Yewande Pearse on the Practice of Equitable Science and the Neurodiversity Paradigm 

Photography by Se Young Au

My friend Cedric Tai (aka @fakingprofessionalism) recently sent me a copy of a zine they had made, titled an Accessible ADHD Guide for / by Artists. I am a Neuroscientist, they are an artist who identifies as neurodivergent, and we were both curious about each other’s work.

The initial intention of our conversation was for me to offer them some insight into the neurobiology of attention deficit hyperactivity disorder (ADHD) and how it’s being studied, and for them to share with me their creative practice around the topic. Through our ongoing dialogue, I began to develop a new awareness of the concept of neurodiversity and found myself on this unexpected journey of self-discovery about my own brain, and on the other end of the phone with a psychiatrist, looking for answers.

Let’s start defining our terms because the word "neurodiversity" is being used a lot these days, and not always correctly. In their essay "You are Using the Word 'Neurodiversity' Wrong," Jesse Meadows, a writer and digital artist focused on disability, queerness, and culture, defines neurodiversity as “a paradigm, a lens through which we look at human neurology, and it stands in opposition to the pathology paradigm.” Elaborating, Meadows (aka @queervengence) writes, “The pathology paradigm says: there is a normal, healthy brain and an abnormal, unhealthy brain. People with abnormal brains have something wrong with them and need diagnosis and treatment to become more normal. The neurodiversity paradigm says: there is no such thing as a normal brain. Variation in neurology is natural, and none is more right or wrong than another.”

This framework goes against everything I’ve been taught. My whole research career is based on pathology. Right now, I’m attempting to grow brain organoids that resemble Alzheimer’s disease. Brain organoids are essentially pieces of lab-grown brain tissue from human cells that scientists can use as a model to study biological differences between “normal” and “abnormal” brains. Brain organoids are also used to study the neurological basis of neurocognitive conditions such as autism. However, neu- rodiversity, which doesn’t require a diagnosis but encapsulates autism (as well as dyslexia, ADHD, and obsessive compulsive disorder [OCD]) isn't a biological term—it’s a political one. It’s not about looking for causes or cures; it’s about acceptance and accommodation.

“For me, equity describes a state of being where social identity categories like race don’t determine how a person or group is impacted by external powers.”

I’ve had to pause to think this through. While the research methodologies I use make sense in the context of neurodegenerative diseases, it’s become clear to me that adhering to the neurodiversity paradigm means rethinking how conditions like autism are studied. Unlike the normal/abnormal binary, neurodiversity offers the possibility for alternative methodologies to understanding the natural variation in the human genome. As scientists, we often give ourselves the power to define what we see and we don’t always do that in the most equitable way. For me, equity describes a state of being where social identity categories like race don't determine how a person or group is impacted by external powers. Science is powerful, and although most scientists don’t set out to cause harm, equity is an elusive issue that many do not consider.

Awake to Woke to Work, a publication by the nonprofit organization Equity in the Center, describes how “the attainment of race equity [in the Social Sector] requires us to examine all four levels on which racism operates (personal, interpersonal, institutional, and structural), recognize our role in enduring inequities, and commit ourselves to change.” I think the same applies to equity in science, whether we are talking about race, class, gender—or neurological differences. While still far from perfect, the social sciences are finding ways to embed equity in the research process, but what about the natural sciences, where you see a sample, not a face? Some scientists are taking a more critical approach that bridges the gap between researchers and the neurodiversity movement. Earlier this year, the Centre for Biomedical Ethics and Law in Belgium published a paper proposing a more holistic and inclusive approach to brain organoid research in Autism Spectrum Disorder (ASD), which included “a continual reconceptualization of illness, impairment, disability, behavior, and person.”

While I agree with statements like this, I also see something bigger than just how research is being done. Cara Page, a Black Queer Feminist cultural/memory worker, curator, and organizer who is working to dismantle the historical and contemporary exploitative practices and abuses of the Medical Industrial Complex (MIC), describes how this medical model is based on colonial ideologies of what constitutes normality. One consequence of this has been a top-down approach in which natural variations in cognitive traits have been pathologized with diagnostic labels. For me, this is where the nuance lies. Sometimes, these labels lead to stigma, shame, and ultimately harm, but a formal diagnosis can also be an entry point to care (even survival) and create solidarity and community. In their post “PSA from the actual coiner of ‘neurodivergent,’” Kassiane Asasumasu, a multiply neurodivergent Hapa (biracial Asian) longtime autistic activist wrote, “Neurodivergent just means a brain that diverges. Autistic people. ADHD people. People with learning disabilities. Epileptic people. People with mental illnesses. People with MS or Parkinsons or apraxia or cerebral palsy or dyspraxia or no specific diagnosis but wonky lateralization or something. It is not another damn tool of exclusion. It is specifically a tool of inclusion.” The neurobiology of ADHD is contentious (as one should expect given the continuum of neurological function amongst us), but Parkinson’s disease attacks the brain in a measurable way. If neurodiversity can include both ADHD and Parkinson’s disease, I wonder how to balance depathologizing of brains (especially in kids who are still forming their sense of self) with how—diagnoses and prescriptions aside—neurobiological explanations of a person’s thoughts and feelings can sometimes be psychologically and socially helpful while serving to support their identity.

In writing this article I have two instincts. The scientist in me wants to use the authority of my platform to share information that might otherwise not be taken seriously, but the curious part of me wants to take a back seat, listen more, and resist using neuroscience to “prove” the existence of something, when that's maybe not what the community is asking for. In the end, I don’t think it’s up to scientists to negotiate the neurodiversity paradigm—it’s up to the individual—but we do have a responsibility to carry out this work in equitable ways, as does the rest of the MIC. To me, that means thinking a little bit harder about how I, as an individual, have internalized “scientific normality” and considering how research can best support discussions led by those in the neurodiversity community. There is tremendous value in studying differences between brains, but diversity doesn’t need to be so quickly categorized. These differences simply represent “alternative biological ways of being.”

My journey into understanding neurodiversity has taken me down many rabbit holes: ADHD and the function of productivity in capitalism, neurodiversity and intersectionality, scientific expertise vs. the expertise gathered from lived experiences—the list goes on. The one I find myself emerging from here is the medical vs. social model of disability, which asks, “Where is disability located? Is it located within individuals or within society?” Dr. Camilla Pang, a postdoctoral scientist and author of the 2020 book Explaining Humans: What Science CanTeach Us About Life, Love, and Relationships is on the autistic spectrum and has ADHD. Like many, she prefers “mental health variances” to “disorders” and when asked about neurodiversity in an interview, replied, “What you find with these mental health variances is that a lot of the struggles people have are mainly due to the intolerances of their environment.” “If left alone,” she continues, “I’m normal. I’m fine. Happy as Larry. But if I had to sit at my desk in a certain way all day, I’d go absolutely nuts. I actually sit under my desk—I’ve got a standing desk—and I read there. The people at my work are very accepting of that. So, what I’d want everyone to know about neurodiversity is to just accept and embrace it.” I see exactly where Pang is coming from and would also add that whenever we associate a person's ability to function with their inherent worth, we run the risk of finding ourselves perpetuating father-of-eugenics Francis Galton’s “idealized fantastical construction” of what it means to be a useful human. When I first thought about this piece, I went straight to the intersection of neuroplasticity and neurodiversity because I thought it would be cool and interesting. The truth is, I didn’t find much there, but it did leave me with a final thought. If it is society that makes some people unable to function, then achieving equity would require a great deal of unlearning. This led me to thinking about the concept of neuroplasticity: the ability of the brain to rewire itself through the growth and the reorganization of neural networks. If our brains are soft-wired, our society and the environments within it should be, too.●

Dr. Yewande Pearse is a London-born, Los Angeles-based neuroscientist and science communicator who has dedicated the past fifteen years to understanding the inner workings of the brain. Outside of the lab, her work as an advocate for science accessibility encompasses a variety of projects which span live events, written works, podcasts, talks, and videos, including hosting a monthly radio show called Sound Science on LA’s independent Dublab radio, First Fridays Connected with the Natural History Museum in LA, and the YouTube series “Music on My Mind” with John Legend and Headspace.