Why I'd Rather Gather Online Than in Person as Someone With a Disability
I have spastic quadriplegic cerebral palsy. As a result, I use wheelchairs. Because I’m not able to shift my own weight much, let alone stand or walk, I use a power wheelchair that tilts and reclines. These features go a long way to help with achiness and stiffness, but they also make the chair a large one that fits well only in spaces that are built according to the most up-to-date accessibility specifications. For navigating tighter spaces, I have a manual wheelchair. I’m not able to transfer myself into either one of these chairs, and due to very limited arm extension and strength, I’m not able to wheel my manual wheelchair. Because of my limited ability to move, I’m also unable to transfer myself to toilets, wipe myself when I’m finished using the toilet, or reach much more than a foot in front of me. I can write with a pen or pencil, but the process is slow, and it makes the muscles and joints in my right hand hurt. Nevertheless, I am able to write this essay using my computer and speech recognition software. The software is typing my words, and I’m so grateful it can help me connect with you through these words you’re reading on your screen.
What speech recognition can’t do is help me connect with you face-to-face. But that’s OK because videoconferencing software can help me connect with others face-to-face. And I sure have been meeting with people since in-person gatherings moved online during the ongoing pandemic.
Before the pandemic, I taught online classes, but didn’t feel like I had much as of a social life as I do now. In that other world, I went to my mom’s work because I can’t be alone for more than a couple hours, I went to church, and I was involved in a book club that met at my local library. Now, I take part in two book clubs, a poetry group, and a Bible study.
This fall, one of my groups was planning to return to in-person meetings and was not planning to offer a Zoom option. It’s a group of more than 60 members. In response to the most recent wave of COVID-19, the group leaders (wisely, I think) decided in September to delay meeting in person until the spring semester.
I was relieved to learn of this decision, not disappointed, as many other group members were, and my relief wasn’t only thanks to my desire to protect people from COVID-19. (To be fair, the other members of the group share this desire and were supportive of the decision to continue to meet virtually.) I was relieved because I didn’t want to lose the option to participate in the group virtually.
In-person gatherings present a number of accessibility challenges for me, and these challenges are some of the triggers for my anxiety, which also makes me feel differently about in-person gatherings than many other people seem to.
One challenge is transportation. For several reasons, not the least of which are my very limited range of motion and my active startle reflex, I can’t drive. According to the website for my city, I could apply to get accessible public transportation from my house (which is not near one of the regular stops for the accessible city buses) to the location of the meeting, but even if my request were approved, I would be likely to have trouble getting into the building once I arrived.
Many public buildings still don’t have automatic doors. How am I going to get through the door? Maybe someone else will be arriving at the same time and will open the door for me, but it’s also possible that it would be a while before this happened. Even if the door includes a way to open it with the help of electronics, and it works, will it stay open long enough for me to enter it, or will I, knowing my time to roll through the open door is limited, panic so that my hands and arms begin to shake and I’m not able to drive my chair? If there is a second door, is it automatic, or does it have a button too? Is there space enough for my power wheelchair to fit between the two doors when they are open? My questions about doors here come from unpleasant experiences I’ve had trying to enter them.
Doors aside, are there thresholds in the doorways I’m going to struggle to get over because my power chair has a lock on the bottom of it so that it doesn’t roll around in the van? This lock catches on some thresholds and flooring surfaces, and sometimes my tires just spin. The solution is to have someone get behind me and push my chair while I drive it — that or have the other person drive the chair with more speed and momentum than I’m often able to. My power chair is more sensitive and jerkier than most people expect, so a well-intentioned, yet inexperienced driver of my chair may run over their own toes in the process. My power chair weighs more than 220 pounds with me in it, so it doesn’t feel good on toes. The good news is, if I have someone with me, we manage to get over thresholds.
But let’s go back to my van for a minute. Let’s say one of my parents drives me where I want to go in our van with a lift. This means my mom or dad has taken time out of their schedule to drive me there and drive me home. I appreciate them taking the time to do this, but I’ve enjoyed attending meetings during the pandemic without having to ask for a ride. I’ve also enjoyed not having to take to the roads to join in on gatherings. The muscles in my neck and torso are weak, so riding in vehicles jostles me. This aspect of getting out of the house isn’t the biggest deal, but it’s been nice to be more socially active but less jostled than my new involvement would have otherwise required.
Once we get to the parking lot for my destination, are we going to find enough space to let the lift down? And if we have enough space when I arrive, will we have enough space when it’s time to leave. Despite there being a sign in our van window asking other drivers to park at least eight feet away, people often park over the lines of their parking spaces. If this happens, my driver has to back the van further into traffic to bring the lift down. This is not the safest situation for either of us or our vehicle. Even if we have enough space to lower the lift and to roll my power chair on it, we sometimes worry about scratching the vehicle closest to ours. (For the record, we never have.)
It’s also always a possibility that something could go wrong with the lift. It holds together and attaches to the van with a lot of bolts and welding. It works thanks to electrical connections between its components and to the power that the van engine provides. Any connection can break, and metal rusts, especially in the humid climate of the barrier island where I live. The good news is the lift system in our van includes several safety features. These can be annoying when we have to figure out why the lift has stopped or when we have to brace ourselves for its beeps.
So far I’ve asked you to assume the gathering meets at a public building that has a parking lot and, thanks to the ADA, at least some form of a ramp. However, lots of great, informal groups meet at houses, which don’t tend to have parking lots or ramps. Nonetheless, chances are, several people in the group have a device on which they could sign into a videoconference. Right now, I have an amazing, strong neighbor who helps my dad lift my manual chair up the steps of houses so I can attend the small, vaccinated neighborhood that has begun book club meeting in person. (This is a different group than the one I mentioned earlier in this essay.) Given the residential environment where this book club meets, in no circumstances can I take for granted my ability to participate in this group in person. I’m grateful that I can right now, and I’m grateful that I was first able to meet with the other members of this group through Zoom.
I’ve written about challenges I encounter getting to gatherings and into buildings. Next, I’d like to share some questions I would have if I were to get past an entrance by myself. Is there an elevator I need to use? Will it be working? Will I be able to reach the buttons? Remember that for me, access is not just about having things at the right height. It’s about me being able to get close enough to use them. Would I have the strength to push any buttons I can reach? If I don’t need to use an elevator to get to the meeting room, will any inside doors be open? Inside doors aren’t usually automated.
All the questions in the previous paragraph are hypothetical. When I go into buildings in my real life, I never go in without a person beside me who can keep the things I just mentioned from being obstacles. Sometimes my companion is a friend. Usually, my companion is one of my parents.
In any case, now we’re at the meeting room. If it’s a restaurant, are the tables far apart enough for me to move between without other guests having to stand up? I hate causing other guests to get up while they’re eating. If I call attention to myself, I want it to be my decision to do so. If the meeting is at a restaurant, everybody else will be eating something, and they’ll want me to eat too. Heck! I want to. I love to eat out. Trouble is, I can’t get much of a fork or spoon full of food to my mouth. Most or all of it will end up on my shirt. Of course, bread and cookies don’t require utensils, but they crumble in what my family calls the “death grip.” I tend either to give something the “death grip” or drop it.
Even now, I imagine friends saying they’d be happy to help. I appreciate the sentiment, and there will be times when I will rely on that help, and I will be grateful for it. But that isn’t the kind of social integration this essay is about.
I find it difficult to meet with someone while someone else’s trying to help me eat, trying to gauge whether I’m about to say something or I’m ready for another bite. I feel that if the person there is also a participant in the meeting and the eating, it can be difficult for her to participate in the activity. On the other hand, if the person helping me is there only as my assistant, the person can feel like a third wheel, and I sometimes feel less comfortable participating as openly as I might if the only people at the meeting are me and the other participants. For this reason, the person who accompanies me to a meeting usually drops me off and comes back when the meeting is over.
Let’s say I’m at a gathering and want to make a note of something that happens or is said. If I’m in a relaxed environment, I am able to write using pen and paper, but, as I wrote at the beginning of this essay, the process of writing in the traditional way is a slow one. And gatherings can quickly become less-than-relaxing for me. If too many conversations are going on at once, or if there is more than a lot of loud background noise, I quickly feel overstimulated, drained, or anxious. I get tremors, and writing becomes impossible. Typing using the touchscreen keys on my phone becomes much more difficult.
Someone could text me the information, but I tend to be involved with groups that, before the pandemic, were not inclined to use technology to do what used to be done with pen and paper, so I’ve asked someone to make a note for me. If they wrote the note on a piece of paper and hand it to me, I’d have to ask that person to put it away for me. Otherwise, it was likely to blow away between the meeting and my house. Later, I’d have to ask one of my parents to get the note out for me. Now no matter how carefully the person described where he or she put the note, it always seemed like I had a difficult time helping another person retrieve it. My bags are always behind me on my chair, so when people put stuff in them, I can’t see what they do. What they might describe as the front pocket, someone at home might see as the back pocket.
When the note is found, I dictate it into a document or into my contacts list because if I left the information on the piece of paper, it would be likely to end up under newer pieces of paper over time, and information would become harder and harder for me to get to on my own as it piled up over time.
But thanks to my dictation software and the folders I’ve created and organized on my computer, very little has to pile up, and there’s so much that I can access quickly with just a few words of dictation and command, or a few clicks of my touchpad mouse.
When I gather with people and meet them through online conferencing, the background noise is a lot softer, and the software doesn’t tend to allow people to talk over each other. I can mute myself and dictate a note about something I want to remember, not to mention that many gatherings are recorded, and I can ask for the recording or download a copy of the chat conversation. When I gather with people online, we are all at eye level. People don’t reach down to me or shake my hand and then hesitate because I can’t quite reach their hands. People don’t have to reach over me to hug me, only to realize they aren’t sure how to hug me while I’m in my chair. My fingers don’t have to end up in their armpits when they reach around one side of my chair and I reach up to return the hug as best I can.
I haven’t noticed any of my friends having snacks during a videoconference, but I wouldn’t mind if someone did, and I don’t think the person eating would feel bad if I weren’t eating too that’s a good thing. For me, staying in a space where I’m comfortable and have as much independence as I can while still being able to talk face-to-face with friends means having the proverbial cake and eating it too.
I hear a lot that people don’t want to be seen the way a webcam shows them, but I want everyone to know, I’m not judging how they look when they talk to me through a webcam. I’m focusing on what they’re saying and how to respond.
I also know that being able to use technology to connect with people is a privilege too many cannot afford, so we still need the option to gather in person when it’s safe. I will continue to make the effort to join in-person gatherings. I’d just like to have the option to continue participating online for those days and in those situations when joining in person is complicated for me.
Getty image by Irina_Strelnikova.