Wednesday, July 15, 2015

No, I don't want biological kids. No, that doesn't make me a monster. Or a self loathing disabled person.

As I get older and yet don't age much, people have gotten more insistent about how I just must have kids. No, I really mustn't. If I do decide to raise kids, I will foster. I will be the sort of foster parent who teaches the youth in my care life skills like budgeting and how to fill out a job application and an apartment application and assembling cheap furniture. But I have exactly no desire (in fact, the opposite of desire) to have biological kids.

"But it's different when they're your own!" people shout at me. No, it isn't, because my issue isn't with kids in general. I like kids. I choose to work with children and youth. I mentor & I teach a scary sport. And if I do foster? Those kids are mine. Well, they're their own first & foremost, but a child I find through the system (which I know has a lot of problems. I know. Unethical and leaving kids out to dry when they're 18 & lots of yuck. That isn't where I intended to go with this)--that child would be every bit as much my baby as one I actually incubated. Given that I really can't do the whole pregnancy thing, more, because I wouldn't completely wreck my body in a completely predictable way. I get all protective and full of wonder with my athletes, & I see them like 10 hours a week. I am completely capable of developing the suite of feelings and attachment to a kid I didn't birth, if that is the road I choose to take. Really I am.

But right now it isn't.

"So you like kids! You've considered the steps to take to have a family via an alternate means! So you should have your own!." Woah woah woah hold the phone why are you so obsessed what I do with my uterus? Focus on your own damn uterus. I like kids. And I already have a family, they're called chosen family. Raising mini-mes is not necessary to have a family. And, since you asked, I really shouldn't have babies so it's a damn good thing I don't want to.

Oh you want to argue with me about how I could have a miracle? Nope. Time for some genetics: I have Classical Type Ehlers-Danlos Syndrome. It is a heritable connective tissue disorder, basically my collagen doesn't so much hold things in place as generally suggest they hang out in this general region. Currently I am doing extremely well for someone with classical EDS: I have minor pain, I do have recurrent subluxations but I can reduce every one by myself. The only eye problem I have is I'm moderately nearsighted, though my sclera are blue, but that's mostly just cool. I have a mild Chiari malformation where currently all the troublesome symptoms are treated without taking some bone off the back of my head. I have other cooties too but this is the one that's most immediate in the pregnancy you're so convinced I need to be fulfilled.


EDS is autosomal dominant. That means there is a 50% chance that the fetus would inherit the gene from me. Pregnancy in an EDS uterus haver is extremely risky, lots of chance of miscarriage, loads of worsening the laxity (because relaxin, the hormone that lets the everything open up, doesn't take a break just because the uterus haver is already made of rubber. It means new & exciting dislocations). An EDS haver with an EDS fetus? It's even worse. The placenta coming off early, lots of interesting prolapsing. Like, theoretically, every organ in the godsdamn pelvic cavity can prolapse all the way into & through the vagina. Isn't that just pleasant? "Sorry, we're going to whisk your extremely early baby off to NICU and try to put its shoulders and hips back in place...annnnd currently your uterus is on the outside with a large part of your intestines along for the ride. Major surgery. Now."


And I haven't been able to even find much on what happens when 2 people with autosomal dominant connective tissue disorders have kids (because I do my research, because shooting people down is just easier than "I don't want kids I just don't I appreciate yours but I do not want my own" and resorting to "wow you want me to die in this revolting way" is actually the easier way to get them to back off). But my guess is that it's like the disgusting paragraph except more gross. I don't want that for me & I don't want that for any kid if it is foreseeable.

"You don't want your kid to have your thing. OMG closet ableist". Um. Hold the phone again and also this fruit basket. I do not want to have kids at all, I have a connective tissue disease that makes it really dangerous (even more so than adrenal insufficiency and epilepsy, which also do not stack well with pregnancy), and do not want kids because I don't want kids, is not the same as "I do not want a kid like me bc disability". If someone came to my door with an autistic epileptic kid and the income to support them, okay. I could do that. It isn't a disability thing, it's an assured mutual destruction thing. And a "no really I do not want to go through all that" thing. I have no issue with more kids with my disabilities existing. I have a problem with me making them.

Sorry to shit on your superior "childless uterus havers are bitter and evil and hate kids" bubble. I like kids. I do not want them. And before you get too high on that horse, remember that I'm not rare. There are lots of people who don't want kids but don't mind yours (until you get all sanctimommy. Sanctimommies who think that women without children are evil make their kids a lot harder to tolerate because it also requires tolerating their parents.) A lot of people can't have kids for medical reasons, or for financial reasons, or for undiscovered reasons, but the prying of folks who think everyone needs babies is painful. You're hurting them more than you're hurting me, because I just tell you about that gross paragraph, or tell you that you're harming your child's ability to relationship with a big swath of adults. But it doesn't cut me to the bone like it does someone with fertility difficulties.

I still don't want kids. Nothing you say can make me want kids. I like other people's kids. Yes, it's different when they're my own because either I was matched via an agency or they did terribly life altering things to my body that are not really on my list because they can be fatal. That isn't a good kind of different.

I'm 32 godsdamned years old & you can stop trying to change my mind at any time now, really.

Sunday, July 12, 2015

My disability is ALL ABOUT YOU.

You figured it out.

I am epileptic, and have seizure triggers out in the wild, just to inconvenience you. It is something I decided to make happen with my sheer desire to piss you off. That's how it works. You are the center of the world, so much so that I altered my brain in a life threatening way in order to fuck up your day.

That's how it goes.

I choose to be unable to go to dance things, though I am a good dancer, because too many flash cameras & poorly balanced bass can kill me. Yes, dance people, you are oppressed by my seizure disorder, which developed solely to make your life harder. The ADA is also fascist oppression all on poor widdle you. Because disabled people exist to upset your life.

Cyclists: my photosensitivity is actually a conspiracy by Big Automobile to get you squished like a pancake. You're exactly right. That's why the rape & death threats are acceptable, I'm working with big business. So yeah you're totally in the right continuing to knowingly hurt me, because my brain was specifically engineered to make your life harder (gosh, empathy is tough isn't it?)

Autism conferences? All of you (there's one that hasn't had someone who was there to make money attack me with something potentially deadly. ONE)? Yes, I developed epilepsy, just like 30%+ of the autistic population, because I am a meaniepants who wants to make your life hard. I know my ADA rights to be difficult. To be confrontational and noncompliant. I am being a literal shit & thinking they actually apply to me because I want to make your life miserable--not because I have a right to live my damn life and to go to things that are about me. Nope. That funky EEG exists *just to inconvenience you*.

That's the whole reason. You folks are super important. And seizure activity makes me panicky because I'm just an asshole who wants to yell at you while you or people you hired are actively causing me harm. I totally haven't learned too much about SUDEP or status epilepticus (which I am consistently having to teach you people about. Like you ever listen. Ever. No, learning is the oppressor! How dare I try to instruct you!)

Quacks & altmed people who are into sound and light woo? Yes. I am so hell bent on debunking you that I have seizures over it. I know, I know, die off herxing negativity whatever. It's just to keep you from making money with your bullshit. Except the part where this is the place that so many so called skeptics will err on the side of shitting on disabled people ("stay in your house!" because once again empathy & the ADA are fascism) rather than debunking the low hanging fruit you're selling. But still, it's all about you too.

Yeah, usually-debunkers, I notice. I notice. It's all about you, too, though. Gosh, you have to pick between your favorite people to shit on! I make your life so hard. Harder because I know my rights & I call you shitty bigots when you're being shitty bigots.

And then when I defend my rights, I'm the bad guy. Because you are so important. Thinking about other people is hard. Epilepsy makes you uncomfortable. You have no problem getting on your high horse when someone whose consciousness is altered is attacked (because of the presence of an attacker thank you, no one ever 'asked for it'). Moralizing and shit. But you moralize at me when, yes when, something happens to me because I was seizing because of shit people you relate to were doing? And you feel very uncomfortable. So the obvious answer isn't for you to grow some damn empathy. It's to decide epilepsy exists just to inconvenience you.

So, fine, you're right. I am going to die an unpleasant death, triggered by some self righteous asshat (note that all these categories are full of self righteous asshats? They really are), because my brain engineered itself all for them. It's totally all about you. You're right.

For my brain to be about me I'd have to be a Real Person. How could I ever forget that I'm not, & therefore do not have the rights of one?