Monday, October 18, 2021

Potentially Overlooked Aspects of Your Child's Transitional IEP

2,243 words
17 minute read

A few years ago, I was approached by a nondisabled parent about their child's upcoming transitional IEP into middle school.

"Is there anything we might be overlooking?" I was asked.

There was no way I could accurately sum up everything in a conversation, so I made notes.  And I kept them.

***

SAFETY (LOCKDOWN & OTHER DRILLS):

My first IEP of sixth grade there was a stark, one-sentence reference.  Something like: “Need to establish [a] safety plan.”  It was a month into the new school year at this point and nothing was set.  People with disabilities are often overlooked when it comes to safety / drills / evacuation plans.  It is early now.  You have time to think and plan.  Make sure a plan exists come September.

[Image: Tonia smiling as a sixth grader]



Fire:

-If there is more than one floor in the school, make sure that your child has all their classes on the ground floor, as well as something like a Tuck-and-Carry (a tarp like piece of fabric - this was provided to me by the school) they can keep in their backpack that can be used by pre-selected staff to safely carry your child down the stairs just in case, should they need to evacuate.  Another staff member should follow with your child’s wheelchair.

Tornado:

-Ensure your child is included in all drills.  

-Know that maintaining balance in a tucked position may be difficult (as stress - even in a drill - impacts our spasticity.) Ask your child if they need support.

Lockdown:

Cabinet - If your child is in their desk (on the perimeter of the classroom) have a closet / cabinet / cupboard empty / accessible and as close as possible to your child’s table / desk in each classroom.  In the event of a lockdown, your child can shelter there.

1. Lockdown is called

2. Your child gets in the closet / cabinet / cupboard

3. Staff / another pre-selected student closes them in.

4. Your child waits quietly until lockdown is called off.

Corner - If your child cannot access their cabinet location, the teacher or a pre-selected student helps them to the floor in the corner closest to them.

1. Lockdown is called

2. Teacher / pre-selected student lifts your child out of their chair

3. Teacher / pre-selected student moves them to the nearest corner.

4. Your child waits quietly until lockdown is called off.

Hallway - If your child is in the hallway when a lockdown is called, they will go into the nearest classroom and shelter there (see: Cabinet or Corner) until the lockdown is called off.

Restroom - If your child is in the restroom when a lockdown is called they will:

1. Stay in the stall

2. Return to the stall ASAP.

3. Keep stall door locked (or main bathroom door if a staff bathroom)

4. Wait quietly until lockdown is called off.

Cafeteria / Gym Class:

1. Lockdown is called

2. Teacher / pre-selected student lifts your child out of them chair

3. Teacher / pre-selected student carries your child to kitchen area / closest office / wherever kids are sheltering

4. Your child waits quietly until lockdown is called off.

Outdoors:  

If danger is apparent and your child is outside, they will:

1.  Go as fast as they can in their wheelchair away from danger.

2.  Find the closest safe place away from school grounds (determine this beforehand, discuss where they can go) and wait there.  Remember that landmarks / recognizable symbols work best.  (The McDonald’s sign, for example.)  Ideally, pick something they can see from school.

3.  Call parents.

***

LOCKER:

Opening their locker could be an issue.  I recall being a new sixth grader and struggling with getting my locker open.  (The first time using a combination locker.)  This involves a couple CP-related aspects that your child may also struggle with.  Fine motor (turning the dial), visual tracking (locating the right number) and sequential movement.  I remember getting in trouble for taking too long opening my locker.

If this is something your child wants to do, they should have the chance to do it, but recognize that this could be stressful.

Accommodations:

-If your child wants to work on and open their locker themselves, allow them extra time.  (Find time for them to practice before school is in session.)

- Keep only what’s absolutely necessary (for example, a jacket and cold lunch) in the locker.  This will ultimately save time and streamline your child’s day.

- If your child finds locker-opening stressful, have aide / para or a peer your child trusts open their locker.

- Could they share a locker with a sibling also in their school?  (Best locker experience I had was sharing one with Tara in high school.  It worked because we trusted each other, and could help each other.)

-Retrofit a locker with a lock that opens with a key (preferably house key-sized)?

RESTROOM:

Having access to the restroom is often overlooked.  I went through the majority of middle school and high school rarely drinking anything and never using the restroom at school because it took too long - and if I did chance it and try to go - there were nondisabled students in the accessible stall, using it to talk to friends.  (This is not uncommon for students with CP to face.)

Accommodations:

- Make sure your child can access the restroom.  Whether this means the outer door is propped ajar or whether it means they have an aide / para / peer to hold the door for them.

- Are there staff bathroom(s) that are more accessible (single person) and / or closer to some of your child’s classes that they could use as needed?

- Factor restroom trips into your child’s day.  (After lunch, perhaps?  Other times as needed.)  Recognize that this will take extra time, but as a basic human need, it is entirely necessary for your child to be able to stay hydrated during the day and use the restroom, the same as any other student.  

-If students are only allotted a certain amount of bathroom passes per class per quarter/trimester/semester, ensure that this number is sufficient for your child’s needs. Adjust if needed.

PASSING TIME:

In middle school, we only had two minutes to go from class to class.  For kids with CP, this is not feasible.  your child will likely need more time to get from class to class, even with their wheelchair.

Accommodations:

- Allow your child two sets of textbooks.  (One set to keep at home, and the other in each classroom.)  This will minimize locker stops and allow them to maximize them passing time getting from place to place.

- Give your child extra time.

- When possible, have your child’s classes near each other.  If there is a way to avoid them needing to travel repeatedly from one end of the school to the other, that would be ideal.

- Recognize that it may take more time for your child to orient themselves in a new school and locate all of their classes due to place blindness - a common issue for those of us with CP.  If possible, they could come in before sixth grade starts on a quiet day (outside of an open house type of event with tons of children) and start to familiarize themselves with the new space. Take pictures.  Having a para / aide (if they do) can help in finding their way when school actually starts.

***If your child has class in an outdoor / portable classroom, recognize that they will need to be able to safely access this even in cold weather.  Factor in a stop for their jacket.  Factor in snow that might hinder their entrance.  Make sure they have help to navigate, especially in the event of cold / snow.

GYM:

Gym class presented various issues.  Often, it was spent apart from peers.  (Scorekeeping is okay once in a while, but when you are always the scorekeeper?  It feels exclusionary.)  Or I was expected to participate in ways that felt unsafe to me.

Accommodations:

- If the kids have to wear a gym uniform, allow your child to, perhaps, only change their shirt.  (This is an accommodation I actually had and it worked well.)  It will save them time, and it will not set them apart from peers as much as not expecting them to change at all.

-If there is a swimming unit, let your child wear their suit to school under their clothes, so changing is as efficient as possible.  (Bring undergarments to change into after swimming.)  Allow your child to opt out of post-swimming shower (no safety bars, slippery, a safety hazard) and shower at home that afternoon / evening instead.

- Allow your child to have options for adaptive equipment on gym days (or allow them to use the adaptive equipment that feels the most safe to them.)  For this to be the most effective, have the gym teacher give your child a heads-up about what they will be doing next time, so they can ask questions and/or figure out what they’ll need.  

-Request a lesson plan at the beginning of the quarter/trimester/semester to get a better feel of what will be covered when - and to anticipate and work out possible issues in advance.

- Ask your child what they feel they need in a given situation.  Don’t assume because they can stand and walk, that they’ll feel confident without their chair in a rough and tumble middle school floor hockey game.  Likewise, don’t assume because they use a wheelchair they cannot participate in a sport.  Get used to thinking together and brainstorming solutions on the fly.

CLASSWORK:

Anything physical takes those of us with CP more time to complete.  This includes writing.  Chances are good that your child might need accommodations in the classroom as well.  

Possible Accommodations:

- Shorter assignments

- A copy of the teacher's notes

Math/Science/Art:

Know that many kids with CP struggle particularly in math.  (A lot of science has a heavy math component.)  If your child is one of these kids, they may struggle in a similar way I did.  I could learn material (though it took longer for it to make sense) to do a certain problem or set of problems.  But I could not carry over information I had learned and apply it to a new set of problems.

Subtracting, dividing, fractions, area, and any spatial concepts (so, art may be difficult as well) required a lot of extra time to understand.  

Possible Accommodations:

- It may help to hear the material presented in a different / simplified manner.  Sometimes hearing a peer explain a concept can make sense more quickly than hearing a teacher's explanation.

- Extra time on tests.

- Any opportunity to teach with manipulatives (like yarn, or blocks - anything tactile) has the potential to really help a math concept “click.”  If possible, have hands-on learning opportunities connected to the math being taught.

ORGANIZATION:

Organization is difficult for those of us with CP to maintain because we are often in a hurry.  If we are rushed, we cannot also make sure things are neat and tidy.  Any opportunity for your child to have access to better organization will help them succeed.

Accommodations:

-Assignment notebook

-Desktop organizer for table in each class / some sort of portable organizer to bring from class to class (Google “desktop organizer” for ideas)

-Erasable pens / mechanical pencils (sharpening pencils = cumbersome at best)

-Color-coded folders and notebooks (different for every class, clearly labeled) Yellow = Math, Green = Reading etc.

-Fanny pack / small purse for personal items

LUNCH:

In sixth grade, I sat with the other kids with disabilities because our paras brought our lunch trays to the same table.  None of the other kids sat with us.  I hated not having a choice in where I sat.

Accommodations:

-Para / peer to help go through hot lunch line, bring tray wherever your child wants to sit

-Lunch from home (which would allow your child to have access to their own food and decide where to sit.)

FIELD TRIPS:

-If possible, get a comprehensive list of these from teachers at the beginning of the quarter / trimester / semester.  

-If there are field trips that do not look feasible (for example, in sixth grade, I joined in on the ski trip and stayed in the lodge the entire time) you will know that ahead of time, and can make the decision to keep your child home on those days.

-Also knowing about field trips in advance allows you to contact the venues ahead of time and inquire about accessibility as thoroughly as is needed.  (Visit corresponding websites, so your child can begin to visualize the space ahead of time when possible.)

***

Though these notes are specific to a child with CP, I hope they give an idea of some areas that may be overlooked.  Realize that adults with your child's disability have insight on what your kids might need.

Your kids need allies in that room.  

And while I can't be in the room with your kids, I want to help them in any way I can.  IEP meetings were nothing short of traumatic for me.  

But they don't have to be.

I hope these notes offer some hope, and are the beginning of a new kind of experience for kids who have IEP meetings, knowing that their whole self is being looked after.

***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, October 11, 2021

When I Failed for the First Time and Didn't Know It

1,009 words
8 minute read

TW: Emotional abuse of a child

I'm in eighth grade.

I'm trying to keep quiet about school.  I can usually get Bs and the occasional A. (With the occasional C.)  But today, in Oral Communications class, we all found out how we did on our speeches that rely on visual aids.

I can't draw at all.  Charts and graphs are confusing.  Asking for help is asking to be mocked, so I don't even bother.

Oral Communications is a class about giving speeches, not about how well we can draw.  So I'd made the informed decision to give my speech without a visual aid.

Everyone else has a letter grade written beside their score.

Everyone but me.

"Girls, how did you do on your speeches today?"

Tara offers her grade reluctantly.

"Tonia?  What did you get?"

"I don't know," I admit.

And then I escape to my room as soon as possible.

***

I may not be sure of my letter grade in this situation, but I am sure that I'm in big trouble.  

My escape hasn't done what I hoped.

I've been followed.

And the conversation is still going on.

"You need to tell me what you got on your speech."

"I already told you, I don't know..." I repeat.

"Of course you know!  Stop playing games and tell me right now!"

"I don't know!  I'm telling the truth."

Patience is wearing thin, but I'm not acting clueless on purpose.  I really have no idea what to say. 

"Show me your grading sheet.  Let me see it!"

I hold off.  I stall as long as I can, but it's no use.  Eventually, I give in and dig around my backpack for the paper.

"Your grade is right here!"

"No, it's not.  I told you.  There's no grade there.  Just a number, so I don't know what I got." I protest.

"32 out of 50!  It says 32 out of 50 right there!  That's an F!  That's your grade!"

Oh.

Crap.

It all goes downhill from here.

My discomfort at the situation makes clear some "bad habits" I've developed -- an adult's words, not mine. My adult has honed in on these things and has told me - in no uncertain terms - that they are unacceptable.  I need to change.  ASAP.

[Tonia, unsmiling, in eighth grade]

Case in point:

While I'm being criticized, I cope by smiling.  Laughing.  Putting my hands up suddenly to cover my face.  I am told this "looks like you're about to barf!  You need to stop doing that!"

Also zeroed in on is my tendency to just...never make eye contact.  Because looking someone in the eye when they're yelling at you is nerve-wracking.  But it's something all adults in my world insist on.  Something I am told I also must change, going forward.

I'm eager to get out of this situation as soon as possible, so I say, a lot of "Okays" and "I knows" in hopes that I will be left alone.

I'm not.

Instead, one of my school notebooks is located -- along with one of my pencils.  I watch in disbelief and embarrassment as the words are written as a heading across the page:

Tonia's Change

1.  NO MORE BARF HANDS!!!!

(Beneath this, there are a few more sentences.  About what is expected instead?  About how unsightly my habit of covering my face is?  My memory won't give up those details.  But the formatting looked a lot like this.)

"Now, [the school guidance counselor] said you didn't look at her when she was talking to you.  That's really disrespectful."

(This visit has merged itself into one single awfully humiliating memory, where the counselor told me sternly: "Tonia, you need to LOOK at people when they're talking to you," with an obvious hand gesture.)

Now, the humiliation is only growing.

The writing continues:

2.  LOOK PEOPLE IN THE EYE WHEN THEY TALK TO YOU

(Again, this was followed by a few more sentences, but I can't tell you their content.  The first point and exactly how it was phrased is permanently stuck in my brain.  The rest is rather fuzzy.)

3.  

(There was definitely a third point on this list.  Or maybe it was just two things?  Like I said...all these years later, I'm not clear on specifics.  What I am clear on, is what happened next...)

Scotch tape is found.  The awful paper gets brought over by my bed.

"Now, I'm going to hang this right here."  The paper is secured the paper to the wall, right by the head of my bed - and in clear view for my little brothers, and any visiting family or friends to see.  "...So that you can see it and remember what you need to do."

"No..." I whine.  

"Yes!  You can't do these things when you grow up."

"I'm taking it down..." I say, rebellious for a moment.  (I won't really be forced to be embarrassed me like this.  I won't really be expected me to leave that up...will I?)

"You'd better not.  I'm going to be back, and I'd better see that still up or you're going to be in even more trouble."

And up it stayed.  For at least a year, until I moved bedrooms.  I had to explain it to friends.  To my younger cousin.  It was beyond humiliating.

Knowing that at least one adult came in our room often, I eventually rebelled as much as I dared, moving the offensive paper from the wall to the side of my desk, which faced my pillow, but not much else.

For a long time, I convinced myself that this was done out of care and concern.  It was the only way I could live with the ongoing humiliation.

These were hallmarks of abuse, trauma, and my then-unknown neurodivergence that someone didn't like seeing, so they humiliated me out of them.  

By ninth grade, I think, I forced myself to make eye contact, no matter how uncomfortable I felt.

And there were no more barf hands.

***

Don't forget to connect on Facebook / Twitter / Instagram

Monday, October 4, 2021

Interview Questions About Writing

1,470 words
11 minute read

If you know me, you know it doesn't take much for me to nerd out and talk about writing.  Since I'm between projects currently, I found these writing questions and answered the first set for you here:

What inspired you to start writing?

When I discovered The Babysitter's Little Sister series as a sixth grader, I was super inspired by how real her characters seemed.  It made me want to write my own story with my own characters.

***

How long have you been writing?

Since I was eleven.  So, most of my life.

***


When did you start writing?

I wrote my first story in a notebook in sixth grade.  I used to get in trouble for writing in it in school.  It's missing several pages (and the cover) now, but I still have the notebook, and I put the existing story into a Google Doc for safekeeping.


***

Have you always wanted to be a writer?

Not always, but ever since age eleven?  Writing's been it for me.

***

What advice would you give a new writer, someone just starting out?

Write because you love it, and it really helps to have people in your corner who encourage and support you.

***

How do you handle writer’s block?

Having a schedule and having a specific combination of scents I like (lotion, candle, oil) really helps writer's block not be a thing for me.

***

What, in your opinion, are the most important elements of good writing?

The most important element of good writing is caring about the characters.  Make sure you're writing the story you want to write and that your love for the characters comes through.

***

What comes first, the plot or characters?

Characters.

***


How do you develop your plot and characters?

Characters have always been tough for me, so I've always been partial to writing with established characters (fanfiction).  From there, I can branch off and make it an AU so that the characters work in the story I want to tell.

The plot, in the beginning is really what's a thing that I really care about and / or want to explore more?  

***

How do you come up with the titles to your books?

They're usually just words or phrases that pop into my head that summarize the story somehow.

***

When did you first consider yourself a writer?

Oh my God.  I was ten, and I had just finished writing my autobiography for a school project.  In my About the Author section I was like: "I love writing books!"

[Tonia, age 10, smiling, right around the time she finished her autobiography]


***

Describe your writing space.

My desk at my laptop in my office.  I've got a bulletin board behind my laptop that has all the cover art for my books (designed by friends).

***

What time of the day do you usually write?

In the morning / pretty soon after I get up.


***

Describe a typical writing day.

Get up.  Post things to my Tonia Says Facebook and Twitter.  Then (hopefully) open my Reading at the Cafe candle (coffee and chocolate pastry), put on some orange scented Energy lotion and a little You Slay pineapple roll-on oil.  Then, I'll write for an hour and a half on average.  My goal is a chapter at a time.  Sometimes, I'll pause in the middle for breakfast and finish after.

***


What is the most difficult part about writing for you?

Oh my God, the self doubt is brutal!  Every few months, it seems, my rejection sensitivity reaches an all time high.  And since my writing is so closely tied to my sense of self (I put so much into my writing) it's really hard when a chapter does not go over as intended, or it's just been a certain amount of time without positive feedback.

(Also getting ideas and researching is really hard for me.  Tara really helps in those areas.)

***

What is your work schedule like when you are writing?

The same as it is when I'm not writing?


***

What would you say is your most interesting writing quirk?

My most interesting writing quirk is apparently not drafting and instead doing like three rounds of editing as I write?  Also, when I write it often feels like I'm just transcribing what my characters say.  And that's really enjoyable.

***

Do you hear from your readers much? What do they say?

My sister and two closest friends read everything and their comments to me are everything.

I struggle with wishing more people would read my writing, instead of reading content featuring disabled characters written by nondisabled people.

***

How do you do research for your books?

Usually a good Google search will do the trick, but if I need something more involved, like a timeline, I'll ask Tara for help, because she loves making timelines (and she's so good at it!)

***

What are the tools of the trade?

My most important one is a notebook that Tara and I share.  We write back and forth to each other each night (before a writing day).  I'll usually share where I'm planning to go in the next chapter and check to see if Tara has any ideas or if she's noticed any plot holes or things I've missed.

Before actually beginning a project (and during) I'll use it to jot down brainstorms or ideas for scenes or bits of dialogue.  Then, I'll check them off as I get to them.

***

What does success mean to you? What is the definition of success?

Success for me is finishing something.  So whenever I finish a novel, it's a big deal.

***

Is writing your full-time career? Or would you like it to be?

Pretty much?  I don't get paid, I write for the love of it, but it's what I spend most of my time doing.  Either novel-writing, or blogging.

***

On a typical day, how much time do you spend writing?

90 minutes to two hours.

***


Are you on social media and can your readers interact with you?

Yes (links are at the bottom of each post.)  And please interact with me.  (Positive feedback is my jam.)


When you’re writing an emotionally draining (or sexy, or sad, etc) scene, how do you get in the mood?

Writing is cathartic for me.  As a trauma survivor I'm usually emotionally drained and at least a little sad.  So, it's not really a challenge for me to go to dark places.  (Sexy?  Not so much, but I don't write that.)

***

Writing can be an emotionally draining and stressful pursuit. Any tips for aspiring writers?

Pace yourself.  If you need to take days off, take days off.

***

How do you deal with emotional impact of a book (on yourself) as you are writing the story?

It's hard!  I've cried writing scenes.

***

How do you handle literary criticism?

Negative feedback is hard to hear.  I'm generally always braced for it, so it doesn't catch me off guard.

***

How do you deal with poor reviews? 

It's frustrating.  But I try to remind myself that not everybody has to like everything I write.  (Again, I'm pretty much always braced for criticism.)


How much ‘world building’ takes place before you start writing?

I don't really get into that stuff.  That's where having established characters helps.

***

Is there lots to do before you drive in and start writing the story?

In my current series I usually need about 2 weeks of planning before I'm ready to dive in and start writing.  By now, it's down to making sure I do a character survey and various personality tests for any new characters.

***


When writing a series how do you keep things fresh, for both your readers and also yourself?

Sometimes, a time jump helps.  Sometimes, introducing new characters.


***

What was your favorite part, and your least favorite part, of the publishing journey?

My favorite part is when people read it.  My least favorite part is the pervasive belief that writing needs to be traditionally published (by a big name, besides) to be valid.

***

Do you find it more challenging to write the first book in a series or to write the subsequent novels?

The first one, for sure!  Creating something where nothing exists is always the challenge for me.  Sequels are almost relaxing because so much is already established and I've gotten to know my characters.

***

Describe your perfect book hero or heroine.

My writing honestly doesn't have those.  It just has people, living their lives.  I don't want to write about somebody perfect.  I can't relate to that.  I'd rather read (and write) about characters that feel real.  

***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, September 27, 2021

5 Highly-Praised Books About Disability You'd Be Better Off Skipping

396 words
3 minute read

I'm sure that even if you haven't been around disabled people, you've heard of at least one book on this list.  That's because the five books I'm about to share are highly-praised and often-recommended.  Yes, they feature disabled characters.  They also feature highly problematic characterization.  And they are all written by nondisabled authors.  (The books about kids with CP were written by parents of kids with CP...)

So, buckle up, and prepare to add these to your do not read list:

***

[Image: The cover of Jamie Sumner's Roll with It

1.  Roll with It by Jamie Sumner (Middle Grade, 2019)

This one is just...it's been recommended all over the place.  It's on all kinds of lists as good disability representation to read with kids as young as fifth grade, and it is nothing short of alarming in its portrayal of Ellie, a 12 year old with CP.  (Read my full thoughts on the book here.)

***

2.  Out of My Mind by Sharon Draper (Middle Grade, 2010)

In a similar vein, this book is on almost every list I see, for little kids, and there is no indication of the harm in these pages.  Melody is 11 years old and nonverbal (also with CP).  See my full review on the book here.

***

3. Say What You Will by Cammie McGovern (Fiction, 2014)

Amy is 17 years old and has CP.  This representation is stunningly terrifying.  I did a chapter by chapter analysis of this book.  You can find it here.

***

4.  Wonder by RJ Palacio (Middle Grade, 2012)

I'm sure you've heard about Wonder.  It was made into a film in recent years.  10-year-old Auggie has "something similar to Treacher-Collins Syndrome" and while the first 20% of the book is solidly good, the rest just devolves.  You can read my review on it here.

***

5. Me Before You by Jojo Moyes (Romance, 2012)

Likewise, I'm positive you've heard of this one.  It was also made into a movie in recent years.  Will was recently paralyzed and Louisa (an inexperienced carer) is hired to help him.  It's hideous.  This is one of the first books I ever reviewed here.

***

If you're asking "What do I read instead?" right about now, check out 10 of My Favorite Books Written By Disabled Authors.


***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, September 20, 2021

13 Reasons Why: Alex and Bryce

2,566 words
20 minute read

TW: GIF Warning
Reference to drug use
Discussion of mental illness (emotional neglect, depression)
Reference to murder by drowning
Discussion of suicide attempt

Spoilers for Season 2 and 3 of 13 Reasons Why

***

Both Alex, and the show's antagonist Bryce are complex characters.  They shared a bit of screen time and even hung out on rare occasions.  Tara and I felt a post about them was necessary to unpack some important topics, like drug use, mental illness, dignity of risk and more.


***

In 3x05, Alex and Bryce bond over the isolation and alienation each feels, and get high together.  

We’ve read in What Happened to You (a book about trauma by Dr. Bruce Perry and Oprah Winfrey) that drug use is always a coping mechanism.

Do we think that’s the case here?

TARA: Drugs and alcohol are often used as self-medication, yes. And I can see that being the case for both Alex and Bryce. For Bryce, they are used as emotional anesthetics. And for Alex, steroids may curb his depression by enhancing his body.

TONIA:  I think loneliness is powerful.  It sounds cliche, but people do need people.

Bryce, in particular, has become a pariah in the aftermath of the sexual assault case against him.  Using drugs is a way to escape that reality.  And dealing drugs is a way to ensure people stay close.  

Their friendship is weird.  Alex was accepted by Bryce’s crowd before his suicide attempt.  Afterward, (as we saw in Alex’s Birthday,) Bryce was among the people kids who taunted Alex with ableist remarks, couched in niceness.

Now, Alex does rely on Bryce to get drugs, but also for companionship.  He’s been struggling in his romantic relationships because of a whole host of reasons, and Alex isn’t happy with himself.

In short, I do think they’re both coping with a lot, and both lack emotional support and mental health help they need to deal with what’s actually going on in their lives.

Whew.  That was long-winded.  

***

Do we want to talk about Alex, Bryce, and risk and consequences? I know we touched a bit on Alex’s dignity of risk earlier in the series. Is there more to say?

TONIA:  Bryce’s one rule to the peers he keeps around him is “Keep me clean.”  This means these peers are supposed to take the fall for Bryce always.  In Season 1, Alex overhears Bryce raping Hannah at a party.  He dispassionately asks Monty, “Who is that?” as he’s able to hear the girl.

Monty checks and passes along that it’s Bryce and a girl in the hot tub.  Alex comments, “Must be a desperate sl*t at this hour…”

Though it’s common knowledge that all of Bryce’s relationships are based in power and control, because of that power, and the social capital Bryce possesses, none of his peers want to hold him accountable.

There is no thought on Monty or Alex’s part to check on the girl’s well-being, or tell an adult.

Bryce is free to grope girls, rape them (he admitted to raping as many as ten) to drink and get drunk in front of his parents, to do drugs without consequence.  He badly beats a classmate.  For all of this, he receives minimal consequences, if any.

Due to Bryce’s privilege, when he gets three months’ probation for raping classmate, Jessica, he feels that serving that “punishment” is sufficient. Once three months have passed, he fully expects to be able to move on as though nothing had happened. 

This is due, in large part, to his being constantly shielded and protected from taking any responsibility.  So any additional consequences he gets, even minor ones, feel big.

Bryce’s refrain in the last half of Season 3 is that he is “trying to move on, but no one will let me.”  He sees himself as a victim, even after taking massive risks and really harming other people in the process.

Tara, do you want to contrast this with Alex again?

TARA: It’s interesting that, while Bryce is largely consequence-averse, Alex seems to crave accountability. We see this first when faced with a lack of consequences when the tapes and subsequently the subpoenas came out. When Deputy Standall mentioned getting Alex out of testifying the first time, this seemed to directly lead to Alex’s suicide attempt. 

As far as dignity of risk goes, we do see a lot of risk-taking with Alex. (Fighting, drinking and substance use, impulsive behaviors.) We also see a fair bit of protection / overprotection and restriction. (Diet, first-person shooter games, even getting a job at Baker Drug was initially questioned. Not to mention the cover-up of Bryce’s murder, which seems to have been done without Alex’s consent.)  

TONIA: It’s interesting that we’ve pointed out how Bryce has coerced those around him to shield him from any responsibility, whereas for Alex, the shielding has always happened against his will.  

Alex mentions the weight of his own guilt several times.  He wants to own up to what he did, but he is actually made to feel guilt for that in response.  Alex is reminded, regardless of how gently, that many of his friends and his dad have put everything on the line for him.

They are determined to give Alex a life outside of prison, whether Alex wants it or not, which we touched on briefly in Alex's Relationship with His Dad.

This seems to be a huge example of the trope that Nondisabled People Know Better.  In this trope, consent of the disabled person does not matter because of the (wrong) belief that nondisabled people know better than a disabled person what’s good for them.

Alex is constantly protected from consequences.  So is Bryce, but Bryce had the freedom and the power to make that happen for himself.  Whereas Alex is made a bystander in his own life.

[Alex pounds a locker and asks angrily: "Why is everyone protecting me?"]



TARA: And this is a sensitive issue, but “13” does walk the line between really showing the value of a disabled person’s life while also taking away Alex’s autonomy in his serious consideration of another suicide attempt after killing Bryce. 

Instead, his friends - who have enormous distrust in all types of authority figures - concoct an elaborate cover-up and alternate theory for Bryce’s murder. They even enlist the help of Deputy Standall, who destroys evidence to help his son. 

As far as we see on the show, Alex is never consulted. He is saved and then forced to live not only with the guilt of his actions, but also with the knowledge that his friends and father made themselves accomplices. So, telling his truth would also mean that consequences would befall Alex’s loved ones.

In Season 2, it is mentioned that Alex is seeing a counselor. But we don’t see any type of aftercare for him following this second close call at a suicide attempt.

***

We see Alex struggle with depression throughout the series - particularly having to do with the tapes, which played a pivotal role in Alex’s decision to attempt to take his own life. 

Post-injury in Season 2, we see Alex listening to the tapes again. Since he has amnesia due to his suicide attempt, he cannot recall listening to them initially. Because he wants to be deemed fit to testify in the court case against the school district, Alex forces himself to listen to the tapes several more times. Ultimately, he is deemed unfit to testify. 

In Season 3, Bryce asks Tony if he can listen to copies of the tapes. He has an emotional reaction to hearing them for the first time, and quickly slides toward depression himself.  

Let’s talk about privilege, trauma, emotional labor and depression. How does Alex’s brain injury factor in?

TONIA:  What a complex question.  I love it.

Recently, we did rewatch Bryce’s arc, I guess you’d call it.  Where he begins coming to an awareness that he needs help because he “doesn’t know how to be.”  

It’s quite clear to us that Bryce suffered from emotional neglect all through his life, including his babyhood, because his mother experienced postpartum depression after Bryce was born.  She is, in fact, explicit about not holding, not loving, and even blaming baby Bryce for “not needing her” when she finally made her way out of that depression.

Being aware of the pain he caused others meant facing some uncomfortable and / or painful realities for the first time.  Bryce fumbles in his attempts to set things right (by doing what was modeled for him and throwing money or material things at others’ gaping wounds and hoping that will be sufficient.)

During one such attempt to make amends, he tells Tony, “I think about Hannah every day.”  Tony challenges Bryce: “Really?  What do you think about her?”  Tony comes to realize Bryce has never bothered to listen to the tapes, despite them having been posted online for two months.

Bryce says he’ll listen now.  He does.  One time.  (With Tony at his side the whole time...speaking of emotional labor and trauma.)  And Bryce has an immediate and strong reaction (due in large part to his working with a counselor and having been made aware of emotions both in himself and other people.

“Maybe I should be dead,” he says.

“Maybe no one should be,” Tony counters.

Because of wealth and privilege, Bryce gets to largely shirk the responsibility of hearing the harm he caused a classmate.  When, as Tony so aptly puts it, “They’re all your tapes.”

Unused to feelings or being held accountable for his actions, Bryce is quickly overwhelmed.  On Tony’s advice to “deal with your shit,” Bryce wastes no time in making things as right as possible.  But he does not consider the possibility that Hannah’s mom and Jessica may not be ready for this.

He is still so emotionally immature and quite self centered at this point (early in his self-discovery), that all that matters to Bryce is Bryce’s feelings.  He needs to feel better.  He needs to be able to say the right things and do the right things, so he feels relief.

Tara, do you want to contrast this with Alex’s experience?

TARA: Bryce’s privilege allowed him to listen to the tapes a total of one time through, months after they were recorded. 

Alex, on the other hand, has listened to the set of tapes multiple times. A few of these times were prior to his suicide attempt, while the rest of them took place afterward. The court required Alex (who had initially been subpoenaed) to be cleared by a doctor to testify in the case against the school district, due to his brain injury. Memory issues forced him to relive the trauma on the tapes that contributed to his own suicide attempt over and over, while he struggled to recall the details. 

Alex’s brain injury as well as the requirements of an ableist court system compelled him to perform an exorbitant amount of emotional labor, only to be ultimately deemed unfit to testify. 

Being confronted with new physical limits after an injury - particularly after such draining cognitive and emotional labor - can definitely contribute to depression, as we see with Alex in Season 2. 

***

In 3x13, it is revealed that Alex overpowered Bryce, who was injured, and pushed him off a pier and into the water below. He and Jessica then watched as Bryce struggled and drowned.

Is this yet another portrayal of the Violent TBI Survivor? Why or why not? 

TONIA:  I think it’s easy to see that portrayal, yes.

I’ve always really struggled with it because there are so many possibilities for that aspect of the show -- as one of the characters, Ani says, “Everyone had their reasons [for wanting antagonist Bryce dead.]”  And yet, Alex is the one that did it.

I get that it’s possible.  I just think it also further alienates disabled folks and, perhaps, puts us in more danger.  

The only thing that makes it remotely palatable for me (which is to say, not much) is that it’s clearly not just about his TBI.  Alex has been using steroids, which contribute to his actions.

TARA: At a glance, this scene does appear to tick all of those boxes. However, Alex as a character was allowed to develop and grow over episodes and seasons. We, as an audience, got to know his personality, insecurities and motivations. Alex’s connection to Bryce has been complex and fraught since Season 1, prior to Alex’s injury and suicide attempt. I think the storyline was well thought out, and it made sense. 

Moreover, after Bryce’s drowning, Alex is not portrayed as a monster. We see, due to his steroid use, his short temper sometimes veers into emotional abuse. But he is not someone that people actively and consistently fear. Instead, he is someone his friends and family endeavor to protect - but again, without veering into pity stereotypes.

TONIA: What you said about Alex not being portrayed as a monster after he pushes Bryce off the pier is really resonating.

Because, wouldn’t it be easy to villainize Alex after something like this -- especially with the stereotype and how it relates to Alex’s brain injury?  So, it does seem notable that we’re not reminded at every turn that Alex is a monster.

It’s a big topic and a difficult scene to watch, but I think your comments do make me feel a bit better about the portrayal.

*** 

We hear Alex repeatedly described as “kind”.  Even, “the kindest person I know.”  This perception of him seems to matter more than what Alex is actually capable of AND what he craves accountability for.

Can we talk about how the Nondisabled Gaze impacts how Alex is seen?

TONIA:  Killing Bryce is seen as widely “justifiable” because of the perception of him that existed: Bryce was the villain.  Bryce hurt people.

We as an audience need our world to make sense: good people and bad.  Heroes and villains.  Disabled people are often portrayed as angelic simply BECAUSE we are disabled.

We see that no matter what else Alex is or does, he is stuck in others’ perception of him.

TARA: First, I can definitely see how the Nondisabled Gaze played a part in this particular storyline for Alex. The tagline for Season 3 was “Who Killed Bryce Walker?” and ultimately, I think, it was someone people least suspected - myself included.

People with disabilities are viewed in all sorts of problematic ways - as pitiable, frail, helpless, manipulative or even as fakers of disability. And TBI survivors, in particular, are often seen as violent. 

Alex, a rather delicate white teen, however, would be given the benefit of the doubt more readily, due to his privilege and associated stereotypes. 

Secondly, though, I have to say - because “13” is a show that lives in the gray areas of life - that Alex can be both “the kindest person” known to one person and capable of killing a different person. And I think that “13 Reasons Why” showed us both of those sides of Alex.

***

Have you seen 13 Reasons Why on Netflix?  

Did reading our conversation about Alex and Bryce help you realize anything or notice anything you hadn't registered before?  

We'd love to hear from you in the comments.

***

Don't forget to connect on Facebook / Twitter / Instagram

Connect with Tara on Twitter @TaraJean

Monday, September 13, 2021

The Danger of Forced Friendships Between Disabled Kids and Nondisabled Peers

1,242 words
10 minute read

It's stunning to me that even today, I see parents discussing how nondisabled children get "assigned" to play with their disabled kids.   Where things like giving a disabled child a nondisabled "buddy" is considered widely positive, with no real consideration of the possible danger.

In fact, I have yet to read anything that adequately describes this phenomenon from a disabled point of view, so I decided to interview my twin sister, Tara, and another friend (who wishes to remain anonymous.)  Both have a primary diagnosis of CP and both have experienced forced friendships.

I chose to interview both of them, in an effort to show that the danger of forced friendships is not a one-off.  It does not exist in a vacuum.

It's common.  

And I'm so grateful to these two for their candor on the subject.

***

[Tara, left, and Tonia, right, dressed in winter jackets and scarves.  Second grade.]


TW: mention of repeated physical and sexual assault of a child


FORCED FRIENDSHIP IN ELEMENTARY SCHOOL:

TONIA SAYS:  If you’re comfortable, share a little about what your life was like around the time you first experienced forced friendship with a nondisabled peer?

TARA:  As a child, I had undiagnosed situational mutism - a severe anxiety disorder that, for me, meant that I could not speak to people I did not live with. (Speaking to adults one-on-one was slightly easier.) By the age of 4, the recommendation was to normalize nondisabled peer contact. By the age of 7, I’d experienced six moves and five different schools. I had sessions during school with a music therapist, and a social worker had assessed me. 

As part of music therapy, I had to invite classmates - one at a time - to my session to practice talking

***

TONIA SAYS:  (As you’re comfortable) Talk about your experience being forced into friendship with a nondisabled peer?  Why is it dangerous?

TARA:  The practice sessions in music therapy soon gave way to this idea that I was going to host a sleepover with a single classmate as my guest. My music therapist facilitated invitations with me sitting silently by. She’d ask, “Do you want to invite So-And-So to your sleepover?” And I’d nod indiscriminately, attempting to shorten the painful process.

The classmate I ended up hosting was cheerful and outgoing around others, but in private, she physically overpowered me. Over the next nearly 24 hours, she assaulted me physically and sexually multiple times. When my mom checked on us, my classmate assured her that we were doing fine and having fun playing, exploiting my inability to speak.

***

TONIA SAYS:  There’s always another way to do things, as we know, being disabled.  Instead of a forced friendship, what would have helped you?

TARA:  Honestly, just about anything else would have been better. 

***

TONIA SAYS: It seems hugely negligent - despicable in fact - that adults in your life failed to ensure your safety.  It seems like they were more concerned with treating a symptom than addressing an underlying issue.  Or -- correct me if I’m wrong -- trying to make you more “normal?” 

TARA:  It’s a huge misconception among parents of disabled kids that we need nondisabled friendships to be healthy and happy. Sometimes, this is taken even further. It’s insinuated that friendships with fellow disabled kids teach us bad habits and make us stick out. This both reinforces internalized ableism and that inherent power imbalance in friendships with nondisabled children. 

***

TONIA SAYS:  If you could say anything to nondisabled parents, and professionals who work in the school system, what would you tell them in regards to forced friendships?

TARA:  Forced friendships with nondisabled peers makes abuse of some kind not only possible but probable. 

***

TW: mention of emotional abuse and harassment of a child

FORCED FRIENDSHIP IN MIDDLE SCHOOL:

TONIA SAYS:  If you’re comfortable, share a little about what your life was like around the time you first experienced forced friendship with a nondisabled peer?

ANONYMOUS: I had just made the transition from elementary school to middle school. Because of my disability, I was forced to go to the only accessible middle school in our district without stairs. As a result I was separated from all my friends I had grown up with. So here I was at a new school, knowing absolutely no one. 

It was at this time also I developed severe panic attacks that impacted my school life. The teachers didn’t understand the situation and assumed that my panic attacks were the result of not having friends in my new school. 

So their solution was to find new friends for me. 

***

TONIA SAYS:  (As you’re comfortable) Talk about your experience being forced into friendship with a nondisabled peer?  Why is it dangerous?

ANONYMOUS: Unfortunately, I did not click with the person I was set up with to become friends. Even after I had made my own friends I was continually grouped with this person and felt forced to keep up a “friendship” that I did not want. 

Because of my anxiety, I did not know how to get myself out of it. This person had been put into all my classes with me. I felt trapped. 

This forced friendship continued through my entire middle school life and even into high school, and as time went on this person made me increasingly uncomfortable. They became possessive and manipulative, and I began to experience several forms of harassment once I did try to break the friendship off. 

It wasn’t until almost a decade later I was finally able to safely get away from this person.

***

TONIA SAYS:  There’s always another way to do things, as we know, being disabled.  Instead of a forced friendship, what would have helped you?

ANONYMOUS: Instead of forced friendships, I wish the adults in my life had taken the time to learn about what I was going through, and to get the right help I needed to manage my panic attacks. I needed coping strategies and emotional support, not help making friends. 

Building friendships was never a struggle for me, and they were not the source for my panic attacks. Forcing me into a friendship I did not want solved nothing, and in fact may have put me in danger with an unsafe person. 

***

TONIA SAYS:  It seems hugely negligent - despicable in fact - that adults in your life failed to ensure your safety.  It seems like they were more concerned with treating a symptom than addressing an underlying issue.  Or -- correct me if I’m wrong -- trying to make you more “normal?” 

ANONYMOUS:  I think for sure they were most concerned with treating symptoms and getting me back to “normal” but overall, they had failed to recognize that there was even an underlying mental health problem present in the first place. 

***

TONIA SAYS: If you could say anything to nondisabled parents, and professionals who work in the school system, what would you tell them in regards to forced friendships pairing disabled kids with nondisabled kids?

ANONYMOUS: Forcing children into friendships is a recipe for disaster. They are not formed by genuine connection or interest, and more times than not, set a disabled child up to be taken advantage of or abused by their peers.

***

Have you experienced a forced friendship with a nondisabled peer?  Let me know in the comments.  (Select anonymous commenting if you wish to remain anonymous.)

***

Don't forget to connect on Facebook / Twitter / Instagram


Monday, September 6, 2021

When CP Leads to Falling and Falling Triggers Past Trauma

1,141 words
9 minute read

When you have CP, falling is a fact of life.

We fall all the time.  A young friend with CP once memorably told us: "I've probably fallen 1,000 times.  That is not an exaggeration."

Transitioning to using a wheelchair full time has considerably lessened the frequency of my falls (and I still somehow managed to fall out of my wheelchair and onto all fours in recent years.)

I've written about falling before - documenting the details of one of my more spectacular falls - but even in this post, it's clear that trauma plays a role in my reaction.

And I think it's worth talking more about.

Tara mentioned wanting to weigh in on the subject, via a blog post.

***

[Tonia, looking exhausted in a yellow shirt at summer school, where she took many falls, just before starting second grade.]

***

How do things like PT culture and medical trauma impact our ability to discern whether or not we are actually hurt or in pain when we fall?

TONIA:  Medical trauma means that I struggle to tell when I am really hurt.  Even when I fall, pain is secondary.  It activates my trauma, first and foremost as a sudden, jarring event to my body that I cannot control.

It’s similar to surgery in that way.  And as someone who has endured at least three major surgeries without anesthetic as a baby and 13 surgeries at once as a ten year old, falling, in comparison can feel so minor.

That’s why, as a 13-year-old, I endured a broken tailbone in silence.  It’s why, in my 20’s when I was fallen on by a fully grown adult and likely needed medical attention, I soldiered on in silence or insisted I was fine, even as pain was ripping through me.  

Because it still, in no way, compared to the pain I was used to.

TARA:  I think that both PT culture and medical trauma fall under the umbrella of compliance culture. Compliance culture depends on disabled people being unobtrusive and making our needs (including our pain) as small as possible.

That is not to say that we do not feel pain. We do. However, our pain barometer is calibrated to an extreme degree. 

 With painful therapies, procedures and surgeries - all nonconsensual if you’re a disabled child - a part of your daily life, pain doesn’t register in the traditional way. We’re taught that these things are supposed to hurt and that they must be endured. After experiencing the pain of having muscles and bones cut, drilled into, rotated and stretched past the point of tolerance not just once, but over and over, the pain of scraped knees or palms may not register as traditionally painful.
 
Pain is not an alarm system for us, but something expected that we must tolerate. 

TONIA:  This last sentence, though.  That really sums it up!

***

How does being raised in an abusive environment and around emotional blackmail influence our response to falling?

TARA: I don’t know how much of it is being raised in an abusive environment, per se, as much as internalizing the idea that nondisabled people’s comfort is paramount. Sometimes, nondisabled people’s comfort can ensure our safety, so I can definitely see the abuse dynamic in that context.

We become preoccupied with managing nondisabled people’s reactions to our falls. They can easily become centered, even while we are on the ground.

TONIA: Yes, our sense of obligation is not with ourselves and honoring our own bodies.  We instead prioritize the comfort of adults or caregivers around us.  Perhaps to be sure they're not overwhelmed and able to care for us?   

***

Would you also say a fear of getting in trouble contributes to our efforts to downplay it when we fall?

TARA: Not so much, in my case.

TONIA: Speaking for myself, yes.  I remember one spectacular fall (at the age pictured above) where my face hit three levels of metal shelving before I hit the ground.  Toys fell and our video gaming system was unplugged.  I was terrified of getting in trouble for making the mess, so I never told anyone I fell.

***

Where do guilt and / or toxic shame fit in?  Do they?

TONIA:  I think they do.  Because we're either told explicitly, "This is no big deal,” expected to just get up, or we are asked,  “Are you okay?" with the expectation that "You'd better say yes"  Not to mention, falling and experiencing an early lack of care and concern communicates "This is no big deal, just do something else."


TARA: Toxic shame and / or internalized ableism definitely plays into the effort to downplay or reassure others in the face of a fall. It is easy to feel like an inconvenience, or to play back any number of ableist words or phrases in those moments. I not only feel like I did the wrong thing. I feel like I am wrong

TONIA: I really agree with this, yes.  Falling is akin to failing sometimes.

***

How does alexythemia (the inability to recognize or describe one's own emotions, often linked to trauma) contribute to our reaction when we fall?

TONIA:  It makes it really hard to adequately answer whether we are okay or not - not to mention the other factors - explored above.

TARA: For me, when people ask me if I am okay after a fall, the script I follow is to say “Yes.” For all of the reasons I’ve previously mentioned. 

I translate, “Are you okay?” to “Are you able to stand / move?” And so, the answer has always been yes. 

I don’t know what is being measured when someone asks if I’m okay. Emotional distress? Physical pain? The threshold for both is unusually high, due to a lifetime of ableism and nonconsensual medical procedures.

***

It’s been mentioned that specific questions may help us discern if we are okay or not, post-fall.  What are some questions that might help us discern whether or not we are really okay?

TONIA: Maybe factual questions?  

A friend suggested: “Does anything hurt?”  “Are you bleeding?”  “Do you feel dizzy?”

I also think that reassurance that it’s okay if we are not okay would help us feel safe enough to eventually admit if we figure out we are not.

TARA: At this point, I don’t know if I could recondition myself to recalibrate okayness. I do know that what helps me is being around other disabled people who know culturally what it’s like to fall - what it means, what it brings up, what it jars loose. Having community in or after those moments is priceless.

TONIA: Yes!  The connection to community during / after a fall is so important!


***

Don't forget to connect on Facebook / Twitter / Instagram