I’m not sure if I’ve referenced “spoon theory” here before, but it’s a concept that aptly describes my limitations this week. You can read the whole post here, but the summary is that a woman with a chronic illness explained to her friend that those with chronic illness or disability begin each day with a limited number of spoons which represent energy to accomplish tasks whereas able bodied people have a limitless supply of spoons. I have a limited supply of spoons, and it takes a spoon to open my eyes each morning, to get out of bed, to put on my clothes, to go to the bathroom – some of these tasks take multiple spoons. Nearly none of you have to budget your energy for any of those tasks. I frequently have to make judgement calls about what I’ll do each day knowing that I’ll eventually run out of spoons. I can sometimes borrow spoons into the next day, but then I’m starting the following day even lower on spoons.
This weekend, there is a great professional development opportunity available to BFA staff as our school is hosting a conference for international Christian educators put on by the Association of Christian Schools International. As a BFA staff member, I was signed up for the full package, and I was so excited to listen to respected educators and engage in insightful workshops. The conference is only three days, and it’s completely full days Saturday afternoon to Tuesday afternoon. And I mean completely full. Sunday and Monday were booked solid for twelve hours of content. I love learning, and this is a conference for learners to be better teachers. This is all content I’m excited about.
Unfortunately, my body and the school’s facility don’t match my enthusiasm. This weekend has presented new challenges to me that are difficult to articulate to all the lovely masses who think they are offering help but don’t understand how life with disabilities works. I’m going to try, but I’d like to preface it by saying if you’ve offered something that I here explain is not helpful, it’s okay. You don’t need to apologize, you don’t need to make a big deal about it, you didn’t know. Please, though, learn from this experience a little more of the whole picture of life with disabilities.
Our main building doesn’t have an elevator. We have two elevator shafts that are currently used as storage space and as recently as my arrival at BFA were used as offices as well. The building is not meant to be accessible to me. The gymnasium on the second floor was the only place that was usable for this conference as a cafeteria area. There are various reasons this decision was made; I was not taken into account in the decision. Should I have been? Well, there should be an elevator. Anyways, this was the circumstance with which I was faced, and my options were to not be fed, to have food brought to me, or to make my way up the stairs.
Here’s a quick reminder for you of my mobility ability: stairs are rough for me.
I usually do two staircases a week, and I have a lot of time after each go to recover. There was no way that I was going to go up and down a flight of stairs twice a day in the middle of twelve hour days for food when there was no recovery time. I asked instead if my food could be brought down to the main level by a friend who could eat with me. The staff happily agreed, but I also had several offers that if I wanted to get up to the gym, they could make it happen. Here’s what is not taken into account by those offers: my dignity. I have the physical capacity to get myself up the stairs. I do not need to be carried. Carrying me up the stairs robs me of my dignity in a way you just can’t imagine. It’s unnecessarily humiliating for me. Furthermore, I have the ability to move my legs just enough to get myself up stairs, but that doesn’t mean I have the energy. Our gym has a second door that opens to a grassy slope that others offered to push me up. This still robs me of energy even if I’m being pushed, so it’s another no go.
I had communicated that I’d try to go to the banquet this evening up the stairs with help, but when it came time to make my way upstairs, I was out of spoons. I’ve already borrowed spoons from tomorrow and Wednesday; I was too far in debt to get to the gym. Most people I told readily understood that I’d pushed way past my usual limits. Able bodied people were tired at this point after two and a half full days, and I’d attended nearly every workshop and plenary session. It is completely legitimate for me to be tired, and I’m proud of how much I accomplished today. I’m also proud of myself for not ramming rude people with my wheelchair.
Another caveat: before I was in a wheelchair, I didn’t think much about people in wheelchairs. It was wrong. I get that other people think like I used to. It’s still wrong.
I used to allow for a lot of bending of my dignity because I was still learning the limits of my disability, but there are things that are just not okay. Here are three from today.
First, our school only has one disabled bathroom (that’s not even the not okay part of the story, though that also is problematic and I found myself almost locked in the building last night because I had to go to another building to use a toilet before dinner – but I digress from today). The single disabled bathroom is located near the front entrance to the building where I teach which has a small lobby area that has had a coffee station this weekend. There’s not a lot of room to stand and chat, so people have squeezed beneath the stairwell and on the other side which leads directly to my bathroom door. In fact, the only thing you see in this small open space is my door which has a handicapped symbol above a sign that reads “DO NOT BLOCK ACCESS TO THIS DOOR.” Even so, because there are so many people squeezing in, I’ve found the door blocked nearly every time I’ve made my way to the restroom. Fortunately, most times it’s just a couple people standing well in front of it, and I just need to ask them to part for me. However, at one point today, when I was finished going to the bathroom, I discovered resistance when I tried to open the door to get out. Someone was standing against my door.
They moved quickly and were apologetic, but I can’t stress enough the not-okayness of this situation. I was fortunate they weren’t sitting or leaning against it, but they had placed a laptop bag in front of it and were standing close enough that I hit them without getting more than six inches of the door open. A BFA staff member behind them noticed me trying to get out and came to help me with the door in my confusion as I was shoving against this strange resistance. I realized there was a person crammed behind the door when I wheeled past. I’m not sorry I squished them. That could have easily been me just over two years ago, but I too would have deserved a serious smacking with that door if I blocked a wheelchair user in the disabled bathroom. That is not appropriate.
Second anecdote context: I’m deathly allergic to peanuts. During the fifteen minute break between workshop sessions today, there were snacks available to delegates – at least all the delegates who don’t have life threatening food allergies. Since I couldn’t have the snacks, and I was already really tired, I’d asked my amazing student who’s been around this weekend for worship team to run to the store and buy me chocolate to give me a little boost. I was wheeling down the hall with the chocolate on my lap and expertly navigating the crowds before entering the elevator for my next session. Our elevator requires a key which I’m privileged enough to have. Our elevator is also tiny, so for convenience, I enter backwards and exit forwards. I’d turned the key and whipped my wheelchair around to back into the elevator, but in my haste, the chocolate on my lap fell on the floor. A kind hearted woman knelt to pick it up with her free hand that had just deposited nuts in her mouth.
“Please don’t, please don’t, please don’t! I’ve got it!” I was afraid she’d touch my precious chocolate with her nut dusted hands which could lead to my unfortunate death. Normally I’d let someone pick up a dropped item though I am capable of it. I was concerned here about the food allergy, not the disability.
“Wow, aren’t you so independent!” the woman was somewhere between impressed or insulted. I didn’t have time to figure it out because the elevator door opened.
“No, I’m just allergic to peanuts!” I swiped up my chocolate and backed into the elevator which quickly closed behind me.
Now, the problem here is probably harder for most of you to see than in the previous scenario. The woman was being polite, and I was likely the one to come across as more rude resisting her kind act. However, something that it’s important for all of us to learn is that a disabled person might need to learn to do something on their own, and you should respect that if they decline your offer for help. I’ve tried to write about that before referencing the Steve Saint clip. This is the clearest of all the encounters today that I’ve had where people were affronted by this. Lots of people offer to do things for me that I decline – I’m never offended when they offer, but it’s an insult to me when you don’t respect my decision. Sometimes offers for help bring more harm that good (as the peanuts in contact with my beautiful chocolate would), and you need to trust that the disabled person has the autonomy to make that call. Now, this is why the woman’s response would have been problematic if she was insulted by my “rude” refusal of help and sarcastically declared me independent. There’s a chance she was being genuine though; this is equally if not more offensive towards me. I’m a pretty impressive person: I earned a masters degree by 24, moved to Germany to teach TCKs, I have read Crime and Punishment in it’s entirety of my own free will. I also live alone and take care of myself without assistance after a spinal cord injury which is moderately impressive. It’s not at all impressive to pick up a small box of chocolate off the floor. That’s not even the most impressive thing I’d done that hour. It was incredibly demeaning to me as a human being if she was impressed at my independence in picking up a box of chocolate. She didn’t know anything about me except that I was in a wheelchair, and she assumed it was a huge deal that I was bending down to pick up what I’d dropped just like any other person would do based solely on the fact that I was in a wheelchair.
The final frustration I’ll share took place when I was keeping Carol company at the hospitality table. A woman from another school came up to strike up a conversation about my disability. It’s the most obvious physical feature that I have, but it is not okay to ask somebody in a wheelchair, “So what happened to you?” I’m not hiding anything, but it’s a super personal thing for many people with disabilities. Furthermore, there’s an appropriate context for asking that kind of question, and I can promise you, it’s never okay for it to be the first thing out of your mouth when you introduce yourself to me. You can easily bring it naturally into a conversation if you’re that curious. For example, after some pleasantries about what content I teach and how long I’ve been at BFA you might ask how I find it to be as a teacher in a wheelchair if that provides any difficulties – this is fitting in a conference for teachers. However, this woman just asked, “So what happened to you?” That’s not even her biggest faux pas. Once I told her I broke my back (like I said, I’m not hiding anything), she asked me how long I was expected to be in the wheelchair. “The rest of my life. I’m paralyzed.” I was kinda shocked at the question because most people know that breaking your back isn’t like breaking your leg. “Oh,” she replied, “I just thought it must be less because you were just sitting here looking so happy and normal.” This woman thinks you can’t be happy and normal if you’re in a wheelchair. This is the most offensive thing I’ve encountered since my accident. My wheelchair allows me to be happy and normal. Without it, I’d be bedridden and helpless. With it, I can attend a conference where people are rude to me.
I’m incredibly fortunate in that I’ve recovered a lot of mobility and can be so independent with my wheelchair, but there are people with even less functionality than I have who lead beautiful happy lives in their own realm of normal. Please, I beg of you, don’t ever think of someone with a permanent disability to be incapable of happiness. That’s dehumanizing.
I do look different than most of you because of my disability, but I’m still a human. A human with admittedly significantly less energy than most of you, but don’t rob me of my human dignity. Be like Hunter who thinks about accessibility when walking places I might go. Be like Carol who never picks things up for me (just kidding – she would if I asked her to). Be like Helen who asked me how my heart was doing as I watched the line for dinner snake up the spiral staircase.
