I am a very kind, understanding person most of the time. But lately, quite a few frustrations have been building up inside of me, mostly about how people treat me differently because of my chronic illnesses and some of my struggles.
It’s usually just a short phrase – an interruption – someone quickly talking for me or even over me. Sometimes it’s a slight scolding, someone telling me what I need to do or shouldn’t do.
I tend to let most of these annoyances or frustrations slide, outwardly. I stay silent because I don’t want to make a scene. I don’t want to be seen as over-sensitive. I also don’t want my concerns to be perceived as an attack on someone just because they didn’t happen to know something. And of course, I don’t want to be the “PC Police,” zipping about with sirens blaring.
But man, some of these things are really starting to get under my skin. I know they also tend to bother many other people with disabilities, so I figured it’s time to get my three biggest frustrations out there, along with an explanation of why they anger, annoy, or hurt me.
Let me give you a few real-life examples. We’re talking about cars, and someone says, “Oh it’s simple, just shift it quickly into reverse, and then…” I’m listening and interested in the conversation, but then someone else jumps in and says, sometimes in a hushed voice, “Oh… but she can’t drive.”
Why did they have to do that? If someone had said, “I was thinking about having Michelle pick me up at 8,” it might be appropriate to offer up that information, but in this context it’s not necessary. It didn’t add anything to the conversation. It actually interrupted the flow a bit, taking the spotlight
off the person speaking and pointing it at me and one more thing I can’t do.
Once, during a conversation about food choppers in industrial kitchens, I didn’t have much to say on that topic since I’ve never worked in one. However, I do use a small chopper and slicer in my own kitchen, so I inserted my thoughts on those. Once again, someone had to come to my defense and say, “Well she can’t physically chop vegetables herself with a knife.”
That wasn’t a piece of information I was going to offer up in that instant. I didn’t really want to
change the conversation to be about me; I was just trying to find a way to add my voice. And the thing is, I technically can chop vegetables with a knife, it’s just very hard, painful, rather dangerous, and yes, there are definitely days and moments when I cannot physically do it.
These might seem like really small things that shouldn’t get under my skin, but I don’t like constantly being reminded that I’m different than others, or that I can’t do certain things. I also don’t think letting people know this information will help them understand me better or make the conversation
go more smoothly. Sometimes it just creates awkwardness, and makes it seem like I can’t really speak for myself.
2) When people talk about me like I’m not actually there. This happened to me just last month, while I was in the security line at the airport. I was using a wheelchair and my sister was
pushing it for me. We made it to the little conveyor belt and started removing our shoes, belts, and all the other things required by TSA.
A stranger came up and asked, “Hey, is it OK if I cut in front of her? I have a flight that leaves in 20 minutes and I have to rush through the airport.” I thought that was a totally appropriate question to ask, and I was happy to let her pass since I am, indeed, a bit slow getting through security checkpoints. However, I was taken aback for a brief second when I realized she said “her” instead of “you” or “y’all.” I responded with, “Yeah of course, please do!” with a smile and a slight gesture for her to go ahead. For just a second or so, she seemed completely shocked and a bit startled that I had been the one to respond.
This actually happens quite often to people with visible disabilities. I don’t know if it’s because people are scared to talk to us because we’re a bit different, or if they assume we might not be able to comprehend situations or speak to people. Or maybe it’s a completely different reason I haven’t yet cracked, but it is always unsettling to realize that people talk about you when you are right there, without seeming to acknowledge your presence.
Speaking for someone when they are right there adds to the stigma that people with disabilities are incapable of speaking for ourselves. If others see it happening, it might lead them to assume it is best to automatically speak to a caregiver or person with them, instead of the person themselves. And once that happens, the cycle of being spoken for, over, and about just keeps going.
Please talk to us! Even if you doubt we’ll be able to respond or acknowledge you spoke, a hello and a smile is a common courtesy I believe should be offered to anyone, regardless of age, race, gender, or ability.
Another example: I was out for lunch and drinks with a few people and after a while the person who drove me said, “I have to get this one home.” That stung quite a lot. I was being talked about like I wasn’t even a person, or like I was a misbehaving toddler or a spouse who had too much to drink.
I wanted to snap back and say, “Hey, why do you think that? Maybe I’m having a good time and want to stay longer?” But I didn’t feel like I had the emotional strength, and I also felt like I’d be butting my way into a conversation that I wasn’t really a part of anyway.
Yes, I was having a pretty bad pain day. Yes, I was having issues with some of my other symptoms. And, yes, this was probably fairly obvious to others. But I was enjoying my time out, and I am capable of saying when I want to or need to leave. Even if you think it’s best for me to do something, please ask me before making that assumption. I probably had about 30 more minutes worth of energy to use at the restaurant. Trust me, I keep really good tabs on what my body needs.
On the way home in the car, they told me I just looked like I was hurting and it would really be best for me to leave. I wish we could’ve had that conversation while we were out instead. I appreciate that they were concerned about me. Maybe they didn’t want to bother me by asking. But the phrase “I have to get this one home” just sounded negative to me — almost like they didn’t want to leave, but I was dragging them away. Or maybe they wanted to leave, and used my condition as an excuse.
Maybe I’m being a tad dramatic with my suppositions here, but those words bothered me for many reasons. Being talked over adds to the stigma that those with physical disabilities are unable to speak for themselves and make decisions independently. It also makes me feel voiceless, and I’m guessing not too many people enjoy that.
3) When people parent me and ask questions like: “Should you really be doing that?”
I don’t need special treatment, I only need the accommodations I will request myself. I’m not fragile; I don’t need to be protected. I know my body better than anyone else, and I know my limitations. I know what I am capable of doing and what my body can withstand. I don’t need to hear something like: “Are you sure someone with your condition should be doing that? It’s a really bad idea.”
When I’m having a good day and feel like fully taking advantage of the chance to finally be a bit spontaneous and step up onto a little rock and pretend to balance, or do some other silly, slightly childish thing, I’m going to do it! I have to find my smiles wherever they’re at.
I have the amazing privilege of having good days where I might even be able to let go of my cane for a few fleeting minutes and pretend my body is a tiny bit like it used to be. I don’t want to be scolded for doing that! I wouldn’t put myself in danger and randomly do this on a regular or bad day. So when someone voices concerns like this, it acts like a weight, dragging me away from the happiness I found and exchanging it for a place of otherness and inability.
In addition, being “parented” by others gets annoying. I am adult, and having voices constantly chiming in on what I should and should not do makes me feel infantilized.
So, to sum this up: I’m getting incredibly frustrated with being spoken for and being spoken over.
Half the time, the things people tell others for me and/or about me are actually wrong and not what I want, think, or need!
I was shy for most of my life. I don’t like confrontation. So if someone’s eagerness to help me is misguided or uninformed and we’re in public, I’ll most likely choose to let it slide. I don’t want anyone to get angry and defensive or say I’m ungrateful. It took me forever to be able to find a voice and be OK with saying what I need and what works for me, as well as what is difficult or impossible for me. Now that I’ve started being a bit more vocal about my struggles, so many people are trying to be helpful, which is awesome!
The thing is, in their eagerness to be helpful and aware of my limitations, sometimes they’ll bring them up in a way I don’t really like. That’s not only frustrating for me, but it’s also embarrassing. Most importantly, though, it perpetuates a stigma which will only continue to drag people down unless we work against it by making small, subtle changes in how we interact with others.