This weeks post is by Marta Jorba (Pompeu Fabra University), Valentina Petrolini (University of Bologna), and Bianca Cepollaro (University Vita-Salute San Raffaele). Presenting their recent paper open access 'Person-first and identity-first approaches to Autism: metaphysical and linguistic implications' in Synthese.
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Marta Jorba |
We may be tempted to think that this debate involves a mere terminological preference, but on closer examination we discover that it actually involves a wide range of metaphysical and linguistic commitments and assumptions. What lies behind such prima facie terminological claims and disputes? This is the main issue we tackle in the paper: “Person-first and identity-first approaches to autism: metaphysical and linguistic implications”.
We start by distinguishing two levels that bring to bear on this complex and delicate issue, namely the metaphysical and the linguistic. On the one hand, the metaphysical level explores the conveyed conception of autism with respect to identity and personhood; the linguistic level, on the other hand, deals with the labels that seem prima facie most consonant with each metaphysical view. Intuitively, the person-first approach seems to align to a medical interpretation of autism, where the condition is seen as something undesirable that people want to separate from the person. This use is prevalent in the medical and clinical communities, which interestingly tend to adopt person-first language following non-stigmatizing aims, given the negative associations with the label ‘autistic’. However, prominent autistic advocates and scholars have been vocal about their dislike of person-first language. As Sinclair says, no one seems bothered when they are described through positive labels – think about “handsome” or “brilliant” – but once we have decided to regard a feature as negative, we suddenly want to separate it from the person. By contrast, the identity-first approach proposes to regard the condition positively and at times as an integral part of one’s identity, thereby being more compatible with the notion of neurodiversity.
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Valentina Petrolini |
In the paper we delve deeper into both approaches to show that we can regard both of them as attempts to de-pathologize autism. We first show the person-first approach originates within self-advocacy and disability movements starting in the late 1970s, exactly as a way to avoid stigmatizing and ableist labels such as ‘disabled’ or ‘handicapped’. Yet, identity-first language arises precisely as a reaction to this solution. On this new interpretation, separating the condition from the person is not only impossible – as there is no person trapped inside the autistic person – but also a patronizing reminder that disabled people are people too. Despite the fact that they both aim at de-pathologizing autism, these two strategies take opposite metaphysical routes. While the person-first approach stresses the idea that a medical condition should not define a person, the identity-first approach regards one’s condition as an integral – and often positive – part of one’s identity (e.g., “autism is me”).
Things get even more complex if we look at the results of surveys and questionnaires that explore people’s attitudes and preferences towards these linguistic labels. One thing that we notice in the paper, for instance, is that studies conducted on English-speaking populations tend to show a preference for identity-first language in autistic adults and a preference for person-first language in family members and medical professionals. However, once we look at the (few) studies conducted with other linguistic communities, some interesting differences emerge. For instance, while autistic adults from France and Belgium express a preference for identity-first language, Dutch speakers show the opposite pattern. These results indicate that linguistic preferences are probably influenced by culture: different communities may perceive different labels as more or less stigmatizing, and/or they can vary in their exposure to neurodiversity approaches on social media and in popular culture. However, this issue is still wide open and we need more cross-cultural and cross-linguistic research before we can draw any general conclusion.
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Bianca Cepollaro |
Identity-first approaches to autism often go hand in hand with the reclamation of ‘autistic’, which counteracts pejorative uses of the term by underscoring overlooked advantages of the condition and reinforcing group identity against stigma (for a more detailed discussion, see our related article: “The Case of ‘Autistic’: Pejorative Uses and Reclamation”, forthcoming in Ergo. An Open Access Journal of Philosophy). At first glance, reclamation seems to be compatible with the identity-first approach only. Certain reclamatory acts clearly assume and promote this approach as they proudly employ the term ‘autistic’: e.g., ‘we are proud autistic women’. However, we also argue that under a broader understanding of reclamation, the person-first approach could also be interpreted as compatible with this linguistic practice.
A better understanding of how we use language to refer to mental health conditions, and to autism in particular, can reveal our conceptions of the condition and of the people who are
diagnosed with it, as well as the resources available to counteract the negative effects of certain labels. We thus take the first-person versus identity-first approach as one area where important questions about self-conception and stigma can arise and deserve further careful examination.