Living with Cerebral Palsy and Intersectionality

Seen. Safe. Supported. Why does that matter in the spaces and places we show up? For me, it's because I don't know too many spaces that have done all three at the same time consistently. I was seen and supported on a conditional basis growing up. I was rarely safe. I was seen, safe, and supported in the Church until I wasn't. At work, if I want to feel safe and supported, I have to go unseen. It's hard for me to feel safe and seen at the same time when there are conditions and stakes, such as performance and livelihood.  But, why dwell on the ghosts of the past? I have a good job. I'm in a position of leadership and influence. I feel supported most of the time. It's work, so of course, there are expectations. I'm proud of my success. It's the most polite “middle finger energy” (thanks, Paula) I could possibly give to any of my naysayers. But, I fight with ghosts every day.  “I'm no one's shadow. I've felt the lights and I'm not going back...

Have I cracked the surface of disability in context over the course of the last year? This post marks one year of Cerebral Palsy and Intersectionality. I've told you stories about mountain climbing, literally, figuratively, professionally, and so on and so forth. I've told you about portions of my medical history and racking up 10 surgeries over the course of my lifetime. I've told you elements of my family background. I've talked about the passing of my parents, the addiction of my father, the alcoholism of my mother, mental illness that they both struggled with, my mom's overdose, and how my perspective of these things has changed over time. For one year, six months, I've been sharing my story in front of various groups of the general public, library professionals, organizational development practitioners, and more. I'm incredibly grateful for those opportunities, how they continue to develop, and where they might go.  “Follow me there, a beautiful somewhe...

After 30 years, I spent time in community with others who live with Cerebral Palsy. For the span of a weekend, I did not struggle to feel seen, heard, respected, or understood. I just was. I spent the weekend leading up to World Cerebral Palsy Day, which is October 6th, networking and socializing with others in the CP community. I've been working to find the words beyond, “it was incredible*, or “it was one of the most important things in my life,” to adequately describe what these ultimately few hours meant for me.  I've been in a lot of rooms of belonging in my life. From decades in the Church, to the fellowship of the rooms (if you know, you know), to hanging out with wrestling fans, to attending video game conventions, to the wonderful belonging that was my college experience. Those were all life moments. And now, I added another one. One of the key differences here is that I was seen for what I carry internally and externally. It's almost so meaningful that it's ov...

I recently ran across a picture of my dad and I playing acoustic guitars when I was in college almost twenty years ago. It was a curious thing as far as the stories I tell here. My dad is unquestionably the reason I started playing music with the drums at age four and later the guitar at age twelve. My dad was not a patient teacher. It didn’t matter that my chord hand was the most impacted by my CP. It hurts to make standard chords because the fingers on that hand just don’t bend that way. It’s why I learned how to play the guitar with shape chords, which probably limits what I can do, but it lends to the blues sound I have, which was also my dad’s influence. But, among the curious things in this picture is that we were playing together.  By the time of this photo, I was in college and writing a lot of songs of my own. The odds favor that this picture was of my dad playing along to one of my songs. It was also a time where I was the most free I’d been ever. I didn’t live at home. T...

For me, belonging was giving you what you wanted in order to be loved. It was my only option to be in relationship with others. Some of that is because my dad was an addict and my mom was an alcoholic. Some of that is because I was excluded by ableist behavior and bullying because I have CP. And, some of that is because even my relationship to God was conditional. Success doesn't erase trauma. Even though all that stuff is in the past, it shows up every fucking day. “Just gonna stand there and hear me cry, well, that's alright because I love the way you lie” (Eminem and Rihanna, Love The Way You Lie). Some things that I share with you are hard to reconcile because I don't go too far beyond the surface in some places. I have always sought belonging, that was a big part of the appeal of church for me back in the day. But that wasn't just in external groups, communities, friendships, workplaces, and so on. That was in my own skin and in my own home.  I ingratiated the vill...

Today I'm going to talk about footwear. Maybe not the most exhilarating topic in the world, but I've always had questions about why one would put saddle shoes on a 3-year-old kid with CP. Yes, unfortunately I have pictures to prove it. Why did I decide to write a whole piece about this? Living with CP, what goes on my feet is absolutely essential and critical to how I navigate the world. Thankfully, I don't remember a lot about saddle shoes other than that they were painful and I never wanted to wear them. Thank you 1980s. For me, the shoe game is about durability and stability. I've gone through every type of shoe phase you can fathom. Early on, there were the saddle shoes that were not ideal for my condition or my comfort. Then I spent a lot of time in sneakers outfitted with braces and uncomfortable wax molds trying to correct my gait. I know that doctors and physical therapists were just trying to do me a favor with these tools, but the stuff was painfully uncomfor...