Last year, when I most needed my voice, a blood blister grew in the back of my throat, making it harder to speak. New bones grew in the floor of my mouth, crowding my palate, further exacerbating the issue. I often ran my tongue over them to keep from biting.
Last year I went on dates with people who said “You’re hot,” like it was some sort of flattering problem or puzzle; they were trying to figure out how to separate my attractiveness from my disabled body.
Sometimes on these dates I ran my tongue over my new bones, usually when dates got lazy enough to ask me to solve their sex puzzle for them. They’d lean in conspiratorially, eyes glinting, and coyly ask, “So, how does that even work?”
Recently I’ve been thinking about The Golden Globes and Time’s Up, and how powerful it was to see the way women can come together and flood a red carpet black. How it recalled the National Mall in pink; how in the sea of both I could not see myself easily.
Whenever something terrible happens to a disabled someone, people shrink and say “who would do that,” or “it’s unimaginable,” then remove it from their minds. They cannot bear to imagine it, so our reality remains deniable, though it is as provable as our unseen bodies.
We keep talking about representation and image, and the best representations of disability at the Globes were Three Billboards Outside Ebbings, Missouri, which liberally used federally recognized hate speech when referring to disability, and The Shape of Water, which featured a cripped-up lead actor in a fairytale disability narrative with a mermonster.
When I was three, my adult aunt Virginia came to live with us. What was then her clinical diagnosis is the slur referenced in Three Billboards. She is developmentally disabled and intellectually impaired. That slur was enshrined in the names of organizations which helped her while I was growing up, and flung around my schoolyards for cruelty.
Years ago, I was married to a man who edited television shows. He sometimes talked about how an image could shape a narrative. He cut funny things up and spliced them together. He tore me up, mostly inside my body, mostly when I slept. I did not know what was happening to me for years. He left considerable proof, and I attempted to prosecute.
My mother, though she had three kids and her own job, was Virginia’s primary caretaker. She made sure Virginia got dressed, ate breakfast, and got on the bus to the sheltered workshop where Virginia worked for eight hours, five days a week, until long after I moved out of the house. She picked Virginia up in the evening, made dinner, and sat at the kitchen table into the night.
I recognize all that my mother did, and I still related less to the tender, maternal Lady Bird than to The Shape of Water. You can spend a lot of time with someone who both others and adores you.
This is true of creators as well. Before seeing Guillermo del Toro’s film, I read an interview where he talked about meeting Sally Hawkins at a party and slurring into her hair, “I’m writing a movie for you.” Can you imagine writing a disabled part specifically for an abled actor? I will keep referring to her part here by Hawkins’ name rather than her character, a mute custodian, because I cannot get over this idea. If a creator imagines our interiority so complex, why not let us show it?
I cannot get over it because I don’t speak ASL, and even I know Hawkins’ signing wasn’t great. The only excuse I can conjure is that del Toro didn’t want to create some sort of deaf custodian trope, after Marlee Matlin’s Children of a Lesser God Oscar win only thirty-one years ago, four years before the Americans with Disabilities Act passed. Four years before we had rights.
Sometimes my mom watched TV. Other times, she’d flip through old photo albums and talk about how she looked in the past and present, and how I didn’t really look like her. Which was true. It was Virginia, my father’s sister’s body, that resembled mine. Both of us had thick thighs, knees that knocked together, ankles that rolled, and dark auburn hair. Our faces are the most similar; nobody else in our family shares our noses. I knew growing up, even though I had not yet been diagnosed, that I was closer to her than my other kin.
I looked at the Golden Globes red carpet, covered in black dresses, without finding someone who looked like me, or like Virginia. That doesn’t mean we weren’t there, but whoever was isn’t out as disabled.
Disabilities are also created through sexual assault. These things now described in the press very carefully, held back, so the details do not suggest that someone may be unfit for work as a result of having been through this ordeal.
While we collectively insist “mental instability” means being unfit for work, we keep talking out of both sides of our mouths. We are helping no one without thinking this implication through.
When I tried to prosecute, I went through it all over again, whatever that can mean. Assume everything. They say memory works by re-experiencing an act, so I got to talk about “that one time, with all the blood,” when I was hospitalized because it poured from my body for weeks seemingly without root cause. My doctors thought it was a rectocele, but there was no reason I might have one. Later, at Hill St., where we all get the blues, they wheeled me into the children’s waiting area and left me there before my meeting with the DA. How does a walker let me experience all of that, and still land me in a children’s zone, accompanied by tiny furniture?
Virginia had a series of sexual aggressions in her sheltered workshop. It was always hard to get the story. There was Freddie on the bus, who was thirty years older than her and unkempt, with long nose hairs. Once, while I was home for college, she excitedly planned for “Goodbye Freddie, hello boys!” while I was home from college. My mother took days off from work and tried to talk her supervisors into separating him from her, or the bus drivers to keep him away from her. It was effective for a little while. Eventually she had to leave.
There is a scene in The Shape of Water where Sally Hawkins is threatened sexually by her boss. It is more harrowing when you remember that the highest rates of sexual assault are for disabled people who cannot communicate their attacks.
At Virginia’s sheltered workshop, she was paid what is known as a “sub-minimum wage.” It is still legal to pay disabled people for piecework, or pennies for the hour. On average, Virginia’s checks were about $6 a week, $9 on a good one. She was still devastated by having had to leave her job.
The DA declined to prosecute my ex-husband. “You have proof,” I said. “Yes, but our concern is that a jury of your peers will find it difficult to believe a man would do this to his disabled wife.” A dozen jurors picked randomly by mail could look at me and decide my dowry was rape.
He nearly fucked a hole through my body and I lacked the language to explain it for years. Is the horror in this indelicate description from the act, the trauma, or both? Does my disability escalate it?
What is assault at all if framed in terms of a custodian’s rights? Where exactly is the line for my humanity? Where is Virginia’s? How can justice be attained for those of us unable to identify the source of trauma? “Who would do that?” What is justice, anyway?
The body itself does not hold the line, does not move us from avatars, does not provide equality. The more I do, the more accomplishments I rack up, the more likely my mother is to say, “You look like me when I was young.” I never will. I am older than she was in those photos, my syndrome is progressive, and, anyway, how can one become another’s past? It is less likely than knowing the future.
They never have a problem figuring out “how it works” when it’s not consensual. They have a problem wanting the person, not the power over the person, not the other.
In this movie, Sally Hawkins is asked how do you fuck, as though mermaid and mermen have not bred fantasy. To give an anatomical response is an abled impulse. I have had disabled lovers. Each revealed new secrets between our bodies, never repeated, either to or with others. We don’t do each other like that.
In an argument with my mother over Virginia, she said it did not hurt her to see them treat Virginia this way. Virginia’s sub-minimum wage, the hours taken away from my mother’s own job, her own interests, her own life, also did not affect her. She did not understand why it impacts me as another disabled woman. Virginia and I are different. I try to explain that I look like her, that we deserve equal rights. She disagrees: I deserve a fair wage. Virginia does not.
Was Sally Hawkins’ affinity for the monster like my relation to Virginia’s body? Is that gap smaller than that between me and those around me? See how even I other her now. In suturing myself back together, I am learning still.
This is where I understand that if we are in The Shape of Water (which we are not and never would be), Virginia is always the one behind glass, prodded, unable to be heard. In our story, she always bears more risk. This is also where I understand that what I least liked about the movie was its undeniable truth: that even when allied against a common enemy, we are considered separate. We are left in the water.
I understand why #TimesUp initially forgot about Disabled people, I do. We are not there. We are not visible on the carpet, in movies, in the workplace. Our bodies are not sexualized, or understood as rapeable, and even those closest to us do not understand our pay.
When my grandmother named her Virginia, could she have known that she was damning her to a future of piety or colonization?
In naming me Carolyn, could my parents have known how often I would be cleaved north from south?
In saying time’s up, me too, can you name disability as part of you?
My ex-husband once wrote a wish fulfillment in which he ended up on a red carpet. He wrote that he could not conceive of having me there with him, specifically the optics of me in a wheelchair with him. He wrote, incredulously, “How does that even work?”
Virginia has always had photos of movie stars on her walls. She used to say, “When you grow up, I’m gonna take you to Hollywood.” For a long time I believed her. I live here now, though she didn’t bring me. She doesn’t visit, but she always stays with me. Neither of us are in Hollywood.
This year when I run my tongue around my mouth, know I am sharpening those new bones into teeth.