(image of a very generic black and white flaming chalice, inside two rings, from uua.org)
(this essay was written into my phone during part of a Sunday morning worship service, then finished at home. It is the result of my very high pain levels and thus low tolerance for, well, everything today. The statements reflected within did not necessarily all happen today, and the ‘you’ does not refer to everyone, but to specific people I will not name.)
I walked into church today and the wide, cream colored walls had been covered in beautiful, large, framed photographs of nature scenes. I stopped short.
“Why photographs?” I asked. (Grammar was not being my friend today.)
“I think they’re pretty,” the woman handing out programs said, her tone implying that I had called them ugly.
She doesn’t understand.
I want you to.
I want you to understand that the glass and color and the fact that the photos are on every wall literally changes the space physically for me, and I don’t know where my body in space is, and it’s harder to walk.
I want you to understand that the dramatic change in the sensory environment feels like something crawling and clawing its way out of my skin. The large, familiar room feels like a stranger and my body and brain cannot reconcile it.
I want you to understand that when you say, “rise as you are willing and able” it feels like hot fire pokers in my heart as I’m reminded that I could once rise willing but am no longer able.
I want you to understand that when you don’t use the microphone it means you have put up a barrier and that you don’t care. Even if honestly, I could hear you without the microphone because of my super-sonic autistic hearing, I want you to understand that accessibility for all is just as important as accessibility for one.
I want you to understand that by the time I’ve arrived at church today I have already done a lot. I got up, I made and ate breakfast, I got dressed, I did medications and caffeine (weighing one against the other against what I’ll do) and dealt with the casual inconvenience of a local road race blocking my usual HP spot and spoon theory is a thing you should know about https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I want you to know that I had to change seats, as I frequently do, because our scent free policy has never been enforced.
I want you to know that thanks to autistic memory I recall, accurately, every single time you have hurt me, and I will never forget. And I know that as part of our church covenant I’m supposed to forgive but……I’m not sure I ever will. And part of this is because I know that people have never forgiven me for the mistakes I’ve made.
I want you to know that when, like right now, I’m engrossed in my phone and not the service it is this technology that enables me to stay in the service at all.
I want you to know that your story is cute and clever but unless you specify what exactly the metaphor is I think you just told a tale about sentient objects or animals that made absolutely no sense to me.
I want you to know that I was proud of myself because even though I didn’t make it through the service sitting in the meetinghouse I made it through sitting in the front hall (it’s actually called the narthex for some reason)* and listening to the sermon through the speakers. I was proud.
I want you to know that moving my arms and hands is really, really incredibly painful these days and as a result I can’t fidget or stim and that somehow affects my speech and other body parts. I want you to know that just because I can’t find the words to speak fluently today doesn’t mean that this is how it always is for me – it usually isn’t.
I want you to know that that I didn’t mean to knock that over or break that thing but I had to touch it the way you have to breathe.
I want you to know that I’m in pain. Constant, unending pain. I want you to know that on any given week I’m doing medication changes and seeing specialists and you have no idea how much time this takes out of my life. And unless you also have significant developmental disabilities and autism then you have no idea that the state/federal medical system I’m in is totally different for me than it is for you, just as I know that as a white person born fifteen miles from here my medical system is drastically different than that which a POC or an immigrant deals with. And I am lucky, lucky, lucky – I have better medical care than 99% of people in my situation in the United States, because (no offense other states but this is true okay) I live in the best state.
I want you to know that that I despise you. I despise you deeply and I am filled filled filled with towering volcanic rage that you can’t see how hard it is for me.
I want you to know that I know disabled people aren’t a group you feel the need to welcome, so you can stop pretending that you care.
I want you to know that I’m here anyway.
*okay so I just looked up narthex here https://en.wikipedia.org/wiki/Narthex and I’m utterly amazed because 1, that’s the east end, not the west end of the church 2, UU’s don’t believe in sin, never have, so how can we have penitents and 3, it’s not a porch. The bell, the organ, and other important parts of the meetinghouse are in the narthex. We totally shouldn’t be calling it the narthex but my particular UU church was built in the 1830’s by a large university nearby (after they tore down the old meetinghouse and took the land) in something called a neo-gothic style, meaning that they used local wood and now-rusty nails (we know this when we had some is-it-falling-down work/inspections last year, I assume they weren’t rusty when they were put in) to emulate the great cathedrals of Europe, so narthex it is. Narthex would be a great name for a service dog. And now anyone who knows anything about UU church buildings probably knows where I go. Please don’t reveal it here, thank you.