Autism and the Politics of Neurodiversity: Interview with Jodie Hare
Jodie Hare’s 2024 book Autism Is Not a Disease: The Politics of Neurodiversity, published by Verso Press, acts as an engaging and timely contribution to the discourse surrounding neurodiversity. Despite the increase in diagnoses of autism and other mental health conditions, there still exists a stigmatizing social and political climate that negatively impacts neurodivergent individuals.
In her work, Hare argues for a holistic model of disability, which she claims is integral for building a more equitable world for all neurodivergent individuals. She calls upon us to reimagine the conception of “normality” and reflect on what we can do as humans to create an inclusive ethics of care and compassion.
Hare was kind enough to accept my offer for an interview, which you can read below!
I was diagnosed earlier on in life, but in the introduction to your book, you discuss the difficulties with obtaining a diagnosis that you feel fully encapsulated your experiences, until finally receiving an autism diagnosis at age 23. Walk me through your initial reaction.
I think what came immediately after was a mixture of both relief and grief. Relief because it felt like I had a new framework that could shed light on so many of my experiences in a new way, but grief that came from wondering how different my life might have been if I’d had access to this knowledge about myself earlier on. There’s no guarantee it would have made anything easier, in many cases an early diagnosis only makes things harder for people, but I think it’s a natural thought to wonder about this anyway. I might have had the language to explain how it feels to move through the world as myself.
You talk about the feelings of social alienation you grappled with, especially in your higher education career, which I can relate to as a professor and scholar myself. What about that environment that you think contributed to that and how do you think your university managed concerns of the neurodivergent community?
I think any environment where I’m interacting with large amounts of people on a regular basis has the potential to bring out those feelings for me. I think in terms of studying at university, it’s often a time when most people are looking to figure out parts of their identity or decide on the next steps for their life anyway, so there’s a lot of self-doubt and internal questions going on at that time.
It’s been a few years since I’ve been at university, and I know that the department I was part of has since started asking questions about how they can better support neurodivergent people. Those conversations are being had. But whilst I was there, it was still only an initial topic of conversation; not many people (in my experience anyway) were talking about the experience of being neurodivergent in educational spaces. I was lucky to have some very supportive tutors who went above and beyond to help me gain access to accommodations and to offer me a regular hub of support — but I appreciate the rarity of such support. I was very lucky.
In the first chapter of your book, you discuss Judy Singer’s social model of disability; what do you think are the primary benefits of using this as a framework for the larger neurodiversity movement?
Whilst I absolutely understand why so much of the movement pushes for the social model of disability over the medical model, the social model is not without its limits, as it can overlook intrinsic challenges that persist beyond environmental barriers.
A more nuanced approach to understanding disability might attempt to balance both individual traits and societal factors, advocating for both accommodations and skill-building support without attempting to “cure” neurodivergence. For this reason, I really like Robert Chapman’s discussion of the Barnes value-neutral model — they talk about how this model recognizes the importance of external context in shaping well-being but also understands diverse experiences of disability as valid and valuable. It can help us expand our definition of “a good life.”
There are problematic aspects of labeling one as “high” and “low” functioning on the autism spectrum and how as someone typically put into the category of the former, you hold a certain amount of privilege, something that I have reckoned with as well. How did you navigate this?
I think it’s being conscious that my life as an autistic person is just one tiny picture of autism, I do not—and cannot—speak for all autistic people. And I don’t ever want to do so. A lot of people have been quite surprised by how much I quote or reference other people’s experiences and other people’s work in my book, but that was intentional. I had an opportunity to talk about the autistic community, and I wanted to show how many people are already sharing their stories and are already working to change the way we think about neurodiversity. If I have people’s attention for a couple of minutes and I can use that time to say, “Hey! Look how many kinds of autistic lives exist!” that feels worthwhile.
What do you see as the ultimate concern regarding the weaponization of language and labels attached to the neurodivergent experience?
I think language is a very powerful tool. I think it shapes the world we live in, and it shapes our understanding and perception of those around us. Weaponizing that language makes it possible to normalize the marginalization, othering, and abuse of certain groups of people.
The concept of “normalization” creates a harmful and socially constructed binary for neurodivergent individuals; what do you see as a way in which we can destabilize this notion?
Robert Chapman talks a lot about how much of the idea of a ‘normal’ human was created in service of capitalism. For that reason, I think we need to look very closely at who and what benefits from the binaries we’ve constructed; quite often, it is in service of a very small group of privileged individuals.
It requires work to look consistently at the structures around you and ask, “Who is this built for?” To constantly question, “Why is this considered ‘normal’?’ What does ‘normal’’ really mean, and who decides what falls under that term?”
In your second chapter, you conceive the neurodiversity campaign as one connected to abolition, discussing it in relation to policing and the criminal justice system. What do you think are tangible actions people working within that system can do to combat the mistreatment and abuse that so many neurodivergent folks face?
I always think this is a hard question to answer when the end goal is that these systems don’t exist — I don’t believe that reform is enough to fix these systems — but I understand reorganizing society for abolition takes time.
Going down that road might require comprehensive neurodiversity training, sensory-friendly environments, and accessible communication to become standard practice. I would also suggest expanding non-carceral alternatives, fostering partnerships with advocacy groups, centering neurodivergent voices in policy-making, and supporting neurodivergent people in creating their own crisis plans. In this instance, turning to the work of projects like Project LETS is invaluable.
The insidious nature of a capitalist-driven economy creates further discrimination and stigmatization; what are some liberatory practices that you see as beneficial for fighting against this?
There are so many thinkers who offer alternative systems to capitalism that it would be hard to summarise them all, but I think we can begin thinking about the possibilities behind things like a Universal Basic Income, workplace reform that prioritizes flexible working and deprioritises current definitions of productivity, mutual aid networks built by and for the communities they serve, access to free, life-long, inclusive education, promoting rest, and rejecting our tendencies to define a human being's success by what they “produce.”
There is a notion in certain political circles in the United States, specifically that intersectionality and critical race theory indoctrinate people into developing hatred toward the country, but how are those fields of study helpful for the neurodiversity movement?
These frameworks encourage a deeper understanding of the compounded challenges faced by individuals with overlapping identities. They can help us identify and address systemic inequalities in education, healthcare, and employment etc. They highlight how multiple forms of oppression intersect and allow us to target and dismantle all kinds of discriminatory practices, not just those faced by the least marginalized neurodivergent people. They can aid us in the creation of an inclusive movement.
In your last chapter, you situate hope as a useful mechanism for envisioning a future for the neurodiversity movement (which I agree with). What would you say is your ultimate hope with this in mind?
I don’t love thinking in ultimates because of how much the world shifts constantly, but I think any future in which neurodivergent and disabled people are liberated from the systems under which they are currently subjected to ableism and other forms of discrimination is a future worth striving for. To imagine us all as free from neuronormativity and the capitalist ideas of “normal” and “non-normal” brains and lives is a future I’d like to be part of.
If you would like to purchase a copy of Autism Is Not a Disease: The Politics of Neurodiversity, you can do so at Verso Books or your local independent bookstore. For more information on Jodie Hare and her work, visit her website.