of the research team is key to increasing representation of this group in the literature and neurodiversity discourse.
In this presentation we draw on both the literature and our practical experiences as PhD researchers to describe the common barriers to meaningful inclusion of autistic people with intellectual disability within autism research. We discuss the implications of the lack of knowledge about this population for research and practice. We conclude with recommendations for increasing the participation of autistic people with intellectual disability in autism research.
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Speaker Bios:
Rachel Nelson: I am in the final year of my undergraduate degree in English and History at the University of Bristol. I have dedicated my degree to specialising in frameworks including critical disability studies, critical autism studies, and neurodiversity studies. My personal and professional experiences have informed my belief in the importance of these frameworks. With encouragement from my supervisor, Dr. Abs Ashley, I am submitting the abstract of my dissertation to this conference. I aim to complete a PhD in this field, and I have applied to the Medical Humanities MA at Durham University as the next step towards this goal.
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Kenny Cowle: I am a current PhD candidate in the School of Visual Communication at Birmingham City University. My research focuses specifically on developing new understandings of Cerebral Visual Impairment (CVI) through photography.
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George Watts: George Watts, they/she, is an autistic PhD researcher at Durham University. Their research explores contact between autistic adults, including those with co-occurring ID, and Quality of Life. George also works as an autism trainer, consultant, mentor and charity trustee and is a parent to two autistic children.
Izy Utley: Izy Utley, she/her, is a non-autistic clinical doctorate student at University of Stirling. Her research explores how autism is experienced and understood by autistic adults with ID. Izy also works as a speech and language therapist in NHS Lothian and a research fellow in the National Autism Implementation Team (NAIT).
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Meeting ID: 957 7307 9827
Passcode: 194236