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

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

Thursday, November 4, 2010

Reflections on Autistics Speaking Day

About two weeks ago I posted an open event on Facebook called "Autistics Speaking Day."  I was a bit pleased with myself for inviting so many people, but I realistically expected maybe 20 people to RSVP yes.  I remember thinking how cool it would be if I got the guest list up to 100.

Not only did it exceed  by expectations, but I got nearly 500 people RSVPing yes, and over 80 blogs participated.  I was exhausted trying to keep up with moderating the pages and responding to messages about it constantly.  I got to see my name written in newspapers in countries I've never been to, and people I respect a lot actually noticed what I did, and many of them even went on to thank me for  it.  That to me is incredible.

I don't want to sound like I think it's nothing because I worked my ass off trying to keep things going, but the success we had on Monday was not my doing.  Over 1500 people were invited to the event, and I only had about 400 in my Facebook friends list when we started.  Lots of people were inviting friends and posting links.

But this was all sort of lifechanging to me because at the same time as I realize that I didn't do anything too incredible, something I did that I thought of as insignificant wound up causing this huge explosion of productivity.  I am still trying to wrap my mind around that, because I'm so used to being ignored and being an outcast.  This wasn't what I had in mind when I decided I was going to try to help Corina post about ASDay (and by the way, I hadn't even talked to her before because I'd been a huge fan of her blog but friends like her seemed out of my league).  I am really glad it happened this way because I'd been having doubts about whether anything I ever tried to do would make a difference, and now I think that it can.  If enough people get ahold of an idea like Corina's, it can go to extraordinary places.  I am really happy that I was able to be a part of this, and it really has changed my life and the way I look at things.

I know a lot of you probably saw me posting on this and thought, "Who the hell is this chick?"  You'd probably never heard of me before late October of this year, and that's because I stayed quiet and out of the way.  I posted briefly on WrongPlanet but didn't keep up there, and that was under a pseudonym.  I'd sort of gotten involved with some of the Facebook groups for autism, but I was a fairly occasional poster.  So I wasn't putting myself out there a whole lot, but I've been watching you guys for a long time.  I've grown to care about a lot of you.  I just did it silently because I thought I had nothing much to add.  And then I did have something to add, and I made this blog, but I got embarrassed quickly from posting messages no one would ever read, so I didn't post between July and October. 

When everyone started interacting with me, because of my activity with the Facebook event, I was kind of shocked.  It was kind of like you guys had all been celebrities before and I was just the fan looking in from the outside, and all the sudden people wanted to talk to me.  And that was so awesome to me that it was almost like talking to movie stars.  At that point I became obsessed with my own involvement in things, the way I had become so obsessed with Victorian England and Egyptology, and it was all I did for several days.  I'm not going to lie, it  felt pretty awesome.  I suddenly had a soapbox to stand on and I was given the opportunity to pull other people up on the soapbox with me.

I didn't really have much of a chance to put my own thoughts out there because I was so focused on everything else I had to do.  I don't think my post probably got noticed for anything other than the huge freaking list of names of the participants.  It wasn't like it was spectacular, and I don't think I got that many people who were interested in my writing specifically.  That's probably good because praise tends to go to my head.  It also gave me a better opportunity to listen to what other people had to say, and they say it way better than I could.

I was really uncomfortable when I realized I wasn't going to agree with everyone who was participating.  I was afraid of curebies and antivaxers taking over.  I've seen a couple autistic people I liked get carried off by the organizations run by these people, and I was worried that I would be seen as a sell-out.  Then I realized that I couldn't silence any voices just because I disagreed with them--after all, I got into an argument with one blogger and I had decided that wasn't a good reason to exclude him before the argument was even started.  But the event was supposed to be about raising awareness and I realized that the people who I disagreed with were working towards that goal in this instance.  Where their goals are the same, not only am I obligated to work with them but it's the right thing to do.  It's not about being fake or giving up, because I'm still really strongly pro-vax and anti-cure, but the event wasn't being fought over those issues, and they weren't relevant.  The people I worried about surprised me a lot by posting some really positive things.  So we can disagree on other occasions but this wasn't the time or place for it.  I think it forced me to be more mature than I had been about it, but it was surprising to see that change happening without it otherwise influencing my opinions on vaccination or cures for autism.  That one day the message wasn't all about me.  It was about everyone, and letting everyone speak for themselves.

It seems like I might be good at this--or maybe I just got lucky and can use the contacts I've made to help me in the future.  What I'm saying is that I want to try to do this again.  Not just Autistics Speaking Day year 2. That's been decided already.  Honestly, I want to do more events, and more advocacy, maybe even in my own area.  I have seen what trying can do and it was way, way more than I anticipated, so I'm going to try again.  I'm only 21 and I sure as hell don't know everything, so I'm probably going to trip a lot on the way, but seeing this happen is going to make it a lot harder for me to just sit back and watch again. 

So...where do I start?


  1. Kat, I was a fan of yours even before this ASDay thing came up. I was already looking forward to seeing what you would write, having read your other posts.

    That list of yours is awesome, and I'm sure it was a lot of work to do all that. I'm glad it's seemed to give you some confidence, and will expect to see it reflected in your work. Thanks for all you did to make ASDay successful!

  2. Don't underestimate what you did. You took initiative to organize something that resonated with lots of people. You did a great job. I'm glad to hear you're already thinking about the next steps. I think you're right to want to capitalize on all the momentum this event created — and there's no reason to wait until next year to do that!

  3. I'm sure we can expect great things from you, Kat. I'm glad that you're going to continue to take a leadership role. :) You and Corina really did a fantastic job with Autistics Speaking Day.

  4. Your voice is important..and it is a lovely voice...It was both those things BEFORE Nov. 1st. This was a great post-you made some excellent points. It is about community-and finding commonality. I learned a lot..and I was thrilled to be thanks. :)