Imagine a piece of flat, perfect, origami paper. White on one side, vibrantly purple on the other.
This is the representation of my emotions before Life happened.
I remember the first time that I was ever truly, rightfully, angry. My father was dying. He was dying from a disease riddled with social stigma. When the doctors told us we had less than a year left with him, I perfectly articulated my feelings at seven years of age: “Fuck AIDS.”
Fold the paper in half by taking the top corner and folding it to the bottom corner, as you learn what it feels like to be angry, as you learn that the world isn’t just, because there is no cure for the thing that will kill your father.
I remember the first time that a man took advantage of my body, the first time I thought to myself “why are you doing this to me?”
Fold the triangle in half, as you press the page down, control the rage that you feel at those who can take advantage of you.
My rage is supposed to be small. Manageable. Pretty. I am supposed to fold it down, make it something to consume—like an origami crane or a perfectly hand-dipped candle. I am a disabled woman. I have learned to suppress, to fold, to disappear. When I fold down my rage, I fold down myself. I make myself smaller, prettier, easier to consume.
But I am not easy to consume. I am a deafblind woman. And I am angry at the world.
I am angry because I live in a world that does not see me as capable, I am angry because I live in a world where I am expected to keep up, or sit down. I am angry because I am a queer woman, and I have been given the gift of generational trauma in the form of homophobia.
I am angry because this world? It wants me to sit back and let someone else take the wheel, and I’ve never been that kind of girl.
I remember the first time that someone yelled at me in a department store, asking where my “helper” was, asking if I could hear them.
Take the top flap and open it, creasing the left and right sides so you can fold the top/right corner to the bottom corner, suppress the urge to cry in public because people are asking why you, a twenty-year-old, are out by yourself.
There’s something really horrifying about realizing people don’t see you as an adult when you are in fact, an adult. There’s something angering about it too, that people assume based on the kind of body that you live in, or the sort of marginalization you carry within yourself that you can only be an adult if someone helps you.
With time, I had to learn how to deal with those feelings.
Turn the paper over and do the same thing to the other side, refuse to make yourself smaller even as you create something out of your anger.
This world, this society, wants to destroy me. It wants me to be small, it wants me to cower in a corner, afraid to see the light. It offers me locked doors, closed windows, and rejection at every turn.
Society paints my rage as a tantrum, it tries to label me a little girl who should go play with her dollies if she can’t keep up with the big boys and get a thicker skin.
Grab the left and right side of the flap and open it up. Crease the sides so you can fold the top corner down to the bottom. Hold the fragile paper object, which opens like a flower, in your hands. Don’t crush it because you feel a need to destroy something when a colleague compares you to a child.
With each closed door, with each insult, I fold. I crease. I twist. I bend. I make something out of the rage that wells up inside of my chest. It sits somewhere beneath my collarbone; I can feel it sometimes. I live in a world that doesn’t want me.
I have lived a life fueled by anger. I have been given the gift of rage. My rage could have destroyed me. I suspect it was meant to. Being harassed because of my disability, being bullied for being smart, being told to be smaller because I was scaring people with my smartness, to hide my eye because it made people uncomfortable, because my brains and my cataract weren’t ladylike enough… with each fold and crease I found poise and grace, and I found a weapon.
Take both sides of the top layer and fold them in to meet at the middle, then unfold. This step is preparation for the next step.
I don’t let it show anymore.
When I was in college, my rage was palpable. I would shout and cry more frequently. I opened my mouth and let opinions flow like wine, and I gave people more fodder to dislike me.
The world gives angry women few options, it offers us the option to be shot down for our rage. To be told that we are throwing tantrums, that we are “cute” when we are angry, that our rage isn’t useful. My rage has become useful. I have weaponized it beyond recognition.
Open the flap upwards. Show your Congressman your vulnerable parts, tell him how afraid you are of losing your healthcare, of how much you don’t want to lose your friends and family again like you did in the 1990s. He won’t listen, but you tried. You used your rage for good.
For a long time, my rage was weaponized online, it was almost performance art. People liked the angry disabled woman. They retweeted her. They wanted to show my rage off to the world.
But the truth is, my rage isn’t what’s saved me, it isn’t what’s made me who I am.
What’s made me who I am is my radical vulnerability.
Fold the left and right sides inward. The paper will look like an art deco ceiling decoration. This is the face you present to the world. Collected, but with all of the folding and twisting and bending underneath.
These days I don’t just shriek into the void without purpose (well, not much anyway—sometimes the world still pushes me too far). These days, if I’m yelling, if I’m sharing more than most people would, it’s with a purpose. I’ve begun sharing more of my emotional self, more of my soft underbelly, in the search for compassion. With the hope that someone who knows nothing of my life will see me who for who I am: a human being just like them. I’ve done this a lot on Twitter. Sometimes it’s a thread about inaccessibility, where I use photos and emotion to convey how frustrating it is to be locked out of a movie theater, or having to enter a fancy restaurant through the garbage elevator. Other times it’s re-sharing the things able-bodied people say to disabled people, when they’ve never met us before, like the woman who told me I was so AMAZING and BRAVE for ordering my coffee by myself.
I choose to share my feelings, not because I want people to see my emotion as a vulnerability, but because I want people to understand why my life has become about showing people the private life of a deafblind woman.
I bend, I twist, I crease, I fold… I burn. I burn brightly with my rage and I show it to the world when it suits me, when it’s appropriate. When the world needs to know that I am angry. These days I try not to make the rage make me feel small, I try to use the rage to teach people how to be better. Because my rage isn’t a fire stoked by those who would harm me—it’s a fire fed by social discrimination, by a society not built to sustain me.
What I’ve learned is that it is more comfortable for able-bodied people to call a disabled person’s valid concern and fear a tantrum, or a petty fit, because to agree with or to acknowledge the rage would require an abled person to introspectively recognize their privilege. It would require them to understand that a disabled person has a right to be angry, not just at the specific blockade in their way, but at a society which creates those blockades.
Take the left and right pieces underneath the top flap and pull them apart. Crease the bottom of those pieces so that they’ll stay spread apart. Open your heart, and show people what it is like to be the only disabled person in a room, to be the only one fighting for the things you need to survive. Give them no option but to consider your humanity.
So I turned to being radically vulnerable. Instead of simply being angry at the world, I started to think of ways to show people why I was angry. Some of my essays have been about opening myself stitch by stitch, and showing people what ableism has done to my soul. I told my readers about the many ways in which my writing has been suppressed—the many ways I have been suppressed—in “I Built my Own Goddamn Castle”; I shared with my readers about what it was like to get a scleral shell made in “My artificial eye” in the Boston Globe; I closed my eyes and dreamed about my deceased father for days before writing “Act Up, Rise Up” for Uncanny Magazine.
I share pieces of my soul in order to show people the world we live in. Because even though I’m angry, I display it differently. I show my anger, but that anger comes with a distinct expectation of compassion, with a need for people to see me as more than just a disabled woman, as a person.
A person who feels so strongly about the world that she lives in that she has no choice but to turn her burning rage into a beacon.
Take one of those pieces that you pulled apart, and slightly open the top corner so that you can bend a portion of it down to form the head. After bending a portion down, crease the sides of the head up so the piece will stay bent: hold it in your hands, look at the face that you have made.
Bend the wings down at a 90 degree angle and finish the crane, but know there are more to make, more stories to tell, more birds to set free.
© 2019 Elsa Sjunneson-Henry