Thursday, February 27, 2020

Books Read in 2020: Part II


Genre: Science Fiction > Dystopia

Disability Representation: Yes (but it's hideous)

Rating: 0/4 (Never again)

Excerpt of GoodReads Summary:  Twelve-year-old Jonas lives in a seemingly ideal world. Not until he is given his life assignment as the Receiver does he begin to understand the dark secrets behind this fragile community.

What I Thought:  I cannot with this book.  I'd never read it before and reading it for the first time now as an adult.  

As a twin, it traumatized me.  I don't say that lightly.  

I can't believe someone thought: "Hey, here's a great idea!  I'll write a book about killing all the weak and disabled and leave the responsibility for saving the whole community with a literal child."  And then?  People apparently read it?  And called it a 'classic?'  And had more literal children read it?  Hell.  NO.  TW: filicide.


Genre: Children's > Picture Books

Disability Representation:  No, but still so good for disabled kids!

Rating: 4/4 Wheels (Perfect!)

Excerpt of GoodReads Summary:  Love isn’t just for the cute, the sweet, and the cuddly. Whether you’re awkward as a baby ostrich, prickly as a tiny hedgehog, or drool like a puppy pug, someone loves you no matter what! This new story from the team that created Next To You features an irresistible array of adorably stinky, grouchy, burpy, and warty animals to drive the point home.

What I Thought:  This was so sweet!  The most affirming and lovely book!  Every kid (and adult) can benefit from the message of unconditional love.


Genre: Young Adult

Disability Representation:  HIV (not Own Voices - in terms of disability representation - as far as I know, but the author did have sensitivity readers and it showed!)

Rating: 3/4 Wheels (Really liked it!)

Excerpt of GoodReads Summary:  Simone Garcia-Hampton is starting over at a new school, and this time things will be different. She's making real friends, making a name for herself as student director of Rent, and making a play for Miles, the guy who makes her melt every time he walks into a room. The last thing she wants is for word to get out that she's HIV-positive, because last time . . . well, last time things got ugly.

What I Thought:  I really liked this book!  It was clear that the author had sensitivity readers and that definitely influenced the trajectory of the story in a good way.  

I'd heard from some that this book had "too much sex" so I was braced for that - as an asexual who often wonders how people can have it that much and why???  But on a serious note, this is the first book that clearly spelled out the reason for that, and I really appreciated it.  I felt like I learned something new.  (Not just about sex...come on now.)  OH!  THERE'S ALSO AN ACTUAL ASEXUAL CHARACTER IN THE BOOK, TOO!

Loved how fully articulated Simone was as a character.  I loved and related to her love of musicals (and RENT!  Yay!)

My single caveat was that Simone was in the position where she felt she had to educate ignorant people in the end, but I loved how she did it.  Great read.  Definitely recommend!


Genre: Memoir

Disability Representation:  Trauma

Rating: 4/4 Wheels (Loved it!)

Excerpt of GoodReads Summary:  She was known to the world as Emily Doe when she stunned millions with a letter. Brock Turner had been sentenced to just six months in county jail after he was found sexually assaulting her on Stanford’s campus. Her victim impact statement was posted on BuzzFeed, where it instantly went viral–viewed by eleven million people within four days, it was translated globally and read on the floor of Congress; it inspired changes in California law and the recall of the judge in the case. Thousands wrote to say that she had given them the courage to share their own experiences of assault for the first time.

What I Thought:  I read this book for the first time last September and I've already reread it a second time this year.  I still love it just as much - if not more than the first time I read it.  I love how Chanel is just herself, unapologetic, authentic.  I cannot say enough about how much I love this book and recommend it so highly.


Genre: Memoir

Disability Representation:  Trauma

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Somewhere Inside is the electrifying, never-before-told story of Laura Ling’s capture by the North Koreans in March 2009, and the efforts of her sister, journalist Lisa Ling, to secure Laura’s release by former President Bill Clinton. This riveting true account of the first ever trial of an American citizen in North Korea’s highest court carries readers deep inside the world’s most secretive nation while it poignantly explores the powerful, inspiring bonds of sisterly love.

What I Thought:  I read this book for the first time in 2014 and had a very hard time understanding the politics and what was happening.  Rereading it now, I found myself grasping more of what was happening (due to the current political climate.)  I really loved reading Laura's perspective in particular and the glimpses of how trauma and silence impacted her.  Lisa's point of view was more difficult to relate to for me.

Related:  Books I've Read in 2020 Part I37 Books I Read in 2019 / 30 Books I Read in 2018 


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Tuesday, February 25, 2020

Poem: Places, Everyone

For the crumbs.

Settle for
The nothing-sums
We deign
To give
As if
That is

For the scraps.

Settle for
The zero craps
We give you
When we toss
You -
And what little
Is left
At you -
Under the table.
Our feet.

For abuse.

Settle for
The chains we loose
When we decide
To love you
Or accuse you -
It's really up to us -
To lose you - to confuse you
Or to leave you...
Always looking up.

For excuses.

Settle for
The lie our truth is
When we look back
On the past
At the dying embers
You remember.

How dare you tell it?

The sins you claim
We did.
The ones
That burned your skin.

For I am entitled
To every charred
Every crumb, scrap, damn
Piece of it -

        of you -

Whatever, right?

Same difference.

[Image: A knife on a cutting board, covered in crumbs]

Originally written on my personal blog: 
July 10, 2018


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Monday, February 24, 2020

We Belong: Chapter 8


The pizza is plain cheese and it’s the best I ever had.  We have some dessert pizza, too, because Jesse and I asked if we could.

After, we go for a family bike ride, because it will be a while before Jesse and I can do that again.  We ride in a line, Dad first, then Jesse, then Seth, then me, and last Mom.  They like to have all of us between them so they can know where all of us are.

We’re not allowed to ride our bikes without helmets.  My bike is pink and my helmet is, too.  It has little yellow hearts on it.  Jesse’s bike is black and his helmet is black, too, with a fire design.  Seth has a green helmet and a green bike.  He says it’s because when he grows up he is turning into The Hulk.  He’s so weird.

We ride far, all together, and before we go home, we stop at the park.  Jesse and I want to play, but I realize my walker and my crutches are at home.  I can’t play.  Sitting still on the bike will be hard and I hope I won’t fall.

Just then, Mom comes and helps me down.  She takes my hand and walks with me.  “What should we do first?” she asks, going my speed, so I can keep up.

“Swings?” I say.  It’s hard to talk and walk at the same time.  My legs think they have to help me talk, and the muscles get all tight.  I wonder if they won’t do that after tomorrow.

[Image: Two empty swings at a park]

We get there, and Mom helps me on one swing.  Jesse gets on the one next to it.  Dad puts Seth in the baby swing, even though he’s almost too big for it.  Mom pushes me, and Dad goes back and forth between Seth and Jesse.  (Jesse can push himself, and so can I, but it’s nice to feel your parents behind you sometimes.)

“When Grandpa pushes, he sings to us…” Jesse says into the wind.

“We should have brought Grandpa…” Mom says behind me.

But Dad starts singing Christmas carols loud enough for the whole playground to hear.  I’m glad we’re the only ones here right now.  Dad does Frosty the Snowman, and Rudolph the Red Nosed Reindeer, and ends with Jolly Old St. Nicholas.

"It's summer, Dad!" Jesse protests, laughing.

"Yeah!  Summer, Dad!" Seth echoes.

"Yeah!  This is no time for Christmas songs," I joke, giggling, too.

Dad just keeps right on singing.  It's his favorite way to make us happy.

I sing along.  I love to sing.  It’s one of my favorite things.  Jesse, Mom and Seth do, too.

Then, it’s time to go back.

Questions for Discussion:

Lexie's mom helps her play at the park when she doesn't have her crutches.  Have you ever helped someone else when they needed it?  (There are lots of ways to help other people.)

Singing is Lexie and Jesse's dad's favorite way to make them happy.  What is your favorite way to make people happy?


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Saturday, February 22, 2020

Dear 15-Year-Old Me

If you've been around a while, you might remember I wrote a Letter to My 12-Year-Old Self once upon a time.

Well, me and my 15-year-old self need to have some words tonight.  Words of love and compassion.  Help and hope.  

Maybe you need this, too.  If so, read on...

[Image: Me, smiling, standing with my crutches.  Age 15]

Dear 15-Year-Old Me,

You didn't know at the time this picture was taken that you wouldn't be smiling like that much longer, did you?

You had no idea that a mere three months later, you would stand beside your youngest brother, in his high chair, but you would not be smiling because he was cutely messy with cake.

You know why now.

But you didn't then.

It was a Saturday night then, too.  On this night so many years ago.  We were eating dinner one second.  And the next...  

I need to tell you something vital.  (And your siblings, too, if they read this.)

What happened is not your fault.  

It was not on us to keep it together, to keep calm, to keep steady.  We were children.  No matter what started it?  Trust that we were children being children.  Trust that adults around us were meant to keep us safe, help us regulate, discuss options that felt fair to us.

It was not on me to try to appeal to them to handle things better.  It was not my responsibility to write a note and risk walking back into a powder keg situation because that's how desperate I was to change things.  It was not on me to set the example for the adults around me.

I was a child.

We all were.

I know you'll spend months living in fear that someone will find out.  I know you'll wish someone just knew...and be terrified of that possibility.  Because by now, you've been warned.  And warned.  And warned.

You'll disclose to one person - a friend - hours away.  Eight months later, when you're sure that someone has told - but you're actually in the midst of another crisis - one that terrifies you even more than the previous one - you'll tell again.

But peers.

I know you wanted an adult to know what happened to all of you that night.  I know you want them to know the extent of the terror you felt.  I know you were convinced that this was the time...the time none of us kids would make it out alive.

I know no adult has ever truly gotten that.

And I want to tell you this:

I am an adult now.

And I know.

I want you to know that I believe you.  I have your memories, so in a way, I was there, too.  That's how I know you did nothing wrong.  None of you did.

Whether you ran, hid, stood frozen, whatever you did?

You lived.

You survived.

And that is the most important thing.

Now that I am grown, I promise to always keep you safe.

Remember that you are loved, beyond measure.  

That you are believed, 100%.

That even though nobody came to save you?  

You will save you.

You will be your own hero.

Now, I can say, confidently, that you should never have had to be.  But you were.

You're still six years away from that right now, but it will happen.

You'll get kicked out and you'll be scared as hell, wondering what you'll do.  What will happen to you.  You'll move into your own apartment two-and-a-half years later...and as an adult...almost a dozen years after that?   You'll finally say "Enough."  You will start learning to prioritize your own safety and well-being.

Leaving toxic situations is not as easy as people believe.  "Just leave," often does not apply, especially as a disabled person.  

We were lucky in that we had family a half-hour walk from us that day in 2003, when we packed two bags and a backpack, took my wheelchair, but left my crutches behind.  We were that desperate to get away.  Lucky, again, that there was accessible housing nearby.  Adult me knows that having these things means we are privileged in a way not many disabled people are.

But because we are, let's live.

Because now?  You can be you.

With likes and emotions and safety and love...and all the things you always deserved to have.

You did everything you could.  

It wasn't your fault.

It wasn't your fault.

It wasn't your fault.

It wasn't your fault.

It wasn't your fault.

All the love ever,
Grown-Up Me


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Wednesday, February 19, 2020

The First Thing I Learned About Disability or Disabled People

Blogger Shannon Dingle asked this morning on Twitter, "What’s the first thing you learned in school about disabilities or disabled people?"

I shared that my education about disability began in college, and in many ways (officially) it did.

Pursuing a SPED major briefly meant that I would learn about the hard and fast rule taught by nondisabled professors:

Person-First Language was only way to go.  I was twenty and knew nothing about my history as a disabled person.  Being surrounded by ableism my entire life meant that anything that centered my personhood sounded good to me.  I learned about the ADA for the first time.  The Capitol Crawl.  All these things, as a disabled person, you'd think I would have known by then...

But it got me thinking...

What was the first thing I learned about disability, period?

What were the first messages I got about disability?

Well, those came way before age 20...


At home, the messages I got started early:

My trauma did not matter.  This was the earliest message I got, starting at age 2.  It quickly became apparent that my feelings were of little importance to those around me.

I went through traumatic trach changes daily until I was five years old.  Each time I would apparently panic and struggle to breathe, coughing.  But I would be told, "Don't cough," (because that would cause the hole in my neck to spasm closed.)

I have no memory of these, despite how many of them there were, but I remain highly sensitive to anything involving trauma to the neck, or any facial orifice.


My body was inherently wrong. 

I first shared this moment in a Fosters recap back in 2018:

The first time I remember hearing an ableist comment made about me I was only three years old. I was struggling to get my shirt over my head when I heard (in a mean, teasing, laughing voice):

"You have a square head!"

"No..."  (I'm running shapes in my mind.  Heads are round like circles.  A square has four sides and four points.  He's wrong.  Must've forgot his shapes.  But why is he laughing?)

"Yes, it is.  Look," he puts his hands, not careful, on both sides of my head by my ears.  Then on the front and back.  "It has four sides just like a square.  I'll call you Square Head."

He pulls my shirt down over my head, rough.  Because my Square Head can't fit through the Circle Hole.  He has to pull hard.  It feels like the hole is too small.  But that's not what's wrong.

My head is wrong.  

I feel it go all inside me.  All the wrong.  I wish my head was a circle.  But I can't make it change.

It feels like I am bad.  

Every time he calls me Square Head, the feeling grows bigger and bigger.

[Me at 3 years old, smiling a big, happy CP smile]

Strangely, none of his reasons include that I spent the first year of my life hospitalized (and therefore lying down a lot) and that affected my head shape...

It did not stop at my head.

Every single thing was constantly critiqued - even at 3 years old, 4 years old.

"Sit right," I was told, daily, and I was picked up roughly from my natural W-sit and placed on my butt.  From a seated position I had no choice but to use my hands for balance, so I could not play.

"Smile nice," I was told, when my CP showed too clearly in pictures I posed for.

Even my sleeping was critiqued (which I'll get into in a future blog post.)


Sesame Street was one place in the whole world that I belonged.

My one saving grace at this early age was Linda Bove.  

I watched Sesame Street every single day and I saw a place where someone who was different was seamlessly accepted and adapted for.  Linda couldn't hear.  I couldn't walk.  But watching Sesame Street for an hour a day, we both belonged somewhere.

Follow That Bird came out when I was 4 years old.  And it was the media representation I had always needed.  It began in a way that tiny me was thrilled with, Oscar the Grouch telling the audience that "for The Grouch Anthem, you stay sitting down!"  

I got to see Linda, not only included on the search for Big Bird, but playing a key role in the end of the film.  I got to feel the love of a place that welcomed everyone, no matter if they were Bert and Ernie, or a cow, or kids, Deaf or hearing, disabled or walking.

Thank God for media representation.  Truly.  I don't know where I'd be without it.

Because the truth is, though I grew up disabled, I was inundated with ableism from the time I can remember.  I never fit in.

The messages I got about disability were either nonexistent, or exclusively bad.

Is it any wonder, then, that I clung so hard to Follow That Bird and Sesame Street, as a place where I could belong?


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Monday, February 17, 2020

We Belong: Chapter 7


If you don’t know, two weeks goes by really fast.  But that only happens if something is going to happen that you don’t want at all.  If you are waiting for your birthday, like Jesse and I were last month?  The days feel like years.

Since I really don’t want to have surgery, the days fly by, and before I know it, it’s the night before we go to the hospital.  I remember this part, sort of.  Some good stuff happens because Mom and Dad don’t want us getting too scared.

First, Grandma and Grandpa come.  They’re here because someone has to stay with Seth.  Part of me feels angry that Seth never needs surgery, but most of me feels happy he doesn’t.  Surgery isn’t fun, and I wouldn’t want him to have it.  If we have to have it, I’d rather it be that way.  Seth is too little.

We hug Grandma and Grandpa even though we just saw them.  When everyone goes with Grandma to see Seth and Jesse’s room, Grandpa pats me and sits me close to him.  We don’t talk about scary things.  He sings songs with me.  Since everybody else is busy, he gives me a box of candy - my most favorite - Junior Mints.

“There,” he says, tucking them into my shirt pocket.  “You eat these before 7:00 now.  And don’t tell Grandma I gave you these, she’ll say I spoiled your dinner,” he winks.

“I won’t.  Thank you, Grandpa,” I say, giving him a hug.  I’m sure he brought a mini box of Reese’s Pieces for Jesse, too.  In another quiet moment, Grandpa will give Jesse his candy.  He’s a private person, but very caring.

“Now, what did you and Jesse pick out for dinner?” Grandpa asks.

Another good thing that happens is that Jesse and I pick what we want to eat all day long.  That’s because the night before surgery, we can’t have anything to eat.  Not even a snack.  Then, the next morning, no breakfast either.  Picking what we want for all the meals is a way we can control what happens when we can’t control what’s going to happen to our bodies.

For breakfast, Jesse picked pancakes and sausage.  I picked sandwiches and pickle slices and chips for lunch.  For supper, Jesse and I both picked pizza from our favorite take out place.  I tell Grandpa and he says “That’s nice.”  (That’s his way of being polite.  I don’t think Grandpa likes pizza that much.)

[Image: A plain cheese pizza with a stuffed crust]

Before supper, Jesse whispers to me.  I come into his room and jump when I see Grandma at his top dresser drawer.

“Grandma.  What’s going on?” I say, laughing, even though my heart is beating a lot.

She nods to Jesse and he moves closer to her.  So do I.  We’re so confused when she turns away from us and to her suitcase.  It’s big and brown.  She can fit a ton of stuff in there.

Grandma unzips the suitcase and opens it on the bed.

“Now,” she says, reaching inside it, and pulling out a giant Ziploc bag.  It is full of candy and bubblegum.  You keep this in your top drawer here,” she tells Jesse.  “Where Seth can’t get at it.”

“Wow!  Thanks, Grandma!” he says.  He starts dividing the candy - half for me and half for him - when Grandma pulls out another Ziploc bag.  It’s full, too.

“You didn’t think I’d forget about you, did you?” She smiles.  It makes her whole face softer.

“No,” I say, and I didn’t.  Grandma never forgets me.

“Now don’t tell your grandpa I gave you these.  He’ll get after me for spoiling your dinner,” she says.

“I promise,” I smile.

“I promise,” Jesse echoes.  “Here, Lexie, I’ll put your candy away so Seth doesn’t see it,” he offers, lifting his shirt and hiding it underneath.

A thought occurs to me.  He’s about to open my top dresser drawer.  “Don’t look at my underwear!”

“Gross!  Never in a million years!” he laughs.

Questions for Discussion:

Lexie feels kind of mad and kind of glad that Seth does not need surgery like her and Jesse do.  Have you ever felt two different feelings at the same time like Lexie?

Jesse and Lexie get to pick what they eat all day long!  If you got to pick the menu for a day in your house, what would you pick to eat?


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Saturday, February 15, 2020

20 Must-Reads

I tend to blog about books here from time to time.  I write major in depth posts annually (since 2018) detailing the books I read throughout the year.  But I thought it might be helpful to have a list of the best of the best (with links! So you can find them and read if you want to!)

*Note: The ones written by me were rated 5 stars by other people.  They're on this list because I've read them recently.

1. Adult Children of Emotionally Immature Parents by Lindsey C. Gibson

2. Any Man by Amber Tamblyn

3.  Becoming by Michelle Obama

4. Catching Fire by Suzanne Collins

5.  Children of Blood and Bone by Tomi Adeyemi

6.  Found by me

7. Free Cyntoia by Cyntoia Brown-Long

8.  The Hate U Give by Angie Thomas

9. Healing the Adult Children of Narcissists by Shahida Arabi

10.  The Hunger Games by Suzanne Collins

[Image: A bookshelf surrounded by a heart]

11.  The Kindness of Strangers by Katrina Kittle

12. Know My Name by Chanel Miller

13. Off Balance by Dominique Moceanu

14.  Roll of Thunder, Hear My Cry by Mildred D. Taylor

15.  ROOM by Emma Donaghue

16.  ROOTS by Alex Haley

17. Second Glance by Jodi Picoult

18.  Somewhere Inside by me

19.  My Story by Elizabeth Smart

20. An Unkindness of Ghosts by Rivers Solomon

How many have you read on this list?

Any you are planning to read?


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