Posted in Advocacy, Parenting

Megaphones, Not Warriors: The “Autism Parents” We REALLY Need

 

[Image: The monument of Motherland Calls in Mamayev Kurgan memorial complex in Volgograd (former Stalingrad), Russia.; the statue is on a hill of green grass; it’s a woman with a flowing toga-style dress reaching one arm back. The other arm is raised to the sky, with a sword. The question is, is she asking her followers what they want to do or telling them?]
This piece is from one I published last fall or winter.  The words I wrote then are even more relevant to me as I work to create a school for people like me (and Disabled people not like me).

 

When you talk about creating a school that’s inclusive, you get nay-sayers talking about people pulling knives on kids.  Yes, I guess that’s a risk, but I see us more as a sanctuary for people who have been victimized by other educational alternatives.  You know the type (many of you ARE the type!)…someone made you sit in a chair at a desk and you hurt so much you couldn’t focus on your work.  You’d rather stand or sit or lie down or whatever, but that wasn’t allowed.  Or maybe you have to move, just a little bit, and you just need someone to help you find a movement that doesn’t distract others while it helps you to focus.  Or maybe you learn at a different pace, faster and/or slower than the norm.

But the worst group are the ones who insist kids need to live in the real world sooner, than later.  They need more kids around or they’ll get worse.

Without revealing too much, I lost a young teen this way quite recently.  The so-called experts said he needed more kids.  The so-called experts aren’t Autistic, nor do they have ADHD.  I do.  I know him better than they ever can.  He needs more kids around the way a fish needs to take a walk on land.  Maybe he will in the future, sure.  But he needs for now to love himself so much that he can self-advocate and thereby choose his society and advocate for what he needs for himself when he is ready.  Anyway, I don’t blame his parents.  They’re scared.  Experts scare people.

I will note that he, himself, seemed to want to stay with us, which was support for my opinion.  He was worried about leaving my school and what would I say, which was sweet.  Had he himself said he wanted to try this, I’d tell him hey, let us know if you need anything!  We’ll be here praying for you so you can have a great school year!  But he didn’t, and the mom didn’t, either.  She was afraid, not excited.  She was afraid.

That’s part of why I wrote this piece, too.  Warrior Moms have a source and so often they’re bad experts, and the real underlying motive of an Autism Mom isn’t narcissism (though it often looks like that for many layers…), it’s fear.  These experts who make money off of our suffering are the real problem.   Here’s a repeat of that post where I explored more effective parent advocacy.

 

It’s popular for parents of Disabled children to proudly call themselves “Warriors.”  Common usage in the Autism community is “Autism Mom” or “Autism Dad” or “Autism Warrior Mom” (etc.).  And I get it; I’m the parent of a Neurodivergent child, too, but in the Disability community, we tend to frown on this usage.  Let me unpack a little bit of the problem with this perspective and provide some tips for how you can adjust your thinking to be the best advocate you can be.

 

 

Ask Yourself, For Whom Are You Battling?

One of the big problems with “Autism Warriors” is that they’re usually battling a battle that’s largely in their head and focused on what they, as parents, want.  They, for example, can focus on things like accommodations.  For example, you can see a lot of Warriors in an IEP meeting that are focused on what Junior needs.

I remember, for example, a case in law school where the parent was suing because her child needed an aide in school.  The trouble was, without an aide, the child was earning grades of C or better in a time when C grades were more common.  This is passing.  As a result, the full-time aide was no longer necessary.  The court had to agree with the school district on this.  The parents were, not surprisingly, pretty upset.

Let’s take a step back and look at this from the perspective of the child.  He or she is mainstreamed, and allowed to participate with her same-aged peers.  As the child in question was Deaf, there is another layer added onto this particular fight.  First of all, Deaf culture suggests that it is imperative for Deaf children to learn to sign and also to have the advantage of spending at least some time among Deaf people.  By focusing on mainstreaming their child, the parents were focused on what they wanted as parents: their child to go to school, and further, they were focused on their child at school being treated both as “normal” (mainstreamed) and “special” (having a full-time aide).  They wanted their cake and wanted to eat it as well.

Long-term, might it have been better for the child to either not be mainstreamed and been in a room with other Deaf children learning to be fluent in sign and Deaf culture?  Might the state school have been on the table so that the child could learn to see herself as a Deaf American, and not just an American?  Alternatively, assuming the child wanted to learn hearing culture, would the aide have not been an impediment to really immersing herself into hearing culture?

Admittedly, the child in question was in first grade.  She didn’t know what she wanted (most likely), though she ought to have been consulted.

This brings us to another area of concern.

Ask Yourself, How Do You Know What Your Child Wants?

Parents often believe that because they are the parents, they know their children.  This is true to a great extent, assuming that parents also share their children’s general outlook on the world.

For example, if a white, middle class, family raises a Black child, they might have some insight about the child’s interaction with classmates at the middle class school setting.  The family, let’s say, knows the school well, having sent three of their previous children to the school.  Unfortunately, they have never sent a Black child of theirs to school.  There will be differences in how the child is perceived by teachers, peers, and administrators.  The child will have a different experience than their other children had.  So, the parents know their child (of course they do!), but they don’t really know this experience.

In a similar way, unless you also are Disabled, your perspective will be different from your child’s.  As such, you know your child, true, but you don’t completely travel the same journey as your Disabled child.

This is why it’s hard to be a Warrior when you don’t know all facets of a person’s identity.

This is where Disabled adults can help you.  We know how our parents raised us and what worked and what didn’t work.  We can give advice and help because we’re more like your child (in some ways) than you are.  It’s not that we’re telling you what to do; rather, we want you to learn from us and our experiences and then, as the parent of the child, do what you think is best.  We just don’t want you disregarding our lived experiences is all.

Imagine this: your child is 40 years old and at the therapist’s office.  Do you want him or her saying “she just wanted me to be normal, and I wasn’t!” or “She did her best, consulted with other Autistic (Blind, Deaf, etc.) people and she muddled through.”  Which sounds better?

Which sounds more like love?

We DO Still Need Your Help: Moving from Warrior to Amplifier

These are reasons why being an Autism Warrior can be unhelpful.  Too often, we focus on what WE want or what we perceive our children (or teens or adults in our care) want.  We assume because of the nature of the Disability and/or developmental stage and/or age that our charge doesn’t know what he or she wants, so we’ll fight the battle for him or her.

But all people deserve to be heard.  Our job as parents is not to speak FOR our charge; rather, our job is to try to understand what message he or she is trying to communicate and to amplify that message

Envision Twitter.  One way it’s different from Facebook and other social media is the retweet button.  Retweeting a quote “amplifies” it; in other words, it takes one person’s words and adds a megaphone to them, shouting them out over the Internet for other people to hear who might not be directly connected to that person.  Amplification can take many forms.  For example, in the Civil Rights movement, the news media provided that amplification.  If people all over the country didn’t see the violence at Selma during the first attempt at marching, it is unlikely that a second, successful march would have occurred at all.

So, amplifying is critical because Disabled people can’t fight the fight alone.

I’m reminded of a story of a Black woman whose sister was light-skinned.  They went shopping together, and the clerk was pleasant to the light-skinned sister.  She paid by check and moved swiftly through the transaction.  Next, her darker skinned sister stepped up.  The clerk’s demeanor changed, and she was direct with her, not pleasant at all.  And when she tried to pay with a check, the clerk demanded all forms of ID and kept saying each one offered was insufficient.  The line was being held up.  Had the darker-skinned sister said anything at all about this racially-motivated maltreatment, she would have been called “belligerent” and the crowd would have turned on her, too.  Instead, her lighter-skinned sister turned around and asked the clerk why it was that she hadn’t asked for any identification before accepting her check, yet she required so much documentation to take this customer’s?  The crowd turned, then, not on her sister, but on the clerk who had been called out on her racially-motivated behavior.  The lighter-skinned sister had used her privilege to ask a simple question, a question which pointed out that what was happening was not okay.  This was a question the darker-skinned sister could not have asked and had the same effect.

Let’s turn back now to thinking about Disabled people.  Some of us get flustered when we speak, some can’t speak at all, and others of us can’t be understood even when we do speak.  Still others of us, uhm, get mad a little too fast.  Disabled people sometimes do a great job of self-advocacy, and other times, we just don’t have the spoons for it (search “spoon theory” if you don’t get the reference; I’ll bring these posts back soon) for it.  This is why warrior skills can be useful!  On the days we just don’t have it in us, or when the situation won’t be helped by self-advocacy, that’s when you can help, and through asserting the privileges you have by not being born Disabled, you can help us self-advocate.

Because in the end, what we want (what all of us want) is not to change ourselves to be “normal,” but to change the world so we can be ourselves.  That’s a huge thing to want, and we can’t get there without help from our advocates.

How Speechless Teaches Amplification vs. Warrior Parent

If you haven’t seen the ABC series Speechless (On Hulu, too), do watch it!  Maya (Minnie Driver) is a Warrior mom who is learning to be an Amplifier, and while it’s hard for her, she can see that if she continues stifling J.J. (Micah Fowler, who does have Cerebral Palsy in real life, but in real life can speak; in the show he has to use assistive technologies), her Disabled teen son, by overprotection, he will not be happy.  One thing Maya, the mom, does that is unusual for a Warrior mom is that she fights with J.J., and listens to what he has to say.  She treats him like a normal person.  Her other kids follow her cue and, except for a little bit of “me drama” in the first episode, her younger children do not spend any time worrying about how their Disabled brother ruins their lives.  In this way, even as the plot problem is “Maya learns to let go,” (and, sometimes, how Dad learns to let go, too) the series screams amplification because it shows what it’s like to live in a family like this (it’s unbelievably expensive) and also points out how essential it is to learn to communicate and to talk things out, however it is you communicate.

And, most importantly, J.J. must be listened to and his needs and desires taken into account.  The second episode, when J.J. gets his full-time aide, is a case in point. Maya hates his aide, so he’s got to go (Warrior Mom).  But when she realizes how much he cares for her son and how much her son really loves this aide, the tables get turned when the district tries to take the aide away and Maya amplifies her son’s voice by tearing into them about how he would be her son’s aide and if they tried to take him away, they would be hearing from lawyers.

In this way, if you’ve been a Warrior Parent, those skills are not wasted.  Once you learn to advocate and amplify, you can use those bulldog fighting skills all you’d like.  The only difference is, you’ll be fighting alongside your Disabled family member, and not against his or her wishes.

 

Mary As Amplifier Mom

I would be remiss if I didn’t address Our Lady, Mary, and her role as “Amplifier Mom.”

Remember the Wedding at Cana?  They run out of wine and Mary finds out and (and yes, I am paraphrasing here) says to Jesus, “Hey, son, they’re out of wine.”

Jesus says, “That’s not my problem.”  (Again, paraphrasing)

Mary goes back to the hosts.  Mary knows Jesus well and she knows that what he says and what he means are two different things.  She knows him SO well that she says, to the people in charge of the wine, “Do whatever he tells you.”  She points back to Jesus.   She gives him agency.  She never tells her son “Just do what I tell you; I’m your mom.”

Jesus totally acted like a teenaged boy to his mom, and yet she knows he’s going to do it anyway.  And we know she heard what he said and yet she trusts he’ll do it anyway.  What’s more, she also tells people to do what HE says.  I also have the strong impression, she knows he didn’t mean to be rude to HER, that it was part of a message that was not per-se directed at her.

At any rate, they do what he says, and they get the water turned into wine (the best wine they’ve had all night).

Mary didn’t tell Jesus what to do; she asked him, and she paved the way for him to get what he needed (so they could get what they needed) by telling the host to do what he said.  She also had patience with her son, because sometimes what he said to her may not have been meant as harsh words to a mother, and she knew and trusted that.

But she never silenced him.

But Mary still has warrior skills: “Do whatever he tells you.”

And they did.

 

 

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