So I started using a wheelchair…

Hey y’all,

It’s me again. If you follow me on instagram you may have already noticed that a while back I got myself a wheelchair. I had been trying to get one through benefits, but it turns out that’s not gonna happen without a diagnosis. So I decided not to wait for that and spend the money myself. Granted, I got a fairly basic wheelchair, but I figured I’d rather be an ambulatory now than always need it later, specially with the lack of accessible housing.

Anyway, I have now been using my wheelchair for a little over a month and I wanted to talk a bit about my experiences. Now of course I am far from the first to experience this, but I want to share it anyway. This decision to start using a wheelchair did not come out of nowhere. I have been using a cane for a few years and I find that it’s just not providing enough relief for my legs for the stress it puts on the joints of my upper body. It’s not that using a manual wheelchair doesn’t put stress on my upper body, but the balance works. I did not become disabled the moment I started using a wheelchair. I have been disabled long before that. Though I haven’t been disabled my entire life, I did have my condition my entire life, it just slowly got worse over time. As a kid there were annoyances, but I never thought much of it. As a teenager I though the pain I had when I had to stand for a few minutes was normal and I pushed through it. It took being bed ridden to realise that my body was in fact not normal.

Anyway, what I wanted to talk about was the differences between using a wheelchair and using a cane. Originally I wanted to title this post something along the lines of “becoming visibly disabled”, but considering the fact that I can still get up from my wheelchair (and in fact do need to do so because my flat isn’t wheelchair friendly) and I still look exactly the same when I get up as I did when I sat down, I didn’t become anything, I simply started using something.

However, there is still a difference in how I am perceived. When I use my cane, people don’t take my disability seriously. Either I fake my disability, my cane is just an accessoire, or I’m a crybaby and it can’t really be that bad because I’m still young. With my disability not being taken seriously, neither are my needs. When I use my wheelchair people recognise that I’m disabled and consider my needs. That is to say, they consider that I have needs that are different from them, they often have no clue what those needs actually are. I have once even been asked if I needed a seat. That’s kinda the whole point of a wheelchair, it IS a seat. While when I use my cane (or when I don’t use either) is when I actually need a seat.

However, people realising I have needs that are different from theirs can quickly become frustrating as well. Don’t get me wrong, I’ve encountered people who were great, but so many people just get it wrong. And no matter how good their intent may be, they still have a lot to learn. I have had people reach over me from behind to grab the groceries I just paid for right from under my hands to put them in the bag I was holding in front of me and get offended when that startled me. I have had people ask if I needed help and proceed to touch me or my stuff after I said no. I have been told “good for you” in the most condescending tone for being outside while somehow simultaneously not acknowledging the lack of accessibility and the workout a stroll is (specially as a new wheelchair user). I have been talked to like I’m a toddler despite being out grocery shopping alone. All fun stuff like that. Thankfully my wheelchair has a backrest that flips down, hiding the push handles, making it harder for strangers to push me.

But, despite not getting acknowledged, apparently the pain does show on my face when I walk, because generally people are a lot more friendly when I use my wheelchair, even if some are more genuine than others.

Another thing that has changed is accessibility. Now that is something I struggle with either way, but differently. Either way I can’t really use stairs. If I can’t find a way around it I will still walk them, but it hurts, so I’d rather not. But when I walk I can take an escalator, that’s not really an option with my wheelchair. However, because standing still is worse than walking for me, waiting in line is a hurdle when I don’t use my wheelchair and not a problem at all when I do use it. When I use my cane I always either have only one hand free, or have to hang my cane somewhere, which is annoying. When I use my chair I can either move or use my hands for something else, not both at the same time, but I can put stuff down on my lap. When I have to pack groceries at the register, using my wheelchair is most convenient, despite being low down. My wheelchair is also quite wide, so I have already had to ask shop employees to move stuff several times. But the most annoying thing about using my wheelchair when shopping is not being able to reach at least half of the items in a regular supermarket.

Sure, theoretically I can get up, but there’s a but. Firstly thanks to covid the supermarket that is closeby to me no longer has shopping basket available, and they don’t have a wheelchair cart. This means I have to stack all of my groceries on top of my lap (which often fall by the way), physically preventing me to get up. Then, maybe more importantly, there is the stigma ambulatory wheelchair users face. I’ve been dreading this stigma so much I avoid getting up from my wheelchair in public as much as possible. Between the punchline of a wheelchair user getting up an thus faking from the media and the push to recovery from healthcare, because why would you want to use a wheelchair if you could walk. I have to take notice of how much easier the stairs to my apartment have become since I put less strain on my joints to remind me that using a wheelchair is actually the right choice for me. Thankfully I haven’t had any comments on getting up yet, but it’s hard not to internalise a message that is so common. In fact, it took me hearing other ambulatory wheelchair users speaking up about their experiences to realise that it is even an option.

What is probably my worst experience so far is that of someone approaching me while out on a stroll. I am very lucky to have a nice option for a stroll near my home, where I on smooth asphalt surrounded by trees and no cars for most of the time, and it’s a nice distance, so I take that stroll a lot. One day I randomly get approached by a stranger telling me how he saw me on that path and there’s a lot of cyclists there, so he contacted the police. My gut reaction was immediately to argue that it is a footpath and I belong there, it’s the cyclist who are out of line. Then he told me he knows and that was his point, but I still felt accused so I repeated myself. Then he started to argue that he called the cops for my safety, because he sees me there a lot and he saw me get off the path earlier. Now earlier was about half a kilometer before and I’m not very fast. I got off the path for other mobility aid users, not for cyclists. I did not even encounter any cyclists that day. I chose my wheelchair to be able to handle some terrain, getting off the path is not a big deal for me in most places. So this is getting creepy. I tell the guy, who is now standing in front of me by the way, I don’t need cops and he starts arguing. Eventually we both just started repeating ourselves, and eventually he notices I don’t appreciate his “help” and starts arguing for other people’s safety. At this point he tells me “they wouldn’t want to get your disability”, which honestly sounded like a threat. So I made it clear I wanted to leave and I did. I still don’t like it that people consider me so helpless they feel the need to call the cops for my safety. Firstly I am fine and genuinely don’t need that kind of help. Despite being white I have absolutely never felt safer with cops around. Now I am aware that my white privilege keeps me fairly safe, but that doesn’t take away from the fact that autism and cops don’t mix. They don’t like me, I don’t like them. I don’t even care who they are as a person, police just shouldn’t exist. Don’t use me as an excuse for people to call upon such a harmful institution. Now thankfully they didn’t show up in the moment, because there was nothing going on they were going to show up for, but they might have increased their rounds. It still bothers me that the person who has made me feel the most unsafe regarding using my wheelchair was someone who claimed to care about my safety. It’s honestly unsettling. It’s hard enough to go outside without stuff like that.

I also want to address the “they wouldn’t want to get your disability” for a second. No-one is going to get my disability from an accident. Firstly, my disability isn’t going to go anywhere. Secondly, not all disabilities are acquired through accidents and acute trauma, while that experience is perfectly valid, it is far from the only one and disability as a whole is far more complex than that. Lastly there is the ableism to unpack, but I’ve gone on for long enough, so I’m not going to go into that today.

At the end of the day I still use my wheelchair. It is still the best option for me to use my wheelchair for certain things and I still need to gain arm strength and agility to make those things easier. If nothing else I will use my wheelchair out of spite, to show that yes, in fact, my wellbeing is more important than the feelings of non-disabled people. Sorry if this blog got a little heavy, it really wasn’t meant that way, but clearly it brought up a lot. If you read the entire thing, thank you so much. If you are disabled yourself and can in any way relate, please feel free to chat about it. If you are not disabled, thank you for showing interest and I hope you learned something. I hope to see you all next time. Bye!

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