Family means everything to me that it means to most people, but it also means more things.
Which means when I use terms like birth family I am not using them the way some people use them. I am not using them to either make it more or less family. All of my family is family no matter how they came to be a part of it.
I do not like using the words chosen family. I think that is a wonderful concept for those who experience it that way. It’s not how I experience family at all, no matter who the family are. I have not chosen a single relative, whether biological or not.
I won’t get into what makes someone family if they’re not biologically related. I’d never finish the post.
But love is a lot of it. And being in my life in certain ways is a lot of it. And I’m incredibly grateful to everyone who has become my family in this manner.
But the important part.
The really important part.
Having non-birth-related family does not take away from either my relationship with my biological family, or my relationship with my non-biological family.
And I do not, in my head or my heart or anywhere else people use as words for thoughts and feelings, I do not put either biological or non-biological relatives as more or less important, more or less loved, or more or less part of my family.
You’re all family.
And I love y’all. Every single one of you.
And I’m sorry I couldn’t make you the post you deserve.
But I did my best.
And the post got written.
And that’s something.
No, it’s a lot.
But thank you all for being in my life and making it better even though I am terrible at keeping in touch with other people. You all matter to me and having, say, a second mom, doesn’t mean I don’t also have a first mom. and these are all just bad translations of family relationships. But the big thing: More family means more people I love, it doesn’t mean dividing people into greater and lesser parts of my family. And yeah I don’t get along with everyone, but that’s true of every kind of family I’ve ever heard of.
Thank you for being out there.
Thank you for being my family.
Sorry, again, that I haven’t been able to make you the post that you deserve. But I love you, both people I know and people I don’t. people I’m related to by “blood” and otherwise. And again the reason I don’t use the term chosen family is because I didn’t pick anyone out any more than my biological family picked me out. My non-biological family are no more chosen than my biological family, and chosen doesn’t make anyone better or worse than anyone else, or more or less close to me, or more or less loved.
Also I have both immediate and distant relatives, and living relatives and ancestors, within my non-biological family. Just as there are in my biological family.
So. All of you: Thank you. I love you.
So I didn’t used to be. But I’ve been reliably informed by someone with severe scoliosis that the proper slang disability term for people with weird spinal curvature is twisted sister.
I love it.
It doesn’t make up for what osteoporosis has done to my back1. But almost? Maybe.
1 It’s kind of done a number on things. My bone density is off-the-charts low. As in, they told me my hips were equivalent to about 95 years old, so I asked about my spine and they said they didn’t have a chart that went that high but that they’d guess it might be a normal density for a 115-year-old. So I’ve got a huge loss in bone density and a bunch of degenerative changes that go with that. Including two stress fractures around T8 and T11 vertebrae. And as a result of some combination of those things I now have kyphosis (the kind of forward curve sometimes known as “hunchback”) and possibly some other weird curvature. And then my neck is straight where it’s supposed to be curved.
All of this is pretty standard for severe osteoporosis, the only thing particularly odd about it is that I’ve got this going on at the age of 39. Which is because of the steroids I have to take and the fact that Howard made me do everything with my spine that you are not supposed to do with the spine of someone with osteoporosis. And continues to make those demands.
I don’t mind how any of this looks. But it can get excruciatingly painful. which is why having a cool word for it doesn’t quite make up for everything. Not quite. But I do love that someone somewhere decided this was the word for unusual spinal curvature.
So I can get shit and shit into the shit, so I can shit the shit into the shit.Me, just now, out loud. I was actually trying to talk myself through taking some meds.
I said at some point I’d write more about speech. That’s an example from a few minutes ago of using entirely cuss words and what I call “corner words”, to create a sentence that makes sense to me at least. This isn’t fluent speech (which I have sometimes these days), this is closer to what my baseline speech has been for a couple years.
What a cussword is is self-explanatory. Corner words are what I call words that “fill in the corners” of sentences. I know a lot of phrases that use corner words, that I utter as whole phrases. (Like “so I can” isn’t three words to me, it’s one word.) This can allow for a surprising approximation of fluency under the right circumstances.
If you’re wondering, this sentence actually translates to “So I can put hydrocortisone and propranolol into the cup of meds, so I can put these meds into the feeding tube.” It only makes sense in context, obviously.
Cusswords are not just tics for me. I have cussing tics. I also have spontaneous cussing (like the kind just about everyone has). And I seem to have the use of cusswords as all-purpose placeholders. (I don’t have any of these things all the time, but when I do, that’s how it plays out.) There’s a reason for my blog title. Well, lots of reasons, but this is one. I cuss a lot. It’s my most reliable spoken words. Sometimes my only ones. That goes over really well.
I’m finding that there are many posts that I want to write and can’t. Because they all require explanations. Well, they don’t require explanations. But without explanations, they can create a lot of confusion. And then people don’t know what I mean by things.
But then the explanations are hard to write, too. So a post that would be easy to write without an explanation, just doesn’t get written. Because the explanation would be much harder to write than the post itself. But without the explanation, the post itself isn’t going to make sense to people.
And yeah this mostly goes back to language use. And having to explain practically every word I use to make sure people know exactly what I mean by it. And maybe if people would acknowledge that English is a living language, it would help. And maybe if people would acknowledge that words have multiple meanings, it would help. And maybe if people wouldn’t try to force words with twenty meanings to have only one meaning, it would help. And maybe if people would realize that the same word can have a different meaning for each person who uses it, that would help. And maybe if people would recognize the existence of language disabilities (which are not always readily apparent to the average person), that would help.
But for a lot of people — they don’t. So you have to explain everything, or risk being so grossly misunderstood that it’s almost better to have written nothing. Because if you don’t write all the explanation, they can literally take you as meaning the opposite of what you actually said.
It took me forever to write that post dealing with how I use different words regarding genderlessness, and that was one of the easiest of such explanation posts I had planned. There’s another one I have to write now, that’s twenty times as hard even though it’s mostly only about one word. This kind of thing makes me want to give up on language and hide under a rock. At least there might be interesting fungus under there.
Words Specific To Genderlessness
This post is part of the Weave of Tradition series. Please read the introductory post to that series to understand more about this post’s intent and context. This series deals with traditions, language, and symbols that mean very different things to different people.
This happened some time ago. I’ve only now been able to respond at all.
Someone requested of me that I stop using the word homophobia and transphobia and instead use the words heterosexism and cissexism.
The person was polite in their request.
They explained, clearly and in detail, why they were making such a request. I assume they figured I didn’t know. (I knew. In more detail than they explained, in fact.)
I didn’t answer.
I couldn’t answer.
I couldn’t explain.
But I can say this:
And I realize it’s important for me to say no.
Because you’re penalized for your inability to explain.
So too often if I can’t explain, I just don’t say anything.
I can’t justify myself. Oh — I know my justification. But I don’t know the words, I don’t know how to say it. Especially not in a way that’d make sense to anyone.
But no, I both won’t and can’t — both won’t and can’t — use those words instead.
And I shouldn’t have to.
And I shouldn’t have to have an explanation or justification. It’s dangerous to leave people without a means to describe our own oppression, no matter if that’s your intent or not. (And I know it was not this person’s intent. But that would be the result.)
So all I can say:
So years ago I took a sexuality and relationships class from my developmental disability agency. The class wasn’t actually half bad and I learned a lot. One of the two instructors, though…
So there’s a bunch of us in the lobby of the building waiting around for class to start.
And they decide to do some kind of introduction to the class down there in the lobby before we go up to the room the class is in.
And there’s two instructors, a woman and a man. I know the man, he’s okay. But the lady is one of those people who’s secretly terrified of people with developmental disabilities and masks it with twenty layers of condescension. And they always think we don’t notice. We always notice.
So she’s talking down to us, and asking us what we expect to learn in the class, and so forth.
And a guy with an intellectual disability very deliberately asks, “Are we gonna learn about cunnilingus?”
She flinches, tries to recover, goes five times as sing-song, and says, “Woowwwwwww, that’s a biiiiiiiiig woorrrrrrrrrrrrrd.”
We were… unimpressed with her, to put it mildly. And she had no idea what an ass she was making of herself.
Anyway, I wish I could think quicker on my feet, or I’d have quoted Terry Pratchett:
“Hello, little girl,” he said, which was only his first big mistake. “I’m sure you want to know all about hedgehogs, eh?”
“I did this one last year,” said Tiffany.
The man looked closer, and his grin faded. “Oh, yes,” he said. “I remember. You asked all those… little questions.”
“I would like a question answered today,” said Tiffany.
“Provided it’s not one about how you get baby hedgehogs,” said the man.
“No,” said Tiffany patiently. “It’s about zoology.”
“Zoology, eh? That’s a big word, isn’t it.”
“No, actually it isn’t,” said Tiffany. “Patronizing is a big word. Zoology is really quite small.”
-Terry Pratchett, The Wee Free Men (exchange between a girl named Tiffany and a wandering teacher trading knowledge for food)
As it is, I think we all settled for rolling our eyes and the like, which our instructor of course missed entirely. Just like she missed the point of the guy choosing a word like cunnilingus when being talked down to…
“Elves are wonderful. They provoke wonder.
Elves are marvellous. They cause marvels.
Elves are fant
astic. They create fantasies.Elves are glamorous. They project glamour.
Elves are enchanting. They weave enchantment.
Elves are terrific. They beget terror.
The thing about words is that meanings can twist just like a snake, and if you want to find snakes look for them behind words that have changed their meaning.
No one ever said elves are nice.
Elves are bad.”
― Terry Pratchett,
(Apologies to actual snakes. Snakes are cool.)
The DD service system loves to pretend that it is a utopia ushering us all into an age of inclusion and empowerment and lots of other nice words. The problem is that for a lot of us, far from a utopia, it is a dystopian nightmare.
One way they protect the illusion that it’s all wonderful is by changing the meanings of words. They have a talent for taking a word and turning it into its opposite.
They have a term, for example, dignity of risk. What that term is supposed to mean, is that too often people with developmental disabilities are ‘protected’ from taking risks that other people are allowed to take. We may be forcibly prevented from drinking alcohol, or having sex, in ways that other adults are not. Dignity of risk is supposed to mean that we have the right to do things that agencies might consider risky or dangerous.
But here’s how the system actually can use it:
Let’s say there’s something that you really need them to do. The agency failing to do that thing will result in you being in danger. You know this. The agency has a duty to do this thing. You want the agency to do this thing.
The agency does not want to do the thing.
So they set up an impossible set of hoops you have to jump through in order to do the thing. When you can’t jump through the hoops, they tell you it is your own choice that the thing is not getting done. If you really wanted it to get done, you would jump through the hoops. The danger you now face as a result of their neglect will now be referred to as your choice and defended with the idea of dignity of risk.
So like the fact that until recently I hadn’t been bathed in a year or two? Dignity of risk. Except this is not a risk I chose. It is a risk they chose for me.
See what I mean? They can take a word, twist it inside-out, and turn it on its head. Until they can justify taking away all your freedoms with language designed to protect your freedoms.
The DD service system is excellent at playing this particular word game. It can be especially confusing if they use the right meaning of the word sometimes, but the wrong one most of the time.
Always, always look for the snakes behind the words. Because they’re there. And in the DD system, they’re everywhere. Every word or term that has an actual meaning that is supposed to protect our freedoms and rights as people with developmental disabilities, has an evil twin that looks exactly the same but exists to take away our freedoms and rights.
Look for the snake words. Just look for the snake words. If you understand how they work, they will give you a window into the dystopia a lot of us are living in.