Thread by @Tonia_Says

About to get into #RollWithIt with @TaraJean.

Follow the thread for thoughts from someone who has CP.

#CerebralPalsy #Reading #Books #DisabledTwitter #ActuallyDisabled #BookReviews

Honest first thought? The fact that the cover has praise from the author of Wonder pretty much is making me side-eye the book already.

Read more: toniasays.blogspot.com/2017/08/review…

But I'm going to give this one a chance...

The dedication, though... To all the "amazing" kids living with a disability?

So early...so much condescension.

I can't with the mom prompting her daughter to "Chew. Chew. Chew," like she's in feeding therapy. She's eating her darn lasagna. Let her eat it. Not every moment of a kid with CP's life has to be therapy...and yet...

Read more: toniasays.blogspot.com/2020/06/therap…

Grandpa's got dementia or Alzheimer's, and yet "poor Grandma" is centered in the scenario. And Grandpa is super othered for being afraid they're being burglarized...

"Lauren, my aide, calling to tattle on me."

Real talk, though.

Mine was super like that.

Ellie's attitude pretty much WAS my attitude in middle school, though. Super snarky. Resentful. Full of internalized ableism.

(Though I am side-eyeing the author's use of "stuck in a wheelchair" because I know Author is not also a chair user.)

Also, can we say parentified child? Ellie is all about taking care of her mom. Physically. Emotionally.

Ellie tells mom to "Chew. Chew." on her way to her room.

I can't deny that I laughed.

Ellie talking about how her aide gets mad when she "pulls a runner" and "disappears" is real though.

I got screamed at by my adaptive gym teacher in middle school for "running from her." (Spoiler alert, I was trying to beat her to the classroom.)

Kids tasked with going to the bathroom with me to be sure I didn't fall in elementary school used to scold me when I ran from them, determined to go to the bathroom without them listening...

E is comparing her CP to a friend's - even though we don't know officially that she HAS CP at this point? - she's jealous of Friend.

(Who is her only friend at school because "birds of a feather flock together.")

In my case? Birds of a feather were GROUPED together. I was forced to eat lunch with the other disabled kids off by ourselves.

E sits in the cafeteria feels like "a doorstop."

She gets in trouble for taking a "timeout" from "everybody else's normal."

But she IS normal.

Aide is supposed to be on her "Ellie break."

Really?

Comments about IEPs both helping and harming?

True.

Getting in trouble for things other kids don't get in trouble for?

True.

The freaking baby voice?

Accurate.

Calling your disabled character a C-word (as a nondisabled author?)

No freaking way.

Slur count: 1

Also? I'm feeling like E gives off parentified vibes BECAUSE this is written by a nondisabled author (probably with a disabled kid.) So we are constantly reminded of how hard Mom works. What she has to juggle. It's hard not to get a "MC is a burden" vibe from this.

Dad's a no show in Ellie's life because he can't handle medical things or sickness of any kind. He left when E was a "still not toddling toddler."

Whenever he visits? E makes sure to "lean over" and "drool a little."

WHY are kids with CP constantly portrayed as manipulative?

"I rock back and forth on my wheels."

How, though?

As a wheelchair-user for 30+ years, I'm asking.

"We never see the same [doctor] twice."

But...shouldn't you?

E uses a stander that is supposed to make her stronger. It takes her 10 mins to get situated in it and then she has to stand there...for an hour.

Do I need to talk about how standing still is more taxing for us than walking?

No one stands for a freaking hour. Rude.

I'm concerned that E is dumping her own anti-seizure meds down the drain. Even though she has medical clearance that she's outgrown the seizures this is clearly a mom thing, which mom isn't doing / hasn't gotten to yet. Children handling their own meds shouldnt be a thing.

E is getting out mixing bowls from the bottom shelves and lining her cupboards with flour and sticks of butter.

Implying that her kitchen is at least somewhat wheelchair accessible. I'm curious to hear more details about this.

How accessible is it?

"I wish I could stand and stretch."

I can only speak for myself, but if you are not born with the ability to do something? Generally, you don't miss it.

I wish I could explain to all the nondisabled writers in the world that wheechair users don't pace.

Because we don't.

When we use up our energy so fast, we don't expend it on extra things. Why would you "pace" if you're already exhausted?

Newsflash: You wouldn't.

Also, E is still super all about Mom after she takes an upsetting call about Grandpa. Again, all about what Grandpa helped E do when he was well and not about how terrified he must be, having been in an accident, and now hospitalized.

Change in surroundings = so disorienting

But again, Grandpa's almost like an afterthought in the story. We see Mom's upset. We hear that Grandpa found the keys Grandma hid, but not anything about Grandpa that humanizes him and what he's going through...

Holy God, Grandma's oversharing so bad right now. I get that parents and grandparents are upset about the state of healthcare, but don't tell your 12 YEAR OLD granddaughter that her grandfather's in a place "like a morgue!"

E is checking in w Grandma. Grandma FINALLY is like "You're a child and you shouldn't be worried about this."

We'll see if it sticks.

E says her wheelchair is black. That she had a pink glittery one when she was little. That it's either MLP or industrial wheelchairs and nothing in between.

E, yes there is! I'll send you some links! Your insurance should totally have that info for your mom!

E transfers from chair to bed "which is harder without Mom's help, but I don't want to bug her."

Relateable. But guess what? She's your mom and you're the kid. You GET to bug her.

So...they're renting. And their rental "doesn't have stairs." But most rentals also don't have any access features built in...

Also, E has noted how tired Mom is. And gives her the orange E just peeled for herself. E grabs a second.

Parents make sure kids eat first, not vice versa, in a healthy relationship.

It's upsetting that this parentification is so normalized.

E deserves to be a dang child.

"We need to talk," Mom says, real slow, like she's about to tell me I'm adopted or something."

Wow...nudge my adoption trauma why don't you?

E's maybe transferring to a new school. Mulling over the NV kids whose parents HANG SIGNS ON THE WHEELCHAIR that says "My name is ___ and I have ___"

(Hi, has anyone heard of privacy?)

Also...she thinks maybe she'll pretend SHE can't talk bc "no one will no the difference."

Ugh, E has to be present while all the SPED people talk about her and her "needs."

She knows that by history they mean medical history. She says CP is like a "Go to Jail" card in Monopoly, sending you back to zero.

"In my case, that's birth. Day one of CP."

Excuse you?

So many details re: E's birth, even Mom's going into labor. (Again, centering the parent.)

But punch me right in the feelings with them celebrating BOTH E's birthday AND the day she came home.

I didn't know the date of my release from the hospital until 3 years ago.

So much talk about all her therapy and all the progress she made from it. Kids don't think like this. Especially kids with lifelong disabilities. Nondisabled parents focus on the milestones...

Mom legit just said she agreed to an aide for E at the new school (against E's wishes) because doesn't know if the new school can "handle you."

Nice message to Ellie, there. I'm sure she's feeling super about herself and not burdensome at all...

Whoa. Ellie called her out on it. And Mom came back with this:

Mom: Yes, HANDLE you. I'm sorry if that sounds harsh or demeaning but...

(But...you're not sorry you said it.)

E doesn't even feel like she can cry, she's babied so much already she doesn't want to seem like a baby for crying.

We so often have to stuff our feelings in the face of ableism.

E sees how tired Mom looks and decides against telling her how worried she is about starting at the new school. (Because lest we forget how much work disabled kids are to take care of...)

"What if I'm just the [C-word kid] all over again?"

WHY IS THIS NECESSARY?

Slur count: 2

Letter Ellie writes to her Dad:

"Really, though, I'm good. Wheels are good."

Um. What does this even mean?

"It's not like I have a problem sitting."

...Really?

The author's gonna make that joke.

To quote Waldo from "The Little Rascals": "How redundant."

"Water is the only place my body is not the enemy."

E claims to be able to be "weightless and float" but I suspect she's thin and muscular (CP tone) and thus would sink faster than her peers.

But why mention a life jacket to aid in the floating?

Ugh, another reminder that Mom is a Super-Parent. She fixed a flat tire in a blizzard.

So E hopes Mom can fix Grandpa.When they get to G&Gs house. (Without even asking them if they want Mom and E to MOVE IN.)

"Fixing a tire is not the same thing as fixing a person."

It burns.

"Trailers. Trucks. Bodies. There're so many things wanting to move that the air feels electric with it."

I'm so confused right now.

Are there zombies in the trailer park? Or is this some gross ableist reference to E being in a chair?

Also there is so much gravel. No thank you. I cringe to think of what access will look like for E with her chair living in a dang trailer park.

I glanced at the beginning of the next chapter, and E is just...magically INSIDE the trailer now.

No mention of the thousand access barriers she no-doubt encountered to get there.

Trailers are on wheels. (Not ground level.) Doorways aren't traditionally wide / spaces open.

I picked up on the author's use of "antisocial" to describe E's wanting to eat alone.

This was something I heard from my own nondisabled parents A LOT. I was called "antisocial" all the time. But I never coded my own behavior that way.

E wouldn't either. So ableist.

"Why would I let [Mom] help me when she never lets me help her?"

The level of parentification in this book is off the charts. Not to mention the just...missing it...on the subtleties of being a disabled child.

I know it varies from kid to kid but I NEVER turned down help - even help I didn't need - because it saved time. And because I experienced offers of help as rare.

It doesn't feel right that E would refuse help she needs in this moment.

Grandpa walks in sharply dressed next to Mom (still in nightclothes with bed hair.)

"Next to him, she looks like the crazy one."

Jeez, can we lay off the saneism, please?

MOM LET E TAKE THE WHEELIE BARS OFF HER CHAIR.

OMG. THIS IS SO DANGEROUS I CANNOT.

SHE JUST POPPED A FREAKING WHEELIE AT THE BREAKFAST TABLE.

(Adults freak out. Mom is like: "That's not why I took those off." Why DID you, though??? To get her in the door?)

P.S. If you think I'm overreacting? Grown up chair users without wheelie bars have gotten legit head injuries without them.

E is 12.

This is so dangerous.

Please put them back on, stat!

No ramp off the back porch.

Also E is currently FREEZING cold in a dress that doesn't go past her knees.

Are we going to get any insight about how cold impacts CP?

Please someone help her get warm.

Also, I'm legit terrified about E going to church.

Infantilization from older folks was the least I had to worry about...

Such a nondisabled thing (again) to be caught up in how often other ableds stand up and sit down while E just sits.

Yes, it's a thing.

It's weird to ableds because it's not their usual, like it is ours...

Okay... Here comes Coralee, the nondisabled new friend...inviting Ellie over...to her trailer.

Are the gravel and other access barriers invisible?

It's super highly unlikely that an abled inviting us over would think of all the access things.

Also, E's bar for human contact is so low that she's going to give C a chance because she asked about E's name first, not her chair.

And "That's saying something."

I mean...relateable. But also...like...doesn't she deserve more?

E thinks her fam looks "regal" in their church best. Then she says, "I think I drag down our average with my racing stripes."

The stripes on her wheelchair.

This is the kind of nonsense that perpetuates the notion that adaptive equipment is dirty / shouldn't be pictured.

So, Grandpa left the pew and E tried to get Mom's attention.

(Mom has picked THIS PRECISE moment in the middle of church to drop the truth-bomb on Grandma that Mom and Ellie are staying. Grandma's mad.)

Grandpa's missing and Mom keeps brushing Ellie off. Once. Twice.

Finally, it's clear Grandpa's at the front of the sanctuary, super upset because he's without his wallet. He thinks it's stolen. It's a whole scene. Grandma talks to him and tells him where his wallet is. Grandpa is overwhelmed by everything and starts crying.

As Grandma coaxes Grandpa to walk back to their pew, "something happens" and one of the candles tips over.

There's a legit fire.

So the parting messages here: Disabled people's voices don't matter (Ellie's). And disabled people are dangerous (Grandpa.)

No, thank you.

Bathroom is SUPER inaccessible. E's chair cant even fit through the door. Mom stands in the same room (behind a door but still.) E is super embarrassed.

She deserves to have a bathroom that she can actually USE. Like, IDK, the one in her old house???

It makes zero sense to me why E's mom would move her from a house that is marginally accessible to one that isn't...when Mom has only JUST told Grandma they plan on LIVING THERE.

Just TOLD her. No conversation. No consent from her or Grandpa needed apparently.

(I say it makes no sense but it's SO a thing nondisabled parents do - at least in my experience - to just ignore access barriers or even to create more, without a thought to how it will impact us.)

Mom only brought in one bag when they first arrived. I wonder whose she chose?

E: "Will you bring in the bath chair?"

OMG I CAN'T WITH THIS FREAKING BOOK.

She should not have to BEG her mom for access to the TUB. (And now we get copious details of how the tub is inaccessible and how E has to be "lifted naked like a baby" and strapped into the bath chair.)

"It is a tiny thing no one else thinks of: the privilege to wash yourself without help."

ACCESS TO BASIC NEEDS IS NOT A PRIVILEGE, IT'S A RIGHT.

And if the author were actually disabled, she'd know it is not a "tiny thing."

Disabled ppl having bodily autonomy is everything.

"When you're like me, you get used to seeing your body as a separate thing. Leg one. Leg two. Muscles and hair and a heart that beats. It makes it less embarrassing when people are always putting their hands on you."

From E's POV, that level of dissociation is understandable in the situation she's in. We often dissociate to cope.

BUT

The fact that this is coming from a nondisabled author is super horrifying. The dehumanization of this 12-year-old child here... I just...have no words.

It all feels super clinical and detached TBH.

And it honestly makes me feel like...this is probably what [some] abled parents feel caring for their disabled kids.

Seeing our body as separate pieces to contend with. Not as whole human beings.

It's chilling.

Filicide is committed because this kind of thinking goes unnoticed. Because [some] abled parents are convinced their disabled kids aren't actually real children at all.

I feel like I'm getting an abled parent's view of their disabled child.

But it's being passed off as the child's own view of herself.

I can't tell you how disturbed I am by this level of dehumanization.

Soaking in the tub = E's favorite thing to do as it soothes her sore muscles.

"You'd think that my legs would never get sore, seeing how little I use them, but they do."

Hi, did you forget she has CP. For a lot of us that means super tense muscles 24/7. Of course they're sore.

"It doesn't matter that I can't walk, because I can swim."

I'm all for people with CP experiencing freedom in the water, but again, the fact that this is being perpetuated by an nondisabled author is just...no.

Being able to do a thing physically does not give you worth.

It's been a few minutes and I'm still not over the super disturbing way the author cataloged E's body - as if it were parts - and she was not a full human.

It made me remember the case of a nondisabled stepparent who horrifically murdered his 7yo stepson who had CP.

Recently.

Mom and Grandma are still fighting. Grandma's still upset (understandably) that Mom decided to move in without so much as asking first.

They're silent on the porch and E comes to join them...with her hair wet after her bath. She can feel the ends of her hair "get crunchy with cold." Mom discourages E from joining because her hair's wet, but E insists, somehow transferring herself seamlessly to a rocking couch.

E has been able to seamlessly access beneath the bathroom sink, all around the kitchen and out to the back porch (at least we know there's a ramp somewhere there.) But like, transferring to seating that moves?

We know "Mom stands to help" but not whether help was actually given.

E is suddenly on the rocking couch and letting it rock her. Like, NBD.

"Mom and Mema blow on their coffee."

@TaraJean: THEY have warm drinks!

"Both of them have to help me into my chair because I'm stiff with cold. But it was worth it. I'm the glue to their glitter. They can't help but stick around because of me."

^ What IS this freaking nonsense?

Children with CP should not have to put themselves in harm's way for the comfort of their nondisabled family members.

And it's irresponsible as a nondisabled author to give kids with CP the message that this is in any way, "worth it."

We are already taught that our bodies aren't our own. That our consent doesn't matter. We are taught to push through pain.

DON'T freaking write a book that tells disabled kids it's "worth it" to push ourselves past our limits.

Mom and Grandma got E spoke-covers...which I had to Google...because I'm ancient.

And now I'm irate.

Mom can give her freaking spoke covers but she doesn't even have access or basic dignity where she's living.

SHE HAD A HOUSE. It worked for her better than this one!

E talks to her Dad on Christmas morning. He's highly uninvolved. After a less-than-stellar exchange on the phone E muses:

"I wonder if Dad misses me. I wonder if he wonders what I can do now?"

Kids E's age wonder if their dad misses them. They wonder if Dad would have stayed around if they were not disabled. They don't wonder if he wonders what she can do now.

This is purely a nondisabled parent thing.

If E does feel it, I guarantee it came from her abled fam.

C [abled friend] stops by - on Christmas Day - what the heck? And invites E over. E has never once been invited to a friend's house.

I get that access could be an issue, but in this author's world it seems more a comment on the fact that she is naturally friendless :/

E's about to bail on going to C's when they reach gravel. C is seamless about giving E the cookies to hold and offering / volunteering to push.

E hates it when people have to push her.

Wheelie bars are def gone bc they make pushing through gravel easier :/

Inside C's house, E finds C's grandpa "has a bad leg" and uses a walker. Sets E at ease.

C's grandma is a smoker, which is "bad for E's lungs, but it's bad for everyone's...so what's a couple of hours?"

Um. Breathing issues are not something to mess around with.

I can see this being something E would rationalize for herself, but the whole situation is unnecessary!

And again, the fact that it's a story told by a nondisabled author just makes it that much more dangerous!

They're barely there when C asks The Question. And E feels compelled to answer.

When I was little and kids asked me, I'd just freeze.

I kinda hate that C feels obligated to lay out her diagnosis like that (and her physical abilities.)

C: Now you ask me something.

C, you didn't exactly give E a choice here...

"I think about what my life was like just five days ago.

I don't have my own room or my own bed.

I can't take a bath or use the bathroom alone.

...But I've got people now."

^ This breaks my heart. Like, in ways I can't describe.

As someone who was kicked out of my own home after it was made less accessible to me...and then had to face dangerous levels of inaccessibility...it breaks my heart.

There is no universe in which a child should have to choose people over access.

People over safety.

People over dignity.

And the truth is...she never had a choice here.

Children cannot consent.

She's stuck doing what Mom decides.

And Mom deciding to prioritize her dad with Alzheimer's says something. Though he's not being respected now there is an inherent respect there for him as a nondisabled parent he was.

This is a respect that E will likely never get from her Mom.

Because E's been disabled from birth, she's not as easy to relate to for Mom...so it's easier for Mom to disregard E's needs, or to just...not consider them at all.

"I was [Grandpa's] favorite fishing buddy because I'd had my whole life to practice sitting still."

Can we not?

(Also, E - a.k.a. abled author - refers to every freaking accommodation E has as "special" or sometimes "extra special.")

No.

Oh jeez.

E's at the new school for the first time. Mom's in "advocate mode" and we get to hear a ginormous list of ALL the things Mom does for E - fighting insurance, fighting the school when "they thought CP was the same thing as a learning disability."

CP and learning disabilities can (and do) coexist.

I have one. I never knew until I met a friend with CP who had the same: dyscalculia (like dyslexia, but with math.)

I grew up feeling like there was something wrong with me. I tested at a 6th grade level in 10th grade math.

Learning disabilities are not bad.

Being infantilized (regardless of the reason) is what's bad.

I wish that was made clearer :/

"Today as we roll through the double doors (no h*ndicapped button), Mom's face says: 'We are the ability in disability. Hear us roar.'"

Oh for Pete's sake.

Can we lay off the euphemisms, please?

Also, I don't even want to imagine the access issues E will face in this school.

This school has never done an individualized plan, Mom tells Elle, "but they're doing one for you."

E can't ride the bus because there is no lift. E is rightly disappointed and puts her head down.

Mom: Put your shoulder strap on and stop moping.

I swear to God, every single book like this? Written by an abled parent? Misses the point so tremendously when their kid with CP encounters ableism and / or access barriers.

Their feelings are dismissed or minimized.

We are not allowed to be sad or disappointed.

So harmful.

E and the whole dang family is in on Grandpa's doctor's appointment. I get that she's 12. But from a storytelling perspective IMO this is just an excuse to let EVERYONE get in on the state of Grandpa's health...when it's NOT OUR BUSINESS.

Grandma's in fighting shape, luckily, and pushes back against the doctor advising them to institutionalize Grandpa. "We're all deteriorating. We might as well do it together."

Thank you, Grandma!

But then Mom stays behind to talk to the doc alone and I'm super nervous it.

Grandma and Ellie find Grandpa in the waiting room talking to a little girl. He says to Grandma, "Can you believe our little granddaughter finally learned to walk?"

Ellie, right there the whole time, wheels away. She doesn't know when she started crying.

Moments like this (faced with a family members relief at a lack of disability) are crushing.

But coming from a nondisabled author it feels weirdly plot-devicey and exploitative...

They leave the appt way past lunchtime and E hasn't eaten since breakfast but she's too upset to eat now.

If anyone needs to eat, I'm guessing it's probably you, love.

Hugely overlooked facet in the lives of kids with CP is our inability to access basic needs. Kids with CP go without food / water / bathroom on the regular because of access issues.

(Blog coming soon on this topic.)

E needs to be able to eat, so she needs emotional support now

Also E has now been in her chair for too long. Her legs are sore and the seat cushion is rubbing a bruise into her tailbone.

Tailbone issues are no joke. I've broken mine around E's age. She's probably getting some kind of sore, rather than a bruise. She needs some ice. >

And no more time in the chair for a bit. >

E got her first chair at 4, and started realizing "all the things she could and could not reach."

You know what actually happens? You get a wheelchair (as a kid with CP) and you realize, all the things you CAN reach and all the places you CAN go!

Holy dear Lord on a cracker.

WHY do we need to hear that the Food & Co = "a [C-word] kid's dream???

Slur count: 4 (because I'm counting the other C-word as well, in reference to Grandpa.

P.S. This is a middle grade novel. Meant for children. Way to teach them hate speech.

I PROMISE YOU there is a way to indicate your disabled MC is happy / relieved / joyful about having things accessible that DOES NOT include the use of that word.

If you are nondisabled, you don't get to reclaim that word - not even due to proximity / association.

E is finally hungry. The first thing she goes for are the gross sausage biscuits that stay warm "all day" under the heat lamps.

No, Ellie. That's gross.

(Also, they can just eat the food IN THE STORE and no one thinks they're stealing. White privilege, anyone?)

Another kid in the store comes up to E and tells her she is "very attractive."

In E's experience, "nobody would call a girl in a wheelchair attractive unless he was messing with her..."

Can we calm down with the self hating, please?

E finds the kid "creepy" and tells Mom she was "verbally harassed." Mom asks if the boy's name was Robert, and it's confirmed. Mom says Bert is joining Ellie in the carpool on the way to school.

E says no. Repeatedly. Apparently freaked out.

...Which is problematic but we'll get to why in a minute.

First we must read about how E waits "until Mom stops laughing" to explain more.

Again, why is a kid with CP in distress funny?

Mom says she suspects Bert is "on the spectrum" and that he's "probably never been tested." That he's had a hard time on the bus, etc.

It's such freaking tropey autistic representation, I can't. Plus way to super-other him right away!

The autistic rep is not exactly my lane.

Here is a good thread re: the autistic (mis)representation in this book:

https://twitter.com/AaronLinguini/status/1261670980155572224

E can see how Mom is "trying to place bandaids on all the broken people. It's what she does."

And later, E tells Mom:

"Oh, I get it. You're trying to fix all the cr*zy people now, right?"

Newsflash: Disabled / Autistic people don't need to be fixed.

Slur count: 5.

Mom calls out E's use of "cr*zy" but only because E has included Grandpa in her lumping of people in that case.

For Bert, she urges that E "be a little more open-minded" and for her to "have empathy and sympathy."

E thinks of the little girl Grandpa mistakenly identified as her in the hospital. She thinks about what it means to be attractive "and how I will never be."

She then determines she is "fresh out" of empathy and sympathy.

The "empathy and sympathy" refrain reminds me of how in books like Wonder, "Be Kind" is the motto that's repeated throughout.

But kindness feels a lot like pity, when it's just given BECAUSE we're disabled.

When are nondisabled authors going to begin encouraging their readers to treat disabled people with respect? With dignity? Not because of exceptional intelligence. Not because they overcome their disability in some kind of way, but because we are freaking human beings?

Ellie is "never going back" [presumably to school?]

She and Mom are in their room and "I've pulled myself onto the bed, but I'm too tired to drag the quilt over me."

Why phrase it like this?

If you're going to set your MC up to face access barriers on purpose, at least give them the freaking dignity to not talk about how they are "pulling themselves" places.

"I got up onto the bed," works just as well AND E's dignity is respected.

"MY SKINNY, ST*P*D, USELESS LEGS."

Oh no she did not.

You stop it right dang now!

Like...are you TRYING to encourage kids with CP to hate themselves? (More than we are already taught to hate ourselves?)

Grandma insists they go out to the porch.

Ellie: No, Mema, it's too cold.

Grandma: You're a tough girl. You can handle it.

HELL NO, SHE WON'T GO!

Seriously! It's JANUARY in OK! There is literally NO reason to attempt to force E to relocate from a warm bed!

I'm furious!

E's inner monologue:

"No, I'm not tough, I'm an invalid. In-valid. I want to say it but I know she won't listen."

I'm sure she won't. Because everybody in this child's family steamrolls her and none of her emotions or needs are validated.

Whatever happened at school is clearly having an effect... :(

She's out on the porch now (at least this time she's got a blanket, and hot chocolate that is "already only lukewarm.") But she shouldn't have to risk her health / wellbeing like this. There's no need for it.

Grandma tries to relate to E, saying she remembers what middle school is like. E thinks Grandma is a force of nature and:

"I'm not strong like that."

Sweeping general statements like this do us no favors.

Plus, it ignores / overlooks the complexities that exist in this situation. It's not that Ellie is not strong. It's that being surrounded by abled kids as a disabled kid - and a chair user? You are keenly aware of the imbalance of power.

She doesn't have the privilege of being in a position where she holds ANY power at all. Strength has nothing to do with it.

And I promise, there's a way to convey this subtlety - even in a kids book.

The fact that whatever happens in school is told in a flashback is... It takes away the immediacy. It gives the reader a sense that Ellie is an outsider.

But if we were WITH Ellie from the start? We would immediately understand her feelings.

8 hours earlier, Mom picks up Bert in the van with E and C. Ellie and Coralee immediately make fun of Bert's satchel and as he clarifies what makes it different than a purse, Ellie thinks:

"He would be right at home on the short bus."

NO FREAKING WAY. Can we STOP this?

E spends the rest of the drive to school being snarky to Bert in her mind.

Mom tells her that she's still securing an aide. E voices her objections. Mom ignores her.

E and C walk in and kids part so they're in a "bubble of aloneness."

Mom is praying in the car :/

(No one ever parted for me. In my experience, kids don't notice, or if they do, they just keep moving. It made navigating halls with crutches downright dangerous.)

Are they so far out in the boonies that E is the first disabled person they've seen?

Oh and part of E's argument against needing an aide was "I'm stronger than I was." Mom agrees, as if this is why E should be able to handle having an aide...

CORALEE OMG. Blowing E a kiss? Straightening her backpack? Telling her to, "Be good, honey-baby-child"?

NO!

Also Rachel, the not-aide is there, and just put her hand on E's wheel...

1) E did not consent to that, Rachel!

2) Who touches a WHEEL? That's like touching the bottom of someone's SHOE? So gross.

Rachel says if E needs to use the *bathroom* (whispered) to come and find her.

E thinks, "Never, never, never."

Same, Ellie.

Also, Rachel, there are non-awkward ways to let Ellie know you're around to help her if she needs...

Also? Who among us WOULD feel comfy trusting a complete stranger of an adult to help us use the bathroom? At 12? Think about it.

Yet these are the kinds of situations disabled people are put in all the time...like it's NBD and we should just deal with it.

E arrives in homeroom and instantly sees it is not accessible. The teachers back home usually leave a "blank spot" open for E so she can pull in and use her chair + tray as her desk.

"The teachers usually move a desk." That's what happens.

A person does not fill a "blank spot," an object does.

Ellie wants to cry dealing with ALL the million access barriers in the class.

(But somehow...in the trailer...her home...where she should feel safe...those don't matter, remember?)

Bert makes a path for her. Teacher comes in and urges class to do some "rearranging."

This does not help.

It's loud and embarrassing.

Ellie wants to disappear, "But that's the one thing you can't do in a wheelchair."

Is it embarrassing when teachers do crap like this? Yes!

(I once had a teacher in HS have everyone stand up in order to practice being archaic statues. As an afterthought, she laughed awkwardly, looked at me, and said: "Tonia, you don't have to.")

No, you can't disappear in a wheelchair.

But guess what? Ableds can't disappear, either! Weird! It's one thing people can't do who aren't...IDK...wizards...

There's no point in making statements like this.

We know E feels alienated. Don't go to the extra work to "prove" it

Bert is sharpening an "old-fashioned" number 2 pencil...well, then, call me old-fashioned...

E says that B is "completely unaware of anything else going on in the room" and for one second she wishes she could be like him.

So...it's not enough to spread harmful ideas about kids with CP...now the book is doing it with autistic kids as well?

Awesome. <-- Sarcasm

All E's teachers are either ill-equipped, ill-informed on CP or think that they need to share the medical history of a family member who also has CP and is working as a manager at Target "in spite of it."

Just no.

"I don't drink any liquids all morning so I don't have to use the bathroom."

I hope the author also goes into how dangerous this is and addresses it in a way that allows E to feel comfy drinking during the day.

This IS a very real problem that people with CP and other disabilities deal with and it needs to be addressed responsibly - especially in a kids book.

Also, I'll just leave this here:

Thread: On Bathroom Usage and CP:

https://twitter.com/Tonia_Says/status/1082105493265494017

E asks C how she has so much homework already. B points out that education is a business and it would be financially irresponsible for teachers to NOT assign homework.

C: Bert, we need to work on your filter.

No, we don't actually. E ASKED. He answered.

Rachel (the not-aide) comes back and nonconsentually puts a hand on E's arm.

A girl walks by and sees E's squeeze pouch of applesauce and laughs. E is exhausted. Wants to go home. Now she's embarrassed to be eating the wrong food. She puts it away.

(Again, with the inclusion of real issues, but I hesitate to think that any of these things will be appropriately addressed.)

Exhaustion is real.

Not drinking, not eating in order to not use the bathroom?

Also totally a thing that happens.

But please follow it up.

Um, C just took E's lunch back out of her bag and set it on the table. (No, thank you!)

Also, she just told Bert that he's "a bit off."

B: A bit off what? The average? Bc if so, I take it as a compliment.

I LOVE HIM.

Ellie: "So, everybody's staring at me, not because I'm in a wheelchair? It's because I'm from the park?"

Coralee: "You got it, sister..."

This might be true for Coralee, but for Ellie, it denies a huge part of her lived reality and experience. It's akin to gaslighting.

Rachel (the not-aide) tries to help E change into a gym uniform. This terrifies E. (Again with the complete stranger about to see your business - clothing changes = super intimate.)

Principal + Gym Teacher have a meeting and decide she can stay in her jeans but change her shirt.

This was exactly the accommodation I had, but it was in my IEP. If memory serves, this school was going to make certain E had an IEP as well. Why wasn't this in place beforehand?

Gym Teacher hands E therabands to stretch with. E is like...delighted to see them.

I'm having flashbacks to accidentally snapping myself in the face with one as a 7yo. It came off the bottom of my shoe while I was stretching. It snapped me in the face. My head hit the wall.

My school physical therapists? Laughed at me. The whole thing is immortalized on tape so we'd be sure to stretch over the summer.

Speaking of...

E tells us she's been "slack about my exercises since we moved. I'm supposed to stretch every day to keep everything loose. I can feel the tightness built up in my ankles."

I can't TELL YOU all the feelings this gives me.

I guarantee you, this author has NO idea how many kids with CP grow up like I did - solely responsible for maintaining PT.

She has no idea how many of us were regularly threatened with surgery if we did not - either by parents or medical professionals.

Gym Teacher used to BE a PT. He's glad E is there because it "lets him practice his skills."

She's not a freaking guinnea pig.

He says to "rest up, because this next part, you can do with everyone else." They run laps and E feels like an extra in Murderball, which is apparently some Paralympic movie??? I wonder how many disabled people actually know it? I didn't.

Also? Coralee JUMPS ON Ellie's LAP for the final round. E almost drops her. I kinda wish she would? You don't just jump into someone's ARMS while they run and EXPECT them to carry you - esp if you are the same size!

E is so exhausted by the end of the day that she cries. She doesn't even have the energy to get back in her chair from the porch - she's half frozen by now - which is likely sucking all her energy away even more.

From what I can gather? The worst part of E's day was dismissal where all the students filed past E, C and B on the way to their buses. When the buses left, the van showed up.

E is tired and cold from waiting outside in January for all the kids to get on the buses.

E tells us dismissal is the worst, but I don't GET that from her. In fact, it's hard for me to discern what exactly is so upsetting.

I wonder if it's the exhaustion and the cold combined with feeling invisible?

But like...I have CP. I feel like it should be more obvious what exactly happened to upset E, or if it was a specific combination of things? But I'm just confused.

Of course, that could be because I'm reading / tweeting after 1 AM...but that's neither here nor there.

I was bracing myself for some major ableism. Especially considering all the crap E's already gone through courtesy of her own family.

Grandma says she's done the first day, and "who knows what Day 2 will bring" but this only scares Ellie.

E says the aide has GOT to go - she says it loud and sassy bc Grandma wants her to be brave..."and maybe, if I pretend to be, it'll turn true."

Oh, love.

I wish E didn't have to continually deny her feelings for the comfort of adults in her world.

E's arms are like jelly from pushing herself all over school but she's not telling Mom, bc Mom has somehow relented and is letting her go to school without an aide?

Again, this plot point is just magically resolved? After it was alluded to that Gram would take care of things?

STOP. SAYING. CR*ZY.

Slur count: 6.

Stuff like eating challah with Grandpa makes E glad they're there..."even if Mom has to carry me into the bath."

Oh my GOD. STOP TALKING ABOUT IT.

YOU [AUTHOR] MADE HER DEPENDENT! YOU TOOK AWAY HER ACCESS! STOP EXPLOITING HER ON TOP OF IT.

C: You ARE coming to this game whether you want to or not!"

(I'm sorry, Coralee, that's not how this works! Ellie has a choice about where she goes and how she spends her time...)

E does not want to go "sit in my chair at the end of the stands like a grandma."

Just in case we forgot how amazing Gym Teacher The PT is, E reminds us now. He gave her stretches to do that help with the aches that keep her up at night.

"He might be the best PT I've ever had, but I'm not telling Mom or she'll stop feeling sorry for me."

WTF???

Attention (nondisabled) parents: We don't want your pity. We are not freaking manipulative tyrants. Please stop depicting us as such!

It goes on...

"Then I'd have to wave goodbye to the extra ten minutes' sleep time in the morning and the half hour of screen time at night."

OH. MY GOD.

Sleep is a basic need. People with CP use 3-5x the energy that nondisabled people use (at least!)

And you cannot TELL me that Ellie does not absolutely NEED at least a half hour of downtime.

In addition to exhausting herself to tears at school + access barriers there and at home, she NEEDS time to just BE.

To have these things framed as things E gets bc Mom feels sorry for her and NOT as the basic needs any child is entitled to is just plain gross, harmful and abusive.

Ellie should not have to manufacture pain in order to get her needs met.

This book is so messed up.

C: Nope. You do not get to pull the [C-word] card.

NOPE, CORALEE. YOU DO NOT GET TO (EVER ) USE THAT WORD.

Coralee (+ nondisabled authors, clearly) have NO IDEA how it feels to be constantly facing access barriers, social barriers + be expected to push past our exhaustion for nondisabled comfort.

The fact that the author DARED to put this word in here? This line?

It's egregious.

After being 70 kinds of offensive with the C-word, Coralee says she is singing the National Anthem and she needs her best friend there to support her.

Next line:

"This catches me off-guard. I've never had a best friend before."

E thinks this is "way better" than the girl in kindergarten who decided they would be best friends and pushed E's chair all around the playground.

E: "I want to press pause on life and savor this moment like the most perfect first bite of pie."

Right...because hearing your BEST FRIEND use an ableist slur against you? That sure is a moment to savor... <-- Sarcasm.

E agrees she'll come but says she's bringing B because she thinks he's lonely with all his siblings gone.

C: Robots don't get lonely.

STOP WITH THE FREAKING DEHUMANIZATION ALREADY.

E reprimands C mildly and C is like: "Just kidding. You know I love that weirdo."

OH MY GOD JUST STOP.

It doesn't make you cool to be a jerk to other people! You were not kidding, C!

(And it's just irresponsible that an actual nondisabled adult put this content out without adequately addressing ANY of it.)

Disabled people are at an exponentially higher risk for (all kinds of abuse) than the rest of the population. Punishment (from parents) can = more punitive bc it is accompanied by a fundamental lack of respect. We are often not believed if we do tell.

Whether because of communication difficulties or because of ableist assumptions, or some combination.

When I disclosed abuse (that happened as a child) to a trusted person, they instantly sympathized with the person who harmed me:

"I'm not saying what [they] did was right, but it had to be really hard on [them] what with you and your sister's sp*cial n*eds."

No matter WHAT is done to us-what violence at what age - our caregivers will ALWAYS get the benefit of the doubt because society thinks we = burdens.

Content like this is only helping a whole community of us to be harmed. It is only justifying further harm to us done by "loved ones."

Because we are portrayed as "robots." As "body parts" as manipulative people who could work harder but just choose not to.

Nondisabled people reading this thread: Please stop depicting us this way. Read content by disabled people. Educate yourselves before you write about an entire segment of the population who WILL be harmed because your words have given them permission.

E: I actually got a black eye once while we were waiting to see Santa at the mall.

(I actually experienced having a full-grown man fall backward and land HARD in my lap about 10 years ago. I injured my leg badly. But didn't cry out / get medical attn bc medical trauma.)

C sings the National Anthem and everyone is so shocked by her awesomeness that E and B forget to take pics (like Coralee said to) until B takes E's phone and frames a couple at the end.

C asks if they got pics. B hands over E's phone [without E's consent] "and that's the last E sees of it for the rest of the night."

Their team loses but E says the night is a success.

"I don't even mind that not a single person spoke to me outside of Mom, Coralee and Bert. Three is enough. Three is more than I've ever had before."

In-freaking-furiating.

Again, Ellie is settling for the scraps of human dignity all the ableds allow her AND she's super grateful to have it.

1) Coralee is not your friend. She called you a slur and used you to take pics of her and then took your phone!

2) Your mom is SUPPOSED to talk to you, Ellie! It's part of her job, as a Mom. It's not a special favor you should be grateful for.

3) Bert's being treated like crap, too. (And being kissed without consent by Coralee WTF!)

These are not things to be grateful for! This is not how friends act!

I grow more and more horrified the more I read of this dang book.

39% more to go...

Ellie has to give a demonstration speech to her class where she teaches them how to do something.

"Other than wheelies in the chair and how to whistle with two fingers, I'm out of ideas."

Her use of THE chair is strange here. Most, if not all of us, say MY chair.

P.S. I TOTALLY gave a speech in Oral Communications class in eighth grade about How to Pop a Wheelie! It's a solid speech topic! Ellie should go for it!

Annnd Ellie just caught Mom looking into "assisted living" places "for when we can't take care of Grandpa anymore." :/

E backs up carrying hot tea (literally HOW, though? This is one thing I CANNOT safely do as a chair user.)

Like...Mom COULD get the tea in this scenario, if the author had chosen to write it like that.

But instead, we have Ellie ferrying hot beverages and scalding her lap!

And Ellie just continues to talk to Mom about how they're a family and they'll take care of Grandpa. (Which, I love! Go, Ellie!)

But...she just scalded herself with a burning liquid. Get the child some aloe and stop arguing with her, Mom!

There is NO reference to pain, no reference to Ellie crying out. Just, tea sloshing onto Ellie's lap. Like NBD. I've scalded myself (unintentionally) just pouring freshly brewed coffee.

Without immediate treatment she's at risk for blisters. I can't with this neglect

"I've never wanted to get up and run out of a room more in my life."

Except, when you're a chair-user your whole life, you don't pine for the ability to run out of a room. You just...wheel out.

E: So that's it then? [Grandpa] does a few things to inconvenience people and we ship him off?

Preach, Ellie!

"I tip my chair back, like a horse rearing up, and then let it thump down hard. It's the closest thing I can do to a stomp and it's not nearly good enough."

OMG STOP IT.

Chair-users DON'T DO things like ableds do! Not everything has an equivalent!

We smack a table, our armrest, or maybe our own lap, for emphasis. Our way IS good enough.

The wheelie-stomp is not BECAUSE IT'S NOT A THING WE DO!

Not everything has to be abled to be "good enough!"

(Also, @TaraJean just reminded me that Ellie STILL has no wheelie-bars on her chair, which makes her wheelie-stomping downright dangerous. She's currently burned and she's risking a concussion all at once right now, and Mom's just like, "OH, SHE'LL BE FINE.")

'Is that what you'll do to me then, if I get to be too much to handle? Do you have a file of 'homes' for me, too?"

E finally said the thing she never even let herself wonder until now bc "Mom would never do that," but she never thought she'd do it to Grandpa, "and here we are."

When I was born, it was still common practice to institutionalize disabled babies. Our grandma went against the grain at the time and insisted we be raised at home.

As recently as 1990, parents with disabled babies were encouraged to institutionalize their children & not bond w them.

And I WAS essentially raised in an institutional setting - hospitalized as I was for the first year of my life.

This was in the US.

Disabled people are still threatened with institutionalization if we do not "work hard enough" / conform to nondisabled norms and standards of behavior.

Don't let yourself be fooled into thinking that Ellie's fears here are not 1,000% valid, because they are.

E: I know she'd never really do it...

The truth is, many of us DON'T know. And Ellie said as much earlier in the excerpt. She doesn't know either. And that's terrifying.

E: I guess family is only family as long as it's convenient.

THIS is often, exactly how it feels.

But I'm not holding my breath that this book will be able to accurately address the nuances of such a complicated issue...

Holy shit.

Ellie confides in us (the readers) that she went to school with a girl named Rita in elementary school, who had CP "and some other stuff." R was bussed in from A CHILDREN'S HOME.

R was always dressed "bad -- so she looked like a giant toddler" and "smelled funny, like hospital sheets and diapers."

One look at the brochure for Grandpa's nursing home? And all E can think of...is Rita.

How traumatizing.

No wonder Ellie is reacting so strongly to the idea of Grandpa going into a nursing home (against Grandma's wishes - likely Grandpa's too - but no one's asked him!)

And how traumatizing for Rita.

I hate how the author spends time (as E) guessing at why R's parents put her in the children's home. "Maybe they were too poor, etc."

Like, if you're a disabled kid? And you see a kid with your same disability in that situation? You're not going to be like HMMM I WONDER WHAT CIRCUMSTANCES LED TO R's PARENTS MAKING THIS DECISION...

Those thoughts? Come from a place of privilege.

If you're disabled? Your single reaction is terror. Because you KNOW it could be you.

ALSO THIS IS A FREAKING CHILDREN'S BOOK AND I AM POSITIVE THERE WILL BE DISABLED KIDS READING IT - MAYBE EVEN KIDS WHO'VE BEEN INSTITUTIONALIZED AND DON'T NEED TO BE FREAKING TRAUMATIZED IN THIS WAY.

I KNOW disabled adults have experienced it / have been threatened with it!

"Mom didn't say a word to me last night until she came to bed."

Soo, we have the silent treatment from Mom. Which is super abusive.

(And we'll see the effect it has on Ellie coming up.)

She woke up in the middle of the night needing to pee but instead held it until her stomach cramped because she "wasn't about to ask Mom."

Again, the implication as it stands here, feels a bit like we're supposed to think Ellie's pouting, when the more plausible rx would be fear

E tries praying to keep her mind off it. For Grandpa to be healed, and for her to get stronger & walk better "so I won't need help from anybody ever."

My God. My heart is breaking for Ellie right now.

Reminder: It's not just that she needs help in the bathroom. Ellie literally cannot get INTO the bathroom because of access barriers.

Because Mom CHOSE to move out here, into an inaccessible place, giving no thought to what this would mean for Ellie.

And then, it just...moves on?

Much like the instance where Ellie scalds herself with tea, there's no indication of what ended up happening here. No indication if she ever got the help she needed in time.

(And no, I'm not saying write a tell-all account exploiting her vulnerability in this moment. I'm saying FOLLOW UP. Don't write your character into a situation and then not resolve it.)

Are we just supposed to assume she got help?

What with Mom icing her out, I'm not holding my breath...

This is one of my pet peeves re: abled authors writing disabled characters.

Bert comes over with flowers, in a suit. Ellie regards Bert "like [he's] a tiger at the zoo" and swipes her flowers onto the floor. She says she's not going to the V Day dance because:

"Do you know how many bad movies there are where the poor little [C-word] girl goes to the dance?"

Author, your nondisabled is showing.

If the only reference you can think for E to have in this situation is bad MOVIES where a disabled girl goes to a dance and is pitied?

She may not have gone to a dance before, but I guarantee you E has been excluded from physical activity.

[You all know how I feel about the C-word by now. There is NO REASON TO KEEP DROPPING IT IN LIKE THIS.]

Slur count: 7, or something? Like 5 of them are this C-word.

Everyone is apparently in on B coming over and...not inviting E to the V Day dance??? Mom is the only one who looks confused. Now Coralee's here, too, saying going to a middle school dance is "L*me."

Newsflash: The word's a slur, too.

Don't use it.

They won't tell Ellie what's up. Claim it's a surprise.

Ellie: Then the answer's still no.

(Why do I have the feeling that her "no" will not be respected?)

E agrees to go after B swears she will not have to dance at the surprise location. She goes upstairs to contemplate wardrobe choices. C says it's jacket weather.

Mom cautions it's 25 degrees and maybe they all just want to stay in and watch a movie.

Then we find out Mom and Ellie "haven't said two words to each other since E found Mom with those brochures for Grandpa last night."

The silent treatment persists.

Ellie insists she's going.

(She's also 12 and an actual child, so Mom has can say no for safety here, but I suspect she won't.)

E tries to put leggings on, but they won't go all the way up.

"It's easier on the bed."

(Like..if she's lying down maybe? For me, it's easier to dress in my chair, because it has back support so I can keep my balance.)

E doesn't seem to contend w/ ANY balance issues.

Ellie has also refused Mom's suggestion that she wear long underwear. (Warm, yes, but also a surefire way to ensure some bunching around her tailbone, which...is already not in a happy state.)

E: "I'm not a baby."

("This would be more impressive," E claims, "If I weren't pulling my leggings up over my bottom.")

Whyyyyy?

Seriously. Since when does DRESSING make someone a baby?

They arrive at their surprise destination.

"Bert holds out a hand to shake [Mom's] but she ignores it."

WTF! Seriously? How rude ARE you???

Bert has twin brothers. Bill and Will.

"They didn't know they were having twins, and they only picked out one name."

MY mom also didn't know she was having twins and only had one name picked. She did not name us both Tara.

Mom: Call, if you get too cold.

She tries to stuff mittens in E's pocket and E rolls away.

Good job, Mom, for 2 seconds, you're doing parenting. :/

"I'm beginning to think Bert is the most normal person in his whole family."

STOPPP.

Bert keeps sharing facts about the St. Valentine's Day Massacre and Ellie and Coralee are policing every dang thing that comes out of his mouth, screaming, "FILTER!" at him and poking him with their golf clubs.

B: My point is...romance has no place on this holiday.

Yup. Still love him.

Ellie is super cold by the time they're done, (so of course they stop at Dairy Queen for ice cream...) I don't claim to understand the logic.

Mom runs down a mental list of all the things she wants to be reassured of:

Is E glad they're here?

(What is she supposed to say?)

(It's not like her giving her opinion / experience will me an iota of difference...Mom doesn't give 2 craps about all the access barriers or E's fears.)

Is school going better?

(Better than what? E admits in her head that ppl still don't talk to her, but then justifies it...)

(...Saying that ppl only talk to their own friend-group anyway...)

Mom goes down the whole list and then is like I JUST WANT TO BE SURE YOU'RE TAKEN CARE OF.

But you don't Mom. You want Ellie to reassure YOU. Which is not her job, as your CHILD.

Mom says she's "sorry E had to find out this way" about the brochures re: Grandpa and that he's "not going anywhere for a long, long time."

...Which is in no way reassuring for a kid like Ellie...because it means he IS going, eventually.

Ellie spends all of the next day blowing her nose but she "doesn't mind" because mini golfing gave her an idea.

This is such a harmful recurring theme.

She's injured. There's no indication of her experiencing pain. She's denied basic needs / access / accommodations but she's happy because 3 people talked to her.

She can't have privacy or dignity in the bathroom but no matter, she has people now!

She's so grateful for so little.

(Which, yes, is how a lot of us are forced to live, but it ignores the conditions she is being forced to live in, and how NONE of the abled characters would DREAM of willingly subjecting themselves to these conditions, much less being HAPPY about it.)

31% to go...

"I have to get Bert to carry all of my supplies."

Which would be fine if he was your friend, but I feel like you tolerate him at best, Ellie.

...Also, you know who would be good at carrying stuff? An aide.

(I know, I'm the last person to suggest that, but still... It's not Bert's job to carry all your supplies.)

Ellie took our advice (not really, LOL) and gave her speech on something she's really good at! She showed her class how to bake Russian tea cakes - YUM!

She tells Coralee how well things went, though, and C is just like: "Well, don't get used to it."

Ugh. Coralee is really starting to frost MY cookies :/ Can't Ellie just have her moment and be happy she did a good job without Coralee dragging her down???

Ellie: Why can't you just let me be happy for one second??? ....Why can't you just let me be normal?

Coralee: [taps Ellie's chair] Ellie, honey, you'll never be normal.

WTAF, Coralee!

Are you freaking kidding me right now?

I hate this book. I hate that girls in particular are never able to just BE FRIENDS in media without it being turned into some jealous, catty thing.

Plus Ellie left the table crying, and then got sick :(

On a deeper note, though:

This is why abled / disabled friendships are super rare. It's a cultural difference, yes, but it's also a societal thing. One that people don't like to discuss.

Ableds like to be our friend if they can feel good about themselves for helping us.

Often, though, if we start to gain confidence, they feel threatened and try to tear us down, like we see here with Coralee and Ellie.

(And honestly, I don't care what's going on with Coralee right now, there is no excuse for talking to Ellie like that.)

Whatever's going on with Ellie is freaking me out. She's clearly in the midst of some kind of medical crisis.

I don't like it.

Now that Ellie's in the hospital with freaking pneumonia Mom (and Dad) are "concerned" that "this place isn't meeting her needs."

Are you kidding me right now?

I was telling you that from day ONE.

This whole thing was a freaking plot device and now Ellie is sick and I'm irate.

We must be reminded of "how hard it is to MOVE," I mean, "E knows, of course she knows. But at least with the wheelchair I can get around, if not move around."

OMG can we stop with this?

Mom hasn't brought up going home again, apparently, but that "doesn't mean she's changed her mind."

Ellie lets us know that she hasn't changed hers, either.

(Except Ellie is a literal child here AND TBH she should never have been moved here in the first place. It put her in all KINDS of danger for literally no reason except abled entertainment.)

The Amazing PT / Gym Teacher found Ellie and called the ambulance for her. Apparently, he's also been to visit and left her therabands as a gift.

No thank you.

"All the days in the hospital have eaten away at what little muscle I have. I look down at my legs, skinnier than ever, like scraggly tree branches, and pull harder [with the theraband.]"

That's called CP tone, and it's common! Yes, everyone needs exercise. What we DON'T need?

The massive side of self hate to go along with it.

C's been texting Ellie for days.

Ellie has (understandably) not texted back:

E: It's not that I'm mad...Okay, I AM mad. But she's also right. I'm NOT normal.

OH. MY. GOD.

I can't DEAL with Ellie being made to just LIE DOWN and TAKE being treated like CRAP in this hellaciously inaccessible place where she (somehow, for some unearthly reason) wants to STAY?

Give her an iota of self respect, PLEASE.

And don't let it be in that euphemistic way.

What she needs is authentic connection to her own community. She doesn't have it. And I don't believe she'll find it in this book.

Being grouped together with the one other disabled kid?

Being forced to ride to school together and barely tolerate someone? That's not the same thing as authentic friendship.

Mom (and Grandma and Grandpa) need to connect with the disabled community. They need disabled friends - friends in the CP community --

- and NOT just as founts of information nondisabled adults can use whenever they have a question. Ellie needs community. She needs her ACTUAL people so she won't go around feeling like the way she's being treated right now is the best she can hope for.

"I'm never going to be like everybody else."

("Everybody else" is not abled, believe it or not, Ellie. There's a whole community of people who are JUST LIKE YOU where you won't stick out AT ALL. Who can't wait to embrace you.)

"I will never run the mile in gym."

(That does not make a person normal. I was forced to do this in 4th grade. By myself. In the gym. With my walker. Doing laps. It took me 45 minutes. And in the end, I just wanted to collapse, go home and sleep.)

"I'm never going to walk without the gait trainer."

(So ditch the dang gait trainer, it seems like a giant pain in your butt! If you can get around better and feel safer in your chair, use that. It doesn't make you "less normal" it just makes you safer.)

"I can't even reach the fountain drinks at McDonald's."

(I know it can be brutal to ask for help. You can feel on display and I bet you worry if someone helps you, that someone else might start filming you and post it online as some feel-good moment, but the truth is?...

...Everybody in the world needs help. We just don't make a big deal about the help ableds need because they are automatically accommodated.

Needing help doesn't make you bad, or less, or a failure. It just make you human.)

"I don't need Coralee to remind me."

(Please, please, please don't go back her, Ellie! I beg of you. You're worth more than the way she's treating you.)

Grandma: Thought you might be bored of staring at the wall and giving your mama the silent treatment.

[Quinn Fabray: A fair amount of the pot calling the kettle black...]

Like... Are you freaking KIDDING me? You're going to guilt Ellie right now?

After Mom gave Ellie the silent treatment (to the point where Ellie did not even feel safe asking for help to use the BATHROOM?)

E: God wouldn't want you to give up on me.

"It's a sneaky move, throwing God at her. She's not fooled..."

And again! HERE'S Ellie portrayed as super manipulative....

This is so tiring...

E drops some lemons on the ground accidentally.

Mom sighs and picks them up.

Abled parents, we internalize every single moment like this. You're tired. We get it. The thing is, kids don't pick up nuance, so we often come away with the message you are tired of US.

Mom: YOU are my first priority, Ellie.

(Really? Because it hasn't seemed like that's been true at all, or you wouldn't have taken her to inaccessible trailer land in the first place.)

Also, I resent that E calls it "sweet freedom" just because she can go to the kitchen.

She's been living in a house where she can't GET INTO the bathroom at all for 3 MONTHS at this point.

There is no sweet freedom about that.

"Now [Mom's] crying into my lap like a little kid, which makes me start up, too, because everything makes me cry these days..."

Oh my God, break my heart.

Stop expecting Ellie to be YOUR emotional support, Mom. She's not old enough. She's been through so much crap and has no one in her life that understands what it feels like to be her.

Not to mention she's just been through massive medical trauma and a health scare.

Grandma comes in and talks about how she has to "interrupt this Hallmark moment."

Um, your grandchild has been dealing with untold amounts of ableism, unnecessary access barriers and medical trauma, not to mention being forced to be emotional support for her mom.

THIS IS NOT A HALLMARK MOMENT.

And now Coralee's come over, and she says Grandma told her they have to go out to the porch if they're going to yell.

Ellie has no plans to yell.

But Coralee does.

Wonderful. <-- Sarcasm

Coralee was a jerk, but somehow Ellie's about to be yelled at about it?

C: This might make you madder than you already are...but I'm going to say it anyway. You are not normal. And I wouldn't want you to be. And I would have told you that if you hadn't stormed off.

When faced with a humiliating access barrier away from home - and at an event I paid to attend:

I was told "There's no place for that here. [My wheelchair, which I was in.] The only place for wheelchairs is under the bleachers."

I too got rightfully angry. Tara and I waited by the doors ranting.

My [abled] friend came up to me and said: "Come in, there are seats for us."

I was like, "Hello, no there aren't. They said there's no place for me. They said there weren't seats!"

AF was like: Yes there are, and if you hadn't gotten so pissed off, I could've shown you that there were.

P.S. Disabled people have a right to our anger when we encounter your [abled] access barriers, ableism and / or ignorance.

We don't have to be quiet and good.

We don't have to hang around when getting treated like crap. Ellie did right to leave. And I seriously doubt that Coralee was about to tell her she "wouldn't want E to be normal" esp because she had this whole revelation TODAY and not weeks ago...

E tells C "Bert's not the only one who needs to work on his filter."

C: I know.

And that's the end of that.

(But Bert sharing facts with you and Coralee being intentionally mean is not the same thing. It's a false equivalency.)

E: I've never had a friend close enough to feel like I've let them down. I should have remembered [C's] pageant. That way when she looked out into the crowd...she could have at least seen me.

Wait.

Somehow it's ELLE'S fault now? SHE'S the bad friend?

She was literally unconscious / hospitalized / on oxygen and she was supposed to remember her crappy friend's pageant?

The gaslighting is so real, though...and I don't need it from a book...especially a kids book.

Let's not even MENTION the fact that this freaking pneumonia was engineered from the start, what with E oddly insisting on sitting on the porch w Mom and Grandma w her wet hair back in the day...and then with Mom NOT insisting she stay home from winter mini golf.

I'll be the first to say when Ellie legitimately messes up (because we DO mess up. We're human beings.) But that is not what's happening here.

Also Coralee does not ever actually apologize except to say, "I'm sorry you got sick."

That's not an apology, Coralee.

Coralee pulls a "You're my family," and then Ellie "knows she can't leave her."

So many abusive dynamics, it burns.

This is IN NO WAY A SAFE FRIENDSHIP.

And if these 2 somehow thwart Mom's plan to move back to Nashville..

Bert and Coralee try to state their case for Ellie to stay.

Mom maintains that it's about Ellie's safety and she cites the distance to the closest children's hospital, the fact that E can't ride the bus, and the fact that E doesn't have an aide at school??? (Which Mom OK'd)

...as reasons why it's not safe enough for her to continue to live where she is currently living.

What Mom NEVER mentions?

The access barriers in their own home. The fact that E can't use the bathroom. That she's rolling around without wheelie bars...

...because that's the only way she can get in and out of the trailer.

That E can't actually always rely on Mom to help her because when they disagree? Mom refuses to TALK to her....

PT / Gym Teacher: E's the most motivated student I've ever had.

Mom: Pushing herself too hard is what got E sick in the first place!

OMG NO IT FREAKING ISN'T! STOP WITH ALL THE REWRITING HISTORY SO YOU CAN BLAME ELLIE.

THIS IS NOT HER FAULT.

YOU ARE THE ADULT, MOM.

TAKE CARE OF YOUR CHILD!

And...of course hearing from Amazing PT / Gym Teacher that he'll give Ellie some "gentle" exercises is enough to persuade Mom...

As is, I think, the fact that she's now on a first-name basis with him, and calling him "Jim".

And just like that, Ellie's staying in inaccessible nightmare land which she "loves" because she has people who treat her like crap and blame her for it. People who don't even NOTICE her access barriers, much less address them.

She's going to be so happy here....

...Right?

Real Talk: I feel so hopeless on Ellie's behalf right now. I had hope for .2 seconds that maybe Mom would be a damn parent and take care of Ellie the way she needed to be taken care of.

Or, you know, she could have never moved out here in the first place - but then what would the book be about?

If not to make sure disabled kids stay in their places, if not to exploit them and make it seem like they have agency when all along, they have no power at all.

...Where they are abused and blamed...and still...somehow so happy for the scraps of dignity that the ableds around them allow us to have.

This is not even the end, friends.

19% more to go...

E is back at school now and all the teachers are being overly-solicitous and E is annoyed...

Except Amazing PT / Gym Teacher who "makes me wear ankle weights to try leg lifts. He's printed out all the exercises and made a binder I have to work through. I've never had homework in gym before."

As usual, there are either ZERO expectations for a kid like us or the expectations are ridiculously high. A freaking BINDER of exercises? Are you kidding me?

(I'm having flashbacks of having to independently navigate through like 12-15 different exercises nightly + bike riding + stretching when I was 11...NOT assigned by a gym teacher...but forced to do nonetheless....

Extra fun when it was determined I was not doing them "right" and had to start all over again. <-- Sarcasm. Zero fun was had.

Some reading material on the subject:

toniasays.blogspot.com/2020/07/when-t…

E says one good change stuck:

"People stopped looking OVER me and they look AT me now. It's nice. Easy. I guess getting sick and disappearing for a while turned me visible. Or maybe it was the snowballs. Food is the universal hello."

AGAIN with Ellie's gratefulness for next to NOTHING. For people NOT ignoring her. (Which, I get, trust me. On a soul-deep level...) But there has GOT to be a better way to explore this concept than to postulate that getting sick / baking snowballs "turned her visible."

You've always been worthy of being seen, Ellie.

I wish this book was written in a way that made that more clear and validated you for the person you are - and not the person everyone around you is trying to make you out to be / who you are trying to break yourself to become.

You are you.

And you are enough.

Ellie's feeling TONS of pressure to win her Bake-Off competition bc she feels like it will prove to Mom that they HAVE to stay, "past the summer, into 7th grade, maybe forever."

Your worth is not based on your productivity, love. I wish someone in your life would tell you that.

Grandpa's giving Ellie advice to "bake what speaks to her" and then, on the way out, he calls her by her mom's name.

"He hasn't called me Alice in weeks," Ellie claims, but we've never actually seen a reference to this until now...

No ramp at Bert's house. Not at the front or back door, so Mom has to go up and knock for Ellie. We don't know whether / if Ellie will ever get into the house.

Oh. Bert's out back. At least, Mom offers to push Ellie over all the presumed gravel?

Ellie assures Mom, "Nah, I got it!" and Mom like VANISHES down the drive in two seconds flat.

Like...don't say bye or anything...

"I sometimes forget that without Coralee around, Bert can be a little hard to talk to." - Ellie

You mean emotionally abusive Coralee who is constantly screaming "FILTER" at Bert? Does THAT make it easier to talk to him? Because if so, that's gross and mean.

"I rock back and forth in my chair."

(Again, she does this - this time OUTDOORS - somehow without any trouble at all? AND without wheelie bars I'm STILL terrified she's going to fall.)

HOW is she rocking? I'm asking!

"[Bert] helps me up the ramp to the shed."

This seems SUPER random. For someone / somewhere who doesn't have ramps ANYWHERE else, why would there be a ramp to the shed?

(Unless Bert specifically anticipated Ellie coming by and knew he wanted her to have a way in? But that still wouldn't account for the probable lack of adequate door width to get inside, and actual space in the shed.

But you know...access barriers are apparently here nor there.)

(And Ellie is so SUPER pumped that she gets to stay in the freaking inaccessible gravel filled land where she can't even PEE when she needs to...)

"I had the dream again, the one where I can walk."

(P.S. People always ask me, "In your dreams, can you walk?" so I wrote this: toniasays.blogspot.com/2016/05/lets-t…)

Ellie's dream begins with her getting out of bed, and running down the hall to the bathroom:

"And this is the beauty of it all: I take a shower."

Except Ellie doesn't marvel at how easy it is for her to ACCESS the shower...

She's like: "My legs are strong, like, with actual muscles. My kneecaps don't stick out like knots on a tree."

SO freaking much self-hate. All the more disturbing that it comes from a nondisabled grown author, about a CHILD with CP.

Yes, hello.

We cannot help how our bodies naturally look.

We cannot help that we use up more energy / burn more calories faster / can't use certain parts of our bodies as much as you can, but that doesn't mean you get to write about us hating ourselves.

Ellie hates the dream because "most of the time, the wheelchair just mildly sucks, but after those nights, it sucks big time."

So much hate for the thing that actually gives her freedom of movement. I get the letdown after a dream like that, but jeez...

And again with THE wheelchair. We claim our chairs naturally the way nondisabled people claim their bodies, because our chairs function as an extension of our bodies.

Ellie's been a chair user for most of her life. She would likely do this, too.

Mom: "There you are! I can't believe you slept in here!"

In the kitchen. Ellie fell asleep. In her chair. In the kitchen. That trailer is NOT that big (AND you two share a room AND a bed!) The fact that Mom did not go make sure Ellie GOT to bed last night is neglectful.

Mom asks if E figured anything out re: baking. Says process of elimination might not be the best way to go.

E: If you have a better idea, let me know.

Mom: Don't get sassy with me now.

REALLY? Can Ellie not say ANYTHING without being called sassy or manipulative? Holy crap.

Mom asks if Ellie wants help with a bath. Ellie says no because the dream (where she could shower because of her awesome nondisabled legs) is too real. She's going to lie down instead.

Mom: Well, we have church at 10 and you know your Mema...

So...she can't even rest...

Nice

At church (because of course E has no choice but to go) she does not pray for a cure for her CP...she prays for a cure for Grandpa...and says cr*zy and cr*zier for a good measure... I can't with this dang book...

Mom has "gained some weight from all Mema's cooking" according to Ellie. She "doesn't look so breakable."

Lest we forget that 1) Mom is stressed out and too thin from raising a kid like Ellie and 2) Ellie is super parentified worried about Mom's weight...

Ellie also notices her own thighs are "bigger, stronger maybe" from all the exercises Amazing PT / Gym Teacer has her doing.

(...Remember the giant BINDER of exercises she's expected to work through at home on her own? Yeah, me, too...) :/

"We [Ellie and Coralee] take Bert's phone away, and drag him with us."

No, thank you.

Let him talk to his sibs if he wants to! He didn't give you consent to take his phone OR drag him anywhere!

They're waiting for the pie winner to be announced, when Mom rushes out and grabs Ellie's handlebars and starts pushing her toward the parking lot.

"Grandpa's gone. He took the Buick."

Disabled Person As a Plot Device, anyone? :/

I'm almost willing to overlook Mom grabbing Ellie's chair without consent, until I realize that no Mom would pick her nondisabled 12 year old up bodily and start carrying her to the parking lot in an effort to hurry her along.

For more on the subject (and yes, this even applies to family...)

What You Need to Know About Pushing Someone's Wheelchair Without Permission: toniasays.blogspot.com/2015/09/what-y…

So...Ellie was forcibly taken from church and wheeled away. Only to be taken home and told she's going to have to stay there in case Grandpa calls or comes home...not travel with Grandma and Mom...since E is already in the car.

There are literally 2 full grown adults there. One could drive around and the other could wait at home. (And...by this logic? If Mom is comfortable just LEAVING E at inaccessible-home by herself? She could have just as easily let her stay at church to see if her pie wins...

"She's already out of the van and lowering the lift, so I just nod."

So much of our damn lives we just have no choice over at all - especially as children.

Also, do I have to say that staying at home to wait for Grandpa to call / come home is in no way E's responsibility?

It all feels very plot devicey / one of those not-so-subtle ways ableds quick get rid of anyone who slows them down. The vibe is like, "We can't deal w/ Ellie and her chair AND Grandpa, too. She'll be safe at home."

Except she's not. She gets hurt / sick while her fam is THERE! She'll have no way to use the bathroom...

Ugh this book...

"I'm too scared to say anything else. I'm barely out and on the front walk when they back down the driveway in a cloud of dust."

This... Is like... I have no words. They're not even going to help her in the house? She can't even push herself over the gravel, much less maneuver herself into the trailer without risking a major head injury.

She can't wait for Grandpa to call (a landline) because Mom and Grandma have literally left Ellie stranded in the YARD.

For what?

There's no reason for this.

I hate that her family did this to her.

And, I'm officially horrified because Ellie has noticed a sound coming from the garage. She touches the door. It's hot. She knows a car is inside, running. Grandpa's probably inside.

She calls Mom. Mom doesn't answer. E leaves a message "that is just me crying." :(

Ellie rams the garage door with her chair. Nearly tips over. Burns her palm. Rips skin off her hands but manages finally to pull the garage door open.

Ellie's coughing in the cloud of exhaust. She can't get to the car - or to Grandpa who is "slumped over the wheel like he's fallen asleep."

My dear Lord, hasn't this child been through enough? Does she need to see her Grandpa in this state? And be alone without any help?

Answer: No, she really doesn't.

An adult should have been there (at least WITH her, if not INSTEAD of her.) There is no world in which it makes sense that she should EVER have to face a situation like this by herself.

But we must have our stereotype, mustn't we? The implication that all that PT has paid off and made E stronger so she could get the freaking garage door open. Right?

That makes it all worth it, because she's a "hero" now.

Right?

(The answer is no.)

The last chapter.

Ellie is writing to Julia Child, and by the end of the letter it's clear: She won the Bake-Off. She has the blue ribbon and the $100 grocery store gift card to prove it.

But we didn't get to see her victory. Not even a second of it. The thing she's worked so hard for. This thing Ellie is so passionate about and wanted so badly?

It's an afterthought.

Often, we cannot claim our own accomplishments for one reason or another.

That's true.

It's also true, though, that in this book? Jamie Sumner felt that it was more important for us to see Ellie in unnecessary danger than it was to see her succeed.

To see her not only neglected but traumatized.

Forced to exhaust and over-exert herself.

...Forcing a giant garage door open...

The child with breathing issues...who just survived pneumonia that weakened her whole system had to push past her every limit because she had no other choice.

She had to breathe freaking exhaust fumes because apparently the SuperCr*p trope was not enough. We also "needed" Better Off Dead Than Disabled, with Grandpa driving the Buick into the garage, closing the door and letting it run...

Grandpa somehow survived. In case there's any doubt, hospital staff deem Ellie a "hero" for busting down the garage door. Telling her it could have been "much worse" if she had not gotten it open.

This kind of pressure / statement has devastating effects on disabled kids. I still feel traumatized when thinking of a similar-ish statement made by my family re: a medical emergency.

Ellie lays her head down on Grandpa, where she's "keeping an eye on him" in the hospital while Grandma and Mom talk to doctors.

Grandpa wakes up and urges her to "Stop that crying now."

Because disabled kids never have a right to their valid feelings. Just in case we forgot.

Grandpa says he rushed home to get his item for the auction - a pie shaped mailbox - and then just "got a little confused." Ellie has all sorts of questions, but doesn't ask them. Author mentions Grandpa does some action "like a little kid." :/

Ellie tells Grandpa "they're thinking of making you live somewhere else" and then we hear Grandpa say that he and Grandma have been discussing it, which is honestly, more than I imagined would happen...

He says the assisted living places they've looked at are "nicer than the trailer."

E: I like our trailer.

(Funny - she claims OUR trailer - the place that is nothing but barriers - but her chair - that gives her freedom? It's just THE wheelchair.)

And, finally, Ellie leaves her ribbon (which was dropped off by someone from Bake-Off) with Grandpa so he can see it right when he wakes up...and remember.

(Remember how we can't claim our accomplishments? Yeah, me, too...) :/

They are going to the lake.

"Hutch puts me in my chair."

She's not an object.

("Hutch helps me into my chair?" No?)

Grandpa and Grandma moved into assisted living.

"The trailer is ours now," Ellie says. "Once mom gets her permanent teaching job she promises a full renovation WITH a h*ndicapped shower."

1) The word you're looking for is "accessible" shower.

2) No nondisabled adult would be okay living permanently in a place where they could not access the bathroom. Could not get in to use the toilet. Take a shower or a bath.

I dealt with renovations that did the opposite. Had to contend with getting injured just getting in and out of the bathtub. I lasted less than a month before I moved somewhere more accessible. (Most don't have this option.) And that was WITH being able to access the toilet.

(I've also been promised that basic access / safety would be a thing provided at a house adults in my life insisted that I visit. I was promised around Thanksgiving, 2016. Easter, 2017, more major renovations than I requested appeared to be happening...

(Thanksgiving, 2017? They STILL weren't done. And instead of being invited to an accessible and safe place, I was invited to another unfamiliar / inaccessible home.)

All I needed was some shoveling, railings in place. Carpet runners on the stairs.

Never happened.

So forgive me if I am not holding my breath at Mom's promise for renovations. And I resent the "including an [accessible] shower." Like this is some gift Mom is bestowing on Ellie.

This is basic freaking needs, Mom.

The book ends with Ellie telling us "I am floating" as she drifts along in the lake.

That's it.

It's very abrupt and very weird.

And I'm freaking tired and this book is rude.

I have no earthly idea how this is a book that 5th grade children are required to read.

There are other books...books written by #ActuallyDisabled authors.

Mia Lee is Wheeling Through Middle School by Melissa Shang & Eva Shang (Amazon)

We Belong by me - toniasays.blogspot.com/2020/01/we-bel…

Please realize that when a person from a marginalized group comments on representation ABOUT their own identity - it's not just "one person's opinion."

Listen to what the person in the group that's being represented is saying about that representation. If we are saying it's harmful? Believe us.

We're not just spending time reviewing stuff like this because we want to be jerks. It's because representation like this...

...Where disabled people are abused / neglected and it's justified / never addressed / put across as "normal?" That's putting ACTUAL disabled people at risk of actual harm.

We are already more likely to be abused than nondisabled people...by a lot.

Perpetuating this? (By reading it, assigning it, or dismissing disabled people's warnings about it? That only helps abuse happen again and again.)

Please believe, this is not me overstating. I have lived a lifetime being abused by the very people who were supposed to love me.

It's far too common a situation in our community, and one that many of us have no choice about. We need the help and / or we are stuck without access and / or we are financially dependent on people who harm us.

Thinking critically about what you read is a way you can help.

Understanding that disabled people create our own content - and that it's out there if you do a simple Google search - helps.

So, educate yourselves.

Because we are not just tropes. We are not just inspiration p*rn that exists to make you feel better about yourselves.

We are actual human beings.

We don't deserve dignity / respect / access if we are "good," or if we "work hard," and "overcome our disability."

We will always be disabled.

We deserve dignity / respect / access because we are human and human beings are entitled to basic needs.

Please take the time to read this thread.

Read the articles / books I've linked.

The information's there.

Learn.

Do better.

Lives depend on it.