Challenging assumptions about wellness and illness through the lens of Mad Studies

Our entire environment is built upon assumptions about how someone is supposed to move and interact with/in the world. Although disability studies have been around for a long time, in recent years the field has distanced itself from the medical model of disability, in which people with disabilities are viewed as flawed and in need of cure, instead towards a social model of disability. In the social model of disability, an individual in a wheelchair is not the problem; rather, the problem is the building without a ramp and automatic doors. As a 2nd year PhD student of Dr. Patty Duncan in the Women, Gender, and Sexuality Studies Program at OSU, Lzz Johnk pursues questions posed by Mad Studies scholars, such as, what does it mean to think of Mad, neuroqueer, neurodivergent, and mentally disabled people as self-organizing political agents, instead of individuals who society must deal with to maintain order? The core of Lzz’s research consists of applying a genealogical lens to the root of Mad Studies, which is a field examining the lived experiences and culture surrounding individuals identifying as mentally ill, neurodiverse, mentally disabled, and/or Mad. From a white-dominated, Amerocentric perspective, Mad Studies has been around for ~10 years, although the field actually goes back much further, with its roots in the perspectives of people of color, and more specifically, women of color. Lzz explains, “we need to interrogate who gets to decide what constitutes Mad Studies.”

Framing the history of Mad Studies

Examining and interrogating the history of Mad Studies requires understanding the relationships within that history. The location and history of the institution provides framework for the context of the research being done within, as institutions are saturated in the history of the land. Specifically, what does it mean for a white, European settler at a land grant institution such as OSU to be working and researching in a field steeped in the lived experiences of Indigenous people and people of color? Much of the work being done in Mad Studies is limited to the perspectives of cis-masculine individuals and ignores the work of marginalized peoples.

We are all stigmatized to varying extents based on components of our identities, be it national identity, religion, gender, or social class, which is conceptually encompassed by a theory forwarded by Black and other feminists of colour known as intersectionality. The degree to which these stigmas overlap and compound, can effectively result in more acute and damaging marginalization. Historically, people of color and femme and/or gender-deviant people have been hyper-diagnosed as Mad (think of the stereotype of hysteria applied to women). As an example, in considering borderline personality disorder as discussed by writer Susanna Kaysen, Lzz asks, “where is the border-line? Why do women cross that line so often? That line has historically been set and upheld by white settler cis-masculine doctors who determine the boundaries of Madness and wellness. But, the closer you look at the line, the harder it is to define.”

Implementing change

One reason Lzz cites as motivation to return to the academy is to be part of the conversation to make real change in the lives of people identifying as Mad. Changes are being implemented at an unacceptably slow rate. However, Lzz’s research is not directly associated with generating tailored recommendations about health, and explains, “we should be really cautious about the people and institutions making recommendations, by asking what community they are coming from and what their intentions might be. The tendency of entire fields to broad-brush people, and to distill people’s identities into crude stereotypes that get turned against them in moments of vulnerability – as if it is remotely possible to categorize an individual’s whole life experience – is one reason why Mad and disabled people are so stigmatized in our culture.”

Lzz cites the work of Gloria Anzaldúa, a Chicana feminist, as being a critical influence on their wanting to pursue the study of Madness. Anzaldúa wrote and theorized mind-body differences embodying what gets pathologized as Madness or disability. Lzz relates how the work of Anzaldúa exposed them to the concept of navigating overlapping interstitial spaces – or “the space between things, where things don’t fit; falling between, but not quite fitting into binary systems of identity, such as gender.” In this sense, Mad and disabled people are continually finding ourselves in ambiguous terrain.

Why OSU?

Lzz completed their undergrad at Michigan State University in Cultural Anthropology with a certificate in Asian Studies, followed by completion of an MA at Eastern Michigan University in Women and Gender Studies. Lzz felt they could handle doctoral-level work, and also felt strongly that the institution they ended up pursuing a PhD at would need to embrace their Madness. About OSU, Lzz says, “the faculty in my program, in all of their various subfields, are really stellar. Even faculty who don’t necessarily position themselves within Mad Studies are supportive.”

Future directions

Lzz loves teaching and research and would like to pursue these endeavors after graduate school. They also enjoy community work and plan to be involved in outreach to young people who might need support in navigating their neuroqueerness, Madness, and/or mental illness. As someone who has experienced violent pathologization firsthand – fostering a sense of self-hatred instead of acceptance and celebration – Lzz feels that teaching can be one way to disrupt those violences and impact people’s lives in a tangible and meaningful way.

You will not want to miss our interview with Lzz on Sunday, September 16th at 7pm. Listen live on KBVR Corvallis 88.7 FM or stream live. Also, check us out on Apple Podcasts!

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