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Do you struggle with taking up space as someone with a disability?
Space — we all need it, we all have a tough time finding it some days. But for people with disabilities, like SMA patients, it can be harder to find, acquire, and take up comfortably with an uncompromised and unapologetic peace of mind. This is true both in physical and emotional situations.
A quote from John Mulaney comes to mind: “You could pour soup in my lap and I’ll probably apologise to you.”
So, I’m curious about whether you’ve struggled to take up space in the past, why, and how you’re doing now. In the spirit of the topic, feel free to share as much as you’d like. I’ll be doing so in the post below.
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5 Replies
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Some days I do Sherry. But fortunately I am surrounded by people who speak truth and worth into my life.
Thank you for how honestly you share your own challenges in this column.
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That’s great! Would you like to share how the people around you help you in this regard?
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Interesting question, Sherry. Thanks for posing it.
So, I’m a little on the, ahem, older side at 62 and was formally diagnosed with Type 3 at 16, meaning I’ve been living with SMA for over 45 years. Throughout my journey, I’ve experienced a lot of emotions and one of them is the feeling that I don’t or might not belong somewhere, and that can be further magnified by “taking up space”. I will say that I’ve gotten over that, but still periodically get annoyed with “normies” who completely disregard my space. Most people are okay, but the more crowded the situation or event is, the more people seem indifferent or rude. I think this comes from human psychology/sociology as much as anything else. There have been studies where people in groups behave differently than when more isolated. In other words, being in a group (crowd) provides anonymity and cover for their actions. Not always the case, but seems to be more often than not.
That said, I used to feel like I was unfairly taking up more space than I needed to, whether that was public transportation, elevators, restaurants, baseball games, you name it. But, my attitude now is that I have just as much right to be there as anyone else. My money spends the same, and my sense of community and enjoyment are just as real as anyone else’s. I’m just as much of a person or human as they are. So, to be blunt, eff them if they think otherwise or try to marginalize how I should feel by forcing their discomfort on me. It’s their problem, not mine, and I don’t allow them to control me or how I feel. That doesn’t mean I’m rude, but I’ve accepted my situation, believe I have value and rights as a person, just like everyone else, and don’t let their looks or comments, based on their ignorance or biases, affect me.
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Absolutely. Anytime go into an over-packed crowded restaurant and have to ask patrons to stand up so can scoot wheelchair by. Every-time i try to enter a small shop and find myself stuck in an aisle and have to apologize as i carefully try to back out without running someone over or knocking over a display. Even in my own home when for instance am in our kitchen and am not fully under our table, people complain that i am in their way even though i was there way before they entered the room. When shopping or riding my chair in public i have to be super alert because the average person does not watch where they are walking and will ram right into me. i’ve come to a very low estimation of humanity in general …so i guess the pleasure of always being in the way of jerks and running over idiots who don’t watch where they are going helps keep me going .
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I once injured my foot because someone came into the elevator before I was done turning to exit. Oh gosh, the issue with crowds bothers me to no end some days. You’re definitely not alone in wanting to ram people down sometimes – though I do try not to do that, in order to avoid confrontation. 😅
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