Trick-or -Treating in the 1991 Halloween Blizzard

603 words

5 minute read

The 1991 Halloween blizzard hit the upper-Midwest when I was ten years old.  It's legendary if you live anywhere the blizzard hit.  Each Halloween, I can count on at least one reference to it from fellow Midwesterners.

At ten, though, my main concern was getting to go Trick-or-Treating.  We couldn't not go.  Trick-or-Treating was Halloween as far as my siblings and I were concerned.  We were used to bundling up.  Halloween photos from years past show us seamlessly adapting to wearing costumes outside our winter jackets, so we could stay warm and Trick-or-Treat simultaneously.


Related:  Making Halloween Fun and Inclusive for Kids with Disabilities


But this was a different matter.

My sister's fairy costume (which I was wearing that year) was not made to don over a jacket.  It was appropriate for a summer night out, not a trek through treacherous icy, snowy conditions in the dark, on a quest to get candy.

[Image: As I can find no photos of Halloween 1991, here's one from the previous year, where Tara is dressed in her fairy costume and I'm dressed in my most favorite costume ever.  I loved my angel costume, but felt conflicted, even as I stood posing for this picture, because I had never seen an angel with crutches before.  I felt wrong in the costume, and therefore had no qualms about switching the following year, and dressing as a fairy myself.]

But we had no choice.  If we wanted to Trick-or-Treat, we had to bundle up.  So it was winter jackets, snowpants, and boots for all.  No costumes visible.

I was carried, piggyback, to the houses.  Freezing and wishing for the experience to be over as soon as possible so Tara and I and our two younger brothers could count and sort our candy (after it was checked for various unsafe items, as was the custom in the '90s...)

We made it home and counted up the candy we'd collected.  I was always on the lookout for Reese's Peanut Butter Cups - regular sized.  No one liked Almond Joys or Mounds bars, but somehow all of us ended up with some of those.  The next few days were filled with the tradition us kids had: where we bargained with each other in order to stock up on candy we favored.  (Tara liked Starbursts.  But they weren't my favorite, for example...so she'd offer me something chocolate in exchange.)

That was my last year Trick-or-Treating - less than two months before major surgery.  I've spent the last few years wondering if we were discouraged from Trick-or-Treating anymore because of all the work it took to get me from house to house, especially the year of the blizzard.

Now that I'm an adult, I'm shocked hearing about kids who are allowed to Trick-or-Treat into high school and beyond.  When our first year of middle school, we were told we were too old.  We had to stay home and hand out candy instead.

Halloweens now are lowkey and festive in their own way.  I'll most likely find my orange jack-o-lantern shirt, or the one that reads IT'S JUST A BUNCH OF HOCUS POCUS (because of course, we must watch Hocus Pocus on Halloween...)

We don't have to worry about not getting candy, either, as we have our own.  Kept in its very own drawer in our fridge, for optimal freshness.  (We don't have a vegetable drawer, we have a chocolate drawer.  So much better.)

Happy Halloween.

P.S.  We totally do eat vegetables by the way.  We just don't keep them in the chocolate drawer  ;)

***

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These Are a Few of My Favorite Calming Things

515 words

4 minute read

In case you missed it, October 10th was World Mental Health Day.

As the years have passed, I've come to the realization that I have trauma.  In fact, if you've been around for a while, you probably picked up on the fact that I have various mental health things.  There are times of year that are more difficult than others.  Specifically, the winter months coming up.  (November and December.)  So I thought it would be good to create a list of positive coping things / things we use around here to regulate and self-soothe:

1.  Music / Podcasts - We use a lot of instrumental music  to calm down when the trauma's especially active.  To that end, I've made a Calming Playlist on Spotify.  I'd also be remiss if I did not mention Childhood with Chanel and Tiffany - a totally soothing podcast that is literally just two sisters talking and sharing memories about their childhood.

2. Stuffed Animals / Other Soft Things - There is no age limit on comfort and if stuffed animals make you feel safe, I say cuddle the crap out of them.  (Also, blankets.  Yum.)

3.  Whatever Gives You (Safe) Sensory Joy - bubble wrap, Thinking Putty, glitter bottles, slime or light up stress balls (TW flashing lights at the stress ball link.)  Use any or all of it to your heart's content.

4.  Aromatherapy -  We're very big fans of essential oils and recently have discovered the joy of fragrance oils.  But we also have a deep and abiding love for candles.  Know scents trigger you, and err on the side of ones you find grounding and calming.

5. Coloring or Drawing - Whether you have to color yourself some protecting fish with scented Mr. Sketch markers or actually sketch out your trauma during Inktober, creative outlets are so freeing!

6.  Writing - I do all kinds of writing to process trauma, anxiety, depression, etc.  Aside from blogging, I write poetry and disabled fiction to help.  And it does help.

7. Read Notes From Safe People - It might just be a Tara-and-me thing but we have always written each other notes.  When we can't be with each other, and things are hard?  Reading those notes helps.

8.  Take Care of Your Inner Child / Children - This may sound really weird, especially if you've never done it before, but it is so affirming.  Practice checking in with your inner child.  Ask them how old they are.  Or what they like to play.  Our inner children love to watch movies.

9.  Talk / Process With Safe People - In a world where ableism often comes at us from every side, it can feel daunting to go out in the world, where so much of basic interacting feels loaded.  That's why it's so important to touch base with your safe people when possible.  (Luckily, I live with mine, so she gets to hear all about my place blindness nightmares.)

10. Baking / Cooking / Creating Food or Beverages - We have a strong love for baking cookies and also homemade hot chocolate.

***

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Books I've Read in 2020: 96-100

833 words

6 minute read

 

96.

Genre: Middle Grade Fiction

Disability Representation: Yes, diabetes

Rating: 3/4 (Really liked it!)

Excerpt of GoodReads Summary: When Stoneybrook is paralyzed by a massive blizzard, Dawn and her mother get stranded at the airport, Jessi is snowed in at her dance school, and Kristy's boyfriend gets stuck overnight at her house. Claudia, Mary Anne and Mallory are all baby-sitting, but no one has heard from Stacey--could she be trapped somewhere on the way back from the mall?

What I Thought: It's been years since I read this, and I found myself enjoying it almost as much as I had as a teenager.  Particularly, reading about Stacey stranded in the car, Dawn at the airport and Mary Anne and Mal at her house were super interesting.  Glad I reread this one!

***

97.

Genre: Children's Fiction

Disability Representation: No.

Rating: 1/4 (It was OK)

Excerpt of GoodReads Summary: Meet the World’s Funniest Kindergartner—Junie B. Jones! February 14—Valentime’s Day, as Junie B. calls it—is just around the corner. Junie B. can’t wait to see all the valentimes she’ll get. But she never expected a big, mushy card from a secret admirer! Who is this secret mystery guy, anyway? Junie B. is determined to find out.

What I Thought: I wasn't a super fan of this one, especially the notion being perpetuated (that if someone is mean to you, that means they like you.)  It gives kids entirely unhealthy ideas about relationships.  So, while I love Junie B. I did not love this book.

***

98.

Genre: Children's Fiction

Disability Representation: No.

Rating: 2/4 (I liked it!)

Excerpt of GoodReads Summary: It's almost the end of the school year, and Room Nine is taking a field trip to a farm! There's lots of fun farm stuff there. Like a real actual barn. And a real actual farmer. There's even real alive animals you can pet! Only, where's the gift shop? That's what Junie B. Jones would like to know. Surely no one would want Junie B. to go home empty-handed. . . . 

What I Thought: This one was pretty cute.  I liked that Mrs. and Farmer Flores were on hand to help explain things to Junie B. and ease her fears.

***

99.

Genre: Young Adult

Disability Representation: Yes (trauma, addiction)

Rating: 4/4 Wheels (LOVED it!)

Excerpt of GoodReads Summary:  Sixteen-year-old Bri wants to be one of the greatest rappers of all time. Or at least win her first battle. As the daughter of an underground hip hop legend who died right before he hit big, Bri’s got massive shoes to fill.

But it’s hard to get your come up when you’re labeled a hoodlum at school, and your fridge at home is empty after your mom loses her job. So Bri pours her anger and frustration into her first song, which goes viral . . . for all the wrong reasons.

What I Thought: I've been eagerly awaiting the opportunity to read this one, and I LOVE that it's set in the same universe as The Hate U Give.  I really enjoyed this book and I felt like Bri was a rare character that "felt" 16.  She made mistakes.  Her first attempts at things were not automatic successes.  She still needed guidance and support from adults in her world (and she got it.)  

I also really appreciated how trauma and addiction were included in this book, as part of certain character's lives, but not as things that necessarily detracted from who they were as people, or overtook them fully.  My favorite thing about this book was the family relationships and how they healed and grew - and how the adults were tuned into Bri's world and what she needed.

My only caveat is a small one - in that I feel like the book could have ended sooner?  The chapter before the final chapter and the epilogue "felt" very much like an ending to me and very satisfying.

But I did love it, and definitely recommend it!

***

100.

Genre: Children's Fiction

Disability Representation: No.

Rating: 4/4 (LOVED it!)

Excerpt of GoodReads Summary: Afternoon kindergarten is having a field day, and Junie B. Jones is team captain! Only, here's the problem. Room Eight keeps on winning too many events. And so how will Room Nine ever become the kindergarten champions? As Captain Field Day, will Junie B. find a way to lead her team to victory? Or will it be up to someone else to save the day?

What I Thought: I loved the heck out of this book.  What an unexpectedly lovely ending.  (And who DOESN'T love that a character exists in this book named Strong Frankie...?)  I mean, it's pretty dang amazing.  I loved Junie B. learning about captaining and how Mrs. had to model being a good leader, pretty much beginning to end because the kids are five and they don't know how to do things yet.  Such an enjoyable one.  I teared up at the end.

***

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When a Stranger Asked: "What Happened to Make You Handicapped?"

403 words

3 minute read

Back in June of 2016, Tara and I went shopping (to avoid the annual fire alarm testing - as we do - because Startle Reflex and fire alarms don't mix.

"Hey...  Look what's right there," Tara says, as we approach the book display.

I know, by the tone of her voice, it isn't something good.  She points it out - because Place Blindness.  And suddenly, I know why she's not happy.

What she's spotted is a certain book that's quite popular at this time.  One that is strongly celebrated despite its reliance on a harmful trope that people are better off dead than disabled.

"Please take a picture of me holding this," I beg.

"Oh, can I?" Tara asks, happy to document the hideousness we found.

[Image is: The picture Tara took.  I'm holding the book Me Before You in my hands, not smiling]

We continue to browse.  As we do so, I can feel a man unabashedly staring at me as I talk to Tara about another book.  He's not making a secret out of it.  He's STARING.  No doubt about it, moving-to-get-a-better-view, staring.

I ignore him.  (If I get riled up over every person who stares at me in public, I'd have no energy for regular life...)

Then, he speaks:

"Excuse me?  Miss?"

(Here we go, I think, wary, and brace myself.)  "Yes?" I ask.

"What happened to make you handicapped?"

There's a list of ways I want to respond:

1) Make the face at him that I am making in the picture above.  (I'm unsmiling.  It's the epitome of a dubious, "Really?" face.)

2) Tell him, "THAT IS NOT YOUR BUSINESS!"

What actually comes out of my mouth is: "That's...not something I'm talking about right now!"

Then, Tara pushes me away from him, fast.

"I'm sorry for bothering you!" the man calls at our backs.

But it's like, no.  Obviously you're not if you're going to stare at me like it's your JOB and then inquire about my medical history in the rudest way possible.

No, thank you.

Tara and I rant on the way home.  It helps some.

With time and distance, I find I'm proud of myself.  This instance is the first time in my adult life where I did not feel compelled to answer a stranger's invasive question for my own safety.

Growth often happens when we're not looking.

***

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I'm a Disabled Adoptee: Here's Why That Matters

642 words

5 minute read

My adoption day is a complete mystery.  The only day I have connected to my adoption is the day I found out.

October 11th.

I have known I was adopted since I was eleven years old.

I remember that night vividly.    The finding out when I never knew there was anything to find out.  

***

Here's what I know:

There is a blank spot on my original birth certificate.  I was adopted around the age of three.  My parents were married in October of that year.  Chances are, we were also adopted around that time.  I remember snatches of the adoption, though I had no context for what it was.  (A man in a brown room, sitting behind a giant brown desk, saying my first name and my parents' new last name.)  

I know that by age four, I was obsessed with the fact that my sister, my new baby brother and I all shared a last name.  I spelled it proudly.  

I know that the courthouse was a landmark in my hometown that we shouted out with the same fondness as "the meat market!"  (Not because we loved meat, or court, but because it let us know we were back home.  Back near our grandparents and great grandparents.)

***

I know the comments have stayed with me:

"I would have named you Tara and Sara."

"I would have rather gotten fishing gear..."

"You take your daughters and I'll take my sons!"

"I was young and stupid and I made a mistake."

"[Our brother's] adopted!"

"You know, [random unknown relative] is also adopted..."

"So, do you call your dad, Dad?"

"They're not really my sisters.  They're my step-sisters.  Mom and Dad explained it all to me."

***

But it was never explained to me.  To us.

We were left to fill in the blanks ourselves.

"He didn't want kids" easily translated to "He didn't want us."

"I can't afford to keep all of you myself," translated to, "Be quiet, even if things aren't okay.  If you're adopted, that's a favor so great that it entitles the adoptive parent to treat the child however they want."  (I spent the next nine years of my life - until I was 20 - believing this was true.)

So, I was left with the certainty that I (specifically) was that mistake.  I knew when we were born, no one was expecting twins.  I was second-born.  I was unexpected.  I didn't even have a name chosen for me until days later.  

At eleven years old, I was left with only a sense of "This makes sense."

The ableism I experienced daily suddenly had a reason.  Well, why would someone love me or want me if I didn't even belong to them?  My parents married because they loved each other...we came with that.  We were a package deal.  An obligation that only a saint would take on.  Two disabled toddlers.

***

Adoption is trauma, because we don't choose it.

Because children cannot consent to what adults in our world decide.

[Tonia and Tara, 3 years old, pictured in October, around the time of our adoption.  My smile is stiff.  Tara's is uncomfortable.]

My feelings are complicated.  My adoption shrouded in secrets and shame.  I still have more questions than answers.  I'll always have questions.  There are pieces of my history I'm resigned to just never knowing.

Because I find myself grateful, regardless.  Grateful to know and love my brothers and cousins.  Grateful to have had the basics I had.  But that gratefulness stems from a gut-level fear.

A knowing just where we could be, had this one person not come along and fallen in love with our biological parent.

It's a lot to carry.

There's a lot I'm not saying.

But I'm finally saying this much.

And it's about time.

***

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World CP Day 2020: Make Your Mark

569 words

4 minute read

I received an email recently, about World Cerebral Palsy Day.  This line, in particular, leapt out at me:

"People with Cerebral Palsy have mastered dealing with change, breaking down barriers and coming up with creative solutions their whole lives."

So how do we make our mark, in a society so focused on being noticed, and productive and a lot of things that those of us with disabilities usually...aren't able to be for one reason or another?

[A lit up sign reads: MAKE YOUR MARK]

***

I joked on a phone call recently that disabled people are made for quarantining.  Because it comes really naturally to me (and, I bet, for a lot of us.)  Also, with the majority staying at home for months, many previously inaccessible things have been made accessible now, which is helpful, if infuriating.

We are used to adapting.

So when Tara's job (in customer service at a grocery store) kept pressuring her to come back in the midst of the pandemic or quit, we knew some creative thought was in order.

While she was still on leave, we were thinking.

Then one day, she said, "You know, I know we try to avoid monetizing the help we give each other because it's just what we do for each other and it feels gross...  But how would you feel if I looked into becoming your PCA?"

I thought.  Then I said, "I'd feel good about it.  Like, not usually, but in the current state of things?   The bottom line is, I want you safe and alive.  This would allow you to work from home and would take a lot of unnecessary stress off of you."

"That's what I'm thinking, too," she said. "I just don't want you to think that I'm doing this because I think helping you is a burden.  It's not."

"I don't think that," I said.  "A big part of why I'm agreeing to this is because it protects you...and it protects all of us [disabled residents in our building, all high risk.]  And it allows us to keep quarantining."

"Right," Tara agreed.

***

That was months ago.  

We are no longer dealing with Tara being on unpaid leave for months at a time, relying on the generosity of friends who sent (and sent and sent) essentials our way when we really needed them.  (If you you're reading this, thank you!)

We got rid of cable, since our DVR / cable box quit working and we can't have anybody in to replace it.  Turns out, downsizing our cable is saving us $150 a month.  Which is a lot of money if you're us.  

That's not to say that we're taking money baths now.  It's that now I can afford new shoes for the first time in eight months (with CP, we need to replace them every three) and kitchen utensils, and warm clothes for winter.

And we know that being able to rely on each other - having friends who supported us when we could not - finding ways to cut costs - are privileges that not everyone has access to.

Still, I think a lot of disabled folx might agree that we make our mark by figuring out a way to bloom where we're planted, so to speak.

This is an unprecedented time, and we are all getting through it the best we can.

***

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When My Little Brother Asked: "Why Don't I Have Crutches Like You?"

478 words

4 minute read

It was 1998 and we were climbing the stairs together when it happened.

My youngest brother was around two years old - still young enough that a baby gate was installed at the top of our stairs - when I sent him ahead of me. As I ascended with the help of one crutch and the railing, I carried my other crutch, and it stuck out behind me, like an unintentional weapon.

I didn't want to accidentally injure my little brother if he followed behind me on the stairs.  So, I sent him ahead:  "You go first.  I'm coming right behind you."

He watched me curiously and as I reached the top, he asked, "Why don't I have crutches like you?"

My youngest brother, looking out the window at age 2.

I thought about this.  I had been faced with plenty of questions as a kid, but none of those had yet come from my own siblings.

I was just seventeen myself - still more than a decade away from claiming my identity as a disabled person - and battling internalized ableism daily.  Still, I felt sure that I wanted my baby brother to have an explanation that made sense to him.  One that was solid, and positive.  I didn't want him to fear me, my CP, or my adaptive equipment.

So I said something like:  "You have really strong legs.  Strong enough to walk by yourself.  My legs aren't as strong as yours, but that's okay, because my crutches help me!"  I smiled and nodded at him in encouragement.  Then, we went on with our day.

For the next week or so, whenever we climbed the stairs together, my brother would recall this conversation, turn to me at the top of the stairs, and say:

"Your legs not as strong as mine, but that's okay!" and nod, with a big grin on his face.

"That's right," I'd say, confirming this again and again.  And off we went to eat yogurt, play Legos, or watch a movie together.

I didn't spontaneously combust, and even better, my brother learned about disability for the first time.

He wasn't afraid.

And neither was I.

***

It was 2017, and I was climbing the steps to a friend's house, followed by her 11-year-old (who, like us, had CP.)  

Related: Like Looking in a Mirror, Part 3

On the way to their home, we had discussed middle school, Slinkys and slime.  Our young friend also asked if we had other siblings.

We shared we had brothers.

As I made my way toward the house, I overheard our 11-year-old friend say: "Do your brothers have CP?"

"No, they don't," Tara answered.

"Oh," our young friend said, sounding genuinely disappointed.  "That's sad."

Because, to us, having CP meant belonging and community.

And we found that in each other.

***

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