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Saturday, November 9, 2019

Person-First or Identity-First?

From the preface to The Politics of Autism.
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
Giacomo Vivanti has an essay at The Journal of Autism and Developmental Disorders titled "Ask the Editor: What is the Most Appropriate Way to Talk About Individuals with a Diagnosis of Autism?"
Although person-first and identity-first language reflect a common intent to de-pathologize autism and inspire respect, they do so through the lens of two different agendas—the first one prioritizing the principle that the individual is more than the diagnosis, and the second one advancing the idea that the diagnosis itself should be reason for pride and respect. This latter agenda is being increasingly endorsed by many segments of the autism community as a revolutionary change in our understanding of autism (Baron-Cohen 2017; Pellicano et al. 2018), although concerns have been raised about its relevance to some individuals and groups touched by autism, including those in the more impaired end of the spectrum (Jaarsma and Welin 2012; Mitchell 2019; Ortega 2009). In contrast, there has been less attention to the “centrality of the person” agenda that person-first language aspires to promote, i.e., the acknowledgement that beyond the autism diagnosis— and its negative as well as positive associations—there is a unique person whose human rights should be respected. The human rights violations that individuals with autism and other disabilities continue to experience suggest that recognizing the humanity and individuality of each person in the spectrum continues to be a priority (e.g., Drew et al. 2011; United Nations Committee on the Rights of Persons with Disabilities 2017). This is particularly important for those in the most impaired end of the spectrum, such as minimally verbal individuals, who are less equipped to advocate for their rights and more at risk to be treated as “less than people”. Although the two perspectives are not mutually exclusive, the challenges experienced by these groups might relate more to the “we are people first” priority conveyed by person-first language than to the “autistic pride” narrative conveyed by identity-first language. In addition to the focus on humanity, the emphasis on individuality expressed by person-first language appears to still be relevant to many in the autism community. For example, when reviewers urge authors to use identity-first language in their manuscript because it “reflects the preferences of the autism community” they are failing to acknowledge that the views expressed by the self-selected responders in the Kenny et al. surveys might not reflect the experience of other individuals or groups in the autism community who had not been engaged in the study (e.g., minimally verbal adults). Arguably, this is the kind of phenomenon that person-first language had the purpose to counteract.
Against this background, a complete shift away from person-first language appears premature. Rather, we support the judicious use of person-first and identity-first language in our journal as appropriate for the context, taking into account the preferences of participants described in each study and, when these preferences are unknown, considering how different linguistic formulations relate to different historical agendas, priorities and experiences of different groups and individuals within the autism community