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 Armendáriz 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. 💓

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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 💜

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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 💛💜

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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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