Today is World Autism Awareness Day.
A couple of days before this day, I was at University of Michigan, giving a talk called Autistic Activism in an Age of the Blues.
If you click on the name of the talk, above, you can see my description of it that the Department of English Language and Literature put forth for people to use in order to decide if they wanted to come. The basic idea was to explain the background, or rhetorical genealogy, of lighting it up blue, starting with the onset of puzzle piece as a shorthand way to represent our people.
None of it has much to do with our actual people, or anything real about us.
The turnout was first of all so many people I was surprised! And second of all--this part is not so surprising because I am getting used to paying more attention to real life than to media representation--full of lovely people. To hear the ad campaigns and the news and the researchers that get funded by the right kind of corporations tell it, everyone thinks I'm a tragic burden from fearsville, pityland.
In real life, I go around in the world keeping meeting a diffuse divergent kaleidoscopic spectrum of the wide world of wonderful.
Rock on, real life. Especially Michiganders.
One of the many Rockin' People is the emerging technologies librarian Patricia F. Anderson of University of Michigan, and I'm mentioning her in particular (hi there :) ) because she made this wonderful thing, a Storify, where you can read the things I was saying at the talk that she and others picked up and Live Tweeted by writing them quickly on Twitter right when I said them. Multi-tasking Heroics! AND THEN! She put links to the real things we were talking about, like Tone It Down Taupe, so you can easily look it up.
Also when you are on there on her Storify page you can see other talks she went to and did this. It is fun.
Here's that link now, in case you want to see more details about what we talked about: The Awesome Storify Narration of the Michigan Talk.
So the lovely people and I talked about all sorts of things, like neuroqueering, and being a mother, and our own families, and school, and subversive ways Autistics deal with stigma, and how all the ways of being neurodivergent are not that different from one another...and so much more.
Take that, Stigma Awareness. I'll be aware of Acceptance, Appreciation and Awesomeness instead.
Love,
Ib
Hi, I'm Ibby. Like Dear Abby with an Eye. Sometimes I answer questions, and sometimes I question answers.
Wednesday, April 2, 2014
Tuesday, April 1, 2014
Candlelight Vigil Tonight
Today is a day of remembrance, a Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering. If you click on the link, you can join us in the virtual vigil group on Facebook. Please do.
We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.
While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a post I wrote on the topic last June. It may have no application, or it might.
My heart goes out to the families and friends of those we have lost.
Ib
We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.
While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a post I wrote on the topic last June. It may have no application, or it might.
My heart goes out to the families and friends of those we have lost.
[Pic of a candle in cupped hands, in the dark. Words: Loss leaves a heartache no one can heal; love leaves a memory no one can steal.]Love,
Ib
Wednesday, March 19, 2014
What is Autism?
What is Autism?
Click here for a short, reliable, definitive description.
Nick Walker wrote that, and I'll be glad forever.
Thanks, Nick Walker!
And thanks to all of you who click on it!
Love,
Ib
Click here for a short, reliable, definitive description.
Nick Walker wrote that, and I'll be glad forever.
Thanks, Nick Walker!
And thanks to all of you who click on it!
Love,
Ib
Tuesday, March 11, 2014
Stop Combating Me
Congress is getting ready to reauthorize the Combating Autism Act, and I hope they don't. I'd rather have them write a real thing that does what people meant for this one to do when they accidentally voted it in, back in 2005.
I'm tired of politicians and fake charities tricking everyone.
This act says it helps us and our families.
But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.
However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.
If I had not been born, my children would not have been born.
Autistic Self Advocacy Network reports:
It is fighting against us instead of trying to help us. I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person.
Please, readers, will you sign the petition and ask them to stop combating me and people like me?
Love,
Ib
I'm tired of politicians and fake charities tricking everyone.
This act says it helps us and our families.
But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.
However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.
If I had not been born, my children would not have been born.
Autistic Self Advocacy Network reports:
Of the $217 million NIH spends on autism research, only 1.5% goes towards the needs of adults and 2.4% towards improving services. We can do better. Will you help by signing our petition telling Congress to reform CAA and to stop combating people on the autism spectrum and families? You can find it HERE. (Please click and sign!)Some people think "Combating Autism" is the wrong name for this act, because they say it is helping us instead of fighting us. But I think it is being pretty honest about what it is.
It is fighting against us instead of trying to help us. I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person.
Please, readers, will you sign the petition and ask them to stop combating me and people like me?
Love,
Ib
Thursday, March 6, 2014
I Am A Mother (Part 2)
Checking in... the ABA project was a giant undertaking for someone who has such a hard time writing! Thank you so much for your patience!!
Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.
Before the boys were born, I "knew for a fact" this was not going to be able to happen.
Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.
Also it's something I think a lot of people will understand.
I am a mother.
Love,
Ib
Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.
[Image: Cheerios strewn over a hardwood floor. Not unlike what you might find in our kitchen on any given morning! Oh who am I kidding. I don't know what time of day it is, and neither do the ever-present Cheerios.]I laughed. And then I thought: whoa. This is me laughing about Food Being Where It Does Not Go.
Before the boys were born, I "knew for a fact" this was not going to be able to happen.
Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.
Also it's something I think a lot of people will understand.
I am a mother.
Love,
Ib
Monday, March 3, 2014
Accidental Bully: I don't want to be that person
There is a person out there whose experience was me bullying him, but it seems like he more feels like my non-autistic friends should have been stopping me and has never come to me about it. I wish he would, because I want to tell him I am sorry for hurting him.
Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.
And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.
But right now I am talking about my own self.
Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.
Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.
But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.
So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?
And then I remembered I accidentally bullied someone once.
Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.
Everyone else in the world, please join me in deciding once and for all not to be that person.
Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.
And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.
But right now I am talking about my own self.
Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.
Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.
But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.
So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?
And then I remembered I accidentally bullied someone once.
Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.
Everyone else in the world, please join me in deciding once and for all not to be that person.
[Image description: Logo for FlashBlog, which says Don't Ignore Cyber Bullying, Mon. March 3rd 2014. It's a claymation looking guy trying to step through one of those red negation signs as in No Smoking or so forth, and he might succeed, as the slash on it is covering his chest like a sash, and he has momentum, and one of his feet is through the red circle already along with both his hands and the top of his head.]
Wednesday, February 19, 2014
On Being Human
Like many commuters, I listen to the radio a lot. Something hit me about the way they introduce new songs. The disc jockeys talk about the fact that a new song is coming up, and if we know the artist, they'll mention another song by this artist to jog our memories. If it's an artist they think we may never have heard of, they might say something by way of introduction, something to locate the new music somewhere in our minds, prepare us in a positive way.
Most of the songs on the radio are in heavy rotation, and they phase them in and out like this, with an occasional familiar oldie. These people know what they are doing. Why would they bother doing all this?
And I thought of this thing that happened right around the time in the middle of the eighties when I was getting myself kicked in and out of high school. It was an enormously big deal, and folks my age will remember, and I'll tell you what happened in case you are younger.
Coca-Cola tried to change its flavor to become "new and improved" and this was treated like a National Disaster. I am serious, people were really flipping out about this, and it was all over the news, for some time. It was a major topic of conversation. There was high emotion. Even Bill Cosby was somehow involved, but I don't remember his exact role, just that it was A Thing, because of his standing in the community.
At this time in my life, I believed I was not a human being, not the same thing as a person. But I was just now having this reverie about how everyone else reacts to change...
And here is another thing: people often see the sensory accommodations in my office and ask if I can help them brainstorm getting the whole workplace to be more like my office.
People often read my writing on things like rushing and social and emotional confusion or distress and say they can really relate to it even though they are not autistic.
People often hear ideas of what can help kids like me handle executive functioning difficulties in the classroom, and declare, "I am going to try that for myself!"
Instead of not being human, what if I am very human, so outrageously human that it sometimes rises to the level of impairment? What if it is really that the things I cannot function without are things that would make everyone function better? My sine qua non might be every one else's sine qua shouldn't have to.
Love,
Ib
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