The Unexpected

653 words

5 minute read

One of my biggest trauma triggers is the unexpected.

We've been quarantining since last March.  Everything in life is pretty predictable.

Except my writing - or more aptly - others' responses to my writing.  

My brain is pretty much set to Hope for the Best, But Prepare for the Worst most of the time. But there are times, when I dare to get excited about things.

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Last year when I posted a specific chapter to my middle grade novel.  I was so excited, you guys.

Like...I don't get this excited.

But I was like, "I don't see this kind of honest representation anywhere.  I'm so excited to validate my friends / communities' experiences."

I posted it, and got three messages about how upsetting the content was, and could I put a trigger warning on it for ableism?

(I guess that's what happens when you grow up like I did.  I didn't necessarily think about cousins being mean to each other - and yes, ableist - as anything that could use a trigger warning.  Not when I'm used to so much worse.)

Stuff like that is hard.  Like, really hard.  Because I go from, "I can't wait to share this" to "I've crushed my friends.  I've harmed my community."

It devastated me.

Because, at my core, it made me feel like I could not trust my own judgment.

[Image: A blue coffee cup is on its side.  Coffee is spilled all over paperwork, a pair of glasses, and perilously close to a calculator.]

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My recent post about taking an autism self-diagnosis test has proven to be another one of those things: I was like "Okay.  This makes sense.  So many things are clicking for me."  I was nervous, but I was happy.  Excited to share the good news.

In response, a couple friends cautioned me about tests like these.

I came away feeling doubted.  Feeling wrong.  Feeling like I should have never shared publicly about my discovery about myself in the first place.

Again, I felt devastated.

When I post writing - whether a blog post or a story, or whatever - it's a huge act of trust.  It's a leap I'm not used to taking because I've spent so much of my life unable to be honest at all.

And again, usually, I gird myself for negative responses.  So I'm ready if or when they come.  But I didn't this time.

Things that are "givens" for most people are not for me.  I don't assume I am believed.  I don't assume people see my thoughts as valid.  If people say nothing, I'm no worse for wear.  But if you understand, if you believe me, if you think what I'm saying is valid, I need that to be explicitly stated.

(If you can.  If you can't?  Again, saying nothing means I am no worse for wear.)

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Twenty four hours or so on the other side of the latest trigger, I'm back in my rational brain.

So let me say this (to myself): It is always within another person's rights to assert a boundary.  If they need a trigger warning, they are alerting you to something they need and trusting that you will take care of it, and prioritize their safety.

Also, self: It is completely within your friends' purview to extend caution.  It's because they care about you.  If you feel triggered, please, for the love of Pete, try to ask a question: "Did you mean that you don't believe me?"  "Did you mean that I did something wrong?"

(I know asking questions is hard on your best day, not to mention when you are super triggered, but we are all about improvement and awareness, right?)

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To those of you reading - especially those of you who I hurt in the midst of my trauma spiral - I'm sorry.  

I'm learning.

I will do better next time.

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Autistic?

732 words

6 minute read

In January of 2020, I took a quiz.  

The results of the quiz said that I was "very likely neurodivergent."

It was a revelation.

So much of my life suddenly made sense.  I also subsequently learned that CP is considered neurodivergence in and of itself.  I've taken self-made "Are You Autistic" quizzes on Twitter but as there was no way to officially come away with a score, I was hesitant to take these results as anything conclusive.

So, tonight, Tara and I found ourselves in a conversation in a majority Autistic space, discussing the concept of softening language.  Later, I asked Tara what she was up to.  (We do this often, as our computers don't face each other.)

She mentioned she was taking an online quiz "just to see" if she was Autistic.  As is the case with twins, and thinking about my "very likely neurodivergent" quiz results previously, I also took the quiz.

Neurotypical females test 15 on average.

32 - 50 indicates one is very likely Autistic.

I scored a 32.

[Image: The rainbow infinity symbol]

On one hand, similar to the neurodivergent test last year, this one provides a lot of clarity for me.  It makes things click.  

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Why I don't just like my routines, but need them.  

Once on a vacation out of the country, Tara and I were so desperate for routines that we made one even in this new place.  After lunch, we'd retire to our room and read or watch TV for several hours, ignoring the beach and the sensory overload.  

Our younger sibling noticed and asked us, "What are you doing?"  

Tara said, "Just our regular afternoon routine."  

After that, we were asked, daily, "Can I join you for routine?"

And two became three, as we watched High School Musical and Willow in Spanish.

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My years-long reliance on scripting.  

At twelve, we dyed Easter eggs at our grandma's house.  She even had a way to write on the eggs, so that words or pictures would show up once the dye dried.

I wrote on one egg, "HI, I'M BIG!" which I thought was hilarious, as I'd noticed a classmate at school had done a drawing of a very grown up Big Bird, who announced "HI, I'M BIG!" in a speech bubble above his head.

Tara and I loved it.

No one else really got it.

Related: Not All Disabilities Are Visible

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My inability to do small talk.

I had gotten to the point, in recent years, where I honestly could not make small talk.  Like at all.  It felt horribly fake and forced.  Especially when it didn't lead anywhere.  When there was no depth.

I'd ask "Has anyone watched Grey's Anatomy?" and even though they were talking about their favorite shows, the conversation would stop dead.  Someone would say, "No," and then it would go on as if I had not spoken.

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Sensory struggles.

I have always struggled to eat certain foods, not because of taste but texture.  Warm fruit with a skin on it.  Liver.  Yogurt with chunks of fruit.  Jelly.  Warm onions.  Warm celery. Raisins (in anything.)  Chunks of tomatoes - especially warm ones.  Just no thank you.

I wear all my clothes inside out, because tags are hideous.

Getting my hair brushed was painful as a child.  (With a specific brush, it's not so bad.)

It's really hard for me to discern whether or not I'm not or cold.  I just "don't feel good" and my skin crawls.

Fire alarms are hideous.

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Wide discrepancy in academics.

As a high school sophomore, I tested four years ahead in reading and writing.  But four years behind in math.  

I still struggle with even basic subtraction.

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I love knowing what to expect.

So, I eat basically the same thing (with a few variations.)

I struggle when plans change, especially last minute.

Spontaneity (even being put on the spot to answer a question) can make me panic.

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There's all this, and more...and yet...I still feel somehow like a fraud.  Without an official diagnosis (and, I'll be honest, no desire to go out and get one in These Times) I find that I'm not really sure what to do now.

Do I fit in?

Am I Autistic enough to call myself Autistic?

I'm full of doubt...but also somehow...full of peace.

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7 of My Favorite Disabled People From Reality TV & Limited Series

102 words

1 minute read

TW: GIF POST

There are plenty of real actual human beings who have influenced me over the years just by being visible:

1.  NADIYA HUSSAIN - GREAT BRITISH BAKING SHOW (2015)

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2. CRISTINA SANZ - BORN THIS WAY (2016)

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3. ALI STROKER - THE GLEE PROJECT (2012)

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4. ARLENA TWIGG (Portrayed by Erika Flores) - SWITCHED AT BIRTH (1991)

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5. BRIONY MAY WILLIAMS - GREAT BRITISH BAKING SHOW (2018)

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6. KOREY WISE (Portrayed by Jharrel Jerome) - WHEN THEY SEE US (2019)

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7. PEDRO ZAMORA - THE REAL WORLD: SAN FRANCISCO (1994)

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10 Ways a Disabled / Neurodivergent Person May Show Love

414 words

3 minute read

Disabled / neurodivergent people can and do show our love for others in all kinds of ways.  Just because we may not be all about giving or receiving love, eye contact, or any of the loads of other ways nondisabled / neurotypical people show love, it does not mean we are not showing it.  And it does not mean we're not feeling it.

Here are 10 ways we might be showing love right this minute:

[Image: A newborn baby and an older sibling lie near each other.]

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1. Adapting for you / accommodating you

2.  Waiting for you

3.  Sharing our interests with you

4.  Scripting with you

5. Listening

6. Checking in with you

7. Inviting you to join us in what we are doing

8. Making sure you have food

9. Doing an interest near you

10. Creating something and sharing it with you

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CP often comes with sensory difficulties.  Having CP means being neurodivergent.

Related:  International Day of People with Disabilities: Not All Disabilities Are Visible

A hug when we don't expect one can trigger our startle reflex or throw off our balance. Try saying, "Do you want a hug?" before you go in for one. And / or hug at predictable times and when we already feels secure and not at risk of tipping over or being startled.   Unexpected hugs and kisses are surprising and surprises feel scary to us.

Also, many of us with CP have spent a long time in hospitals, and our attachment may be impacted. Remember, there is more than one way to give and receive love. Even those of us with attachment trauma want love, it just feels like a lot sometimes.

Try smaller steps: Smile at us. Smile when you help us.  Show interest in what we love. Ask us questions about it. When we talk to you / communicate with you, show interest in what we’re saying.

Know if we come to you to show you something, or if we call out to you? That takes trust. If we come and sit near you that could mean we want to share space with you.

Trust that those of us with CP want to connect with you just as much as you do with them, it just may not look the same way it does with nondisabled / neurotypical people.

So, be on the lookout for those 10 ways and know that there are so many more things we do that communicate love.

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Disabled People, Our Right to Life Exists Even When We're 'Noncompliant'

829 words

6 minute read

Parents often want to talk about how a disabled child enriches their lives.  

Their comments section on social media swells with comments echoing how doctors could never have told them how "happy" their child would be.  How complimentary the kid might be to their parents.  Or how many life lessons a child may have taught their parent just by existing.

On the surface, this seems harmless.

Nice, even.

But, is it?

If you squint, it looks a lot like a nondisabled parent justifying a disabled child's existence because we make our parents feel good.

Related:  Let's Talk About the Effects of Forcing Gratitude

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Compliance Culture:

Disabled people are often forced into a culture of compliance from the time we are babies.  Unlike our nondisabled peers, professionals and parents continue to exert power over us - to demand compliance - even into adulthood.

Because of the power differential, we have no choice but to comply.  If we don't, we are threatened.  Sometimes with surgery, sometimes with an imminent loss of insurance - if we do not do what is demanded of us.

[Tonia, posing with Anger from Inside out, making an angry face in her Not Here to Please You shirt.]

Many of us also know that the most dangerous place for us to exist is, in fact, at home.  Nondisabled parents were still being advised to institutionalize their disabled babies the same year the ADA was passed (1990).  Kim Sauder has a must-read thread on deinstitutionalization.  Read it here.

The increased risk of abuse Sauder references in her thread is all too real for those of us who grow up disabled in nondisabled households.  

That means that often the people-pleasing nondisabled parents often praise in their disabled kids could easily be a fawn response to trauma.  A way (often the only way) we can re-establish safety.  

They are praising us for our response to trauma (often at their own hands.)

Performative Emotions as Protection:

In late 2019, I wrote:

As disabled people we are often expected to engage in performative emotions.  Especially happiness.  From the time I was very young, nondisabled adults commended me for my "positive attitude."  I was "an inspiration," for just...being happy.

Related: What is Performative Niceness and How Does It Relate to Disability?

I learned early that my happiness was not just mine.  It belonged to every nondisabled person I encountered.  And more than that?  It did not matter if my happiness was genuine, or reflexive.

It didn't matter if my smile was masking the hurt I felt when family members teased me, mocked me, said seeing "only the top part of [me]" with no adaptive equipment visible was "better."

And it didn't matter if I was genuinely proud of myself for mastering a skill I spent years working on.  My happiness was theirs for the claiming.  My victory was theirs, too.

What people don't speak of often, though, is how smiling is often our only defense.  In dangerous situations?  Encountering gross ableism?  It's safer to smile than it is to call that person out.

So many nondisabled people want to claim our happiness.  They want to absorb it because watching us be happy means they can feel extra good about their own lives.  But so very often, they refuse to take responsibility for the very real ways they harm us.

They don't want to examine the reality that many of us are happy in our disabled lives & that a great majority of our strife comes from [nondisabled] people who ask that we smile on command for the crumbs of agency, of access, of autonomy we're given as if they're a favor and not our right.

So many just don't care if a smile is genuine or not.  My family actively discouraged my genuine smile, because my CP showed too obviously in my features.  I was told to "smile nice" and "put my chin down," over and over.  Never mind that my biggest smile was my happiest.

But it didn't matter.  The bottom line was still the same: my happiness was about their comfort.  And they weren't comfortable with me looking too disabled.  So, assimilate.  Smile on command.  Smile to keep yourself safe.  Why aren't you smiling?

I've spent a lifetime smiling for others.  But I don't owe them my happiness.  I have fought and struggled the majority of my life to get a taste of genuine happiness.  It is not theirs to claim.  If you have to smile to survive, I get it.  I've done it.

Know that you have the right to be genuinely happy, to smile, or not.  You have a right to all your feelings, even if they don't make those around you feel good.  You're enough when you smile.  You're enough when you don't.  You're human.  You matter.  So smile.  Or don't.

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Despite the pervasiveness of nondisabled people not so subtlely justifying our right to life because we are compliant, our lives have value.

We have value because we exist.

We have a right to life because we are human.

Fully and imperfectly human.

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Want to Show Love to a Disabled Person? Provide Access

936 words

7 minute read

Over the summer, I got a message from a nondisabled parent about creating accessible childcare (with the hope that disabled adults could also work there.)  This parent wanted to know what access things they had possibly overlooked.

This list in no way covers every single access need, but it is a place to start.  So, if you are curious about making a space accessible for a disabled people in your life, read on...and know that providing thoughtful access goes a long way toward letting us know we belong and are loved and welcomed in your space (whether it's a childcare facility or your house.)

Related: When Accessing Basic Needs Is Anything But Basic

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Install Thin Carpet and Eliminate Decorative Rugs Altogether - These make access really tough.  While Target / school style floors are great for chair users, there’s often a cleanser issue where there’s slippery film left behind which makes walking with crutches / unassisted but disabled dangerous.  (Falling hazard.)

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Open Floor Plan in All Locations -  Make sure there is plenty of space for kids with adaptive equipment to navigate.

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Accessible Cubbies and Coat Hooks - Make sure all kids have access to a safe place to store their belongings.

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Have Places at Tables Where Regular Chairs are Removed - This lets wheelchair users feel welcome / like we belong there / are wanted.

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Accessible Quiet Corner - (Not used for punishment.) Say a kid needs to chill for a bit.  Have noise canceling headphones, lowered light etc for when kids need to decompress.

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Sensory Toys - (Search them on Amazon) and plenty of cuddly blankets (or Sensory Rooms)

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Make Using Captions on Media Your Default - Captioning not only helps d/Deaf and HoH folx but it also benefits those with auditory processing difficulties.

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Make Sure the Room is Warm Enough - People with disabilities can have trouble maintaining temperature.  We can feel too cold / too warm easily.

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Keep The Toys Low / Accessible - Believe it or not I still remember nursery school (age 2) and only being able to reach certain toys / toys on the lowest shelf.  This way, every kid can reach them.  Same for books, etc.

[Image: Tonia in nursery school in a pink shirt, looking exhausted.]

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Accessible Seating - This goes for all the areas but especially for the babies / littles make sure they’re not in one place all the time.  Those Bumbo chairs are pretty supportive and work well (as opposed to regular chairs / booster chairs.  *Keep differences minimal.  If you’ve got kids in Bumbo / booster seats.  Have abled kids on the floor around them, not in regular chairs towering over them.

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Safe People Who Are Happy to Help Kids Play - Young kids need a lot of help, especially disabled kids.  Kids, even babies, pick up if they are seen as some kind of pain in your butt.  

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Remember Daycare is Not Therapy - If playing outside counts as exercise for the abled kids, it counts as exercise for the disabled kids, too.  We use 3-5 times more energy to move, so we are always exerting ourselves.

Related: 2020 Summer Series: CP and Therapy

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Have Inside Play / Outside Play Options or Days - Some kids with disabilities cannot go out when it’s cold (cold varies from kid to kid) because of immune issues or temperature regulation difficulties.  

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Prioritize Shoveling / Salting If You Live Where It’s Cold - People with disabilities need to be able to safely get in and out of the building no matter the weather.

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Private Accessible Changing Table (Big Enough for Adults) in Restrooms - Often, older kids and adults with disabilities don’t have access to a place to have their bathroom needs seen to, and have to be changed on the floor of restrooms.  This is so dehumanizing.

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Make Sure Stalls / Bathrooms are Actually Accessible - Where possible ask wheelchair users etc to navigate it and be open to feedback.  Make sure sinks are low enough (not just one) with enough open space beneath to accommodate a wheelchair.

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Realize Incontinence Is a Thing That Might Happen - Be prepared and don’t punish or shame a kid (or disabled staff member) for this.

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Rethink The Height on Those Kitchen Surfaces - If you want to be open to disabled adults working in your facility, please make sure they can 100% access food and the kitchen!  Lower surfaces work for everyone.  (Open space beneath counters to accommodate chairs.)  If necessary you can gate the area or something so that littles can’t access where there are sharp implements / a hot stove.

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Smooth Pavement / Rubber Treated Surfaces Outdoors - Pushing a wheelchair is not the same thing as pushing a stroller or a toy.  We struggle to navigate on compact crush, mulch, grass, dirt and gravel.

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It's human to miss things.  If a disabled person comes to you with an having faced an access barrier in your space (or even with your content) realize this is a big deal.  We are trusting you.  Realize if we are coming to you at all, we have likely experienced physical or cognitive exhaustion. (Perhaps both.)  

We Need You To:

1) Realize we have been harmed.

2) Ask if we are okay.

3) Apologize.

4) Be open to feedback when we are able to give it and / or research on your own a way to correct the barrier.

5) Actually correct the barrier.

These things will begin to establish you as a safe person in a disabled person's circle.

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When a Note About a Classmate's Ernie Doll Held Us Together

885 words

7 minute read

The idea of a single note or card I've kept due to their significance?  It's a little silly...

It's silly if you know me.  If you know that I keep every note.  Because every time someone thinks of me, and gives that actual breadth and space on paper...(or these days...on a white board or a Google Doc...) that matters to me.

Tara and I have been exchanging notes and letters to each other for years.  Ever since we could hold pencils.  Ever since I could first print the words: To Tara: I Love You, there have been notes.  We even came up with a secret code in sixth grade, and we wrote all of our letters to each other in that code for the entire year.

We have 3-ring binders full of letters.  Ziploc baggies full of lunch notes I sent to work with Tara.  I save pictures of the notes she writes me on the white board that I particularly love. 

But there is one note that stands out when I think of this notion.  One note that held us together at a time when we desperately needed it.

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In high school, Tara and I kept in touch via passing notes in the hall when we saw each other.  (Only by the end of our senior year did a few well-off classmates have cell phones - the kind that solely called.  There was no texting.)  So, we did our in-person passing of the note thing.  Particularly in junior year, when Tara and I had the same teacher in back-to-back hours.  

We'd say "hey," to each other.  But she'd also put a note in my hand and it was like subtext.  We exchanged greetings but the notes had the substance - at least, what substance we could safely share. (I wrote less often, and usually handed mine off to her once we were home.)

On the Tuesday before winter break, Tara handed me this.

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[Image: The top right corner of notebook paper.  The date: 12-16-97 can be seen in blue ink]

The note started out like they all did.  Casually:

"Geez I haven't written a note to you in so long...but it's not like I never see you!"

We had no way of knowing that in 48 hours, everything would change.  And that once it did?  Our dynamic would change, too.

I shared in our review of The Fosters 4x13 "Cruel and Unusual:

I was told not to talk about school with [Tara] (because she was worried about having not been able to finish classwork, and thinking her teacher would be mad at her.)  But at 16, our whole lives were focused on school.  We did not have big social lives so most of our interaction with friends was at school.  To have such a huge limit placed on what we could discuss was beyond difficult.  Especially because she knew I wasn’t being honest with her.  She could always tell.  And it bugged her.  (Rightly so!)  

Prior to this, we told each other absolutely everything, so when she was recovering in the hospital, to have to resort to sanitized half-truths, when I really wanted to say sometimes: “You know what?  This friend really sucks right now,” was tough...

It was this note, though, that helped us cope.  

At a time when home was always stressful (to put it mildly) and now discussing school was off-limits, too.  But this note was of the lighthearted type.  In French, Tara's class had been assigned to write about a childhood toy.

One classmate memorably shared about his Ernie doll and how sad he was when it got lost in some bushes, and how much he loved this toy as a child.

Tara memorialized these sweet few sentences (in their original French - and then - since I took Spanish - she translated them to English.)

I kept it in the front pocket of my backpack, which was always on the back of my wheelchair.  I took my wheelchair to the hospital to visit Tara each day of winter break.

When she was not sleeping, or doing therapy, she asked:

"What about [Classmate's] Ernie doll?" 

And I read the passage to her.  (The English passage, as I could not pronounce the French.)

I could quote parts of the note by memory, which was good, because there was never a time Tara didn't want to hear about the Ernie doll...and there was never a time I didn't want to tell her.

When I left the hospital at nights, I read the note, and reread it, taking as much comfort in it - in a classmate's safe memory of a childhood toy - and more?  Of the joy it brought my sister when she told the story...and later...when she heard it.

There was a time I was convinced I had lost the note.  And it devastated me.  But we have since collected every single one and saved them in a scrapbook.

So that, even though our classmate's Ernie doll remains lost, the documentation of our classmate's love for his favorite toy?  The safety, and the way to connect to each other?

That remains.

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Has a note or card from someone you love helped see you through a difficult time?  Let me know in the comments.

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