Monday, April 27, 2020

Books I've Read in 2020: 21-25

617 words
5 minute read

21.


Genre: Fantasy

Disability Representation: Yes (trauma)

Rating: 1/4 Wheels (It was okay)

Excerpt of GoodReads Summary: Yetu holds the memories for her people—water-dwelling descendants of pregnant African slave women thrown overboard by slave owners—who live idyllic lives in the deep. Their past, too traumatic to be remembered regularly, is forgotten by everyone, save one—the historian. This demanding role has been bestowed on Yetu.


What I Thought: Rivers Solomon authored one of my favorite new reads in 2018, An Unkindness of Ghosts, and so I was really excited to check out this book.  It's very different and I found it more difficult to get invested in.  Not a lot of time getting to know the characters, maybe?  It's definitely an intriguing read, and I suspect that once I read it again, I may feel differently.  (It took me a couple of times reading their first book, before it really clicked for me.

22.



Genre: Fiction

Disability Representation: Yes (trauma)

Rating: 4/4 Wheels (LOVE THIS ALWAYS)

Excerpt of GoodReads Summary: 
A young widow raising two boys, Sarah Laden is struggling to keep her family together. But when a shocking revelation rips apart the family of her closest friend, Sarah finds herself welcoming yet another troubled young boy into her already tumultuous life...

What I Thought:  This is a book I've reread once a year for over a decade. (Sometimes, twice!) That's because, in my opinion, this book is the best representation I've yet to read on how it feels to grow up traumatized. I'd recommend this book to anyone whose loved ones have experienced trauma (and caution those of us who have to read with care.)

23.

Genre: Classics

Disability Representation: No.

Rating: 1/4 Wheels (It was okay)

Excerpt of GoodReads Summary: As soon as Anne Shirley arrives at the snug white farmhouse called Green Gables, she is sure she wants to stay forever . . . but will the Cuthberts send her back to to the orphanage? Anne knows she's not what they expected—a skinny girl with fiery red hair and a temper to match. If only she can convince them to let her stay, she'll try very hard not to keep rushing headlong into scrapes and blurting out the first thing that comes to her mind. Anne is not like anyone else, the Cuthberts agree; she is special—a girl with an enormous imagination. This orphan girl dreams of the day when she can call herself Anne of Green Gables.

What I Thought:  I liked reading about Anne, particularly when she was younger.  But Marilla's harshness was hard to take...and the plot just...didn't seem to go anywhere?  I found myself enjoying the book less as it went along, because it felt less and less personal.

24.

Genre: Children's > Picture Books

Disability Representation: No.

Rating: 2/4 Wheels (Liked it!)

Excerpt of GoodReads Summary: Every person matters. Here, national-bestselling and beloved author Nancy Tillman shows readers how each of us fits into life's big picture, and how the world would be incomplete without you in it.

What I Thought: A cute story with really sweet illustrations!  I enjoyed this!

25.

Genre: Disability Fiction

Disability Representation: Yes (Cerebral Palsy and brain injury, mainly)

Rating: 4/4 Wheels (Love it!)

Excerpt of GoodReads Summary: For two sisters with disabilities, being home is anything but safe. While one searches for information on who she is, the other comes face to face with secrets from her past.

What I Thought: Still odd to share my thoughts on my own work, but I make no secret about how much I really like this book, particularly the later parts - and getting to write it with my sister.


***

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We Belong: Chapter 17

285 words
2 minute read

HOW IT FEELS
(Lexie)

When we have to go to therapy another time, Jesse cries.  
“Honey, it will get easier every time, I promise…” Dad says.  Mom is at work.  I think part of it is that he misses Mom a lot.  Dad is home with us all the time.  For a while Mom could stay, but now she has to go back to work.
“You don’t know…” Jesse cries.  “You don’t know how it feels…”
Since Nurse Evan is on days this time, he comes in, and reads Jesse some Harry Potter until he calms down enough to go to therapy.  He does the voices and everything.  It’s funny (but not too funny so our legs don’t shake.)

[Image: A pile of books, including Harry Potter]

“You listen to your coach in baseball, right?” Evan says.  “Because he knows more than you about that.”
“My dad’s my coach,” Jesse says sadly.
“Well, here at the hospital, the physical therapists are like your coaches.  They might tell you to do things that don’t make sense to do because they hurt, but they know that in the long run they’ll make you stronger, okay?”
“But nobody knows how it feels to be us,” Jesse says quietly.  “Nobody grown up knows how hard it is.”
Nurse Evan is quiet now.  There isn’t anything he can say to that.


Return to the Table of Contents


Questions for Discussion:

Nurse Evan helps Jesse calm down by reading him Harry Potter.  Do TV, movies or books help you calm down the most?

Have you ever felt like Jesse?  Like nobody grown up knows how it feels to be you?

***

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Wednesday, April 22, 2020

Crip Camp Reminded Me How Camp Changed My Life as a Disabled Teenager

1,331 words
10 minute read

How old were you when you first felt you truly belonged somewhere?

Maybe this is something you've intrinsically felt.  Maybe you only noticed it when you no longer fit in, due to circumstances beyond your control.

I was thirteen...and it was my first time at summer camp.

***

Watching the Netflix documentary Crip Camp, brought the memories flooding back.  That brief time in my teen years where I finally felt like I fit in somewhere.

When I first arrived, though, I wasn't so sure I belonged there at all.  All of the campers seemed more severely disabled than me.  Add to this, that my sister was not attending camp with me, and I just didn't feel ready.

I was more focused on the counselors, who were all visibly nondisabled.  All older.  Some were local.  Some were from other places: Holland, Australia, New Zealand, Russia.  I wanted all of the counselors to like me.  And I wanted to be just like them when I grew up.

Having never been around this many disabled kids before, I didn't feel I fit in with them and naturally gravitated more toward the counselors, wanting to impress them.

I remember looking around early on and feeling like I would never fit in here.  This would never work.  I'd never belong.

But...I wasn't lonely for long.

***

I made friends with a girl slightly younger than me.  She was sure of herself and engaging.  And we quickly set out to spend every moment together.

We ate meals together.  I was stunned to see so many campers who needed all different types of assistance.  I was young and grew up steeped in ableism from every direction.  So, my primary feeling was relief.  I felt lucky that my CP was not more severe.  That I didn't need more help.

Every cabin made a cabin cheer and we sang the cabin cheer every day at lunch.  Our cabin cheer compared our cabin too a beehive.  (It's no surprise we didn't win.)  Every day had a new theme.  I wasn't fond of dinner-for-breakfast, where we all had barbecue chicken sandwiches...

My new best friend and I were joined at the hip.  We went everywhere together, doing the same activities (enjoying early internet access and the library, where we found the book Old Turtle, and read it together.  We cracked up whenever "Old Turtle smiled," and I loved that my BFF had a knack for smiling just like Old Turtle...

[The last day of my second summer.  I was 14 years old, arm in arm with my best friend.]


She also had a knack for quoting long sections of letters I received from family members - including their errors - we particularly loved it when she read my great grandma's letter, which memorably opened, "Well, hell!" instead of, "Well, hello!"  She explained words I'd never heard before (like "venting") and taught me all the words to Garth Brooks's The River.

We did activities like camping outdoors in a tent, horseback riding and swimming.  But I enjoyed nothing more than just spending time with my friend.

Over the years, our circle widened.  My best friend invited her best friend, who we nicknamed the town crier because she always knew the time and announced it.  And over time, we welcomed a fourth girl, who was both gorgeous and sweet.  She was endlessly patient as we tried to help with the letter she dictated.

We asked questions to get the ball rolling: "Do you have pets?"

"Patches.  She's a cat."

So, one of us included the phrase: How is Patches?

We were gently corrected: "She died."

Her letter then read: How is Patches, the dead cat?

We loved each other.  We helped each other.  When one of our chairs broke down, we enlisted each other's help and direction to pound on it with a hairbrush.  When one of our fab four ended up with her legs hanging precariously out of bed in the middle of the night, and no counselor could hear her naturally soft voice, I got up and helped her back to bed and safety.

On the last night, my last year at camp, I stayed up very late talking to my best friend.  We talked for hours.  Me, sitting on her bed in the dark.  We didn't want the week to end, but knew it would.

I didn't know it would be my final year there.  That three weeks of belonging (from ages 13 to 15 years old) was all I would ever find, until adulthood.

My camp friends and I loved each other...and kept in touch for years, by letter.

***

The other reason camp was memorable for me?  

The counselors.  

I loved them so much.  

When I think of them, the word access comes to me simultaneously.  The cabins floors were bare, aisles wide enough for wheelchairs.  The counselors slept at least four to a cabin in a curtained off section in the center. So they were always available for the inevitable call of, "Counselor!" that came in the middle of the night.

But the women themselves made such an impression on me.  Because they took time.  They wanted to get to know us.  They encouraged my burgeoning writing talent and read my half-started stories in notebooks I had lugged from home.

When we needed something, they helped us cheerfully, celebrating milestones of the campers, and never making us feel ashamed for things we could not help.  We had dances as a camp and private dance parties, where one counselor did The Worm at our request and even tasted one campers snack: cheese balls, which the counselor decided were "foul-tasting."  But even this was lighthearted.  They enjoyed us, and we felt enjoyed.

Camp was one of the first places in my life where I did not feel like a burden to adults around me.  Where I felt seen, and valued and validated for all of who I was.  I didn't have to hide any part of myself.

Throughout my summers there, I knew campers regularly came up against bouts of homesickness.  At least once, each of my weeks at camp, someone would be crying, missing their parents.  Wanting to go home.

Our counselors were gentle forces in our lives.  I still recall hearing a cabinmate in tears and then, hearing one of our counselors softly singing TLC's Creep as a comfort.  As a teenager, I only heard a song about loneliness being lovingly sung to a camper who was clearly feeling sad.

***

And then there was the night a counselor caught me in silent tears on my bed.  I stared out the window of the cabin.  My friends were out somewhere.  I was alone and my guard was down.

I was thinking of home, but not for the reasons people thought.

A counselor noticed.  She asked if I missed home.  I insisted I didn't.  (And I didn't.)  But I could not stop my tears.

This counselor memorably joined me on the bed, staring longingly out the window, her chin in her hand and mused:

"You're thinking...about a boy..."

I cracked up at the absurdity.

I was unused to people noticing my upset.  Tending to my sadness.  Even trying to talk to me about it.  And while it didn't take away my worries, it did break the tension momentarily.  She got me involved in something - or found my friends - I don't remember which.

But I felt better.

At camp, I always felt better.

Because at camp, I always fit.

***

Watching Crip Camp brought back that feeling for me.

It gave the feeling words.

Because now I know...that finding camp as a disabled teenager felt like finding my family for the very first time.  Getting to enjoy them and spend time with them for a week.  And then being forced back to facing the world alone.

It was the very first time I had people.

The very first time I belonged.

***

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Monday, April 20, 2020

We Belong: Chapter 16

137 words
1 minute read

SO MANY CHANGES
(Lexie)

One of the days, we have to get our hair washed.  Jesse is dressed today, in sweats.  I’m not, and I don’t even care I’m not matching him.  We go in a room with a giant sink and a nurse (not Annette) washes my hair, so I can still stay in my wheelchair.  

Well, this one isn’t really mine. It’s the hospital’s.  I miss the Batmobile.  This one is too big and brown.  It doesn’t talk to me like the Batmobile does.  Brown isn’t a good color, either.  Not bright and shiny like yellow.

[Image: The silhouette of a hospital wheelchair]



Return to the Table of Contents


Question for Discussion:

Do you ever miss your adaptive equipment like Lexie misses her Batmobile?


***

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Monday, April 13, 2020

We Belong: Chapter 15

297 words
2 minute read

THERAPY OR PLAYING?
(Lexie)

Even when Annette suggests we go play in the playroom, I’m not so sure if it’s therapy or playing.  It doesn’t feel like playing because we can’t reach any toys.  I want to play video games, but we have to share them there and a bigger boy with a huge cast on, from his waist to his toes, playing right now. 

Our casts only go up to our knees.  Dad signed mine: To my favorite daughter, Lexie.  Love, Dad.  He always says that and I tell him “I’m your only daughter!”  This time, I just smiled and went to sleep.  Mom signed Seth’s name on my left big toe.  That was funny.  She signed my other cast with lots of different colored markers and drew a butterfly to add color.  That's because right now, our casts are plain white.  Boring city.

Jesse and I mostly just look at each other in the playroom.  I think we both wish we could go back to sleep.  Everything makes me feel tired and I have zero energy left ever.  The only thing I can do is watch one episode of Seth’s favorite TV show, and those only last 15 minutes.  Even looking at all their tropical fish here makes me want to take a nap.  I wonder if I’ll ever have the energy to play again.

[Image: A yellow tropical fish in an aquarium, facing the glass]



Questions for Discussion:

Have you ever felt confused like Lexie, wondering if something was therapy or playing?

Lexie's mom drew on her cast and signed Seth's name on her big toe.  Have you had a cast?  Who signed it your favorite way?

***

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Tuesday, April 7, 2020

Books I've Read in 2020: 16-20

476 words
4 minute read

16.

Genre: Disability Fiction

Disability Representation: Yes (chronic / terminal lung disease and PTSD)

Rating: 4/4 Wheels

Summary:  History is a tricky thing. Siblings Pearl and Levi West had entirely different childhoods. Levi knew their father, while Pearl was left by him as a small child. Who was Paris West, the man? Find out his story - and all the ways history echoes in the present.

What I Thought: I know it's weird to share my thoughts on my own work, but I really love this story.  And since (at the time of this writing) I'm gearing up to write the next story in the series, I needed to reread this to be caught up.  And it fills something in me, to give a history to characters when so much of my own is a blank.  (You can read the story at the link above.)

17. 

Genre: Children's

Disability Representation: No.

Rating: 2/4 Wheels

Excerpt of GoodReads Summary:  
Dorrie has a great time at the Bazaar until her mother disappears, and it turns out that the prankster Wink the Wizard is to blame.

What I Thought: This was an unexpected joy to hear (read by Kirsten Vangsness and interpreted by Josh Castille for #OperationASLStorytime.)  Definitely not a book I'd have ever checked out, but fun and quirky.  I keep thinking about the witch being transformed into the last thing she looked at, and that Dorrie kept looking for mother, and kept fearing that she got turned into tea and "drank herself."

18. 

Genre: Children's

Disability Representation: No.

Rating: 3/4 Wheels

Excerpt of GoodReads Summary: Both spirited and soothing, this bedtime read-aloud story is the perfect preface for a trip to dreamland.

What I Thought: This was a random find for the inner children and it was so sweet and soothing.  I enjoyed it so much.

19. 

Genre: Children's > Picture Books

Disability Representation: No.

Rating: 4/4 Wheels

Excerpt of GoodReads Summary:  
An entertaining picture book that teaches the importance of asking for permission first as a young girl attempts to escape the curious hands that want to touch her hair.

What I Thought:
 Found this book via Karen Quinones reading it for #OperationASLStorytime. It's so engaging and really drives home how important consent is.  Great book!

20.  

Genre: Children's > Picture Books

Disability Representation: No.

Rating: 4/4 Wheels

Excerpt of GoodReads Summary:  Max, a wild and naughty boy, is sent to bed without his supper by his exhausted mother. In his room, he imagines sailing far away to a land of Wild Things. Instead of eating him, the Wild Things make Max their king.

What I Thought:
 Found this book via Shoshannah Stern reading it for #OperationASLStorytime.  This one always takes me right back to being read to by my first grade teacher.  Classic.  Love it.


***

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Monday, April 6, 2020

We Belong: Chapter 14

527 words
4 minute read

NOTHING TO FIX
(Lexie)

Here is what is confusing about having surgery when you have CP:

Everything.

A kid in my class in third grade broke his leg on a snowmobile ride.  He came to school in a cast.  That’s the first time I learned that most people have surgery because they get hurt.  They break a bone and need surgery to fix it and make it better again so they can do all the things they did before.

But Jesse and I were fine before.  None of our bones were broken.  Nothing had to be fixed.  In our case, the surgeons do the hurting, in hopes that when we heal, we’ll be able to have an easier time walking later on.  I had an easy time walking already, so I don’t get why I needed surgery in the first place.

I’m glad I am not at school this time.  Sometimes, the kids in my class thought I was going to be able to walk like them after surgery.  Mostly, I just came back with new scars I didn’t have before.

After only a little time resting after surgery, the nurses take us down for therapy.  I hate this part.  Mom encourages me to have a good attitude, but it is really hard.

The room where you get therapy has mats and big balls and parallel bars.  Nobody else is in there except Jesse and me and the therapists.

They make us lie down on mats, first on our backs.  They move our legs a very little bit, and it hurts more than anything so far.

When we flip onto our tummies, the therapist gives me a baby toy to play with.  I don’t even care she’s treating me like a baby.  I play with that toy, because anything that distracts me is a good thing.

[Image: A stuffed toy butterfly baby toy]

When I have to stand up for the very first time, I feel like I am so dizzy I’m going to fall over.  I hang onto the parallel bars tight but I have no strength left, it seems like.  I’m skinnier than usual, and all my body shakes from trying so hard.

Up until now, I kind of thought Jesse was making a big deal out of this.  He’s cried a few times and says it hurts a lot.  One of his legs got most of the surgery.  His other one just got a little bit.  Both of mine got a lot, but mine don’t hurt that much.  My medicine in the I.V. must’ve been super strength.  When we get back to the room, I am too exhausted to eat.

I fall asleep wishing I could hold Jesse’s hand.




Questions for Discussion:

Mom tells Lexie and Jesse to have a good attitude when they are getting therapy.  What would you tell Jesse and Lexie?

Lexie does not mind being given a baby toy because it distracts her from how much therapy hurts.  Do you think Lexie minds being treated like baby other times?  Why or why not?


***

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