Thank you all so much for showing up and celebrating Tonia and Tonia Says for the last 5 weeks. She was so lucky to have such a strong and vibrant community.
I thought it would be appropriate to finish this series out with the things we've learned from Tonia and Tonia Says. Feel free to leave comments!
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[Image: Two white women -- Tonia and Tara -- wearing sunglasses posing in front of a tree. Tonia is wearing a rose-colored shirt that says Not here to please you on the neckline in script. Tara is wearing a tan bucket hat and a teal sleeveless shirt that says I BELIEVE HER. We are smiling.]
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Emery: I’m not sure when I first learned about the concept of disability pride, but I am confident that Tara and Tonia were some of the first people who empowered me to accept a disabled identity. They both reassured me repeatedly that there was no scarcity in disability, no limited space that I would be taking up and barring someone “more deserving” from occupying. They helped me personalize disability and disability pride in a way I never had before, seeing myself not just as disabled, but as disabled AND worthy - worthy of love, worthy of care, worthy of others’ time and attention.
One of my biggest regrets is that Tonia never got to see me embrace my newest diagnosis/disability - a diagnosis that, when I first mentioned to Tara that I suspected might apply to me, she replied, “I always thought you were, and so did Tonia.”
I want you to know, Tonia: You were right. I’m Autistic. And I’m proud of it. Thanks for helping me get here.
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[Image: A pink Post-It dated February 12, 2021 written by Tonia reads: We are worthy. No matter what. I love you.]
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K: Tonia, you and your sister have given me such a beautiful gift. Thank you for loving me so hard and so fully, and for helping me see that CP isn't something I need to fight or transcend; it is a wonderful, inextricable part of me. Of us. When I was considering this post, I thought of this poem I wrote in the friendship journal I gave you, and I thought I'd include it with this post as a testament to you and all that you have given me. Thank you, friend, for all that you have taught me about disability pride, and love, and friendship. I carry that with me always. I love you. To you who taught me to take my imperfections and hold them close, love them hard, who taught me that these unsteady footsteps were never imperfections to begin with— all along they were beautiful, details etched within my being, within my body, within my movements that make me whole. To you who taught me that I am as perfect as I need to be I give this back now— cradle it between us, this love, this knowing, this shared identity that has knitted us together.
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| [Image: A pink Post-It dated February 15, 2021 written by Tonia reads: Hi I like you a lot and you are not too much ever ❤ Me] *** Kayla: Friend from high school has a baby diagnosed with CP? Tonia Says ✔️ Friend who likes 911 and wants to write a fanfic featuring Christopher Diaz but wants guidance on how to not accidentally write a disabled character in a way that could be unintentionally offensive? Tonia Says ✔️ Missing my grandma and wanting to read back about how much her support meant to me with regard to advocating for my own needs as a disabled child? Tonia Says ✔️ Needing to rail against ableism and hear someone who voiced her frustrations in a way that aligned so harmoniously with mine? Tonia Says ✔️ Missing Tonia and wanting to feel closer to her? Tonia Says ✔️ It’s the epitome of unfair that Tonia is not here with us today, but one amazing thing is how she lives on through all of her work. Maybe that’s cheesy to say, but her writing voice is just so distinctively Tonia. Her creativity keeps me so engaged, and I can’t even adequately describe how quintessentially her it is. I’m so grateful that even though the universe decided to take her before anyone was ready, she left us with all of these beautiful gifts. She was the textbook definition of prolific. She poured her soul into everything she did. She really did teach me so much, and I believe it has not only made me a better therapist to read her work, but a more well informed person who can better practice allyship to those with disabilities that I do not share. What I also love is that there is Tonia content for any particular mood or situation. She didn’t shy away from the hard topics, but she didn’t shy away from joy either. She shared her whole self with us, and she changed people’s lives and opened their eyes to a new perspective that they otherwise might have never known. She did so much with so little time, and I am forever grateful for all of the time we chose to spend together. *** |
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| [Image: A pink Post-It dated March 15, 2021 written by Tonia reads: It's Monday -- day of supporting each other and our friends -- AKA every day ❤] *** Tara: I think it's only fitting to finish this post with Tonia's own words, so here's a favorite work of hers that really brings everything home: Love, CP by Tonia M. Chistle April 5, 2016 If we are raised To hate a thing That exists in us - That we cannot change - No matter what... What does that do? What does that do to our souls? What does that do to our minds? What does that do to our hearts? What does that do to everything That makes us us? What if, instead We are raised To love this thing That exists in us - To learn to work with it And learn, too, All of the ways it makes us Unique. What if, instead Of hating ourselves And raging against This part of our being - We stopped For just a moment... For as long as we could stand it... And just waited To see What would happen Next? What if, instead Of resenting Our very identities We celebrated? We passed along pride Forged out of necessity? Found not because we are Arrogant, But because we needed it To survive? (One.) Count the seconds (Two. Three.) With me - believe (Four. Five.) For these five seconds You are something. You are everything. Because when you love you You love me. Maybe you even Love CP. Because by loving you, you are loving That little girl, and that baby boy, Who can grow up Differently, knowing Different doesn't have to Mean alone. It means community. It means beauty. It means specificity. It means belonging. It means similarities In stories, In spasticities, In our dignities. We Deserve To find the truth Buried under All the lies. We deserve To love everything That makes us us To realize We don't have to remake Ourselves To fit the image of who we Are not. Breathe deep Speak. We are not Secrets to keep. |
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