10 Years Of Tonia Says: Everything I Know About Disability Pride, I Learned From Tonia

 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]

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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 ❤]

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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.

10 Years Of Tonia Says - Tonia's Last Blog Post Idea

This week’s posts contain difficult themes and language. Please read with care.

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Tonia’s last blog post idea was in response to medical professionals who – after giving her a terminal diagnosis – told her to “have hope and hold on for others.” She felt this was harmful and wished to explore it in a blog post. 

While we were not able to address this topic in the fierce, tender and nuanced way that Tonia would have, we hope she would appreciate our efforts.

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[Image: A white child with brown hair – Tonia – sits in a child-sized rocking chair while talking on a rotary phone. She is wearing a red sweatshirt, blue jeans and white socks and tennis shoes.]

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Tonia, 

Let me start with reminding you how incredibly proud I am of you for your strength and how hard you fought through the last year of your life. 

You did not have to do that, but you did –and you did it for yourself and for us. I know that must have been such a scary and difficult choice for you to make even when all you wanted was more time. (We had a whole extra year with you. That’s a lot of days!) 

Now– I'm so sorry the medical professionals who should have been there for comfort and support during the hardest part of your life invalidated your feelings and made you feel like you had to hold out hope when reality was what it was. 

The truth is? You were hopeful. Choosing help was hope. Making those difficult choices for the last year was your way of holding on for us. Accepting the reality of your prognosis did not make you any less and there is strength in facing an impossible reality and calling it what it is. 

You did absolutely everything right, no matter the outcome.

Love, 

Alyssa

***

Dear Tonia,

Let’s be honest - that’s bullsh-t. The thing about terminal illness is that there is no hope anymore. Not like people mean when they say that. Not hope for a cure or recovery or magical healing. You were going to die. It couldn’t be stopped or even postponed all that much by that point. 

It’s a weird and scary thing to come to terms with, and I know you spent a lot of time trying to do just that - grapple with the fact that you were dying much, much sooner than you wanted to. That you were dying without accomplishing all of the things you wanted to. That you were leaving behind people you loved and a life that you had worked hard to build that felt as good and sweet and safe as you could make it. 

Dying sucks. You didn’t want to die. But you were. And you knew it. And people telling you to “have hope and hold on” were just trying to avoid facing that truth themselves, because no one likes to look at death. 

As for holding on for others, well, sh-t. First of all, it’s impossible to stop the progression of disease (because, hello, that’s not a process under conscious control). You would if you could - not for others, but for yourself. See aforementioned ‘did not want to die’ point.

But secondly and more importantly, you spent the majority of your life in service to others. Of all the things you get to do solely for yourself, how you want and need to, dying should be it. Can’t they let you die in peace without hauling out the parentification trauma on your goddamn deathbed?? 

We all know you would have stayed for us if you could have. You told us as much. In fact, you told us you’d be staying even after death - even those of us who don’t believe in that ;) 

You weren’t dying because you weren’t “holding on” hard enough. You were dying because you were sick. Even sick, you were holding onto life with everything you had, even when it was killing you. And my love, I am so grateful I had the chance to be there to give you permission to let go.

“So let me say before we part

So much of me

Is made of what I learned from you

You’ll be with me

Like a handprint on my heart

And now whatever way our stories end

I know you have rewritten mine

By being my friend”

Love always,

Emery

***

My beautiful friend—

When people tell you to hang on for others,

I want to scream into a thousand pillows,

because don't they see?

Don't they see how hard you're fighting?

Don't they see how hard you fought

to be here and to stay here?

I want them to see what I see—

That you hung on from Day One,

when you came into this world before your tiny lungs were ready to breathe.

Through trauma after trauma, 

treatment after treatment,

You hung on.

I want them to read the note you left me and your sister,

March 22nd, 2022, 11:57 p.m.:

"Never doubt how hard I'm always willing to fight to be here with both of you."

I never doubted. 

And in the end,

when your body gave way,

I hope your great grandparents were there to greet your spirit—

To wrap their arms around you as you wheeled your way to what's next.

(Yes, wheeled—ableist tropes have no place in your Afterlife.)

I hope they told you that you did so good—so, so good.

I hope they told you that it was okay to let go, and that you are enough, 

and I hope they gathered up all the light and love you brought to our world

and surrounded you with all that you gave us.

My beautiful friend—

In the words of one of my favorite writers,

"If sheer force of will and love could keep a person here ..."

Tonia, if your will and your love could have done it,

You. Would. Have. Stayed.

And that's the thing about love ...

I feel you here still.

I feel you all around us. 

I hear you saying ...

Love did keep me here.

In your own words again (because oh, how I cherish your words)—

"A love like that doesn't stop just because a life does."

Love,

K

***

Dear Tonia,

They say life isn’t fair, but death isn’t either. It isn’t fair that you had to go through so much pain. It isn’t fair that your wishes were not respected and at times not even asked about. God, it’s not fair that you didn’t get more time. 

Still, it’s beyond messed up that you were viewed as some sort of bizarre through line by these people who told you to hold on for others. As if living was somehow within your control. As if your pain was less important than what you could do for other people. 

Don’t get me wrong, Tonia, you lit up my life and cracked my world wide open. But if I had been fortunate enough to be at your bedside in those last few moments, I hope I would have found the strength to tell you something similar to what I told my grandma the last time I saw her before she died. 

I told her that we’d be okay, and I thanked her for everything. The first one is the truth (mostly. Depends on the day). The second part is woefully unspecific but meant with my whole heart. There’s no getting around the fact that death is hard for the loved ones that are left behind to make sense of a world without a person that they hold so dear. 

Even so, dying was the thing that was happening to you. You should not have been guilted about circumstances that were beyond your control. Those so-called professionals should not have put words in your sister’s mouth. It is toxic and harmful to say something like this to a dying person, no matter how well-meaning a person’s intentions may be. 

I’m sorry you never got to write a blog post about this because I know you would have knocked it out of the park like every other blog post, adding nuance to the topic that I can’t fully understand because it hasn’t been my experience. 

Can’t wait to read about it and all of the other blog posts and NaNos and everything else you’ve been up to whenever we meet again someday, though. 

Love,

Kayla

***

Hi ❤

It’s been awhile since we’ve heard those words, but I’m still mad about them. 

It’s so far from how I felt. 

It was rude of medical professionals who didn’t even know us to assume that I would want or expect something impossible from you. And it was unspeakably insensitive of them to ask anything of you, honestly. 

This journey was yours to take alone, and I still ache at how lonely it may have felt for you. 

All we could do was show up however we were able and attempt to pour a lifetime’s worth of love, laughter, nighttime chats, hand squeezes, reading out loud, singing together, hugs and kisses into what time we had left to physically exist in the same space together.

You held me while I grieved. 

I held you while you grieved.

When you were scared, we thought of the safest place we knew. We decided that was where you would go.

Because it wasn’t about me. It was about us. It was about you. 

And while you would never be ready, it was about making it safe and comfortable and possible for you to die when the time came. 

I’ll never understand what that process was like for you. But I hope you felt centered in every single sacred moment.

I’m so very proud of you. 

Love,

Me (Tara)

***

Thank you so much for helping remember and celebrate Tonia. Tune in next Monday for the final 10th anniversary post. 

Next week's prompt is: Everything I Know About Disability Pride, I Learned From Tonia /  Tonia Says. 😉

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 25th at 10 PM Central.

10 Years Of Tonia Says - How Do You Combat Internalized Ableism?

1751 words

8 minute read 

Here we are again for another week, celebrating 10 years of Tonia Says! 

This week's prompt is: How Do You Combat Internalized Ableism? Feel free to add your thoughts in the comments! 

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[Image: A selfie of a white woman -- Tonia -- smiling a closed-lipped smile from 2016.]

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Julie:

Tonia and Tara were the first people to introduce me to the term “Ableism”. I’d never heard this term before, and hearing it was… interesting.

Of course, with my lifelong physical challenge, I’ve experienced “ableism” likely more than I ever realized. It’s a part of what happens when moving through a world built for the ‘majority’.

Because the term is still so new to me, “Internalized Ableism” is like “Level Two” of ableism.

1) What is Ableism?

2) How has that also been internalized for me?

I think I’m going to start with a formal definition.

Ableism:

(Merriam-Webster) Discrimination or prejudice against individuals with disabilities.

(Oxford) Discrimination in favour of able-bodied people.

When I think of internalized ableism, the question I most ask myself, that takes the most effort to let go of, given the complicated nature of my severe and chronic fatigue, in combination with other health issues, is “Am I legitimately tired (or sick, or injured or symptomatic…) and needing more rest and less of certain activities, or am I being lazy?”

Many times, I know the answer to this question is: Yes, what you’re feeling is true fatigue, injury, or illness, and your judgment call for more or less rest and less or modified activity is wise. But deciphering the amount and nature of activity or rest can be difficult, as sometimes increasing activity CAN push things in a positive direction.

When I’m being plagued by self-doubt in the middle of a dilemma like this, I often picture how I might react to a friend in similar circumstances, if they were to describe to me how they were feeling. When I hear a friend struggling with similar physical, mental or emotional struggles, I will much more easily validate their feelings and their dilemma, and encourage them to take the rest they need, and gently test, as they feel ready, what they may be able to handle.

If I’m not able to work through my doubts by picturing what I might say to a friend in similar circumstances, nothing is quite as validating and helpful as speaking with someone else who is facing or has faced similar challenges. It is SO much easier to let go of internalized ableism when I am speaking to, seeing or reading about a similar experience to my own!

It’s why I’m grateful for those in my circle who also have CP, disabilities of different kinds, and life challenges of different kinds.

Thank you so much, Tonia, for filling your blog with so many of your personal experiences, and opening a window of opportunity for both the disabled and able-bodied community to see and hear through your experiences, and those you’ve invited to share what life with a disability is like from the inside.

A couple mottos that have helped me on tougher days:

“Resting today, is investing in a better (feeling) tomorrow”

“My value is not in what I do, but who I am”

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Kayla:

“You shouldn’t be using that stall. That’s for handicapped people.”

Although I wouldn’t learn the word to describe this random woman’s comment to me in a Perkins bathroom when I was about seven years old until much later, this was the first instance of ableism I remember experiencing. And boy, is it an understatement when I tell you that it wasn’t the last. 

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“You could do it if you just tried; you aren’t even trying.” 

“I'm unable to provide you with details and complete assurance about the level of accessibility throughout the tour.”

“Before I talked to you, I thought you were [the r-word].”

These are just three examples of many instances of ableism I have experienced, as I’ve been disabled my whole life. Being treated this way by strangers, and sometimes even dear ones who don’t realize what they’re doing until I explain, absolutely takes its toll. [At the time of this writing,] we’re nearing the end of Disability Pride Month, and it doesn’t escape me that as a disabled bisexual person, I heard way more about LGBTQ+ Pride Month than I ever did about Disability Pride Month. (And trust me, it’s not due to a lack of following disabled content creators, who were pretty much the only people who I DID see posting about Disability Pride Month). 

So, how do I deal? One of the biggest parts of my disability identity development that really helped me see things in a new light was making other disabled friends, but this wouldn’t happen right away. There were some other disabled kids in school with me growing up, but I was always in mainstream classes, and I barely ever saw or interacted with them. What’s more, I’m sure a part of me avoided contact with them because I wanted in the worst way to be able-bodied. 

The problem with allowing that want to fester, though, is the fact that it’s never going to happen. It is not useful for people to feel bad about me, the disabled kid orphaned at two years old, because pity doesn’t change anything about my situation. I can acknowledge the tough parts while also recognizing that I still have privilege, power, and a voice. My grandpa who raised me never did so with kid gloves. He’d joke that the speech therapists taught me too well because now I never stop talking, but one way I combat internalized ableism is by using my voice. Anyone who is friends with me can bet their bottom dollar that they will be invited to a non optional crash course in Ableism 101. A not insignificant part of the problem with ableism is that able-bodied folks are often not malicious, simply oblivious that what they’re doing is ableism. 

By using my voice and any platform that I have to share why certain things are ableist, I feel like I’ve left the world just a little more educated on matters of ableism than I found it. 

Disabled friendships were crucial to my disability identity development. No one gets disability like my disabled friends get disability. Through cultivating these beautiful friendships with people that I hold dear, not only do I find myself educated on aspects of ableism I was unaware of due to not experiencing them directly, but I have also discovered language to describe my experience that I didn’t even know existed. Just recently, I was describing how sometimes it takes me some time to figure out exactly how I want to distribute my body weight and balance when I’m going down a step to make sure that I don’t fall or lose my balance. My awesome friend Tara not only knew immediately what I was referring to, but helpfully supplied me with the term motor planning. That is exactly what I do. Although I will still most likely have to explain this term to any able-bodied folks I use it around, it is such a validating experience to have a shared language with folks I share a community with. 

It’s still a battle. No matter how many disabled folks are developing a platform through social media these days, the ADA was still only passed in 1990. I have disabled friends who are older than the ADA. If I had been born seven years earlier, there would have been a part of my life where I was not protected by law. 

And even though the ADA is there, it’s still not perfect. Disabled people still do not have marriage equality if they lose their health and financial benefits the second they are married. Disabled people still frequently have to meet a certain low income requirement in order to qualify for services. There is a caregiver shortage. It’s exhausting to have to fight systems for basic equality and deal with societal attitudes and stereotypes, from people that say disabled people don't contribute to society, to people who simply view us as inspiration porn to make them feel better about themselves. 

Even so, I am always comforted in the knowledge that I am not alone in this. I am forever grateful to Tonia for always making me feel seen. I am forever grateful to Tara for carrying on her legacy and making me smile every day. 

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Tara:

To combat internalized ableism, the importance of disabled friendship cannot be overstated. When encountering ableism of any kind – whether it be Original Recipe Ableism:

Able-Bodied Person Exclaiming To A Disabled Person: You’re too pretty to be in a wheelchair!

Lateral Ableism:

Disabled Person To A Fellow Disabled Person: That accommodation is not for you!

Systemic Ableism:

A lack of ramps or railings or the presence of steps; a broken or nonexistent elevator in a public place.

Internalized Ableism:

Disabled Person Telling Themself: I’m so stupid and lazy, I can’t believe I didn’t complete that task!

In each of these scenarios, the innate understanding of disabled friends is so crucial.  We have a “Come As You Are” mentality that we honestly and truly mean. The gentle space we allow each other to process, yell, cry and rant – or to process, yell, cry and rant for each other – is so intensely healing. I love my disabled friends.

But this is Tonia Says. And honestly, one of my biggest ways to combat internalized ableism is to remember Tonia’s words. To listen for her voice.

In a personal note from 2019, she wrote:

When you doubt yourself, remember your health and peace of mind and safety all matter. You matter. You should not have to submit yourself to awfulness and you DON’T [deserve it]. 

You deserve kindness, dignity, respect, accommodations – LOVE. Because you ARE worthy of all that and more.

❤️,

Me

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Thank you so much for helping remember and celebrate Tonia. Tune in next Monday for another post. (Next week's post will feature difficult subject matter. Please read and write with care.)

Next week's prompt is: Tonia’s Last Blog Post Idea: I Am Dying, And People Keep Telling Me To Have Hope And Hang On For Others. (Write a post or a letter responding to Tonia.)

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 18th at 10 PM Central.

10 Years of Tonia Says - Dear Tonia

Thank you for joining us again to continue the celebration of 10 years of Tonia Says. 

This week’s prompt is Dear Tonia / Dear Tonia Says Free Write.

I feel so grateful that our friends have taken time out of their busy schedules to think about Tonia and, in this case, write directly to her.

Feel free to share your feelings in the comments. 

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[Image: A smiling white woman with short hair -- Tonia -- holds a small green stuffed dragon next to her cheek. She is wearing a gray v-neck t-shirt with the words Up North on her right upper chest in green situated inside a green silhouette of the state of Minnesota. The silhouette is surrounded by green pine trees.]

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Dear Tonia, 

It’s hard to believe we are celebrating 10 years of Tonia Says! The work you did and continue to do has changed so many lives; even now people are still discovering your work and interacting with it, and that is so amazing. 

I hope you know just how much you are loved and missed. You left such a big impact behind; we still feel you here with us everyday. Sometimes, it still doesn’t feel real because of how present you still are in our hearts. 

Love,

Alyssa

***

Dear Tonia, 

Honestly, I don’t know what to say here. Some things seem too obvious. Others, too complicated to fit in a blog post. Still others are too sacred to share publicly. I thought about sharing memories, but let’s be real, your memory was way better than mine. If I asked, “do you remember…” the answer would be yes. 

I guess I’ll say the obvious things: I miss you. I love you. I feel so lucky to have known you. I feel even luckier to have met you. I wish I had biked to your apartment that random Saturday that started our weekly video chats, because I wish like hell the first time I met you in person hadn’t been in the hospital. But we still made it good, didn’t we? As good as it could be. And I’ll never regret a single second we spent together, whether we were reading your books or sleeping. 

Thank you for not dying until I got there. I told Tara the other day that my whole drive up, I was slowly clicking the cruise control a notch higher every few miles, the fear of speeding shrinking as the fear of losing you grew. I was probably going nearly 90 mph at one point. But I didn’t get a ticket and I made it in time to say goodbye to you, so it all worked out, didn’t it?

That’s a morbid way to end this letter, so I’ll try for something a little more fun: Tara and I are going to read a new book about a high school production of Wicked and the fight to play Elphaba. I wish you could hear it. We’ll tell you all about it.

Love,

Emery

***

Dear Tonia,

There are so many things I wish I could write to you, but I think I’ll write about something I’m sure you would share my joy in…

This year, after 13 years of waiting and wishing to return, I made it back to a wheelchair sports camp in Minnesota. It was a dream come true to get there, after so many years of dreaming and even planning for it. 

I had no idea yet what an impact the Camp experience also had on your life, but I thought of you especially, every single day I was there. I wish you could have experienced it with me, Tonia. But I’m even happier to know now, that you DID have a life-changing Camp experience, which you wrote about both in your blog and in your fictional works. 

Tara and I are reading “Windows” now, and I’m re-experiencing the joys of my dream-camp-week, as well as enjoying the story you wrote, and hearing little pieces of real life events that wrapped their way into your story.

Thank you for our friendship, for your love, and your gentleness. I loved seeing how much you cared about and for others, even while facing so much yourself. I loved seeing you find joy in small things - beautiful, delicious, or just plain silly! I always hope that my life reflects some of the beautiful qualities I had the privilege to see and experience in you. 💛

~ Julie ~

***

Dear Tonia, 

I don’t remember if you were around for this particularly foolish social media trend, but you know the one where people tie water bottles to their ceiling fan, blindfold themselves, and then try to dodge them? As you can probably imagine, this does not end well. In fact, people inevitably end up getting beaned in the head by a water bottle. Sometimes it’s multiple in a row, back to back to back. I was saying in therapy today that I wish someone would turn off the ceiling fan that is life without you and the other loved ones I’ve lost and the state of the world and the inaccessibility my friends and I are faced with at seemingly every turn. Then there’s a little bit of guilt involved, too, because you’re gone, and all you wanted was more time. I want to make sure I’m using my time well, in a way that would honor my friendship with you. 

The thing is, you were such a great friend. I read some other folks’ tributes to you as I was thinking about what I had to say for this post, and just, across the board, your impact is immeasurable. I wish I had your patience as you gently guided abled folks to the realizations that they needed to have in order to better support disabled people. I really admire all of the emotional labor you put into explaining things in a way that people can understand without having experienced it themselves. You have opened my eyes to certain aspects of disability culture that didn’t directly affect me, so I wasn’t aware of them before you told me about them. 

I find myself not really knowing how to end this post, and then it hit me that some things don’t have satisfying endings. Sometimes things just end, and we have no choice but to figure out the next part by ourselves. I think about all the things that have happened since you died that you would have loved, and it makes me smile any time one of those signs from you shows up to let us know that you’re still here in your own way. It’s not the same, but I cherish your memory always. 

Love,

Kayla

***

Dear Tonia –

I just woke up from a nightmare where we were asleep in a strange house, when someone woke me to tell me that four tornadoes were headed straight for us. (I know, I know – too much 9-1-1: Lonestar…) 

When I looked out the window, the sky was the jeweled purple of a bruise, and lit up with brilliant flashes of lightning. And four tornadoes were indeed gliding toward us at a clip.

I hurried to wake you, but you were difficult to rouse. I begged you, “Tonia, please wake up!”

Finally, you did. I explained about the tornadoes and that we had to get to safety.

You, the person who used to hunker down at the first mention of severe weather, looked me in the eye and said, “I think I'll stay here instead.”

For a moment, I was incredulous. I sputtered, “After a lifetime spent meticulously preparing for something like this, this is what you're doing?”

And you calmly said, “Yes.”

“Scoot over,” I replied.

“Wait. Really?” You asked, your eyes full of wonder.

And we locked the door and huddled together as the walls shook and the wind screamed like a high speed train.

Except somehow, you are gone and I'm still here, and I still don't know what to do with that.

It still feels like you're just in the next room. 

But if that were true, I would have definitely bugged you by now. 

My mind just cannot comprehend that you're not physically here. And maybe, on some level, I don't want it to.

I love you. I'm so proud of you. 

Love, 

Me (Tara)

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Thank you so much for helping remember and celebrate Tonia. Tune in next Monday for another post.

Next week's prompt is: How Do You Combat Internalized Ableism?

Please send any submissions you would like included in next week's post to tarasays1@gmail.com by Sunday, August 11th at 10 PM Central.

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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8 minute read

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.