I’m not an angry person. I’m the type of person who you would assume has a bad temper because I’m naturally argumentative but anger is too physically exhausting for me. AB people rely on anger all the time, easily because of their entitlement of course, but also because they can peace out of any situation.
They can walk away. They can leave the room. They can leave the building. They can hit people back. They get the benefit of doubt. I can’t leave; not on any level. I literally can’t leave the house on my own and going into another room only makes it worse when you are disabled. Everyone is entitled to speak for you and make decisions for you even if they aren’t legally supposed to. When I go to the ER I tell the staff I have MD and then I have to find at least two AB people to ask the nursing staff to change what they had written down, MS, to my actual diagnosis of MD. No one believes me because I sit in a wheelchair so no matter how emphatically I say “not MS, I have MD” I still can’t be trusted to decipher between the two of them.
Auntie L has been “done with” my mom and I for a while now and yet she is the only person medical and social professionals seem willing to talk to. Despite going into Social Security and getting my competency the first thing people want to know is why are they talking to me and not an AB who’s advocating for me?
Assholes aside, like my social worker who has refused to speak to me at all, everyone just assumes disabled people are the least capable of all people. Even about disability. Especially about our own disabilities.
AB people are angry on my behalf when I tell them things that I’m going through which is validating I guess but they then insist I should do something, that I should fight for my humanity. They don’t want to help or anything, but I should totally do that.
They don’t understand when I tell them this is my life and this is the way things work; this is the way things work for all disabled people and it’s much better than it ever has been for us which doesn’t say a lot. I refuse to be a vigilante and then ABs get mad at me. I need to deal with the 24 hour job the state gives me for being disabled as well as having health problems and manage being a member of the most oppressed group in the history of humanity. I don’t have a lot of time on my hands.
This is too much a part of my everyday life that it could never really make me angry but I’m becoming more and more impatient, especially now that I have to take care of my mother who has become disabled. I suppose it’s because I have had to speak on her behalf lately and I can sympathize with her situation so when people act the way they have my entire life is not really about me anymore so I feel guilty for letting it slide.
And then I talked to other young disabled people who are going through all of the same things I went through and nothing is getting better, some things are even getting worse. I suppose the real source of my anger is my own fault because I’m having a hard time getting past the guilt of sheltering NTABs my whole life. If I had demanded respect or insisted people listen to what I had to say maybe things wouldn’t have to be this way anymore. I feel complicit in stripping my peers of their humanity. I can’t imagine there is a worse type of guilt but as someone who doesn’t feel guilty often even a little bit of this shit is too much.
I did it all to survive but I never much cared about surviving so it’s not a good excuse. I wasn’t supposed to live until 30 so whenever things would get bad I could tell myself “it’s not going to last much longer” but now I hit 30 and I don’t have an exact year to shoot for anymore, it just depends on how healthy I can remain and my health depends on being stress-free so even though I still tell myself it’s all going to be over soon I also did that terrible thing where I became an adult and realized even passive behaviors have grave consequences and it’s usually the burden of the following generation.
I’m melancholy because this week I have to interview a caretaker, I have to take a daylong appointment at the bank, another daylong appointment Social Security, I need to find a way to make money to pay off last month bills since my SSI got dropped to $3 after I went in to get my competency. I have to find a way to barter things in such a way that my mom and I can survive this month.
Now auntie L texted my CT Zari telling her she was going to pick up my mother sometime this week to take her to lunch. She didn’t know exactly when or what day because she’s very busy and won’t know until the mornings what her schedule will be.
Well guess the fuck what?
I never know if on a given day if I’ll be able to get out of bed or eat. I never know who exactly is going to be here and when because even people coming here for a paycheck come on their own time. I never complain but it’s been explained to me many times that the pay isn’t great and despite this being a job I need to be thankful for everything anyone does for me because what would I do without them?
They’re right, I can’t do anything without them. They make sure of that.
I never know on any given day if I’ll be okay or if I’ll be in so much pain I start to disassociate and what causes me pain and illness does not factor into any decision because it’s not important to anyone but myself.
Auntie made it clear she does not care about my well-being. She thought it was absurd when I asked her not to let herself into my house and wake me up to scold me about how unlovable I am. I was so incredibly ill after that whole thing I was starting to hope I was actually just dying and now I’m starting to feel that way again.
I’m supposed to overcome my disability to make my disability easier to manage for people who I don’t even want in my life. I have to overcome any physical sensation, any emotional burden, any independent thought.
I can’t do this anymore. I just can’t.
I promised not to kill myself if I found a way to manage things and this is no longer a way to manage things. It may work for everyone but me but at this point I realize that not being selfish is the most selfish thing I can do.
I’m not all suffering and I’m not selfless.
I will not live like this any longer.
I’m already in pain, I’m already hungry, I’ve never had any agency, what do I have to be scared of?