Being Disabled Is Exhausting
Or why I'd like having an assistant to help me with some daily tasks.
Hello! Deep apologies for being MIA these past few weeks. I’ve started a new job and you can understand how mentally draining that is. And apart from that, there is the usual life stuff, the writing projects that I seem to never have enough of and oh!, I re-started going to piano lessons. Overall it’s been fun but very busy.
How’s your start of the year been so far? Any good stuff? Bad stuff? No stuff at all? Let me know in the comments.
There have been many instances, every day actually, where I would just sigh in frustration and yell in my head “it sucks being disabled!”
I know, there are really many, too many, instances in which we can or do think that, inaccessibility and ableism being the main ones. But I’m talking about some smaller, nuanced cases, the ones that can’t be solved with more access or awareness.
It’s those subjective, daily instances that come with the inherent characteristics of a disability and that can be different from person to person. It’s the lack of spoons, the energy consuming activities, the chronic pain but also the personal limitations, whether physical or mental.
My physical limitations make it hard for me to execute certain physical tasks, especially the dressing and undressing part, and especially the dressing and undressing of the lower part of my body because my legs are much more affected. I can’t bend properly, I can’t bend my knees very much, I can’t crouch, I can’t bring my knees to my chest, all such things that become fundamental when you have to put on trousers, socks, shoes, etc…
Those are the moments when I, more often than not, cry in frustration and wish — more than in any other circumstance — that I wasn’t disabled. Or that I had more mobility. Because it’s not just hard, it’s also painful. It takes me ten times longer to dress in the morning or undress in the evening. That’s a part I have to consider when I have to time manage my daily routine and how long it’ll take me to be ready. It makes me very grateful that I have a remote job and work from home most of the days, so I can stay in my PJ.
Also, it doesn’t really help that I am not the kind of person who is fine with putting on a pair of joggers, a hoodie, snickers and go out. I mean, I do that when I only have to go to the pharmacy down the street or to the supermarket, but not when I have to spend some time outside or when I’m meeting someone.
I have a peculiar taste and a personal style. I like clothes; not the latest fashion trends, but just fashion and style in general, and sexy garments and an aesthetic that describes my kind of personality. I love wearing platform shoes for example, but those are pretty hard to put on when your mobility is limited, and I love fishnets and tights paired with a nice dress or skirt.
Some might say that I shouldn’t complain then since I’m putting this on myself and “easier” clothes to work with are available, but even though I’m disabled, I’m also a young woman who likes to feel good in her clothes, who feels empowered through style choices that look good on her and enhance her character, I like being complimented for what I’m wearing. Sue me!
And, in any case, even putting on a pair of joggers and trainers is hard, so hard for hard, at least I’ll wear what I like, instead of feeling like a potato in a sack.
But, not going to lie, it’d help a lot having a personal assistant who could help me with just this thing. Not many other things distress me as much. Well, maybe when I drop something on the floor and can’t get it without some kind of assistance.
It’s a tough life.
What about you? Is this example of mine too particular? What are the little daily activities that make you yell “being disabled sucks!” with your whole heart? Let me know!
For me, after taking a shower, when I perch on the toilet seat to dry off (because standing is hard), then find my legs are too weak to stand up. That sucks.