Dear Son of a Disabled Woman

Disability doesn’t have to mean to you exactly what it means to me.

Folks using screen readers and anyone who prefers to listen — there’s an audio player bar just below this paragraph, with a play button on the far right. Please let me know if you have any trouble with it.

Rebekah sits in her wheelchair next to her son, their heads touching. She is looking toward him as he holds a 35mm camera up to his face, taking a picture of the two of them in a long mirror. Beside them and reflected in the mirror, a cluttered dresser.

Content warning: this essay examines ableist beliefs as they relates to parenthood.

What used to be animated, indecipherable monologues have evolved into elaborate stories, and I’m embarrassed to admit my surprise as I’ve realized – your point of view is different from mine. Of course it is! But it’s true – before hearing you tell your own stories, I never considered: I have my story as a disabled parent, you’ll have yours as the child of a disabled parent, and these stories are not the same. 

I’ll admit, this realization came with a wave of horror. Maybe in part because reclaiming the story of disability – from mainstream culture, from my family of origin, from the story I grew up telling about myself – became such a defining part of my personhood. There are reasons and high stakes that drive me to hold tightly to that story. 

But also. I remember the Instagram post that the influencer with a massive following shared about her disabled mom. Very carefully, she laid out a series of tiles with tiny quotes pulled out of big studies that pointed to her mother’s disability as the source of her inability to be cared for – her automatic instinct to be everyone’s caregiver. The comment section exploded. In solidarity. Like a chorus of children of disabled parents all raised their hands and said, “Me too! I’m fucked up because of my parent’s disability, too!” 

I couldn’t look away. I think I read almost every comment. And there were hundreds. This was at least two years ago. Those comments still live in my body. 

To be fair, there were a few comments voicing a different experience with a disabled parent. There were a few folks that grew up to value their parent’s grit and ingenuity, playfulness and love. Or who didn't really feel like their parent’s disability carried much weight in the totality of being raised by them. They felt like a few slippery fish in a giant school moving in the same direction.

Here’s what stands out to me now: disability is an easy scapegoat. Notice, it’s the disability itself that’s blamed in these narratives. Not ableism (internalized or otherwise), not inaccessibility, not lack of support, not parents terrified of child protective services questioning their legitimacy as caregivers. One layer of a parent extracted from the complicated mess of scrambling-rambling relationships, histories, ecosystems. The influencer's post passively drew a single and direct line between one unexamined characteristic in her parent and a quality she dislikes in her adult self. That is a one dimensional drawing of a three-dimensional world. 

Why is it so hard to tell a story that includes disability as one part of a pulsing, living whole? 

That is my history, my context, the tender bruises still living in my body. But you, my budding storyteller. You’re not a parrot, here to mimic my voice or retell my stories. My bruises are not yours. When I am channeling my highest self, I know. I can unclench my fists, again and again. Disability doesn’t have to mean to you exactly what it means to me. You can have a hundred different feelings about it, and those feelings can change and contradict. But if I’m going to create a sturdy space for you to find your voice, let’s be brave and intentional as we set out. 

Take my hand, baby – look out at this wide expanse – what do you see? Hundreds of days spanning geography and biology, hit by the sun and moon, the water hose and the steam rising off your pizza. Where are the stories? Will you see the sharp edges of inaccessibility? Will you feel the loss of a mother who couldn’t ___? Will you remember Sunday morning doughnuts in bed – my reverence and wonder in your mere existence – our slow and windy way of moving together? Will you feel hindered by me? empowered? frustrated? understood? All of it – at once? And will my wheelchair have anything to do with any of that?

The photo captures Rebekah and her son from behind and at a little distance as they roll side-by-side down a wide, paved path surrounded by green trees and plants, she in her wheelchair, he on his tricycle. Rebekah’s head is tilted to the side, watching her son as they fly.

You’re the narrator of your own life, but I can teach you how to tell a good, honest, brave story. I can teach you to bear witness to all of it. The thought that your connection to me would bring you anything but joy and ease takes my breath away, even as I know, of course, we’ll have our own twists and turns of pain and tension. But hear me now: just because one part of the story is painful, doesn’t mean we pretend it's not there – and it doesn’t mean joy can’t live there, too.

Your story is your own, but I hope I can create space for you to feel all of it – to name the “both” as well as the “and” of it. I hope you notice the threads between limitation and creativity – difference and strength – your mom’s body and the hundreds of ways we’ve found to say I love you. But whatever you see, we’re strong enough and stretchy enough to hold all the parts.

Two horizontal marks crossing each other made by Rebekah and her son with green and orange marker.

CHEWY QUESTIONS – If you want to continue to think through the ideas here, these questions are for you – please feel free to explore this in your personal writing, to talk about it with your people, or to join the conversation on Substack.

• Do you embody an identity that differs from your kids/parents/partner? How do you navigate the space between those two realities? Or what do you do when someone’s narrative/perspective of a shared experience differs from your own?

• Do you have any stories – as a parent/child/partner/friend – that are thirsty for a both/and dimension? Or that you’re afraid to open up to a both/and dimension? 

One long pink swipe made by Rebekah’s son with paint.

Also, a brief epilogue:

If you are into this essay/set of questions/distinct point of view, I am very excited to tell you that I am launching a podcast with my beloved friend Caitlin Metz that I think you might be into. It’s called Scratch That: Parenting & Reparenting Off Script.

A black-and-white photo of Rebekah and Caitlin sitting on a vintage couch, each with one leg up, their doc martins touching. Behind them, a shelf of books and several plants. Caitlin wears a backwards cap, Rebekah’s wheelchair sits off to her side. The words “WE’RE STARTING A PODCAST” are written in white letters across the image.

You can listen to our trailer now, and our first episodes will drop Monday, September 30th! Between now and then, we are hoping to get as many folks subscribed as we can! This podcast is a true collaboration between us and our listeners – it’s only half-made without you. As Caitlin says, this is true in a poetic way, but also in a death and taxes kind of way. Without listeners, downloads, reviews, and all of it, the podcast won’t be able to stay afloat. (Because it’s actually expensive to make a podcast! Did you know that? I didn’t really know that.) 

If you would like to help us launch this thing into the sky, here are 5 things you can do to support the podcast (4 of which are free):

1. Subscribe on Apple

2.  Subscribe on Spotify

3. Subscribe to our Patreon

4. Share with your friends

5. Donate here on Patreon

If you listen to the audio of this essay, I close out the recording with the little intro music we made for the podcast. It includes snippets of sounds Caitlin and I made with our sons, and that would be my partner Micah on the guitar.

Thank you for being here!

xoxo

Rebekah