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Rebekah (she/her)

@sitting_pretty

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Narrating the forever both/and of disability, motherhood, and life in a body.

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This book – this imperfect, from-my-guts collection of words – heaved out of a body brimming, bursting, bubbling with complicated stories that ached to be told after a lifetime of being written over, ignored, erased – hurled into a world that was tilting, teetering, transforming in real time. A book that has been translated with care and attention into languages I don’t speak (Italian, Korean, Portuguese). A book that has been at the center of Big Read community conversations from Norfolk, NE to Cincinnati, OH and university common read programs from Bakersfield, CA to Miami, FL. This book that keeps trekking, trudging, traipsing along, finding her people – the ones who already knew in their bones, the ones who want to understand, the ones curious and seeking, bored and open, reluctant and ready. How wild that a book – a piece of one person – can sit with another person on the bus, cuddle with them in bed, speak to them while they’re folding laundry. I don’t know most of you, and also, a part of me does. And that does feel like actual magic – an impossible mystery. Thank you for being part of that.

Image Descriptions in the comments. An overhead view of Rebekah’s book, Sitting Pretty. Her hand is touching the bottom-left corner, and the pages are stuffed with colorful post-it notes.The cover is orange with scribbly text that reads “Sitting Pretty: The View From My Ordinary Resilient Disabled Body” surrounding the image of Rebekah sitting in her wheelchair with her arms stretching out, scribbles and sparkles tracing her wheels. by @sitting_pretty

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2 years ago

For at least a year, I’ve been filling a doc with bits of writing – messy fragments digging deeper in childhood illness, family, religion, identity, and so much about disabled daughterhood/motherhood. These stories are wobbly and fresh, don’t fix the world’s deep wounds, and aren’t for everyone. And also, I believe – at least some of the time – there is value in sharing them somewhere, somehow.

Ordinarily, these stories would end up here. And also, I’ve started to notice something in my body – a clamping up, heart pounding – like I physically couldn’t open up my hands to expose the still-muddy gems I was digging up. So much has changed – all around us, also within me – in the near DECADE (?!?!) since I posted my first square here. Can you even believe how much?? Gradually, a space that had long felt like a home for connecting over tender pieces of writing started to feel so big, so fast, so noisy. (Maybe this is just what it feels like to get older??)

So. Like many others, I’m starting a Substack. I’ll still be around on Instagram, but I’m building a new home for those stories that remain messy/tender/wobbly. I want to cultivate a space where we can move slowly and steadily, stay connected, and learn together how to tell stories that can continue to evolve/deepen, as the world inside and outside of us changes. I want to hold up the mismatched pieces and study them together – to say, THIS TOO. This is part of the story – of disability, of womanhood, of childhood sickness, of motherhood, of living in a body – too.

My initial plan is to share an essay (or two?) a month on Substack, but as I get into the groove, I’d like to play & expand – maybe a Q&A once a month? reflective videos? interviews? collaborative playlists? writing prompts? turning medical charts into blackout poems? – I don’t know yet. I’d love to hear from you in the comments – what would you love to see/read/hear/be part of?

If you were already subscribed to my (verrrrrry intermittent) newsletter, you should automatically be subscribed to THIS TOO. You can also sign up on my website, rebekahtaussig.com. More soon! Xoxo

ID in Comments A yellow slide filled with paint smudges, doodles, small icons, and photos of Rebekah – young and old – alone and with her partner and baby. by @sitting_pretty

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2 years ago

For anyone who’s forgotten or new or wondering – a starting place:

I am Rebekah Grace Taussig. The restless daughter of Good People. A scrappy misfit. A daunted optimist. A teacher without a classroom. A PhD poster child for imposter syndrome. A mother bewildered by the idea of Mother. A storyteller who can’t stop herself from turning the thing over and over and over, looking for the parts that are hidden, hiding, holy. I peek over the edge with wonder and terror. I live in a body that announces its difference, its misalignment with the world. A body that suggests it has no secrets, while holding a whispery trove. I listen to crime podcasts and make angel food cakes, hold onto anger and clothes with holes to mend. I can’t see the either without the or – can’t hold onto one without reaching for the other – always both/and. My body feels life as bleak and beautiful, a ragged edge with a deep inhale of joy. Always the same, always always shifting.

Maybe be a pal and write your own introduction in the comments? I would love to know – who’s here, how’s your body, how’s your brain, how’s your heart, what are you made of, what are you about, what are you listening to, tasting, doing with your hands, what do you see from your perch in this universe?

Also, please enjoy all of these beautiful black-and-white photos taken by the outrageously skillful @anastasiapagonas, as well as this bit of sparkly artwork in the cover photo from one of my all-time favorite creators, @caitlinhasfeels, who ALSO just made me a new website, www.rebekahtaussig.com. I have the most talented friends.

Image Descriptions in the Comments A slightly blurry black-and-white photo of Rebekah, a white woman sitting in her wheelchair with her hair pulled back and a few loose strands framing her face. There is a collage of colorful clay objects and paint splotches arranged on top of her head like a crown. An orange banner with text that reads REBEKAH TAUSSIG is placed over the image. by @sitting_pretty

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2 years ago

I wonder when my body and brain and heart will be able to absorb the last few days. We’ve been working on Being Heumann for years, and just a couple of days ago, the movie officially made its way into the world opening night of @tiff_net. I consider myself an earnest optimist who doesn’t generally expect stars to align, but hwow, the stars have lined up and sparkled bright the last few days. Almost like a pushy disabled woman is working behind the scenes to pull the planets into line and make the impossible happen. Our ache for Judy’s physical presence with us is deep, and also, her spirit is so clearly radiating around us.

#BeingHeumann will be in select theaters November 6th and available to start streaming on @AppleTV on November 13th. by @sitting_pretty

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18 days ago

Friends! I co-wrote a movie!

I’ve watched the trailer for BEING HEUMANN roughly a million times now, and the tears just won’t quit. Not because it’s sad. The movie is actually the opposite. It’s hilarious, irreverent, scrappy, empowering. Also, deeply human. I mean, just wait until you see it.

I think the tears might go 40 layers deep. I keep picturing my younger self with my freshly fitted AFOs sitting in a theater taking in this story, these bodies, this history – which makes me think about little you, too, and also, Judy. I wish every version of her was here to take in this moment with us. I’m also livid that there are politicians today actively trying to undo pieces of the very legislation Judy and her cohort threw their bodies on the line to make real. I’m also so proud that I got to be a part of the making of this film – co-writing the script with @sianheder.director was a thrill and an honor. You see? 40 layers deep.

I’m so eager for more people to know this story and to witness the immense artistry that went into telling it. The humans who devoted themselves to the making of this film did stunning work, and good storytelling makes us feel things. In fact, good storytelling changes the world.

#BeingHeumann will be in select theaters November 6. You can start streaming on @AppleTV November 13. Let’s show all the movie making people of the earth that this is the kind of storytelling we show up for.

Video/Image Descriptions Below Ruth Madeley as Judy Heumann sits in her wheelchair on a busy street with her hands raised up in protest, as a large car approaches her. Text on the image reads: An Apple Original Film, Toronto International Film Festival, BFI London Film Festival, Based on a true story (but “story” is crossed out and replaced with “revolution”), from Siân Heder, director of the Academy award-winning best picture, CODA, BEING HEUMANN, screenplay by Siân Heder and Rebekah Taussig, directed by Siân Heder, in select theaters Nov 6 streaming Nov 13. by @sitting_pretty

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a month ago

“As we move through disability pride month – this one marking 35 years since President George H.W. Bush signed the ADA – it is not hard for me to feel like the story of disability pride is being choked out…The stories of disability expendability, disability too expensive, disability who’s that? feel loud. Thinking about just how hard disability advocates fought to forge these supports and services into existence – against all odds, against powerful resistance – makes the threats to them terrifying, heartbreaking, breathtaking.

And also. There’s the part of our history – our pride – that cannot be disassembled so swiftly. While the ADA is one of the most comprehensive pieces of protective legislation for disabled people in the world, it didn’t appear out of thin air. It was built on thousands of stories, told and received. I mean that literally. In the years leading up to the sunny July day when the 41st president of the United States signed the ADA into law, advocates gathered thousands of stories from across the country told by disabled people and the ones who loved them…These stories did more than change the law, and the law did more than change policy. Because treating humans with dignity teaches them (reminds them?) they deserve to be treated with dignity. Because storytelling is transformative – to the ones doing the telling and the listening. Because storytelling is contagious – listening to you tell your human story reminds me of my own human story. And this is the opposite of dehumanization.”

Read the whole Substack essay –
“Let Me Tell You a Different Story: The Tool I Refuse to Belittle or Relinquish On the 35th Anniversary of the ADA” – at rebekahtaussig.substack.com. (And read to the end of the essay for an invite to a virtual storytelling event I’m hosting with @ihumancentereddesign in celebration of the 35th anniversary of the ADA.)

ID in Comments Rebekah sits in her wheelchair looking into the mirror while she takes a selfie with her 35mm
camera. She's sitting next to a cluttered dresser wearing a white dress with little lions and tigers
and little flowers printed on it. by @sitting_pretty

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a year ago

“I’m a Kurt Vonnegut character, ‘unstuck in time.’ I’m an Alice Wong oracle – a ghost from the past & here to testify to a future that is closer than the people of my planet seem to understand. Have I gotten grandiose enough yet? I suppose I’ve been feeling a bit grandiose. Or, at least, urgent. As my body is slipping & sliding through time, I’m watching my government carelessly sweep through, cut, & destabilize services across the country that support us in our inevitable vulnerabilities over the span of a lifetime in these bodies of ours…

Maybe it’s the company I keep, but honestly, the older I get, the more ubiquitous, inevitable, & utterly commonplace disability seems to be. There are 10,000 things that make us different, but one thread that holds every human together is the fact that we live our entire lives linked to one body, & those bodies change, age, get sick, & fall apart over time. Each of us will inevitably require increasing levels of support & care across our lives. We’ll love people who require support & care. Sometimes I feel like I’m pleading with first-class passengers on the Titanic while they recline in the smoking lounge – Water is rushing into the lower decks! We need more lifeboats! Everyone chuckles – Silly girl, have you seen how pretty & big our boat is?

Maybe it’s crip time itself that allows me to slip into some kind of wizened perch – the ancient Rebekah watching from somewhere above or beyond present Rebekah – & she shows me a glimpse of all of us – I mean every single one of us in our baby bodies, our disabled bodies, our sick bodies, our old age bodies – all of us pressed right up against the organic material that makes up our vulnerable existence. How often it starts, ends, & yes, even middles with needing someone to wipe our bum. Help us eat. Listen to us marvel & grieve the ways our bodies are changing. Find ways to understand us – to keep listening – even when we lose the ability to form the words. Even when we never had words to begin with.”

The whole essay “A Crushingly Mundane Wonder” is at rebekahtaussig.substack.com & linked in my stories. I wrote it months ago. Feeling especially relevant today.

ID in Comments Rebekah lies on her side next to her new baby. He is wrapped in a blanket, holding onto her thumb. You can see her belly, still stretched out form when he was living. by @sitting_pretty

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a year ago

Had the opportunity to shoot another spectacular KC Library event 😊

@sitting_pretty came to discuss her books Sitting Pretty and We Are The Scrappy Ones with many smiling faces to welcome her. taken in Central Library (Kansas City, Missouri) by @sitting_pretty

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a year ago

Today is the day! We Are the Scrappy Ones is officially making its way into the world! This book started as a poem I wrote with the hopes of offering a sort of anthem of belonging to the world of disability – a model of disability pride – an invitation into a deeper belonging within a dynamic, vibrant group of people attached to a rich culture and powerful history.

Turning this poem into a picture book has been a ride, and there have definitely been days when I’ve (oh-so predictably) second-guessed myself. Is this the right time for a book like this? Are these the right words? Especially this word – “scrappy” – blazed across the cover. A word I hold so close across the arc of my life. But what if people misunderstand the story I’m trying to tell?

I have to say, since the start of this year I’ve felt a roaring affirmation that this is the book I want in the world and these are the words I want to use. Something about the juxtaposition of very real and pressing threats to disability rights alongside the verve and passion I see and feel and recognize in this community I love. I long for a world where there was no need to fight for our survival. And also, I am in awe of our survival. I feel my own scrappiness, my defiance, my cripple punk heart kicking, and it reminds me of this greater legacy of scrappiness that came before me. But maybe more than anything, I want this book to serve as a reminder to all of us – DISABLED LIFE IS VALUABLE. “Some days we might feel like we don’t belong, but darling, we are the very blueprints of Home.” This is true everyday.

Thank you to all of the creative talent and dedicated passion that went into bringing this book to life – the absolute star Carol Hinz at @LernerBooks, my true-blue agent Laura Lee Mattingly at @PresentPerfectLit, and the one who animated all my abstract ideas with whimsy, my fellow sick-kid-club collaborator, Kirbi Fagan. Here’s to reminding ourselves, reminding our children, reminding the world at large – We are “as dazzling as a sky full of stars,” worthy of dignity, belonging, celebration, care and love, love, love.

Image Description in Comments A photo of Rebekah, smiling and looking to the side as she sits at a table signing copies of her new picture book, We Are the Scrappy Ones. by @sitting_pretty

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a year ago

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2 years ago

“Lately — in quiet protest of the chaotic state of the world, the algorithms shaping our realities, and the ‘department’ recklessly tearing through our government and all that destruction symbolizes — I’ve found myself defiantly delighting in all the inefficiency within and around my being. There is something about this word — efficiency — and the unquestioning value of it that kicks up a spirit of protest in my disabled mother soul. Of course, I understand that ‘efficiency’ is a word that takes many shapes and forms, some of them beneficial, yes, yes, sure. And also, I’ve been driven by a guttural instinct to plunge my oar into the rushing current and slow my boat — to figure out where I am and how to possibly proceed.”

In my Substack this month, I bring you seven portraits of inefficiency – seven tiny moments that grounded me in the midst of the chaos of this time. “The quest is to remain human, part of a bigger ecosystem, so connected to the earth I can feel it beneath my fingernails, in tune with my immediate surroundings, open to surprise, deliberately slow, defiantly curious, relentlessly steady, practicing for flexibility, alert and very much alive for whatever comes next.”

You can read the whole essay “A portrait of inefficiency: In appreciation of the curious, the tiny, the slow, the flexible, the winding,” at rebekahtaussig.substack.com or find the link in my stories.

Image Descriptions in Comments Rebekah, looking down and sitting in her wheelchair, points a 35mm camera at a long vertical mirror. Behind her, there is a brown jacket hanging on the side of an open door and a giant wall calendar. The left edge of the photo is burned bright orange. by @sitting_pretty

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2 years ago

The night I heard about Texas v Becerra, I started writing. It felt totally impossible and weirdly inevitable and so surreal that almost 50 years after disabled protesters put their bodies on the line protesting for the passage of Section 504 – this little bit of legislative language that protects disabled people from discrimination – that politicians would be actively seeking its end. In case you hear anyone rewriting history, the literal language they used in their court filing under their ““DEMAND FOR RELIEF” is – “Declare Section 504, 29 U.S.C. 794, unconstitutional.”

And as my brain swirled into peak panic, I kept thinking – they cannot undo the story that disability activists have already put into the world – that we belong here – we are a vibrant, essential part of our communities, and the world should match that belonging. We don’t stop knowing and believing this, even when powerful people are trying to force us into a different story.

So many Americans don’t know anything about the history of disability rights in our country. It wasn’t included in our history books, and it’s not something most educators have known to teach us about. I grew up with a physical disability and I didn’t know about the history-changing Section 504 Sit-In until I was in my 30s.

I want everyone to know this story – to know the names & faces of the people who fought for us – to feel a part of this fight – because disability rights are human rights. As I finished up the edits on this piece, I learned about the 5 major airlines asking an appeals court to “hold unlawful and set aside” the recent Department of Transportation rule designed to make air travel safer & more dignified for disabled passengers. This is not a niche story about the plight of “those people.” This is our story. The disabled protesters who came before us went to battle for a law that looks after all of us, even the corporations and politicians resisting it all along the way. Disability is an inherent part of the human experience. Every move against disability rights harms all of us.

You can find my full essay linked in my stories or search for it with my name and “Section 504.”

ID in Comments Black and white photo of disabled protesters responding to questions from the press during the Section 504 sit in. From left to right, the protesters include Hale Zukas, Ron Washington, and Judy Heumann. Behind them, Lynette Taylor provides ASL interpretation. by @sitting_pretty

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2 years ago