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?

Friday, May 1, 2015

BADD 2015: #blacklivesmatter, #freeolinka, & intersectionality reminders

For today I was going to write about the latest developments in taking on college & university "Disability Services" offices.

But this is more important.

This post is written during what is being tweeted as the Baltimore Uprising. A couple weeks ago a man named Freddie Gray was killed brutally while in police custody. Baltimore is literally on fire, people are--if we're being honest, and I always am--risking their lives protesting police brutality, and activists in cities across the nation are protesting in solidarity with Baltimore.

Because I am a tell one story at a time kind of person, the bulk of this post is going to be about an activist in Texas, Olinka Green, who is a disabled Woman of Color & a friend of a friend. Olinka was at a silent march in Dallas, wearing a sandwich board with names of people killed by police. She was told to leave by some of their 'law enforcement' officers, and she did. Then she attempted to get the badge number of the officers making her leave, something that is well within her rights to do (as is standing in a public place with a sign, but we know that). An officer ran her down with a Segway and maced her while yelling to "stop hitting me" (the officer). Olinka was holding onto a fence at this time, trying to not fall down, and not hitting anyone. She was taken to the hospital and is now being held at $30,000 bail (yes, 4 zeros. More than many people live on in a year) on charges of "felony assault".

Oh, did I mention that Olinka is disabled? I did! She has nerve damage that was certainly not improved by being run over with a Segway. She requires medication in order to not be in "cannot walk" pain. They are denying her said medication because of course they are.

There is crowd funding for Olinka's bail and legal fund here:

So here we have police brutality, racism, ableism, and likely a bit of misogyny as well all coming together. Denying people medication as punishment for going to a protest is not a new tactic. Just a month ago a man had multiple seizures while in police custody--after telling them he has epilepsy. He even had his meds with him (and was not charged with any crimes). Multiple people in our communities do not feel safe doing political activism because of this well known tactic.

First amendment rights apply to everyone, not just the healthy, wealthy, and white. The solution here is not compliance, it is not "well stay in your house then". It's systemic change. Black people, disabled people, and especially Black disabled people are at tremendous risk from folks who are supposed to "protect and serve" until that happens.

So. Seriously. If you can donate or share, that'd be rad. They're called rights for a reason. 

Saturday, April 11, 2015

Childhood bully: a truth bomb

So this is the April that keeps on giving.

Regular readers will note that I don't write much about my childhood peers, except in vague terms or in passing when noting that I went to a school with tests to get in (because twice exceptional is twice screwed). Mostly though I'm extremely vague. I don't know why, I guess some of that "well, kids will be kids" internalized a bit, and part of me really wanted to swallow that blah blah awareness blah blah they'd feel terrible now blah blah excuses.

Welp. That ship done sailed.

Today a long time internet acquaintance was at the museum in my city with an art club. I met them there (they can identify themself if they so wish in the comments. But my issue isn't with them, it's with childhood bullies) for a very quick lunch before I went to do a work thing.

Turns out? The person in charge of my friend's thing was a childhood bully of mine who recognized me, because I haven't changed much since high school or maybe figuring out what "twelve years later" will look like is just normal. He asked my friend who I was. They told him. And I envision the conversation went approximately like this:

"who is your friend? Oh? NO WAY. We went to school together! No, no, she wouldn't remember me fondly at all. See, I was a big badass who joined with the other 24 kids in our class to make her life hell, because I am a big fucking coward. I'm still a big fucking coward, because I'm telling you, a student, instead of growing some kidneys instead of apologizing to someone I actually wronged.

"But, I mean, I wasn't the worst, so no one can hold that against me right? I only watched the rest of the class lock her in a locker. I was only silent when classmates cut her hair. I only whispered about the actually really fucking obvious signs that this kid was being abused at home, because they were funny. I only mocked her hand flapping when the teachers weren't watching. I'm a real stand up guy.

"I wanted to be a tough kid, so I proved it by shitting down on the biracial kid getting abused at both houses. Yeah I'm so punk. I am going to lie and tell you I stopped at age 10 when your friend, someone known as an actual badass in your movement, will tell you that actually it continued until she made friends with the scariest kid in our high school. No, we weren't in high school at 10, but I'm ashamed to have been such a shit so I am going to rewrite myself.

"Not ashamed enough, though, to actually apologize. Because like all bullies I'm a coward and because I'm a real person I expect you to sympathize with me, not the weirdo kid who was being raped at home and whose mom tried to bash in her skull and whose family configuration was weird as hell and who never had food at school and you would have too and that's my excuse.

"Oh, you say she's autistic? Well, no one told me that then and so everything I did doesn't count because it's not terrible if you are evil to someone because you think they're choosing to be weird. I'm not a sack of shit at all. Surely we're all over that now, kids will be kids."

So, here's the thing, shitty former classmate who should likely be very glad that I am face blind: you get exactly zero cookies.

You have enough self awareness to recognize that talking to me wouldn't have gone well. Great. You win a prize. The prize you earned of "not having all your art students know that you sexually, verbally, and emotionally harassed a classmate all through middle school" is what you get. Not a cookie. Avoiding the natural consequence of "this woman I traumatized all through school is using her singer lungs to announce all my sins". Good job. You also avoided a PTSD attack all over your general vicinity, but that doesn't mean I got to, because that's my prize for knowing your student: they told me who you were and that you halfass copped to being a miserable skid mark.

And I guess you did cop to being a fucking coward. You weren't the worst. Oh boy. Such moral fortitude. Except I remember you, now that you saw fit to drag me kicking & screaming into remembering you. You were just too much of a wimp to fully commit. You might get in trouble (ha. You may have legitimately passed the test to get into that school, and I know that mattered a lot to everyone back then, but you had zero pattern recognition. I had almost all the pattern recognition for the entire class of 1997--the person who got expelled in 8th grade didn't get expelled for any of the shit he did to me, including unwanted sexual touching and stealing. He got expelled for sexual harassment of people who mattered). You might get caught, as though anyone would care. You might cross the line & get kicked or hit back, and that might hurt (when we were 10 I was a whopping 52 pounds. I was always strong for size but at the time you're claiming you stopped, I wasn't big enough to hurt any of y'all. When you actually stopped you would have had more to worry about, except you fuckers were less with the touchy after 6th grade--during which I barely hit 70 pounds. So). Maybe you had a bit of a conscience, but child you was a fucking coward about that, too. I was standing up for other people shortly after I learned to speak at 5. I have no sympathy for child you.

I think part of you knows, dude, that child you is very lucky child me existed. You should be thanking whatever gods you do or don't believe in every night that child me was in your class, because you were a fucking weird kid yourself. Yeah, you could draw, but you weren't the only one. You weren't exactly, as I recall, in the financial bracket of the rest of the kids in our class either. You weren't all that athletic, or particularly funny, or quick to connect novel concepts, if we're being honest. And I am being so very honest.  Based on where you lived (don't traumatize the autistic kid. She memorized everything as a way of staying safe from you, just FYI) you were not exactly close enough, geographically, to have longstanding buddy buddy clique situations with the other kids in our class. Oh, we're back to how you've always been a cowards, aren't we? You got to hang with them because you were mean to me. Nice, getting points with a bunch of other shitstains by, again, touching and stealing and making fun of the biracial poor kid getting abused at home.

Cute.  Such tough. Many badass.

I hope you hate yourself. I really truly do. I know we went to Catholic school, but I don't believe for a second that forgiveness is for the forgiver. That it's a worthwhile thing to do when people aren't sorry. It's a nice idea for people whose lives are generally rosy, or perhaps for people who are cowards much like you who did bad things and don't want to own up to them because that's scary and hard. I think forgiveness is a gift. Sort of. No. Actually it's more like a qualification for certain jobs. You have to ask for it. You have to prove you mean it. You have to accept that you might not attain your goal. And not throw a big pissy fit when you aren't immediately forgiven. You have to then commit to not being such a waste of carbon and actually keep that commitment. I don't fuck around where forgiveness is concerned, and frankly I wish I believed in a hell so you & all our classmates could rot there. You can go be a coward with all the internet tough moms who send me death threats, you'll get on just famously.

I really don't understand, though, why you felt the need to mention this to your student at all? Did you think they could forgive you for me? It doesn't work that way? That they could assuage your guilt in some way using one of the common tropes? Your student is a lot younger than us & didn't grow up quite so much with "kids will be kids" and "well then don't be weird then". And they spend time in a community that I helped build that has a lot of anti bullying. Your student was not going to be impressed. Did you really think "so this cultural leader of yours, I contributed to her PTSD. But I wasn't the worst!" was really going to be a good way to build a good teacher/student relationship? I've taught a long time and "oh yeah I helped lock that person over there in a locker" is the opposite of things I would ever say to my students--not only because I've got a lot more moral fortitude than you do & would never do that, but because basic relationship building with students includes not giving them the impression you think people like them deserve to be tormented.

So. A+ teachering on that. Except not. Truly the people who set out to make a school for exceptional learners who synthesized and learn from experience are so proud of that error in judgement. I think you're too much a coward to be trying to scare them. How very adequate of you. You're certainly too much a fucking coward to own up to what a shitbasket you were as a kid, leading me to believe you sure are.

Congrats, though, for being the first person from that damnable school I've addressed on here. You can wear that with a badge of fucking honor. And then you can call up all your little buddies from that school and beg for cookies for the hours of PTSD flashbacks and days of nightmares you are bringing about. That would make you a fucking hero! Hot damn. You must be so proud.

Maybe you should stick around and read, if you're actually reading. And then not comment unless it's with a truly artful apology for being a waste of amino acids & a skid mark on the stain of humanity.

Pic vaguely related: Purkinje, the flame point Siamese seizure alert cat, has this face to make at such nonsense.

Saturday, February 28, 2015

So Autism Daily Newscast told a falsehood. And doubled down.

In the screenshot, a lie is highlighted. The lie that neurodiversity proponents don't consider autism a disability.

We do. We just don't think that means we need fixed:

Highlighted is their lie, which says " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"

That is not the position of ASAN or any neurodiversity activists I know.

So I tweeted them. Twice. And am not the only person who tweeted them. They claimed to not know what I was talking about & requested an email.

So I sent this email:

Ok so this is upsetting.

You lied when you said that neurodiversity activists say we aren't disabled. That is a position that has been SOUNDLY rejected, refuted, and is just flat out nope.

People who *do* say we believe that, exist. However, they are lying. And they are not neurodiversity activists.

It is unprofessional to talk about people without talking to them. Talking to autism parents, particularly the sort who are committing behaviors we protest, is not the same as talking to autistic people (did you not learn that? is talking to me the same as talking to my father? Cuz it's not. Similar experience, in our case, but not the same). Is talking to parents who adopted internationally the same as talking to a transracial adoptee? (no. it is not.) So why do you do it when you talk about us?

That is at best unprofessional and at most likely, disingenuous. This is seriously 3rd grade stuff.

Some simple rules:
1. Talking to parents isn't the same as talking to autistic people, unless they're autistic parents.
2. Trying to get information about what neurodiversity proponents mean by talking to people who reject the neurodiversity paradigm is...there isn't a word for how wrong it is. It's like asking the KKK about racial justice, ok??
3. When you choose to do these things anyway, you intentionally spread lies.
4. There's no excuse, as twitter is overflowing with neurodiversity people.

When will you publish & promote your correction of this willfully ignorant statement that spreads lies & makes it even harder for people like me to get services? Since apparently thinking you're ok, disability & all, means you don;t need help, bc of lies like yours and those of your sources?

Seriously. You owe us a correction & a big honking huge apology. Prove my low expectations for you wrong by actually delivering.

And I got this back, an email that wasn't supposed to go to me but instead to the emailer's higher up:

Shan -please deal with this - I am not even reading it tonight. I do not believe we said any such thing but maybe I missed it.  Perhaps she could quote the place we said it?


So, we have denial the first. Followed by her feels parade:


I am so upset that I replied to you rather than Shan Ellis my editor. I am deeply offended by your comments.

Roberta Hill
Autism Daily Newscast

Here's the thing:

When you lie, you don't get to be offended about being called out. When you misrepresent a community, you don't get to be offended about being called out. You get to try to fix it. That is your one decent option.

This is what I said back:

You don't really have a right to be offended here, given that *you* lied about *my* community.

you said " Basically, the position of groups like the Autism Self-Advocacy Network (ASAN) states that autism is not a disability, but rather, a different way of being, and that it is not something that needs to be “cured.”"

And that is a LIE.

If you don't like being called out on lying, don't do it.You have no right, though, to pull the "so offended" card. You're the one who said to email you what I meant. I did. You're the one who ok'd a lie. This isn't about your feelings, this is about you misrepresenting the facts.
 I quoted for them, as requested. Then I get their other person being all condescending and a jerk and derailing in my inbox, because why not ignore the point? We can't actually address the point, that'd be silly:

Dear Kassiane

Thank you so much for your email. Unfortunately at this time we have no error to correct. 

I am on the Spectrum myself, and work as a journalist and editor. Our role on Autism Daily Newscast is to report the news without bias, and collect information to present as part of articles for the general reading public.

To say that we are lying is indeed a defamatory statement, to repeat this defamation on twitter, or any other social networking site, is in fact under Section 10 of the defamation act a civil actionable offence. I would rather not have to go the extreme of a court case. I hope you feel the same, but we will defend the honour of our articles and writers to the last.

We do take a broader view and interview people often and in the case of this article we talked to a collection of neurodiversity activists. 

We are not here to judge what other people believe, we simply report news. 

I would like to take a moment and remind you that some autistic people require advocates. The responsibility of advocacy for a child who is non verbal and (I despise this term) low functioning, falls to the next of kin or guardian who is usually the parent. I agree with you to some extent that if the individual can communicate there is no better way of understanding than to talk to the individual, not a third party. Unfortunately for some there is no other means to communicate.

I find your comparison with the KKK wholly unacceptable and in incredibly bad taste. We have presented for and against arguments from both sides of the fence and do not feel the need to justify why we have taken this stance as we are completely neutral.

"We intentionally spread lies". No my dear, we report news. Again we are completely neutral and present both sides of the story to an audience who enjoy reading us.

I completely understand your passion, if you would like to present an intelligently thought through article of your own representing your opinion I'd be happy to review it. I also understand your passion regarding the topic. But there are no mistakes, or errors or palpable "lies" in this article. 

I sincerely wish you all the luck in the world,

Shan Ellis

Thing is: it isn't defamation when you say someone is lying when they're actually lying.

It is a lie to say that ASAN's position is that autism isn't a disability.

ASAN is anti cure. That does not mean "autism is not a disability". Those are not synonymous.

And don't even with the condescension. Just don't. All that indicates to me is "don't even bother, just put it on the blog".

Because I actually have more faith in people than they deserve (or that I'll admit to) I sent one more email before starting this blog post. Maybe they just aren't understanding the words that I am saying!

No, you lied.

When you said neurodiversity proponenets say autism is not a disability, you are LYING.

That is inaccurate. Had you fixed it, it would have been an error. As you are doubling down, it's a lie. People fix errors. People double down on lies & try to justify them (do not lecture me on people with differing support needs. That is not relevant. That has nothing whatsoever to do with you spreading falsehoods about what neurodiveristy proponents believe. Many neurodiversity proponents *are* nonspeaking for pete's sake).

I see my low expectations are well founded.

And they sent me back more condescension, because why not?


I see there is very little point in continuing this conversation as you fail to see we are a neutral organisation operating to bring news to the autism community (which I am wholly ensconced in being diagnosed with Aspergers).

We truly wish you the best, but at this time this article stands true to the way the reporter has composed it.

Glad to be of service at this time

This person seems to think the "autism community" and the "autistic community" are the same thing, rather than vaguely overlapping sets.

She also seems to think that ASAN is "autism self advocacy network". ASAN uses the identity first Autistic pretty much always.

And I agree, having this conversation is a waste of time. It has nothing to do with neutrality, it has to do with actual misrepresentations that turned into deliberate lies with the refusal to correct them.

So. Here's that pile of correspondence.

Monday, February 16, 2015

In defense of participation trophies

Currently it is popular in the media to come up with all sorts of reasons my generation (I'm a Millennial) are awful and bad and worthless and all sorts of other unflattering things. It has nothing to do with the economy, nothing to do with the systemic devaluation of labor, no sir.

Apparently it's because youth sports leagues shifted to giving everyone a trophy or medal. That is what is wrong with my generation. Fifty sent lumps of plastic, not an economic depression and job market saturation, are responsible for all that plagues my ilk.

I have written about my participation in athletics here before: specifically youth basketball, dance as an adult (which has a lot in common with gymnastics as far as how I experienced navigating it while autistic), about benefits of sport in general. It's no secret, I like being active. I feel that everyone should have a chance to be active, and I feel that participation awards are part of that.

Something that was happening during my youth: programs were becoming more integrated. More people with disabilities were participating in mainstream sports, particularly kids like me who were 'too typical' in whatever way for Special Olympics but not actually, you know, good. This is a good thing, and it didn't just benefit disabled kids. It also benefitted the able kids who are just not good athletes. Opening the option to everyone is a good thing.

I'm going to tell you a secret about kids who got the medals that said "participant" on them: we know we weren't the best that day. Some were not the best any day. A whole lot of us were there anyway because we loved what we were doing, and we wanted to get better. Hell, I knew a 6 year old--this was over a decade ago, she's an adult now--who refused to take her first place trophy because she didn't even meet the requirements of her level, but all her competition fell attempting to do so. To us, the medal was an acknowledgement that we put in effort.

You know who got really intense about the trophies? Parents. My mother, at least, had it in her head that if a child is not succeeding at a sport, that child should not do that sport. It doesn't matter if they are enjoying themselves. What matters is that they are bringing home awards; if you can't possibly be the best, she said, why participate at all? It's like "because it's fun" never occurred to her, or many of the adults hanging around.

Participation awards convinced my mother that we were 'good enough' to continue in the sports of our choosing. We were succeeding! Look at the trophy! My first year competing tumbling, I was mediocre. Had I not come home from the first meet with a trophy, my mother would have yanked me out. Five months later I got 8th at State & qualified to Nationals. Six weeks after that I got 6th at Nationals. Many years after that I got 3rd at Nationals. But without the participation trophies, which to my parents meant success, I wouldn't have had the chance to get the real benefits from my chosen sport.

Things like strength. Things like perseverance. Things like learning to lose and win gracefully. Things like goal setting. Things like learning to cope with a bad day. Building frustration tolerance skills. In my case, building enough physical dexterity to move relatively gracefully through space. Friendships. Knowing how to compete with someone without them being The Enemy. Focus. Comfort in front of an audience. Poise. Working through fear.

It wasn't about the trophies, and I suspect it wasn't for most of my generation in the various activities we pursued. I had a lot of trophies. Some were even pretty impressive. The only one I was sad to have to leave when I moved?

It was the one that my coaches nominated me for & coaches & judges voted on. It wasn't for being a great athlete (I was pretty good. I wasn't Athlete of the Year material). It was for...sportsmanship, setting a good example for younger competitors, perseverance, grace in both victory and defeat.

It was for the things that mattered.

But I never would have gotten to that place without participation trophies because of the old idea that sports are only for the most gifted of athletes. Most of the people I did sports with? We did it because we liked it. Not for the trophy or medal. And we knew which trophies and medals really stood for something.

Every once in a while someone still ableistly denounces participation trophies with "it's not the Special Olympics". That's bigoted as all get out. Athletes with developmental disabilities are frequently participating out of love for the sport, too (I do have criticisms of SO, namely that it's segregated & run by able people; the way they set up an environment where every participant can succeed is not a thing to be criticized). Special Olympians are athletes, just like anyone who regularly participates in a sport. Their developmental disabilities do not change that, and a gold medal won at a national SO competition matters just as much as one won at any national sporting event. So even if I can't convince you that participation awards are a good thing, at least stop saying this & come up with a real criticism.

My generation has inherited a big huge mess. It's not our participation trophies' fault. The world would be even more screwed if we didn't grow up with programs where everyone was rewarded for their success, rather than just winning. We had the chance to learn a lot of things that you can't display on a medal, without which we'd be even more messed up.

So stop the hate on for the participation trophies; participating was not and is not a bad thing.

Thursday, November 20, 2014

What "disability rights is a joke" actually means

Content note for uncomfortable truths about abuse, neglect, and murder. Also for sardonic tone.

Remember I wrote back in February about Skepchick's big ableist mess and double down and triple down?

Remember that bit where they decided that I'm not a real person but instead a 4chan troll identity who exists to make social justice look bad? Because "disability rights is a joke"?

Maybe you think you're an anti oppression activist & have thought that, or you have friends who express that, who think that ableism isn't really and that disability rights is ridiculous. Before you get on that train, sign on to that idea, think about what you're really saying:

You are saying that the right of disabled people to live in places that aren't institutions is a joke.
You are saying that our right to an education is a joke. Young disabled people who should never have had to become symbols have done so, just advocating for their right to go to their neighborhood schools.
You are saying our right to adequate medical care is a joke. People are denied organ transplants every day because of disability, and apparently that just tickles your funny bone.

You are saying that curb cuts and talking walk lights at intersections are absurd. You are saying that ASL interpreters and elevators and ramps and Braille and automatically opening doors and kneeling buses are worthy of ridicule. That you get your jollies thinking about the disabled people killed by police--how many neurodivergent and Deaf people, particularly PoC, were injured or killed by law enforcement? A lot, that's how many.

You are saying that the very idea that a disabled person abused or killed by a caregiver might, you know, deserve justice? Is preposterous. Never mind that we have a much higher rate of being murdered and abused than non disabled people do. Never mind that our killers are portrayed with sympathy. The part that baffles you is the part where we seek justice.

And the hilarity just doesn't end there!

You think my right to sexual autonomy is a joke. Judges have declared that people are too disabled to have been raped. Not that forcible sexual acts didn't take place, but that they don't count because the victim is disabled. Yuk it up, because there are jurisdictions where people with certain disabilities are considered unable to consent to sex. Isn't that just so funny, that we are considered unrapeable and yet when we choose to engage in sexual activity we need to be protected from our own inability? Bet you're just busting a gut. Will you pee yourself when I tell you that frequently, disabled people are placed on birth control or sterilized without consent? I can just see the tears of mirth running down your face as I tell you that this serves to protect people who serially sexually assault disabled people. Oh I didn't mention your favorite part of the joke, did I? The part where over 90% of disabled women are sexually assaulted, many over 10 times.

Still laughing?