By Justine Trinh
For five and a half years, I was in two different clinical trials to treat my severe eczema. After the violence of treatment, this was the first time in my life that I am clear of any rashes, swelling, and blisters; my drug representatives would go as far as to say “cured” without regard to the fact that eczema is a permanent chronic condition. I have made peace that today I might be okay, but tomorrow I could experience a flare up that makes it difficult for me to do everyday tasks.
I am not “cured,” nor do I need to be “cured.” Yet according to my drug representative, I am “cured” in this aspect of my life, and so she found something else that needs to be “cured”: my asexuality. As I was telling her about my future wedding, she said to me, “There might be something wrong with you because you don’t want to have sex. How is your boyfriend okay with this? You should see a specialist.” This was not the first time my sex life (or the lack of such) was brought up, but the other times were in relation to the study, and it was okay that I was not having sex as I could not get pregnant while participating in the study or risk access to the medication. However, now that my eczema was “cured,” my drug representative determined I was now worthy of such intimacy.
I share this story because it highlights how our common societal notion of intimacy is defined in heteronormative terms as only sex and romantic love. This narrow idea of intimacy excludes and stigmatizes any form of intimacy that does not fit the mold, and this affects the kind of medical and social treatment we receive. As a result, my asexuality was treated as an ailment rather than accepted.
However, Alice Wong’s edited anthology, Disability Intimacy: Essays on Love, Care, and Desire shows that intimacy is more than just sex and romantic love, even though it can encompass both of those ideas. In her introduction, Wong writes, “Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. Intimacy is about relationships within a person’s self, with others, with communities, with nature, and beyond.” This collection challenges the notion that disabled bodies aren’t desirable and shows the manifold ways they can be desired while also showing alternative forms of intimacy and desire. Desire can be lust, but it can also be the yearning to be seen, self-love, or the wanting to be a mother. Divided into 4 sections, “Love and Care,” “Pleasure and Desire,” “Creativity and Power,” and “Everything and Everywhere,” Wong curates a collection of essays, photo essays, poetry, and erotica that demonstrate a wide range “of the dreams, fantasies, and deeply personal realities.”
While every piece in this collection is thought-provoking (and I wish I could write about all of them), I was drawn to several in particular. The first was “To the You that Used to Be Home: An Anatomy of a Disabled Heartbreak” by Mia Mingus. In the essay, she shows how“heartbreak comes in many forms, just as love does.” In the common imagination, heartbreak is thought to be the result of the end of a romantic relationship that has left us shattered with emotional pain. There are a million songs, like Taylor Swift’s “All Too Well,” that speak to how a breakup can leave us paralyzed and hurt. But the same feelings of heartbreak can also come from a broken friendship, community, or family, and Mingus’ work testifies to the messiness of being human as we can intentionally and unintentionally hurt the ones we care about. I love this line Mingus ends her piece with: “I am still your home, even though you are not mine.” It shows that we can still love and care for someone even after our relationship ends and how intimacy with a person can change.
Another piece I was drawn to was “The Most Valuable Thing I Can Teach My Kid Is How to Be Lazy” by Elliot Kukla. Our American society prioritizes productivity while shunning and stigmatizing laziness. This stigmatization of laziness is connected to racism, class and wealth, ability, and injustice as if everyone can pick themselves by their bootstraps in a world that marginalizes difference. Kukla writes, “When we call people lazy (including ourselves), we are often pointing out that they’re too tired and weak to be productive, while often simultaneously accusing them of faking feebleness to get out of work for malevolent purposes.” Often, I find myself berating myself when I am not doing anything as I could read another chapter of that dense academic text I keep avoiding, answer another student email, grade student work, write, etc., when in reality, I am pulling myself apart at the seams to keep up with academic demands. Instead, Kukla advocates for laziness as we all need rest, and rest should not be just a privilege or luxury. Laziness is not sloth but also enjoyment. I am tired. The world outside makes me tired, and I want to rest.
Disability Intimacy made me feel seen. I felt less alone and alienated in my experience with intimacy and chronic illness. I felt validated in a medical system that often diagnosed me as a problem whether that be for my sexuality or illness. This book also simultaneously showed me new perspectives. I could not put this book down as I wanted to know more and find solace in a world that constantly casts me as different. Although Wong passed away last year, her work is impactful as she was making these stories visible in a world that wants to erase these 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.