[Feature] Disability Rights with Monster Girls: Why Machi doesn’t need a “cure”

At age five, I was diagnosed with Becker Muscular Dystrophy, a progressive muscular condition that mainly impacts my legs. The process was slow, providing me the opportunity to confront my identity as a person with a disability. While my family fretted over my diagnosis, I felt confused. My parents emphasized that I had to respect my physical limitations, to avoid overexertion, or my condition would worsen. “Did my body not work like everyone else’s?” I wondered, piquing both my curiosity and my concern. Drawn by these feelings, I became compelled to study Duchenne Muscular Dystrophy, a condition similar to my own, and pursue a PhD in biomedical science.

The Winter 2017 anime Interviews with Monster Girls strengthened my conviction to study conditions like my own. This show introduces us to three high school girls—Machi, Hikari, and Yuki—who exist at an intersection between disability and being female. As demi-humans with unusual biological conditions, they strive to understand their biology and their place in the world. Monster Girls explores this interest through their interactions with their biology teacher, Tetsuo Takahashi.  Takahashi helps these three fit into the high school’s environment while gaining an understanding of their respective conditions. As a biologist, Takahashi tries to understand their conditions from the perspective of his field.

Three girls in school uniforms: A blonde girl holds the hands of a green-haired girl and a girl with her head in her arms as they run down a hallway

As a person with a disability myself, and one who has experience having a disability in both the US and Japan, I’ve had a front-row seat to the way both countries aim for accessibility for students with disabilities (a description that matches Machi, Hikari, and Yuki). Thanks to the Americans with Disabilities Act, the U.S. arguably has the best accessibility in the world, though it is still far from perfect. Japan’s accessibility is similarly good, but with perhaps even more caveats. Though the depictions of disability on Interviews may seem rudimentary, they do accurately capture the seemingly basic accommodations that high schools neglect to provide.

An especially resonant example: one day, Takahashi takes Machi, an honors student passionate about her studies, to meet his classmate, now a physics professor. On her first visit to the local university, Machi is in awe of these new surroundings. In the electrifying tenth episode, Machi learns about the science underlying her condition as a dullahan from physics professor Souma (below).

In a thoughtful gesture, Souma crouches to look at Machi’s eye level before introducing himself. It may seem disrespectful, but eye contact, especially in this context, is comforting. Inspired by this exchange, Machi decrees that she will become a researcher focused on dullahans. Through Machi’s efforts to understand her condition from a scientific perspective, the viewer witnesses an empowering image that science can and must include marginalized peoples.

A man in business casual stands at a whiteboard with unreadable text, looking over his shoulder at a dark-haired man and a person with a green flame for a head (shown from behind)

Monster Girls uses visual cues to indicate such an inclusive scientific environment. Talking with Takahashi after the lecture, she describes it as fun, as her eyes brim with excitement. A shot of Machi smiling at the end of the episode (below) highlights her newfound passion for studying science, which serves to usurp the elitist assumption that scientists are driven solely by a quest for knowledge free of emotions.

Through this lecture, Souma captures Machi’s imagination. He explains that Machi’s condition may warp time and space, leading Machi to wonder how her condition exists within science. Through this imaginative scene, she plays the part of a scientist, trying to answer important questions while pondering the connection between her head and her body.

Often, science is considered entirely “logical,” but such a perception comes from a sense of elitism that lends the bulk of the scientific community’s support to heteronormative men. Machi’s cerebral play serves to further disrupt this problematic narrative. When Machi says that she would like to pursue science, her curiosity hearkens back to her encounters with Takahashi throughout much of the series.

A dullahan girl holds her head in her hands; she is smiling; a blue flame comes out of her neck

Though some of her concerns, like holding her head safely, seem more tied to accessibility, they also represent scientific inquiry. It’s necessary to understand how your body and your needs can be integrated into your surroundings through creative problem-solving. I personally am prone to tripping—“clumsiness”—because I struggle with knee extension and stepping over objects. So I tend to select a path based on my particular challenges. Such problem-solving is the bread and butter of science.

However, true accessibility provides an inclusive environment for a person with a disability beyond physical accessibility; the inclusion of ramps or elevators, for example, is only one part of accessibility. In a similar way, accessibility is like science because it requires inquiry and solving complex challenges. This episode highlights how both accessibility and the physics of dullahans come together in Machi’s quest for self-actualization.

At the end of Episode 10, Machi proclaims her interest in science as a means to better understand being a dullahan. Through this process, she can better appreciate her presence in the world, and how her body works. However, this interest is logically the step before making the effort to “cure” being a dullahan; once the medical condition is understood, it can be eliminated, or so biomedical science tends to operate. This notion flies in the face of accepting people as they are—a key component of accessibility and (by corollary) disability rights—without forcing them to change.

A man in glasses and business casual looks at something off-screen, hand touched thoughtfully to his chin; behind him, a girl carrying her head and a man in a tracksuit jacket watch him

The problem lies with the goal of “curing.” As a PhD, I am engaged in work that technically goes toward curing Duchenne Muscular Dystrophy, a condition similar to my own. However, cognizant of the problems inherent in seeking to “cure” disorders, I am insistent on developing treatments that patients can use if they desire. As a person from outside the typical purview of science, I want to change how science is performed. The goal becomes helping patients alleviate symptoms, if they desire, that can get in the way of their life rather than providing an outright “cure.” As Takahashi puts it, even if science could provide that cure, it would still feel wrong for Machi to be forced to change to meet societal expectations.

If I were to give advice to Machi, should she continue on her path, I would tell her to use her knowledge of being a dullahan to help further the understanding of the condition in order to aid dullahans, rather than seeking to cure them. Even with these words, it is a fundamental contradiction to aim to uphold disability rights while potentially supporting the idea that persons with disabilities must change themselves—Machi with dullahans, myself with studying muscular disorders.

Science is an institution that includes its own system of oppression, meaning that as it influences people, it is also influenced by the people in the system. Much like myself, Machi is aiming to participate in this system that may be biased against her, especially with the emphasis in biomedical research on finding cures for disorders. But there are also systemic barriers she could run into, such as lab spaces not being equipped for people whose heads are separate from their bodies. Imagine holding your head while running an electric current through a gel!

In spite of these many problems, by participating in science, Machi can change the motivations employed in trying to understand disability and work to influence others around her. This is why it is so important to break down the elitism of science: to guide science to become more inclusive and to improve research itself. As a graduate student with a disability, I sincerely hope for more empowering representations of women in science like Machi.

 

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Zeldaru is a Pakistani-American with a neuromuscular condition who lives in Oregon.  When he’s not working on his PhD in bioengineering, he enjoys watching anime, attempting writing novels, and employing the most arid humor known to mankind.

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  • rugose-appendage

    I think the theme of “understand disabled people, rather than seeking to cure them” comes up in other places in Interviews. Conflicts like Yuki the snow woman being gossiped about, or her fear of accidentally creating a deadly ice blast were all solved by being willing to talk about disability rather than hiding it. Yuki felt better from having people to talk to, and it led to practical things happening which helped her too. I thought that was great, because it fitted my experience of talking about disability – that it can do a lot to make you feel better, and can lead to adjustments.

  • rugose-appendage

    Can’t say what the author means, but I can give an example of how medicine can pursue goals besides curing disability. When people talk about a cure they usually mean that the underlying biological abnormality gets fixed. A second thing medicine can do is address the functional limitations created by the biological abnormality/difference however. A wheelchair is an obvious example of this – a wheelchair doesn’t fix the biological abnormality/difference which prevents a person walking, but will allow them to mobilise. A third thing medicine can do is

  • rugose-appendage

    Addressing how limitations affect people’s social role (called “handicap” in the medical jargon) is done less often by health care professionals than than the other two in my experience. But they do do it a bit. I’ve had doctors who talked to me about what I found challenging, then suggested what my University could do to address its effect on my study. The implementation of those changes tends to involves the law, charities and political pressure however.

    I don’t think basic science has much to contribute to the study of handicap. There is a lot science can contribute though. For example I think there’s a good scientific literature about how to teach children with specific learning difficulties. I’d like more research to be done about how disabled people become handicapped, and what could be done about it.