Thread by @TaraJean

#RollWithIt by Jamie Sumner: A Disabled Perspective

(I'm moving this over from GoodReads as there have been access issues.)

Right off the bat, we have the author of Wonder singing the book's praises, as well as a mildly condescending dedication of the book to kids with disabilities... Oh my...

Chapter 1 is called Symmetry. I'm side-eyeing. We don't know the MC's name before we know that she loves the Great British Bakeoff and that her mom micromanages the chewing of her food, even during a phone call. (There's no indication that MC needs this level of support.)

Okay, this MC is super parentified. Offering all kinds of emotional support to her mom. We learn the MC is in a wheelchair. Finally, on page 6, we learn that she is a 12-year-old named Ellie.

Ellie has a lot of understandable feelings about her aide at school. She is full of sarcasm and repressed rage at access barriers.

She's also sorry that she let being stuck in a wheelchair get to her today. :/

This book is going to be exhausting.

Ellie encourages her mom to "chew, chew, chew" her dinner. I enjoy her level of pettiness.

Apparently, Ellie only has one friend at school. Who also has CP. (Which implies that Ellie herself also has CP. They're not close friends.

Ellie describes herself as sitting "like a doorstop" away from her classmates in the cafeteria. The level of ableism burns my eyes.

WE ARE IN CHAPTER 1, AND THE FIRST C-WORD HAS BEEN DROPPED. I CANNOT.

If you're a nondisabled author, THIS IS NOT YOUR LANE. Do not think that you can use offensive slurs because you have a disabled character.

Trust that the majority of disabled people are not as self-hating as you might assume.

We do not refer to ourselves - even in our heads - casually as "the c-word kid."

WHEN HER ESTRANGED FATHER VISITS, ELLIE MAKES A POINT TO "LEAN OVER AND DROOL A LITTLE."

I'm furious.

Ellie's own name is actually an adaptation since she could not pronounce Lily as a child, and it stuck.

New neurologist declares her seizure-free. Mom calls it a miracle. Ellie thinks of evangelical healing where a disabled person stands up and walks. Later, she digs through the medicine cabinet and disposes of her own anti-seizure meds.

Chapter 2: Ellie has gotten bad news. She is depicted as doing laps around the living room in her wheelchair as a coping mechanism. For a half hour.

Just for those of us who aren't chair users - and this author is not - wheeling on a carpeted surface is NOT comparable to walking on the same surface. It takes considerably more effort and strain.

This is perhaps one of the most glaring indications of a nondisabled author writing a chair user.

Disability culture means that, by and large, we do not show our anxiety by "pacing" in any way, shape or form.

Get yourself a sensitivity reader, please.

Apparently, according to Ellie, wheelchair design is either "My Little Pony" or industrial transfer airport chair... Um...? No, it isn't? And she would know this, as a chair user......?

Ellie completes a transfer by herself, not wanting to bug her mom. My heart.

Parentified child vibe is real. Ellie hands her mother the orange she'd been peeling for herself and starts peeling another. Someone needs to take care of Ellie, please. Specifically, her emotional needs.

Mom has just brought up the prospect of moving to help care for Ellie's ailing grandfather. Ellie, thinking about the new school, fantasizes about not talking because "no one would know the difference." Because, you know, faking disability has to also be a thing...

"Cerebral palsy is like the Go To Jail card in Monopoly."

Excuse me???

Even the reference of graduating from feeding therapy reads like a nondisabled perspective - dribbling and choking and overcoming...

Mom doesn't know how equipped the new school is to "handle" Ellie. When Ellie pushes back regarding the wording, Mom doubles down and says that her job is to protect Ellie. :/ (Also, Ellie may or may not be intentionally ramming her chair into the wall?)

TWO CHAPTERS IN, TWO MENTIONS OF THE C-WORD. I CANNOT.

I PROMISE YOU, WE DO NOT THINK OF OURSELVES LIKE THIS ON A USUAL BASIS, AND AS A NONDISABLED AUTHOR, IT IS NOT YOUR PLACE TO USE THIS PARTICULAR SLUR.

Also, Ellie's full of uncertainty regarding moving and starting a new school, but she pushes her emotional needs aside because her mom is so tired. My heart.

Chapter 3: Ellie is emailing her estranged father. She gives him a status update on her wheelchair as well as herself in a way that rings false...

Unnecessary quip about how Ellie is such a good sitter smacks of nondisabled perspective. Just why? Also, sitting in a wheelchair is much different than sitting in a car during a roadtrip, so the comparison is just weird and uncomfortable.

"WATER IS THE ONLY PLACE MY BODY IS NOT THE ENEMY...I CAN FLOAT FREE."

^It's this kind of BS that gets trotted out to justify filicide. Inappropriate.

Finally, a bit of positive mobility representation: Mom drops sauce on her pants in the car, and Ellie (with her wheelchair tray) says she forgets that others are not as well-equipped.

"Fixing a tire is not the same as fixing a person," Ellie thinks about her ailing grandfather. Um? No thank you?

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

Bodies. BODIES? Do Grandpa and Mema live in a cemetery?

Also, bodies are not things? This whole passage just blew my mind. I've reread it 3 times, and I still cannot comprehend it...

Chapter 4 is called Trailer Living. Ellie is already inside the trailer. Previous chapter indicated a gravel lot, which does not mix with wheelchairs.

Something so frustrating about disability in media is the idea of the disabled character magically BEING in an inaccessible place, without even a nod to how they got there.

Ellie denies help with a transfer from her mom because her mom is not taking Ellie's parentified advice. This family...

Ellie is pleased that Mema has moved some bowls to lower cabinets for accessibility. "She's gotten ready for me."

When Grandpa enters the room - having gotten out of the hospital after a car accident - Ellie comments that her mom "looks like the cr*zy one" standing next to him. Because Grandpa has dementia / Alzheimer's. :/

Mom took off Ellie's stabilizers (wheelie bars) - presumably to help combat access barriers. Sounds like a great way to get a concussion.

No ramp at the back of the trailer, but maybe at the front? Unclear.

Winter in Oklahoma. Ellie is wearing a dress that does not cover her knees to the Christmas Eve service. I'm not talking modesty - I'm talking temperature regulation for someone with CP! Get the child a blanket please!

Church: Standing and sitting makes Ellie feel awkward, just sitting.

Church ladies speak to her in a baby voice. Ah yes, the joys of being disabled in public.

"I whip my chair around. It skids on the front walk." ????

Ellie meets another child while waiting outside in the freezing cold in her dress for her mother to pull up with the van. Child confirmed Ellie's name before asking about her chair, and that's enough for Ellie to want to accept the child's invite to her trailer.

(Not even a hint of a thought about access issues...)

Ellie deals with pitying parishioners at church - where there is a ramp.

She later discusses how "regal" her mom and grandma look in their Christmas finery, but laments that she herself must "drag down our average with my racing stripes." :/

(There IS something to be said about having 1 wheelchair for all occasions that is only covered by insurance every several years, but this is not the moment for it. The author is nondisabled, and the idea of Ellie's chair dragging down the family's regal-ness is just gross...)

Grandpa gets confused at church while Mom and Mema are distracted. Ellie tries to draw her mother's attention to the situation, but her mother dismisses her. And the situation escalates dramatically and weirdly until the church podium is on fire, and Grandpa's crying.

I love a good Disability As A Plot Point trope. :/ Oh wait. No, I don't.

Chapter 5: The bathroom in the trailer is inaccessible. Ellie's chair can't even fit through the doorway, so her mother assists her with personal care. Ellie is mortified.

I can see this being a grit-your-teeth-and-bear-it situation for a visit, but Ellie and her mom are planning to stay for 6+ months. How awful. I have no words.

Can you imagine being dependent on another human every time you had to use the restroom? Because of the width of a doorway? Infuriating. This is not something Ellie's mom would consider tenable for herself if the situation was reversed - why is it okay for her 12-year-old child?

My God, and now with the dehumanizing descriptions of how exactly Ellie's mom assists with personal care regarding bathing in the inaccessible bathroom???? Ellie equates herself to "a baby" for needing this level of care.

"Handicapped shower" - shall we try "accessible shower?" Handicapped is a super outdated term...

"It's a tiny thing no one else thinks about, the privilege to wash yourself without help."

So, there's no shame in needing help with personal care needs, first of all. However, it's just infuriating when the need for that care stems from a lack of access which stems from a lack of money.

"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 ALL A LITTLE LESS EMBARRASSING WHEN PEOPLE ARE ALWAYS PUTTING THEIR HANDS ON YOU."

What. The. Actual. F-ck.

1. This is dehumanizing.
2. It, again, lends to that type of "othering" that justifies filicide.
3. This level of mind-body dissociation is unheard of to me, and I've needed personal care like this before. >

4. This level of mind-body dissociation is wildly concerning for a child of 12 to have. >

5. It speaks to the lack of autonomy Ellie feels as well as the lack of consent that is implicit in this interaction. If her body is an object, a task to complete, then no consent is needed. Super problematic.

"YOU'D THINK MY LEGS WOULD NEVER GET SORE, SEEING HOW LITTLE I USE THEM, BUT THEY DO."

Ableism! Come on! Overuse is ONE cause of soreness. Disability / chronic pain is another. :/

Ellie floats in the tub in her bath chair, fantasizing about how free the water makes her feel, implying that she is trapped by being unable to walk.

^Harmful representation to justify filicide #3

Ellie joins her Mom and Mema on the porch after her bath. It's still winter in Oklahoma. Ellie can see her breath and feel her hair get crunchy. Mom tells her not to, but Ellie is determined.

Once again, the author's lack of understanding about the finer points of CP are glaringly obvious. Cold weather impacts spasticity, making it harder to move. And temperature regulation is a huge thing for many / most of us.

In disability culture, we generally won't choose to sit out in the freezing cold to have a conversation.

I could imagine Ellie lingering in the house by the door or cracking a window to eavesdrop, but since she is so parentified and the author is so nondisabled, she's on the porch. In the cold. With wet hair.

Also worth noting, Mom and Mema both have cups of coffee. Ellie does not.

At the conclusion of the conversation, both adults help Ellie back into her chair - as she'd transferred to the couch - because she is "so stiff from the cold. But it was worth it."

^Ellie harms herself to be present for an adult conversation, and since she's super parentified, her adults let her. Okay, then.

Ellie is on the phone with her estranged dad: "I wonder if Dad ever misses me. I wonder if he ever wonders what I can do now."

^Nondisabled parents are MUCH more focused on milestones than disabled children, just an FYI. This smacks of a nondisabled perspective.

"I can't remember the last time a friend asked me over."

^The implication that Ellie has no friends is just odd. She's spunky and interesting. In my experience, kids do at least ask.

Ellie's going over to the neighbor's house when she suddenly remembers - the street is gravel. This is where her grandparents live. She's likely been here multiple times. It's not likely to have slipped her mind that the road is gravel. We remember access barriers.

^There's that nondisabled perspective again.

Susie, in the neighboring trailer, smokes. Ellie reasons she'll be okay for a few hours, even though smoke is bad for her lungs. While not unreasonable for a 12-year-old to think, it's frustrating to see our disabled MC in harm's way yet again. It feels plot device-y.

Andddd Ellie's new friend has asked The Question, "What happened?" Ellie obliges and discloses her medical history - for the first time in the book - saying she has Cerebral Palsy. Disclosure is so normalized, it's sort of maddening.

"I DON'T HAVE MY OWN ROOM. OR MY OWN BED. I CAN'T TAKE A BATH OR USE THE BATHROOM ALONE. I HAVE NO IDEA WHAT MY NEW SCHOOL WILL BE LIKE...[BUT] I'VE GOT PEOPLE NOW."

Excuse me now? Sacrificing her own basic needs in order to have "people?" And this is painted as a feel-good aspect? I can't with this book...

Chapter 6: About fishing with Grandpa- "I was his favorite fishing buddy because I'd had my whole life to practice sitting still." Really? REALLY? These quips are so awkward. I can't.

Oh great, SuperMom is here to register Ellie at school. Ellie calls it her mom's "Advocate Mode" and goes on to list all the ways that her mom fights the system, the ableism, the access barriers. (Ellie's mom is amazing for this, in case you didn't know.)

Only 2 accessible parking spots (taken up by cars without placards), but Mom chooses not to fight this battle. She has fought insurance companies and for IEP accommodations. "Fighting teachers who thought CP was the same thing as a learning disability."

(CP and learning disabilities can and do co-exist!)

No accessible door button - this does not look good.

Also, "Mom's face says, We are the ABILITY in disABILITY. Hear us roar."

Wow. I have no words again.

New school is small. The staff has never done an IEP before, but they're doing one for Ellie. (Great - it's the law.)

Ellie won't be able to access the school bus, so she's reliant on her mom to drive her. :/

Grandpa mistakenly thinks a random little girl is Ellie. He's proud and excited that their granddaughter has finally learned to walk. Ellie starts to cry. How heartbreaking.

As Chapter 6 is called Appointments, Ellie has accompanied her family on numerous appointments and errands. By late afternoon, "I can tell I've been in my chair too long. My legs ache and I can feel the seat rubbing a bruise into my tailbone."

^Holy cow, Ellie's chair is not fitted properly. Also, there's the issue with the bottom of the chair being called a "seat" and not a cushion... IS there a cushion? The child needs one.

A (gelfoam) wheelchair cushion is a medical necessity. 8-9 hours in a chair should not cause bruising.

"Ever since I got my first pink wheelchair at four and began to notice all the things I could and couldn't reach, Food & Co. has been my favorite place. It's like a [c-word] kid's dream."

C-Word Count: 3. Less than halfway through this horrid book. This kind of casual ableism just gets to me, specifically because the author is nondisabled. And this author apparently has no qualms about having her 12-year-old disabled MC use ableist hate speech.

And this book is marketed for children. And to see the c-word normalized by a disabled protagonist? That drives home the message that that word is okay. And that's so incredibly irresponsible and harmful.

"...HOMEMADE SAUSAGE BISCUITS STAY WARM ALL DAY IN THEIR PLASTIC WRAP UNDER THE HEAT LAMPS."

Um. NO. No food is safe under a heat lamp all day! That's a breeding ground for bacteria. Don't eat the biscuits, Ellie! 🙃

Ellie didn't listen to me. She's eating a sausage biscuit. And she's thinking a bunch of rude things about this (likely) neurodivergent person who just struck up a conversation with her.

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

Okay, wow. What an untrue and mean message for all the children in wheelchairs who read this book. 😐

WOW - Ellie told Mom about her encounter with the person in the grocery store (Bert), and Mom is literally LAUGHING OUT LOUD. At the mere mention of him. At the idea that he will be carpooling with them, due to bullying on the school bus.

Ellie thinks he is "on the spectrum," but she's still creeped out by him. 😐 She also says she never got bullied on the short bus because those kids were "in it together" and had to "save our strength for the school day."

Apparently, Ellie feels no such camaraderie for Bert...

"I can see how Mom is trying to place Band-Aids over all the broken people. It's what she does."

^In case we forgot, Mom is both SuperParent AND Nondisabled Savior...

(Driving Bert to school is to make up for Grandpa driving his car through the front of Food & Co. which is owned by Bert's dad. Mom's trying to smooth things over. So, let's do a nice thing for the bullied neurodivergent child.) 🙄

Mom finally calls Ellie out on using "cr*zy" as a descriptor for Grandpa and Bert. She is "not ever" to call Grandpa cr*zy, and she "needs to be more open-minded" about Bert. (So, is it okay to call Bert cr*zy but not Grandpa?)

Mom goes on that Ellie needs to have more empathy and sympathy for others, but Ellie - still feeling the effects of Grandpa's unintentional ableism with the little girl at the hospital - is not feeling giving.

"I think about what it means to be attractive and how I will never be. Empathy and sympathy. I'm just fresh out."

^Ellie's perception of herself is tied to not seeing herself represented in the world.

However, when a nondisabled author pens these thoughts of a disabled child protagonist without fully exploring them or refuting them? Then, it just becomes one more place that disabled people (children) hear ableist crap about themselves. And that's problematic.

Chapter 7: Ah yes, we start this chapter with the phrase, "My skinny, st*pid, useless legs."

And I'll just refer whoever's reading this to the tweet above. There's no need for this self-hate of a disabled MC from a nondisabled author.

You're not doing it right, Jamie Sumner. Because you should not be doing it at all - at least not without a team of disabled sensitivity readers!

Ellie's upset due to problems at her new school. Mema's solution is to go out to the porch. In January. When Ellie says no and protests about the cold, Mema responds, "You're a tough girl. You can handle it." Way to dismiss her and ignore her boundaries, Mema.

Ellie thinks that she's not tough - that she's "an invalid. In-valid." She goes on, explaining why she can't tell Mema how she feels, "There are certain statements Mema refuses to hear."

This kind of attitude from a disabled child's adults is so unintentionally harmful. By shutting down their authentic communication about their experiences, these adults too have essentially proven themselves as unworthy protectors of the child.

Ellie and Mema end up on the porch, this time with blankets and hot chocolate - accommodations at least, even if there remains no respect for boundaries.

"Handicapped van" --> accessible van

Ellie's recounting the school day. She and her friend, Coralee, greet Bert as he gets in the van by bullying him about his satchel. Ellie thinks, "He would have been right at home on the short bus."

Are you kidding me right now? I hate this book.

At school, Mom informs Ellie that they have not secured an aide for her yet, but that Mrs. So-And-So from the front office will do for now.

Not just any-old-body can do any old job within the school. Come on now. I'm smelling a trope already...

Ellie tries to tell her mom that she does not need an aide. Her mom ignores her. Again.

You can't just ignore her every time she has an opinion you don't like / agree with, Mom. (I mean, you can. But it's a jerk move.)

Coralee is all patronizing in her goodbye to Ellie, even straightening her backpack "like Mom did," and calling her "honey-baby-child."

Coralee. No.

Also, the Not-Aide has begun her stint by placing her hand ON ELLIE'S WHEEL without consent.

Here comes Disability As A Plot Point, everybody...

Not-Aide's appearance was brief. She's retiring to the front office. Ellie heads into her homeroom class to find the room, the aisles - everything - is too narrow for her to navigate through in her chair.

YOU LITERALLY KNEW YOU'D HAVE A STUDENT IN A WHEELCHAIR. COME ON NOW.

Even the use of "blank spot" is odd. As in "The teachers usually leave a blank spot open for me," instead of "The teachers assign me a space big enough to accommodate my wheelchair." 🤔

We are with Ellie as she tries to unsuccessfully navigate the perimeter of the room, encountering backpacks and rugs as obstacles. No one helps her. Finally, Bert calls out to her and kicks backpacks out of the way to clear a path. Ellie seems embarrassed by this.

Too late to help, the teacher arrives. She belatedly attempts rearranging the classroom. Ellie is mortified - "...I want to disappear. But that's one thing you can't do in a wheelchair."

🙄🙄🙄

"Bert...is completely unaware of everything else going on in the room. For one second I wish I could be like him."

^Ohhhhh no! We are not doing this ableist nonsense. Not from a 12-year-old, and certainly not from an adult author who needs to know better and do better.

Ellie's next few classes are filled with ableist microaggressions by the teachers, as well as the need for each classroom's desks to be rearranged.

Ellie is doing #PeeMath and has not had anything to drink all morning, in an attempt to not need the Not-Aide's help in the restroom. Luckily, she spots Coralee, who guards the door for her, while Ellie does her thing.

^So true to life. So wrong.

#PeeMath can also be needed due to inaccessibility and inadequate time to use the restroom, among other reasons. It's a real thing.

Bert tries to contribute to the conversation at lunch. Coralee: "Bert, we need to work on your filter."

Coralee, we need to work on your manners and respect for others.

Not-Aide pops in to check on Ellie briefly during lunch, and the whole roomful of kids turns to stare. One girl notices Ellie's squeeze pouch of applesauce and laughs.

Ellie shoves her lunch back in her bag.

So, she hasn't been drinking, and now she's not eating. WTF.

Coralee GRABS ELLIE'S LUNCHBAG AND STARTS SETTING HER FOOD OUT AGAIN! Excuse you? She tries to reassure Ellie that it's not ableism, it's classism. Because that's so much better.

Bert tries to contribute again, but Coralee dismisses him and calls him "a bit off. No offense." WTH.

Bert responds: "A bit off what? The average? If so, I'll take it as a compliment."

I love this kid. 💙

Before gym class, Not-Aide tries to help Ellie change! No thank you! Coralee chases her away - yay nondisabled privilege! Just too bad that it's needed.

If only the school had the particulars of the IEP settled...

The gym teacher actually has alternate stretches ready for Ellie to do while the others warm up. He hands her a Theraband seamlessly. Something good. Finally.

BUT then, it's ruined. Because in this book, we can't have even the barest amount of common decency: "I'VE BEEN SLACK ABOUT MY EXERCISES SINCE WE MOVED."

Okay, we're doing THIS now? This tired and ridiculous notion that disabled kids are l*zy? NOPE. Stop right there.

1. Where is she supposed to do her PT? She's living on top of 4 other people in a trailer?
2. A different living space can take awhile to adapt to and figure out what works, motor-planning-wise. >

3. I'm sure Ellie has been stressed and distracted with the major life change of the move, her grandfather's health, managing her mother's emotions etc.

There are about a million reasons she let the PT go recently. To write it off as "slacking" is just maddening.

"Slacking" and "l*ziness" is the go-to "explanation" for noncompliance among disabled people. But it's really not an explanation at all. I censor the L word because I believe it is ableist. It takes away all of the legitimate reasons people have for noncompliance.

Turns out, the gym teacher studied PT. He tells Ellie: "I'm glad you're here...it lets me practice my skills." Because OBVIOUSLY Ellie is just an object for you to manipulate and practice skills on, and not someone you might be glad is here to learn...

Ellie joins the class when they run laps. She references a movie about the Paralympics and talks about how cool the athletes' chairs are.

Then, Coralee JUMPS ON ELLIE'S LAP DURING THE LAST LAP! Boundaries, Coralee! Respect the chair, and the person in the chair!

During dismissal, Ellie, Coralee and Bert have to wait until most of the other kids board the buses. The other kids ignore Ellie, Coralee and Bert. This cuts deepest for Ellie.

At the conclusion of Ellie's recounting, Mema proclaims, "Well, that's not SO bad." Well, thank you for nothing, Mema. Way to dismiss Ellie's feelings and experiences yet again... 🙃

Ellie's depressed at the idea of going back to school tomorrow. She's so exhausted by the day and the ableism, "I can't even move to get myself back in my chair."

Oof. These days are brutal, and they're made worse by well-meaning but dismissive comments.

One good thing: Mema agrees that Not-Aide has got to go. So, we'll see what happens. Ellie's still scared to go back to school, and I don't blame her. 💔

Chapter 8: Mom has declared it - no more aide for Ellie at school!

Coralee is being frustratingly patronizing to Ellie again - it's gross. Ellie takes it silently, almost as if it is a character quirk of her friend.

Ellie and Grandpa share a moment and some challah in the kitchen. "It's stuff like this that makes me glad we're here, even if Mom has to drive me to school and carry me into the bath..."

^Yes, yes, all the indignities and inaccessibilities are worth it. You don't deserve even the basics, because you're so tragic and disabled and parentified, you don't blink at sacrificing your dignity and safety for others. (Sarcasm)

Also, notice how often Jamie Sumner brings up the details of Ellie's bathing. How often have we gotten details of the other characters in this book being without clothing and vulnerable...? Oh right, WE HAVEN'T.

Because bathing is a basic human need, and not an excuse for exploitation.

There's a basketball game at school. Coralee is insisting that Ellie attend, "whether you want to or not."

Ellie does not want to go, because she'll "sit in [her] chair at the end of the stands like a grandma."

1. Coralee needs more help learning respect of others.

2. Jamie Sumner understands that Ellie has been a chair user for basically her whole life, right? I'm just curious, because it seems like Ellie is extremely preoccupied with sticking out because of it...

Ellie is at Coralee's trying to STRETCH HER TOES. (How, though? The gym teacher / PT has told her about this particular pain management trick. Ellie thinks he's the best PT she's ever had. Which is awesome. She SHOULD have a good PT.

BUT AGAIN, since we can't have good things...

"...But I'm not telling Mom or she'll stop feeling sorry for me." (Ellie lists getting to sleep 10 extra minutes and an extra half-hour of screen time as the pity perks she's not ready to lose.)

Seriously. These books written by nondisabled parents all paint their disabled child MCs as so manipulative! Why would Ellie be worried (after 8 years of chair use) about sticking out at a basketball game, and not about her own mother pitying her?

Why would a mention of, "Hey, my gym teacher's really helping me manage my pain with the stretches he's prescribing," automatically translate to "Well, you can say goodbye to your extra sleep AND your extra screen time - you only get those when you're in severe pain!"

It's so messed up... 😐

Ellie declining to go to the game causes Coralee to say, "Nope." [throws a stuffed toy at Ellie] "You do NOT get to pull the [c-word] card..."

59% in. 4 c-words.

The hate is so normalized. I can't.

Coralee wants Ellie there to watch her sing the national anthem at the game. She wants Ellie there, regardless of the personal cost. Regardless of her personal choice.

^Disabled People As Props. (It's an ableist trope. Look it up.)

BUT Coralee called Ellie her best friend. And Ellie has never, ever had one. (Honestly WHY is she so ostracized? Was it all because of the aide at her previous school? Even disabled kids have best friends!) Ellie is so delighted by the term that she agrees to go.

This section has felt inauthentic to me. In my experience, as kids, we're LESS worried about sticking out (again, this is our normal) and MORE concerned with being included in a social context.

Wanting a best friend feels real, but the conversation rings false due to the misunderstanding of cultural subtleties.

Ellie says that she's going "bring Bert." (Bert is not a backpack or a purse - perhaps you could ask him if he'd like to join you?) She thinks he's lonely.

Coralee: "Robots don't get lonely."

I can't stand this book.

Before the game, Coralee has asked that Ellie take pictures of her while she's singing. Ellie forgets until the end of the song and takes her phone out. Bert GRABS IT FROM HER AND BEGINS TO TAKE PICTURES WITH IT.

(Except that consent is still a thing, Bert. And grabbing someone's personal property is rude. So, don't do that.)

THEN, Coralee approaches them after she's finished performing. She asks, "Did you get my pictures?"

Bert HANDS CORALEE ELLIE'S PHONE.

"That's the last I see of it for the rest of the night." 😲😲😲

Does Ellie not even care or notice that she is being used? Usually, we have a pretty keen sense for this type of thing... Clearly, that was all Coralee wanted from Ellie - which, then, why wouldn't you just ASK her upfront rather than being secretive?

The end of Chapter 8 reads: "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."

There is so much to unpack here. First, I don't know if it's a Southern thing, or the fact that I've grown up disabled too, but it was not uncommon at all for me to not be spoken to outside of the group I was with? I'm not sure why Ellie is so focused on this.

Secondly, I can't with Ellie being so overly grateful for having three people. Because she clearly has her mom and her grandparents. That's three right there. It just feels like one more way for the author to remind us that we need to pity Ellie...

That she SHOULD be so grateful to have people. That it is extra work to love her. And that she is comfortable begging for scraps of human decency. That that should be enough and she shouldn't expect more.

Pity is so harmful, and being conditioned to expect the bare minimum (or even less) of basic human decency PRIMES us as a community to be susceptible to abuse. This should not be read as a heartwarming chapter, folks.

Chapter 9: Ellie has to give a demonstration speech, but she's out of ideas. She mentions doing wheelies in "the chair" as one option. So awkward. You don't throw a ball with "the arm..."

Looks like Mom is looking into assisted living facilities for Grandpa on the downlow. Not cool...

Ellie jostles her cup of hot tea, and it "sloshes over on my legs."

That's the only reference about it. No mention of pain or crying out. Dehumanizing Ellie yet again. And her mother doesn't even notice or care that she scalded herself. 🙃 WTAF.

This book is so dangerous.

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

You...DO realize that you're sitting in a chair...that has WHEELS on it, right? And hypothetically, you COULD use said chair to quickly exit the room? No? Why? Because the author's nondisabled. Got it. 🙄

Ellie's understandably upset about the idea of sending Grandpa away: "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."

I would use caution at randomly tipping your chair backward without your stabilizers on, especially if you're used to having them, first of all.

Second of all, what even? I don't even know where to start with this mess.

1. It's a wheelchair. Not a horse. That's just weird.
2. Wheelchair users - particularly those who've used a chair long term - don't just...try to find some way to match a nondisabled way of expressing an emotion. They have their own movement vocabulary. >

And if it's not for some performance art piece, they're not likely to move like this. (Chair users, correct me if I'm wrong.)
3. Ellie is not likely to rank her (apparently) natural movement as lesser than a nondisabled movement. We're seeing the author's ableism again. 🥸

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

Anddd sh*t just got real. I'm positive that Ellie's mom will quickly reassure her daughter, and the book will move on.

The thing is, though? Disabled people live under the constant threat of this, particularly if we are noncompliant (read: not "easy" to take care of). Nondisabled parents threaten their disabled kids with this, particularly once we're of age.

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

^Such a deep-seated and authentic fear among disabled people. Many of us end up estranged from our families and / or institutionalized due to the truth of this statement.

(CW: implied institutionalization) Sh*t. Now, Ellie's sharing about Rita. A girl at her old school who had more severe CP. She lived at a disabled children's home. Dehumanizing list of symptoms and how Rita was kept separate at school. And then, one day, she was gone.

And no one told them where she'd gone.

...

BRB - in my trauma.

Holy f-ck. This is a children's book. That disabled children can and will read. ARE YOU TRYING TO SCAR THEM ALL FOR LIFE, JAMIE SUMNER? ARE YOU?

(CW: emotional abuse; neglect) Mom gives Ellie the silent treatment and (implied) does not help Ellie in the bathroom before bed. She wakes up in the middle of the night, needing to use the bathroom.

(CWs same as ^) "[I] stayed awake and held it until my stomach cramped. I wasn't about to ask for help. I tried praying to keep my mind off it...for me to get strong enough to walk better so I won't need help from anybody ever."

😲😲😲

Again, a very real issue within the disabled community. We're much more likely to be abused or neglected, specifically as "punishment" if we're noncompliant in some way.

It's not unrealistic that this is included, even with a child as young as 12. However, without the sensitivity and insight that a disabled author might bring to the subject, this just comes off as something we feel sorry that Ellie has to bear - or we blame HER for it.

Because her mom was RIGHT THERE. Why wouldn't she just ask her for help? As readers, we don't receive answers to those questions. Because this is thrown into the story as a disability issue without nuance and proper understanding.

And, because we're reading a disabled MC penned by a nondisabled author, Ellie doesn't yearn for her old bathroom or a mom who isn't abusive. She wants to not need help ever from anybody. And if the onus is on Ellie, then society does not have to address systemic ableism / abuse.

OH, and we never know if Ellie actually makes it to the bathroom. The matter is just dropped. Of course... 🙄

Bert has come over with a bouquet of flowers. Ellie infers that he intends to ask her to the Valentine's dance: "Do you know how many bad movies there are where the poor little [c-word] girl goes to the dance? No way..."

She goes on: "I am NOT sitting in a corner while everybody drinks Hawaiian Punch and takes selfies and tries to dance like Beyonce."

I've almost lost track of the c-word count at this point. I think we're up to 5. And we're 64% in.

To be clear, choosing not to go to the dance is her choice. And she's not wrong about the media representation. But she could literally DO everything she lists here, instead of sitting in a corner! Drink! Take selfies! Adapt those dance moves!

The ableism in this book is stunning.

Coralee uses the word l*me. NOPE.

Turns out, Coralee, Bert and Mema are all up to something - and it is not going to the dance. Ellie makes fun of Bert's satchel again, and then agrees to go (after having her "no" disregarded at least 3 times) with them - destination unknown.

Ellie apparently has to dress for the occasion, which is an outdoor festivity of some sort. Mom - who has not "said more than two words" to Ellie since last night 😫😲 - worries that it's only 25 degrees. She suggests they do something at home instead.

Mom tries to get Ellie to wear her long underwear, but she refuses. Ellie doesn't think her mom knows that she is not a baby.

Mom drives Ellie, Coralee and Bert to the surprise location. Bert holds out his hand to shake Mom's as he thanks her, "but she ignores him." WTF. I hate this book. HE IS A PERSON. WHY ARE YOU SUCH AN ASS, MOM?

Bert tries to contribute to the conversation, and Coralee barks, "Filter!" at him. Later, Ellie pokes him in the back with her club. Oh my God.

Ellie enjoys mini-golf and Dairy Queen. Mom doesn't help Ellie out of the van right away, instead she takes a moment to check in with her daughter.

Ellie is essentially a captive audience. She cannot exit the van without her mom's assistance.

So, she's stuck listening to her mom asking after her.

^This is a jerk move. Don't do it.

At least ASK if Ellie would mind if they talked before they go inside!

"I'm sorry about last night," Mom says. She does not address the fact that Ellie asked if her mom would institutionalize her. Mom attempts to smooth things over by reassuring Ellie, "Grandpa's not going anywhere for a long, long time." NOPE. NOT reassuring.

Chapter 10 Speeches and Ambulances: Oh dear.

Ellie gave her demonstration speech at school. It was about cookies. And everyone likes cookies, so the speech was a hit. Now, at lunch, she does not seem to be feeling well. Also, she's super excited that the whole class had to pay attention to her.

"They looked at me, and it wasn't to laugh or check out my chair."

^Weird nondisabled perspective again. It was a speech. Surely, in her 12 years, Ellie has given speeches before? Generally, kids HAVE TO pay attention during speeches.

Then, Coralee says, "Well, don't get used to it."

😐😐😐 Here's an idea. Why don't you try being the slightest bit supportive rather than emotionally abusive? It's not okay.

Ellie: "Why can't you just let me be normal?"

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

Ellie cries and then gets sick on the floor.

These comments are honestly a dime a dozen when you grow up disabled, so this ableism is realistic. However, if Coralee's comment is not addressed properly, then this exchange adds to the heap of harmful representation already in this book.

Turns out, Ellie has pneumonia and she's hospitalized. Naturally, she's unhappy about it. Once she's well enough for conversation, Mom says, "Honey, this [town] just isn't as equipped to meet your needs."

It took a hospitalization to see that?

Not the fact that Ellie has not had access to a bathroom for over a month (at least)?

Chapter 11: Ellie is back home recovering: "...At least with my chair, I can GET around if not MOVE around, if you know what I mean."

I don't actually, because the whole sentiment is so awkward and nondisabled. What does this even mean?

Longtime chair users generally view their chairs as extensions of themselves - they can both get around AND move around in them.

Apparently, Ellie's gym teacher brought her Therabands. Because who wouldn't want to exert themselves extra after a health crisis?

For those who don't know, and in case I haven't mentioned it here, people with CP use 3-5x more energy to perform tasks.

Why someone would bring this child exercise equipment during her recovery from a severe illness is beyond me. PT should not be a concern right now. If she needs gentle stretching, let a trusted person do the movement.

"All those days in the hospital ate away at what little muscle I had. I look down at my legs, skinnier than ever, like scraggly tree branches, and pull harder [on the band]."

Holy sh*t. I'm actually sickened by this whole plotline. That Ellie would be so ashamed of her body that she throws herself into potentially dangerous exercises should not be normalized or painted as trying to Overcome Disability For A Happy Ending.

Because the Overcoming Disability narrative? That's harmful as h*ll too...

https://twitter.com/TaraJean/status/1075109065238437888

It seems that Coralee has been harassing Ellie via text. Ellie has not responded: "I AM mad [at her], but she's also right. I'm NOT normal."

FFS. WE ARE NOT DOING THIS.

HOW MANY TIMES DO I NEED TO REPEAT MYSELF?

THIS SH*T IS HARMFUL WHEN IT IS PERPETUATED BY A NONDISABLED AUTHOR WHO DOES NOT UNDERSTAND THE NUANCES OF BORN-DISABLED EXPERIENCE.

I am 99.9999% sure that this plotline will resolve by Ellie achieving nondisabled or Super Disabled Person status by performing productivity.

WHICH IS MORE OVERCOMING DISABILITY NONSENSE. WHICH IS HARMFUL.

We'll see if I'm wrong...

"I'm never going to be like everybody else. I'm never going to run the mile in gym." (WHY are nondisableds so fixated on running? It's not a thing we generally pine for - in fact, it sounds awful. I loathed running.)

CP means spasticity. Spasticity is velocity-dependent. Meaning that IT KICKS IN WITH SPEED. So, every time you want us to hurry up, or run a lap or a mile, our spasticity is activated. Which actually slows us down.

Anyway, continuing on with Ellie's list of sadness: "I'm never going to walk without the gait trainer. I can't even reach the fountain drinks at McDonald's."

Again, when you're disabled from birth, you're not generally super fixated on walking, unless you're immersed in cure culture or Overcoming Disability.

And Ellie, I'm so sorry you can't reach the fountain drinks. McDonald's needs to comply with the ADA.

(It's not you, it's them.)

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

Ellie's legitimate feelings are dismissed and minimized once again... 🙄 Also, the implication that resting when your body needs it is l*ziness. 😐

Mom is attempting to talk to Ellie. Some lemons roll off Ellie's lap. "Mom sighs and picks them up."

^This is a microaggression. Providing access for a disabled person is a basic human right. Sighing implies that our basic rights / needs are extra. Too much.

Keep your ableism to yourself. Or better yet, unlearn it.

Mom says that Ellie is her first priority (even though she clearly hasn't been), and then word-vomits all her grown-up feelings all over Ellie about her hospitalization and cries into her lap. 😬

Coralee has come over, apparently to yell at Ellie - yay, more abuse 🙄 - but Mema says they have to do it on the porch.

Coralee: "Ellie, you are not normal, BUT I wouldn't want you to be for all the tea in China. And I would have TOLD you that if you hadn't stormed off, or if you had answered any of my texts."

So, let me get this straight. You're going to continue to abuse Ellie...and then BLAME her for having boundaries after your previous abuse? You've got a lot to learn, Coralee. And Ellie does not exist to educate you, so do some Googling.

And then, Ellie absolves her by saying that she knows she's not normal. (WTF.) Coralee shares about her pageant, and somehow ELLIE feels guilty for not attending.

(Pssst. Ellie, it's your parentification trauma. You did nothing wrong. It's good to have boundaries when friends treat you poorly.)

It's worth noting that Coralee apologizes for nothing except Ellie getting sick AND doubles down on her ableism, while Ellie is the one who is painted as guilty. A bad friend. In the wrong.

Because we're just supposed to take this sh*t.

Coralee then pulls the proverbial Ace out of her sleeve. "You're my family," she proclaims - her hand nonconsensually resting on Ellie's chair.

And you know if the best friend thing hooked our poor, formerly friendless, disabled MC before, calling her family seals it.

Ellie, Coralee and Bert put their heads together to come up with a plan to keep Ellie in Oklahoma. It's a PowerPoint presentation for her mom. When Mom rebuts about Ellie's safety, she still does not list the inaccessible bathroom as one of her concerns. 😐

Mom claims that Ellie pushing herself too hard got her sick. But people get pneumonia from cold, dry air...and...it was winter. Yes, she's more susceptible to lung infections, but blaming her for it is abusive.

Mid-presentation, Mema and Grandpa pile on as well, and Mom gives in.

Ellie gets to stay 3 more months in access h*ll with her abusive friend.

Chapter 12: Ellie's back at school post-pneumonia, and the teachers are being accommodating. Ellie says this is annoying.

Her gym teacher, on the other hand, has taken things to the next level. He's upping the level of difficulty on Ellie's PT. He also printed out all of the exercises and put them into a binder, so she can do PT at home as well. 😐

I can only assume this is meant to be heartening. Ellie seems both awed and pleased by the development.

We see here the author's intense focus on Ellie making physical gains. While a child is in school, her focus should be on academics, not on a demanding PT regimen that she does at home as well as at school.

I swear to you, if this child amazingly stands up from her wheelchair or takes a few unassisted steps at the end of this book, I will not be held accountable for my actions.

"People have stopped looking OVER me and look AT me now. It's nice. Easy. I guess getting sick and disappearing for a while finally turned me visible. Or maybe it was the snowball [cookies]."

^Ellie is grateful once again for the bare minimum. She (and so many disabled people like her) are so much more likely to be abused due to this overgrateful-for-basics mentality. Not that abuse is anyone's fault but the abuser's, just to be clear.

Ellie hopes that by winning the baking competition at her church, she will prove to her mother that they have to stay in Oklahoma "maybe forever." She claims she is "more herself and happier" than she was in Tennessee.

Grandpa has a conversation with Ellie in the kitchen, and he calls her by her mom's name. She claims he hasn't done this "in weeks." Grandpa's Alzheimer's is a plot device. I haven't spoken about it much in this review, as it isn't my lane.

I'll just say that it's annoying to see Grandpa trotted out just to have some new symptom every so often to advance Ellie's story in some way.

Chapter 13: Ellie goes over to Bert's trailer, where there's no ramp access. Conveniently, he is in the backyard.

Ellie declines her mother's offer to push her - again, grass / dirt is difficult to push through - never mind that it's an unfamiliar backyard, and place blindness is a thing. These are nuances we cannot expect to be portrayed in this book.

Self-reliant = good. Needing help with anything ever = bad.

Her mom just left her there, in a place she's never visited. Before she actually meets up with Bert. Just left her outside in a yard, knowing she has no access to the inside of the trailer! I'm just flummoxed.

Ellie finally sees Bert. "I rock a little in my chair." Again, Ellie is on grass. Idly rocking her chair would not be as easy as this sounds...

Conveniently, there is a ramp to the SHED where Bert is working, so Ellie is presumably able to go inside, assuming the doorway width is amenable.

This feels so nondisabled to me, the random inclusion of a ramp or exclusion of one, based on plot.

Bert has made an intricate miniature model of their town. He confides to Ellie that some kids at school bullied him about and somehow destroyed a good chunk of the model. Ellie's furious.

(She also, somehow, seamlessly BACKS DOWN the ramp that Bert had pushed her up? Have we forgotten that Ellie does not have stabilizers on her chair? Are we aiming for a concussion? No, just an oversight from an author who does not use a wheelchair.)

Chapter 14: "I had that dream again, the one where I can walk."

In the dream, Ellie seamlessly takes a shower. (This IS possible for some with a disability, with the right accommodations. And, you know, assuming they can get into their bathrooms.)

"I look down and my legs are strong, like with actual muscles, and my kneecaps don't stick out like knots on a tree."

I've done 86% of this godforsaken book, and I have had just about all of the self-hate that I can take.

"...Most times the wheelchair just mildly sucks."

Wow, we get mobility aid hate on top of self-hate. How lucky are we? (Sarcasm)

Again, ELLIE HAS BEEN IN A CHAIR HER WHOLE LIFE. IT IS HER NORMAL. IT AFFORDS HER FREEDOM. WHY IS THAT SO HARD TO GRASP?

Nondisableds grow up steeped in systemic and personal ableism that is completely normalized. To them, becoming disabled is a tragedy. (And there IS a difference between being born with a disability and acquiring one, but bear with me.)

But for those of us who are born disabled, we do not know any different. Being disabled is part of our identity (for most of us), like our sexual orientation. It is not a tragedy to us. (Again, unless we are immersed in cure culture, access barriers and rampant ableism.)

Ellie declines her mom's help with a bath because "the dream is still too real." 🙃

Ellie goes to church and prays for Grandpa's healing from Alzheimer's. She thinks it's driving him "cr*zy. Or cr*zier. And I don't mean that in a mean way."

Well, in that case, please feel free to drop more sanist language in here! (Sarcasm)

Chapter 15: Ellie's at the church fish fry / baking competition. She's eating with her family while also admiring her mother's looks. "I'm in jean shorts today, and I squeeze my thighs a little. They're bigger, stronger from all the exercises [my gym teacher] has me doing."

Because we disabled people can only feel good about our bodies when a nondisabled person HELPS US to meet a nondisabled beauty standard. (Sarcasm)

It also must be said that overuse and overexertion at a young age can wreak havoc on a body with CP as we age. So, exercise is not the perfect Band-Aid that this book implies. Often, it's a delicate balancing act trying to figure out movement that does not worsen symptoms.

Ellie and Coralee TAKE BERT'S PHONE AWAY AND DRAG HIM OFF TO PLAY HORSESHOES.

Um. No.

And of course, Grandpa has taken the car and left the fish fry. Mom is frantic. And instead of letting Ellie stay at the church with her friends, Mom nonconsensually GRABS ELLIE'S CHAIR AND STARTS RUNNING THEM TO THE PARKING LOT.

Mom does not explain why she has done this until they're in the parking lot.

WOULD YOU PICK UP YOUR OWN NONDISABLED 12-YEAR-OLD CHILD AND MOVE THEM SUDDENLY AND WITHOUT CONSENT? Unless THE CHILD was in immediate danger, I'm going to say no. This is basic human respect - that does not change because a child is disabled or in a wheelchair.

Ellie, Mom and Mema get home, and the car is not there. Mom tells Ellie to stay home in case Grandpa returns. (She asks her, but she does so AS SHE'S LOWERING THE VAN LIFT.)

(I continue to hate Grandpa's disability being used as a plot point here. It's used to excuse Mom essentially kidnapping Ellie away from the church - and thus, away from the baking competition.)

And honestly, why does ELLIE have to stay home? Mom and Mema could just as easily have split the duties of staying home and driving around. This is just annoying now.

THEY LEAVE WITH ELLIE STILL ON THE FRONT WALK. SO RUDE.

Ellie tips her chair back - stabilizer-less - to look at the sky. While on a cement path. 🙃

Head. Injury. Risk. Come on now.

(CW: Suicide Attempt - carbon monoxide poisoning)

F-ck.

(CW: Same as above) I'm shaking with rage.

Grandpa's in the garage with the car running.

Because we haven't had enough dangerous tropes in this godawful book, let's add Better Dead Than Disabled.

I hate everything.

(CW: same as above) Of course, the plot has been manipulated in such a way that 12-year-old Ellie needs to somehow attempt to save her grandfather. And be scarred for life. Because there's no way this doesn't traumatize her, even if she succeeds.

(CW: same as above) Ellie struggles to raise the garage door while sobbing and somehow manages - all those PT hours, you know. She gets inside, but can't maneuver her chair between the car and the wall. She can see her grandfather unmoving and slumped over the steering wheel.

Chapter 16: Ellie wins the baking competition off-page. It's referenced in a letter to Julia Childs. She's not allowed to just be a child. She has to be (or attempt to be) Super Disabled and perform beyond her strength and beyond her years to be a worthy protagonist.

Here's the rub. To be disabled in media representation right now, you either have to be 1) cured 2) Super Disabled 3) teaching a nondisabled person a lesson or 4) dead.

And in this book, we have 2 and 4 existing (or nearly existing) simultaneously.

And CHILDREN are supposed to read this. Children will read this. DISABLED CHILDREN WILL READ THIS.

So, Grandpa's not dead - he's hospitalized and conscious. The paramedics called Ellie a hero for her actions. Ellie leaves her first place ribbon taped to the foot of Grandpa's bed. Because even her accomplishments belong to someone else.

Oh, and Grandpa tells Ellie that, essentially, he'd like to be institutionalized. (Somehow, the fact that he just attempted suicide sort of puts a damper on his enthusiasm...)

The book ends with Ellie, Mom, the gym teacher (who Mom's dating), Coralee and Bert at the lake. Thankfully, Ellie has proper floatation devices on, and she enjoys swimming.

It is revealed that Grandpa and Mema now live happily in assisted living. AND ELLIE AND HER MOM HAVE THE TRAILER. Mom "promises a full renovation WITH a handicapped shower," once she's settled into her full-time teaching job.

I guess, according to this book, what's another few months or year of no bathroom access, when the PROMISE of access is on the horizon like a dream that you might one day reach.... 😐

The book ends with Ellie, pleased as punch, floating idyllically in the lake.

I need to go wash my brain now. And contend with the panic attack and trauma symptoms that this hideous book brought on.

In case it's not clear? This book is horrible disability representation, and it is NOT fit for children to read.

When looking for good disability representation, look at #OwnVoices media first and foremost. It IS out there.