What It's Like Being 'The Woman in the Wheelchair'
It is an incredibly strange, surreal experience to go 23 years perceived as one way, disappear for months, and then re-emerge into society only to be perceived in a completely different way.
To provide background to my sudden acquired disability, I was hit with a lupus flare in late 2010 that went into my spinal cord, causing acute transverse myelitis (TM), a rare neurological disease in which the inflammation spans the width of the spinal cord, blocking signals and often causing permanent damage. TM can happen in varying degrees of severity and over varying degrees of timespan; my TM developed overnight, causing severe damage to my spinal cord that left me permanently and completely paralyzed from about my navel down.
This story, however, is not about my illness or my recovery process. This is about life back on the outside of home and the hospital; this is about navigating the world in a manual wheelchair.
It is true the trauma of illness changed me internally, but from the outside, the only visible difference between before and after was the fact that I was now sitting and pushing myself around. My mannerisms were the same, though I was certainly more cautious and careful as I learned to navigate the outside world from a seated position. My personality and intelligence and resilience had not changed, but as I quickly began to notice in people’s reactions to me and in the way people chose to interact with me, the general expectations of my capabilities seemed to have lowered. By lifetimes.
Women softened their voices when speaking to me; men treated me with more condescension than they already did before (because I was a young woman, and men often talk down to women, especially young women). I often felt that the general public seemed to treat me like they had heard I’d just lost a loved one, or like I was having an extremely bad day and they were trying to cheer me up or not upset me even more.
When I was strong enough to grocery shop on my own again, I quickly noticed that nobody was sure when I needed help, so I was constantly asked whether or not I did. People in general didn’t seem to think that when it came to being able to tell whether someone needs help, common sense applied to folks using wheelchairs. It didn’t seem to make a difference whether I was visibly struggling, or simply sitting and looking at the yogurt and trying to decide which flavor I was getting, or with how much apparent ease I was performing any task. It was as if I had a sign above my head saying “Help Me,” but it didn’t specify with what, or how one could offer the help.
Spatially, I quickly began to realize that nobody had good depth perception. When you use a chair, you have to be hyper-aware of where you are positioned and how much space you take up. After just a few short months of practice, I became very good at knowing how close I could get to things, all 360 degrees around me. The average adult, on the other hand, seemed to think standing several feet away was about as close to me as one was allowed to be. When I was in the grocery store or coming down the sidewalk, I could see the look of panic in people’s eyes and they would leap away from me as if I would run them over or hit them if they stood their ground. It made me feel powerful in a way, but it also irritated me because it felt like a mistrust of my driving abilities.
“You’re fine!” I wanted to scream at everyone. “You still have a yard of space between us!” When someone did accidentally bump into me because both them and I were not paying attention, the person often overreacted. A gasp of horror, profuse apologizing, and distress would ensue, sometimes to such an extent that I felt the need to reassure and comfort them that they had not hurt me.
When I was well enough to go out dancing again, I encountered a whole other slew of odd behaviors. Drunk people seemed to especially love asking me invasive questions, often point-blank with no lead-in conversation. Instead of a vague concern, I got the sense other bar patrons assumed it was a big deal for me to go out at all. So when strangers spoke to me, it operated under an assumption that I was having a Big Night Out.
“Are you having a good time?” a concerned gay man would say gently to me in the liquor line, leaning slightly forward and sometimes gently placing a hand on my shoulder.
“Yes?” I would say, confused as to why I wouldn’t be. That was answer enough, and he would stand back upright and nod, satisfied. “Good.”
And that would be the entire conversation. A person I had never met in my life, checking to make sure I was having a good time. This never happened to me when I was walking, but now it seemed to happen every time I entered a nightclub atmosphere. Sometimes more than once in a night, and I found it endlessly weird.
I also thought at first that I would feel strange on a dance floor sitting down, but I love music and the parts of me that can still move can dance. I can move my arms, my head, and shake my shoulders and chest. People appeared to be surprised, or even amused, that I was on the dance floor. Because I am seated, folks come up to me and try to grab my hands and dance with me by exaggeratedly by swinging my arms back and forth, the way one would with a toddler. It was insulting and I dealt with it by not grabbing hold of their open hands. If they grabbed me anyway, I would pointedly yank my hands back and glare. People did not seem to understand that what they were doing was annoying and insulting.
Touching back on the assumption that I was having a Big Night Out, I encountered a lot of folks who seemed to think I needed Extra Special Attention (ESA™) because I was using a chair. This always rubs me the wrong way because as I have mentioned, I was always the type of person who was good at slipping through the cracks unnoticed and fading into the crowd. With this new body and way of moving through the world, I was going to get immediate attention whether I wanted it or not, from a variety of people. Being seated also seemed to signal to people that I wanted a lap dance from them, which I almost certainly never did. But most folks wouldn’t ask first – I would be dancing on a floor and someone would just turn around, back up into me and start grinding against my legs and lap. I always wonder if they did this to someone who was in a lot of pain and could feel their legs, or whether this thought ever crossed people’s minds.
Another problem with bars was that I was much further below everybody’s line of sight. I had never realized how many people do not bother to look down to see where they are walking, so inevitably, people would run into me. I learned quickly to expect this from everybody and to never assume someone would walk around me. I also learned that tapping on people to get out of my way rarely did any good, nor did shouting that I needed to get through so they would move out of my way. The music is loud and people are intoxicated and shouting at each other to be heard over the music. My tap and polite “excuse me” would get lost in the din. So I began being more forceful, more assertive.
“Hello,” I would shout. “Right behind you.” When this didn’t work, I began shoving people or bumping into their feet with my chair. This seemed to do the trick. The annoyed looks I would receive once people realized I was trying to make my way past them made me anxious at first. I am a people-pleaser by nature and I don’t like to make people unhappy, or for anyone to be angry at me. Another thing I fast realized about being a wheelchair user in public is that I could no longer be the polite lady I was before, squeezing around people to avoid conversation and remaining unnoticed. I took up space now, and paradoxically had to be obnoxious to get anywhere in a crowd. It went completely against my nature and it was hard to force myself to do.
I gradually cared less and less. Yes, I was interrupting conversations. Yes, I was getting tons of irritated looks. Yes, people thought I was an angry crippled bitch and I’ve probably been called just that behind my back more times than I could ever imagine. But s***, I had places to be and shows to watch. I couldn’t let my politeness hold me back anymore because it was literally trapping me places.
I took to hitting the back of people’s knees to get their attention. At first I would gently touch their arm or their back, but they would assume someone standing up was trying to get their attention because of the height I was reaching at, and look straight back, missing me entirely. If I hit people at a low point, they would be forced to look down. So to get through a crowd, I holler at people even though my voice is quiet, and I whap backs of knees to demand attention.
When I had exhausted my arsenal of tactics, I ran over people’s feet. It didn’t happen too often, but when I needed to, I would, and it felt surprisingly good.
My underlying observation of all of these experiences quickly formulated: whether people were callous and annoyed, or overly concerned and hovering over me, my experiences with the general public were always fraught with a basic misunderstanding and a lack of knowledge of how to interact with a disabled woman. It bears repeating because every disability awareness campaign says this, but treat us like you would anybody else. Do you not normally talk to strangers? No need to seek me out and talk to me if you normally would not. Are you chatty and tend to befriend everybody you meet? I should be no different. It seems deceptively simple, but it is so rare that I have a normal interaction that when I do, I am overjoyed. I relish the moment that a person sees me approaching a door and does not panic or try to save me from the burden of the task. I celebrate when a bus driver asks me if I can flip up the seats so I have a space to park, and when I say yes, they believe me and let me do it. It is little things, but they mean a lot to me when the norm is the opposite happening.
Opening the door is such a strange battle. It is difficult at first to open a door and hold it open long enough to pass through in your chair, then close it behind you. I couldn’t do it the first few times I tried, because I was still gaining my balance and my arms weren’t very strong. As weeks went on in the hospital, I gradually got the hang of it. There’s a rhythm and a method, as is the case with most tasks from a chair. It takes practice. I got stronger and built up muscle in my arms. Now I can breeze up to a door, grab the handle, and either push it open or angle myself away from it and pull it open using the force of my rotation. I’ve got it under control.
A common misconception I encounter is that I, or anyone using a chair, is automatically incapable of getting through a door unaided. This is true for some wheelchair users, depending on a person’s strength and balance. The general unsureness some people have in interacting with me, coupled with this misconception, lends itself to some pretty awkward situations when it comes to me traveling through doors by myself. “Panic” is the word I will use here when explaining the demeanor of the stranger trying to help me with the door and make sure I get through it. Most of the time people won’t ask (especially men, which adds a gendered layer to these interactions) whether I need help, and they just will open the door for me and I’ll go through without saying anything. Maybe a quick “thanks,” but that’s it, because I like to keep the small talk to the bare minimum.
The other type of doorway interaction is when the person asks if they can get the door for me, and when I say I’ve got it, they ignore me and open it anyway, often accompanied by a quick “it’s no problem” or “well let me anyway” or “I want to make it easier for you.” All ignoring what I’ve just said. I always wonder if these people think I’m lying or just trying to put on a brave face, telling them I can get the door when secretly it is a great struggle for me or something I would rather not do.
The third type of doorway interaction is my least favorite, and this is when I am halfway through the door and going about opening it just fine, when a person will see me, panic, and rush over to the door to take it off my hands. A lot of the time the person, in doing this, partially blocks my path and actually makes it even more difficult to get through the door. This irritates me a lot, more than it would if it only happened occasionally. Try to imagine this happening once every few times you entered or exited any public establishment, and when you said something you were ignored or what you said was not taken seriously, as if you didn’t know what you were talking about.
I notice that all these assumptions about my abilities can be that I am capable of less or more, based the care I take in my personal appearance. I can’t go to the store to grab something wearing my sweatpants and no makeup and my glasses unless I feel fully prepared to be constantly talked to and stared at more than usual. I realize that because of my chair, if people see me dressed in loose-fitting clothes and putting minimal care into my personal appearance, they assume I cannot dress myself. Thus, I am treated more like I am fragile or may be easily upset, as though I may not be able to carry things myself, and like I may not be aware of what is going on around me. I am not insulted by this because of a belief that having a developmental disability is shameful; I didn’t know very much about living with one prior to my injury, and I have learned quite a bit about intellectual and sensory disabilities since joining the disabled community. There is nothing shameful about being a person who experiences either of these. I’ve met some incredible, capable, intelligent people who have taught me a lot about how they experience the world.
I am insulted because infantilizing anyone, whether or not they have a developmental disability, is insulting. I’m insulted when it’s done to me, and I’m insulted when it is done to anyone with any type of disability. It’s exhausting to reason with and fight against, and I unfortunately know it can be avoided if I dress extra nicely and fix my hair and do my makeup.
Try to imagine navigating a world where everybody you meet thinks they know better than you what is best for you, what you need, and what you are capable of doing – down to the simplest tasks like using the bathroom, grabbing something off the shelf, or picking up an item you have dropped. It gets taxing and it is emotionally exhausting to explain over and over again: that you are fine, you’ve got it, you’re capable, you don’t need help, you’re having a perfectly good day.
Adjusting to this weight, this stress I feel when I exist in public alone was incredibly exhausting. I still feel it when I leave the apartment, and there are some days when I have to really consider if I have the emotional energy to be “The Woman in the Wheelchair” that day. Some days I just do not, and I’m learning to accept that it’s OK.
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Thinkstock photo by Ryan McVay.