Living with Cerebral Palsy and Intersectionality

I have Spastic Diplegic Cerebral Palsy. “Spastic diplegia/diparesis: Muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. Tight hip and leg muscles cause legs to pull together, turn inward, and cross at the knees (also known as scissoring), making walking difficult” (CDC). What does that look like for me? The spasticity in my left leg is so tense that my right leg has done most of the work for my movement and balance. It's taken a toll after four decades. My right leg though less spastic has endured the most pain. My hips are so tight it's hard to describe. I usually use the snare on a snare drum imagery because of how tight those are, but even that's not really accurate because you can release the snare without major surgery.  I've had a bilateral release of both hamstrings and heel cords on two separate occasions to reduce the spastic tension. My arms are stronger than my legs. My left arm has a fair amount of spasticity, to the ...

I wrote over a hundred songs and I only remembered how to play one of them. That's difficult to fathom. I composed seven albums over the course of twelve years. I'd played hours long sets from memory and I almost forgot it all completely. My musical creativity was preserved in memory that I couldn't reach anymore. My fingers felt like they'd never touched guitar strings. From the echoes of extinction came a familiar sound.  Special K music died twelve years ago and only I have its remanence in archives. Fifteen years ago, I wrote a song from the smoldering ashes of pain, loss, and failure. I was told it wasn't going to be good for me in so many words and I buried it. After that, I started gradually softening the edges and self censoring my music. Then one day, words like a dagger clipped my guitar strings and silenced my pen. The guitar went in its case after “Until it's Gone” was written.  There's a certain irony to that fact. “Until it's Gone” had a li...

I'm staring at a mountain as I write this. Not the mountains I know, but one I’d never seen before. It's very grounding. I need that a lot. Especially in new spaces. While in this location, I spent a lot of time navigating unfamiliar spaces, winding walkways, cobblestone sidewalks (the beautiful treachery), and new people. All of this newness requires lots of mapping and intentionality on my part.  The mountain may be very grounding but the spaces I'm navigating take me out of that grounded state. When it comes to spaces, I don't like unpredictability. When it comes to life, I expect unpredictability. That's a funny conundrum. Comfortable in uncertainty in one context and completely disrupted by it in another context.  A note about cobblestone sidewalks. They're gorgeous, but awful to walk on when you have balance issues. Maybe this is why I don't get excited about historical spaces (most of them are harder to navigate because accessibility wasn't always...

“I'm the man in the box, buried in my s*it” (Alice in Chains, Man in the Box). The story I'm about to tell always reminds me of that John Travolta and Nicholas Cage movie, Face Off. Now that you're with me on the visual, I'm going to take you on a journey through not one but two surgeries related to craniosynostosis. Where my skull and my brain were growing at different paces. Both of these surgeries happened before the age of five. Good news, they didn't stop me.  The first craniosynostosis surgery happened before I was a year old and this kind of surgery was a matter of controversy at the time (so I'd learn). Basically, the surgeon reshapes the bones of the skull and uses wires for structural support. The reason this kind of surgery is done is to correct deformities, but I had to have it corrected because the wires and the bones were protruding. If this were a wrestling event, the crowd would be chanting, “you fucked up,” at this fact.  The surgeon who did the...

Bob Dylan sang, “you're gonna have to serve somebody.” He was singing about God or the devil, but I already spent most of my life in service to one and don't believe in the other (don't @ me this isn't my first rodeo). But, every day, I'm in service to the demands of my Cerebral Palsy and/or the Intersectionality of living through adverse childhood experiences and complex trauma. What does it mean to be in service to these things? They guide the day.  Starting with Cerebral Palsy, remember, the part of my brain responsible for motor functions, balance, and some other abilities was damaged at some point around birth. Based on my birth records (not joyful bedtime reading – oops, and no AI em dash here), it was probably related to the multitude of things going on when I spontaneously decided to show up early. That brain injury restricted my muscle movement. Hence, Cerebral Palsy.  I don't have much say in how tight my muscles are going to be each day. The default i...

This past Monday, I shared my story of Cerebral Palsy and Intersectionality at a professional conference. The takeaway, ask questions please. And, ask me what I need every time so that assuming what I need doesn't take my voice from me. The unintended takeaway, I say the F-word a lot. I do and I don't deny that, but I also have a very good understanding of time, place, and manner. My four-letter intent was to show up as my whole human and I enjoy words – all of them. Now, on to my reflections of the talk.  First, there's six people that I have to thank for this opportunity even happening. Two of whom are my co-presenter and my current supervisor. Two more are other librarians who encouraged me to step out from behind the walls because they saw me. And, the final two are therapists where some serious work gets done. I also want to shine a light on the three people on the DEI Ad Hoc Committee that needed a disability awareness speaker last year and took a chance on me. There...