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#self advocacy is so necessary but it's so fucking difficult and scary
neverendingford · 15 days
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#tag talk#vent#wow okay so turns out my psychiatrist didn't ghost me she just put in the med refills without telling me#so I was waiting for her to message me back like a fucking idiot because expecting professional communication is apparently too much#I genuinely think I might cry I'm so fucking... not even mad. just incredibly let down#the autistic realization that you do in fact have to do everything yourself because you can't trust anyone to give you the support you need#you have to put in the extra work constantly just to survive because the environment is so incredibly hostile without even meaning to be#I didn't know I needed to check my prescriptions again. I didn't realize she would just add a refill without telling me.#the thought never crossed my mind. so I accepted my fate and experienced three weeks of hell#and I'm such a fucking doormat that the strongest word I could use to describe it to her was “interesting”.#I laughed and brushed it off like it was nothing because I was too afraid to say “I went through hell and you're responsible”#and I know my best option is to just suck it up and go back on the meds but I'm so fucking scared to#I'm so fucking scared of going back on. getting it in my system. and then somehow getting cut off again#scared of relying on anything but myself because I know it'll just let me down again#I genuinely felt the worst I've ever felt. not just physically. my brain was on fire.#my brain was burning and all I knew to do was endure the pain without saying anything.#because I didn't know that I should follow up. I didn't know how to navigate the system. and I suffered for it.#self advocacy is so necessary but it's so fucking difficult and scary#and I laugh and joke and pretend to be this confident easy-going careless persona when I'm really not#I'm fucking terrified of bothering people or upsetting them.#I had a whole grand speech in my head about how I would hold her accountable for this mistake#and then the moment came and all I could do was laugh it off out of fear.#and all I can do is cry about it and feel like a fucking failure#I know I should go back on the meds but I'm so fucking scared I don't want to feel like that ever again#I lost who I was. I lost my sense of self. my body stopped working in any of the ways it's supposed to#I've only just now come out of emergency power mode and I'm terrified of it happening to me again#I've been sleeping a ton recently. I'll wake up really early in the morning and then work on going back to sleep#my body is a machine and I've learned the proper input codes to make myself go to sleep#but I'm back to depression napping for 12-16 hours. entering recovery mode and trying to fix the damage I've experienced#I keep having really bad nightmares though. I know I need the sleep so I put up with it but it sucks so fucking much
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hazel2468 · 4 years
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Okay- making a post of my own because I don’t want to derail and the original was specifically about autism BUT:
I get the whole “Oh wow, it’s so BRAVE and SELFLESS and SELF-SACRIFICING that you work with (insert ND/Disabled people or other group here) people!” a LOT. Whenever I tell people that I’m a Social Worker, and that I am currently working with a disability advocacy group, I hear that. And on the one hand, yes, let’s appreciate people who provide basic, necessary services and advocacy to underserved groups (and pay them more- pay teachers and aids and the like MORE).
But on the other hand... this shit is BASIC. I don’t think it’s some sort of massive sacrifice- I’m working to provide the MOST base-line things to the disabled community. Because the system is fucking built to keep them out. It’s a necessary social service, not martyrdom, and it is REALLY fucking gross that people act like I deserve some special praise for working with disabled and ND folks.
I myself am ND and disabled. I’m chronically and mentally ill. I have ADHD and probably some other shit going on. Of course, people assume otherwise, because I don’t fit their idea of what a disabled person looks like, and they also often assume that disabled people can’t do things like be Social Workers (which... yes we can and we do, we do a lot of shit). And when people try and act like I’m some kind of angel of hero for doing my job- my very, VERY basic job, it irritates me and pisses me off to no end.
I shouldn’t be getting praised for working with and around disabled and ND people because we’re just fucking people. I get treated like I’m doing some... Some horrible job that “must be so difficult” and “wow I bet that’s hard to manage” and “it’s so brave of you to do that”. Brave? I make data tables and phone calls and take satisfaction surveys from clients. But I get treated like some kind of saint because I’m working with people who, for some fucking reason, the general public has decided are massively non-compliant (a phrase I have issues with, but that’s another post), impossible to work with, and scary.
Look. If your reaction to hearing someone works with disabled people (or homeless people, or any other marginalized, underserved group) is “wow that’s so brave”... Why? Why is it brave? What makes it more brave than any other customer service? Why do you assume my job is difficult and taxing in the ways that you do? Why do you give me that look (and I bet a lot of y’all know that look I’m talking about, the “oh dear that must be so hard you’re so strong and brave but in a patronizing way” look)? WHY are you so shocken when I tell you that actually, I love my job, I love speaking to our clients over the phone, hearing what they have to say, I love learning more and more about what’s going on in the community- in MY community- right now?
Disabled and ND people are not “difficult”. We’re not some kind of unique burden. We’re people with different needs who exist in a world where those needs are not only not met more often than not, but are treated like something extra and annoying, no matter how basic they are. And folks who work with ND and disabled communities (and any other marginalized/underserved community) aren’t saints or angels on earth. We’re people doing a job, hopefully a job that we’re passionate about, hopefully a job we enjoy, but it’s a job. And we’re just working with people.
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