8 Years Blogging At Tonia Says

It's hard to believe it's been 8 years since I started blogging here. A lot has happened especially over the last year that has limited my time for blogging.

And I miss it.

I miss it so much it hurts.

But I believe that I'll come back to it.

I miss you all.

Interview Questions for Current Work

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17 minute read

Previously: Interview Questions About Writing / Interview Questions About My Books

As of this writing, Tara and I are eight chapters into our latest work, Appearances, and we wanted to answer the third set of these questions.  The summary (since it’s referred to a few times in the questions) is as follows:

Middle school teacher, Sam Jensen and three of her students face a situation none of them is prepared for. The only way through it is together.

Since we love discussing writing together, we thought we’d unpack some of the secrets of Appearances for you.

***

Can you share with us something about the book that isn’t in the blurb?

TONIA:  In this book, we are introducing three new characters, middle school siblings Shay, Oscar and Clancy Flynn.  We love them to bits.

***

Are there any secrets from the book (that aren’t in the blurb), you can share with your readers?

TARA: There are going to be more perspectives than just the main four.

TONIA: Yes, if you love the Disuphere universe and its characters, definitely tune in to read this one!

***

Can you share a snippet that isn’t in the blurb or excerpt?

OSCAR

I am an activist because I exist. 

Some might call it Being Annoying, but they won't forget about me, will they?

At least, I thought it would be that simple.

But public middle school is basically a giant ball of suck. It's so effing large that the wheelchair that used to be just for vacations, long shopping trips and amusement parks is now something I'm forced to use every single day. 

And I'm just going to say it. I'm not one of those ripped athletes who roll as if every surface is Costco smooth. My arms didn't get the memo that they would, in fact, be noodles hanging from my shoulders most of the time.

And once I actually get to my classes? My seat is usually in the very back of the room, and in my first hour health class, it’s at a table that faces a wall. Because of overcrowding. Or a lack of imagination. I don't know.

It's hard to be a noodle-armed activist talking to a wall, okay? 

It's depressing. 

So, I started asking to work in the library. 

Finding the secret door had been a total accident.  

***

Does one of the main characters hold a special place in your heart? If so, why?

TARA: Why would you ask such a horrible question?

TONIA: I know! I can’t pick among my children!

TARA:  You’re asking for a dissertation.  You realize that.

TONIA: Absolutely.  So, who should we start with?  (Who do we love the most?)

TARA: I’ll pretend I didn’t see that last part! Let’s talk about Sam first. She’s someone you officially introduced in Quite Alive, right?

TONIA:  She is.  She definitely holds a special place in my heart because she’s this intriguing combination of super blunt and really vulnerable.  So that’s what first attracted me to her, but here, we get to see Sam as a teacher – another side to her completely.

She’s not very confident in her teaching abilities – which we saw in Quite Alive – but seeing her through her students' eyes, we can see just how important Sam and her classroom are to so many of these kids.  She creates the safe space so many of them need.

TARA: Yes! Love her! And then, we have the kiddos!

I love writing all of the kids, honestly, because they’re complete opposites of me, personality-wise. Unapologetic. Unafraid to take up space. 

TONIA:  The kids are really great because they’re so unlike any other character I’ve written so far, especially any kid-character.  They’re all very confident and grounded and they’ve been well-loved.

***

What was the inspiration for the story?

TONIA: I can say that I remember we were trying to come up with some kind of activity to see us through a difficult time.  And with us, a shared activity that really takes up our focus is usually writing.  So I know we knew we wanted to write something and we had one kind of false-start before we started writing Appearances.  But you really came up with the idea.  Do you want to share more about how it came about?

TARA: I think the main thing we were focused on was, “What is something that would keep our focus and bring us joy?” And for me, I remember saying that I wanted to write kids. So, the idea for this project really stemmed from that desire.

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What is the key theme and/or message in the book?

TARA: So far, I'd say that a major theme is that trauma presents differently on different people, and that no one really knows how they'll react in an emergency situation.

TONIA: I think a key message in this book so far is that disabled lives do have value and can and should be prioritized in emergencies.

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What do you hope your readers take away from this book?

TONIA: I hope readers begin to think of and consider disabled students in emergency situations.

***

What is the significance of the title?

TONIA: Tara, do you want to take this one?  Since you titled it?

TARA: Honestly, I was thinking about a play on "Disappear / Disuphere," for obvious reasons. Also, though, I think there's a lot in the story about how people appear - without giving too much away…

***

Tell us about the process for coming up with the cover.

TARA: This was such a fun collaboration with an artist friend! She created a beautiful piece based on what we talked about! It's something I definitely want hanging on my wall!

TONIA:  Absolutely!  I loved how all three of us collaborated on this, and I love how she incorporated significant objects in the lives of the characters – but how they’re mostly in shadow.  The bookcase is so majestic and magical – definitely gives me Disney’s Beauty and the Beast vibes.

[The cover of Appearances shows a giant bookcase with a crack in it where light is coming into the darkness.  There are also various personal items belonging to the characters hidden in the dark -- Oscar's chair, Sam's sweater, Shay's truck and Clancy's guitar.]

***

What is the future for the characters? Will there be a sequel?

TONIA: One thing I love about writing this universe is that we follow the characters after the usual story is done, and there have been ten sequels to the original story, so I think the chances of a sequel to this one are high.

TARA: I would love a sequel!

***

Do you write listening to music? If so, what music inspired or accompanied this current book?

TONIA: One song I’ve listened to (particularly when writing Clancy or her mom, Shannon) is Hope by Alexis Ffrench.

TARA: I listen to Mirror by Helen Jane Long mostly while writing.

***

If you had to describe Sam / Shay / Oscar / Clancy in three words, what would those three words be?

TARA: For Sam, I'd say tender, compassionate and blunt.

TONIA: And for Sam, I’d say loving, sensitive and caring.

TARA: Shay is joyful, protective and focused.

TONIA: Shay is whimsical, protective and confident.

TARA: Oscar is bold, conflicted and non-compliant.

TONIA: Oscar is a fighter, a rebel and tender-hearted.

TARA: Clancy is afraid of failure, driven and eccentric.

TONIA: Clancy is creative, intelligent and soft.

***

Your story is set in 2023 in a non-pandemic alternate universe. Why did you choose that as the setting for your book?

TONIA: I think because we need a break from reality and need the hope of a future without a raging pandemic, honestly.

***

If your book was to be made into a movie, who are the celebrities that would star in it?

TONIA: Emma Hunton as Sam.  Vivian Watson or a younger Rowan Blanchard as Clancy.  Either a young Khleo Thomas or a young Jordan Fisher as Oscar. I don’t have a Shay.

TARA:  August Maturo as Shay. A younger A disabled actor with a Jacob Tremblay vibe as Oscar.

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Was the writing process different and what challenges do you face when writing in a new character?

TARA: As it's a collaboration, the process is a bit different than writing solo. There's more conferring. We are patient with each other's writing style. 

TONIA: And for me, when writing a new character, it’s trying to differentiate new characters from each other, and from previous characters.  I’ve written so many characters I don’t want them to seem one-note.

TARA: There's not too much that's challenging about writing new characters. It's exciting to get inside their heads!

***

Can you give us some insight into what makes Sam / Shay / Oscar / Clancy tick?  (What motivates them?)

TARA: I think Sam is extremely motivated by her childhood wounds. She wants and needs to be the teacher she never had growing up. And becoming that teacher, while challenging, has helped her along her healing process.

TONIA: I’d agree with that for sure.

I think Shay is extremely motivated by his own joy.  He knows what brings him joy, he sets out to find those things and he isn’t bothered by what others might think of him, or the idea of being average.

TARA: Yes, I think Shay is definitely interest-motivated. A thing - or some part of a thing - has to hook him, or he'll just go through the motions.

And Oscar is motivated by his sense of justice and freedom. 

TONIA: Yes, I was going to say, I feel like Oscar is motivated especially by injustice.  It pushes him to act.

And I think Clancy is motivated by external validation and love.  She gets good grades and works hard at all the things because she wants to know (and keep knowing) that her parents and people in her life love and value her.

TARA: Yes, and to take that further, I think she is motivated by fear of failure. And what she imagines failure might mean for her.

TONIA:  For sure, yes.

***

What are the key challenges you’re facing when writing this book?

TARA: I think maybe just the pacing is a bit of a challenge. Ensuring that the POVs are showing something that's helpful to the overall story, even if there's not a lot happening actually. Keeping suspense but not drawing it out unnecessarily.

TONIA: Wow, that’s so interesting that so much thought goes into it for you.  Writing sounds…almost cerebral for you.

TARA: Well, usually, I'm your plot / brainstorm / research human! So, I think it makes sense that my writing process reflects that. 

TONIA: It does!  It’s very different from my experience of writing, which Shay would probably call my “joy-warmth.”  Because I literally just feel like I watch the characters in my head and transcribe what they’re doing as fast as I can so I don’t miss anything.

But as far as challenges, I’d say pacing as well and just adjusting to being in sync with another person, and making sure I carry through the little details and nuances in your sections to my own so it reads like a whole work and not two separate stories.

***

What is the highlight of writing this book?

TARA: I mean, it isn't done yet, but I love writing with you and exploring new characters!

TONIA: Definitely, writing together!

So far, I’ve really liked writing the scene where Oscar’s grief and fear about being separated from his wheelchair.  A lot of the things I write about (that included) I’ve never seen represented, and it makes me really happy to get to bring them to the page, so to speak.

TARA: Is that the favorite POV section you've written so far? Do you have a favorite of mine?

TONIA: Yes, that's a favorite.  (Another favorite was writing Pete and Shannon.)  

And as far as yours, I love the section quoted above – Oscar’s first POV.  I also love when we first meet Shay because he’s so unique and his own character and I could just see him, and Clancy’s chapter all about losing her molar!

What about you?  Any favorites you’ve written? Anything stand out that I’ve written?

TARA: Yeah, the molar section was really solar. 😂 (That is to say that I think I liked writing that one most, so thank you for the idea about Clancy losing a tooth!) 

Another section that was an interesting challenge was Sandra. Because we've seen her from the outside, but never first-person! 

TONIA: Can I jump in here and just say that I loved your Sandra section?  You made me empathize with her.  I felt I understood her on a deep level after reading your section from her POV, which is quite a feat since she’s only been seen through her family’s eyes so far.

TARA:  Aw, wow, thank you! 

As for your sections, Shannon's was the most moving, hands-down. Like, maybe of the whole book so far. I can't imagine what she is going through.

I also really empathized with Oscar's floor hockey yearning and then being shut down. Thank you for including that part. 

TONIA: Thank you for being open to all my whims and things I want to explore.  It was really fun talking about this with you.

TARA: Always!

***

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

Interview Questions About My Books

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9 minute read

If you've met me (and even if you haven't) you probably know that I'm a huge fan of writing.  I've written a ton.  I'm currently co-writing story number 11 in a series of disability fiction with Tara.  These are the second set of writing questions that can be found at the link.  If you want to read the first set of writing questions: Interview Questions About Writing, you can find those at the second link.

I'm going to use these questions to talk mostly about my series, which is not traditionally published, but which I will link to further down so you can find it.

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1.  How many books have you written? Which is your favorite?

Eleven in my current series.  

My favorite one is probably Quite Alive which is book number ten.  It unpacked a lot of disability culture issues, like medical privacy and family PCAs and the nuances there. It also got a lot of negative feedback, like, weekly, so it makes me really happy and proud that I was able to persevere and finish it.

But I also really love Windows which is book number eight.  Because telling a story of disabled kids just having fun at summer camp felt, in and of itself like an act of resistance.  People so often want to see suffering and sadness when we speak about disabled stories, and I just wanted to tell a story of disabled kids being kids, making lasting friendships and dealing with everyday life, while also experiencing the life-changing atmosphere of a camp where for the first time in their lives, these kids, like so many of us, have found their people.

[Image: The cover of my eighth book, Windows, shows a blue sky and a wooden sign reading CAMP BRAVERY surrounded by children's handprints]

And I still think Found is so super important.  If you haven't read Found yet, it is book five and it is so important, regarding disabled / nondisabled family dynamics, ableism and more.  

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2. What is the most surprising thing you discovered while writing your book(s)?

I wrote probably the first three books in the series largely unaware of my own trauma background.  It took until book four to really start unpacking my own trauma and understanding the extent of it that I live with on a daily basis.

***

3. Who is your favorite character?

Since this question is asked twice, I'm going to answer it twice!  It's so hard to narrow down to one favorite character because I love them all (and this will not be including book eleven because there's another set of questions for current work that Tara and I are tentatively planning to answer together.

But the first person who comes to mind as a favorite character is Levi.  We meet him in book four, Somewhere Inside.  He grows so much over the series.  When we meet him he's so far in his trauma he feels like an entirely different person than who he grows up to be.

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4. Do you have a favorite character that you have written? If so, who? And what makes them so special.

Can I have a favorite family?  Because I really love the Jensens.  We meet Sarah in Found and Weston in Windows and Sam in Quite Alive.  They're all amazing.

I love Sarah because we literally never get to see a wheelchair using foster / adoptive mom who's taking in so-called "hard to place" kids.  The narrative we usually see is children being removed from wheelchair using parent's custody, and I went completely against that for That Summer, which is book nine.  I ended up telling Weston's entire life story, including he and Sarah meeting and becoming family.  We also don't often see a wheelchair-user who is unapologetic about her choices and her existence and her life.  I love that about her.

I love Weston because of his honesty.  He's always as honest as he can be and I adore that about him.  I loved learning more about him in That Summer.  I love him because he makes me laugh.  Because he's just a good kid, who so often got typed the opposite.  He's a sweetheart and so vulnerable deep down.

And I love Sam for a similar reason.  She's gloriously blunt, and guarding such a soft heart.  She has so much going on, and I feel so happy we got to go with her on her journey of self-discovery in Quite Alive and continue to follow her and a few of her students in the current story we're writing.

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5. Where do you get your inspiration?

From my life, from disability culture and from the media and TV shows I currently watch.

***

6. You’ve written poetry and disability fiction. Do you have a preference?

Definitely disability fiction.  All day long.

***

7. Is it easier to write poetry or disability fiction?

Here's the thing.  Poetry takes zero effort for me to produce most of the time.  I put literal hours, and tears and stress into writing disability fiction.  That is where my heart lies.  That's what I wish was more widely read.  And what I wish people really wanted to discuss with me, because I am here to discuss the Disuphere (pronounced "disappear") series always.

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8. Where can readers purchase your books?

Bonus!  The Disuphere series is free!  If you have a Kindle you can even download it there!  Just click the link to find it!

***

9. Where can readers find out more about you and your books?

To read more about my series, click here.  To find out more about me click the ABOUT tag on the upper right hand side of the blog.

***

10. Have any of your books been made into audiobooks? If so, what are the challenges in producing an audio book?

No, only if you count reading out loud on Marco Polo to friends.

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11. Which of your books were the most enjoyable to write?

I'm really enjoying writing the current one (which you'll hear more about in the future) because I love writing with my sis!

***

12. Tell us about your first published book? What was the journey like?

I first published a book of poetry in 2007.  I was at a super different time in my life in almost every way.  The book was full of mostly Christian poems.  I followed it up getting published in a couple of anthologies in 2009 and 2010 and then got another book of poetry published in 2011.

It was weird.  I was (and remain) super shy so I was terrible about self-promotion.  And I was at a way different point in my life where I craved validation from others.

Now, I'm more committed to my work being accessible (and free) to as many people as possible.  I understand making a living (especially disabled folks) and I don't fault anyone who does get published, but I don't believe it's right for me to charge money in order for people to enjoy something I created.

Please read my series and come talk to me about it! Especially if you loved it or learned something new!

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

Answering Your Burning Questions About CP

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1 minute read

[Me, modeling a hat and resting in bed.]

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Every March, it's Cerebral Palsy Awareness Month and every March I open myself up to questions about CP.

This year, I actually got some!

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How will my cerebral palsy will affect me later in life?

10 Things No One Tells You About Aging With CP

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How common is chronic pain with CP?

A quick Google search says that 2/3 of adults with CP (or 66% of us) report chronic pain impacts us.  (Myself included.)

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And that was it!

For more answers to CP questions check out this link:

Cerebral Palsy FAQ (by parents of kids with CP)

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

A-Z Bookish Questions

I got these from Rust Belt Girl because I'm a big reader, I'm always up for discussing books.

AUTHOR YOU’VE READ THE MOST FROM:

Probably Ann M. Martin, to be honest.

BEST SEQUEL EVER:

Catching Fire.

CURRENTLY READING:

Know My Name - Chanel Miller, Mockingjay - Suzanne Collins, My Dark Vanessa - Kate Elizabeth Russell, Claudia and the Genius of Elm Street - Ann M. Martin

DRINK OF CHOICE WHILE READING:

Espresso Iced Coffee

E-READER OR PHYSICAL BOOK:

Kindle!

[Tonia, contemplating a remote, a DVD and a copy of Little Women]

FICTIONAL CHARACTER YOU PROBABLY WOULD HAVE ACTUALLY DATED IN HIGH SCHOOL:

No one, but I always wanted to be best friends with Kristy Thomas.

GLAD YOU GAVE THIS BOOK A CHANCE:

Second Glance - Jodi Picoult

HIDDEN GEM BOOK:

ROOM - Emma Donaghue

IMPORTANT MOMENT IN YOUR READING LIFE:

Reading The Kindness of Strangers - Katrina Kittle

JUST FINISHED:

Babysitter's SuperSpecial: Island Adventure

KIND OF BOOKS YOU WON’T READ:

Romance.

LONGEST BOOK YOU READ:

ROOTS - Alex Haley

MAJOR BOOK HANGOVER:

Concrete Rose - Angie Thomas

NUMBER OF BOOKCASES YOU OWN:

2

ONE BOOK YOU HAVE READ MULTIPLE TIMES:

The Kindness of Strangers - Katrina Kittle

PREFERRED PLACE TO READ:

Home / Outdoor patio.

QUOTES THAT INSPIRES YOU/GIVES YOU ALL THE FEELS FROM A BOOK YOU’VE READ:

“But it’s okay that you think that. I think it takes a lot of energy and hard work to pretend things are perfect. I think I’d get really exhausted trying to pretend that. Sometimes it takes a lot of guts and bravery to admit that things aren’t perfect, that they’re not even okay."

― Katrina Kittle, The Kindness of Strangers

“Words, for all they were flimsy and invisible, had great strength. They could be fortified as a castle wall and sharp as a foil. They could bite, slap, shock, wound. But unlike deeds, words couldn't really help you. No promise ever rescued a person; it was the carrying-through of it that brought about salvation.”

― Jodi Picoult, Second Glance

“Scared is what you're feeling. Brave is what you're doing.”

― Emma Donoghue, Room

READING REGRET:

Roll With It - Jamie Sumner

 

SERIES YOU STARTED AND NEED TO FINISH (ALL BOOKS ARE OUT IN SERIES):

Babysitter's Club

THREE OF YOUR ALL TIME FAVORITE BOOKS:

The Kindness of Strangers - Katrina Kittle, Second Glance - Jodi Picoult, ROOM - Emma Donaghue

UNAPOLOGETIC FANGIRL FOR:

Ann M. Martin

WORST BOOK HABIT:

Starting too many at once?

X MARKS THE SPOT: START AT THE TOP LEFT OF YOUR SHELF AND PICK THE 27TH BOOK:

Lisa's War - Carol Matas

YOUR LATEST BOOK PURCHASE:

Downloaded all of the Disuphere series onto my Kindle!

ZZZ-SNATCHER BOOK (LAST BOOK THAT KEPT YOU UP WAY LATE):

Quite Alive

Update

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4 minute read

I realized yesterday that it was Monday.

And that it was the first Monday in a long time that I didn't post a blog.  Unfortunately, that may become common.

But I wanted to come by and post an update.

Most of you know by now, November is usually my busiest month.  This year, it seems, starting at Christmas, was my busiest time, and it's still continuing to be the case.  Starting in January, Tara helped post the latest post in the 13 Reasons Why Summer Series about Alex and Outbursts (which we love and are so proud of.  Please check it out if you haven't already.  And after that, K whose "I Can't" interview was epic graciously offered to ready and post the three remaining interviews.  (If you missed hearing from Anonymous and Kayla, please check out their interviews as well.)

This last month or so has meant a lot of things.  But among them, it's meant much-needed and prioritized time with friends (on video chat.)  I feel closer to my people than I've felt before.  We also splurged (using money from present and past Amazon gift cards) to buy a portable DVD player (our combo DVD player / VCR quit working earlier this year.)  And a Kindle, which I love.  Especially now that I learned how to load my series of disability fiction right onto it.  (Speaking of, Tara and I are also writing the 11th book in the series...together!

Along with all the lighthearted stuff, we've done some serious stuff too.  Getting boosted for The Thing was on our Unfortunate List of Things To Do, so that happened last Monday.  The fatigue is real, friends, but the side effects of Pfizer were so much less than Moderna overall.  (Curious about how vaccination will go with CP?  Check out these posts.)

[Getting boosted last Monday.  You know I always need to flex.]

Oh yeah.  Tara gave me a haircut in December.  I enjoy it a lot.  My first in nearly two years.  Gotta love at-home haircuts.  (Yes, we are still quarantining, even though, yes, that is a local Target store where we had to go to get boosted.)  Trust that other than the most necessary reasons, we've been staying home.

To finish -- here's a thing that bring me joy lately.  (Because you don't need to hear just how much I enjoy grocery store bread and bananas, that we're now able to get thanks to friends generosity and Amazon Fresh...LOL.)

Colleen Vlogs - This YouTube channel is everything.  I linked one of my favorite videos.  As a former NICU preemie, seeing this family with their preemies has been so healing for me.  Also, Colleen is very open about her ADHD and makes neurodivergent things very normal and it's a joy.  Her husband, Erik, is on one of our favorite shows, Good Trouble, and in addition to their adorable twins, they have a three-year-old with a passion for trucks that will blow your mind in the best way.

Sending all the love to you, friends.

***

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

Unpacking "I Can't": An Interview with K

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15 minute read

Our final installment in the "I Can't" series comes from my longtime friend K. Be sure to check out her last answer, too, for some practical tips on how to encourage children while still allowing and respecting "I can't." Without further ado, here's what she has to say:

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Were you allowed to say “I can’t” when you were growing up?

K:  It was definitely discouraged. My parents sometimes called me “Can Do Girl” because I said “I can do it” so often when someone offered help. That was a nickname I remember being proud of (and I love that my parents encouraged me to persevere!), but I also remember feeling some pressure, too—because independence was such a strong part of my identity, I felt some sense of failure when I genuinely couldn’t do something and needed to ask for help.

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What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

K:  When I say “I can’t,” I am not trying to be stubborn, lazy, or difficult. Typically, I am expressing that something is either physically impossible for me or unsafe. And yes, I’ve found that this boundary is often lost on non-disabled people.

Here’s one example of many: I went on a trip with my friends that involved a sailboat ride we had reserved and paid for in advance. When it was time for the sail, the captain said, “Okay! Getting into the boat will be the hardest part: All you have to do is get over this chain and then jump from the dock to the boat.” (Cue my ominous feelings!) The chain was very high, and then there was a space we’d have to jump over to get into the boat. Not a huge space, mind you, but if I missed (AND I WOULD MISS), I’d end up in the harbor. My friends and I all knew this task wasn’t feasible for me, but when I said, “I can’t do that,” the captain’s immediate response was, “It’s the only way on, so you have to.” At first, I think he assumed I was being needlessly difficult and entitled, because it took repeated insistences from my friends (“She literally can’t get on the boat.”) before he acquiesced, thought about it for about thirty seconds, and found a way to move his boat closer to the dock so at least I wouldn’t have to jump.

I’m not excusing his initial resistance, but I think nondisabled people sometimes struggle to grasp the realities that people with disabilities face. If a nondisabled person told someone to jump thirty feet high and the reply was, “I can’t,” there would be a mutual understanding that the request was unreasonable. But when a nondisabled person asks a disabled person to do something that tends to be easy for nondisabled people—say, taking independent steps or jumping a small distance between a dock and a boat—a genuine “I can’t” is often perceived as obstinance.

The other nuance that people sometimes miss is that our abilities can change from year to year, day to day, or even moment to moment. Just because I could do something easily last week doesn’t necessarily mean that I can easily do it today. Likewise, maybe something that used to be impossible for me is now possible. Many factors can play a role here, including environmental factors (temperature, crowds, accessibility of an area), physical factors (injuries, surgeries, illnesses, fatigue, growth spurts, aging), and even emotional factors (nervousness, excitement).

***

[K smiling for the camera at about five years old.]

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What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

K:  There’s often the risk that someone won’t believe us, as I illustrated with my earlier anecdote about the boat trip. Sometimes our attempts to say “I can’t” are deemed invalid by a nondisabled person, either because they assume we’re being stubborn or not trying hard enough or they think we just need to believe in ourselves more. Sometimes, a well-meaning person will say something like, “Yes you can! You’ve never been one to back away from a challenge!” Occasionally I really do just need a little encouragement and assistance to accomplish something, but more often than not, this reaction is counterproductive for me. By nature I’m a very determined person, and I don’t say “I can’t” lightly. I appreciate when people believe in me, but when I say that I can’t do something, I also need them to believe me.

***

Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received?

K:  Yes. It has often been received negatively. Here’s one example: Once, I was on a walk with my mom and she kept asking me to stop walking with my knees knocking together. I kept trying to do as she asked, but my legs just wouldn’t cooperate. My mom is typically very understanding and patient, but this time she was getting increasingly frustrated every time I said, “I can’t.” She kept saying, “It’s EASY, just move your legs apart like THIS!” and demonstrating, and by the end of the walk I was nearly in tears. I truly was trying to do what she asked of me; my body just wouldn’t listen.

***

What message was conveyed to you because of moments like this?

K:  I felt incredibly helpless in that moment. I realized then that I was doing everything I could and it still wasn’t enough, and there was nothing I could do to convey to her what it was like to have CP. I felt alone.

But the morning after our walk, my mom and I were in the kitchen together and the TV was on, and a news segment came on about an actor and dancer with CP named Gregg Mozgala. He said something along the lines of, “It’s hard to understand what having CP is like if you don’t have CP. It’s like having a body that doesn’t always listen.”

I didn’t even realize that my mom was paying attention to that segment too, but right after it ended she came over to me and said, “He just said the same thing that you told me yesterday. I’m sorry I got upset with you. I didn’t understand.”

I wanted to cry all over again. It was so validating to hear someone else with CP put words to my experiences, and it meant a lot to me that my mom apologized and reflected on our situation. I think sometimes it’s hard for parents, too—my mom is amazing, and I knew she only wanted to help me, but my difficulties were getting lost in translation because her body doesn’t move like mine. Our bodies speak different languages.

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Have your experiences contributed to the way you set or struggle to set boundaries?

K:  Absolutely. By nature I’m extremely tenacious and also a people pleaser, so I’m sure those qualities affected my ability to set boundaries as well. But I’m working on it. I spent so much of my life thinking that the phrase “I can’t” was a sign of failure and defeat, and I’m finding that this mindset is damaging. Sometimes “I can’t” is a sign of courage—a sign that I’m finally learning to listen to my body, to push myself when needed but also to set healthy boundaries.
I still struggle with expressing and maintaining boundaries, but connecting with the disability community has helped tremendously. I hope it helps parents, too, to hear from adults who have a disability like their child’s. Parents may never know exactly what it’s like to have their child’s disability, but they can start to build that empathy and understanding by truly listening to their child and by seeking out other firsthand perspectives.

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Anything more you’d like to add?

K:  Some parents of children with disabilities might wonder how to foster resilience and perseverance in their children while still allowing and respecting “I can’t.”

First, I just want to acknowledge that productive struggle is important; sometimes we all get frustrated and feel like giving up, and at times we need to push through these feelings and keep trying. Many of my proudest accomplishments were only possible because I persevered even when I wanted to stop, even when I thought, “I can’t, I can’t, I can’t.” And sometimes I did need a push from other people, including my parents. I’m NOT saying that parents should say, “Okay, never mind” whenever their child says, “I can’t.” In my opinion, they would be doing their child a disservice. My family believed in me and pressed me to be the best I could be, and that was a wonderful gift. Perseverance has taken me far in life, and that’s partly because I learned from a young age not to shy away from challenges.

But if your child says, “I can’t,” please don’t shut them down. Resist the urge to reply, “We don’t say those words.” In some situations, simply accept their response and move on.

Other situations might require more follow up. If they’re emotional, acknowledge the emotions they’re feeling (e.g., fear, frustration, sadness, anger), and help them name those emotions and identify why they might be feeling that way. It’s often incredibly difficult to admit that we can’t do something, especially when it’s a task we watch our peers do easily. And if they say “I can’t” in a defeated way, you can validate their feelings and then help them reframe their way of thinking with a qualifier: “I can’t do this yet,” or “I can’t do this right now,” or “I can’t do X, and that’s okay, but I’m really good at X, Y, and Z!” This reframing helps me sometimes when I feel down about something I’m not able to do because of my disability.

Then take steps to help them manage the situation. If your child is overwhelmed, they may just need a break, or they may need help breaking a large task into smaller, more manageable pieces. Depending on the situation and your child’s age and ability, you might also consider working together with them to find a way to adapt the activity so they can do it. If your child is able and willing to suggest adaptations, this can be an incredibly empowering process for them: It allows them to gain some control in a challenging situation, and it helps them develop creative coping skills that will serve them well throughout life. Also, a little bit of help (combined with patience and encouragement) can go a long way. Sometimes we just need more time and support to master a task, and it’s wonderful when others acknowledge that and give us the tools and space we need.

Encourage perseverance with positive reinforcement. Remind your child often that they are kind, smart, talented, and strong. Celebrate with them when they accomplish a goal they have been working toward. Make failure safe by encouraging them even when they struggle, and remind them that they learn and grow every time they try. When they persevere, lift them up with comments like, “I love how you kept trying and trying until you got it,” and “Wow! You worked so hard to do that. I know it wasn’t easy, but you did it! You are amazing,” and “You are such a hard worker!”

And encourage healthy boundary setting with positive reinforcement too. In some situations, that may even mean praising your child for saying “I can’t” and encouraging them to seek help when they need it. “I can’t” is not a universally negative statement. Boundary setting is essential for their physical and emotional safety and wellbeing, and it is a skill that will serve them well throughout their life.

Unpacking "I Can't": An Interview with Anonymous

799 words

6 minute read

This week's "I Can't" post comes with no name but lots and lots of wisdom! I found myself nodding along to every answer, and I especially loved the response to the last question.

Here's what this week's guest has to say:

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Were you allowed to say “I can’t” when you were growing up?

ANON:  Generally, no. “I can’t” was treated as a swear word around me by doctors and physical therapists and other adults. From a young age, I was taught those words were not allowed to the point where I was reprimanded immediately or ignored for using them. 

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What do you mean when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)

ANON:  Saying “I can’t” I was asking for help. I can’t do this alone. I need help. It was typically said from a place of anxiety and intense fear. But adults didn’t understand. They viewed my “I can’t” as defiance, a refusal to do the thing that was asked. I was often scolded for “not even trying” or given a flat “yes you can” in response. 

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What risks or vulnerabilities exist in saying “I can’t” as a disabled person?

ANON:  Saying “I can’t” you are generally risking the person’s anger or possible punishment, even manipulation or other forms of emotional abuse. If you are expressing a need for help or accommodation, within that “I can’t” you are at their mercy hoping they will provide the assistance you need. 

***

[A self-portrait of Anonymous. She is smiling slightly and has brown hair and glasses. She is holding a pencil.]

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Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received?

ANON:  I have several, but one stands out. 

I was in adaptive horseback riding. One day as I was mounting my horse, my foot got stuck behind the saddle as I went to swing my leg around the horse to get on. I tried for several moments to free myself, clinging to the reins and horn for balance, before desperately saying, “I can’t get up.”  to my helpers. Everything stopped. 

What did you just say? One of them shot back at me. 

I tried to explain that I couldn’t get my leg around. That my foot was wedged behind the saddle. That it was impossible for me to get it out on my own. That I’d already tried before saying “I can’t.” 

So what do you say instead? 

“Please help me!” I managed to beg. 

Once they had freed me and I was safely up on my horse I was praised for using the “correct words” and asking for help rather than saying “I can’t.” 

See you can do it! They praised me.

But the thing is? I didn’t do it. It was only because of them that I had gotten my foot free. I hadn’t done it myself. They’d forced me to plead and ask nicely for assistance, in a way that made them comfortable, rather than accept what I was already communicating by using “I can’t”  

Hearing this message from such a young age, it was easy to overgeneralize and feel like I was never allowed to say “I can’t” or disagree in any situation. If someone asked me to do something, I was supposed to do it, and do it with a smile. I was taught to people-please.  

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What does it mean when disabled people grow up unable to express an inability to do something?

ANON:  Disabled people are taught in so many little ways that our bodies do not belong to us. That we are not allowed to have boundaries or to say no to the people that “know best for us.” 

Unfortunately, this is directly linked to compliance culture and more times than not leads to assault and abuse of disabled children and adults who were never taught boundaries or consent in the first place.

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Have your experiences contributed to the way you set or struggle to set boundaries?

ANON:  I do struggle setting healthy boundaries still today. Not only because I was never taught how, but the internal messages I received as a child were that having limits was not allowed.

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Anything more you’d like to add?

ANON:  Saying I can’t is more than just defiance or reluctance to try. “I can’t” is generally the first word - sometimes the only word - we have children to express a boundary or a limit, physical or otherwise. 

All children need to be able to say no, stop, or “I can’t” when they feel uncomfortable. It is the adult’s job to figure out why and not just assume.
This is especially true for disabled children who are much more likely to experience assault and abuse because of their disability. 

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Want more? Here's Anon's blog post about this topic:

I Don’t Know How to Say No