By Justine Trinh
We all go to high school. Many of our ideas of the institution come from mainstream media like Mean Girls, To All the Boys I Loved Before, and 10 Things I Hate About You. Growing up consuming these movies, I wanted to do all the “normal” high school activities, like going to football games (which I later learned I did not like), clubs, and school dances like homecoming and prom. However, engaging in these activities can also be a way to pass as normal when you have a disability. Bethany Mangle’s Conditions of a Heart explores what it means to navigate high school with a disability when all these “usual” activities are taken away.
Brynn Kwan seemingly has the perfect high school experience. She is the junior prom queen, class president, co-chair of the student council, and head of the yearbook committee. However, Brynn is hiding the fact that she has Ehlers-Danlos syndrome from everyone because she does not want to be seen as different or an attention seeker. But after she tries to break up a fight at a pep rally, she is accused of and punished for being involved in the fight she tried to stop with a week of suspension and being barred from extracurriculars and senior prom. After putting all her energy into maintaining her “perfect” persona, Bryn suddenly finds that she is “no one.” She is forced to reflect on who she is away from this well-crafted high school façade and learn how to be herself.
I am really impressed with how Mangle portrays the disabled experience within high school as her descriptions accurately encapsulate how I felt in high school as a disabled person. While I do not have the same disability as Brynn, I can understand the desire to fit in in an environment of people who do not understand what it is like to be sick. Mangle is able to articulate the experience in a way that allows her reader to understand these feelings. There is a moment in which Brynn yells at her sister in frustration, “You have no idea how people look at you when you’re different… I was just the pity invite to every party and the sad loser with no friends. At least now I’m popular! I’m normal! I’m so fucking normal.” Brynn’s sister, Eliza, cannot understand what Brynn is going through because she is not at the receiving end of the “pity” Brynn experiences. Before her “perfect” persona, Brynn is defined by her disability and treated differently. This is so dehumanizing because she is not seen as Brynn but rather for her Ehlers-Danlos. It is only after she crafts her persona that she becomes “popular” and “normal,” but this method of passing still denies Brynn personhood.
Brynn has to explain her experience to her able-bodied sister over and over again, yet Eliza still accuses her of doing it for attention. No one wants to be disabled or sick, and yet this accusation is a common one. Mangle shows that this is not the case with the many instances that wear her out. Similar to Brynn, Mangle in the author’s note talks about what body parts bring her pain. Even going to the doctor’s is a hassle as she has to constantly explain her diagnosis to them. While she is the expert of her own body because she is the one who is actually experiencing it, the doctor is still seen as the authority figure who dismisses her disorder as “the thing all those girls are diagnosing themselves with on the internet.” Additionally, throughout the narrative, Brynn discusses the challenges living with Ehlers-Danlos and what she had to give up to survive. While softball, high heels, and rollercoasters may seem trivial to the average person, these activities are taken for granted and part of the everyday experience that someone like Brynn cannot easily engage in. Speaking from experience, being sick is tiring. I have to plan my life around treatment and doctor’s appointments while still being a Ph.D. student (and that comes with its own trials and tribulations). Why would anyone choose this life to be an attention seeker?
There are moments in the novel in which Brynn is pushed to her limits and wants to quit, and that is so relatable. One of the most striking scenes is when Brynn explodes from everything that is going on. She is suspended and is unable to do the normative high school activities; her mother and sister cannot truly understand what is going on or why she wants to quit; and her ex-boyfriend, Oliver, hates her for hiding the truth from him. She crumbles under pressure and wants to give up. Within mainstream society, there is an expectation that someone with disabilities must overcome the challenges associated with being disabled and they are an inspiration to able-bodied people (disability rights activist Stella Young calls this objectification “inspiration porn”). As a result, it is unfathomable when someone with a disability wants to quit from being worn down by the oppressive systems that see them as nothing more than their disability. But Mangle chooses to include this scene where Brynn, in a fit of rage, rips the foam out of her knee pillow. While on the outside looking in, it seems like Brynn is engaging in a destructive fit, in actuality, she is asserting what she wants and demanding that people understand why she wants to quit.
Many teenagers do not know what it is like to be sick or disabled, but Conditions of a Heart portrays such a genuine description of one experience of what it is like. Mangle accurately captures the frustration of navigating high school and the complex medical industry and does not shy away from the bad moments to convey a genuine disabled experience. As the author’s note states, Brynn’s story is reflective of Mangle’s “personal experiences with subtype of Ehlers-Danlos and other disorders,” and “not meant to be fully representative of these conditions.” Yet this is a kind of representation that is needed. I appreciate Mangle’s honesty within her writing and her willingness to share. If there were more books like hers that showcased some of these struggles, I would not have felt so alone or different with my own disability in high school despite the differences in our experiences.
Justine Trinh (she/hers) is an ethnic studies instructor at Butte College. She currently serves as
book club leader on the board of Soapberry Review, a journal for reviews of Asian
American literature. Her research interests include critical refugee studies, memory studies,
family and trauma, and forced departure and disownment.