Anja Hermann

Names Changed for Privacy

Community: (noun) “A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals” (Webster’s Dictionary).

Everyone wants to be a part of a community, to have a group of people like them, friends who know them better than they do themselves. As a young disabled person, I found it hard to find my community of disabled mentors and friends, and sometimes it felt like I was searching in a dark tunnel for some elusive treasure that was just out of my reach.

I live thirty minutes away from Chicago, a city famous for pizza and a bitter rivalry between two baseball teams. The city’s night life is eclectic and expansive—a far cry from the cookie-cutter suburban neighborhood I was raised in, where the “night life” is riveting town meetings discussing deer removal and sewer systems. While the small-town factor is charming, my family and I escaped to the city as often as we could because once you’ve sat through one town meeting, you’ve sat through them all. In particular, on these city jaunts, I was always looking for other disabled people to have wheelchair races with, to have people to talk with about the elevator at school breaking down, or to have comrades in the fight for equality bills to be passed in the Senate—a community I didn’t have at school.

I rolled up the ramp to enter the hallowed hall of the United States Capitol with my six fellow comrades. We looked around at the grand lobby, passing around the paper map we got at Guest Services with furrowed brows, looking for the congressional office where we attempted to get a meeting. “You guys, I’m sure this is the right building. Look, there’s the elevator,” said my group leader, Lea. We all piled into the elevator, our mobility aids so close, you couldn’t tell where one ended and the other started. We exited the elevator, and Lea led us down a marble hallway adorned by flags representing different US states. We entered the heavily carpeted office, and I hopped off my mobility scooter and sat on a plush office chair as the other members of my group blocked the office door with their chairs. I leaned back and gave myself a quick pep talk, my body jittering with anticipation. Okay, this is it. We drove all this way, so you better fight to get this bill passed, I told myself as the nervous anticipation switched to the excited kind. Momentarily, the internal office door swung open, and the congresswoman’s chief of staff came out with a smile that looked like shark fangs. We all spoke in turns, giving our impassioned speeches on the importance of the bill which we wanted the representative to co-sign, as the staffer—we’ll call her Jen—sat at her desk putting on an Oscar-worthy performance of feigned thoughtfulness.

It was my turn to speak next and I was uncharacteristically nervous, my mouth going dry as my brain went into a land of fantasy, where in twenty-five years, I would be the representative—or, if I were honest, President, sitting in an office just like this one, my passion evident as I governed. The fantasy abruptly ended, as my comrade wrapped up her statement, and I thought, screw it, this is my chance to knock this speech out of the park, so let’s do it! I stood on my scooter to feign importance, as I started to deliver my remarks. My mom, sitting in the chair next to me, looked on proudly, and I saw the rest of my group pass small smiles before plastering back on their stone-faced advocacy veneer. I finished and sat back down, intently focusing on Jen’s eyes while brushing lint off of my sensible dress with pale pink buttons and a polka dot collar.

Jen sat up and looked right at me as she spoke about how great it was that we were there, or how important our cause was. Lea asked if we could talk to the congresswoman. That was our cue, as we sat up straighter, and our hands instinctively clutched ourwheelchair joysticks ready for what everyone else called fun, and what I thought was just slightly terrifying. Jen’s eyes widened, and she told us that she was going to go check her schedule. The minute her suited frame crossed into the inner office, Lea told us that it was time to commence Phase Two of the plan.

Phase Two had a status of mythic proportions in this group and I desperately wanted to learn about it. Am I getting handed the keys to a metaphorical kingdom? I wondered, clutching my notebook full of logistical questions as I looked for the other group leader Otis, to rapidly fire questions to.

Thankfully, Otis took my incessant inquiries in stride, answering all of them with as much detail as possible, so that, ten minutes later, I had a detailed list of exactly what and what not to bring to a government building. All was going well in the conversation, and my purple flair pen was getting plenty of use, until Otis said, laughing, “And, obviously you can’t get arrested, since you’re under eighteen, but the other people around you probably will. Most of them wear it like a badge of honor.” My purple pen made jagged lines on the notebook paper as my mind ran rampant with fears. Are there going to be cops there? Is this a smart thing for me to be doing?

Phase Two was, as most things about this entire day,
in equal measure enthralling and heart stopping. Once we got our group assignments and schedule for the following day, Lea pulled us into the hotel “ballroom” which had been converted into the snack room, filled with packages of bottled water and every chip flavor imaginable. She told us with a grin that Phase Two meant “theater,” where we tried to get our target to come out for an audience with us. I asked what “theater” was, because in my mind, theater was Hamilton or community productions of Grease, not an advocacy group tactic. Lea winked at me and said, “Theater is when we use media, which you are going to pretend you haven’t seen, even if you have, to try to get points across.” I said that I understood and smiled at Lea as we exited the hotel into the spring Washington DC morning, the last petals of fallen cherry blossoms littering the sidewalk.

Which brings us back to that office, as the same grin overtook Lea’s face, and James, Lea’s husband, pulled up the videos we were going to play on his Mac, all in an attempt to get a signature on an all-important piece of legislation. The video played, the intro music filling the wooden paneled space, as I sat, straining to hear reactions from the inside of the closed door. After a while, Jen came out again and kept making up excuses about why we only got her to speak to. She went back into the room, this time claiming to check on the plane flight status, because . . . oh, yeah, now the congresswoman was on a plane and wouldn’t be back for an “indeterminate” amount of time.

Once the latch clicked on the door, everyone started pulling pillows and rolled-up coats out of tote bags, much to my confusion. I whispered to my mother frantically, “Are we sleeping here?”

She whispered back to me, “I don’t know. Just use this!” and passed me an extra sweater. I watched the plain clock on the wall as the minutes inched by. Weirdly, I felt like I was back in math class, waiting anxiously for the bell to ring when I could be liberated from the pain of learning about scale factor, instead of being hundreds of miles away in an office that we learned about in history class. I sat in that plush chair for four hours, participating in various civil disobedience tactics with a rapidly draining level of energy. We chanted “Disability rights are civil rights” from our chairs, using a megaphone made from paper, for at least fifteen minutes until Jen came out once again, and her eyes widened, as she maneuvered around the bags and blankets draped on the floor. The picture of calm, she asked with a monotone voice, “What exactly is happening here?”

The informed members of the group all responded that we would be sleeping on the floor. Jen’s face went slack, and her mouth made an O of surprise, as I’m sure mine did as well. My mom stepped on my foot, in a silent way of telling me to close my gaping mouth before I let frogs in. Jen stammered something and broke into a run, once again going into the mysterious staff room. I pulled out a bag of Reese’s peanut butter cups and offered them to the group, as we started to laugh about the absurdity of the day and how tired we all were. As I sat there, shoveling chocolate candy into my mouth (don’t judge me, I hadn’t eaten for a while), I felt it: the thing I had been looking for since the first lunch period at school, the threads of a blossoming community. These threads were as precious as gold to me, webs of joy and connection which I wanted more than anything else in the world to keep spinning, tethering me to these people, this freedom, all the way back to my small-town life.

Let’s switch gears for a moment and talk about resources YOU can use to get involved with a community. First, try to find an interest (or several!) to connect with people! If you are a theater nerd, join a local theater group to perform shows with. Same for cooking, baseball, tennis . . . join SOMETHING and you’ll find a group of people just as passionate as you! If you are looking for disability-centric organizations here are a few resources. I hope you find your group of comrades to have wheelchair races with or eat pounds of chocolate with.

RESOURCES

https://tellintales.org/ (A theater organization for both disabled and nondisabled theater performers)

Your local ADAPT chapter- https://adapt.org/ (ADAPT is a civil disobedience and disability rights group found across the country)

The National Council on Independent Living: https://ncil.org/ (NCIL is a national disability rights organization, focused on civil rights from a policy lens)