Dealing with multiple chronic illnesses is demanding in the calmest of times. But, in a course where we are “on” and active at almost all times, it can make things nearly impossible. One of the things we’ve repeatedly talked about during this course is how to make arts accessible in ways that encourage active community engagement. One of the underappreciated aspects of this is allowing time and space for rest, as well as understanding and assuming that people will be disabled in any group. Recently, I was put in a series of situations (mostly by my own choice) in which there was no reasonable way for me to rest, eventually got to the point of crying from exhaustion during a performance, and have not been able to recover since. Accessibility is important, but often requires a lot of work and planning on the part of the disabled person. The physical solutions are often simple, simply placing a bench or chairs near places that people might wait like elevators or restaurant entrances can make a world of difference. But, in my experience as someone who is both young and invisibly disabled, lack of education and awareness can be just as much of a barrier as physical inaccessibility. For people without chronic illnesses, it can often be difficult to understand what we go through, and so it can be hard to imagine what we might need in order to make the arts more accessible. So, in the hopes of spreading awareness about invisible disability and the arts, here’s a choose your own adventure about some of my experiences.
Crying from exhaustion in the Arena Theater
First, some very general background about my experiences so I can be specific about what it is I’m demonstrating. Chronic illness is a very broad term, and will be experienced differently depending on the person, the diagnosis, their treatment (or lack thereof), and the situation. I am currently in the diagnostic process for a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. There are too many symptoms and common comorbidities to count, but the basics for this exercise are that my joints sublux (partially dislocate) or dislocate frequently and without much physical impact or trauma, I have complex issues with my digestive system that mean I have a number of unusual dietary restrictions, I get lightheaded on standing most times, and I have random allergic reactions. As with most chronically ill people, I am constantly fatigued, and in pain. Here’s a step into my world.
- You are outside of the Supreme Court, its cold, and you expect to be standing outside for several hours. There are no benches, and you can’t go inside. Do you: A. Sit down on the ground. The marble is cold so you’ll have to expend more energy to keep warm, and you will have to put your hip back in place once you stand up. You will have to strain to hear your friends speak. Or, B. Stay standing. Your knees and hips will suffer, and you’ll get lightheaded from standing, but you’ll be able to hear your friends easily, and you won’t have to deal with standing up again.
If you chose A, go on to #2
If you chose B, go on to #5
- You know you’re going to have to stand up eventually, and you know that drinking water will help you not to faint when you do. Getting out of line is risky because you might miss your chance to get a ticket into the courtroom. Do you A. Drink a bottle of water. It’s going to be a long day and you need the hydration. Or, B. Hold off on the water. You can’t afford to need to go to the bathroom when you’re so close to being able to see the Supreme Court in action.
If you chose A, go on to #3
If you chose B, go on to #7
- You drink your bottle of water. Half an hour later, you need to go to the bathroom. The building is open, but tickets might be handed out at any minute, and you need to be in line to get one. Do you, A. Go to the bathroom. You need to go, and there’s no way to be sure when the tickets will come out anyway. Or, B. Hold it. This is a once in a lifetime opportunity, and you will not miss it.
If you chose A, go on to #4
If you chose B, go on to #5
- You go to the bathroom, and while you’re inside, the tickets are handed out. You miss your chance to see the Supreme Court. Go back to #1.
- Your hips are in agony, and they won’t stop subluxing. You are exhausted from standing, and can’t wait to go to the bathroom, but 5 hours after you arrive, you get a ticket into the Supreme Court. You now get to sit in a supportive chair for an hour. Move on to #6.
- You finish at the Supreme Court, and you have a gallery pass for the Senate. This is a once in a lifetime opportunity to see the Senate during impeachment. Do you, A. Cross the street and go to the Senate. You are exhausted, but this is worth it. You can never see this again. Or, B. Go home and rest. You can always watch impeachment on TV from your bed.
If you chose A, go on to #8
If you chose B, go on to #9
- Your throat feels like a desert. Your head is pounding, and your heart is racing. Suddenly, your vision begins to blur, and your body feels heavy. You pass out on the floor. Go back to #1.
- You arrive at the Capitol building and join the line forming to enter the gallery. You quickly eat a small snack as your lunch. You’re hungry, but again, this is your only chance to do this. You stand for 3 hours in line to get 30 minutes in the gallery. The exhaustion you felt this morning is starting to compound with this. Move on to #10.
- You rest in bed, and take a nap. You are still exhausted when you wake up, and you find that your shoulder has dislocated in your sleep. You pop it back into its socket, and get up to head to class. Move on to #11.
- You have time to walk to the theater you’re supposed to meet the class at, and it’s an expensive metro ride. Your body is screaming at you to sit, and to take your backpack off. It’s almost entirely empty, but it might as well way 100 lbs. Do you, A. Take the metro. It’s worth the money to be able to sit. Or, B. Walk. You’re tired, but walking might keep you awake, and besides, it’s free.
If you chose A, move on to #11
If you chose B, move on to #12
- You enter the metro station and get on the train. While you’re riding, someone gets on wearing heavy perfume. You begin to feel your throat tighten, and your skin begins to itch all over. You’re having an allergic reaction. You take a zyrtec, and the reaction begins to calm down. However, your body just went through a lot of stress, and you’re even more exhausted. Move on to #13.
- You walk to the theater, you arrive, and enter the classroom. You try your best to concentrate, but you just can’t. You begin to feel the nausea that tells you that you’ve overdone it by a longshot. You can’t possibly make it through the evening, and go home to sleep. Go back to #6.
- You make it to the theater, and sit down in the classroom. The teacher asks you to stand for an activity. Do you, A. Stand up. It’s hard, but you missed class twice today, and you need to be engaged. Or, B. Stay sitting. You can listen just as well from there, and you’ll save energy.
If you chose A, go back to #7
If you chose B, go on to #14
- After class, you have a little time for dinner before the performance. You aren’t familiar with the restaurants nearby, and you don’t have enough time to check every menu, so you let your friends choose a place. You are incredibly hungry since you’ve barely eaten all day. When you arrive, you realize you can’t eat anything on their menu. Luckily, you experience this often, so you order something without the ingredients you can’t eat. When your meal arrives, you realize that the menu didn’t list one of the ingredients, and you won’t be able to eat what they’ve served you. You explain to the waiter, and send it back. You feel bad for wasting food, but the restaurant should have been more clear about what was actually in the dish. The replacement arrives, but when you try it, you still don’t trust that it won’t hurt you. You eat around the main part of the dish and hope for the best. Go on to #15
- You arrive at the theater, and sit down for the play. The lights go down, and you begin to feel how tired you are. You realize that your stomach is starting to gurgle in the way it only does when its too tired to digest. This could end badly. You take a ginger mint out of your bag, and suck on it for a while. You feel a little better, but when intermission begins, and you talk to your friends, you begin crying out of sheer exhaustion. Do you, A. Go home, clearly you are too tired to sit out this show. Or, B. Stick it out. It can’t be that much longer, and you need to be engaged in class.
If you chose A, go on to #16
If you chose B, go on to #17
- Congratulations! You’ve made it through your day. You crawl into bed, and fall asleep. You will be exhausted for weeks, but it was an incredible day and you’ll remember it for the rest of your life.
- You stick it out, and find that your stomach is only getting worse. Halfway through the second half, you run out of the theater and run to the bathroom to throw up. You make it, but barely. You can’t stop shaking, and you feel dizzy and dehydrated. You really overdid it. You decide to go home. Go back to #16.
As you can see from this choose your own adventure, every choice you make throughout the day makes a huge impact on your ability to function with a chronic illness. This is why accessibility, and keeping chronically ill and disabled people in mind when planning events and spaces matters. If the guards at the Supreme Court had been clearer about when tickets would be handed out, if there was extra time to think about food for dinner, or any number of other things had happened slightly differently, the day might have been less difficult. There is no way to make these illnesses or symptoms go away entirely, but many little things can help make our days much better and safer. When thinking about accessibility, it is key to both talk to people impacted, and to recognize that everything has implications for accessibility. This can make the job of thinking about and designing accessibility difficult, but it also ensures that everyone has true access to the world they live in.