Reintroduction: A Substack on Disability, Parenthood and Everything Else

Including my father. I’m a writer who documents opening up about a disability I hid for thirty years.

Noah, Lisa and I after his first dance class performance in December.

Did I do this wrong? I sent out my first two posts without a full introduction. I actually should introduce myself. My name is Chris and I have a Substack. There, I said it. It’s daunting. What exactly do I write about? Disability and parenthood but it’s not just those topics.

I’m a writer and memoirist who documents opening up about a disability I hid for thirty years. I’ve described this in The New York Times, USA Today Network and Writer’s Digest. I also recently finished a manuscript about my experience navigating an invisible disability through family upheaval. That writing took a little longer than these pieces — it was almost ten years to complete the memoir. I’m a journalist and I’ve worked for magazine publishers and newspapers with a 15-year career in media. I’ve covered national breaking news and interviewed some of my favorite musicians. Interviewing Jason Isbell was the most meaningful. It’s been a trip so far and I’m ready for the next leg. 

1st Substack: What to Wear? Fashion Anxieties as a Disabled Dad

2nd Substack: Learning to Chop, Cook and Let Go as a Disabled Dad

What else was before this Substack? It’s been a transformative twelve months getting here. There’s been successes and losses, death and realizations that have helped me understand how I want to connect. My dad passed away last year and I’m still processing how to talk about it, let alone write about our complicated relationship. I do have one line on a piece I’ve been writing about him. My father kept Elvis Presley trading cards in his top dresser drawer. It was easier to eulogize filmmaker David Lynch on Instagram last week than write a brief obituary for my father. 

I’m figuring out how to share my experiences navigating raising a three-year-old and learning to be open about my disability. I only started being forthcoming with my cerebral palsy after an emergency during Noah’s birth kept my wife, Lisa, separated from us for days while she recovered in the ICU. I wrote about that experience for The New York Times. Following that essay, I had a myriad of discussions surrounding the one thing I always wanted to reveal but didn’t know how to say the words. I couldn’t imagine describing my body even in my twenties. Learning to talk about my lifelong disability with best friends, family and my son has been both beautiful and overwhelming. There are some days I can give details on my disability for hours and others where it seems impossible to explain my cerebral palsy of the right side. Is there a balance? There are a lot of stutters and awkward pauses. This Substack is a way to help me work through all that’s unspoken. 

Who is my writing for right now? The one person who connects with it. I wanted to read disabled voices when I was growing up but there weren’t many stories about people with invisible disabilities like myself  in pop culture. I think about how if I saw more people who looked like me in the media I consumed, then maybe it would have been easier to talk about my own disability before I was thirty-years-old. There are many disabled folks telling their stories these days and helping to make important changes. However, there should be more. This Substack is just one more voice.

I did find happiness writing as a teenager but I stuck to impersonal topics. Mostly music reviews for my high school newspaper. There was a great one for The Blood Brothers’ Young Machetes album. Oh! I just saw their reunion show last month and it was fabulous and they sounded ferocious. However, I had been terrified to write about myself back then. I was afraid that even if I wrote that I have cerebral palsy in a journal, then someone was bound to discover it. These days, I wonder what would have happened if I revealed that I had a disability when I was a teen. When I was sixteen, a friend opened one of my drawers at my sister’s apartment where I lived, exposing the same kind of nighttime hand brace I still wear. They closed it immediately and didn’t say anything. Too close a call for me, I thought at the time. Can we talk about these things in the moment?

My three-year-old son Noah has helped me understand how I want to connect. He has let me see how important it is to talk through my disability and give him language for why I do things differently from some parents. The other day, he told me that I’m clumsy after I stumbled getting his winter jacket and hat on. My cerebral palsy often keeps me off balance. I’m constantly tripping, flinching and knocking over kitchenware. This was a good opportunity for Noah and I to talk about how I approach daily activities differently than other parents. Different from his mom and Lisa’s mom who also dresses him and don’t use their teeth to secure winter accessories.

I became a stay-at-home dad prior to the Substack. I’m cooking weekday meals which is also a far cry from when I microwaved ramen before work in a local newsroom at twenty-four. Our lives are wildly different these days. After the rush to get Noah ready for daycare, I drop off my wife Lisa at the train station for work. Lisa gives him a kiss and Noah shouts “be careful, momma!” as she rides the Tarrytown Metro-North elevator to get to her train platform.

Noah and I are off again singing along to our favorite Chappell Roan, David Bowie and AFI songs before I walk him into his classroom. I then return home to wash his milk cup and write this. There’s grocery shopping, doctor’s appointments and dinner prep. Noah is picked up later in the afternoon and we’re off to the library for animal puzzles on an ancient computer. When it’s warmer we stop at the park and find Noah’s friends. Maybe sit on a bench and watch a gaggle of geese for a bit. We fit in a potty and cheddar bunny break somewhere. I help Noah climb every playground ladder. Scaling the bars was something I couldn’t manage as a child. It’s hard to picture this scene a few years ago, commuting into the city every day, and writing a book.

It’s been rewarding and I’m grateful I get to have this time with Noah. I’m grateful for Lisa who works full-time and supports our lives. She holds us together and keeps us on track. We try to keep our lives simple so we can have plenty of living room dance parties flipping through Chappell Roan’s videos and pretending to toss our hats like in “Pink Pony Club” when Lisa gets home. 

On the weekends, Noah has dance and swim classes. We can walk to his dance studio and pick him up a baked treat on the way home. Since it’s freezing in New York, we’re sticking to indoor afternoon activities. The other week, we went to a screening of Tangled at the nearby Jacob Burns Film Center and we got through most of the movie before Noah was frightened of a character’s cape. Lisa and I are also there on weeknights for dates. We’re lucky Noah still takes naps in the afternoon so I can get writing done, and you know, wash the dishes. We read three-to-thirty books before Noah’s bedtime as well. Another thing I couldn’t picture a decade ago is how much joy I get reading him our favorite stories. We love anything by Jon Klassen. Should I write a children’s picture book next? I’ll put it on my list next to starting a second book on parenthood.  

There will be more change this year. Noah is getting so big and sometimes I feel like I’m chatting with a teenager about our favorite music. I can’t wait to see what’s next for my family. 

Noah’s favorite song this week. The way Noah sings “Barracuda” might be my favorite thing in the world.