The Deficit View and Its Critics, Janette Dinishak
Review by Nadia Matveeva
Much of neuroscience, especially pop neuroscience is fixated on the fixing, treating, or curing of disease, illness, and disability. Language surrounding the supposed healing of these traits funds grants and allows neuroscientists to be gods in the public eye. I think it is worth interrogating why we do this research and how we talk about those we “treat”, as it can make clear some intrinsic biases that plague our pursuit of knowledge concerning these traits.
This article takes autism as a case study in expanding our understanding of the deficit view. The deficit view states that some disability research is done solely “in terms of … perceived deficiencies, dysfunctions, problems, needs, and limitations” (Dinishak). Some key ideas baked into this concept are lack, deficit, deviation, and pathologizing, all of which work together to delineate groups into “normal” and “abnormal”, and prescribe value judgements to certain traits. Much like phrenology and fMRI (in fact, much autism data is based on fMRI), these definitions serve an arbitrary binary supporting those in power. This is problematic because it makes assumptions about autistic people’s feelings and actions, creates an unattainable standard of what is valued, assumes autistic people are suffering due to their traits, and it biases researchers to find so-called negative differences when there may not be. It is also dehumanizing, and impedes our progress in understanding autism by obscuring what actual autistic people experience. A few examples I liked were:
- Eye contact. Researchers assume autistic people avoid eye contact because they are antisocial, when in reality some studies find that eye contact is simply profoundly uncomfortable for autistic individuals. This is one example of misunderstanding the autistic experience.
- Empathy and dehumanization. Framing autistic people as having an empathy deficit can lead to dehumanizing autistic people, supporting the collective idea that autistic people are a different kind of human or lacking in what makes a “normal” human.
- Outperformance. Whether an autistic person outperforms a neurotypical person on a psychological test or not, the result is framed as a “byproduct of a deficiency”. In this way, we are biased against neurodiverse people in our research.
Neuroscience is involved with the autistic community, for better or for worse. Much of the animal based neuroscience research I know of is concerned with identifying genes that cause autism and using them to find “cures” or “treatment”. Baked into this research is the deficit view, the value judgements, and the ignorance of the real autistic experience. Did these researchers ask the autistic community if this research was wanted? Does their research hold assumptions about what autistic people actually feel in social situations or sensory environments? Are their anti-social rats and zebrafish actually recapitulating the human experience of autism? As a non-autistic person, I won’t make assumptions about the answers to these questions, but I do believe this relates to the superiority neuroscience feels as a field, and the power and weight given to science over the social or biosocial.
As the field moves forward, there must be discussion with autistic individuals — and any disabled individual that is centered in research — concerning how and why the research is being done. Research subscribing to the deficit view is detrimental to the cultural view of these disabilities or conditions, and with the amount of trust the public places in science, it is our responsibility to confront and change our internal biases.
P.S. This article also has some good discussions on bio-essentialism and male v.s. female differences.
Image from https://brainwave.watch/autism-infinity-symbol/