As I come out about my disability and my situation I hear a lot of frustration and bewilderment from others that this has gone on so long. Which is better than invalidation, but not ideal, because I have done everything I can. Maybe I should start asking that people help me write letters to our representatives about my situation.
My online support group has plenty of people from other countries to offer perspectives on the disability process in their countries. I was told in Sweden fairly recently someone was denied disability because they kept an online blog.
For obvious reasons, this alarmed me and continues to. I’m paranoid about everything I say and do, knowing it’s all under a microscope, that everything can be used against me in this case. How horrible would that be, to have your whole life under a microscope in order to decide whether you deserve to survive?
Claiming that because someone keeps a blog they can work—that would be like saying because I can keep a diary I can work.
The people determining if someone who can work are people who can work. There are plenty of things necessary to work that people who can work take for granted and have the privilege of being unaware of, just like people who can walk probably don’t notice every single small step-up they take. And likewise deciding whether or not someone has privilege should not fall on the privileged—because you’re not necessarily aware what you have. People who can work are not necessarily hip to the differences because they don’t understand what it’s like to not be able to work, and to very clearly be aware of those glass ceilings and walls all the time.
There are a lot of capacities necessary to work that aren’t necessary to do one task one time, or even repeatedly. There’s the capacity to be ruled by another’s schedule and needs, the capacity to put up with people whether you want to or not for a certain number of hours per week consistently, among many other things. A lot of things people take for granted.
I’ve noticed if a person can’t keep a job and isn’t necessarily able to articulate why, it’s open season on them, culturally and socially acceptable to sneer at them with disgust and tell them to just suck it up, quit bitching, and grow up. Maybe that’s what it took for them to get a job, I don’t know. Any time one assesses what it took for them to get an opportunity or achieve something, there’s a huge possibility of lack of awareness of the role privilege, position in life, and supportive friends and family played in achieving that. It’s such an American Dream thing to chalk it all up to individual effort, but even in a person’s own life, no accomplishment exists in a vacuum. A lot of it is not up to us, so many people without the good fortune, connections, and privileges we have cannot reach those things.
The people who will be judging whether or not I’m capable of making an income aren’t really in a position to point at something I do in my life and say that because I can do this one thing, I can also do all the other things necessary to get and keep a job. Keeping a diary or making forum posts doesn’t mean someone could make money from that task. That’s ridiculous. There are so many other tasks necessary to make money that people who can do those things have the privilege of not being aware of.
Like: sustainment. Sustainment is a huge thing that people who just look at a snapshot of my life don’t think about, but I do, all the time. One can do a lot of things to save one’s life—hold one’s breath, run flat out, bear unbearable pain without screaming, withstand a siege, maybe even kill someone in self-defense. But after a while it’s physically not possible to do anymore. I’m great at mustering Herculean effort to do things way outside my comfort zone—for a short while. I’d be like a sprinter. But in terms of marathons, I crumple. And if I push through the pain I start to die. This isn’t about getting past a speed bump, this is hitting a wall and continuing to push.
I’m great at sudden huge bursts of energy right up front, which is helpful when learning a new skill, but in terms of sustaining that effort, eventually there is a dip again in my resources, and my symptoms can only be held at bay so long. I’m pretty great in emergencies, as I know from unfortunate experience. But when those emergencies go on for a long time—as in caring for dying relatives and loved ones (which in my case aren’t necessarily the same)—it destroys a person. I noticed even onlookers got tired and stopped offering support after a while as the emergency of my husband’s life-threatening illness dragged on month after month, and with my father’s protracted death too, but that’s another rant and shall be ranted at another time.
The fact that I did something last year, a month ago, yesterday, even an hour ago doesn’t mean I’ll be able to do it again now. I can’t even count on my own capacities. That’s frightening, demoralizing, and difficult enough to deal with, without having that overlooked by people in a position of power over my survival.
And take these rants. I can pour a lot of time and passionate effort into writing angry rants and writing feelingly about my symptoms and experiences—like here—but that doesn’t necessarily mean I could write about things or in such a way as to make money off my writing, any more than someone who can write to-do lists and Facebook posts could be a paid writer.
Virginia Ridley, and other people with temporal lobe epilepsy (TLE) whose symptoms include documenting every single detail of every day including a log of urinary evacuation and bowel movements (really) in writing, would not be able to sell their scribblings to a publisher any more than I could. It misunderstands the function and extrinsic monetary of the act of writing deliberately.
I suppose the point is that when someone doesn’t want to believe me, or wants to prove that I can do something, their confirmation bias will guide them unerringly to some tiresomely ‘rational’ explanation that does not prove their point but is enough for them to justify taking the action of denying me.
It frightens me. I know human beings can rationalize anything. Human beings rationalized everything that was done to me growing up the only child in a cult, removed from school and contact with people outside and subjected to educational neglect for years. I can definitely see how that would be making this entire process triggering for me. I can see and feel myself struggling more and more as this drags on.
It’s so hard to sustain dignity and well-being in such a situation. You can’t know how hard it is for me—but you can listen. You can read. And if you are, somewhere, out there, thank you for that. And if not—at least there is a chance I might one day be heard, that these words might one day be read, maybe even empathized with.