So here’s the thing. I REMEMBER being an able-bodied, obtuse know-it-all just like the rest of you. I remember, way back when I was a kid, thinking “a wheelchair would be a BLAST!” and then being diagnosed with MS at 28 and planning for the future – “and I’ll get a scooter if I need to and we’ll decorate it and trick it out and it’ll be fun!”.
I was even right there with the rest of my annoyed family, saying amongst ourselves, “We need to get Grandpa into a wheelchair. I just don’t understand why he’s being so irrational about it.”
And now here I am, about 10 years later, siding with Grandpa. I wish he was still alive so we could back each other up.
I have no decent comparison for you. The best I have is, if we all lived someplace tropical and it was somewhat okay to be naked in public but most people still chose to wear clothes, and I came down with this condition where I HAVE to be naked. But I’m a private person and would REALLY rather not be naked in any way (100% true). And all you other people don’t see how 24/7 nudity would be a bad thing, or at least you say that to try to make me feel better. So when I express my dislike of needing to be naked you trot out the sunshiny, patronizing spiel – “come on, Sue! I would LOVE to get to be naked all the time! It would be so fun! Liberating!” and then amongst yourselves “Why is she being so stubborn? It can’t really be that bad. My cousin/grandma/friend loves being naked.” (aside: you’re welcome for the mental image of a naked grandma)
Now honestly, do I think you’re trying to be condescending? No. Do I feel like you are actually trying to understand my point of view? Also no.
The thought of a scooter or whatever feels like that. Naked. People would SEE that I didn’t just have an accident playing soccer or basketball or some shit you cool kids do. I *maybe* have let random strangers believe something like that when they come up and ask me why I’m limping (happens about once a month) –
Random stranger: “What’s wrong with your leg? Did you hurt your knee playing sports?”
Me: “Yeah, something like that… anyway, have a nice day!”
I mean, look at me currently. Do I LOOK disabled? As long as I just stand or sit still can you tell anything? No. I go way the hell out of my way to look my best (aside from my total lack of actual style).
Do you have any idea what kind of a shitshow being on a scooter would be?! How much “OOOOHH! Poor thing! What’s wrong with YOU?!” I would get? Or worse – “You don’t need that. You’re not sick. I just saw you stand up – you’re faking. Shame on you.”
Naked. And open to even more comments from total strangers because that’s what people DO. Gives me the heebie jeebies just thinking about it.
Sing it with me!
🎶 NOOO THANK YOU, NO NO THANKS I’M FINE, NOOO THANK YOU, EFF THAT SHIT NO THANKS 🎶
Eventually I WILL get one and no doubt will say a lot of “oh, I don’t know why I put this off for so long,” but right now, no. And when I feel like people are trying to push me into it it makes me say “No. Thanks. Duly noted, I appreciate your concern, but.. hey, fun idea! Why don’t you worry about yourself?” all the more.
I don’t have control over a lot of things so here’s where I’ll take it (<<< aaaannd that right there is probably the moral of the story).
So. That’s my semi-bitchy/sweary explanation for why I’m an obstinate cow. I hope you take this and, rather than getting your panties in a knot or saying, “Poor Sue. She’d be so inspirational to all us able-bodied know-it-alls if she’d just be nicer and swear less,” I hope you instead say, “That does sound like a crap deal when she puts it that way. Maybe that’s why Grandma got all ragey and started biting people when we forced her into a wheelchair.”
Okay. Maybe not exactly that.
But this is my control issue, one of many, I come from a long line of control issue people and if it helps you understand the perspective of other stubborn people with disabilities in your life then this has served its purpose.