Saturday, July 29, 2023

Celebrating Tonia: 9 Years of Tonia Says


[Image: Tonia smiling widely for the camera with chin-length brown hair. She's sitting profile in her candy apple green wheelchair, wearing a blue Ms. Write t-shirt, light gray sweatpants and teal sneakers with neon yellow laces.]


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Today marks 9 years of Tonia Says. To celebrate both the prolific work on this blog as well as Tonia, the incomparable human being, I asked friends to share their favorite posts and their thoughts about Tonia herself. It has turned into a beautiful memorial and celebration. You'll find my contribution at the end of the post. - Tara, Tonia's twin sister

Note: Click on the blue or purple text to read favorite posts, pieces, or content mentioned.

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Alyssa: Tonia Says means so much to so many people, including myself.

Tonia Says was one of the first blogs I came across when I began writing about my own experience with CP. Before then, I had little to no connection with the disability community through my life and in many ways, didn’t even understand myself, and my own disability Things I thought odd details about myself – the way I jumped at loud noises, or struggled with understanding directions and finding my way around unfamiliar spaces– were all symptoms of my CP and I didn’t learn that until after I found Tonia’s blog. Through Tonia Says, I found community and understanding for the first time in my life, and that influenced my writing and the way I interacted with the world. I learned about disability history and culture. I learned about ableism and ways to advocate for myself. In short, Tonia Says changed my life and without her or her blog, I would have never connected with the disability community or claimed my own role in it. Because of Tonia, I am able to say I am a proud disabled woman.

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Ellen ArmendΓ‘riz Stumbo: I first met Tonia online. Someone sent her a link to a blog post I wrote, and we began talking. She was one of those people who, I believe, had a sixth sense that became attuned to know when parents of disabled kids needed a little extra hand holding in the journey. At least she did with me. Tonia made me a better parent. She confronted my ableism with grace, even when I know it took a lot of emotional labor for her to educate me. And I know she did it out of love. I don't know that any words could ever fully express the gratitude I feel for how she changed my life, and in turn, the lives of my kids. But also, she was my friend. We had a shared love of books and writing. She was much better at cheering me on than I was ever at cheering her on. Perhaps because she is the most prolific writer I’ve ever known, and I could not keep up with reading her work as fast as she wrote. And her stories are so real and authentically her. The disability representation that we all need. She was also a poet. Her emotions shared with a world through her written word, either through blog posts, her books, or her poems. And about her blog posts... talk about a wealth of wisdom and information for parents of disabled kids! She cared so much about us and our kids. That blog of hers was a guidepost in my life. Also, she had the best laugh. That big laugh that when I close my eyes, I can hear it! We spent Thanksgivings and Christmases and birthdays together. Sharing those laughs, talking about disability and books, talking about favorite characters from shows, and sometimes she would sing. Yup, if you know Tonia, you heard her sing at some point, probably a Disney tune or a song from a favorite musical. I miss her. Oh how I miss her. I was so fortunate to know her, and to call her my friend. I love you Tonia!


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Emily Ball: I learned that it’s important that no matter what, it’s important to tell nondisabled people that you know more about your disability than they do.

I also learned about [place] blindness from her and that I have it. I’ve learned so much from her and I was eternally grateful for her.

I’ve been struggling with some things recently and I really wish she was here. I miss her. 

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Kayla Carlson: I met Tonia through a mutual friend, and honestly at first I was nervous because I’d seen some of her content, and was like “Oh, this person is way too cool to be my friend.” While I was totally right about her coolness level, she was such an amazing friend. 

I can’t even begin to count the little moments where I was reading a blog post or one of her works where there was just the feeling of being completely understood. A feeling I’d experienced but never been able to put words to written on the page. It’s rare to be so seen, but I feel like Tonia really saw me in what was an unfortunately brief but incomparably meaningful friendship. 

I told her I would leave a comment on every single chapter of the Disuphere Universe books she wrote, and even though I did, I just wish there was more.

She had so much to give to the world and the people she cared about. Even so, I’m glad the blog is still up for people to stumble upon. In fact, when a friend’s baby was discovered to have a disability, I offered her a link to Tonia’s blog to give her some insight. The friend found it so helpful to hear from someone who was actually disabled speaking on various disability related topics instead of the loud and all-too-prevalent nondisabled voices speaking on subjects they will never understand with the nuance and complexity a disabled person would. 

I miss her. I love her. I thank her for her friendship. πŸ’“


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Alice Kina Diehl: Tonia Christle passed away this year. I miss her everyday. Thank goodness, her twin sister Tara Christle is still here. This small review sparked such a special friendship for years and ongoing. Film and Television is this important! 🀟🀟🀟


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Amanda Diehl: Tonia was a safe space when I needed it most πŸ’œ


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Emery: I think it’s impossible for someone to read Tonia’s blog and not learn from it, and it was also impossible to know Tonia and not learn something. And not just in a disability justice way. Tonia made damn sure that everyone she cared about learned that they were lovable and worth loving. I learned so much from Tonia’s painstaking line-by-line reviews of media, where, in the early days of our friendship, she and Tara called my attention to things I had completely missed in The Fosters’ terrible TBI storyline (aka the whole thing.) And in later years, I used [it] as a challenge to see how much I could “catch” on my own from the original content before reading the review.


I absolutely loved when Tonia shared stories about her own experiences, how she could combine What Parents Need To Hear™️ with authentic disabled realness. I loved watching her writing evolve as she freed herself from the fawn response and started being even more honest, less afraid to speak her mind, and less concerned with being palatable to nondisabled people. I loved watching Tonia come into her power as she grew as a writer and a person. I felt honored that she chose to share so much of that with me as her friend and with all of us as the audience of her blog. I still feel like one of the best accomplishments of my life is that a conversation I had with Tara and Tonia over Marco Polo inspired a summer blog post series. I love that Tonia was willing to have complicated conversations about tough and potentially traumatic topics as a regular part of our friendship. I loved that she felt like my questions and our conversation were important enough to address more thoroughly and to share with others. And I loved the series that came out of that conversation - if you haven’t read it, you should check it out! I think the most incredible thing about Tonia’s blog is seeing the way she was able to connect to so many people with all of her different forms of writing. There was something for everyone: Poetry, media reviews, personal stories, interviews, hell, even product recommendations! Topics as far and wide as CP, trauma, disability community, childhood/growing up, advice, mental health, media representation, NaNoWriMo, and even illness and dying. Seeing comments on the blog or the Tonia Says Facebook page from regular readers who I didn’t know at all was such a wild experience - just knowing that Tonia was reaching all of these people, and I feel like the luckiest in the world to have really known her. Tonia taught me that I could take up space. That I matter. That it’s okay to ask for what I need. That it’s okay to need things - to need people. That she would always be there for me. All of that stuff is way more important than any book review.


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Julie Idsinga: I love this 9th anniversary celebration, and have 2 posts in particular I keep thinking of, besides the beauty of getting to know Tonia herself.


One phrase that really stuck out to me, and has come back to me many times, I think came from Tonia's post about being in Costa Rica, with a little boy, and she said something along the lines of "Where everyone is disabled, nobody is."


Wow. Simple. And profoundly true. I could feel that feeling as I read it.


The other blog post series that spoke to me earlier, and again recently, was the series on unpacking "I can't".


I can relate to so much of it, and I hope professionals and parents can also read and learn from personal experiences and perspectives. 


I love that Tonia openly shared her own experiences, but was also always clear and sensitive to the fact that her experiences and opinions were hers, and that all of us with Cerebral Palsy or other challenges may feel or experience the world differently.


There is so much more I could say about Tonia, and the impact she has had on my life... Her joy, her care for others, even while she was enduring so much, and her constant hope to make a positive impact on people's lives. She has... More than I can say. 


You both have πŸ’›πŸ’œ


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K: Tonia was—is—one of the most beautiful people I have ever known. She was the kind of friend who scrawled her phone number in the margin of her letter, even though her number was in my phone contacts already, just so I'd have it there ... just so I knew she was there. She was love, and light, and fire, with an incredible capacity for empathy and advocacy. She loved with a gentle fierceness, and I can still hear her laugh—can still hear the way she'd say, "Did you want to say more about that?" before we moved to a new conversation topic, because she wanted me to know that she was there to listen. I feel closest to her now when I read her words. One of my favorite blog posts of hers was her story about Nico--that embodied so much of what I love about Tonia, her perceptions, and her writing. She was the sister I never had as a child, and she loved and accepted every part of me—CP included. I love her. I miss her.


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Alisa Marie: I’ve been struggling to know what to write for this. 


Tonia showed me how to be comfortable with my human limitations.  To accept myself as I am, without cleaning myself up first.


She taught me that all things that are different don’t need [to be] changed to fit the mold.


She taught me the power of being a cheerleader.


I miss her.


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Kayla Rodriguez: Tonia. What [a] beautiful person to have graced this planet we all share. She was warmth and acceptance and the real definition of love. Her passion for words and advocating was something I watched proudly. Her work deserves so much praise and award. I know her legacy will live on in so many hearts. 


She taught the world how to be still and listen for the heart. Something a chaotic, entitled culture does not do naturally. She showed how to gently love one another. To accept each other and not set expectations on one another.


 I have referenced her series and her words to many people. It is my opinion that her series regarding faith and how it should look towards disabilities ought to be read by every single Christian that believes in the gift of healing. We need Tonia’s truth on the rejection that zealous faith causes to people with disabilities. I wish it weren’t needed, but alas it is. Her words broke my heart and opened my eyes in a way that I am ashamed to say they were not open before. I am thankful for her vulnerability and maturity to face such a grave horror and speak against it.


She was joy and liveliness! Her personality was so enjoyable. She could laugh and joke like no other. You could lose all track of time sitting next to her enjoying everything from cookies to deep discussions. Her affection was so sweet. Her hugs were warm and it felt like they healed the aching parts of your heart. 


She was brave and courageous. I hope we can all be like her more. May her heart song continue to sing in the earth. She loved and lived so beautifully. Forever missed and forever adored.

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Marissa Shefveland: Tonia was tenacious and did exactly what she set out to do through her words and stories. I was lucky enough to read her earliest stories and knew she had a gift. She always encouraged others and saw the best in everyone she met. I’m sad I let time and distance separate us, but I know she blessed many lives and is very loved and missed.


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Vilissa Thompson: Knowing Tonia meant knowing another disabled person who loved words as much as I did.  


Tonia was one of the first self-published disabled authors I found online, and getting to know her & Tara became a pleasant friendship.  


Tonia was always excited to read whatever new piece I wrote, and celebrate the wins I was accomplishing in my work.  That’s the kind of person she was - loving, warm, and incredible with words.  


I miss hearing her write about a new blog post or one of her books she was drafting.  I miss talking about favorite shows with her, or just her checking in to say hello.  Tonia was the friend that was always there, from the good moments to the tough ones.  


Tonia gave so much, and I hope she knew how loved and valued she was.  She was truly amazing.  I’m glad to have known her for almost a decade.


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Tara: Tonia originally created Tonia Says because she hoped it would be a bridge between nondisabled parents and disabled children. But more than anything, I think she wished it could be a bridge to reach our parents in a meaningful way. So that they could truly see and understand her. As that hope gradually gave way, Tonia adapted. And Tonia Says became a safe haven where disabled people could come to experience being seen and understood. Sometimes, for the first time.


When Tonia Says began back in 2014, I didn’t believe I could claim a disabled identity. I’d been raised as a nondisabled child. I just thought I was really bad at it. But slowly, as I was exposed to her work, the work she shared by other people with disabilities, and most importantly, the disabled friendships she cultivated through this blog, I saw myself. And it healed a part of me that I didn’t know was broken to be able to own my disabilities. By accepting them some days, and other days railing against oppressive systems, people or representation. Some days, I was sad and disappointed by my limitations. And no matter what, Tonia would tell me “However you feel is okay.” 


Over the years, Tonia has used Tonia Says and other platforms to create tangible change in disability representation in the media. 


She reached out to an able-bodied actor who played a disabled character for years on network TV to gently explain why some disabled people disagreed with the casting of him in a disabled role. The actor understood and in years following, he said publicly that if a revival of the show took place, he would not reclaim his original role due to a need for authentic disabled casting.


Tonia’s tireless work pointing out the harmful disability representation in Seasons 4 and 5 of The Fosters led to the groundbreaking episode 5x11, “Invisible” in 2018. (Now available to stream on Hulu.) We saw scenes that centered the disabled character as someone with legitimate feelings and agency. The word “ableism” was said on TV for the first time we could recall. The TV parents apologized for the harm they did to their disabled teen and told him, “Honey, you’re not broken.” These showrunners and writers have gone on to create Good Trouble, with more nuanced disability storylines and authentic casting.


I loved how collaborating on this blog brought us together to discuss disability culture and pride, however I believe the work she was proudest of was the last installment of her disabled fiction series, called Quite Alive. Quite Alive delved into so many disability culture issues that we’d never seen represented before in a book. Things like disclosure, care dynamics, and personal accountability with ableist behaviors, to name a few. Quite Alive was the last longform work Tonia was able to complete, finishing it just days before her initial hospitalization to diagnose the illness that eventually took her life. 


Tonia grieved as the losses piled on top of her mercilessly – pain control, mobility, writing, autonomy and ultimately life – and she also loved with such abandon, laughed and smiled, hugged and kissed.


Even in her last months when Tonia was unable to continue writing, she fought for the care and safety of herself and others. She was both scared and tenacious, both devastated and fierce, in the face of institutional harm and death. 


In these last months, I’ve experienced both the earth-shattering loss of my twin, my soulmate, my favorite, and the feeling that she is just as close to me as she was in life. 


Tonia, this is for you. A celebration of your life and your blog. A place to mourn this crater created by your absence. Both. I love you endlessly, and I hope you knew in life and continue to know now how incredible you are. Thank you for everything.


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Friday, March 24, 2023

 Tonia M Christle

1981 - 2023


So, What's The Hardest Part?

by Tonia M. Christle


Facing this:

The hardest part.

This

Having nothing

To hide behind.

This

Reality

Lurking

Behind so many

Curtains.

This room

Without me

Looms.

I want

To live forever,

Is that

Too much

To ask?


Friday, July 29, 2022

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.





Monday, March 28, 2022

Interview Questions for Current Work

2,200 words
17 minute read


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.

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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.

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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!

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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.

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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.


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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.]



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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!


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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.

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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.

***

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. πŸ˜‚ (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!

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Monday, March 21, 2022

Interview Questions About My Books

1,210 words
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.

***

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.  

***

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.

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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.

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

Definitely disability fiction.  All day long.

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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!

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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.

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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!

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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


Monday, March 14, 2022

Answering Your Burning Questions About CP

109 words
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


Monday, February 7, 2022

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:

 

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):