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Caroline Smith
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Alice Wong in August 2022.(Eddie Hernandez Photography)
Wong —who has edited multiple anthologies, including Disability Visibility and Low and Slow, a series of food writing by disabled people — described working on this anthology in the aftermath of that hospitalization as a “critical lifeline just like the breaths of air from my ventilator and liquid nutrition flowing into my feeding tube.”
The anthology’s first-person essays and poems reflect on friendships, parent-child bonds, romantic and sexual relationships and disability communities. They cherish the love and care their authors give to others and themselves. They consider the sensation of touch from loved ones and health care workers alike. They bask in what it means to feel truly seen and celebrate the personal and collective change that intimacy creates.
Wong dedicates the anthology to herself, writing, “I love you very much. You deserve everything you desire.”
Wong spoke with KQED Forum’s Mina Kim about her hospitalization and why she focused this collection on intimacy. Wong describes disabled persons’ stories of “love, care and desire” as necessary for combatting long-oversimplified narratives —and for expanding our collective understanding of what intimacy really means.
This interview has been edited for length and clarity.
Mina Kim: What did it mean to you to edit this anthology in the aftermath of hospitalization?
Alice Wong: I turned 50 last month, and I’ve been reflecting a lot about the past. It’s amazing how much I have changed in the last 10 years and even in the last two years when Disability Intimacy first came about. My memories of what happened two years ago have been very hazy; time folded like a piece of origami into an abstract alien shape. The book proposal for Disability Intimacy was accepted in early 2022 before I was hospitalized that summer, which turned out to be the most horrific and traumatic time of my life. …
When I became seriously sick that summer, almost dying multiple times, I ended up with a radically different body. I experienced such gentle waves of community care and love. I was at a very low point and needed so much help. My friendships became more intimate and that deepened my understanding of intimacy. …
Working on this book was such a joy and a part of my healing process. Being creative, collaborating with others, and building something beautiful together gives me life. Editing this collection and the “Low and Slow” series for Eater.com gave me something to focus on; it was a lifeline in the midst of pain and suffering. Overall, it’s brought me a sense of gratitude that I’m still alive and have the privilege to work with so many talented people.
What did you find when you Googled ‘disability intimacy’?
The Google search, if that is a barometer of mainstream social attitudes and values, turned up articles on stereotypes, stigmas, sexuality, sexual abuse and sexual dysfunction. Stories about and by disabled people on “what it’s like” to date, have sex or be in a relationship abounded. I rolled my eyes so hard at them because it’s so basic, ableist, and vanilla, if you know what I mean.
Disabled people are so innovative and creative in the ways they express intimacy because we live in an ableist world with such narrow, conventional ideas of intimacy. To me, intimacy is more than sex or romantic love. Intimacy is about relationships within a person’s self, with others, with communities, with nature and beyond. Intimacy is an ever-expanding universe composed of a myriad of heavenly bodies. It’s my hope that readers of my anthology will question their own ideas of intimacy and their relationships with it.
What’s your relationship with your voice today?
So there’s the physical voice, speech and sounds we make with our body, and voice in the broader sense, about your perspective on the world. I detest advocates who say they are “a voice for the voiceless” because everyone has a voice; it just might be in a different medium, and it’s our responsibility, if we actually care about diversity, to make an effort to listen and meet people where they are. And this is especially true for radio. I continue a voice through my writing as a columnist for Teen Vogue and other projects, but my physical voice no longer exists since I now have a tracheostomy in my throat that is connected to a ventilator that I am dependent on 24/7.
I miss my physical voice. I was a really funny, witty speaking person. I wish you could have known me a few years ago, Mina, but I can’t go back; I can only go forward in this disabled cyborg body that is still alive and kicking butt. The way I express myself will never be the same. …
I would characterize my relationship to voice as fraught. I’m thankful to live in an era where I have an array of assistive technologies I can choose from — and at the same time, I struggle being heard, seen, and respected in my new non-speaking corporeal form. In one-on-one conversations, there is so much I want to say, and most of my friends are patient with me when I type a response, but there are times it takes minutes. I worry about them losing interest while they wait for me as I frantically type. My conversations have fundamentally changed. I find myself saying less, skipping certain parts of what I want to say, and becoming more succinct. …
I have lots of hot wisdom to drop, and I am determined to express myself fully without pressure. I still have a voice; I still have my words, but I have to undo the feeling of resentment of my present state at the way I present myself to the world that is shaped by forces beyond my control.
On her book’s dedication to herself.
I have a gigantic ego and am full of confidence about a lot of things, but I am also a puddle of insecurities, loneliness and self-doubt. Growing up disabled, I was made to feel a lot of shame and marginalized to the point where I questioned whether I belonged in many spaces. I think a lot of people feel that way whether they are disabled or not. It’s easier for me to love others than myself, so I just wanted to declare how much I love me and how I want all of my dreams to come true. Because let me tell you, Mina, I have plans to conquer the world. Insert evil laugh, ha ha ha.
On her ‘intimate partnership’ with death.
I turned 50 recently, and it was a real head trip. For Time magazine, I wrote a piece reflecting on all I have gone through and what my uncertain future holds. Doctors told my parents I wouldn’t live past 18, so I grew up without any dreams or images of a grown-up Alice. I could not see a future for myself, so I had to make one on my own. I had to will a pathway into existence.
In my memoir, Year of the Tiger, I wrote an essay about my first-grade teacher, Mrs. Shrock. In a note to me several years ago, she remembered one day in class, I asked her if I was going to die. And she said no, not now. I had no memory of that, but as I am typing this answer, I am tearing up thinking about it. Such heavy existential questions and fears preoccupied little 6-year-old Alice’s head. Death has always been a shadowy presence as someone with a progressive neuromuscular disability.
I have gone through lots of scary medical moments in my life, most recently this past January when I went to the ER. I was shocked to see so many health care providers without a mask or only wearing a blue surgical one that does not protect from airborne pathogens as effectively as an N95 mask. … It’s exhausting to be sick or disabled and drives me wild that many health care settings do not have mask mandates even though immunocompromised and high-risk patients have to go in for treatment. We’re still in a pandemic, even though our elected leaders would like us to forget that. No one should risk their lives when seeking health care.
The ER visit resulted in a one-day stay in the ICU, where I did not receive adequate pain relief during a procedure, and my communication device was not allowed in the room. I was powerless, crying nonstop, and unable to tell the nurses and technicians what was wrong. It was terrifying, and moments like these, where I am vulnerable and treated less than human, I wonder if I will die.
Not to be a downer for your listeners, but I think about death a lot, and it’s a constant in my life, a dance partner that takes me on a few too many dips and twirls for my liking. Death is an intimate partner of mine, and it makes me appreciate life. I make the most out of every day, celebrating, loving, and caring for my friends, family, and two cats, Bert and Ernie. Even though I am in a race against time, I am having as much fun as I can every single day, such as this conversation with you.
