Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Saturday, October 23, 2010

More on Autistics Speaking Day

So all things considered, my Autistics Speaking Day event on Facebook is going pretty well.  For those who didn't read my last post, this wasn't my idea, but I decided to try to publicize it by getting it on Facebook where people could spread it to all their friends.  It's been pretty damn successful.  Only 73 are attending so far, but at the moment of this writing I have 8 blogs participating and we have been written about in the Examiner.  My mother is so proud.  I'm hoping to go further with this and I'm hoping news will spread to more people.

If you know anyone who might be interested, let them know what's going on.  If you have Facebook, RSVP to the event and invite your friends.  If you would like to participate, message me on Facebook, e-mail me at, or comment here.  I need your name (whatever you want me to put on the page; real names not necessary if you don't want to give it out) and the URL to your blog or website.  When everyone posts on November 1st, I will message everyone attending the event with links to all the blog posts.

If you have something to say to the world about your life as an autistic person/person with autism, this is your chance.  Please join us and participate, and speak out on November 1st.  Shutting down Facebook for a day won't teach anyone a thing about autism, but blogging and letting at least a few more people know what we're thinking might have some sort of effect.  Thank you in advance for your participation and/or support.

Friday, October 22, 2010

Autistics Speaking Day

I'm posting this from the fiance's Mini Cooper.  He has one of those fancy Evo phones that lets him give a wi-fi bubble to nearby friends.  Ooh...just passed a Dairy Queen but we couldn't stop for ice cream.  :(  Anyway, we're on our way to pick up a friend of ours, who is also my maid of honor, from college.  Because at 2 PM tomorrow I have an appointment with David's Bridal to try on wedding dresses, and I wanted her to be there.

Anyway, I've noticed some blogs I follow talking about that "Communication Shutdown" event.  It's been pretty controversial, for reasons people here are probably already aware of, but just in case let's go back over it.

1. Autistic people are not silent, online or offline.

2. Non-autistic people will have no more clue what autistic people's lives are like simply by staying off of Facebook for a day, because while they are avoiding their computer, they are still not autistic.

3. The invention of the Internet has prevented autistic people from feeling so isolated. Autistic people use social networking sites, forums, and blogs to talk to other autistic people, and even nonverbal autistics or autistics who have difficulty effectively communicating have an opportunity to socialize online.

So inspired by Corina Becker, I searched in Facebook for a link to an event that I could invite all my friends to.  There wasn't a Facebook event yet.  But Corina's idea was such a good one and I felt so strongly about it that I spent some time typing out info and created an Autistics Speaking Day Facebook event myself. 

I have about 409 Facebook friends.  I invited all of them.  I'm not trying to steal Corina's idea (in fact, all credit goes to her because I've been a fan for about 6 months since I discovered her blog), but I wanted to get the word out about it because it's so brilliant.

So if you're reading this and want to participate, and you have a Facebook account, go here and RSVP (and then invite all your friends!).  If the organizations that pretend to raise awareness without defining it or making understanding of autism any clearer want to keep doing stupid publicity stunts like this, they can keep doing it, but autistic people aren't turning off the Internet and I hope we'll all be online doing exactly what Corina has suggested.  So when all the "awareness" raisers are done patting themselves on the back and come back to their computers, they'll see we spent the day speaking out.  I think we will  be far more productive, no matter how few people participate.

Thursday, October 21, 2010

So I have followers...

It's kind of weird to be actually interacting with people whose blogs I've been reading on my RSS feed for months.  But it feels good so I'm happy about it.  ^-^

A couple of people have asked me about the title of the blog (particularly on the reason I used the name Katy when most of my friends have only known me to go by Kat or Kathryn).  It's kind of a long story so you'll have to bear with me.

In 1993, when I was about 5, my family moved from a town called Belleville to a town called Smithton.  Belleville is okay.  It has about 45,000 people and is less than an hour from St. Louis.  Smithton is a tiny town about seven miles away from Belleville, and at the time I moved it had about 1500 people (although now it's around 3000 because there was a population boom two or three years after I moved in.  Smithton is the kind of place extremely conservative racists move to when they don't want their kids going to school with "gangs."  Although one or two families were more honest and just said the N-word.).

My family lived in a Victorian house that had three bedrooms.  My mother wanted us to move to a bigger house so that my father's parents could move in with us, and she also hoped that she could send my brother and I to a better school, because the kind of education she'd had at Belleville's public schools wasn't waht she wanted for us.  We happened to find the house in Smithton that had five bedrooms, and it was cheap because the large family living there had to sell it fast.  So we moved in and I started my second year of preschool at Smithton.

The last preschool hadn't been too much trouble for me, although the teacher tried to get me to play with other kids more and I wasn't usually too interested.  But my first day in Smithton's schools involved me getting pushed down by another little girl and told that I didn't belong there and I should go home.  I told her that I lived in Smithton now.  She insisted that she didn't believe me and somehow this turned into a chant, sung in an annoying, sing-song voice (or voices, usually in unison): "Katy doesn't lie in Smith-ton!  Katy doesn't live in Smith-ton!"

It's a stupid insult, to someone who is much older.  But to my five-year-old mind it started out annoying and became meltdown-level  frustrating when I could not use reason to convince them that I actually did live in Smithton now.  I couldn't even comprehend until much later that they didn't even believe that, but were doing it for the sheer joy of my overreaction.  It became a constant thing.  My attempts to bring it up to the teachers resulted in me being put in time-out for being a tattle-tale and a crybaby.  I was shoved off of playground equipment, and since I took things very literally and was gullible as a child, I was easily convinced that new kids were not allowed to play with whatever toy I wanted to play with.

Unfortunately this only grew worse when I got older.  In kindergarten, there were even more kids to pick on me.  I made a few friendships but these were easily shattered when my new friend discovered that I was a freak and associating with me would result in strong social repercussions.  This would result in new friends immediately turning around and harassing me like the other kids, and it was very confusing for me.

I could never fit in, no matter what I did.  I excelled in school, reading 8th-grade level chapter books by the time I was in first grade.  This made me an even easier object of derision, and my second-grade teacher decided I needed to be sent to a psychiatrist, who quickly put me on Ritalin and later Imipramine.  I'm sure I will get to that nightmare in another blog post.  But it was instilled in me by the teachers and doctor that the most important thing in the world, more important than being happy or being myself, was to fit in.  I didn't fit in; that meant I was the problem.

The system worked for the bullies, who were too numerous and powerful to be punished, and I was the unfortunate victim and scapegoat.  It was easier for the issues to be blamed on me than to admit that Smithton had a bullying problem that needed to stop.  I was hardly the only child at the school who was bullied horribly, but in my year I was unusual for the sheer amount of people who hated me and were disgusted by me, and even the other kids who got bullied avoided me or bullied me themselves, just  to avoid the stigma that would come with being nice to me.  I was getting harassed by kids two and three years younger than me and two an three years older than me in addition to the 40 kids in my own grade.  I changed my name to Kat and the chant stopped, but the bullies moved onto new and more interesting forms of torment.

If you've seen Carrie, you have some idea of what life was like from third to eighth grade.  That's a long time to spend being hated by everyone you know.  I felt like something horrible within me that everyone else could see except for me made me an object of disgust and loathing in the eyes of every person who laid eyes upon me.  This wasn't just my outfit being made fun of every once in a while.  This was sexual harassment, accusations of depraved sexual activity (this coming from nine-year-olds), threats of sexual and physical violence, constant name-calling, occasional physical attacks (there were frequent "accidents" in PE that ended with  me getting struck in the head with basketballs, but I also endured a few beatings), thefts, rude notes, rude comments, and barking at me every time I walked down the hall.  Not all of those things would happen every day (although the last two certainly did happen on an every day basis, as did the second), but they happened often enough to keep me constantly terrified.  I had no concept of self-worth any longer, and by the time I went into high school I was so messed up that I didn't know how to make friends.  Smithton nearly killed me.

Smithton has come to symbolize to me over the years societal pressures to fit in, strictly-enforced conformity, mediocrity, and suburban ennui.  Smithton used to seem like a fantasy land of new locations and new people that I could fit in with if I really tried, but it was not that.  It was a prison.  It was a toxic Stepford Wives kind of environment, and I hate it.  The people I'd been trying to fit in with were all monsters or people who refused to take a stand against them.  I've come to realize that I don't want to belong there anymore, and when I was a teenager Smithton became something I wanted desperately to escape.  Recently I did just that and moved back to Belleville, and it has been great.

So today that old playground taunt, "Katy doesn't live in Smithton," is no longer a failure on my part to fit in, but a success on my part because unlike the rest off those poor angry children who are now depressed 21-year-olds living with their parents and dreaming of the high school days when they were popular, I did not belong there and I proved it by getting out and taking control of my own life.  When Smithton became the consolation prize and not the goal, I won the game.  And now I am thrilled that I do not live in Smithton and that I never belonged there to begin with.

I've only recently been able to forgive myself for making myself an object of ridicule.  It's too much to expect an undiagnosed autistic child who didn't have a chance to begin with to be able to get herself out of that situation.  I did everything I was supposed to do and reported the issues to the proper authorities and they refused to protect me.  None of that is my fault and I had been harboring so much guilt over it that I could barely function.  The wounds seemed fresh and raw only a year ago and now Smithon is just a distant, painful memory of things that once happened to me.  Because now Smithton doesn't control my life.  I do.

Wednesday, October 20, 2010

On getting my ass moving...

I keep not posting and I really don't know why, although now that I think about it I guess I'm afraid no one's listening.  I have a lot of connections with other autistic bloggers and so on but I haven't exactly gone out and invited everyone to start reading the blog.  I'm kind of terrified of the idea that I could post something about people from my personal life and forget that it may offend them.  Because this is the first time I've had an idea of myself putting things out in public instead of keeping them in private conversations.  Oh, well, I'll cross that bridge when I come to it.

So a sorority at my school was raising money for Autism Speaks.  I was going to lunch with a friend from class and I turned and saw one of the girls waving a sign with the little puzzle pieces on them.  I was so angry.  I was just shaking with anger and I could barely think straight.  I went up to the table and asked them if they supported eugenics and told them they might consider finding a new organization.  Actually that makes me sound too well-organized.  I was kind of in mid-meltdown (and meltdowns don't leave me with much room for effective communication), so I wound up stuttering out something that made me sound a little insane and then running up the escalator.  I couldn't concentrate in class; I was shaking still an hour later.  So I stopped trying to take notes on my computer (which I sometimes use instead of notebooks for the sake of organizatino) and instead typed an e-mail to someone in my school about it, hoping it would get someone responding to me. 

I was very surprised when I got a meeting out of it with the advisor for Greek Life and someone at the Student Life center.  I organized a bunch of  data on why Autism Speaks is bad (if you don't know about this I think sums it up pretty well and a Google search can get you the info as well.)  So I managed to convince the boyfriend to take off work to come with me because I was terrified and I am not good at that sort of thing, and he works for the government so he is used to the kind of bullshit I expected to encounter.

They were surprisingly polite and seemed pretty sympathetic to me.  I was surprisingly conversational, although I'm sure they weren't used to someone being that eloquent while staring firmly at the table for an hour.  I tried very hard to fake eye contact and I just couldn't.  It always sounds like it will be easier when I'm thinking about it than it is when I try to do it.  They told me they would talk to the sorority but they couldn't really do anything about what student organizations raised money for.  Basically, they could raise money for the KKK and the school can't do anything about it.  The important thing is that they actually listened to me for an hour and took the information I gave them, along with a list of other organizations that would be more suitable to raise money for if the sorority is really interested in promoting supportive services for autistic people.

I also got information on how to form a student group for disability rights.  It's entirely probable that next time the sorority or anyone else tries to raise money for Autism Speaks, I may have a few people willing to picket them with me. 

I recently got an e-mail from Disability Access Services from my school.  For a little background, I went to DAS as a freshman asking for them to help with things related to my hearing loss and my autism.  They were kind of the opposite of help and we couldn't figure out a way to make them do what they were supposed to.  Although they did tell me I was to meet with one of them once a month for reasons I can't exactly figure out.  Went to two meetings, but the second one (with the coordinator of that office) happened while I was sick with a mild flu.  I asked her awkwardly at the end of the meeting if she knew how I could see the campus clinic next door.  She seemed alarmed and took me there herself, and told the girl at the front desk I needed a psychiatrist and it was an emergency.  I had to explain in front of everyone that I was not in fact suicidal and just needed someone to check up on my respiratory illness.  I left without seeing a doctor, feeling both embarrassed and weirded out.

Then I broke my foot badly.  I had an avulsion fracture of the 5th metatarsal that required two surgeries to fix.  I am too uncoordinated to use crutches so I was in a wheelchair for two months.  I wasn't too upset because my brother had brittle bones when we were growing up and I'd used his wheelchair before; they don't actually suck as much as my friends seem to think they do.  But my school has a lot of hills so my father had to take me to school every day.  One building I had three classes in was an older building that only had one door that was accessible for a wheelchair user.  When I tried to get into it for the first time, I found that it was locked.  There was a card slot next to it, so I tried using my student ID but it wouldn't work.  My father had to go around into the building and open the door for me from the other side.  I contacted DAS to figure out how I would get in the building.  They said they had to put something on my student ID card to make it work in the door.  I asked if they would do that for me, and they said no.

DAS has never done anything to help me, even though I have only asked them for the simplest, least time-consuming things possible.  So I'm not a big fan of them.  And today they sent me an e-mail letting me know about their exciting news.  Seems they have a new office space (yay for them) and the old coordinator who gave me so much trouble has retired and a new coordinator started in her place.  I wrote him an e-mail detailing my experience with DAS.  I then asked him if I could continue to expect the same level of services s before or if they would actually start helping the university's disabled students, which is what they are paid to do.  Haven't gotten a response yet, but I felt awesome after sending  the e-mail.  I just sent it today, so I figure I'll wait a week for a response and then decide what to do.

In other news, October 1st was my one-year anniversary with Sean, and he proposed to me.  He took me out to eat and when we were standing outside the restaurant looking at the sunset, he pointed to a nearly jewelry store and told me I had to go with him there because he didn't know my ring size.  I couldn't talk for a minute and just made excited squeaking sounds while I hugged him, and then I said yes, even though he hadn't asked the specific question. 

So we went inside and explained to the people we were looking for an engagement ring but I don't like diamonds (not just personal preference; the idea of blood diamonds makes me queasy).  So we wound up doing a custom sapphire ring with a light blue stone.  It was awesome.  Now I'm doing wedding planning.  So between this, school, and everything else, I have suddenly become a very busy person.  But I like constantly having projects so I suppose that's all good.