Books I've Read in 2020: 51-55

626 words

5 minute read

51.

Genre:  Poetry

Disability Representation:  One poem has the C-word :/ 

Rating: 4/4 Wheels (Loved it!)

Excerpt of GoodReads Summary:  Where the Sidewalk Ends turns forty! Celebrate with this anniversary edition that features an eye-catching commemorative red sticker. This classic poetry collection, which is both outrageously funny and profound, has been the most beloved of Shel Silverstein's poetry books for generations.

What I Thought:  This book represents my childhood.  I still remember when my grandma brought it for us and read us poetry from it when we were seven years old.  There are still poems I'm super fond of, and that give me that nostalgic feeling.

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52.

Genre:  Young Adult

Disability Representation:  No.

Rating: 4/4 Wheels (Loved it!)

Excerpt of GoodReads Summary:  Jay Reguero plans to spend the last semester of his senior year playing video games before heading to the University of Michigan in the fall. But when he discovers that his Filipino cousin Jun was murdered as part of President Duterte's war on drugs, and no one in the family wants to talk about what happened, Jay travels to the Philippines to find out the real story.

What I Thought:  This book was an unexpected gem that we happened to find because of seeing it mentioned on Twitter.  The writing style was beautiful and we were drawn to the fact that it is OwnVoices literature.  I honestly have never read a book like it.  And it is, so far, one of my favorite new reads of 2020. 

***

53.

Genre:  Classics

Disability Representation:  Yes, I think.  (Ponyboy definitely seems to have symptoms of a brain injury following his concussion.)

Rating: 2/4 Wheels (Liked it!)

Excerpt of GoodReads Summary:  The Outsiders is about two weeks in the life of a 14-year-old boy. The novel tells the story of Ponyboy Curtis and his struggles with right and wrong in a society in which he believes that he is an outsider.

What I Thought:  I first got this book for Christmas when I was thirteen, and have read it many times since then...but not much recently.  I was interested to see how it would read as an adult.  Through most of this book, I found myself annoyed at all the white privilege and racism, I did end up intrigued by Ponyboy's potential TBI / Post Concussive Syndrome symptoms (that are attributed to grief and trauma...which also change the brain.)  Definitely an interesting reread.

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54.

Genre:  Poetry

Disability Representation:  Yes.

Rating: 3/4 Wheels (Really liked it!)

Excerpt of GoodReads Summary:  Reflections of a Peacemaker: A Portrait Through Heartsongs is the final collection of Heartsongs that Mattie was working on when he died. It includes the last poem Mattie penned along with a special collection of unpublished poetry, photographs, and artwork spanning the decade from when he began writing Heartsongs at age three.

What I Thought:  I really enjoyed this book, and felt it gave a really full picture of Mattie as a poet.  There are several favorite poems of his, but especially Purple Moon.  I was also struck by Steps of Heaven as well.  A great portrait of a young poet and what mattered to him.

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55.

Genre:  Children's Fiction

Disability Representation:  No.

Rating: 3/4 Wheels (Really liked it!)

Excerpt of GoodReads Summary:  Trouble crops up because of an

unusual misunderstanding--Junie B. starts to think that her newborn brother is

really a baby monkey!

What I Thought:  Super cute.  I especially loved Principal and Mrs. taking the time to explain things to Junie B. and her classmates, and the fact that Junie B. was not in trouble for the misunderstanding, but was expected to give back the bribes she asked for from her friends.

***

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6 Year Bloggerversary - The Disabled Blogger Tag

1,192 words

9 minute read

In honor of 6 years blogging here at Tonia Says, I thought I'd answer these questions from Elin at My Blurred World, to give newcomers, or anyone, a sense of my blog.

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1. WHEN AND WHY DID YOU START YOUR BLOG?

I started my blog on this day six years ago...because I saw a former coworker sharing an article by a nondisabled parent addressing how to talk to nondisabled kids about disabled ones.  The fact that this article was being recommended made me feel like an important POV was missing.  And when CoWorker came back with more questions, I was like, "I wish there was a place for people to go and get this information from actually disabled people.  Oh wait...I'll make one."

I posted my response to her publicly as my first post on Tonia Says...and went live / shared the site the next day (July 29th, 2014).

But my blog has definitely evolved.  When I first began it, I specifically did so for nondisabled people.  Family members and parents, to educate them, in an effort to make life safer for their disabled loved ones.  (Also, if I am honest, I felt like if I wrote what I wanted to write, no one would read it.  And I wanted my blog to be read.)

When 2020 dawned, I made a conscious shift toward making my blog an actual space for disabled people.  A safe space where disability is discussed openly and the hard things are not shied away from or sugar coated.

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2. DID YOU INTEND TO TALK ABOUT YOUR DISABILITY ONLINE FROM THE BEGINNING?

Yes, definitely.  That was always the plan.

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3. HAVE YOU EVER BEEN SKEPTICAL ABOUT TALKING ABOUT YOUR DISABILITY ONLINE?

Not about my disability but about some of my more personal experiences with ableism.  I've kept a lot private for a variety of reasons.

In 2017, I started to be incrementally more honest, as I became safer.  And at the start of 2020, I decided to start talking about some of the realities I've faced.

However, I don't see the point in keeping my disability private...probably especially because it's visible, and I've never been able to keep it under wraps.

[Image: Tonia in a blue bridesmaid dress holding a bouquet of flowers above her head smiling.  She's in her purple wheelchair. Photo credit: Tara]

***

4. WHAT KIND OF RESPONSE HAVE YOU/DO YOU RECEIVE IN TERMS OF YOUR DISABILITY RELATED BLOG POSTS?

It's really hard to know which posts will resonate.  The ones that I really love and am proud of tend not to do as well as the "educationy" ones or the media reviews, which...aren't my favorite types of things to write.

For reference, here are a few of my personal favorites:

3. We Belong: a middle grade novel - Nine year old twins, Jesse and Lexie Martin, have just moved to a new neighborhood, and away from their cousins and grandparents.  Soon, it's clear, the move is the least of their worries.

2. Why 'Just Forget and Move On' Is Dangerous Advice When Discussing Trauma and Disability - While this advice is possibly helpful for nondisabled people in certain circumstances, it ignores the fact that experiencing ableism is experiencing abuse.

1.  When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery - In two days, I was scheduled to have the majorest of major surgeries for my Cerebral Palsy...and I'd been secretly hoping...with the last of my childhood innocence...that if I got a Magic Nursery Holiday Baby - if love really was magic and all my wishes would come true - then maybe I wouldn't have to have surgery after all.

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5. DO YOU WRITE/TALK ABOUT OTHER TOPICS APART FROM YOUR DISABILITY?

A bit?  I share what I've been reading and I have a miniseries coming in November about writing.  But generally I do stick to disability.

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6. WHAT STEPS DO YOU TAKE TO MAKE YOUR BLOG ACCESSIBLE TO YOURSELF AS WELL AS OTHER PEOPLE?

If I include a video, I transcribe it.  I also include image descriptions.

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7. WHAT IS YOUR FAVOURITE THING ABOUT BLOGGING ABOUT YOUR DISABILITY?

Definitely the connections I have made to the disability and CP community.

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8. WHAT ARE YOUR TOP THREE FAVOURITE DISABILITY RELATED BLOG POSTS THAT YOU’VE EVER PUBLISHED?

I mean...to quote Cory Matthews "There are 700 on this list..."  (Really, more like 400) so I'm going to share the Top 10 Most-Read:

10.  Parenting Kids with Disabilities: Autonomy and Consent - We often hear about the importance of teaching kids they have autonomy over their bodies, and the importance of their consent, but disabled children are often left out of these conversations.

9.  Review: Jack of the Red Hearts - Basically, I was super disturbed having watched this movie, and seen that the only reviews that existed were by neurotypical parents of autistic people who claimed the movie was "great representation."  

8.  Review: Me Before You by Jojo Moyes - When this book was all the rage, and all I could see was ableism...on every page.

7.  Let's Talk About Place Blindness and CP - I'll never forget the day I found the post on Tumblr that simply read: "Anyone else with CP get lost a lot?"  

6.  Dear Parents Whose Baby Has Just Been Diagnosed With CP - Before my whole parenting series happened, there was this single post.  Pretty self-explanatory.

5. Let's Talk About The Effects of Consistent Patronization - Spoiler alert: The biggest one for me was a major case of Impostor Syndrome, where I doubted that any of my accomplishments were legitimate.

4.  What You Need to Know About Blogging About Your Disabled Kids - Where I use cute acronyms to remind nondisabled parents that disabled kids deserve respect and privacy.

3.  Let's Talk About The Gap Between Disabled Adults and Parents of Kids with Disabilities - Nondisabled parents, that is.  The gap is still here.  Some days, I feel it's wider than ever...

2.  An Open Letter to Whitney Ellenby - Because dear God, her article was hideous, and the fact that she has a book out?  Horrifying.  You wouldn't think it necessary to spell out "Stop normalizing and justifying your abuse of your autistic child," and yet...

1.  Parenting Kids with Disabilities: What You Can't See (Invisible Aspects of CP) - CP is brain damage. CP symptoms aren't willful disobedience.  Apparently 28,000 people's minds were blown.

***

9. DO YOU THINK THAT THE DISABLED BLOGGER/YOUTUBER COMMUNITY IS OVERLOOKED?

I do.  It's still largely nondisabled parents of disabled kids who are looked to as the experts.  It's their posts that are widely read and viewed.  And even though we (the disabled community) are constantly sharing our experiences, they are not seen nearly as frequently as nondisabled parents' posts are.

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10. DO YOU FIND IT DIFFICULT TO THINK OF NEW DISABILITY RELATED CONTENT TO PUBLISH?

Not really.  I don't find there to be a shortage.

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11. DO YOU THINK THAT BLOGGING ABOUT YOUR DISABILITY HELPS TO CHANGE PEOPLE’S PERCEPTIONS?

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That's always the hope.

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12. WHO DO YOU TAG?

Anyone who wants to.

***

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We Belong: Chapter 30

836 words

6 minute read

MISSING

(Lexie)

When Dad, Seth and I get home from the movies, Jesse calls my name right away.  He doesn’t sound mad.  That’s good.  I sniff the air and notice that the house smells like burnt cookies.  Mom must’ve been baking.  

“What?” I ask, curious.  Jesse hasn’t said my name in forever.  He hasn’t wanted to see my face or even talk to me.  I don’t even know what I did wrong.  Maybe that’s over now.

“Sophia was here with Shane and Connor and she got in big trouble,” he confides.  

“What did she do?” I ask, remembering last year when she put fish food into the soup on the stove.  That was funny.

Jesse tells me everything.  He tells me about the secret club and about how Sophia was mean to him and wouldn’t let him join, except if she stole his candy.  

I tell Jesse I don’t care about what Sophia said about me.  But it’s not the real truth.  Being left out hurts a lot.  I just don’t tell Jesse that because we just started talking again and I don’t want to wreck that.  I swallow a lot and listen quietly.  

Once, I excuse myself to go to the bathroom.  I don’t really have to go, I just have to cry, and I don’t want to do that in front of Jesse.  He’s being really strong about the club and not getting to join in, but I have been left out of so many things that this hurts extra.

When I get back, I pretend I’m fine.  I make myself forget all about Sophia leaving me out and calling me names, even though Jesse is still talking about it.  I think about my time with Dad and Seth instead.

I can’t believe everything that happened since Seth and I were at the movies.  It was Seth’s first time in the movie theater but he did a good job.  He watched part of the movie standing up, but that’s okay because he’s short.

“...And uncle Craig picked her up right then,” Jesse finishes.

“Wow…” I say, impressed, but I get a sinking feeling inside.  Thinking about uncle Craig makes me remember Mom’s conversation with him.  

“Do you think Mom’s disappointed in us?” I ask, not looking at Jesse.

“Why? Did you do something?” he asks, eyeing me carefully.  

“No!”  

(He should know this.  I always follow the rules.  When I don’t, I think about it for the longest time after.  I still feel bad about the time I didn’t line up after recess when the whistle blew and I had to stand next to the wall with the bad kids.)

“Because I just talked to her and she didn't act disappointed.  Why would Mom be disappointed in us?”

I shrug. 

I know Jesse is super close to Mom, so I don't want to hurt his feelings about her.

I don’t want to have secrets from Jesse anymore, but I can’t make myself say what I’m afraid is true.  That Mom is disappointed that we aren’t doing well after surgery.  That she thinks it’s hard.

(It is hard, but I don’t want it to be hard for her.)

If I tell Jesse what I think, he’ll tell Mom.  They tell each other all the important things.  Like Dad and me.  So I wait.  It’s not really a secret, I tell myself.  I’m going to tell Jesse eventually, just not right now.

Instead, I change the subject.  “Hey, did you know Emma, the Sunday school teacher, has CP like us?”  

Jesse’s eyes light up.  “No way,” he smiles.  “Did she tell you?”

“No.  But she has crutches like me, and she moves just like me," I point out.

“How can you be sure?  You can’t ask.  That’s rude," Jesse warns.

“Why not?  People ask us rude stuff all the time.  Besides asking her if she has CP isn’t the same as me asking her what’s wrong with her," I reason.

“I guess," Jesse admits.

I go over to Jesse’s top drawer, where I moved my candy so Seth won’t find it in my room, since he’s still sleeping in there.  (Jesse said Mom wants us to keep our candy in the kitchen but we haven't moved it there yet.  I'm hoping we won't have to move it there ever.)  I put my hand on the left side and feel, since I’m not tall enough in the wheelchair to see inside.

There’s nothing plastic.  I feel all the way to the right, and find Jesse’s candy.  There’s less of it, but I know it’s his.  He has more Smarties and Skittles.

I have more chocolate.

Well, I had more chocolate.

“Jesse,” I turn blaming eyes on him.  “How could you?”

Return to the Table of Contents

Questions for Discussion:

Lexie cries about being left out.  Have you ever felt like Lexie?

What do you think happened to Lexie's candy?

***

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Books I've Read in 2020: 46-50

571 words

4 minute read

46.

Genre:  Memoir

Disability Representation:  Mental illness

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Mara Wilson has always felt a little young and a little out of place: as the only child on a film set full of adults, the first daughter in a house full of boys, the sole clinically depressed member of the cheerleading squad, a valley girl in New York and a neurotic in California, and one of the few former child actors who has never been in jail or rehab...

What I Thought:  I still remember watching Mrs. Doubtfire as a child, at about 12.  Because of that, I was interested to check out Mara Wilson's memoir.  While not a lot of it was relatable to me, I did really appreciate Mara's candor about mental illness.

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47.

Genre:  Poetry

Disability Representation:  Yes.

Rating: 3/4 Wheels (Really liked it!)

Excerpt of GoodReads Summary:  The award-winning bestselling poetry of 11-year-old Mattie Stepanek has touched the lives of hundreds and thousands of people. From Heartsongs, to Vietnam War Memorial, to Prayer for a Journey, Mattie has written movingly and courageously about life and death, love and loss, faith and hope, innocence and joy.

What I Thought:  This is, I think, my favorite of Mattie's original five books of poetry.  I really relate to his stark view of life and the world, while also trying to find and hold onto hope.  I love his openness about the reality he's living in and that he doesn't hide what he's going through.

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48.

Genre:  Poetry

Disability Representation:  Yes.

Rating: 2/4 Wheels (Liked it!)

Excerpt of GoodReads Summary:  Mattie J.T. Stepanek is an award-winning poet whose struggle with a rare form of Muscular Dystrophy has touched the lives of people nationwide. Celebrate Through Heartsongs, his fourth inspiring collection of poetry, features works written between the ages of three and eleven, and continues to spread Mattie's message of universal hope, peace, courage, and love. 

What I Thought:  I might've given this one a 1/4 wheels rating except that it features Mattie's poem "I AM", which is my absolute favorite by him.

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49.

Genre:  Poetry

Disability Representation:  Yes.

Rating: 1/4 Wheels (It was OK.)

Excerpt of GoodReads Summary:  Mattie J. T. Stepanek has won the hearts of millions with his inspiring poems from his first two New York Times bestsellers. Now he's ready to spread a little love with Loving Through Heartsongs, a beautiful collection of poems written about innocence and trusting love from a child's perspective.

What I Thought:  Honestly, this is probably my least favorite of these five books - but still good - and worth the read!

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50.

Genre:  Dystopia

Disability Representation:  Yes (trauma)

Rating: 1/4 (It was OK)

Excerpt of GoodReads Summary:  The final book in the ground-breaking HUNGER GAMES trilogy, this new foiled edition of MOCKINGJAY is available for a limited period of time. Against all odds, Katniss Everdeen has survived the Hunger Games twice. But now that she's made it out of the bloody arena alive, she's still not safe...

What I Thought:  I reread this one about once a year, and this is my least favorite of the three.  There are aspects I enjoy - "enjoy" is not the right word - but aspects that are revelatory and feel deeply accurate.  But for the most part, I find I don't enjoy where this trilogy ends up.

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Books I've Read in 2020: 41-45

587 words

5 minute read

41.

Genre:  Children's > Picture Books

Disability Representation:  No.

Rating: 1/4 Wheels (It was okay.)

Excerpt of GoodReads Summary:  How would you react if Somebody visited your house while you were gone, especially if the Somebody were a bear?

What I Thought:  This book was okay.  A retelling, not necessarily a super unique take.

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42.

Genre:  Poetry

Disability Representation:  No, but it is OwnVoices as Mattie was disabled.

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Now available in hardcover, a special gift edition with 16 pages of new poems and illustrations, the national bestseller that introduced millions of people to Mattie J.T. Stepanek.

What I Thought:  This remains a really sweet book that I always enjoy.

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43.

Genre:  Poetry

Disability Representation:  Yes, disability is covered in some of the poems and funny pages.

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Kate Margaret Bigalk is a freelance writer and a poet. She is very passionate about what she writes. Kate has the unique ability to put the right words on feelings that don't seem to have any conventional definition...

What I Thought:  Fun fact: I went to summer camp with Kate.  And rereading this one, I was struck by how genius it was for her to include her own Funny Pages (essentially excerpts of her own comedy act.)  What a great way to get your content out there!  I liked this book even more than the first time.  So rare to read work by a disabled author.

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44.

Genre:  Poetry

Disability Representation:  No, but it is OwnVoices as Mattie was disabled.

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Mattie J. T. Stepanek takes us on a Journey Through Heartsongs with more of his moving poems. These poems share the rare wisdom that Mattie has acquired through his struggle with a rare form of muscular dystrophy and the death of his three siblings from the same disease. His life view was one of love and generosity and as a poet and a peacemaker, his desire was to bring his message of peace to as many people as possible.

What I Thought:  I always enjoy reading Mattie's poetry, and I feel like Journey Through Heartsongs gives readers a bit more of an in-depth sense of Mattie as a person - of who he's growing into at this point in time.  There are still the poems he wrote as a little child.  But there's a burgeoning maturity here, evident both due to getting older, but also coping with so many traumas in Mattie's young life.  It all influenced his writing.

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45.

Genre:  Children's Fiction

Disability Representation:  No.

Rating: 3/4 Wheels (Really liked it)

Excerpt of GoodReads Summary:  Meet the World's Funniest Kindergartner--Junie B. Jones! Remember when it was scary to go to school? In the first Junie B. Jones book, it's Junie B.'s first day and she doesn't know anything. She's so scared of the school bus and the meanies on it that when it's time to go home, she doesn't.

What I Thought:  This book made me laugh out loud a couple of times, and that's a difficult thing to achieve.  I really like Junie B. and have fond memories of reading a few of her books to my little brother when he was growing up.  It's a nice dose of nostalgia to read her again - and I'm not sure if I ever had the pleasure of reading this one.

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Why It's Important that Jesse's Mom Holds Him in 'We Belong'

253 words

2 minute read

When I first wrote chapter 29 of We Belong, it was the summer of 2016.

In February of 2020, after I finished writing the story, I stumbled upon the chapter again.  

In its original form, it was scant - sparse.  It gave only the barest details, just indicating that a conversation had taken place.  It gave no indication, however, what the content of that conversation may have been.

I made the decision to go back.  To add more.  (I added more up to the day before I posted this chapter...because it was so important to me.)

[Image: A stock photo where a young son and his mother hug each other.  Both are smiling.]

Over the years - and in a few different mediums - I've noticed a pattern.  Kids with CP are not held or cuddled by their parents.  (Both real, actual kids with CP and characters with CP in books.)  Therefore, it felt vitally important to not only include Jesse's conversation with his mom, but to make it clear that she holds him physically close as the conversation unfolds.

It was important to me that Jesse's mom asks Jesse for consent and respects his fear and hesitance.

We often don't know what's missing in media until it's written or created into existence.  I wanted to create a scene that communicated clearly that children with CP can be hugged and loved by parents in a media landscape where this sort of representation is sorely lacking.

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We Belong: Chapter 29

1,062 words

8 minute read

TELLING MOM

(Jesse)

TW: Ableism

Even though I can't nod, Mom can read my face.

She sends Connor, Shane and Sophia outside with their cookies and talks in the living room, just her and me.

"What's going on, Jess?" she asks.  "You seem really upset."

I nod, feeling miserable.

"She's..." I start.  I still can't even say Sophia's name.

"Sophia?" Mom guesses.  "This is about Sophia.  Okay.  What about her, honey?"

It helps so much that Mom doesn't make a big deal out of me not being able to say Sophia's name.  Now, I can just go on with the story.  If I can get my words out around all the tears.

(Mom looked up some stuff online about kids like me, and now she doesn't make a big deal if I can't talk.  We even went to a kind of doctor before we moved all about this, but I mostly didn't listen.)

She asks if I want to sit on her lap and I do, but I've been afraid to bump my new scars.

"I do...but I don't want it to hurt..." I share softly.

"I don't want it to hurt either," Mom tells me seriously.  "So, we can take our time, and make sure you're comfortable."

Mom takes me carefully onto her lap and lets me lean on her.  All my feelings just come pouring out.  She just holds onto me and lets me cry.

[Image: A mother holds and comforts her son]

When I'm done, she just waits.

"Sophia made this club, I guess?" I say quietly.  "She made Shane and Connor be in it, but she won't let Lexie be in it, because she's always going to need help walking.  She said I could maybe be in it if I talked normal and once I'm done needing the wheelchair."

"Sweetie...  You do talk normal.  Okay?  You do.  What you have is...it's called Situational Mutism.  It just means that in some situations - around some people - you feel very nervous and can't get words out.  But around other people you're fine."

"I never knew..." I admit.

"I know.  We could tell it was hard for you to listen at the doctor.  Dad and I should've told you. We're sorry," Mom apologizes.

"Can you tell my teacher when school starts?  So, I don't get low participation grades?" I ask.

"Yes, absolutely," Mom promises.  "Dad and I...we just...  We want you to know...that there is nothing wrong with you."

"Can I keep going?" I ask.  It makes me feel weird hearing Mom say there's nothing wrong with me, but I can't explain why.

"Sure," she says.

"So, anyways, um...  She's been teasing me?  Like at church and stuff, and whenever we see each other?  Saying whenever she does something mean that if I want her to stop, I should say something, but I can't..."

Mom frowns.  "That's not kind.  I'm so sorry, honey."

"And then today...she found my candy that Grandma gave us?  She said we could trade. Anything I wanted if I gave her the candy.  I wanted to be in the club."

"And did she let you in?" Mom asks.

"Yeah, only she wouldn't let me eat any of the candy and they all could.  And then she kept putting it in front of my face and taking it back.  And she said she was going to go down to the basement and I hide it there because I can't go there..." I say sadly.

Out of everything, it hurts most that Sophia put my candy where I can’t go on purpose.  I’m still practicing climbing stairs, and I definitely can’t carry something extra back up with me.

Mom squeezes me gently.

"I've been lying to Lexie.  Well, not exactly lying, but I haven't told her about the club.  It feels bad, you know?  To leave her out?  But Lexie has so many friends...and everybody likes her.  Connor and Shane are, like, my only friends.  If I don't do what they do, then they'll forget all about me, probably," I say sadly.

"Honey, this is so much for you to be dealing with," Mom comments.  "I know fitting in is important.  It's a big deal."

I nod.

"And it makes sense that you want to keep Connor and Shane's friendship, so you felt pressure to be in Sophia's club.  But, sweetie, a club that leaves people out?  Especially because of things those people can't help or change?  That's not a club I want you or Lexie in."

"Can I say my mom won't let me be in it?" I whisper.

"Yes," Mom nods.  "Are you okay if I ask Sophia to come in now, and get your candy from the basement?"

"Yes," I say, easing off her lap and onto the couch.  "Are you mad at Grandma about the candy?"

"No, but I want it kept in the kitchen, so Dad and I can make sure you and Lexie are only eating one piece a day.  It's just like Halloween candy, Jess.  You can have it all, just not all at once."

"I know," I sigh.

"I love you.  Very much.  And I want you to know you can always talk to me, okay?  Or write me a note.  Whatever's easiest."

"Text you?" I ask, smiling a little and wiping my eyes.  "You know, I could text you if I had my own phone..."

"Middle school, Jesse," Mom smiles back.  "That's the deal.  Now, I'm going to talk to Sophia."

Mom is not happy with Sophia.  She calls uncle Craig on the phone and gives the phone to Sophia to have her tell him all the mean things she has been doing.

She can barely talk because she starts crying right away.  She says everybody’s being mean to her just because she made a club.

That’s not the whole truth.

Mom tells him the whole truth and he leaves right then to come and pick Sophia up.  Before they leave, he makes her apologize to my face and give me my candy back.

When she leaves, it’s just me, Shane and Connor left.

Just like it used to be.

I am so relieved.

Return to the Table of Contents

Question for Discussion:

Jesse talked to his mom when he was upset.  Who do you talk to when you're upset?

***

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Books I've Read in 2020: 36-40

745 words

6 minute read

36.

Genre:  Fiction

Disability Representation:  Yes (Trauma)

Rating: 4/4 Wheels (Love it!)

Excerpt of GoodReads Summary: To five-year-old Jack, Room is the entire world. It is where he was born and grew up; it's where he lives with his Ma as they learn and read and eat and sleep and play. At night, his Ma shuts him safely in the wardrobe, where he is meant to be asleep when Old Nick visits...

What I Thought:  More popular now with the release of the movie on Netflix, I still find myself coming back to ROOM at least annually.  Each time I read, I find myself noticing more and more of Jack's small triggers.  And Ma's.  I remain super appreciative of the time and attention to the aftermath of what Jack and Ma go through.  (I especially appreciated Jack's first trip to the mall and their move into Independent Living together.)

***

37.

Genre:  Fiction

Disability Representation:  Yes (Trauma; Selective Mutism)

Rating: 0/4 Wheels (Did not like it)

Excerpt of GoodReads Summary: Picoult brings to life a female prosecutor whose cherished family is shattered when she learns that her five-year-old son has been sexually abused...

What I Thought:  I've read this book several times over the years, and this is the first time I've really come away disliking it.  To me, Nathaniel is the only redeeming factor.  His character is, for the most part, well-done (at least in regards to his trauma, if not his selective mutism).

Speaking of his mutism, it's difficult not to see Picoult's use of ASL here as a plot device.  As someone who experiences Selective Mutism told me, it's not about the speaking.  The anxiety lies in the attention one gets for communication.  So the entire premise (Nathaniel making the ASL identification that gets misunderstood) is more than a little problematic in my opinion.

Then there's his mother, who I, the reader, am meant to root for.  But all she comes across to me as is selfish.  She's impatient with Nathaniel's natural recovery process and her actions are about herself, not about him.  I resent, too, all the not-so-subtle ways what she did is reinforced as "the best course of action."

I won't be rereading this one again.

38.

Genre:  Fiction

Disability Representation:  No.

Rating: 3/4 Wheels (Really liked it!)

Excerpt of GoodReads Summary: From the bestselling author of Everything I Never Told You, a riveting novel that traces the intertwined fates of the picture-perfect Richardson family and the enigmatic mother and daughter who upend their lives...

What I Thought:  This was a first-time read for me, and I've never read a book like it.  Being the age of Pearl and the Richardson children at the time this book was set (aka a teenager in the late 90s) this felt familiar.  The time period felt like an old friend.  Aside from that, though, this was super satisfying.  Without a traditional "happy ending" and yet I found myself cheering as the different situations in the novel were resolved in ways that felt true, respectful and honoring to the characters.

***          

39.

Genre:  Children's > Picture Books

Disability Representation:  No.

Rating: 2/4 Wheels (Liked it!)

Excerpt of GoodReads Summary:  Wemberly worried about spilling her juice, about shrinking in the bathtub, even about snakes in the radiator. She worried morning, noon, and night. "Worry, worry, worry," her family said. "Too much worry." And Wemberly worried about one thing most of all: her first day of school. But when she meets a fellow worrywart in her class, Wemberly realizes that school is too much fun to waste time worrying!

What I Thought:  This was a cute book.  I liked that Wemberley's worries did not completely disappear by the end.

***

40.

Genre:  Children's > Picture Books

Disability Representation:  No.

Rating: 2/4 Wheels (Liked it!)

Excerpt of GoodReads Summary:  Owen had a fuzzy yellow blanket. "Fuzzy goes where I go," said Owen. But Mrs. Tweezers disagreed. She thought Owen was too old for a blanket. Owen disagreed. No matter what Mrs. Tweezers came up with, Blanket Fairies or vinegar, Owen had the answer. But when school started, Owen't mother knew just what to do, and everyone -- Owen, Fuzzy, and even Mrs. Tweezers -- was happy.

What I Thought:  This book was sweet.  I did not necessarily like that Mrs. Tweezers got to have an opinion on Owen's blanket, but I liked that his mom's solution worked for him.

***

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We Belong: Chapter 28

678 words

5 minute read

SOPHIA THE WORST

(Jesse)

TW: Ableism

For a long time, I wait for official club business.  Will one of them call us to order?  Will I get a secret code name?  But nothing happens.  Sophia sprawls on my bed and eats candy.  Shane and Connor sit on the floor and wait for the bag to get passed to them.

When Connor offers it to me, Sophia leaps up.  “No!  What are you doing?”

“Jesse’s in the club now, he should get candy, too…” Connor says.  He looks a little scared of Sophia.  I think we are all a little bit scared of her.

“That wasn’t the deal.  The deal was, Jesse gets to be in the club and we get to eat his candy.  If he eats his own candy then he can just be out of the club with Loser Lexie.”

My mouth drops open.  

True, Lexie’s not exactly acting like a friend right now, but she’s my twin, and we love each other no matter what.  We definitely don’t let other people call us names.

All my words stay stuck inside but I just manage to reach a pair of Seth’s train pajamas and throw them at Sophia.  They hit her in the face.

“Ew!  These stink like Seth!”

Connor laughs so hard he falls over.

"Kids!  Come and have a cookie!" Mom calls.  

Sophia gets up and runs out of the room before the rest of us even move.

“Why do you let her boss you around?” I whisper to Shane, once we're alone.  

“Because,” he says back in a quiet voice.  “Our clubhouse is her cabin.  She says because it’s like that she’s the boss.”

“But when do I get my code name?” I press softly.

“What?” Shane looks confused. “We don’t do that.  It’s mostly just Sophia bossing us around every day.”

I wrinkle my nose.  “I gave up my candy for this?” I complain in a louder whisper.  “Why didn’t you guys warn me?  Or better yet, why don’t you leave?”

“She says we’re in for life.  She did some My Little Pony magical friendship spell that we have to be her friends or else.”

[Image: A blue My Little Pony toy]

“Jesse!  Connor!  Shane!  Come have a cookie!” Mom calls.

Good.  I’m starving, since I can’t have my candy.

Shane and Connor get up to leave and I hear Sophia say: "I'll help Jesse," and she comes back.

Now it’s just me and Sophia left in the room, she dangles the candy bag in front of my face and then she smiles and skips toward the door.  In her annoying sing-song voice she says, “I’m putting this where I know you can’t go…”  

I raise my eyebrows to tell her I’m on crutches most of the time now and I can go anywhere I want.  It’s like a challenge on my face.

Sophia understands, but smiles a mean smile.  “You can’t go everywhere.  You can’t go downstairs in your basement, and that’s where I’m going.  There’s not even a railing on those stairs for you to hang onto, so ha!”

She walks away, right past Mom in the kitchen, telling a big lie about how she has to get her purse.

Seeing her do that makes me so angry I want to scream.  I feel tears in my eyes instead and a burning feeling in my throat and nose that always happens when I’m trying not to cry.  When I get to the kitchen, I want to tell Mom but I’m embarrassed to whisper to her in front of Sophia, who is back super fast after hiding my candy in the basement.

Mom can see something is wrong, though, from my face, and Shane’s and Connor’s.

“Do you need to talk to me privately?” Mom asks.  It’s probably because, since I feel like I might cry, I must look like it, too.

I can't answer.  I can't even nod my head.

Return to the Table of Contents

Questions for Discussion:

Jesse communicates a lot with facial expressions when he can't talk.  What other ways do you communicate besides talking?

Sophia takes Jesse's candy down to the basement because she knows he can't go there.  Has anyone taken something of yours somewhere you can't go?  How did you feel?

***

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Forging Disability Pride in a World of Ableism

779 words

6 minute read

I've struggled this month about what exactly to post regarding Disability Pride Month.  This is, honestly, the first I've heard of it, despite its existence since I was nine years old.

So, I found some questions to help me sift through and make sense of my thoughts.

***

Do you feel a sense of disability pride?

I do, but it's a very new feeling!  I've spent more time than I want to admit Googling 'disability pride' to figure out exactly what it is.

Taking pride in my being disabled feels like a radical act - especially as we exist in a world where we are constantly reminded that being disabled is a thing nobody should aspire to be.

Most of my life, I have faced dangerous levels of ableism wherever I went and it's hard to keep a sense of pride when people are constantly telling me that I'm inferior.

In the simplest of terms, I do feel pride in my identity as a disabled woman.  I think that being disabled brings with it a lot of things:

We have an amazing community.

We can adapt on the fly and handle life changes smoothly.

We are great at pre-planning.

We often have off-the-charts coping skills.

Saying I have disability pride feels a bit redundant, since I've always been disabled.  I don't know myself without CP.  Without being neurodivergent.  Without a high level of trauma.  Without anxiety.  Without depression.

Do I love myself?  I do.

Have I always?

Not at all.

This road's been rocky, friends.

***

How did you learn about your disability? At what age?

My family was great at talking about something without talking about it.  So while I was always aware of my Cerebral Palsy, we didn't discuss it.

I was always aware that I was born prematurely, and a lot of my pretend play with my Cabbage Patch doll was that she was a "preemie" who spent a lot of time in the hospital, because I did.

I knew I needed surgery, to "help me walk better."

I was never unaware of the word for my disability.  But the first time I remember it being spelled out by a parent, I was in fourth grade, and they were sharing with my class of nondisabled peers about CP.

Back then, it felt awkward and uncomfortable.

By the time I was a senior in high school, I was writing about disability in my high school paper, but having only inspirational or tragic representations to draw from, my take was not the best.

It was finding Tumblr around age 33, and stumbling on a post that talked about identity first language that changed everything.  Shortly after, I started blogging here.

***

What other identities are you proud of? Do they intersect?

I'm proud of my identity as a woman.  I'm proud of my identity as asexual (though I am not asexual solely because I am disabled.)

I'm proud of my identity as a twin.  As a sister.  As a friend.

As a survivor. 

As a writer.

These identities definitely intersect.

They all exist within me.

***

What does disability pride mean to you?

I'm going to get really real here and tell you that disability pride for me means survival.  That, for me, the flip side of disability pride is to live in a constant state of degradation, where I am reminded, no matter what, that I don't fit into this world as I am.  That I must change in order to be loved.

I've lived with anxiety, depression and C-PTSD my whole life.  All three, I believe, due to the ableism I have been surrounded by.  I started self harming at age 10, after massive surgery.  It reached a critical point in my early 20's as I dealt with it (and suicidal thoughts).

Only now, living in accessible housing, and having cut toxic people out of my life, has my pride been able to slowly grow.

We cannot develop pride in an environment that seeks to change the very nature of who we are.

But there is hope.  Trust me.  If you're trapped in an unlivable situation, take it second by second, and hold onto the truth that you are loved.  That you are a part of a tremendous community of people who love all of who you are.

We are more than what they say we are.

***

Are there any images/quotes that represent pride or disability pride to you?

My poem, Love, CP, which I wrote back in 2016.  And this picture:

[Image: A silver necklace, inscribed with the words NOTHING ABOUT US WITHOUT US]

***

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Books I've Read in 2020: 31-35

1,032 words

8 minute read

31.

Genre:  Dystopia

Disability Representation:  Yes (trauma mainly, but also communication disorders)

Rating: 2/4 Wheels (Liked it)

Excerpt of GoodReads Summary:  Against all odds, Katniss has won the Hunger Games. She and fellow District 12 tribute Peeta Mellark are miraculously still alive. Katniss should be relieved, happy even. After all, she has returned to her family and her longtime friend, Gale. Yet nothing is the way Katniss wishes it to be. Gale holds her at an icy distance. Peeta has turned his back on her completely. And there are whispers of a rebellion against the Capitol - a rebellion that Katniss and Peeta may have helped create.

What I Thought:  This is a book I reread often, and I find myself with different perspectives on it each time.  This time I liked it.  I didn't love it, like last year.  While I understood the need to do a lot of planning and seed-planting regarding the uprising, I also felt like there was a lot of lead up to the Quarter Quell and not a lot of the quell itself.

I did, however, find myself really liking Mags and Wiress (and their disability representation.)  While it would have been more satisfying to see anything from their perspectives, I found myself appreciating how Wiress and Beetee communicated best as a team.  And I found myself super curious about Mags, at 80 years old, could potentially remember a time without the Games, which started when she was 6 years old.  She would have won the 7th - 13th Hunger Games.  I found myself wondering how did she do it?  What was her personality like as a young girl?

Likewise, I wondered about the other victors.  Wiress, especially, and Haymitch, too.  This book made me long for a series of backstories.  For Mags.  For Wiress.  For Finnick.  For Annie.  For Peeta.  For Johanna.  For Rue.  For Thresh.

Wouldn't that be something?

To learn how all these victors and kids were before they were tributes?

***

32.

Genre:  Children's

Disability Representation:  No.

Rating: 4/4 Wheels (LOVED it!)

Excerpt of GoodReads Summary:  Tulip...deals with the birthday wishes of all the nine-year-olds in North America. Somewhat reminiscent of the Disney film Prep & Landing, THE ADVENTURES OF TULIP, BIRTHDAY WISH FAIRY gives an inside look into what exactly happens to all those wishes, what Wish Fairies eat for lunch, and what kinds of tools they're issued...

What I Thought:  I love this book.  It's so compassionate and sweet.  The illustrations are fun and the characters feel safe and warm.  So wonderful!

***

33.

Genre:  Dystopia

Disability Representation:  Yes, but horrifying.

Rating: 0/4 Wheels (Never again)

Excerpt of GoodReads Summary:  The Second Civil War was fought over reproductive rights. The chilling resolution: Life is inviolable from the moment of conception until age thirteen. Between the ages of thirteen and eighteen, however, parents can have their child "unwound," whereby all of the child's organs are transplanted into different donors, so life doesn't technically end. Connor is too difficult for his parents to control. Risa, a ward of the state, is not enough to be kept alive. And Lev is a tithe, a child conceived and raised to be unwound. Together, they may have a chance to escape and to survive.

What I Thought:  I read this for the first time around ten years ago, and was curious to see what I'd think if I reread it.  Needless to say, it is not a book I'll ever read again.  The one character who remained compelling to me was Cyrus Finch.  I would have loved to read an entire book focused on him.

As it stood, though, the end did not justify the means...or something.  The plot is horrifying...and remains horrifying.  No matter what is tried to function and regain autonomy within this broken system is..still broken.  The chapter that details the actual unwinding of a child is one I (a survivor of medical trauma) could not read.

I found it exploitative this type of suffering.  Disability representation was problematic, as unwinds who become disabled (and choose disability) cannot be unwound.  But those who (consentually or not) get an unwound child's parts to "cure" them, are still eligible for unwinding.

So problematic.

***

34.

Genre: Fantasy

Disability Representation: Yes (trauma)

Rating: 3 Wheels (Really liked it)

Excerpt of Goodreads Summary: Harry Potter's life is miserable. His parents are dead and he's stuck with his heartless relatives, who force him to live in a tiny closet under the stairs. But his fortune changes when he receives a letter that tells him the truth about himself: he's a wizard. A mysterious visitor rescues him from his relatives and takes him to his new home, Hogwarts School of Witchcraft and Wizardry.

What I Thought: It's been a couple years since I've read this one and it was still enjoyable.  One of my favorite aspects of the Harry Potter universe is still the food.  I love the celebratory aspect of the end, and I noticed that, having read it before, the magical aspects made more sense to me.

***

35.

Genre:  Nonfiction

Disability Representation:  Yes (pretty good, too!)

Rating: 3/4 Wheels (Really good)

Excerpt of GoodReads Summary:  Waking Up White is the book Irving wishes someone had handed her decades ago. By sharing her sometimes cringe-worthy struggle to understand racism and racial tensions, she offers a fresh perspective on bias, stereotypes, manners, and tolerance...

What I Thought:  In the aftermath of George Floyd's murder, I felt moved to do something more.  As a white disabled woman living in the middle of the pandemic, I don't have a lot financially, but I do have white privilege and I can learn about my part in that, especially, by making the point to read a book I already owned.

This did what it set out to do, opening my eyes to the fact that as a white person I do have a race.  It urged me to look twice at beliefs my family held and just how many of them had more to do with being white than I realized.

I'm not finished learning, but this was a good place to start.

***

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