Thursday, February 27, 2020

Books Read in 2020: 6-10

889 words
7 minute read

6.

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.

7.

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.

8.

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!

9.

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.

10.

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.


***

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Monday, February 24, 2020

We Belong: Chapter 8

538 words
4 minute read

PLAYING AT THE PARK
(Lexie)

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

778 words
6 minute read

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.  

(Besides, no one leaves these situations anyway.  We escape them.)

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

872 words
7 minute read

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.)

Related: The Bed Thing

***

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

762 words
6 minute read

SPECIAL THINGS
(Lexie)

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

251 words
2 minute read

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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Monday, February 10, 2020

We Belong: Chapter 6

443 words
3 minute read

GRANDMA AND GRANDPA’S
(Jesse)

Grandma and Grandpa’s house is the best place ever, even though they don’t have any electronics like I-Pads or laptops.  Just an old-fashioned phone and a Kindle to read books on.  Grandma Rowan doesn’t read books on it, though.  She mostly plays Solitaire.

“Grandpa!  Grandma!” I call, running through the door into their arms.  “I had a dream your house was all full of boxes and we made a fort!”

“Sounds like your boxes from your new house were coming along in your dreams,” Grandma says, taking my face between her hands and kissing my cheeks.  “Oh, I missed you so much!  Come in and have something to eat!”

It’s no use telling Grandma we ate breakfast already.  She slices some apples and calls Connor and Shane in from outside.

“Hey guys!” Connor waves.  He’s six.  Seth thinks he is even more fun to play with than I am.  I don’t mind.  Much.

“Hey, Lexie!  Wanna swing on the swings with me?” Shane asks.  He’s eight.  Shane’s kind of like me, because he doesn’t like baseball and he’s more gentle.  Connor is rough and a very good athlete.  He could probably play on my team with nine year olds.  He’s better than me.

“Sure!”

First, we have to eat our snack, because Grandma says to.  While we’re eating, Grandpa brings us fresh carrots from his garden.

“Darn it!” Lexie says really loudly.  “You should have brought Carrot Breath, Jesse!”

“Shhh,” I say.  I don’t want my cousins to know I sometimes still play with stuffed animals, even though I know they do, too.

“Oh, is that the brown bunny?” Connor asks.  “I like him.”

“He’s reddish and white, actually,” I say.

“Mr. Hopps is brown,” Lexie fills in.

[Image: a light blue bucket and a red shovel in sand]

We finish our snack and go play outside for a long time.  Connor and Seth play in the sandbox.  Lexie and Shane swing, and I hang on the monkey bars at the very end.  Seeing things upside down is the best.  It took me a long time to learn how to do it, but now I can.

It’s the best day.

It’s the first time since we moved that I feel like I’m home.




Questions for Discussion:

Jesse likes to hang on the monkey bars, Lexie likes to swing and Seth likes to play in the sandbox.  Which of those three things is your favorite?

Jesse feels the most at home at Grandma and Grandpa's.  Where do you feel the most at home?


***

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Sunday, February 9, 2020

What Is a Capacity Shift and How Does It Relate to Disability?

1,532 words
12 minute read

Last week I posted about capacity shift on Facebook, in relation to the most recent chapter of my middle grade novel, We Belong.  I stated simply:

"We live in a very all-or-nothing 🌎 where disabled people are expected to either be able to do things all the time or never at all.

It feels kind of groundbreaking as a writer to have a chapter called "Sometimes, I Can't" that is, essentially, all about capacity shift."

The response I got was unexpected.  Several people (both disabled and nondisabled) commented to say they had never heard of the term and didn't know how it related to disability.  I shared subsequently about hearing the term for the first time in May of 2019 from A.H. Reaume.

By this time, Tara and I were both convinced a further discussion was needed regarding capacity shift and how it relates to disability.  So, we decided to interview each other on the subject and share it with you:

***

What is a capacity shift?

Tonia:  In simple terms, I’d say that capacity shift means a disabled person’s ability to do tasks is not always the same.  Depending on inside or outside factors, our ability to do certain things can change - sometimes at a moment’s notice.

Tara: A capacity shift is a phenomenon where a person's ability to perform a physical or cognitive task can shift along a spectrum. On one end, the task is easy or doable. On the other end, the task is physically or cognitively painful and / or impossible to do based on any number of internal or external factors.

***

What diagnoses / conditions do you notice your capacity shift the most?

Tonia:  I notice capacity shift most with regard to my CP and also C-PTSD.

Tara: I notice it across most or all of my diagnoses. My capacity shifting feels most intrusive with my subsequent brain injury.

***

What are some factors that can influence capacity shift?

Tara: With CP, the big factors for me are cold weather, anxiety and fatigue.

With my subsequent brain injury, my capacity shifts due to noise, fatigue, and multitasking, to name a few.

[Image: Outdoors, a picture of countless snow-covered steps in the middle of winter]


Tonia:  CP-related factors: Cold weather is a huge one.  So winters are difficult in the Midwest.  Anxiety (and other strong emotions) can also make it difficult to move (because strong emotions trigger spasticity.)  Access barriers.  (If I am trying to surmount these, it’s difficult to speak at the same time.)

Trauma-related factors:  Sudden and unexpected or unpredictable stress.  Anniversaries of trauma (some are worse than others.)  These can impact my ability to move and even speak.

Tara: Ooh, yeah! I do notice my capacity shifting due to mental health issues as well. However, these shifts have happened ever since I was very young. And I don’t have a lot of experience in allowing myself space to shift, instead of just shutting down.  It’s a learning process, being able to recognize these shifts as legitimate.

***

When was the first time you experienced a capacity shift?

Tara: The first time I recall clearly having a capacity shift, I was 14 years old and out of town on a school trip for several days. Each day required lots of standing and walking (activities I could normally do fairly easily,) and by the end of one of the days, I was severely nauseated and in tears due to the pain in my leg.

Tonia:  I don’t know about the first time, but the most memorable time was three years ago.  I was surrounded by multiple access barriers and ended up brutally exhausted.

(By brutally exhausted, I mean I could barely move, or speak upon arriving home.)

I was in pain (my arms, ribs, back) for two days.  My legs were too heavy / exhausted to move.  It took eight days to recover my stamina.  I was taking 2 naps a day.  To this day, I am sure it changed my CP.

***

How do people react to your capacity shifting? 

Tara: That is a loaded question! Most often, people minimize it by saying something like, "That happens to everyone - it is no big deal. Push through it." And while I understand that, yes, pain and fatigue are universal, the ability to push through is not.

Occasionally, I will be accused of not caring or not paying attention or not listening. This usually happens when I'm filtering a lot of different input, and my affect becomes flat and / or I'm asking for people to repeat things a lot.

And sometimes, it's implied that I am lazy or faking. This happens if I'm sitting somewhere, and standing implies productivity.

Tonia:  Oh my gosh, yes!  The idea that we must be faking is huge!  Never mind that nondisabled people cannot always do the things they can do on the regular either.  (Things like illness, injury, exhaustion are all seen as valid reasons why nondisabled people cannot function at their usual level.)

The truth is, disability is not a static condition.  But people around us react like it should be.  That if we can do something in one set of conditions, we should be able to do them in all the conditions ever.  But that is just not the case.

When we instituted boundaries and insisted I was no longer coming to inaccessible places in the dead of winter, it was confronted with anger.  It was said that:  “It’s a little hard and Tonia doesn’t want to do it anymore.”  It was also suggested that I get PT and Baclofen injections.

Another time, I was struggling to get into a car, parked inaccessibly.  I was trying to figure out where to hang on and how to get myself in.  Finally someone offered a hand, but with it, said, “Just tell me if you need help!” But I couldn’t, because all of my energy was split between keeping my balance, staying upright and trying to navigate access barriers.

***

How would you like them to react?

Tara: Calmly and with concern if it's warranted, ideally.

Tonia:  You are the best at reacting to my capacity shifts.  One morning, I memorably, did not gauge the distance to the grab bar coming out of the shower.  I was stuck nearly falling, and all I could repeat was, “Uh-oh!”  You turned, and immediately extended a hand to me for stability.

Similarly, once in the middle of a hideous emotional flashback, all I could do was sit in the middle of the kitchen.  I managed to tell you, “I can’t do dishes,” and you said, “You don’t have to.”  You said you’d do them and encouraged me to go do some self care, basically.

***

Let’s talk about the need for rest and capacity shift.

Tonia:  Oh gosh.  Rest is so vital.  It doesn’t really stop capacity from shifting so much as it is 100% necessary for our recovery.

Tara: Rest is hugely important in connection with capacity shift. A capacity shift is really a body or mind hitting or exceeding its capacity for functioning.

Generally, as people with disabilities expend more energy completing daily tasks, we need to rest more often and for longer periods. (People with CP use 3-5 times the energy of nondisabled people to complete the same task, for example.) Outings require more physical and cognitive energy from disabled people - there is more planning, more explanation, more emotional labor in the face of ableism. So, often, even an enjoyable outing exhausts us. And due to the extra energy expenditure, we can spend days or weeks recovering lost stamina.

We do our best to prioritize rest. We nap when we have an early wake-up or a day off, or even just lie down.

***

How does a capacity shift feel physically and / or cognitively? How does it feel emotionally?

Tara: Physically? It can feel like sharp or intense pain. Fatigue is not regular tiredness, it can feel like the flu (nauseated, too tired to move or speak).

Cognitively? It feels like my brain is contorting itself. My thoughts feel like forks jammed into a garbage disposal. Like an engine overheating. Thinking is harder. Speaking is harder. Attending is harder. I can become mute.

Emotionally? Honestly, it's terrifying. People rarely, if ever, understand. Talking about it is essentially opening up for abuse, so I generally don't. So, I'm often quietly struggling.

Tonia:  Physically, it feels daunting.  Exhausting.

Cognitively, it’s so confusing.  The first major time it happened to me, it threw me into a bit of a tailspin doubting myself and asking all of these questions like: “Am I out of shape?”  “What’s wrong with me?”  “How can I not be able to do X?  I’ve always been able to do X.”

Emotionally, it’s really isolating.  And if I’m faced with abuse while it’s going on, or while I recover from it - that makes the isolation and self-doubt even worse.  When capacity shift happens to a disabled person, we need support and understanding.

***

Have you experienced capacity shifts related to your disability?

Let us know in the comments.

***

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Wednesday, February 5, 2020

My Thoughts on Bringing Together Parents of Kids with Disabilities and Disabled Adults

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35 minute read

Yesterday, I listened to the podcast Bringing Together Parents of Kids with Disabilities and Disabled Adults hosted by Ellen Stumbo, and featuring guests Carlyle King and Kevin Timpe.

[Image: A precarious foot bridge extends across a gap into some trees]

The first feeling I had honestly when listening was discomfort - not so much with the topic - but with the power dynamics (which ironically, was something discuss later, though not in the context of the makeup of their panel.)  While it's obvious all three are friends, I felt an immediate imbalance in the conversation (with Ellen and Kevin presumably neurotypical / nondisabled and Carlyle autistic and disabled.)

It's something subtle.  It's difficult to describe.  And I can only speak for myself, but it felt like Carlyle was being called the expert, but still in the position where he had to 'wait to be called on,' so to speak.  That's not exactly what I mean, but it is a feeling that's difficult to put into words.  He was obviously on the outside regarding the dynamic.

In situations like this, I think it would have been helpful to have equal numbers in the dynamic - either a 1:1 or a 2:2 situation.  I know that it's not always possible.  It's also not a criticism, just something I noticed.  (If it must be imbalanced, let the person with the privilege be the one; allow us to have backup.)

I've heard about this topic before.  I've even written about it myself.  So, I was very interested in what would be said in this conversation.  I'll be quoting excerpts from the transcript for clarity, so I better respond to each point.

***

"Most of the time, it seems, parents are focused on changing their kids so that they fit into the world better. Or maybe just don't stick out quite so much, which on a certain level, I kind of understand. But the problem with trying to fit a square peg into a round hole isn't that it takes so much pounding, it's that it destroys the peg." - Carlyle King

This was so my experience as well, and I think many of us with disabilities can relate to what Carlyle's saying here. Especially if we are surrounded by nondisabled caregivers.  Arguably, they are all well-meaning.  They are all doing what they're doing with the best of intentions.  But when you are the kid who spends your entire life - babyhood, childhood, teenagehood, and even adulthood in a space where people around you are trying to change you?  That really is destructive.

And (again speaking for myself) if there was love in the actions, I could not perceive it.  Love doesn't hurt - we're told this often - but then we're whisked off to massive surgeries.  Forced to do what we cannot physically do.  Threatened that if we do not keep up with PT, there will be more surgeries.

Related: When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery

***

"As a parent, when you first recognize that your child has this identity, it's almost always because of a medical context or a school context. And then, you know, with depending on what the disability is, there's medical issues that do need to be addressed. There's therapy issues that do need to be addressed. There's educational challenges that do need to be addressed. But all the early input that frames how you think about this is given by these professional fields that if we look at them more carefully, are really really problematic in their assumptions about disability. That’s then made worse if parents don't directly know disabled adults." - Kevin Timpe

Absolutely!  A big part of this divide or gap, as I call it, is that usually nondisabled parents have only been taught about disability in a singular context:  It's Terrible.  All of the professionals are telling you it is something that needs to be fixed, rather than something that is a part of their identity.

Related:   Parenting Kids with Disabilities: Identity

What nondisabled parents tend not to see right away is that we (with disabilities) have our own culture.  We have certain ways we move, talk, eat, subjects we discuss, adapt, encounter ableism daily, etc.

This is not a bad thing; just a different thing.

Also, on the subject of nondisabled parents don't know disabled people prior to their disabled kid(s) being born: Just like you network to find other parents like you, you can network to find disabled people.

Kevin touched on something really important above as well, regarding nondisabled parents not knowing any disabled adults until their disabled kid is born.  If this is the case?  It is a fine line to navigate.  Know that (speaking for myself again) I love your kids.  I would do anything to protect them and help spare them from any or all of the struggles I endured growing up.

But.

I'm also always aware that while there may be genuine friendship, there is also a lot of implied labor on our end.  It's one thing if we disabled adults volunteer information and suggestions.  But if we are just being looked at as groups of symptoms that match your kid's symptoms - in a What-Can-I-Glean-From-You kind of way?  It can begin to feel gross and dehumanizing.

I guess I'm saying, if you can - make the disabled friends before you happen to have disabled kids.  Value us because we are valuable, not for what we can give you in terms of information about your kid.

***

Carlyle: And this is something that really comes down to a matter of respect of how the person would like to be addressed. 

Kevin:  One of the reasons why I think the respect is hard...

Now, Kevin goes on to speak about the first time many nondisabled parents hear about their child's disability from medical professionals.  These people are professionals in their fields and nondisabled people, especially, come up believing that doctors do possess a certain authority and knowledge about things.  The problem comes when that doctor is without the lived experience of disability.  (The majority of doctors don't have this.)

Doctors are experts in their field, but unless they share your child's diagnosis?  They are not the expert in that.  Many nondisabled parents don't know this, and so, are not only being given lopsided information about their disabled kid.  They are also being told how to feel about it.  (Sad, grief-stricken, because their kid is somehow 'lacking.')

I want to bring us back around to Kevin's initial response to Carlyle, which was: "One of the reasons I think respect is hard..." 

This is an on-the-spot example of the kind of thing disabled people experience all the time.  Carlyle's simply stating that autistic individuals (and the collective community) have preferences around how they would like to be addressed.  And that it is a matter of respect, to honor those wishes.

When disabled people hear things (like how hard respect is) over and over and over, we get the message that we are hard to respect.  Because honestly, it is not hard to consider others.  It's really not.

Nondisabled people show respect for each other all the time.

- They introduce themselves - their title is usually respected - assuming they don't fall into another minority group.

- They drop something.  It's picked up by someone else without a fuss and handed back.

- They ask, "What?" and a snippet of conversation is repeated for them patiently.

- They are at their limit, and their family recognizes this and offers to give them a break.

Respect is not hard.  Overcoming ableist biases is hard.

***

"Most non-speaking autistic people who are given access to alternate communication methods eventually do learn to communicate. And they will eventually come around to say, “I understood everything that you said.” And parents really need to go about this, expecting that to happen, and to understand that there is a person that they're talking about. And my whole message and that of other autistic advocates is that we as people deserve to be respected and to be treated with dignity." - Carlyle King

 “I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME...WHEN YOU TALK ABOUT ME AS IF IM NOT THERE.” - Rhema (from Hard Conversation)

"HI MY NAME IS FOX I TALK WITH LETTERS AND NOT MY MOUTH. PLEASE KNOW THAT I UNDERSTAND EVERYTHING YOU SAY BUT I AM NOT ALWAYS ABLE TO RESPOND. I AM SORRY IF MY BODY DOESN'T LISTEN TO MY MIND I AM TRYING TO ALWAYS BEHAVE BUT IT IS HARD. I HOPE YOU HAVE PATIENCE WITH ME I AM AN INTELLIGENT BOY ONCE YOU GET TO KNOW ME." - Fox (from April 2014 - The first year of conversations)

"YOU CAN EXPLAIN THAT WE ARE NORMAL ON THE INSIDE AND THAT WEIRD QUESTIONS SOMETIMES HURT OUR FEELINGS.  SO KNOW THAT WE ARE VERY SENSITIVE.  YOUR ACTIONS LEAVE LASTING IMPRESSIONS." - Ryan (from Ryan Answers Readers’ Questions)

"When I was younger I got yelled at often about things I could not control. People thought because I could not talk and I moved in repetitive ways I was lost in my own world with no thoughts or feelings. I paid attention to everything." - Phillip (from Can Good Come from Autism?)

***

"I'm thinking for example, sensory issues, right? Like you have some sensory issues and it's pretty common for individuals with autism. I feel like I have sensory issues but I know my sensory issues are most definitely not the sensory issues that you experience. So, if I was the parent of an autistic child and they have sensory issues, chances are, you understand what that means much better than I do because you experienced that as someone on the spectrum." - Ellen Stumbo

This is such a common take by nondisabled parents.  They try so hard to relate, and only have their own experiences to go off of.  Because of this, when friendships develop between disabled and nondisabled adults, those of us who are disabled can sometimes feel our experiences encountering sensory issues (as Ellen brought up) are unintentionally minimized.  Because, for a neurotypical person, sensory issues are momentarily unpleasant.  For an autistic or neurodivergent individual?  Sensory issues are painful, and sometimes incapacitating.

Trying to relate is a very human thing.  We understand that you (a nondisabled parent) are trying to connect with us.  What we need from you instead is first and foremost, your concern.  

If we are having sensory issues and you know about it?  Ask, "Are you okay?" or "Do you need quiet?"  (Yes / no questions require less energy and let us know that you care about the pain we're experiencing.)  

Know that if an autistic / neurodivergent individual is bringing up sensory issues, it's because they are harming us.  We need you to listen.  To take us seriously.

Saying, "I have sensory issues, too," (though Ellen was not saying it in this manner) feels minimizing, since we know that for neurotypical people, the struggle you feel (while totally valid) is widely different from what we experience.

Recognizing that neurotypical sensory issues differ vastly from autistic sensory issues feels like a good start, though.

***

"My daughter, who has Cerebral Palsy, will come home and she'll say, “This happened!” Somebody said something or did something at school, and I can sympathize with her and be upset with her and I’ll say, “Yes, I get it.” And she’ll say, “No, you don't." - Ellen Stumbo

Similar to what's said above, we know you mean well as nondisabled parents.  Sometimes, it even helps to know you share our anger, our hurt or our frustration.  But you don't get it.  Because you can't.  Nondisabled parents might experience occasional slights, events of outright rudeness, etc.  But there is a distinct cultural difference that is being ignored.

As disabled people we experience ableism all the time.  Every day.  I experience it nearly every time I leave to go out anywhere.  It's exhausting and damaging to constantly face an onslaught of reminders that in this society, we are viewed as less.  Less important.  Less valued.  Less worthy.  Less lovable.  Less human.

Allow your kids with disabilities the space to process with whichever safe people they decide they need to talk to.  As above, even well-intentioned attempts to relate can feel dismissive.  We are coached by our nondisabled parents in the same way they were coached by theirs - to not let difficulties bother us.  To just move on.  But that can be dangerous for mental health when factoring in disability.

Your kids need space to talk and process.  They need to know their pain matters and to be able to connect to those in their own community about it.

***

"As Carlyle said, for many autistic individuals, it comes with sort of hyper memory. Right?  This memory that doesn't let things be forgotten. And I remember you telling me that and thinking, “Wow, what are those things that when I was still in this learning process, when I had these problematic assumptions about what disability was and what it meant... What are the things that I said that if my son's memory functions that way, when he's 25, 35, 40, right, he’s going to remember, ‘Dad, this is what you thought?’” - Kevin Timpe

Though I am not autistic, I recently discovered I'm neurodivergent and I recognize my memory functions much the same.  I have memory from as far back as two years old.

As much as I am sure people once in my life would prefer my memory did not function this way, it does.  I remember things.  Especially traumatic, difficult or harmful things.  Those stick with me.  So I really related to Carlyle's comment (elaborated on by Kevin above.)


***

"I have had quite a few moms ask me when their autistic teenager will stop bringing up things that they said when their child was four or five years old. And I tell them, “When you die because it's in there.” - Carlyle King

"I wanted my ballet slippers, and I cried and I cried and I cried...  And you’re sorry that you yelled at me.” - Brooke (From you're sorry)

***

"I'm a disabled parent of a non-disabled child.  Several years ago, my daughter wanted to buy a game. And this was when she was kind of new to having an allowance. And so she asked her mom if she could buy the game and Kristin said, “Go talk to your dad.” And so she did. And I told her, I didn't mind her buying the game, but just looking at it, it seemed like it would be something that I couldn't play because it required a significant amount of manual dexterity. 

And so she ordered the game and it came. And after she had had it for about a day, she brought it to me and she said, I think I figured out how you can play this game. And so she put one hand behind her back and she demonstrated all of the tasks involved the game. And when she was done, she said, “Do you think you can do that?”  

I wish we could figure out some way to put that into the relationship of parents with their disabled child, or for that matter, parents with their disabled peers." - Carlyle King 

I've delved into this phenomenon myself in writing disability fiction, where I explored these reverse dynamics with two characters (one whose father was chronically ill, and the other who had a brain injury herself, and was being raised by nondisabled parents.)

I really became aware of it reading Michelle Obama's book Becoming, in all the interactions she and her brother had with their father, who had MS.  They were so respectful of him...and I believe that comes from the inherent respect children already have for parents.

But when the dynamics are flipped and the child is disabled and the parents are not?  It's difficult, for some reason, for nondisabled parents to transfer that logic:  "Hey, I am raising a tiny human being here.  Someone with their own autonomy and consent.  Someone who will experience a lot of life differently than I do."

This might cause some to cringe, but I do feel it to be true personally: I think there's quite a bit more ownership / entitlement when it comes to nondisabled parents of disabled kids.  We often need more ongoing support and for most of us that does mean relying on our parents perhaps for longer than is traditionally expected.

That does not entitle a parent to claim their disabled child like a belonging.  That is just plain dehumanizing.  

Regarding Carlyle's example, I am so with him.  I do wish that there was a way to somehow transfer that inherent respect a nondisabled kid feels for their disabled parent into other dynamics and interactions featuring disabled people.

***

Kevin:  I could tell that when this friend, the elderly gentleman with Parkinson's would get really bad stuttering, he didn't like it, but you could also just on the faces of people around him see them tune out. The extra time wasn't worth him being part of the conversation. 

Ellen:  Yeah, but that happens to everybody. 

Another oops.  

This gentleman with Parkinson's experience might be relatable for many reasons.  But by immediately saying "But that happens to everybody," minimizes his experience.  Because what happens to him does not happen to everybody.

Now, I extend the benefit of the doubt here, because I know Ellen really well (and because the example she ended up giving did compliment Kevin's example.  This may seem nit-picky - and I'm aware of the many factors going into podcast making, being interviewed, etc.  It's spur of the moment and not everything comes out how you mean it.

But in the interest of continuing the conversation and relating this back to the larger issue of bridging this gap that exists between these two groups, I'm going to address it.  It is really easy to alienate us.  It does not take much.

Luckily, it also does not take much to self-correct here:

"A similar thing happens to my daughter, who has Down Syndrome," for example.

That's specific.  The disabled audience (including Carlyle) knows you are speaking about another disabled person and not "everybody" at large.

***

"I don’t get invited to a lot of things and I have started asking some people why that is. And some of the responses that I've gotten include, “Oh, I wasn't sure if you could do that,” or “I wasn't sure if you'd be able to enjoy that with your disability.” 

And I would really like the opportunity to make that decision. I would like to be invited to things, and it feels good to be invited even to something that I am pretty confident that I wouldn't be able to do just because it feels like a person wants to connect with me and they're leaving that decision up to me. So I really wish we had more people that were willing to put the focus on their friends and walk slower, talk slower, send out the invitation." - Carlyle King

I've experienced this, too.  More often in high school and college (when I had only nondisabled friends) they would say things like, "We were all jumping on the trampoline and I was going to call you but then I realized you couldn't and I didn't want you to feel left out."

Not calling us in the first place doesn't allow many feelings of love, acceptance or welcome.

Let us decide what we can handle.  And when we tell you one way or another, respect that.  (That includes, if we tell you something is a hard no, in no uncertain terms?  Don't keep pushing.  Don't tell us you know we can do it if we just try.  Trust that we know ourselves and our bodies.)

And if we tell you no, understand that doesn't mean stop asking forever, like Carlyle says.  For us, it means, we'd like you to think about ways to adapt.  We do this all the time.  If you are nondisabled and this does not come naturally to you, ask us if we have any ideas, or things you could join us in doing.

***

"It is my friends who are disabled who get my life. And actually, you talked about the peeling layers that disabled people are expected to disclose so much about themselves?  

I find myself being happy that I get to disclose so much about myself.  That maybe for someone who's not disabled, it's not appropriate to write, to talk about certain things, and it's not appropriate to address certain situations, or talk about things in a way that doesn't make you be super grateful, the expectation that you should be grateful about all the things all the time, even if they're not done with the right intention..." - Ellen Stumbo

Let me start by saying I am super glad that Ellen (and perhaps others who relate to her statement) can feel understood and validated by us.  Being able to disclose more about yourself, to be more honest and more forthcoming is freeing in certain respects.

Also, though, this statement comes from a place of privilege.  Ellen (and other nondisabled people / parents) have the luxury of enjoying the choice to freely share with their friends the details of their lives.

This is very different from the lived experience of disabled people who, as she said are expected to disclose.  We are expected to forfeit privacy around medical diagnoses, personal details, and more to an oftentimes entitled nondisabled public.  We have to disclose the most personal details about our lives to keep our insurance, to be approved for adaptive equipment we need to move through the world.

Just another instance to gently point out that we are coming from different cultures here. 

***

"What's the connecting point? Our kids. But then aside from the kids, what is the connecting point? Where is the friendship? And we talk, we've said this. If you're a parent who has kids with disabilities and you don't have any disabled friends, that's the problem, especially if you expect your kid to go to school and to have their friends include them if we're not modeling inclusion. You know, how can we expect children to do it, if we're not even doing it ourselves?" - Ellen Stumbo

It is very important to recognize the need for genuine friendship and I appreciate that sentiment is in here.

I just want to add that disabled adults are our own people.  As I discussed above, if I know your kids and you're a nondisabled parent?  You can bet I love the crap out of your kids.  I will fight for them.  I will do everything I can for them.  That is not, and has never been the issue.

But it becomes tricky - a little fuzzy - when a nondisabled adult's sole existence in a friendship is in this kind of specific context.  Where we are somewhat expected to be 'on call' so to speak.

Now, this is not the case in every disabled / nondisabled friendship and I am not saying that, just that the dynamics can get blurry.  So it's good for everybody to be aware that the disabled adults are being valued and loved and seen for who we are - not just in terms of what we can give you - regarding insight about your disabled kid.

***

Ellen:  I posted on Facebook, that I said, “If I don't fight for my kid, who will?” Which is true, like, like I go to the IEP meetings, but you said…

Carlyle:  Disabled people will.

Heck yes, we will!

***

"I think as parents as we come to recognize that the fierce disability advocates that are changing the world for our kids are actually disabled adults. At some point, that was the parents, because if you had a child with disability, they would go to an institution. Now we have a generation of fierce, amazing, powerful disability advocates." - Ellen Stumbo

Absolutely, this is so important. Ellen also said in my Bridging the Gap post that we are the first generation of disabled people raised outside of institutions, so that does and has taken some getting used to for nondisabled parents.

***

Carlyle: We have already seen that I can go into a group that is focused on this particular topic and I can present ideas and meet with resistance, and then Kevin can take the very same idea...

Kevin: That I learned from you. 

Carlyle: And he can write it in his book and somebody in that same group will turn around and compliment him for this great idea. And it's the same idea. It's just the messenger that's different. 

Yes absolutely.  This happens so often.  

If someone cannot communicate in an expected or widely acceptable way they are often dismissed or simply not heard.  But someone who can communicate in a more expected and / or widely acceptable manner, then they get all the credit and that's not fair.

I think a lot of it comes down to one's ability to soften a point, or a "wholesome approach" to quote Ellen.  If sentiments are not expressed gently enough, or softly enough, we are shut down.

In doing this, autistic, neurodivergent, disabled people are getting the message that nondisabled feelings matter more than we do.  They matter more than our safety.  They matter more than our dignity.  Than our personhood.

Some of us cannot soften ourselves for the comfort of others because of disability.  

If someone came and punched you in the face (and you are nondisabled), you are not expected to soften your reaction for the person who punched you.  To be aware of their comfort first and foremost.

But often, this is what disabled people are forced to do.

We are told if we get angry people won't listen.

But if we are calm, people do not think there is a problem.

***

Carlyle:  If we all work together, we can cover all of these pieces way more efficiently.

Kevin:  But that would be hard to do if those of us who are parents of disabled children don't see disabled adults as our best resource.

As a disabled adult myself, I definitely want to help, as I've said throughout this piece.  I think it's vital that we are considered experts in the disabilities we have and are welcome to teach disabled kids about our culture and how to adapt etc.

But I would caution nondisabled people we are not only resources.

We are fully human.  We had lives before we met you and your kids and we have lives still.  We crave connection, too, and more than that, genuine friendship.

Seek us out because you want a friend - the same reason you seek out nondisabled friends.

We're out here.

So, let's start talking.

***

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