You worked on Brilliant Imperfection for a long time—13 years? Can you talk about your writing process and the specific ways you feel it was a queer crip writing process? (If you do think that.)
I started my writing life as a poet and wrote poems for a decade and a half before I turned to creative nonfiction. Consequently, I write prose as if it were poetry—with a lot of attention to each word, to sound and rhythm, to image and metaphor. I write in many layers, spending an immense amount of time revising. Both my poems and my nonfiction, and all the hybrids between the two, start with questions. I work my way toward answers or sometimes more questions. Even at my fastest, I write like the proverbial tortoise.
There are a bunch of crip realities that shape my writing practice. Because of how my hands move, I type slowly and write longhand even more slowly, meaning it takes me a long time to put words on paper or a computer screen. I love poetry partly because of its economy of words. I’m also quite hard on myself for how slowly my entire writing process moves. My shame is undoubtedly connected to how I’ve internalized ableism, the capitalist drive toward productivity, and all the ways I’ve been harassed, taunted, demeaned for my tremoring hands.
And then there’s the specific project of Brilliant Imperfection. Taking on cure and diagnosis pushed me to the edges of what I could do as a writer. I needed so much time to figure out which stories I wanted to tell and what I was trying to say. The entire book arose from conversations I had in crip and queer communities. Often, my writing comes out of community, goes through the very solitary process of putting words on paper, is revised with the editorial help and support of a handful of queer and/or crip readers, and is released into the world, where hopefully it will be useful, particularly in the communities out of which it arose.
What did you learn about your ideas about cure as you wrote the book? How did they evolve? What surprised you?
As I wrote, I discovered just how far cure reaches. Once I started focusing on it, I found it everywhere—in ex-gay reparative therapy, dieting and weight loss surgery, skin lightening creams marketed to dark-skinned people of color, especially women of color, cochlear implants, hot springs, cancer research, and on and on. It became clear to me that cure wasn’t only a medical process but also an ideology.
Additionally, I came to the project knowing I wanted to find the messy middle between the pro-cure dominant worldview and the anti-cure politics I learned, and adopted, through the disability rights movement from mostly white and physically disabled activists. I wasn’t prepared for the layers of contradictions embedded in cure—cure saves lives, provides comfort, manipulates lives, prioritizes some lives over others, makes profit, functions as social control. At the very end of the book, I write:
“I, along with many of us, am alive because of medical technology and the ideology of cure that drives the discovery and development of those drugs, machines, protocols. Yet, cure also responds to the ‘trouble’ of being fat with gastric bypass surgery, dieting, and shaming. I have found body-mind comfort and connection through the medical-industrial complex. Yet, cure also responds to the ‘trouble’ of significant facial birthmarks with laser surgery and the ‘trouble’ of walking in ways deemed broken by breaking bones, resetting them, stretching them. Without hesitation, I use antibiotics, ibuprofen, synthetic testosterone, appreciating everything they do for me. Yet, cure also responds to the ‘trouble’ of voices and visions with body-mind-numbing psychotropic medication. This maze repeats itself endlessly.”
I entered it hoping to find places where all the contradictions meet matter-of-factly. But now, I want to step out. Step out of these constrained and constraining corners, roundabouts and dead ends. Step out and let cure be the contradictory mess it is.
In writing Brilliant Imperfection, I discovered just how entrenched and intractable these contradictions are.
How have evolutions in disability organizing over the past decade-plus—specifically, the creation of disability justice—affected your work?
It’s no accident that I learned my earlier fierce anti-cure politics from mostly white, physically disabled activists in the disability rights movement. Those politics created such important and righteous resistance to wholesale medicalization and the often violent categorization of disabled body-minds as abnormal and unnatural. But this resistance routinely ignores the visceral realities of chronic illness, chronic pain, and psych disability. As disability justice is centering the leadership of disabled people of color and queer/trans disabled people and is insisting on the connections between ableism, racism, capitalism, sexism, fatphobia, homophobia, transphobia, xenophobia, and imperialism, it is also making more space for sick and mad people in disability communities. This, in turn, means that our resistance to wholesale medicalization needs to be more complex and nuanced. As a white physically disabled writer, disability justice is pushing and stretching me in necessary ways. And as a queer and trans person living with episodic trauma-related psych disability, disability justice is a sigh of relief, a politics I’ve been reaching toward for a long time. Finally, disability justice makes the conversations about cure that I hope Brilliant Imperfection will provoke more possible.
What are your dangerous desires for disability movements and communities?
I want disabled, D/deaf, mad, and sick people to have messy and nuanced conversations about our body-minds and cure. I want these conversations to happen both in private and public. I want us to turn our backs on normal. I want us to build and practice a body politics that is as complicated and contradictory as our body-minds. Otherwise we will never find liberation. These are dangerous desires because as white queer disabled poet Laura Hershey writes in “Telling”:
“What you risk telling your story:
….The names you give to yourself
will become epithets.
Your happiness will be called
Your sadness will justify their pity.
Your fear will magnify their fears.
Everything you say will prove something about
their god, or their economic system.
Your feelings, that change day
to day, kaleidoscopic, will…
justify anything they decide to do
In a world that often believes that it’s better to be dead than disabled and that wants to eradicate disability, the dangers Laura Hershey names are all too real.
If you had a magic wand that worked, what would be your best-case scenario for a crip-controlled approach to cure?
This is such a huge question. Cure is embedded in a white Western medical system designed to disregard self- and community-determination and to foster medical authority over everyone’s body-minds. Disabled and non-disabled people, poor and rich people, people of color and white people, fat and slender people, trans and cis people, nonbinary people and women and men, queer and straight people are all subject to that authority, even as marginalized peoples feel the damaging impacts of it far more frequently. I don’t think there can be a crip-controlled approach to cure without radically changing the white Western medical system.
I think we need to end the wholesale medicalization of body-minds. Remove profit from the development and provision of medical technology. Value self-and community-determination over medical authority. Dismantle the concepts of normal and abnormal. Create space for well-being, body-mind loss and pain, and death to all coexist together. Within these changes, cure would stop being an ideology and simply become one medical tool among many, which disabled people could use in a variety of ways.