Dear new spoonies, in particular:
When you first ‘realize’, and put words to the fact you are disabled, and you find other disabled bloggers, especially those of us who have known for awhile, you might start comparing your disability to ours.
Please, please don’t. Everyone experiences their disabilities differently and shares that experience differently. When you send us messages starting off with stuff like “my disability isn’t as bad as yours but”, all I hear is “I’m conditioned to think that I have it easier than everyone else, that I’m not REALLY disabled, that I can’t actually identify with being unable to do something.”
You’re allowed. Seriously. I admit I’m going through a flare up right now, therefore my pain is spiked. And sometimes these can last for ages and get worse, and honestly some of my physical disabilities ARE worse than they were ten years ago. But my mental health is light years better, from finding words to put to my conditions and triggers and changes I had to make. Because I eventually, with struggle, made those changes and now am surrounded by people who care about me and don’t dismiss my disabilities.
And its tempting to think we’re “more” disabled because we say we can’t do things. Here’s the thing: sometimes “can’t” does actually mean literally can not, there is no way, we would collapse or have a breakdown or we can’t move our bodies.
But I’ve learned to use “can’t” as a shorthand for a lot of stuff. Can’t means if I spent the energy now I would be in pain later. Can’t means that event is not accessible enough for me, that I would be highly uncomfortable or possibly triggered. Can’t means it would be so difficult and take so long to do it would be pointless for me to be the one to do it. Can’t means I’m putting my needs first, and I’m understanding what my needs really are. Can’t is allowing myself to live my life as a disabled person and not pushing myself to pretend to be abled.
I also know it took me a long period to realize how prominent my disabilities had been throughout my life, and that I would constantly conveniently forget the worst of my symptoms when things were going well, because I wanted so badly to be “getting better” or to not actually be disabled. Things go in cycles. When you’re busy trying to be abled, you can’t allow your ‘setbacks’ to be because of disability - or rather, because of the inaccessibility of the world and the ableism of those around you.
Identifying as disabled can feel like you’re trying to avoid responsibility, so you don’t want to feel ‘too disabled’, or rather you want to feel like you are responsible for the shit abled people have done to you (systematically or personally) because PEOPLE TELL YOU YOU ARE, people SAY we are responsible for all the abuse we face. We aren’t. You aren’t. You aren’t lazy or weak or forgetful or clumsy or stupid, you’re disabled.
So feel free to ask me questions but please don’t compare yourself to me. Your understanding of your disability is not only your own, it is still forming. You may also have experienced abuse in your life that you do not see as abuse, and I would encourage you to learn more about ableism that occurs on an interpersonal level (and especially the book Toxic Parents) - abuse victims/survivors often feel like we need to belittle our own needs and suffering, to act like they don’t exist. Because we aren’t supposed to exist, and we certainly aren’t supposed to write about or sign about or speak about our issues, we shouldn’t communicate we have trouble at all. So we learn to communicate our needs as meekly as possible, and to think that they aren’t needs but ‘wants’.
I hope you learn with time, truly and really, that your needs are important, that you have the right to tell others no, that you are the only one who can truly represent your own needs to others and to get real accommodations, that you don’t need to ‘contribute’/work/go to school/participate in capitalistic ableist ideas of success in order to be happy and yourself, and that you CAN AND SHOULD put yourself first.
Take care <3