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.
When I first tentatively described myself as nongendeered, I did not dream there would be so many words for this in the future that I wouldn’t quite know what to do with them all. So these word preferences are entirely personal, and should not be taken as telling anyone else to feel about different words or what to call yourselves.
This is mostly one of those posts that’s a little boring to me: It’s more posted for reference purposes for later posts, than for any other reason.
So here are some of the words for genderlessness and related concepts, and how I feel about them.
Words Specific To Genderlessness
This is the word I came up with for myself, when I first came up with a word. At the time, I viewed cisgenderedas meaning that you had a gender identity that matched your biological sex, and transgenderedas meaning that you had a gender identity that did not match your biological sex. So I came up with nongenderedby contrast: It meant that you simply didn’t havea gender identity. And therefore it couldn’t possibly match or not match your biological sex, because it just flat-out wasn’t there.
You can say all you want about my understanding of gender at the time, but that’s where it stood, and that’s my first clumsy beginnings at articulating what I was really experiencing. So it holds some kind of place in my heart regardless of everything I don’t like about it.
But I don’t like it at this point. Among other things, it’s clunky. It just isn’t easy to say or to read. It doesn’t work for me when I have better options.
But I do like that it’s never really caught on. When words for genderlessness catch on, they have a habit of acquiring gendered qualities. I don’t know why. Maybe because they acquire second meanings that basically refer to various nonbinary or androgynous genders (sometimes specific ones, sometimes just in general). This one, at least, never has never done that.
I really don’t like this one.
It seems to be a complicated subculture, at once a gender of its own and no gender at all, sometimes nonbinary and gendered, sometimes genderless, sometimes both, sometimes neither. And that’s fine for anyone who feels comfortable under that umbrella, but to me it just sounds like a social and linguistic nightmare.
Also, it’s hard to say. I don’t know if it was originally French and later used by English speakers, or whether it was always just borrowed from French into English. But it’s a very specific kind of French word that is hard for even someone familiar with French to figure out how to say in an English-speaking context.
So basically, I know exactly how to say neutrois in French. That’s not hard, there’s only really one way it can be pronounced.
But when a word using those particular French sounds is borrowed into English, it isn’t always pronounced the same way it would be in French. The French R sound doesn’t exist in English. So usually a word like this would be approximated by a W sound instead. So in English, it would sound like: noo-TWAH. Which sounds, to an English speaker, very close to how it’d be pronounced in French.
Except that it isn’t actually the same, so it’s confusing.
I don’t like the word itself any more than I like the word nongendered. I find it clunky and off-putting. I see that it’s supposed to mirror asexual, and it does a good job in that regard. I just don’t, personally, like it.
I’ve also gotten to watch the term evolve over time. And there was a time when it meant roughly what I mean by genderless, and it still does mean that for a lot of people.
But it’s acquired a second meaning that feels like it is a gender in and of itself, even with some unspoken rules about what falls into it. And there’s a specific kind of androgyny often associated with it. And that kind of androgyny never fits any kind of aesthetic I could pull off even if I wanted to.
And the second meaning makes it harder for me to use it. I don’t mind that terms evolve, I just don’t feel comfortable within what this term has evolved into.
Unfortunately for my personal preferences, agender has become the most popular term for genderlessness. If people know a term for genderless at all, it’s agender. Sometimes neutrois.
Obviously this is what I actually call myself. I like that it’s a word that can be readily understood and doesn’t look or feel clunky to say. I like that it just means lack of gender, and has no spoken or unspoken secondary meaning of androgynous, or a specific nonbinary gender with genderless qualities, or something like that.
This is a word that in some cases can technically apply to genderlessness, if by nonbinary you mean any gender or lack of genderother than male or female.
But I don’t actually like using it on myself. Because nonbinary is a term developed by people with genders, for people with genders, so it doesn’t feel like it fits. And I am not always comfortable being described this way, although people can use whatever definitions of words they feel ike.
This is much worse than nonbinary. Because it really is a gendered term created by and for people with nonbinary genders. It’s just not my territory gender-wise. And more so than nonbinary, it implies gender, at least to me. Since I lack a gender, it’s just not a comfortable fit.
I definitely feel I have a place in the trans community. Because I believe as long as you’re subject to transphobia, it doesn’t matter what specific category of gender you fall into, you may need the community for survival. And the community has no right to reject anyone who might need it. If parents who throw their trans children into the streets could ever be stopped by “But I’m nonbinary and not going to transition” then I’d take the hair splitting seriously. But as it is, given that membership in the community can mean survival to some people, I find splitting hairs about who belongs there to be a form of extreme and selfish cruelty.
That said, I’m not always comfortable under the transgender umbrella. It comes down to this: All the culture, concepts, words, ideas, etc. in the trans community were created by and for trans people who had genders. So these things all can work wonderfully if you’re in that category, which is most trans people. But I lack any gender identity at all and that means that even when things almost fit they don’t quite. Like a shirt that fits fine in some places but you can’t wear it because the armholes are so tiny you can’t squeeze the thickest part of your arm through no matter how hard you try. Except that the “fits fine in some places” part is added to by there being places where it looks like it fits fine the same as on everyone else, but it actually doesn’t fit well at all and may even restrict breathing somewhat, but without anyone being able to see any difference.
So I think genderless people belong having access to the trans community, especially if we want to and are comfortable there. But I can see why a lot of genderless people would be uncomfortable or not feel like it was the best fit. It wasn’t made with us in mind, and in some ways was made with experiences in mind that we’re never going to have. But anyone else saying we don’t belong there has no real standing to do so. That’s our own call and our own call only, and it can change based on context very easily.
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 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, Lords and Ladies
(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.
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.