Act Up, Rise Up

My feet are cold. My fingernails are blue. I’m cold like everyone else is on this block, and there are 240 of us standing in wait to enter the building. I’m part of a group seeking audience with our House Representative, a man who hasn’t held a town hall in three years.

The difference between me and every other person standing there is that I’m leaning heavily on a white and red cane, the black handle pressing into my glove-encased hand, and my whole heart hoping I can make it through to the office, that I can be like everyone else here for just a few more minutes.

You see, my hip slipped its socket three days before the protest, and my knee went out the day before. To me, it’s normal, it’s part of my life in winter.

I have Congenital Rubella Syndrome. According to my medical records I’ve always had this problem with my left hip (the knee is just old age, probably, at least that’s the lie I tell myself to get through the day). I’m deafblind, I live with some weird joint issues, an inability to do math, and on some days standing for long periods of time just isn’t going to happen.

I am not the ideal conscript in the eyes of the able-bodied resistance, and yet I, and other disabled people including wheelchair users, are exactly who they need to stand and fight.

Standing, of course, sometimes needs to be metaphorical, though not everyone realizes it.

I learned to be an activist partly at the knee of my deceased father, a man who I model my disabled activism after every day. My father had AIDS, that’s how he lived and how he died. Some of my earliest memories are of him and my mom as members of ACT UP, of marching to chant “Shame” in front of St. Patrick’s Cathedral, of my dad telling me that he was going to Washington, D.C., to march even as he was sick and his body fought against him. Activism was a family value.

My father modeled resistance to someone who would one day need to lean on a cane in the cold.

But resistance for people like me, for people like my father, for people with all kinds of disabilities, doesn’t look like marching all the time. For many of us, it can’t. Being disabled and being visible is a part of resisting. Just living a life, unexpected and full of engagement, is a form of resistance for many of us.

Yet people don’t see that. They don’t see activism unless you’re on the ground, boots strapped on and a sign in your hand.

There are a dozen marches you could attend these days. Dozens of places to plant your feet and cheer and shout alongside others, and there’s no way that I can attend them all. I can barely even get to the ones I desperately want to attend. Every Friday I stand outside, and I wait my turn so that I can speak with my rep’s office in person.

I’d like to think my dad would be proud.

I’m not sure he knew what he was doing—that he was showing his daughter what she would need to be when she grew up—I’m sure he didn’t know a reality TV star would be our president, or that said president would be trying to take away my health care, my bodily autonomy. His resistance wasn’t just in the streets. My dad taught classes on AIDS education, he gave talks, encouraging people to practice safe sex, and not to use drugs. My dad spoke at church events, with hospice programs, at colleges.

He was also a writer. He wrote a play about being someone with AIDS. He did drag. He wrote and he wrote, and he wrote. Pages upon pages. All of them safely tucked away in boxes in the office where I sit writing these words.

Resistance is not about where you are shouting at the sky, but it is about putting yourself body and soul into the space of asking the world not to ignore you. Demanding from your government the right to be heard, to be seen. This is the core of resistance to me, and it is why the term slacktivism—a term often applied to the kind of resistance people with disabilities have access to—feels so wrong.

My father did what he could before he died to change the world, to change the perspective on him and on his death.

The problem is what disabled people do, whether online or in the streets, never seems like it’s enough for able-bodied people. We’re always branded as lazy, people always ask where we were, or what we did. If you can’t be in the streets, people don’t think you’re enough.

Fuck that.

Resistance looks different to everyone. Resistance looks different depending on if you have kids at home, if you have a partner or not, if you can afford bail.

Resistance looks different depending on what kind of disability that you have, and which intersections you belong to. Latinx, Jewish, black, trans, indigenous, undocumented—these all present challenges which can be doubled in the face of police action at protests.

Me? My resistance takes the form of writing pieces like this, of writing short stories about disability and time travel. It looks like Twitter use, and yes it looks like stepping out into the street and marching, even if I don’t feel entirely welcome.

Other people with disabilities will resist differently, but there’s something we all have in common: We all resist by being alive.

Fascism doesn’t have a place for disabled people to live. To exist.

It doesn’t have a use for most minorities—and if there’s one thing you should take away from this essay it’s that disability is not a monoculture. There are disabled people who are Jews (like me), who are people of color, who are Muslims. They live with the double threat of white supremacist, neo-Nazi ideology breathing down their necks.

Just living, sometimes, is enough to piss these people off and to resist their ideals.

Khamala Khan (aka Ms. Marvel of Marvel comics fame) once said that goodness is a thing that you do, not a thing that you are. I’d like to extend that. Resistance is a thing that you do, when you’re disabled, because of who you are. You’ve always been resisting. I resisted when I needed accommodations for school, and people said “No, you don’t really need those, do you?”

Which means in the face of an actual government, meant to represent us, but which is hell bent on pretending we aren’t here—well we have to fight just a little bit harder. 

But what does that mean for the able-bodied reader who wants to support, and who wants to do better by their disabled siblings in arms? How can you stop looking at us as the lesser fighters in the Rebel Alliance?

You can start by identifying where your ableism lives. Is it an urge to help a blind person cross the street even when she doesn’t need help? Does it live in the desire to coo at an adult who is a Little Person? Do you think of disabled people as Special Angels from God?

Once you know where the prejudice lives, you can begin to burn it down.

You can begin to see Twitter activism as a way to engage without having to leave the confines of your home. You can begin to acknowledge that for a blind woman with no lenses in her eyes, she might not be able to risk pepper spray the same way that you can. You can start to ask the right questions. Instead of sharing obvious information, you can ask honest questions.

You can leave space for adaptive devices to actually be used when we march. The most frustrating thing for me at the Women’s March in New York City was that I couldn’t use my cane. The tip hung uselessly an inch above the ground because if I stuck the tip out to actually graze the asphalt beneath my feet, I’d trip people.

You can give wheelchairs the space they need to roll along at the center of a march, without grumbling about how much space they take up. Hell, you can offer to push someone’s chair rather than letting a single person push them along for fifteen blocks.

Instead of surface sympathy, share empathy for your fellow humans. Give space, and cede a little bit of your time.

Be like one of the 240 people who gracefully let me step into the warmth of the building ahead of them on a cold Friday morning. Be like the people who marched beside me in New York, who told me when people wanted to take a picture of me with my sign, who made sure that I stayed upright as we crossed intersections choked with people.

The resistance will not be built on selfishness, or on ignorance. It will not be built on hate. In order for us to fully resist, we have to join hands and fight together. And that means valuing every single person who joins us. That means placing value in the blind woman marching beside you, the deaf woman who needs a translator to speak at a rally, the wheelchair user who chooses to stay home but who supports by retweeting and cheering people on.

Rebellions are built on hope. I have so many hopes for ours. My hope is that someday I’ll go to a march and I won’t be the one to start the chant of “disabled rights are civil rights.”

Until we reach that day, I’ll be the blind woman marching on my cane, remembering my father’s footsteps, and sharing the words I know how to write, and the stories I know how to tell.

I hope you’ll find the disabled people in your community and share their words, but more importantly, I hope you’ll listen. I hope you’ll remember us when you speak out against the injustice of removing the Affordable Care Act, which will hurt disabled people significantly. I hope you’ll fight against people like Betsy DeVos and Jeff Sessions, both of whom disdain the education of children with disabilities. They are members of the cabinet now, and we will have to fight their policies. Even now, Betsy DeVos has removed the IDEA section of the Department of Education website. Who knows what’s next?

I hope you won’t make us feel invisible, because we have been for so long, and I’m not sure I can stand wearing an invisibility cloak any longer.

When the chant of “Whose streets? Our streets!” is heard far and wide, I want the “our” to include me, and other disabled people. When “This is what democracy looks like!” is thrown up by the crowd, I want that democracy to include wheelchairs, and canes. A world where we are equal citizens under the law—and equal participants in resistance.

Remember us, we’re here.


Elsa Sjunneson

Elsa Sjunneson is a Deafblind author and editor living in Seattle, Washington. Her fiction and nonfiction writing has been praised as “eloquence and activism in lockstep” and has been published in dozens of venues around the world. She has been a Hugo Award finalist seven times, and has won Hugo, Aurora, and BFA awards for her editorial work. When she isn’t writing, Sjunneson works to dismantle structural ableism and rebuild community support for disabled people everywhere. Her work includes her debut memoir Being Seen: One Deafblind Woman’s Fight to End Ableism, her Assassin’s Creed: Valhalla novel Sword of the White Horse, and her episode for Radiolab “The Helen Keller Exorcism.”

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