Posted in Advocacy

STAY IN YOUR LANE: #BoycottToSiri

Yesterday, I wrote about how real advocates correct their negative behaviors when they are corrected by others.  How, when you are an advocate (or want to believe yourself to be an advocate), you apologize and try to learn from what’s going on.  What mistake did you make?  How can you make it better?

What you don’t do is get into a fight with the advocate who is trying to help educate you on the harm you’re doing.

If you’re not on Autistic Twitter, you might not know that Autistic advocate Amethyst Shaber, a fantastic advocate, found out that they were referenced in a book called To Siri With Love.  It’s published by HarperCollins, a major publisher, and written by Judith Newman, mother to an Autistic and standard variety “my life sucks because my kid has autism” variety.

The author called Amethyst (who prefers they/them pronouns, and tells you so outright) a girl, and misconstrued Amethyst’s identity, using what the author believed would be a flattering description, but was actually quite condescending.  At no point does the author reach out to Amethyst, but she (the author) uses Amethyst’s work in the book and twists it so it’s not quite right.  In this way, the author apparently thinks that she herself is being helpful, but in reality, when the author presented Amethyst’s work in that way, Newman was not.  Amethyst looks into it and is concerned about the use of Autism Speaks as a reference in the book as well.

Amethyst objected, the author said “sorry” and she’d update it “in the next edition.”

The author was condescending.

Amethyst and other advocates actually start looking into the book and find passages that are eugenicist in nature including the author’s desire to have power of attorney over her son so she can get him sterilized when he comes of age.

Autistic Twitter explodes.

The standard trolls come out of the woodwork to defend this book and the author, not understanding what she’s actually did and why it’s so morally repugnant.

The author keeps saying snarky things, condescending things.

SHE WILL NOT GET INTO HER LANE NOR WILL SHE APOLOGIZE, SINCERELY, AND WORK TO MAKE AMENDS.

Check out #BoycottToSiri for the details.

Oh, and this goes without saying, DO NOT BUY THIS BOOK.  The author and publisher ought not to profit when they were given a chance to do the right thing, and chose, instead, to show what kinds of negative people are involved with this book.

 

 

Posted in Advocacy, intersectionality

Stay in Your Lane: How to Feel Empowered, Not Insulted If You Are Given This Invitation

The expression, “stay in your lane,” is getting increasingly common among Disability activists.

The term is a reference to driving, and if you veer all over the road, you’ll end up hurting the other drivers.  In addition, it points out that you don’t own the whole road; others have a right to use the road as much as you do.

Often, we say it to parent activists and other busybodies who can only speak about their personal experiences, and suddenly, they’re swerving over to talk about the Autistic experience or the experiences of another Disabled person.  It’s also used in issues of race or class or religion.  Basically, anything that is deeply personal, about which only someone who has lived the experience, can really testify about.

If someone witnesses you talking about a life experience that you do not actually live for yourself, it’s possible an activist will tell you to “stay in your lane.”

When you hear that, you might get offended.  You might try to respond that you have as much rights as anyone else to speak your truth.  You’ve seen Muslim people, Autistic people, Disabled people, Black people, whatever you’re talking about, and so somehow you know the experience.

Seeing something and even living beside someone does not guarantee that you know the experience.  Sure, you might understand things a little better than someone who has never lived with a Disabled person (etc.), but that doesn’t mean you belong in their lane, so to speak.

But that’s okay.

Let me tell you about something that will help you feel a little better if someone tells you to, “stay in your lane.”

Continue reading “Stay in Your Lane: How to Feel Empowered, Not Insulted If You Are Given This Invitation”

Posted in Autistic Identity, Parenting

To Push, or Not to Push: Figuring out How to Parent Autistics

One of the things that’s difficult about being an Autistic parent of an Autistic is knowing how to raise my own kid.

See, my husband and I are Autistics of the generation that, in general, few people knew they were Autistic.  We were the “do it and shut up” generation which meant that we were told to do things the same as our peers whether or not it “felt weird” or “hurt” or otherwise didn’t go as planned.

Obviously that only works so long, and our parents realized, over time, they had pretty weird kids.

[Image: A little blonde girl, aged around 7 or 8, holds her head against a chalkboard with writing on it, and looks down; she has a pink barrette in hair and wears braids. She looks stressed out.]
My husband used to read a lot; using his reading, which is something in white culture is considered an advantage, especially when the child reads books above grade level, to hide.  I used to do the same, but at recess, I’d swing a lot.  A LOT, as in, the whole recess, and use the time on the swings to imagine my fantasy kingdom.  Neither strategy makes a kid a lot of friends.

Side note: hiding to read or playing board games by yourself is considered anti-social in Black culture and you will be harassed and told by the adults to do something else if you use this common Autistic child trick as your escape method.

I got invited to birthday parties when we had to invite everyone, and my asthma and severe allergies meant that I was never going to have to stay overnight in a house with a dog, so I could cut my visits short.

Over time, though, they stopped inviting me, when it was an option not to invite the entire class.  Parties became subtle, and I just assumed no one had them anymore.

Oh, they had them.  They had them, and I wasn’t invited.

Continue reading “To Push, or Not to Push: Figuring out How to Parent Autistics”

Posted in Advocacy, Autistic Identity

Wisdom from the Professor: Learning Who Has Been to Narnia

[Image: an old wooden wardrobe sits on a floor under the rafters of an otherwise empty attic room. Nothing there!]
I was reading a children’s book yesterday.  I wish I could remember which, but I’ve been stimming through reading the last few days and I’ve devoured more than a dozen in the last three days, staying up late if I need to, and spending way-to-much time in bed falling asleep and waking up and reading more.

Last weekend was a major fundraiser for our school.  It was too much for me and it sent me to bed the whole weekend afterward, but with reading by my side, I readily got through our two-day week at school.

But I digress already from my main point.

The author of whatever book it was referenced the professor from C.S. Lewis’ The Lion the Witch and the Wardrobe.

If you have not yet read this series in its entirety (at least The Lion, the Witch and the Wardrobe and The Magician’s Nephew, my two personal favorites, go and read them before I ruin things for you!

I’m serious!  Read them now before reading this blog post.

Did you read them?

Okay, if not, you’ve been warned.

Continue reading “Wisdom from the Professor: Learning Who Has Been to Narnia”

Posted in Identity

High Functioning Guilt: Why Having Too Much Makes Some Autistics Struggle MORE

In general, the puzzle piece symbol is offensive to Autistics because it focuses on the image of someone being “broken” when people are never broken.  I’ve got an alternative take on the puzzle that I’d like to run past you.  I think this image is more appropriate for all types of “divergence.”

Envision this: every human being gets a puzzle, at conception (or birth for those of you who insist it comes later).  Each puzzle is slightly different, of course, because all of us are different people, but we all get a puzzle.  Some of us get 100-piece puzzles, others 1,000-piece, but everyone gets a puzzle.

Here’s the problem for people like me who got a big puzzle.

Continue reading “High Functioning Guilt: Why Having Too Much Makes Some Autistics Struggle MORE”

Posted in Autistic Identity, Identity, intersectionality, Parenting

I Can’t vs. I Don’t Want to: How the Expectations of Being Female Smother Autistic Women

In Western culture, as women, we are expected to do it all.  We are expected to work outside the home full-time because if we don’t, we’ve betrayed the feminist cause.  We’re also supposed to be perfect mothers, raising our children in perfectly clean homes being fed perfectly balanced meals or we’re a bad mother.  When we get tired about all this and ignore our husbands, we’re bad wives.

The rules also tell us we really ought to be going onto school to get a degree, then an advanced one.  This will not only empower us, but we will advance in our careers.

But if we advance in our careers, who will care for our homes, children, and husbands?

In this way, women in general are overwhelmed in our culture.

[Image: a white, middle-aged woman sits with her head in her hands. She wears a red shirt, and has brown hair. She looks overwhelmed.]
But let’s add Autism into the mix.

As an Autistic mother of an Autistic child, I had a lot of problems when I dragged my kid in public because that’s what you do.

I worried that he’d run around.  I worried he’d run away.  I’d worry people were judging me because of my kid and whatever it would be that he’d do.

And I’d get insanely pissed off at things like how the library has all these self-checkouts which are supposed to be “helpful” but unless you have a kid who wants to help you check out books, you cannot both mind a child AND do your own checking out.

Unless you let watching the child go.

That seems to be the path neurotypicals around me were taking.  They just figured, they were kids and they’d do what they did.

Of course, their kids running around doing whatever they want annoyed me, giving me sensory overload, while I was trying to manage my own son’s sensory overload because of their kids running around causing all the drama.

But for some reason they didn’t ever seem to worry about what people thought about their kids running around like little monsters.

They didn’t seem to, or have to, worry that someone might come to their home to take their child away because their child was being raised by a Disabled parent.

That is a thing, you know.  In some states simply being Disabled is enough for child welfare to take your kids from you.

And they could move on after the wretched experience at the library and not obsess over it, thinking and planning about how it would be better the next time if I only…

See, one of the gifts-that-can-be-a-curse about Autism in women is we’re super-empathetic.  Many of us can literally sense all the feelings around us and we cannot shut them out.  You know all the old people at the library by which I mean all of the adults who do not have kids with them?  They’re all judging you because you’re not minding your kids and letting them run around.

We feel that; neurotypicals shut it out.

Unfortunately we also obsess over things: we plan conversations for hours before we have them, and we mull over things that happen to us over and over again, trying to figure out what it was that we did wrong.

Because we learned a long time ago, that WE did wrong.  It’s always us.

Continue reading “I Can’t vs. I Don’t Want to: How the Expectations of Being Female Smother Autistic Women”

Posted in Self-Care

Holiday Meltdown: Withdrawal as Self-Preservation

Here’s last year’s Thanksgiving melt-down.  If any of you are feeling like I did last year, I hope it helps someone to feel like you’re not alone.  If you’ve read the blog recently, you know I’ve made some progress on these points, but I left this post untouched to point out the sheer and utter MESS I was in last year, this time, due to anxiety.

I usually work over Thanksgiving.  The beauty of having a job in the standardized testing industry where you primarily work in tests for the college-bound is that it’s generally predictable: in the fall, it’s busy.  You work Thanksgiving, the whole weekend, and you may or may not work Christmas.  The rush begins between August and September sometime and ends sometime in December.

This schedule means I don’t have to do holiday stuff except on my own terms.  We live in a culture in the U.S. where work drives everything, so if you have to work, you work.

So when my aunt decided to host Thanksgiving, I declined for all of us.  My husband and son can sometimes do Thanksgiving alone at my parents’ or my sister’s house since they feel somewhat comfortable there.  My parents’ house is so easy I usually just bring the laptop and work.  But not my aunt’s house.  My mother kept pestering about maybe we could just have my husband and son go over and I can work, but they wouldn’t and honestly, I didn’t want to and since I had the work excuse, I didn’t have to.

Then they cancelled work.

This year, we finished the administration before Thanksgiving and I had Thanksgiving and the day after off.  This never happens.

I ended up lying and keeping us safe from having to go.  I feel bad because I usually don’t mind holiday stuff, but I’m so low on spoons right now due to working the new job, having the writing teacher causing me grief, and other such fun, I just needed the time away from lots of other people.

I was having a great time playing Rift and watching old tv shows.  I was tired since I’d gotten up at 4 to write, which sometimes happens, so I was in bed for a nap by 1.  Of course, this was when my parents called.  No one answered.  Shortly after that, I was melting down.

Here’s what happened and what I’m learning from it.

Continue reading “Holiday Meltdown: Withdrawal as Self-Preservation”

Posted in Advocacy, Autistic Identity, Parenting

The Mother of Privilege: Greenlighting Eugenics Through Mama Drama

[Image: A scientific dropper pours black images of people from a dropper with greenish water into a waiting blue beaker; many other test tubes are lined up, and empty, in the background.]
In Autism circles, we talk a lot about the Autism Mother.  Typically, this person writes a blog and/or publishes posts on Facebook or Twitter to tell anyone who will listen about how his or her child was robbed from them due to Autism.  Many of them insist it was the MMR vaccine, but others, who feel a bit more enlightened by science, are taken in by the Autism Speaks mantra about how Autism is a growing epidemic.

An epidemic that must be stopped at all costs.

For some background on why we get irritated with the Autism MomTM  syndrome, visit this link to learn more about the Autist who created this term and why we take issue with these moms (or dads).

See, part of the reason why we get annoyed by these parents is because they make the narrative always about them.  When you’re a parent, though, isn’t it supposed to be about your kid and what he or she needs, and not about what you as the parent needs?  But for some reason, society allows this inverted family structure to continue: mom’s life sucks because of her child’s very existence.

You don’t get to do that with other issues without someone doing a PSA about it.  I vaguely remember they do Public Service Announcements about not emotionally abusing your kids that are basically just this narrative: children hear you; don’t hurt your children by what you say.  The words “I wish you were never born” come to mind…anyone else remember this ad that used to play?

Anyway, despite the fact that we’ve been told for years that this emotional abuse through words is wrong, for some reason, society gives these moms a “pass.”

And the thing of it is, the longer they whine and complain and are given all sorts of pats-on-the-back about how hard their lives supposedly are…that’s when the Eugenics monster shows up again, trying to pull us Autistics out of the gene pool so as to make neurotypicals’ lives better.

Continue reading “The Mother of Privilege: Greenlighting Eugenics Through Mama Drama”

Posted in Autistic Identity, School Leadership, writing

The Bend in the Road: Where to Spend My Spoons

[Image: A woods with tall, green, deciduous trees and the odd pine tree. There are two gravel paths before you.]
Thanks to those of you who had a peek at my creative non-fiction and fiction pieces last week.

For what it’s worth, Eleanor and Kate from the November 13 piece are central characters in the novel for which I’m currently seeking representation.  We’ll see if it goes anywhere.

However, I’m increasingly feeling myself at a bend in the proverbial road.  I see two options before me.  They can blend for now, sure, but in order to save my spoons I foresee making a choice, and quickly.

Continue reading “The Bend in the Road: Where to Spend My Spoons”

Posted in writing

Cat by Cat

I’m reading this new-to-me author, Rachel Hawkins.  I’m in the third book of this Hex Hall trilogy that my author brought home.  She’s into these stories of empowered women saving the universe from whatever evil is en vogue right about now: vampires, witches, dystopian universes, etc.  My author, meanwhile, is writing a short story for her writing class.  I look up from time to time, and she’s still typing away which is good because I’m almost done with this and I know there’s a fourth book around here somewhere.

My author looks over at me a moment, and doesn’t seem to see me, but then she focuses on the cover.  “It’s good, right?” she says.

I nod.  In life, I wrote a lot of children’s fantasy, so the stuff she has around here has kept me busy over the years.  There was a window when she wasn’t reading as much fiction, and she’d come back with these dry non-fiction reads that even she wasn’t actually interested in reading.  I understood why she bought them: she wanted to “engage in the discourse of academia.”  But none of that was really her passion.  A lot of those books languish on the shelves in the upstairs of the house that she shares with her husband, child, and some cats.  Oh, and obviously, me.  I’m her muse, by the way.

I glance up to see what she’s doing.  She’s gone back to typing.  She’s pretty busy these days.  We used to spend hours talking about life, about writing, about my books.  But now it’s like she barely needs me anymore.

Continue reading “Cat by Cat”