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 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 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 Advocacy, Autistic Identity, Parenting, Self-Care

Assistive Technology Can be Ugly: Focus on Aesthetics, not Bully-Potential, to Build a New World

The Thinking Person’s Guide to Autism recently posted a great deal on ear defenders (ear muffs, headphones without plug-ins) from Boing Boing at its Facebook group.  The deal is still there for a few days, and I snapped up 5 for my students at school.  By the way, leave and come back until they give you 10% off on your first order.  It almost paid for my shipping which was $9.95 on 5 of them, the maximum it would sell me at a time.

[Image: Those big, bulky but effective and ever-prevalent ear defenders from 3M. They’re oversized and yellow. If your head is large, they might not work since they’re not adjustable, but they’re reasonably comfortable. But they are bulky. And that yellow makes SURE people can see them on your ears. But heck, they work and Amazon can get them to you quickly.  We have two pairs around here.]

Anyway, some “helpful parent” was complaining about how ugly and bulky they are and that it’s basically license to get your kid bullied as a result.  Later, she said, not realizing I was trying to help her not come off as a jerk, that there would be plenty of times it would be “inappropriate” to wear these headphones because of the bulk.  She kept silencing the voice of 1) a more experienced Autism Mama than her (me; my kid is clearly older) and 2) MOST importantly, an ACTUAL AUTISTIC PERSON.  Yeah, she’s new to this game.

She kept backpedaling to defend herself, rather than realize she was normalizing a systemic problem with society rather than focusing on her child’s needs.

Here’s why she’s wrong and how you can make the same point without enabling bullying or accepting the cruddy world we all of us are forced to live in.

Continue reading “Assistive Technology Can be Ugly: Focus on Aesthetics, not Bully-Potential, to Build a New World”

Posted in Advocacy, Autistic Identity, Parenting

Why “You Do You” is Not Okay When it Comes to Vaccines

[Image: A white, male medical person in blue scrubs with a stethoscope around his neck brandishes a vaccine at you.  He’s got white gloves on and is like a scary-funny boogeyman.  He’s going to “get you” if you don’t watch out!]
Every so often in Catholic circles, you get the mom “helpfully” posting the link of the vaccines which have as a source aborted fetal tissue, or so the argument goes.  They claim you cannot vaccinate your child with that version, and that since there isn’t a great MMR alternative, you should never get that.

I completely and fully respect the parent when it comes to decisions about whether or not to vaccinate.  I believe the parent, not the government, should decide on what is best for his or her own child.

However, let’s take that stance apart a moment.

I believe in parent decisions because I am a Catholic school principal and I believe that if the government could, it would shut down my school.  We have had to fight for our right to exist as a school, and there are even Supreme Court decisions that are involved in a parent’s right to educate their own children as they see fit.

HOWEVER, there are also court decisions regarding whether you can force others to listen to your opinion, whether that opinion be well-reasoned, or, well, kind of nutty.

And you can’t.

Here’s the exchange that was ticking me off today:

Continue reading “Why “You Do You” is Not Okay When it Comes to Vaccines”

Posted in Advocacy, Autistic Identity, writing

Missed Opportunities: Why I am Underemployed

I’ve mentioned, before, that I’m doing a job for which I would be paid at least triple what I’m making now, with full benefits when I now have none, if I could work in public schools.

I’m not unhappy I landed in Catholic ed., but even then there are different types of Catholic school jobs.   I’m meant to lead the outcasts.  On the plus side, we are the only school in town that would be actually making a difference because we are arming our kids to move into the middle class and self-advocate.  We take the time to find the right place to succeed.

But on the other hand, the lack of compensation and access to health insurance at a better price than on the health insurance market (our premium just doubled, and we were struggling to afford the price that it was to begin with) is stressful and takes its toll on my health.  Among Autistics, this problem is somewhat normal as many of us are underemployed.  We can find a job, but it’s the best we can do since the primo jobs are saved for people who can navigate the social structures better than we can, so we continue to struggle.

Here are times I had chances at better jobs, but simply couldn’t land them.

Continue reading “Missed Opportunities: Why I am Underemployed”

Posted in Advocacy, Autistic Identity, Identity, Neurodiversity, Parenting, Teaching

We Know Our Own: How Being Steeped in Autistic Culture Can Help You (Or Your Child) to Finally Feel Better!

A parent of a former student called me to check in.  He’s had a hard time since he left.  I agreed to talk to the psychologist about our experiences with him.

I can’t reveal too much (as usual!) about the details, but suffice it to say, if I believed in functional labels (high-functioning/low-functioning), I would say, absolutely, that he was a “high-functioning” Autistic (for new people to the site, I DO NOT BELIEVE in these labels, but I will say he is very skilled at masking; the labels I only mention to serve a point as to how people who others believe are “high functioning” can be overlooked even though there is no such thing as “high functioning”).  He’s been skilled at masking his Autism since he was in a tiny school until this year, and as the demands of moving into the tween years get harder, he’s struggling in and out of school.  He’s one of those problematic types who is both academically gifted and Disabled, which the public schools have historically had a heck of a time with.

The psychologist was not impressed with my observations.  I suspect she will discount them, not recognizing what it looks like to be an Autistic who does not have “Educational Autism” (fancy language in schools for “too good at school to get help”).  Without a corresponding academic struggle, he will not be diagnosed and they will continue to wonder what’s “wrong” with him.

But I know him.  I knew him last year, and I also knew that his mom wanted him to stay with us this year since she knew he was finally, finally making progress both academically and socially.  He struggled at school for years not because he didn’t know all the things but because he lacked the executive function to turn materials in, or the impulse control to do what he was told.

He made so much progress he was three years ahead on standardized tests by the time I was done with him…in less than a year.

And yes, we were actually able to measure him on standardized tests; I’d reduced the stress enough that he was taking them seriously and able to focus on them.

Lest you think I’m bragging about being a miracle worker, let’s be perfectly clear: I didn’t DO anything…but I let him be himself and reduced his stress levels.  I removed the meaningless hoops of homework for the sake of homework and requiring my kids to sit in a desk, not move, and not talk.  And I listened to him, and argued and debated with him.

I treated him like a human being.

Continue reading “We Know Our Own: How Being Steeped in Autistic Culture Can Help You (Or Your Child) to Finally Feel Better!”

Posted in Advocacy, Autistic Identity, Neurodiversity

Difference or Disability?

When you talk to people in the Neurodiversity movement, one thing may stand out: Autistics may tend to focus on what we do well rather than focus on things we do not do well.  This makes one wonder whether Autism, ADHD, Dyslexia, Dysgraphia, or other brain-based differences are actual disabilities.  So, let’s talk about that.

Continue reading “Difference or Disability?”

Posted in Advocacy, Autistic Identity

The Costs of Hidden Disabilities: Why it Costs More to be Me

There’s a good Huffington Post Canada article that details some of the costs about being Disabled.  The article focuses primarily on the big-ticket items (mobility devices, etc.) but does mention food costs can be more expensive due to dietary restrictions.  This is an area where the ABC show Speechless is very honest; the family does not live well.  One parent works and the other is thereby more available to help the Disabled child in particular, but also the traditionally-developing children, as needed.  This is not a luxury; it is a necessity.  They even move into the most run-down house in the nicest neighborhood possible.  Why?  Better opportunities for all of their children.  This is one way in which the show demonstrates privilege in the Disability community; the family is poor, but not so poor they can’t move somewhere else.  This is most definitely a privilege not all families have.

[Image: A white woman with light brown hair wearing a white blouse, grey skirt, and black pumps, holds up a white calculator with many dollar signs on its display. She looks in shock at the viewer, over her black glasses.]
 

Let me mention at the outset that there are government funds for Disability in the U.S., but they require a family to live in poverty in order to obtain the funds. They limit how much the family can earn and what the family can own.  The idea underlying this is that we’ll help you if you’re really, really poor, but these funds aren’t to help you live a life on par with the non-disabled person.  Instead, they are a ticket to government scrutiny and shame and to keep you from becoming more of a drain on the public’s funding.  The strings associated with such funds keep a poor Disabled person poor and Disabled, but they can be a lifeline for many.

I wanted to share with you some of our family’s expenses that are “luxuries” to some and to point out how they are not for us in order to understand the costs of being a family with hidden Disabilities.

Continue reading “The Costs of Hidden Disabilities: Why it Costs More to be Me”