10 Years Of Tonia Says - Favorite Posts

[Image: A white woman -- Tonia -- sitting at her desk grinning widely. She has brown hair and is wearing large black-rimmed glasses. She's giving a thumbs-up to the camera. Her laptop screen displays the Tonia Says Facebook pa

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Today marks the 10 year anniversary of the Tonia Says blog. If she were here, I know Tonia would be so excited to celebrate this day with all of you. In her absence, I am celebrating my sister and her blog by a month of weekly posts that are either inspired by Tonia or topics that she held dear. Look for new posts every Monday for the next few weeks.  ❤ Tara, Tonia's twin sister

The prompt for this week was: What Is Your Go-To Tonia Says Blog Post (Or Other Work By Tonia) And Why? Feel free to leave comments with your answers!

Note: Click on the blue or purple text to read the content mentioned. Thank you so much to all who contributed. 

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Emery's Picks:

Please see embedded links

This prompt was hard to answer because I’ve got different go-to Tonia Says posts for different occasions - sharing advice with nondisabled parents requires a different post than sharing with a friend an example of who Tonia was as a person, which requires a different post than reminiscing about my own memories with Tonia or processing my grief or seeking serotonin. So I’ve got several answers to share.

Seeking Serotonin: Absolutely no doubt about it, Tonia’s book Windows is the place to go when you need a boost of joy. I think this is true for a lot of people, but it’s especially true for me personally because Windows initially was a birthday present for me, based off a request I made to Tonia for a story about Francesca going to camp and maybe possibly could she include a character based off of me? (Brighton, for those curious.) 

Processing Grief: Straight to her poetry, do not pass Go, do not collect $200. Top poems for this are So, What’s the Hardest Part?, I’m So Mad, Finding Myself, and this untitled poem from 12/7/21. The 8th anniversary of Tonia Says post gets me in my feelings too, as do her books Quite Alive (which we read aloud together the first time I ever met Tonia and Tara in person) and Appearances and The In-Between (both of which she died before finishing).

Reminiscing: For this, I head to the Summer Therapy series from 2020, because the idea for the series came from a conversation between Tara, Tonia, and me. And while I don’t re-read them regularly, I have a feeling that The Fosters recap / analysis posts would also bring me some nostalgia, since that fandom is how I first met Tonia.

Education & Advice: My go-to links for sharing education and advice with the general public (usually parents of disabled children) are the Summer Therapy Series mentioned above and the Parenting Kids with Disabilities series. I’ve specifically pointed parents to the Surgery post, When Walking Is Overvalued, and When Therapy Teaches Compliance as well as both series in general.

Feeling Close: When I want to feel close to Tonia, the best way to do it is to read a book from the Disuphere series, any book, aloud with a friend and talk about it. In fact, talking about her writing is almost more important than reading it. Nothing pleased Tonia more than discussing her work with people. 

Another story that’s been keeping her close for me lately is What Makes a Family, a Criminal Minds AU fanfiction about the BAU agents as kids in foster care. (Of course, you are then legally obligated to read its sequels, What Unites a Family and What Breaks a Family. Just kidding.) Along with reading WMAF to us, Tara has been reading all of the author’s notes, which are deliciously authentic Tonia, especially the constant reminders that ‘you don’t even have to be logged in to leave a comment or review!’ I’ve been sharing my memories from the first time I read it - or rather, Tonia read it to me - and Tonia commented on it as she read. For example, groaning at herself for describing a character as having “a mixed complexion that suggested he was a melting pot of ethnicities” and scolding her character (and by extension herself) for insisting a traumatized child look the adult in the eyes. It makes it feel like she’s here with us. 

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Julie's Pick: 

Unpacking I Can't: A Series of Interviews

One of the most impactful posts is the “Unpacking ‘I Can’t’” series.

Each post is so validating to read, and gives different perspectives and experiences that each reflect some of what I’ve experienced with this as well. Whether using this phrase with well meaning parents or medical professionals, the consequences of being misunderstood or disbelieved when we say “I can’t” can range from injuring ourselves in an attempt to do something we know is either dangerous or impossible, to leaving us feeling unheard, lazy, and unnecessarily argumentative. It can lead us to doubt our own instincts, rather than to trust them more.

Tonia wrote about so many important experiences we go through as children and adults with disabilities. I’m grateful that this post is here for any parents, professionals, friends or acquaintances of children or adults with disabilities. But I’m equally glad it’s here for those of us living with disabilities, giving a voice and a space for our experiences, and our realities.

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K's Pick:

Crip Camp Reminded Me How Camp Changed My Life as a Disabled Teenager

I loved this story of connection for so many reasons. There is such vivid storytelling in this post, and she captures her emotions (and feelings of safety and belonging) so beautifully on the page. From a creative standpoint, I also noticed parallels to Windows (her fictional story about connection at a camp for disabled children), so it was fun to hear more about where she drew her inspiration from.

It also occurred to me, as I was reading, that Tonia paid this love forward to her community even decades later. When she writes of that feeling of safety, of belonging, and deep commitment to helping each other? That was at the center of her friendships. She always made sure we knew we were loved and safe ... and assured us in her gentle Tonia way that we belonged. ❤️

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Kayla's Picks:

Poem: More Like An Ode

Poem: Overriden

To answer this prompt, I was looking for a specific poem. More Like An Ode. I should have it bookmarked because I have never felt more seen than in those lines that stare into the void that is a state or county-mandated assessment for services and don’t blink. Like yes, sacrifice your privacy for some half-hearted “certainty” that you will get the services you need when you’re disabled. 

In my search, I stumbled upon the poem Overridden. It makes me furious, livid, and completely soul-crushed that Tonia's pain was ignored in the name of “protocol”. It’s a real wake up call that the people who claim to be professionals need to listen to their patients. There is so much hand-wringing over so-called “ethics” when what she went through is the most flagrant violation of ethical practice I can imagine. Since she was forced to go through it, I just want her pain to mean something. I know she has such a depth and breadth of beautiful content, but I think it’s just as important to look back at where she struggled due to some messed up “just following orders” mentality. At where the medical model and the people upholding it failed her. Because they did fail her. These people who were more concerned about checking boxes and keeping their job than the human life at stake. 

If the system is broken, say something or work around it. Bend the rules, so you don’t break the people. I’ve never met a piece of Tonia content that I don’t like, but I hope that other people can bring themselves to read what happened to her, imagine a fraction of what she felt, and know that it was not acceptable, and it continues to be unacceptable. 

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Tara's Picks:

When Accessing Basic Needs Is Anything But Basic

When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery

One of my go-to Tonia Says posts would have to be When Accessing Basic Needs Is Anything But Basic. It’s written in such an easy to read style, and it really just lays the groundwork for so many issues that disabled people face. I often find myself rereading or recommending it. I think this is one that Tonia was really proud of, and I’m happy to share it again here.

And as for a more personal choice, When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery. The way Tonia wrote this post always resonated so deeply with me. I felt like I was there with her, and it was such an honor to behold her child self. 

This is not about me, but I definitely named my last Christmas gift from Tonia Holly specifically because of this post. Because I wanted Holly to stop what was happening. Even though I knew she couldn't.

[Image: A close-up of an unsmiling brown-haired white woman -- Tara -- wearing glasses and an orange t-shirt. She is cheek to cheek with a brown stuffed sleeping yak -- Holly.]

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Thank you so much for joining us this week. Tune in next Monday for another post.

Next week's prompt is: Dear Tonia / Dear Tonia Says Free Write.

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 4th at 10 PM Central.